In his award-winning 2009 documentary, More Than Walking, Jonathan Sigworth addresses a large group of quadriplegic men in Pune, India. Sigworth, a C7 quad, was paralyzed in a bicycle accident in India in 2006 when he was 19 and returned to educate and inspire his fellow quads. “What we are really trying to promote,” he says, “is using your disability as your greatest strength.” Sigworth sees the men as future mentors who can become “a resource to quadriplegics in other places in India.” He wants them to turn their worst nightmares into becoming an army of
teachers and helpers, but for many of them, his speech is the first time they’ve been told they can live independently.

A large percentage of people with spinal cord injuries in developing or low-resource regions live in poor economic conditions with unstructured medical systems and few SCI facilities. Rather than wait for these countries to catch up, Sigworth has dedicated himself to helping bridge this gap. In 2016, he founded More Than Walking, a nonprofit that provides rehabilitation guidance to health care providers and acute and chronic SCI survivors on a global level through online video courses and support efforts.

All of his efforts are built around his understanding that people with spinal cord injuries and disorders are stronger together. “If we can embrace ourselves as part of the global disabled community, we really can make a huge difference,” he says,
“because we are the most diverse, the most marginalized group on the planet.”

The Beginnings

In the acute stage of his SCI, prior to starting his nonprofit, Sigworth returned to the U.S. to rehab at Gaylord Hospital in his home state of Connecticut. Injured during his gap year after high school, Sigworth started his undergraduate degree the following year at nearby Wesleyan University. He was still learning to be independent, doing outpatient therapy and rebuilding his strength. “I was thrown into college classes and having to dictate papers instead of type them,” he says. “It was really a struggle to adapt, being the only wheelchair user on a campus that was very hilly.”

Sigworth applied to Wesleyan’s prestigious film program, but didn’t get in. “I really wanted to major in film, so I took a year off to make my own documentary,” he says. Sigworth transferred to Dartmouth after hearing about the school’s generous funding for undergraduate film students. “I wanted to use that funding to go back to India to continue doing various cool projects like the documentary and other things,” he says.

Sigworth had been returning to India every winter break since his injury. He relished seeing the friends he’d made there and spreading the word about independent living and his other new passion: quad rugby.

Going back and forth between India and university was like rolling in two different worlds. In India, he acted as a role model, implementing fun and interesting programs, teaching skills he had learned, and working on his film. “I was meeting people who had never met someone of my level of injury or anyone with a spinal cord injury who was independent,” he says. “In India, you roll down the middle of the street and everyone stares at you because there are very few wheelchair users that you see out on the streets that are making it.”

A Dark Time Leads to Hope 

Back at Dartmouth during the school year, he felt isolated, and grew depressed. “Here I am at a very good college, chronically depressed, and yet I knew that my friends on the other side of the world did not have access to the resources I had,” he says. “What was I going to do with the opportunities I had? Was I making the most of that? That question was constantly in the back of my head and the social isolation was still very real, very jarring.”

Without access to wheelchair rugby, and with many of his friends in wheelchairs halfway around the world, Sigworth realized what he was missing. “I think the real source of my depression was I just got disconnected from the spinal cord injured community,” he says.

Sigworth saw the same thing happening with a friend in India. “Samir lived in a village where there were no other wheelchair users around. I ended up being able to bring him an extra wheelchair that was very similar to mine. I stayed in touch with him, but he was also depressed and he had some health issues,” he says. “While I was at Dartmouth dealing with my chronic depression, he ended up dying of a stomach ulcer. And he had reached out to me in his depression. But I just couldn’t connect or feel that I could help.”

Understandably, he describes it as a really dark time. “I never tried to kill myself, but there was a night when I went out in the late fall in the parking lot outside of my dormitory, looked down where the end of the parking lot sloped into a small gully full of trees, and I wondered. What would it be like to just let go of my wheels and let myself roll?” he says.

His experiences reinforced the importance of staying connected to your peer community. “When you don’t, you can have everything else in the world going well for you and you can still feel alone,” he says. “I never want to be in that state again. I never want others to feel that they are disconnected and feel that they have nothing to offer.”

