- [Announcer] Welcome to TPGi's "Real People, Real Stories" podcast, where you'll find interesting and diverse stories from folks working to make the world a more inclusive place.

- Hey, welcome to the "Real People, Real Stories" podcast, brought to you by TPGi. I am your host, Mark Miller, thanking you for helping us keep it accessible. Do us a favor, if you're enjoying "Real People, Real Stories," podcast, share it, tell someone about it. Hey, even link to it from your accessible website. Welcome, thanks for joining us, and I've got a couple great guests that I want to introduce to you all today. First of all is Samuel. Samuel has created a film, right? And the best way I can describe this, these are my words, it's a film that chronicles his journey into adulthood and independence, right? I hope that's an okay way to say it. And then he's joined by film producer, dad, right? Daniel is, Daniel, Dan, Daniel, Dan?

- I go by Dan.

- Dan, okay, as well. So welcome to the podcast. I'd love to start by you guys just introducing yourselves and who you are and a little bit here. So you wanna start, Samuel?

- Hi everyone, my name is Samuel Habib. My pronouns are he and him. I am the co-director of our new film, which is titled, "The Ride Ahead." I work part-time at the Westchester Institute for Human Development, as a multimedia production assistant and presenter. I'm also a college student. Thanks for inviting me.

- You are welcome, and thank you so much for being here, we really, really appreciate it. And I'm so looking forward to digging into the film and your story. But before we do that, Dan, can you tell us a little bit about yourself?

- I'd be happy to, thanks for having us, Mark. I'm Dan Habib, my pronouns are also, he, him. I am proudly Samuel's father, and I am a director, producer, and in this case the co-director with Samuel, of our new film, "The Ride Ahead," as well as our most recent film, "My Disability Roadmap." And we live in Concord, New Hampshire, and I work full-time for the Westchester Institute for Human Development, which supports people with disabilities in the New York region, but we work remotely. And I've been doing film work and journalism for about 35 years, so really excited to be with you today.

- Well, we're excited to have you. And this is really special for me because not only are we sort of in similar industries with similar interests, but we're almost neighbors. You and I guess, Samuel grew up in Concord, and I'm in Exeter, New Hampshire, so about an hour east of you all. So great to have fellow New Hampshirites on the podcast with me. I'd love to dig in here a little bit. So "The Ride Ahead" is really why I was super interested in talking to both of you. You know, and I know this is a film, like I said, that was sort of sparked by Samuel's, your journey into adulthood and independence. Can you tell me a little bit about the film, Samuel?

- Okay, everyone, before you watch "The Ride Ahead," I'd like to give you a bit of background. Since January, 2020, I have been interviewing some awesome adults with disabilities about relationships, work, education, living on their own, healthcare, finding support people, and every part of transitioning to adulthood. We traveled to do interviews and filming in Washington DC, New York City, Indianapolis, and Western Massachusetts. I also filmed my own life from my perspective, with two GoPro cameras mounted on my wheelchair. And my dad has been filming and photographing my life. Okay, hope you enjoy the film and we are excited to talk with you about it afterwards.

- Thank you so much. So Dan, I mean, this sounds like a great father, son relationship where it sounds like your career really came into place to help pull all this together. Is that, I mean, how did it come about in the sense of blending your career with your personal life and your son's professional life at this point, right?

- Sure, and you know, Samuel, I think put the goals and the intention for the film out there really beautifully. But for me, this has been, this is kind of a culminating moment of a 35-year storytelling career. You know, for 20 years I was a photojournalist and never ever occurred to me that we would tell a story about our own family, it just wasn't on my radar. I was telling other people's stories and documenting other people's lives. But when Samuel was just about three years old, a few things happened. He got really sick with pneumonia at one point, and we were up in Dartmouth in the hospital. And when he stabilized, his neurologist actually said to me, have you ever thought of telling your own family story as a journalist, about what it'd be like to live with a child with you know, a disability and a lifelong disability, but also a lot of underlying health issues? So that, combined with my increasing passion for disability rights and inclusive education led me to make our first film when Sam was only four to seven years old, I made, "Including Samuel," and that changed my whole career trajectory.

