Samuel Habib's 'My Disability Roadmap'

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.  

SAMUEL HABIB: My goal for the film is that people won't talk down to people with disabilities. I want everyone to know that people with disabilities demand respect and rights. I want people to learn from disability role models like Judy Heumann and Bob Williams. 

PACHECO: Today, the father/son duo, Dan and Samuel Habib on their new documentary, “My Disability Roadmap”.  

DAN HABIB: Some days you're ready to be an advocate and ready to take on the world. And some days you just want to like, go to the airport and get on your plane, you know, and not have to deal with condescending people, or people that patronize Samuel. Just like the experience of women, or the experience of people of color, or the experience of the LGBTIQ community. 

PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!  

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco.  

PACHECO: The transition from adolescence to adulthood can be a challenging time for many people, and for people with significant disabilities, that transition can have even more obstacles and unknowns. For many, the end of high school marks a turning point when young adults with disabilities lose supports they received as a child, and often are faced with blazing paths for themselves in uncharted waters. This, combined with the social pressures of becoming an adult, is the subject of the new short documentary, “My Disability Roadmap,” co-directed by our guests, Samuel and Dan Habib.  

In the film, which was released as a New York Times Op Doc in May, Samuel brings us on his journey of going to his high school prom, starting college, and wanting to date, as well as meeting legendary disability rights activists along the way. Samuel’s father, longtime photo journalist turned documentarian, Dan Habib features prominently in the film, supporting Samuel on this journey.  

Samuel and Dan join us on the show today, but before we welcome them, I want to play the trailer for “My Disability Roadmap”. And our radio and podcast listeners will benefit from the fact that the film is fully audio described for people who are blind or low-vision. So here’s the trailer for “My Disability Roadmap”.  

AUDIO DESCRIPTION VOICE OVER: Unified Sports basketball game, 2017.  

[crowd chatter] 

GAME ANNOUNCER: Number 93, Slammin’ Samuel Haaaaaabiiiib! 

[crowd cheers] 

SAMUEL HABIB: My name is Samuel Habib.  

AUDIO DESCRIPTION: He takes to the court.  

SAMUEL HABIB: I live in Concord New Hampshire. 

AUDIO DESCRIPTION:  Samuel passes the ball. 

SAMUEL HABIB: I've been in regular school and classes since preschool. 

AUDIO DESCRIPTION: Teams line up for post-game high fives. 

SAMUEL HABIB: In my senior year of high school I asked my friend Anita to go to the prom with me. She said yes, and then I had a seizure. Damn. 

AUDIO DESCRIPTION:  Samuel and Anita in prom attire. 

SAMUEL HABIB: But we did go to the prom together and we had an awesome time. 

AUDIO DESCRIPTION: Enthusiastic campers on stage. 

SAMUEL HABIB: I like hanging out with my friends and going on adventures. 

MALE CLASSMATE: Yeah Sam!   

AUDIO Description: On a zipline, then a roller coaster. 

SAMUEL HABIB: And I'm a speed freak. 

AUDIO DESCRIPTION: Down a snowy hill in a sit ski, his partner standing behind him. 

SAMUEL HABIB: I am in my third year at the local community college. I really want to start dating. I set up a profile on Bumble and Hinge. It's really hard to meet new people when I can't drive in my friend's cars, or get into their houses. 

AUDIO DESCRIPTION: Out for a stroll. 

SAMUEL HABIB: Someday I want to get married and maybe have kids, but I need to figure out how to do all the things I want to do.   

SIGMOND: So that was the trailer for My Disability Roadmap, a short documentary co-directed by our guests the father/son duo Dan and Samuel Habib. We welcome you both to Disability Rap. Samuel, I want to begin with you. Can you tell us more about the film? How did it come to be?  

