Filmmaker Dan Habib explains how he and his son Samuel have used the power of documentary films to promote acceptance and inclusion for people with disabilities.
Dan Habib is an award-winning documentary filmmaker and is currently director of the Inclusive Communities Project at the Westchester Institute for Human Development. Dan's films include Who Cares About Kelsey?, Including Samuel, Intelligent Lives, and his most recent film, My Disability Roadmap, which Dan produced along with his son Samuel, who experiences cerebral palsy and epilepsy due to a rare genetic disorder called GNA01 neurodevelopmental disorder.
About Northeast Arc
Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.
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Hello, and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the president and CEO of Northeast Arc. Today, I'm thrilled to be joined by Dan Habib. Dan is an award-winning documentary filmmaker and is currently director of the Inclusive Communities Project at the Westchester Institute for Human Development.
Dan's films include Who Cares About Kelsey?, Including Samuel, Intelligent Lives, and his most recent film, My Disability Roadmap, which Dan produced along with his son Samuel, who experiences cerebral palsy and epilepsy due to a rare genetic disorder called GNA01 neurodevelopmental disorder.
On the most personal level in terms of a surprise was how incredibly candid they wanted to be with Samuel, how honest and truthful. Like, they just wanted to cut through the BS and tell him exactly what their experience was and what their feelings are. I don't think I could have drawn that out of them. I think it was Samuel as a 22-year-old disabled man. They really wanted to tell it like it is.
Dan, like many of our guests we've had on this podcast, this work is personal for you. Can you start by telling us about your son, Sam?
Sure. So Samuel is-- Sam or Samuel. He likes both names. He is 22 years old now, which is hard to believe. And we also-- Betsy and I also have an older son, Isaiah, who's 26. And Samuel is a huge New England sports fan, loves the Red Sox, Patriots, NASCAR.
He's going to college. He's about 2/3 of the way to his associate's degree at a local community college. He and I work together, as I'm sure we'll talk about, on our film work quite a bit. He's got a great social circle.
Samuel also is very complex. He is a young person who uses a wheelchair, a communication device. He has this underlying genetic disorder, GNA01 neurodevelopmental disorder, that can cause seizures. He has a feeding tube. He doesn't read easily. He fatigues easily. He deals with the ableism of our society.
So I'm giving you both sides of Samuel. He's got this very full life, and he's got this very complex life. So that's a quick snapshot. I'm sure we can talk a lot more about who he is as a person and the work he's doing.
I like the comparison of full and complex. I actually haven't heard that description, and it sounds so accurate but also so valued.
Yeah. Yeah, I mean, I think-- I think it's-- we try to be honest about all aspects of Samuel, just as I try to be honest about all aspects of myself. We all are all complex people. But the reality is that people like Samuel, who have very significant disabilities and health issues-- there's a whole other level of complications to life that have to be navigated. And one of the-- as I said earlier, one of the biggest forces working against us is the stigma around disability in our society, so that's why we put so much effort into that work in our lives.
Well, that leads me to talk about your long background as a photojournalist working in New Hampshire. But at some point, you decided to focus on documentary filmmaking. Was that in relation to Samuel? Or is that an evolution of itself?
100% in relation to Samuel, never something I would have ever imagined doing. I was a photojournalist and enjoyed my career very much for 20 years full-time as a photojournalist. And when Samuel was about three, after we realized he was going to have a lifelong disability, he, at one point, actually got very, very sick. He aspirated some blood during a tonsillectomy that we had done when he was three for legitimate reasons, but it didn't go as smoothly as we had hoped.
And he got very sick in the hospital in-- up at Dartmouth here in New Hampshire. And as he was recovering, and they had to intubate him for a while. But when that came out, his neurologist, who's incredible and still part of our team, turned to me and said, have you ever told the story of what it's like to be a parent of a child with a disability in a complex health issue?
And I hadn't. I mean, all my work had been outward facing on politics and domestic issues. But I started photographing in the hospital, and just to burn off stress, honestly, more than anything else, just to get-- do something other than worry. And I started thinking about that, about, could I tell our own story and could that be helpful somehow in the general discussion?