- Wow.

- Away from photojournalism to filmmaking. And then I did a bunch of films that I'm really proud of, "Intelligent Lives," and "Who Cares About Kelsey?" And "Mr. Connolly Has ALS," which Samuel was a consultant on. But it wasn't 2020, when we started this project that kind of, I made this whole new commitment to saying, Samuel, you know, we could work together, you could be a co-director, you could be the star of the film, and let's make sure the majority of our production and outreach crew are disabled people. So we made a commitment from the beginning that a majority of our team would be disabled people, and we've lived up to that. So we made it, you know, maybe talk more about this later, but we made first the short film, "My Disability Roadmap," which was in "The New York Times" in May, 2022. And we were very fortunate to win an Emmy for that film. And then we just kept on going, right Samuel, to on "The Ride Ahead." And now, so excited to release this film in 2024.

- Oh, that's an amazing story. And I love when families work together like that. Like, you know, I've had opportunities, sort of similar, maybe not quite as extensive with my kids, and it's just a great thing. And the other thing I wanted to let you know, Dan, is that I worked my way through college as a photojournalist, so we got New Hampshire, we got photo journalists, we're just racking up the similarities.

- Well, it's amazing you made money as a photojournalist, it's not easy, you know?

- Really, it was a great college gig. So Samuel, can you tell me how the idea for the film came about?

- I've lived in Concord, New Hampshire my whole life, and the schools here, are pretty inclusive for students with disabilities.

- That's good.

- I was in general education classes all the way through school, and I had a lot of friends and was part of clubs and sports. But things felt confusing after I graduated. I wanted to go to college, date, get a job, live on my own, but no one tells you how to be an adult, let alone an adult with a disability. I suggested an idea to my dad, who is a filmmaker, how about I interview badass adults with disabilities about their transition to adulthood? I decided to start by interviewing people I already knew, like Judy Heumann, Bob Williams, and Keith Jones, because they are people I look up to. They are great advocates and role models for kids and young adults with disabilities. I wanted to ask them, and other people I admired, about their transition to adulthood to help me and others be successful. Success can be defined in many ways. These are just people I wanted to have as mentors. We wanted to focus on people who would be honest and tell it like it is.

- That's fantastic, you know, one of the things, Samuel, that you said in the beginning of that was that you were, I don't remember how you phrased it, but basically mainstreamed, right? It sounds like you were in the same classrooms as everybody else. And my aunt, who lives here in town as well, she was a speech therapist and worked in the Portsmouth school systems. And we were just literally talking last weekend, and she was saying what progress we've made. And one of the big battles in her generation, as an educator, that she went through, was to pull students with disabilities into the mainstream programs. And for her it was, you know, students with, so it makes me feel good that you're talking positively about your experience in high school. 'Cause I think maybe she and her colleagues had a little bit to do with that being possible, back when that was needed. So I really appreciate you sharing that. And I love, the other thing I really like about all this is just the inclusivity that you're expressing here, right? That it wasn't like, hey, I wanna make this film about me, my journey, right? But you recognized that you had certain, you were going through certain things and that you probably weren't alone in that. And that other people had similar, but different stories worth telling. And it just is so fantastic to me that that's how you stepped in, and approached this film. Can you tell me, Samuel, what was some of the most challenging parts of actually creating the film?

- Setting up and getting all of the interviews done was the most challenging part of creating the film. We had a lot of misadventures during our travels. On our flight to Indianapolis, to interview Andrew Peterson, they turned my power wheelchair on its side, both ways, and it got damaged both ways.

- Oh.

- On our trip to DC, to interview Judy Heumann and Bob Williams, we had a six-hour flight delay. And then as we were finally boarding our plane, another passenger talked down to me like I was a 3-year-old. On our New York City trip to interview Keith Jones, and Maysoon Zayid, I had a seizure. But we still got the filming done on all the trips.

