That’s Inclusive! Podcast
The NHCDD would like to introduce their new podcast, That’s Inclusive!
Trailer: Welcome!
An introduction to what you can expect from episodes of "That's Inclusive!" Conversations with the DD Council about what inclusive living really means for people with intellectual and developmental disabilities.
Trailer: Welcome!
Episode 29: Assistive Technology in NH with Sara Valli
Episode 29: Assistive Technology in NH with Sara Valli
Episode 29: Assistive Technology in NH with Sara Valli
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities.
What does that look like? And how can we work together to make our world a more inclusive place?
Isadora Rodriguez-Legendre (IRL): Hi everybody. This is Isadora Rodriguez-Legendre, Executive Director at the New Hampshire Council on Developmental Disabilities. Welcome to our show. That's inclusive! Today we have Sara Valley from Assistive Technology in New Hampshire. And she is going to tell us a little bit about what they do. Hi, Sara.
Sara Valli (SV): Hi.
IRL: So, it's really nice to have you on the podcast. Tell us a little bit about yourself and how you came to be the director.
SV: All right. Well, I have been a speech and language pathologist, since 1999, working primarily in public schools. And I paused for a little bit and was the Director of Assistive Technology at a college in California, at the Santa Rosa Junior College, where we did a lot of great work. Turning in-person classes into fully accessible online classes. And that was about 15 years ago. We were working on that. There, as well as, providing direct assistive technology training and support to adults who are taking college classes. So, I've always worked, with assistive technology. I was blessed by my very first workplace, which was in Amherst, Massachusetts, a place that was at the time called the Hampshire Educational Collaborative. That was, is, still a leader in assistive technology.
SV: So, from the minute I finished college, I was really immersed in how assistive technology can help people with all different disabilities, as part of my work world.
IRL: That is amazing. I have so many questions about kind of what changes have been over the amount of time that you've been doing this work, but I'm going to save that, for a little bit later in the show. And really just ask you, like, what is ATinNH? What do they do?
SV: So assistive technology in New Hampshire, which is housed at the Institute of Disability at UNH, in Durham, is one of the states AT Act program. So, every state and territory have an AT Act program. And we have, mandated by our grant, which is a federal grant, to provide state level and leadership activities. So those state level activities are things like making sure that people have access and get to learn about assistive technology through providing demonstrations and loans of assistive technology. And the intent of those loans is so that people can try out different types of assistive technology to meet a need that they may have. Before they decide to purchase it so that they're not wasting their funds or buying something that doesn't fit their needs, because they saw an ad for it, or someone said, oh, this worked for me.
SV: We also, provide reuse or refurbish and reuse equipment. So, for example, some of our seniors, the senior centers in the state are partners of ours, and they may have used wheelchairs or commodes or walkers that they've fixed up. And then they will loan or give to people who need them. And then we have, a partnership with the with GSIL’s, refurbished equipment marketplace.
IRL: Granite State Independent Living.
SV: Yes. And so, they will take in donations of used pieces of assistive technology equipment, power wheelchairs, other things, get them refurbished and ready to use and then resell them at a very significant discount. Usually, it's about 25% of what it would have cost new.
IRL: Yeah. we're actually super familiar with refurbished equipment Market Place or R.E.M. because we did a grant a few years ago when they were kind of transitioning to Granite State Independent Living from another organization and really helped reduce the costs, even further for people with intellectual and developmental disabilities. So, we definitely appreciate their work and everything they do to kind of provide needed resources, especially to a community that doesn't always have, access through Medicaid funding or other, you know, groups and organizations or time to wait for authorizations and things like that. So, it's a really it sounds like a real benefit to the community to be able to kind of try things out. And also, to have them temporarily while they wait for their own, maybe.
SV: Yeah. And so, for example, our loan program, we have a number of iPads that people can borrow that have all different AAC apps or alternative augmentative communication apps. And so, you can borrow those for up to 45 days to trial different devices or different types of alternative communication, and choose the one that works best for you.
IRL: Wow.
SV: So that could be used in a school setting or a nursing home setting, or a work setting. And so, we have we have things like that. We also have partners with places like Northeast Passage. Who has a huge amount of recreational equipment. Right. Because that's really important too.
IRL: Yeah. Yeah. We love kind of supporting inclusive and integrated outdoor recreation projects that were familiar with Northeast Passages work, too, but I didn't realize that they also kind of work in tandem, to provide, you know, support to people who need assistive technology in some way. But it makes sense. And a lot of the adaptive sporting equipment. Right? Is based on a person's individualized needs.
SV: Yeah. And I think that sometimes, we don't necessarily think about assistive technology when we think about aging into disability or age, you know, and so all kinds of different tools can be considered assistive technology. So many of us have thought about and used the grips to open a jar. Well, there's also battery operated jar openers that you put on and press a button and it will open a jar with even less need for hand use. So those kinds of things. But then also, technology types of things. So, screen readers or dictation software or, you know, we, we often carry around phones that have built in assistive technology that anyone can use. But if you need it to be able to, to complete the action that you want to complete, then it would count as assistive technology.
IRL: Yeah. And I think that people aren't even really aware of all of the things now that are available through smartphones that people can use if they, need some sort of support for a disability. But like, if, you know, you know, so, like one of the things that I think we were doing during the pandemic is like little demonstrations of like, what can your phone do? And, and it was so eye opening about like kind of how much, progress has been made over, you know, relatively short amount of time as far as, assistive technology that's like digital or, some sort of right on the phone.
SV: So, at the beginning of this, you said, oh, so curious about that progression, right? Yeah. So, I was talking with a friend who was also an assistive technology specialist, the other day about Dragon Naturally Speaking, as we call it Dragon Speaking. When it first came out, it was you had to speak each word and pause and wait. And it was so much effort for people who had difficulty typing or spelling and so it was like, you really had to want to use that. To get your thoughts out on paper. And now you can talk to your phone, and it will send a text, and you can speak pretty fast, and it will work really well. And there's new assistive technology that is really specifically made to understand voices of people who have articulation disorders, or maybe have had a stroke and they will record that person talking for a while and figure out their speech patterns. So, it will type what they're saying, even if it's difficult to understand. That's a huge difference.
IRL: Yeah, that’s progress for sure. Yeah, I remember probably it was more than ten years ago now. I've kind of always worked around people with disabilities and those programs where so like, I tried to use, dictation software way back when, and it was so cumbersome and so slow. And I was like, you know what? I'm just it's faster if I just type it. And it it's definitely different now, right? Like, I do talk to text messages and things like that. And it's got to be so much better for people who, you know, want to be in the workforce, but who need some sort of support. Now, the technology is so much better. It allows them to kind of. Yeah, yeah.
SV: And I think one of the big things, around assistive technology in the workforce is, you know, assistive technology is considered a reasonable accommodation, that an employer, should provide for them, needs to provide for them. And my favorite resource for that, for people who may need that is I'm not sure if you're familiar with the job accommodation network, but they have a fantastic website. It's Askjan.com, JAN, they have some really fantastic examples of letters that you can use to ask an employer.
IRL: Oh, that’s amazing, we will definitely put that in the show notes.
SV: It's one of my favorite resources. When I was working as a speech pathologist in high schools, one of the things that I would often have our students do is to complete a self-advocacy letter that outlines strengths, needs, and accommodations they need. And they would do that in between grades so that they could give it to their next year's teachers. But also, as they're graduating, right? Because once you graduate and you are an adult, often you have to advocate for yourself. And so, if you have that letter, it's a really nice way to be able to do that in writing. Because sometimes people struggle to verbally advocate for themselves. Right?
IRL: That's true. Yeah.
SV: Which brings me to one other thing that I find fascinating that I really wanted to share. So, I was recently at a conference and Apple has released a new sort of an AI feature where you can record your own voice, and then it will make an AI voice that's your voice. So, you record a certain number of phrases, and then it can use your voice to read out loud text, which initially sounds creepy.
IRL: Yeah. Okay. I was going to say it sounds a little strange.
SV: Well, it does change unless you think about it as assistive technology. Okay, so if you are a person and who is diagnosed with ALS and you know that you may eventually lose your ability to produce verbal speech, then, it's not there just yet, but I foresee that you would be able to use a communication device and have it speak in your in your voice because it has learned your voice. I also feel like it's really important to think about when we think about some of our neurodivergent folks. There's a lot of people who are sometimes nonverbal, right? And so, they have verbal speech. So, they may not qualify for an AAC device. They may not qualify, you know, so those kinds of things. But if they could use typing and have their own voice speak their typing, that is a really pretty neat piece of assistive technology.
IRL: Yeah, that’s pretty empowering to be able to communicate even when you don't have the power to use your own voice. Yeah. And in your own voice. That's very powerful.
SV: Right. And but that's it. A great example of a commercially available technology that in that instance is used as assistive technology.
IRL: Wow. That's pretty awesome. I yeah, yeah, that's definitely come a long way since the early days of Dragon and those things. It there, like how would someone who thinks that they might benefit from assistive technology get in touch with ATinNH?
SV: So, we have a website. We're part of the IOD. We also have ATinNH.AT4, the number, all.com (ATinNH.AT4All.com). And that's where our lending library is. So, we have a searchable database of assistive technology that people can borrow for 45 days. At no cost. There are some things that, for example, Northeast Passage has that there is a small fee because they need to do upkeep and things. Right. So adapted bikes need to be serviced and so that that is there. People can definitely do that. They can email us on our website is all of our contact information. But Jen Daniels is my program coordinator, and she is fantastic at responding to emails. And if she's not sure, she'll send it to me, and we'll connect people with the right partner.
SV: So, for example, if you've got a vision disability and you message and say, I'm not really sure, we might connect you with someone at Future Insight who's one of our partners because they're the expert in assistive technology for vision or Northeast Deaf and Hard of Hearing, or, you know, one of our partners, if we don't have the answer, we probably have a partner who does. And also has some equipment that you can try out.
IRL: That's awesome. That's great. So, people with just reach out and, be able to learn more about how to access some of this equipment and how to kind of try some things out to see what works best for them. What happens after 45 days if someone, thinks that they might need it for a longer?
SV: So, that's a great question. So then there, if they have a case manager or something, they may be able to help them navigate the process of getting insurance to purchase somethings. Other things, they would need to purchase on their own. I am in the process, and hopefully it will be set in place by June, of working on a bulk purchasing program whereby, different organizations within the state, could purchase things through us at a discounted rate. So, we're working on the logistics of that.
SV: There are a few other states who do that, and I'm in conversation with them around that. And so, there's a variety of different ways. Sometimes if someone is really struggling with funding. There are ways that, a Lions Club or an Owl Club or something like that would help with some funding. If someone's in a school, that school, sure could fund it. If someone's working with Vocational Rehab, they often will purchase assistive technology for people who need it for work.
IRL: That's great. And I, I just want to encourage you to add the DD Council on to that list. We have a small grant. It's not a lot of money. It's about $250 maximum for supporting people who need assistive technology and are either unable to get it or are waiting for an assessment or something. But it sounds like this also would align well with some people who might just need a little bit of assistance to get what they need to make their lives easier. Especially if they have tried it out and like, know it works for them, but they have limited resources. If they have an intellectual or developmental disabilities, they should definitely reach out to the DD Council and see if they're eligible for one of our grants.
SV: Yeah, I, I do want to add that I recently got to play with a really cool free widget that will work on, Macs or PCs, and it's called Morphic and it's free. And what it does is it pulls all the accessibility features to the front. So that people don't have to search for them. And it can also you can also create some buttons for very specific tasks that you need to do.
IRL: So, like on a computer. Oh yeah.
SV: It's a pretty neat program that's worth people checking out.
IRL: That's awesome. Thanks for that little bit of information. So, as we start to wrap up here, what do you think are the major takeaways that you would want people to have about ATinNH after this conversation?
SV: So I think that I want people to engage and, not be afraid to reach out and try or ask, you know, if there's something that someone who's got a disability or who cares for or loves a person with a disability that they feel like that person really wants to do, but there's some reason that they're stuck or they can't do it if there's a physical reason or, some kind of an access reason, there's very often some piece of assistive technology, some tool that can help make that easier, whether it's customized or off the shelf. And so, if there's something that you want to do that you feel like you're limited in, then reach out and ask us, and we can try to help connect you with how to make that easier. And, and I think that reaching out and asking creates not only, you know, potentially an answer that we can say, yeah, we have this really cool tool that is going to make that so much easier.
SV: But if we don't, I have the ability to connect with all of the other AT programs in the country and ask them, hey, I have a person in my state who wants to be able to do this, and this is the challenge with it. Anybody have a resource? And they will respond, and we can connect people.
IRL: Yeah, that's really cool. And partnerships are so important to the work that we do. It sounds like it's also a big part of what you do is collaborating with other groups, organizations and entities that really have, you know, like minded vision and mission of making community and life more accessible and accommodating. So, I want to thank you for the work that you do. And thanks for coming on the show.
SV: Yeah, this was fun. Thanks. And really, honestly, feel free to reach out ATinNH. We are around.
IRL: Yeah. Wonderful.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV.
We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 28: Politicking in the Produce Aisle
In this episode, Area Agency Policy Liaisons Karen Blake and Carrie Duran discuss their experiences advocating to the legislature and beyond and how they train others to make their voices heard.
Learn More:
Community Crossroads
Lakes Region Community Services
NH Leadership Series
The General Court Website
RSA 171-A
Episode 28: Politicking in the Produce Aisle
Episode 28: Politicking in the Produce Aisle
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
VB: Hello, everyone. Welcome to That's inclusive! Today, I'm here with my good friends and comrades, Karen Blake and Carrie Duran. And today we're going to talk about advocacy in policy. So, I'm going to let them introduce themselves.
Karen Blake (KB): Hi. Wonderful to be here. Thank you so much, Vanessa. My name is Karen Blake, and I am a parent advocate. I also am the Director of Community Partnerships for Community Crossroads, but I live in the North. I live in, the White Mountains, and my family is served by Northern Human Services. And I also am the co-Chair of our Family Support Advisory Council. Carrie.
Carrie Duran (CD): Yes. What a pleasure to be here. Thank you so much, Vanessa. And it's always fun for Karen and me to come together and share a little bit about our advocacy journey and how you can get involved as well. So, my name is Carrie Duran. I am also a mom and parent advocate. I have a 13 year old daughter who experiences a developmental disability. I also have twin girls who are 18 years old and are now in college. I live in Wolfeboro, so I am served as well by Northern Human Services, but I also work as the Legislative Liaison and Advocacy and Community Engagement Coordinator for Lakes Region Community Services.
VB: Great. So, I really appreciate you being here today and talking about, something that is very dear to my heart and that is civic engagement, the ability for people to be a part of the legislative process. And we here in New Hampshire, we have a privilege of being able to interact with our legislature and our policymakers on a day to day basis. You know, the old, adage, if you throw a rock, you'll hit a legislator in New Hampshire. We have the third biggest legislature in the world, believe it or not. And some people think that that's problematic. I think it's wonderful. I think the fact that your neighbor is your representative, is as grassroots as you can get when it comes to your ability to advocate for your needs to directly to the people who are making those decisions. So, I want to ask you, how did you get started in advocacy policy?
CD: Oh, my goodness. What's interesting is Karen and I both have similar stories as we started as parents that, that kind of began our road. If somebody had asked me, a decade ago that someday I'd be a Legislative Liaison, I would have said, what is that? What? What do you mean? Working with the legislature? Like that way. There's no way I'd be doing that. But you just you never know, where your journey is going to take you specifically as a parent and that is where it started for me with my daughter being born, with the developmental disability of Down's syndrome. I just felt I needed to learn as much as I could on how not only to support her, due to her disability, but advocate at the school level, advocate at the state level. And I needed to educate myself and learn as much as possible, as her mom. And so, I started joining, councils and committees and taking trainings.
CD: You will notice that in the state of New Hampshire, we're also so fortunate that there's so many nonprofits, including our area agencies, that offer free webinars and trainings on how to get involved with advocacy all the time. So, I just started attending things. I became a part of the New Hampshire Leadership Series. That was, in 2014 and if when I started on all of that and jumping in, I had my doubts that I would be capable of ever standing in front of, the legislature in, you know, in Representatives Hall and speaking about the needs of fully funding the developmental disability community. I never would have imagined that. And you brought up a good point with how accessible our legislature is and how lucky we are in New Hampshire and the fact that a lower income single mom of three, could go in and stand up in a room full of, you know, potentially hundreds of people and share her story. It’s very profound and that's very open to every single parent, individual citizen, to be able to do that. Is it a terrifying prospect? It absolutely is. And Karen and I have been doing it for, many years. And we could still shake a little bit, but to be able to have the opportunity is, is such an honor. And I love what I now do for work, but it all just started advocating for my daughter and just led to something else that I feel super fortunate to be able to do now. Karen.
KB: So, I love all of that. Carrie. And I agree with you, Vanessa. We're very, very fortunate in this state with the accessibility to our legislators. As a transplant, I've now lived in New Hampshire for 20 years. I was very familiar of a different New England state and how things, functioned there. And I was so pleasantly surprised that you really do get to know your legislators. They are there for you. You can bump into them at the grocery store. I see mine walking they’re their pet, pretty much daily across the street. You know, and that just doesn't happen in other states. And so, we do have a lot of avenues to make those connections. Also in a similar way, I was, really not expecting to be an advocate. That was not my career goal. But now that it that I'm here, you know, it I can't imagine anything else. It is a wonderful opportunity and honor to talk to, you know, our legislators as well as other policymakers, you know, the department about the needs of, people who experience disability, but also to ensure that people with disability get to speak for themselves. That is a big push for me these days, given, that my loved one is about to become an adult and now it's going to be his turn.
KB: He's going to be the one who's going to advocate for himself. And I'm going to kind of step back a little bit, because this is his life, not mine. And I really want him to have those opportunities to really make his voice heard. Now, professionally, yes, I am going to continue advocating, it is now my job. But I did want to get, you know, go back a little bit, and just to really put it out there, you know, that this was not what, you know, myself or Carrie or other advocates had planned. You know, and I could not imagine 15 years ago, standing in Reps Hall either. Though I do sometimes my piece of paper in my hand still shakes. It's not an easy thing, but there are so many ways that you can advocate. So, yes, there's legislative advocacy, but there's lots of ways for you to get involved. I actually started as a Parent Information Center volunteer advocate for, special education. And that all came about when, my loved one was transitioning from family centered, early supportive services to the school when he was three. And I remember back then the booklet, the many pages booklet that they handed you was called, you know, the Lilac Book. And I remember going through the Lilac Book and even with my, you know, degree in legal studies, I could barely read it and really understand what my loved one was eligible for. And all I could think of is if I'm having trouble reading this, what about other parents? Who's sitting with them at that table? And an advocate was born.
KB: And it just continued on from there. You know, I became a Parent Information Center volunteer advocate. I also was a part of the New Hampshire Leadership Series. I'm also a Lend graduate, leadership in education in the neurodivergent, developmental, and related disabilities. And I eventually went and got my master's in public policy. Now, I dove into the deep end, but there is a lot of room in between, where people, you know, at their own comfort level can, you know, even just, you know, begin to, you know, put a toe in advocacy or, you know, you know, jump, jump, fall. And, and there's everything in between. And I hope today that we're going to give people some ideas about how you can begin to do your advocacy. And even in just some of the smallest ways.
VB: Yeah. I think one of the great ways for people to kind of dip their toe into advocacy is starting really local. Starting like in your town or in your city. You know, I do some advocacy in my community, and I started by just going to, Board of Aldermen meetings, going to planning board meetings, just showing up, not even necessarily speaking, or expressing an opinion, but just kind of like watching how it works, getting to know, the people who are involved. And also, just kind of getting to know the other people who are also advocating building a network of people, in your community. So, can you talk a little bit about how you encourage people to advocate in, in their communities?
CD: Sure. Can I jump in, Karen?
KB: Oh, absolutely. Carrie. Go for it.
CD: So, you brought up something really amazing, Vanessa, is that you talked about showing up and building those relationships. And at our local level, I think showing up is 98% of the advocacy is giving yourself an opportunity to educate yourself about the local policy issues. In Wolfeboro, we have a Board of Selectmen. And going as well to your school board meetings. You don't have to say anything. You don't have to get up to the microphone. Public speaking can be terrifying for so many folks. But you're going to feel stronger the more you show up. The more you build some relationships, the more, folks see you there. Many times, I have gone to a Board of Selectmen meeting, and then a couple days later, I will run into someone at the grocery store, which seems to be where we see most folks, in our small towns, and they will say, thank you so much for coming, this was a selectman member, we really appreciate the public attending and not just the usual faces. You know, there's a lot of folks that do come to every local town event. And our Board of Selectmen, our City Council, they're really looking for a broader perspective. And everyone has a voice. Everyone has something to share. So don't ever feel like, well, I'm not a homeowner. I'm not a business owner. I'm. I just, I work at the local coffee shop. Why would they want to hear from me? They absolutely do. And that it's your privilege and your right as a citizen and as a voter, as a member of a community to share your voice, be heard and be seen. Is so important. So, I love that that you said that, Vanessa. The showing, showing up and just dipping your toe in, showing your face, saying hello, smiling, you know, meeting your neighbors. That is how it starts. And then you get hooked, right? Karen, like you and I both just got hooked. And we love policy, and we love advocating.
KB: And just to even build, to build off of that. I absolutely love that, Carrie. You know, it's the same thing with your state legislators. They do want to hear from you. They are only as good as the information they have to make the decisions that they need to make. And if they don't hear from you and don't hear your story and your perspectives, they're not able to make the most informed decisions, if you will. So, they really do want to hear from you. And we now have lots of ways at the state level to actually be heard. You know, we have the ability for any bill, and again, this is not true of every state we have, for every bill that is, presented in the House or the Senate, there has to be a public hearing. And that is not true of every state. So, we are very fortunate there. There are many ways to interact with your legislators. And there is going to, going on to the General Court website and just, you know, having an opinion on a bill, is very easy. You can sign in. You know, sign in and support or not or neutral. In the House you can write a little blurb. You can also email your legislators, and find out more about, you know, who's on some of the key committees. But I do want to, you know, get back to that. You don't have to do it all. And I think that that's really important to hear. You see, you know, you're hearing from, you know, Carrie and I and Vanessa, and we do jump into a lot of different things. But if you find your thing that you're passionate about and you speak on just that, you're doing a whole lot of good. Because, you know, you guys are the experts and you're the experts in your own lives and how things impact you, your families and your communities. And they really do need to hear your perspectives.
VB: Thank you for saying that. I think it's important that not only do you not have to do it all, but you also don’t have to know it all. I think that that's.
CD: Yes. And that's why you're so right. Yeah.
VB: We have to work through that because it's intimidating to get up in front of a committee and they're going to they might ask you questions. Right? Right. But you are an expert in your own life experience. And I think that that is so valuable. And I think that we need to make sure people understand how valuable that is. It's not only valuable to the legislators who are hearing you talk about how policy impacts your life, but it's all of the public hearings are recorded, right? And anyone can watch them. And I think it's a valuable that other people in our state get to hear other people's life experiences and maybe to learn something new and maybe to feel like, oh, that person feels that way too. And is having that experience too, right? So, you know, I think that's something that a lot of people have a hard time pushing through. And also, I think that it's a way for legislators to get to know us as human beings. Like, that's one of the purposes you serve, and you go there is that you're showing them a face as a human, and that continues to humanize the policies and the decisions that they're making. So, I want to I want to talk a little bit about how you build relationships with legislators, like one on one, really authentic relationships with them.
KB: Carrie, why don't we continue on? Why don't you jump in first and then I'll close us off.
CD: Sure, well, I don't know, Karen. We keep going back to produce. Yeah. I, you know, the grocery store. I guess as a mom, I spend so much time there, but I have, had my best conversations with, my local select board members or my legislators, over the avocados. You know, you brought up a good point earlier, Vanessa and Karen, that, you know, our legislators want to hear from us. So, when you see them at the post office, say hello. You don't have to have a big conversation or be prepared with a two minute, as we call elevator speech about, you know, a certain policy or bill. You just go up and say, you know, hi, Senator, hi Representative. My name is Carrie Duran, and I live here in Wolfeboro, and I just wanted to introduce myself. And nine times out of ten, I would bet ten times out of ten your Legislator is going to be so happy that you reached out and said hello. And they could, you know, have a conversation with you right then and there in the post office. Or they might give you their card and say, you know what, I would love to talk with you further about this. Will you please reach out to me? That is definitely one of the advantages of living in New Hampshire and having access, to our policymakers and our lawmakers. The if you're a little shy to reach out to them in person, email them you sometimes when you go on Gen court, we haven't talked about that yet. That's the website that is everything New Hampshire legislature, sometimes they'll have their personal emails on there, and sometimes they'll have their personal phone numbers on there, because they want to have that contact with legislators. So again, you reach out, you make that first contact to build a relationship with a policy maker or legislator. You don't have to have a wonderful speech to say. You just introduce yourself and say hello. And that is where the beginning of that relationship will start is with a hello and a smile.
KB: And, just to build off of that, you don't even have to do it when you have something specific to say. In fact, I would recommend meeting them before you do. If you know, just even to introduce, like, hey, I am the constituent. Constituent means that they, represent you essentially, and just say, hey, this is who I am. I live in your town. This is my family. And, you know, some of the things that might be important to you, even if there isn't a piece of legislation. Because once you make those first initial connections, it will be easier when you do have something you really want to say. You can do it right now if you have something that you that you're very passionate about or you know, something that might impact you or your family. Please reach out even if you haven't done before. But if there isn't, this is a good opportunity to begin to build those relationships. And over time, you know, you will really have a good dialog with your legislators as well as other policymakers, selectmen, school board members. Get to know them and have them get to know you and your family. If that's, you know, that's something that, you know, an area that you're coming from. But I will say that, when you are meeting people out and about or you are making a phone call, because Carrie is 100% right, if they're giving your personal email and they're putting their personal cell phone or home phone number on it, remember, some of our legislators are a little older. It may be a home phone. And somebody other than your legislator may answer that phone. Make sure that it it's at a reasonable hour and that you’re inquiring, you know, is now a good time. And if it's not a good time, you know, can we set up a time?
CD: I love that Karen, and I love that that's so true.
KB: Even just as a meet and greet. You know, can I meet you for coffee? Can, you know, can I go up, you know, go up to them at different events now, places you can find your legislators besides a grocery store? So, you will find them there. And fun fact, most of them have specific license plates, so you can, at a glance of a car, know if there's a legislator, in the nearby vicinity. But any
events that are going on in your town, there's a lot of times that your elected officials just show up. So that's and a really good opportunity. They're there to be a part of the community that you can talk to them. One representative that, we only have one. It's a small town, but goes to everything. So, I have had great conversations with, Representative Stringham, at the Lincoln Library book swap. He actually came to, one of the freestyle competitions at our rec hill. And, you know, you know, he was there to be supportive of the community. So, you don't have to look very hard to find them. They, you know, I love what you said earlier, Vanessa, about, you know, throwing a rock, and you hit a representative because it is it is kind of true. Also on the General Court website, they also have pictures. Many of them have pictures of your representative. So, if you don't know what your representative looks like, that's another great piece of information on, you know, that catchall website for everything legislation.
CD: Vanessa, I have something to add to this, if I may. Yeah. So, I talked it so many times. Our legislators are hearing from constituents when something is wrong. Yeah. When they're upset about something. Remember that building relationships with our legislators also means saying thank you. So, if there is something that they were able to accomplish or they supported that was really beneficial to your family, reach out with an old fashioned handwritten thank you note or a thank you email. And that is just as important.
VB: Yeah, I agree. And you know, as in a lot of the housing work that I do in my community, when we decided that we were going to go to the planning board meetings and go to the zoning board meetings, one of the things that we consciously decided was that we were going to show up to advocate for things and after a while of doing this, someone from one of the boards commented to me how refreshing it was to have people come to the meeting and say that they want something to happen, instead of the constant hearing from people who don't want things to happen. And I think that lent a lot to being able to build relationships with people who were sitting on these boards. Just because when you're coming at advocacy from a productive point of view, people want to work with you. And I think it also, builds trust. I think that when you are building a relationship with decision makers, when you're building that
kind of trust, even when you don't agree on something, you have a level of trust that you understand that it's simply because of positioning and not an adversarial, way that you want to communicate with them. Right?
CD: Absolutely. Vanessa. Yeah.
VB: And a lot of that kind of comes from like Karen was saying, just like having personal relationships, you know, being and being encountering people outside of that direct role that you're playing. Like, you're my legislator. I'm the advocate, like having opportunities in your community to interact in different ways and find out things that you have in common with each other. So, I want to talk a little bit about how you teach other advocates to work with legislators and work with decision makers, and also on the training program that you two have developed.
CD: Karen, would you like to start this one off?
KB: Sure. So, there are a lot of wonderful programs here in New Hampshire that you can become a part of. One is the New Hampshire Leadership Series. Carrie and I now assist, the New Hampshire Leadership Series for what they call their leadership weekend. We also do drop ins educating about the legislative, you know, the legislative process, which we call Legislative 101. We also, do a lot of support within our roles as legislative liaisons to educate and, and support other individuals who are looking to, to, to testify, and to give, you know, written testimony. We're there as a resource for anyone who needs us. Also to explain anything that might be happening, you know, because some of these bills are, involved. And sometimes the meaning is not clear. So, we do a lot of, support with individuals, families. And, you know, at the request of anyone that, that we can help out with, I know that we're also doing some additional outreach. I am, as a part of Community Crossroads, will be starting next Friday, a policy partners pop up, which will be in the afternoons at 1:30. I got that idea from Carrie and it's a great idea. But we're also, Community Crossroads is also going to be sponsoring, additional, webinars throughout the legislative session.
KB: Our, first one is going to be, you know, learning about the law that assist for, for disabilities, which is RSA 171-a with the wonderful Kathy Spinney, who happens to be a board member and a parent of Community Crossroads. And that will be on, Monday, March 3rd. But Carrie and I have, created a, a webinar training program called the Art of the share. And it is a program where we help people learn how to share your story and the different aspects of sharing your story, because that's the basis of any of your advocacy is how things may or may not impact you positively or negatively. I really like what Vanessa said about telling them when they do a good job. And also, whenever possible, even if you're not 100% for something, if you see a better way, let them know. And being really productive in, in a different way. Now back to the art of the chair. So, this, this came about because, you know, we wanted to have people, you know, have an opportunity to, to talk about the aspects of sharing their story. You know, how to, you know, to write your story, what we call an elevator pitch, which is a minute to 30 seconds and also to condense your story, because many of the public hearings that we go to, you only have two minutes. So, Carrie, do you want to tell it?
CD: Well, well, yes. Well, and one of the things that Karen talks about a lot in our, in our training, the art of the share is everybody has their core story, their history of how they got to this moment. And once you have that crafted. Then throughout, if you're advocating for your child, you can craft and adjust that and change that to, gosh, I once advocated for all day kindergarten. Well, then I advocated for the Medicaid dental bill, when Katie was older. Now I'm advocating, you know, for something else because she's 14 years old. But the core story stays the same. And, you know, you want it to be flexible and malleable to then change it to the specific policy issue that you're focused on. So, we teach you, how to do that. What's just a little bit of history, Karen, we didn't share. Karen and I both met as part of the New Hampshire Leadership Series. She was actually one, the mentor, I believe, at the time. And so, we met there. That was in 2014. So, a few years back. And so, our relationship started as in that capacity as I was learning how to be an advocate. She had already been through the program, but we served together on the Family Support Council for Northern Human Services and through that, you know, became friends and then colleagues, as I seem to follow in her footsteps in her career path. And she's been an amazing friend and mentor for me.
CD: But we started the Art of the share during Covid because that's when everything switched to online. And so, we started making videos about how to access the, the legislature online in this new world.
KB: Right.
CD: And so, it's kind of started out of necessity. Okay. How do we access this? And then it just sorts of grew into the art of the share. And that's something to remember as well. When you're choosing trainings that appeal to you, you know, understanding that your situation changes as a parent, as an advocate. And what worked really well for you and your family a year ago. Maybe you need to learn a new approach, a new way to do things. There is no wrong answer. Wrong way. It's making it your own. And that's what we hope with the art of the share, which we've we haven't scheduled one for the spring. We've got to do that. Yeah. Coming up. So, I also offer through Lakes Region Community Services every Friday at noon, a legislative update, zoom hour, advocacy hour that is a little bit freeform that, employs staff, family members and members of the community come on, and what are you concerned about in this moment. And it's kind of turned into a discussion, not necessarily a training, but how do we move forward with an onslaught of policy changes that are constantly coming our way. And how do we process it and how do we move forward from that? So, it's kind of become a, a community of, of process, just processing what's happening and what the next steps and next action are that we can possibly take as, as citizens, as advocates.
CD: But as Karen said, in helping families and individuals to share their stories, reach out to legislators. It just starts with your personal story that you are the expert, in your personal story. And I think it's important to remember, for our legislators when we're doing those meet and greets and we're building those relationships, is to invite them to see you as a resource. You are a resource with your child, with, your loved one or family member, a particular policy issue. You have that information and maybe they don't know anyone with a developmental disability. So, hey, Carrie, we have this coming through. You know, I remember you were a great resource last year. Can you give me some feedback on, you know, this particular policy issue? Be seen as a resource, develop those relationships and your legislators will come back to you time and time again. Because you've established that relationship as a parent, you don't have to be an industry professional. You don't have to be a legislative liaison, you just have to be a citizen, and you are automatically a valuable resource.
VB: Yeah, that's totally 100% true. I we see, you know, the three of us are down at the legislative office building in the State House often, you know, mostly because that's our job. But I see time and time again that if someone is advocating about something that they think is problematic or maybe it can be fixed, that oftentimes legislators will reach out to us or to advocates and ask us if we would give them some input on how to fix the bill. And that's when you really feel like you're working together, because this whole governmental process, this whole decision making process, it's really about working together with our legislators, our local decision makers, and all of us who are citizens and who are part of helping them understand and helping them uphold the promises that policy makes to us, for all of us to build a better life.
CD: Well said, Vanessa. Well said.
VB: Thank you. I want to I want to close out by just talking a little bit, about what Carrie used the word onslaught. And I think that sometimes some of us can get a little bit burnt out, because once you start getting involved and starting to understand how policy affects our daily life, you really can become really deeply entrenched in everything that's going on. And, and we are living in a very overwhelming time all the way from the federal government, all the way down to our local community. And it can feel like a lot, it can feel like we're trying to take on a lot. And so, I just want to talk a little bit about how, what self-care that you engage in order to kind of pace yourself or, and not burn out while you're doing the work that you're doing.
KB: That is, it's so important. Vanessa, especially right now, I couldn't agree more. In self-care and as well as being very protective of your time and your mental space, if you will. And one thing that, that I did want to talk about, before we switch over a little bit is you know, just to, to not go on the assumption that your legislators know anything about disability. They really, really, really need you to speak up and advocate. I just always myself go back and I try to remember and give people a little grace, about not knowing because prior to my loved one being diagnosed, I knew absolutely nothing about disability and nothing about developmental disabilities. And I think that, you know, going in with that grace and understanding that the individual that you're speaking to may know nothing about it and to be a little patient, that they may not know, and they might not say the right things. So please, you know, just give them a little grace. Because they really do want to know, about you, your families, and your situations.
KB: But, to segue way back over to what Vanessa, was asking about, how do you manage, all the onslaught of information that is coming at us? It is, it it's understandably it is really a lot. So, a couple of things that, that I have been doing is, I don't watch the news anymore. I read the news, and I only read a couple of key news outlets. I do get alerts. So that also gives me the space to deal with the information, at a time that I can do it. And one of the things, especially for, the legislative session, once upon a time, the legislature really only had public hearings on Tuesdays, Wednesdays and Thursdays. And now they do it five days a week. And one thing that that I have been, advocating for people to do is, we get a lot of the information the Friday before. Take some time on your weekends and look at the public hearings that are coming up for the week and just get it done in on the weekend, and then you don't have to worry about it. So, what I mean by that is signing into bills, you know, for or against doing a little blurb, taking a little time, maybe on a Saturday or Sunday morning and getting it done. And then it's done, and you don't have to worry about it anymore. For those that that are just dipping their toe in, you know, if there are a couple of bills you're really invested in, that's what you do. From the developmental disability community. A couple of things that we're really focusing on is the budget, and one of the, the other things that we're advocating for people to do is to pick your thing. So, we're going to be asking everyone to come out for the budget. Whatever your opinion is, we want you there. And if that's the only thing that you can do, this legislative session, that might be the thing for you to choose. But the other piece is, if you have a little more time, pick one other thing.
KB: Is it one bill? Is it one area. And then you have to just trust the fact that there are other people who are working on the other things that you're really interested in and invested in. So, if right now you have a school age child, and you know, maybe one bill, is really important to you, or one aspect of that policy is really important to you. Do that and then trust that people like Vanessa are working on housing, that other people are working on employment, really understanding that we are a community and there's a large community of disability advocates. But if you do your part, you're helping more than you know. And I like to think of it almost as a tapestry of advocacy that we're all working together to make one beautiful picture. As I'm looking at Vanessa's background, which is beautiful picture.
VB: I love Tapestry of Advocacy.
CD: I love that too. That's that should be the title of our next webinar. Yes. Workshop. Karen, I love it. All right. So, so we are we are keeping that name. We are keeping that name. That's amazing. So well said. One of the things that it brought to my mind, Karen, and with, self-care is it's important to find your village of support and, and having that trust, like you said, that there's other people working on other issues, because one of the things that I'm finding now is I am involved professionally, but also as a mom and a parent and a woman and as a citizen is I feel like I am on 24 hours a day, there's something to be worried about and concerned about. And I my nature is to just say yes to everything and fix everything. And I, you know, and that's not healthy for anyone. And I can't possibly do everything. So, you talked about earlier about grace. Karen, having grace with myself is a difficult lesson. It's, something that I am working on, that I can't do everything and be everything to everyone, every minute of the day. And maybe that comes as you get older, that you start to realize that I just won't mention my age on this, you know.
KB: it's the same as mine to a pretty quiet.
VB: We're all the same age.
CD: Yes, we're all but 25. We're all in. Yes, exactly. Yes. We'll go with we'll go with that. But it is having that grace and, you know, and finding your niche. What is your niche? So, if you're going to focus on one policy area that's great, and you be 100% at that policy area. And the same is with, my friends on this, podcast, Miss Vanessa and Karen know that I tend to volunteer for a lot of committees and councils.
KB: Nooo.
CD: Yes, quite a few of them all at the same time. Can you believe that? I've shaved off, like, five of them there. Oh, yes. There's still about. There's a lot that I'm still involved with, but, I have, you know, shaved off a few. And it's because, being a part of these committees and councils, they're, it's educating for me. It does fill my bucket. As they say, it is something that I enjoy. For me. I don't go to yoga. I join a committee. That's what I do for me, I probably should do yoga, but I join a committee in that that fills my bucket and that works for me. But I would just recommend to folks, have grace with yourself, find your village of support. And, know that, as Karen said, anything that you do is helping to weave the tapestry of advocacy.
VB: That's great. Thank you both so much for joining me today.
CD: Such a pleasure.
VB: I would love to have your back. So maybe we can talk about other things like the budget when I’m sick of talking about the budget. But yeah. Thank you. Thank you all so much for coming.
CD: Thank you, Vanessa.
KB: Thank you, Vanessa.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV.
We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 27: You’re Doing so Great!
In this episode, Seana Halberg and Pat Vincent-Piet discuss their recent experiences with othering, how to ground yourself with all that is happening around us, and how they are getting through tough times.
Episode 27: You’re Doing so Great!
Episode 27: You’re Doing so Great!
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities.
What does that look like? And how can we work together to make our world a more inclusive place?
Patricia Vincent-Piet (PVP): We’re back here today with another episode of That’s Inclusive! from the New Hampshire Council on Developmental Disabilities. I am Patricia Vincent-Piet, a Council Member. I am here with my fellow Council Member and friend to discuss the issues of today affecting people with disabilities here in New Hampshire. Seana thank you for joining me.
Seana Halberg (SH): Thank you, Pat. I am Seana Halberg, I am also a parent representative on the Council for Developmental Disabilities within the state of New Hampshire, and I am happy to be here, Pat, with you, today.
PVP: So, a lot of stuff has been happening, Seana, lately. You and I have both shared that we feel like we’re under attack as a community. People with power and influence have made people with disabilities out to be responsible for all sorts of issues. Anything from a plane crash to any kind of destruction in the government. And so yeah, we’re feeling a little down, down in the dumps. But what I’ve been thinking a lot about lately is not only how dangerous it is when someone in power called out people with disabilities as being a danger in their position, as if somehow the FAA employing people with disabilities caused a plane crash. That paints a target on our backs right there. That makes us everyone’s enemy.
PVP: Part of the problem is when I have called out people who have treated us with pity and who have used images of people with disabilities for their own gain, treated us like children, inspiration porn. When I have called them out, actually people have gotten upset with me. They have said “well at least they’re being kind. They are teaching people to be kind to people with disabilities.” At a time when the rhetoric from people in power has been dangerous and has made people act aggressively towards people with disabilities, I try to explain that you don’t use pity to thwart aggression, it doesn’t work that way. If some sees someone as an eternal child, and they think these people are being hired for jobs that they’re not qualified for then they’re afraid. If their only image of those with a disability is Jimmy laughed on Chaos and Kindness, and they think the FAA is hiring a bunch of people with disabilities they don’t understand the diversity within the disability community. They don’t understand the wide range of talent and ability even among people with all disabilities. That makes me afraid.
SH: I think there’s a couple things I was thinking about as you were talking. I think what gets lost on people when people say “well at least they’re being nice” is there’s something called microaggressions. Microaggressions are as painful as more obvious and explicit aggressions. They are a lot harder to pick up on, but they’re often as dangerous and as harmful as what we would consider a typical transgression would be, right? And I know that in our lives, what has been the most damaging as been the microaggressions that happen day in and day out in our family. I think that its really important to realize is that takes away power. These microaggressions of infantilizing and talking to people as though they are young children, that are autonomous adults or teens, takes away their power. If I think about these last couple weeks, is a sense of powerlessness. If I really sit with my nervous system right now, as we talk, and as the days go on and the news continues to ripple out, what I feel is powerless. And what I think the goal is of all the things that are coming out is just that. I think it is to make us feel powerless. And I think the microaggressions are a subtle, but almost socially acceptable way to commit harm.
PVP: I totally agree with you. I think a show like Chaos and Kindness softens people up to people as perpetual children, makes it easier to swallow them as a danger to society. When Jim and I are in public, and someone treats him like a child, which they often do, they see it as being kind, but you’re right it is aggressive. Coming up to someone and touching them on the leg and asking them intimate questions, when you’re a perfect stranger, that’s aggressive. And I don’t think people really understand that at all. People don’t understand that to us, it is almost worse than having someone come up and yell at you. Because if someone comes up and yells at you, you know how to react. If you’re aggressive back, that’s understandable because they’re being aggressive to you. If what they’re doing is cloaked in kindness, and you’re aggressive back, you’re the one in the wrong. You’re the one that’s causing the problem, and that’s a great way to make the person with a disability the problem. I’ve struggled lately because there is so much coming at us, and like you said, the purpose is to overwhelm. So how do we look at what’s coming at us and sort it into: this I can do something about, but the rest of this stuff, I need to just sort of let someone else take care of. Do you have any way that you think about those things to decide what’s worth going after and when to preserve your peace?
SH: Most definitely. You just talked about Jim for a second and I am not sure everyone knows who Jim is because I am not sure everyone does.
PVP: Actually, most people do. Jim is my husband; he has cerebral palsy, and he uses a wheelchair. Because he needs help with most of his activities of daily living, so I have to help him eat. So, in a restaurant it can get very interesting when people see me helping him eat. Some people make all sorts of assumptions on his mind based on what he can do physically. And those assumptions turn into actions where he is infantilized and objectified.
SH: Thank you. I just wanted to make sure that those who are listening know who Jim is.
PVP: No, that makes perfect sense.
SH: And he is infamous so I should have assumed that most people know him. Something that came up when you were talking that I think of often is that the intent does not equal the impact. Often, I think with these microaggressions, the intent is not necessarily to harm, but the impact is that you’ve cause harm. So that came up for me. The other thing that I was thinking about when you were saying so much information is coming at us right now and the theme of feeling powerless. I think a way for us to take back our power and really have some measure of control is that we put good boundaries right now around ourselves, taking care of ourselves and taking care of our community.
SH: I know right now if I did not have my community, especially my allies in the disability world, I would feel much more powerless. I have a net of people on the ground working within our local community and our state. The reason I am bringing this up is that I think it is often important for us to focus on what we can. We cannot do all of the things and function in our daily lives. We have to function, and we have to get up. Many of us have to go to work. We have to take care of our loved ones, and we have to take care of ourselves. So, I think really thinking about the consumption you have right now in terms of media and news is really essential. I think the time of day is really important to think about. What I have talked to some people about is not right when you wake up and definitely not before you go to bed, and maybe picking out one time of day when you actually have time, and carve out a time of day when you tend to be able to take in information that may be jarring for your nervous system. For me, that time of day feels naturally more like late morning or lunch time. I feel like I can carve out a little bit of time, but also give myself some parameters on how long I will look at the news, or look at social media so I don’t get into a spiral. The other thing I think that’s really important is making sure that you’re prioritizing yourself right now because I think we are intentionally being exhausted. I think we are intentionally, the disability and the other marginalized communities when the news came out about the plane crash and the FAA, I think we’re intentionally being put in harms way to meet an agenda. So, I think its really critical that right now we make sure our cup is full. That means finding joy in our everyday life. It means remembering the little things that bring us peace, calmness, and connection. And for me, connection right now is not only my family, but its also my community of movers and
shakers that make me know that I’m doing what I can do, but within a range that feels manageable so that I can work on my everyday life as well.
PVP: That’s awesome, that’s some really good ideas and practical things that people can do to minimize the effect of this river of whatever that’s intended to overwhelm us, and its really easy to get overwhelmed. I really appreciate what you said about being very careful about the time of day when you are consuming. Because we live in an age when if we let it it’ll come at us 24/7. And we need to find a way to help others who have difficulty filtering that stuff, to filter it better. I especially liked how you talked about finding joy in everyday life. What’s something specific that you’re doing right now to find joy?
SH: Yep, definitely. So, for me, personally, I love to move my body. I find that movement in any form is really therapeutic for me because I have always struggled with anxiety and depression, so I don’t make a lot of healthy feel good chemical naturally. So, I am making sure that I move my body in whatever way feels good. Some days that’s just walking outside, some days that’s sitting in the sun, sometimes that’s going to the gym. The other things that I like to do are listen to a book on Audible. That works for me, reading for other people works for me. My morning coffee, as funny as that is, brings me a lot of joy. I joked, I think you might have seen it, I joked the other morning when my husband raised the blinds that I was really happy that the sun rose because that’s how dark I was feeling. When I saw the sun rise, Pat, it was so grounding to me that no matter what is threatened and what is pulled away or what is happening outside of my bubble that in this moment I can be present. Reminding myself during that cup of coffee that I am present and safe in this moment, sometimes is what I can come back to. I really struggle with nervous system regulation because of not only my anxiety and depression, but some of my person background, so I am really working on the things I shared, doing myself. Because it’s really critical right now that I don’t get exhausted because we have a lot of work to do within our state on protecting the rights of disabled individuals. I am really trying to remind myself ot just be present and take in as much light as I can. For me, that’s really important this time of year. So, stepping outside, feeling the sun on my face. When I’m outside, even if it’s really cold, a couple minutes of being outside, taking in what we smell, what
we see, what we feel on our skin, and doing kind of sensory check-in can be really, really calming. So, between movement, listening to books on Audible or reading, for me, I was just doing a puzzle right before I joined. My daughters home on a snow day, and for us puzzles are a really bring us to the moment type of activity that we can do. So those are things that I kind of focus on.
PVP: That’s great and I need to do all the things too. I’m really bad about getting in these dark spaces, feeling overwhelmed. I have COVID today. You try to do all of the things, but there is no way to stay completely well all of the time. The thing that helped me when I was actually listening to a podcast this morning and it was Ezra Klein, and he entitled it “don’t believe him”. He was talking about the concepts of the Executive Orders. He said something really interesting, and he was talking to someone in the government and this person understands the levers really well was saying “I would be more concerned if he was going slowly and carefully. If he was getting people on his side, if he was creating coalitions, because then we would be talking about permanent changes”. If you look at the back in the past of Executive Orders and how many have actually stuck, a very small percentage of Executive Orders have actually ever become long term policy, a frighteningly small percentage. And I was like “oh, yeah”. Presidents come in and say all sorts of things. I remember when Biden came in, he had a bunch of Executive Orders I thought were great, most of them did not come to pass. And so, that was very like “oh yeah”. Executive Orders do not law make. Right? Do not permanent policy make. And so, that was a reminder to me to not pay attention so much to all the messes. Its more, its he building coalitions? And if he’s not, then that’s a signal that most of what he’s doing won’t last. I take a lot of consolation from that.
SH: Yeah, most definitely. And I think that’s really impactful because I’ve been noticing to find those little glimmers in the news, there’s a lot of stuff that’s happening at that state level that has been really hopeful. A lot of people have been logging on and opposing or affirming bills. As much as things are really scary right now, I think a lot of people are rising up and participating that may have always sat on the sidelines. I think people are recognizing that their voice matters. And that’s something that’s really hopeful. I think that the more
people realize that we can come together and that we can make change, again, that gives us that power that we feel like we’re missing.
PVP: Do you have anything else you want to share before we finish?
SH: I think the only other thing that I’ve been thinking about that’s really come up for me is making sure that you have somebody to talk to. Making sure you have support. Not everybody can afford going to a therapist. Not everybody can get to a therapist. Now there’s a lot of online opportunities. But it doesn’t have to be a therapist, just somebody that you trust. I think right now more than ever, we are more connected than we’ve ever been, but sometimes it can actually feel really lonely. Which is funny, right? Cause look at us, we’re online, we’re virtual, but we’re not together, right? I can’t give you a hug. I can’t share a cup of coffee with you. As lovely as it is to be able to connect, it’s a different form of connection now. I really want to think about for everybody that’s listening just making sure they’re being honest with themselves about how they’re doing, and it’s okay not to be okay. And then really just making sure that you have the resources you need to be able to reach out to somebody if you’re feeling overwhelmed or despaired or scared or alone. That’s the only other thing that’s coming up for me.
PVP: That’s great, Seana. So, I think the takeaways are: watch you media intake, get a lot of sunshine and healthy food, movement if its possible, whatever that looks like, and remember more people are on your side than against you.
SH: And taking that power back. Any control or power. If there’s something just small you can do to make you feel more grounded. Just really also honoring the feelings you’re having, that no feeling is wrong, they’re just information. That’s all feelings do is provide information. When I said at the beginning, that I’m feeling really fearful, that’s just giving me information that I really need to remind myself what I can do.
PVP: Right, right. And whatever you can do, whatever you do do, that is enough. I think a lot of us, especially mothers and wives struggle with feeling
like it’s never quite enough. And whatever you’re doing now is more than enough, you’ve done so well.
SH: 100%. And even if you just wake up that day, keep on your pajamas all day, and don’t even brush your teeth, that’s okay. We have many days like that.
PVP: Yeah, oh yeah, we do too. Keep up the good fight, remember we’re on your side, and we will see you next time. Thank you Seana for taking with me today.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV.
We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 26: Surviving the Holidays with Seana Halberg and Pat Vincent-Piet
In this episode Seana Halberg and Pat Vincent-Piet discuss the holiday experience in a neuro diverse household and share other insights into their daily lives.
Episode 26: Surviving the Holidays with Seana Halberg and Pat Vincent-Piet
Episode 26: Surviving the Holidays with Seana Halberg and Pat Vincent-Piet
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Patricia Vincent-Piet (PVP): Hello everybody, and welcome back to another episode of That’s Inclusive. I'm here today with a good friend, and a fellow member of the New Hampshire Council on Developmental Disabilities, Seana Hallberg. I'm saying your last name correctly.
Seana Hallberg (SH): Correct, it is.
(PVP): Seana just joined the Council recently. But as we've had multiple conversations, we found that we have a lot in common, a lot of things to discuss. So, in the new series, on That’s Inclusive!, Seana and I thought that maybe you guys would like to hear some of our conversations, and participate, but at least we’ll have fun. So, we hope that you guys will have fun with it too. So, Seana, welcome, can you introduce yourself to our audience?
(SH): Sure, thank you, Pat. So, my name is Seana Hallberg. I am a newer member to the New Hampshire Council on Developmental Disabilities. I live in the Seacoast, New Hampshire. I have a neurodivergent spouse, and I have three children, three teenage children. And my eldest and my youngest are both disabled. They're both multiply disabled. And I have a history of a mental health background. And I actually have a new diagnosis of being neurodivergent myself. So, we are a very, neurodiverse household.
(PVP): Well, that is great. Thank you for sharing that with us. We thought today, well we’re recording this January 2nd, the day after New Year. You won’t be hearing this until February, but we thought we’d talk a little bit about our experience of the holidays. I think Seana and I both preferred to discuss what is on our minds, what recently happened, we find that a much easier thing to process. We’re going to talk a little bit today about what celebrating the holiday, whatever holiday it is you choose to celebrate, is like when you’re doing it with a disability, or you have a child with a disability, and how celebrating a holiday may look different for us than it would for a quoteunquote typical family, wherever that is. So, Seana, can you share some thoughts? Do you celebrate? What do you celebrate? How? How do you put the holidays differently from, maybe societal expectations of how one approaches the holiday season?
(SH): Yep. Thank you. So, first of all, I want to say that my first inclination is to say, I'm so glad the holidays are over. And when I say that, sometimes I think for certain people it gives them pause. Because I do think that there is a certain expectation around the holidays that they will be really joyous and f illed with, community and family and events that we might look forward to, like year round, having, traditions that a lot of families participate in. And I know for our family, my husband and I, both, we didn't grow up religious per se, but we celebrate. We do celebrate Christmas, but it's more of, consumer based Christmas, I think. I hate to say that, but it's not rooted in a lot of tradition. It's more like the way that we were raised that you get gifts.
(SH): And there is Santa. My kids are much older now, so that's not the case. But, you know, I think what I wanted to share today is the way that more invisible and hidden disabilities can play out around the holidays and the expectations that other people have for our families, and how we will show up.
(SH): A long time ago, after my kids were diagnosed. So, my kids, are autistic, two of them are. And my children, we had to fight for our diagnosis, which is a whole different story. But my son was later diagnosed, almost 14, and my daughter was 12 when diagnosed. But I knew for years we couldn't. Going to pancake breakfast and sitting on Santa's lap never happened for us because there was so much sensory overwhelm. We couldn't eat the foods that were provided. Going and sitting with somebody dressed in a costume was absolutely terrifying for them, you know? And I think, you know, the other thing that, I want to touch on, too, and the only reason I want to say it right now is that I often forget if I don't say it right when I'm thinking it is that, I think comparison when you're living this life, it's really hard to not compare, especially with the advent of social media.
(SH): A lot of the things that other people go and do, we just we can't because they don't end up, we don't end up feeling successful. We end up repeating sensory needs within the family. You know, loud environments can be hard. The food that's provided can be really hard. And I think that a lot of times with more hidden disabilities, I know for myself, I got a lot of pushbacks from family and that it was something that I was doing, that I was permissive or that I, wasn't strict enough or that I and how it shook out was that I was modifying, my parental strategies around what my kids needed, and that was not common. That was not common to see you not have, you know, sitting at meals is something that's really hard for my family. It's gotten better as they've aged. But if you can't sit for a holiday meal or you can't eat what's provided, you can only eat the rolls. People have a lot of feelings about that.
(SH): If people have a lot of feelings about what your children eat. People have a lot of feelings about your children not opening gifts in front of them. A lot of children, gift giving is extremely overwhelming because there's a lot of eyes on you, and there's a lot of expectations, how you'll respond, right. And so, I think that what I've realized in the last couple of years is that I don't plan anything.
(SH): Our holidays are just us. In a lot of ways, it's lonely. You know what I, when I, said this morning before we started recording, the impact of isolation and the lack of community at this time of year can be, I think, the hardest. And I think it's the hardest when I see all of the images about what people have done and accomplished and seen and all the togetherness and all that, that. And of course, there's sides we don't see. There’re meltdowns we don't see and there's all of that. But like, even for us to go and have like a simple meal out, can be like the only thing we can do in a day because it's so exhausting. And we have had to pull it all together, kind of like it's like an Olympic event. So, I think I'll stop. I think, I hope that was enough information.
(PVP): Yeah, I get that. Well, that really good insight into there everything goes into trying to effectively meet the needs of your children and then meet your own needs at this time of year when society and the people around us have the expectations of what the perfect holiday looks like, and what kids should or shouldn't be doing. As a parent, and this is not a holiday related story, but as a parent with a disability, I had a similar thing happen.
(PVP): With a lot of expectations, you should helicopter parent your children. My child was 5 years old a running all over the neighborhood without me, and having fun and going to see neighbors. And I had parents who would say, how could you do this, it is dangerous? How could you do this? And like, well, for me it’s like I either let her be her and be her social butterfly self, I don’t have ethe physical capacity to follow her all around the neighborhood. Or I try to hem that in and keep her physically in the house with me. Which feels almost abusive to me when her nature is to be out there and be in all these different situations. I gave her the tools to be safe, right? I give her the tools to understand not to go with some people, what to do if someone tried to approach you.
(PVP): She got a telephone at a very early age. Which again a lot of parents will be like “you’re giving her a cell phone early”? Again, I can’t follow her around. This is a way for me to keep track of her. So, I understand when other people are suggesting what your kid is doing is not acceptable, like not opening gifts in front of other people. It’s like, I get it when I give a gift, It's nice to see how people react. Like. But come on. This is option. You know, you can always open it on your own say thanks I love it. So, for me, I grew up very religious, my father was a minister. So, he had a problem with the secularization of Christmas. So other people who grew up in evangelical homes will know issue around “it’s too secular, keep Christ in Christmas” and all the rest of that. He was sort of one of those.
(PVP): So, every year we had the same conversation. I think he got going just cause he knew it would get me going. He would go “I don’t think we are going to get a Christmas tree this year.” And every year I would go “Noooo, we have to do a Christmas tree! Are you kidding me?” Every year we would end up getting a Christmas tree. In a way it was my parents who tended not to do the traditional Christmas thing. When I had my daughter, I turned into like the Christmas fairy. We did all the things, we baked the cookies, we made all the crafts, the house looked like Santa Claus had sneezed all over it. I mean, it was insane. But then aging with a disability, those things got so much harder. It got so much harder to do all the things. I eventually had to sort of put those things away. We used to have like 25 people at the house for Christmas, it was crazy. Now, when its just the 2 or 4 of us, depending on who’s there, I’m like “this is so much better, what was I thinking?”. 25 people at my house? It honestly was not that enjoyable; I know Jim hated it. But I did a lot of things because those were the things you do. That’s what you do, you invite people over, you have a big Christmas tree, you decorate, you make cookies. You do all these things. When I was younger and I didn’t do them, I always felt like I was missing out. But now that I’ve done them, I realize actually I wasn’t missing out. This isn’t that great.
(PVP): So, I think the holidays, like you said, “oh thank god they’re over”. Actually, my physical therapist said that to me yesterday “the holidays are over!” and she threw her thumbs up. So many people feel that way. Like so many people, honestly, when you talk to them and say “are you glad the holidays are over?”. Almost everyone says “honestly… yeah.”. And so, I think when people state “I don’t understand why you’re happy the holidays are over.”, I wonder if they’re being honest with themselves. Cause I think most people, when they’re honest with themselves, say honestly I don’t enjoy this. Actually this is too much. Actually the only reason I put time into this is because society told me I should be enjoying this. Cause Mariah Carey is singing her little song on the radio, so I have to be in that space with her. Because otherwise people are going to look at me funny.
(SH): I have so many things that came up for me as you were talking. I am going to try to remember them. Of course, I didn't bring a piece of paper, because that would mean that I would have, you know, the forethought to do that. But.
(PVP): I'm with you.
(SH): Okay. So, the first thing that comes up for me is the difference between a parent caregiver who has mobility challenges, and then the idea of helicopter, you are not doing enough to oversee your child was, you know, physically able to navigate their space. Is a child who learns through exploration and moving their body. And so, you're oriented to the world completely differently from your daughter. And the expectation is that you are not parenting her in the way that society deems appropriate, because you cannot navigate physically in the way she can. So, I hear you saying that, and as you're saying it, I'm thinking, oh my God, because my experience is the opposite.
(SH): So, my children, another example of the way that the hidden versus more visible disability, sometimes, sometimes there's so much overlap and sometimes they're just completely different experiences. I, when my children were little, I did not know why they could not sit and eat. Now, I understand that they learn, and they process information, and they keep their bodies regulated by moving their bodies, which has been a huge hurdle at school as we know.
(SH): Right. Because right, we need to sit. And so, when they were little and I have three of them, I would move around with spoons and feed them as they moved. And I just did it like I acclimated to what their needs were. And I, I didn't really give myself slack. I kind of just thought that's what everyone did, because that was my experience. And I had a family member suggest that maybe they could not sit at the table because I was such a helicopter parent. And so, when I heard you say that I was like, well, I couldn't win on the opposite side because I was doing what their body needed to do in order to eat. I mean, in order to eat, if I forced them to sit, they would not have eaten, right?
(SH): And a huge way to have like a huge meltdown, they would have been averse to the food. So that was the first thing that came up when you were talking that I was like, oh my gosh, so different. The next thing I was thinking, I think is, it had to do with caregiver burnout. And the holidays specifically, regardless of what you celebrate. I heard you talking about having, like, a bunch of people and that pairing down and that the expectations, I'm trying to remember back, and how you eventually, like, let those expectations go and you're as you're aging how that you know, it really impacts, our ability as caregivers. That's what kind of came up for me too. As that as I am an aging parent. I'm still I'm very young, but now I have developed chronic health conditions. My mental health has really been impacted from a lot of the trauma we've experienced and the fact that, I've had to advocate so much. And, again, when we talk about lack of community and lack of understanding, and even within our family systems, the lack of understanding of our experiences, my health, has taken a huge hit. (SH): And so, what I noticed, this holiday was I didn't have any stamina to do anything. I, you know, as the matriarch and in very patriarchal society, it's kind of been my role, and that is not to negate my partner at all, but there's a whole host of reasons that I take on a lot of executive functioning within our household. I, I felt the holidays impact me really greatly in terms of my mental health and my physical health, because of the expectations of the gift giving and going out and purchasing things and wrapping things and making sure certain family members had the things, and oh, I have to food shop because you need to prepare a meal. And I often, in our family, prepare multiple meals because my family cannot eat the same things.
(SH): And so, there's always the thought of, okay, well, I don't I can't just make one traditional meal. I have to often do multiple meals, for our family. And so that stuck out to me. I'm trying to think of the other. I guess that's good for now. I think that's good for now. But I had more thoughts, but I just I can't remember them at the moment.
(PVP): I thought as a kid, that life let me out, right? I grew up in the 70s and 80s when most kids with disabilities, and unfortunately its still happening, but when most kids were in segregated classrooms. My father said to them “her disability is so minor”. He even didn’t recognize me as having a disability, just a “minor difference that didn’t stop me from doing anything everyone else does.” So, but in a way, it did, right? I was in typical classrooms, I never knew anybody else with a disability growing up. And so, I would always just go play with kids. So, any sort of little connections I could make to typical Americans to be being a normal American kid, I wanted with everything I had to make that connection. So, if all the kids had Christmas trees, I had to have a Christmas tree. If all the other kids were getting roller skates for Christmas, I had to get roller skates for Christmas. And what a disaster that ended up being.
(PVP): So, I thought that the closer I could get to whatever normal is, the better of id be. As an adult with a disability, I’ve realized that most of people over there in the “normal” they are miserable. And actually, you know spending time outside of the normal was actually beneficial. I actually grew much calmer and a much more mentally healthy environment because my father, primarily, decided, we don’t have to do all the Christmas stuff, we’re fine outside the normal. You’re fine outside, we’re all fine here. There were certain things in which there were certain ways to walk and talk. I did a lot of therapy growing up. Now I am undoing some of that therapy in other therapy. Learning what the effect that physical and occupational therapy had on my mental wellbeing as a kid. I understand that sometimes when its just the 5 of you, it must feel kind of lonely when you see the pictures of the big groups. Especially to someone who had been a part of your traditions that no longer can be because it puts you in a really unhealthy space and what do we do with that. Part of the reason we want the holidays to be over is because we want to go back to the space when they’re typically not a part of our space. So we don’t have to think about the fact that they’re missing again/
(SH): Yeah. I wanted to, again, when you were disclosing about trying to appear as typical as you could and, having the, the items that your peers had, etc. What I kept thinking about is, kind of that, that role for my non-disabled child and the impact that like experiences like the holidays, the experience my non-disabled child has around the holidays. And just what it is like growing up as, the only non-disabled child in a home. Because the majority in our home are disabled and the majority of individuals in my home are autistic. And so, you know, there's a lot of things that this brings up, but my non-disabled child misses out on a lot of things because as a family, those things are too hard for us to navigate.
(SH): And so, there is always a sense that of guilt, I think, on my part. That I can't give him the experiences that I feel like I want to, because the number of the disabled family members in, in our house outweighs the number of nondisabled. And so, it made me think of that. It made me think of, you know, there's for me, my non-disabled son is a senior. He is going to be going away to school, next year. And something that's also been coming up for me. When I think about the holidays, too, is, this is possibly like our last holiday where he's, like, home with us.
(SH): He's going to come home, you know, I mean, he's going to come home from school. That's not lost on me. But for the first time, in years, we haven't been in crisis. You know, the first time we came out of crisis was like, maybe six months ago. And so, things are, for the first time, I'm able to take a breath. And my son is going to graduate in spring. And I've missed out. I've missed out on a lot of his childhood advocating for his siblings. And by proxy, he's had to be very independent. And, you know, people will say, oh, that's great. You know, that's wonderful. He's going to be resilient. It's not lost on me that he has a lot of big feelings around me, around the attention I've given him, around the things that, he's missed out on.
(SH): You know, we're looking at college for him, and we're looking at college for his brother who's disabled, who's, a bit older than him. Financially, his brother is going to need far more support. The institutions that my eldest son can go to are not the same institutions that my middle son is looking at. And so, as always, the financial challenges of meeting my disabled children's needs are much more cumbersome than my non-disabled son. And so, once again, I'm kind of looking at how do I tell one kid you can I this is the amount of money I'm going to spend. And the other kid, well, because we need to do this for your brother, there’s are no other institutions that can support him. And it's so expensive. And there's such a privilege, which also, this is a whole other conversation because that's such a privilege to be even able to think about sending a son or anyone to a post-secondary learning opportunity that's so f inancially burdensome.
(SH): It's once again, like, I feel like and I'm taking things away from my nondisabled son because I have to, I have to do these things for my other disabled children to set to have somewhat of an equal playing field to my non-disabled child. It's still never going to be equal. But how do you explain that to a 17 year old? I mean, how do you how do you make sense of any of these things as a 17 year old? So, I know I'm digressing from the holidays, but again, these things come up for me in the holidays. Yeah.
(PVP): I think maybe we should think about talking about that, right. How do, and we’ll put this aside as a topic. How do people who don’t experience disabilities, in a family where they’re the minority, so that would include my daughter. She was the minority in our family, even to some extent our extended family. How did that affect them? She has a whole different perspective now that she is, lord help me, 28. A lot of the things we’ve talked about recently has really surprised me about she remembers things. So I think that may be a topic for us to discuss on a future podcast. How do we as parents of kids with disabilities, as parents who experience our own limitations, how do we interact with our kids that don’t experience those limitations.
(PVP): I feel like this has been a great talk, and we’ve talked, you and I, so many times. We could put Joe Rogan to shame and make a 3 hour podcast, but I think we can draw it to a close for now. Seana and I are going to be talking together regularly and inviting you all into our conversations. I hope you enjoyed our inaugural talk. I don’t know if we’re going to come up with a name, for now I’ll call it “Pat and Seana talk”. We would do this again so thank you Seana for joining me, thank you for giving up your time like this and I look forward to our next conversations.
(SH): Thank you Pat. Thank you for having me and thank you for sharing part of your life and your story with me. I appreciate you.
(PVP): I appreciate you too, thank you. VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 25: Accessible Transportation with Steve Workman and Ryan Donnally
In this episode Chase talks with Steve Workman, Director of Transport NH and Ryan Donnally, Advocacy Coordinator at Granite State Independent Living about transportation access throughout the state of NH.
Learn more:
Granite State Independent Living (GSIL) Transportation Services
Transport New Hampshire
Keep New Hampshire Moving
Americans with Disabilities Act (ADA) National Network Ground Transportation Fact Sheet
U.S. Department of Transportation Accessibility Fact Sheet
Federal Transit Administration (FTA) Coordinating Council on Access and Mobility (CCAM)
Episode 25: Accessible Transportation with Steve Workman and Ryan Donnally
Episode 25: Accessible Transportation with Steve Workman and Ryan Donnally
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Chase Eagleson: Hello and welcome to That's Inclusive podcast, brought to you by the New Hampshire Council in Developmental Disabilities. Today our topics and being inclusive and accessible transportation. My name is Chase Eagleson, I am the Policy and Planning Coordinator for the New Hampshire Council. With me, I have...
Steve Workman: Steve Workman, Director of Transport New Hampshire.
Ryan Donnelly: and Ryan Donnelly, Advocacy Coordinator with Granite State Independent Living.