SAMUEL HABIB: Since January 2020 I've been interviewing some awesome adults with disabilities about relationships, work, education, living on their own, health care, finding support people, and every part of transitioning to adulthood. Before COVID we traveled to do interviews and filming in Washington D.C. We traveled to Indianapolis, and New York City to film. 

I filmed my own life from my perspective with two GoPro cameras mounted on my wheelchair, and my dad filmed and photographed my life. The working title of the film is “My Disability Roadmap”. A short version of the film premiered on the New York Times website in May of 2022. We are currently in production of the feature length film. 

PACHECO: Thanks Samuel. I want to play another short clip from the film. This is you interviewing the legendary disability rights activist, Judy Heumann. 

AUDIO DESCRIPTION: Heading into an art deco apartment building. 

DAN HABIB: Hello! 

JUDY HEUMANN: Hello!  

DAN HABIB: Oh my gosh, long awaited.  

HEUMANN: I know Samuel, I can't believe it.  

SAMUEL HABIB: I am so psyched to finally meet you in person. 

HEUMANN: It's nice to finally see you. 

DAN HABIB:  Oh my God [sound trails off] 

SAMUEL HABIB: Judy Heumann is one of the greatest disability rights advocates of all time. She spent decades fighting for civil rights for disabled people. She's a revolutionary. 

AUDIO DESCRIPTION: Looking up from his device Samuel grins. 

SAMUEL HABIB: I am currently working with my dad on a new film project. I'm asking each person about relationships, work, education, and every part of living a full life with a disability.  

AUDIO DESCRIPTION: Dan straightens Samuel's head. Samuel Taps his device screen with his finger. 

SAMUEL HABIB: What did the teachers and principals expect of you during your school years, and what did they expect you would do as an adult? 

HEUMANN: I don't really recall people seriously asking me, “What do you want to be when you grow up?” And I mean honestly, I don't think I ever really felt comfortable and confident in any of my classes. 

SIGMOND:  Samuel, you interview several big name people in the disability rights movement. The mentors you interview give powerful advice. Is there one piece of advice that you’ve taken most to heart? 

SAMUEL HABIB: The advice I got from one of my mentors, Maysoon Zayid, was: you are not alone, find your community. That was powerful advice, because I have always had a strong community starting with Beaver Meadow Elementary School. I am continuing to find my community at NHTI Community College, in the disability rights community, at work at the Westchester Institute for Human Development, and in my hometown of Concord.  

PACHECO: So Dan, I'm going to switch over to you quickly, and if I understand it your first film, “Including Samuel” focused on your family's efforts really working to make sure Samuel was included in all aspects of life. That film was broadcast nationally on Public Television in 2008. What was different about this experience, making the film with Samuel this time around?  

DAN HABIB: Well so much was different. First of all, it's more fun this time around, doing it with Samuel, not having it all on my shoulders like the first time, right Samuel? You know, that that was really a story when Sam was much younger. He was between the ages of about four and seven during that filming. And it was it was my perspective as a parent. But I think what I've come to understand is, as much as I know Samuel really well, and I've learned a lot about disability and disability rights as a parent. I'm not a person with disability. So I can't tell the story of what it's like to be a person with a disability, as much as I can provide a platform for people like Samuel, and Judy Heumann, and Ali Stroker and Maysoon, and Keith, and all these wonderful people in the film to share their own perspectives. Their own first person perspectives on living their lives with a disability.  

So I think that's a really important thing that's happening in society in general, is that people are being- the space is being created more and more for people to share their own stories from their own lived perspective. And not have people don't experience that perspective telling that story for them. So that's probably the biggest thing about this film. This is Samuel's point of view, and the points of view of the people that he interviews. It's not my point of view.  

PACHECO: We're gonna play one more clip from “My Disability Roadmap”. 

AUDIO DESCRIPTION: Samuel and family dance in the yard, run on the beach with a service dog Proton. 

SAMUEL HABIB: My extended family is fun. They accept me as a person. They include me. 