- And I gotta say, I take responsibility for the seizure on that trip because there's so many variables when we travel together, right Samuel? So many things can go wrong sometimes beyond our control, like somebody tilting your wheelchair on its side, which drove us bonkers. But one of the seizure meds that you get in the middle of the night, in the hotel room had kind of rolled off the side of the bedside table. And I didn't realize it at midnight when my alarm went off, that I'd missed one of your meds. So of course, at six in the morning you had a seizure. But you know, Samuel actually, I think, may be the only person ever to have had a seizure and then three hours later go on to give an Emmy speech, a Emmy award-winning speech with his communication device. I mean, what a night that was, right, Sam?

- And then well, so with the wheelchair going on its side, was the wheelchair, like put away by somebody and they decided that it was a really good idea to tip it sideways?

- Yeah, oh my gosh, we could talk the rest of the podcast just about travel adventures, but right Samuel? What happened was we always give the folks, the cargo folks who are handling the chair, a lesson on the wheelchair driving and they're well intentioned, they want to get it right. But they, even though I literally had measured the chair, called the airline, made sure it was gonna fit on the flight, they had to put it in the rear compartment entrance because of weight balance. And the rear compartment entrance wasn't as big. So they said they had to turn it on its side, which they should never do. And anyway, there's a whole big issue in the airline industry, as I'm sure you know, with wheelchair travel that we are trying to advocate around.

- I mean, yeah, just stories of airlines, from anybody. But I would imagine, when you start bringing things like wheelchairs and you have all these other, yeah, it's gotta be a mess. I know I was yelled at once for just switching seats because of the load balancing on the plane. So I can imagine with the wheelchair, how that throws everybody off.

- Right.

- Do you know what? You don't let it stop you, right? You just keep going till you make it to your destination. So one of the things I think that's really cool, that we've talked about is the fact that we're, you know, all three of us are from New Hampshire here. So Samuel, can you tell me a little bit about what it was like growing up in the state capital, Concord? You know, a little bit about resources, infrastructure, those sorts of things, you know, where perhaps were maybe some of the gaps in those facilities, you know, for you?

- It was awesome to grow up in Concord. The schools were inclusive and accessible. Concord has done a good job about being more accessible. When I was a kid, I could not get into most restaurants and shops downtown. But since they renovated, I am able to get into most places. There is still work to be done, like the football bleachers at Memorial Field. I am not able to get all the way up in the bleachers with my family and friends. My chair blocks the aisle when I am sitting down in the accessible section. But I still think Concord is a great place to grow up and live as an adult with a disability.

- And the update on that story is that Samuel did go and testify to city council, he's written letters to city council, and the school districts. And because of that, but many other people advocating for more accessibility there, they have plans now, to rebuild the bleachers and make all that more accessible. So Samuel has become a really important and powerful advocate both, in our community and nationally, around accessibility issues and disability rights.

- Well, Samuel, what I love about your attitude is that it's clear that you see the vision of maybe what needs to be improved. But you also see how well it's been done and you're very complimentary of that. And I think sometimes that can be, when you live in a world of frustration, which we all do, you know, it's really easy to lean into the things that frustrate you and have that be the only thing you're talking about. But I really, and I'm sure that the Concord School District too, just really appreciates the way that you recognize what has been done. And it really gives a sense of the journey, that something like accessibility is, you know? You may make improvements but it doesn't mean you're done and it doesn't mean you stop, it makes you continue. And having an advocate like you to help move that along has gotta be fantastic for the city. Makes me feel good, being from New Hampshire, that you're talking so positively about that. So you know, in this podcast, Samuel, you're using your communication device and it's really going well, right? Like it seems smoothly, but I imagine that it could have been a little more frustrating or posed challenges when you were making the film. Can you talk to me about how you, you know, how that went for you, how you tried to capture that on film, those sorts of things?

- I agree that it is really slow and frustrating to use a device, especially because it's gotten harder to move my arms because of my GNAO1 neurodevelopmental disorder, and it is really hard for me to talk. That's why we put the scene in the film where I'm speaking out the words one by one, and my dad is repeating them. Then we show him programming them into the device. I think that shows that it takes a long time to get the words into my device. We also showed Bob slowly typing his words in his scene. We also wanted to show that I communicate better with people that are patient and who talk to me in an age appropriate way.

