EXPERT: How Storytelling Changes Disability Perspectives with Dan Habib

Hello Brave Friends! Welcome to today’s expert episode, #259, with documentary filmmaker and disability advocate Dan Habib.

These expert episodes feature conversations with professionals, advocates, and storytellers whose work supports caregiving families and the disability community.

In this episode, hosts Jessica Patay, Susanna Peace Lovell, and Dr. Zoe talk with Dan about his journey from photojournalist to acclaimed filmmaker and advocate for disability inclusion.

Dan shares how the birth of his son Samuel transformed both his family’s life and the trajectory of his work. Through projects like Including Samuel and The Ride Ahead, Dan has used storytelling and documentary filmmaking to challenge misconceptions about disability, amplify disabled voices, and advocate for systems rooted in belonging, mentorship, and interdependence.

The conversation explores the impact of mentorship in disability advocacy, the importance of authentic representation in media, and the lessons Dan has learned from Samuel about patience, communication, and community. Dan also speaks candidly about the fragility of support systems for families and the ongoing work of creating a more inclusive society where disabled individuals are valued, supported, and empowered.

Jessica, Susanna, and Zoe also discuss the emotional realities of parenting children with disabilities, balancing independence and support, and the importance of building communities where families feel seen and understood.

This episode is a thoughtful and inspiring conversation about advocacy, storytelling, and the power of community to create meaningful change.

Find more information about Dan Habib here. 

Follow Dan on social media here. 

Find more information about Licensed Psychotherapist, Dr. Zoe here. 

Find Dr. Zoe’s book, Stronger in the Difficult Places: Heal Your Relationship with Yourself by Untangling Complex Shame here.

Find more information about Life Coach, Susanna Peace Lovell here.

Find Susanna’s book, Your True Self is Enough here.

Find our first book from We Are Brave Together, Becoming Brave Together here.

Find our second book from We Are Brave Together, Suddenly Brave Together here. 

Find FULL episodes and clips of our podcast on Youtube here.

Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. 

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Transcript

SPEAKER_02 0:00

Welcome to Brave Together Podcast, an empowering resource for the parents of children with disabilities, neurodivergence, and all unique needs.

SPEAKER_04 0:13

But I think realizing that there are going to be times where you're doing more as a couple, as a partner, and the other person's doing less, but there's probably a reason for that. Work might be more intense for them at the moment, or they might be going through something emotionally that you're not going through, that you're feeling stronger in that moment. So I just think not blaming the other person and not thinking the other person's always coming up short.

SPEAKER_00 0:38

Hello, bravies. I'm your host for this episode, Susanna P. Slavelle, author, life coach, and advocate for disability families. And I am joined by my wonderful co-host Jessica Pate, brave mom and founder of the nonprofit We Are Brave Together, and Dr. Zoe, licensed psychotherapist, author, and fellow brave mom. On today's expert episode number 259, we are joined by documentary filmmaker and disability advocate Dan Haveeb. Dan shares the deeply personal story of how his journey as a photojournalist evolved into a life and career dedicated to disability advocacy and inclusive storytelling after the birth of his son, Samuel. Through films like Including Samuel and The Ride Ahead, Dan has helped shift public conversations around disability, belonging, mentorship, independence, and community. In this conversation, Jessica, Dr. Zoe, and I talk with Dan about the power of storytelling to create empathy and systemic change, the lessons his family has learned from Samuel, and the importance of disability culture and authentic representation. Dan also shares how mentorship and community can profoundly shape the lives of disabled individuals and their families while helping caregivers envision broader possibilities for connection, purpose, and independence. This episode is full of wisdom, honesty, and hope, and a beautiful reminder that inclusion is not simply about access, but about true belonging. A quick reminder to please rate and review this podcast, share episodes with your friends, follow us on social media, and check out our episodes posted weekly on our We Are Brave Together YouTube channel. And now please enjoy our delightful conversation with Dan Habib. Hi everybody. Hi Dan Habib. We have been waiting for this day. It is so good to reconnect in real time. We're so happy to have you. Welcome, welcome, welcome.

SPEAKER_04 2:45

Thank you. I'm really happy to be here. It's a treat to be with you all.

SPEAKER_00 2:48

Yeah, and I want to say that I first became aware of Dan and his work on a Zoom that I was invited to. Was it during COVID? Dan, was it some sort of COVID meeting? And I just remembered being completely riveted by your story, your background as a photojournalist, and then moving into documentary filmmaker, and then establishing like right now films. Um I just felt so connected and drawn to just your work. And so I immediately was like, How can I donate anything or how can I help spread the word about you and your work? And I am, I am just so elated and grateful how wonderful the response has been to you and your work. And of course, um, Samuel's work, right? So maybe for our listeners who don't know about you yet or don't know that much about you, you can tell us a little bit about your story, how you came to be where you are right now in your career, in your life as a father of two sons, as a husband. What's sort of your story?

