In his award-winning 2009 documentary, Extra Than Strolling, Jonathan Sigworth addresses a big group of quadriplegic males in Pune, India. Sigworth, a C7 quad, was paralyzed in a bicycle accident in India in 2006 when he was 19 and returned to coach and encourage his fellow quads. “What we’re actually attempting to advertise,” he says, “is utilizing your incapacity as your biggest power.” Sigworth sees the lads as future mentors who can develop into “a useful resource to quadriplegics in different places in India.” He needs them to show their worst nightmares into turning into a military of
lecturers and helpers, however for a lot of of them, his speech is the primary time they’ve been instructed they will reside independently.

A big share of individuals with spinal twine accidents in creating or low-resource areas reside in poor financial circumstances with unstructured medical techniques and few SCI services. Slightly than look ahead to these nations to catch up, Sigworth has devoted himself to serving to bridge this hole. In 2016, he based Extra Than Strolling, a nonprofit that gives rehabilitation steerage to well being care suppliers and acute and power SCI survivors on a worldwide stage via on-line video programs and assist efforts.

All of his efforts are constructed round his understanding that individuals with spinal twine accidents and problems are stronger collectively. “If we are able to embrace ourselves as a part of the worldwide disabled neighborhood, we actually could make an enormous distinction,” he says,
“as a result of we’re probably the most numerous, probably the most marginalized group on the planet.”

The Beginnings

Within the acute stage of his SCI, previous to beginning his nonprofit, Sigworth returned to the U.S. to rehab at Gaylord Hospital in his residence state of Connecticut. Injured throughout his hole 12 months after highschool, Sigworth began his undergraduate diploma the next 12 months at close by Wesleyan College. He was nonetheless studying to be unbiased, doing outpatient remedy and rebuilding his power. “I used to be thrown into school lessons and having to dictate papers as an alternative of sort them,” he says. “It was actually a battle to adapt, being the one wheelchair person on a campus that was very hilly.”

Sigworth utilized to Wesleyan’s prestigious movie program, however didn’t get in. “I actually wished to main in movie, so I took a 12 months off to make my very own documentary,” he says. Sigworth transferred to Dartmouth after listening to in regards to the faculty’s beneficiant funding for undergraduate movie college students. “I wished to make use of that funding to return to India to proceed doing varied cool initiatives just like the documentary and different issues,” he says.

Sigworth had been returning to India each winter break since his harm. He relished seeing the buddies he’d made there and spreading the phrase about unbiased dwelling and his different new ardour: quad rugby.

Going backwards and forwards between India and college was like rolling in two completely different worlds. In India, he acted as a job mannequin, implementing enjoyable and fascinating applications, educating expertise he had discovered, and dealing on his movie. “I used to be assembly individuals who had by no means met somebody of my stage of harm or anybody with a spinal twine harm who was unbiased,” he says. “In India, you roll down the center of the road and everybody stares at you as a result of there are only a few wheelchair customers that you just see out on the streets which can be making it.”

A Darkish Time Results in Hope 

Again at Dartmouth in the course of the faculty 12 months, he felt remoted, and grew depressed. “Right here I’m at an excellent school, chronically depressed, and but I knew that my mates on the opposite aspect of the world didn’t have entry to the assets I had,” he says. “What was I going to do with the alternatives I had? Was I benefiting from that? That query was always at the back of my head and the social isolation was nonetheless very actual, very jarring.”

With out entry to wheelchair rugby, and with a lot of his mates in wheelchairs midway around the globe, Sigworth realized what he was lacking. “I believe the true supply of my melancholy was I simply bought disconnected from the spinal twine injured neighborhood,” he says.

Sigworth noticed the identical factor taking place with a good friend in India. “Samir lived in a village the place there have been no different wheelchair customers round. I ended up having the ability to convey him an additional wheelchair that was similar to mine. I stayed in contact with him, however he was additionally depressed and he had some well being points,” he says. “Whereas I used to be at Dartmouth coping with my power melancholy, he ended up dying of a abdomen ulcer. And he had reached out to me in his melancholy. However I simply couldn’t join or really feel that I may assist.”

Understandably, he describes it as a very darkish time. “I by no means tried to kill myself, however there was an evening after I went out within the late fall within the car parking zone exterior of my dormitory, regarded down the place the top of the car parking zone sloped right into a small gully filled with bushes, and I questioned. What would it not be like to only let go of my wheels and let myself roll?” he says.

His experiences strengthened the significance of staying linked to your peer neighborhood. “If you don’t, you may have all the pieces else on the planet going effectively for you and you may nonetheless really feel alone,” he says. “I by no means wish to be in that state once more. I by no means need others to really feel that they’re disconnected and really feel that they don’t have anything to supply.”