Chase Eagleson: It's fantastic to sit down with both of you. As we discussed before, you guys haven't met before, but it's great to bring people together. So I guess we'll just start it off. You know, New Hampshire being a state that is, you know, notoriously difficult to reach out to residents in, not a lot of people want to answer surveys, emails, phone calls, door, anything.
Chase Eagleson: What are your organizations doing to ensure that the transportation services and resources already accessible and available to Granite Staters are both widely known and used? Either of you is welcome to start.
Ryan Donnelly: So, Granite State Independent Living participates on the State Coordinating Council and Regional Coordinating Council to develop our operating structure and advance opportunities for accessible community transport.
Ryan Donnelly: And in addition to that, we also work very closely with the statewide Independent Living Council, which in fact I'm a member of. And one of our priorities for our upcoming three year state plan is a focus on really getting the word out on what services are available and addressing any issues that folks are running into with the services that we have in the state.
Chase Eagleson: That's fantastic, Ryan. Steve. Steve Workman: Great. Yeah. I think I'd like to start by following up on some of the the two bodies that Ryan referred to. So our State Coordinating Council for Community Transportation is a statutory board. It's appointed by governor and council and then by statute to have representatives from state agencies in addition to stakeholders, around the table.
Steve Workman: I actually serve on that council, and I'm the secretary, so I'm part of the leadership for that. So that's the macro level at the at the state. However, we need to also bring that down on the ground into what we call our community transportation regions, which is basically how we've carved up the state into into eight regions to make it more manageable.
Steve Workman: Each one of those regions has a regional Coordination Council, and the way this is supposed to work is up at the macro level, at the State Coordinating Council, we are thinking about coordination. We're thinking about policies and trying to address needs and help remove barriers. We're also really focused on trying to bring state agencies together, because not one state agency holds all of the funding or responsibility for providing transportation services.
Steve Workman: So right there you can see that we have to speak. We can't remain in our silos. And then after that happens, that flows down into our regional coordination Council, because this is where the rubber hits the road, so to speak. So this is where our providers are. This is where local community members and local service providers, non-transportation providers, exist.
Steve Workman: They know what's happening in their communities and where the needs are and where the gaps and services exist. So at that level we get a lot of feedback about how things are going there. And there's a lot of recruitment to bring people to the table so that you can solve things for your region. And then that flows up to the state so that we can figure out how to facilitate that.
Steve Workman: So within that structure, you have my organization, Transport New Hampshire, and I do a lot of advocacy. But one of the things I try to do is build coordination and pull folks together across agencies, different stakeholders. As a result of the work that we've done, particularly over the past four years, we've been able to transform how we deliver the services.
Steve Workman: So, two of the services that I think are most critical that we get out into the community, both for the professionals that are providing services, but also the general public, is our Keep New Hampshire Moving website. We just launched that in June first of this year. It is the first time New Hampshire has ever had a single website with a searchable database for transportation options.
Steve Workman: So that includes things like busses, volunteer driver programs, paratransit services. There's stuff in there about air and getting to our airports and our inner city busses, and that's a stop where people can first learn, because unfortunately, there's a lot of jargon in our industry, and sometimes because of funding and policies, you have to call it what it is, the jargon.
Steve Workman: So instead, what we've tried to do is first educate folks so they can learn about the different types of services and how they're delivered and whether there's an eligibility requirement. And then there's that searchable database component. And the most important thing or the best filter I think that the public can use is the where do you live? It's a drop down filter where you can put your town.
Steve Workman: And this now shows you what services are operating within your community. Then you can do a further drill down for that. So we've just started to really push that out there. So we're making a big effort to train providers. So these are state agency folks. These are other service providers, health care providers, education providers so that they know the resource.
Steve Workman: We've worked with things like Care Link and , so that they understand that we now have a database that is kept up to date regularly, and that is the place to find the most current services. We're also really embarking on trying to get the word out to the public now. And so this is where we're looking to municipalities, different service provider agencies to make sure that they link to the site, Keep New Hampshire Moving.
Steve Workman: Its the name of the site. It's also the web address. So it's keepNewHampshiremoving.org. The last thing we did and these are two big accomplishments that happened almost simultaneously, is that we put in a statewide mobility manager network. So what is a mobility manager? A mobility manager is like a social worker or a case manager that you would find in other sectors. Steve Workman: And they're there to, they have multitasks, but they're first thing in terms of helping the public is to help people find transportation. Now, it's a tall order in New Hampshire. We're going to unpack that a little bit later. But those two resources, we feel have been our biggest step forward in quite a long time, and we have plans to build upon those successes.
Chase Eagleson: That's awesome. I mean, I was at the, I don't remember what month it was, but the SCC meeting when they first started talking about Keep New Hampshire Moving, well once it was released, Keep New Hampshire Moving. And I was kind of astonished because I was just kind of getting into the disability world. I hadn't spent that much time in, and I all the complaints I heard was, I can't get transportation this, I can't get transportation to that.
Chase Eagleson: And then knowing that there was this huge, you know, vast supply of transportation, we just, you know, as I said in the initial question, people didn't know where to look. And there it was. Fantastic.
Steve Workman: Well, I can take it one step further. When our mobility management team, so each of our regional mobility managers and our state mobility managers were working, with me to create the inventory of services.
Steve Workman: We were surprised at how many there were. So that just tells you how we had sort of, our services were fragmented or sort of patchwork, and we needed to do better. And this was really step one.
Chase Eagleson: Oh, I congratulate you on that. I mean, I've been on the website. I'm sure. Ryan, you have too. It's exactly what I was looking for.
Chase Eagleson: I'm sure. Exactly what a lot of granite States were looking for. It's beautiful to see.
Steve Workman: Thank you. And and we have plans to make that better. There's still some content on the site. We're continually updating. And of course, the key is making sure that the contact information about the actual transportation provider stays current. Otherwise, it's not worth.
Chase Eagleson: Yeah, no time makes % of sense. Again, fantastic to see. I know I grew up in New Hampshire from Hampton. I've been here my entire life, and pretty much my entire life has been stuck in the same area because I didn't have a car for a while. So it was a lot of just, I don't have anywhere to go.
Chase Eagleson: I can't go anywhere. And I'm sure a lot of residents, especially up in our northern sections where there's not a lot of very populated areas, don't see a way to get down south or a wayto get to the state House to advocate is, you know, I know Ryan's always there and I'm always there. And Steve said, you do some advocacy, too.
Chase Eagleson: I mean, it'd be great to hear from the voices up north. And I think that is Keep New Hampshire Moving is going to have a huge impact on that.
Steve Workman: It would. And we know that there are people in need of these services throughout the state. And and, you know, of course, we're a real rural state, even with our urbanized areas.
Steve Workman: They're still smaller than a lot of the larger cities you see throughout the country. And so the challenges inherent in that, it's not feasible to say that everybody is going to have a public transit bus service like we down on the coast. I grew up in Portsmouth. We have coast bus down there and throughout there's Manchester Transit, Nashua up in the North Country, though the transit agency, which is through tri county cap, that actually looks a little different.
Steve Workman: They carry out many of the functions of that, but it's on a smaller scale. So you'll see shuttle busses that will go through instead of the big traditional busses that people might think about. And, that's a tall order because your distance around things, especially when you drop the White Mountains in the middle of everything, your distance for trips is crazy.
Steve Workman: So folks are are happy when they can connect with basic needs, but then when you talk about the advocacy work and, Ryan, we know how important it is. If you and I show up all the time, we're going to become that old familiar face. We need constituents to come and advocate for themselves and figure out fundamentally, how do we get them there first?
Ryan Donnelly: Absolutely, absolutely. Because, you know, the the more people who are there, the more stories that can be told, will be all the much better for advancing our mission.
Chase Eagleson: Yeah. I always tell people they really don't want to see us legislators. They don't really care to see our faces that much anymore. I've probably been yelled at too many times, and I've yelled at them too many times for them to want to look at me any more.
Chase Eagleson: So it's great to have new faces, great to have new stories. It really just adds to the impact that we all need to see.
Ryan Donnelly: Absolutely. Absolutely.
Chase Eagleson: On that, access and, you know, availability thing, medical transports being a hot bed issue in New Hampshire as of lately, especially in the rural areas where there's really no where to go unless you have an ambulance and ambulances are private providers, and that can be very expensive.
Chase Eagleson: It's been pointed out that, transport through Medicare in particular, is not very well structured to support the needs of the Granite State disability community. What are some ways that you believe we can better this system? Either one of you can...go on Ryan.
Ryan Donnelly: Yeah. I mean, Medicare in particular is such a challenge because, I mean, if you're if you have a medical emergency and you need an ambulance, that's fine.
Ryan Donnelly: That's one thing. But, any kind of other transportation, like non-emergency medical transportation, part A doesn't cover that, part B, maybe, but only if it's deemed medically necessary through a doctor's order. You know, if you're on Medicare, you really need part C or a Medicare advantage plan and have to hope that whatever provider you've signed up with offers that as a service.
Ryan Donnelly: And if not, then then you've got to explore other options, and and that's tough. So. Yeah. Yeah. So I think, services and and resources like Keep New Hampshire moving, are going to be a big help in kind of filling that gap and informing us on where we can do better.
Chase Eagleson: Yeah, it's a especially since we know that I mean, with non, emergency medical transportation, a lot of us need just to get to appointments.
Chase Eagleson: And if you don't get to those appointments, eventually it becomes an emergency. And so you need those appointments. And now you're paying out of pocket for medical transportation, that if you had just gone in the first place for reduced rate whatever, you would've been probably fine.
Steve Workman: Yeah. And I take that as a step further. We're talking about non-emergency medical transportation right now, but we we have bought in as the transportation sector.
Steve Workman: We're educating ourselves. We've started to realize it's not about just operating busses on time. It's really about the consumer. So part of our switch and our addition of mobility management, we adopted a philosophy of mobility management, which is person centered. Now that's going to be a term that's going to resonate through other sectors. In the health care sector they'll use a similar term.
Steve Workman: So if we're serious about person centered, then we have to do better. So, looking at this particular issue. So there's things like social determinants of health. And those are important recognized measures nationally that help us understand how someone is surviving and hopefully thriving. And so just getting to a medical appointment is not good enough. What about, healthy food or what about social activities?
Steve Workman: We have found that isolation, particularly for the elderly, but anyone that feels that in a sense that they're trapped within their home, we know this is a deficit. And so we have to broaden these service deliveries to look at the whole picture. We can't just sort of cherry pick and say, well, if they get to a medical appointment, they're going to be fine.
Steve Workman: Well, that's critically important. But if you wouldn't mind, I'd like to get a little nerdy around this topic.
Chase Eagleson: Go ahead please.
Steve Workman: So, New Hampshire is not alone. I also have had the privilege to work on the national stage with the National Center for Mobility Management. I work as a consultant with Easterseals National, who holds part of that technical assistance center contract funded by the Federal Transit Administration.
Steve Workman: So one of the things that is happening at the federal level and and listeners, please stick with me, because this is important for you to know as you become your own best advocate. So at the federal level, there's something called CCAM, which stands for the Coordinating Council on Access and Mobility. Earlier, Ryan and I spoke about the State Coordinating Council here in New Hampshire.
Steve Workman: That is the state's version of CCAM at the federal level. But what CCAM does is it brings all of the federal agencies that have a piece of transportation service delivery and funding together. And their purpose is to remove policy barriers, to streamline braiding of opportunities for braiding of funding so that you're not, for example, reporting out to seven different, different funders, reporting out to, getting licensed, where one program will say, well, you need these licenses and then another one will add one on top of that, it's a myriad of issues that we don't have time to unpack in this episode, but one of the most relevant things is the issue of Steve Workman: non-emergency medical transportation. And so CMS, which stands for the Centers for Medicare and Medicaid Services at the federal level, they hold the lion's share of transportation funding, and that's specifically through Medicaid. But CMS is represented on CCAM, and there has been a lot of work done between Federal Transit Administration and CMS to actually look at how transportation services are being provided across the country and how they're being funded.
Steve Workman: And so two critical things have happened within a year. Last October, CMS issued a guide to all states that was really doing a deeper dive into delivering transportation services. And it looked at areas, that have been barriers for our transportation providers. I'll give one example. There's something called no load miles. Essentially what this means is you were able to bill and get reimbursed when you had a passenger in the car. Steve Workman: The problem is that you're often dropping a passenger off and then returning back to your facility. And those are unloaded miles well down in the urban areas. That's an issue. But it's less of an issue because the density. But when you're talking about the North Country, in the more rural areas, then that is a significant cost. Well, who is paying for that?
Steve Workman: The transportation agency has to absorb that cost. So this is just one example of how that guide that was issued reminded states to take another look at what is allowed. And this is where you can actually reimburse transportation providers for no load miles. And again, there's several other things that you can drill down in there. But why is this relevant?
Steve Workman: Because here at the state level, we still have that CMS component. So for us it's located within the Department of Health and Human Services. And I know a lot of the folks there. And Ryan, I'm sure you've met with them and spoke with them many times, and we acknowledge that we have to work together better and that there's a need for continual improvement.
Steve Workman: And I think they're starting to do some really interesting things, not just with the Medicaid Medicare, but things that connect to that as well. But what we need them to do is really engage in conversations with us at that macro level. And the thing is, we have the the ability to do that. We have the State Coordinating Council, we have representation from DHHS, which is fantastic.
Steve Workman: But we need to drill into this a little more and have discussions about what is the federal government saying is allowed. What would that look like in New Hampshire? But let's be fair, this is a scary program for people that administrate it, because there's been no end of the discussion of fraud nationally on the political level.
Steve Workman: So you have to understand that when you have state workers or even at the federal level who are trying to manage these programs, and then it goes down to the provider level, there is fear of being audited and found out for some unintentional fraud. What I have found in listening to stories throughout the country and then here in New Hampshire, is that this can sometimes cause paralysis.
Steve Workman: No one wants to actually pop their head up and suggest that maybe we adjust things or try something a little different. I think we have to work with that. I think we have to respect where our state employees are coming from and the circumstances they're working, but we also need them to come to the table to have these harder conversations.
Steve Workman: Because if if you and I stay in silos, you and I are never going to build a relationship. So why should you trust me? You don't know who I am. But if we agree to come together and work through these issues regularly, suddenly we're building trust. And it doesn't sound like I'm just trying to steal some money from this agency to put it over here in this agency.
Steve Workman: No. Again. Person centered. So, for folks that want to nerd out like I do about this, I would recommend that you actually go to the Federal Transit Administration's website. And you can do that by searching for FTA CCAM. So Coordinating Council on Access and Mobility. And that will actually bring you to their information page. And you can find out more about how CCAM is trying to braid efforts across agencies.
Steve Workman: And also you can click through and get some great factsheets because just two weeks ago, FTA and CMS issued a new coordination fact sheet, which I have right here in front of me, which we're unpacking. And here's here's the last thing that makes me proud about my sector. I am finding across the country, it's the transportation providers who are actually picking up the banner and being the ambassadors.
Steve Workman: They're knocking on the doors of their colleagues at state agencies and saying, can we talk about this? And are you aware we have these opportunities and it is totally supported by federal code and state code. We just have to make sure we understand that.
Chase Eagleson: That's an amazing thing hear that, so much work is to, being done to actually push this forward.
Chase Eagleson: I've seen a lot of times when, you know, the job gets done, but, you know, actually getting it out there available sometimes gets a rocky road because state agencies don't want to do it. Some agencies don't want to give up their funding for different things, but it's great to see this actually getting done.
Steve Workman: It is it's you know, I, I understand when the consumer hears these things and says, but I need help right now and I will assure you, my colleagues, at the transportation level, no one likes to say no, we can't accommodate your ride request, but it's the reality of where we're working at.
Steve Workman: But unfortunately, government moves very slowly and it's massive. I mean, it's like a barge. A little course correction can put you miles and miles off course from where you you set out. In this case, we're trying to nudge the system and to actually adapt this. So, I just, my message then is I understand your pain to the extent that I can appreciate it.
Steve Workman: I am not in your shoes, but there is progress out there. And if we support the agencies and the decision makers that are actually trying to create these environments for this to happen, then it allows the system to pick up speed in this change to happen quicker.
Chase Eagleson: That's I, I agree completely with that idea. I mean, on the macro level, small changes can make huge impacts, and we need to keep making those little nudges to the correct side.
Chase Eagleson: But, you know, on the micro level, as you said, you know, people are having issues now, and you know, things like being in the community is a big part of it. You talked earlier about how, transportation can really, for non-medical reasons, can really help you be part of the community, be part of any community you want to be part of, but kind of feel like you belong, which is extremely important.
Chase Eagleson: And now Ryan I want to direct this one to you. You know, GSIL offers a wide variety of services to ensure that individuals living with disabilities are able to access their community. Could you talk about the importance of not only community access, community inclusivity for individuals living with disabilities?
Ryan Donnelly: Absolutely. Because it's it's so important not only for people with disabilities like me, but, everybody really.
Ryan Donnelly: You know, I think, the disability population is a population that oftentimes isn't seen. And, you know, frankly, can be forgotten about. But we're here, we're people. We have hobbies, interests, goals, desires. And, you know, nobody wants to be stuck at home all the time. I want to be able to go out, have fun, you know, catch a movie, grab a bite to eat some place, whatever. Ryan Donnelly: And so I think just, you know, being a part of our communities, being out there and getting everybody used to seeing us and realizing that that we're a part of their communities as well, is is so important. You know, to for things just, you know, like reducing stigma and all that and just raising awareness in general.
Chase Eagleson: I agree completely, Ryan.
Chase Eagleson: I mean, one of the things I've heard, you know, in my years living in New Hampshire a lot of times is why do we need this accessibility thing? There's isn't. I don't see anyone in my community that needs it, but it's because you're not really looking. You can say you don't see anyone, but there's. I mean, one of my favorite sayings is you either have a disability, you're probably going to have one within the next ten years.
Chase Eagleson: I mean, age brings disability. Anything can bring disability. You can be born with it. But eventually someone's going to need help. Someone's going to just a little bit of access. It's not that much to ask for, you know.
Ryan Donnelly: And I can't count the number of times where there's been an accessibility issue in a small town, maybe somewhere. And nothing's ever done about it until somebody speaks up either first that person with the disability or a family member, and the town realizes, oh, well, this is a problem, isn't it?
Chase Eagleson: Yeah. I mean, I will say sometimes it's just not people's fault. They just don't see it from that angle. Ryan Donnelly: No, no. And certainly not to cast blame. It's just it's just how it is.
Chase Eagleson: Yeah. But you know, I, I'm, I will say I mean, again, I've said this about times at this point now, but, you know, I'll say as a kid, didn't see that many people with disabilities.
Chase Eagleson: But again, those because they just didn't have a space, it seemed like I mean, a lot of people seem to be pushed out, which is so weird to me now that I've kind of, you know, grown up and kind of gotten more of an idea about the community. I it was so it's so odd to me. I mean, even in the past years, we've seen huge increases in, community inclusivity and acceptance.
Chase Eagleson: But good thing is, seem to continue to be rolling forward in the best way possible.
Steve Workman: You know, this makes me think of, an adage that I know many of my colleagues, especially within our regional planning commissions, think about, but if we were building our communities, thinking about aging. Right there, you would find communities. You would see things like curb cuts and specialized signals and things that would make it safe is just one example.
Steve Workman: So if we could do more of that, you find because I, I know there are unique needs between somebody that is working with a disability and say, someone who is just aging. But the solution to a lot of those things is the same thing. And it's often good infrastructure, good planning to think about these things. Don't drop a housing complex in the middle of nowhere and without planning for some form of public transportation that would work.
Steve Workman: Don't expect people to make it to a bus stop if there's no safe sidewalk. I mean, those are things. If we just approach those in the day of doing business, we'd find some of this stuff would take care of itself. And then folks that have been challenged and often been stuck at home or, you know, isolated, they know what they can do.
Steve Workman: They have the energy. They can get out and take advantage of that.
Chase Eagleson: Yeah. I mean, I think one of the best examples I've seen of that and curb cuts actually comes to mind is curb cuts aren't only great for people with mobility issues. I mean, parents that have strollers, people with bicycles, I mean, a lot of people can use curb cuts.
Chase Eagleson: And that's just one example on how accessibility issue, sets of accessibility, accommodation really benefit a lot of people in ways that it seems not to be talked about for some reason.
Ryan Donnelly: So there's a term for that, and that's universal design. And that's something that we've been pushing for very hard, especially with our housing crisis that we have in New Hampshire.
Ryan Donnelly: Because, boy, you talk about curb cuts. That's one thing. But trying to find a place to live for somebody who's in a wheelchair in New Hampshire, that's tough, right?
Chase Eagleson: Especially with historical housing modifications. There's allowances with that. I mean, a lot of places, I don't want to say they don't care, but it's just not, you know, on the top of their list of things that they're really looking at.
Chase Eagleson: But really, people want to age in place. It's a great saying. Which is, again, as you said earlier, person centered planning. If you plan for them, to age in place. You're planning for universal design, universal accessibility. It goes on a really nice easy track.
Steve Workman: And it does I mean, we're retrofitting old New England towns. That's challenging from a road perspective because they were all built off of basically horse paths, maybe a cart path if you're lucky, but the point is, we could do this.
Steve Workman: We have really bright people in our state, and we have people at the local level that understand where the needs are. But, you know, there's we've got to take this one step further and we'll just keep working the curb cuts. It's not enough to just design them now. Yes, they have to be maintained. But, we have something coming up called winter.
Steve Workman: And I am very saddened when I hear this, and I hear it frequently. And that is somebody says, gee, there's such a nice job being done to plow the sidewalks, and I can actually get out. And if you're in a motorized chair or you just want safe walking, you're an older adults, you want to be on something. And we hear people being so happy that local municipalities have really looked at that and they've bought the right equipment to do it.
Steve Workman: And then you get to an intersection and suddenly there is a two foot, three foot pile of slush and ice and snow preventing you from going any further. But it's almost like when you were sharing about how you didn't see folks as you were growing up. You didn't realize, I don't think anyone's doing this deliberately. Our plow people, they're not doing this on purpose, but it's a matter of you don't understand the implications.
Steve Workman: So this is where at every level of government advocates need to come forward and to talk about these things, to remind them so that that kind of change can happen.
Chase Eagleson: That's a fantastic point. I also want to applaud our Department of transportation for the plow guys, because I've been to different states and they do not do it as well as we do.
Chase Eagleson: It's might just be a Granite Stater or thing to say.
Steve Workman: We've got skills we can.
Chase Eagleson: It gets done far quicker here, and I but yeah, I mean it's it is the little things that if it was just those thought about or those done again, not their faults, just not something that's on the top of their brain. But if we get it there and there's a lot more people that can get access, a lot more people can be part of a community and it's not like they don't want to be.
Chase Eagleson: It brings up a big point because, I mean, we've been talking about all the stuff we want to do. And a big barrier to that is money. I mean, we're in New Hampshire. Most people want to spend money, which is fair. But funding aside, what is one thing, transportation wise, you would implement to ensure that individuals with disabilities are able to fully access their communities?
Ryan Donnelly: I really think collaboration is going to be the key to figuring that out. And the, the regional boards and stuff that we have here, the work we're doing with the, Statewide Independent Living Council and all that, that's, that's really going to be key to to figuring that out. Funding is definitely an important part of it.
Ryan Donnelly: But, I think really nailing down the resources that we already have that are made available through websites like Keep New Hampshire Moving, I think that's the way to go.
Steve Workman: Yeah. I love when I hear other people point to coordination. That is the only way through. It's better together. Thank you. And so I, I'm not known for brevity. So my one thing is actually like three ish. But I'll be quick about it.
Chase Eagleson: Go for it.
Steve Workman: So the first thing is I mentioned the Keep New Hampshire Moving website was the first iteration. In a perfect world, and I believe we can do this and it's a matter of will.
Steve Workman: And yes, it will cost money, but actually the willpower piece, the desire to come together is we need a system statewide that is one click, one call. Right now when you go on to Keep New Hampshire Moving and you find some providers that you think might work for you, you have to click through to an email or call them, and then you pick that up.
Steve Workman: Now that's for one trip. Now imagine the folks that need to go from the North Country to some sort of specialized center. Think of the folks on dialysis who have to travel. In some cases, we have clinics closing up in the Vermont area and things, and this is putting a strain on the system. So oftentimes, in addition to being in a clinic for just hours a day to to be dialyzed, you now have to to throw hours of transportation.
Steve Workman: Well, our system is not set up that the same mode you get on the same bus, if you will, is going to take you all the way to the North country from the coast or vice versa. So this means we have to switch providers. Well to plan your trip you need. We need technology that can connect all of those providers and they can talk and we can do this.
Steve Workman: There is now a technological standard that would allow these agencies to keep their software that they're using. But there's a standard that can be implemented that allows those to speak to each other from a call center, which now means a consumer could go on and book a full trip. Related to that is a common eligibility application.
Steve Workman: Each agency and this happens for a number of reasons. It was not intentional for people making lives more difficult. But down in region ten, which is on the coast, that region created what was called a Common Core application and it streamlined the process. So for the consumer, you weren't filling out a bunch of different application forms or doing a bunch of different interviews.
Steve Workman: They decided what data really was needed. You complete that data and then it gets shared appropriately. And of course, all of this information is protected just the way you would expect it to be. But this just improves life for the consumer. So I really think that's the next frontier, technology wise, that we should be moving. Next is we have to close the gaps in service.
Steve Workman: We have too many gaps in the state. So this is what's going to unfortunately, as folks try to book rides, I can almost guarantee that one of these times you're going to hear the word, I'm just sorry we can't help you at this time. Or maybe it's a permanent gap. So we've got to do better about that.
Steve Workman: And then finally, this is a shout out to our policymakers. And we have, you know, Governor-elect Ayotte who's coming in. We have turnover in, in the Senate, in the House. These folks have the opportunity to create the environment for this to happen. Now. Yes, they control the purse strings. And I will give a shout out to the bipartisan support.
Steve Workman: We've seen an increase in funding come to support our transportation services through the legislature, and that's a tough decision given the financial picture in our state. So there's already an understanding at that level. But what I'm encouraging them to do is to think bigger and realize you need to create the environment and the mandate for your employees and the state agencies and say, we expect you to reach across sectors, to coordinate and to find those opportunities and then allow people some flexibility to try some innovative things.
Steve Workman: Sometimes things don't work and we can fix those, but without our leaders expressly making that part of it, it's not going to happen just by itself. You will have a few people that rabble rouse really want to try to reach out, but by and large, the system will sort of stay in those separate silos. So those are my three things.
Chase Eagleson: Well, I got to say both those are fantastic ideas. I mean, the technology thing got me a little giddy. That's one of those things in years, people look back and say you had different forms. It's such a waste of time. Right?
Ryan Donnelly: I will tell you, as a person with a disability, I love the idea of having just one common form to fill out for eligibility because, boy, I've signed up for a lot of stuff and \it takes a lot of time and a lot of work.
Steve Workman: Yeah. I mean, if you think about it, why are we doing this? Why do why do our government exists? Why do transportation provide health care? It's all about delivering the services to our residents, to our consumers. So I think that should be a lens that we apply where we look and say, why are we doing this and who is it benefiting ultimately?
Steve Workman: Is it benefiting the bureaucracy and the system? And just perpetuating the way things had always been done? Or is it actually making meaningful change that positively impacts the end user?
Chase Eagleson: What a great statement right there. So I'm actually going to let you keep going okay. So Steve, I love just this end section to allow you with whatever time you want to take, talk about some of the accessible transportation programs that Keep New Hampshire Moving has to offer throughout the state.
Chase Eagleson: Along with that, how can people use those services, provide feedback on accessibility, safety, comfort, etc.?
Steve Workman: Sure. Well, first I'm going to start with our providers because Keep New Hampshire Moving is a clearinghouse. The magic happens with our providers that come to the table and deliver these services and work every day to keep our busses, our volunteer driver programs, going.
Steve Workman: Shout out, by the way, to volunteer drivers. Without them filling the gaps, we would be completely dead in the water. So if you're hearing this and you know folks that might be interested in becoming a volunteer driver program, go to Keep New Hampshire Moving. Reach out to us. We will connect you with a program in your region.
Steve Workman: The more drivers we have, the more effective program that will be. So that's my tangent on volunteer driver programs. But in terms of other providers, I work with fantastic folks. Like I said, they don't like the no word being able to say. We just can't accommodate a ride. Now, that may not always be in the harried process of booking rides.
Steve Workman: You may not feel that warm and fuzzy coming back at you from the line, but I can assure you, when I work with the leadership from these agencies that this really bothers them. So within that, though, if you go through our provider list and I'm going to highlight just a couple of big ones, but there is accommodation.
Steve Workman: So anyone that is receiving public funding and this would be both federal pass through dollars and then any state dollars that may go into the mix. There are requirements to make sure we're maintaining accessibility and providing for the other needs of a myriad of potential riders. And so they're doing that. Others. We have Easter seals, for example. They're working out.
Steve Workman: They have a lot of facilities. Granite State Independent Living, Ryan, of course, runs a fleet and is critical they're accessible vehicles. Ryan Donnelly: Absolutely.
Steve Workman: So they exist when you go on to Keep New Hampshire Moving. If you are doing that provider search. We did one thing because we knew that wheelchair accessibility was really a critical piece. So when you get this little return on your searches, it comes up each provider's in a little box and there's a bubble that comes up that will say wheelchair accessible.
Steve Workman: So that's just one small way that we tried to to cut to the chase for folks that are looking for accessible vehicles, so this is great. One of the issues, though, is not all providers out there. So we know we live in a day of Uber and Lyft and taxis, and these are part of the solution.
Steve Workman: However, a consumer needs to know who they're getting a ride from. They have to understand do they have accessibility? Do they understand the needs? I have heard horror stories that have broken my heart, where somebody who is is working through some sort of a disability. One of the biggest stories involves somebody who was in a chair, and basic dignity of that individual was not preserved.
Steve Workman: That's unacceptable. We can do better than that. So we need to make sure that while we're looking to close these gaps, that we're actually finding providers that truly understand what they are providing, because this is not I want to go out to dinner and I need to ride home after a night of clubbing, you know, at the bars or something like that.
Steve Workman: They need to understand that if you're providing these type of rides, it's a whole different world and you need to step up to that challenge. So that's the difference. I'm a big proponent of our publicly and charitably funded providers, and we have a bunch of for profit providers. For profit is not bad. What you want to make sure is that they fully understand and they've been vetted and they're trained and they understand the issues and are held accountable.
Steve Workman: Another thing is, a project that is specifically under Transport New Hampshire, and you can see nods to this on the Keep New Hampshire Moving website. At the bottom of every page on the website, there is something about I forget what it says. It's something about your user voice, you know? Click here and sign up. So Transport New Hampshire because of our advocacy role, is creating a consumer voice pipeline.
Steve Workman: And so I'm hoping that this will move. We have the infrastructure in place. My website, which is not live right now, has actually been restructured and is waiting as we're building out the rest of this. But essentially right now users can click on that and they can sign up. We're trying to create a two way dialog so that we better understand what are the issues out there.
Steve Workman: Now, I want to caution two things to anyone hearing this. This would not be an emergency hotline. This would simply be a way to to bring consumers together and elevate their voice and also share information with them that might be relevant. The second piece is that, if somebody believes that their civil rights have been violated in any sort of way or a situation they had with a ride experience was just really critical, that goes directly back to the provider.
Steve Workman: And I will tell you that all of our publicly supported providers, they are responsible for this. And if you go on to their websites, it will talk about if you need to file some sort of a report and contact them. So yes, you can talk about experience generally through this Transport New Hampshire consumer voice pipeline, but it will not replace the need to interface directly with an agency.
Steve Workman: And certainly, like I said, it's not something set up to be responsive to. I need a ride or I've been left somewhere. So I think I think this is going to help. And we've covered a lot of ground and if we can move those pieces forward, continually improve the website, move toward more of a one click, one call situation, a common application.
Steve Workman: And if we can keep communication and coordination lines open, adding that consumer voice is only going to help. And the other thing, while we've been building these relationships across sectors, when I talked about getting information back, I really do see this consumer voice as a two way pipeline. So I expect there may be opportunities with my partners at DHHS, for example, in public health, there could be relevant information that we are trying to get out in front of the community really quickly.
Steve Workman: And so we're creating this system that. So again, right now consumers can go on the site, go to the bottom of one of the pages, click that link and you can put your information in. And I will assure you that nothing will happen for a while, but as soon as possible, in the coming year, I'm hoping to have that up and going where we start making communications, and we start really trying to figure out what that consumer voice piece is going to look like as it matures.
Chase Eagleson: I can say I've checked out. You keep doing what I said earlier. Ryan said he's checked out. I know a lot of people have checked out. I have only heard positive things which for New Hampshire is seemingly impossible. But I mean, again, I agree, and I, I'm going to reassure you, this is going to make a good impact because I've already seen it make a good impact, just even emotionally on people.
Chase Eagleson: The idea that it's out there and, you know, someone's trying and it's actually trying. Well, it's been great to see. And I again, I applaud you.
Steve Workman: Well, I appreciate that. On behalf of our entire team, our mobility management team, our Coordinating Councils both the state and regional. We worked hard. This was this was really at this point, this was a five year planning process that was not pleasant, just simply because it took time.
Steve Workman: But we had to work through a lot of issues, and we've got more issues to go and then sustainability. But I really appreciate being able to bring that type of feedback to say, you know, people are noticing our efforts. Let's build on that. Chase Eagleson: Oh, they're noticing. And I will say it's again, surprisingly all positive, which is amazing. Excellent.
Chase Eagleson: Well, Steve, Ryan, thank you both for being here. I'm sure this information can be extremely helpful for people, and it's always great to see both of you. This has been That's Inclusive podcast. My name is Chase Eagleson with Steve Workman and Ryan Donnelly. Thank you.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 24: NH Vocational Rehabilitation with Director Richard Sala
In this episode Isadora talks with the newest New Hampshire Vocational Rehabilitation Director, Richard Sala, about the services NHVR provides, his vision to improve services, and how to advocate for your child’s transitional support needs.
Learn More:
New Hampshire Vocational Rehabilitation Services
New Hampshire Family Voices
Maneuvering the Maze
Episode 24: NH Vocational Rehabilitation with Director Richard Sala
Episode 24: NH Vocational Rehabilitation with Director Richard Sala
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities.What does that look like? And how can we work together to make our world a more inclusive place?
Speaker 1
Hi everybody. You're here today with Isidora Rodriguez Legendre. I serve as the executive director at the New Hampshire Council on Developmental Disabilities, and this is our podcast that's inclusive. Here with me today is Richard Sala, who's the director of the Bureau of Vocational Rehabilitation here in New Hampshire. Hi, Richard.
Speaker 2
Hi. Good to be here.
Speaker 1
Yeah. Thanks for coming today.
Speaker 2
It's my pleasure. Thank you.
Speaker 1
So, I thought this would be a great opportunity to kind of introduce you as the new-ish director now. And for how long? How long have you been in your role?
Speaker 2
Just about ten months. I started January 12th.
Speaker 1
Okay, great. So, yeah, you've had a good chance to kind of take a look around,
see what's going on, make some, informed decisions for vocational rehabilitation.
Speaker 2
So, absolutely.
Speaker 1
I thought it would be a great opportunity for people to kind of get to know you, who you are, where you came from, what your vision is for vocal rehab going forward. So why don't you tell us a little bit about yourself?
Speaker 2
Yeah. So, I grew up in Queens, New York. I moved when I was in high school to Colorado Springs, Colorado. After high school, I wasn't sure, you know, what I was going to do with myself. So, I ended up joining the Marine Corps. I enlisted in the Marine Corps in, June 10th, 1997.
I thought it would be a four-year kind of get my life in order and get out. But it didn't end up being that I ended up serving 21 years. I did my first ten. As an enlisted marine, and then my last ten as an officer. My last 11 as an officer. I retired in August of 2018.
We moved to New Hampshire. My first job after I got out of the Marine Corps was as counsel to the commissioner of the Department of Education here in New Hampshire. It's a great job. From there, I went to, I joined the faculty at Vermont Law and graduate school, and taught constitutional law and national security law, which kind of was on my bucket list.
And, enjoyed that. I did that for about five years. Kind of in that period, I served on the state Board of Education. And then, joined as the director, of vocational rehabilitation in January. My family, I have a family. I've been married for. I'm going to get this wrong 22 years. And, I have, a 16-year-old daughter and a nine-year-old son.
Speaker 1
Cool. Well, first of all, thank you for your service.
Speaker 2
My pleasure.
Speaker 1
And I, I love that you're also an attorney. That's pretty cool. That's like, you know, for a military service to kind of, really looking at the legal aspect of things, it's a lot. It's kind of like a different way to look at, our justice system in some ways. Right?
Speaker 2
It really is. And I was very fortunate during my time in the Marine Corps, I, I really value education. So, every opportunity that that I had, I tried to improve, you know, myself through education and, in 2010, I was selected for the JAG program. So, I've been an infantry officer before that and then became a JAG.
And then did that until I retired.
Speaker 1
So that's so cool. So, tell us how you kind of, did you just land in the Department of Education? How did you get, interested in vocational rehabilitation or Department of Education in particular?
Speaker 2
It's a great question. I actually love to answer this question. So, first thing, when I was very young, I was in a boys home in upstate New York, and I had a great mentor, a teacher. Her name was Marlene Leventhal. And she was a great human being. And really impressed upon me the importance of education.
And I carry that kind of throughout my career. But when I was getting ready to retire, it was an area that I really wanted to focus in on. I mean, I had, grown up in New York City. We were very poor, and kind of going through my educational journey, I just realized what a great tool it is for social mobility and those kinds of things.
And so, I saw that there was a job opening at, at, at the Department of Education. We knew we wanted to live in New England and settled in on New Hampshire. And I applied and got that job. And so that opened a lot of doors.
A lot of, learned a lot of things. Participated, you know, in different communities that I hadn't really participated in before.
And one of the real takeaways for me, actually, was, the, you know, the special education community, and really working with parents who were advocating for their children. And it's difficult and I and that was kind of the takeaway. It's hard. Yeah. If you don't have a lawyer, if you haven't, you know, read, statutes.
So that kind of, stuck with me and then, when I went to the law school for a while, and, and I, and I was, my kids were getting older, essentially, and I was working a lot of hours, and I especially my daughter, I love my daughter. And I just wanted more time with her.
And so, I was looking for something that wasn't, you know, 75, 80 hours or, and so, I was on the state board of Education and I heard through that, that the, that the director's position was open, and I thought, what a great opportunity. Like really uplifting work. Working with really cool people, on a really cool mission.
And I thought, this is this is going to be great.
Speaker 1
Yeah. You're 100% right when you say it's really difficult for families, especially new families entering the system with, you know, and a diagnosis and not kind of knowing where to turn. You know, the parent Information Center puts out a resource guide called Maneuvering the Maze. And that's because that's how difficult it can be trying to figure out kind of supports and services for students with IEPs and 500 and fours.
And, you know, where do you get, your, your OT and your or your, speech language therapy? There's so many kinds of different ways to come in the system. And then depending on your age, that looks different, right? The 0 to 3 looks different than school age. And then you go all the way up through transition, which we'll talk a little bit about through, the services that VR provides for transitioning students and what that age is.
But it can be really difficult for families. So, what would you tell a family kind
of coming in who recognizing, right, that it is difficult and, like what maybe have you learned about what resources are available or what the sense of community is in the disability world?
Speaker 2
It's a good question. I think I think the, the most basic advice that I, that I would give is, you know, first of all, don't stop advocating for you for your child. It's hard it's hard to advocate. You're always questioning, am I doing too much? You know, I have a child with an IEP.
And I ask myself that question. And I think I probably have a better understanding than a lot of people about, you know, navigating that maze. And when I go into the meetings, you know, my am I being overbearing in my too forceful? You know, are they going to resent me?
Speaker 1
Yeah. The answer is no. Yeah. Right. Never too much.
Speaker 2
That's right. And I think the second thing is, get involved as early as you can with entities like vocational rehabilitation, you know, and the Developmental Disability Council. Like, get out there and find out who are who your friends are and who can help you navigate that community, and then stay in touch. And then and then just get your hands on the resources.
And don't be afraid to ask. And, and I just would say, you know, we just added another, position. The state just added the advocate for, I think it's going to get this wrong, but advocate for special education. Get in there, let them know who you are. And, and get the tools that are at their disposal so you can put them to good use.
Speaker 1
Yeah. Another organization that we work closely with is New Hampshire Family Voices, and I really love referring families to that organization because it's really a peer to peer, place. So, there are a lot of parents and guardians with lived experience of supporting students with disabilities throughout their
lives. Right? Some with younger children, some with older children and, or adult children.
And they really have that kind of on the ground knowledge of how to navigate different situations or different roadblocks, if you will, that you might encounter in the system. And can you who the Co two people are because, you know, half of half of our system in many systems is who you have to know who to go to to ask the right question.
Right? Or you have to freeze the question in the right way to get the answer that you're looking for.
Speaker 2
Absolutely. And maybe one last little thing, maybe that I would add, is do it in person when you can. Yeah. You know, email is such a great tool. And, you know, we use it to be efficient in all kinds of ways, but people's inboxes fill up. You know, they kind of you kind of start you starting at the top of your inbox every day.
Maybe you're not getting in. You know, getting to the person who emailed you yesterday until the end of the day. So, I would say, like, reach out to people, talk to humans, like on the phone. Yeah. And try to schedule that FaceTime and get in and get your questions answered.
Speaker 1
Yeah. I mean, I would say as a recovering New Yorker myself that, yeah, that I was pleasantly surprised when I moved to New Hampshire and I found how accessible people were always willing to pick up the phone, always willing to meet for coffee, and do like that face to face. It really makes such a difference when you're advocating for your family member, or even when you're just making connections and building relationships that can help you in the future.
Email is not going to do that.
Speaker 2
Absolutely. And I probably would have mentioned this later, but I'll mention it now. So, it's something I try to do with the Bureau. I want to talk to people.
And so, you know, if I get an email or, you know, someone leaves a voicemail, I want to get back to them and I would say probably more than half the time I try to schedule an in-person meeting and even, you know, I'll use zoom, or I'll use, you know, Microsoft Teams and try to put a face to a name.
But when I can, I prefer in person. Yeah.
Speaker 1
That's cool. So yeah. So, let's talk a little bit about, your role, vocational rehabilitation and kind of what your vision is or your hope for the future of voc rehab here in New Hampshire. Yeah.
Speaker 2
That's good. So, I'll, I'll talk about it, like short term and long term. You know, so short term, I just want to be efficient. I want to, help more people. I want to help them quicker. It's easy to say, but hard to do. And so, we've been spending a lot of time on efficiency.
Where can we cut out red tape? Where can we empower people to do things on their own, they may not necessarily need us to do. And so, you know what we want to see is, a faster turnaround for people to know that they're eligible for VR services, a faster turnaround when we're creating their individual plan for employment.
And really get and then and, you know, shrinking the time from the time they walk in the door to the time that they're walking in the door to their first job. Yeah. You know, we help, people over some people for a short span of time, some people for a long span of time, I think.
But the goal really is you don't need us anymore. That's a pat on our back. You know, when you're like, thanks, guys. You know, appreciate the help. I'm gone now. And so in the short term, we want to really focus on efficiency, helping as many people as we can as fast as we can. But in the long term, what I like to tell people is I want to be the LinkedIn of, you know, New Hampshire for people, experience and disabilities.
I, the two most important, relationships that we have at VR. One is with our participants, you know, people come in the door asking for help, but the
second one is businesses. And that's somewhere where we really got to develop that more. I would love to have more businesses coming to us and saying, we have these jobs and we're looking for, you know, people, to fill these jobs.
Do you have someone available?
Speaker 1
Yeah. So that's one of the things at the DD Council, though, we would love to see. Also, you know, there are a lot of folks, who are in our community, and they want to work and they have, you know, some limitations with how many hours they can work or what kind of jobs they can do, but they're very eager and, you know, would make great employees.
Right? And so it really is a matter of building the capacity for those individuals to get, and employment. And then also to fill the need of some of these companies and businesses that are having a harder time recruiting and retaining, staff. Today, in today's kind of job market is a little more sketchy than it used to be.
Speaker 2
Yeah, absolutely. And I think if you're tied in with the business community in the right way, you can kind of overcome some of those ebbs and flows in the job market, you know, just by having good relationships and, making sure that where you know, putting, you know, quality candidates, you know, into the business, into the business and the work pipeline.
I think part of that is just really spending time talking to people about what they want to do right after you find the job that thereafter. Right. They're a lot more likely to be successful in it.
Speaker 1
Yeah, absolutely. It's about matching that individual to the right job and vice versa. Right. Finding those jobs that really are best suited for some of the folks that have disabilities. But that willingness, right, that drive to work. And, you know, the other thing I would kind of ask is, how do you think that can happen? So, when we look at our five year plan and we talk about kind of
creating more jobs for opportunities for competitive, integrated employment for individuals with intellectual and developmental disabilities in New Hampshire.
Like, do you have a sense of kind of what a road map might look like for building those business partnerships and relationships, or are you kind of starting from scratch?
Speaker 2
I don't think we're starting from scratch. We have a business engagement unit. We have great people over there. Tracy from I tell her to desk, I think some of it's just about giving direction, you know? Where are we going? You got to have you have to have, like, an end state, you know, mission.
Yeah. And I think the first part of that is, we have something great in place, which is the Employment Leadership Awards, where we recognize businesses who are who are doing a great job in this space. I think the second thing is we have to be more visible. You know, we were talking at a recent meeting about, you know, we just we're just getting done with, national disability. I'm gonna mess this up. The National Disability, work awareness month, and I'm like, I would love to have job fairs throughout this month, like, specifically for people experiencing disabilities, you know, and really advertise on big ones. You know, maybe, you know, we go down to the ice arena and fill it up with, with employers right there in Concord, you know.
So those are things on our radar. I think the other thing is, finding leaders in the space and, and then using them to set the example for everybody else. And so, some of the things, again, they're ideas now. But I think over time we can do it right. But is really recognizing, people or businesses that are already partnering with VR.
Right. So, like one idea would be, that they have a badge on their website. We partner we partner with VR, right? And maybe after so many years of, you know, that partnership, that badge goes from, you know, bronze to silver and silver to gold, right? But I think it doesn't. And it's not only to say something good about the business, but if you're looking for work and you get on that website and you see that badge, you're like, oh, I'm welcome here.
Yeah. So those are the kinds of things, the kind of direction I would like to take it in.
Speaker 1
Yeah. And even for kind of those business to business, mentorships and connections that we think about at the council, like seeing a badge on someone's website might encourage a business to reach out and kind of ask about what that partnership has looked like and what have been kind of some of the successes and challenges so that they could think about doing it themselves.
One of the things they wanted to, you know, thank you for is having a presence at the, DEI from talk to action event that we, sponsored with, New Hampshire Business Review really reaching out to a network of employers who may not have heard of kind of this untapped pool of human resources, that is the disability community.
And, and really having, a presentation that helps dispel some of the kind of assumptions that people have made and also really provides information about resources and tools and supports that are available to businesses who want to hire people with disabilities or who are willing to try it out on a small scale and see how it goes.
Speaker 2
Absolutely. I mean, you know, I think a big part of the business engagement unit's job is myth busting. Yeah. And then, you know, when we're successful, we get to share that story. Yeah. I think the other thing I, I love to do is when we're already working, you know, with a partner, you know, for example, we have a great internship program with CVS that gives me the opportunity to go out to other, you know, pharmacies and say, why aren't you doing something like this?
Did you want to be a part of this or, you know, you go to an event? I was an event recently. I won't tell you who, but there was there was a branch of service there, you know, one of the branches of service was attending the event. And I said to them I was like, thanks for being here, and I'm going to go to all the other branches and say, how come you didn't have somebody here?
Right? So, so, you know, looking for the opportunities. And I think the last thing that's really important that you, your kind of alluded to is you got to be you got to be visible in the community. You got to get out of the office. And I, I try to really spend time outside of the office or even when I have to take a meeting.
You know, I tell people all the time, you don't have to come to me. I'll come to you. I want to see where you work. I want to, you know, be out there.
Speaker 1
So, yeah. So, so part of what VR does is, is work with transition age youth. So can you talk a little bit about, you know what the Spanish for that what those supports and services look like and how people can kind of get connected.
Speaker 2
Okay. So, I'm not going to talk about age right now because I can't remember off the top of my head. I apologize. Big bureau a lot of numbers floating around up there. But, so, our administrative joy, partners with lots of different, programs out there to, to work on, you know, the periods, the pre-employment, transition services, for the young people, we're always trying to grow.
You know what? We're trying to grow those programs. I think the biggest thing we have to do in that space to improve what we're doing is, being the schools. Yeah, we've got to get to more schools, and create good partnerships like, so that the school knows, oh, we can have VR come and do this presentation. We've been doing these level up events, you know, where we're bringing high school students into either look at what their opportunities are in college.
Maybe that's for them. But other ones are just job fairs. You know, we had a great, job fair, and I, I was so, so surprised at how large it was. I just didn't realize it was my first one. And so many vendors there. I mean, so many employers there. Everything from, like, USPS and the ship, you know, the shipyard, to, there was a salsa company there.
Can't forget the name of it off the top. I think it's mix. And hopefully I get it wrong. But just so many different people there, looking, you know, realizing
that we have a great, you know, we have a great pool of candidates for employment and they can take advantage of that. So, getting young people to do that, and I and I think that I think the key to it is partnering with schools and schools, knowing that we're a good partner.
Speaker 1
Yeah, I would agree with that. I think, a lot of families, you know, our are thinking about employment for their youth and young adults, a lot earlier these days and, and right around 14, they're told that like, they should start working towards some kind of thinking about transition and transition services and what will that look like?
And, you know, I won't get into kind of the Department of Education overall, which I still think kind of silos individuals with disabilities and to certain tracks that may not, expose them to all of the available opportunities, beyond high school. But that's my personal opinion. And I, I just think that, again, awareness and recognizing kind of what's out there has been a challenge for so many, people with disabilities and a lot of the folks that have had difficulty finding jobs in the community or finding supports through vocational rehabilitation have had some success kind of going on their own, finding, jobs, either through, you know, their, their own social capital,
right? Their, their parents or, or community members might have know about someone who's hiring and might be willing to give them an opportunity or a chance to work a few hours a week. As a young person, a lot of young people do, right? And you get jobs like an ice cream or, you know, delivering newspapers. And so, I, I want to recognize that, it's important to look outside of kind of traditional employment spaces.
Absolutely. And one of the ways that we've seen, younger people think about that is through kind of entrepreneur partnership and supporting people kind of starting their own finding their passion and, and figuring out what kind of work they could do.
Speaker 2
Yeah, absolutely. You know, when one example, you know, we do a lot of work with GSL. So, where we have the Earn and Learn program, we have the impact
program. I love to make it to their graduations. I think I, I wouldn't have made it to all of them. I think sometimes the commissioner goes, and, you know, he wants to talk to students too, and sometimes the deputy.
But I go to a lot of them and, and one thing I always talk to them about is, you know, number one, start making a just have a plan. Yeah. And, and the second thing is your, your first destination doesn't have to be your final destination, right. Like, start just inching your way towards what you want to do.
And you know, sometimes by doing that, you find out what you don't want to do. And that's as valuable as knowing exactly what you want to do. So, you know, I definitely. And one other thing is, and the longer I do this, the more I feel this way. It's not unique, to people experiencing disabilities that you can't, you know, you're not getting the full picture of work, you know, not everybody has to go to college.
I have this conversation with my own kids. You know, you know, my son will say to me, do I have to go to college? No, you don't have to go to college to be successful. There's other ways to be successful. You could be an electrician and be successful. You can be a carpenter and be successful.
You know, what you want to do is find, work that doesn't feel like work so that, you know, you enjoy yourself.
Speaker 1
So. Right. Right, right. I mean, I think you're absolutely right. It's a kind of a life experience that, like, thank goodness we don't end up staying in the same job that we first got. Yeah, that's the first job. Yeah. That's right. They're usually not, the ones we want to build a career out of.
Speaker 2
And I think I think you mentioned entrepreneurship. And so, I'll just briefly say, you know, we do help people who want to have we want to go on that self-employment track. I would encourage it just so everybody knows, you know, we if you go to the vocational rehabilitation website, we have our policy handbooks right there for people to see.
Yeah. And you can open it up, it's PDF and you can, you know, search, self-employment and just kind of read through like what do they look for in self-employment. But we do help people with self-employment. We try to help people, you know, develop business plans and those kinds of things. We put some things in place to try to make sure that we get off to a good start.
But, you know, we love entrepreneurship in the United States. So, you know, it's part of our, you know, it's part of our package. We get somebody in the.
Speaker 1
American dream, right?
Speaker 2
That's right. Yeah, yeah.
Speaker 1
So yeah, I want to start to kind of wind down a little bit, but I want to give you an opportunity to kind of talk about what you feel have been some of your accomplishment and accomplishments so far. And, you know, what have been some of the challenges that you faced in implementing just, you know, doing things differently or improving services?
Speaker 2
I'll start, I'm trying to think about challenges. It's good. I mean, there have been plenty, you know, first of all, it's a large bureau. Yeah. So, like, getting your hands around everything and meeting all the different communities, you know, working.
Speaker 1
With a lot of offices.
Speaker 2
Yeah, absolutely. So, we have regional offices all around the state. You know, if I miss one, someone's going to get mad at me, right? But. Berlin. Portsmouth. Keene. Concord. Manchester. Nashua. And so, and then and then the and then different communities, you know, the blind and visually
impaired, the deaf or hard of hearing.
And, and I really have spent the last ten months trying to meet people in every community. And, and so, I don't want to be too hard on the bureau, but, you know, some people, that I've talked to along the way, they kind of had stopped engaging, you know, they felt like maybe they had maxed out there, their expectations of the bureau and so I've been going around and telling people like, you know, try again, like, let's see what else we can do.
I bet we could do more. And so just kind of breaking through that ceiling, can be a little, a little challenging, but I I'll, I'll say that the vibe feels great. You know, I've been meeting with so many people. I feel like people think, you know, you know, change in leadership, new opportunity to try things.
Maybe. Maybe you had something you wanted to work on in the past, and it got kind of overlooked. And this is an opportunity to come back and say it again. One example of that, and I'll use this as one of the successes that I think we've had in the last ten months. When I got here, the bureau had been trying to buy a high tech, van.
Oh, yeah. For to help train people, to drive, and they kind of had hit several obstacles. I got here and the commissioners, like, you know, find a way to get this van. And it was hard. There's, you know, some bureaucracy. You have to wade through some red tape for sure. But we purchased that van last month, and, you know, that's phase one.
And now we're. Now we just have to find, like, who's going to use it to train people. So that that to me was a huge win, you know, and when I go around and talk to people who are looking for mobility solutions, they're stoked.
Speaker 1
Yeah. No, that's great. That's a great example of, you know, kind of the optimism that I have certainly in, in, newer, fresher kind of VR in New Hampshire. And I think a lot of that has been you really taking the time to listen to people and kind of hear what their experiences have been with, like no judgment, and then just kind of chipping away at a plan to really improve those experiences.
I think, you know, I, I definitely have seen some improvement. I'm, I'm hopeful to see a lot more in the future. And one of the ways we would love to support VR in kind of moving forward and moving towards having more successful outcomes. Is there any way or anything that you can think of that we can support VR in that way, to be able to do that?
Speaker 2
Oh, I think the biggest thing I would say, you know, is just partnering you know, I just think, it's so important. And I've said this several times, but it's important to be in the community, be with people. Like if you have an event and you want us to be there, you want us to table, you want to come talk to people you know, you mentioned the conference earlier.
I want us to be there. I want us to be out in the community. And that means saying yes. Sometimes it means, you know, walking away from your desk and letting the kind of administrative, and paperwork wait, so that you can go out there and be with people. And I think the other thing is, you know, be a part of be a part of the feedback loop.
I want to hear I want to hear good news, but I want to hear bad news. You can't fix things you don't know are broken. And so, I think and because you're so, you know, integrity in the community, you're going to hear those things too. You know, we're not we’ll hear it from some people, but some people just walk away when they're frustrated.
You know, they'll just go try to try something else. But yeah, I would say you know, find ways to partner with us, let us know when we come out. And, and vice versa. You know, we could also let you know when we're having an event, and you can be there. But I think the biggest thing is being a part of that feedback loop, letting us know where we're you're doing this good, sustain that or you're not doing this well.
You need to improve on this. And I you know, I have thick skin. I'm good. I'm good with that.
Speaker 1
That's great. Yeah. No, I we're not shy about letting people know. I know, I
know what some experiences have been, but really kind of from a place of, of wanting to improve the quality of services and the quality of outcomes for people with lived experience of disability in New Hampshire. And, and I, you know, I, I get the sense you have that same vision and, and mission.
And so I really appreciate your, you know, this opportunity to talk about partnerships and to talk about, you know, if you if you had a bad experience, try again. Right. That's like kind of that riding the bicycle analogy. Let's fall down like let's get back up and try again.
Speaker 2
Yeah right. Fall seven times. Get up get up a. Oh.
Speaker 1
All right. Well, I want to thank you again for being on our show. That's inclusive. And we will share your contact information and resources about VR on the show notes. And, please let us know how we can partner in the future.
Speaker 2
Awesome. Thanks so much for having me. And hopefully I'll be back again.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV.
We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 23: Electoral Work and Mental Health
In this episode, Blake talks with Doug Marino about his experience of needing to take care of his mental health while being engaged in electoral campaigning.
Learn More:
New Hampshire Rapid Response Access Point – free and available 24/7/365
1 (833) 710-6477
Episode 23: Electoral Work and Mental Health
Episode 23: Electoral Work and Mental Health
Transcript of video:
Speaker 1: Doug Marino
Speaker 2: Blake Tyler
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability
and what it means to live a full life, engaging in our communities.
What does that look like? And how can we work together to make our world a
more inclusive place?
Speaker 2
Hey, everybody. How's it going today? This is Blake Tyler. I am the social media
assistant for the New Hampshire Council on Developmental Disabilities. And we
are here recording our next episode for That’s Inclusive! which is our awesome
podcast that you can get on Spotify, through our website and a whole host of
other places. And, you know, the topic of today's meeting and session are May,
which is Mental Health Awareness Month.
Speaker 2
As everyone probably knows, which is a topic that is really near and dear to me, as
someone who has anxiety and depression and a whole host of other things going
on at the same time. You know, welcome to being a young person in today's
world. And I'm joined by a very special guest and dear friend, Doug Marino.
Speaker 2
Do you want to go and introduce yourself?
Speaker 1
Yeah, absolutely. Thanks so much for having me, Blake. My name is Doug Marino.
My pronouns
are he, him and his. I work as a political consultant here in New Hampshire. I have
worked for different New Hampshire Democrats over the years. And I live in
Brentwood, New Hampshire, and I'm a
member of the Brentwood Planning Board that was elected last March.
Speaker 1
And just a quick disclaimer. The views I express here are not in any way shape or
form, reflect the views of the planning board. I'm speaking in my own capacity.
But, but, yeah, I came to New
Hampshire. I was eight years old and just fell in love with the state and have
stayed here ever since.
Speaker 1
And I'm working to get my master's degree in public policy school at UNH.
Speaker 2
Thanks so much, Doug. And I should also throw out my pronouns are also he, his
and him. My views are my views, and they may or may not reflect the opinion of
the council, depending on what we say by the end of this recording, I suppose.
But, you know, very lucky to have Doug on. I've known Doug for a number of
years, through my political work in the past.
Speaker 2
And I tell people, Doug is one of my favorite people in New Hampshire politics,
which is a big badge of honor. If you know me here though, Doug, they, I did not
know that you weren't originally from New Hampshire. Where are you from? Like,
where were you born and raised the
first seven years or whatever?
Speaker 1
Yeah. So I came here when I was eight. When my father's job was relocated. I was
born on Long Island, in New York. I was born in Massapequa, which is a town on
Long Island. So, yeah, I came up here when I was eight, but, still love Long Island.
Speaker 1
Have a lot of family there. And love to go back to visit. But I definitely fell in love
with New Hampshire when we came up here.
Speaker 2
That explains the Jets fandom. Now, you know it does explain.
Speaker 1
Yeah. I was born.
Speaker 2
You were this inexplicable Jets fan for the longest time to me. And I was like, he
knows where he lives, right?
Speaker 1
Yeah, right.
Speaker 2
This is Patriots Nation and we don't we don't do the Jets here. And now that
definitely explains things. So you're a masochist by nature.
Speaker 1
Yes. I was born into it. Yeah.
Speaker 2
So what brought you to the Carsey school? And, you know, just tell me a little bit
about that.
Like your journey, to get there and any kind of exciting projects you may be
working on? At the school.
Speaker 1
Yeah. So, you know, I graduated from, my undergrad, and I did political science,
and that was back in 2018 when I graduated and really just kind of went right into
the campaign world, and, you know, was doing kind of like campaign after
campaign, which, was, I had a lot of great experiences, met so many amazing
people and, you know, got to help.
Speaker 1
Some really good people get elected. But, it got to a point where it really took a
toll on my mental health, particularly, and, you know, 2022, 2023, when what was
hard about it is, so I'll tell you, Senator Hassan campaign as an example. I worked
on her reelection race in 2022, and the campaign leadership ran the most
sustainable campaign I've ever been a part of.
Speaker 1
They made sure we had days off. We had, you know, of course, we had health
insurance, you know, which, we had access to, to mental health care and, you
know, they gave us a lot of time off. And so they were so good about giving us the
tools to take care of ourselves. The problem
is, I didn't utilize those tools, and I put a lot of pressure on myself that wasn't
healthy.
Speaker 1
And so I think that that's something that was a learning experience for me is that,
you know, sometimes you're in a workplace where you have really great bosses
and they give you the tools to take care of yourself. But I just wasn't accepting
those tools, and I wasn't taking care of
myself. And so after the 2022 election, going into 2023, I, you know, I kept going in
the campaign world, and I just kind of hit a wall where my depression symptoms
hit like an all time low.
Speaker 1
Or like I hit it a whole time. Well, my depression symptoms hit the whole time. I
hit an all time low. I was, like, waking up every morning. Just kind of like dreading
the day, you know? And just kind of wanting to stay in bed and, I would, you know,
I would start crying. I didn't really totally know what I was upset about, which is a
really confusing feeling.
Speaker 1
And so I realized that I had to make serious changes in my life. Because so much of
this was a product of me just not taking care of myself and taking care of my
mental health, even when I had opportunities to do so. Like I said on Senator
Hassan’s campaign, they took such good care of us, but I just wasn't taking care of
myself.
Speaker 1
And so got to the point. In 2023, when I realized that I had to make some changes
in my life and I needed to start doing things that I had been putting off for a long
time, things that would bring me happiness and fulfillment. And so one of those
things was running for office because I've always wanted to serve.
Speaker 1
My dream is to, you know, be a public servant and to help people. And, so being
able to do that, and getting elected was, was, really huge. But also going back to
school and getting my master's in public policy. It's something that I always kind of
wanted to do, but there was always another campaign right around the corner.
Speaker 2
So that was in New Hampshire.
Speaker 1
Especially in New Hampshire with the team, everybody's up every two years
except for our senators. Our U.S. senators. So there was always another campaign
around the corner. And so I always kind of made an excuse like, oh, I'll get to it
eventually. And then I kind of got to the point where I was like, I need to do this
now because I think it's going to bring me some happiness, some fulfillment.
Speaker 1
And so, I made several changes in my life. I applied to the Carsey school and, and,
went and started going to the school. Took a step back from politics for a little
while, start doing some work. At the Institute on Disability at UNH, and also had a
side job working at Strawberry Banke Museum, which is really cool, kind of getting
to, you know, work with kids who are interested in
history and stuff like that.
Speaker 2
Yeah.
Speaker 1
And then gradually I've gotten back into politics in a way that's healthy for me.
And, and. Yeah. And, I've been really enjoying the Carsey School and finished up
my first year. I've got one year to go, and, so for my capstone project at the Carsey
school, I'm going to be studying the intersection of disability and mental health.
Speaker 1
Which is.
Speaker 2
Love to hear.
Speaker 1
Yeah, yeah. So this is something that I, you know, I really want to delve into,
because I think that it doesn't necessarily get talked about as much as it should.
We've done a better job talking about mental health and a better job talking
about disability, but we still don't always talk about them together.
Speaker 2
It's like these two separate buckets in their own silos. And we don't realize that
they are really interconnected and interwoven. Yeah.
Speaker 1
Yeah, definitely. So I want to delve into that a little bit more. And I still don't totally
know exactly what that's going to look like, but I do know I want to learn more
about it, for sure.
Speaker 2
I want to circle back to that because I think that's a really interesting topic. But you
said so many things just like, as you were saying, you know, they're just lighting up
my, you know, different, different parts of my brain here. First of all, as a fellow
former campaign manager say, my day job does still require some electoral work
to do from time to time.
Speaker 2
As you know, Doug. And so I'm not quite, you know, off the drug of campaigning
entirely, but I've made it much more manageable, I think, to your point about
sustainability, right. And it's really nice to hear from one campaign guy to another
that the 2022 team that Maggie, Senator
Hassan, had in place, was so sustainable.
Speaker 1
And. Yeah.
Speaker 2
Because, as you know, my first campaign was 2016 and back then, which doesn't
sound like a long time ago for folks, but in Campaign World, that is a really long
time ago. Yeah. And it was a much different model. I mean, it was like a grind it
out, hustle culture, you know, work 80, 90 hours, eat garbage, junk food when
you're putting in data at the end of a, you know, 15, 16 hours a day, whatever it
was.
Speaker 2
Yeah. Rinse and repeat for like 6 or 7 days at a time. Right. Especially towards the
end of the election. And it wasn't until the 2020 election, and I'm sure Covid
played a part in that, some social isolation and maybe early onset anxiety that I
did not know I had at the time. And, you know, a lot of alcohol intake on
campaigns because, again, the nature of the job is you're
working those long hours and you are just exhausted and you just turn to really
unhealthy habits to cope and to have fun.
Speaker 2
Right? I'm doing the air quotes for those at home that maybe don't see this video
making air quotations, but they have a fun portion there. But it wasn't until 2020
that I really hit the wall. Like you said, when you hit your wall, I hit the wall.
Probably like 3 or 4 weeks out from the general election, which was a heck of a
time to hit the burnout wall in the 2020 general election, trying to get, you know,
Joe Biden elected.
Speaker 2
And I really made my first call for help and said, like, I need therapy. I actually said
the D word for the first time. I say on social media, I was like, I have depression, I
am depressed, and that I don't know how it was for you. But like when I actually
was able to sum up the courage to say that and to put that into words, not just for
myself, but, you know, out into the world.
Speaker 2
That was a big step for me, because before that, it felt like it was kind of this, hush
hush culture around it and like, taboo to be like, I'm depressed, mental health,
whatever, when really when I posted about it, I had so many people from the
campaign world, all these different campaigns that I worked on, whether they
were fellow, organizers or volunteers, whatever it was reaching
out and saying like, thank you so much for like verbalizing that because I also
struggle and I have not known how to say it and to ask for help.
Speaker 2
I mean, we know when we need help. I think everyone in the world knows, like I
need help on something. It's one thing to know. It's another thing to proactively
ask and make that plea for help. Right? Because it is a very vulnerable feeling.
Yeah. And so for me, that was like the first time that I, I really made that
verbalization.
Speaker 2
And then from there, like I made therapy a regular part of my life, I made running
and I'm a runner for folks, who listen to our podcast regularly. Know this guy now?
Probably, you know,
I've just really found this. There's much healthier outlets, and I stopped drinking a
year and a half ago, about a year and a half ago.
Speaker 2
I'm rounding up a little bit like a year in six months where we're getting to a year
and a half. Yeah. And, I really appreciated what you said about service and how
you've always wanted to serve and be a public servant, because that is something
that I found through dating certain people, gaining
my sobriety and being in recovery is that there were so many people in my life
who really helped me get to where I am today as far as my sober journey, and I
just want to like stay sober and pay it back.
Speaker 2
Like I just want to be of service now to help others. So I was really glad that that
was also, you know, something that's really important for you and that you said,
especially in the mental health field. Right. Like we said, it's still getting there,
especially in campaigns. Like we're really getting there, but we're much better.
Speaker 2
But it's still kind of taboo. And like you said, it's still siloed, especially in the
disability community. Mental health is one thing and disabilities are another. And
it's like, well, actually it's really interwoven. It just really lit up my brain. I was
really happy to hear you say that. Why do you think so?
Speaker 2
And you don't have to have a perfect answer here. I certainly don't have the
answer. Why do you say it's the same thing? Is that it's these two separate
buckets, those mental, you know, mental health and the disability community.
Speaker 1
Yeah, that's a really good question. I and the answer is I don't know. Because I
think that they, they're, they're so interconnected in so many ways. But yeah, it
just still feels like we, we talked about them as if they're two different, two
completely independent things. And yeah, I don't
really know the answer, but I'm hopeful that we'll make progress there because,
you know, you know, we have been steadily making progress in other areas on
mental health and disability.
Speaker 1
And I'm just hoping that we can start to connect the dots and, and help people
realize that, you know, these issues really are interconnected. And mental health
is also interconnected with economic inequality and racial inequality and LGBTQ
discrimination. And, sexism, misogyny, so many things. You know, so yeah, I, I
think that we're getting there, but part of, part of the
the problem, I think, is that mental health is still hard for a lot of people to talk
about, and understandably so.
Speaker 1
Because we still have a stigma. And I think that a lot of people, I know I felt this
way, I was kind of afraid to admit to myself that I was depressed. You know, it's
something that it's it really took some time for me to come to terms, but that is
what I have been experiencing.