SPEAKER_04 3:58

I'll do my best to summarize a lot of 26 years in a very short time. You know, it's a it's a pleasure to be with you, Susanna and Jessica, again to see both of you and Dr. Zoe to meet you. It's really it's great to be with you today. Yeah, I, as you mentioned, I was a photojournalist for 20 years. That was my first career and the career I imagined I'd have my whole career. Um, and I loved it. I love doing photojournalism for newspapers and magazines and traveling, but mostly working here where I live in Concord, New Hampshire, where Betsy and I and our kids have lived gosh for 38 years now. As all of you know, when you have a child with a disability, a lot of things change in your life dramatically. When Samu was about two years old, my wife and I were, you know, still dealing with a lot of fear and grief and confusion and sadness and all the emotions. You know, our older son Isaiah is three years older than Samuel, and he was always the one that was ahead of the curve. He was the one that was literally taking his first step and saying his first word at like 10 months.

SPEAKER_03 4:56

Just unbelievable.

SPEAKER_04 4:57

Great athlete, still a great athlete, just really energetic kid. And that was our bar for what parents could be like. And uh, and Samuel was, you know, falling behind on all those measures and and continue to. And it by the time he was about a year old, we knew he was gonna have a lifelong disability. We didn't know what caused his disability, it was and we didn't learn that until age 19, which maybe we'll talk about. But um, but it really changed a lot for us. And Betsy and I just thought, you know, we do not want to live in this place of fear and grief and sadness. You know, it's just not a way we ever want our lives to go forward. And thankfully, she learned about an incredible leadership series, which is part of a national model called Partners in Policy Making. And many of your listeners, at least in the US, will can learn more about this online and in their own states. But she did it and it completely changed her vision for Samuel's future, that there could be a full life. And she started meeting all these incredible disability advocates and role models, and she started coming to terms with their incredible possibilities for his life that we just weren't aware of. And she encouraged me to do the program. She basically said, You have to do the program or we might get divorced, you know, if we were on totally different pages. And so I did the series when Sam was three, and both of us came out of it with this vision that we just wanted Samuel to feel like he belonged. It was all about a sense of belonging, you know, in our family, in our extended family, in our community, in our city of Concord, New Hampshire, and also in our neighborhood schools. Like we could not imagine a scenario in which he felt that sense of belonging if he wasn't welcomed in his own school where all of his friends were going a quarter of a mile from our house. So that that is what led me to start making a film that I at the time I thought was just gonna be like a New Hampshire video about inclusion and inclusive education. And it wasn't even about Samuel at first. I remember one day I came home to Betsy after being one of my one of my friends encouraged me to really focus it on Samuel more sharply. And I said, I think I'm gonna call this Including Samuel. And she was like, whoa, whoa, whoa, whoa, when did this become about our family? You know, it was because she was a more private person than I am. So, long story short, you know, that film became this four-year labor of love that I would do at four or five in the morning and after work. And it wasn't always the best thing for for me and Betsy, to be honest. She called it Planet Dan sometimes. You know, maybe you've been in a place where you get so immersed in something, you block out things that maybe you shouldn't be blocking out, like certain family connections and responsibilities. Anyway, that film came out in 2008 and just kind of blew up by word of mouth and went all over the world and allowed me to change my whole professional career to being a filmmaker just focusing on disability. And I've been doing that full-time since 2008. I left journalism and been doing documentary film.

SPEAKER_01 7:40

What an amazing, amazing journey. And so tell us how how has Sam Mo been part of this now? What's can you explain the leap to us?

SPEAKER_04 7:49

Sure. The first film, as I said, was including Sam Mo. He was four to seven years old. He was very young. So I I mean, to be honest, I'm also very thankful that my family really loves that film because if they didn't, it would have felt very kind of exploitative, you know, that I that I filmed my four to seven-year-old and my seven to ten-year-old kids, you know, with Betsy's support and vetting of the film. And like we all were very involved in the editing. But it still would have been fraught if they hadn't loved it. Thankfully they did, and they love the impact it's had. And for the next, oh gosh, probably um 10 years, I did films that didn't involve Samuel directly that were other topics: kids with emotional behavioral disabilities, kids with intellectual disabilities, young adults transitioning to adulthood. Um, I, you know, I did a lot, a lot of film work that did not involve SAML while he was living his life in middle school and high school. And then there came this moment where we were at his homecoming parade for high school, and I was supporting him. And his principal came over and they started talking to each other. And his principal was using a communication device because he had lost the ability to speak because he had ALS. He had developed ALS. So there was this incredibly powerful moment of Samuel and his principal both speaking with each other, both using communication devices. And I and I photographed it, but I said, Boy, there's like there's a story here that I feel like I need to tell. And so I started making a film about kind of the core of it was their relationship, but it became much more about Mr. Connolly, the principal's vision for education, and how he became so proud of what he'd done to create an inclusive environment that ended up benefiting him as a disabled adult. And Samuel became a story consultant on that film, and we got a chance to start working together. And then, then about a couple years later, maybe a year and a half later, when that film had a lot of success and was broadcast on PBS, Samuel and I started saying, maybe we should do something together. And he really loved the idea of doing a story where he could tell his own story about transitioning to adulthood as a 19-year-old. Uh, and then we filmed for the next three years. You know, I'm sure we'll talk about these new films, but he became a co-director on both My Disability Roadmap and The Ride Ahead. And it was an incredible six-year project that took us a long time to pull off.