And then I decided to do it as a film because I really wanted young people to connect with this story, and I'd heard from young people that video was the currency of their communication. And this is back in 2004, so just imagine how much it's grown [CHUCKLES] since then in terms of the presence of video in our lives. So I just bought a camera, called some filmmaker friends, and learned how to start, in a very rudimentary way, making a movie. And that ultimately became Including Samuel about four years later.
Which really was a touch point, I think, for families and individuals with disabilities around thinking about inclusive education, which, unfortunately, many families are still fighting for today. You've been able to use your films to promote acceptance and inclusion for people with disabilities, especially in school and in the workplace. Why do you think documentary is an effective medium for this kind of work?
Well, you mentioned Including Samuel, and that was a real eye-opener for me because I honestly had no preconceptions about what that film would do or where it would go. I just thought maybe it could have an impact in New Hampshire. It could really look at our efforts to include Samuel in every aspect of our lives and our family and our community and our neighborhood, and most importantly, in his own neighborhood school, I mean, perhaps because we couldn't imagine how he would feel truly included in our community without feeling welcome at the school a quarter of a mile from our house where all of his friends were going.
So once that film about his efforts to be included and our efforts to include him but also the stories of these other families that we focused on in that film-- once that came out, and just through word of mouth, went all over the world, unbelievably, got translated into 17 languages. It's still being used all over in colleges and schools around the world as a catalyst for inclusive education, disability rights. That taught me the power of documentary film in a way that it could create discussions that need to happen, honest discussions, unfiltered discussions about, what are the barriers for people with disabilities in school and society?
How can we create classrooms that are truly universally designed to accommodate and support all kinds of learners? Why is it so valuable to kids without disabilities to be learning alongside kids with disabilities? What's the impact on families to have their kids included? What's the impact on a young man like Samuel, who I deeply believe would not be in college now and would not be working unless he had had an inclusive education experience?
There's so many things to talk about, and I think my background as a photojournalist allowed me to do it in a very honest and intimate way, to do that storytelling. And I think that's what people want. They want honest, intimate stories told in compelling ways, visually interesting. And video allows them to parachute into those schools and into those families in a way that they couldn't normally do, and I think video brings you into people's lives in a way that still photography can't always do.
No, it was and continues to be, as you say, a groundbreaking film. And I think, for me, what resonated is that so many of the films prior or the projects that are being done really talk about students who are more easily included, and we talk about those as-- and hold them up to the world as that's what disability is.
And Samuel is really the honest, true, as you say, unflinching story about what disability is. And how can we ensure that students like Samuel all over the world are included? And I think that's, to me, what the message of your film was. You didn't start.
Yeah, I appreciate that. And people who know, including Sam, will know that I also focused on a young woman with schizophrenia, and I wanted to show that was a reality and another young person with intellectual disability. So I think that Samuel has one profile, but it's just one person. And with each film I do, I try to think about, what are the communities that I have not yet represented yet? What are the people that I've not yet told their stories?
And so when it came time my next film, I decided I really wanted to focus on kids or young adults with emotional behavioral disabilities. And that became the film Who Cares About Kelsey? And that was another person, Kelsey Carroll, who was not easy to pigeonhole. And it was not easy to say, oh, sure, well, she's easy to include, but I've got this student. And Kelsey had a lot of complicated emotional behavioral challenges, trauma in her life, abuse she had endured, all kinds of difficult things.
So with each film I do, I think, what's the story that needs to be told? And how can I tell it in an authentic way and put that person in the forefront of the storytelling, not me be the storyteller, but allow the person who's in the film to really-- allow their voice to come forward?
And you picked the right medium because even though we didn't in know in 2003 how powerful video would be, it certainly has taken over our contemporary society and certainly young people. And we saw that so much in the past few years during COVID.
Yeah. Yeah, I like to-- sometimes, when I'm speaking to an audience in talking about this, I'll ask for a show of hands-- how many people have watched a video at some point today? And almost everybody in the room raises their hand. And 15 years ago, you would not have gotten the same answer.