Speaker 1
And it did feel liberating when I finally, you know, said it. It was almost kind of like
the first step towards getting, you know, getting help just to identify that I had,
you know, this problem that, that, that I needed to be honest with myself about.
Okay.
Speaker 2
I agree, especially the vulnerability side of it. And I don't know if this has been
your experience, and I've been pretty lucky to have the friends that I have in my
life. But I think as a man in society, to your point about stigma, there's still very
much a toxic masculinity culture around the word depression, around mental
health, because, you know, men are supposed to be men and
we're not supposed to show feelings and, you know, blah, blah, blah.
Speaker 2
And, and I do blame certain political leaders that will go unnamed on this podcast
for that culture. They may be orange in skin tone. But I really do blame that. And
almost I blame the bully culture. Right. Because it's so easy, I think. And this I think
is not just true of the disability community, but really any marginalized
community.
Speaker 2
It's so easy to punch down and to dehumanize, and it's a lot harder to just treat
fellow humans like humans when, yeah, that's what they are, right? I mean, I see
it when I'm running, in Manchester and I see homeless people all the time, right?
Because, you know, that's just a struggling population. We need to help our
neighbors and people the way they're talked to by society, like, oh, those
homeless people.
Speaker 2
It's like, wait a second, they're people. And I run by them and I run by the same
one almost every day. His name's Jimmy. Really nice guy. On Elm Street. I bought
him coffee before and stuff when I go to the shop and whatnot, and it's like, you
know, that's a person with a name. And once you can really make that human
connection, it really changes the whole vibe, right?
Speaker 2
Yeah. And that to me is one of the biggest things. And that's why that's kind of
been my approach with the mental health stuff is to really, once I named it for
myself, trying to help others name it and to always be there for someone else
because people are there for me and they're still here for me. I don't know if this
is your feeling, but for me, service is kind of like my recovery from alcohol.
Speaker 2
I'm never going be fully recovered from alcohol. You'll never hear an alcoholic say
I'm recovered. You will hear them saying, I'm in recovery. Yeah. Because it's an
active state of being constantly day to day. And I feel like for me anyways,
personally, that's how my depression is as well. It's
like I am, I am actively depressed, but I'm also actively doing things day to day, like
you said, to
fill my own cup, to make myself happy, to bring myself so much meaning and joy.
Speaker 2
And part of that is doing that for others and that brings me joy is helping others.
Yeah, but I don't think depression is something that and mental health is
something that you snap your fingers one day and wake up and go, I'm great. I'm
happy now. Like I'm fixed because there's nothing wrong with you in the first place
if you have depression.
Speaker 2
And I think that goes back to the stigma, is there's something wrong with me, like,
why am I sad? To your point, you're like, you're saying you cried some mornings,
like, why am I doing
this? And in your head you're like, what's wrong? And that takes a lot of
intentional rewiring in your brain, but it also takes people around you to wrap you
up with love and support, to say, there's nothing wrong with you.
Speaker 2
You are you and you are beautiful just the way you are. But I think depression, it's
like I say, it's like the ocean. And I think you and I talked about this maybe last year
when you first kind of came to me and told me about your struggles that you were
having, I was like, I feel depression is like an ocean waves or like some days the ocean is nice and calm and it's yeah, everything's going great.
Speaker 2
And some days, like a force of nature, the ocean is tossing and turning and it's a
bit turbulent and it ebbs and flows. Right. And I think recognizing that that is a
state of being is a very healthy thing to do.
Speaker 1
Yeah.
Speaker 2
I don't know if you've had that experience, but that's for me has been my
experience with my mental health.
Speaker 1
Yeah. You know, it's definitely been my experience as well. I mean, I mean, I'm
doing a lot better than I was a year ago, but depression is still very much a part of
my life, and some days are better than others. But I think what's important and
something that I've learned to experience in terms of, what what I've learned to
appreciate as I navigate my depression is trying to celebrate,
like the little victories, even just even something as little as just like, you know,
getting out of bed and going for a walk or, it could be really anything.
Speaker 1
But, just kind of the, the little, the little day to day things that can sometimes be
hard, but learning to, like, celebrate those things and give yourself some credit for
sort of putting one foot in front of the other and just keep it, you know, and keep
moving.
Speaker 2
I agree entirely. And it's it's it's kind of nice you said that because we had a we
were reading this book at my in my day job about like the fundamentals of
grassroots organizing. Right. Like what makes a good grassroots organizer, what
goes into a good grassroots organizing campaign?
Just the ins and outs of fundamentals. And one of them was to celebrate your
wins, no matter how big or small they are, because I think it's so easy, especially in
the work that we do, and especially like trying to advocate for an advocate with
the disability community.
Speaker 2
You know, it's an uphill battle a lot of the time. And it's so easy to get caught in the
grind and the feeling that like, man, nothing's going to change or this is going to
take a really long time to really see big impacts. But little victories stack up into
huge wins. And I think recognizing that and we talked about that and work
together to celebrate those small wins, no matter how small,
because, hey, keep you motivated and excited and going and be, you know, keep
the people
around you and the community around you feeling like they're part of something
bigger and that they are really tangibly moving the needle on something.
Speaker 2
Because it is so easy in today's society to, like, get down on yourself and beat
yourself up and not step into your power, acknowledge those wins. I'm a big
advocate of people stepping into their power. Both at my day job and in my life,
my personal life, I was talking to a buddy yesterday who's trying to get into
running, and of course, he calls me because why not?
Speaker 2
I have apparently good advice on that. I wouldn't, I wouldn't listen to me. But he
wanted to and he's like, hey, man, like I'm having a really hard time. Like, I can
only run like a half a mile right now before I have to stop and catch my breath and
whatnot. And I'm like, okay, but that's a half a mile further than you were running,
Speaker 2
Like two months ago or three months ago. Right? Right. And so like, I think it's just
the way you frame things in your head and really recognize that. And once I told
him that, I was like, you know, that's too cliche when I told him this, but I was like,
getting into running is a marathon, not a sprint.
Speaker 2
Yeah. You know, he very clearly said he will never run a marathon, which I as
someone who's done one, I think it's a very wise decision. But you know I'm like
and I think that's true of anything any campaign you're on any you know day to
day when I'm, when I'm actively working through my mental health struggles and
my depression, it is a marathon, not a sprint.
Speaker 2
Like, I'm not going to wake up and feel amazing one day, like I'm cured. Like I know
down the line something to come up and I'm struggling with it. And that's okay.
That's part of the process. It's all a process. And that's who you are when you
wake up the next day is not who you were when you went to bed the night before.
Speaker 2
Like today?
Speaker 1
Absolutely. And I think that's something that can be hard sometimes is showing
ourselves, you know, that grace and, you know, like kind of, you know, going back
to the campaign world because, like I said, and I can't speak highly enough about
them, like the leadership of Senator Hassan’s campaign, they, you know, were so
good to us, you know, gave us, you know, like I said, gave us so many days off and
gave us so much time to take care of ourselves.
Speaker 1
And, you know, I was still putting all this pressure on myself. And when the
election was over, one of the, you know, members of senior staff, you know, high
up in the campaign, you know,
said, you know, said to me point blank, they're like, you know, because we were
talking about what, you know, we want to do next.
Speaker 1
And so and like I said, they took such good care of us. They helped us get jobs, you
know, after the campaign was over. They're just some of the most amazing people
I've ever met. I just can't speak highly enough about them. But one of them did
say to me, you know, you know, you have great employment opportunities ahead
of you, but what I want for you more than anything else
is for you to start being kind to yourself.
Speaker 1
I think that that's something that in mental health that can be really, really
challenging because I can't speak for everybody, but for me, my depression often.
But, it still does at times manifest itself in a self-loathing kind of way. Yes. I think
finding a way to show kindness to ourselves is,
you know, it's an ongoing process, but it's such an important part of it.
Speaker 2
I couldn't agree more. I'm the exact same way, honestly, like I am. Everyone
knows, and my therapist has said this before. She's like, you are so good at falling
on the sword when it comes to things, but you are really bad at giving yourself
grace and giving yourself some extra rope and flexibility, right? But things happen.
Speaker 2
Yeah, because I am very hard on myself, both in my work like I am. I wouldn't say
I'm a perfectionist because perfection is unattainable no matter what it is, but I
am very hard on myself at work. I'm very demanding of myself as a runner,
because I have lofty goals and lofty ambitions and whatnot. And anytime I have a
bad run or a bad race or something, I'm like, I'm really hard on myself.
Speaker 2
I really am, even though I have to, like, kind of remind myself sometimes, like, why
am I doing this? Like, kind of recenter myself and rebalance myself. And that part
is tricky, like exactly to your point. And I think that's where the community around
you comes in, at least it has been for me, positive affirmations and people around
you.
Speaker 2
But they can't always do it for you or be there for you. And I think trust, you know,
once you learn to love yourself a bit, then you can help others and that light will
kind of radiate out from there. Yeah. And for me, I joke with friends that I'm like
the most extroverted introvert I know.
Speaker 2
And it's so easy to like, you know, I get that sometimes I lean into that introvert
side, right? And just stay home. Like, just as happy, stay at home reading a book all
night as I am to go to a gathering or go to a group run or whatever. Yeah. But I
always feel better once I am surrounded by those people, like you said.
Speaker 2
Or once you go out for a walk or something. As someone who's worked in politics
and you work in politics, what is something that you wish either campaigns do
better. And it sounds like Maggie's campaign was fantastic, but in general,
campaigns to do better, or that politicians could do better, like the public policy
side of it. Like, what big things do you think we should be
advocating for and that, you know that the disability community should be
demanding of their elected officials?
Speaker 2
Yeah.
Speaker 1
Yeah. I really think that Senator Hassan's campaign was such a great model for
how campaigns should be run. In addition to, you know, giving us time off and
making sure that, you know, we had adequate health insurance that, you know, so
that we could seek mental health care and things like that. The campaign also
created a culture where we just checked in on each other and, you know, we
would talk to each other just on a personal level to see how we were doing.
Speaker 1
We, you know, really, we're, you know, all of us on the team truly were our
friends. And so I think that and that culture starts at the top. And, you know,
Senator Hassan is somebody who is super compassionate. And I think that, you
know, to her credit, she hired leadership that was also super compassionate. And
so that culture just kind of permeated the campaign.
Speaker 1
So I think that, you know, part of what I want to see other campaigns do is
basically what Senator Hassan's campaign did successfully, and that's create a
culture where it's okay to talk about mental health and where we're checking in
on each other, and we care about each other. And like I said, the struggle for me
was even though they gave me all the tools I needed to take care of myself, I
wasn't utilizing those tools.
Speaker 1
And so I think that that's for me, that was the missing piece. But I think that in
terms of how the campaign was run, it was really a model of what a campaign
should do. You know, you need to, you know, you know, make sure that people are
open with each other and, you know, feel safe.
Speaker 1
You know, talking to, to to leadership about things like this, I do think the culture is
moving in the right direction. You know, like I said, my experience on the campaign
in 2022, you know, was so different from other campaigns that I've been a part of
in the past. Like, you know, because I started, you know, as a volunteer back in
2008, and the culture was.
Speaker 2
Just started eight years after you. So you got into the political arena.
Speaker 1
And
Speaker 2
The elected official and not me.
Speaker 1
But like in 2008, the culture was just so different. You know, it really people I
mean, you know, because we all had this attitude that like, we're we're changing
the world and we need to just put in as much time as humanly possible. Whereas
on Senator Harrison's campaign, they understood that you're not going to be
doing your best work if you're not, you know, able to take care of yourself.
Speaker 1
And so I think that, yeah, like I said, I just can't say enough positive things about
that campaign. And I really think that it's a model for how our future campaigns
should be run. And I think that although I'm not part of the campaign, I do think
that Biden's campaign has, a lot of these values, as well, from what I've heard,
which is a really positive thing.
Speaker 1
So I think the culture is moving in the right direction. But it's also up to us to make
sure that people who are struggling with their mental health know how to utilize
these tools because, like, I said, our employers can help give us the tools we need.
But if we don't, if we're not comfortable asking for help, then there's still a
disconnect there.
Speaker 1
And that's more of a cultural problem, that goes beyond campaigns and goes
beyond politics. And so that's part of that stigma we were talking about, that we
have to address so that when people are given the tools to take care of
themselves, they feel comfortable doing it and they feel comfortable asking for
help. And they know that, like, that's okay.
Speaker 1
It's more than okay. It's a great thing. So I think that the campaign culture is
moving in the right direction, but the larger culture, the beyond campaigns, I think
there's still a lot more work to be done.
Speaker 2
Yeah. I think like, you know, you've known me for a number of years, man. I'm like
a very and most of my deep friends would say this like a vibes based person. Right.
Like when I enter a space, I can kind of get a reading to the people around me and
I can be like, okay, I either feel comfortable being myself in this space or I have to
kind of like put on a front or put on a mask in a way.
Speaker 2
Right? And to me, it's about surrounding ourselves with those people that bring
the best side of ourselves out and allow us to truly be ourselves. To your point, but
also, I think to the larger, societal question and the culture question. I just think
we lack empathy as a society. And I don't know if that's a uniquely American
phenomenon, because I've traveled not as much as some of my friends, but I've
been to Greece.
Speaker 2
A few summers ago, and it's a very warm, open kind of culture. People are very
effusive with their praise, and they're very friendly, and strangers off the street
will just come right up to you and shake your hand and just strike up a
conversation. I don't think you get that as much in the United States, and
certainly, I think not as much in New England as someone who's grown up here.
Speaker 2
We're very, like, warm on the inside, cold exterior kind of vibe in New England.
And, it's not always the most, you know, welcoming environment. And you don't
feel welcome to be yourselves. So I really think getting to a place of empathy in
society and really developing that as a culture is really important so that we
should learn to treat people like people like, I was kind of saying earlier and to get
away from the issue minimization, I won't name context because I
want to keep it moderately apolitical.
Speaker 2
But, you know, there's certain conflicts happening throughout the world right now
where it's really easy to humanize people, as you know the other. Right? And for
those that aren't watching videos, it's so easy to “other” people. It's a lot harder
to, like, meet them on the level and be like, that's a fellow human, that's a person.
Speaker 2
And I think as someone who's kind of been getting more and more familiar with
the disability community through my work here at the council, which I've just
been so blessed to be able to do. Like I said to you at the beginning, before we
started recording, I started this job thinking like disabilities for me. My brain
reverted to physical disabilities.
Speaker 2
It didn't necessarily go to the mental or to the developmental side right away, and
it's only through being surrounded by this community in this work over the last
couple of years, and really putting in some intentional effort to learn, people that
know me know I love to talk. I mean, I'm doing all these podcasts, right? Like I love
to talk, but I think listening is a lot harder.
Speaker 2
And once you can intentionally close your mouth and open your ears and listen,
you learn so much more. It makes you a more attuned person all the way around,
and you're more receptive to people being able to share. I think I tend to think
that the human body is very smart, like we have little nerve endings in our body
that will tell us if an environment were in a safe or not safe and the body knows
and you pick up on that the minute you enter a space, and once you're in
that empathetic space with empathetic people, you will feel more naturally in
your body, at ease and more centered and able to, you
Speaker 2
know, express and share to be yourselves and share those struggles. And it sounds
like that's what Senator Hassan's campaign was for you, in addition to probably
some friends off the campaign trail. Hopefully that is, you know, kind of providing
that space for you. Yeah. You know, not being super political, but like, let's say
Doug Marino was elected president of the United States.
Speaker 2
What would be your top 2 to 3? And you could shoot from the hip. You have to
have these perfect top 2 to 3, like policies or initiatives that you would want to roll
out to either break down those silos between mental health and disabilities or to,
you know, create a more normal and even playing field for the disability
community.
Speaker 2
Because I think a lot of people view it. It's like they want special treatment. We got
to do all these things and it's like, no, they just want to do the things that you're
doing the way that you're doing it. Yeah, they don’t want to be treated as special.
We want to stop the word special.
Speaker 1
Yeah.
Speaker 2
So now how do you feel about that and what would you do? Let's say again the
type of fun hypothetical president Doug Marino because my soul believes that you
get there someday. Yes. You go, I'll knock all the doors for you. Like what would
you do? Well.
Speaker 1
You know, if we could get it through Congress, I mean, I, I think one of the big
things is that we need a health care system that makes this kind of care more
accessible. So where, you know, no matter who you are, you have access to, to
health care, whether you know, regardless of your income, your ability, you know,
we need to treat this kind of healthcare and health care in general as a real human
right.
Speaker 1
And, until we do, there's going to continue to be real disparities in terms of who
can seek mental health care and who can, you know, which people with
disabilities can access the accommodations that they deserve. So, you know, do it
until, you know, we have to move to some kind of, in my opinion, some kind of
universal health care system.
Speaker 1
Where we recognize health care as a human right. And I also think some of it is
education. I think that we need to be teaching kids at a young age that our
differences are not something to be afraid of. But there's something that should
be celebrated. But perhaps even more important, be understood.
Speaker 1
You know, I think that so often we are afraid of the things that make us different
when in reality, I think the things that make us different and make us unique are
things that can make us all stronger if we learn more about each other. So I think
that, you know, it's a healthcare issue, it's an education issue, and education really
gets into that cultural side of things where we change
the way that we talk about disability and mental health, and just health in general.
Speaker 1
So I think those are the top two things that come to mind in terms of changes that
we need to make. Now, especially on the healthcare side, you know, we're going
to need, you know, some cooperation in Congress to make some big changes. I do
think that the Affordable Care Act was a massive step in the right direction.
Speaker 1
Such a massive step in the right direction. But we all know that there's more work
to do. Because, you know, everybody should be able to have access to, to, to care,
regardless of your socioeconomic status, regardless of your race, gender, sexual
orientation, your identity, or if it should, it should be available to everybody.
Speaker 1
And we just and and like I said, we I think we need to be teaching our children in
school to that, to to care for one another and embrace the differences that we
have with one another.
Speaker 2
I couldn't agree more on both fronts. Let's start with the children. One, because I
had something fresh in my head and let me circle back to your first point. You
know, I tend to think, and I'm not a teacher, I am a soccer coach, off and on. But I
tend to think that kids don't recognize differences as negative and bad until
they're told that that is the case, right?
Speaker 2
Kids? Just like, unless you ever watch kids, like, just play with each other. Like all
different colors, all different creeds, all different genders, you know, some
disabilities, some not. Yeah. And they don't care. They're just kids having fun being
kids. Division and fear and separation is not. You're not born with that. You are
taught that, right?
Speaker 2
We're born to love. We are taught to hate, in my opinion. Yeah. I think about
education, the kids. And then on the health care front and, you know, the friend
I'm gonna reference here, I tend to think about mental health as far as getting it
through Congress and getting these packages and policies passed. It's not a
partisan issue at all.
Speaker 2
To quote a friend that we both know about, like paving sidewalks or potholes. You
know, there's no Republican way to pave the street in a Democratic way to sell a
pothole. Right? It's a pothole. It's paving a street. And I really do view mental
health as the same way depression and mental health struggles impact everybody.
Doesn't matter.
Speaker 2
Like you said, your socio economic background, your politics, you know, where
you live. Everybody has it. And I think recognizing that it's a first huge step to
actually making tangible inroads. And I think that's why in New Hampshire, you'll
be able to correct me on this, because you've done some work in the State Senate
and, you know, in our legislature, not as an elected
official, to be clear.
Speaker 2
So he was on staff. So the New Hampshire State Senate. So Doug knows how
things move through the State House. My vibe in New Hampshire at least, is that
there is actually quite a bipartisan consensus on a lot of mental health initiatives,
if you will.
Speaker 1
Yeah. And even on disability too, you know, I, I know I sound like a broken record
because I keep singing her praises. I, as people can obviously tell, I'm a huge fan of
Senator Maggie Hassan. But when she was governor, we became, I think, one of
the first states, if not the first states, to ban the payment of subminimum wages to
people with disability fees.
Speaker 1
Yeah. Before she became governor, it was actually legal to pay people with
disabilities below minimum wage. And then when said to me, yeah, it's
unbelievable. But. And then when Senator Hassan became governor, she made
sure that that was fixed. And I don't know, I think we were either the first or one
of the first states to do that.
Speaker 1
And it was totally bipartisan. It was unanimous in the House, unanimous in the
Senate. When the then governor hadn't signed it at the signing ceremony, had
lawmakers from both parties. And it was just a really proud bipartisan moment for
our state. So I do think that around issues of disability and mental health, there is
bipartisan consensus.
Speaker 1
And, there is good work being done. But part of the problem is that our
lawmakers can only do so much, they have a huge role to play, for sure. Like I said,
in terms of expanding health care, improving education policy and things like that.
But some of it also comes down to how we treat one another, which is something
that, that often goes, you know, legislating our elected leaders can set the tone.
Speaker 1
I do really believe that that, that, that elected leaders can create can help move
the culture. But it also goes beyond politics too.
Speaker 2
I agree entirely. Like I said, you know, an attempt like my, my interactions running,
you know, around Manchester and seeing the homeless people. I just treat them
like people, right? I don't I don't look down on them. I don't spit in their direction.
I'm not, like, in my head after I run by, like I'm screwed or whatever.
Speaker 2
I'm just like, that breaks my heart. And like, we need to do more for them. Where,
like, among the most among our most vulnerable in society. And it really is a
culture thing, right? It is. It is really rare and collectively as a society to bring that
culture and bring in that empathy. And I tend
to think, or maybe I'm a hopeless optimist, who knows?
Speaker 2
But I tend to think that if we each do our part to to start to foster that empathy
and that culture of acceptance and, and just treating people like people that
through time and overtime, we will get to that place, as we start to stack up as
people and especially the younger generations, man, like, you know, you and I
have both worked with young people in various capacities, and it's kind
of hard to work.
Speaker 2
The kids are alright, as I like to say, like they know what they're doing. They have
they're very empathetic. And I'm really excited to see these young people kind of
taking over many young people's lives. Zoom podcasts rather take over faster. We
want you in charge. For sure. And so that, to me, is just really encouraging to see
young people taking the reins, especially in the disability community.
Speaker 2
I've interacted a couple times with someone named Jules Good.
Speaker 1
Yeah. They're both really.
Speaker 2
Really trailblazing young people that are just. Yeah, like I said, blazing a path
forward in inclusivity. And, equality. And it really, you know, makes me very happy
just to see folks like that doing the good work.
Speaker 1
Yeah. And what's really cool about people like Leah and Jules is that they make a
difference not just through their work, but also just the human beings that they
are because. Because they're genuinely just such good people. And just like the
way they live their lives and interact with
people, they move the ball forward that way too.
Speaker 1
So I agree with you. I think that there's so much potential, you know, in terms of
the up and coming leaders who are, frankly, current leaders already.
Speaker 2
They're definitely leaders in the disability community.
Speaker 1
And, and are going to continue to be leaders for a long time. And. Yeah, so I, I, I
am also optimistic that the future is bright. I know I may not always feel that way
because like you said, there are so many things going on in the world that are just
so tragic and heart wrenching.
Speaker 1
But in my heart, I do believe that brighter days are ahead. I, I truly do.
Speaker 2
Yeah. I like not to be too cliche, but one of my favorite artists, actually, my favorite
artist. My favorite musician, his name is Noah Kahan and I'm sure any New
Englander probably has heard that name many times by now. You know, the man
of stick season and all that, but he has this amazing song. Its name is Call Your
Mom, which is really about mental health, mental health struggles.
Speaker 2
For those who haven't heard it, it's really a beautiful song and it makes me cry
every time. Like, it sounds really gorgeous. But he has this line that he says, all
lights turned on can be turned on. Yeah, and I think that's so true. And when I
heard that the first time, I was like, wow, like to hear that put to words was really
nice because it is so easy when the lights, you know, so to speak,
get turned off and you're in the crux of your depression.
Speaker 1
Yeah.
Speaker 2
Especially I would, you know, for the disability community who already has so
much stacked up against them as it is, I can only imagine how hopeless it can
seem like in the middle of the ocean if you're just drowning. And then all it takes is
remembering or having someone there to be like, actually, we can turn that light
back on and then once you do, it's like, you know, on, like
it's flipped on and I flip on another one, but it's like it's an ocean of lights.
Speaker 2
Right? And we just, like you said, brighter days. We light up the world one day at a
time. So really grateful that you said that. Wow. Thank you. And allow me to talk
about my parents at the same time. So shameless plug always for Noah. To circle
back to the capstone because we are sort of coming on time and I really want to
hit the capstone.
Speaker 2
Yeah. What? I know it's still in its process, and you're kind of formulating it, and
it's kind of like bread in the oven. We're not sure how it's going to come out yet,
but we're excited. We know it's going to be yummy. We're not sure yet. What is
your big hope with it? And how do you think you can take it once it's done and
bring it out to the world to make sure that, in fact, that you're okay to make.
Speaker 1
Yeah. So my hope is to bring some more awareness because, as we know and as
we talked about there, there are a lot of barriers to accessing mental health care.
But those barriers are amplified for people with disabilities. And that's something
that I'm really hoping to bring attention to. Especially like, you know, for
somebody with disabilities, if they have a mobility disability, it can be hard to even
get to a doctor's appointment to get to a therapist.
Speaker 1
If you're a person with a mobility disability and you live in a rural area, telehealth
may not even
necessarily be an option. Because if you don't have, if you're in an area that
doesn't have great broadband, then that can be another problem. And so, so
many of the hurdles to get to mental health care are just that much more, that
much more difficult for people with disabilities to access that.
Speaker 1
And so my hope is to really kind of compile through, like, statistical analysis where
those barriers exist, how bad they are, and hopefully bring some awareness to
some policy changes that we can make to make sure that people who have
disabilities, have access, can access mental health care. Because that's really my
hope is to try to, so what I'm hoping to do is, is look at other states and see if
there are any states out there that have moved the needle on this issue.
Speaker 1
You know, look at to, to study if there are other states that have a really low rate
of uninsurance under, for people with disabilities, states that, you know, have,
protections in place to, to make sure that people with disabilities, with, with
disabilities can, can access health care and then see if maybe we can incorporate
some of that into New Hampshire.
Speaker 1
So that's really my hope is to just compile a lot of information and hope that
maybe it can lead to, to some bipartisan policy changes, because like we said
earlier, people on, on, on all sides of the political spectrum, agree that this is a
problem and want it to be fixed, because the reality is, is that whether you're a
Democrat or a Republican, there's a good chance that you probably
love somebody who has a disability.
Speaker 1
You probably love somebody who struggles with mental health. And we all want
to help. And so I think what I'm hoping to do with my capstone is just identify
what some of those solutions might be, and maybe we can all get behind them.
Speaker 2
I love that, can't wait to promote that, by the way. So once that is fully fleshed out
and in process or, you know, even ready to share and disseminate with the world,
we at the Council are very eager to help do that. And also, I just want to plug into
the project when it makes sense and yeah, help it along.
Speaker 2
And here I'm the data manager at my day job, you know, numbers and statistics
and all that research. So that's my love language man. You know that the same
thing is the same thing as a runner. Like I get into the stats and the data, and you
know, yeah I just nerd out on all that all day, every day.
Speaker 2
But I'm really glad we had the opportunity to record this specific episode that
Vanessa, my boss at the council for those and obviously probably know Vanessa.
She's wonderful. She said I should go ahead and do this with you because she
knew it meant a lot to me. Mental health. It means a lot to you. I firmly believe
that I would not be here today if not for the people in my life
that were there for me in those low moments, and that's just what I want to bring
out to the world, right?
Speaker 2
Pay it forward, be of service. And I really do think this podcast can be of service
this episode. If two people listen to this episode and feel better about themselves
and can, you know, maybe be more open and verbalize their struggles then, then
we've succeeded today.
Speaker 1
Yeah. And maybe then those two people can go on and help two more people
and, and that's just how you pay it forward.
Speaker 2
And so, 100% could not agree more, my friend. Is there going to be ways, you
know, for the folks at home to tangibly follow up to, to follow along with your
capstone, or will it be promoted once it's done? Like how will that get kind of
shared out with the world? What do you envision?
Speaker 1
That's a great question. The honest answer is I don't really know yet. So, the best
thing I can say is, you know, stay tuned.
Speaker 2
Stay tuned.
Speaker 1
I'm going to try and figure out how it's going to work.
Speaker 2
So I love to stay tuned. Stay tuned. It's great. You know, we love to, to leave with a
little anticipation like, yeah, people hanging for a sequel. Right? And yeah, people
sure, once it's done and we can, like, have a follow up episode down the line.
Speaker 1
Yeah, yeah.
Speaker 2
To dive into the capstone and some of its findings and, and really bring that out
into the world. Yeah, I'm really excited to see how that comes out. Yeah. And you
know, the impact it's going to make because you already make such an impact in
the work you do, man. And the people you talk to. Like I said, you're one of my
favorite people in New Hampshire politics.
Speaker 2
So.
Speaker 1
Well thank you. The feeling is very mutual, Blake.
Speaker 2
So, thank you for being you. That's what I tell people, too. Like, you don't need to
change a thing about you for listening to this episode. Like, keep being yourselves.
You will naturally attract the people in your life that are meant to be there and will
help the energy you cultivate to swim and sing along, as one of my friends once
told me.
Speaker 2
And I really do firmly believe that. Yeah. You know, people are going to come into
your life that help your energy swim and sing along and help you grow as a
person, and you're going to be that much better for it. So that's kind of the
message I hope to leave folks with today. You're going to be able to find this
episode on Spotify, folks.
Speaker 2
Like I said, we'll have the transcript available. It'll be posted on our Facebook, on
our Instagram, most likely because Doug and I have to get a non-cringe worthy
photo of the two of us to post on Instagram for it. And, like I said on the website
and some other places that we will post about, let folks know about can't wait to
see everything come to fruition.
Speaker 2
So, you, my friend, keep doing the good work. And in Brentwood. By the way, I
would like to thank you for that. Yeah, more young people in places of power are
always needed. And I just really appreciate everyone at home that was able to join
and listen in today. And Doug, really appreciate you being willing to drive over to
Manchester today.
Speaker 2
Recorded and to talk about this really deeply personal, you know, topic. I really
appreciate knowing the raw honesty and you being you. I appreciate it. Yeah.
Speaker 1
Well, thank you so much for having me. It was, yeah, it was fantastic.
Speaker 2
All right. Hey, folks, have a great holiday weekend. It's Memorial Day. We managed
to record this like madmen on the Friday of Memorial Day weekend. And then we
got it done. So, I really hope everyone has a lovely weekend, a good Friday, and
we will see and speak to you all soon. Be well everyone.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was
a production of the New Hampshire Council on Developmental Disabilities
produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to
Josh Hardy and rest of the crew here at Concord TV.
We love to have guests with differing perspectives. These are personal, and do not
necessarily represent those of the DD Council.
Episode 22: Direct Support Professional Month
In this episode we hear stories from paid and unpaid caregivers and give a shout out to the Direct Support Professional workforce.
Learn More:
ANCOR – A community of providers for people with disabilities
ANCOR's Direct Support Professional Recognition Week
NADSP – National Alliance for Direct Support Professionals
Episode 22: Direct Support Professional Month
Episode 22: Direct Support Professional Month
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Patricia Vincent-Piet (PVP): Hey, and welcome to another episode of That’s Inclusive! Today we’re talking about Direct Support Professional month. Vanessa and I have something to share with you guys, we have a couple of great stories from caregivers. There’s a reason why you can get a Doctorate in Human Resources; hiring and retaining good staff takes skill. I can’t tell you how many times Jim and I hired a personal caretaker, and a couple weeks in discovered that they couldn’t handle a key piece of the job, we ended up working around their limitations. We look at each other and ask, “why we didn’t screen for this?” then we go, “oh yeah, we’re not HR professionals.” Paid caregiving work requires a lot of what HR people call “soft skills”. You’re going into somebody’s home, and providing some really intimate services. Good caregiving requires emotional intelligence and maturity, which very few people in any line of work have. You have to know the official rules of the program you’re working under; you have to balance helping someone live their best lives with following rules. You have to know who the boss is. Is it the person you’re supporting, is it their guardian? Can you help them advocate for themselves without overstepping your bounds? You need to be willing to subject your own moral welfare to theirs. Maybe they want to do something you find questionable, are you good with that? This is just a peak at the mental gymnastics required to do this important work. Not to mention all the physical work you put into it. I always cringe when I hear paid caregivers talk about how rewarding the work is. Yes, some of the things you do may be rewarding, but if you’re coming with all these emotional wounds you think this will heal, that’s a problem. Its not the job of the person you’re caring for or their family to do their best to replace the missing relationships in your lives. We ask so much of care professionals, they deserve to be paid well and have access to their own care. We have several who can’t get the medical or mental health care they need, because insurance isn’t part of the deal. Jim and I want all DSPs and other paid caregivers to know how much we appreciate them, and we’re working to help get them the support they need. Here’s a couple of their stories.
Molly (DSP): My name is Molly. I have the absolute honor and pleasure of working with a young man, I’ve been working with him for a little over 2 years now, 2 and a half, wow, almost 3 years, a young man with autism. I had worked other jobs in the human services sort of thing. I was a driving instructor for a while, and then when the world shut down, everything shut down, and I started seeing this therapist, there was a lot going on with me, in my head. Getting to know this therapist, and her getting to know me. I have always to fix things, take care of things, I sort of throw myself into that. She knew that I needed a job, right, my driving school job had closed down forever. She asked me if I had ever heard of a position called a DSP. I said, “what is that”, and she told me a little bit about Direct Support Professionals who just help somebody with whatever it is that they need on a day-to-day basis. I looked into it and a place was hiring and I started off in a float position. So, I’d be working with one person with a few hours during one day and then go and hang out for a while with another person. I got to know several people, then there was the first individual I spent time with, his program hours were about to expand, and the company I was working for was about to hire a permanent person and I was going to train her, and she was going to take my seat at this table, and I was like, “I’m going to miss him”. I had already started to get a connection and really feel just sad at the prospect of parting ways. I said, “I would really like to be not float anymore and be permanent and can we just put me here?” and they did 2 years ago now. It’s been the best 2 years of my life, working wise. You know, life is still life of course, but I have learned so much. Just so much about myself, because you learn what your strengths are, maybe what your weaknesses are. I have learned so much about communication because the person that I work with is minimally verbal. He just has certain ways about him that have really taught me a lot. The last while now, probably about a year or so, we’ve been working on, its okay to not be okay. He doesn’t want to talk about it when its not okay. You ask him how he is, “good” he’s good. Nowadays he’ll say “relax”. He wants to relax, he wants to be happy, he wants to just be good, and don’t we all want that. So, it’s been a journey doing relaxation techniques and talking about how it is okay to not be okay. It’s such a wonderful reminder of the humanity in all of us. It’s been really, really incredible.
Sue (DSP): Hello, my name is Sue Fernley, and I just want to share my caregiving story. It seems like I’ve been since 2019 when my daughter, who was 35 at the time, had stomach issues and got a colonoscopy and we discovered that she had colon cancer and would need an operation, chemotherapy, and a lot of caregiving. She lives in California, at the time, I owned a campground. Before the campground closed, I flew to California and started the caregiving with my daughter. From there, my son decided, he was 40, he was older, and he decided to get a colonoscopy also. He was diagnosed with a large tumor in his rectum. He has 2 children and wife, so I flew, after my daughter, flew to Rhode Island to care give. His was a little bit more intense. He needed radiation, he needed a bag, he needed an operation, he needed chemotherapy also. It was a long process with him, and again, I was with him and his family for a good year. During that year, COVID hit, he had to go to Boston to have chemo. There was no one around to help. His wife went into a rehab at the time, so it was me caretaking with children and him. So that was the beginning. From there, my brother had heart problems. We owned a campground, as I said before, we had a campground, a family campground. So, we went there with him. So, I was with him in the last stages of his life, he was in hospice, I was the last family member with him. That was very long and a hard thing to go through, he died in September. Two months after, my mother had dementia the whole time. My mother will be 87 in February, my father will be 89, or just turned 89 yesterday. After my brother died, I found my mother in the driveway one morning, in the beginning of December, she had fallen. She’s fallen several times, broke her arm, broke the humerus bone in her arm. So, that was the beginning of caretaking and living with her, sleeping with her for a while. Again, my father drank heavily and gave my mother, who has dementia, alcohol too. So, the falls were many, and many broken bones, until finally she had terrible pain in her stomach, she had pancreatitis from the alcohol, so that had to stop. Right after my mother had broken the humerus bone in her arm, I get a call in the morning and my husband, who had been dizzy for a full month calls me and says he can’t get out of bed. He had a stroke, is what we found out was happening. So, I am still in this process of caregiving. It’s one thing after another, with my family members. This is my first time sharing, and listening to other people at this conference, it’s the one thing through all of this that has given me hope. That there are other people out there who can help me, encourage me, listen to my story, I can listen to their story. They help me not be alone, because I have felt alone. I am grateful for being here today, to share, because we are in the process now of putting my mother into a nursing home, which I don’t think she is going to like, and I have mixed feelings about it too, but that is probably going to continue, but we shall see. Thank you for listening.
Suzanne (caregiver): I am Suzanne ____, I am the caregiver for 2 adult children, I was the caregiver for both of my parents, and I am also a professional caregiver providing case management for a community mental health center. I came late to this career change and one thing that has been a surprise to me is to find out that all the things that I did before starting my work as a case manager, serve me in my role. Taking care of both my children, with their different medical complexities, helping my parents navigate their medical situations, and all of their insurance situations, at the end of their lives, help my job as a cashier in the grocery store and a bank teller and a medical secretary and a medical biller. None of those things would I have thought would be important in my role today, but they are. This is something that I try to bear in mind. Everybody has their experiences that they may not be aware can help someone else.
Julie (DSP): My name is Julie ____ and I work actually in a brain injury adult group home. My is story is about a gentleman that I advocate for. All our coworkers were sitting in the, I’ll say living room, and we’re all just chatting. My little buddy, Tom, I’ll give you that much, was in finishing his shower. Tom has some anger issues, part of his brain injury, a different worker had set up his clothes, not know that things have to be in order. They were out of order. In that room, poor Tom screamed in such a manner that, I would call it volcanic. It was this huge, volcanic scream, that we all came running. When I opened the door, he was on the toilet. He’s got all his clothes on, and I said, “Tom, what’s the matter?”. He said, “My shirts inside out”. He can’t stop, he’s very upset so we told him to breathe, just take some breathes. He said, “I can’t do that”. It took him a long time to bring him to center, he finally did. He says this all the time, he said, “you’re a queen”. The interesting part, to me, is that everything can be going so well for somebody, and it doesn’t take much in a brain injury for it to be all thrown off. The whole house came running because he was explosive. We were like “what happened, what’s wrong?”. It was the simple thing that his shirt was inside out. So that’s kind of my story, I really have a ton of them. It’s been a pleasure to work for Tom, it’s been an eye opener for all of us. I have a ton of other stories, but that one is recent and stood out.
Carrie (caregiver): My name is Carrie ____ and I care give for my daughter, Katie, who is 12, and experiences the developmental disability down syndrome. So, a story about caregiving for Katie actually just happened this morning. I am single parent and a working mother, and to try to get my daughter out of the house on time, to be able to go to work is always a challenge. Katie has a set routine every morning, but there are just some mornings where she has a mind of her own and decides, “you know what, I’m not actually going to go to school today, I’m actually going to stay home.”. She will do everything possible to make us late until decide “alright fine, you don’t have to go to school”, which never happens, but that’s what she is trying to do in making mom late for work. In sharing that story, I know that isn’t just for a parent who has a child with a disability who they are caring for, that happens to all parents. Behind the scenes, behind the curtains, there is a lot to just starting our day. There’s medication, there’s breathing treatments, are these the right clothes, are the tags on, is it the right texture, is it the right length, is it the right color, and even the outfit she decided on last night is not the outfit she wants to wear any more. So, there’s so many different parts to it. Is it the right shoes, do we have her braces in, do we have the right hearing aids, she wears hearing aids now. Are they charged? Does she have the right hat and mittens. I know this is something that all parents do, but it’s different when you have a 12-year-old who thinks that she is 19 and full of so much personality and a joy of course. Getting ready in the morning and trying to get to work on time is always a little interesting when you are caring for a child with developmental disabilities who has her own plan. Every morning, I say a little prayer, hope for the best, and keep a smile.
Bud (caregiver): My name is Bud, I am a caregiver for my wife who has had MS for 22 years now. Up until the time we came to Concord to extended care situation where we are independent. My wife is now wheelchaired, I’ve been a caregiver for quite a number of years. It is a labor of love. I have a background in biology, so I kind of understand what is going, I ask questions, but I don’t get it all. Not everyone can be a caregiver, but those who can know it is a labor of love, it requires a lot of self-discipline, there are highs and lows, but is something that becomes what your life is supposed to be at that point, and it feels very good to be a caregiver, even on the tougher days. I feel fortunate that I am in a place I need to be where I can get assistance and if we need long term care, we’ll be able to get that. My hope is that we can go all the way through on our own. She’s been a real trouper. She was on her feet for most of 15 years, of the 22 years. She’s been a good sport, has a good attitude, but has with MS, many different things happen over time and make it more and more difficult for her. In the environment we’re in now, which is a long-term care situation, socially she’s been kept alive and feels like she has purpose, and that’s a good thing. We love each other and we can do this as long as we can.
Blanch (caregiver): My name is Blanch ____, and I was a caretaker for my husband Jim. One day we went shopping for a few items out at Market Basket, as I am going out the door I say, “wait a minute, I don’t think I have the keys”. I went to the car, no keys, now my son and daughter in law had gone up north New Hampshire and said, “can you take care of dad for the day by yourself?”, and I said, “everything will be fine”, but now I am locked out of my house. So, I was to go get a book at Gibsons and I had the gift card, so we went there and spent 3 hours in a bookstore. Then we went up north to Allans restaurant. We had lunch there and had ice cream for dessert. That was only 1 o’clock so what am I going to do for another 5 hours? So, we went and drove around up on Steel Hill in Sanborton and came back. Now we’re coming down and we came down to Concord, NH and we needed to get milk and bread. So, we stopped at Market Basket to get out milk and bread. Having driven my red car, that I owned at the time, we walked in and set Jim down in the area, and the clerks all knew him, and we got a cup of coffee. I walked around with this cup of coffee, walked over to my husband, handed it to him, and he said, in all seriousness, to me, “you know that lady in the red car that came in here? Tell her I’m ready to go home.”. And I was laughing, now the lady in the red car was his wife, me! And I looked at him and I said, “now I need 20 minutes to get bread and milk.”. Now this October day, we didn’t get milk earlier because I was afraid it would sour. So, I handed him his cup of coffee and I said to him, and I’m laughing the whole time during this, “Jim if I see the lady with the red car, I’ll tell her you’re ready to go home.”. Now, knowing the manager at the Market Basket, I turned around and there is Tom, over 6 foot tall, standing there. Now, my reaction when I turned around when I saw Tom was, “my husband didn’t recognize me.” And I burst into tears immediately, and I was laughing the whole time I was responding to my husband. Eventually, when we did arrive home, my son came with a key to open up my house. I really want to say that I learned, as a caregiver, to respond with favorable reactions to my husband. He was a relatively easy person to take care of and I am glad that I was able to take care of him until a few months before he passed.
Linda (caregiver): Hi, I'm Linda ____. I'm caregiver for my son, Ian. Received a periodic brain injury 14 years ago, from a gunshot wound to the head. They thought our told us the night that it occurred, he wouldn’t walk or talk, or he'd pretty much be a vegetable if he lived. Well, I'm here to tell you, 14 years later, he is alive and well. He walks. He was at Crotched Mountain for a year. And we were told at that time that after a year, you're pretty much where you're going to be. And I am here to tell you that is not true. he came home a year later in a manual wheelchair. Well, we've gone from a manual wheelchair to an electric wheelchair, which was a challenge learning to drive that thing for him. When we moved to our apartment, we had to have every door casing changed. The maintenance guys were so good about it, and, because, you know, in learning to do stuff, accidents happen. While he went from that to a walker, which he used for probably year, year and a half. and now he walks with cane, talks fluently all the time, just like before. And he's still playing his music. He plays the piano keyboard; he remembers and does the frets on his guitar. Because the practice he has some trouble with strumming, but anything can come in time. Support them, love them, let them know that whatever they think they can do and whatever they want to achieve, they really can. Because it takes it takes support, takes a lot of hard work and perseverance. And if you're willing to put the time in and do that, the sky is the limit. So that's my story.
Isadora (Caregiver): My name is Isadora and I've been a temporary caregiver for both my mom and my husband. I have a funny story about my husband, and my caregiving journey with him. My husband had an open-heart surgery last year. And if you know my husband, you know, he's kind of a control freak, and he likes everything to just be perfect and organize and to know everything in advance. And that's not the case when you have, a health emergency. Especially he needed a triple bypass. So, he had open heart surgery and when I went to see him after surgery, he had all of these tubes and wires everywhere. And there was a little black box in his lapel pocket that it was just had wires that were kind of attached to him all over the place. And at one point he just got so exasperated because he was, you know, powerless in the condition that he was in. He had to depend on the help of other people, and he was just driving me nuts to the point where I had to say, look, you and your black box, just go sit over there and wait for someone to come and help you, okay? You cannot be in control right now, you know? And, he started laughing, which of course sent him into fits of pain because he had just had open heart surgery. And, even though, you know, we both started laughing at that point and we still laugh about it sometimes I'll be on the couch, and I'll look over to him and he'll be chuckling and I'm like, what are you? What are you? What's so funny? And he looked at me and he'll say, the black box. And so, we have that kind of shared experience where, it was a situation that really was very serious. We were able to find some humor in that. And thankfully everything worked out and we can still laugh about it. Vanessa: September marks direct Support Professional Month, when the disability community brings awareness and celebrates those who dedicate their careers to the field of caregiving for people with support needs. Without direct support professionals and home providers, many disabled people would not be able to get out of bed, get dressed, feed themselves, or obtain basic necessities for survival. Others rely on support to engage in their communities, pursue employment and education, and navigate a complex health care system. For some, the support of a DSP enables them to spend time with family and friends in a meaningful way. The New Hampshire Council on Developmental Disabilities wants to reflect on the incredible impact that direct support professionals have on the lives of the people they support. Your commitment and dedication bring us closer to living out the promise that people with disabilities can live, work, play and dream in their community. It is because of you that disabled people can have authentic relationships with their families and friends. We thank you. Please help us spread awareness about the crucial position that DSPs and home providers hold in our state. Help us to advocate for appropriate training, pay, and benefits for this workforce so they can continue to provide the imperative support needed for ourselves and those we care about. Vanessa Blais
(VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 21: Disability Culture
In this episode Vanessa and Pat talk about disability culture and the contrast between shared history and experience and individual limitations.
Learn More:
Disability culture is something you are a part of — not something that is happening to you by John Loeppky
Frida Kahlo's work as disability art culture
Disability Pride on audiobook
Episode 21: Disability Culture
Episode 21: Disability Culture
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place? Hi everyone. Welcome to That's inclusive! I'm Vanessa Blais and I am here today with Pat. And we are going to be talking about why there seems to be little attention to disability culture and what disability culture means. And I want to start with, some comments that were made by a Canadian disabled artist and freelance writer and editor, John Loeppky. I hope that I'm saying his name right. And he states that disability culture is something that you're a part of, not something that is happening to you, and also that it makes us feel worthy of care and preservation. And he goes on to say that disability culture, to him, is moments of validation and connection that I will allow us to see our identities, not just in medical terms, not in terms of what society says we're lacking, but as a kinship built on shared lived experiences. Pat, why do you think that disability is considered less cultural than other things that differentiate people in their communities.
Pat: Because disability is primarily seen as a medical issue. So, you are lacking something because you have a medical or an illness or you can't move like other people can move. You can’t think like… you're given. You're given a diagnosis. Usually in order to get services, we have a diagnosis. You can't get services. So, it's medicalized for that reason. So, we see disability as an individual limitation rather than a shared experience. Which culture is a shared experience. People living in a culture they have art. They have they have clothing they wear, they have they have shared experiences with other cultures. But we see disability as you are lacking. You are lacking something that makes you fit in with everybody else. It's an individual issue rather than a group experience.
Vanessa: And so how do you think, you know, because in the past, you and I have discussed the, the role that parents or that relatives or very close family serves when you are establishing and perpetuating your cultural norms. And can you talk a little bit about why that's a little bit different for parents who have children who have a disability?
Pat: So, yeah, if of course if parents don't experience disability, which is extremely rare, they have no idea what it's like to have that disability. They probably have no connection to anyone else with a disability. Even growing up with a disability outside the disability community. It was I saw my own disability only in terms of limitations. Like, I didn't know any better for the disability. I was told certain things by doctors and professionals. That’s where you end up with internalized ableism. I didn't see myself as part of a larger community. And so, parents, much like in the LGBTQ community, if you grow up and your parents are straight, cisgendered people, your parents have no idea what it's like to experience not being that, being a minority in that way. So, the LGBTQ community has done a great has done a really good job of creating found families. So, adults in that community reach out to younger people in that community. And we have not. We really don't do that for the most part. And there are various reasons, right? There's the adult with disabilities sometimes just don't have the capacity. They don't have the support they need to be a resource for someone or, you know, you don't want to interfere with the way a parent is trying to raise their children. So, you want to be a resource. So, it can be it can be tricky, but one the other day someone was talking to us, and they were they were all excited. Jim has started his own consulting business, even though he's still figuring out what that what that looks like. And the someone came to him with the opportunity to, I guess, consult. They were planning on having an event in a town that’s pretty inaccessible here in New Hampshire. They want to raise money to buy a van. They wanted to have an event where people paid money to use assistive devices, like wheelchairs to get around the town. And the idea was then everyone would understand how inaccessible the town was. And Jim and I were like it sounds like you are suggesting a disability, you know, emulation. And I'm like, no we are not going do that. And we hope you won’t either. Because when you understand it about it as a the cultural than just an individual limitation, you understand, like using assistive devices when you don't need them. It’s cultural appropriation right. I would love to be able to, as soon as I said that, as soon I said like this, this thing in Hollywood. Well, in theater in general, when someone, when an abled actor plays the disabled character, they call it crip face. Intentionally bringing it there. It’s not okay. It’s more than just your limitations, it’s our culture. So, it's important for parents to understand just like parents who adopt kids from other countries learn about the nationality most tend to know who are doing that have made an effort to let their children experience that culture. So, as a parent, I mean, first of all understand disability culture. Look at the history. Understand why we are where we are today. And then try to find adults with disabilities who can and who are willing to, share their experience with your kid. There are YouTube videos. There’s also, I mean Crip Camp is a great example of disability history and disability culture. But even things like Frida Kahlo. I'm hoping I'm saying her name right. I didn't even realize until I was doing some research in the disability culture that she has spina bifida. And so, she is considered a cultural icon to people with disability because several of her paintings were around her disability. She painted her back brace in some of the self-portraits. So, things in the rich history and if we see it as culture, we're less inclined to get involved in pity, and we're less inclined to stick a bunch of people with disabilities in a picture holding signs saying I wanna go to Disney World. Please send me to Disney World. Like we see that as terrible instead of just being nice trying to send someone to Disney.
Vanessa: And it I think the idea of naming it as a culture you know, and I think that goes back to John Loeppky’s statement that it makes it worthy of care and preservation and those I feel like are really important words because if you are using that exact example of it, it takes away the pity element. It takes away the ableism element. Because if you replaced disability culture with any other kind of culture, would that be appropriate? Like would that be, you know, the way that we want to interact with people of multicultures.
Pat: Exactly. That's, you know, why we don't wear the clothing that’s specific to a culture that we're not a part of. And if we want to know what it’s like, if we want to understand that culture, we do something, really inventive and go ask the people rather than dressing up as them and pretending to be them.
Vanessa: Right? Right. Or, you know, we have opportunities especially we're recording this in June. It won't drop until July, but, you know, it's Pride Month now. And, you know, we have so many opportunities to be able to be a part of their celebrations. You know, if you are straight person, I'm a straight person, but, you know, I enjoy being welcomed, into being part of their celebrations and, and appreciating everything that Pride Month is and what it means to the people who experience that culture. But I don't pretend like I'm not straight in order to experience it right. Like, what I, what I do is I interact with people in that culture, and I learn through that. Pat And, you let them teach you. And that means also, when you see yourself as a member of a culture like you, you realize that what you do and what you say is representing that culture and you’re a little more relaxed, you a little more. You feel. You feel validated. You feel, I'll give you an example. For a long time, if I caught myself walking, I tend to hold my left hand at a weird angle sometimes when I'm maneuvering. And if I caught myself in the mirror doing that like, I would be kind of freaked out because I don't know that I'm doing it. And to me, it just looks, I would say, it looks weird using air quotes. And now when I catch myself doing it, I realize that my cultural identity that’s nothing to be and there's no more to be embarrassed by then someone who is Muslim and wearing a hijab. I mean, it's, it's, it's not embarrassing. It is actually kind of cool in a way, because it's signaling to other people, I'm a member of this specific culture. It's not a limitation. It's not weird. It's cultural identity. It is very freeing.
Vanessa: Yeah, that's interesting that I would, I would never have thought of that, but it is kind of the same as people who wear certain items of clothing or who, you know, when I think about like how certain, people walk, you know, like there's actually, like, cultural walks.
Pat: Yes. Yes.
Vanessa: Or how people talk or, you know, way just like movements that they make, are actually very cultural.
Pat: Well, my funny, I noticed this with, some, like, family members because I told you my father was born in England and so even though he immigrated here and even though all my cousins down the line, are pretty far removed from living in England, but there are certain words that everyone in my family uses and says that I always thought were weird. But then I realized that they were English sayings that we all got from my grandmother.
Vanessa: Yeah. And I think that when we worked together every day we discovered, because my Grandmother's from England and like we discovered some of the things that we would say and we would both be like, hey, you say that too! Yeah. You say it that way to!
Pat: We had the same we had some of the same meals growing up.
Vanessa: You know, talking about our favorite foods growing up.
Pat: They were English dishes. Yeah. So, I mean you see, you see the things about yourself that you might dislike. You see them as part of your culture. You see your wheelchair as part of your culture. You see needing, needing a cane as a cultural experience. You know when I see somebody with mild CP like me, I'm like, I see you, you know. People always think I'm deaf because the way I speak. And when someone who is familiar with CP and when someone has CP, they get right away it’s not deaf. It's not that often that the whole other than the whole of the culture.
Vanessa: So, it's but so speaking of like I'm glad you brought that up because there is like a, a, a momentum in the deaf community that they are very strongly attached to the idea of deaf culture. Yes. And I think that's so interesting how they've kind of like, parsed themselves out in a certain way where they've, like, separated from, from disability as a medical or an individual thing. And so why do you think that they kind of, like, went in that direction much quicker than other people in the disability community did?
Pat: Well, and I just I actually found out that they, the people who are Deaf don't consider themselves to be disabled. So, part of that I'm sure It has to do with that university. Right. Gallaudet has existed since this early 1800s. I am all for inclusion and to some extent their ability to come together and, and to create this really strong sense of community was about their ability to self-exclude. Right. To take themselves out of society and to connect with each other and create that and create this really strong centered identity. Again, I'm all for inclusion. But then I think people with disabilities should be included in everything. I think when people when groups of people with disabilities choose to choose to get together alone for a purpose, for the specific purpose of creating community and for a specific purpose of getting strength and going power for one another and identifying with one another. And it's different than having someone else come in and say you need to just be in this classroom or live in this space. So, as far as I can tell, I don't know a whole lot about the Deaf community, but Gallaudet University played a big part in creating a community that we see now.
Vanessa: If anyone in our community who is part of the Deaf community and would like to come on the podcast and talk more about that, we definitely welcome them to contact us. I'd love to have that conversation.
Pat: Yeah, I, I would love to hear, because I just found out a few days ago that, a lot of people within that community do not consider themselves disabled, and I don't know then how they view their relationship with the rest of the disability community especially since there are people who are deaf or experience other disabilities.
Vanessa: Right? Right. There's a lot of intersection of disability that could include, deafness or, you know, hard of hearing. Yeah, hopefully we can revisit that topic.
Pat: That'd be great to have someone who actually knows what they are talking about.
Vanessa: We invite anyone who knows a lot more than we do about topics. So I do want to touch on, the, I want to say lack of success that the disability community has in going into spaces that are being set aside for DEI, which is, diversity, equity and inclusion, which is primarily framed around, ethnicity and race and but, you know, we've been trying to go into these spaces and remind people that, diversity, equity, inclusion needs to include people with disabilities. And so, we have been I want to say when I say not successful, I want to say, you know, incrementally successful in being able to convince people that that needs to become a regular part of the conversation when they're having those conversations. So how do you think that the disability community needs to approach it to kind of like, be more successful in, in making that more of the mainstream? That there is that intersection of disability and other multicultural experience and that they should also be included in the DEI discussions.
Pat: There's a group that I’ve been following on social media called Disabled Divas and it’s a group and I'm not sure how big it is. It's African American woman who also have disabilities and I think groups like that are the key. Because they can speak several different languages. And so, when I go in as a white chick with a disability, I mean it's good, it's helpful. But do the message from someone who has experience with disability and marginalization on the basis of race. That's, that's going to be a more powerful message. And so, people with disabilities unfortunately, I've found here in New Hampshire that people with disabilities stay in their own spaces where they feel comfortable. And again, sometimes this is this is understandable when you don't have help to get out of bed or eat or get clean and dressed the way you want to. But the thought of going to a DEI event is overwhelming, but I think, I think it needs to come from both directions. So, someone who is listening to this, who has a DEI Organization or is working on DEI issue, you can also reach out to the disability community and make sure they feel like they're welcomed. Sometimes people need an invitation. Jim and I, there was actually an event coming up I think in Manchester and we just let the event organizers know that if you need someone to represent disability, we would be happy to talk to you about how you can make that happen, whether they're us or someone else. I think also when you think when we think of an individual with a disability, we think about disability community and disability culture. I think I've talked a lot about this with you, how I don't like the term self-advocates because it's about me. Let's go with what's going to get me to wherever I want to go. And it's not about advocacy. It's not advocating for the larger community. It's not about advocating together for something larger. We only see our own... again, I feel like the term self advocate has in some ways internalized ableism, where we don't see ourselves as capable of doing anything bigger than just advocating for ourselves and making it through another day. But if we look at ourselves as advocating, each one of us can advocate for the larger community. We'll do what we can. And again, I recognize some people. It can't get out of the house. I recognize there’s limitations. But even if you're stuck in your house, you can write an email. You can maybe make a phone call. You can least you can say, set your phone on a table and make a video message saying, you know, reaching out to the rest of the community and advocating for the community as a whole. Because most of the things you will benefit from personally, the entire community would benefit from. So, it's taken...I think about I think a story that Jim told me about Justin Dart. Justin Dart used the crappiest chair. Used his own nasty chair.
Vanessa: And it wasn't for lack of money.
Pat: He had plenty of money, but he did it because he, he wanted to be part of the community. He knew the most people in the community couldn't afford nice chairs. So, in order to be a leader in the in the community. He needed the experience, life like most of his peers. And for him to give up having a nice, powered chair to advocate effectively for the entire community and not just himself. I mean I think that the lesson to all of us.
Vanessa: Yeah. Yeah. I, I have a lot of respect for him. He, for people who don't know who Justin Dart is, he was integral to the passing of the ADA. He, traveled all over the country. I think he went to every state specifically. And met with people in the disability community, met with legislators and, and really was the driving force behind getting all of the votes for the passage of the ADA. And he was an incredibly wealthy man. So, he did, you know, he did try to not let his status, his economic status, being a barrier between him and the people who were living the experience of disability, the way that he was living his disability experience.
Pat: Like he used his money, he self-funded, most of that travel. Yup. so yeah, I mean, I just encourage, I recognize that it is easier for me than others, but like I'm not being paid to be here. Right. Right. sometimes we need to do things for the greater good of the community and the culture. And then when we see ourselves as part of a culture and we celebrate that, then we're much stronger than when than when we're just trying to advocate for ourselves.
Vanessa: Very true. Very true. So, to wrap up. I just want to let everybody know that Pat is a story collector, and she has a YouTube channel. And she also, attends conferences and she collects people who want to tell their stories. And sometimes we have to, like, strongarm people a little bit to get them to tell their stories. But we really think that it's an important thing, for people to do and also a way of building more and more of that disability culture, of being having an opportunity to share in those experiences. Yeah, with each other, even if you're not in the same room together. So, I just want to say thank you, Pat. It's always, always a pleasure to be doing the podcast with you.
Pat: A lot of fun.
Vanessa: And, and we'll be seeing you all soon.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 20: Interview with Jessica Goff from Seacoast Outright
In this episode Vanessa talks with Jessica Goff from Seacoast Outright about their intention to make the Portsmouth Pride event an intersectional and accessible space to celebrate who we are.
Learn More:
Seacoast Outright
Portsmouth Pride
Gather
Episode 20: Interview with Jessica Goff from Seacoast Outright
Episode 20: Interview with Jessica Goff from Seacoast Outright
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Vanessa: Hello and welcome to That's Inclusive. I'm Vanessa Blais and I am here with my guest Jessica Goff. Jessica has joined us from Seacoast Outright. She joined Seacoast Outright in 2021 as the University of New Hampshire Master of Social Work intern. After graduating with her MSW in 2022, she joined the Outright staff and now works for the organization as the Community Outreach and Education Coordinator. She's also on the board of 603 equality, a statewide organization with the goal of advancing LGBTQ plus justice in the Granite State. Jessica completed the New Hampshire Maine LEND Program, during which she engaged in leadership placement with the New Hampshire Council on Developmental Disabilities. She's worked within the nonprofit sector for the past six years, and has continually sought to create intersectional, safe spaces in her work with youth, unhoused folks, individuals with developmental disabilities, and the LGBTQ plus community. She's a lifelong New Hampshire resident and currently lives in Concord. Welcome, Jessica.
Jessica: Thank you so much for having me.
Vanessa: I know you gave us a thorough bio, which I was excited to remember that you were a part of our LEND trainee placement program. I had forgotten about that. But you reminded me that it was because it was during Covid, and I've had it blocked all of that out. So, tell me a little bit about yourself and how you became interested in LGBTQ+ and disability justice.
Jessica: Absolutely. Thanks so much for having me here today. I would say the way that I got started is the LGBTQ and the disability community are both communities that I'm connected to. I myself am a queer, neurodiverse person. And so, I think we often end up in spaces that reflect our own identities and advocacy that we want to do to create inclusive spaces for, ourselves and for others. And so, I really started around LGBT inclusion, in figuring out my own identity and then in leadership within our GSA in my undergraduate career. And then, my first, I would say, official job was as a para educator for the extended year program. I was then a direct support professional for a while, and really saw the intersection of the LGBT and the disability community and all of the other identities that we forget that folks hold. And I think so often, folks, I would say infantilizing the disability community. And so, there was this assumption that folks couldn't possibly be LGBT. And that's something that I ran up to, you know, really consistently, in the area agency I was working with where there was a sexual education program, and they didn't include LGBT identities. And when I asked, hey, could we add this, they said, well, no one here needs that.
Vanessa: Yeah. I mean, I had told you before that I worked in elementary education for a while, and in the upper elementary grades, they start sort of like a really basic, reproductive education program. And they were not inclusive of the kids who were in supported services at all. As a matter of fact, they pretty much just opted them out. And that's where I became aware of this idea that people thought that neurodivergent, divergent people, or even people with physical disabilities had no need to, you know, talk, or think about sexuality or anything like that. Yeah, it was a real wakeup call for me.
Jessica: It really is. And it's it's so interesting because I think the LGBT community in the disability community share a lot of parallels. And there is a lot of intersection. And, you know, for example, I think LGBT folks and folks of disabilities are more likely than other identities to not grow up in a household with someone else who has that identity. And so, folks often grow up feeling marginalized within the community, but also within their own homes. And I think there is so much intersection there, and especially around, I would say, the experience of masking or of, you know, trying to pass, right, as not LGBT or not having a disability because both communities are so stigmatized. And so, you know, myself, I am a low support needs neurodivergent person. And I walk through the world and people go, that's just a straight neurotypical person. Until there's a longer conversation. And so, there's also a lot of privilege in that. And I think I've really tried to utilize that privilege to be supportive, knowing that that level of privilege creates a sense of safety for me to do this work.
Vanessa: Right. Right. And with that said, tell me a little bit about how you got involved with Seacoast outright. Yeah. Tell me a little bit about seacoast outright, because I think a lot of people aren't fully aware of the work that is being done there.
Jessica: Absolutely. So, Seacoast Outright was started in 1993, so over 30 years ago now, which is wild to think about. but it grew out of a conference at UNH that had parents and community members who realized that LGBT youth in the area really needed a safe space to be able to connect with each other. And so, seacoast outright grew out of that with a mission to serve, support and advocate for LGBT youth. We were really started as Portsmouth based and have expanded to to really support across New Hampshire at this point. but we do a lot of things. We have direct youth groups for kiddos or teens as well, and elementary, middle, and high school, soon to be a young adult group. We also do, outreach and education. So I go into many schools, nonprofits, other groups, and provide, LGBT 101 trainings. So how do we use pronouns? How are we making sure that spaces are safe and inclusive? we support GSA's. We do caregiver support. we collaborate with area agencies, and we also run Portsmouth Pride, which is coming up. And I know we'll be talking about in a little bit. So, lots of things were for staff people. So, we're always running around a little bit.
Vanessa: I know how that is.
Jessica: But we have so many great volunteers and our feel very supported by the community. And so, have really grown based on that increased community need.
Vanessa: Yeah. You did a presentation for the council members a few years ago, and we really value to the, the space to be able to ask a lot of questions. because, you know, a lot of the council members don't necessarily connect with the intersectional space of LGBTQ and of disability. And, and a lot of the council members are parents who also don't really want to think about their kids in that way because they're not comfortable with it. So that was a really great opportunity for them to be in a place where they can ask questions and hear like that really basic 101 information that I think is intimidating sometimes out in the world, when you don't really know what to say or how to react or, you know, so I highly recommend to anyone who's looking for a really one on one training or even just an opportunity to talk about things that they reach out to you. Also, can you talk a little bit about what GSA is? You mentioned them a couple times. I think some people may not know what that is.
Jessica: Happy to. So, GSA stands for Gender and Sexuality Alliance. often, they exist in schools to create a safe space. So, it's a club just like chess club or, theater club or whatever. just a safe space, either after school, sometimes during lunch, where youth can get together and have that safe space. And it's really particularly important for a youth who don't have access to getting to programs like ours. Especially youth who might not be out at home and, you know, can't get to another location or, you know, youth who have transportation struggles. And so really basing things where youth are is really huge. And so, we've really tried to support schools in creating those GSA's and have big hopes for a GSA network, statewide at some point soon.
Vanessa: So and so that that includes, students who don't necessarily identify but want to be an ally.
Jessica: Yeah. And so generally, clubs are for LGBT students and also allies. I will say often, I know myself we had a very, very small GSA. I grew up in Nashua. So, a more populated area, I'll say. So, this is about 12 years ago at this point. So pretty progressive to have a GSA at that point. but I remember going and saying, you know, I'm an ally. I'm just a really good ally. And so, I think sometimes youth will go to these spaces calling themselves an ally, because that's a safe introduction. And so often clubs are really open as long as youth are, you know, welcome to create space for the LGBT youth to have that. and so, you said that there's not a overall link to all of the GSA is at the moment, and you're trying to create maybe like an umbrella for everyone to connect with.
Jessica: Yes. So, I yes. So, we, have supported a number of GSA is in, some on the ground support across the seacoast and have really realized that there is a huge need across the state, and we can't be on the ground in every place across the state. But it is doable to create a listserv and a monthly meeting and things like that, where we can provide a space for GSA advisors or those teachers or administrators running that GSA to be able to connect with others and get support around challenges and support around what activities they're running. Often folks who run GSA is get a lot of backlash, from community members. And so being able to have a space where folks feel supported and can discuss that is really important. as far as we've come, I will say there are still a number of challenges happening at the state level, in the local level around, creating LGBT spaces and a lot of pushback. So, trying to support the folks who are creating those spaces as well.
Vanessa: Yeah, I mean, that goes all the way up to the legislature. And it's it's like I feel like it's like a lot of things where something becomes more open and then there's like a pendulum swing the other way where people get scared, and they want to stop things from happening. So yeah, we a lot of, more than ever, I think right now we need to kind of be together and support each other and keep being optimistic and keep moving forward. Because sometimes it can feel very defeating.
Jessica: It definitely can. And, for folks who are interested, you know. 603 equality is a great resource to get information around what ledger, kind of things are happening in the legislature and what bills are coming up. there are a number of bills that will be on Sununu's desk in the next few weeks. In terms of being signed or not. So big movement there. So, I really encourage folks to to look that up.
Vanessa: Yeah. And if anybody has questions about any of those bills, they can contact the council because we follow all of that. Let's talk about pride. Yes. So, pride the idea of pride has got legs. It's really exploding around the state. And even some of the smaller communities are starting to create celebrations and, and expand celebrations. So, tell me a little bit about how seacoast outright involved itself in the Portsmouth Pride. Yes.
Jessica: So, most folks don't know, but Portsmouth Pride was the first pride in New Hampshire ever, to our knowledge. Vanessa I did not know that. Jessica And we are in our 10th year. And so, we were it's fascinating that only ten years ago we were the first pride. And now they're everywhere, which is really so wonderful. And so, I believe we're still one of the 2 or 3 biggest in the state. But really excited that communities are having their own. And it's, it's interesting because really, no one owns pride, right? It's such a community event that folks often don't realize that Seacoast Outright runs Portsmouth Pride, because it really has become its own idea. But it is our biggest fundraiser of the year, and so sponsorships and support around Portsmouth Pride actually helps fund our yearlong programs for youth, which is also exciting.