- And if I could just add to that a little bit, Samuel, to what you were saying. First of all, Bob is Bob Williams, who's a really incredible leader in the disability rights movement. A pioneer who also uses a communication device and is featured in both "My Disability Roadmap" and "The Ride Ahead." But one of the things, Samuel, if I could just help explain that Samuel has a very specific genetic disorder called GNA01 neurodevelopmental disorder, which none of your listeners probably have heard of 'cause there's only about 300 people in the world with that diagnosis at this point, although it's a fairly newly discovered diagnosis that probably will expand a lot. But it's a progressive movement disorder so it's gotten, as Samuel just said, more difficult for him to move his arms. So I want to acknowledge wonderful people, like Samuel's direct support professional, Sophia, who's here with us today. You can poke your head in Sophia, and say hi if you want.

- Hi.

- Hi Sophia.

- And Sophia is one of five direct support professionals, and one of the things they do is help Samuel on employment, in college, and social life. And on an interview like this, you know, in order for Samuel to move efficiently, his arms, he requires some arm support to get his finger to the device, so you'll see Sophia helping with that. So we will all, I just want to acknowledge that the incredible team it takes for Samuel to live the incredible full life he does, it's nothing we could do by ourselves. And we're so appreciative for all the people, educators, you know, college professors, the direct support professionals, nurses, that help you live the life, Samuel, the full life you have.

- Yeah, you think that's, you know, I think that's good, you know, just a good call out. And it's sort of an interesting thing to think about, but we all sort of need that kind of support, right? In one way or another. It's just the support, Samuel, that you have is different than the support that, you know, I might need or somebody else might need. And it's really fantastic that that's available. And it's not just that it's available, but the way that you're using it, right? You could be using it just to kind of get through life, but you're using it to create films like "The Ride Ahead," and "My Disability Roadmap," and you're using it to advocate for disability rights and accessibility and all that kind of stuff. So it's really, really cool.

- And he is even using it to support his kitty, who I keep seeing going in the background, his new cat.

- Oh.

- Which is Harvey Bing, named after Kevin Harvick, and Chandler Bing, two of Samuel's favorite people on Earth. Oh, nice, nice. Yeah, my wife keeps asking us to get a cat, so I'm gonna see if I can hide that part of the podcast from her so she doesn't get jealous. So, you know, we've talked about this a little bit, but this is just an incredible father, son relationship that I'm witnessing here. And you know, Dan, I think that you're super lucky to have such a supportive son hanging around, and you know, doing little things like changing your entire career track for you, you know, all that kind of stuff. So Samuel, I just wanna ask you, can you tell me a little bit about how you collaborate with your father, and other people, to develop the film, and how, you know, how that works? Like how people's work responsibilities were on that film?

- We worked together on most parts of the film. I have the awesome role to do the individual interviews. I composed the questions with my voice and my dad programs them into my communication device. Although we work together as a team, each person involved with the production of this film has their strengths that we try to highlight in different ways. I have enjoyed being able to work with my dad so closely on something we are both very passionate about.

- And you know, one of the things, Samuel, that people, with any film, don't know is all the behind the scenes work that goes into making a film, and the team it takes to make a film. So for example, before we would go to do an interview with Keith Jones or Maysoon Zayid or Judy Heumann, or any of the seven people that we interviewed, that Samuel interviewed, Samuel would spend many, many hours dictating out the questions slowly, through your voice, Samuel. And then as he said, I would type them in. And, you know, for the sake of efficiency today, where we have it all preprogrammed and ready to go on your device, but the way that Samuel generates that content is by very methodically and with a lot of effort, speaking out his thoughts. And that's how you do your schoolwork, Samuel, for college. That's why you're now, two thirds of the way through to your associate's degree, and graduated high school with a regular diploma. I have to, you know, trumpet some accomplishments for you.

- Of course you do.