[Music plays in the background]  

SAMUEL HABIB: They understand me. They have high expectations for me. That's why it's so frustrating to meet people who just don't get it. 

AUDIO DESCRIPTION: At the airport someone skitters awkwardly out of Samuel's way. 

DAN HABIB: Samuel's doing documentary film work and   

FEMALE VOICE [baby talk]: You are such a cutie. How'd you get so cute, huh? 

AUDIO DESCRIPTION: His smile vanishes. 

DAN HABIB: You're kind of talking to him like it's a five-year-old, but he's a 20 year old college student. 

FEMALE VOICE: Okay so how old are you now? 

DAN HABIB: So just, you know, you can talk to him like you would any other 20 year old college student. 

FEMALE VOICE: How old are you? Are you 20?  

AUDIO DESCRIPTION: He gazes up to her, then sighs, eyes wandering. 

FEMALE VOICE: You don't know me. my name's Jo, and I've been talking with your dad. 

DAN HABIB: Yeah so, Samuel shuts down a little bit when he feels like he's being talked down to,  

FEMALE VOICE: I’m sure. 

DAN HABIB: And I feel like you're just talking down a little bit.  

FEMALE VOICE: I don’t mean to.  

DAN HABIB: Yeah, like just he's a 20 year old college student and I don't 

FEMALE VOICE: Where do you go, [high pitched] are you in school now hey? 

DAN HABIB: No.  

SIGMOND: So that was another clip from “My Disability Roadmap”, and Samuel, a couple minutes after that clip, you show a clip of when you got to ask then candidate Biden a question, and I must say, as someone with a physical disability, that interaction was hard to watch, and I encourage people to go online and watch the film to see what happened. But about dealing with condescending people, have you adopted any particular strategies? What is that like for you?   

SAMUEL HABIB: I want to curse at people who talk down to me like Jo, the woman at the airport in the film. But I did not because I'm afraid that people would get mad at me. Next time I will say, talk to me like I'm an adult. I am learning a lot from people with disabilities that it's not easy to be an adult with a disability. But I'm learning from them how to be a better disability rights advocate. I'm learning to be a better advocate for my life and for other people with disabilities. 

PACHECO: Thanks Samuel. Yeah I think that those interactions are always really hard. We've had a Board Chair of our organization get patted on the head by a mayor when trying to advocate for folks with disabilities. So it does seem to be pervasive. And I just really appreciate, you know, how often that must happen. So I have another question for you. How are your support services arranged and paid for? Is there more that support service agencies could do to help disabled youth and young adults kind of with the social side of life? 

SAMUEL HABIB: I think that support agencies could do more to help young adults like me get out there and maybe meet a girlfriend. Community Bridges helps me with a lot of aspects of my life, but there are currently no programs to help with my social life. My DSPs help me with my social life. I think it would help disabled youth to have planned contact with other young adults with disabilities. I think a disabled student's club would be helpful so kids can have an opportunity to talk to others like them. I don't think disabled youth would resist. I would like to be in a club with other people with disabilities. 

SIGMOND:  Thank you. Dan, I’m just wondering what it’s like for you to witness these interactions when people talk down to Samuel. On one level, I could imagine you are used to it by now, unfortunately, and in the film it was so great to see you being such a good ally to your son. But, what is it like for you on a personal level? 

DAN HABIB: Well first of all, I definitely want Samuel to be in a position to speak up for himself, right? And I mean, I'm happy to advocate, and that's part of your job as a parent, I think. But I would much prefer that Sam will speak out and I think it's more powerful when he speaks up for himself. So I know Samuel and his direct support professionals have talked a lot about maybe how to respond in a situation like that. They've had some fun programming a page with lots of colorful language about all the things you could say if you wanted to when someone talks down to you, or strokes you on the face, like, well, we won't get into that because you have to see the film for that moment.  