Vanessa: And what's exciting for us is that Seacoast Outright had reached out to us about how to make Pride more accessible. And from everything from making the parade accessible to the materials to having a space that's quiet because pride can get pretty raucous. Right? So, so we really appreciated that, you all were reaching out to us, and I wanted to talk a little bit about, why you chose to do that. Jessica Yes, that's a great question. And we so appreciate the resources that were provided. I think, again, often community does become siloed in the work that we're doing. And from this intersectional perspective, it's so critical to have accessible spaces. And so that LGBT spaces are accessible for the disability community. And, you know, disability pride spaces are accessible for the LGBT community and all the other identities, that swirl around. And so, we also know that, there is a disproportionate overlap between the LGBT and the disability community. And so, folks with disabilities are much more likely to be LGBT and vice versa, which is fascinating and a whole conversation for another day. but folks are more open minded, I think, and there is often a lot of diversity in both communities. And so really wanted to make sure that pride was a safe space for everyone and not just, you know, able bodied, you know, white queer folks, if you will. And so we really started a number of initiatives, and this started, I would say, in 2021, 2022, we really started this movement. And I think it was a combination of sociocultural factors that came out of 2020 and the murder of George Floyd. And really, folks, deeply recognizing the need for an intersectional lens. As well as, I think, organizational self-reflection and my own passion project. but we really were considering a number of different identities. And so, we, for example, around the BIPOC community, we shifted, what police presence looked like. And so really trying to focus on community led peacekeepers with police presence more minimized, recognizing, the socio-cultural moment. And so, for the disability community, we really wanted to reach out and do the same thing. And so, we started with, I believe, 2022. You all provided a wonderful grant to provide interpreters. And then we also really started making sure that we had, you know, wheelchair accessible porta potties and making sure we had that sensory safe space. And so, Jules, good from Neighborhood Access, was able to come and provide that at Pride as well. And have really grown in that since then.
Vanessa: Yeah. I mean, I feel like you're doing you're being very humble because I feel like you're doing a lot more than that. I want to say to the listeners that if you're putting on an event that, there's a lot to think about on how to make it more accessible for people with all kinds of disabilities. And it can be overwhelming for some. And I want to tell listeners that you all are the people that they should connect with because they're your ability to see every piece of the event and to be able to question, how are we going to make this accessible for as many people as possible, I think is unique right now in the state. So, you know, we we celebrate the work that you're doing in that, and we definitely think that other people would appreciate knowing that it's possible. It is. And I think a big part of it is, is being afraid of missing the mark. And, you know, one of the things that the council that we always want to impress upon people is we're on this journey together and no one is going to be perfect. You know about it and no one's expecting you to be perfect. and it kind of knowing that can liberate you and to be able to, to to take chances and to be able to think further about the, the small little things that you can tweak, to, to just make it more, accessible for people.
Jessica: Definitely. And I think, folks, the first thing they often think of is, well, it's wheelchair accessible and then that's where the conversation stops around physical disabilities, which is important. And also, that's not the whole picture. Right?
Vanessa: That's one of my pet peeves, is like, sometimes I wish that we could just blow up the ADA because it's a crutch for people.
Jessica: It is.
Vanessa: They need to understand that that's the floor. That's not the ceiling. And the ADA was also written 30 something years ago and the world has significantly changed. It has been, it has.
Jessica: And I think there's so much overlap with the LGBT community there, too, as we think about, you know, folks being so anxious to start and kind of being so anxious to make a mistake that it's kind of like you're so nervous that you don't do anything.
Vanessa: Right.
Jessica: You know, it's better to try and to miss the mark a bit than to not try it all. and I think that's why those educational spaces are so important and having resources is like the council that can provide support, is so critical.
Vanessa: Yeah. And understanding that there's the community out there that is there to support you. And in a, in a caring, compassionate way. so, finding that group of people is, is, you know, half the battle, I think. Yes. I just want to make sure that we also talk about when pride is because we're talking about it. And I'm going to be like, you announce all these. So, I've noticed that, and Manchester, the Queen City Pride is also expanding to. And there's a lot more, different events going on, and they're kind of like, events that are for family or for older, you know, older adults and for things like that. So let us know what is happening with Portsmouth Pride this this month.
Jessica: We have all sorts of events planned. and I'll say this list isn't all it's all kind of inclusive because there's just so many things and partner events. So really encourage folks to check out our website and our Pride schedule, which I can pitch in a moment. but yes. So, for the week of Pride, we have a 21 plus launch party Friday night. And that'll take place, on the Thomas Leighton through the Isles of Shoals. And then Saturday is our big pride day on June 22nd. And so, we start at 10 a.m. when we're doing a drag brunch in collaborate with Gather at the Music Hall. And so, Gather partners with the Music Hall every single year to do a fill the hall event to try to address hunger in the state. And so, we're collaborating with them to try to encourage folks to attend both events and to support all the organizations. And then we move into the rest of the day where we have our pride march that starts downtown and lands at Strawberry Bank, and then the event at Strawberry Bank runs 1 to 5. And so, we have performances, speeches, a pride marketplace that has 100 plus vendors. At this point, it's gotten quite large. we also have a youth zone, so an area for youth and families. We have a 21 plus throwback tent, community resources, all sorts of stuff happening that day. And then in the evening, we have an after party for LGBT youth ages 14 to 20, as well as some opportunities for adults to connect. So, a happy hour as well as, details TBD on an evening event as well. So, lots happening. The day of Pride and the week of Pride and the month of Pride. so, lots, lots to do and lots of different events that appeal to different age ranges and interests as well.
Vanessa: Yeah. I think people who if you have never been to Pride, you have to go to this one. It is so fun. It's, it's so wonderful to be around people who are celebrating. It's a very uplifting day and it's very family oriented. It is. I love seeing the kids running around, and there's a lot of great music and, and I think that, people who've never been to a Pride before should, should go to one event in their town and see what it's like because it's, it's just a really happy day. It's really is. Everyone's just in a great mood and, you know, when you're spending a lot of your time fighting for disability or LGBTQ justice, it's nice to just have a day that you're just not fighting. You're just celebrating and being together and enjoying people's talents.
Jessica: Exactly. And I think we always try to strike the balance between, you know, celebration and recognizing we have room to grow, but also, we need to have room for joy. and that is that is critical. And I think often are not often, but sometimes folks will, assume that folks in the LGBT community are just miserable all the time based on the statistics we have to share at the statehouse so that people don't take our rights away. But it creates a picture that is an accurate around what the LGBT community looks like. And so, the community is joyful and happy and self-expressive. And all of these wonderful things that it's so critical to have space to, to be in that joy. As we, as we are in the process of continual change.
Vanessa: Yeah. I mean, I think again, very similar to the disability community that they are also, they love to go out and have a great time just like everybody else. So, make your spaces accessible for them to do. Yes, yes, yes. so, I wanted to ask you what is what something going through the process of being involved in Seacoast Outright and being involved in Pride. What's something that's surprised you over the years of being involved in those things?
Jessica: That's a really good question. I would say just I don't know if it necessarily surprised me, but really reinforced that connection is so critical and really underpins just a human need to be connected and to be seen. And I think that's a big overlap in the LGBT, in the disability community. but really recognizing, you know, that when youth and adults feel safe and supported, you know, folks really do thrive. And safe spaces are so critical. And I think people sometimes feel powerless. But we aren't, and one person can really make a difference, not only on kind of larger scale change, but also in day-to-day interactions. And so, as I mentioned, I don't always like to, you know, harp on suicide rates because I think sometimes it gives people a false sense of what the community looks like. But we do know that LGBT youth are, you know, much more at risk because of discrimination faced. But when youth have one supportive adult, it decreases that rate by 40%. Well, one person who says, I see you and I believe you and I support you for who you are is so critical and so we can all be that person. And I think that can be really empowering to hear, because we can all shape this change and play a role.
Vanessa: Yeah, yeah, I hear you. I think in the work that I do, one of the things that I learned was that people really do want to connect with each other. People don't want to work on their passion project in a silo. And, over the years, you know, just having the opportunity to interact with different people and then suddenly they're like, hey, let's, let's get together, let's talk, let's see what we can do together. It's it's very, I don't know what the word I'm looking for. It's, it's empowering. I don't like to use that word a lot, but it's the first one that came to mind. Is like, it's very empowering. And not just like, as an individual, but like, recognizing that we all want to go to the same place, and we all need to kind of like, take care of our own space and make sure that those little things get done. But at the same time, we need to stay connected with each other. Because it's, it's a much bigger picture than just an individual person. So, I also want to you mentioned the DD council grants that we have. And those grants are available for anyone who is seeking to, bring accessibility to any of their projects or programs. And we have something called the Accessibility Grant. And you can apply for it, and you can get up to $500. And the different things that you can spend that money on are, American Sign Language interpreters or what we call CART services, which for those who don't know, that is when you have a screen and someone actually types, it's like watching in it live subtitles. Also, if you want to update your website and any materials, we will pay for auditing and also to help you, make those improvements that are, advised and we will pay for trainings and how to make your print and digital presence more accessible. For those of you who are familiar with me, know that I am a fanatic for plain language. but we also focus on e content and digital accessibility. And we also provide technical assistance to anyone who wants to make any of their information more accessible. And we can connect to you with consultants. We, we know everybody. So, if you're interested in those grants, go to our website or you can call me (603) 271-7040. And anyone who is engaging in a project or program that includes people with developmental disabilities, are, able to fill out this grant and give it to us, and we'll make our make do our best to make your project accessible. With that said, is there anything else that you want to tell us?
Jessica: That's a wonderful question. Ooh, I would say, we really value community input. And I think that's a big piece of this process is recognizing that we're not the experts in everything all the time. Right? Like we all have room to grow always, even if we're a member of the community that we're supporting. And so, we really value that feedback. And so definitely please reach out if there is an accessibility question that you have around Pride or our other supports and services. You know, we recognize that our location at Strawberry Bank is a field which creates some barriers. So, we do the best we can to offset that. But we are continually growing and so really, really encourage folks to reach out with any questions or thoughts. Especially around next year, we jump right into planning after Pride ends. So, if folks have feedback, definitely reach out.
Vanessa: Well, that's great. And if anyone wants to connect with you, they can reach out to us if they don't have a clear contact. and but I will be sure to make sure that your contacts in our show notes.
Jessica: Wonderful. Thanks so much for having me today.
Vanessa: Thank you so much for coming.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 19: Access to Science with SEE Science Center and Unchartered Tutoring
In this episode, Chase talks with Peter Gustafson and Shana Hawrylchak from the SEE Science Center and Amber Nicole Cannan from Unchartered Tutoring about the importance of inclusion and accessibility in scientific spaces.
Learn More:
SEE Science Center
Unchartered Tutoring
Episode 19: Access to Science with SEE Science Center and Unchartered Tutoring
Episode 19: Access to Science with SEE Science Center and Unchartered Tutoring
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Chase Eagleson: Hello and welcome to That's Inclusive podcast hosted by the New Hampshire Council Development to Disabilities. I am Chase Eagleson. I am the policy and planning coordinator for the New Hampshire Council Development. This is today. I am joined by:
Peter Gustafson: Hello, everyone. I'm Peter Gustafson, deputy director at the SEE Science Center in Manchester, New Hampshire.
Shana Hawrylchak: And I'm Shayna Hawrylchak, executive director at the SEE Science Center. Amber Nicole Canaan: I'm Amber Nicole Canaan, and I'm the CEO of uncharted Tutoring, and someone with a number of disabilities.
Chase Eagleson: It's great to have all three of you guys here. so today we're going to be talking about the importance of inclusion, accessibility in scientific spaces. And it's fantastic to have everyone here to do this because it's a topic that does not get talked about enough. So, let's just jump right into it. often in scientific space as well as pretty much every other field, we have conversations, programs, and initiatives that, circle around the idea of, diversity, equity, and inclusion, but often we seem to forget the accessibility aspect and disability aspect of, inclusion as well. how do you think we can work to include disability more in these DEI spaces?
Amber Nicole Canaan: My first thought on it is really the whole DEI thing needs to change to DEIAJ, and that needs to be just the standard conversation because, there are people have shared identities across multiple demographics, and the things that affect one person affect another.
Shana Hawrylchak; I think, we often find that people are so focused on permanent disability and really don't think about all of the sort of wide range of disabilities that occur throughout a person's lifetime. So, we might have, individuals that, are suffering from aging disabilities. and so many of us are going to encounter disability during lifetime that it really doesn't make sense not to have us as a part of the conversation all the time. This affects everyone. It doesn't affect a small population.
Peter Gustafson: And I do think that the conversation is getting broader to include, more and more individuals, across the spectrum of needs, and, and concerns. so, I'm the eternal optimist, so I feel like it's getting better. and kind of things like this will help facilitate that.
Chase Eagleson: I mean, having this conversation alone is showing that, things are changing for the better, hopefully. You know, going along with that previous question, all three of you are scientists in your own aspects. Why do you think inclusion is important in science?
Shana Hawrylchak: I'd love to take this one. So, I think, like a huge part of science, is innovation. And innovation comes when you have people coming from different perspectives and tackling a problem from a different angle. And that's where you really get a lot of those really creative solutions to problems. And if you have everyone exactly the same coming from the same backgrounds, you are just minimizing, the potential to come to a creative solution. So I think, you know, as we're looking about just all the many backgrounds of folks, especially folks with disabilities, I know I've had multiple situations in my career where I've had a problem on the table, and someone who had that different perspective was able to solve that problem in about an eighth of the time, as the rest of us, because they had a broader view of the challenge and other resources they could pull on. So, I do feel like particularly in a field that's all about innovation, you need different perspectives.
Amber Nicole Canaan: I think that's a great way of putting it. I also would say, you know, there's the whole concept of nothing for us without us. And, you know, when we conduct research that needs to happen to help people with disabilities in whatever way, whether it's testing a new device that will help someone get around, or medical products like, drugs, if people with disabilities aren't included in that conversation, a lot of abuses happen ultimately. And then, like you said, people with disabilities understand what their challenges are. They don't have to be told what they are.
Peter Gustafson: I agree, I agree. It's like, you know, a guitar player trying to invent a new kind of piano. So, it's not the right person to do the job. So, I, I agree that having the right people in the room, you kind of get a better solution.
Chase Eagleson: It does seem odd because science in itself is naturally meant to be inclusive. I mean, it encompasses everything. Kind of putting exclusion into it is making it inherently nonscientific, which is a kind of an odd thing that society's decided to do.
Amber Nicole Canaan: Well, we find that with science, a lot of the time it gets siloed in this weird way outside of other life practices, you know, from doing the dishes to gardening or, you know, putting on your clothes each morning. And if we take science out of the equation, things just don't work.
Chase Eagleson: Going along with that, you know, despite disability become an increasingly important part of the conversation in science and individual disciplines, becoming increasingly seen in scientific spaces. Oftentimes, the fiscal layout of labs or field sites and the design of instruments can render science literally inaccessible to some. And while the representation of disabled scientists has increased, some scientists will choose not to disclose the disability due to exclusionary practices and entrenched ableism in institutions. What are some ways you think that the scientific and STEM community can work to ensure that individuals living with disabilities feel both safe and welcome in scientific spaces? Kind of a big question, but.
Amber Nicole Canaan: I, I have a lot to say on this one.
Chase Eagleson: Go right ahead.
Amber Nicole Canaan: So, one of my disabilities is a form of narcolepsy called idiopathic hypersomnia. And I used to just short call its narcolepsy. but recently NPR did a great 15-minute bit on it. And now people know what it is. and I've been working I worked in pharmaceuticals at the start of my career clinical research, radio, pharmaceuticals, all that kind of thing. And ultimately, I came to a point where I could no longer grow my career because I needed to commute to Boston, and there's no way someone with a disability like mine who can fall asleep very easily when driving, could work in Boston. So, I think it comes down ultimately to infrastructure. I'd like to say that the labs are what need the work, but right now, people with disabilities at least like mine or like some of my friends, they can't even get to the places where they want to work, whether its sidewalks are blocked because cars are parking on them or, you know, in Manchester, I'm a highway commissioner explicitly for the purpose of advocating for good sidewalks and bike lanes. Oftentimes the sidewalks aren't plowed so people can't walk places, like me. and oftentimes people with disability devices are using the bike lanes in order to get around town, which is placing them very close to traffic. So, our overall, our infrastructure, things like trains, things like regular public transportation are integral to being able to put disabled people in the places they want to work.
Shana Hawrylchak: I think that there's also that, you know, issue of ableism where there's so many very small changes or, yeah, like things that we're creating barriers that just don't even need to be there. and I think, you know, one of the things that's positive coming out of the pandemic is we realized that there was a lot of just things we took for granted about work in the workplace, that we're starting to rethink. Like, do we actually need people to come into the office to do this job? you know, is it important that they come to this particular lab space, or could this be done in a different way? but there's all of these things that we sort of take for granted as being necessary that we need to rethink. Are they actually necessary to complete the job? And are there ways, you know, to make accommodations for a whole range of people?
Peter Gustafson: And speaking of, you know, scientific spaces, a hands-on museum, a scientific space, and we're working to become, more welcoming, to many different communities. you know, the way we build exhibits, if you're in a wheelchair, can you roll under them and use them, comfortably? Or can we build them so you can roll beside them and use them comfortably? So, it's all ways to get, accessibility for different people, with different needs. it could be putting Braille, right. You were to the museum or a school for the blind. You can speak to some of the challenges there. but it's trying to recognize where you can make some even small changes that will allow someone with an issue to participate in something scientific.
Amber Nicole Canaan: Yeah, I want to add to that, too, like the small changes, that becomes really important. For instance, I, I worked for an institution that had a dress code, even for the scientists in the lab. And it unfortunately required women to wear dress shoes. And I don't know if you've been. I mean, you don't have to have been a chemist. Just a person trying to stand and do anything. you know, dress shoe is very painful. and if we can sit down and look at what, you know, what systems have we put in place that maybe don't make sense? And why should a woman have to ask for accommodations to wear a sneaker in a lab space? These things just don't make sense to me. So rethinking things like dress codes or, you know, like requiring people to be in the office at a specific location at a certain time. you know, there are people with narcolepsy that if they could work early mornings, sleep half the day, and then work late evenings, goodness, the things they could accomplish. But that's not often, you know, accommodated. So, we're not allowed to contribute.
Shana Hawrylchak: Yeah. And I think like a consideration too, you're mentioning like narcolepsy by even like physically sitting in a chair at a desk is, a very taxing thing for a whole lot of people who could very efficiently work in a home space with their own seating, which is appropriate to their body. I would also say, like, you know, one thing we focus on a lot at the Science Center is the concept of universal design, because so many of the features which would make life easier for the disability community, would also make life easier for everyone else. Just thinking of going in and out of a lab and having doors that you can open to bring your lab equipment in and out will help anyone using a mobility device. So those changes, again, are just so important. Thinking about just, the number of people who can be helped if you, you stop just doing everything as it has been done in the past. I know something we also talk a bit about at the science Center is, just trying to think, like train of thought, like, you know, those small changes that Pete was mentioning. A lot of people, I think, have this notion that it's all about making things accessible for a wheelchair and just a broader definition of what disability is. So, people can think about some of those tiny things you can do if you can't necessarily make a huge change to your physical space, that will help a whole lot of people, engage with the science at a deeper level.
Chase Eagleson: I got, I gotta say, just on the note of the dress shoes, cause that kind of that threw me off a little bit, to be honest. I used to work in a lead that studied, emerald ash borers, which is a little pest. Amber Nicole Canaan: You're cool. They're cool, but they're.
Chase Eagleson: I hate them. They're more, But it. Before I start working. Working the council. I didn't even think about the accessibility aspect of being in that lab. And there's so many just weird, fine-tuned, fine movement, little machines that we had to use that. But honestly, probably would have been better if we if they had more accessible tools and levers and things like that, because I couldn't even do my hands are pretty good, I hope.
Shana Hawrylchak: I do feel like too, like a lot of lab spaces, are really moving towards certain aspects being automated because there is not a good reason for human beings to be doing some of that fine work where they can contaminate their specimens. So, you know, I think there are some engineering solutions that are coming down the line. I know automation is not always everyone's favorite term, but it can be really helpful in a lab space where you don't need somebody doing a lot of fine motor scale stuff. It is sometimes better done by that machine that can infuse the sample with biological contaminants.
Amber Nicole Canaan: Yeah. And along of what you said. Right. You were, I'm trying to remember the exact phrasing. You were talking about how, the changes that can be made for people with disabilities then end up helping a lot more people. or it might help someone recognize the fact that they might need assistance and hadn't noticed it before. Things like, you know, curb cuts, like we all think of for wheelchairs. Right? But they end up helping parents and strollers and people trying to exercise on rollerblades and, like, it ends up helping a larger portion of the community. of course, I'm so very infrastructure focused, but those there's changes in the lab, too, like you said, like automation or, better, bigger equipment. Right? Like levers instead of small turn dials, might even extend the, the working capability of someone who's developed rheumatoid arthritis or the natural aging process, like you're either disabled now or not yet disabled, if you're lucky. Right.
Shana Hawrylchak: Well, and if we think of those ahead of time, you might not get a work-related disability has been designed a lot of things that actually cause risk. But repetitive stress situations which create disabilities for individuals because of the way our workplaces are designed.
Amber Nicole Canaan: It's so true. Like you think about standing on hard floors and that back strain. And it's very true.
Peter Gustafson: I've been fortunate to take a few tours of manufacturing facilities lately, some exhibit research we've been doing, and, you know, today's manufacturing facilities, they seem like they are taking into consideration some of these issues for people. Some of the workstations we seem seeing have seen relatively comfortable and like, they're not going to disfigure people after 20 years of work. And so, I think some people are making changes because they have to. Right. Because we've learned a little bit about what we're doing to ourselves with some of these, work environments.
Chase Eagleson: I mean, that perfectly goes into our next question. thank you. what role, do you think that science can or does take in ensuring that all voices are heard in scientific discussions? We talked, a few minutes ago about how before, people with disabilities were, brought into these conversations, a lot of perspectives were just kind of left out. I mean, the same thing happened before women were brought in, before people of different ethnicities were brought into scientific spaces. So, I just love to hear all of your opinions on that. I could see already grabbing the mic go right for it.
Shana Hawrylchak: So, I think everybody, especially with AI conversations, data sets are so important and, you know, a lot of these data sets we're collecting, you know, involve everyone in the community getting in there and sharing their voices in the information and in order for us to make good decisions. And if those voices aren't heard, our data sets are bad. We get bad outcomes. so especially even more as we enter into an AI world. We need all of that data and input in there.
Amber Nicole Canaan: That's beautiful. I also, you know, I have a I don't have a 3D printer. It's in my two-year plan, but I don't have one right now. you have to take tools, you know, certain purchases, large ones at, you know, steps. but I, you know, I have benefited from people, 3D printing things that made my life easier. I like to think of 3D printers. Like, I remember I ran that event with the SEE Science Center years ago with the New Hampshire Creative Club, where we brought in all that 3D printing for that big holiday thing. And, to me, a 3D printer being accessible to a school child is really important because it's, that's the engineer’s sketchbook. Like, I'm an artist, right? I work in the sciences, but I'm artist. And that my sketchbook went everywhere with me. I do things, I do things, I change things. And to an engineer, that's what a 3D printer is. And anyone who's trying to solve a problem is an engineer, right? So, they need access to tools like 3D printers, in, in affordable ways or in school labs were in museums or makerspaces, all of that. I think that's one of the biggest areas for, including people with disabilities in science, and science, in disability.
Peter Gustafson: Well, I think it does come back to what she said earlier about having, you know, more and maybe more appropriate people in the room to help solve the problem you're trying to solve. and so, including, people with challenges, they're going to help you find solutions, if you include them. And I think that's the key is, making sure that that the, the right voices are heard.
Shana Hawrylchak: I would also say that especially in today's workforce climate, none of us can afford to exclude any population at all. So, it's, you know, we all need those perspectives, but we all just we need the people. we all need those minds coming in and helping us out in these challenges and being in our workforce. So just saying that a fifth of the population we're going to ignore is just not a viable option for anyone, not just in the scientific community, but in any community.
Amber Nicole Canaan: Oh, and I want to add on to that, that is because that is so true. Like I have, for, for instance, I've heard of workplaces that, didn't have any women in their group, so they use the women's bathroom as a storage room. So, like just as an example. So, there was an infrastructure for women to be in the workplace, right? So yeah, when women did come, they left very quickly. It was weird. so, you were designing the workplace for people with disabilities before they arrive is the only way they're going to get there. You're not going to find a car in the middle of the woods with no road leading to it. why do you expect to find a person with a disability in a in the middle of a city that's not, you know, built appropriately or in an office or a lab that doesn't already have these things in place. They're not going to come.
Shana Hawrylchak: I would also say that we talk a lot about the entire path. So, it's not just about the space, but it's how you frame how they're getting to you. So, the data, like, do you present yourself on your website or your other materials as being welcoming to these communities? Because no one's going to if they can't get to your door? They're not going to be in your building or be part of your workforce or be part of your community.
Amber Nicole Canaan: No, people with disabilities are fighting so much so already that they don't want to have to fight to have fun, like at the SEE Science Center.
Peter Gustafson: Well, and that's the point that if we're already in the C Science Center to welcome, people with mobility issues, for instance, but they can't get to the building. Right. there's a disconnect there. And bridging those disconnects is key. Important. Yeah.
Chase Eagleson: This is one of the few times I can shout out my economics degree. I just think it's really interesting that one aspect of this that a lot of people just don't talk about is how economically positive inclusion is. I mean, again, like you said, one fifth of the population, the CDC puts it at one fourth of the population. It's 25% of people that aren't working or have, limited access to working. I mean, that's a lot of that's a lot of money. That's a lot of money that can be made, can be spent. And that's a lot of stuff that that can be processed. I mean, it's, it's a whole huge portion of the population that's just it's like not tapping maple trees. So, it's bad.
Amber Nicole Canaan: That's probably the most New Hampshire idiom I think I've ever heard. I kind of love it.
Chase Eagleson: I’ve been in New Hampshire my whole life. It's just it's the maple syrup ingrained in my soul at this point. Amber Nicole Canaan: It's in your blood.
Chase Eagleson: It's in my blood. It's all thick.
Shana Hawrylchak: I want to add one thing on to what both you and Nicole were saying is that, you know, as businesses and in the scientific community, as we're advocating in our own spaces, the importance of advocating about the city itself and, just outside of our organizations, because anything that makes it difficult for people to, live in thrive is going to make it difficult for them to work or play in our spaces.
Amber Nicole Canaan: Yeah, I so I'm fortunate I'm not in a wheelchair today, but I did spend a year in one and had to relearn to walk, and I would roll on downtown of Manchester and try to spend my money, but I couldn't even open the doors to get into the businesses. and that's aside from the you know, ways I was treated by the persons who then didn't assume I had a business with employees and wanted to spend money. So, like things as little as having a doorbell, at your business, you know, when I can't open the door because I'm on wheels and in a narrow alcove, and then you can open the door and I can come spend my money.
Shana Hawrylchak: I remember I had this point in my life where I had, an ACL, MCL tear, and so I was on crutches and realized too late that I could not actually exit my apartment building after my caretaker left. so, I think we all take these things for granted. and then until we don’t, and we can’t. so, I do think that, again, just, you know, being able to think about the obstacles we are creating for no reason, is important. And stopping and taking that time.
Amber Nicole Canaan: 100%. What did you do?
Shana Hawrylchak: I called everyone I could go to try to get out of my, building.
Chase Eagleson: You dove out the window slides, and I. I know people hear this all the time, and it's going to keep getting said, but, I mean, with an ever-aging population, these obstacles are only going to become more apparent to the public, which in a way is a good thing. but it is something that needs to be addressed sooner rather than later, or no one's going to be able to spend money or do anything, anywhere, or get out of their apartment. We're just kind of a bunch of people trapped in their apartments. This, you know, this, topic about voices being heard and, more people having the need for accessible, infrastructure, brings into the next point of the fact that according to the National Academies of Science, engineering, and medicine, people with disabilities are underrepresented in, in STEM occupations compared at comparison with their share of the general U.S. population. STEM workers with disabilities earn less than those without as well. what in your opinions, can be done to combat these inequalities? Big question. Have fun.
Shana Hawrylchak: I think there's a lot of misinformation out there for employers. I think that they think there is going to be a larger burden on them than they’re actually is with making accommodations, and it really stops a lot of people from trying or recruiting, among the disability community.
Chase Eagleson: I think that’s a great point.
Amber Nicole Canaan: I, I agree with that. As someone who employs people, and I actually try to find people with disabilities to employ because, I'm putting them in front of a classroom of children who, let's say based on that data, a quarter of them will be disabled if they're not yet disabled. So, they need to see someone who's functioning, and aligned with their disability. And it's really not that hard. Like, for me, you know, they got to have a wheely cart. Maybe if they can't lift something or we stomp loudly on the stairs, so we don't shock their cataplexy, you know, it's not that hard. And most people with disabilities are trying their darndest not to be a burden. Maybe to their detriment.
Peter Gustafson: You know, combating, inequities. I mean, it takes advocacy, takes transparency. It takes people who care to speak up and say things and do things and, so those are the things that will continue to happen. As people want to see change, they have to be the change. They have to be willing to talk about it, do things about it. Hire, hire our way out of it. so, yeah, it's the, you know, the struggle for, for, people, they need to continue to, address it and speak about it so that it can be addressed, by, you know, people in the community who have the power to make change.
Shana Hawrylchak: I was going to say, I think it's also important, like as a society, you know, we've done a great job of like trying to get rid of some of the stigma around mental health. But there's also a lot of folks who, you know, there's hidden disabilities that people won't talk about. And so, people don't think about the accommodations or, helping people through some of the struggles they may have with those hidden disabilities because we are still in a society that, pressures people to hide. And I don't think that's a healthy place to be in if we really want, effective change.
Amber Nicole Canaan: I think that that's a really, really great point. And you can edit this out if you want. But I am very open with my disabilities, and I'm going to list them here so that if anyone who has them can see me and see that they can do what I feel like I'm doing really well. And so, I've got narcolepsy. I have a walking disability due to a tendon that turned to bone. dental neuralgia, along with, various neuralgias around my body so it could be in pain at any moment. an endometriosis. So, and the potential neuralgia is one of those things that makes it hard for people to sit for extended periods, or even sometimes at all, which, you know, so now I have a standing disability and a sitting disability. Anyways, I put that out there so that people can see that I'm a productive member of society. I seem to think so. but that, you know, you can reach out to me with questions through my website or anything like that. I'll connect you with any of the resources I have able. ABLE-NH is really, really great. And I know you guys just had on Sarah. So, kudos there. but being open about the disabilities means, it could put me at risk for future employment. so, I'm, I'm hanging my jacket on the hook that I'm going to be forever self-employed and try to employ those with disabilities. Just provide opportunity.
Shana Hawrylchak: Yeah. And I think you're mentioning it before, like for kids, we see it all the time. Representation is so important to encourage them to go into the fields. And while, you know, we're focused right here on STEM, I'm pretty sure there's underrepresentation in almost every work field. with, the disability population, unemployment is very high because of, again, some of the stigma and, misinformation that's out there. That keeps people out of the workforce.
Chase Eagleson: I will say that we won't be editing that out, and that's fine. I and I dare someone not to hire you based on that. That'll be a fun fight.
Amber Nicole Canaan: Fortunately, I'm not applying anywhere. I'm looking for people to hire.
Chase Eagleson: Even better.
Amber Nicole Canaan: The tables are turned.
Chase Eagleson: All right, well, thank you all for coming. Thank you for talking about this with us today. If you'd like to, reach out to, Amber or Shayna or, I, I almost just called you Gus.
Amber Nicole Canaan: I could see that.
Chase Eagleson: I'd love for you to say your contact information.
Amber Nicole Canaan: Oh, sure. My website, Unchartered dot org, is a really great way to get ahold of me. And actually, that form goes directly to my inbox. so, you will get me directly. That's probably the best way. I'm also on Facebook and Instagram. Sometimes TikTok. and you can find me in all those places. And then if you like my personal art where I do more on disability, that's bio site creative.com.
Peter Gustafson: The SEE Science Center is in Manchester, New Hampshire. S E E Science center. we're in the mills. We’re a hands-on science museum. we do summer camps, a lot of field trips, family memberships.
Amber Nicole Canaan: It's so cool. Peter Gustafson: It is a fun place to learn and have fun at the same time with your family.
Shana Hawrylchak: Yeah. And you can get a hold of either me or Pete. Shana. Shanna at SEE Hyphen Science Center. All one word.org or Pete, same, same rest of the email.
Chase Eagleson: Yeah, yeah. I got to say, even if you don't like science, for some reason, they have a really cool Lego set that I would recommend checking out.
Amber Nicole Canaan: It's true, it's true.
Chase Eagleson: All right. Well, thank you all for coming. And thank you for listening.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 18: DD Partners Introduce the Stop Special Campaign
The Directors of the DD Act Partnership, Isadora Rodriguez-Legendre, Stephanie Patrick, and Kelly Nye Lengerman discuss the launch of our Stop Special Campaign advocating for evolving the language we use when talking about disability.
Historically, the term “special” was used as a euphemism for disability. Over time it has embedded itself in policy, laws, and professional titles. Many in the disability community find this term offensive and “othering”. Join us in talking to our communities about leaving the word special behind when talking about disability.
Learn More:
Stop Special Campaign
StopSpecial.org
New Hampshire Council for Developmental Disabilities
Disability Rights Center of New Hampshire
Institute on Disability - University of New Hampshire
Episode 18: DD Partners Introduce the Stop Special Campaign
Episode 18: DD Partners Introduce the Stop Special Campaign
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Isadora Hi everyone, and welcome to that’s inclusive conversations with the New Hampshire Council on Developmental Disabilities. Today we're going to be talking with Stephanie Patrick from the Disability Rights Center in New Hampshire and Kelly Nye Lindemann from the Institute on Disability at U and H. And we're going to be talking about something called the Stop Special campaign. So first of all, I'm Isadora Rodriguez Legendre. I work at the New Hampshire Council on Developmental Disabilities, and I'd love to do some brief interactive introductions with you ladies.
Stephanie Great. Thank you so much for having me, Isadora. I'm so excited to be here. So, I'm Stephanie Patrick, the director of Disability Rights Center, New Hampshire, and we're New Hampshire's protection and advocacy agency. We provide legal advocacy for people with all kinds of disabilities across the state. And we're really excited to partner with you all for this special campaign.
Isadora Great, Kelly.
Kelly Hi, Isadore and Stephanie, this is Kelly. And again, I serve as the director of the Institute on Disability at the University of New Hampshire and the IOD. The Institute on Disability is New Hampshire's designated. You said our University Center for Excellence in developmental disabilities. And we work together with the DRC in the Council as the Developmental Disabilities Act partners here in New Hampshire. And our role is unique because as a university center, we are really charged with conducting research and evaluation, community service dissemination and outreach and training and technical assistance and sort of all things related to disability policy and services. And so, we've been in existence at UNH since 1987.
Isadora Wow. That's a long time. So together, our three DD partner network agencies work on a number of different collaboratives, work groups and projects. One of those projects is Stop Special. Would someone like to tell us a little bit about what that project is?
Kelly Yeah, I will start us off here. So, Stop Special is a campaign that audience members will be able to see very soon if they're not already looking at it already. And this was an initiative that came, out of the idea of as we listened to our constituents, as DD act partners, we heard more and more people with disabilities and family members and allies talking about how certain words were very disrespectful, very triggering, very outdated. And that term that we heard a lot and very consistently was the term special. And special is used as a euphemism a lot in our industry and in the work that we do. And as we really pause and sort of reflected, it was like this was a word that didn't feel respectful or representative or inclusive. And so, we came together with our colleagues, some community members and each other to say, how do we actually contribute to changing the conversation and helping educate people both about the word special and just advancing inclusive language?
Isadora Yeah. And we've talked a lot about how language is really important and how important it is for the community itself to determine what words, and terms are appropriate for describing them and themselves. And so, this seems to be a very grassroots driven, movement. Right? We're hoping a movement, to really, listen to what people have to say and use words that are not going to set them apart in some way or make them excluded in some way. Do you have anything to add Stephanie?
Stephanie Yeah, I think that's true. I mean, I think if we look back on the history of language, you know, it is always changing and shifting. So, language is not a static thing. The words that we're commonplace to be used when I was a kid are some of them we don't use anymore because people have clearly said, I don't want to use that. And I think, you know most clearly about the R word and the use of the R word and how that's really changed in our culture now. And people understand that that is not a term that people with disabilities want, that anyone wants to use to describe people with disabilities. And I think this is just a new opportunity to look critically at the languages we use now and listen to people with disabilities about what they want and need.
Isadora Great. So how do we hope to accomplish that?
Stephanie Well, we're going to start out by starting a campaign. And that's why I'm glad we're able to highlight it today. We have a website that hopefully will be out by the time the podcast comes out. And what's that?
Kelly. Kelly It's www.stopspecial.org.
Isadora That's amazing.
Stephanie Yeah. And so, we'll be asking people to actually pledge to stop using the word special whenever they can. We recognize I think that this is going to be a longterm long-term change. You know, disability rights. And in particular we recognize that special is used throughout the law. It's used to describe programs and systems and grants. And it's going to we're going to really have to think critically about when we use it and when we don't. But make a concerted, direct effort not to use it unless we have to, and to call it out and say, this is not what people with disabilities once we don't want to use special education, we don't want to use special needs. We want to we want to use other terms that are more that people with disabilities want.
Isadora Yeah, I think for me, I've definitely found myself getting and it's a habit. It's a practice. Right. Like anything else. just getting in the habit of instead of saying special education, saying something like educational supports and services for students with IEPs or students with disabilities. You know if it's if you're referring to people with disabilities don't use a euphemism. They know they have a disability, and they want the respect and the dignity for you to recognize that they may just need a little bit of support to be able to do the same things that you and I do.
Kelly I think I would add to that too, is a really central focus of this campaign, is also really educating people and creating space to have conversations because, as you both pointed out, so many of these words are embedded in everyday language of how we talk. They're in our laws, they're in our programmatic language. And so, it's really hard to extract. And so, part of having a campaign like this is just getting people to have these individual conversations, these group conversations organizationally, and for people to also feel empowered to say other people have been thinking that this word doesn't fit, doesn't represent me for a long time. And sort of giving, giving space to have both opportunity and voice to share of like there's a different way. And I think all of us agree that we don't have the perfect direct answer because there is not a one size fits all answer to this conversation, but that we as partners really want to take the opportunity to build conversation and community around the use of inclusive language.
Isadora Yeah, one of the things I really love most about this campaign is that we are kind of stepping back and elevating the voices of people with disabilities. And on the website, there are different videos where you can hear from people with lived experience about what the word special or being called special has meant for them and to them, and how they really find it disempowering in a lot of ways. And so that's one way that we really, we expect to hear from people with disabilities and have heard from people with disabilities about what this means to them. And it's not something we are doing for people because we think it's in their best interest. It's the community itself that's driving this.
Stephanie Yeah. And I think that's really important. And I would just put a plug in that if people are listening and they're interested and they want to talk about this, either they're a video, they're really short and pretty easy to record or through just a statement and a picture or either of those. We would welcome more of that because we really we want to be the way for people with disabilities to speak their own words, make their own communications in whatever way works for them about how they feel about this.
Kelly And I think the other piece that's both exciting at a local level here in the state of New Hampshire, but also even thinking broader is, you know, each one of us as partners has national associations and groups and colleagues that exist in every state and territory around the United States. Is that, well, this sort of birthed here in New Hampshire, are we? We were trying to create space to have these conversations and do this education and outreach that it isn't just about New Hampshire, like, this is actually bigger than all of us. I think first and foremost, these are the communities we care about most in our own state. But we really want this, and we believe this to resonate with so many other places because we have colleagues and partners and people with disabilities nationwide that have been sharing this. It's just sort of interesting that even at this day and age, there hasn't. We as a group have not found any other sort of collective action around this yet. And so, the fact that it's coming from New Hampshire and our community is, is exciting.
Isadora So, what else is important to know about this initiative? I would ask the group here.
Kelly I think one of the things that I think about a lot, and I think this is we've had conversations about this, we're going to have more conversations about this, is that this campaign is not about shaming people, making people feel bad, trying to rewrite history. We I think all of us recognize. And just as Stephanie mentioned, about the history of languages, that we're on this interesting continuum, you know, and that when we know better, we do better, and that there are still people and groups and organizations that are going to use and have special as part of their identity, it doesn't make them individually bad. Or, again, we this campaign is not about that sort of public shame or repudiation. It really is about educating and calm and having conversation. So, I think that's one thing that I would really want to convey to our colleagues and partners and community members is to say we're trying to facilitate conversations, to move our language and our inclusion forward.
Stephanie Yeah, I think that that's really that is very true and important. I think another thing that we're really looking for is for people to pledge not to pledge to be perfect, because I still say it and I catch myself and sometimes I don't even catch myself, but I still say it. But to pledge to be really thoughtful about using the word special and to try to make that difference and so there's also another thing on our website, will be an opportunity for individuals to pledge to make that difference and to help to spread the word about this to other places and organizations. And so, we're really looking for people, organizations, groups, advocates to come and join us and say, I am want to make this commitment to be able to make this change. And I'm willing to take that pledge and then to say, stay with us, with you as we send email alerts. And we have social media planned out as we try to make this happen over the course of the next five years, ten years, the R-word has been around for a long time. It was a long time before it really got to be part of the regular day vernacular, but it did. And we're I'm really excited and confident that we'll get there too.
Isadora Yeah, I love that. I think it's so important to recognize that change happens really slowly. Right. And that it's one person's experience. One person's story sometimes is that catalyst to really starting people talking about things and then taking action around something. And so, we are also interested in having other groups and organizations take action around this and really become part of that conversation and part of that what I would refer to as, that gentle nudge in the direction of listening to people with disabilities about what they want and what they want and see language that to be that's supportive and also that recognizes their value, their dignity, and their strengths.
Kelly And I think the tricky thing about that, and what I would add to that, is that just as we're on this sort of long historical trajectory about language, there's also this continuum about how people want or can use the campaign. You know, you use that you phrase that is a door, the gentle nudge. I think there are many of our colleagues, people with lived experience, our friends, our communities, they're like, no, we don't need a gentle nudge. We need a hard push to be like, this should change. You know, this is how I want to be referred to reference. This is this is the way I'm using words and language, and I want you to do the same. Yeah. and so I think it's sort of a booth and, and I think again, it's a the our, our community has is very diverse and broad, but our, our goal and our hope and kind of design of this is also not only meeting people where they're at, but then again creating some tools and opportunities so you can do the gentle nudge or you can do the hard like, hey, we're going this way now. And we recognize, I think there's going to be lots of different people's group groups and communities that are going to be in different places, but it's kind of designed in a way of like wherever you're at right now, we'll meet you there.
Isadora Yeah. And I definitely think that in in my experience, certainly there have been individuals that that don't see an issue with that word. And it's important to recognize that for those individuals that maybe this movement doesn't resonate. I think it, it would be important to say to those folks that there are people for whom this word really, is disempowering and really, kind of works to continue segregation and social isolation in a way that not everyone with a disability is going to experience. Right. And so, a lot of the folks that, we work with have intellectual or developmental disabilities and, and they have seen how this word is used, like, almost like a good buddy or, way to go, champ. Right? And, and really kind of to belittle and, infantilized people with disabilities in a way that we know today is not appropriate because adults are adults, and they are capable of making their own choices and living their own life and following their own dreams and goals. They just need the supports to be able to do that.
Stephanie But everybody needs a set of supports. That's the thing. It's not like I didn't need those supports when I turned 18 and I had no idea how to, you know, wash my clothes or like, keep change the oil in my car or even where to go to have someone do that. Like everyone needs supports in different parts of their lives and making people with disabilities feel different because of that is not helpful to them or to anyone.
Kelly I think the other thing too, that I think about as we're having this conversation here too, is that sometimes with things that we want to see changed, whether it's about policy or practices or experiences, is that one of the things we have the most control over is the words that we use. and yet it can be one of the most powerful things, because the words that we use, impact of how we think, the impact how we feel, they impact our decisions, they impact the other people around us. And so again, it I hope we hope that people also walk away from this feeling empowered in the sense of that we this is something we can do something about at a very individual level, and that we can do something about it at broader levels too. But it often starts with who we are and how we use language as people.
Stephanie You know, the other thing that I think has been interesting is that some people haven't really had an opportunity to think about this, as we've been talking about this with some advocates to say, what do you think? Do you want to be a part of this? Do you want to help us with our videos and testimonials? I think that some I've heard from some people I don't I don't know really. And that's okay too, right? This is an opportunity for you to think about it and decide what you think. And if you want to support something like this or you don't, it's those are all okay. Choices are fine choices for anyone to make. but we do want to encourage people to be thinking about it. Isadora Yeah, that's a great point that there's not really, one size fits all or a right answer. Get on board or get off the train. We're really interested in just moving the conversation along and having people think about something that maybe they haven't really had an opportunity, to do before and figure out what works for them.
Kelly I think a little bit about, you know, we were talking earlier about how deeply the word special is embedded in our in the work that we do in the communities that we, we operate in. I also think about the use of the term as an identity for groups of professionals. So, when we think about again, I'm going to use the term special educators. They, they have worked in a career in an industry, you know, dedicated and focused on improving the life and the quality of educational services for students with disabilities like that is very professional, honorable, noble, and an essential ingredient in community and society. And so, I think two this challenges the way that we think about that. And as I was talking about earlier of not wanting to, you know, create divisiveness, bias or cancel culture or things like that, but recognizing that there are groups of professionals that have that also embedded in our title. But this conversation is for them to and again, a handful of the folks that we've continued to kind of talk and, and, and shop these ideas with also say that they as an industry and as, as educators, as educators, you know, are thinking about these things too. I think that'll be an interesting thing to watch as that also sort of moves forward in the next three, five, ten, 15 years. Because even if we think about the kind of journey with the R word, the last thing to change was the federal legislation with Rosa's law. You know, we had made decisions as individuals, community and society well before, you know, the federal government and legislation, you know, caught up to that. And so we I do I think many of us do hope that a similar trajectory will happen with the use of this word, too, recognizing that it's a long game, it's deeply embedded, but that there are things that we can do as individual members, professionals, you know, to again, think critically about how that is representative of us today or no longer representative of us today.
Isadora Yeah, sometimes. Sometimes it's those professionals, right. That can be the strongest allies to in helping move legislation and policy. And, you know, when I think about educational policy, or even civil rights policy that uses euphemism names or words that are intentionally portraying people as different, less than needing help or support, to be able to essentially justify services or funding or things like that. It really does sometimes become those folks who are most in, in those leadership roles, in those decision-making positions that are able to be the catalyst, be the impact on that change. And so hopefully we can we can get some people to really understand, how, you know, the Stop Special campaign really aligns with, the vision of the world we want to see.
Stephanie Right? I mean, I think it's important to that changing how you describe yourself, if you're a special educator or a special needs parent, doesn't mean that you're not valuable or that your contributions are not important and you're not doing really good work, it doesn't mean to undermine that at all. I think sometimes when people think about how they how they describe themselves, it's hard to think about changing that because it's been part of a narrative for a very long time. But it doesn't. I just want people to recognize that. It doesn't mean that your work isn't good, that your thing isn't invaluable, or that you were making bad choices before. This means that now we've learned some lessons about how we're going to do things moving forward, and we hope that people will be able to join us, to be able to really say, I've done this for a long time. I recognize that this is not what I want the future to be for my for myself or my profession, for the people that I'm working with.
Isadora Yeah. And then take action, right? Either sign the sign, the pledge or, you know, talk to other people in your fields or in your family or in your community about, this topic and, and just have those conversations and, you know, encourage people to tell their stories. We talk about how advocacy is really the harnessing of people's stories to be able to impact change and be and be, influencing how people see things that don't personally impact their lives.
Kelly And I think one of the great things kind of, again, circle coming full circle to, to our different roles as part of the network that is really kind of at the heart of what we try to do is, is blend education, advocacy together for the most powerful, impactful messages that sometimes stories are the most important and most important. Sometimes education or data is the most important. But when you can find a topic, an issue where you really can pull those things together, that can that can lead to some of the greatest change. And again, I think we're talking a lot here about the hope of sort of what comes next with this campaign. And I think it I think it really remains to be seen, because part of this is sort of reflecting back to the communities that we're a part of to say, where's it going to go next? Like we've used some of our expertise and resources to create a sort of a framework based on the lived experience feedback that we've received. But where it goes next is, is kind of up to all of the rest of us.
Isadora Right. And kind of putting it back in the hands of the people the most impacted. Right. And those voices, those disability voices that have something to say about this.
Stephanie So maybe we want to remind people of the website
Kelly Because that's the where we people should go read stopspecial.org. That's where you can go and read some stories, get a little bit more background, take the pledge. There's some additional language resources on there as well. and again, we hope to continue to build out the website, some social media presence. and we really want to also welcome and encourage other people to applied in the ways that's most meaningful to them. So again, yes, we created in New Hampshire. Yes, we're the DD act partners, but it doesn't preclude anybody from another state, another community, another organization, another person someplace else in the country or the world that says this. I want to carry this message forward. I want to put this on my media. I want to embed this in my newsletter, tell my story. That's what we want to happen is to sort of say, yes, take it into the universe and make it have impact in meaning for you.
Isadora Yeah. That's great. So, thank you, ladies for coming. talk to talking with us on our podcast. we hope you check out the website and, keep listening.
Stephanie Do you want to, like, spell out the website, you know, for accessibility? You might want to like insert that in somewhere. Yeah. Yeah. So, it's stop special.org.
Kelly S t o p s p e c i a l.org.
Isadora Great. Thank you. And that'll be available in the transcript as well. So, check it out and thanks for joining us today.
Kelly Thanks so much. This was enjoyable.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Autism Awareness Month Bonus Episode: Being an Autistic Writer in Hollywood with Paul Philben
This episode contains adult language. Please be advised.
In this bonus episode, Blake interviews Paul Philben, from MidKidd Productions and Netflix, about what it is like to be an autistic writer in Hollywood.
Autism Awareness Month Bonus Episode: Being an Autistic Writer in Hollywood with Paul Philben
Autism Awareness Month Bonus Episode: Being an Autistic Writer in Hollywood with Paul Philben
Transcript of video:
B =Blake
P =Paul
B- “Cool, alright. We’re recording, and like I just told my buddy Paul, who by the way I’ve known for like 20 years, to all my fans listening at home. I don’t know how any one human other than my parents and my siblings has been able to put up with me for so long, but Paul and I have known each other so we were two little rugrats running around our families respective lake cabins, uhh in New Hampshire. And have stayed friends ever since. Uhh so I am Blake, the Social Media Assistant with the NH Council on Developmental Disabilities, for those of you who have not had the displeasure of getting to meet me yet, mostly kidding there. And uhh Paul you wanna go ahead and introduce yourself real quick?”
P- “Uhh yeah I’m Paul Philben, known on a lot of social media as P.T. Philben, I uhm am currently a writer’s PA or support staff on a writers room for The Night Agent, which dropped last month (on Netflix) as of recording this. Uhh to a lot of success! I was diagnosed with Autism I believe at around age 4 or 5. At some point my diagnosis was re-evaluated to Aspergers, which is how I knew it growing up. I guess some people don’t like that word anymore. But it’s the word I knew so that’s how I identify, as Aspy. And uhh yeah I’m excited to be here and to hopefully offer some insight.”
B- “Cool cool, thank you! And by the way guys if you have not watched The Night Agent, uhm, having just finished it myself the other day, very entertaining. I would say it's very akin to the show 24, I don’t know if you agree with that Paul?”
P- “Yeah, yeah that’s a good comp” (comparison)
B- “Yeah that was my analogy I guess, so if you liked that show you’ll probably like The Night Agent. But also just seeing Paul’s name in the credits of the premier episode, was pretty wild for me, because growing up like I said we’ve known each other for quite awhile and we always joked and talked about him getting to Hollywood and this but until it's something that happens it's all very theoretical, like most things in life. Uhh and then it happens and you see it on screen and you’re like “oh shoot, I know that guy! That’s pretty cool” So that was a wild moment for me.”
P- “Yeah, yeah it was funny because I looked for my credit and I couldn’t find it and just assumed it wasn’t there but you found it (laughs) so that was so funny.”
B- “It took meticulous pausing and playing of the button because Netflix is very aggressive with their speed in the credits once you get through the producers and the cast etc”
P- “Which is weird because most people don’t watch the credits, you’d think they would just play the credits at a normal speed, since they skip it usually anyway.”
B- “One would think. They actually have you start the next episode automatically unless you click the watch credits option”
P- “Yeah exactly”
B- “Really interesting, but I was like I have a hunch I might see him in here so I was like, eh spend a minute of my time and see” P- “Yeah I think it came after the logos, which is why I missed it. Uhm but yeah.”
B- “But yeah that was interesting and you know guys I took a picture of it and sent it to Paul and his family and circulated it amongst people we know and was like “oh my god”
P- “Yeah people freaked out on Facebook which I hadn’t been on in like years and uhh except for like one hidden Hollywood Assistant group. So I had to respond to people on Facebook for the first time in like years, so that was a wild experience. Uhm”
B- “Probably a lot of notifications backended, waiting for you (laughs). Uhh”
P- “Oh yeah, oh yeah” (laughs)
B- “As most of the folks who are watching this video are aware, April, which has a few days left in it, so I’m not late getting this project done, I still get my stuff done amazingly, uhh is Autism Awareness Month, Autism Acceptance Month, you know for folks. And wanted to talk to Paul, because he and I were long overdue for a chat anyways and we’re cooking up a visit in person, to LA which would be pretty cool, uhh been once and did all the tourist trap stuff so really excited to do proper LA this time. Uhh but we wanted to chat with Paul because he works for Netflix which is just really cool, uhh I don’t know many people personally that work for Netflix, so that was nice. And yeah just to get his perspective on things you see in the industry, experience breaking into the industry, as someone with Autism, and ummm yeah some of that. So Paul I’ll let you lead off by kind of my first question so like what’s the vibes been for someone you know with Autism, Asperger’s, in the film/tv industry?”
P- “Well I’ve been pretty lucky with most of my interactions. There’s a lot of anxiety going into an industry like this that’s driven so much by social connection. And uhh having, having certain issues with like perceiving tone, or like not knowing the implications of what you say before you say it. I also have problems with like volume and like uhh can I swear?”
B- “Yeah I think most of the people watching this are adults”
P- “ Yeah so like my other issue being my default expression being like “[expletive] you”, my uhh default tone of voice being not particularly conciliatory, I have a loud booming voice that I have trouble keeping in check sometimes. So there’s always this anxiety that I’m like [expletive]-ing something up or tripping up some social interaction. And of course people are too polite to tell you. I always try to tell people upfront like if I do something to offend you just let me know. Uhh there hasn’t been that much of an issue with this room in particular. But uhm naturally like I have, my first job out here was editing on Keeping Up With The Kardashians, not what I wanted to do but it was a fine first gig to have and there were some funny stories. But there was a point where my supervisor had to pull me aside and like my, there was an assistant story editor and my colleague who was also an assistant story editor, there were two on every team, had apparently gone to my supervisor and said that I sounded like very angry, like commanding. And what I thought were making simple requests, I don’t blame her, like I was glad that she just took me aside and checked in with me. Uhh after that, after I left that job uhh I had a stint where I was doing odd jobs like Uber and stuff, and then the pandemic and the first like nearly year of that was just hell of like not being able to get any work and not being able to access unemployment because it was such an overloaded disaster. But uhm at some point during the pandemic, like I think it was already 2021 at this point, I get a notification from an organization called, uhm damn I can’t remember what they are called, if I remember what they are called I’ll say, but they were like a placement agency that specializes in people on the spectrum, and they were just starting to implement their work into like Hollywood jobs. They were like used to doing it with just like office work. But they were starting to do it with Hollywood jobs. And I get an email from them saying like this one show wants like Autistic PA’s (Production Assistant) in particular and uhh thank god I answered that email because it led me to where I am. And it turns out it was for a Jason Katims show, Jason Katims is the creator of shows like Friday Night Lights and Parenthood.”
B- “Yeah I recognized that name, I loved Parenthood!”P- “Yeah and having watched Parenthood you know that there’s an Autistic character on that show, Max. Who is very heavily based on Katims’ son. Uhh this is all public. But this new show he was developing, or getting ready to shoot, was about three Autistic roommates, called As We See It. The Autistic roommates were played by actual Autistic people. He had Autistic people on the writing staff. He had a very big hearted investment in inclusion in this show. Uhm so I end up working for the show as like a Covid PA, just like handing people their proximity badges or whatever. So that if anybody gets sick we know who's sick and who's not, who was exposed to who, etc. Anyway, uhm at some point during the show I was given access to the pilot which had been shot before the pandemic. And I had a pretty strong reaction to it and I ended up telling this woman who was on the crew, like I got to basically meet everyone who was on the crew because everyone came for Covid tests every day. And I didn’t know who she was at the time. But uhm I just tell her that I had this strong reaction to the pilot, specifically this scene where uhm where the main characters father sits him down for dinner and says like you need to go ask for your job back because he basically did the Aspy thing and told his boss you’re an idiot without like being at all self aware. And he says like no I don’t want that job, well do you want me to support you for the rest of your life? And he’s like yeah kind of. And he says like well I can’t I have cancer, and before I go I need to know you’ll be okay. I need to know you’ll be able to hold down a job. That you’ll be able to get a girl, that you’ll be happy when I’m gone. And that really, it made me think of my own father. Not in that we ever had a conversation that stark, because as you know he’s alive, well, healthy.”
B- “Yeah, also named Paul! For the folks at home” (laughs)
P- (Laughs) “Yeah PT stands for Paul the Third, and my father’s name is also Paul. But anyway, so I had a strong reaction to that because it made me think of all the things my dad did and all the concern he showed when I was young. Like trying to get me to pursue girls, like doing this (motions with his fingers at his eyes in a “look me in the eyes manner”) to teach me proper eye contact, and uhm I had that reaction so I tell this woman Elaine, not knowing who she was. She asked me to write it down in a letter format just to show it to people, to like affirm that people in my situation could have a positive reaction to the show. What I didn’t realize at the time was that she was one of the most important consultants on the show, because she’s like a relatively well known acting coach as well as an Autism inclusion advocate because her son is on the spectrum. And the people she shared it with included the Producers of the show. So I ended up having conversations with mainly Jenny Mullen, who was Jason Katims’ Head of Development at the time. And a brief conversation with Jason Katims, and I formed that connection just through being lucky enough to express myself to the right person. Like it was an astronomical chance. And it was through Jenny that I ended up getting a Writer’s PA position on this show, The Night Agent. I mean coincidentally during the interview, I told Shawn this whole story, my current boss Shawn Ryan, this whole story, and it turned out he knew people on the Autism spectrum as well. And it was just an astronomical concurrence of events that uhm people talk all the time that in this industry how no one’s story of how they make it into a place is replicable. Like one person’s story is only one person’s story. There’s no like one select path. Just to like clarify something, getting support staff job on a writer’s room is basically impossible. Like they don’t post these jobs publicly. Everybody’s fricking wants them. The fact that I was lucky enough to have this opportunity because Jenny knew someone who worked on the show who knew that they needed a PA, it’s astronomical good luck. I think I earned my place here but it was also extremely lucky. So in the past few years I’d say I’ve had just this string of, both working under Katims, as a member of his shooting crew, and working directly with Shawn Ryan, two legendary writers, who are both men who I can’t speak highly enough, they both have hearts of gold. And they both have a connection with the community. I am extremely fortunate that I have ended up in really good environments. You hear stories of some of like the worst people in Hollywood. Like there are certain writers rooms that are really toxic. That uhh don’t treat assistants well. Uhm I feel very fortunate to be where I am. I guess whenever I tell people this story, because like people naturally want to know how you get into a writer’s room. And like start with an Autism diagnosis I don’t know.”
B- (Huge laugh)
P- “I basically say that you just wanna be honest with people. And like speak your truth. Okay like Integrate was the organization that helped me get that first job. I asked a woman who worked there, whose daughter was on the spectrum, uhm how honest I should be about my Autism diagnosis. Like when I would apply for jobs early, never got a job through a job application by the way, it’s always been, it’s always been meeting someone.”
B- “Good old networking” P- “Yeah, yeah all networking. But I always struggled like, should I identify myself as a disabled person? Would they want to bother with me? And what she said was “if someone is going to not hire you because of your Autism diagnosis, it means you probably don’t want to work with them anyway. It’s precisely because I talked about who I was, what As We See It, which fortunately did get renewed, what that show meant to me, what that meant to my family. I have a ton of funny anecdotes about that show if we have time for it. It’s because I was upfront about who I am, how that’s affected me as a writer, that I’m here. I would not have gotten here if not for my Autism, in a weird way.So, like it’s astronomical luck as well but I’ve been very fortunate that this aspect of myself that’s obviously very core to who I am, is a big part of the reason that I’m here and hopefully, around the corner, looking at getting a script on one of Shawn’s shows.”
B- “Ohhh looking forward to it and definitely watching that. And I always joked guys with Paul, I think I would make a great extra on a show. It would depend on the show but I would be a fantastic extra. And as you heard it’s all networking, so now I have the network in place. But something you said really piqued my interest, and made me throw out one of my questions and bring in an organic question that came to mind. Was your reaction to As We See It was the show? Uhm to As We See It, I think my question is based on that. When you watch projects that feature people with Aspberger’s, do you find they are mostly genuine? Do you find it’s like a generalization of people on the spectrum? What’s the overall vibes of that? If there is any, maybe it’s very individualistic, and it’s not a one size fits all reaction. In general I guess the question is do you think Hollywood mostly “gets it right” (does the air quote with hands/fingers)? As I’m doing this with the air quotes since it could be based on individual taste.”
P- “Yeah so that’s kind of a complicated question. As We See It put more effort toward “getting it right” (does air quotes) than most shows. Like I said they cast people who were on the spectrum and playing characters with very similar levels of need. Which was really good. And they even hired Autistic actors to play non-Autistic characters, just for the hell of it. And not that there weren’t issues with the show but the fact, the stuff they got right, they got really right. Like one little anecdote I remember was my sister watching the show with her boyfriend, now fiancee, who is also named Paul.”
B- “Yeah also Paul, we’re bringing in another Paul, all the Pauls.” (laughs)
P- (Laughs) “Yeah, uhh so she reacted to the main character basically saying something rude, I can’t remember what scene it was. It might’ve been when he’s playing cards with a bunch of old ladies and they say “oh you’re really good at this game” and he basically says “no you’re just terrible at it”. And she said that reminded her of me and her fiancee was like “what are you talking about PT is nothing like this” and she was like, she paused it and explained to him like “this is him to a T when he was Eight”
B- “100 percent” (laughs)
P- “He’s come so far” or whatever and she told this whole anecdote about how one time she asked me how I was doing and I said fine and uhm she asked “do you want to know how I’m doing?” and I said no. Which is like the most Autistic thing, I have no memory of this, wouldn’t do that now, but yeah my symptoms used to be a lot moreobvious, like uhh one thing I do kind of want to see is like, I’m probably going to go through a laundry list here. But one thing I want to see is the experience of someone who passes, quote on quote, because that’s a whole different struggle. Like the way I’ve explained it to people is, so I prefer the term high need vs low need instead of high functioning and low functioning because high functioning to most people has meant “oh you pass for normal enough so I can ignore your needs and not feel bad about it”, like ableist. Like I have needs, I just don’t have as many needs as some other people on the spectrum.”
B- “Sure”
P- “So like it’s a daily struggle with the fact that like I know anytime that I can make some sort of mistake that I’m not even aware of. That will throw people off a lot. Because they’ll, you know they won’t necessarily know that I’m on the spectrum. It’s a lot more comforting, like I have a couple friends out here who know, and are cool with it, and we have a rapport that makes sense to everyone involved. But I don’t necessarily have time to do that with every co-worker. I don’t have time to establish that rapport with every person I meet at a networking event. And that’s a struggle. I would like to see more of that. In terms of how the representation works now, Hollywood has a real fascination with the archetype of the savant. You know, like, your Rainman’s or when you’re talking about the more Aspberger’s side, like even if they don’t explicitly say it like Sheldon from The Big Bang Theory falls into this category. The Benedict Cumberbatch iteration of Sherlock. That has sort of come to define Aspergers, particularly those last two in the minds of a lot of people. And I do think that was actively harmful because it gives the perception that all Aspies have these specific traits where they’re like very cerebral, purposefully rude and condescending, uhm Asexual is a big one, that these characters are more or less portrayed as Asexual. Or that they have to like overcome their Asexuality, even though there’s no correlation between Autism and Asexuality, just Autism and awkwardness. So like, that sort of archetype , I’ve found, not that there aren’t, here’s the thing it’s not like there aren’t Aspie or Autistic people like that. But it’s the fact that that is the trope that so many writers fall back on since it’s narratively convenient. Like you have a character that can both solve a lot of problems, because they’re brilliant but also create a bunch of problems because they’re completely inept with regards to social interaction. Like that, I mean that’s the essence of a lot of narrative television. Like just trying to create problems and then solve problems in a systemic fashion over and over again. So it’s obvious why this character type is so prevalent. But there’s a wide spectrum of people with Autism, Aspergers, whatever. And I would like to see a broader representation so that people don’t have a very narrow view of what it means to be Autistic or Aspie.Because too many people when they see or hear the word Autistic, they see Dustin Hoffman’s character in Rainman. And when they hear Aspie and they see like Sheldon. Who’s one of the most annoying characters in the history of television.”
B- “I haven’t really watched that one, and now, I don’t know you’re not really selling it to me so I don’t think I will watch it.” *laughs*
P- *Also laughing* “Yeah, what’s annoying about that one is they say like “oh, we aren’t pinning it on anything. Obviously he’s like different but we’re not going to like put a label on it.” And I’m like “shut the [expletive] up, it’s Aspergers, like we know what lazy tropes you’re leaning on here” but yeah. Luckily I don’t want to write sitcoms so I don’t care if I piss off Chuck Lorre. But uh, yeah I’m sure he’s a good guy I just don’t like that one show. I love Two and a Half Men. It probably hasn’t aged well but I liked it at the time. *laughs* So yeah I would say with regards to representation in Hollywood there is people who are definitely trying to push things in the right direction. I will say what’s important to me is that it’s represented well insofar as the actual symptoms as opposed to putting a big emphasis on the “I’m getting Autistic actors” although both is the best case scenario. And uhh I have a couple scripts with Autistic characters in it, buy my scripts I don’t know. *laughs* But definitely in general listen to writers who are on the spectrum because there’s probably a lot of them out here who are undiagnosed as well.”
B- “Yeah, so I do have 10 minutes left on the free recording, but uhh”
P- “Yeah they don’t, they don’t check to see if you just do it again, and I don’t really have anywhere to be until like 8 *laughs* so” B- “I gotta do that Rent performance, soon-ish with Keira, but “
P- “Oh right right!”
B- “I love Rent, I think it’s a great soundtrack so I’m really interested to see that performance. Uhm, you know you kind of touched on a thing that itched my brain a bit. And I think something that I'm going to use my bosses phrase for it, something that we hate to see when it comes to the disability community. Is stories that really lean into like inspiration porn. And that’s a direct quote from my boss so I am okay to say it. And there like “oh my god look at this Autistic person or this disabled person doing this totally normal mundane thing that like is not necessarily special”, but they’re like “oh my god” because they did it and my experience with the disability community is they’re like “we don’t want to be special, we’re just doing the same thing that everybody else is doing. So treat us just like you would everybody else. I feel like it’s important, to yourpoint, to have these perspectives in the writers room of these projects, to avoid the tropes. Uhm it sounds like the booking agency, we’ll call it, that kind of got you”
P- “Placement yeah”
B- “Placement agency yeah. Is there a broader effort on that front in Hollywood? Are they doing that and like how’s that been going?”
P- “Well in terms of representation in general there’s been a big push in Hollywood recently. Both for like PR and genuine idealistic reasons. Like I think it was like 10 years ago, I can’t remember the exact staff, something absurd like 90% of writers were White and 83% were white men specifically. It’s much, much better now in terms of genuine parity, not that the US is the only place in the world, but it’s much closer to being in parity with the US population. In terms of like gender and racial demographics. Not perfect but much closer to what it should be instead of what it was like 10 years ago. Both from the perspective of like, trying to do the right thing. But also like you get better stories when you have a broader range of perspective. Like if you exclusively white guys who went to school in the NorthEast then you’re only going to get so many interesting stories. Whereas if you hire a diverse set of voices, not just in terms of demographics but I would hope that any writers room would include people of all cultural backgrounds, that includes like a hick from West Virginia. Hick might be a mean word but you, you get what I mean. Someone who comes from an unprivileged background in West Virginia regardless of their ethnicity. And uhm what I will say is I haven’t seen as much of a push for that, in terms of neurodiversity. At least broadly in the industry. I remember one time in college there was like this screenwriting contest for diverse voices. And I attended their meeting where they were like answering questions about it. And I asked if neurodiversity counted as diversity for the purposes of applying for this. And she said “yes if you also have one of the other qualifications such as gender, race, gender identity” blah blah blah and I was like “you could have just said no”
B- “Yeah sometimes its easier to just say no.”
P- “Yeah no would have been a much shorter and more respectful answer. I mean partially because it’s invisible and you can’t put it on a pamphlet or like, you have a picture of a writers room. And you say this is a diverse writers room. And if you have someone like me, who’s an Autistic white guy, that doesn’t help your narrative that you’re trying to promote. And I think that while there are people who are doing this for honest reasons. Some of it is just PR. But also because it might not occur to them as much. Not to say that because neurodiversity doesn't occur to them doesn’t make them an inherently dishonest person. But like I do think that representation, particularly in a storytelling industry, is important because everyone’s story deserves to be told. And that includes not just people on the Autistic spectrum but also other Neurodiversities and I would like to see a bit more of that.”
