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 making an attempt to advertise,” he says, “is utilizing your incapacity as your best power.” Sigworth sees the lads as future mentors who can change into “a useful resource to quadriplegics in different places in India.” He desires them to show their worst nightmares into changing into a military of
lecturers and helpers, however for a lot of of them, his speech is the primary time they’ve been informed they’ll stay independently.
A big proportion of individuals with spinal wire accidents in growing or low-resource areas stay in poor financial situations with unstructured medical programs and few SCI services. Reasonably than anticipate these international locations 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 steering to well being care suppliers and acute and power SCI survivors on a worldwide degree by way of on-line video programs and help efforts.
All of his efforts are constructed round his understanding that individuals with spinal wire accidents and problems are stronger collectively. “If we will 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 various, 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 house state of Connecticut. Injured throughout his hole yr after highschool, Sigworth began his undergraduate diploma the next yr 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 faculty 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 consumer 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 yr off to make my very own documentary,” he says. Sigworth transferred to Dartmouth after listening to concerning 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 numerous cool initiatives just like the documentary and different issues,” he says.
Sigworth had been returning to India each winter break since his damage. He relished seeing the buddies he’d made there and spreading the phrase about unbiased residing 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 attention-grabbing packages, 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 degree of damage or anybody with a spinal wire damage 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 simply see out on the streets which might be making it.”
Joseph (left) and Gajendra (proper).
A Darkish Time Results in Hope
Again at Dartmouth through the faculty yr, he felt remoted, and grew depressed. “Right here I’m at an excellent faculty, chronically depressed, and but I knew that my pals on the opposite facet 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 lots of his pals in wheelchairs midway all over the world, Sigworth realized what he was lacking. “I believe the true supply of my despair was I simply received disconnected from the spinal wire injured neighborhood,” he says.
Sigworth noticed the identical factor taking place with a buddy in India. “Samir lived in a village the place there have been no different wheelchair customers round. I ended up with the ability to deliver 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 despair, he ended up dying of a abdomen ulcer. And he had reached out to me in his despair. However I simply couldn’t join or really feel that I might assist.”
Understandably, he describes it as a extremely darkish time. “I by no means tried to kill myself, however there was an evening once I went out within the late fall within the parking zone outdoors of my dormitory, regarded down the place the top of the parking zone sloped right into a small gully stuffed with bushes, and I puzzled. What wouldn’t it be like to simply let go of my wheels and let myself roll?” he says.
His experiences bolstered the significance of staying related to your peer neighborhood. “While you don’t, you may have every little thing else on the planet going nicely for you and you may nonetheless really feel alone,” he says. “I by no means need 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.”
Sensible Assets from Extra Than Strolling:
The web site for Sigworth’s nonprofit, Extra Than Strolling, has quite a lot of assets to assist wheelchair customers be taught new expertise and join with others in the neighborhood. There’s an archive of demonstration movies displaying how wheelchair customers do on a regular basis duties like transferring, getting dressed, driving, managing bowel and bladder, and an entire lot extra. Go to: morethanwalking.com/demonstrations. The best strategy to navigate is by way of the classes on the right-hand facet of the webpage.
It’s also possible to go to morethanwalking.com/join.html to attach with a peer mentor, submit your individual movies or be a part of Extra Than Strolling’s SCI peer help group on Fb.
Proceed Studying
Connecting Neighborhood
When he graduated and returned to India within the fall of 2013, Sigworth’s priorities had been clear. He began a transitional residing program referred to as Empowering Spinal Twine Injured Individuals, at first residing with two different quads on the bottom flooring of a three-story home. Aware 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 social gathering in the lounge of his residence. “I used to be the DJ enjoying Bollywood dance hits on my Spotify account for a gaggle of individuals we hadn’t met who had been now partying with the individuals who had been a part of the transitional residing program,” he says.
For some this was their first expertise residing on their very own outdoors of their household house. “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 type of openness that needs to be extra current in our society, however that you simply most frequently discover on a dance flooring.” Within the course of of creating ESCIP, Sigworth discovered that SCI survivors in growing international locations spend a mean of seven years earlier than getting any type of unbiased residing coaching.
Jessica Bello Capote.
Quickly after establishing ESCIP, Sigworth related with the girl who would assist him launch Extra Than Strolling and ultimately change into his spouse. Almost 10,000 miles away, Jessica Bello Capote was working as a bodily therapist in Cali, Colombia. In November 2013, when searching for 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 pals and her work. “I might see he appreciated to inform individuals his story. He already had the thought for Extra Than Strolling and he wished it to be extra worldwide by way of the web,” she says. “He was very enjoyable, attention-grabbing, sensible and we had related priorities. I might see he cared about individuals. He was a very good one who cared, at all times being useful.”
They married in 2016, and labored collectively to start out MTW. “It was all his thought,” she says. “He was the one directing it. Within the first three years, once I had extra time [before a busy PT career], I supported him by giving my perspective from treating individuals with SCI.” Now lots of MTW’s educating movies function not solely SCI survivors demonstrating their expertise, but in addition enter from the bodily remedy perspective as nicely, so PTs and PT college students in every single place can even study SCI.
Priorities and the Future
At the moment, Sigworth just isn’t solely making extra how-to movies but in addition plans to create video programs that unfold unbiased residing expertise and wanted data on essential subjects for the incapacity neighborhood by way of webinars, podcasts, and so on. “I believe the largest points are entry to fundamental rehabilitation, tools, and fundamental advantages like authorities help. These are world points. And entry to lively rehabilitation. Even within the States, individuals is probably not studying a few of the fundamental unbiased residing expertise that they need to be. And this example is mirrored in growing international locations like India and Nigeria and locations the place there aren’t any specialised spinal wire damage hospitals,” he says.
Guidelines that severely restrict caregiving hours are particularly damaging. “For those who want caregivers 24-7, most states require that you simply stay poor. You can not marry somebody who has an honest job or you may lose your caregiving advantages,” he says. “That may 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 right down to their kids. That’s madness and it wants to alter.”
He’s been working to supply employment mentoring across the nation for people who find themselves searching for help in getting again to work, and guiding them on transition off of Social Safety and incapacity, or handle these advantages in order that they aren’t misplaced. Extra Than Strolling is working with SPINALpedia, one of many net’s premier SCI hubs, to deal with mentoring and different vital points. “Jon is a professional and he takes it to the subsequent ranges,” says SPINALpedia founder Josh Basile. Sigworth can be concerned in native advocacy in Connecticut, making an attempt to enhance the timeliness of wheelchair repairs and wheelchair deliveries.
rugby in India.
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 residing expertise and assembly individuals: The guts of his work is definitely encouraging and empowering individuals with SCI to change into leaders and helpers in a bigger motion.
“Nobody desires to affix this membership,” he says. “For many individuals it has at all times 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 on account 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 function as serving to make the world extra open and inclusive in all its kinds — I believe that’s our bigger mission.”