SPEAKER_02 9:58

What was the best part about working together and co-creating together? And what was the hardest part, Dan?

SPEAKER_04 10:06

I mean, the best part was we we just had so many adventures together and misadventures, which people will see in the films, like you know, wheelchairs getting destroyed by airlines, which is all through the story, um, seizures in hotel rooms, you know, hours before an interview, uh, you know, some difficult things, but also just some really funny misadventures and and just some incredible moments, you know, together. I think that working at Samuel's pace was very formative for me because Samuel has a communication disorder, he's got movement disorders. You know, I haven't talked about his disability much, but he's got a very rare genetic uh condition called GNA01 neurodevelopmental disorder. Only 300 people in the world have it, and we didn't know he would have it, he had it until he was 19 through genetic testing.

SPEAKER_03 10:52

Wow.

SPEAKER_04 10:53

But it causes a lot of motor issues for him. So I had to really change my pace and style of work to go at his pace, whether it was during the interviews or scripting of the content for the film or travel. And that was very powerful for me. I think that was the one of the best things was just how it impacted it. You know, I think we all develop a lot of patience when our kids have certain differences and disabilities, but it took it to a whole nother level. And that in some ways was also the hardest thing. You know, I had we had to make sure that I wasn't that I was giving making sure he had agency and he had authentic authorship of every part of the film. And it's just it would be very easy for me as this fast-talking New Jersey-born guy to like override a lot of his autonomy and his and his authenticity. And that was very intentional to not do that. So that was challenging. And one of the ways we I think we succeeded at that was not only by making sure he had the time to express himself, but we assembled a majority disabled production and outreach crew. So the majority of our film team are disabled. So everything we did, the animation, the music, the you know, the executive producers, the co-producer, it all was through a disability lens. And I'm not disabled myself. So it's very important that even though I'm very connected as a parent, as you all are, to our kids, I'm not disabled. I don't have that experience. So we wanted to have people with disabilities behind the camera, in front of the camera. And then, of course, all the mentors. I mean, the whole premise of the film is that he decides to reach out for mentorship to seven incredible disabled people around the country to learn about transitioning to adulthood and everything that is involved in education, work, sexuality, dating, housing, transportation, healthcare. And um, and they were such powerful influences on him and on the whole production process. And then his brother Isaiah, who was a very important part of including Samuel, is also one of the one of the key figures in this new film, in both films, My Disability Roadmap, which is the short version, and the ride ahead, which is the longer version.

SPEAKER_01 12:51

That's just such a beautiful story of how your family has come together. But I feel like this is a perfect time for us to share the amazing news that you just got about the film.

SPEAKER_04 13:03

Yeah, we did. Thank you. We the the ride ahead, the feature-length film, which was on PBS last summer on the show POV, was nominated for an Emmy just very recently.

SPEAKER_01 13:14

Oh my goodness, that is so exciting!

SPEAKER_04 13:16

But that was real exciting. Actually, got nominated for two Emmys, one for Best Social Issue Documentary and one for the animation in the film to the animators. So that was really exciting. And we and we have this incredible life moment that I think you guys know about a few years ago in 2023. We were nominated for the short film My Disability Roadmap, which was in the New York Times as an opdoc, and that won the Emmy. So we have already had the very like spine-the-experience of having your name called of an Emmy speak growing up. And I mean, I gotta say, my you know, thankfully, Betsy was there. My wife, Isaiah, couldn't make it that time, he was out of state, to hear Samuel give a speech with his communication device to 700 of the most amazing journalists from all over the world, or country at least, and just like have everyone in wrapped attention listening to him talk about disability justice and Judy Human and what how much she meant to us. The late Judy Human was a big part of the film, and and and thank his mother, which was very important to our family. I mean, he definitely thought it's the that was a non-negotiable from that sequence, if we want. Um, and uh and to have that happen, it was it was like an incredible peak moment. And it's you know, it's it's we don't do it for the accolades, but I gotta say, it's pretty exciting to like get handed an Emmy and to have your son give an Emmy speech. It was really, really powerful.

SPEAKER_02 14:32

Stay with us, Bravies. We'll be right back. There is a moment most caregiving mothers remember with startling clarity. The moment before and the moment after. Before the diagnosis, before the phone call, before the doctor walked into the room. That invisible threshold that divides a life into two distinct halves. And on the other side, a version of yourself you never auditioned for. Doing things you never imagined you could do. You have been suddenly thrust into altered motherhood. Bravies, our second book is here. Suddenly Brave Together, letters to caregiving mothers at a defining moment in their lives, captures the voices of women who lived that pivotal moment written from a place of hard-won wisdom, decades in the making. Imagine 30 decent, savvy, compassionate moms reaching across the universe to share their stories, their transformations, and everything they wished someone had told them. This is not just a book, it is an open door. A reminder that somewhere in this wide world, there is a mother who has already walked the road you are on. And she is holding out her hand for you. Written with new and newer caregiving moms at heart, suddenly Brave Together will validate and inspire every parent caregiver who picks it up. Grab your copy today. The link is in the show notes. Welcome back to Brave Together Podcast. I want to go back to where you said seven mentors. That like hit me in my soul. Because like I have a son who's now about to be 23 and it's it the whole adult sphere of disability is is completely different, as you know, when they're in school. And the thought of Ryan having mentors in the disability space and chef's kiss, that would be amazing.

