For filmmaker Jason DaSilva, life has not always been easy. In his first feature-length documentary, the Emmy Award-winning When I Walk, he documents facing a diagnosis of multiple sclerosis. His new documentary, When We Walk, is as much a love letter to his young son as it is a film about living with multiple sclerosis. I think particularly because it is a film made by someone who is disabled, it’s very much a relatable, human film about the ups and downs of life, about family separation, and about our healthcare system.
Along with being a filmmaker, DaSilva is also founder of AXS Map, a crowd-sourced tool he created. The map allows people to rate how wheelchair accessible businesses are.
I chatted with DaSilva on the phone about his film, about why he makes films, and the upcoming CAAMFest37 Centerpiece screening of his film. DaSilva will be in attendance at the Sunday, May 12th screening at the AMC Kabuki in SF Japantown. There, DaSilva will be giving away free AXS Map t-shirts to the first 50 attendees, and encouraging folks to participate in the project (learn more about how to join the CAAMFest AXS Mapathon).
What inspired you to make films and be a filmmaker?
I think that film has the ability to tell a story about communities that you wouldn’t otherwise hear from. That’s what I think my mission is. It’s really the storytelling – it has the power to serve the underrepresented communities.
One thing that strikes me about the documentary is that there is a lot of verite footage. I was wondering how often you were being filmed, and was it on planned days, or just as often as possible?
It was pretty much all the time. There were times when the camera was rolling all the time. A lot of it has to do with the fact that I have a very specific way I have my care set up. My care aids, they’re always going to be here, 24/7. If I follow that in line with my career and film goals, if you put the two side by side, I can actually get a lot of things done. It’s a combination behind my care aids, the care assistants, and real shooters. It’s a very innovative way to make film.
Wow, you taught your care aids and assistants how to film?
Yes, I teach them how to do it.
Why do you feel the need to document this period of your life?
It’s the only way that anybody will know about it. Nobody else can tell this story. It’s so intimately done. The story is really unique because it’s really a story that you wouldn’t know otherwise. It’s not told from the outside, it’s told from the inside. People just don’t know about these stories. You’re getting a first person perspective from someone with a disability, which is very rarely done. It’s not usually done in a big long feature film like this. Most importantly, it’s for my son.
The film is really a love letter to your son, Jase, who is probably too young now to understand everything. Has he seen any of it, and when do you think he will watch it?
I don’t know. That’s still a question in my head. He’s seen parts of it. I don’t think that any kid really wants to see themselves and their younger selves. He’s not really interested in that. He’s interested in growing up. It’s, for him, a chance to look at what his dad and mom went through. I think later in life, as he grows up. I don’t have a timeline, but it will be older than he is now.
In the film, you are very vulnerable and you show that you are very dependent on others to function. In society, that’s not something we really see often or talk about. Can you talk more about that?
It’s to give people something that they don’t see. I don’t just come from a film background, I come from a performing arts background. I was trained from people like Marina Abromovic. People like Yoko Ono and Andy Warhol – they pushed art to the next level. Even though I’m a filmmaker, I was trained in performing arts. So they go hand in hand. Now, because documentary has shifted ears and these stories are able to be told, we could, for the first time, tell these stories. That’s why I don’t mind being on camera. This film is pushing the boundaries of documentary. I hope that’s one legacy that I’m known for – the legacy of documentary film.
At the end of the day, I can talk on and on about this and documentary film, but it’s important to know it’s a story from his father to his son. It’s about a broken Medicaid system. The buck stops at two things: why do you take me away from my son, when I’m not able to function due to a broken Medicaid system? As you see in the film, I’m stuck in New York. The extreme is that I would have to move to a nursing home if I moved to a different state. Not all the states, but certain states.
It’s all about a family, at the end of the day. It’s an intergenerational family. My family is very supportive. We’re a typical South Asian family, and we are very close knit. I want to pass on the message to my son. It’s important to support people that you love. It’s important to support your family. They could go different ways: you can shun someone with a disability, or bring them in. I’m really lucky that my family keeps me functioning. In that way, they are atypical of a South Asian or Asian family.
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This interview has been edited for length and clarity.
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