“Nobody tells you how to be an adult. Let alone an adult with a disability.
“My roadmap for disability”, a documentary film by 22-year-old disabled filmmaker Samuel Habib and his father Dan Habib, premiering at New York Times Op Doc Section website on May 17, 2022. It was produced in collaboration with a diverse team including Samuel’s father, Dan, as well as Jim LeBrecht, Sara Bolder and Andraéa LaVant, all of whom starred in the Oscar-nominated Netflix disability rights documentary and winner of the Sundance Award. “CripCamp”.
“My Disability Roadmap” is a personal documentary about Samuel, who has multiple physical disabilities and uses an electric wheelchair to get around, as well as a voice device to communicate. It is told from his point of view. The camera follows Samuel as he travels across the United States to meet leaders in disability culture, who he hopes will provide guidance on how to navigate adolescence and young adulthood with disabilities. These interview segments are set up and discussed in Samuel’s voice-over narration, along with scenes from his current life as a student, his travels to make the film, and flashbacks to his early childhood growing up and going. at school in New Hampshire.
The documentary tells a compelling and upbeat story, while asking some of the most basic and sometimes emotionally intense questions young people with disabilities ask themselves as they grow into adulthood. At the same time, the film makes clear connections between how it was made and what it says.
How can a person with a disability who needs others for daily care and mobility claim true independence? “Everyday care” can mean a lot to people with different disabilities. For Samuel, this means assistance with almost all physical movements and tasks, and with all aspects of his creative work. And while he’s blessed with powerful technology to liberate him and amplify his voice, like many people with disabilities, he also needs direct, one-on-one help from human beings to function.
How does a person with clearly visible and audible disabilities deal with the many frustrating forms of interpersonal ableism that can arise anytime, anywhere? The physical barriers are obvious, and the solutions to address them are well established, if not always easy to put in place. But the type of ableism that Samuel focuses on most in the film isn’t the lack of ramps and accessible restrooms, but how people treat him. “I want to curse people who speak badly to me,” Samuel says. But he refrains from expressing his true feelings at the moment. “I’m afraid that people will get angry with me,” he admits. It is a dilemma and an emotional strain that people with disabilities face every day.
What can be done to dismantle the many obstacles that stand in the way of a young person with a disability who wants to work, socialize, date and start a family of their own? Samuel wants what most others want. But his path to reaching them is not at all clear, and relatively few people, organizations or even advocacy groups seem to offer credible “road maps” for Samuel and young people like him.
How does a young person with a disability use and show gratitude for the support of non-disabled family and friends, while affirming their independence and individuality? This is one of the most subtle, but most important aspects of the film. In many ways, Samuel has an ideally supportive and empowering family and circle of allies, which not all people with disabilities have. But as he points out, “My life is very much linked to that of my parents.” And it’s not just a matter of practical addiction. There is a deeper division. “No one in my family has a disability,” notes Samuel. “None of my close friends have a disability. They don’t understand what it’s like to have a disability.
Again, most people with disabilities can understand. It’s part of what brings them, if they’re lucky, to connect with a wider disability community. So what do other people with disabilities have to offer young people with disabilities entering adulthood?
Seeking answers to these questions, Samuel interviews a diverse group of disability culture and advocacy leaders. Throughout the film, Samuel and the audience meet:
- Judy Heumann, pioneering disability rights activist, author and one of the subjects of “Crip Camp”.
- Bob Williams, another long-time disabled activist who also uses a voice device like Samuel does.
- Keith Jones, disabled musician and activist.
- Maysoon Zayid, comedian and actor with a disability.
- Andrew Peterson, disabled mentor and activist.
- Ali Stroker, Broadway and television actor.
- Lydia XZ Brown, autism educator and activist.
It seems to be an energizing experience for Samuel. “I learn a lot from my disabled mentors,” he says. And their message is to not just look inward, toward personal goals and aspirations, but outward, toward larger goals. “I learn from them how to be a better disability rights advocate,” says Samuel. And by documenting these interviews and his experience of meeting new mentors with disabilities, Samuel is doing just that: sharing the encouragement and guidance he gets with other people with disabilities. “People paved the way for me,” he says. “I want to pave the way for others.”
By documenting the documentary process as it happens, the final product shows a severely disabled young man navigating and exploring adult life, and how the world responds to him. It also highlights a common but widely misunderstood contradiction. To be independent and develop his voice, Samuel needs the help of others, unlike most people his age. It’s true in his everyday life, and in the process of making the documentary. It takes a lot of time and meticulous work with others just for Samuel to compose his complex questions and conversations with his voice device. Here is a clip showing how he and his father prepare interview questions and comments for one of his interviews:
It’s an apparent contradiction that the documentary shows Samuel exploring and resolving, while the mentors he talks about suggest various approaches to getting there. And as the final product proves, it’s more of a perceived problem than a real and substantial limitation.
Nothing in this short but dense documentary is wasted. Samuel’s travels to meet his interview subjects show the obstacles he faces in travel, as well as those unexpected, boring and exhausting encounters with ableism. And images of Samuel’s daily activities underscore the importance of support services that people with disabilities like him need and don’t always have.
His subjects themselves also represent a diverse cross-section of the disability community. The only downside is that they are all among the most prominent and visible leaders, who in various ways have achieved comparatively greater material security than many disabled people. samuel meets popular people with disabilities, and there are good reasons for this approach. But he admits he is less engaged with ordinary people with disabilities than he might be, even in his day-to-day life.
Samuel needed a lot of help to make this documentary – probably more than most personal documentarians. However, that doesn’t make the movie any less of Samuel’s. It’s not his dad Dan’s story of having a disabled son. This is remarkable in a culture where “parents with special needs” often have an outsized voice in the disability discourse. Although it’s Dan behind the camera pointed at Samuel, it’s clearly samuel that shapes the content and tells its own story.
“My Disability Roadmap” offers a number of important messages:
- Youth with multiple “significant” disabilities face a unique set of barriers to independence and recognition from adults.
- Young people with disabilities crave to be taken seriously as fully grown human beings, not as objects of pity or sentimentality.
- Activism and mentorship with other people with disabilities are crucial and too often missing elements in helping young people with disabilities achieve success and success in their transition to adulthood.
Finally, who directs the documentary, whose voice is centered, who is profiled, and how it was done reinforces these messages. The content was developed by a person with a disability, who designed and posed the interview questions and their own answers using some of the adaptive tools and techniques that people with disabilities use every day. It was produced behind the scenes by a team that includes other filmmakers and artists with disabilities. And it portrays people with disabilities discussing these issues in their own words from different angles.
“My advice to children, teens and young adults with disabilities,” says Samuel, “is to ‘find your community’. One of my mentors, Maysoon Zayid, told me that. “
“My Disability Roadmap” effectively and beautifully argues that the only thing young people with disabilities need more than material support is the companionship and guidance of other people with disabilities.
The film can be viewed for free at this link. A free and fully accessible version, with subtitles and audio description, is available at www.mydisabilityroadmap.com.