SPEAKER_04 17:00

Yeah. Well, mentorship, I think we've really realized mentorship is a very proactive process. You know, it doesn't just happen. And this film was a perfect vehicle to make that happen. I mean, Samuel already had a few mentors, especially a couple that I would consider really profound mentors. Keith Jones, who's in the film, has was also in including Samuel. And he's known Samuel since Samuel was about five years old. And and Keith is, you know, in his 50s now, and Samuel's 26. So they've known each other a long time. So he's also a big part of this film, and he's one of the first people Samu wanted to reach out to. And some of the funniest moments of the film are definitely with Keith and Samuel. Um, but Judy Heuman is someone that Samuel has known since his high school years. He did an he did a film about her for a high school project, an interview with her. And she always said it was one of like the her favorite pieces about her was this high school film that Samuel had made. He decided then to start, and he oh, he knew Bob Williams is another really powerful mentor who's used a communication device, who's been a leader in Washington, DC on policy. So that there were a few people that he knew and had some history with, but the rest we just researched. We had 30 or 40 names of people, and we would watch their you know interviews online and their podcasts and read up about them, and he ended up narrowing it down to these seven people. And we also, as filmmakers, wanted to be an incredibly diverse group in terms of you know gender and and uh culture and racial identity and um and geography and disability experiences. So it you know, that was very intentional. And I think you know, Samuel and I have learned as filmmakers, you need to represent the country. You know, you can't just represent our own cisgender white experience. You know, there's a lot more than that out there in the world, and so that was really important as well. So, yes, then we just got on on the road, you know, we went to Washington, went to New York, went to Indianapolis, went to Western Mass, went to different places, did it all through during COVID, did the filming. So we had to stop, obviously, during the worst periods of COVID. We did some interviews online on Zoom, we did more research, finally got vaccinated, went back on the road, you know, and just hiring film crews around the country was a big experience for him. So it was it was a it was an incredible opportunity to teach and learn about filmmaking on a on a different level, but also for Samuel to have this reason to have these multi-hour conversations with these unbelievably powerful, interesting, thoughtful, compassionate, disabled people. And they spoke, they said things to him that they would never say to me, you know, that as a person to person as disability to disability. Judy Human talked about her her sex sex life and her you know attitudes around sexuality. And even our executive producers who were who are the producers of Cripcamp, Jim LeBrecht and Sarah Boulder, they said Judy never talks like that to anybody else. So those are some of the moments that we got because of who Samuel is. Yeah, so I agree, Jessica. It's it's mentorship is so critically important, and and I encourage every parent with uh young disabled adults or of any age to just do what they can to support their connected with mentors.

SPEAKER_00 19:53

Well, I wanted to also share with you too, Dan. I don't think I've updated you now that Arizona is almost 20, but we sat down and we watched my disability roadmap together. Okay. And, you know, she was at, you know, a period in her life where she's like trying to fit in and kind of like doesn't want to be um pointed out, particular special education classes and things like that. And so she she really was grappling with like wanting so much to be like one of the girlies at the high school board, although it's so obviously that she's she's not, right? Um, but not to her. And so she went through this phase where she was like, I don't want, you know, even as I was writing my book, she was like, I don't want you to use my name, and that's why she's known as letter A in the book, and so on and so forth. But when we watched the dis my disability roadmap, I have to tell you that she something shifted within her. She just felt like this innate sort of sense of belonging. Like I can't even tell you, like, even to the point where she was so upset when they're in the where when there was that scene at the airport where some random woman is like talking to Samuel as if he was like a three-year-old. And and you had to redirect her like four times, right? And you're like, nope, nope, nope. And and I and she just felt that in her soul. And so now she has just done done this complete like 180 in terms of like being so proud of who she is in this world and what she can bring to the table. I mean, it's a little bit sometimes a little much. She's like, mommy, I am the hottest autistic girl in the on the planet. I was like, hey, do you do you think so? And I was like, I well, do you think so? That's all that matters, right? And so she is looking and seeking out connection with other disability, you know, disabled adults and young adults, right? And she's so um anyway, so I have to let you know the impact of that on her. uh as a disabled person.