But, you know, my wife and I have long said, like some days you're ready to be an advocate and ready to take on the world, and sometimes you just want to like go to the airport and get on your plane, you know. And not have to deal with condescending people, or people that patronize Samuel. Just like the experience of women, or the experience of people of color, or the experience of the LGBTQ community. You know, when you're in the minority in any sense and when you're a marginalized group, you're often put in a position of having to defend your identity, defend your choices defend your personhood, and it's exhausting. And so I think Samuel and I through our film work, through our advocacy, through some of the people in the film, through their advocacy, they're trying to change the world so that we don't have to advocate quite so often. And don't have to run into ableism as often as we do.  

And in some ways we're still really privileged. We're white, we're economically secure, you know. So I think a lot of people with disabilities, people of color, people who don't have the economic security, have double and triple marginalization. So even though disability still is difficult, sometimes we feel also privileged in some ways. 

PACHECO: So Samuel, I have one more question for you. What are  you really hoping – what are your hopes and dreams for this film? What do you want to come out of this this work that you've been doing?  

SAMUEL HABIB: My goal for the film is that people won't talk down to people with disabilities. I want everyone to know that people with disabilities demand respect and rights. And I want other young adults with disabilities to have the same opportunities that I have had for health care, inclusive education, college, assistive technology, jobs, making friends, and independent living. I want people to learn from disability role models like Judy Heumann and Bob Williams. I want to help people learn how to live a full life with a disability as they transition to an adult by focusing on all the possibilities of relationships, work, education, and disability rights.  

SIGMOND: So Dan, parental advocacy can take many forms. What advice do you have for other parents of people with disabilities to really support their child in independent living and achieving their own dreams? 

DAN HABIB: Well anybody that knows kind of the work that we've been doing for the last 15 years knows we’re big advocates for inclusion, and inclusive education. And I like to make sure everyone understands and knows that all the research we have in society for literally the last 40 years supports students with disabilities being included in regular classrooms. And the data shows that students with disabilities who have the opportunities being included in regular schools and regular classrooms alongside typical peers end up with better communication skills, better behavioral skills, better post-secondary outcomes in terms of employment, college, independent living.  

And so Samuel, you know we're very proud of Sam on all the hard work he's done to be where he is now in college, and high school graduate and working and making money. But he's representative of the research that we have. And I've always asked audiences, you know, show me a single study that shows that self-contained or segregated placements result in any of those outcomes being better. And no one's ever shown me a study. So I think that's the biggest advice I can give is work hard, push hard, advocate for inclusive education for your own kids, for your family, for your community, for your extended family, you know? And there are a lot of families that unfortunately don't have that meaningful option, and that's not their fault at all, it's a structural problem. I do, you know Samuel I think has also some really good advice he's thought about, based on all the interviews he's done with the mentors. So maybe Samuel, would you mind sharing some advice you've gathered through this documentary process?

SAMUEL HABIB: My advice to children, teens, and young adults with disabilities is to find your community. One of my mentors, Maysoon Zayid, told me this. My advice to parents of children, teens, and young adults with disabilities is to include them in everything, like my family has done. My advice for schools and colleges is to be inclusive. All of my schools have been inclusive and that made a big impact on my education. My advice to disability organizations is to find new things to help people with disabilities, especially for employment.  

DAN HABIB: So you can see. Samuel are on the same page, but I always think it's more powerful coming from Samuel, sometimes than it is for me. If I could just, if you don't mind, I think Samuel might also be able to speak a little bit to - a lot of people see the airport scene in the film, and they said, well can you then tell us how we should communicate better with people with disabilities? And you know, you can debate whether that's really our role or not, to take that position, to kind of. But I think we're hopeful that the film will help illuminate approaches to communication that are more effective than a couple of the examples we highlight in the film. Because there are so many positive examples in the film too, of respect and communication. So Sam, I don't know if you want to talk a little bit about the fact that you do communicate in a non-traditional way, and I know you get frustrated sometimes, but maybe a few tips for the audience on how other people might communicate with you, and other people with disabilities. 

