Jason DaSilva’s award-winning film, When I Walk, raised awareness of what it is like to live with primary progressive multiple sclerosis.

Jason DaSilva’s award-winning film, When I Walk, raised awareness of what it is like to live with primary progressive multiple sclerosis. Photo by Charlie Samuels.

Jason DaSilva is an artist. He will always be an artist, no matter how severe his disability becomes, because of how he thinks, feels, and views the world, and because of his passion and determination to communicate that viewpoint to people of all abilities and cultures. NEW MOBILITY is proud to name him our 2014 Person of the Year — for using his artistic talent and unique vision in a way that will benefit people with disabilities now, and for a long, long time to come.

Filmmaker Jason DaSilva, NEW MOBILITY’S 2014 Person of the Year, is at his desk working on a script with a volunteer assistant. A power wheelchair is nearby, but he’s sitting in an ordinary office chair. As I wonder how he can move about by himself, the assistant turns him around and pushes him gently toward me, ready to be interviewed.

DaSilva poses for a family portrait with his wife, Alice Cook, and their son, Jase. Photo by Michael Varhol.

DaSilva poses for a family portrait with his wife, Alice Cook, and their son, Jase. Photo by Michael Varhol.

All the clichés like the one about life giving you a lemon and you making lemonade fit DaSilva. Not only did doctors tell him that he had multiple sclerosis when he was just 25, but they added that he had the worst kind: primary progressive MS. It’s all downhill. There are no FDA-approved drugs to treat it and unlike some other types of the neurological disorder, there are no remissions. That’s one giant lemon. But instead of crawling into a hole and shutting out the world after doctors told him the news, DaSilva spent the next several years working like crazy, filming his life and its struggles and joys. When he was done, he had made an acclaimed documentary, When I Walk.

The film begins in 2006 with DaSilva and his family on a vacation in the Caribbean. They are on a beach, having a great time. Suddenly, he falls down and can’t get back up. Doctors had told him months before that he had MS, but he decided to ignore it and exercise more. Now, gobsmacked with reality, he has to face it. For the first of many times in the film, he turns to his mother. She reminds him that, despite his disease, he is still a privileged North American kid who has the opportunity to pursue the things he loves most: art and filmmaking. So DaSilva begins filming and goes on a worldwide journey, searching for a cure. He makes stops in India, where he tries yoga, meditation and herbal remedies. In France, he visits Lourdes. In the U.S., he has surgery to increase the blood supply to his brain. Nothing helps, but along the way he meets the remarkable Alice Cook. Both DaSilva and the audience fall in love with her.

DaSilva receives the 2014 Peek Award from the Utah Film Center on Nov. 4.

DaSilva receives the 2014 Peek Award from the Utah Film Center on Nov. 4.

You’d think a film like this would be a downer, or cloyingly inspirational, but DaSilva avoided those traps. “Astonishingly,” said the New York Times reviewer, “this is neither as depressing nor as arm-twistingly uplifting as you might expect.” Critics universally praised When I Walk. It was an official selection of the 2013 Sundance Film Festival and won a ton of awards. It also was seen on movie screens in New York City and Los Angeles, and shown nationally on PBS. You can see it on Netflix, buy it on Amazon or watch a free trailer for it at video.pbs.org/video/2329836404/.

Many disabled people admire the film. “Jason creates a way,” explains George Gallego, a paraplegic friend, “for people with no connection to disability to see, hear and feel what we have to contend with in a world that is not very disability-friendly.” Gallego heads a New York City organization concerned with affordable housing for people with disabilities (www.wheelsofprogress.org).

Did the film’s success fulfill all DaSilva’s dreams? “I think so,” he says. “When I was doing it I didn’t think it would be as successful.” It could hardly have done better, but it was not his first success. He has directed numerous films (see below), many of them prize winners.

DaSilva’s Space for Making Things
Despite his achievements, he’s anything but rich. Documentary filmmakers don’t usually earn a lot of money. DaSilva shares a one-bedroom apartment in Manhattan’s gritty but artsy East Village with Alice (you see them marry in the film), their 2-year-old son Jase, homecare aides, a babysitter and volunteers for their various projects. To reach his building’s front door by wheelchair, you have to roll up a homemade metal ramp. It is dangerously steep and lacks railings. Once inside, you squeeze into a narrow elevator for the ride to the sixth floor. DaSilva’s door is easy to spot.  There’s a note on it that makes it clear that he’s unable to open it by himself: “If you are locked out and Jason is inside, please call one of the numbers (below) and explain who you are and the situation.”

A New Yorker, DaSilva is shown here in the East Village.

A New Yorker, DaSilva is shown here in the East Village.

The apartment’s largest room is the living room. It is incredibly organized to serve many purposes. In one corner is his desk, actually a board supported by a file cabinet and a bookcase. The makeshift desk holds a couple of laptops and other computer equipment. A large flat-screen TV serves as a monitor. Nearby there’s a similar desk with a single laptop. Both desks face a giant blackboard mounted on the wall. It’s filled with chalked to-do lists, notes and charming drawings. The many shelves are filled with books, equipment, storage boxes and wicker baskets. These hold DaSilva’s socks and underwear. With all that’s going on in the room, it is easy to miss the double bed and the folded drop-leaf dining table. Jase sleeps in the apartment’s actual bedroom.

I had wondered if DaSilva in person would be as appealing as the DaSilva you see on screen. As soon as we meet, I stop wondering. He is the same guy and just as likable. I bring up the so-called MS personality, the arguable idea that people who have it are dour, depressed and mournful. DaSilva, in a moment of self-deprecation, says he thinks he has it, but clearly he doesn’t. “I have always been the dark personality,” he argues, “especially when it came to my creative work. I like to view things on the darker side.”

“If you really looked at things that way, you’d jump out the window,” I tell him. “You have such an uncertain future.”

“Yeah, you’re right,” he agrees, with the dazzling smile that’s so winning in the film. “It is all about freedom. As long as I can keep doing things creatively, or making things, I’m OK.”

And he is OK. He hasn’t stopped making things. The script he was working on when I arrived is for a film he had abandoned years ago, but he has picked it up again and is looking for financing. He’s already pitched it to a group of investors in Toronto. It’s a story he has created about a boy growing up in Goa in southern India.

That’s near the home of the 87-year-old relative he visits in When I Walk. DaSilva asks the old man if anyone in their family has ever suffered a disabling condition. He replies unsympathetically that no one ever had. In another Indian scene, DaSilva, then on a walker, struggles past a group of men about his age. They look at him, but it is clear they don’t want anything to do with him.

“I think,” said DaSilva, explaining the lack of empathy, “it is because in the Western world we have a different relationship to disability than they have in India or other places. Disability is so much more apparent there. They probably see these things every day. You know how we have a social concern, and etiquette about looking at people with disabilities. Don’t look long and hard. It is not socially proper. I don’t think they have that same concern there. It is refreshing in a way. I don’t mind that. Here

[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.

DaSilva travelled to India in hopes of finding treatment for his MS.

His Family
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

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.

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.”

Director-Jason-DaSilvaIt 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.