SPEAKER_04 22:01

And I love hearing that. Yeah, I love hearing that so much, Susanna. Really, it means that's those are the stories that make this work worth doing. Seriously. And and it is that's why we do the work. And that is totally affirming. And I'll be honest with you, I don't think Samuel had that a realization along the same lines as you described until he was about the same age. It really wasn't until we started doing the film and he was 19, 20 years old and he started connecting with all these other people who talked so proudly about their disability and talked about the disability community and disability justice and like be part of our community. And Judy Human saying sometimes we as disabled people have to come together before we can go apart, before we can have that individuality. We need to come together and have solidarity. And I and I've come to understand how strong the disability community is beyond anything I ever imagined by doing this film with him. But he he just I mean honestly it's just and I don't think he'd mind me saying this it's just in the last couple of years that he's even thought about like dating other disabled people as wanting and he hasn't he hasn't had a lot of success with dating. He's really struggling with that. But he's now opening up to yeah maybe that shared experience of disability maybe another young woman who uses a young woman who uses a wheelchair would be somebody that can relate to my experience using a wheelchair. So I think the film had a profound impact on him as well just doing it in terms of his own pride.

SPEAKER_01 23:20

Hmm I love that I know as a writer I learn so much when I write and I love documentaries because documentaries allow you to see this lens uh or see an experience through a lens that you never would be able to otherwise and I wonder for you having created these documentaries what did you learn about the disability community in the process yeah I mean my favorite thing of storytelling which I've been doing now about almost 40 years full time is is having the privilege of going to other people's into their lives and really learning their experience.

SPEAKER_04 23:59

And I I think ironically I think what I learned more than anything is as much as I feel such a sense of connection and awareness to disability as a father I still do not have any clue what it's like to live a disabled life. I don't I just don't have that experience and I think as parents we are so incredibly entangled with our kids' lives right in so many ways but we do not live their lives we do not live experience and so I think that's what I learned is like as as close as I can get is it's not my experience and I need to continue to pull put forward people's own experiences in my films and and move myself as far as I can into the background and put their experiences first and foremost by again by let by also putting them in leadership roles on the film like Samuel being a co-director as well as the featured person.

SPEAKER_02 24:54

I love that something Dan that we love to ask when we have parents on the show and it's not often that we have dads so we have a few we have a few good ones for you.

SPEAKER_04 25:02

What do you wish you could tell people right away when they meet Samuel but you're not because you're giving him his space and letting him communicate and share and answer questions or what have you or engage what do you wish people knew and understood right away well I think I think it's all intertwined in the sense that I wish they knew how he communicates and and and he now has gotten more proactive about having a button on his communication device explaining how he communicates because if people and we do this a lot with like medical appointments now and professional appointments where right up front he tells people I have a speech disorder you know I can't it takes me a long time to get the words out. If you don't understand me please ask me to repeat it or have my support person interpret it. I use thumbs up and this is what thumbs up looks like I use thumbs down this is what thumbs down looks like I use my communication device but I need some support. So it's like it lays it all out there and people have been like oh that's really helpful to know we just had an appointment the other day where he did that and they're like that's really great. I appreciate knowing all that so I think that's what I would want people to know is somehow like know right up front that Sam is able to communicate but he's going to need a certain level of space and time and understanding and patience and and are you are you ready to give him that you know or or you just don't have the patience and if you don't have the patience we may not want to spend a lot of time with you. Right totally can you talk a little bit also to about Samuel's roadmap to independence because something happened what like two years ago now in terms of you building your house out about five years ago I mean I you know I did a film uh that came out in 2018 called intelligent lives and one of the people featured in that film Micah Fianca Feldman and his family like to talk about interdependence interdependence that there isn't really independence but there's there's there's going to be interdependence whether you whether your family members are disabled or not I I would hope interdependence is seen in a really positive light that we all count on each other we rely on each other we benefit from each other we sometimes you know challenge each other and each other's patience and everything so but but yes Susanna I mean Samuel is a lot more independent now than he was five years ago and and part of that is just his own emotional maturation and part of that is his ability to communicate more complex thoughts and complex needs. But a lot of it is that yeah he was ready to move out of our house and he really had a goal set for himself that by the age of 21 he would be he would move out. So we did a a big my wife Betsy and I and Samu did a big visioning session and we put a big piece of paper up on the wall and we thought of like all the possibilities and we've been doing something that you may be familiar with called person centered planning for a lot of years with our kids especially Samuel but Isaiah to some extent too. So this was kind of a natural outgrowth of that of let's think about if there were no rules, if there were no restrictions, let's just think about all the possibilities, just put them up all on the wall and see what works. And at first we were thinking that we might try and find you know an apartment for him downtown in Concord which is about three hours three excuse me three miles from our house or we might you know maybe find a small ranch that we could retrofit you know and we're we're fortunate that we have some resources that we can put to this we're not wealthy but we could do something. Then he had a major medical crisis that's actually showed in the right ahead where his baclefin pump died suddenly and that's a very very serious situation where you can go into with withdrawal and it could be critical within 24 hours. So we had to act so fast and it was a real wake-up call that we're just not sure we can manage him being even a few miles away because we had to like and and just a week and a half ago two weeks ago we had to race to the emergency room at two in the morning when he got sick. So this is not a thing of the past it still happens sometimes. So anyway we were fortunate that we have a house in a fairly rural area of the city and we had a plot of land like right next to us that was connected to our garage and we're able to build a small house for him. So he moved into that house it's close it's just through our garage literally but um it has created such a nice level separation between Betsy and I and Sam we can go back and forth and we do whenever we want to or need to but he there there are dates a couple times a week where we might not see him for 24 48 hours which or or more which may not seem like a lot to other parents of 20 something year olds but I think maybe to us you understand like yes yes you're kidding yeah yeah um and and we're thankful in that we have he is eligible for the disability services budget here in New Hampshire as an adult most states around the country once you turn 21 you become eligible for new funding streams if you're eligible for support services and through the funding which is through Medicaid and home and community based services we're able to use that budget to hire direct support professionals to support him during the day and then through another funding stream Medicaid healthcare he's able to have overnight nursing because he does need 247. He really requires 247 support in order to to live so those are systems which we all know are very fragile and fraught especially home and community based services I mean not to get political but just to state the facts with the Medicaid cuts that came down not long ago home and community based services are going to be very seriously threatened. And that's and that is what Sam would depends on for his independence.