- Because you're my son and because you've done a lot. But it's through, like I just always say, Samuel is the most persistent and positive and resilient person I've ever met in my life, and that's how we made this film. It took us four years of nonstop work and through a huge amount of effort on Samuel's part.

- Wow, proud dad, you guys are lucky to have each other. It's just an incredible dynamic duo that I'm seeing here. I love the way that you really support each other, you know, and it's incredible. So let's get back to the film a little bit, Samuel, can you tell me, so if I have this correct, "The Ride Ahead" is coming out soon, right? It's coming out in 2024. What's the exact release date of it?

- So I can speak to that, so we are recording this in mid-April, and in just a week we are heading to Toronto for the world premiere at the Hot Docs Film Festival. And then we'll be in Boston on May 5th, for Independent Film Festival, Boston. And then they're showing it in Seattle in mid-May. And then we continue to do festivals and events and eventually streaming and broadcast for the next two years. It's not a sprint, it's a marathon, it's like a two-year and beyond. I mean, including, Samuel's still in heavy distribution, boy, like 15 years later. So we expect this film to have a long life, but it's rolling out very soon.

- Great, great, and make sure we, you know, we get all those dates so we can put 'em-

- Sure.

- With a podcast so if the listeners can, I know, Boston will be the one that I'm gonna get to. But what I wanted to just find out from you, Samuel, is what, you know, with this release coming up really soon, right? What are your hopes and dreams for the film?

- My goal for the film is that people won't talk down to disabled people. I want everyone to know that disabled people demand respect and rights. And I want other young adults with disabilities to have the same opportunities that I've had for healthcare, inclusive education, college, assistive technology, jobs, making friends, advocacy, and independent living. I hope parents who will watch this film, will see that they should include their kids in everything, like my family has done. And I hope schools and colleges who watch this film will commit to include disabled students alongside their non-disabled peers. All of my schools have been inclusive and that made a big impact on my education and led to my life now, as a film maker. Our film will let people learn from disability role models like Judy Heumann, and Bob Williams about how to live a with a disability as they transition to adulthood. This film will help people understand how to talk to me, and other people with communication challenges. Be patient and do not talk down to me, ask me how I best communicate. Slow down the pace of the conversation to create more space for me to contribute. If you don't understand me, ask me to repeat what I said. If I'm typing on my device don't start another conversation, please wait for me to finish. Young people with disabilities who have seen the film so far have told me that they have the same questions as I do about dating, sex, moving out of their own family's home, how to respond when people talk down to them, work, and college, that means a lot to me.

- I'll just say that Samuel said it all so perfectly, I don't need to say anymore other than, you know, one piece of context I think, relating to this podcast, which is a lot about technology and accessibility, Keith Jones, in the film, says something that I'm gonna paraphrase, but it's basically a disability is just a gap between abilities, the person's abilities and the environment in which they're expected to function, right? A person's disabilities, and the environment in which they're expected to function. Technology can play a tremendous role in that gap in people giving access to transportation, communication, work, college, relationships, dating, healthcare, I mean everything.

- Yeah.

- Can in part, be bridged through technology so that's why we're such, as you're seeing today, with Samuel's device, and his wheelchair, and his accessible home, and the accessible van he's gonna be getting into in just a little bit. We're fortunate to have those things, but we want that for every person with a disability, to have the technology and the adaptive equipment they need to function in society and flourish.

- Yeah, that's a really good point and that saying is one that I've heard float around and one that we say, 'cause I think we are living in a world where technology is enabling everybody to do more, and that includes people with disabilities. If we respect that connection between the technology and the environment, you know, that's where our business comes into it, is that you can, there's technology out there so that a person who's blind, for example, can perceive the same content on the website that all of us can, unless you don't program the site correctly to work with that device. And so it's just another thing as you're using something like that to communicate to the world, you have to consider everyone. One of the things-

- Hey Mark, can I just add something real quick there, I'm sorry to interrupt. One of the things we're doing with this film is every piece of our website, every piece of material we put out there, all of our social media, everything is designed from the beginning for full accessibility, all descriptions, the website's being built for screen readers. All of our premier screenings are gonna have open captions, audio description, and in most cases, American sign language interpreters there. So we're trying to live what we preach, you know? And everything we do is designed to be accessible.