B- “For sure. And you know the last question actually, you answered it earlier so I’m going to change it up on us again. And this one answer it as much as you’re legally allowed to. We don’t want to get you fired. Uhm not going to be responsible for that. What, for the fans at home, can you give on The Night Agent Season 2? When can we expect anything fun out of that as far as release dates, trailers, etc.”
P- “Well okay so”
B- “Also for the folks that don’t know the Writer’s are 99.99% going on strike so there may be uhh”
P- “Yeah the current date is April 28th, and the Writer’s Strike is expected to begin on Tuesday the 2nd. So uhm if that strike happens, everything is put on pause, until the end of the strike. Which uhm, I believe the last strike was four months, but that was considered a pretty long one. Yeah 100 days, so about four months. A little more than three months actually, yeah so I expect it to happen. And anything that happens there will inevitably delay The Night Agent. I think they said they wanted it released in summer of next year. But of course that’s aspirational. As for how the show will do, I honestly, without being able to give you anything of substance, I feel more confident that this will be a really stronger season of television than I did last time. Not to say last time wasn’t good television. But there was a goal to like try to get as much done as possible before the strike, partly because Shawn wanted to get people paid, and we kept at a really fast pace, it’s been incredible to watch, and I think people will be very happy with the final product. Without being able to say anything about it.” *laughs*
B- “Cool, cool, and for folks references at home, and then I’ll close it out, the last writers strike, to my knowledge, a fair number of years ago, but a prominent movie you would all remember is you know 007, James Bond, Quantum of Solace. Was a production of the Writer’s Strike. And you really get a view of how critical writer’s are when you look at that movie and go “man this thing is stitched together in various ways” *laughs*
P- “Two other big examples of that are, I enjoyed this movie a lot at the time, but it’s because I was just happy with loud explosions, uh Transformers: Revenge of the Fallen. There’s a lot of stupid fun to be had in that movie but there’s basically no script. Uhh but the other big example I give people, and most people who are into television at all have watched Breaking Bad. And I just ask people that “did you notice that Season 1 doesn’thave a finale? It just dissipates and then you move onto Season 2?” And they’re like “yeah” and I say “Writer’s Strike.” They put their pens down, did not continue to make the show.”
B- “Exactly, well Paul thank you, and folks I am going to keep Paul on a little bit longer just to shoot the breeze, we’ve got a lot of catching up to do. But thank you for hopping on, and talking about your perspective. And giving a peek behind the curtain of Hollywood, for folks in the disability community. And folks this will be up once I take the billion years it takes to transcribe all this. This will be up on the Council’s website, it’ll be up on the social media channels, and it’ll be shared with Paul’s parents who I’m sure are going to go ballistic that we got to do this in a professional capacity. And will uhh hit stop recording, but thank you everybody for tuning in and yeah thank you Paul again.”
Episode 17: Sarah Tollefsen from ABLE NH
In this episode ABLE NH director, Sarah Tollefsen, speaks with Isadora about ABLE NH’s task forces and the work they are doing to bring grassroots advocacy to the community.
Learn more:
Able NH
Advocate NH Conference on October 4, 2024, in Concord, NH – more details to come
Episode 17: Sarah Tollefsen from ABLE NH
Episode 17: Sarah Tollefsen from ABLE NH
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Isadora Rodriguez-Legendre (IRL):Hi everybody welcome to That’s Inclusive a podcast by the New Hampshire Council on Developmental Disabilities I’m Isadora Rodriguez-Legendre, executive director at the DD council and I’m here today with Sarah Tollefsen from ABLE New Hampshire. Uhm and were going to learn more about Able NH and what they do. But first let’s have Sarah introduce herself.
Sarah Tollefsen (ST): Hi thank you so much for having me I’m really excited to be here today. Uhm So my name is Sarah Tollefsen and I’m the executive director at ABLE NH and uhm Able stands for advocates building lasting equality and our mission is to advocate for the civil and human rights of children and adults with disabilities. We promote full participation by improving systems, connecting families, inspiring communities and influencing public policy, so I’m happy to be here.
IRL: Yeah that’s great, that’s a lot.
ST: Yep
IRL: It’s definitely a lot. And uhm One of the reasons that we love ABLE NH is because your mission and our mission our visions align so well in that we you know really promote inclusion and community participation and really kind of taking action oriented approach and uhm for us you know advocacy is really important can you tell us a little bit about how Able advocates for people with disabilities ST: definitely. So ABLE to go back a little bit ABLE historically was really started by a group of parents who wanted to advocate for their children uhm children and adult children who were receiving services like through ah you know the DD services that we have in NH. Uhm and Ah so that’s been going on since it’s inception in the 90s. And uhm as time has gone on we’ve evolved a bit into still doing that, but also starting to acknowledge that we really also want to create opportunities for people with disabilities themselves to uhm to know how to and be in the right places to advocate for themselves. So I’m still doing that in regards to services we also do a lot of advocating at the State House through legislation and we’re very busy with that right now. But kind of that are the two avenues. And then I would say also we do a little bit of like community advocating too. Where we’re kind trying to reach out to just the general NH community and make sure that people with disabilities are not an afterthought, are a consideration in businesses and recreation and things like that.
IRL: yeh that’s great it’s very similar to what we do Uhm and we love that you all kind of give space to people with disabilities to be that voice to be those leaders in the community but really around topics that are important to them right? ST: yep IRL: And there is no shortage in those in NH in a place where we have our minimum wage is the federal minimum wage so people don’t earn enough there’s a housing shortage, there’s a workforce crisis to be able to support people with disabilities and really employment is also a big topic area I know for our members who have disabilities and want to work and are having trouble kind of finding uhm meaningful, competitive, integrated employment in NH that helps that supports them and in the ways that they need. Uhm can you tell us a little bit about how you became the executive director what kind of interested you in this field.
ST: Yes, so when I was in college, I went to Saint Anslem college and my mom was she was one of the vice presidents of the Moore Center which is one of the area agencies in NH and I needed a second job I think to pay for a car or shopping or something like that so mom was like well we’re looking for people to work at this group home and the group home had 8 people living in it. And they all had intellectual or developmental disabilities and also physical disabilities, so they all required a really significant amount of personal care services.
IRL: okay
ST: So I got a job there and it was like nothing I had ever experienced before stepping in there was just like stepping into a whole new world and uhm and I worked there I worked at the Moore center for 13 years and I worked at that group home for several years and it really just became a part of who I was and I was still kind of growing into a person while I was working there and I would say that the biggest things that kind of became a part of me were seeing other people not for what look like or their level of intelligence or their ability to run a race or play a board game but really truly like who they were as people and how they treated other people and uhm how they reflected on the world and were able to give and receive and uhm and what I came to realize was that I was surrounded by people who I could admire and have beautiful relationships with and uhm and also deserved the same things that anybody else deserved.
IRL: yeah
ST: and getting the same opportunities. So after I did that I worked in various ways in the Moore center I did do employment for a while since you brought up employment.
IRL: mmhmm
ST: And at the time that I started there there was still piece work that type of thing
IRL:mmhm
ST: Yes and I was like I didn’t know what I didn’t know and so I was just like this is outrageous that people are making less than minimum wage I don’t even understand. So we actually in our employment program which was robust we did away with it every contract that we had we either asked them to pay minimum wages or we removed we didn’t work with them anymore. And I was gone very soon after I started that. And then I did I brought Project Search to Manchester which I don’t think is there anymore at the time I had so much respect for the program because it really aligned with the way that I saw the world and people with disabilities which was that everybody regardless of disability or non-disability has some skills and value that they can add to any business and it’s just a matter of finding what things are and then kind of making efficiencies for each person at an organization to be able give back skills to the organization so I loved that about that program and then yeah so I worked at the Moore center for 13 years. And then I had some children, SO I also owned a yoga studio I quit the Moore center then the yoga studio and then I started selling real estate so I did that for awhile uhm but in regards to what brought me specifically to ABLE I would say I have always been really passionate about the rights of people with disabilities, human rights in general, the rights of children, women. And So the mission of ABLE really spoke to me and felt like it was the right fit for what I would like to contribute to the world
IRL: That’s awesome Its really really great I feel like a sense of identification because it s really great because when you find a job that really aligns with your passions for both kind of leaving the world in better condition than when you found it and also helping to educate and inform people about the value that every human begin brings to the table no matter what they’re going through what their situation is like we have to as human beings that we all bring importantly in every situation and that its that variety of perspective and lived experiences of differences that help us really uhm I guess find meaningful ways to connect everyone right in a similar way so when we talk about our disabilities work we say that improving communities and building a capacity for NH neighborhoods to support people with disabilities it helps Improved community and the neighborhoods for everyone that lives there its not an us and them type of scenario it’s a we’re all in this together so we better make sure it’s the best boat right we’re all in the same boat you better make sure it’s the best boat that can weather any storm and carry us wherever we need to go
IRL: So that’s fantastic, I love that. Tell me a little bit more about kind of the priorities that ABLE has currently.
SF: Yeh so uhm every year at our annual meeting we, so we’re a membership organization people can be a member and being a member means that you have like access to some of the trainings that we’re offering I would say probably most important from my perspective is you have a voice when ABLE is making decisions about the stands that we are taking on any particular issue that uhm that impacts people with disabilities uhm that to me seems like one of the big reasons to become a member as an individual so we poll our membership at our annual meeting and say what are some of the areas you’d like to work on this year and uh the membership decides and then we set up task forces to come together anyone who has an interest in working on that particular issue and that could be that’s members, other community stakeholders, other services providers, individual with disabilities, family members of people with disabilities and they will come together and they will kind of find one particular task that is actionable that they can work on throughout the next 6 months, or a year however long it takes to accomplish it So this year the things that we’re working on are, uhm our 2 new ones are transportation uhm which is a, such a wide
ST: Did you go to the transportation meeting?
IRL: I was not able to attend the transportation meeting but let me tell you that that is the nut that we’ve been trying to crack for a while there’s so.. transportation NH is so like community specific and the funding for it is so community specific that its really hard to make in impact where someone that lives in Nashua wants to come to Concord and like how do you make that happen it’s kind of been impossible to address that.
ST: Yeh We’re such a unique area like NH all things considered is just really rural so it’s hard to get places period. Uhm and one the things that you know I think the group might be interested in working on is kind of there’s a lot of topics that effect many people in NH not just people with disabilities and so there are already organizations who are working on particular issues and ABLE wants to also make sure that people with disabilities have a voice at those tables so when there’s others groups of people who are working on transportation And trying to crack the nut
IRL: yeah
ST: they’re not overlooking the particular needs that people with disabilities also have as it relates to transportation.
IRL: right
ST: part of like for that one their work might be to kind of to figure out who those groups are that are trying to work on it in general for the general community and then come to them and say let us be a part of your conversation so that you’re including people with disabilities when you coming up with solutions so that’s transportation
IRL: yeah now that it totally makes sense and its kind of true grass roots community organizing approach right is that you’re not going to reinvent the wheel you’re going to infiltrate for lack of a better word infiltrate spaces where there is all of this already happening get to know the players, get to know the the how the process works so that then you can be a contributor and collaborator within that process
ST: Yes IRL: we run into that all the time and sometimes there are groups or individuals that want to something new and something like that is important but cause then there’s an area that hasn’t identified and area of need especially for people with disabilities you’re swimming against the current if you are not working with the groups and with the organizations that the manpower have the funds have the resources that have all of the foundational work laid because again transportation is an area just like housing where there has been a lot of work in the state happening for many many years and lot of different players are contributing valuable time, energy, and resources and funding to helping address these issues. So you don’t want to create something kind of off to the side just specific for people with disabilities you want to go into the spaces and say okay here we are don’t forget about us and here’s how you support our needs within your existing plan right and that for me I think has a greater impact
ST: 100% you couldn’t have said it better and that is what as an organization the approach we want to take when it comes to big issues like that. And we’re really not we’re not equipped to we’re not a service organization.
IRL: right
ST: We’re not equipped to make up new plans and deliver them or to tell other people hey we have this great idea so that’s really our place is to go to those places and say we’re here people with disabilities are one in four people in the United States disability is a natural occurrence in human life and we need to make sure that you’re thinking of us when you’re making your own plans
IRL: that’s great, so what are some of the other kind of focus areas that you all have been working on ST: okay SO there’s a new mental health equity task force which as only me once and all our If anybody wants to check out any of the task forces we have a community calendar on our website and they’re all listed there.
IRL: nice
ST: Uhm and then we have a housing one. Housing is a really big issue right now for people with disabilities in New Hampshire everybody knows I think that has been kind of looming over our heads that there could be a housing crisis soon for people with disabilities Uhm an
IRL: Yeah I mean I think it’s already there right? there’s a housing crisis for everybody
ST: for everybody
IRL: the rents can be so high the inventory is so low and really the cost of living is way more those folks earn at a typical job right so it creates this issue and now you have competition for scares resources. Right and so people with disabilities sometimes have different types of income and depend on housing vouchers kind of fall to the bottom of the list
ST: yeh
IRL: cause when you’re a landlord who have the ability in new Hampshire that something were working advocating against is that they can kind of discriminate on the type of income and the type of voucher holds as a renter and they can choose whoever they think is the most the candidate with he most income lets say versus than someone that needs supports and services which is discriminatory and should not be allowed but it is in New Hampshire so were working on it.
ST: Yeah, that’s such a big issue and really because I work in real estate I do work with landlords and uhm I will say that I have small handful of landlords that I work with who like altruistically rent their spaces and are like I need to make sure I’m being equitable in the big picture and I they keep their rents lower you know they’ll say how much is this worth and I’ll say you could charge this much and I have people who will say I am not going to charge that much. It doesn’t seem right. And those are my favorite people. I love them. There should be more of them.
IRL: Yeah. There should be more and you know and there should be more landlords willing to make more reasonable accommodations for anyone, you know, whether they are already a tenant or are renting a vacant space. It’s really about considering what they individual’s needs are because they are going to be a good tenant if you are supporting whatever their needs are. Yeah, so that’s another tough nut.
ST: We are getting all of the big issues. We also have a civic engagement task force. Which that one has been going for a while. And Krysten our policy director, she runs that one and like last month she ran a training there on how to tell your story for testimony. It ended up that like a week later she was at a hearing and three people who were in her training testified.
IRL: How cool ST: Yeah, it was nice to just see how that came full circle and how the whole process start to finish worked out. That people took her training and used it in the coming week.
IRL: Yeah, that’s the best.
ST: Yeah, and then we have the oral health care task force. We do a lot of oral health care work at ABLE. That’s definitely one of our big priorities. And then we have…the last two kind of task forces are…you’re very familiar with one because you go to it, Advocate NH.
IRL: Yes!
ST: Which we are really excited about this year! So, Advocate NH, and please jump in if I miss anything, so Advocate NH was a self-advocacy conference that was being put on annually with some really great success from what it sounds like, until Covid.
IRL: Yes
ST: And if couldn’t happen obviously in 2020 and just kind of hasn’t been resurrected since then. So we were approached by umm, well we went to a meeting actually. I think you were there at that first.
IRL: I think me or some folks from my team.
ST: Vanessa was there
IRL: Yeah
ST: It was a meeting to talk about possibly getting it back going. And then after the meeting we talked with the Institute on Disability and they were like, would you like to work with us on putting this back on. Because you have the infrastructure for self-advocates. And we were so excited and thrilled to be able to do that. And we have just like an awesome group of people who are working to put that on. Do you have anything to add about it?
IRL: Yeah! I am super excited about this task force also. I think Advocate NH as a group that was putting on that annual conference was really supported by the Institute on Disability. There was someone there who used to help convene the meetings and help with the planning. So it kinda makes sense that there be kind of a group that helps organize and coordinate the self-advocates that are providing input. It was always talked about as a conference by self-advocates for self-advocates. So the people with disabilities, and I go to the task force meetings, so I know it’s the people with disabilities kinda of leading the work and getting things done and calling the hotels and thinking about what the topics areas that we want to present on. And so, it’s really incredible, so um, it’s also been helpful to kind of, what I see as a connection developed, having developed with People First of NH and SALT and being able to collaborate with other self-advocacy groups in the state to really have this amazing opportunity for people who are interested in either learning about advocacy or going to a conference where the leaders who are presenting are people with disabilities. And of being that power of example. Like all of the things that you can accomplish and all of the things that are important when you want to tell your story. When you want to advocate for better communities and more inclusive communities for people with disabilities. So, um, I always say that we are stronger together. So, something like this again is very exciting because there are so many groups, um, and individuals kind of really wanting this to be successful. So the conference is scheduled for October fourth in Concord, so we were both wrong. Yeah. We are excited. So far it looks like it is going to be at the Holiday Inn in Concord, on October fourth. You have some exciting topics that people with disabilities are excited about presenting. I think the theme is going to be the Art of Advocacy. And I know that there is an art project being planned by People First of NH. They were talking about it at their last meeting. So that is super exciting. I can’t wait.
ST: I do. I just want to echo that I love the partnerships that are being made and then if I can puff my chest for a second, I will say that the thing that I am most proud about, about ABLE, is that we are not just talking the talk, we are walking the walk. And everything that we do is done by, for, and with people with disabilities. We are not…umm… we know the value of our members and what they have to give. And they run with it. And just as an example, and I am sure he won’t mind, like me saying is that Alex, who is facilitating the Advocate NH task force. He, and I’m like, I was trained to facilitate groups. That was my last job at the Moore Center. I was a facilitator. And it takes like real skill to be able to do that. That I had to learn. I didn’t just know it. And that guy is so skilled at facilitating a group. And so, no one is going to stand in his way to be able to do that. He is truly doing a phenomenal job doing that. And it goes back to you have to for anyone, any human, you have to just find what it is, what their gifts are and provide the opportunity for them to be able to give it. And that’s how we all commune, I think, in the big picture.
IRL: Yeah. That’s great. I so appreciate that sentiment. And I definitely want to piggyback on that and say that part of what we appreciate about ABLE NH at the DD Council is your willingness to partner. Is your understanding that we all bring something and that we need to support people to really develop their leadership skills. To really build their confidence, build their skills and support them in whatever way they need. We have for a long time appreciated that ABLE is an ally and definitely aligned with our work. And a lot of times because we are a federally funded state agency, we have limitations that you all don’t. So we appreciate that you are all there and that you have our backs. And that you can say that things that we want to say, but because of our funding we can’t for example lobby or tell people how to vote on something. But we can certainly set up the story because we have plenty of families and individuals who umm, are either members or who are allies of our organization, who can very clearly say what the impact is going to be of some policy or law and then kind of, I feel like we tee it up and then you guys swing it out of the park by saying yes, you can’t vote for this, right?
ST: Wow, we are, we do, that is a great description of how we can all partner with one another and ABLE’s place in those relationships. Those organizational relationships and right now the staff that we have. We have such an awesome group of people that are working at ABLE. And we spend a lot of time talking about how we can advocate for the difficult issues while still remaining respectful. And in partnership with people and organizations that we don’t always have the same views with. And everyone in our organization right now is just really skilled at that. We are really a group of thoughtful and kind people who are also delivering difficult messages sometimes, I think when it comes to advocating.
IRL: Yeah and it makes it that much more easily heard I think. When the messenger is someone who kind of understands how, you know, human relationships work and how people are wired to align or not align with certain viewpoints. Like really being able to have the approach, really person-centered approach, I want to say, to advocacy and finding that thing that someone who maybe doesn’t align with all of the priorities that ABLE has. But finding that thing that you connect on, that’s common ground. And really developing that relationship to be able to work together no matter what. We have a common goal, right.
ST: We do. So many of the organizations that we work with. I started thinking about this when you started talking about how our missions are aligned. When I first started, I looked up the missions of our 3 advisor organizations. So, you, the Institute on Disability and the Disability Rights Center, and I was really surprised and delighted to see that there was common threads throughout all of them. Even though we are all doing a little bit different kind of work, we are all working towards the same goals.
IRL: Absolutely. Thank you so much, Sarah for taking the time today to talk to us on our podcast.
ST: Thank you for having me. It was fun!
IRL: We look forward to working with you on many of the areas of need that New Hampshire has and of really building our advocacy networks and building the leadership of people with disabilities to really say what they want and to be that voice of change in New Hampshire.
ST: We have a lot of work today but we are looking forward to doing it. We are very, very thankful for our partnership with you.
IR: Thank you.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 16: Adaptive Sports Partners of the North Country
In this episode, Chase talks with Kelly Starr, director of Adaptive Sports Partners of the North Country about the important role that sports serves in creating inclusive communities.
Learn more:
Adaptive Sports Partners
Episode 16: Adaptive Sports Partners of the North Country
Episode 16: Adaptive Sports Partners of the North Country
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
CE: Hello and welcome to the That’s Inclusive podcast from the New Hampshire Council on Developmental Disabilities. My name is Chase Eagleson. I am the Policy and Planning Coordinator at the New Hampshire Council on Developmental Disabilities. And today, we’ll be focusing on adaptive sports. And with me to talk about adaptive sports I have –
KS: Kelly Starr. I am the Executive Director of Adaptive Sports Partners.
CE: Awesome and thank you for being with me today.
KS: Thank you for having us. We’re very excited.
CE: So I’ll just start right off. For those unfamiliar with the topic, would you mind describing what adaptive sports is?
KS: Sure. Adaptive sports broadly are sports, recreation, adventure activities that are catered to people of all kinds of disabilities. So sometimes that can be specialized equipment, that could be specialized instruction, it could be a combination of the two. It’s really just to create access for everyone to access sports and recreation. Adaptive Sports Partners in particular is a non-profit organization, which a lot of adaptive sports organizations are—non-profits. And we operate for facilitate inclusion through sports and recreation and adventure.
CE: That’s awesome. I for one am a big fan of sports in general. I grew up playing sports. I think I played about seven sports throughout middle and high school including the kind of sports your organization offers. I love it. I know everyone that plays it regularly loves it. And I just love the fact that we have organizations like yours that offer adaptive versions so that everyone can actually play. It’s no fun when people get left out. That’s always the sad part.
KS: Yah, I agree. There’s just a lot of joy and a lot of benefits that come from adaptive sports.
CE: It’s a great community feeling. It seems so beneficial just to be there, even if you’re just watching it. The opportunity to step in and play, throw the ball, or whatever you’re gonna do is so important to that whole aspect.
KS: Exactly. And you can really participate at whatever level works for you. So if you just want to be part of the community and do some recreation, that’s great. If you want to compete, there’s that space too. If you want to do somewhere in between, you can really find your community niche.
CE: That’s fantastic. So, tell me a little bit about, you’re the Executive Director, you’ve been through this a lot. Tell me a little bit about what drew you to work with not just the disabilities community but with particularly adaptive sports.
KS: So actually my background is in special education. So I was a teacher and I was in the classroom. Loved my kids, loved being with them every day, but I noticed that really the goals were set up in the classroom in the education system just didn’t cater to them. They were lacking the opportunity to recreate, lacking the opportunity to be part of the sports community, and really to be part of community in their school system and then outside of their school system. And while I loved it, I loved making relationships with my students and empowering them, I knew that I wanted them to be able to find the joys that I found and the passions that I found with recreation and sport. And so that lead me to experience adaptive sports. I was an intern for a variety of organizations and really was like, this brings meaning to people’s lives and this is empowering and this is what brings joy. This is what helps people get outside and recreate and play and build community. It’s very empowering and I think it’s really important. So, that kind of was my trajectory. I working really directly with people with disabilities in the education system and then I thought there was a lack of programs to support outside of the school system.
CE: That’s definitely true. You see all these sports offered in clubs offered in high school, middle school and even college, historically most of them have never even been close to inclusive. Adaptive was out of the question for ever, let’s be honest. Other than wheelchair basketball, which even then, that’s more segregative sports than it is adaptive than it is inclusive. Giving someone else something instead of joining together. Make a community sport. What sports are supposed to be. It’s supposed to be community building. That actually leads me to my next question. Why is it so important in your eyes for sports to be adaptive?
KS: Yah. I would say in the grand plan of my dreams – adaptive sports wouldn’t even exist in terms of specialized organizations. Like Adaptive Sports Partners, we’re doing our job right, we’re working ourselves out of a job because traditional sports settings are automatically inclusive of all. So they don’t need us to help make them inclusive because they’re designed for everyone. But, as we know, that’s not the case in current standards. And that’s ok and that’s why we exist. That’s why adaptive sports programs exist. So the importance of them really is just to kind of exactly what we’ve been talking about – we create a space where people can build community, they can build their skills, they can be empowered through sport, recreation and adventure. That can look like anything. It can be they’re joining their school basketball team with support. They’re taking swim lessons so that they’re safe. They’re training on the ski slope because that brings them a lot of joy and freedom. It can be they’re using equipment or they have specialized instruction. Really, that’s where we come in. Where a traditional setting doesn’t work, we’re trying to eliminate people with disabilities experiencing the “I don’t belong here” or “You’re not welcome here” or “try on a different team because this isn’t the place for you”. We’re trying to really eliminate that and ensure that everyone has access.
CE: That’s fantastic. Belonging is an essential part of life. I believe that’s one of the bottom parts of Maslow’s hierarchy. If you don’t feel like you belong, if you don’t think that you’re part of the community that you are supposed to be a part of, it’s seemingly impossible to join into it. One of the reasons I wanted to do this episode was I love sports in general, but adaptive sports brings an easier idea into the community for many who for years and years have been socially isolated. Especially when it comes to recreational activities.
KS: And even historically, that’s just like-- in terms of “you guys go here and everyone else can go there”. So adaptive sports really helps to mold the progressive thinking. We all belong everywhere and we’re going to establish that.
CE: There’s noany segregated spaces and there never should be. Unfortunately we’ve had them. I think attacking it from the recreation angle is a very interesting one. We have organizations like White Park or some other adaptive trails and for a while they were kind of working the background because again, people didn’t think that individuals with disabilities deserved to be in those spaces. Obviously, we both know there’s no ‘deserving’. We all are in those spaces because we’re all here. I just want to say again, it’s fantastic seeing the kind of opportunities you offer especially coming into the season. It’s winter and this is New England, and we’re kind of known for hockey, we’re known for skiing, snowboarding. I actually noticed some adaptive skiing on your website. I was wondering if you’d talk about that?
KS: Yes, absolutely. And you bring up a good point about the region where we’re at. Our communities where we operate out of- we’re in the Franconia area, we’re in the Northeast corner of Vermont, in the North Country of New Hampshire— two recreation meccas. They feed off of recreation. Everyone around you is recreating and enjoying these beautiful spots that we have – waterways, trails and skiing. And so, it’s kind of in our culture of our communities. Having to imagine that you don’t fit into that or do you? Hopefully, we’re eliminating those questions for people. So, adaptive skiing. We’re entering that season where we’re doing all of our snow dances. We operate out of Canon Mountain, Burke Mountain and Jay Peak. It is amazing. So, we tons of equipment. We have things called bi-skis. Which are skis that have two skis on the bottom. We have monoskis which is a with one ski on the bottom. We have a tetra-ski which has a joy stick operated ski as well as a huff and puff ski for high level injury or disability. And we also have tons of standup techniques to support whether that’s people with autism, developmental disabilities, down syndrome – whatever it looks like. Whatever your disability is, we have a piece of equipment to get you out on the mountain and skiing and enjoying that.
CE: That’s fantastic. And as someone from New England who regularly skis, who has his own skis, tries to do it every year we have snow- at this point it’s not looking like we’re have much snow this year. I think it’s a huge part of community around here. We’re New England. We’re known for snow. We’re known for being a bit frigid up here during the winter. And if you’re not part of that culture, it’s hard to feel like you’re part of the New England community.
KS: It takes a toll on your mental health too.
CE: Especially since we’re in such a rampant mental health crisis. It doesn’t help when people are not allowed in to the very popular sports, the very popular pieces of the community that we have in New England that are so well known. Our trail hiking is very well known. That’s become more adaptive over the years which is amazing. I’ve talking about skiing and snowboarding. I watched some videos on the seat with the two skis-
KS: Yes, the bike ski.
CE: I’m kind of jealous! That looks so entertaining. I really want to try it!
KS: You’re always welcome to come and try it.
CE: I’ve seen them up at Pat’s Peak and it always looks so cool.
KS: Yah, it’s very fun.
CE: I guess there really is no wrong way to-
KS: No, go out and enjoy the snow, enjoy the mountains and build your community the way we’ve talked about.
CE: You m mentioned that you worked with JP Canon and Burke. Do you have things that you work out with those organizations like they help you guys get in there –
KS: Exactly. So they’re all partners. All of our partners are amazing. We also have partners with North Country Climbing Gym, Evergreen for swimming, Powers Park for swimming, different hiking venues, golf courses. So we have all these partners that, as a non-profit, they are critical to our success. And these partners have essentially committed to being inclusive and to ensuring that everyone can access their spaces. And they’ve done that by committing to partnering with us. And so by partnering with Adaptive Sports Partners, they’re saying you guys are the experts. You are going to have the equipment, and the training and the knowledge to ensure that everyone can access what we have to offer here. They have been awesome. It’s really important to have them-- Partners is in our name and it’s something we’re very appreciative of and just love their commitment to inclusion.
CE: It’s really nice to hear. I grew up in New Hampshire. I’ve been here for 24 years and a lot of those names I know by heart at this point. And it’s nice to see that over the years coming together as a community. Trying to actually make sure that everyone is included in every space. Because if you’re not including them, you’re excluding them. They’re not there, you’re trying not to let them be there. Some of these organizations like Canon, and some of the other ones you mentioned – it’s nice to see that these big names are actually putting themselves out there and making sure that everyone has the opportunity to use their spaces to be part of the community and to just enjoy their days. KS: It’s just wonderful.
CE: And speaking about being part of the community, what are some of the benefits you have found being the Executive Director of Adaptive Sports when it comes to both the disabilities community and the communities in general?
KS: Great question. There are so many and I appreciate that you asked about the benefits to the community, too. The benefits to the community- we’re in spaces we’re creating just the acceptance amongst people with disabilities. Let’s say you’re at the ski mountain and you may not have experience with people with disabilities outside of being at Canon Mountain, or Jay, or Burke. And you’re seeing us out there skiing and shredding and doing exactly what everyone else is doing. And it really just kind of normalizes, levels the playing field and you’re like “we’re all doing this”. Same thing at the climbing gym, same thing with swimming. We’re all in the community, we’re all exercising, we’re all recreating. Everyone can do it- that makes sense. Mountain biking, whatever it is. You see us out on the trails and it just kind of humanizes everyone. We’re all doing the same thing regardless of disability. I think that’s important for a community. Not having any separation. Everyone is just together doing what we all love. And then when it comes to people with disabilities, the same benefits we all have with recreation. There’s positive mental health, there’s physical fitness, there’s community, there’s social improvements. All of those are even more important for people with disabilities because of the additional challenges that come with having a disability. So you might already be behind the game in terms of being able to exercise or being able to get out and go for a run on your own or go for a bike ride on your own because you might not have the equipment. Whereas we’re trying to eliminate that and to really work on being a place where you can experience the benefits. Because there’s so many outside and movement and getting through winter positively. Having a social community. It’s huge.
CE: It’s a massive part of what we’re all trying to do, which is to push inclusion. Because as we know, for years, social relations have been a plague on the disabilities community. I want to focus on one of the things you said. You don’t know until you know. And a lot of the people just haven’t experienced getting to meet and getting to know someone who that has a disability. A lot of people just sort of live in a social bubble way. Where you only know the things that you know and everything else is foreign to you. I think organizations like yours, like Adaptive Sports, and many other organizations throughout the state – we’re very lucky to have done a great job making sure that everyone is in every space. Without that, ignorance just prevails.
KS: And you know, kind of with that, I know one person with this disability or one person with this disability, that’s one person you know with one disability. As we know, disabilities look so different on a bunch of different people even if it’s the same disability. Or different ages or different genders, or whatever. All this looks very different. I think it’s important to show different types of disabilities that are out there, what your bodies can do, what your minds can do. Yah, you meet one person with a disability – you meet one person with a disability.
CE: As you said, it normalizes everything. Again, a lot of it doesn’t seem normal at times to people but then you meet an individual with a disability. As the ADA says, disability is a normal part of the human experience. It’s just another thing in life. We’re all different from each other. No one’s the exact same, even twins. I think it’s extremely important for individuals with disabilities to be able to be there so people can experience. Without experience you don’t really know what it’s like. We’ve kind of talked about some more serious stuff so I want to get into some more fun stuff. I just want to have you talk a little bit about the programs that Adaptive Sports offers and just focus on some of your favorites that you’ve seen.
KS: Skiing is definitely my favorite. We’ve talked a lot about that one. There’s no doubt that it is my favorite program. Anyone will tell you that. I just love people that are skiing with their school groups and skiing with their families and skiing with their partners and skiing with us. I think skiing is such a community, such a vibe, and is wonderful. And our partnerships with our ski resorts are also so great and it’s so nice to see that. I also really like swimming is a great one. Adaptive swimming is so incredible. And it’s not only a safety thing in terms of learning how to swim, but it’s also just a relaxing place and it’s an exercise and it’s just really great for the mind. Swimming is amazing. We have adaptive biking and kayaking in the spring and summer and fall and they are--fall kayaking is just gorgeous. Mountain biking with the leaves changing. Amazing. We have a learn a bike program. That program is just wonderful, teaching all ages how to bike via balance bikes. And so you typically think of balance bikes for toddlers but these are for all people who are interested in being on a two-wheel bikes. We can support teaching you how to find your balance and bike with pedal. So I also like the programs that are not traditional adaptive sports as you would think with heavy equipment. There are some that are just, people learning how to ride a bike. It’s amazing.
CE: That is amazing. A lot of those things are so important. Life tools, most people need to know how to ride a bike. People just like riding bikes, especially around here. You go around in the fall where it’s beautiful or bike around and look how nice it is around here. Things like swimming. Swimming is extremely important for this area. Lots of waterways.
KS: Lots of waterways - Reservoirs, ponds, lakes.
CE: Lots of places to go. Kancamagus. Go over to Vermont, go to Queeche. Winnisquam. There are so many different places to swim around here. Being able to be part of that experience is being able to understand what it is to be a New Englander. So it’s kind of what we do. It’s pretty much all we do. So that was actually the last question that I had for you. Is there anything else you’d like to say before we wrap it up?
KS: No, that’s good.
CE: Well, thank you listening. This has been That’s Inclusive! If you’d like to reach out to Adaptive Sports--
KS: You can always call me: 802-307-2940 or shoot me an email at kelly@adaptivesportspartners.org and have you talk to everyone. Reach out.
CE: Thank you for listening and thank you for coming Kelly.
KS: Thank you so much for having me. It’s great.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 15: Storytelling Through Media
In this episode Vanessa and Pat discuss storytelling through media platforms and how advocates can use these channels to elevate their voices and effect change.
Learn More:
Jim and Pat, YouTube Channel
Episode 15: Storytelling Through Media
Episode 15: Storytelling Through Media
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
VB: Hi everyone and welcome back to That’s Inclusive! And today we have a very exciting episode. Today we are talking to Pat Piet, our fellow podcast host and producer. And we’re going to be talking about her experience of advocating through her different media channels. Pat, would you like to introduce yourself?
PP: Sure, and anyone who’s listened knows who I am. I’m a council member and an advocate. I run a YouTube channel with my husband, Jim Piet, focusing on ableism and inclusion. I’ve written some articles and recently spoke at the Winter Awards Ceremony which was a lot more fun than I anticipated!
VB: You looked like you were having fun. And I think other people were having fun listening to you.
PP: Once I got going I was ok. But like, the night before, I had this moment of, oh man, what did I agree to. It went really good sharing stories. It’s a lot of fun to share your own story. It’s a lot of fun to hear other people’s stories.
VB: So, that’s one of the things that I wanted to talk to you about was the way that you’ve been using different media channels to share your story and your Jim, your husband’s story, and the story of your family. I was interested in the project you were doing at the Caregivers Conference, where you were recording other people telling their stories. Can you talk a little bit about that?
PP: Yah, that was great. I had people come into a room. I had my video equipment and I just asked them to tell me about caregiving. Tell me really anything they wanted to share about caregiving. Right, about caregiving itself or if they wanted to share a specific story they think got to the heart of the importance of caregiving. The importance of family caregiving. Especially since we don’t tend to value family caregivers. And so hearing people’s stories about, especially, caring for a spouse since they’ve gotten older and dealing with those changes – how do you do that. People just have the funniest stories. One woman was telling me about the first time her husband failed to recognize her. And how meaningful that story was. And how it affected her emotionally and how she learned to navigate being married to someone who was different.
VB: I remember I was at the DD Council table and we were telling people about the project you were doing and inviting them to be part of it and signing up for people to go ahead and tell their stories to you. And there was one person who was kind of like – I don’t really know if I have a story to tell—and then within twenty seconds was telling me a story and I was like, I’m pretty sure you have a story, you should go and tell it. And you could tell the recognition in her eyes, that she was like, oh yah, maybe I do have something to say that people might want to hear. And that’s obviously the power of storytelling. You never know who’s out there that is going to be impacted by what you have to say. I think we’re starting to really recognize what storytelling can do for advocacy and the way that there are so many different media channels that we can use now to get our stories out there. And how people can access this information and these experiences through these media channels especially the power of YouTube. I’m just always amazed at what you can find on YouTube and just how easy it is for someone to upload anything they want to say. So I want to hear from you about how you started your YouTube channel. What motivated you to do that and how did you feel about first putting your content out there?
PP: So, what motivated me was I didn’t see a lot of content in the local NH media that really told any positive story. There were people using images of people with disabilities. There were people who didn’t have disabilities who were putting stories about disabilities out there without having any concept of disability. Specifically, disability as a culture. Absolutely no understanding when you’re putting someone with a disability in the public eye, it’s not just that individual. That individual represents an entire culture of people and you have to be very cautious about how – If you’re telling your own story, you tell your own story the way you want to tell your own story. But when you’re telling someone else’s story or helping them to tell their own story, you need to be very cautious and you need to be aware of 60 or 70 years worth of history of the disability rights movement. The few stories that we were being told, were being told without any context. And so I wanted to give disability stories context especially locally in New Hampshire. There are several disabled YouTubers, but I had to go look for them. I had to put in like top ten disabled YouTubers and find out who they were Because you don’t--
VB: It’s not like it falls in your algorithm like other things do.
PP: I thought maybe if Jim and I started doing YouTube videos, local New Hampshire people would watch if they watched our videos then these our videos would start coming in that algorithm. I’m still trying to figure out how that all works.
VB: That’s a great strategy that if people only look it up once, then it highlights a lot of other content.
PP: I do try to connect to other YouTube videos about disabilities, whose content I really like so that people here in New Hampshire will find out about them. So just telling the story about disability in New Hampshire from the perspective of a person with a disability and not just to each other. Trying to make it accessible to more than just the disability community in New Hampshire.
VB: One of the things I really like about your YouTube channel, is that it’s you and Jim, out in the community, doing fun things. There’s one that I watched where you were on the Marginal Way in Ogunquit, which is a place that I really love. Or like you’re just out in the community enjoying recreation and it’s just about how easy it is for you to find places to that you can do the things that other people are doing without it being a special event. It’s a day of recreation for Jim and Pat.
PP: One thing I’m always keenly aware of is that oftentimes were the only people with disabilities in a given space. And I’m not sure why that I know that the regions are far reaching and complex. A lot of it is not getting the support needed to get out there. But I also wonder if it’s just not knowing what’s available. Or a lot of people would not be able to see themselves doing it. So if you see someone like you doing it, OK, maybe that would work for me.
VB: Yah, I can see that. I can see like having a vision is a lot about the spaces that you think you can access and not access. PP: I’m fortunate in that Jim says let’s just try to go do it! And I’m like -What if this happens, what if that happens? If worse comes to worse we’ll just end up in a fast food joint. We go to all sorts of restaurants. We also have had quite a bit of luck too.
VB: Like I bumped into you at the Mt. Washington Hotel.
PP: That was so funny. That was a gorgeous day. Like I said we were the only people with disabilities there. Certain places we go there are more people with disabilities, but I feel we stand out like sore thumbs. But that’s not the reason why. People can look at us anyway. Walking around with a camera with me because--
VB: It’s not like you’re attracting more attention than you would otherwise. One of the other things you do a lot of advocating for through media is the discussion around inspiration porn and ableism. I want to hear about how you’ve been using your talents to bring more awareness to those things.
PP: I wrote one article that I’m sure some people are aware of criticizing some famous New Hampshire people and it got a lot of attention. It’s funny, I had a few people tell me how brave it was and I said I was just pissed off. I think for me, I was just so tired of every time something came on the television, Jim and I would grunt and groan and throw things at the television until finally, you know what? I’m going to grunt and groan at the entire state. It ended up all over the internet. My daughter found out about it from someone I don’t even know who found out about it from a person who worked with them. I found out that a lot of people feel the same way I do. It’s not just within our community. It ended up being getting a lot of attention. I think that’s what frustrates me a lot in New Hampshire. We have our little circles and we talk to our circles. And I get that it's hard to talk to someone who might not understand where you’re coming from. And I get that it’s hard to put something out there that might be considered really controversial. But things don’t change unless you do—I wanted people to know that not all people with disabilities were ok with this.
VB: That’s true. Because that was the impression.
PP: The impression was that people with disabilities love these people! And, ah, no!
VB: I remember when we first started talking about it and talking about you writing something about it, how I think you felt a little bit alone in that place where you were just so frustrated by it. And once we started to spread the article around, how many people were saying, I feel this way too. Or thanks for helping me put the words to what I was feeling about this and more and more and more and after awhile it was just like this whole group of people who actually are not ok with this. Which again, is the power of one person saying I feel this way about this and I’m just going to put it out there and see what happens.
PP: And I think that’s a good point. If you see a problem, other people are seeing it too. You feel like you’re the only one and maybe no one is talking about it. You’re not the only one. Somebody just needs to hear the words to make it make sense to them. And by telling it in a story, like when I spoke at the Winter Awards Ceremony, telling our personal story of experiences where people were ableists that was the part of the presentation that will stick in people’s memory. Them being able to make the connection between the images of inspiration porn and someone with a disability actually experiencing a very intrusive, uncomfortable situation. Because the damages are out there. Telling your story as a person with a disability. At one time it’s very unique and very personal and it needs to be told because it is so unique. But it’s also universal at the same time. And people seem to be able to connect it to themselves in some way. And it will make what maybe didn’t make sense, make sense to them. We feel so alone. At the Winter Awards Ceremony, one of our winners was telling a story about someone that she used to care for who had a physical disability. And this person, when they were infantilized by a stranger, didn’t say or do anything. And maybe part of the reason they didn’t was because they felt alone. They just got so tired of feeling like they had to stand up for themselves by themselves. No one else was experiencing this. And so if we have to use whatever the sway is, or something painful or awkward, somebody out there who had that happen and felt very alone, will go – they will suddenly feel impowered and they will tell their story.
VB: And there’s so many ways to be able to do that now.
PP: If you have a smart phone, all you have to do is record and hold it up to your face and talk. You can easily put it on tons of platforms. If you don’t know how to do it, just google it or have someone else google how do I post to whatever platform I want to post it. I think sometimes we don’t do it because we fear backlash. But there are so many people posting. Odds are that it’s going to take a while for anyone to know you-- what got me started was these people saying just hit record and do it and do it and do it. Only friends and family are going to see it at first. Once you overcome that fear of that first post or that first article, it becomes easier and easier and easier.
VB: Yes, that’s great advice. I remember when we were just talking about doing a podcast and both of us being like, ok, how do you do a podcast? And then you found out about how Concord Community TV had a program and we came down here and Josh did an awesome job training us – which actually doesn’t take a lot of training. And now we can access the studio, we’re not professionals- but we are now, professional podcasters. But it just took you and I being like, ok, let’s figure out how to do this.
PP: And that’s how it was with the YouTube channel. The first video, I didn’t have any equipment. I had my old phone and I actually put a chair on the bed and leaned the phone up against the back of the chair with the books to hold it at just the right height and just recorded myself talking about why I thought it was important to get a story out there. Just a recording, just start telling your story, however you can. If you don’t have a smart phone, somebody in your circle has one. Having them just hold the phone while you tell your story. You can get really deep in the weeds. Specifics I’ve learned - I’ve learned a lot of tech stuff, graphics because to me, that’s just a lot of fun, I’m just kind of a geek that way. But, you don’t have to do any of that. I’m just her to tell the world how it makes me feel, what this experience meant to me. Those are actually the ones I love to hear.
VB: And I should let everyone know that if they want to tell their story, and they’re not really sure how to do it, they should contact the Council. We have an open invitation to people who want to come on the podcast and talk about stuff that they want to talk about. We have Pat here who can come down and record people’s stories if they want. And maybe even just talk to them about how you got started and give a little tech advice or anything that they need. So the Council is definitely a resource and we’re here to support people in the ways that they want to be able to talk about their life experiences. So they should definitely give us a call. Our number is 603-271-7040 and obviously you can find us on line.
PP: Your story is important. It has power. If only changes one person’s mind or gives one person hope or purpose, it is worth telling. There is no one who doesn’t have a story. Everyone has a story that’s worth telling.
VB: Yes, that’s very, very true. And we probably are going to have a lot more opportunities for people to tell their stories at different conferences that we’ll be attending, definitely at the Family Support Conference that is coming up in August. We’re going to have a place where people can come and tell their stories. But also it’s just an opportunity to just watch people in action. Even if you just want to watch it happening.
PP: It’s funny- people will tell me they’re uncomfortable but they start talking and then they take off. We have so much to say. We’ve been holding it in.
VB: Like you said earlier, you might think you’re alone in your experience, but chances are there’s someone out there that is also experiencing some of that. And that, being able to connect with that person and be able to connect with those ideas and not feel alone can be a turning point for people. When it comes to being more engaged socially or with the community or; like with caregivers, we talk about caregivers being an invisible part of society. And just being able to say things that other people might say, “Oh, I feel that way, too” or “what’s gonna happen in the future? Maybe this is gonna happen and I need to know I can talk to somebody about that”. It’s very powerful and you are such a great role model for someone who just put themselves out there who said I’m going to take this on, I’m going to do these things. I think that’s a tremendous value for the disability community to have someone like you who isn’t just talking at people but you’re just kind of like advocating for inclusive living. But, I think that you really do fully embrace the idea of living fully inclusively in the community- I think that’s so valuable to people to be able to see someone doing that and living it. And then going out and talking about it, there needs to be more of that in New Hampshire.
PP: Yes. Thank you. And that’s one thing that I wanted to do with all of my work. It’s not just a problem within the disability community. People with disabilities have not been good at cultivating the next generation and compelling--you usually learn your culture from your parents. I must say the LGBTQ community has been much better at this and supporting young people who are part of that community. Whereas the disability community, we’ve had such meaningful heros, that as they’ve passed away, there’s been no one to fill their shoes. One thing I wanted to do with this was to help to raise up the next generation in any way that I could.
VB: Definitely needed. And a topic that could take up a whole other podcast. We’ll have to bring that back around. But, definitely soon. I think that’s a great discussion to have. Thank you for coming and can’t wait to get back out there and watch you tell more stories.
PP: Yah, I’ve got to get my computer working.
VB: Is that a technical issue? Isn’t that what we were discussing?
PP: Yah, sometimes you just have to be patient. VB: With tech. Well, thank you for coming and in closing, just want to say since this is dropping in January, we hope that everybody had a safe and happy holiday season and that you were able to get some relaxation time in there because these days everybody needs a little extra relaxation. Thanks a lot Pat.
PP: Thank you for having me.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 14: Mental Health and Disability Collaborative Care
In this episode, Isadora talks with advocate Kelly Ehrhart and Julie Lago of Center for Life Management about the collaborative care model that is changing the way disabled people with mental health needs receives care in our system.
Learn more:
What is Continuum of Collaborative Care? A specialized approach that coordinates care across services and providers for better person-centered outcomes of services.
Center for Life Management
Community Crossroads
Episode 14: Mental Health and Disability Collaborative Care
Episode 14: Mental Health and Disability Collaborative Care
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
IRL: Hi everybody and welcome to That’s Inclusive where we have conversations with the DD Council on inclusive community-based lives. I’m here today with Kelly Ehrhart and Julie Lago and we’re going to talk about supports and services for people with developmental disabilities who also have co-occuring mental health conditions and what are some models that seem to be working for those folks. My name is Isadora Rodriguez-Legendre and I’m the Executive Director at the New Hampshire Council on Developmental Disabilities. And, I’ll hand it over to Kelly to introduce herself.
KE: Hi. I’m Kelly. I live in Nashua, New Hampshire. I have a mental illness. I also have ADHD, depression and I also am on the autism spectrum.
IRL: Welcome Kelly.
KE: Thank you for having me.
IRL: Yah, it’s great to have you. And Julie, would you like to introduce yourself?
JL: Sure. I’m Julie Lago. I’m the Director of Collaborative Care at the Center for Life Management. We are the community mental health center in Region 10 and together with Community Crossroads, we co-founded the Continuum of Collaborative Care model which we’re really excited to share with you today.
IRL: Yah, we’re really excited to talk about this model. The first question that I have kind of leading into a conversation about the model is a very general question about why it’s important to have quality services for people with developmental disabilities and mental health conditions. Kelly, do you want to take that one?
KE: Yah. I’ll take that one. I think that it’s important that both of, like, I have a mental illness that I get good quality care in that department and also in the developmental disability department. Because if you don’t have quality care, like I haven’t been to the psychiatric hospital since 1998, which is a very long time, you won’t be able to stay out of the hospital or function on your job – I have 4 jobs – or, do the things you want to do. Like do yoga, go to the library, be a member of your community. You can’t do that if you have symptoms of your mental illness overwhelming you. Or if you don’t have a nurse to prescribe your medications so you can take your medication. ‘Cause if you don’t take your medication, you wind up in the hospital not functioning well. And at the age of 31 I was actually diagnosed as having depression and medicated but before that time I wasn’t. So I didn’t really experience good quality mental health care. I experienced no quality mental health care. No mental health care at all. And so in 2014 I was not given services for my autism. So, I had no services for developmental disabilities either. I was born in 1966, so that’s a long time to be without services.
IRL: Yah. It sure is.
KE: I’ve also lived in three states- Illinois, Virginia, and New Hampshire. When I came to Nashua, that’s when I got services for developmental disability
IRL: So, shout outs to New Hampshire then!
KE: Yes. I lived in Rochester, New Hampshire. I didn’t get any services through their agency. And it was a mental health, developmental disability agency. I won’t name it because I don’t want to call them out. But, actually they knew I had autism, but they gave me a psychiatrist and I had a diagnosis of hoaring, so they decided that I didn’t really—I couldn’t have a therapist from then because of that. I had to go an hour and half to Portsmouth to see a therapist actually.
IRL: That’s very interesting that they would deny you services for one thing because of another thing. We were just talking about how important it is to unsilo the services and supports that people might need and provide that kind of holistic approach and wrap around services.
KE: Yah, I go to Harbor Care. They have doctors there, pediatricians, they have a dentist. I see a doctor outside of there through Solution Health. But, I do have my dentist there because she takes the Medicaid dental benefit. And it’s also sliding scale. And on my Medicare health plan, I have dental benefits through there. So, I have triple benefits in a way. I have Medicaid, Medicare and a sliding scale.
IRL: Yah, so would you say health is important to you?
KE: Yes, health is very important to me. Because when I went for my wellness visit which is what Medicare pays for, they gave me recommendations and I looked at the recommendations and I said I’ve done all these. Except for one. They said get nutritional counseling and then I told my doctor I needed a referral for a nutritionist. I’m going to see them in December.
IRL: Great! I definitely know that you’re a strong advocate for what you need and you’ve had a lot of success getting people to really recognize that you deserve to have all the supports and services that you need to be an integral part of your community, which you are.
KE: Yes. I think that not everyone gets that because they don’t know how to speak up for themselves. I’m also the President of People First, in my second term, so we try to help people learn how to advocate for themselves and advocate for other things besides themselves like, self-advocate leadership team, they’re working on housing, transportation, computer skills and community living, computer literacy and things like that. Basically, that’s important, too.
IRL: Wonderful. So, Julie, can you tell us a little bit about the Continuum of Collaborative Care model? How it came about and what direction you see it going in in the future.
JL: Sure. I appreciate the opportunity to be able to talk about this. I always say that I could talk about this for days and days at a time so we’ll try to make it short and sweet. The Continuum of Collaborative Care came to be, I think, out of necessity. My background is in developmental disabilities. I’ve worked in the developmental disability field since I could get my working papers, which is a long time ago. When I came to New Hampshire, I still worked running the day program for a little while and then I said I’m going to switch it up. I’m going to come to community mental health and work as a therapist. And try something new. And when I came to the mental health center, the Center for Life Management, I realized we’re not really starting over like I thought. There was a lot of redundancy in services. We were doing a lot of the same things as developmental services but just calling them different names. So, we had treatment plans at the mental health center. They had ISAs, so Individual Service Agreements at the developmental services agencies. We had quarterly reviews – they had quarterly reviews. So I’m sitting there thinking – why are we being redundant? Why are repeating and how many times were people going to have to tell their story over and over and over again? As a family member of someone who is living with a developmental disability, I thought, what is it my family member would want? Would she want to repeat her story over and over again? So, we joined together with Community Crossroads, who is our area agency, we’ve always had a great relationship with them, we paired together and said, where do we overlap? We literally drew a venn diagram. We drew our mental health services on one side and our area agency services on the other and we said where are we overlapping and how can we come together to decrease redundancy and improve efficiency in service delivery for people who experience dual diagnosis? After piloting with thirteen individuals over ten years ago now, we’ve served probably over four hundred people with dual diagnosis. The goal is for people to be seen as people. Pretty much that simple. Let’s not treat people for one diagnosis and send them one place. But let’s say- Hi, Kelly. What are your needs and talk to you about what your individual needs are verses—well, let’s talk to Kelly about her depression or Kelly about her autism—but really, what makes Kelly, Kelly. And that’s the important piece. So, we’ve had some great success. Community Crossroads is imperative. Jen Chisholm is their Executive Vice President and she’s my partner in crime over there. But working for two agencies that have been so supportive to make sure that we’re looking at whole person approach to care has really been important. So you asked about the vision. The vision is for this to be the expectation and not the exception. We don’t want people to get differences in experiences based on where they live. We know that we live in a great place, in New Hampshire, we want there to be a quality in service delivery across the state of New Hampshire. So with the Continuum of Collaborative Care model, offering trainings and support, we’re hopeful. We’re hopeful that we will be able to achieve that with our continuing partnerships.
IRL: It sounds like it’s almost a no brainer. For so long systems have been so siloed in New Hampshire and it’s thinking about trauma informed care for example. And how frustrating it can be for people to tell their story over and over again. Especially if they’re having negative experiences or they feel like people aren’t hearing what they’re saying or aren’t addressing their needs. You talked a little bit about that too, Kelly. About people hearing what you’re saying and giving you what you’re asking for instead of skirting around your needs, your person centered needs are. You definitely have talked about how important it is to be person centered. Can you tell us a little bit more about what person centered services mean to you?
KE: Person centered services is seeing the well me, like we talked about, the mental health and also the developmental disability aspect of my care. And also I’m part of New Hampshire Developmental Services Quality Council and we have a subcommittee which you don’t have to be on the Council to be part of the committee, but we’re doing person centered planning and bringing it to state and saying you’re not doing it correctly. Because, you say an ISA is person centered, Individual Service Agreement, but it’s not. It’s not like me choosing my goals, or me choosing a methodology of how I meet that goal. I’m actually going to have one in December and we’re writing my goal—I said, I want a work goal. And I want a self care goal. I want to incorporate yoga into my Individual Service Agreement, and I also want to integrate my business that I have that with my four jobs I want to be able to keep track of my money better with my business income but concentrate on that. Not necessarily my personal finances because I think I have those down. But, making sure – I’m on contract with different places, make sure I get paid when I’m supposed to be paid and that sort of thing. I don’t want to not get paid for my work and then they would just tell me why they haven’t paid me and not actually say ‘we’re sorry’, this is when you should expect payment. IRL: Would you say in your experience that the ISA process is from a strength based perspective?
KE: No, it’s not. It’s actually like, what can Kelly not do? Because I was reading it and she said something, my service coordinator said that because of my taking on my fourth job, that I’m getting more disorganized. I’m like, well that’s not true because I didn’t get my fourth job until November 15 and she’s writing this before November 15. I don’t feel like I’m getting less organized as I’ve taken on new jobs because in September 2022, I was actually working four jobs because I was working with the Institute on Disability on the Dream Big project, training DSPs about giving their client’s choice, that was the IOD was one job. I worked for the Developmental Disabilities Council with Isadora on the Dream Big job. I had my Marshalls job and I had my Bureau of Developmental Services Quality Council job. So, I wasn’t disorganized then. Everyone that knows me or sees my apartment I’m jealous because of how organized you are, they say that. Or like people when they nominate me for awards, she’s very organized. They don’t say she’s a mess. She’s got to clean up her place, or something like that.
IRL: You definitely seem like you have your stuff together.
KE: That’s what everybody says. Or how do you do all that you do with your four jobs.
IRL: It seems like you prioritize really well and you have a lot of strengths to bring to the table. It’s unfortunate that service agreements seem to focus on what people can’t do rather than developing the skills that they do well.
KE: Like my service coordinator wanted me to do yoga at home. I said no, take that out. Delete it. I’m not doing yoga at home. I take a class a week and I want to be out with other people when I do yoga. Not just do it in front of YouTube – yoga by Adrian – or whoever. I want to do it in a class. The teacher can see if I’m doing it correctly or not. And other students are there, not that I talk to them or make friends with them, but at least they’re there and I’m there. I’m out of my apartment.
IRL: That’s fantastic that you’re able to really be an advocate for yourself in that way. And did you get yoga?
KE: Well actually, the Bureau of Developmental Services refused to pay for yoga, but I applied through the Harry Greg foundation and I got a ten class pass, which is for ten classes and it’s good for a year. And then they had a black Friday special, which I found out ‘cause I went to the class on Saturday, after Thanksgiving so I bought five class by my money. I got twenty percent off so I paid twenty percent less than the regular price and I have six months to do the five classes and a year to do the other ten classes. And if I take a class a week, that should take me about two and a half or three months. IRL: That’s fantastic.
KE: Next time I’m going to do better. I’m going to ask for twelve unlimited monthly passes which are eighty-eight dollars a month and only take a class a week, ‘cause I can only do so many classes because I can only take gentle yoga because I have a heart condition. So I can’t be doing extreme or vigorous exercises and things like that.
IRL: Wow. So, I love your story Kelly because it really highlights and showcases how when things are important to you, you can advocate for yourself. You can push people, even when you have someone say no, to have the tenacity and creativity to go to someone else and say this is something that I really want and I really need it for my health. And, how can I get it?
KE: Yes. My therapist wrote a letter and my primary care doctor wrote a letter and it just wasn’t good enough for BDS. They wanted something from a physical therapist saying that I needed yoga and that it was medically necessary. They can’t do that without losing their license. So I said well – it’s like a road block—I have to get over the road block or around the road block, so I did. It’s a grant.
IRL: That’s fantastic. So Julie, when the Continuum of Collaborative Care model is working well, what does that look like for people? JL: I love that you said working well. Because that is what we focus on. The questions that you were asking Kelly, I’m sitting here saying – don’t jump in! don’t jump in! Because the very basis of the model is asking people what’s going well. It’s really, really important, and so when we’re doing our training, we say we’re going to kick the “how are you?” to the wayside. And so when we first greet people, not how are you, but, what’s been going well since the last time we met? Taking a strengths based approach is really important. If we start to focus on what’s going well, you’ve already identified skills. It is about modeling for our community partners. When I say our community partners, we identify those folks as our direct support professionals, our home care providers, natural supports -- family members, neighbors, your yoga instructor. Anybody that’s important. But when things are going well in the Continuum of Collaborative Care, the individual and the teams are doing the work. We really want this to be a client centered, or a person centered, team based model. So the individual that’s in services is at the lead of their team and that’s exactly how it should be. They may be working on a certain skill set, whether it be in therapy or functional support services or any of the many services we provide at a community mental health center. But then, being in a teaching role to their team and saying, here’s what I’m learning about my symptoms. So we’re doing teaching about mental health symptoms, but being in the teaching role to help their teams learn what mental health symptoms look like and feel like to them. What warning signs and triggers might look like or feel like to them. And then, most importantly, what skills are we utilizing and how can teams support those skills. Because what I do in the four walls of a therapy office, that’s really hard if it stays in those four walls. But I’m more likely to work my skills with the support of a team. So even with me at home, I’m more likely to work my skills with the support of husband, my mom, maybe even my kids telling me what to do because they like to do that. But it’s not about telling me what to do. It’s about prompting me, encouraging me, recognizing what a great day looks like. And recognizing what a not so great day looks like and maybe having the tools of how to support me and encouraging me with how to make that better. So I think what it would look like for the Continuum of Collaborative Care to be going well is for teams and individuals to be on the same page for wellness and for a positive future. For everybody at the table, I always think of an ISA – an Individual Service Agreement – and how many people can be at the table. What it would mean for the Continuum of Collaborative Care to be going well, is for every person at that table to understand the hat that every other person at that table wears. So if Kelly were to come in and talk about that employment goal, everybody there says I understand that my role as Kelly’s therapist is to help her with symptom management to get to that employment goal. And her service coordinator’s job is –and everybody will understand the role of everybody else at the table so we can pass the baton. But also work in complete cohesive partnership all with Kelly at the lead of the team. So, we’ve had some great success. Like we said earlier, the goal is for that to be the expectation in New Hampshire and not the exception.
IRL: It definitely sounds like it reduces duplication of services if everybody’s in the room and on the same page and taking a piece. And that the individual is deciding who is going to support them in what way in the community as well. Because they know an important part of being inclusive is that we are always looking for natural ways that we can build our social skills, our teams and people with similar interests and passions. That is really amazing.
JL: It’s been a situation where we’ve seen the individuals who’ve participated in the Continuum of Collaborative Care model really shine. They have found their confidence because they understand their symptoms in a better way. Sometimes people would come in and not understand what anxiety is. They would show their anxiety but they didn’t have a word to put to it. We have a lot of people that would come in labeled as having [inaudible]. And one of the things that we specialize in is clinical behavior work. And that really is unique and I am disappointed to say it’s unique because I don’t think it should be unique. But clinical behavior work is focusing on the whole person. So, how do mental health symptoms impact behavior and vice versa. So understanding that when any of us feel anxious or depressed, our behavior will change. But for you or I, we might not be labeled as behavioral, we might be understanding of our mental health symptoms. But unfortunately, for people who are living with intellectual and developmental disabilities or acquired brain injury, that’s not necessarily the case. We place far too many labels. So we’ve taken a clinical approach to behavior services and we have clinicians who author behavior plans. Our goal is to look at the whole person. When we see the outcomes, we see clients who have found their voice. And at times, we’ve had individuals who don’t want to talk about their disability. Don’t want to talk about their mental health diagnoses. And that is absolutely ok. And then they’ll come forward and say, this is something that I’m proud of. It helps explain who I am and what I’m experiencing. But it doesn’t change how you should treat me. And they have a voice.
IRL: You’re giving people the tools and resources to really develop a language to communicate how they’re feeling. To be able to identify their own feelings and also tools and resources for them to work on symptom management themselves. I know that when I go to a physical therapy appointment, my first question is I want you to show me what I can do at home to identify when things are getting bad so that I can build the skills that I need so that I don’t have to come back here. And so it is about identifying the symptoms and finding a manageable plan for however I can address my own needs to be able to do that. And if I need help from other people, and professionals that I know where they are, how to ask for that help, and that prevents more serious conditions in the future.
JL: It does. It has drastically impacted our numbers for psychiatric hospitalizations and emergency services utilization and it’s really because people are on the same page. Everybody is working, they’ve identified the plan because our individuals identify their plan. We do what’s important to the individual, not necessarily what’s important to the team. At the end of our sessions, so we often use a model of therapy that we call bookends therapy and it is the support system coming in at the beginning and the end of session with a ton of autonomy right in the middle. And when we’re wrapping up that session, besides what’s going well, the most important thing to wrap that up is asking our individuals, what was the most important thing we talked about today? That often gets missed. What I think the most important part of that session is and what they identify the most important part as, those might be two different things. Their take-away is the important part. And from that take-away, we can then share that with their support system, whoever that may be. And they identify who that support system is. But we can then plan to share that and then the individual, based off of their communication or their desire at that time, but they can share that with their support system. And when they are doing the sharing, you get the buy-in. Because it doesn’t become “Julie said, well Julie said you need to go for a walk when you’re pacing”. Then that’s punitive. You didn’t do what Julie said. It’s not about what I am saying. It’s “hey, remember last week when we were in Julie’s office? You mentioned when you were pacing it’s gonna be helpful to go for a walk. Wanna try that?” We’re doing everything with a client centered approach. It's going to improve buy-in. We’re going to be able to better assess insight, know what we have to work on next time. And most importantly, help people have a voice. And we’re taking therapy to a next level. Therapy for us is not just individuals that can participate in talk therapy, or sit here and chat like you and I. We utilize communication devices. A lot of our therapy is done sitting on the floor and playing games and sometimes is doesn’t feel like it’s that traditional therapy. But it is the most beneficial therapeutic work I have ever done because remaining people where they’re at, we’re getting creative. We have white boards on every wall – we’re drawing away! It really is just such a blessing to be able to do this work and help people have that equality of service delivery.
IRL: So, Kelly, I know that you went to a training, supported in part by the DD Council, where you learned about the Continuum of Collaborative Care model. And I know that you immediately wanted this model in life. So, what stood out for you about the Continuum of Collaborative Care model? Why have you be become such an advocate for it? KE: I think I’m such an advocate for it because I went to the three day training. I was the only person that had services through the DD Council or services through the Bureau of Developmental Services on the DD waiver. But I realized, basically in the last [inaudible], how do I get this in my area? We don’t have this where I live. Why do we not have this where I live? I want it to come to where I live. I shouldn’t have to move to Salem just to get this model. I have family here in Londonderry and things like that so I’m not just going to pick up and move. When I have a sense of community where I’m at in Nashua. And I asked my service coordinator, do I have clinically informed service coordination. And she asked, what is that? She doesn’t even know what it is. We’re obviously not doing it. You mentioned same page, same team. I was actually in the Stepping Stones and that was the name of the article. I think they spelled my last name incorrectly, but that’s ok. I want other people to know about it. I was interviewed for that article and Julie is actually going to be going to my individual service agreement. She is not my therapist, but she is a therapist. So my therapist is also going to be attending. Someone from PLUS is going to be attending and someone from PLUS said, well how many people are going to be there? I said, I don’t know. It’s probably going to be a lot because my service coordinator is like, how many people have you invited? A lot of people because I want my supporters to be there. And we’re going to have it on Zoom because it wouldn’t be appropriate for my therapist to come over to my apartment and have it in my living room so that’s why we’re having it on Zoom.
IRL: And again, it speaks to you identifying something that seems to be working somewhere else and saying I need that too, and advocating with the people that you need to to be able to get that.
KE: At first they said I couldn’t get Continuum of Collaborative Care if I was in participant directed managed services. I said, that doesn’t make any sense. Because participant directed managed services means that I get to choose my money. I get money say from the Bureau of Developmental Services through my DD waiver. I choose to spend it on yoga and they decided to not spend it on yoga. But I can choose to maybe get a grant for yoga or maybe go to Isadora and get a grant so I could learn computer skills. Or go through, I’m actually working with vocational [inaudible] to get Microsoft application skills, so I could learn that. Yah, I’m gonna learn that. I still need to learn now to open a Zoom meeting and to close a Zoom meeting. ‘Cause sometimes we have trouble with that in People First.
IRL: Those are all great skills to have. And I think that one of the benefits of having a model like this working in your life is that you have all the people that have the resources and the information that you need to bring your ideas to fruition. And I think that’s what this is all about. True person centered services is about individualized needs and not, we can’t do that, but how can we do that?
KE: Right. I was kind of surprised because it seems like the opposite of what participant directed managed services is. You’re in charge of your services, not the traditional models. You’re not in charge of your services. Your service coordinator is. And at first I wasn’t allowed to be on participant directed managed services because I’m so interdependent, I don’t like the word independent. I didn’t have enough money in my budget to pay for the portal for participant directed managed services.
IRL: Oh, that’s interesting.
KE: I was like, oh, how do I get more money? I have to figure that out.
IRL: I really want to take this opportunity to thank you both for coming on the podcast and talking about what quality services can look like for people that have developmental disabilities and co-occurring mental health conditions. I do think, I appreciate Julie, what you said about the model kind of arising out of the need that you saw. And I definitely have seen that need. And I am definitely an advocate for this model being implemented statewide so that no matter where you live, you can get these whole person, wrap around person centered services provided to you in a way that is meaningful for you and for whatever, whomever the people in your life are at that time. Is there anything else you want to share before we close?
KE: No. Advocate for yourself and others. ‘Cause some people say that people with autism only think of themselves. I don’t think that’s actually true. They do think of themselves but they think of other people, too. They just don’t maybe know how to express it because of their communication difficulties and things like that. That’s what I would say.
IRL: Thanks Kelly. Anything else Julie?
