Samuel’s Journey

“NOBODY TELLS YOU HOW TO BE AN ADULT. LET ALONE AN ADULT WITH A DISABILITY.”

BY ANDREW PULRANG, PHOTOGRAPHY BY DAN HABIB

“My Disability Road Map,” a documentary film by 22- year-old disabled filmmaker Samuel Habib and his father Dan Habib, premiered at the New York Times Op Doc section website on May 17, 2022. It was made in collaboration with a diverse team including Samuel’s father Dan, as well as Jim LeBrecht, Sara Bolder and Andraéa LaVant, who were all involved in the Oscar-nominated and Sundance Award-winning Netflix disability rights documentary “Crip Camp.”

The film is a personal documentary about Samuel, who has multiple physical disabilities, and uses an electric wheelchair for mobility, as well as a speech device to communicate. It is told from his point of view. The camera follows Samuel as he travels the U.S. meeting leaders in disability culture, who he hopes will provide some guidance on how to navigate adolescence and young adulthood with disabilities. These interview segments are set up and discussed in voiceover narration from Samuel, along with scenes of his present life as a college student, his travels in making the film and flashbacks to his earlier childhood growing up and going to school in New Hampshire.

The documentary tells a compelling and optimistic story, while asking some of the most basic and at times emotionally intense questions young people with disabilities have as they grow into adulthood. At the same time, the film draws clear connections between how it was made and what it says.

How does a disabled person who needs other people for everyday care and mobility stake out true independence? “Everyday care” can mean many things to people with different disabilities. For Samuel it means help with nearly every physical movement and task and with every aspect of his creative work. And while he is fortunate to have powerful technology to liberate him and amplify his voice, like many disabled people, he also needs direct one-on-one help from human beings in order to function.

How does someone with clearly visible and audible disabilities cope with the many forms of frustrating interpersonal ableism that can crop up at any time, in any place? The physical barriers are obvious, and the solutions to them are well established, if not always easy to achieve. But the type of ableism Samuel focuses on most in the film isn’t lack of ramps and accessible restrooms, but how people treat him. “I want to curse at people who talk down to me,” Samuel says. But he holds himself back from expressing his true feelings in the moment. “I’m afraid that people would get mad at me,” he admits. It’s a dilemma and emotional strain disabled people struggle with every day.

What can be done to dismantle the many barriers that get in the way of a young disabled person who wants to work, socialize, date and build a family of their own? Samuel wants what most other people want. But his path to achieving them isn’t 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 disabled person use and show gratitude for supportive non-disabled family and friends, while still asserting independence and individuality? This is one of the subtler but most important aspects of the film. Samuel in many ways has an ideally supportive and empowering family and circle of allies, something not all disabled people have. But as he points out, “My life is very intertwined with my parents.” And it’s not just a matter of practical dependence. There is a deeper divide. “Nobody in my family has a disability,” Samuel notes. “None of my close friends have a disability. They don’t understand what it’s like to have a disability.”

Again, most disabled people can relate. It’s part of what leads them, if they are lucky, to connect with a broader disability community. So what do other disabled people have to offer to young disabled people moving into adulthood?

In search of answers to these questions, Samuel interviews a diverse group of leaders in disability culture and advocacy.

It seems to be an energizing experience for Samuel. “I am learning a lot from my mentors with disabilities,” he says. And their message is to look not just inward, to personal goals and aspirations, but outward, to broader purposes. “I’m learning from them how to be a better disability rights advocate,” says Samuel. And by documenting these interviews and his experience meeting new disabled mentors, Samuel is doing just that — sharing the encouragement and guidance he gains with other disabled people. “People paved the way for me,” he asserts. “I want to pave the way for others.”

Samuel poses for a photo with one of his mentors, the disability rights legend Judy Heumann, during a break from their interview for ‘MyDisability Road Map’. (Photo courtesy Trevor Holden)

Samuel plays in a Unified Sports soccer game for Concord High School alongside a teammate in 2018.

By documenting the documentary process as it happens, the end product shows a significantly 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 other people’s help in ways most people his age don’t. This is 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 questions and complex conversations with his speech device.

It is an apparent contradiction the documentary shows Samuel in the process of exploring and resolving, while the mentors he speaks to suggest various approaches to doing this. And as the end product proves, it’s more of a perceived problem than a real, substantive limitation.

Nothing in this documentary is wasted. Samuel’s trips to meet his interview subjects show the barriers he contends with in travel, as well as those unexpected, annoying and exhausting encounters with ableism. And shots of Samuel’s everyday activities underscore the importance of the support services disabled people like him need and don’t always have.

His subjects also represent a varied sample of the disability community. The only drawback is that they are all among the most prominent and visible leaders, who have in various ways obtained comparatively more material security than many disabled people. Samuel meets famous disabled people, and there are good reasons for that approach. But he admits that he is less engaged with ordinary disabled people than he might be, even in his everyday life.

Samuel needed a lot of help to make this documentary — probably more than most personal documentarians do. However, this does not make the film any less Samuel’s. It’s not his father Dan’s story of having a

son with disabilities. That is notable in a culture where “special needs parents” often have an outsized voice in disability discourse. Although it’s Dan behind the camera pointed at Samuel, it’s clearly Samuel who shapes the content and is telling his own story.

“My Disability Road Map” offers a number of important messages:

• Young people with multiple “significant” disabilities have to confront unique barriers to independence and adult recognition.

• Disabled young people thirst to be taken seriously as adult human beings and not as objects of either pity or sentimentality.

• Activism and mentorship with other disabled people is a crucial and much too often missing piece in helping youth with disabilities make a successful and satisfying transition into adulthood.

Finally, who leads the documentary, whose voice is centered, who is profiled and how it was done reinforces these messages. The content was developed by a disabled person, who crafted and posed the interview questions and his own responses using some of the adaptive tools and techniques disabled people use every day. It was produced behind the scenes by a team that includes other disabled filmmakers and artists. And it profiles disabled people who discuss these issues in their own words from a variety of 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 this.“

“My Disability Road Map” efficiently and beautifully argues that the only thing disabled young people may need more than material support is fellowship and guidance from others with disabilities.

A free and fully accessible version, with captions and audio description, is availableat www.mydisabilityroadmap.com. 603