From his apartment in Long Island City, an Emmy Award-winning filmmaker quietly pursues his life’s ambition. His work combines documentary information, animation, and recreated real-life scenes to tell stories about ethnic identity, the legal system, and disability.
Especially disability.
Because he is a disabled man himself. Living with primary progressive multiple sclerosis (or PPMS).
At the age of 47, Jason DaSilva is quadriplegic. He creates his art almost entirely through assistants, who realize his ideas by following Jason’s verbal directions. It is a painstaking process, and his projects take many years to reach completion. But Jason is nothing if not persistent, and his seventh movie is now nearing final form.
Jason is the oldest of three boys born to Goan parents of Indian extraction and African heritage. The family bounced between Ohio and Florida before settling in British Columbia in Canada.
Jason was a creative, artistic child. After earning an undergrad degree in multi-media, he moved to New York City late in 2001. The move was part of his artistic process: “I came here right after September 11th,” he told me. “I wanted to follow the repercussions of that day for South Asians, Arabs, and Muslims. Sadly, everything I presumed could happen in the wake of the terrorist attacks actually did happen. I filmed the racial backlash and interviewed people all the way up into the war against Iraq, in 2004.” The result was the documentary film Lest We Forget.
Jason was a very busy man in those years. His student film, Olivia’s Puzzle, was accepted into the Sundance Film Festival in 2003, and by 2005 he’d completed four more movies. Several of them addressed what Jason calls ethic identity retention: “I compared an Indian girl who grew up there with one who grew up in North America, then I did similar projects involving boys from Iraq, then girls from Africa,” he said. “I wanted to show how ethnic identity and culture is affected by transplantation to a different social environment.” Like all of his work, the seed for these projects can be traced to Jason’s own story, as the child of immigrants. “My work stems directly or indirectly from an autobiographical angle. That personal connection is the only way for me to really get invested in a project. Call it ‘write what you know,’ I suppose.”
Disability Becomes Subject and Method
By this point, Jason was having trouble with his vision and his ability to walk. The diagnosis of PPMS followed. True to his pattern of making art with a personal tie-in, Jason decided to document his challenges as a filmmaker living with a degenerative neurological disease. The result was the film When I Walk, a portrait of Jason’s struggles with multiple sclerosis and day-to-day life while losing the ability to walk, over a seven-year period.
When I Walk premiered at the Sundance Film Festival in 2013, and was a Critics Pick in The New York Times, Los Angeles Times, and Village Voice. It was released theatrically and broadcast as the opening film for the 2014 season of the PBS series POV. In 2015, When I Walk won an Emmy Award. It is available for viewing on Amazon Prime.
Meanwhile, Jason got married, to a woman he met at a multiple sclerosis support group, and in 2013, his son Jase was born.
Jason’s artistic output continued, including a short film that should be dear to the heart of any disabled New Yorker, The Long Wait. Subtitled: Experiment: Wheelchair vs. No Wheelchair, it compared how long it took a nondisabled man to travel by subway from Williamsburg to a coffee shop in downtown Manhattan (13 minutes), versus the time Jason needed to get there by public transportation, using a motorized wheelchair (1 hour 43 minutes).
But even this, by any definition a full life, was insufficient for him.
Thirty years ago, while still a student, Jason started a not-for-profit organization known as AXS Lab, to elevate underrepresented voices in film. After getting the PPMS diagnosis, he adapted the organization and began several new initiatives. Among these is an accessibility mapping project called AXS Map, which he describes as “a crowd-sourced platform that allows users to rate and review the accessibility of public spaces like restaurants, transit stops, and businesses.” AXS maps are underway in dozens of locations in several continents, and the organization has reached its 30th anniversary.
The Next Chapter
Sadly, along the way, Jason’s marriage dissolved. His ex moved to Austin, Texas and took their son with her.
Jason was determined to remain close with Jase, so he looked into moving to Texas too. Because of his disability-related service needs, he even stayed briefly in a local nursing home. But disability benefits in that deeply red, western state were so far inferior to their New York equivalents that he had to abandon the effort and return to New York City. Heartbreakingly, “being with my son would have forced me to give up everything else and spend my life in an institution.” Jason wrote about this experience for the New York Times, in a piece entitled “The Disability Trap.”
Jason’s efforts to use the court system to maintain his rights as a parent have fared little better. “People living with disabilities need to know about how the family court system treats us,” he said. “Even in New York, we are almost entirely dismissed, often practically assumed to be incompetent as parents. And because court cases move slowly, we can get severed from our children for years on end. They grow up without us, even though we’re fighting to be with them. That has got to change.”
Jason continues to create his art. A seventh film is nearing completion. Like his other work, it will have autobiographical resonances in service of issues that nondisabled audiences may not be aware of. A feature film—a story, not a documentary—is in the early stages too.
“For me, being disabled is no kind of gift,” Jason concluded. “Making films this way pisses me off. But I have to do it. I just have to.”
For more of Warren Shaw’s work in disability history, please go to www.DisabilityHistoryNYC.com