[in the United States] you get the invisible treatment. I personally don’t like that. All of a sudden because I’m in a wheelchair I don’t exist?”
DaSilva travelled to India in hopes of finding treatment for his MS.
Before he was disabled DaSilva sometimes was self-conscious about being Indian. He seldom thinks about that now. His wife, Alice, jokes that his taste buds come from India. “He likes extremely spicy food,” she explains.
His parents are of Indian descent, but they were raised in different countries in east Africa. “My parents were nomads,” he says. “They were private school teachers who went where the jobs were, so I have a weird history.” He was born in Ohio, grew up in Fort Lauderdale, Fla., moved to Vancouver, Canada, where he went to both college and graduate school. He started When I Walk there, and then came back to New York.
His parents separated when he was 18, but he’s friendly with them both. His mother lives in Vancouver and his father lives in Hawaii. Neither his father nor Daniel, one of his two younger brothers, is in the movie. “I tried to put them on camera but they were awkward,” he explains. His other bother, Leigh, 28, spent two years working with Jason on the film.
DaSilva and his wife, Alice Cook, on their wedding day.
Leigh, who appears in a few scenes, said in the past Jason liked to do everything on his own. “He was a lone wolf,” Leigh remembers. “In the beginning of When I Walk, he tries to do it all by himself. Then he needed help. He started getting it within our family, but the network of people helping grew and grew. People love to help him but accepting it was one of the biggest challenges he had to go through. He’s better at that now because he knows people want to help him. They are not doing it out of pity or anything like that.”
As a media and communications consultant in Vancouver, Leigh was able to take time off. He was in India, Lourdes and Paris with his brother. “In Paris we found many subway stations don’t have elevators,” he recalls. “That’s just the way it is. Jason was using a walker back then. He would go slowly down the stairs holding on to the railing. I would go up and down them three or four times with all the equipment. We were younger then,” he laughs. The brothers remain very close. They talk twice a week by Skype.
Transcending Fear, Finding Joy
At the apartment, DaSilva starts describing another film he’s planning when the doorbell rings. It’s two Mormon missionaries. They have come to report on the group of some 100 volunteers they enlisted to check various New York City businesses for accessibility. It is for AXS Maps, another of his projects. You see him and Alice start building it in the film. Today, Alice runs it.
The idea for it grew out of their frustration with New York City’s lack of accessibility. Now, by logging onto AXSMap.com with your smart phone or tablet, you’re able to check beforehand just how wheelchair accessible a place is. The website, which uses Google maps, goes way beyond the city — it covers the world. “There are reviews of Tokyo; Sydney, Australia; and New Zealand,” Alice points out. Everyone who uses it is invited to rate businesses and public places on a five-star scale. So far volunteers have rated more than 7,000 places, says Alice.
With the help of volunteers, this chalkboard is where a lot of that DaSilva creative magic gets organized.
The flowering romance between Jason and Alice is one of When I Walk’s most appealing elements. They first meet at an MS support group. Her mother has the disorder. He had doubts about his appeal to women as a disabled person, but he is soon comfortable with Alice. Once their affair is underway, he asks her the question anyone in his position longs to ask but often is too afraid to bring up: “Do you ever wish you were with somebody nondisabled?”
“Yeah,” she shoots back, momentarily stunning the audience, “but I wish it was you nondisabled.”
Two or three days a week she leaves their apartment for a job managing energy efficiency projects at a real estate firm. Those days, she says, are “pretty hard, but obviously not harder than Jason’s. I am up at 6 a.m. and I’m with the baby for two hours, then Annie, the nanny, comes at 8. I’m generally at work until 6 p.m. Then I take care of the baby and make dinner. After I put the baby down, then I try to spend a little bit of time with Jason. I’m really devoted to my work with him, producing films and digital media.” She raised the money for AXS and gathered all the digital components for the website.
The film finishes on an up note but, as DaSilva is quick to point out, his life didn’t end with the movie. “I still live on,” he says. “The film is done and is great. It winds up with a nice scene and the birth of our baby, but my life still continues, and my MS still gets worse.”