SPEAKER_01 30:21

So we're hoping there's a lot of advocacy around the country to fight back on any cuts uh in that regard yes please Dan we have a number of people in our audience who are new to a diagnosis who are in the first few years or early childhood what would you say to them as they are possibly even in a situation with you as you are where you didn't have a diagnosis early on you knew you were just you know treating symptoms right um what advice would you give now 26 years later to people early on in this journey?

SPEAKER_04 30:58

Well there's there's there's so many different parts of the journey right I mean there's the there's the journey of disability culture and identity and understanding that you are now part of a very proud and strong community and as much as it might be very shocking and saddening and frightening and grief inducing those are all real emotions that you will need to feel and and have every right to feel but there's also this incredible opportunity for you to meet as we have these amazing people and to become part of this very strong proud community and and be an active part of it. And you know I I mean Betsy and I say often this has not been the easiest journey to take in parenting but it has made our lives so much better and so much richer and so much deeper. And it's made me a much better person having a significantly disabled son even though it's very difficult at times like that on so many levels physically navigating insurance issues, healthcare issues, you know the crisis of medical care that comes up again and again. So I would say that that's one thing like like know that there's a lot of opportunity here as long as well as a lot of stress and a lot of difficulty find your own mentors find other parents who are navigating this who are a little further along and and sometimes it's helpful to find parents of children with similar diagnoses but I don't think that's the most important thing. I think all of us regardless of what our kids are experiencing in terms of diagnosis are experiencing our kids having medical challenges social challenges educational challenges maybe mobility challenges maybe you know learning challenges and and that's a common experience no matter what your kid's disability is and so I think the most important thing is find people you can talk with openly that you can trust but but in some cases like in ours I do think it's helpful to to also connect with parents with a very specific who have a very specific disability in our case we connected with the international GNA01 community through Facebook through online support groups through international conferences and it's been incredibly exciting and and and very worthwhile to understand like the nuances. I mean I've been messaging with a friend of mine in Australia about the latest experimentation and knowledge around zinc supplementation for kids with our specific disability and all the nuances around that and it's very specific to this disability. So that's just an example of there are some very specific things as well. So you know and I would also just encourage families to not to find a way to understand that no matter what the child's disability or diagnosis was you know a week ago or two weeks from now or a year from now they're the same kid. It's the same kid they are not their diagnosis. You know it's just they are your child and the diagnosis will help inform you. It might help guide some decisions but it does not change who your child is as a as a person.

SPEAKER_01 33:46

Amen to that that's beautiful.

SPEAKER_02 33:49

Being in this new season and we're also in this particularly tough spot Dan where Ryan has been without programming for three and a half months we've settled on something else to try but there's no staffing so here we here we sit. I just the last few days I've just been wondering if my perspective on this whole new season for Ryan what to do with Ryan for Ryan needs to shift. And I just feel like there are things that you're saying that are really touching me. I just feel like there's a shift going on inside of me. And um you know I work because I'm running the Air Brave together it's not something I want to give up or can give up. It's my lifeline. And yet because I work I look at how do we keep Ryan occupied and safe and happy and you know maybe thriving but like I'm not always thinking about the thriving part and like how can we get through each day and that he's you know comfortable with this kind of boring schedule and a little bit of activity. But there are things that you're saying that's that is um hitting me inside about him and what's best for him and not merely covering this time while we wait, but maybe there's something else altogether that I'm missing that's ahead for Ryan. So I I really appreciate this conversation so much.