SAMUEL HABIB: Be patient and do not talk down to me. Ask me how I best communicate. Slow down the way you talk, create more space for me to contribute to the conversation. If you do not understand me ask me to repeat what I said. If I am typing in my device, do not start another conversation, please wait for me to finish. 

DAN HABIB: That's right. And when you said, “slow down the way you talk” I know you didn't mean like, [he draws out his words slowly] slow.. down… like… this,  you mean just make conversations a little less frantic, you know? I know we grew up in a Jewish family from New Jersey, and we all talk really fast and we have these really busy conversations, which can be fun, but it doesn't create a lot of space for someone like Samuel to interject your thoughts. So we've tried as a family to learn to just create more space in the conversation for Samuel, and other people to chime in. 

PACHECO: I love that advice and I think that's that could really universally help so many people, with disabilities and without disabilities. I can identify with that. I'm not a person that interjects into a conversation very well, so if there's a little bit more space even for me that super is helpful.  

And I just want to add I really appreciate the conversation that we've had around both inclusion being so critical, but also Samuel your sort of advice that we also need to provide disability only spaces for connection of peers to come together. And so my previous career I was a special education teacher, and I worked in middle and high school, really moving programs from segregation to inclusion. And I did not really understand how critical the need is for disability only spaces until I started my work at FREED. And really heard that loud and clear from the disability community, and saw the benefit. So I think that both of those pieces are so necessary for a healthy existence and a full life. So I appreciate sharing both sides of that coin. 

DAN HABIB: Yeah I agree. And I'll just say that, you know, one of our executive producers is, or the two executive producers, are Jim LeBrecht and Sarah Boulder, who created the movie ‘Crip Camp”.  And Judy Heumann. many people know was in the movie “Crip Camp”, which is an incredible movie. And that movie is all about that, right? It's about create a space where people could come together and totally be themselves. And so we, I think that's been a real influence on our film, kind of seeing that film as well. 

PACHECO: Another great piece of advice for our audience. If you have not seen “Crip Camp” it is still on Netflix. Check it out, it's well worth a watch for sure. 

SIGMOND: And you have a feature coming out. Do you want to tell us a little about that? 

DAN HABIB: We actually from the very beginning planned this project as a feature-length documentary. So that's like an hour to 90 minute documentary. And we never really planned actually to have a short be like at the New York Times Op Doc series. But they saw an early what we call a “sizzle reel”, which is like a 15-minute extended trailer or teaser. And they really liked it, and they helped us develop that into the Op Doc short. So we were so grateful that it was in the New York Times, and it reached millions of people that way.  

But now we're taking all this incredible footage we have - you know, Samuel interviewed Judy Heumann for three hours, and Bob Williams for three hours, and Keith Jones, right Samuel, for three hours. So we have these amazing amounts of material. So rather than have just 90 seconds or so of interaction, we're going to be able to expand those to six to eight minutes of more depth. And we're gonna be able to also have more archival material from their own transition years, their videos and pictures from when they were transitioning to adulthood. We're even going to animate some of the stories they tell about their childhood, which is going to be really cool.  

And then we also have so much footage of Samuel's life that people have not seen, and that continues, we're filming this afternoon in fact. You know so, there's a lot of filming that continues to this current day. So when the film is finished, and we expect a public television release, hoping on that in 2024. It'll just have a lot more depth. We'll be able to go into much more detail on a lot of the themes, and we think it's going to be a really - we hope - powerful educational and public awareness tool. And that's why we do the work we do, to change lives, change minds, change hearts and minds. That's what we're trying to do, right Samuel? 

PACHECO: That was Dan Habib, Co-Director of the new documentary, “My Disability Roadmap,” along with his son, Samuel. You can find out more about the film and their upcoming speaking tour and webinar series at mydisabilityroadmap.com. 

And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. Courtney Williams is our Production Assistant. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap. 

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