JL: I think it’s important for people to know, I don’t think the statistic is shared enough, that people with intellectual and developmental disabilities are statistically more likely to experience severe systemic mental illness than those without intellectual and developmental disabilities. And I think it’s our responsibility as mental health providers or professionals in the field, to look at whole persons. And know that experiences are real for everybody. We support individuals with acquired brain injuries as well. And there is no harm in doing assessments and asking the questions. So I just think it’s really important that we continue to focus on the whole person. And if we do that, I’m really excited to see what’s to come. And thank you so both of you. You’ve both been such phenomenal advocates with the DD Council and Kelly standing up at the three day training series that we did and using your voice so much since then. So for both of you, I’m just so greatly appreciative and I know Jen is as well.
IRL: Thank you, again, both for coming on That’s Inclusive! And we’ll see you next time.
Vanessa Blais (VB): Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 13: Including Disability in DEI
In this episode, Isadora talks with Ernesto Burden, publisher of 603 Diversity Magazine and advocate for inclusive community spaces.
Learn more:
603 Diversity Magazine
Yankee Publishing
Uninclusive Inclusion: Intersectionality That Forgets People with Disability
Episode 13: Including Disability in DEI
Episode 13: Including Disability in DEI
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Isadora Rodriguez-Legendre (IRL): Hi everybody, welcome to That’s Inclusive! My name is Isadora Rodriguez-Legendre, I’m the Executive Director and The New Hampshire Council on Developmental Disabilities. I’m here today with Ernesto Burden who does a number of things especially around diversity, equity, and inclusion work. Were very interested in learning more about his work and what drives him, and how it aligns with our vision of disability inclusion. Welcome Ernesto.
Ernesto Burden (EB): Thank you for having me, it’s a pleasure to be here.
IRL: I usually like people to just introduce themselves, tell our listeners a little about you and the work that you do.
EB: Sure, sure. I am the publisher of New Hampshire Magazine, New Hampshire Business Review, 603 Diversity, which I think we are going to talk about in a little while, New Hampshire Home, New Hampshire Bride, we host a number of events. In general, we are the New Hampshire group which is a subset of the broader Yankee Publishing operation. The Yankee Magazine, the Old Farmers Almanac, these really iconic brands. We’re happy to be a part of that. I’m responsible for all the New Hampshire brands, the ones I mentioned first. So, I manage that as a publisher, not everyone knows what that is anymore. Everybody knows what the editor does, the publisher is essentially the manager of the rest of the managers and manages the business, like a CEO.
IRL: Your company used to actually work with us on Stepping Stones Magazine, which is a resource guide for those with lived experience of disability. I know that you are familiar with some of the things we have done, and I know you have some questions about some of the work we do currently that we can definitely dive into.
EB: Absolutely. As you and I have talked in the past I think one of the things that’s been really great is how much what you’re able to share as been able to inform what we should be doing with the 603 Diversity Magazine. From disabilities perspective, which I don’t think is the first thing that people think about. Its an interesting challenge when you think about doing a magazine about diversity anyways is what you think that entails cause in some ways it entails everything. Like every one of us is this sort of plethora of diversities in terms of our social background, our religious beliefs.
IRL: All the intersections of our identities and how they play on each other and form these very unique people who are now walking around with people who have their own unique perspectives, and we call that a community right. We have to figure out how to not offend each other and how not to trigger, for example, traumas, or trigger oppression in any way, shape, or form, that can perpetuate stigmas and inequities that exist in society, so I definitely appreciate that. I think we were talking about how with 603 Diversity Magazine I had appreciated the openness to including accessibility and addressing disability as part of diversity, equity, and inclusion, which is something we are actively, continuously trying to drive to communities that are working in DEI spaces. So, I definitely appreciate that not only did the magazine highlight disability in some issues, but you seem so much more conscious of that disability piece in all the work that you do.
EB: I think that one of the things that comes out of a magazine culture is that we are, I hope, story tellers. In order to do that I think we have to pay attention and see things. Typically, not always things from your perspective. I’m always grateful that when you reached out, I have a copy of the essay you wrote for the magazine a couple issues back, I actually underlined some things that I wanted to share later. One of the things that we knew right out of the gate when we launched the magazine is that we would not get everything right. I’m not even sure there are right answers to how to do what we are trying to do with this. We had to go into it comfortable that our intentions were good but that we were going to misstep. Like not mention something we should or mention something we shouldn’t. Its interesting that you had mentioned, just now, the care that we take, as the culture moves forward, to be empathetic and thoughtful and careful how we treat other people and not triggering other peoples’ traumas and that sort of thing. In addition to that, cause I think all that’s right, but then there’s also the piece that I think we also have to look at our reactions, and try to react to things as though people, even when they make mistakes, are making mistakes with the best of intentions. I’m not sure if I’m saying it well, but that idea that if everybody started with the baseline that I’m going to be really careful, but also that you’re going to give me the benefit of the doubt that even if I said something that might have hurt you, I didn’t mean to, and then you’re going to instruct me and just let me know.
IRL: To come from a place of presuming good intentions and I think that is so important in our work. We’re all in it for the same reason, we all want to see a better world than we came into, or trying to make the world a better place in some way, shape, or form whether its sharing information, or creating systems to support people the way they need to be supported, or building the capacity to really have people participate in a meaningful way that have been excluded in the past. I think that we do, we have to presume that we are all coming from a good place and are going to have missteps along the way, and that’s just reality.
EB: I think that allows the conversation to happen. I mean maybe not everyone is always coming from a good place, some people are just mean, but I think a lot of times people are. I think that to have a conversation everybody needs to feel comfortable enough in that conversation to be willing to misstep, cause otherwise you don’t talk at all.
IRL: Yes, you have to be willing. I know I’ve talked to you about my anxiety and my kind of, overcoming, my own, I guess, feelings of inadequacy and I think that is so true and it makes it okay to not know everything, right? It makes it okay to come from a place of curiosity and to say tell me more about that, you know? I didn’t see that perspective before, but now I can consider it as part of the information I am using to make a decision. I think that so important for people to not just be the experts all the time.
EB: Yeah, not only is it important, not to say anything too forcefully controversial, it seems like the only right perspective to me. Most of the time, if I’ve met people that are absolutely 100% confident of their every opinion, they’re usually wrong about everything. Of course, that reminds me you always get into a bind when you start making statements like that because if I said everybody whose 100% sure of everything or says they know something for certain is absolutely wrong, its like that line in one of the Star Wars movies when someone, I think it was Yoda, says only the Siths deal in absolutes, everybody of course pointed out that’s kind of an absolute.
IRL: No, that’s awesome. So tell me a little bit more about 603 Diversity and kind of how it came to be, and what you hoped to accomplish with the magazine.
EB: Well, this launched in that post-summer of 2020 and one of the things that was happening everywhere was that companies were making diversity statements. And sometimes they seemed really well intentioned and good and sometimes they seemed like lip service. What occurred to me was that the risk always was saying more than you meant or should say on behalf of the company that’s made up of a bunch of diverse people itself, or not saying enough. So the risk was that you end up with a very adenine statement that doesn’t really say anything other than we’re good. So we thought that it would be good to put out something that, rather than making our statement about how we feel about things, we wanted to put out something that said something on behalf of the communities that we were talking to and about and let them say what they thought about things. We wanted, essentially, to create representation.
IRL: I really think that you’ve done that. Having seen the pieces and the contributors, they’re really, like you said, telling their stories, and it really has an impact because we can feel that connection. And then also recognize the sometimes unique experiences that people are having while we are making our built in assumptions that we walk around with every day and how its just important to lift that veil sometimes and remember that people come from different experiences, different backgrounds, and it’s important to recognize that and celebrate it. Its important to really have that warm invitation. I always talk about that in disability inclusion is that being a champion of diversity, equity, inclusion, and accessibility, isn’t just about saying those things and creating spaces that are accessible, its also about creating a feeling of welcoming, a feeling of belonging and that’s kind of an extra step that a lot of businesses, a lot of agencies forget to include in their work. Its not just about changing your mission statement and making a declaration, its about how do we actually make people feel like they belong?
EB: I’ve noticed that’s been added to a lot of those DEI mission statements are now DEIB. How do you think that people are made to feel to belong. From the perspective of somebody in a leadership role in a business, it almost seems like, there’s really obvious ones like you listen to people.
IRL: Right, you ask them what they think, and you reflect their inputs in your actions. That is one of the biggest ways to say that we’re listening and what you’re saying is important, and we’re going to make a change based on that. That’s one of the biggest ways that we can do that.
EB: What are some others, especially in the disability community?
IRL: I think that the disability community its really important to seek out information because not everyone with an intellectual or developmental disability is really able to communicate or explain the nuances in behavior or what their needs are in terms of sensory needs. We have gotten in the habit of, for example, including, in our conference planning and collaborations, to make sure we are having sensory safe spaces. So if someone is just overwhelmed, even if visually or audially, they can check out. They can just go to a roof with maybe dim lighting so they can just reset. That’s so important to helping people who have sensory differences feel like they belong in those spaces because now you’re intentionally including supports that they need to be able to stay for the whole day. Which didn’t really happen in the past. Things like that, things like making sure parade routes are accessible for wheelchair users, things like that. Its really informing yourself about what some of the needs people with disabilities might have, even if they’re not able to communicate that effectively. Another thing that we’ve gotten in the habit of doing is offering ASL interpreters grants for different events and activities so that people who are deaf or hard of hearing can also feel like that belong in that event or activity because they’ll be able to now understand the speeches that are being delivered in that event. So its those little things, its really kind of educating yourself about what the different support needs might be of a person with a disability and just building that in without asking.
EB: Is getting that information out a big part of the challenge? It seems like, if thinking logistically about the example you just gave, you have a grant go towards providing somebody to do ASL translation for an event, but people need to know that event has that. They don’t have to know to show up at it, but maybe there are people that would show up if they knew. How do you make people more aware? That maybe goes back a little bit to the point of this magazine and even the work we’re doing in our broader magazines. I shouldn’t leave them out because we, as a company, both our New Hampshire group, Yankee, and the Old Farmers Almanac, have spent a lot of time talking about what inclusion looks like in the pages of our other magazines as well.
IRL: I think that, going back to how we started, its about asking the question. Its about making sure that in conference registrations, or in event development, that you are putting something out there. Some sort of statement that says that if there is some sort of support that you would think would improve your experience at this event or this activity, let us know. That we are open to hearing what your needs might be for making this an inclusive, welcoming space for you. You’ll see it a lot now these days in conference registrations at the bottom, it’ll say do you have any accessibility needs, if so let us know what they are. We will try our best to accommodate those. I that asking those questions whenever we can, when we’re planning different events activities is really giving that sense of oh they really do want to hear what my thoughts and needs are, and they’re willing to accommodate that.
EB: I think that’s great. People who are listening can’t see, but you can see that I’m writing this down. That feels like a thing that we could do. Its not difficult, its not expensive, it can go right into a post event survey. Were there things you needed or that you could have used?
IRL: How could this conference have been more accessible for you? Or felt more welcoming for you? And that could include beyond disability. Something that somebody might have needed whether its language translation, or materials in different languages, I think that it’s really easy to forget that someone’s experience is really going to be impacted by not having the supports that they need in order to be able to engage the same way as other people.
EB: What are some things that come to mind when you think about storytelling that could help to illustrate that? IRL: Storytelling in the disability community is one of the biggest vehicles that we have to really send our messages and drive our messages home especially to folks that don’t have a connection to disability. I think that stories are so important. One of the things that we are doing at the Caregiver’s Conference, which is coming up next month, is we’re supporting one of Council Members to collect video stories. She does a lot of advocacy work and especially in different types of media, she’s one of the coproducers of this podcast, her name is Patricia Vincent Piet. She’s a person with lived experience of disability. Her husband also has a developmental disability. It is so important to have folks that have that lived experience share their stories and help people who don’t have that connection, understand how meaningful it is when they’re included, when they’re thought of, when they’re asked. Those important questions of what is that you need. EB: Is there a follow onto that where people with lived experience shared those experiences, but then people who live with those people with lived experience. There was a TED Talk, TEDx Talk, in Lowell, that I jotted this quote down from because I thought it was really relevant the storytelling idea. Have you ever heard of somebody named Becky Curan? She’s a motivational speaker, professionally I think, and a little person. She was giving this talk, she was talking about she worked in film out in Los Angeles for a while. I hope I’m getting that right because I didn’t write that part down. So if she worked in film somewhere else, I think it was Los Angeles. Anyways, she worked in the media. There was somebody that was a high level executive in the organization she was at, who, it turned out had grown up with somebody with a serious disability in terms of mobility. She said, of him, as she closed this talk, she said “he had a disability story, but not anybody else in the company knew that story. I want more people to be able to hear these stories so that we can all realize we can relate in more ways than we think we can. We are all on this Earth together and we all want to be a part of it and just be appreciated and accepted.” I thought that was a great way to get it. Again, what we’re trying to do with 603 Diversity as a magazine is as a storytelling device.
IRL: And that’s one of things we’re trying to do with the Caregiver’s Conference because its all about both unpaid and paid caregivers. We have parents that are getting older that may need supports and may develop disabilities as they get older. We have family members that may have an accident. If someone breaks a leg, at least temporarily they’re going to need additional supports from their family, from their loved ones, from their friends, their community. And so really understanding that disability is a natural part of the human experience and that we all can have, at one point or another, a connection to disability, including ourselves and our loved ones. Understanding that does connect us in a lot of ways, even if we don’t think of it that way, we don’t think of people who aren’t born with a disability, living without a disability for their whole life. That’s the reality, we all experience disability at some point in our lives and have connections to loved ones and family members that we can recognize and that we can take a look at the world and say, “oh wow, this really isn’t accessible for them, or for me in this current situation. We really need to be looking at more universal design in every space so that no matter if it’s a disability, or a single mom with a stroller, we use that analogy for universal design.” When you create spaces that are accessible for people with disabilities, you’re actually creating a space that’s also accessible for anyone. Older adults, someone who has a walking disability, someone who has a visual or hearing impairment. That actually makes us come together and recognize that we have more in common than we have different.
EB: What kind of pushback do you get when you’re talking about that? I can imagine that there’s an argument that somebody might make. An ad absurdum argument like “how universal could you possibly make things?” You know, one of those. Of course, it also occurs to me the flipside response to that having a rope and only those who are strong enough to climb it using upper body strength is the only ones allowed to come in. I don’t know. But does that happen, that sort of ad absurdum?
IRL: I think more often than not, what we see is sheer denial. “That’s never going to happen to me” or “I don’t have that experience”, “I can’t put myself is someone else’s shoes”. Really, until you have that personal connection, sometimes that Mack truck in your face, its like “oh yeah, that means me too. I guess I’m not excluded when we talk about potentially people having a disability or a connection to disability in some way, shape or form,” A lot of our storytelling is driven around that. Is driven around just educating and informing people that we need to look to each other to be able to get the examples of what we could be facing in the future. I’m a person who, my parents are getting older, so I start seeing that they have different needs. So, I recognize that, especially in New Hampshire, where you have to drive everywhere, that’s not really, for an older adult, who is no longer able to drive, how are they accessing the community now? What are the supports available to them? Thinking about it in those terms sometimes helps come around to the “oh it’s not just about disability, accessibility is about accessibility for everyone who just has a different need at any different time in their life.
EB: That makes sense. And I do think it again underscores the need for and the power of storytelling because a lot of times, you said denial, and that’s something I think you run up against in all types of DEI situations. I know with the magazine I get criticism in form of letters and emails and stuff, mostly letters, often with no return address. When we first put this out, somebody ripped up a copy, and put it in a mailer and sent it to me. But a lot of the pushback, I try to think about what’s happening with somebody who has the kind of reaction to it and some of it is that denial. A very specific example would be more than one letter writer has written saying there is no racism in New Hampshire and by putting this magazine out, you’re creating it, by being divisive. I am happy for them that they’ve never experienced it or maybe they live in a place that’s so homogenous that that doesn’t happen, but the practical lived experience of a lot of people would counter indicate that. I could write back and say, “there absolutely is, here is what the statistics show. Here are the hate crime statistics or here are peoples’ personal stories, here are my personal stories.” But that’s not going to change anybody’s mind. Facts, arguments, I think you need to have them. What seems to really change peoples’ mind, is I think you need to change peoples’ heart first, and this isn’t unique to me, I am trying to think about who said it, maybe it was the business writer Simon Sinek, who wrote The Power of Why or something. I think there was an example in that book where he was talking about, we usually make decisions based on our gut, or our heart, and then we rationalize them. Thats why its so hard to argue somebody out of a position with facts. If you’ve ever sat and just tried to a fact based argument with somebody, nobody ever backs down. I shouldn’t say nobody, only a Sith would say nobody.
IRL: The experts.
EB: You could go back and forth all day. This is how arguments on the internet work. This is why I don’t argue about anything on social media because its just one long string of people throwing their experts and their facts at the other person until the end of time, and nobody ever changes their mind. I think that stories can change peoples’ minds.
IRL: That’s a great takeaway just from this conversation. And again, I think in the disability community we’ve really found that helping people get over their particular hump or their particular firewall to understanding what someone’s needs are or what a disability is, is by people telling their stories of adversity, of overcoming obstacles of the systems that exist that continue to exclude them from civic engagement, from community participation, from all of those things, from schools, from learning. We’ve talked about learning before and how important it is that people have educators that really believe in their ability and who come from a strength based perspective of learning. I think so much of our educational system doesn’t do that, and puts people in these boxes. I think that we’re going to start to wrap up, I wondered if you had any other takeaways or any other hopes for what some of the diversity, equity, and inclusion work that you’re doing is going to accomplish here in New Hampshire, and how we can help.
EB: Well, some of the things we hope, obviously, we hope that the magazine is going to continue to provide representation, because I do think that’s important. Representation is important and often not understood well. I think everybody has experienced not being represented and “not belonging” across the board. This is one of the reasons I think its important to share stories in general, not just in this magazine. Storytelling is such a powerful thing that as people begin to tell their stories, they do find how much in common they have, regardless of their backgrounds, and regardless of which community they come from or anything else. But there’s this idea of representation, whether its ethnic, or racial, or the disability community, its important to see yourself in media, in stories. One of the other criticisms we’ve gotten, I’ll tell you all the criticisms. They’re all interesting points. I got a letter that said, “why do you have to do this separate magazine, why don’t you just put diverse people in your main magazines?” And we do, but the answer to that question is I was rereading the column you wrote for us; I saw something that I think really eloquently gave an answer to that. You said, “when I moved to New Hampshire, it was harder to find “my people”. There was far less cultural and linguistic diversity visible in our state, so I had to intentionally seek out spaces where people were celebrating their cultures.” That’s, I think, what we’re trying to do here, is not create a rift, but to point out something that the community in general might not be aware of. Like if you go outside of New Hampshire, New Hampshire has a reputation of not being diverse. In some places, it has a reputation for being intolerant. I don’t think that it lacks diversity, and I don’t think that the state lacks tolerance. I think it doesn’t get those aspects of things pointed out enough. So, I think a vehicle, like 603 Diversity, is a good tool providing representation for diverse communities in the state, but also for letting people know outside the state, including business that might want to move here, including people who might want to move here to work, including young people who we would like to stay here as opposed to leave to go someplace more diverse, that this diversity already does exist within the state. So that’s an opportunity to showcase that. I think its good for the culture, I think its good for business, I think its good for both of those things.
IRL: I agree completely, and I want to just echo that including people with disabilities in discussions about diversity, equity, and inclusion add to that, and it adds to the visibility of that being part of our landscape in New Hampshire, and this being a potential untapped workforce for example, that more businesses need to explore. Its important that we take into consideration, like we were talking about, what their needs are, in order to be contributing, productive members of society, which is what everyone wants.
EB: I look forward to talking more about this. New Hampshire Business Review has done a DEI from talk to action series of morning seminars over the past couple of years that have talked about the impact of DEI in business and on businesses. You and I have talked about the next one really having a focus on disabilities and the opportunity that exists there for both the disability community, but also for the businesses that are struggling to find workers.
IRL: Absolutely. I think that it’s a huge pool of untapped resources in our state and that everyone would benefit from just being more inclusive in their hiring practices and having some built in supports and services for people who can do a good job, and just might need a little bit of help to do that. Well thank you so much for coming, this has been a wonderful discussion, and I look forward to working with you in the future. Especially, I am looking forward to the DEI talk to action focus on disability next year. Thanks again for coming.
EB: It was a pleasure, thank you for having me.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez-Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 12: Voter Access
In this episode, Vanessa and Chase talk with Disability Rights NH attorney James Ziegra about the good, the bad, and the ugly picture of voting access in NH.
Learn more:
DRC-NH
Know Your Voting Rights
https://drcnh.org/know-your-rights/know-your-voting-rights-a-toolkit-for-voters-with-disabilities/
https://drcnh.org/know-your-rights/know-your-voting-rights-one4all-accessible-voting-system/
https://drcnh.org/know-your-rights/know-your-voting-rights-absentee-voting/
One4All Accessible Voting - YouTube (produced by Future In Sight)
Democracy Live
The Condition of Voting Accessibility in the Granite State: A Voting System Audit Request
Episode 12: Voter Access
Episode 12: Voter Access
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
VB: Today we have a very special guest, James Ziegra (JZ). He is an attorney at the Disability Rights Center New Hampshire, and he is our “go to” for voting rights and voting accessibility. And we also have Chase Eagleson (CE), who is the Policy Assistant at the DD Council and he just finished writing a paper that is a call for an audit for voting accessibility. We’re happy to have James here today to talk with us about voting accessibility here in New Hampshire, what we have that is working and what we need to do to make voting more accessible.
JZ: I’m happy to be here.
CE: Let’s jump right into it. I think it’s important to start by just talking about the history of all of this. So, why don’t you tell me a little bit about voting accessibility in the Granite State?
JZ: It dates back to the Rehabilitation Act of the 1970s and then in 1984 the United State Congress passed the Voting Accessibility for Elderly and Handicapped Act and that essentially gave people the right have to have somebody come into the polling place with them, have an assistant. As long is it wasn’t a boss or a union representative, they could have anybody that they wanted. Before that, A lot of times they were disenfranchised from voting. The big game changer came after the 2000 election, that was the Help America Vote Act, HABA, that gave people a private and independent right to vote accessibly and it came with a lot of money attached, too. Congress basically said that we want to make sure that we can reduce as many barriers to accessibility in voting as possible and they passed the Help America Vote Act so all 50 states and Territories got money to help reduce barriers preventing people with disabilities from voting. The neat thing about HAVA is that every state got to spend the money as they wanted to. In New Hampshire, what we did at first was develop the phone fax system where somebody would go into a polling place, they talk on a fax machine and a phone and the ballot would come faxed out to them and they turned that in. There were a lot of problems with that in terms of accessibility because they would have to disclose who they were voting for to the person on the other end of the line that was filling out the ballot for them. But the people at the polling place didn’t know how they were voting. So, that got scrapped and in 2016 the State of New Hampshire introduced the One For All system, which is an accessible voting system. It’s a ballot marking system which is basically a tablet computer that has a keyboard, headphones, a microphone and a printer. It’s designed to eliminate barriers for people who are blind or visually impaired. If you’re blind and somebody hands you a paper ballot, it’s not going to do you a whole lot of good. You’re not able to fill it out by yourself. So, the One For All system, introduced in 2016, when it first came out wasn’t that great, there were a lot of problems with the synthetic voice, announcing the names of the candidates correctly. So our office in conjunction with other voting rights advocates worked with the Secretary of State’s Office to increase the quality of the synthetic voice, they re-did the programming and they vended out the software to Democracy Live, who programs the ballots and the experience is a lot better than it was before. It's still not perfect because there’s no way for people who are blind or who have vision impairments to physically verify their ballot. So, they select their choice using a keyboard, work with hand controls, and when they’re done voting, it prints out on the same ballot that everyone uses. The problem is there’s no way for them to look at that and verify that the printer selected the right candidate for them. We found that it’s pretty accurate most of the time if it’s set up correctly. That’s a big caveat that I’m sure we’ll talk about later. It’s come a long way. And then the last piece of accessible voting in New Hampshire happened to coincide with 2020 pandemic. As everybody knows there was a lot of fear about voting in person and gathering in big crowds And so the Secretary of State’s Office and the Attorney General waived the requirement for that. Normally, you have to have an excuse to vote absentee in New Hampshire, but in 2020, they said anybody who wants to vote absentee can vote absentee. That’s great. It’s an absentee ballot that’s a piece of paper. And, if you’re blind or you have a vision disability or a print disability and you’re not able to mark a piece of paper independently, it doesn't do you much good to be mailed a piece of paper. The Secretary of State’s Office implemented a new system that allows people with print disabilities as long as they sign an affidavit that says they have a print disability and they can’t complete a ballot on a piece of paper. They can submit that and then they are emailed a ballot and can fill that out digitally on a computer with a screen reader like JAWS or something like that. They have to print out that piece of paper and mail it back in. It’s not perfectly accessible because there’s no electronic return. A couple of states around the country have that, but the technology’s not there in the Secretary of State’s office.
CE: The discussions we’ve had before about this especially the One For All machine, and also discussions Vanessa and I had with polling moderators, we’ve talked about how the One For All machine isn’t fully accessible, which means it’s not accessible. And, how a big part of that is the failure to set it up correctly. Can you talk about the lack of training around that and why that becomes such an issue.
JZ: Sure. How much time you got? We found in almost every instance where there are complaints with the One For All, that that coincides with a town or city where the moderator or the election official have not attended the training or they didn’t assemble the One For All step-by-step. So the Secretary of State’s guide offers a 1-2-3-4-5 process that you follow through and you have to follow it step-by-step individually. It’s not like setting up a tv at home. You have to do it in a certain sequence. And if you don’t do it in a certain sequence, things can get kind of wonkie. The printer doesn’t work right or sometimes you just don’t know how to turn it on. But the bottom line is that for folks that don’t attend the training and don’t pay attention to the manual they have been provided, that’s where we see a lot of issues. And, that can cause people some significant delays at the polls. I’ve heard of people waiting two plus hours to have the machine set up properly to allow them to vote. That’s a long time for anybody to wait in line to vote. Certainly longer than anyone in New Hampshire that doesn’t have a disability to vote, would be forced to wait to vote.
CE: Getting back to those trainings, we’ve discussed this in the past in discussions during my research for this paper, these trainings aren’t mandatory which a lot of people don’t get. They’re not just not mandatory, most people just blow them off. It’s just really unfortunate…
JZ: Yah. It’s tough because state law doesn’t require that polling officials attend this training. Now, to be fair, a lot of Town Clerks do, a lot of Moderators do, but not all of them. And they’re not offered all over the state. A lot of the trainings are done in person and it’s not necessarily made available through video. Some is made available through video but not all of it. I’m not sure how much accessibility is a component of that training. It’s sort of like ‘Hey, there’s the accessibility voting booth, there’s a One For All machine, if you guys want to go and take a look at it, knock yourself out. There’s that lack of training all over the state. The other piece, too, is that a lot of people that are working at the polling places on election day are volunteers. So it’s tough for a somebody who’s volunteering their time to do what they think is right and volunteer at the polling place on election day but they don’t have time to go to the training. It’s 45 minutes away and it’s an all-day training, they can’t get time off from work. So, through no fault of their own, some of the people that mean well don’t necessarily set up the system correctly and they don’t operate it and it causes all kinds of problems on election day.
CE: I think it’s important also to point out that in no way is this the Moderator’s fault. The state is not mandating this.
JZ: Absolutely. I don’t mean to impugn the moderators or the Town Clerks, or anybody who’s working at the polling place on election day. They’re doing their best. Especially the last couple of election cycles. It’s been tough. There’s been a lot of threats to election officials throughout the country and New Hampshire and there’s been a lot of animosity toward people that are just trying to do the right thing and make sure the election is carried out as smoothly, as transparently and as securely as possible.
VB: Chase had mentioned earlier when he spoke to a lot of people who were ballot inspectors and Moderators and Clerks- they want the training. That was the number one complaint that they had. Was that they weren’t given adequate training. What’s the resistance that the state has in requiring, if not everyone who is working at the poll that day, but a percentage of them from being trained?
JZ: That’s a good question and I don’t have a good answer to that question. The Secretary’s Office has said in the past that they offer this training throughout the state on a number of different days and in their mind is a lot of opportunity for people to travel to the training and observe it, participate in it. But again, those are for Town Clerks, Town Moderators, people who are really in the loop. It cuts out a lot of people that are just volunteering that day manning the check list. Checking of peoples’ names. They may not know what to do when somebody with a disability comes up and tries to vote and gives their name and asks to use the accessible voting system. We’ve heard of people that are doing the check list – they don’t know what it is. It’s not their fault. They’d like to do it but I don’t know why there is so much resistance to it but it may have to do with New Hampshire being a fiercely independent state. We have a legion of volunteers that do this and it’s a citizen legislature and a citizen operation of the elections. The bottom line is that there’s not enough of the training and not enough people are going to it.
CE: And that brings us to the second part of the question is that everything we’ve been talking about really only applies to state and federal elections. Could you talk about, why under statute a lot of accessibility mandates, especially the All for One machine, is not required under current statute for local and municipal elections? JZ: Yah Chase, that’s a really good point. So the Help America Vote Act that I talked about earlier, elections have to be accessible which means people with disabilities cast a private and independent ballot. The Help America Vote Act is silent on local and state elections. The Constitution in Federal law says that states can design elections however they want so states do it a variety of different ways. Here in New Hampshire what we do is the Secretary of State’s Office runs the federal elections, or the statewide elections. So if there’s somebody for statewide office, like Governor, Senator or members of the US House of Representatives on the ballot, the Secretary of State’s Office is gonna run that election, design those ballots, provide the accessible voting equipment for those elections. Now, for other elections, like for city elections, town elections, school board elections, state law says it’s up to each municipality to design their own system for voting. It’s up to the Town Clerks to develop their own ballots, to set up everything on election day from soup to nuts. And in New Hampshire, we’re kind of a funny state because we’re so old, some towns don’t even have elections when we’re selecting town officials or village officials. They’ll have what’s called a Town Meeting. Which is sitting around all day long, voting by hand or maybe voting once or twice on a secret ballot. But it’s a very different process than what a lot of people who live in larger municipalities would think of when thinking about elections. It’s kind of a unique thing in New Hampshire and there’s old Yankee pride in there maybe-- love the independence of every town to be able to vote the way they want to vote. To be able to set up elections the way they want to. As a consequence of that though, people with disabilities aren’t afforded the same rights to an accessible ballot in those local elections. The One For All machines are available in all the statewide elections, but its’s not available in local elections because it’s housed in the Secretary of State’s Office, it’s property of the State government, not each individual town.
CE: That is one of the big problems that we’ve discussed in the past. We’ve been talking a lot about the problems with accessibility when it comes to the state. As someone who focuses on disability rights and someone who is a specialist in voting accessibility, what are your overall recommendations for the state of New Hampshire to increase voting accessibility in all elections?
JZ: That’s a big questions. So I think at the outset I should say that from a physical accessibility view point, most elections are relatively pretty accessible. By that I mean there’s adequate accessible parking, a clear path of travel, in older buildings where the elections are held, there is signage to go to the accessible entrance. And once you get inside the polling place, there’s usually a clear lane and a clear path of travel set up so the physical infrastructure in each polling place is ok. But again, It’s the training I think is a big piece of it and I’ll break that into two pieces. One is just the etiquette in how to talk with people with disabilities, how to interact with them. And the second piece is the One For All training. In terms of the etiquette and how to talk to folks, we’ve heard reports from people who are blind that poll workers will come up and wrap their arms around them and kind of scare them and guide them when they don’t necessarily want to be touched. Things like that. Or they’ll say, “Ok, you see that accessible booth other there? That’s where you go and vote.” It’s very difficult. Or if somebody is deaf or hard of hearing, they just talk louder. And that’s really not going to make a big difference and that’s not the way you would do things. So that’s a big piece of it. Poll worker training, making sure that they’re following the directions of the One For All is absolutely critical. And, like I said earlier, in places where there’s more training or people receive more training, we hear a lot less complaints. The other things that I think would really help increase accessibility in New Hampshire would be to allow for online voter registration and online requesting for absentee ballots. I think that really would eliminate a big burden on a lot of people, especially if they’re busy and they try to request an absentee ballot or they think it’s too late to request one. Or they don’t know how to register to vote. The good thing in New Hampshire is we have same day voter registration but it would be nice if you could register online. You can see if you’re registered. You can check your registration status online. Right now you can check your registration status online but you can’t do anything else. You can’t amend it, you can’t interact with a local election official to try to change your party status or things like that. CE: I know this is something that actually Senator Gray has been working on a lot, SB 70, that got tabled I believe and I believe he’s trying to bring it back? We haven’t seen it yet – it hasn’t come out. But, that is something they’ve been trying to work on. Unfortunately to no avail yet. All of those are fantastic recommendations. When we had a focus group with voters with disabilities, one of the main problems that was discussed was accessibility led to a lot of people not voting. Studies have found that folks living with disabilities have a lower civic participation rate than non-disabled voters. Can you talk about ways that you think both the state and Granite Staters in general could work or act to increase participation by disabled voters?
JZ: Sure. I’d love to. This is a huge issue because the proportion of voters with disabilities that vote is much lower than the rest of the public that’s voting. And that participation rate has a gap of millions of voters. That’s enough to swing elections any which way. Helping people understand how that would impact elections – I mean, if you look at the NH State House right now, it’s practically split in half, 50-50 democrat, republican. And a lot of those local state reps, those races are decided by just a few votes. There’s a lot of really close elections that come down. That decides the whole balance of power. Who sets the budget for the state for the next two years. And the same thing on the federal level – if you look at the US House of Representatives, it’s really closely divided House. Some of those elections are really close. There was one in Colorado that was decided by less than 600 votes out of hundreds of thousands of people. That’s nothing. That’s less than one percent. People need to understand the impact that they can have when they go out to vote. And by understanding that “Oh, my vote does matter. My vote does count.” It can make a real difference in terms of who the majority leader is, what kind of legislation that gets proposed, and that sort of impact. Educating people about how those law makers can influence your life and not just on the federal level, not just the President, not just on the State House, but in your local town, in your local school board. I mean, you think about who is setting the budget, what kind of priorities do they have. I forgot the town, but last year that saw a local town that the Board stripped like 50-60 percent of the school board budget. Croyden. Just the school budget. Across the board. They basically eliminated public education in the town until the rest of the folks who didn’t show up to vote in the local election, came and they said “we’re not going to do this. We can’t stand for it” and the participation rate in those elections, the local elections, are so low that your voice can be amplified and you can raise issues. You can make your voice heard a lot more than you normally would in some of the larger elections, especially the federal ones.
CE: That is something that I think people miss a lot. These larger elections, in the Senate and the Congress, the President – those are the ones that are more publicized because they’re national. But school boards, planning boards, all those, they have the most direct impact on the individual by far. They decide which highways get funded. They decide if a school gets funded at all. They decide if the police station gets a new car. They decide if you’re allowed to have a certain type of tree in your yard.
JZ: In a state like New Hampshire where we don’t have any sales tax or income tax, a lot of these municipalities decide what the property tax level is going to be and that affects people dramatically. CE: I think the message here is, get out and vote, especially in the smaller elections. A lot of people think are not that important – they are extremely important more so, at time, than the bigger ones.
JZ: I always talk about and I try to remind people about the importance of the Jaws rule – the movie, Jaws – the man eating shark. They elect the mayor and all the experts go to the mayor and say – we have to close these beaches! We have to close these beaches, they don’t close the beaches and a bunch of people get eaten! The mayor should have lost his job. He should have been voted out in the next election. Well, four years later, Jaws II comes out. It’s the same Mayor in the town and that’s because nobody showed up to vote to get him out of office. When people are civically engaged and paying attention, that can make a huge difference. Educating people with disabilities about their rights to vote and about the importance of voting and about how it gives disabilities rights issues a lot more notice, a lot more attention than they’d otherwise get. It’s really, really critical.
VB: I want to ask you, maybe you can say a few things about people with disabilities who think that they might not have a right to vote whether it be because they have guardianship or- I know there’s a lot of misconception about that. Can you just say a few things about that?
JZ: Sure. So in a number of states around the country, if you are under a guardianship or subject to a guardian, you lose the right to vote automatically. In New Hampshire, that’s not the case. There’s nothing in the guardianship statute that prevents somebody from voting if they have a guardian. As a matter of fact, in RSA 171-A, The Developmental Disabilities Act for New Hampshire that sets up the developmental services program, there’s a provision in there that says it doesn’t matter if you have a developmental disability, it doesn’t matter if you’re involved in a developmental services program receiving services from an area agency, that does not take away your right to vote. Nothing should abridge that right to vote. You’re absolutely right, Vanessa. There’s a misconception that well, I have a guardian. My guardian told me I couldn’t vote. It’s important to look at your guardianship order from the court. I think that a lot of people think that even if they’re not under guardianship, you know, mom and dad have been taking care of me for a long time. They tell me I shouldn’t vote. I don’t have the right to vote. Well, no, unless a judge orders a guardianship and imposes one on you that takes away that right to vote, you can vote. If you have a guardianship that’s 10, 20 years old or older, take a look at it. If the right to vote is taken away on that order and it’s listed as one of the things that the guardianship can control, please contact the Disabilities Right Center and we’d love to help you out and we can try to set you straight.
CE: I think it’s very important to point out that if you’re 18 years or older and a US citizen, unless judicially ordered, you have the right to vote. Especially in the small elections or you’ll keep getting eaten by sharks. So, to kind of a bigger topic. This has been a nationwide issue followed by CNN, MSNBC, all these people have talked about restrictive voting laws. Luckily in New Hampshire we have not passed one yet, especially a heavily restrictive one that we’ve seen in a lot of other states. Why do you think there’s such a big push for these types of laws, not only in this state but across the country? And, how do you think New Hampshire has been able to stop these from being passed? JZ: That’s a two-part question. For part one – why is there such a push? I think some people are concerned about election integrity. Right or wrong. A lot of people have been listening to media outlets, reading news reports that allege there are voting irregularities or problems with mail-in voting, with early voting. Some states don’t have voter ID laws, some states allow voter drop boxes. Some states, like New Hampshire, don’t have an absentee signature requirement. I think some people look at that – right or wrong – if Joe Smith doesn’t have to show his ID when he goes to vote and just says ‘I’m Joe Smith, give me a ballot’. Some people do have concerns about that. There’s no evidence that that has led to any kind of voter fraud at all. This issue has been looked at from every which way, and there’s just no proof that some of these laws that make it easier to vote and vote more efficiently, lead to increases in voter fraud. But I think there’s a lot of push back in that. And I think a lot of people just want to tighten up the voting process to make it harder for whatever reason. The second question is very interesting to me. To say New Hampshire hasn’t seen or passed any of these restrictive voting laws. I just want to point out there was a study that was done last year looking at the cost of voting of all 50 states and it was a survey. Can either one of you guess when New Hampshire ranks, 1-50?
CE: I think I saw this study, so I won’t put my vote in. But, go ahead Vanessa. VB: So, one being least costly or most?
JZ: The easiest state is number one, the hardest state to vote is number fifty.
VB: I’m going to say we’re 48.
JZ: 49! We are only ahead of Mississippi. New Hampshire is the second hardest state to vote in in the country. I have a lot of issues of how the metrics of that study, for a number of reasons. To answer your question, Chase, some of the reasons people might argue – we don’t have these restrictive voting laws because it’s already really hard to vote in New Hampshire, we’re number 49 on the list. I think if you take a step back and look at the big picture, all the other states on the list – it’s really hard to vote and for the most part are down south where in the 1960s they had to pass the Voting Rights Act to make sure that people would have an equal access to the ballot. New Hampshire clearly, we don’t have those kinds of issues. We don’t have that kind of history of voter suppression that a lot of states have and continue to have. So it’s a little bit upsetting to see New Hampshire is number 49. I think that because we don’t have early voting, that’s a big factor. But, we also have same day registration. So, in a lot of states, that’s one thing that I didn’t really understand about that study—states where you have to register eight weeks before the election, it’s easier to vote in that state. Even though if you forget to register to vote in September, you’re not allowed to vote in November. It’s still easier to vote in a state where if you forget, you can show up at the polling place like you can in New Hampshire and register to vote that day. To me, that reduces a lot of barriers to vote. But to answer your question about why we haven’t seen a real push for restrictive voting laws, I think we already do have a voter ID law already on the books, our state is by and large pretty educated. And if you look at studies –the higher the degree of people that receive post-secondary education, the more likely they are to vote and the higher the voting rates are. And New Hampshire ranks in the top seven or eight states of people who have received some post secondary education, I think that piece of being educated and understanding the election process, and how it works a little bit more. It fosters civic engagement, it fosters trust in the electoral process as well.
VB: I also think that we have a legacy of being very political people in general. And to go back to the Town Hall thing, as silly as that seems to some people, it is part of that history of being truly engaged in like the minute of decision making that goes on in your town.
JZ: It’s true participatory democracy. Back to like the Greeks in Athens. One person one vote, and it’s an anachronism and it’s kind of neat, but I think the reality of it is, it’s not great for people with disabilities because it’s like doing a caucus sort of thing. In the states that do caucuses, you have to show up all day long. You have to be willing to sit there for 5, 6, 7 hours and if you don’t, if you’re not willing to do that, say you have a disability, say you’re elderly, say you have young children and you can’t find childcare coverage, you don’t get to take part in the decision-making process. As quaint as it is, the bottom-line effect is that it does disenfranchise a lot of people.
VB: So, to wrap up, I wish we had so much more time. But we would be happy to have you back to talk about election results, maybe at the beginning of next year. I’d like to give people an opportunity to say whatever they want to say, so, what would you like to say about voting accessibility in New Hampshire?
JZ: I think that New Hampshire, the in-person experience has come a long way the last three or four voting cycles. But there’s still a lot left to accomplish. I think getting into a polling place is pretty easy throughout the state and you can’t say that about polling places around the country. Some studies show that 30-40 percent of polling places in the United States aren’t physically accessible. New Hampshire fortunately has eliminated a lot of those physical barriers but it’s the practical barriers that are very concerning and remain a concern. People that want to use an accessible voting system, like the One For All ballot marking device, people who want to vote in a local election, using an accessible ballot marking device, people that just want to have someone else come with them to assist them in the polls if they’re not literate or if English isn’t their first language, that can be a barrier. They maybe don’t understand, yes, you’re eligible to vote and you can have anybody you want, as long as it’s not your boss or your union rep, come with you. It can be your child, who maybe is proficient or maybe is literate to help you complete that ballot. I think there’s a lot of work to be done in terms of making local elections accessible, helping people with disabilities understand they have a right to vote, and to make sure that poll workers understand how to work with people with disabilities when they come to the polling place on election day.
VB: Thank you so much for coming out today and talking to us about this. Thank you, Chase. And if anybody wants to read Chase’s report, it is on the DD Council website. And if you have any questions, please let us know. I will put some information in the show notes about the Disability Rights Center NH and about your voting rights. Have a great day.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 11: Being a Family Caregiver
In this episode Pat interviews Sarah Sadowski, parent of a child with a disability and DD Council Member. Pat and Sarah discuss taking on the role of family caregiving and the effects of the paid caregiver crisis.
Learn more:
Caregiver's Conference (coalitionofcaring.org)
Caregiving 101: On Being a Caregiver - Family Caregiver Alliance
Episode 11: Being a Family Caregiver
Episode 11: Being a Family Caregiver
Transcript of video:
Vanessa Blais (VB): Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Patricia Vincent-Piet (PVP): Hello and welcome to another episode of That’s Inclusive! from the NH Council on Developmental Disabilities. I am your host today, Pat Vincent-Piet. And before we get started, I’d like to make an announcement about the New Hampshire Caregivers Conference that’s coming up in November, on the 8th from 8 to 4, that’s a Wednesday. It will be at the Grappone Center in Concord, New Hampshire. They’re having a great keynote speaker this year. Her name is Becky Rule, she’s a comedic storyteller. Her presentation is called ‘We cried so hard we laughed: stories from New Hampshire caregivers’. I’ve been to the conferences before. It’s such a great opportunity to meet other caregivers and share ideas, commiserate a little bit and spend time around people who just get it. So if you are a caregiver and you have the opportunity, please join us November 8th, from 8 to 4 at the Grappone Conference Center in Concord, New Hampshire. And today, I am fortunate to have with me, Sarah Sadowski. She’s a member of the New Hampshire Council on Developmental Disabilities. She’s the project director for New Hampshire Leadership which is an entity under NH Disabilities. She’s a caregiver for her daughter who has a disability. And as most of you know, I am also a caregiver. So, we’re going to spent some time talking about family caregiving and the ups and downs and the sweet surprises and all that great stuff. So, welcome Sarah.
Sarah Sadowski (SS): Thanks for having me, Pat. I’m happy to be here.
PVP: I’m taking off my headset right now because I hate hearing my own voice. So, why don’t we start off with you telling us a little bit about yourself and your role.
SS: Sure thing. So, my name is Sarah Sadowski as Pat said. I live here in Concord New Hampshire with my husband and our four kids. They’re ages 8 to 14 and our oldest has cerebal palsy and epilepsy and we’re really thankful that her health is currently pretty stable, which is wonderful. She’ll actually be a freshman here at Concord High next year, which is wonderful to be in the Concord High recording space. She’s at camp with a friend today. We’re really fortunate to have a great team around her. But, I know that’s not the case for every family. But being her mom has really opened my eyes to the caregiving crisis here in our state. So thanks for having me.
PVP: We’re really glad to have you. So a lot of the questions I have, you’ve already shared. When we had met before, the big thing that stuck with me was when you told me about the story of her hospitalization and your experience with other families at the hospital. Can you tell me a little more about that?
SS: Sure. Well, my daughter is very susceptible to respiratory infections, and unfortunately sadly when we land in the hospital, that’s often what lands us there. So we’ve had several NicU, PicU stays. That’s the intensive care unit at Dartmouth and also at Children’s. She’s been a frequent flier in both those places, sadly. One of the things that I’m so struck by when I am overnight at the hospital with her is how few children are actually accompanied by their caregiver. And so it just breaks my heart wide open that in this state we often have kids going through medical experiences alone. That’s just really sad. Parents come in when they can but often we know the majority of children in New Hampshire have both earners in the workforce. If they’re in a two person household, they have all possible earners are in the workforce, I should say. And yet, the paid leave is lagging behind. A civic strategy groups says Leave it to Beaver policies in a modern family era. Right? And to live that experience being in the hospital with Angelina and to feel my own family struggle with who goes back to work, who works luckily we’re sometimes able to work bedside. But then you’re torn 2 because you have deadlines at work that don’t just pause and you want to get your job done but you also want to be there and care for your child. I’m all about the cultural changes that we need to have happen so that more children especially can be supported by their loved ones. But, that’s something that everyone deserves. In our moments of sickness and vulnerability, we depend on those around us. We all will. So making sure those systems are really robust is important.
PVP: As a caregiver of an adult, our experience has been, if someone goes into the hospital, Medicaid can no longer pay for the hours for a caregiver. And it’s not like the staff at the hospital, I mean like we were just talking about, you were saying Dartmouth is down 1200 employees, 1200 staffers. Even if they knew how to care for someone who needed help with activities of daily living which they don’t because that’s not part of their training, there’s not nearly enough people to do it. Hospital stays for people with disabilities is not good. You were saying that you have a good team around your daughter right now. Can you tell us a little bit about the team?
SS: Sure. It’s been years in the making. We are very fortunate in that we met an incredible nurse, gosh it’s been seven years that she’s been with our family. Without her support, I simply could not work. Part of the way that epilepsy manifests in our family is a lot of sleepless nights. A lot of nights where it can be hard. Thankfully it’s less so at this point. But our nurse is still there to make sure there’s any kind of care that needs to happen in the middle of the night, particularly if there’s something like vomiting or being sick to your stomach. You should not be alone when that stuff happens. It’s really important that we have someone there who can take care of the medications that she needs and be there is something goes wrong. So we’re really fortunate that we met a real unicorn of a nurse and she’s the one who makes it all possible. That being said, we have night nursing 5 nights a week at our place and then, in addition to that, we do have folks who support our daughter in the community. I actually testified about this with my personal hat on at the state budget hearings this year. This workforce issue is something we have to get our arms around. Because this is just not a tenable situation where the workforce shortage is such that if we want to support our community members, being out and about, as they should be, as they have a right to live in their community like anyone else, we need to invest in our workforce. I’m very grateful there’s a program right now where some caregivers can get compensated for a portion of the care they provide. But at the end of the day, my daughter’s 14. She doesn’t want my husband or I hanging out with her while she’s going out with her friends to the movies or doing things that, she went to a middle school dance, for example. She doesn’t want my husband hanging in the shadows. No matter how much we ask to chaperone, she politely declines.
PVP: You get politely?! I don’t remember politely!
SS: But, she went with a friend. And we were able to have someone there who was a chaperone who was able to be responsible if anything went south. Because in our family we always plan for, what the worse case scenario that could happen? And we need to center personal safety. Because our child uses a wheelchair and uses an eye gaze to communicate, and because the eye gaze is very fatiguing at this point. She doesn’t always have it with her. At this point she prefers blinks and she’ll blink the affirmative instead of using her Tobii for example. So the caregiver issue – I hadn’t heard that stat about Dartmouth but I’m sadly not surprised. This trend of workforce issues just seems to be – you and I were both at the family support conference this weekend. And hearing there’s not a wait list but there’s a caregiver crisis. The hours that you get don’t matter if you can’t fill them.
PVP: One thing I was thinking about this morning as I was thinking about this is the emotional intelligence it requires for someone to be a caregiver. To walk those lines between making sure someone is safe and that they have control over their own lives. Even if the person doesn’t have or going to have family members who want to be involved in one way or another. And so we’re asking people to take on this really delicate balance that requires a lot of emotional intelligence for $11 an hour? This is a hard job. It takes a lot. And we need to recognize that DSP and other paid caregivers as true professionals who are skilled. It’s a skilled position. I think we look at it as regular labor like working in a factory. But it’s not. It’s a skilled position and we need to pay accordingly. I really appreciate right now all the people who have these amazing skills and are not being paid but are staying anyway. We can’t continue to ask that indefinitely. Not if you want quality care.
SS: I completely agree with you. One of the things that you said that really struck me is the importance of the professionalization of the field. Centering consent – making sure we have care providers who understand the importance of individual autonomy. Our daughter will be a really good candidate for the shared decision making agreement which is an alternative to guardianship which will really put her in the driver’s seat for most of her decision making with us serving in an advisory role. And we really want to have that be the philosophical norm around our child as she hits this really important transitional age. But, you’re right. It comes down to this is a hard job and people need to be compensated accordingly. And that it saves us money in the long run. When you think about the return on investment for preventative care, for being proactive about managing health conditions. In our case, making sure we mitigate the risk of aspiration to the best of our abilities. Well then you don’t get a pneumonia that lands you in the hospital for days on end. If we can be proactive it’s actually much more cost affective and it frees my husband and I up to be full earners – you know, we pay property taxes and we pay our health insurance, and we do all of the things you can do when you’re able to be a part of the workforce. I want my kid to be able to be part of the workforce too and that happens with supports.
PVP: It doesn’t happen in congregate living situations. It doesn’t happen in group homes and nursing homes. It only happens when you have control over your schedule, over your space, over the people who are helping you, who work for you. It can be such a delicate balance. Because caregivers, when we don’t pay very well. Some of them try to make it up in an emotional connection and then that ends up being very problematic. They want to be part of the family. And, I get that but you’ve only got some much band way. In fact Jim had one kid who, because I was also caregiving, was a little upset that he was treating me differently than he was treating her. He’s married to me and so it’s going to be different.
SS: Those are not comparable situations.
PVP: But that’s where the emotional intelligence comes in. If you’re not paying enough to hire people with that level of understanding, then you’re going to get what you get.
SS: That’s absolutely true. And I hadn’t thought about that angle about folks looking for that deep emotional connection in a professional role. That’s not something you see in other professions necessarily.
PVP: Because people don’t see it as a professional role. They see it as they’re giving up that this particular person minded up and she could get more elsewhere. And she was totally right. It would have been nice to have been paying her enough to say, no, you can’t really—this is a job like any other job and you need to act like an employee.
SS: Your boss is not your source of emotional validation. Hopefully! If you have a healthy work place.
PVP: So, as you look toward her future, you talked a little about the alternative to guardianship. What are some other things that she’s looking at doing that you’re wondering how it’s going to work out. You’re wondering how the care’s going to work out and do you have any ideas on where to get the care that she’s going to need?
SS: Oh, that’s a fabulous question, Pat. And it’s really one that our family is talking and thinking a lot about right now. Going through NH Leadership Series, I graduated in 2017, like really opened my eyes to the importance of personcentered planning, and really centering the needs of an individual in that plan. We’re in a situation where I think sometimes at 14 the future feels really far away and yet her father and I are already talking about, well, if it’s college, how are we going to do—like so many families—how are we going to do college? I draw a lot of hope from the movement in post-secondary ed. I know it’s not for everyone, but for some, there are programs like ‘UNH For You’. Or, I know Syracuse has some really great options for individuals with disabilities to be supported in the university setting. I know that, I just have a feeling like my kid could really thrive in a situation like that and I definitely feel firmly that she should have the choice. Just like any of her other siblings, she should choose if she wants to go to college or not. That being said, I also recognize the constraints of working with a disability at the moment. It’s so difficult, particularly the sticky situation with benefits and if you earn too much you get disqualified and if you get married you can get disqualified. There’s a marriage penalty that’s not right at all. And I feel like, this is really something that as my child plans her future, I want to keep the maximum number of options available. And when I think about what she might do for work, like so many families before us, could we pull off a small business. If college isn’t in the cards, what can we do to explore those options? That being 6 said, I think figuring out the caregiving situation will be a piece of that. It will be a piece for my daughter, it will be a piece for either my in-laws or my own parents. Figuring out how we address caregiving as a culture. I think is so important. I do draw a lot of inspiration from the way some of our older Americans are aging and the way that they’re insisting on universal design housing, for example. Finding a place to live that’s maybe not a house on an acre, that’s not a single family home, but something that’s closer to downtown and that is more integrated more into the community than maybe some of our more rural locations in the state. Yah, it’s all tied together, though. But at the end of the day, she’s got to be at the center of it and driving that decision making process.
PVP: It must be tricky. Because Jim works for VR. He’s still working for VR and he’s always talking about starting in the end of middle school, the beginning of high school starting with transition planning. I remember being a freshman in high school and all I cared about was what I was going to wear that day and how I was going to fix my hair. Just hanging on for the weekend when I could hang out with my friends. What 14 year old is thinking about—only very oddly, highly achieving one. They shouldn’t have to. They should be able to enjoy that crazy, stressful time of being a teenager.
SS: Right. It’s hard enough to be a kid today.
PVP: And we expect them to plan out their future at 14 years old, it just seems like an overreach.
SS: That pre-frontal cortex is not fully online. We know this.
PVP: Even when they graduate high school. I mean, I remember sending kids on to college, going with a list of rules and have fun, but do this, this, this and this to stay safe because… So, was there anything else that you’d specifically wanted to talk about? I want to make sure that you get all…
SS: Sure. I know when we first met we were connecting about the joys and the complexity of caregiving. And, I was thinking in preparation for today, there is a lot of joy, too, in being able to do this work. I was thinking about how fortunate we are to have the time. I heard your episode about inspiration porn with the Stella Young’s clip which I just absolutely, I think that is so key to not put people 7 on a pedestal and to be realistic about – being a human is hard. We’re not all getting it right all the time. I just love that you all referenced that. And I do feel really fortunate that I have more time with my kid than a lot folks. And at 14, we still spend a lot of time together. And I feel very fortunate in that respect. And I can be my best self as a caregiver because I have a network of support around me. And that’s so key I think in supporting her as she reaches her full potential. There’s such a temptation [ ]--every now and then I’ll run into people and they say, I could never do that, and that’s such a cliché, it just sets my teeth on edge. Yes, you can. You would. We’re all just a negative health incident away from this kind of thing. And we should be looking to each other for support. All of us. So, I was thinking about the joys. Are there any joys about caregiving that bubbled up for you as you were thinking about today?
PVP: Mostly to our daughter. She’s really connected with her father. When she was little, we didn’t think that that was going to happen because they had their…But now she comes and she cares for him. She worries about both of us which I kind of wish she wouldn’t do. But, with her fiancé, we have gone on a couple of trips together the four of us. It’s an incredible feeling, to be together with them and to watch them mature and take on the mantle of care giving and to enjoy it actually. I think about – this is my responsibility, not wanting to put it on other people. But then, people love to do it. They love to help out. They love to be connected with someone. It gives them a chance to connect with somebody in a special way that you don’t connect with others on that level. She had a really great relationship with her father but one thing that drives her nuts, we go out and inevitably somebody comes and wants to pat Jim on the head and say, it’s so great to see you out and Katelin is like…… because that’s her father! When do you say that to someone’s father?
SS: Well you never should. Not treating people in a paternalistic kind of way should be a standard. But Katelin has developed good instincts I bet about the kind of people that she wants to surround herself with too.
PVP: She has.
SS: There’s a lot of beauty in opening ourselves up to help and support. And I’m saying that as me as a caregiver. It’s so tempting to be like, I’m juggling it all but that actually does a disservice to the overall needs of our family because I benefit just as much if not more from a network that supports me and my kid. And so, I have found it challenging at times. We live in such an independent culture where it’s you and your bootstraps. But you actually can have much more rich relationships when you open yourself up to the fact that we all need support. Being able to lean on my friends in a different way. That’s been a gift. It deepens relationships and connections which we’re all craving, especially right now.
PVP: Well, I think you and I could talk for hours. Unfortunately, I don’t think people necessarily want to listen to us for hours.
SS: I would talk to you anytime Pat!
PVP: Same here. This has been great.
SS: Thank you so much for having me.
PVP: Well, thank you for coming. Maybe we can do it again sometime. Maybe talk a little bit about our professional role.
SS: Oh, that’s right. We wear so many hats. I’d love to come in and talk about the benefits of the NH Leadership Series and if folks are looking for ways to grow their support network, I’d highly recommend checking out NH Leadership. We are a program that does training for individuals and families who experience disabilities. It’s a great time. We’re going into an excellent cohort for the year ahead.
PVP: We look forward to that in the future. Thank you all.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 10: Taking Part in Democracy
In this episode Pat interviews Olivia Zink. Olivia is the executive director for Open Democracy NH. Pat and Olivia discuss all things democracy in the Granite State. They cover:
- Changes to absentee voting since the end of the pandemic
- Efforts to strengthen the democratic process
- The effect of money in politics
- Accessible voting options
- And at least one surprise!
Learn more:
Open Democracy NH
Voting scorecards - Open Democracy Action
Voting Accessibility in NH (futureinsight.org)
Episode 10: Taking Part in Democracy
Episode 10: Taking Part in Democracy
Transcript of video:
VB: Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place? PVP: Democracy is to disability justice movement, what a firm foundation is to a solid building. Without thriving representative democracy that responds to its people and protects the marginalized, the disability justice movement will crumble.
PVP: Welcome to another episode of That’s Inclusive! I’m your host, Pat Vincent-Piet, and I’m joined today by Olivia Zink. Olivia is the Executive Director of Open Democracy NH. She’s going to update us on the state of democracy in the Granite State and what we can do to help strengthen it. Welcome Olivia.
OZ: Thanks Pat. It’s great to be with you.
PVP: It’s so great to have you. So to start, can you tell me more about Open Democracy and Open Democracy Action. They are two different organizations. Can you explain to me what they do and how they are different?
OZ: Sure. Open Democracy is a non-partisan, non-profit based here in Concord and our organization was founded by Granny D. who walked across the country for campaign finance. And her story is really a story of a woman who was 90 years old who said – what can I do to change how elections are funded in this 1 country? So she took 3,200 steps across the country. Really demonstrating that we all have power and a voice to make a difference. It doesn’t matter how old you are, you are able to make a difference. And so, our organization founded on that principle, of an equal voice for all of us. We kind of work on three areas: ensuring that everyone has access to voting, working on campaign finance reform so that everybody’s voice is not drowned out by big money, and fair districts so that the maps are drawn in a fair way so we all have fair representation. We do have Open Democracy Action, which is our C4, more political arm. It allows us to do some lobbying at the State House because we really want to change the hearts and minds of our Legislators so that we can have a more fair and open democracy.
PVP: Great. New Hampshire is ranked one of the hardest states in the country to vote. Can you tell me why that is?
OZ: Thanks Pat. I think there’s different studies. So there is one study that ranks New Hampshire on a bunch of different criteria including: can you register to vote online? So many states, the majority of states, have some sort of system of online voter registration. So you can fill out the application, your name and address, and what party you want to register. But New Hampshire, you have to do that in person by going to your town or city clerk’s office during office hours and filling out that form. We also are able to register to vote, though, on the same day of elections so you can go on election day and register to vote. But if people move, one in five people move, wouldn’t it be awesome to have an ability to change those important voter registration details. And there was legislation that passed both the House and the Senate this year that would have created an on-line voter registration portal, but unfortunately it died in Committee of Conference. So more next year on the online voter registration portal, getting New Hampshire to be the 42nd state to have such a way to register to vote.
PVP: I went on your site and there were several bills that were introduced last session and some of them were considered anti-democratic. Did any of those bills pass or is there any issue that keeps coming up that is cause for concern to Open Democracy?
OZ: There are lots of pieces of legislation around the state of our democracy. I would say 50 or 60 bills are introduced each year. Some are advancing democracy and some are more harmful to democracy. The good news is that this year, no major bad things happened. In the year prior, though, there was a piece of legislation that has gone into effect and is in court right now, around if you register to vote without the certain documentation you need, you have seven days to provide it. And if your house burns down or if you’re somebody that doesn’t have a driver’s license or a photo ID, you might not be able to come up with proof of documentation in seven days. I know it takes more than seven days to get a passport if you’re missing your passport or proof of citizenship. If you need your original birth certificate if you were born here in Concord, New Hampshire, it’s easy. You pay the fee and you get your new birth certificate. But not everybody has access to all the documents they need. And, one simple house fire or some problem with documents being misplaced, it could disenfranchise somebody.
PVP: Easily. I know I had to get my birth certificate from Dallas, Texas once and it took several months.
OZ: Yah, be proactive. Make sure you have all your documents in place. And also make sure, people who are listening, can check to make sure they’re registered to vote. So if you think you’re registered to vote, cause every ten years they go through the voter checklist and remove somebody who hasn’t voted and so your name could come off the checklist. You can go to the Secretary of State’s website and do a voter lookup—put your name and your date of birth in and verify that you’re still on the voter check list. So I urge all voters to just double check that they’re still on the list and at the same address and then they know they’re safe to vote and to bring the proper documents you need such as your photo ID to cast your ballot on election day.
PVP: That’s a great idea. During the pandemic, they were allowing everyone to vote absentee. But that has gone. That’s no longer the case, correct?
OZ: Correct. I just want to be clear. Only the Covid 19 pandemic rules, there were special rules that were passed in 2020, only those have gone away. But 3 there are still abilities, especially for people with a disability, to cast an absentee ballot. So if you do have a physical disability, if you’re going to be out of town, there are still four valid excuses that you can request an absentee ballot. You fill out the form, you want to make sure you do that in plenty of time ahead of an election but you’re still able to cast your absentee ballot if you need to vote safely from home.
PVP: That’s good to remember that you can vote absentee if you fit one of those four excuses.
OZ: And disability is one of those excuses. And that still is valid in law even though the Covid excuse was actually the disability excuse, we all checked disability who wanted an absentee ballot due to the fear of the pandemic.
PVP: Was Open Democracy, and correct me if I’m wrong, was Open Democracy at one point trying to advocate for more absentee ballots without an excuse? Was Open Democracy advocating for that and what happened to that?
OZ: There has been many attempts to have no excuse absentee ballots. Actually, Kathy Rogers, who is a former Concord State Rep, was prime sponsor of that legislation for many years. There has been efforts to expand who is eligible for an absentee ballot. So if somebody is not disabled but might have an illness, like a chronic illness or some other way that they can’t make it to the polls—I’ll just talk for my Dad. Before my Dad passed away, he was wheelchair bound but he was a proud man. He said ‘No. I’m not disabled. I’m still able’. Cause he wasn’t technically, even though he had, you know, he was 80, and not in the same physical shape when he was younger, didn’t really feel like those rules applied to him. Because he had to sign a sworn affidavit that says he was disabled and he didn’t feel like that was proper for him. I think that many people who have an illness might feel that same way. And so having expanded ways for people to participate in our democracy is something we’ve looked at – if people can safely vote in person, then go to the polls. But if there are some valid reasons why some people can’t make it on election day –
PVP: Right. And I really found that being forced to disclose a disability is problematic. You shouldn’t have to declare. You should just be able to vote safely without giving an excuse as to why.
OZ: Right. And I think that New Hampshire has come a long way for people with sight disabilities to be able to cast a ballot safely and securely. I think we’re on our third generation of One For All equipment that can be used to help people who might not see; who might be blind or deaf or not physically able. And I think that we need to look at everybody’s ability—I mean, so many people come to the polls and say, it’s printed, I can’t read it. Do you have reading glasses? Being able to vote from home, where you can vote at your own pace. But, the One For All equipment we have in New Hampshire is only used for state and federal elections. Only in Concord, Exeter and one other community do they use them for municipal elections. Everybody who might need to use the One For All equipment if they are a blind voter or a deaf voter, somebody who needs assistance. That equipment should be available for all elections, not just the federal elections. So New Hampshire could do more to expand our ability to ensure that people have access to the ballot. And I think there has been more upgrades, the third generation of this, so each year the Secretary of State and election workers have been working to improve access. And I still think we have some work to do to improve access. Especially making sure that this great equipment is available for all elections.
PVP: I had no idea that it wasn’t available for municipal elections. It seems that it must be a violation, if not the American with Disabilities Act, some sort of voting rights law.
OZ: The reason Concord has it available for municipal elections is because there was a lawsuit and now Concord uses that equipment. And Exeter proactively implemented that in their community—I think there’s a blind community in Exeter that was really proactive to make sure that people who can vote safely in Exeter. But most communities at town elections, do not have those One For All equipment.
PVP: I did not know that. I had One For All training. I’ll have to look it up, but I think it was the Association for the Blind that put on the training, so that you could learn ahead of time how to use it. But that seems like a very big oversight. I wanted to talk with you about the ODA scorecard I saw on line that you guys have. I thought that was an incredible idea. I’m wondering if any disability organizations want to do something similar, to talk—talk a little bit about the ODA scorecard.
OZ: Well, thanks for talking about--How do we get to the State House? How do we make sure our voices are heard? And How do we know how our Representatives vote on certain things that matter to us? And I think that this is important for an open and transparent government for all of us. Honestly, New Hampshire doesn’t do a very good job in- yes, you can go to the GenCourt website, yes you can look up your State Rep and yes, you can see which bills they supported or opposed. But, it’s actually not very user friendly. And, so what we have tried to do on the democracy bills that are important to our organization, is really pull that data off of the General Court website and break it down so that the average voter can sort of see clearly that their Representative either voted in favor of this legislation or opposed to this legislation and really give them a score. Because it’s really hard to understand – sometimes a yeh vote, it’s not the simplest thing for the average voter to navigate that state website. To understand when bills are being heard, and it’s something that we all need to learn so that we get better at practicing democracy. And, it’s something that Open Democracy loves to teach, is how we can learn these skills. Actually, later this afternoon we’re doing a training on how to look up your State Rep and how to see how they voted on bills that are important to you. It’s important for us to understand that. Because, it’s not just about voting. It’s about knowing the information you need to know in order to cast the ballot.
PVP: Is this in-person training you’re doing? OZ: It’s a Zoom training we’re doing this afternoon. But happy to share links. If groups want to know how to look that stuff up, happy to figure out how to make that more accessible. I once did a training at a local library and somebody said to me, “I can call my State Rep at home?” I said “Yes you can! They don’t have an office. Don’t call their office number because there’s no one there to answer it. You need to call your State Reps at home. In order for us all to participate in democracy, we have to learn the skills in order to participate as active citizens. I love to sort of think about it as, we all practice when we’re on a sports team, to get better at things. We’re practicing democracy and learning these skills collectively.
PVP: One thing I loved about the ODA scorecard is-- so I read plenty of legislation and I often times end up having to read it several times before I understand what the legislation is about. But the scorecard on the website, puts it in plain language. So we understand not only what the bill is proposing but how it might harm or benefit democracy.
OZ: Yah, legislation is written in legalese, right, that’s what it’s there for. But, we need to break down those legalese barriers so that regular, everyday voters can understand these things.
PVP: Right. It would be nice if we could, and I know that this is dreaming big, but if we could get at the legislators to write their bills in plain language, everyone could understand it. I especially like with this scorecard that it’s color coded. It’s really easy to read. Having it in the digital format is very helpful for people who may have processing issues. So I really appreciate that you guys did that. So, I wanted to get an idea of how hopeful are you – you said that we’ve made a lot of strides in democracy here in New Hampshire. So, looking forward, do you continue to be hopeful that we will continue, that New Hampshire will become more democratic or are there things that give you pause?
OZ: So, I always think of democracy with a little ‘d’. I am very hopeful. I have faith and confidence that our election procedures in New Hampshire are fair and we can do better. And we can make improvements to make our elections stronger and safer. We do see more and more money influencing elections every year. And, there has been a campaign finance sub-committee which is a bipartisan group of legislators working together this year like I’ve never seen to try to introduce legislation next year to make our elections more transparent. So voters know who’s spending money to influence elections. So, I do think that—to answer your question, I am hopeful. But I also think that my hope comes with an appeal for your audience to practice democracy, too. Because, hope only comes when the people are demanding the changes we need in the legislature. And if we continue to allow big outside money, un-transparent ideas to come behind closed doors, then we’re not going to have a strong democracy. But if citizens come together, they make the demands for fair and transparent government, I think New Hampshire can really have a strong, functioning democracy. But democracy is under attack. There are forces that do not want us to have a strong democracy. They want a few individuals to have control. Some of the data I’ve looked at over the last ten elections, there’s twelve individuals –six Republicans and six Democrats—who spend 60% of the dollars to influence elections. And they like to have that power. They like to have the influence that they have. And I think that it’s going to take all of us, all parties to come together and say, we demand transparency. We demand accountability. And we want to know and we want to be involved and participating and active in our democracy.