- That's fantastic, and I wouldn't have guessed any differently, right? Couple things, Samuel, that kind of jumped out me, there's a saying that I always go back to, that kind of came into my mind as you were talking, and that's nothing about us, without us. And I think that that's the, you know, one of the things that seems to me, that you're really trying to communicate with this film, is include, you know? There's a tendency to put somebody with a disability off to the side because you don't know how to interact with that person or whatever it may be. And it sounds to me like your messaging is, hey, just include us and it'll be okay, you know? Work with us. I'm assuming that that hand raise is, means I got it right. And I really appreciate that 'cause I think that that's a message that really needs to get out there. And again, I am just so impressed with how, you know, how inclusive the film really is. You know, how you guys, how the both of you, Samuel and Dan, set out to create something that is not about you, includes you, includes your experience, but really is about people with disabilities, disability rights, and just the human, it sounds like it's just the human aspect of all of this, right?

- And to add on that Mark, I mean, it's not just about disability, but it's really about intersectionality of people with disabilities, who also have different cultural backgrounds, different religious backgrounds, different sexual orientations, different gender identities, different races, different socioeconomics. All those things are represented in this film and we were very intentional-

- Incredible.

- To create that huge array of disability and diversity through Samuel's research and through who Samuel chose to interview. So I just wanna make sure people understand that we understand the importance of intersectionality in this discussion as well.

- Well, it's gotta make every message that you're trying to get across in the film just that much more powerful, by including that, you know, level of diversity in those different voices and experiences and situations and all that. And I have to think, I mean, just for the listeners, like, you know, Samuel will talk, you talk a lot about your friends and I'm imagining your group of friends, and it's probably a very diverse group of friends that includes people with all different types of disabilities and people without disabilities as well. And you know, that just goes to show that if you do take a little bit of time to get to know somebody, to respect the way that they communicate or operate otherwise in this world that you never know, you know? Who you might end up being friends with.

- What do you think of that, Samuel? Is that affirmative?

- He's like, "I don't know, this guy talks too much."

- No, I see the big smile, for those of you who can see the video.

- Great, beautiful, so any last words, Dan? This was really fantastic and I know you guys are on a tight time schedule so and we've gotta wrap the podcast up anyways, but I'd love to hear if there's any last, lasting comments that you wanna make sure people are left with?

- Well, before Samuel says a final thank you and goodbye, I just wanna say, people always say, well, where can I see the film and when can we see the films? The best way is like, you can imagine, follow us on social media. And so we have pages set up for "The Ride Ahead" on Facebook, "The Ride Ahead" on Instagram, and actually "The Ride Ahead" film on Instagram, and "The Ride Ahead" on X or Twitter, whatever you wanna call it these days. And then, and Samuel's also @SamHabibfilms, and I'm @DanHabibfilms, on Instagram. I think you'll be able to hopefully, put these links out. But that's the way we can share news about the film, where we're gonna be around the country 'cause we want this to be a real tool for organizing, for activism, for disability justice. And we want people to use the film, like they have our previous films, to do good in the world. That's the, but Samuel, do you have any final words you wanted to say? The final thank you?

- It was great to be with you today. Thanks so much for your questions. We'll keep you posted on "The Ride Ahead."

- Wonderful, well, thank you Samuel, you Dan, I really, really appreciate your time. What a great conversation. I hope to see you in Boston for the film and maybe just kicking around New Hampshire, we'll run into each other too.

- That'd be great, we'd love to see you in Boston for our May 5th screening, and in New Hampshire.

- Great.

- Thank you so much, Mark.

- Thank you, this is Mark Miller, thanking Dan and Samuel, and reminding you all to keep it accessible.

- [Announcer] This podcast has been brought to you by TPGi, the experts in digital accessibility. Stay tuned for more "Real People, Real Stories" podcasts coming soon.