Connecting Community

When he graduated and returned to India in the fall of 2013, Sigworth’s priorities were clear. He started a transitional living program called Empowering Spinal Cord Injured Persons, at first living with two other quads on the ground floor of a three-story house. Mindful of the need for social interaction, he invited people in the neighborhood and people on the wheelchair rugby team from the hospital to come to a dance party in the living room of his apartment. “I was the DJ playing Bollywood dance hits on my Spotify account for a group of people we hadn’t met who were now partying with the people who were part of the transitional living program,” he says.

For some this was their first experience living on their own outside of their family home. “Now they were on a dance floor having a great time with international tourists into the wee hours of the morning,” he says. “I think this really speaks to a kind of openness that should be more present in our society, but that you most often find on a dance floor.” In the process of establishing ESCIP, Sigworth learned that SCI survivors in developing countries spend an average of seven years before getting any kind of independent living training.

Soon after establishing ESCIP, Sigworth connected with the woman who would help him launch More Than Walking and eventually become his wife. Nearly 10,000 miles away, Jessica Bello Capote was working as a physical therapist in Cali, Colombia. In November 2013, when looking for tools to help a patient, she found Sigworth’s instructional videos on YouTube and reached out to connect.

Sigworth traveled to Colombia in 2014 and met Bello Capote in person for the first time. She introduced Sigworth to her friends and her work. “I could see he liked to tell people his story. He already had the idea for More Than Walking and he wanted it to be more international through the internet,” she says. “He was very fun, interesting, smart and we had similar priorities. I could see he cared about people. He was a good person who cared, always being helpful.”

They married in 2016, and worked together to start MTW. “It was all his idea,” she says. “He was the one directing it. In the first three years, when I had more time [before a busy PT career], I supported him by giving my perspective from treating people with SCI.” Now many of MTW’s teaching videos feature not only SCI survivors demonstrating their skills, but also input from the physical therapy perspective as well, so PTs and PT students everywhere can also learn about SCI.

Priorities and the Future

Today, Sigworth is not only making more how-to videos but also plans to create video courses that spread independent living skills and needed information on important topics for the disability community via webinars, podcasts, etc. “I think the biggest issues are access to basic rehabilitation, equipment, and basic benefits like government support. These are global issues. And access to active rehabilitation. Even in the States, people may not be learning some of the basic independent living skills that they should be. And this situation is mirrored in developing countries like India and Nigeria and places where there are no specialized spinal cord injury hospitals,” he says.

Rules that severely limit caregiving hours are especially damaging. “If you need caregivers 24-7, most states require that you remain poor. You cannot marry someone who has a decent job or you can lose your caregiving benefits,” he says. “That is a travesty, a complete injustice that makes people with disabilities second-class citizens who can’t save for their future or pass any inheritance down to their children. That is insanity and it needs to change.” 

He’s been working to provide employment mentoring around the country for people who are looking for support in getting back to work, and guiding them on how to transition off of Social Security and disability, or how to manage those benefits so that they aren’t lost. More Than Walking is working with SPINALpedia, one of the web’s premier SCI hubs, to tackle mentoring and other critical issues. “Jon is a pro and he takes it to the next levels,” says SPINALpedia founder Josh Basile. Sigworth is also involved in local advocacy in Connecticut, trying to improve the timeliness of wheelchair repairs and wheelchair deliveries.

A Mission of Social Involvement

Sigworth is a busy man with a clear mission, and knows the value and power of socialization. In his view, socialization is not only about learning independent living skills and meeting people: The heart of his work is actually encouraging and empowering people with SCI to become leaders and helpers in a larger movement.

“No one wants to join this club,” he says. “For many people it has always started as a tragedy. So, to come from there and to see our mission as making the world more open, more inclusive — while challenging our own assumptions and prejudices as a result of our disabilities — it can be so healing for us and for the world around us.

“To see ourselves as part of that global movement, and to see our role as helping make the world more open and inclusive in all its forms — I think that’s our larger mission.”

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