SPEAKER_04 35:13

Sure. Well no I appreciate that Jessica and you sharing that I I do think I do really think the the act of person centered planning is very powerful because you really do need to build a community around your kids and I'm sure you you have or have tried to do that. But you know Samuel's peers have often come up with ideas or other people in his life that we would not have even ever thought about you know just outside the box thinking and and also some a lot of it is really trying to accept I think your kids' desires for their own future may not be the same as what we project on them. You know and and I listen I struggle with that a lot. I mean I I know in this conversation I've condensed a lot of like big moments you know getting the Emmy and moving to his own house and dah dah dah making the film but there's plenty of weeks where we're not doing a whole lot you know or samuel's not he he's not like going full board every day. You know he may have he might sleep till 11 because he needs that and then he might take some two hours to get up and going with his either direct you know his direct support professional or me sometimes if I'm pinch hitting and then he might have a PT appointment and then he might come home and like chill out listen to an audio book and watch a game at night and that's his day you know and like and that's also a very normal day. And and he needs to pace himself and and some of it is like if that's how he wants to spend his day who am I to say that he shouldn't spend his day that day he's a 26 year old man you know so and then there are days like you know we just went to DC and showed the film at Georgetown uh university a week and a half ago just over a week ago and we had like a really amazing adventure but then he was exhausted for three days and did like nothing you know and I was too by the way but um so I I think that I think that it is also okay sometimes to just meet the basic needs for a while you know and and and know that that's not that's okay right now like that's where you're at that's that and especially when you don't have the support I mean Betsy and I are so thankful for our two full-time direct support professionals right now and and are always fearing the day where we're gonna hear that one of them might have to leave or something because that's yeah really tough. But without the support we would be pretty paralyzed too you know I mean we rely on them and the overnight too like if we didn't have the overnight support. So we're very fortunate but I think you know you do the best you can at every juncture. That's all you can do. And and I think it's also okay for your kids to just be kind of chill for a while. That may be okay with them too to not and then and store that energy up for the moment when they're ready to do something different whatever it is. But they have to decide especially as adults they have to decide what that is you know and Samuel did college for a while and he really liked it and then he kept having these health crises and he said I'm done with college I don't want to do it anymore for for now at least and that's like that was his decision. I really think for and and we we struggle with that with our older son too like he's still trying to find his way in many ways even though he's getting his master's he doesn't know what he wants to do next and we just I need to give him the space to figure it out it's not our life you know it's his life they're adults we can't we can only guide them we've done we've done our job in many ways you know we can't keep doing uh the intensive parenting that we did for so long and it's exhausting for us too and Betsy and I you know we really want to have more autonomy in our lives we don't have the amount the level of autonomy that we have that we would like and our kids know that we're open with Samu about that we want to we want to have more time to ourselves we want to be able to travel more it's really hard it's really really hard and kind of sad that we can't do some of the things we always thought we would be able to do because we are afraid that at any moment Sam could go into a health crisis and it has happened and we've canceled a lot of vacations a lot of trips and that is not his fault at all it's just a reality but it it has been a something that Betsy and I are really working hard to come to terms with that the life that we had hoped we'd be able to have at this point as we kind of get towards more retirement years is not exactly what we thought it could be. Because we're it's a very real reality that we have to be ready to jump on a minute's notice jump into action.

SPEAKER_00 39:06

Thank you for sharing that thank you for sharing that what do you think what can you attribute to your intact marriage because uh Dr. Zilly and I have both gone through divorces and you know I would offer that the majority of my clients are um always on the brink and sometimes it's more expensive to divorce because maintaining two households with all of the expenses. I think our listeners would you know love to hear from you about that.

SPEAKER_04 39:39

We met when we were very young. I was 22 she was 21 we actually met traveling in China just we were both traveling independently and met and uh decided to make a go of it after we got back to the States a few months later and um moved to New Hampshire. Thankfully she made a big move to move to New Hampshire so I think I think there was I mean part of it again like with any relationship there's a certain chemistry and a certain just compatibility you know that that I think we've had since we were quite young. But I also think always trying to keep your sense of humor is incredibly important. That's something we've tried hard to do as we started seeing all the stress that we were facing you know in his early years you know five six seven years old I don't remember when exactly but we saw we just realized we need our communication with each other to be not just good not just solid like outstanding like we need our communication to be exemplary in order to get through this and wow we so we did some counseling that was really helpful and I think one of and and one of the things that I really took from that counseling was when you are starting to feel an emotion of like anger resentment frustration with somebody whatever it is all the things that can blow up into big arguments it's usually more about you than it is about them. It's usually about something that you are feeling it's usually a based on a fear you're having in that moment or a frustration or a sadness it's usually not about the other person. And this one counselor like advised us before you react think about that think count to 10 and think is this really about your partner or is this really about something you're feeling and I I'm not always successful at this at all but I've tried we both have tried to like practice that and I think that has helped us um avoid probably some escalation some some big resentments that you might have with each other and help us express at times and until and even very recently you know we continue to do this like when you when you're starting to feel that coming on saying what you're actually feeling like I'm I'm getting upset but I think it's because I'm feeling like this sadness about us not being able to travel or whatever whatever it is you know that you're feeling so I think learning how to communicate what you're actually experiencing in your mind and body is is is huge. And I think men particularly are fail at that badly um and not to be too gendered about it but I think there's some proof um so I so I worked out of that and I and then I think um I think also like we we've done I think a pretty good job of realizing that we're each doing the best we can you know and it's not always going to be 100% equitable in everything we do. And we and there's a pretty sophisticated division of responsibilities within our lives and we've tried to each do what we're strongest at. So like I'm better with technology and I can do like the physical physically lifting SAML more and like some of the you know some of the educational stuff I jumped into more especially high school years. Betsy was much more involved when he was younger in education I kind of took her in that but she's really great at like navigating Medicaid and Social Security and like all the paperwork and very intense logistics and many other things. She's the family storyteller. I'm the family photographer you know so I think but I think realizing that there are going to be times where you're doing more you're as a as a couple as a partner and the other person's doing less but there's probably a reason for that work might be more intense for them at the moment or they might be going through something emotionally that you're not going through that you're feeling stronger in that moment. So I I just think not blaming the other person and not thinking the other person's always coming up short. There's usually a reason why there's some inequity that sounds great.