Connecting Neighborhood

When he graduated and returned to India within the fall of 2013, Sigworth’s priorities had been clear. He began a transitional dwelling program known as Empowering Spinal Twine Injured Individuals, at first dwelling with two different quads on the bottom flooring of a three-story home. Conscious of the necessity for social interplay, he invited individuals within the neighborhood and other people on the wheelchair rugby group from the hospital to come back to a dance celebration in the lounge of his condo. “I used to be the DJ taking part in Bollywood dance hits on my Spotify account for a bunch of individuals we hadn’t met who had been now partying with the individuals who had been a part of the transitional dwelling program,” he says.

For some this was their first expertise dwelling on their very own exterior of their household residence. “Now they had been on a dance flooring having a good time with worldwide vacationers into the wee hours of the morning,” he says. “I believe this actually speaks to a sort of openness that must be extra current in our society, however that you just most frequently discover on a dance flooring.” Within the course of of building ESCIP, Sigworth discovered that SCI survivors in creating nations spend a mean of seven years earlier than getting any sort of unbiased dwelling coaching.

Quickly after establishing ESCIP, Sigworth linked with the girl who would assist him launch Extra Than Strolling and ultimately develop into his spouse. Almost 10,000 miles away, Jessica Bello Capote was working as a bodily therapist in Cali, Colombia. In November 2013, when in search of instruments to assist a affected person, she discovered Sigworth’s tutorial movies on YouTube and reached out to attach.

Sigworth traveled to Colombia in 2014 and met Bello Capote in individual for the primary time. She launched Sigworth to her mates and her work. “I may see he favored to inform individuals his story. He already had the thought for Extra Than Strolling and he wished it to be extra worldwide via the web,” she says. “He was very enjoyable, fascinating, sensible and we had comparable priorities. I may see he cared about individuals. He was an excellent one who cared, all the time being useful.”

They married in 2016, and labored collectively to begin MTW. “It was all his concept,” she says. “He was the one directing it. Within the first three years, after I had extra time [before a busy PT career], I supported him by giving my perspective from treating individuals with SCI.” Now a lot of MTW’s educating movies characteristic not solely SCI survivors demonstrating their expertise, but additionally enter from the bodily remedy perspective as effectively, so PTs and PT college students in all places also can find out about SCI.

Priorities and the Future

At this time, Sigworth just isn’t solely making extra how-to movies but additionally plans to create video programs that unfold unbiased dwelling expertise and wanted info on essential subjects for the incapacity neighborhood by way of webinars, podcasts, and many others. “I believe the most important points are entry to primary rehabilitation, tools, and primary advantages like authorities assist. These are world points. And entry to energetic rehabilitation. Even within the States, individuals might not be studying among the primary unbiased dwelling expertise that they need to be. And this example is mirrored in creating nations like India and Nigeria and locations the place there aren’t any specialised spinal twine harm hospitals,” he says.

Guidelines that severely restrict caregiving hours are particularly damaging. “Should you want caregivers 24-7, most states require that you just stay poor. You can’t marry somebody who has an honest job or you may lose your caregiving advantages,” he says. “That could be a travesty, an entire injustice that makes individuals with disabilities second-class residents who can’t save for his or her future or go any inheritance all the way down to their youngsters. That’s madness and it wants to vary.” 

He’s been working to offer employment mentoring across the nation for people who find themselves in search of assist in getting again to work, and guiding them on the best way to transition off of Social Safety and incapacity, or the best way to handle these advantages in order that they aren’t misplaced. Extra Than Strolling is working with SPINALpedia, one of many internet’s premier SCI hubs, to sort out mentoring and different crucial points. “Jon is a professional and he takes it to the following ranges,” says SPINALpedia founder Josh Basile. Sigworth can be concerned in native advocacy in Connecticut, attempting to enhance the timeliness of wheelchair repairs and wheelchair deliveries.

A Mission of Social Involvement

Sigworth is a busy man with a transparent mission, and is aware of the worth and energy of socialization. In his view, socialization just isn’t solely about studying unbiased dwelling expertise and assembly individuals: The center of his work is definitely encouraging and empowering individuals with SCI to develop into leaders and helpers in a bigger motion.

“Nobody needs to affix this membership,” he says. “For many individuals it has all the time began as a tragedy. So, to come back from there and to see our mission as making the world extra open, extra inclusive — whereas difficult our personal assumptions and prejudices because of our disabilities — it may be so therapeutic for us and for the world round us.

“To see ourselves as a part of that world motion, and to see our position as serving to make the world extra open and inclusive in all its varieties — I believe that’s our bigger mission.”