And I can probably say that as well. But your most recent film now actually involves Samuel in a different way because he's joined you as a co-director. Can you tell our listeners about My Disability Roadmap?
Sure, I'd be happy to. So even though I think I have some insights and some credibility as somebody that's been working in the disability world now for 20 years, really, since Sam was born, 22 years, and living it day-to-day as a parent, I'm still-- I'm not a person with a disability. And I truly believe that the most authentic storytellers are the people that experienced that reality, whether that's around race, whether that's around gender identity or sexual orientation, whether that's around socioeconomics or ability.
And so Sam and I talked for quite a while about, what's the story he wants to tell in his own life? And he was very passionate and interested in talking about his transition to adulthood and what that was like. And he's also on this journey to figure out how to navigate it, how to navigate employment, and education, and relationships, and living on his own, and transitioning to the adult health care system, and guardianship issues, and all these things that are the reality of transitioning to adulthood for almost anyone, but particularly someone with a disability. There's a lot of extra elements.
So we came up with this concept that he would-- we would document his life transitioning to adulthood partly through my camera work but largely through his own GoPro camera work, having two GoPro cameras attached to his wheelchair, one facing out, one facing in towards him, so his perspective on the world. He would narrate the film through his own voice and give his own perspectives. And then he's on this journey to interview and talk to amazing, trailblazing adults with disabilities around the country about their experiences, transition to adulthood.
So we did a lot of research and a lot of thinking about who those people might be, and we narrowed it down to some people we've known for quite a long time, like Judy Heumann that I'm sure you and many of your listeners know; Keith Jones, who was in Including Samuel, who was Boston based at one point; Bob Williams, who's an incredible leader in Washington, DC; Maysoon Zayid, a Palestinian-American comedian; Andrew Peterson, who experiences fetal alcohol syndrome, who lives out in Indianapolis; Lydia XZ Brown, who is an autistic queer advocate based down in Maryland; and Ali Stroker, who is an actress, a Broadway actress, who won the Tony Award.
So it's a very diverse group in just about every possible way you can imagine. And Samuel has done multiple hours of interviews with each of them, almost all of them in person. Ali Stroker is the only one that we did on Zoom. But all the other ones, we traveled to do in person.
So we started working on this feature length film a couple years ago. And at one point, we had a 12 minute-- we call it a trailer or a sizzle reel. And we shared it with the New York Times, and they really loved it. And they said, we'd like to work with you to develop this into one of our Op-Docs, which is their short video series.
So we worked with months with them to develop it into an Op-Docs, a 23-minute Op-Docs that premiered in May of 2022. Since then, it's been in film festivals and picking up some momentum this fall while we still work on the feature length film, which is going to come out in 2024. So it's been just an absolutely joyful, amazing process to work with Samuel on this, to co-direct it, and to meet all these incredible people that he's gotten to interview.
Were there any surprises from the individuals participating in their reaction to Samuel? Because so much of the disability community, I think, still has-- is polarized, still a little siloed, and wondering if Samuel has and-- has had and will continue to have an impact in breaking some of those down?
Well, I think, just on the most personal level in terms of a surprise, although maybe it wasn't fully surprising, was how incredibly candid they wanted to be with Samuel, how honest and truthful. Like, they just wanted to cut through the BS and tell him exactly what their experience was and what their feelings are. I don't think I could have drawn that out of them. I think it was Samuel as a 22-year-old disabled man. They really wanted to tell it like it is. So that was pretty powerful.
I think that we've tried to be very mindful of the different experiences of people who all have experienced different disabilities, who live in different socioeconomic situations, and who also experience other intersectional factors around race or gender or gender identity. So Samuel's experience as a white male with a physical disability is not the same as Lydia's as a queer Asian person with autism.
And I think we've really leaned into that reality, that there are some very different experiences based on multiple parts of your identity. So I wouldn't say that it's a surprise. But it's, I think the depth of different experiences remains very powerful when we talk to people who have just different experiences than Samuel.
