Lessons from a disability road trip
Photo of marathon runner Andrew Peterson and college student Samuel Habib.
By Louise Kinross
In 2008, American photojournalist Dan Habib released Including Samuel, a documentary about his family’s efforts to include his son Samuel, who has cerebral palsy, in every facet of their lives. Today Samuel (photo above right) is a 22-year-old New Hampshire college student. He drives a 350-pound wheelchair, uses a communication device and wants to date. “I want to figure out how to follow my dreams, but nobody tells you how to be an adult, let alone an adult with a disability,” he says in a powerful new film he co-directed called My Disability Roadmap. Samuel and his dad set out across the United States to meet “badass people with disabilities.” Everyone from disability rights activist Judy Heumann to comedian Maysoon Zayid offer Samuel gems of wisdom. Samuel tells Andrew Peterson (photo above left), a marathon runner who was born with fetal alcohol syndrome, that people talk down to him because it’s hard for him to speak. “I ignore anyone who refuses to accept me,” Andrew says. My Disability Roadmap premieres at Toronto’s Hot Docs Festival on May 1. BLOOM interviewed Samuel by e-mail.
BLOOM: What are you studying at college and what do you hope to do?
Samuel Habib: I’m working on getting my Liberal Arts Associate’s degree at New Hampshire Technical Institute. I am currently taking one class a semester. I hope to transfer to a four year school like the University of New Hampshire in the future. My goal is to learn more about filmmaking and to get a girlfriend.
BLOOM: All the disabled people you interview have achieved conventional success in some way. Did you consider interviewing disabled people who haven’t been able to do that?
Samuel Habib: We wanted to focus on people like Judy Heumann, Bob Williams and Keith Jones because they were who I looked up to. They are good advocates and role models for kids and young adults with disabilities. I wanted to ask them 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.
BLOOM: Is there one piece of advice that you’ve most taken to heart, that may benefit other youth?
Samuel Habib: The advice I got from Maysoon was: ‘You are not alone. Find your community.’ That was powerful because I’ve always had a strong community, starting with Beaver Meadow Elementary School. I’m continuing to find my community at [college,] in the disability rights community, at work at the Westchester Institute for Human Development, and in my hometown of Concord.
BLOOM: What was most challenging about creating the film?
Samuel Habib: Setting up and getting all of the interviewing done. We had to fly or drive a long way for the interviews. On our flight to Indianapolis, they turned my power wheelchair on its side both ways, and it got damaged both ways! On our trip to DC 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 three-year-old. I wanted to curse at her but I didn’t. On our New York City trip I had a seizure. But we still got the filming done on all the trips!
BLOOM: As the parent of a child who used to use AAC, I find the technology very cumbersome and frustrating. Because you and some of the people you interviewed who use voice devices pre-recorded their comments, it makes it seem like AAC is much more intuitive and fast and easy than it really is.
Samuel Habib: 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.
BLOOM: You note in the film that your close friends don’t have disabilities. As you grew up, were there no opportunities to meet other disabled kids?
Samuel Habib: I have lived in Concord, New Hampshire my whole life. The Concord schools were inclusive, so actually I’ve had a lot of friends that have disabilities, especially in high school playing Unified soccer, basketball and track. But my best friends do not have disabilities. At least not visible disabilities. Some have mental health challenges or learning disabilities.
BLOOM: What is the greatest obstacle as you become an adult?
Samuel Habib: The biggest challenge for me is getting into the homes of my friends and family members. Sometimes I also get too tired to stay up late, so I miss out on going to bars, parties and dates at night.
BLOOM: What are your hopes for the future?
Samuel Habib: I dream about getting married, having kids, and making more films. I am thinking about transferring to the University of New Hampshire in the future. And travelling around the country and the world. I want to go to the Football Hall of Fame, Mount St. Helens, a Florida Gators game with my cousins, as well as London and Europe.
BLOOM: What advice do you have for health workers?
Samuel Habib: Do not talk down to me. Talk to me like I am an adult. Ask me how I communicate. Be kind and patient. Get to know me. Let us talk first about things like sports and hobbies, or my social life or music. For example, I like bird watching. One doctor is my favourite and we talk about my dating life. It is fun.
In 2010, Dan Habib spoke to BLOOM when Samuel was in Grade 5. My Disability Roadmap will appear as a New York Times Op-Docs in mid May. Father and son are working on a feature-length film for 2023. Check out Samuel’s YouTube channel to see some of his journalism and film projects. Three of the producers of Crip Camp worked on The Disability Roadmap, and most of the production and outreach crew have disabilities. Like this story? Sign up for our monthly BLOOM e-letter: https://bit.ly/3IIK5Qo.