“My Disability Roadmap” Sparks Conversations About Inclusivity

In a recent Emmy-winning short film, a young man, a self-proclaimed “speed freak,” ziplines through the trees, braves a thrilling roller-coaster ride, and races down a ski slope.

But Samuel Habib is not a typical young man. “I wanted to go to college,” he writes, “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.”

Samuel lives with a rare condition known as GNAO1 Neurodevelopmental Disorder, which caused his cerebral palsy, epilepsy, and speech disorder. He has a 350-pound power wheelchair, a mounted communication device for ready access, and the unwavering commitment and determination of his parents. He lives in New Hampshire and attends community college.

Samuel’s father, Dan Habib, a former photojournalist, had done some stories on people with disabilities, “but never was it on my radar in any profound or personal way,” he says, “until we realized Samuel had a disability a little less than a year into his life… and that changed everything.”

Now a filmmaker, Dan works remotely for the Westchester Institute for Human Development (WIHD) from his home in New Hampshire. The father and son decided to document Samuel’s journey to adulthood with two GoPro cameras mounted to Samuel’s communication device, one facing him and one facing the world in front of him. The film became My Disability Roadmap, in partnership with The New York Times as a New York Times Op-Doc.

My Disability Roadmap profiles Samuel overcoming airplane travel, seizures, and the indignity of being treated like a child as he travels the country asking for guidance.

“There are badass people with disabilities who figured it out. Maybe they could be my mentors,” he says in the film. Among those Samuel meets are Americans with Disabilities Act pioneers Judy Heumann and Bob Williams; Tony-winning wheelchair-using actor Ali Stroker; hip-hop artist Keith Jones; autistic, queer activist Lydia X.Z. Brown; and Andrew Peterson, marathon runner and disability activist.

Last year, My Disability Roadmap won the Emmy Award, beating out 60 Minutes and Nightline in the category, Outstanding Soft Feature Story – Long Form. The lead cast on this project — and most of the production and outreach crew — are people with disabilities.

Before Samuel came to the stage to accept the award, the audience saw a clip from the film. We see Samuel in his wheelchair asking then-Presidential-candidate Joe Biden how he will support more inclusive education for people with disabilities. Biden tells Samuel, “Your disability does not define who you are,” while gently caressing Samuel’s face. We hear Samuel in his voice-over say, “I can’t believe he stroked my face. Weird!” The audience laughs.

Samuel, now 24, a charming guy with a winning smile, accepted the award with his father, Dan, holding the microphone as he spoke in a mechanical tone through his pre-programmed device.

Referring to Biden, and others in the film that he felt belittled him, “My goal for this 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.” Further, he says, “I want other young adults with disabilities to have the same opportunities that I have had for healthcare, inclusive education, college, assistive technology, making friends, and independent living.”

WIHD, located on the same Valhalla campus as Westchester Medical Center and New York Medical College, delivers medical, clinical, and support services to disabled individuals and their families, and provided support for the film. “We are committed to providing the best possible care to people with disabilities and vulnerable children and their families,” says WIHD President and CEO Susan Fox, “and the film really helps us promote our work in advocacy, research, and paving the way for a more inclusive and just world.”

As the Inclusive Communities Project Director at WIHD, which uses documentary film to promote acceptance and inclusion of people with disabilities, Dan teams up with WIHD staff on various fundraising efforts, and the Inclusive Communities Project receives grants from the Taft Foundation and Think College. To prepare for filming, Dan and Samuel spent hours programming Samuel’s questions into his speaking device. They, then, travel around the country asking disability-rights leaders how they navigate relationships, sex, education, work, and every part of living a full life with a disability. They advise Samuel to, among other things, find his community and ignore anyone who refuses to accept him.

“Such a profound and painful experience in his life is being talked down by people, and they assume they can’t, for some reason, talk to him in just the normal age-appropriate way.”
— Dan Habib
Westchester Institute for Human Development

“Such a profound and painful experience in his life is being talked down by people,” says Dan, “and they assume they can’t, for some reason, talk to him in just the normal age-appropriate way, [and] he wants to get rolling on this relationship and sex thing. He’s 24 years old, but it’s challenging for a lot of reasons — for reasons of mobility, for reasons of communication, for reasons of access to people’s homes and cars, there’s a lot of impediments to having a typical social life.”

The team just finished production on a 96-minute feature-length film, The Ride Ahead, that takes place over three years, and will premiere at film festivals in the spring. “It shows a lot more depth about his life,” says Dan, “including him moving out of our house.” Samuel receives support through a federally funded program called Home and Community Based Services, which allows him to live as independently as possible, “which means he is not with his parents all day!” Dan says. Another federal program is a Section 8 housing voucher. “We built an addition on our Concord, NH, property where Samuel lives, and he pays us rent through his Section 8 voucher and from his earned income.”

“No one tells you how to be an adult, let alone an adult with a disability.”
— Samuel Habib
My Disability Roadmap

Samuel Habib’s journey, both across the country and at home, has made Dan proud to be part of the disability community. “Disability is part of the natural diversity of the world,” he says. “Even though having a child with significant disabilities is so challenging in so many ways, it’s made my life much better. I mean he’s taught me so much about patience and compassion, and being open to different people’s experiences, and diversity and marginalized communities, but it’s also just connected me to this world of disability rights and disability justice.”

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