In the past few years, I think, as our-- we've had more difficult and sometimes challenging conversations around the intersection of race and identity, sexual identity and disability, I think we've begun to feel a connectedness among some disconnected-- that may have been disconnected in the future. And it sounds like Samuel might be a catalyst for more of those conversations to happen even beyond his film.
I hope so. I mean, the film-- I think that Samuel and I both feel we can have the most impact through film. I think his-- he certainly has a lot of impact just in his daily life, just interacting with people and living the life he does. But the beauty of film and the work we're doing is-- and the platforms we're able to have partnership with, like the New York Times-- it really does amplify the impact. I mean, there's no doubt. It's what I love about this profession.
And I do think that this notion that-- there are a lot of people that are marginalized in our society for a lot of different reasons. And when you hear someone like Keith Jones talk about how, not only is he perceived as a man in a wheelchair with certain presumptions that people make. But as a Black man in the wheelchair, people will often say to him, how'd you get shot, or when did you get shot?
And I remember the first time I heard that from him. It just blew my mind. Or Maysoon doing comedy work, and then 9/11 happens. And she's a Muslim woman. And how do people react to her as a Muslim woman?
Suddenly, she's potentially seen as, quote unquote, "part of the enemy," because that's where America was going for quite a while and still is in many ways. So I think hearing those things has had a big impact on Sam and I, and we want to bring that intersectional perspective out into the public in every chance we can.
Did you learn anything new about Sam in this project, where you're co-directing, and you're equals, and the father-son relationship is present, but there's another layer now?
Yeah, that's a great question. I mean, our lives are so intertwined [CHUCKLES] that it's not necessarily through the film work we-- I mean, what I've learned, honestly, is his ability to stay focused on certain professional things that have to happen when you do this kind of work. I mean, it's not easy work, and we have to have some really intense meetings and a lot of travel.
And he has to stay focused for multiple hours in an interview, despite the fact that his seizure meds have kicked in, and he's exhausted, or that we didn't get a good night of sleep, or that he's just working so hard to communicate every day. It takes so much energy. So I've just been in awe of his ability to understand the work and the challenge we're doing and really lean into that. And frankly, any 21, 22-year-old person-- I'd be impressed to see them do that.
But Samuel has a lot of extra things he's navigating while he's also staying focused as a young man who might just really want to go into the streets of New York and look at pretty women. [CHUCKLES] He had his druthers and not-- I'm just joking, because he really does love these interviews. But he's a young man. And like a lot of young people, your attention is drawn a lot of different directions. But he's been able to stay very focused on this work.
As you've been describing the work that Sam is doing together with you and the need for him to lean into some things, and then you bring me back to the fact that this is a 22-year-old kid, I mean, they're not cooked yet. And Sam actually seems to be a little more ready than other--
Yeah, he is.
--kids.
He is. And I think the other thing that continues to blow my mind about Samuel is he never gets nervous about public speaking and these situations. He has an incredible sense of belonging and a sense of confidence that I'm jealous of sometimes because he-- I mean, people ask all the time, do you get nervous speaking in front of a group of 300 people or being on a Zoom, like we're doing tomorrow? We're doing a webinar, and we've got 2,000 people signed up. He's never nervous. [CHUCKLES] And that in itself is a pretty unusual life skill, I think.
Yeah, something that we need to understand how he acquired that skill and share it with others.
Right.
Let's shift a little bit to your latest venture, which is leading the Inclusive Communities Project at the Westchester Institute for Human Development. Tell us about the Institute and the goals you have for this project.
Sure. So yeah, I worked at University of New Hampshire for about 12 years and had a great 12 years there. And I actually started the inclusive communities project at UNH, at the Institute on Disability at UNH, which is part of this network called University Centers on Excellence in Disability, or UCEDs, around the country. And Westchester just gave me a really great opportunity to come and move my work there.
And in part, it was reaching a larger audience because New York is a big state, and you can reach a lot of people in New York and beyond, but also an even more diverse audience. I mean, I live in New Hampshire. I love New Hampshire. It's not the most diverse state. I think that's pretty clear just through our demographics. So to be able to then move my work to a New York audience where I can reach more people and reach them-- an even more diverse audience was very appealing to me.
