Arts & Entertainment
Documenting Disability
A successful young filmmaker explores his worsening multiple sclerosis
paulhiebert@hotmail.com
There was a time when any young documentary filmmaker would have wanted to be in Jason DaSilva’s position. In his early twenties, living in Manhattan, he had a burgeoning career. Olivia’s Puzzle, his senior-year film project from Emily Carr University of Art and Design in Vancouver, Canada, was screened at over 30 film festivals, including the coveted Sundance. It won awards and garnered an Oscar qualification. He was in negotiations with HBO, PBS and CBC about broadcasting his work, and had began his own production company, In Face Films. He was set to begin his profession in the highly competitive film industry, as a highly competitive filmmaker.
But while at the Sundance in 2003, his body began acting strange.
“I remember walking a bit slower and off balance for my screenings,” said DaSilva. “So I would always show up a little bit late.” His ability to walk became increasingly impaired over the next couple of years, but he largely ignored it. After all, bodies do unexpected things from time to time, and he was relatively healthy. He did not even bother getting health insurance.
But he dragged his feet and had trouble walking in a straight line, and his mother got worried. One Christmas at his grandma’s house in Toronto, his mom, Marianne D’souza, asked him to walk quickly down the stairs. He nearly fell down the staircase.
D’souza went to the computer, typed some pithy phrases into a search engine – “falling down stairs” “not walking properly” “lack of balance” – and concluded that her son had Multiple Sclerosis.
DaSilva had avoided doctors and hospitals for the previous five years, but at the urgent request of his mother agreed to go in for testing. Back in New York, he visited a neurologist and underwent an MRI. Within two weeks, he was diagnosed with primary progressive Multiple Sclerosis. He was 26.
Multiple Sclerosis, or MS, is still a fairly mysterious disease. What is known is that it affects the central nervous system, disrupting nerve impulses traveling between the brain and spinal cord. According to the National Multiple Sclerosis Society (NMSS), symptoms include fatigue, immobility, numbness, and pain. Some symptoms will be temporary; others, chronic. “MS symptoms range from numbness and tingling to complete paralysis,” Arney Rosenblat, a spokesperson for NMSS, wrote in an email. “The hallmark of the disease is unpredictability.” Over two million people around the globe are estimated to have it.
Recognizing Reality
DaSilva continued making films, largely ignoring what was happening because it was too big and confusing to deal with. But his health continued to decline. With pressure mounting, DaSilva broke up with his girlfriend, moved back to Vancouver and returned to Emily Carr to earn his master’s degree. “I think it was my way of running away,” he said. “I was depressed, and it was my way of not showing people that it was getting worse. I wanted to keep some weird sense of self-pride.”
Eventually he was forced to confront his condition. With the help and support of friends and family, he began making a feature-length documentary about his life with MS, titled When I Walk. Three to four months into the project, it was already having an impact on him.
“It’s weird seeing myself on camera because, I’m doing things that I may never be able to do again,” he said. “Like, that was the last time I walked without holding onto anything. That was the last time I was able to get up the stairs in a certain place. It’s a constant ‘this could be the last time I can do this.’”
DaSilva could not have imagined any of this happening five years ago, and he does not want to think about what life will be like in 10 years. “I didn’t know that it was going to be difficult to make food or take a shower,” he said. “It’s even going to be difficult for me to change in the morning.” His worst fear is that one day he will be incapable of doing anything, which is a possibility.
So that DaSilva, now 30 and back in New York, can get in and out of home, his landlord had to install two makeshift ramps at his residence on the Lower East Side – one past the building’s entrance steps, the other to his apartment. “If there was no ramp and I didn’t have a scooter, I wouldn’t be able to leave the apartment,” he said.
In one sense, DaSilva has plenty of company. According to Susan Burch Ph.D. of Middlebury College, editor of the “Encyclopedia of American Disability History,” there are more people in the world living with disabilities than there are Americans. “If we live long enough, all of use will be affected by disabilities either directly or indirectly,” she said. “It’s an incredibly human experience.”
DaSilva intends to spread his story via blogging, Twitter, Facebook, YouTube, and an iPhone application. “People see me telling my story, and then they want to tell their story,” he said. “It’s great seeing people who wouldn’t regularly have the chance to meet come together through the Internet.”
“The perception of disabled people has changed for the better, but a lot of work still needs to be done,” said Pratik Patel, the director of the Society for Disability Studies. “As we go into the modern communication age, I have great hopes that the disability community will be able to spread its message.”
The Independent Television Service, funded by the Corporation for Public Broadcasting, has awarded DaSilva substantial funds to produce his film. He expects to finish When I Walk by August 2010, and begin screening it in early 2011.
DaSilva gets tired of the stigma attached to being disabled, but understands what it is like to be a young and healthy person living in New York who never thinks about getting old or sick, because that was him, just over five years ago. “Now I’m embodying what MS is doing to the world,” he said. “The story is not just about me; it’s about everyone who has MS.”
Jason DaSilva
Photo Courtesy of Jason DaSilva