It was the last normal Monday afternoon in New York City when I interviewed Emmy-winning filmmaker and disability rights advocate Jason DaSilva. I use normal loosely because in late March, things were already becoming grim and somber. COVID-19 would soon be turning the city into something unrecognizable to anyone, even to those of us who have lived here all our lives.
For Jason DaSilva, this phenomenon that we’ve experienced globally hits too close to home. Nearly two decades ago, DaSilva was living the dream that many of us could only imagine. He was traveling all over the world to document and film different ways of life, different cultures, and different beauties. He earned his bachelor’s degree from Emily Carr University of Art and Design in Vancouver in 2001, and his undergrad film, Olivia’s Puzzle, was accepted into the Sundance film festival in 2003.
In the four years after graduating, he ambitiously completed four films: Lest We Forget, From the Mouthpiece On Back, Twin Mankala, and A Song for Daniel. In each film, he explores the blending of western and eastern cultures and the disparities of growing up in two different geographical locations.
However, in 2005 at a tender age of 25, DaSilva was having trouble with his vision and ability to walk. He received the diagnosis of primary progressive multiple sclerosis (MS) and learned that his physical abilities would begin to deteriorate over time. Once a completely independent man, today he can’t do the essential daily activities like dressing, bathing, and eating, without significant help from his personal care attendants.
After receiving his diagnosis, DaSilva decided to take a break from filmmaking and go back to his alma mater to work towards his MFA in Applied Media Arts. He received a full scholarship from the Social Sciences and Humanities Research Council of Canada for his graduate studies. While still in school, DaSilva founded and established the disability non-profit organization, AXS Lab, and AXS Map, a crowd-sourced Google Maps based platform that rates the wheelchair accessibility of storefronts and landmarks.
Staying true to his filmmaker spirit, even during his hardest times, DaSilva documented his journey of facing his MS diagnosis and drastically shifting his way of life because of it. His groundbreaking film, When I Walk, walks the audience through his raw grappling of this sudden and speedy progression of the disease. The film was honored with the News and Documentary Emmy Award in 2015.
DaSilva told CAAM that one thing that he wishes he had known all these years ago when he first received his diagnosis is that “it’s going to be a real challenge, but you’re going to make it work. I’d like to tell my 25-year-old self that it’s going to be a bumpy ride, but you’re going to make it out.” Ironically, during the FaceTime interview, he was on a very bumpy car ride on Access-A-Ride, NYC’s paratransit service.
Now in 2020, DaSilva is still following his passion for filmmaking, but with significant modifications. He is slowly losing his vision, making it difficult for him to see the camera shots. However, with the help of his caretakers and the last bit of sight that remains, he continues to film documentaries. Navigating the art of filmmaking is undoubtedly a creative challenge with MS, and DaSilva takes pride in the fact that it pushes him to capture life from a unique angle.
At the end of 2018, DaSilva released the sequel When We Walk, which was screened at CAAMFest 37 in 2019. It’s very much a love letter to his son Jase as well as a continuation of his journey of living with this ever-so progressive disability. DaSilva has never let MS prevent him from being the best father to Jase as he could be. But his life turned upside down once again when he and his wife Alice separated in 2017, and she took their son with her to Texas, leaving DaSilva behind in New York City.
Just like in When I Walk, DaSilva doesn’t shy away from any aspect of his life in When We Walk; he portrays the heart-wrenching reality of his MS becoming too much for Alice to manage, on top of caring for their son. The love that once tied the couple tightly together is now tarnished, and DaSilva faces legal obstacles to fatherhood.
At the beginning of the separation, DaSilva would fly back and forth to Texas to see Jase as much as possible. However, as his MS progresses, traveling takes a more substantial toll on him, and he relies on video chat to stay in touch with his son. No matter how advanced technology becomes, it cannot replace in-person connections, especially when witnessing a child’s milestones in life.
DaSilva has filed for custody of Jase, but it’s a long, complicated process. “I have to see him only occasionally,” he explains. “So it’s only according to whether the court will allow me to see him. The distance that separates us is what makes it really hard. So as you can imagine, it’s hard for me from day to day to talk about it.”
Admittedly, DaSilva knows that When We Walk explains merely his side of the story, “It’s me trying to grapple with these changes while not being able to engage with the other person,” he explains. “So, Alice never wanted to be on the camera, nor did she want to talk about it. So I was just left trying to wrap things around in my head.”
With uncertainties about what more abilities MS would deteriorate, DaSilva’s most significant motivation for making When We Walk was to explain his side of the story to Jase and to show the depth of his fatherly love. Also, the filmmaker hopes that this film would shed light on the obstacles that people with disabilities face in America, from the inaccessible nature of large parts of this country to institutionalized prejudice that keeps children away from parents with disabilities.
This year marks the 30th anniversary of the passage of the Americans with Disabilities Act, but there is still a long road ahead to a truly equitable and accessible society. “I think the key is to keep fighting, just to keep making noise,” DaSilva expresses.
He is working on the third and last part of the When I Walk trilogy— When They Walk, in which he will continue the disability narrative, but go above and beyond the confines of his own story. Like the first two films in the trilogy, When They Walk has received funding from CAAM.
Watch special Father’s Day weekend screenings of When I Walk and When We Walk
Both conversations will feature ASL interpretation and the films will be presented with optional closed captioning.
Sarah Kim is a freelance writer and journalist based in Brooklyn, and she holds a master’s degree from Columbia Journalism School. Sarah largely writes about diversity and inclusion in the realm of disabilities, race, and gender; her work has appeared in Forbes, Teen Vogue, The Daily Beast, The Mighty, Columbia Journalism Review, Huffington Post, and others.