PVP: Twelve individuals within the state or nation?
OZ: The nation. I can qualify that – twelve white men.
PVP: I really appreciated you coming on. Unless there’s something else you want to share. OK. Thank you for coming. We will link to your website in the show notes so that if anybody wants to learn more about Open Democracy or how they can get involved in strengthening the democracy here in New Hampshire. Please look up Open Democracy NH.
OZ: And I just want to final note call, the podcast is about an inclusive democracy, right? Inclusion of all of us. And I think that we all have a role in our democracy. We all have talents and skills that we can offer to make change. As one of our Founders said, “Democracy is something we do”. And, we all have to do it together. So thank you, Pat, for having me. And, thank you to the listeners. I hope we can practice democracy together.
PVP: Great Olivia. Thanks again.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 9: Sheila Vargas, All Access Trails
Sheila Vargas, the Community Partnerships Manager at the Nature Conservancy, talks with Blake Tyler about involving the community in planning accessible outdoor recreation, how preset notions send a false message that nature is only for certain people, and how the work to make the outdoors more inclusive to everyone continues.
Learn more:
The Nature Conservancy in NH
The Cedar Swamp All Persons Trail
The All Persons Trail at Ossipee Pine Barrens
#Trails4All
NHTrails4All
Episode 9: Sheila Vargas, All Access Trails
Episode 9: Sheila Vargas, All Access Trails
Transcript of video:
Vanessa Blais: Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
B = Blake
S = Sheila
B - Sweet, well uh hey everybody it’s Blake with the New Hampshire Council on Developmental Disabilities. I’m the Social Media Assistant so you may have seen some postings from me over the last few weeks and months. I handle the postings on Facebook, Instagram, and Twitter. Hopefully you really like the information, resources and etcetera that we post and if you don’t, I am the guy to complain to. But like I said hopefully you guys have liked it. I’m here today recording some audio for our next podcast episode of our show, and I’ve thought that with the weather finally getting nicer and it not being torrential downpours every other day, knock on wood, that folks can finally get outside and we’re going to be talking about all access trails and kind of the universal design aspects that go into some of these all access trails. As somebody who enjoys the outside myself, I’m a runner, love running out there, I just think it’s really important and I brought in my friend Sheila from The Nature 1 Conservancy based here in New Hampshire to talk about some of the great work she and her organization have done on that front and yeah Sheila if you wanna just introduce yourself!
S - Yeah absolutely. Hi Blake, thanks for having me on. As Blake said my name is Sheila Vargas and I am the Community Partnerships Manager for an organization called The Nature Conservancy. So, The Nature Conservancy is actually a global organization and I work for the New Hampshire Chapter. We have a chapter in almost every state in the United States and we do lots of work across the state of New Hampshire. We’re statewide, so we do everything from marine work to preserving and maintaining land. And in New Hampshire we were actually able to help protect nearly 300,000 acres of forests, fields and other natural areas. So today I’ll be sharing a little bit about our process to make a couple of our preserves more accessible.
B - Awesome yeah again thank you so much for joining and for all the amazing work The Nature Conservancy is doing here in New Hampshire. As I said to you guys, I love being outside. Personally I have not gotten the chance to run on their All Persons Trail in Manchester actually, which we’re going to talk about a little bit later in the show. But very much enjoy being outside and for me when I think about why all access trails should be widely available to everybody both myself and of course the disabled community why it's so important I think being outdoors is in some respects the great equalizer for society. It’s meant for everybody, there should be a great deal of equity when it comes to outdoor spaces and enjoyed by all. And so, for me that's why it's really important and I’m just wondering Sheila why that is so important for you and your work, as you go about doing it?
S - Yeah so in my work as the Community Partnerships Manager I really serve as the connective tissue. I like to give that visual, between community members, organizations, companies, and our organization and our mission, which is to preserve the lands and waters on which all life depends, obviously humans, and animals, and plant species. And so, for us we really are in a power up position of privilege as a global environmental organization in so many ways. Especially as the stewards of so much land in North America. Alone we own and manage a little over 2 million acres and we understand like you just said that everyone really does deserve to reap the benefits of being out in nature. And it doesn’t necessarily have to be on a hike in the White Mountains, it can be in a park, it can be in a garden. And so for us, we feel that it’s important that those who have access to nature and are actually able to enjoy nature are as diverse as nature itself. And if you look back at history, and honestly even things like old catalogs for outdoor retailers, you really have typically only seen one type of person enjoying nature. And so for us it’s really important again that that representation of folks who are out there increases and one way to do that is to create all access trails on the properties that we own and manage.
B - Yeah, I love the phrase connective tissue. I very much in my work, which can be hard to visualize for folks sometimes, love images, love the idea of giving them an image just help, you know, visualize that work and why it’s important so I love that, thanks for using that phrase. You touched on something really interesting and it’s actually not in our preset of questions so I’m going to go a little off script for the folks at home. You mentioned a really interesting point how when you look at media and papers and stuff, forward facing information about these trails like you said they are all one type of person. What are some of the dynamics at play there that you think feed into that, is that socio-economic, is that racial, is that able-bodied-ness, just curious what preset notion society has for that that causes us to only see one type of person when these trails are being broadcast shall we say?
S - Yeah, I mean, and I would say there’s science, there’s social science, to back up some of the points I’m about to make. Also a lot of this can be seen just by looking around at various neighborhoods. So, typically more affluent neighborhoods have more green spaces. So for us that’s really the first part of this. The individuals who have more money, have more resources, have more affluence in society tend to have the nicer parks, the bike trails, access to those 3 green spaces. So socio-economics does play a huge role into that, just generally the power dynamics when it comes to our society where typically our society has really given power to those that not just have wealth but who are able-bodied, who are cis-gendered, who are a certain type of person. So, I think it really does lend to just the history of not just our country but I think human society in general.
B - Right, and I love that you mention the social sciences aspect of it. It makes a lot of sense. You know walking, running, whatever around Manchester you go to certain parts of the city, and you go “the sidewalks are bad, there’s not a lot of trees, the parks are many miles away.” You go to other certain parts of the city, and you go “there’s the park, there’s the nice bike lane, there’s this and that, the sidewalks are nice and even and paved.” Definitely can attest to what you’re saying, and that kind of leads into the next segue here. What are some ways collectively that everybody who likes being outside, able-bodied, or otherwise, can come together to make all access trails that do exist even better and more widely available for folks, and putting it on their radar. Something a lot of folks just don’t know about these things?
S - Yeah, yeah, that’s a great question, it’s also I think a very big question to unpack so I can talk a little bit about our process and how we went about because frankly as I said our organization is in a power up position and instead of just saying “hey we want to build an all access trail to feel warm and fuzzy and good about ourselves” we decided to actually talk to community members and community organizations and say “hey we’re thinking about building this trail, in your community, and we want it to be used, we want it to be a resource, we want it to be a place where everyone feels welcome and everyone feels a sense of ownership and has a safe space to be able to get the mental and physical benefits of actually being in nature. So, in order to do that we’re looking for your input. What can we do to make this is actually all of those things and maybe more? And so we held a series of six listening sessions, unfortunately with COVID a lot of them had to be virtual. We had this awesome plan of having them at various spaces across the city of Manchester. We were able to have one in person, which was amazing and very well attended. It was at Backyard Brewery too so I think that may have had a little bit to do with the turnout. But it was very interesting just to hear so many different perspectives from individuals around what are the barriers to nature. And for us that was really the first step was like “what are the barriers to doing this in a way where it's built with the community not just for the community. Because there’s a big difference between those two things. Because while we can own and steward land, and build trails, until we actually have input from people who think differently from us, that don’t live every day in this conservation bubble, we really can’t advance our mission in an equitable way. So first step I think for communities, organizations, anyone who’s interested in doing this is really to taking the time to getting the input and frankly our project was slated to be about a little over a year and turned out to be a little over three years. And that’s we really slowed down the process in order to to really listen and learn to the barriers about all types of people, all different backgrounds and abilities. That contributed to us being able to build our all persons trail. And it’s called an all persons trail because we really want it to be for all people.
B - Right, and she’s alluding to the one in Manchester folks, over at the Cedar Swamp area. Again, shamefully I have not run there yet even though it is like a mere 10 minute drive away so I do need to just make it happen and stop making excuses personally. You mentioned in part of your process about those listening sessions, you know my organization, we do some listening sessions here and there and I’m just so curious, two branching thoughts that came while you were discussing that. One being, prior to the actual day of the listening session what was y'all's process, whether door knocking around that community or social media campaign and a phone calling campaign, whatever it may be, what kind of went into building attendance for that and really getting the word out there, like “hey we want to hear from you so please attend because otherwise we’re not being, you know you talked about intentionality you know when you said it went from a one year t imeline to a three-year timeline, because you guys were intentional about really digging in and listening to the community and kind of piecing all that together. So, that was one little question I had. And then a follow up to that would be at the actual listening sessions what were some of those stories of barriers, of hurdles, that the community mentioned to you guys that factored into how you went about, you know creating the trail, and what went into that based on the hurdles that you heard about.
S - Yeah, I might have to have you repeat the second question. Because I know I’ll probably have to ramble a little bit. But just really quick two things that I wanted to mention off the bat is that we actually have two all access trails in New Hampshire. I think I may have referred to them at the beginning. But just so individuals are aware there is one at our Ossipee Pines Barren Preserve, in Ossipee, so that one was built with a lot of recommendations, because there are existing recommendations around how to build all access trails to varying degrees. That was our first trail, and we learned a lot from building that and then the fact that we own and steward land in Manchester within the city limits, it’s actually the largest unbroken block of land within the city of Manchester. Most people are surprised and that was something we heard a lot during our listening sessions. Individuals were really surprised to hear that there was a 640-acre preserved piece of land in the city of Manchester even though the city’s master plan actually refers to the preserve as a hidden gem of the city, a jewel of the city. B - I didn’t know and I’ve lived here my whole life!
S - Yeah! And so that was really one of the first things that we discovered was that while the Nature Conservancy has been in New Hampshire for over 60 years, we have not done a ton of work from Concord south in regards to engaging with community members. We’ve done some work specifically with various municipalities and some other work but when it comes to actually engaging with communities and ways that is on the community’s terms I’ve only been with the organization, it’ll be 5 years in October, it really started with the onboarding of my position but also with our amazing stewardship staff who goes out every single day and manages our properties and just a huge shoutout to them because without having actual conservation practitioners who are onboard with creating all access trails, it really cannot happen. So, the fact that our stewardship staff was really the pioneers in our chapters in wanting to make these lands accessible and understanding the benefits that it could have for all people. I really would be remiss if I didn’t give them a shoutout. Uhm, but just back to your question, what was the first question? (laughs)
B - That was the first question! It was kind of, you know the awareness campaign and all that. The second question, what we wanted to hear about, was some of those hurdles and barriers you heard from those listening sessions, and also how you spread the awareness of said listening sessions whether it was a door knocking campaign, a phone banking campaign, a social media, or you know the good way of doing it, all of the above! S - Yeah no I personally love talking about this because even though it set our project back a couple of years, the listening sessions was actually my favorite part of this whole project. Aside from the trail being complete and our continued partnerships that we’re doing on the trails with various groups in the city, as well as some guided walks. But the listening sessions were awesome and just for some context I come from a background of community organizing and issue advocacy with various political campaigns. So for me building partnerships with organizations who serve the community that we are seeking to serve was the first step. So we held six listening sessions and I reached out to organizations that either had vast memberships in the Manchester area or were very involved in the Manchester area. So, the listening sessions that we held were physical access to nature, black in nature, LGBTQ+ in nature, active seniors in nature and there was one more that I cannot remember. But yeah those were for individuals who obviously felt like they identified within those groups or allies of those groups and everyone was welcome. They weren’t exclusive listening sessions, we also held various coffee updates, but we knew that we wanted to create a space where people could say, “hey I identify with this group that’s meeting to talk about some of the barriers.” Frankly a lot of the barriers that we heard in the listening sessions were cross cutting. So transportation to green spaces, that was across all groups. That was number one right, like and awareness of where these trails even are. For me the f irst step was building relationships with groups like the NAACP, like AARP, like The Disability Rights Center, like Opportunity Networks and really saying “hey we’re looking to build this trail, we want to incorporate input”. We have not been at the table with a lot of these groups that we’re seeking to serve, and we acknowledge that. We’re late to the game with engaging with these communities. But we want to have this trail really serving everyone. And the best way to do that is to get input and so we built trust with these partners first over a t ime period, really meeting with them, talking with them about our plans, our intentions and then we did a lot of the heavy lifting for the events which is frankly how it should be when you haven’t been at the table. So, we said we’ll run the Zoom calls, we’ll provide you with a script, but we felt it was really important for the groups that actually work with said community members to really be moderators for the listening sessions. There’s no point in a staff member from The Nature Conservancy, who community members have never heard of, never seen, never interacted with, going into a community and saying, “hey we’re doing this cool thing. Will you trust me, and be vulnerable with me, and talk to me about your barriers to getting outside?” We understood that in order to actually have feedback that was coming from an authentic and vulnerable place of trust that individuals needed to have a facilitator that was from that community, that has a reputation of serving that community. So the moderators of each of those listening sessions were actually from those communities. Which helped us a lot because we were able to say “Hi we’re the Nature Conservancy, we’re running this Zoom call. We want to build this trail”, kind of show a quick draft of what we were thinking for the trail, give an overview of what the preserve is, the fact that it even exists. And then the moderator, who represented that group, was really able to take it away and ask questions around what the barriers were.
B - Yeah, I think that’s really smart. As Sheila mentioned she comes from the world of community organizing, with some mostly political splashes of color in there as well. For folks at home, that is also the world I come from, before landing at the Council and the other non-profit I work for, I come from the political campaign/organizing world as well. And I can’t just knock on a door and say “hey can you vote for my candidate, or come volunteer even”, take the extra step be vulnerable and volunteer your time to talk about my candidate with other voters. I would always start with “hey seems like we jive on a couple of issues that we talked about at the door. Can I grab a cup of coffee with you, can I get a lunch with you, and really dig in and be intentional about forming an organic relationship with that person. So that I wasn’t Blake the campaign staffer asking for a favor down the line, it was Blake my friend who happens to work for this campaign, asking a favor down the line.
S - Yeah, yup!
B – I really like that you guys are intentional with that process and centering the voices that needed to be you know front and center. S - And I do wanna clarify really quick that our process was not perfect, and I tend to preface a lot of my conversations about that point is that our process is not the gospel. We did create a guidebook for what we did because we received so many requests around “what was your process?” Even just things like “How did you identify a contractor?” just very little things right? So, we only have so much capacity. And we thought the best way to increase the accessibility of a lot of these trails or just make more all access trails in New Hampshire just generally was to put our process on paper. So, there is a downloadable guidebook on our website that we share far and wide because we can’t present to every conservation commission, every foundation, every nonprofit. So we do refer everyone to that guidebook which is extremely detailed down to the time, the staff time, the funding, every single detail that we did and we share that not to say this is the best way, we share that to say this is the way that we did it and if a conservation commission, if another organization can even take one or two little pieces of our process to benefit their process, that’s a win for us. Because we don't want everyone to do it the way that we did it, we understand many organizations can’t do it the way that we did it and frankly communities are 9 very different and not everyone should do it the way that we did it. But we felt that at least sharing our process in detail could help a few organizations and conservation commissions along the way.
B - Yeah, I think that makes a lot of sense, my go to phrase with most things in life is different strokes for different folks and if they want to take a few pieces of that and then build it into their plan that works. For the folks at home who maybe don’t know, although my postings here and there kind of out me, I am a runner by trade, I like to go running, I’m one of those crazy people who thinks that running twenty some odd miles on any given day is quote on quote fun. But, you know I’m training for my first marathon right now, that I’ve ever done and there’s a billion and one training plans right that float out there in the running world ether shall we say, and what works for one runner, may not work for the next runner etc. And I kind of look at all these plans and make a smorgasbord, which is another of my favorite words, and I piece together what will work for me knowing my body, my needs, my goals etc. and time consumption. And use that as a springboard to do my plan. So, it sounds like you guys did something similar with the guidebook on the website. And, folks can look at it, it’s accessible, and take what works and what doesn’t work, and build out their own. And for the folks at home when this episode gets posted I will do another post on our social medial channels with a link TNC’s website with the guidebook so everybody can readily access that. But as Sheila said, it’s on their website. We want to talk about, you mentioned awareness, and one of the hurdles you hear is “I didn’t even know this trail existed!” I knew the all persons trail existed, I did not know it was over 600 acres of land. I knew it was about a 1.2 ish mile loop if I recall our conversation a couple of summers ago correctly when I actually met you.
S - Yeah! Great memory, great memory! (laughs)
B - One of my many gifts, right? No just kidding for everyone at home, but I do have a decent memory. Talking about spreading awareness of the trails, The Nature Conservancy, and the DD Council and a number of other partners are involved in a pretty fun project this summer that I’m going to let Sheila talk about to spread awareness of existing all persons and all access trails. And I’ll let you take that Sheila!
S - I’m just so happy that the DD Council invited the Nature Conservancy on to talk about not just our trail and our process but about ways that we can all partner together. Not just groups that serve the disability community, but groups like conservation organizations or education organizations or housing organizations like how are ways, what are the ways that we can partner in innovative ways to really start making sure that our communities are beneficial to all people, and that includes green spaces. And so with awareness being the number one issue, I think probably next to transportation, they were pretty even when t came to barriers, we have obviously continued our partnerships with pretty much all of the groups frankly that we worked with to build the all persons trail. Because a big part of my role is not just building partnerships for the sake of building partnerships, I’m very against transactional relationships in my personal and professional life and so I always tell people I’m happy to meet you for coffee but I hope you know I’m going to be in your inbox a lot for the foreseeable future so I’m sorry in advance for that. And really building long lasting relationships and so something that we kept hearing is that it’s great that the all persons trail is there but not everybody lives in Manchester or near Manchester. And not everyone knows about other trails throughout the state because there are other trails. The Nature Conservancy is not the only organization that has all access trails. There were other organizations, like Tin Mountain, who came well before us and built an all access trail and I’m sure there are many others that I have a list of somewhere but don’t remember off the top of my head so really want to be sure that I’m not just centering the Nature Conservancy in our work to make nature more equitable for people and mitigate the impacts of climate change on communities. 11 But how do we help to collaborate with the greater community? Because the Nature Conservancy can’t build all of the all access trails in New Hampshire. We are incapable of doing that and after building that trail, so many people have said “when’s the next trail?” “Are you going to build another trail?” and we’re like, “actually we should probably take a step back based on what we learned, speak with our partners who actually work with and serve the disability community and say “what are the ways that we can be more effective and actually spreading awareness?” and increasing transportation to green spaces because those are the two big things that we heard.
B - Yeah like you can’t do the one without the other.
S - Exactly, it’s one thing to know that something exists, it's another to actually be able to get there. And then another thing even after that to even feel comfortable going there either by yourself or with others and so we’re going to be doing a really cool campaign in the next few months. Actually Blake, I have to give you credit for the hashtag or the name of the campaign which is #NHTrails4All, the number four, and so it’s really just an ad hoc coalition, so it’s not an exclusive coalition, so anyone who is part of an organization or an entity that serves the disability community and wants to learn more about this or potentially get involved and spread the word we welcome that. That’s typically how we work because the more the merrier. We are going to be highlighting either 5 or 6 accessible trails, it's really a pilot at this point, I will say Trailfinder, it’s run by UNH Cooperative Extension, is a great resource if you’re looking to find all access trails. Again, like many resources, nothing is a silver bullet so I’m sure there are things on there that could be updated in regards to what trails are actually all access and what are the conditions etc. But really our campaign, NHTrails4All, again in the pilot year, very much in its infancy, is looking to spread awareness about 5-6 trails across the state, not just in the southern tier, where a majority of people live, but across the state and say “hey it's the 33rd anniversary of the ADA, which is amazing, I’m a little shocked 12 honestly that the ADA is as old as I am. It makes me feel just weird about the whole thing.
B - As she outs herself with her age, so great (both laugh)
S - Yeah, yeah, but where are these trails in New Hampshire and making sure that we are highlighting them in different regions and not just paying attention to in Rockingham and Hillsborough County where a majority of the population lives because we know there are individuals with disabilities everywhere! Not just in Rockingham and Hillsborough Counties. And those individuals deserve just as much as anyone else to be able to know where are all access trails and be able to benefit from nature. So more to come on that but just really exciting to start spreading awareness.
B - Right and I’m very excited to be doing that with you guys! I think I volunteered myself as a guinea pig to check out a couple of the trails because I do love trail running, actually did it this morning, mild heat exhaustion quickly followed so for folks out there, when you get out there and do enjoy these trails, bring water bring a hat, bring sunscreen, you know all the things because it is toasty out there. But definitely look forward to posting from all our social media channels at the Council as we put this campaign together. You may get videos of me out on the trail, hopefully I look my Sunday best when I’m out there running but stay tuned on that. And just wanted to thank you Sheila for taking out the time to hop on and do this show with me and record and just shining a light on the real importance of the expansion of all access trails, constantly making them better because I don’t believe in creating something and being like “it’s great forever!” Needs change, people change, as is with nature, erosion, climate change, the trails change! So, there's improvements and updates that need to happen. So, thanks for shining a light on that and why the equity behind that is so important. And so, folks this has been That’s Inclusive! Podcast. You can find it on our website, I think this episode is getting posted in a couple of months I need to check with my higher ups as they say, my bosses and I believe you can also find it on Spotify which is kind of cool, I recently caved and got Spotify myself, I was an Apple Music guy and now I play for both teams I’m on Spotify and Apple Music. But you can find the episode there. And, I just want to thank you Sheila, again, from The Nature Conservancy in New Hampshire. Fun fact, I did not know you guys were such a broad organization, I knew you were in New Hampshire, but did not realize it was basically in every state in this country. That's crazy!
S - Yeah! I believe we are in 72 countries and territories so we’re out here but we tend to be very behind the scenes and more centering our partners in our work so we’re here and we’re always welcoming individuals to collaborate with us and give us feedback, we love feedback, good feedback, bad feedback and everything in between so please reach out to us with any questions or ways that we can improve!
B - Yeah, I call it in my life and in my work, bad feedback doesn’t exist just constructive criticism, with most things that I do. So, thank you everybody for listening in. Have a safe, happy, and healthy summer. Stay cool or stay dry depending on if we’re going to have months like June like we had here and just have a great rest of your Friday and a great weekend!
S - Thanks Blake, thanks everyone!
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 8: Ableism and Inspiration Porn
That’s Inclusive! hosts Isadora, Patricia and Vanessa discuss inspiration porn. What it is, how we identify it, how it distracts from addressing real barriers, and how it needs to go away.
Learn more:
Stella Young: I am Not Your Inspiration, Thank You Very Much
Excerpt from: How to talk about disability sensitively and avoid ableist tropes by Shruti Rajkumar
Episode 8: Ableism and Inspiration Porn
Episode 8: Ableism and Inspiration Porn
Transcript of video:
VB: Hi everybody. Welcome to That’s Inclusive! We have a fun filled day today. We actually have all three of our hosts in the room: Isadora Rodriguez-Legendre, Trisha Vincent-Piet (TVP) and myself, Vanessa Blais (VB). And we’re here today to talk about inspiration porn. IRL: The first question is – what is that?
TVP: Inspiration porn is the portrayal of people with disabilities or other uncommon life experiences that have been inspirational to able bodied people or other common referenced groups on the basis of their life experience. The term inspiration porn is by analogy with pornography in that the material is perceived as objectifying disabled people for the benefit or gratification of able bodied people. That’s the official Wikipedia definition. Thank you Stella Young.
VB: I’m glad that you brought her up because she was actually the introduction for me to the term inspiration porn. Actually, I was talking with someone, Deodonne, who used to be a Council member, and is now with the Disability Rights Center, and we were talking about inspiration porn but I didn’t have that language yet. And so she said, you have to watch this woman, Stella Young, and she has a YouTube video, which I will post in the show notes for anybody to watch, and that was the first time that I realized that there was actually a term about that weird icky feeling that I would get when I would see certain things that other people just said I’m just cold hearted and cynical so that’s why I can’t like those things. But I knew there was something deep down inside that was telling me there was something icky about it.
TVP: Right. I’m the same way. I hate it. I knew, even the kids, I hated seeing people with disabilities put up on stage and told – you can overcome your disability- and I would go, no. I have a disability and I need people to help me. It was so great to have a term put to it.
IRL: Yah, the example that I always think about is singing competitions like America’s Got Talent. And there would always be the person with the disability featured as just that much more inspirational because it was perhaps a deaf person who could sing really well. None of the other contestants got the same kind of recognition for their singing talent because they didn’t have a disability. And so, for me, I didn’t have a language yet on what that was but it was why, just because they have a functional difference are they highlighted as being special or especially noteworthy for their talent.
TVP: And that their voice is somehow so much better than everyone else’s because they can’t hear? It doesn’t make any sense. Except for when you consider that doing that brings more viewers and more money to-- IRL: Right. Which kind of brings us to another part of inspiration porn is the fact that some organizations will profit off of highlighting people with disabilities or people with other lived experiences that are different from other people as being inspirational and then using that as a tool to either raise funds or make money. Like I always think about the Jerry Lewis Telethon—I hate to bring it up, it’s such a sad spot in our history – where the intentions were good, but kind of how things went about that were all wrong.
TVP: It de-humanizes and objectifies people. Like when Jim and I go out and someone ultimately has to stop and say, oh it’s so great to see you out. As if we’re there to entertain them.
IRL: Or that you’re usually locked in a cage somewhere.
TVP: As if we have somehow beaten back our captors! And emerged victorious!
VB: Who doesn’t like to feel warm and fuzzy inside? Who doesn’t like to have that good feeling? And it’s kind of like a really easy way for people to get that shot of that feeling. It’s not malicious, necessarily. I think that when we talk about it and we introduce that idea to people, I think what is really difficult is for people to kind of like put that aside, their presumption of there’s nothing wrong with feeling that way and maybe look a little deeper into why do I feel that way and how is it affecting other people.
TVP: I have people tell me that I inspire them, especially in my gym. I always ask, what do you mean by that? I inspire you to do what? Because other people inspire me, right. People at the gym classy athlete. It’s a little more comfortable for me to be there. Sometimes it feels like people say that because they feel like they need to say something. When you see people with disabilities, you can just ignore us. That’s ok.
VB: I want to talk a little bit about the idea of using inspiration porn in a way that you create circumstances that are separate yet “equal”.
IRL: Wasn’t there a court case about that?
VB: Yes, there were a couple actually. But how, like you said, that there’s entities that profit from it, whether it’s fundraising or for-profit, and they will have certain events or do certain things and, I’m going to use Special Olympics as an example of that. They’ve been around for a long time, they can take it. They can take the hit. The idea that they created a separate but equal competition and now that our society is being introduced to this idea of what inspiration porn is and how it's actually damaging to people with disabilities. Like it’s hard to get 3 people to understand that even though they’ve been in the business for a long time, and yes, they did some really great things, it’s not throwing the baby out with the bathwater. We’re not telling people they’re terrible. But it’s time to get people to motivate themselves to change their model and get away from that concept and still be able to do good things for the disability community. But how would you go to a place like Special Olympics and be like, you have to change your model.
TVP: Right. After starting how many years ago? One thing I noticed, I forget if it was this year, but Good Morning America one of the shows was featuring Special Olympians on their show. They don’t usually do that. It was allegedly a huge step forward. And the way the interviewer was talking to the individuals, would you talk to a regular athlete like you’re talking to this person? You wouldn’t. So, don’t do that. VB: Would you talk to Bode Miller that way?
TVP: Right. Right. Obviously on a network TV show for profit, they’re making money off having individuals, adult individuals, that they’re talking to like children. And everyone is applauding it.
IRL: Yeh, that’s definitely a problem. I always like to say that most people are not athletes, are not champions, and are certainly not Olympians, right? So, I think that part of the issue is that the model really is putting people with disabilities in situations where they are treated like Olympians. It’s really great that they are doing things that they love and that they’re participating in athletic sports and things like that, but it’s because we don’t have community inclusion for those folks that this separate event exists. If we had more integrated sports teams, more universal sports teams, more community based activities where the expectation was that anyone from that community could participate, whether it’s bowling or golf or knitting or whatever it is, then we wouldn’t need this kind of special place where people with disabilities can be athletic. Because it would just be part of community-based life.
TVP: Right. And I think when a show has Special Olympic athletes on the show, they claim that it’s normalizing it, but in a way it’s actually doing the opposite. It’s not normalizing it because you’re not treating it as a typical sporting event. It’s treating it as something abnormal.
VB: First of all, you’re referring to them Special Olympic athletes. Why not just call them Olympians? Because they win Olympic medals. Or athletes? But there’s a lot of opportunities for these entities to learn about ableism and learn about inspiration porn. There’s plenty of people with disabilities who are out there who are talking about it. And there’s trainings being developed. There’s a lot of opportunities for people to be able to reframe how they see this and how they might want to change the way that they do things. But the hard part is giving up that warm and fuzzy feeling. Because when things are normal, now I don’t have anything to “inspire” me.
TVP: It’s a very addictive feeling. And it sells, in a clickbait society. Inspiration porn is very clickbaity.
VB: It probably sells a lot of advertising.
TVP: Oh yeah. Tons.
IRL: Thinking about how, just piggybacking on the conversation, what our role is in our own communities, in our own society, to really encourage and support the expectation that people with disabilities should be included. And then it’s not so inspirational. We can be inspired by a sunrise. Or working out hard at the gym. Sometimes I watch kitten or puppy videos and those give me warm and fuzzy feelings without exploiting or putting a person that has functional differences or a different life experience in a position where they are placed on this pedestal merely because they have that difference. And oh, look what they can do, when they’re living life on life’s terms like the rest of us. They should just be, and I use the word celebrated, because in my community I feel like we celebrate each other on a daily basis just for getting through the day. You didn’t hurt anybody. You weren’t mean when the cashier gave you a dirty look. And that to me is, for me, celebration worthy. And so I really think that part of the problem systematically is that we have been accustomed to just to not have that true, authentic inclusion. And so it becomes this special thing. And we use that word throughout this podcast. We’re talking about how problematic even just using the word ‘special’ is because really somebody who is living life on life’s terms, whatever their similarities or differences are, shouldn’t be deemed as special. It’s not something to continue to perpetuate this exclusion. TVP: It’s when it’s obviously for the benefit of people who don’t experience things. We can inspire each other. It’s part of my difficulty at the gym. People who are close to me. I like to be inspired or I don’t get my butt out of bed and go to the gym. I need to know that somebody’s going to be there that I can hang out and laugh with. But it’s not the same as me putting someone who’s not like me on a pedestal for my own gratification.
VB: When I try to explain to some people what inspiration porn is, I always say it’s like the sideshow concept. If you know the history of the sideshows, they claimed that they were giving these people a better life. What would happen to them if we didn’t put them on a box and sell tickets for people to come by and mock them? If you think of it that way, it’s a little bit easier for people to understand. It’s objectifying people with disabilities and it’s harmful to them. It’s not helping them. I think that’s another message that needs to be loud and clear to certain entities, organizations, businesses.
TVP: You can feature people with disabilities in advertisements. You can show that you made your product more accessible by having someone with a disability demonstrate that accessibility. That is not inspiration porn. That’s just getting the information out. That’s not trying to gratify someone who doesn’t have a disability.
VB: In my opinion, I think Hollywood is doing a great job of being inclusive, especially with characters with disabilities. I’ve noticed more and more that I’ll be watching a movie or a series and I’ll notice that a character has a disability and then I’ll notice, cause we’re sensitive to these things, I’ll notice that it’s never really mentioned or not used as a source of inspiration. It might be part of the story—
IRL: Yah, like it’s just a family member who just happens to..
TVP: If you’re using the disability as a plot device, that is inspiration porn. If the disability exists within the larger narrative and it’s just there, then that’s inclusion.
IRL: It’s not always clear cut and we also want to get that message across. That not everyone is going to be perfect every time, and not everyone is going to catch on as quickly as other people. We all just have to try to do better and try to do our best in really kind of dispelling this concept, this inspiration porn, when we see it and when we realize it made me feel a certain way. I think that that’s what this is and I’m going to call this out or I’m going to, I always like to provide education, teaching moments if you will. Where we can say, it’s not appropriate to clap for someone just because they’re a person with a disability who graduated from college. You wouldn’t do that for someone else who graduated from college. It’s appropriate to recognize that they got a college degree and to normalize that for lack of a better phrase.
TVP: What I like to do is I look at something and think, if this person didn’t have that disability, would this work? And if it wouldn’t work without the disability, and it’s not always inspiration porn, but I need to look more closely. IRL: We need to really just grab on to the concept that disability is a natural part of human existence and that we all potentially could experience a disability at any point in time and how would we want to be included or treated if we were just trying to live one day at a time. And some was like – good job!— TVP: When you’re just out for dinner with your husband for a romantic evening and somebody comes along and says “God bless you” and you have to say, well I’m an atheist.
VB: Or, someone we know very well, uses a pretty good example of when she talks about how her son, who has Down Syndrome, will be walking down the street holding his girlfriend’s hand, and people will be like “oh, that’s so sweet”.
And then she’ll say, if my other son were walking down the street holding his girlfriend’s hand, would you even notice?
IRL: It would just be a thing that people do.
TVP: It’s just what people do. You don’t need to comment. It’s fine.
VB: Or make a show out of it. TVP: It’s not about you. It’s not about how you feel about the situation.
VB: So any last comments Isadora?
IRL: I can’t think of any right now. Come back to me.
VB: I should mention that this is Pat’s second podcast today.
IRL: She’s a busy lady.
TVP: Not usually, but today’s been a busy day.
IRL: I think that one of the things that the DD Council does is to try to communicate that community inclusion is all of our responsibility. That we need to be willing to maybe be the first person to say hey, why aren’t there people with disabilities at this bowling group or at this community center or at this event, this gala. And bring that to light and really take on the role, a leadership role, in educating people about how to make spaces more inclusive, more welcoming for all people. Especially for people with disabilities that may have functional differences who may need ASL interpreters, they may need ramps available. I’m always shocked at how little thought goes into accessibility for different types of community events. Now it’s like, oh hey, let me point this out to you. But, I know it’s not intentional and I know that you are really trying but you inadvertently are excluding people by not having the availability of these things.
VB: And also, don’t let inspiration porn distract you from recognizing the barriers that people have to doing normal things.
IRL: Don’t believe the hype! Don’t get wrapped up in the warm and fuzzies. Watch some kitten videos!
VB: Thanks for coming ladies. It was good to talk with you. Like I said, I’ll put some references into the show notes. I’d also like to invite anybody who wants to come to the DD Council and talk to us about inspiration porn and how to eliminate ableism before Isadora and I retire. [retirement banter] IRL: I just want to say, it’s really great to have this platform to really talk about community inclusion. If anyone thinks of another topic that you think would be important for us to discuss, please feel free to reach out to us.
VB: Thank you for joining us today. I’m Vanessa Blais and this was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 7: Interview with Parent Advocate, Carrie Duran
Parent advocate, Carrie Duran and NHCDD Executive Director, Isadora Rodriguez-Legendre, talk about helping disabled young people navigate learning about sex and relationships.
Episode 7: Interview with Parent Advocate, Carrie Duran
Episode 7: Interview with Parent Advocate, Carrie Duran
Transcript of video:
Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Hi everybody and welcome to our podcast - That's Inclusive! Conversations with the New Hampshire DD Council. My name is Isadora Rodriguez-Legendre and I serve as the Executive Director at the NH Council on Developmental Disabilities. And with me here today is Carrie Duran, who is a Council member and I’ll let her introduce herself a little bit more. And today we’re going to be talking about sexuality and relationships for people with disabilities.
[Music] That was quite an introduction. So do you want to tell our good listeners who you are and what brings you here today?
Sure. It’s a pleasure to be here today. My name is Carrie Duran as Isadora said. I am a proud Council member – have been since 2018. I have a 12 year old daughter, Katie, who experiences Down Syndrome. I’m excited to be here today to explore all the ways that I can potentially support her in her development and her sexuality.
So, when you and I were talking about putting this episode together, we had a lot of good conversation about what we see as some of the potential barriers and issues in our system, especially for people with disabilities to access health education, sex education – to understand healthy relationships and all of the things that really we don’t talk about- we don’t talk about these things. They’re kind of taboo subjects. We’re here to kind of lift the veil a little bit and try to be a little bit uncomfortable in making sure that we have tools and resources for people with disabilities. And especially since kids are kids. They’re going to talk about things and they’re gonna talk about things with their peers in school about things that are happening. About how their bodies are changing and how their hormones are flaring and who’s cute
– According to my daughter everybody’s cute.
I think I was one of those girls also!
She wants to date everybody. One of the things we were talking about was, if we look generationally, from when our mothers, our parents, to when we grew up and now my kids, every generation has access to more and more information at an earlier age. So, my daughters have been able to access things on the internet and social media that I didn’t see until I was much older.
Right. Right. I think I told you when we talked, I used to hide out in the section of the library that had the books about the things because my mom was not bringing me any books. And so I used to sneak peek it at encyclopedias and books about the human body because I didn’t get that. But I heard other people talking about it. So that was the access to the information I had at the time.
I think for me it was Judy Blume. I can’t wait to bring my girls to see the new movie—we’re not here to plug a new movie – but there is a new Judy Blume movie out. But I can’t wait to bring my girls. But those books were really important. And talking about books like my first introduction into learning about my body and my development as a young girl was through a book. My mom was like, hey, you might be getting your period soon, here’s a book about it. Let me know if you have any questions. And I was like, what! What is this?!
Yah, talk about an introduction. So it’s really fascinating to me that in New Hampshire there is no statewide sex education curriculum. And we talked about that a little bit and I think you’re the one that brought that up to me because you found out through your girls’ school, right?
Sure. Sure, well, Katie’s 12 and she sees her classmates and her typically developing friends have boyfriends and they all have cell phones. She doesn’t have a cell phone yet. They have Instagram. She does not have Instagram. And they’re all relating on a certain level. And so then Katie comes to school and she’s trying to relate at their level. But she also doesn’t quite have the developmental understanding of the nuances of a boyfriend/girlfriend, or flirting or just friends. Or what’s the difference between a friendship with girlfriend. What’s the difference with a friendship with a boyfriend. It’s all the same to her—love is love. And she wants love and affection from her friends. She wants love and affection from boys. But she wants to get married and have kids and she wants everything that we all want. But her level of understanding is much younger than her peers. And I’m finding that at school, especially because we are a household of all girls – I have two older daughters who are teenagers – I’m a single mom, so there are four girls in the house—we’re not around a lot of boys. So, I can’t say “look at how she’s speaking to a boy” or interacting with a boy because we’re not in situations where I see her do that. It’s happening at school. And unfortunately, it's her team and her teachers feel like sometimes she’s not reacting appropriately. Whether it’s “Hey, I want you to be my boyfriend” and the boy might be uncomfortable and not know what to say. But for Katie, she’s not trying to make someone feel uncomfortable, she just see’s oh well they have a boyfriend and, they have a girlfriend, I want one, too.
Like, she’s exploring relationships.
Yes. Yes.
Trying to form connections which is so important when you’re a young person going to school.
It is. And, as a parent, I don’t want those experiences for Katie for her to feel punitive. That she’s wrong in her understanding at her level. She’s not wrong. She’s a whole human being whether she has a disability or not. And she deserves the same happiness that her peers have in relationships. But, how do we bridge that gap for her? And how do we as parents assist the schools in bridging that gap for her?
I think that that’s a really important point. And I was surprised to learn that New Hampshire has an opt out law so even if there is health class or some sort of educational programming at school, parents can say, no, I don’t want my child or my young adult to participate in that lesson. Which was a little bit shocking to me because an assumption I have is that probably most of those lessons are about abstinence. And so why wouldn’t you want your kids to learn about abstinence and safe sex and also the changes in their bodies and the hormones and all of the things that are impacting us when we’re young and we don’t know what’s going on. There’s a lot of changes happening and you would want to learn. I think you would want your student, your son or daughter, to learn about what is important-- just the physics of it, right? The physical changes. So that they don’t feel like wow, they’re living in an alien body now.
And, my daughter Katie, when they first started to have health class, she’s in the 6th grade now, it was about wearing deodorant and you need to shower every day. And when you have a child who has sensitivities and doesn’t enjoy having her hair brushed let alone her hair washed, you’ve got to make sure to take a shower, you’ve got to wear deodorant, you’ve got to brush your teeth. These are all sensory things. And I did thankfully with my school district, I did ask the health teacher at the time—can you break down these lessons a little bit more and give me some support materials so I can back it up at home? And thankfully, they did. But I had to, as a parent, seek that out because there wasn’t anything available. It was certainly extra work for the health teacher to do that and I’m so thankful that she did. But now moving on to the next level where Katie is exploring those relationships, she does want to have a relationship, there isn’t any material available to break down for her level of understanding. So, we’re kind of at a crossroads right now. As a parent, it’s already, as we talked about earlier, it’s already so hard to have those conversations with your kids. Whether you have a son or daughter, it is so difficult. And you don’t want to embarrass them and you don’t want to say too much. But you want them to be empowered and have the facts. And, so that when they are exposed to something on the internet or social media or on the playground or with their friends, they already know the facts.
Right. It’s like you started saying, they have access to way more information than we had access to when we were their age. I can’t imagine what my parent’s parents did for educating their sons and daughters about sexuality and relationships and how to be safe and all those other things. Because we live in a culture of just, what I see is, people have blinders on still. And a lot of times, it was the truth in my family, if you don’t talk about it, it doesn’t exist, right? And so we forget that this very real place where we’re at – where information is everywhere, everywhere. And, even when you have parental controls, you were talking about that earlier. You can’t know whether everything is safe that they’re watching or listening to or engaging with in some way.
I just remembered a moment that broke my heart. Kind of on a different topic but it was when my younger girls learned there was no Santa Claus. They were on the playground and they were 2nd grade and it was someone’s older brother told them and they came home crying and I was like “Oh my gosh! What do I do?” They were decimated. They were like “Is this true? Is this true? Is it really you who gets the presents?” And I said, “You know Santa Claus”, I totally lied, I felt terrible because I didn’t know what to do. You don’t want to lie to your children but you want to keep that wonder, you want to keep that innocence that is a balance of what we’re talking about, facts and keeping them safe. What I came up with was Santa comes to your house as long as you still believe in him. And when you get to a certain age, and you’re older and you don’t believe in him anymore, your parents take over.
That’s pretty good!
They bought that for a few more years!
It’s kind of like their first ushering into adulthood, right? All of a sudden it’s like, oh man, everything I know is questionable now. And then you had mentioned that their bodies start changing and there’s all of these things happening and they’re nervous, they don’t have all the information. I want to make sure they always have the facts so that they can always make the right decisions for themselves. And, after that whole incident with Santa Claus, I said “if any of your friends ever share something with you and you have questions about that, you can come to me and I will always tell you the truth. It might be really uncomfortable, but I will always tell you the truth”. For Katie, my 12 year old daughter with a developmental disability, I can’t always tell her the exact truth. I want to be able to.
All of the gory details.
Correct.
I have to make sure, is it at her developmental level? But how do I balance that, here’s my question, so to all of the listeners, all of the parents who have been through this before, how do I balance being cognizant of her developmental age, what she’s learning who she is, with being respectful of who she is as a human being and respecting that “so what that she has a developmental disability?”. She deserves to know about having her period. She deserves to know about having a boyfriend. How do you start a relationship? How do you end a relationship? As we talked about earlier, and how are you safe in a relationship? How do you show affection? I don’t know how to do that—I admit it! I don’t know everything.
I think one of the questions that you had was kind of what resources are available because the schools don’t have the resources. They don’t take the extra time, like that teacher did, to see what’s out there and to really break it down in appropriate chunks of information that are not only digestible and easy to understand, but then you can go back and talk with your family about. And, for a lot of families, they’re involved in decision making. We talk about decision making being one of the things that we need to really educate young people about like—what is a decision? How do you get there? How do you weigh pros and cons? What happens if you make one choice over another and can you change your mind about that? All those things that no one was talking to us about, but that we recognize now, looking back, as this is the foundation of the choices that we make in life. We need to be able to understand what the consequences of our decisions are and what the potential benefits are of those decisions, too. And that’s like a big focus in a lot of the sexuality trainings. I’ve taken the Train the Trainer for a sexuality education for people with intellectual and developmental disabilities, and I know that those are the key pieces of the early education for folks, or later because didn’t get it when they were a young girl, like -- how do I find friendships? How do I go from being a friend to a romantic partner? How do I go from a being a romantic partner to being in a partnership around marriage or living together? Living together is a whole next level thing. And then, if it’s not working for me, how do I, in a very healthy way, end that relationship? And how that is ok too. And you’re able to be ok with that happening, because it’s a part of life. So all of those things I agree that it takes extra effort to find those resources and to really be person centered about how we break that down for people with lived experience with disabilities and whatever their disability is. I think that I’m a fan of integration and inclusion and I think when people learn together, everybody learns the best, right? And so I wonder about how we can be more consciously bringing resources and tools and strategies for school districts, for parents, for school social workers, for school based support teams to really be able to address the needs of students with disabilities and not feel like weird or that it is extra or so careful and tiptoe around these topics. They’re going to learn about it, right? At some point, Katie’s going to have a cell phone. She’ll be able to look stuff up, right? Look up what she thinks is the hottest guy. She has to be prepared. She has to be prepared to understand how to make choices that are healthy and choices that are in her best interest, right?
Another question perhaps I have for you and also for our listeners – how do you educate the people around her, her fellow students and her teachers and the community, that just because she has a disability, does not mean that she’s not wanting that acceptance, wanting that connection. And how do we help Katie be safe with those interactions? God forbid, down the line, we don’t want her to be taken advantage of because she really is seeking out that connection? But how do we help her peers to understand that she is deserving still of having a boyfriend. Just because she has a disability doesn’t mean she’s not a whole human. I keep going back to that. I think we have a tendency in our society to treat people with intellectual disabilities as if they stay childlike forever and that they never grow up. They have a Peter Pan syndrome and, that is not the case.
That’s one of the other foundations of sexuality education is that you may feel as though the individual isn’t at the cognitive level to understand certain things. But, guess what? Their body is still changing like their non-disabled peers and they’re having the same urges and the same feelings. And, it’s really important that we provide them with information that this is typical for people at your age, go back to the age, to go through these things. And then temper the cognitive part of that of how we can make healthy choices, how we can deal with our urges, how we can—because you know, I won’t get gross, but we’re all going to at some point, whether you have a disability or not, have questions that are uncomfortable for other people to answer. It’s not necessarily that the person with the disability is going to be uncomfortable, it’s that who ever they’re asking will be uncomfortable and not know how to handle it. We have to be prepared and we have to be brave. And we have to really talk about the biological development, because that’s an important piece of what impacts our social and emotional development. But then talk about those differences those social pieces and how you make friends and how you can go from being friends to being romantic partners and all the things that come with that. And then the emotional piece of “What does it mean to be in love?” and “How does that feel like?” and “What happens when you’re not in love anymore?”. That’s a huge thing for me. We don’t teach people, we don’t teach young people, one, that it’s ok to break up. It’s not the end of the world even though it feels like it when you’re 12, right? It’s a part of the experience and that it’s perfectly alright to change your mind and to not get stuck in a relationship where you don’t either feel valued or you just don’t feel like it has that same fire anymore. And that’s important.
And I think that whoever is the adult, or guardian, or friend or sibling or whoever it is, like when Katie grows up, I want those around her to trust her as an adult to make those decisions for herself. But be there to guide if needed. But that the goals for herself is that she wants to as I said get married, have kids, she wants to live on her own, she wants to go to college, she wants to drive a car. She also wants to be a doctor, dentist, stylist, astronaut – all those things. She’s gonna be busy. She’s a whole, whole person. I know we don’t have all the time in the world today and maybe this is where we come back, is where does the LGBTQ+ community fit into this conversation? Because Katie’s 12 and she already has questions. When she sees someone—she’s say is that a boy or a girl? She already asks those questions. So, we’re talking about where do we find resources to help a 12 year old girl with Down Syndrome understand her sexuality and relationships? But where do we find resources to understand where the LGBTQ+ community comes into those questions and help her with that?
And, that’s definitely part of that exploration as young people like we explore. Whether we learn from our parents or not about the choices and the options out there. We live in a society, thankfully, that really is embracing folks who are nonbinary, folks who are trans, and we really need to be able to present those. If somebody with a disability is having those feelings and they aren’t exposed to that at home or at school, it’s just so alienating, right? To be the only one or to not to have people you can talk to about that. I think it’s super important, especially for people with intellectual/developmental disabilities, to also have the ability and the freedom to explore. What do they like? What do they not like? What are they attracted to? What are they not attracted to? How do they want to dress? How do they want to present outwardly? It’s all so much the fit we kind of take for granted as part of the teenagers’ development of their identity. Because they’re exposed to a lot more today than they were before. But if people are sheltering their individual with a disability, the potential there is, and we hear about it all the time, now you have increased rates of suicide for individuals with disabilities who identify as LGBTQ just like you have increased rates of suicide for people without disabilities that identify as LGBTQ. And that parental acceptance is a huge piece of that. And we need to be open and honest with people, whether or not we identify in the same way. Again, it’s one of those really taboo topics. To your point, kids have access to all this information, all of these resources, all of this social media. We can touch briefly on the social media piece before we kind of wrap up because that is a huge impact that we didn’t have to deal with when we were kids.
I had those ABC Afterschool Specials—that’s how I learned about teen drinking and all that kind of stuff. But we didn’t even talk allot about that with our friends. It was just “Oh, you’ll learn about that when you’re older” and then when you’re older, you don’t have the tools to handle these things that come up. I want to create that safe space for my daughter, Katie. So that if she comes to me one day and is like “I want to get married, or hey, I just want to live with a person, or I just want to go to the movies with them, but I want to kiss them-I don’t want to kiss them-I don’t know if I want to kiss them. Should I ask them? Whether that is a boy, whether this is a girl, whether that’s a trans person, a non-binary person. I want her to just feel safe to just be the person she wants to be and I want to provide an outlet – a safe place as her mom to have those conversations or not have those conversations. But at least she knows she can come to me. It might be really uncomfortable for me to have those conversations as her mom, but at least she’ll know there’s a space for her to do that.
And that you’re always going to support her true authentic self, whatever that is.
As a doctor, dentist, stylist, astronaut—whoever her true authentic self turns out to be. The sky’s the limit.
That’s fantastic. The hope for me is that’s the best we can do. We can strive to be better than the previous generation at just supporting people and embracing this person-centered and self-determination in our society for people with or without disabilities to be whoever they want to be. I think it’s so important especially with social media because there’s a lot of pressure. There’s always a lot of pressure in the media with body types and what should be the model of a relationship—two and a half kids and a dog and a picket fence and all those things…
I’m a little older than you but we’re about the same age. I was telling the girls when I was their age, my older two, they’re 16 almost 17 now, and I said when I was their age, yes, I wanted to go to college but really my big goal was, I wanted to get married and have kids and have a house and have a car and like to me, that was the ideal. I didn’t even think past that. And I got married at a pretty young age. Now I have three beautiful kids and I’m very blessed but I shared with them – don’t feel pressured that you have to be in a relationship, that you have to get married and you have to have kids. I tried to let them know if you do, that’s great I’ll be the best grammy ever, and I will be so happy – but wait ten years please. But if you just have fur babies, you just have fur babies, too like – there’s no pressure from me. As a woman, there are other pressures that things you have to live up to in a societal fashion. And I keep trying to tell all my girls, you don’t have to live up to anybody’s expectations except the for ones you have for yourself. When you have a child with a disability, how do I remind her that every single day that the only expectations that matter are the ones she has of herself and just by continually letting her that I love her, I’m proud of her, and home is always a safe space to have those conversations. There’s no magic sauce unfortunately—I wish there were! – but again, if we go back to resources…it’s great that you and I can sit here and have this conversation and bring awareness but if somebody listens to this and then decides “Hey, I want to find a resource”, I’m going to ask you a question, Isadora. Where would you recommend that they go?
It really depends on the topic and it depends on the audience I want to say. There are some resources available for adults with intellectual and developmental disabilities to kind of learn more. We talked about sexuality education being out there and available. I would say different resources for school districts talking about how do we bring more positive messages, even just about identify, into schools. It doesn’t have to be about sex, it doesn’t have to be about all the things that make people uncomfortable. But, really about being your true authentic self. What is consent? What are healthy boundaries? What are healthy choices? I think a lot of times people get hung up on the sex part, right? It’s really like relationships are a lot more than sex, right? And it’s really important to have all those tools to help inform that latter part. I think we’re moving towards that, moving toward having more resources available. We’re kind of in that paradigm shift I think where people are becoming more aware that this is a major issue, especially in a society where there are still huge divides in gender expectations. And, in not accepting of people who have differences. We’re moving toward a world where that’s more typical. What we’re talking about here is moving the needle in bits and pieces and making sure that we’re giving people information about just that they are valued and they are important and that they matter and their opinions matter and their thoughts matter. Supporting that in some way. It’s so nice to hear how welcoming and how transparent you are as a parent. Understanding that this is challenging but let’s talk about it anyway. And I want you to know that I’m there to talk about it, even though it’s uncomfortable for me and probably for you, but I’m always going to support you and who you are and help you overcome obstacles in your life. That’s the best we can hope for.
Absolutely. Unfortunately, no one said parenting was easy.
You didn’t get the book?
No, I didn’t get the book. I think there are a few books – I should have read them. Being a teenager, being a young person today is way more difficult certainly than it was when I was growing up, when you were growing up.
And we all just do the best we can. ‘Each one teach one’ is one of my mottos. I learned something I want to share it with other people because it’s worth them knowing it, too. So that we’re not all just walking around in the dark.
And was it Maya Angelou that said, “When you know better, you do better”?
Yes, that’s right. You do better. So, I want to thank you for coming on the show and for exploring this topic.
You’re so welcome.
It’s such an important issue. And, I think that if I can just share that there are rainbow support groups out there which are specifically for individuals with intellectual and developmental disabilities who identify as LGBTQ+. Your people are out there and you can be supported and you should be supported in all of the ways that make you who you are. We will be working, the DD Council will be working, on exploring and supporting that community as well. Because it’s so important that people with disabilities to have a place where they feel safe.
And I would also recommend that if there are conferences out there that perhaps Isadora is doing a training at, or another organization there are wonderful trainings out there. I think it’s been since before Covid you had a chance. But hopefully we’ll see you out there. It’s a wonderful class—I’ve had the opportunity to take it myself and Isadora is a wonderful trainer so I encourage everyone….
I get around. Usually it’s people like you who are volunteering me for things.
Well, we wouldn’t do it if you weren’t amazing. So it’s just been such a pleasure to be here and bring my personal experience of what I’m going through with my 12 year old, vivacious 12 year old, and just get some different perspective on it. I can’t wait to hear if there’s other parents and folks who have any advice for me.
Feel free to reach out to the DD Council if you want to learn more about anything we talking about on today’s episode or if you want to share information with us also. We’re always open and we are welcoming of diverse perspectives and want to make sure that people have an outlet to really share those perspectives.
Absolutely. Well, thank you again Isadora, so much.
Have a good one.
This was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 6: Interview with Jean Crouch, Chair of the NHCDD representing the Department of Elderly and Adult Services
Jean Crouch talks with Patricia Vincent-Piet about becoming a council member and the importance of having healthy aging issues at the table.
Episode 6: Interview with Jean Crouch, Chair of the NHCDD representing the Department of Elderly and Adult Services
Episode 6: Interview with Jean Crouch, Chair of the NHCDD representing the Department of Elderly and Adult Services
Transcript of video:
Hello and welcome back to another episode of That’s Inclusive! from the NH Council on Developmental Disabilities. I am your host today, my name is Patricia Vincent-Piet. I am here with Jean Crouch, our Chairperson at the Council. She also works as a Supervisor at the Bureau of Elderly and Adult Services here in New Hampshire and has some pretty interesting perspectives on aging and developmental disabilities. So, we’re just going to get right into it. Hi Jean. Welcome for coming.
Well, hello Pat. That you for asking me. This is such a privilege. I’m so happy to be here today to share my thoughts with you.
Yah, I’m really excited that you could be here. My first question is really simple: How did you end up becoming a member of the Council?
Well, let me tell you. This was about three years ago, 2019, as you know I work for the Bureau of Elderly and Adult Services and we actually shared offices with the Bureau of Developmental Services. And a past Council member, named Jan, was looking for somebody who was interested in applying from the Bureau of Elderly and Adult Services and I said “I am!” and so my supervisor agreed. So I filled out an application and I submitted it and I was appointed and I was voted in. So, here I am! Well, we have been so happy to have you. How long have you been with the Bureau?
I’ve been with the Bureau about ten years, but I just want to go back on something that I noticed as I was waiting for the process, for the application to be finished. I thought, “Well, I think I’m going to stroll through their website” which is exactly what I did and I found the five year plan, which is actually not the current plan but the previous plan. And I noticed, hmm, there’s nothing about healthy aging in this plan. And so I was really very excited, soon after I joined the Council, that I had the opportunity to join the development committee for the five year plan and I was actually very happy to bring healthy aging to the table. Everyone gets older.
Yes, healthy aging is a big issue. I’ve noticed that it’s odd because healthy aging is such a big issue. You hear people talking about it all the time. But in a way, a lot of the things that the media and the public talk about when they talk about healthy aging, isn’t really accessible. Like, one way to stay healthy is to walk. What if you can’t walk? Thinking about how to age healthy when you always had barriers in the past.
Exactly.
It’s a really important thing to talk about. What made you decide to take a leadership position at the Council?
Well, I very much like to support and assist in building capacity within the community. During my first three years I noticed, “Oh my goodness. How much talent is around this Council table.” And I’m like, I really would love to play a role in sort of building helping folks build their personal strengths. Because personally I would really like to see individuals with lived experience and who really could lead the Council to where it needs to go. So, I thought, “Why not throw my hat into the ring to be a Council member and maybe I can have a little say in that. And again, I can’t tell you how much talent I see around that table.
Right. So you were elected Chair, what last fall?
Yes, this past October, 2022.
Time has flown. What’s something you have learned about the Council since you’ve become Chair?
Well, I learned a lot actually. It’s been quite an eye opener. First of all, there are so many moving parts within the Council and there are so few staff people to make that happen. So, when I was on the Council, there was a lot of talk about people need to participate and need to be a working Council but I can really see now how very important it is that our Council members are really working and participating in different areas that we’re trying to work on. It’s really not about having ideas, it’s about really putting those ideas into actions and that’s imperative for the success of the Council.
Right. What are some ways, can you give me an example of a Council member who has put an idea into action?
Me! I would like to say our Vice President, our Vice-Chair. He and I have worked a lot together and he has actually grown into quite a gentleman and quite an action oriented person. There are a couple of others that I reached out to as Chairperson thinking maybe I’d have a little bit more, like, “that’s a wonderful idea. So, how are you going to do it?”
I’m so glad to hear you say that. Because there are a lot of good ideas, but being a part not only coming up with an idea but being a part of bringing it to life and not relying on others because we do have a limited staff. What do you think that Elderly and Adult Services has in common with DD Services?
Well, I think we have a lot in common. And I’d like to talk a little bit about that.
That would be great.
Well, we both have workforce issues that have really increased isolation with the folks that I support and has affected some critical care needs of the folks that you take care of as well as isolation. We’re doing the same thing from maybe from a little different of a population. We combat isolation, especially through the pandemic and it’s been horrible especially for both. I know that many of the folks with developmental disabilities had programs and they lost it. It’s like all of a sudden, over night, they lost it. And there are a lot of individuals that I support, who are aging that suddenly had no one to come in and help them. And I think we have that in common. For sure, we were both looking at re-framing the words that we use to describe a person. Re-frame language that implies negative stereotypes that both of us experience and combat against. We all age. Often groups are looked upon, the groups that I support, and folks with disabilities, is being needy--draining the system. High cost of care. And that’s how they look at us? Wow. And we both promote a sense of feeling that we’re contributing. That’s very important to succeed in life, to feel like you’re giving something. We both promote a sense of belonging and value. We promote and protect rights and dignity, facilitating full participation in society for the folks that we support. I just want to go back to language a little bit. You experience ableism and we experience agism. And there’s a parallel for sure. Like with the elderly, it’s elderspeak. And with folks with developmental disabilities it’s not person first language. That’s a big battle we have ahead of us! So, we should do it together.
Has there been any conversation within the aging community about how to address agism that you know of?
Absolutely. I play a big role in that. As a matter of fact, the first step that we are actually at the Bureau we’re doing is re-framing the way we speak. We have pamphlets all over the place that talks about how pathetic it is to get old. What is wrong with that picture? We have to write a lot of grants and the more you say that you’re just miserable and just so lonely and you just can’t do anything, the more money they give you. Wrong! We try to put into our proposals the positive spin on it and how indeed you can build upon this positive. It’s re-framing the message that we’re giving.
That’s great. Now that you mention it, I even think of a lot of the pictures of older people. You don’t see vital, active older people, or if they are active, they are always ambulatory. You don’t tend to see many older people who have a disability depicted in an active, happy way. That’s a big job that you’ve got to take on.
And, also too, to sort of address someone with a disability who is aging, that’s a whole nother ball game. And actually you and I chatted the other day and you sort of put a bug in my ear and I did some research. And there’s a little bit of research on what happens. Because there’s a lot of things that happen to someone with a disability and we need to start thinking about that today.
Right, I think about how the aging for someone who has an intellectual disability what happens when they begin to experience cognitive issues. That’s not something I’ve seen or heard anything about. We really need to educate our medical professionals. Because you’re talking about someone with a cognitive disability and let’s say they start getting dementia. The physician oftentimes goes “that’s nothing”. And, that’s wrong.
How do you differentiate between an intellectual disability and cognitive decline? And people who know people with an intellectual disability can spot it easily. But I’m afraid that most of our elder care system, they are not equipped to differentiate and give people accessible ideas of ways they can get accessible treatment. Do you see a difference between DD services and elderly and adult services?
That’s a good question. I believe everybody’s different. But yes I have. And I’d like to kind of share that with you. Many older individuals really are very age-ist. They speak very negative about themselves. They’ve really bought into the bias of the community or their own implicit biases. Within the DD Council membership and I don’t know everything. But I only can really comprehend what I hear, I don’t see that in the membership. I don’t hear the members, the folks with lived experience with intellectual disabilities, really talk negatively of themselves. And I find that so refreshing. But then again, I don’t know how people feel deep inside I only know what they express. And I think that’s a positive. Maybe I can learn from that and how to promote that within the population.
That’s really interesting. You’re talking about what’s called internalized ableism. I know personally I have a lot of internalized ableism. Jim gets very, my husband who has cerebal palsy, gets really frustrated with himself. I think there’s a little more internalized ableism going on than is always obvious, but I never really thought about internalized ageism and how it’s – I’ve been reading this book called Disability Pride and it’s about the changes in the disabilities rights movement since the Americans with Disabilities Act. And how people born since that Act passed have a much different view of disabilities than those of us who are old and were born before. They are far less inclined to internalized ablism. Looking at internalized ageism, it’s really important to get people to think about that. People that Jim is related to are like so afraid that they are going to have to use the wheelchair, even though they’ve known Jim for sixty years. You can use a wheelchair, it’s fine! It’s such a weird thing. I’m hoping that the post-ADA generation will be less agist because disabilities is so much more open than, like my generation, General X and the Baby Boomers are.
That’s my generation.
You must be at the tail end there Jean.
Yes, actually I am, as you know, I am in the older group. I actually, just to share with you, I experience a lot of ageism.
Really? Yes, absolutely. I had this eye doctor, not very long ago, it was a new doctor – she was about twelve. Anyway…
She was about twelve?
Well, twelve and a half. Anyway. She kept calling me ‘dear’.
Oh no.
And she kept calling me ‘dear’. And I’m like “Just ignore her Jean. Just ignore her Jean”. I couldn’t ignore it and so, I said, kind of fell out of my mouth but I was so angry because I kept going back and holding it in and I said to her, which is really not like me cause I’m pretty easy going, I said “do you call all your patients ‘dear’ or just your older ones?” and I just felt awful that I said that but then I never went back to her.
But the fact that you felt awful about that is sort of a little bit about internalized agism. You don’t feel empowered to speak out –
Exactly -
when people are agist against you. People call Jim ‘buddy’ all the time.
See, that’s so disrespectful.
Even people we’re close to and care about a lot still call him ‘buddy’. So, anyway, the last question I have for you is what do you think people should know about the Council?
Well, our purpose is the first and foremost thing I’d like to talk about. We promote dignity, full rights of citizenship, cultural diversity, equal opportunity and full participation for all New Hampshire citizens with developmental disabilities. The Council creates and follows the State Plan – every five years to set goals to address the most important issues facing people with developmental disabilities in New Hampshire. We work to remove barriers and promote opportunities for folks. And lastly, I want to share, well not lastly, I could keep on talking, we at the Council have a fabulous, fabulous website. So I really invite folks, please take a stroll. That’s www.nhcdd.nh.gov. Please know we are a resource and we are here for you.
Great. Well, thank you so much, Jean, our illustrious Chairperson. I’ve really enjoyed having you today. Thank you for sharing your perspective on aging and developmental disabilities. It’s something that we just don’t talk about enough. And we need to find ways to stop making it a private conversation. So, thank you so much Jean for coming.
Thank you. Thank you very much, Pat.
This was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 5: Interview with Arielle Van de Water on the Intersection of Developmental Disability and Mental Health
Arielle Van de Water and Isadora Rodriguez-Legendre discuss the intersection of autism and mental health and the value of having people "in your corner" while being your authentic self.
Episode 5: Interview with Arielle Van de Water on the Intersection of Developmental Disability and Mental Health
Episode 5: Interview with Arielle Van de Water on the Intersection of Developmental Disability and Mental Health
Transcript of video:
Welcome to That’s Inclusive. Today I am here with Arielle Van De Water, who is a former New Hampshire DD Council member. I am Isadora Rodriguez-Legendre. On my good days I am the Executive Director of DD council. And we are going to talk to Arielle about her lived experience as a person with autism and mental health needs. Hi, Arielle.
Hi, how are you?
I’m good. Tell us a little bit about yourself and about your advocacy journey.
Well, I started out learning that I was atypical in towards the end of high school. It wasn’t until later on that we learned that it actually had a name. It was around my 20s that we learned it was autism and a little earlier on we learned that I had some mental health issues.
So, that’s pretty late to learn about yourself. Something that probably impacts a lot of the areas of your life. How did that feel?
Well, in the moment it was pretty scary. You didn’t know what was going on. You knew something wasn’t right, but you didn’t know what. Once we finally had the name for it, that gave it, that gave me power. I had something I could research and look into. I knew what I was facing and how I could address it.
Yeah, that’s great. I mean and that’s a lot of people’s story revolves around having the awareness to then be able to advocate for themselves. So how did you have to advocate for yourself?
Well, it’s sometimes hard to get services as a person with autism but I was able to work with my parents and the people at Community Bridges and with a therapist and I was able to slowly amass people and supports in my corner until I was able to start taking steps forward in my life.
So, tell us, tell me a little bit about who those supporters were for you. Who those champions in your corner were.
Definitely, my mom and dad. Even when I was not sure and was unsteady on my feet, they were there in my corner making sure that I was the one making the choices on where I wanted my life to go. I also had supports through a couple of therapists, specifically Ken Potter from Warren Street Family Counseling, he was always in my corner. And I have had lots of help through Elliot Behavioral Health, 1 they were always trying to help me figure out what worked, what didn’t work. And all in all, it has helped me got on an even keel.
Yeah, that’s great. So, I had asked you before we started kind of what is a message that you would want people to take away as part of this podcast? So what is something you want people to know?
There is hope. You can achieve success as you define it. It’s going to take some trial and error. You are going to fall down a few times, but it will be worth it in the end. I mean, it took into my 30s to really start getting in the groove of things, but I think I am finally living a life I can be proud of.
That’s so fantastic. Tell us a little bit about what that life looks like today.
I am working full time with a company that understands, and not only understands what I am going through, but appreciates the contributions I make. They are willing to give me more or less work to balance out what I can give at any given time. And it’s great.
That’s fantastic. And, you also had another excellent thing happen recently. What was that?
I recently graduated from Southern NH University with a bachelor’s degree in data analytics. I’m very proud of that. I’ve worked for a long time to get that one. That’s great. And so, what would your message be to people who need supports but who set goals for themselves? You’ve set a lot and accomplished a lot of goals in your life. I think people would want to know a little bit more, we can dig a little deeper, in how you did that and what were the tools and strategies that you used to be able to accomplish those things?
At the beginning it was trial and error. I had a lot of As and Fs in my classes. I was slowly through that able to figure out what worked for me and what did not work for me in studying. And I was able to build up that repertoire of skills and coping strategies. And, as I developed later mental health issues, I was able to use that slow learning and coping skill mechanisms and I was able to use those to build up my arsenal of tools I had to work against what I was facing. And using those, I was able to make my life easier. Like, sometimes I would deal with psychosis. I learned that using a digital camera, I could, even without a sim card, I could just take a photo and whatever I was seeing in my eyes and my brain, it would not show up on the lens, it would not show up in the digital photo. And using that, I was able to slowly get more control over my visual experience.