He has gone from using the scooter (that he’d fantasized was a motorcycle) to a power wheelchair because he can no longer grasp its handlebars. “I can’t use my hands now for anything,” he says. His eyesight has dimmed, too. “I am legally blind. Everything is a little blurry. I could read a book but I would read it very slowly, so I would probably have someone read it to me. It is weird. Every three months that passes, it’s different than it was before. I am terrified by how bad it gets. I have no idea, and the doctors don’t give me a clear answer.”
It is hard, too, for Alice to look ahead without fear. “You know,” she says, “primary progressive MS — some people seem to live for a long time, and other people don’t. I don’t know. The future is very uncertain for us. We just don’t know.”
DaSilva hasn’t given up trying to find ways to stop or reverse his MS. He is hoping to be included in an FDA-approved stem cell trial at a New York hospital. “I think that sounds like the best thing.”
He hasn’t lost his passion for filmmaking, either. Once the two Mormons leave the apartment, he wants to talk about the new documentary he has begun. “It’s called, When We Walk,” he says. “It is all about my relationship, as a disabled father, with my son and the problems going places with him. It starts out with how I couldn’t get to the hospital to see Jase’s birth. The film picks up from there. It talks about New York City and the difficulties of getting around by cab and subway. It is really about being able to share experiences with my son as he grows up.”
He doesn’t yet know how it will end. “That’s the joy of documentaries. You never know what the exact ending will be. You have to have this blind faith that it will show itself when it comes. It will come. It hasn’t shown its face yet.
“I’m hoping it’s not a long time from now.”
Jason DaSilva’s Films
2014 Media: Film / Video / Digital Media
Role: Director, Producer, and Writer for all listings.
2014 When We Walk — 84 min.
Synopsis: A work-in-progress documentary film that looks at the problems of accessibility and inclusion through the lens of a father with a disability speaking to his son as he grows up.
2014 Trance — 86 min.
Synopsis: A fiction film in development exploring the traditional culture of Goa, India, and its juxtaposition with modern tourism today.
2013 The Long Wait — 6 min.
Synopsis: A personal account of the broken transit system in New York City for people using wheelchairs or power chairs. New York Times Opinion Documentary (Op Doc) still available for viewing here: nyti.ms/SQLpGU.
2013 When I Walk — 85 min. (www.wheniwalk.com)
Synopsis: An autobiographical feature documentary examining how DaSilva’s world has changed since he was diagnosed with multiple sclerosis.
2009 First Steps — 10 min.
Synopsis: A short point-of-view documentary exploring the beginnings of DaSilva’s personal health crisis and his identity as a filmmaker.
2008 From The Mouthpiece On Back — 64 min (fromthemouthpieceonback.com)
Synopsis: A feature-length documentary exploring how the lives of members in a nine-piece New Orleans brass band became separated after Hurricane Katrina.
2006 Shocking and Awful — 12-part series
Synopsis: A one-hour series with segments investigating a grassroots response to war and the U.S. occupation of Iraq. DaSilva is the producer for one segment called “National Insecurities.”
2006 Twins Of Mankala — 10 min.
Synopsis: A short film comparing the life of an 8-old girl living in the village of Kilo, Kenya, with the lives of twin sisters of Kenyan descent living in Lowell, Mass.
2005 A Song For Daniel — 11 min.
Synopsis: A short film comparing the lives of two Iraqi boys during the Iraqi war — one living in Long Island, N.Y., and the other in Baghdad, Iraq.
2003 Lest We Forget — 55 min.
Synopsis: A feature-length film drawing parallels between post-9/11 racial backlash and Japanese internment camps after Pearl Harbor attacks.
2001 Olivia’s Puzzle — 12 min. (www.oliviaspuzzle.com)
Synopsis: A short film comparing the daily life of an 8-year girl living in Goa, India, with the life of a young girl of Goan ancestry living in Vancouver, Canada.