That’s Inclusive! Podcast

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

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 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 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 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 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 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. 

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 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 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 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 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 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 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 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 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.