SPEAKER_02 43:16

That's a great answer I wish they would tell everybody tell us all at the altar or whatever when we're getting married like remember that most of it is about you before you start to you know shout you messages and blame and project that there's a lot going on with you personally that you need to take care of. Dan is there anything you haven't said about your journey about Samuel about being a documentarian that you would like our listeners to hear?

SPEAKER_04 43:45

So we we've launched these films they're out in the world Samuel in some cool different directions he just did a a a three month long career exploration course that helped him because he's you know he's can we've done the film thing you know he's one of Emmy, he's like, what else? What else are you gonna do? We made two films that we love and that are out there on the world now. And we're actually one cool thing that we're doing is we're getting um we're making the films available to summer camps and programs for free all over the country over the next two years. As part of a grant we got through um the Mitsubishi Electric America Foundation gave us a grant to support a lot of things we're doing, including that. So that's a big initiative we're doing. So we're still getting the film out there in different ways, but he's looking into doing um video blogging on accessibility, accessible adventures around New England. So that's one thing he's doing. He's doing like some work on bird watching, accessibility, and he's he's and he's also just living life and having a good time, you know, going to sporting events and concerts. Oh, and he also works for a concert venue in New Hampshire where he scans tickets and has really fun interactions and all these great shows, like and they get amazing concerts there. Oh my god, he's got that going for the next like six months. I, you know, I was sitting at um the dinner table with Betsy a little over a year ago, and I was like, wow, we finished these films. Like, what do I what do we do next? What do I want to do next? And it's it's hard making a film, you know. You guys have supported the films, you know, we have to raise a lot of money. It it's the production is very intense of making a film, it's really hard to get films distributed these days and the current landscape you know, for a lot of Hollywoodish reasons. And so I said, Boy, that leadership series that we did when Sam was young was so formative. Like, imagine if I could do that on a national level, bring in all these incredible disability rights leaders and disability justice folks that we've met, and just really create this community across the country around disability justice. So that's what I've been doing for the last year is getting ready to launch this program, which is just launching now, the National Disability Leadership Series. And we have 107 people now, 65 of whom are young disabled adults between the ages of 18 and 30, and then some family members and professionals, many of whom also identify as being disabled. And we have a year-long intensive leadership and advocacy training that we're launching.

SPEAKER_03 45:58

Wow.

SPEAKER_04 45:59

And that's and then we're gonna do this annually. So if you haven't signed yet, I know you guys are able to go this year's class, but you're definitely eligible for next year.

SPEAKER_03 46:06

Oh, Susanna next year.

SPEAKER_04 46:09

I'm so excited about it. So we're not actually I'm not taking on any new film projects other than distributing what we already have, but this is my full-time work now is leading this series, and just like with the film work, the majority of our team, the vast majority, are disabled folks who are organizing it.

SPEAKER_02 46:25

Wow, that's exciting. We're definitely gonna jump on that train, aren't we? Well, where can everybody find you, Dan?

SPEAKER_04 46:31

You know, the best place to find information is at likerightnowfilms.com. That's the website. LikeRightNowfilms.com has links to all of our work and a lot and a lot of our work is just free to watch online because we're basically a nonprofit and we really want people to see it. Um but the Ride Ahead website, um, rideaheadfilm.org is really our our big most current project, and that's where you can see our most current work. And we're on social media. Uh on RideAhead has social media on all those different platforms.

SPEAKER_02 47:00

Well, next time you make it to Los Angeles, please let us take you and Betsy and Samuel out, Isaiah. I would love that.

SPEAKER_04 47:06

I would love that so much.

SPEAKER_02 47:08

It'd be wonderful. Thank you so much for being here. Thanks so much for listening today. Do us a favor and leave us a review and a rating so that this podcast can get into the ears and the hearts of more and more moms. Did you know that Brave Together Podcast is an extension of our nonprofit organization, We Are Brave Together? We Are Brave Together serves an international community of caregiving moms, offering support groups that are virtual and in-person, educational resources, and low-cost weekend retreats all over the United States. We've also published two books. Our first anthology of caregiving stories entitled Becoming Brave Together. And our newest release, Suddenly Brave Together. Letters to Caregiving Moms at a defining moment in their lives. Both books offer stories of hope and transformation and encouragement and validation for every parent caregiver. To join us today, go to WeARBravetogether.org. Our support and sisterhood awaits you. Brave Together Podcast is for entertainment and education purposes only. It's not a substitute for professional care and should not be relied on for medical or mental health advice. The use of any content on our podcasts, links, show notes, or on our website is to be done at your own personal risk. Please seek out a professional to assess your own medical or mental health concerns because we are all beautifully complex, and the content of this podcast is for a broad audience.