Yeah, I mean that seems like a very simple way. 2
I mean everyone has a phone now on themselves now a days, and every phone has a camera on it.
Yeah, I mean it is a cool way to check your surroundings, and to make sure that you are doing okay. Whatever that is. I think that is a great strategy. I wonder if there’s more you can tell me about how your mental health needs impact your dayto-day life and how you found supports to help you with that.
Mental health is something you have to face every day. Depending on what you put in your corner, it can get easier and there are going to be times you’re in remission and everything is going well. That means everything you have working for you is working. Don’t get rid of it. Just because things are going well means your supports are well in place you are doing well. Don’t get rid of the supports. Don’t cut your legs from under you once you have it on even keel.
Yeah, I mean I’ve heard that so many times from people where they’re doing great and so they may stop going to therapy or taking medication and then they end up kind of going backwards in their experiences and having consequences of changing, what you’re saying, “Don’t change what is working”.
Exactly. If you find something that works, stick with it. It’s not going to hurt you to keep it on for an extra month or two beyond what you think is necessary. And just because something is in remission does not mean it is gone forever. I hate to say this, but a lot of times mental health is a lifelong journey. But you’ve got this, honestly, and you can keep going. It may be tough. I don’t remember who said this but, if you’re going through hell, keep going. You’ve got this.
There’s a light at the end of the tunnel.
Absolutely. The great thing about things like developmental disabilities or mental health needs is that you don’t have to do it alone. You can build a team of supporters around you, that get you, that understand what you need, and that really have your back, when you’re not at your best, they can hold you up and help you walk through those fires. Right?
Absolutely. 3
Is there anything else that you want to talk about related as a person with lived experiences with autism? How that impacts your daily life and how you would want other people to understand either what your needs are or how they can improve their experiences with the world?
It is hard to separate autism and mental health-- it is all one person. The skills that helped me with autism also helped me with other things. Like, social learning does not come naturally to me. I wouldn’t automatically know the person with the nice handbag and the candy does not want to come and say hi to me. So, you just learn. You take things from a basic level of ‘I don’t know this and what is there to learn’-- there are times that I catch onto social cues nowadays faster than people who are defined as neurotypical. And that’s practice.
Yah. That’s great and that is a great message is that for anyone you can’t automatically understand everything.
Just because it does not come naturally does not mean you won’t get it eventually. You can learn anything. You just have to put your mind to it and use what strategies work for you. If flash cards are your thing, then make flash cards with social examples. If you learn best auditorily, there are lots of audiobooks.
Yeah, and I think something that you said that is so important is that it is a practice. I think about things like meditation or Tai Chi. Those are the things that I know that are talked about as a practice. It goes for anything else too, right, so how do you practice?
Well, I put myself out there in social situations. I play dungeons and dragons with my friends-- that puts me in a social tabletop role playing game. I use that to practice social engagement. I go out and I sit at a coffee shop and I’ll listen to people and see how they’re conversing. It’s people watching.
Yup. I think that is a great tool, for people to understand I guess societal like expectations, or….
True. You can take those expectations and develop your own opinions on them, and you put that into practice. It is not all limitation you can put your own spin on it.
That’s a great point. It is important to be yourself.
Always! Everyone else is taken.
That’s right! You can’t be anyone else.
So, I talked about in the beginning a little bit about how you used to be a DD Council member and we loved having you as a DD Council member. What was that experience like for you?
That was my first experience meeting a large group of people with issues different but facing similar challenges I had. Who mostly found success as they defined it and taking what they learned and paying it forward. They were actively trying to make the world better for people like them and people who aren’t like them. People who are facing challenges that we have never even heard of yet but need support. We are trying to be there for them and were paving a path for those who haven’t seen one yet.
Yah, that’s great. I like to think that we are making the world a better place for the future generations of people with lived experience with a disability. That really speaks to me, the way you talked about your service on the DD council and what were some of the highlights, if you will, of serving on the DD Council?
I definitely liked helping out at events. Being there, being one of the faces of the DD council, communicating with the public is something I wouldn’t have dreamed about doing back when I was in high school. I was so shy! Now I can face people and I can talk to them freely and educate them on things they are facing and let them know about resources. If you were wondering where to get started but don’t have to resources, reach out to the DD Council. They can definitely get you in the right direction.
Yeah, I have to say you were one of our favorite tablerers at different events because you are just an engaging person. And I know that you typically help us out at PRIDE events and those are so fun. And even when you left the DD Council, you continued to help us out at PRIDE events. What do you like about tabling at PRIDE events?
I think one of the nice things is that when you go to a PRIDE event everyone is being themselves there. Most often when you’re dealing with people who are LGBTQ+ they have hidden long enough. So, these are events where they can find people who are like themselves and just be who they are in public. I wish I had as much courage somedays.
Yah. I think it’s important when talking a lot about intersectionality, it’s important to embrace all of the parts of yourself of who you are, and each part is as important as the next, right?
It is not mental health, physical health, eye health-- it is one whole person, and you have to treat it as such at all times. Otherwise, you’re really losing sight of the end goal.
Yeah, which is to have a robust community-based life, right, and you’ve done that. You’re doing it, you’re living it on daily basis. One day at a time.
So, you also mentioned some policy. Policy is a big part of what we do at the DD Council. We follow legislation, and we look at certain bills that might impact a person’s life with a disability and then we also look at adjacent bills. So, things like housing, transportation, LGBTQ rights. All of the things that support people who have a disability to be able to be their true authentic selves, and to engage with their community and get to work and go to school and have all of the supports that they need to be able to do those things. Are there any policy initiatives or topics that are of particular interest to you?
Well, I know there is currently a vendetta against trans rights, but other than that, I haven’t been following politics as much as I like.
Yeah, trans rights is a very important topic area for us. A lot of the folks in the ID/DD community also identify as LGBTQ + and so like I said earlier, it is really important for us to support all of the parts of a person’s identity. We work really hard to make people not just comfortable, but welcomed and I think that there is a difference of what that is, and I think you understand that difference as someone who has worked really hard to become part of a work community, a school community, a community-based life, and an advocacy community, that you’ve really tried hard to build in what it means to have a full life. Like I can tell from your accomplishments that it’s not been easy. But that you’ve worked really hard to do that.
I just have a goal to be so authentically myself that it gives everyone around me default permission to do the same. That’s great. That’s the best way to make people feel comfortable, right, is to be yourself. Yah. Is there anything else that you want to talk about or that you want to use this podcast platform to message to different communities or to help people build their interest in or comfort with advocacy in general? There’s is no right answer. Even if you feel like it is a small step, it is always worth taking a moment celebrating each step that you take. It does not matter if it is three stairs and one step or if it’s one toe in front of the other, you’re still making progress-- you’re still moving forward. And be kind to yourself. You’ll get there. I have faith in you.
That’s great. Thank you. I really want to thank you for coming on the show and for getting vulnerable and talking about your experience. One of the most powerful 6 mechanisms that we have to create the change that we want to see in the world is by sharing our stories. And so, thank you for sharing your story with us today. I really appreciate it. I think our listeners can really learn a lot about from just finding what works for you from your story. And that’s like kind of what I got. You just have to figure it out as you go along. It’s not going to be perfect; it’s not going to be a one size fits all. In fact, it is a very person-centered approach to finding what works for you but even when you have challenges that you face, you can rely on supports to help you through those challenges and then you can come out the other end having some more tools and strategies to really help you engage with your community. Have you found that?
Yah. Even if you found something that does work, you’ve still found something that doesn’t work-- you know not try it again.
Exactly, that’s a great point. So, you heard Ariel here. If you are interested in learning more about advocacy, learning more about the DD Council or learning more about how we support individuals with co-occuring disabilities or multiple experiences or multiple identities, give us a call and come check us out or find us at a PRIDE event and you can have a really good time while you learn something about what we do. And with that I just want to thank everyone for joining us today, and I hope that you tune into our future podcasts.
Episode 4: Parents with Disabilities
Katelin Garland and Patricia Vincent-Piet, a mother-daughter team, discuss Katelin’s experience growing up with parents who have disabilities.
Disclaimer: some topics discussed in the episode may be upsetting to some listeners.
Episode 4: Parents with Disabilities
Episode 4: Parents with Disabilities
Transcript of video:
Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place?
Hey everybody, this is Vanessa Blais. I serve as the director of policy and planning at the NH Council on Developmental Disabilities. And I am here today with two guests, Patricia Vincent-Piet, who is our DD council member and also a fellow podcaster and her daughter, Katelin Garland. She is an investigator for the public defender’s office.
And they’re here today to talk about Katelin’s experience growing up with 2 parents who experience disabilities.
Hey, Katelin!
Hey, Mom!
Hey, Hey, Hey! So, well I guess we will get right into it. I was just going to ask generally what was it like growing up with parents with disabilities, but I thought well that’s a little too general.
That’s a lot to say in that. Yeah.
So, we will start with what was some of the, while you were growing up, were some misconceptions people had about you because you had parents with disabilities?
Yeah, a lot of, my main one was why don’t you also have a disability? That was the main misconception. Everyone thought that oh, physical, they didn’t understand the difference between physical disability and one that could be passed along through genetics or ones that were you know, you know, not that. I think that that was the general misconception. So I was often explaining no, ya know, it’s not anything that I was born with or that not worked out that way. And it was fine. I don’t mind explaining its like people see people that are different then them and they get curious, and want to know why they experience life the way they do, and I don’t mind explaining. I think it’s helpful in the grand scheme of things.
You don’t now, but I remember as a kid you did find it a little tedious.
Yeah, because I was asked all the time. And like constantly having to explain yourself as a kid is kind of annoying.
Yeah, Yeah. I know the feeling.
It’s way worse for you and dad, probably, because it is just a constant issue that you deal with, but…
Yeah, I don’t know. I don’t know if it was worse but…so what has your experience been with people who use terms that demean Dad and me.
Yeah, that was harder because that was not a general curiosity anymore. That was people being malicious on purpose. Or, that I definitely struggled with that a lot. I think I told you this story but when I was younger. I can’t remember what grade; I was definitely in middle school. I was definitely in Manchester at the time. We were living in Manchester. And this kid in my class, he used the C word to describe his injury he had recently had, he’s like…
I’ll just verify, she means crippled, for people who don’t know. We are trying not to use the word, but I want to make sure people know. What you are referring to.
Yeah, yeah, and the R word was thrown around a lot as well. But, I feel in that situation specifically he was referencing to an injury that he had gotten and he said that in front of the entire class. And this is a memory that I have so it’s kind of like a vague memory, I can’t remember everything but, I do remember standing up to him and saying you shouldn’t say that. My dad’s in a wheelchair and you are not experiencing that and I explained that it was a; I am sure that I did not explain it well because I was only like 11, or I, I was young at the time. But, the teacher, I remember what made it worse was the teacher was like oh, he’s not talking about your dad. And like trying to almost justify the child’s actions, which was really weird. So, I think that like watching an adult like that made it even worse. And like, shutting it down and making me feel like I was the one that was in the wrong in that situation was bad. So, after that it kind of got more difficult for me to confront people on situations. I think that’s, that’s, kind of like the starting point because before then I was very vocal about when people would use derogatory language against people with disabilities. I would often speak out and and be like you shouldn’t say that that’s not or often even if it wasn’t meant to be at someone with a disability, if they were just saying it because people often use the R word all the time, I feel like still even though its obviously not a word that should be used. But as I got older it became harder to confront people about it. I think it had a lot to do with that particular situation being shut down by someone who I feel like in that situation should have used it as a teaching moment, you know what I mean.
Someone in authority that you thought had your back and didn’t.
Right.
So, like as an adult now, like, we’ve moved into a place where we talk about ableism. We talk about those things. We have a little bit better language around that. Do you think that is what makes it easier for people to be able to be more outspoken about it? Because people can actually name what they are doing?
I think so. I think also when the R word kind of like left, it was no longer used as a medical term, and people really started advocating for the fact that it should not be used in a derogatory way or just in general it shouldn’t be used because it is seen as a derogatory word. Yeah, I think that impacted it a lot. I think that having the language to tell people why and explain hey this is why you shouldn’t say this. And but doing it in like a respectful way and saying hey I know that your intentions weren’t to, you know. It’s like the same when people are swearing or using any other sort of word that can be seen as derogatory if it upsets someone just, just don’t use it, obviously. But, yeah, I think that explaining and having the language to use is definitely helpful. As you get older, because as a kid, I definitely didn’t have those tools, for sure.
Well, I don’t think anybody did.
And when you were young, I don’t think if you used the word ableism, I don’t think anyone would know what you are talking about.
Right.
Ableism was not understood, really.
Yeah. I don’t even think disability was commonly used. I think handicapped was still.
When you were a kid?
Maybe?
People still use that word.
Yeah, but I think it was not as commonly used as it is now. From my memory, but.
Yeah, things change. So when you were growing up is there anything you felt like you missed out on because you had parents. Because I can think of lots of things that I thought that you missed out on.
Really? I guess I just don’t look at it that way. I don’t think about it in retrospect a lot. I just, I did have time to reflect on it recently when I had there was a trend going around on Tik Tok a while ago. I made a whole Facebook post about it because I was very upset. And I talked about my entire history basically like growing up with both you and dad. And in that post I said I didn’t see, I just saw that I had parents. I didn’t really ever think of you as different. I knew obviously that you had disabilities and that was apparent, it just didn’t feel like I was lacking something because of that. If that makes sense. And I was able to do a lot of things that everykid, like, I went to school. I went to public school. I went to Concord High School. And I also did theater, which is like, I didn’t do, I did sports like vaguely. But, I just didn’t personally like them.
She tried one year, and you were like, no, not for me.
Not for me, yeah, I tried track and then soccer and soccer was all right. I thought you know, you were both were very supportive. I was able to make decisions about what I wanted to do when it came to extracurricular. When it came to, I had normal friendships like Jenna. And my friends never really like, I know Jenna asked I think when we first started as friends what was the situation? But after that it was never brought up again and she treated you guys the same exact way she treats her own parents; I feel. She’s basically like my sister so, and I think that she is also more aware of the way people with disabilities are treated because if that, so yeah. I don’t know. Yeah, I don’t think I’ve lacked anything for sure. Well, that’s nice to hear because as a parent with a disability when you watch what other people can do for their kids. Like when it was time for you to learn how to ride a bike, I can’t ride a bike. I can’t show you how to ride a bike. So like going on vacation. We couldn’t really do that because it really was…so it’s nice to hear that you remember it better than I do. And maybe it’s because I was an adult so I was aware, maybe?
Yeah, and I feel like we had a lot of support, like familial support from other people in the family. So, I don’t think that. Like, I went on vacations with Grammy and Grampy. I mean I went to Disney that one time with my cousins. And I think I went on other smaller vacations here and there with like friends and stuff. And you know, but personally even now as an adult I don’t find vacations to be like, I like traveling. I like the thought of it, but it’s so exhausting when you’re doing it. Like when we went to Universal last February. That was really fun. But I was so tired, and it was not even because of you and dad at all. Because you and Dad were doing your own thing, basically. It’s just that Brandon and I were walking around a ton, and I was exhausted. So, when you’re on vacations, it’s almost like yes, it’s a fun experience, but sometimes it doesn’t really feel like a vacation.
You know what I mean. I am much more of a homebody.
You need a vacation after your vacation?
Exactly. That’s why I always take a few extra days after.
And sometimes it’s like the memory is more meaningful than the actual time. Speak for yourselves. I happen to love vacation. I know, you and your traveling. Not to say that I don’t enjoy time off from work. Because I definitely do. Traveling can become, when you have to plan everything, you know. You have to decide where to go.
She’s an ace. I mean this woman. That’s part of the reason I have the traveling bug is because of her stories. So many cool stories. I want to ask you when you talk about your friendships, did you ever see or experience any of your friend’s parents reacting to the fact that both of your parents have disabilities?
That’s a good question. I don’t think so. I am trying to remember what parents met my parents. Out of my friends. I know Jenna’s has and Ann and Greg are great. I don’t think they ever really, Ann is also a nurse, so, her background may have like she doesn’t really find that, a family nurse too. I think that she worked for a family doctor. Not like, I know hospitals and stuff that can be a little grey when it comes to, because I know you haven’t had the best experiences with hospitals, necessarily when it comes to Dad’s care.
Yeah, they have no idea.
Yeah, but, I, yeah, I am trying to think of any other. Yeah, when they would come, when you and dad would come to see shows. Like when I was doing theater. I feel like maybe we got the odd look now and then, but I don’t think it was, no one would have the guts I feel to come up and directly address us and be like, you know, asking me questions about my family. When I, it’s mainly the kids, I feel like, because they’re generally curious and its never with like, malicious intent was always how I saw it as a kid. Well now in retrospect I am sure that when I was a kid, I was irritated by it. But, yeah, I, yeah, the parents were always respectful.
When you were a kid at the theater, I remember like some of the parents, some of the parents were just a clicky as their children were, so I would end up sitting all by myself. But I don’t think that had anything to do with me having a disability. It they were just.
That was kind of the theater culture.
The theater culture is very high school-ish, at least it was at that time. And also, the theater that I was involved with was like you are going to go professional, you what I mean. That kind of like. Not competitive. It was pretty competitive. But now, it’s a lot more like, now that I do community-based theater, I enjoy it a lot more. I think it’s definitely more about the community and like building a community together versus…
Yeah, like you’re not all in competition for…
Exactly.
We all lift each other up. It’s been a lot more of a positive experience. Now that I am not doing theatre, as like, or pursuing theatre as a career.
Can you think of any way that having parents with disabilities, do you think, sorry the question, can you think of any way that it has benefitted you.
Benefitted me? That’s a good question.
Yeah, I was thinking that it made you, it made you a lot more open minded. Like, you wouldn’t jump to conclusions about people.
Yeah. I was definitely more aware of the fact that there are communities of people that look and sound different from me. I think that I wasn’t quick to judge people with disabilities, too. I never assumed someone’s disability, or I never assumed that they, um, oh, they must have a physical disability or a cognitive disability, you know what I mean. I never automatically assumed that about people with disabilities. I guess that also plays into just your everyday kind of life. Like when it comes to just anyone who doesn’t look like you. Not making any assumptions. Being genuinely curious about people’s backgrounds and where they come from. Because I know that coming from a specific background, I kind of, I think I talked to you about his too. I kind of relate myself to CODA kids a little bit. Not that I would say that we are anything alike really. But you know they grew up with two parents who are deaf and have that sort of background and that sort of understanding of their own community. I feel like I have that kind of with a with your community and growing up in that for sure.
Because you had a lot of exposure to the disability community in general.
From a very young age, yeah.
You would hang out a GSIL with me and all sorts of things. And I’m thinking that in your current line of work, you aren’t inclined to judge people.
Oh, for sure, especial in my current job for sure. I think, now that you say that I am very big on, yeah we have had DEI trainings at work and things of that nature and it was always important for me to go to them and make sure that I kept up to date with certain terms and what was being used in any sort of community. And you know, being an investigator for the public defenders, seeing the disproportioned effect, seeing the way the justice system disproportionately effects people who do not have a lot of money, who are indigent. That’s part of our job essentially. You definitely have to have a more open mind for that kind of work, and I am of the mind that everyone deserves representation. So that is why I do what I do. Sometimes people are sometimes judgmental of that, but everyone has their own opinions on that. That is definitely a whole other topic of.
How has the lack of paid caregivers in the state affected our family, do you think?
Oh, God, greatly. Well, this has been an issue since I was a kid, I feel like. I mean Tracey, we had Tracey for a long time luckily, who was a caregiver with my dad for a while. And that was great because she knew Dad really well and she knew like what he needs, and it was almost like getting into that routine was easy because she already knew what to do. Every time you have to hire a new person, they have to learn the routine, they have to get into it, they have to you know, be comfortable with everything and it’s a lot to teach someone over and over and over again. Especially with such high turnover that you are experiencing, and I see. It also affected us recently because you are Dad’s primary caregiver essentially at the moment especially when it comes to aides’ and what not. And when you broke your wrist, you couldn’t help him get up anymore, so I had to like to come for a few weeks and help you out with that, which was totally fine. And I knew that the day would come, you know, what I mean. Because I know that the state unfortunately does not pay people enough to keep people in those jobs. And even if you are with a different program that’s not through the state, and they pay people a little more, but they don’t have great benefits.
It is through the state. It is the same funding stream it is just a different middleman. So, they don’t provide the same supports, but they can pay people more but.
They don’t have health insurance. Is that a thing?
No. None of them do. With these guys I have to find the people myself. Do all the advertising myself.
Right and just even not having any health insurance for any of them is so like, you are never going to keep someone long term in those positions.
We could have a podcast just on that topic.
No, I…
For sure. I want to ask you because you said I knew that day would come, or I knew that time would come. So, can you like expand on that a little bit? In the past there was an awareness that there was a time when you were going to have to be part of the caretaking.
Yeah, I didn’t think about it as much when I was a kid. It definitely was a more recent…I remember when Dad had his first heart attack. I think that was when I like kind of, I knew that you know Tracey was not going to be around forever. And then I knew that so with the difficulties that they face in hiring caregiver or aides, I just knew that I was probably going to have to step up and help. And it never really bothered me because I just knew that it was something that they might need, and I didn’t want them to feel like it was a burden ever because I don’t know. There is a lot of stigmatism. That’s not the right word. A lot of stigma around. Sorry, I misspeak so often, so I am going to use the wrong word.
Join my club.
There’s a lot of stigma around caring for the elderly I feel and add people with disabilities on top of that I think it just becomes a whole wild concept to America for some reason because we really don’t care for our elderly as well as like other countries do for example. But I want to be there for my parents because I knew from a young age that that would probably have to be the case and it never, it never negatively impacted me. I think it will only like bring us closer as we get older. If that makes sense.
And so, like I believe you have a partner.
Yes.
And so, I am curious. Have you had conversations with your partner about you know, as my parents age that they’re probably going to need more care. Is that ever a conversation that goes on between you?
It is. Well, yeah, you know, when you want to potentially marry someone you always have to discuss those sorts of things.
But he’s very supportive of me taking care of my parents. That’s what I if I want to do or need to do. Nursing homes are not. They’re just not what I would like for my parents, you know what I mean? Like I know that that may have to potentially have to be a part of the conversation in the way, way future. I think that I would prefer to help as much as I can, personally. And when it comes to Brandon, you know his parents have a very different outlook on that sort of idea of ending up in a nursing home and all that. And I won’t share their opinions here, but we definitely do have some sort of differentiations, but he also has two brothers. And I’m an only child. So, we definitely grew up in very different families and very different backgrounds. So, it’s interesting to see how those affect our conversations about how we approach things as our parents get older and what we are going to do. But, yeah, I, he’s very respectful and knows that I am going to do what I want either way.
Well, that’s a good step.
I am pretty stubborn. But we compromise on a lot of things but that was one thing I won’t compromise on for sure.
That’s good.
It really is. So, you have answered my next questions. Some have suggested. Some have suggested.
Some have.
That an answer to the caregiver crisis is to create more congregate housing. Where people, and you know what I mean by congregate housing?
That’s basically putting people in assisted living essentially, right?
Not necessarily. It could be like remember where Dad lived when we met him?
Yes, yes.
That would be considered congregate housing. Or it can be like a group home.
Right.
Anytime that you have just people with disabilities living in a certain space. Some have suggested creating, and I think this person had in mind like group homes more that that would be a good solution for the caregiver crisis. Do you have any thoughts on that?
That’s such a weird take. Let’s put everyone together so its more convenient for me, is how it reads. Versus like, it just doesn’t make any sense to me. It’s just taking away people’s independence to live on their own and like set their own paths. Like, you’re basically forcing people into a living situation that they may not want for the convenience of care and that just, I don’t know. That just sounds like a really bad take.
And say Dad would be like living in a group home. I mean what are the odds that we would have met him. And like how do you get married and have a family if you are living, even where he lived before.
The one-bedroom apartment basically.
We couldn’t have moved in with him.
No, we couldn’t have, yeah.
And so, we were just fortunate enough that we both had the income that we could find another, and it was a brand new apartment building. And we had to move into a really expensive apartment.
I remember it was a nice apartment, but.
It was brand new. But to, only buildings build since 19…I don’t even think it was even 90 because 90 was when the ADA passed. So, it was like 91. Had to have accessible units.
Right.
And there are just not a lot of buildings like that, so. So, it’s almost like you have to have money in order to live an independent lifestyle, which is crazy. Our capitalist society for you unfortunately. Oh, boy another conversation we can have. Yeah, another conversation we can have. There’re so many things that we can branch off here. But it is interesting to think about that about that you send if Jim were living in a group home, you guys wouldn’t be a family.
No, right.
And so that is such a real-world view that people really need to understand. That people who have disabilities and experience disabilities have a right to have a family and be a family.
Exactly, yeah.
And that’s kind of something that I think needs to be pushed into the narrative when people are talking about the benefits of group homes or the benefits of segregated housing. Especially for parents who have younger children who are becoming adults and they are afraid for them; you know that’s one of the things behind them leaning towards congregate settings because they’ll be safe there. They’ll be taken care of. But, I think it’s really important to push that narrative of well don’t you want your son or daughter to, you know, be able to experience having a family, and falling in love and doing all of the wonderful things that we able-bodied people don’t even think about.
Yeah, because once you are in those situations, you really don’t tend to get out. People, there aren’t many people living in group homes and then move to a less segregated setting. It’s pretty rare.
Yeah, it’s very difficult to reverse that situation. I mean I remember too when I don’t know if you ever read the article that I wrote on your mom and Jim. About how the met.
Yes, I did.
And they were getting married. It was a few years ago.
I think I remember it was at my office! Yes, it goes to the public defenders. This was before I became an investigator, and I was handing out the mail. And it came in the mail. And I put it in all of the attorney’s boxes and I was like, it’s my mom and dad!
That’s so awesome! That’s so great! But I remember someone had read it and they have two very young children who both experience disability. And they said to me how meaningful it was to read about people with disability who went on and you know, she said sometimes I wonder what, what’s their life going to be like? And she said being able to hear about people who fell in love and got married and had a family, she said it just gave me a lot of hope and made me see their future in a different way. So, I think it’s important to kind of keep that conversation going with people who rightfully fear for, you know, their children and what their future holds.
Yeah, I definitely agree. I feel like that’s why becoming more involved in the community definitely helps because you can get all sorts of different perspectives and how it can work out for anyone.
Yeah, and your perspective is really valuable.
Yours’s too.
Oh, thank you.
Do you have any advice for people with disabilities who might be thinking about having children? Oh, my God, do it. If you want to have a child, you should. I don’t think anyone should be limited to…I know even right now the financial state of the world is pretty bad, so I understand that there’s a lot to consider when you are having a kid. But I feel like everyone should have the right to have children, no matter what they experience. In any way, shape, or form.
So, what you are saying is we didn’t mess you up too badly.
No, no, you didn’t. You really didn’t. I think I turned out pretty good, mom.
That was loud.
Oops.
Yeah, mean I’m biased, so.
I think every parent worries about how much they’ll mess up their children.
Oh, yeah, that’s not exclusionatory. Exclusionatory is not a word, but then again, I am misspeaking, is not exclusive to any sort of community. I feel like everyone worries about that for sure. Me, contemplating having kids, you know is a part of that too.
Right, especially since you are at that age. Not having kids, but where a lot of people around you are having…
Yeah, and are dead set on having children, too. I am like, how can you, how could you, I don’t know. I have always been back and forth, like, I do really love kids. I think it would be great and then I am like so much money and time. It’s definitely worth it. I can see that it’s worth it. It is just going to take longer for me. I am so decisive as a person in general.
Once it happens, it happens.
I know, there’s no going back from there, for sure.
You get real decisive, real quick.
Yeah, right.
Just to wrap things up, is there anything that you’d like to add? I like to give people a little bit of time at the end, just to say anything that they feel like they wanted to have a chance to say.
Yeah, I mean thank you for having me. It’s been really fun. I don’t get to talk about this a lot. I feel like it’s kind of part of who I am. And it’s so hard to put into words to describe my experiences and when it’s just the way I have lived my whole life. So, I apologize if anything was not really eloquent because it’s me kind of… I mean my mom did send me the questions beforehand, but I didn’t want to prepare anything to written because I wanted it to come from the heart, if you will. But I appreciate you highlighting people who have different experiences. And it’s definitely valuable to people who are like me or who have family members with disabilities and understand that it’s just, you know, it’s just another way of living. Another way of growing up and experiencing life. So, thank you so much for having me.
Yeah, it was so great having you.
Thank you for coming. It was great Katelin.
It’s definitely a perspective that a lot of people don’t get to hear about. There’s a lot of conversation around what it’s like to be a parent with a child with a disability. But we don’t really get to hear a lot about being a child of parents with a disability. We really appreciate you coming.
Yeah, I don’t know if I’ve ever, I know people have written about it because I have been asked a few times in the past, but I don’t think I’ve ever seen someone well, I am sure it’s happened. I am definitely not the first. But thank you so much, I appreciate it.
Do you have anything you want to say?
I just want you to let you know how much I appreciate you coming in, Katelin. And thank you for helping out, Vanessa. It’s been great. I even learned some knew things that I haven’t thought about before, so it’s been cool.
Thank you for joining us today. I'm Vanessa Blais. This was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.
Episode 3: Interview with Nicole Sheaff
In this episode we hear from Nicole Sheaff, a parent advocate who had to learn to navigate the education and services systems to provide support for her four children, who have mental health and developmental disabilities.
Learn More:
Disability Rights Center NH
Parent Information Center
Episode 3: Interview with Nicole Sheaff
Episode 3: Interview with Nicole Sheaff
Transcript of video:
Hey, everybody! My name is Vanessa Blais, and I am the director of policy and planning here at the NH Council on developmental disabilities.
And I’m here today with Nicole Sheaff. She is a parent of children who have disabilities, and she is also a graduate to the 2022 NH Leadership Series. And she is here today to talk a little bit about her experiences being a parent and also inviting others to share their experiences and to be support for each other when they are navigating the systems, especially in the school systems.
So, Go ahead Nicole.
So, Thank you, Vanessa for inviting me to do this. So, I am a mother of 4 children that are all diagnosed with developmental, learning and mental health needs. I have a professional background in health care and also in special ed settings, so when I became involved in the special ed process I felt like I had a step up in that in that I had a medical background, and I knew how to write goals and it was still all new to me. And I had to do a lot of research, so I have felt for 17 years, cuz my oldest is 21. I have 18-year-old, a 14-year-old, and a 9-year-old. That having children diagnosed with various disabilities has really isolated our family.
We really felt isolated in the community, within the schools, just because my kids were never successful with sports or extra-curricular activities. Many of them had one on ones. So that made it very difficult for them to be successful in a lot of areas both school and within the community.
That isolation, I would say was our biggest challenge over these past 17 years. Both of my sons were identified for IEPs at early ages like right when they were 3 so coming out of early intervention and being identified for an IEP and during that time event though they qualified for a developmental preschools a developmental pre school was not a full-time placement. It was a couple days a week for a few hours, so we did require because both my husband and I worked full time private preschools and both unfortunately both my boys at different times were asked to leave their private preschool.
So, in turn my husband had to quit his job and stay home with my kids, my boys because there wasn’t anything to fill the gap. They needed the services from the school, yet there wasn’t anything the private schools didn’t feel like they had the support or the ability to provide what my boys needed at that time.
So, my husband stayed home, and we did do some neuro-psych testing on both of our boys. We brought them down to Boston. When my second son was about kindergarten, first grade and my oldest one was about first grade, second grade. And they did receive diagnosis but one thing that really impacted kind of us over the years was that my second son, although he had a lot of symptoms and met a lot of criteria of a developmental disorder such as like autism, the doctors felt that he was almost too social. So, he didn’t get that diagnosis. And you know sometimes your happy that you don’t get a diagnosis and sometimes you’re not happy and I think parents struggle with the importance of a diagnosis. What does it really mean? So instead of a formal diagnosis he just received a multitude of language disorder, sensory processing disorder, ADHD, cognitive delays, learning disabilities, all independently.
And what kind of came of that was over the years we found that because he never had a formal diagnosis of a developmental disorder, he didn’t qualify for any services. So that really impacted my second son’s progress I think through school and now he’s 18 so he is an adult.
So, we found out quickly that private insurance would not cover a language disorder for speech therapy. Because it was a disorder, it was not considered an acute condition. So, it was not covered. So, we really had to rely on school-based services for most of his his supports. 5:15
And a lot of insurances wouldn’t cover services so we had to privately pay out of pocket for short terms because due to financial need, you can’t pay you know $260 a session for very long. So that was another thing that got in our way. So, eventually, over the years of working with the school and my childrens’ disabilities, I ended taking them off of my private insurance and actually putting them on state insurance because I found that I was able to access more services that way. However, at the same time, not a lot of private takes more of a statebased insurance.
So, my son my second son does qualify for medical based Medicaid, so I was able to get him access for that. But it was interesting to see kind of that struggle between private insurance and then and Medicaid. And being a professional and a working parent, kind of, struggling internally with taking state assistance that way too. It was difficult.
So, he really, the boys didn’t receive any outside services. When my second son started kindergarten, he did qualify for full day kindergarten through the school to receive all of his services, but the staff really felt like he wasn’t ready. And that is kind of where my advocacy really kicked in high gear. I had to prove why he needed the services. I needed to prove why he needed a full day. I had to prove everything.
So that is when I discovered the Parent Information Center. And received my handbook on all the special ed rules and regulations. And started reading and tagging. And I sat at every single meeting and started quoting off laws and rules and hired an advocate for a short term. And really kind of became my boys’ case manager and advocate. Very strongly because no one else was going to do it. No one else had that intensity. And because I think I am a provider too, I felt like I needed to look in every area to get my children the support and the resources that they needed, and they deserved. 8:07
So, I had mentioned that I have four kids. I do have two daughters. And they didn’t receive their IEPs until about first grade. And through all of their experiences I have been the one, along with my husband, reading the IEP goals, reading over the evaluations, lining things, underlining things, marking things, putting comments, questions, doing research on various techniques that are out there. Just so I can make sure my my kids are getting the best services they need. And like I said, because we have to solely depend on school services based on insurance, we didn’t have that ability to do that a lot of outpatient work. And also, on a one income salary because my husband had left his job to stay home with my children.
So, just really experiencing finding things and finding resources on my own. We did, like I mentioned access Parent Information Center. I have needed to contact the Department of Education to find out kind of the rules for what due process is, what mediation is, how I need to find information about seclusion and restraint. To contact the Disability Rights Center. We had access to a lot of community health agencies and area agencies. And these are things that I just found. I had to research on my own. I had to find on my own. We’ve had many case managers over the years, but I feel like because everybody’s understaffed and underfunded, I really feel like parents, for me at least, need to do a lot on their own. 10:03
And It's very overwhelming, so I think we found as a family that we were in desperate need for respite, desperate need for home supports. We could never find babysitters that had the skill, that would take the amount of money that we could afford to pay. So, we did have access to respite money but never actually used it because of the pay and the skill level we needed. We were just never able to find somebody.
And my children were sometimes in constant states of crisis at school. So, I would be at work, and I would be getting phone calls and you know my husband started his own business at home, but because I was the medical provider and that expert and that case manager, like I was the one that was contacted. I needed to go. I needed to pick them up. I needed to have a meeting. I needed to be there for everything.
It impacted my reliability with work, how often I could get to work and do what, I kind of put myself in my career.
So, again that lack of diagnosis really impeded my children’s ability to access services. They had the level of need there but because the diagnosis wasn’t there, they didn’t, they would qualify for conditional involvement with the area agencies. And even my daughter as she became older, I had applied several times to our area agency for her and she was declined because it was perceived that it was her needs were more mental health related and I eventually spoke to supervisors, and they sent her for a clinical review, and she did qualify. So, again, it’s required me to be the push and be that squeaky wheel to get my children what they needed. And that was pretty exhausting for me.
My daughter eventually required residential, and the school was adamant they were not going to provide that. I had to really do my research, contact various state departments legislators, and was able to get a placement for her. But I think the school immediately was like well this was at that time was CHINS, so a child in need of services and I think that they thought that would be helpful, however and the time, CHINS was related to them losing parent rights, so we didn’t want to go that way.
So, I really had to work hard talking to all these departments to get her placed because we weren’t able to keep her safe at home. She needed something. And she was there for a year and she’s home and she is amazing now. So, like I am so glad that that is where we were able to get her.
And so, it’s just been a lot like I said it wasn’t till about five years ago that I found kind of my tribe. So, after doing this for about 17 years on my own really finding support groups on Facebook, within the community, and really understanding that there isn’t something wrong with our parenting. This is our children have disabilities. We are learning how to manage them. They are great children. And just to have that support from others and to have that outlet to be like I really had a tough day and have people understand. That was huge, and I wish I had that from the start because that made me feel more, our experiences more normalized, I guess.
So, you know we are still plugging away, but I do a lot of research on finding trainings. Myself, when my second son was going through transition, I researched every transition zoom and in service that might be out there just so I could be on top of what I needed to lay out with the school, with services, what I needed to pursue for voc rehab, all of those things. So, it’s been a long and very busy road. I eventually decided to stop working because the caregiver burnout was just so intense that it was affecting my physical and mental health and because I project manage four children that’s kind of was my second job but now is my full-time job. So, there is always an ebb and flow and a loss and a gain with everything. 15:23
I’d say that now, now I have a good idea of what resources are out there and what I need to and they’re in good spots. I am kind of taking this advocacy to help other families know what is available and you’re not alone and that you’ll get through this as hard as it is but just really relying on the support of others and learning from others, so.
Can you share a little bit about what you think the school system can be doing that would be more supporting of parents?
I think, you know I, the school like I had mentioned before, I think everybody is short staffed and I think they are underfunded. And the teachers have a lot on their plate. I really feel that understanding and empathizing with families and knowing that families are doing the best they can and if they are struggling, they need more support and more help. So instead of making families a, not necessarily an enemy, but I think when you have parents like me who are very intense and when they come to the table with a list of demands, and saying I need this, I need this, I want this, I want this, I want this, I think it’s automatically, it’s kind of antagonizing, I think. And having schools and places understand that this is a defensive reaction, and families are really trying their best for their kids. It’s not necessarily a parenting issue. It is that they need more. They need more help. They need respite. And really connecting with other families I think is rhelpful, I think outside of school to make you feel more normal. If that is a thing.
I think also having information. Cuz I , I again, I have a background in some of that special ed and healthcare and so I knew the rules and so I a lot of families coming into this don’t know the rules, that those goals need to be measurable. That those goals need to have specifics in there and what the services are going to look like and when the services are going to be provided. And I feel like educating some families more about the process would be really good for the school to do and make them, it more of a team feeling because families are the expert in their children. So, the school is the expert in school but at the same time the parent is the expert of their child. So, really making parents feel important and valued and heard I think will change the dynamic a lot with the school system. And helping find outside resources. It might not be funded by the school but looking at community-based supports and really building in a sense of community.
My children really were either isolated by their either by their ability or their behavior or were placed out of district for several years and what we discovered in that from those experiences is that they didn’t really have friends. They were kind of seen as oh don’t play with this child or they were taken out of class or the class was moved or they were sent out of district an hour away so they weren’t in their home community.
They didn’t have the peers; they didn’t have the resources and the connections and that really impacted them. Their mental health. That feeling of inadequacy and their self esteem and really kind of developed mental health needs because of their lack of friendships.
So, I think that making the school and the community be accountable for making those safe and integrated placements is crucial. I could never find a baseball league that my son could play with play in. Or a camp even because all the camps required a one on one and we couldn’t pay for a one on one or find a one on one. So, then they miss out on the camp experience. So, it is just all of those things that make kids kids that they really it was hard to find they really relied on each other for friendships.
So that but also I think not necessarily in the school but really looking at children based on their need and not necessarily their diagnosis. I had mentioned this before, but my son did not qualify for a lot of services because he did not have a neuro developmental diagnosis. The interesting thing is that when he was 18, he received a neuro developmental diagnosis because I pushed it and pushed it and pushed it. So,he lost a lot of time yet had the need. Same with my daughter. There was a need. Our family had a need. There was a level of intensity that was there. Yet because one word wasn’t there, there were no services and supports that could be provided. So, I think that is something else to look at. For us, respite supports, having lists of providers, financial assistance. And even when I quit my job, I am still working but I’m not being paid to be there case manager.
So, I think, I think that families that have the financial resources may be able to access more. But working middle class families are staying afloat and there’s not that extra money there to pay those thousands of dollars of a specific treatment. So just having those resources, having those financial resources, community resources. Lists of providers. We have had to do research ourselves to find specific providers that might be skilled in a certain area, and we’ve had hospitals tell us okay you need to find a provider that’s skilled in x, y, and z. Go ahead. Gofind somebody. And that is really difficult, so.
Parents and families that may not be as outgoing or understand the system as well like I struggle. Like, I am struggling, and I feel like I know it. So, families that are just starting or don’t know what is they should expect. You know, that’s kind of where I really where I am trying to help right now, too but. I would say for us, we did eventually get home supports through the Fast Forward program and that changed our lives. Because we had always been to different providers for all our kids working as individuals and we have been given you know, hundreds of suggestions and use this task board and this behavior chart fand do this and that and we tried it all and we could never quite get it to work for our family because we have four kids who are all different personalities and all different intellectual abilities, all different interests. So how can you manage four children and survive?
We need something that works. So, having Fast Forward come in and they you know outsourced a provider to come into our house and work with our kids and provided a respite so my husband and I could actually go and have a date. So that was something that was really helpful. Had I wished that had happened ten years ago? Yes. So eventually we got to what we needed yet, we lived in kind of a state of crises, and I would say fear because we were constantly did we do enough, have we found the right thing, do we need more? What is there? So, constantly just feeling like we needed to do more. And once we felt like we were supported, and we had the services we needed then we could take a breath. 24:50
And then, like I said the being a squeaky wheel. I don’t mind being a squeaky wheel. I think sometimes I do come off as fairly aggressive when I am in my school meeting because I have my list of things and over time I have been really explaining to the school where we are as a family and the struggles that we are having and being completely honest and being very vulnerable and saying hey, I need your help. I am not an enemy. I don’t want you to be the enemy. We need to work on these kids together and you need to help me, and I need to help you has made our connections with the school have been better. And not so stressful and understanding that and really balancing my self-care. Like I am in a career where I am supposed to be telling everybody to balance their lives? And I was terrible at it. And so, I think really having that breath and taking that moment I needed and I needed people to help me do that. Because I was so overwhelmed. My family was so overwhelmed. We were just living in a state of kind of fight fight or flight at all times basically. So having people help you to make a phone call, help you to fill out an application, um, do that research, that gives you time to then breathe. And I feel like every family and caregiver that is whether you have one child who experiences disability or ten that experience disabilities, you need help. You can’t do it by yourself. 26:53
So just really having those supports I think is crucial and to me if I had as soon as I found out my children had, were, as soon as I kind of went through this process of even from a young age and going through that loss of ok what’s my life going to be and not knowing and having a support system then, and having a community then, and having a support group or knowing that you are not alone, then, I think would have made my experience a lot different. So, starting there and then and building those, and then working on the services I think would have been really helpful for me and feeling like I was a valued member of the school team. And not having to fight so hard, I think, would have mind things and then insurance and it the difficulties with the insurance companies and what they will pay and what they won’t pay and what provider they will cover and what they won’t and having to and even providers not taking insurance. I think a lot of our struggles so kind of understanding that and would have been helpful. I could speak on this for hours. But, I just think that parents need a voice. They need to be understood and they need help and support. So.
I want to thank you so much for taking the time to share your story with us and I’d like to wrap up with just asking you if a parent who is just starting this journey came to you what would you say is the first thing that they should do?
The first thing that they should do is find time in their day to rest and to find a support network like I had just mentioned. And also, to connect themselves with a tribe of people that have those resources. That can get them started with alright you don’t have to start researching alone. Here are some places you can start. And that’s a good starting place. But I feel the need for having a community and having a support and having that respite built into your day, is where people need to start. And then once you have those things start tackling the advocacy part. Because it is very easy to go one hundred percent into advocacy because you love your children so much and you want everything for them that you forget about yourself. So, yes. Connect. Connect and support.
That’s great. Connect and support. Thank you so much.
You are very welcome. Take care.
Episode 2: Disability Life in NH with Patricia Vincent-Piet
In this episode, New Hampshire Advocate, You Tuber and DD Council member, Patricia Vincent-Piet talks about the challenges of life in the Granite State for people with disabilities. She touches on housing, transportation, visit-ability, and ableism.
Learn More:
Jim and Pat Piet You Tube Channel
NHCDD website
Episode 2: Disability Life in NH with Patricia Vincent-Piet
Episode 2: Disability Life in NH with Patricia Vincent-Piet
Transcript of video:
Hi and welcome to the second episode of “That’s Inclusive!’ My name is Pat Vincent-Piet. I will be your host today. I live here in New Hampshire with my husband, Jim Piet. We both have cerebral palsy. We’re both members of the New Hampshire Council on Developmental Disabilities.
I’d like to thank the Council for giving me the opportunity to host a couple of podcasts. Jim and I also have a YouTube channel where you can check us out. It’s “Jim and Pat”. Just J-I-M A-N-D Pat P-A-T on YouTube. We share a lot of our experiences living and working here in New Hampshire. Please check that out when you have a chance.
What is it like to live as a person with a disability here in the great state of New Hampshire? Well, there are several things that make it really wonderful place to live. First of all, it’s a very friendly state. Jim and I have lived in the same community here in Concord for well over 15 years now. We know most of our neighbors. Jim uses a wheelchair and it’s a power chair. It tends to get stuck sometimes, but he feels perfectly comfortable tootling around our large neighborhood by himself because we know so many people. Whenever he’d run into a problem, people are great at helping him out.
We also live in a very small state. While there aren’t many people here in our state – especially in certain areas- you get to know your neighbors because there just aren’t that many people to know.
It’s also a state where people tend to stay for a long time. As an adult I’ve mostly lived here in New Hampshire and Florida. Florida, while being a very physically accessible state - so you don’t run into the same problems with inaccessible restaurants or stores that you do here. I mean everything is pretty much physically accessible. It’s also a very transient state so people don’t stay in the same place for more than a couple of years, if that. The transientness of the state like Florida made it really hard to get to know your neighbors and find anybody to rely on. Even though it’s physically more accessible it’s not as friendly, in my opinion, to people with disabilities because you don’t connect with your neighbors for long.
Another great thing about living in New Hampshire for people with disabilities is the number of disability related organizations. We have New Hampshire Council on Developmental Disabilities and the other organizations where people with disabilities can find support. Some, like Area Agencies provide direct services to people with disabilities and it’s very easy to get in touch with them. When I first moved here from Florida, I didn’t know anybody and I called- I called a few places. I think I started with the Disability Right Center, and I ended up just calling from place to place. I met a ton of people within a week just because they were - all the organizations were ready to help me. They were so interested in talking to me and it was really easy to make those connections. I haven’t found that’s the case in other states. Whether that’s because the organizations don’t work as well together or they’re just so much larger. Having so many friendly disability- related organizations makes it so much easier for people with disabilities to live in New Hampshire.
But as many of you know who either have a disability or have a friend or a family member with a disability, there are a lot of things that make it hard for people with disabilities to live in New Hampshire.
One thing is the lack of accessible housing. If you need- particularly wheelchair accessible housing, there’s not much. If you are fortunate enough to find something, you’re staying put because there’s just not an option to go anywhere- particularly for people with moderate incomes. A lot of our accessible housing is rental housing and a lot of it is in rent controlled housing- housing that’s been built by the local public housing authority. Or has used Section 8 money to be built. It can only house people that fit certain income criteria. If you don’t fit that income criteria, you then have to look for market rate housing. There’s far less market rate housing that’s accessible available to people with disabilities. Your choices are very limited. And if you want to visit friends or family- odds are that their- where they live is not accessible. Lack of accessible housing is an issue for people with disabilities in New Hampshire.
We also have a lack of public transportation. If you don’t drive, you’re pretty much stuck. We have some of our larger – some of our larger cities do have buses, but the schedules can be very limited. There’s special transportation for people with disabilities but arranging those rides can be really hard to do. Our state is intended for people who can drive and get themselves from place to place, and if you can’t, well, you’re stuck.
We also have a lot of inaccessible public accommodations. Jim and I were walking around in Concord right before Christmas, and Concord is one of the more accessible towns in New Hampshire. But there are still a lot of businesses in downtown that are not accessible. They have steps at every entrance. A friend of ours was performing in a show and didn’t realize when they booked the space that it was upstairs somewhere. And there was no elevator. There are a lot of places in New Hampshire- a lot of stores, theaters, restaurants that are just simply not accessible for someone who’s using a wheelchair.
One of the problems for people with disabilities who live in New Hampshire is the workforce shortage. If you need care to get up in the morning, to eat and do the daily things you need to do just to get out of the house and live your life – you need someone who can come in and help you do those things. Well, we don’t have enough people. Last I knew, Granite State Independent Living (they employ personal care attendants for people with physical disabilities), they needed at least – at least- 400 people to be fully staffed. That means there’s at least that many people out there going without the care they need just to live their lives.
And the last thing that can make things difficult for people with disabilities to live here in New Hampshire is ableism. Ableism specifically in our media. I do plan to have someone come on to talk about what ableism is and how to identify it, so I won’t get into that today. Our one media (television) outlet, WMUR, is very ableist. The only shows that they have that feature people with disabilities, at least locally, are extremely ableist.
I plan to do several future podcasts. I’m going to do some interviews with other New Hampshire residents who have disabilities so they can talk about their experience. And I plan to bring on some professionals housing and direct care to talk about what are some of the specific barriers for people with disabilities living in New Hampshire, and how we can work together to bring down those barriers. And make this a much more accessible community for everyone.
Thanks for listening, and I’ll talk to you next time.
Episode 1: Interview with NHCDD Executive Director, Isadora Rodriguez-Legendre
In our first full-length episode, Vanessa Blais talks with the Executive Director of the NHCDD, Isadora Rodriguez-Legendre, about the work of the council and how to get involved in advocating for a more inclusive world.
Learn More:
NHCDD website
HCDD 5-year plan
Do you want to know more about Supported Decision Making?
Episode 1: Interview with NHCDD Executive Director, Isadora Rodriguez-Legendre
Episode 1: Interview with NHCDD Executive Director, Isadora Rodriguez-Legendre
Transcript of video:
Vanessa: Welcome to That's Inclusive! Where we talk about disability and what it means to live a full life, engaging in our communities. What does that look like? And how can we work together to make our world a more inclusive place? Welcome to That's Inclusive! with Isadora Rodriguez-Legendre, the executive director of the New Hampshire Council on Developmental Disabilities.
Isadora: Hi,Vanessa!
Vanessa: Hi Isadora! How's it going it's going?
Isadora: It’s going pretty good.
Vanessa: Great! I'm glad to have you here. Thanks for coming.
Isadora: Glad to be here.
Vanessa: So, tell us what is the New Hampshire Council on Developmental Disabilities, and why should I care about it?
Isadora: That's a great question. So, the New Hampshire Council on Developmental Disabilities is a federally funded state agency that was created by a Federal law known as the DD Act. It's actually called the Developmental Disabilities Assistance and Bill of Rights Act. And that act created DD Councils, as we refer to the Council as.In every state and territory to really help identify the needs and help address those needs on the ground in the state where it's situated. So, in New Hampshire, what we do is we do a lot of what we call data collection. We do surveys and feedback sessions, and we really poll our community to find out what the most pressing issues are. And then we create a 5 Year State Plan to help address those needs. The Council's mission is that we're dedicated to dignity full rights of citizenship, cultural diversity, equal opportunities, and full participation for all New Hampshire citizens with developmental disabilities. So, we carry out our mission through education, advocacy, and funding innovative projects that really make a difference in people's lives in New Hampshire, who experience developmental disabilities. But I like to say that we mostly work with other people. So, we collaborate with other organizations and groups that have similar visions of community inclusion and integration for individuals with intellectual and developmental disabilities in New Hampshire. And that's why you should care. Because it affects us all. To be able to have inclusive communities, we all have to be a part of that, and we all have to pitch in and and really advocate for accessibility, because when something is accessible for a person with a disability, it's accessible for everyone, whether it's an older adult or you know, a mom,with kids we have similar barriers, sometimes, to community access and so we're working to reduce the barriers in that way.
Vanessa: Can you tell me a little bit about some of your key partners?
Isadora: Yeah. So, I'll talk a little bit about membership, and then I'll lead right in. So, our federal law actually states that at least 60% of our council must be individual with lived experience of intellectual or developmental disability and or parents of kiddos who have developmental disabilities or guardians of adults who have intellectual or developmental disabilities that may not be able to advocate for themselves. So, the other 40% of our Council as temporary of what we call community partners or agency states. So, we have represented things like vocational rehabilitation, education for people who need supports and services. We have the Bureau of Developmental Services in New Hampshire. We have our DD act Federal partners, which include the Institute on Disability at UNH, and the Disability Rights Center, New Hampshire, and then we havea private provider network. We have organization called New Hampshire Family Voices, which really focuses on advocacy and information for parents of children who are currently receiving supports in the school system. We have a number of different organizations that we work with. So, we partner with them on a lot of different things, like trainings and conferences and different activities. And we also partner with what we call adjacent organizations. So, these are organizations and groups that are working on different priorities that actually impact the disability community but not it's not a disability group. So, for example, groups working on housing access, right? So, for our community, housing access is a big issue. But it's not a disability housing group that we belong to. We actually go to different housing groups around the state, and we talk about how it's important to remember that to create, not just housing that is accessible for people with disabilities physically, but also kind of universally designed in a way that is more acceptable for anyone who might the lower light switches or wider door frames, or things like that, and then we also advocate for affordable housing, so that the people that support people with disabilities can also afford to live in the community and be part of providing kind of this community integration, that we talk about for people with disabilities.
Vanessa: That's great. So, what are some other initiatives that the DD Council works on?
Isadora: So, we work on a lot of different things. And so, our 5 Year Plan currently has 2 really, really broad goals. And that really enables us to focus on a larger rate of issues by essentially lumping them into a category called quality of life. So basically, anything that improves community access or quality of life, including quality services or people with disabilities included under that goal. And that way we can support a number of different programs and agencies in the work that they are doing to make things more inclusive and more accessible for people with disabilities, and we mostly do that through small grants to different projects so for example, when we would support something like an accessible trail, or a universally designed playground for kids, so that the ideas that people with and without disabilities, or you know, anyone who might have a difference that needs to access the community in some way, we're we're kind of breaking down barriers and creating opportunities for people to participate in their community. So, we like to say to live, work, and play right? So, recreation is a big part of what we think is important to have a robust community-based life for people with disabilities and community.
Vanessa: So, what is something that you're especially focused on in the upcoming year?
Isadora: So, I would say so. The other goal that's currently on our Five-year Plan has to do with advocacy and training. So, we support a lot of different initiatives that are really about building awareness about the needs of the disability community, how people with disabilities can contribute to their communities, how actually having inclusive settings it, it creates a more cohesive workplace, for example, a more cohesive classroom, because you have people working together with and without disabilities and so part of what we include as part of our admission and training. It's really we want more people with disabilities, who are of culturally and linguistically diverse backgrounds to get more involved. We've seen at the DD Council that a lot of our members because they're it's a volunteer position, right? You have to have the time you have to have the ability to really attend meetings and get involved in projects and a lot of people who are involved are kind of, you know, middle class families who, where maybe one parent had some time to to really invest in advocacy and working towards improving the system in some way, and so what I have seen while I'm at the Council is that there there aren't really a lot of people who are first generation immigrants who may have a language barrier, or you know who who English is not their first language. A lot of folks in this situation are not at the table, and so you know, when I first moved to New Hampshire, I heard someone say, if you're not at the table, then you're on the menu right, and that really struck a chord with me because it's true. Unless you're there to lend your voice, people are making decisions for you, without you. And so the disability community has a great slogan call, and that's that's nothing about us without us. And I think that it's it's especially important in this day and age where diversity, equity, inclusion, is kind of at the forefront of a lot of our conversations that we have, you know, a diversity expressed in our membership, in our resource availability that we are translating documents, that we're making that extra warm invitation to folks that haven't traditionally been at the table and say hey? What you think is important to us. We need to know what your issues are. We need to know what your barriers are, because otherwise we're only, you know, we're only looking at half the picture, and you know, traditionally decisions are made by those who are in power and and who are of the majority. And so for me, it's especially important to think about how the Council can be more inclusive and more diverse in its membership, and bring those voices to all of these different meetings, all of these different decision makers, policy makers. We need to really be intentional, and how we address the barriers for communities of color and communities with diverse culture and linguistic backgrounds, because if we don't do it, you know who is?
Vanessa: That's a heavy lift, because you not only have families who are already having to like deal with so many challenges, raising kids or having spouses or family members who needs supports. And then you kind of like, bring in that some people are new Americans, a lot of like immigration and and refugee settlement, especially in Manchester, and they are already having to navigate those challenges, and then I mean, New Hampshire is not a very diverse place. Right? It's pretty white, so that's a big challenge. How, how do you think that the Council can address those challenges?
Isadora: Yeah, I mean, that's a great question. It's kind of a question we've been asking ourselves. So, you know, especially the last couple of years, when there have been some threats to how we talk about race and culture and inclusion, and you know the the good thing that's come out of that is there has been this kind of very intentional movement around diversity, equity and inclusion, and you know part of how we're getting people involved or or getting the message out. There is by getting people involved with those groups. A lot of folks are focused on, you know race and ethnicity as they talk about diversity, and we’re there at the table saying, Hey, don't forget disability. It's part of diversity, you know, just like you know, LGBTQ as part of diversity, just like, you know, don't forget about people with invisible disabilities, like mental health conditions that also need supports to be included in these conversations. And so, we've made a commitment to kind of be more again intentional about how we outreach to different groups and organizations, working with people who might be new Americans who might be of, you know, have a where English is not their first language we're translating a lot of our materials into Spanish and trying to message that we are able, you know, to get things translated into any language that's someone might need it. We have the funds available to be able to get things like interpreters for people who would want to get involved, or who, you know maybe they want to testify on a bill and we would want to support them in whatever way they would need to be supported in order for their voice to be heard. But a big way, you know, is really just getting getting the message out there. So, getting involved with initiatives like 603 Diversity, which has a magazine that talks about diversity and inclusion, and I wrote an article there to talk about disability, and how important it is to include disability in those conversations. We're really trying to be intentional about inviting people to become members of the DD Council and of other groups like, if the council is not your jam, then there's another group that you could certainly join that is going to be working on, you know, quality services and supports for individuals who need supports and and also just you know again making sure that that the the perspectives of people who represent diverse backgrounds are considered and valued and taken into consideration when decisions are made about policy changes or about initiatives that are meant to improve the lived experiences of people. Again, you know, because we don't know what we don't know, and sometimes there can be unintended consequences with moving forward on a project and not getting input from all of the communities that it might impact.
Vanessa: So, when you are also trying to get buy in from the council members themselves, how do you go about doing that?
Isadora: Yeah, I I mean, I love our council. I think it. We have a very broad array of people represented so different disabilities, different groups and organizations. We have parents, we have different regions represented, and I think at the end of the day what I have seen time and time again is, even if people don't agree on something like we're all there for the same reason. Everyone’s mission is more inclusion, more integration, more supports and services that can help people live authentic community-based lives in and in wherever they want to live. Right? However, they wanna live. And so creating opportunities for authentic relationships and opportunities for leadership development is especially important to us. We really want to give people with disabilities and family members the opportunities to access different trainings and advocacy platforms that they might not have been exposed to previously. But you, you know, I think again, as a community, I think that we're stronger together, and that people know that. And people come together at the end of the day. Whatever their differences are. If there's a if there's a bill that needs support, or a topic that really needs to be addressed or something going down in the in, in the service system that could impact families like people come together, and they rally around that that cause.
Vanessa: So, if you if someone is of a more diverse background. Or maybe English is not their first language, and they become interested in the council but they're not really sure if it's their place a place for them. What would you want them to know about the council, to let them know that there is a place for them there?
Isadora: Yeah, I I think so. My message to those folks, or to anyone really, who wants more information is like, there's no there's no charge for for learning more right? You can learn as much or as little as you want without committing yourself, right? We, our meetings are public, we are open about sharing our goals and our priorities. We ask for volunteers, even if you're not a council member, and you, wanna, you know, support us by being at an information table at a pride event, or at a parade or some any activity that we're located at that I think we could use volunteers, and we could use people and their voices to really champion the work that we're doing. But I I would I would, you know, say that again, we want to make it as easy as possible for people they want people to get involved. And so if someone has the barrier has the concern or has an issue like, just let us know, and like we'll do our best to try and eliminate that barrier, or if provide some sort of opportunity for you to lend your voice, so some of what we've done in the past includes like, if someone can't be physically somewhere, we would still want to collect their you know, whatever their story is, whether it's through a podcast or Youtube, video, or you know, a Zoom video or, one of our members is doing like little interviews, I think it's important to collect those stories and to share them with other people who, you know, may have different perspectives on things, and so bringing that awareness to light and and reminding people that just their personal experience is their personal experience, and nothing more and nothing less, right? There are lots of people out there with different experiences and that we need to be considerate, as considerate as we would want someone to be of our experience. We need to value and champion other people's experiences. So, I would say that I would say that it costs nothing to get involved, and you can do as much or as little as you can you know, as your time and availability allows, but having more information, never hurt anybody.
Vanessa: And so, speaking of personal stories, I know the Council has started doing some more intentional story collecting. And so if someone wanted to tell their story, how would they go about doing that?
Isadora: Yeah, I mean they. There's a number of different ways, right? So, if you have a topic that you would, it's you think it might be worthy of a podcast, we can invite you on the show, and you can do a podcast, you just want to do a zoom recording and so we could put that on Youtube. We can do it that way. Some people write their stories down, especially if, for example, a lot of what we do is monitor bills and legislation, and so, if there's a particular bill or a potential piece of legislation that it's gonna impact somebody in a significant way, we would want to collect their story and share it with policymakers and really share it with decision makers so that they have a full picture of what the consequences might be of law that they pass, and so that's another way that people can share their stories through testimony or through just, you know, and and again, we want to eliminate barriers. So, if someone can't write in English, or you know, doesn't use words to communicate like we will, we will work with you to get that story collected in some way, and then share it with decision makers so that your voice can be heard.
Vanessa: So, speaking of the legislature. Can you talk a little bit about what the council's relationship is as far as the legislature and other policymakers?
Isadora: Sure, I mean, we're we're in an interesting position because we're a state agency so we are not allowed to lobby also, because we receive Federal funds. However, we do impact and influence decision makers through story collection and through sharing of member experiences. So that's why it's so important to collect as many different types of stories from the disability community as we can. Because you again you never know how your story is going to really impact somebody's decision. And how they see the world, and and if you can get them to kind of see the world through your lens for even just a split second, sometimes it's enough to really make a huge change, a huge impact, and and how they vote, or how they speak with their colleagues about an issue, or how they, you know, really support other constituents around an issue, and so we build relationships with legislators, especially those who you know have a demonstrated interest in disability issues. And then you know others who maybe don't and need a little more information about why it's important to really understand the the needs of the disability community and how those needs can be supported through policy that's that's a big part of what we do. Right? We we through our sharing of stories, we help people under this whole other community, that they may maybe didn't know about or didn't understand the significance of what some idea they had, how that's gonna impact their lived experience on the ground. And so, yeah, our policy work is really, really important
Vanessa: And policymakers aren't expected, you know, like the legislature has, you know, hundreds of bills that they have to, yeah, vote on. And they're not really, you can't expect them to know everything about everything. So, it's important for people to be there to give them the information so that they can make better decisions for the whole community.
Isadora: I mean, a lot of people don't even realize that that's how a lot of the bills even get written as somebody goes to their local legislator in the New Hampshire. You know they could be your neighbor. They could look down the road, or you could meet them at the supermarket cause. There's so many of them that they're so accessible. And and typically someone will come to a state rep or senator and say, Hey, you know I have this issue, or I have this concern, or you know, what do you think about this? This is this is something that's important to me and my family, and I know it's important to other families, too. Let me tell you about this problem, right? And then legislators, they're doing their job right. They're responding to the needs of their constituents and the community by saying, Hey, you know I think I'm gonna take that idea or that issue and make a put in a bill that can help address that. So that you know my constituents and people in my community no longer have this difference in access or this concern, or whatever the thing is right and and then that's how typically I'm bills get put in. So, anyone can put in a bill. Any legislature can put it in a bill that's that's basically based on a conversation that they had with somebody who lives in their districts. And so, it's important for people to know that and to know that like, that's their job is to listen to you and to really take into consideration what your needs are, and to think about ways that those needs can be addressed. And and fortunately, you know, we also have. We have other states that we can look at and say, Oh, wow! They're doing a really good job at this thing. Maybe we want to put in a bill that's like, gonna make New Hampshire do that thing, too. So that was the case with supported decision making which passed last year, and that's an alternative to guardianship. So that's an example of a bill that was really a great idea that other states were already doing. And you know we got a legislator to put in a bill. And and now it's a law. And and so anytime schools are talking about guardianship with parents, they're they're also responsible for telling them about supported decision making as an alternative which really is more person-centered and it puts the individual in the driver seat rather than you know, stripping some rights away and having parents or guardians make all of the decisions for for them, they get to choose who their trusted supporters are that are going to help them make decisions for themselves
Vanessa: And that bill is very exciting, very exciting, and so how is the council helping to move forward? I mean, cause you can, you can have the law, and then you have to live out the law. Yeah, and so, how is the council a part of unfolding this new way of thinking about guardianship and thinking about people's lives of self-determination?
Isadora: Yeah, so that is a really exciting part of what we are able to do. So, when there's something big like that, I mean, this is the huge. This is the game changer for our system, right, when there's something big like that. I'm also that have like it's a best practice, right? It's like I I I don't know if it's evidence-based, or what it or whatever. But I think that like this is an ideal for how we would want to approach the the self-determination of individuals with lived experience of intellectual and developmental disabilities moving forward is to really have them be able to make the decision that they can with you know someone helping them understand the the pros and cons of something. So, we were able to, because it's such a big deal we were able to put out an RFP, a request for proposals, to to really fund some education and training around this new law cuz this is a new law so, not only to parents and individuals and families need to learn more about it, but so do attorneys and judges who are granting guardianship or supported decision making and other organizations that are really responsible for in essence ensuring that an individual's rights are are are not being, and that so? I, at any rate so we put out an RFP and we funded a training and education project that's being led by the Disability Rights Center of New Hampshire and we're happy to see we just extended that because there's still a lot of work to be done. But it's really been amazing to see kind of presentations around this topic. And then how people are really kind of, you know, taking note and and and doing something different, or thinking differently about how an individual can be supported to make decisions. And I want, I want to say that a lot of the guardianship situations before this was a law were in essence supported decision making and that now we have, I know the legal way to change the guardianship to a way of supporting individuals that is really more person-centered and self-determined.
Vanessa: Yeah, it's, it's like the next step after you know, New Hampshire, closed its institutions. You had to convince you, had to have a complete cultural shift yeah, you had to complete you had to convince people that this was a vision that can be a reality. And then there's supported decision making, which is kind of the next step is being able to convince people that you don't have to have complete control over someone's life. They, they are capable of making decisions. So, what do you think if you had a magic wand, what would your next step in that cultural shift be?
Isadora: Oh, so many things I mean, I think a lot of our a lot of our barriers come from just I I wanna say, like institutional barriers that just have been around forever like you were saying it, a cultural shift. Not only does it take time, and it takes like really intentional, meaningful effort and resources. And so my magic wand would be that we would have all of the resources that we would need to really make communities more accessible to to build affordable accessible housing and workforce housing for people with disabilities and the people that support them, to ensure that we have broadband access throughout the states so that people with disabilities can be connected to folks through Wi-fi and through cell phones and through zoom meetings and all of the things that in this virtual world that we are living in and we take for granting having wifi access and and transportation right? If we had theresources to really develop and maintain and accessible transportation for people, then, like sky, is the limit. Right? Access is key. And so when you can't get to work, cause you don't drive, and there's no bus, and there's no train, then you can't get to work right. You can't work and that's a huge, huge barrier. There's lots of people that wanna work, but they're aren't the supports and services or the resources available to really get them. What they need to live the life that they want for themselves. And so my my magic, wand?. My wish list is that we would just have all the resources that people need, whatever they need. That's what that's what I want.
Vanessa: So, to wrap up. is there anything else that you want to add about the council?
Isadora: Hey, I mean, I just wanna take this opportunity to like, you know give a call to action. I really, I really want people to get involved. I want people to know that like your voice is important to us, that we really need you at the table. We want to make sure that your needs are being met. But if we don't know what those needs are, then there's no way for us to even know what to ask for. And so, I want people to to think about that, to think about getting involved. And if it again, if it's not at the DD Council get involved with your local school support system, get involved with your local, you know, legislators, or get involved with different community groups that are involved in making parks more accessible or bringing more inclusive recreational opportunities to your area. So, I wanna say that it's it's this is again, I think I said it at the beginning, but it's it's all of our responsibility to make more inclusive communities. And and so we need to know what people need in order to make sure that we're building the best, most accessible communities for people with and without disabilities.
Vanessa: Perfectly said. Thank you for joining us today.
I'm Vanessa Blais. This was a production of the New Hampshire Council on Developmental Disabilities produced by Isadora Rodriguez, Legendre, and Vanessa Blais with many thanks to Josh Hardy and rest of the crew here at Concord TV. We love to have guests with differing perspectives. These are personal, and do not necessarily represent those of the DD Council.