And the whole goal of the Inclusive Communities Project is to create greater inclusion in all aspects of society-- education, employment, our communities in terms of housing, social lives in every way push forward disability rights through the power of media, through the power of documentary film, photography, presentations.
We do a lot of-- Sam and I do a lot of professional development and public speaking and showing our films, talking about them, leading discussions. We do that for self-advocacy groups. We do that for teachers. We do that for colleges.
So somehow, we've put together this mix of things that has worked to make films, to get them out there into the world, to then leverage the power of those films to create community conversations in all-- in all areas. And the whole goal is to create a more inclusive society and really take on ableism head on and challenge it and get people to understand, it's really not the path we want to continue to follow in our society.
Well, it's one that here at the Northeast Arc is one we support completely, is trying to make sure that people with disabilities are really fully included in all aspects of their life. Right around the corner from us, we have a coffee shop. It's called Breaking Grounds. It's not quite breaking even, but we've trained 35 people. And now they're working in coffee shops and other places all around our community.
And the goal is not to have a segregated coffee shop, which you go in and you expect to see somebody with a disability. But they're going to spend some time there, and I think we're-- we've got people at 11 different Starbucks. And that's where people go and get their coffee, at Starbucks. And they're going to--
That's exciting.
--see our folks and--
Oh, I love that. And as you know, it's also-- work can be a big part of your social life. And I think that it's really difficult, I think, for a lot of young people when they leave that built-in social scene of high school. And for some people, that's not even a great scene. But for some, it is. And then you drop off into this world of adulthood. And how do you meet people? How do you connect with people? Where is the interaction every day?
Work is a really important piece of that in addition to bringing money in so that you can live the life you want to live financially. Not everyone can go to college, but we also really are doing a lot of work to show the pathways for college for young adults with disabilities, including those with intellectual disabilities, because, as you probably know, there's so many opportunities now through the Think College network for people with intellectual disabilities to go to college, so yeah.
And I think, when we talk about inclusive societies, some people say it in word, but not in practice. And think you're trying to do it in practice. We're trying to do it in practice. We're trying to show, what's the absolute best vision we can have for that? And what does that look like? Through our films, through our interview, we're trying to show what's possible. What are the possibilities?
I love that. I'd love to talk to you offline about an idea we have in housing to make it really, truly inclusive. But you talked about something that I've often spoken about, which is, how do we ensure that folks with disabilities develop social capital so that they can use that and apply that throughout their lives?
Rather than depending on-- as my son, I-- when you talk about Sam being 22, I realize, oh, my goodness, that film is 20 years old. And my son is now 43. Time really goes by quickly. And the transition from him, my son using my social capital to him developing his own social capital I look at as a marker of whether or not we're successful.
Yeah, it's a great-- it's a great point, and it's challenging. I think that I don't see a way to build that social capital without inclusion, without people being exposed to a lot of peers. And that starts in school because, if you're in a segregated classroom and you're only with the same 10, 12 kids every day, you're not meeting the other 500,000, 1,500, however many students there are in your high school, who you never know who you're going to be friends with.
I mean, Samuel is still hanging out with friends he made in kindergarten and elementary school, kids without disabilities, kids with hidden disabilities, just a variety of people. And then, when you get into the workforce, how are you going to build that social capital if you're not working alongside a lot of other people with and without disabilities?
And then some of it needs to be intentional. In my film, Intelligent Lives, which came out in 2018, '19, we filmed a scene with Naomie, a young woman with Down syndrome who lives in Providence, Rhode Island, doing a social capital strategy meeting, where she was actually thinking-- it was like a person-centered planning meeting-- thinking about all the people she's connected to. And how can that maybe lead to professional opportunities? So I do think, for people with disabilities, some of this needs to be very intentional. It can't just be happenstance to build that social capital.
Absolutely. I like to end these interviews sometimes on a personal note, and we both have a personal connection to this issue. So I'd be interested in advice that you might have to parents who are grappling with some of the issues that they have as they face their children going into adulthood, as you are facing with Samuel. And I'm struck by the fact that he's only 22 because [CHUCKLES] the emergence of adulthood, I think, is-- doesn't happen at 18 or 22. I think it's a process that will go on for a few more years.
Yeah, definitely. Well, I'm not-- I'm not one to just throw out lots of advice, because I think everyone can give advice to each other. But I'll just share some of my own experience. I think that when Sam was about three years old, I had a chance to speak with Bob Williams, who, I mentioned earlier, is now part of our new film, My Disability Roadmap. And he was very high up the Administration for Community Living in Washington, like a real leader in Washington. And like Samuel, he uses a wheelchair and a communication device.
So I asked Bob, what's your advice for me as a parent of three-year-old Samuel? And he said, give him choices at every juncture. Just give him choices at every juncture. And he was basically saying, allow him to self-determine his life. Build those self-determination skills at every juncture.
And I think that that's something, that we took Bob's advice. And we tried to give Samuel the opportunity to self-determine his life all the time, and that continues now. And sometimes, that can feel a little risky. Sometimes, it's a little scary for parents to allow their kids to make choices that may not be the same choice we would make, whether they have a disability or not.
But that gets to the other phrase that I really like, which is a well-known phrase in the disability community, which is, "the dignity of risk--" "the dignity of risk." And you're allowing people to have dignity by letting them take risks. So I think those are the two things that have guided us quite a bit, my wife, Betsy, and I, is allow Samuel to self-determine his life and understand that he needs to take risks to live a full life.
And we don't want to take risks that are going to endanger [CHUCKLES] his health and well-being, but we have to navigate that with our older son Isaiah, too. So some of that is just letting go as best we can and hoping that, ultimately, they've got the core strength and sensibility to make good decisions and live the full life they want. But at some point, you're parents. But you're not in control of their lives. They're in control of their lives.
I'm laughing a little bit because it's hard to sometimes let them take those risks as they get older, and I will tell you that technology has made it easier for me to allow Jonathan to take these kinds of risks because he lives all by himself. And he doesn't have any roommates or staff, but I can see where he is on his phone.
And one day, he looked like he was in the middle of a forest at 8 o'clock at night in the winter. Well, it turned out that's where he actually had turned off his phone as he was going into a movie theater. But I kind of stressed for a little while that he had somehow managed to-- [CHUCKLES] to go to a--
Yeah, technology can be a blessing and a curse in that regard, too, because it gives you sometimes more information than you need or not the most correct information. But I do think, in many ways, technology has really helped us and helped others. Samuel is living in his own place now, and we put in a sprinkler system and alarm system and just for health and safety. We wanted to make sure he's safe and that he can live more independently but with some supports in place that keep him safe.
Well, I'm glad you mentioned the technology you have for him because we are seeing that technology is probably going to be most useful for folks like Samuel to be able to ensure their safety. And I hope that our listeners, and if there are families out there, that will remember that Sam, with all his needs, lives an independent life. Technology can help him, and there are no real-- there's no limits for him, it appears.
Well, no. Yeah, I mean, there's limits for all of us. But I think you want to push those limits in our lives. And I think I'd be remiss to not also mention the incredible importance of direct support professionals in Samuel's life.
I mean, the only way-- he does need someone with him all the time. He can have a seizure at any minute. There's real health issues. But he has a great team of direct support professionals. It's such an undervalued profession. It's an underpaid profession.
We try to do our best to value his staff and pay them well, but it's hard. And not everybody is-- not everybody has the budget in terms of from the state to do that. And so we're just really, really big advocates for increasing the value and recognition and training for-- and pay for direct support professionals.
Thank you, Dan Habib, for not only this interview, but for helping us end it on a note, which is a salute and-- to our direct support professionals, who-- for whom our loved ones couldn't live without. And to--
Agree.
If you--
Agree. No, I appreciate it. I appreciate the time. It's great to talk with you.
If you're interested in seeing Dan's work, we'll have links to learn more about his films in the show notes. We want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives Fund, which was created through a gift from Steven Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit ne-arc.org.
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