Editor’s Note: Filmmaker Jason DaSilva premieres his latest work, When We Walk, an IDA Pare Lorentz Doc Fund grantee, at the Hot Docs Canadian Documentary Film Festival this week. He shares his thoughts here on the making of, and his hopes for, the film. As his health declines due to Primary Progressive Multiple Sclerosis, DaSilva has crafted this article in the form of a letter to his son—as he has done in the making of When We Walk.
To my son, Jase DaSilva, for whom this film is dedicated.
My son, I think about you all the time. I want you to grow up with me. I want you to know me. I want to be an active part of your life. I want to be there whenever you need me. I want to be able to watch you at your soccer games, school plays and musicals. I believe that a father and his son should be around each other. I want you to know that there is no one I love more than you.
For the past three years, my health has been declining, and around this time, you moved away from me. Had I been able to see into the future, I would have done everything to keep you with me. When you left, I had the ability to use my hands. I am now quadriplegic; I cannot use my arms or legs. These days, I drive using a head mount on my special wheelchair. I turn left or right and go forward or back, just by moving my neck. I know the time we have together is limited. Since I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in 2005, it has been a consistent challenge, to say the least. I documented this struggle on film with When I Walk. Now I continue telling our story through When We Walk.
Let me tell you a little more about me. As a filmmaker, my goal is to make visible those who are unseen. Through my films, I tell the stories of people with underrepresented voices. These days, through filmmaking (qualitative storytelling) and AXS Map (quantitative storytelling), I try to do what is right. In a number of films I have followed the path of immersive journalism, prying for the best of humanity in the most challenging and tragic of circumstances. For quite some time, I’ve embedded myself as something of a frontline filmmaker—but nothing could have prepared me for what I’ve encountered over the last three years in the making of my most recent feature, When We Walk.
Since the release of When I Walk, When We Walk has been in production. This was a film intended as a letter to you, Jase, which I created in order that you could learn about me and about issues of disability. As a quadriplegic filmmaker suffering from PPMS, communicating to you about my experiences and challenges is one of the things I hold dearest.
Your mother and I pursued this for three years, filming the time before your birth, the day of your birth and then the aftermath. In 2013 and 2014 I went on the festival circuit to promote When I Walk, and I was continually on the road. Over this time your mother and I were growing more distant. But it was when your mom made the decision to move away to Texas and bring you with her that everything changed dramatically.
You may not understand all of this yet, but you will as you grow up. I know that you are going to grow up to be a smart and inquisitive individual. So I have no doubt that you’ll be able to comprehend what I’m about to break down here: Currently, New York Medicaid provides me with 24/7 in-home care. Recipients like me would lose their benefits if they moved to a new state. After they move, they must reapply, a process that may take six months to three years. Additionally, there is no guarantee that they will be accepted. Even if they are accepted, they may suffer a decline in services. If I move to Texas to be close to you, once I receive my Medicaid benefits, they would only cover a maximum of 48 hours a week. With such limited coverage, I would have to be placed in a nursing home. If that happened, my life as an independent filmmaker, activist and a contributing member of society would end. The drastically reduced level of care available in nursing homes would mean the loss of my mental and physical well-being.
I know this firsthand, as I actually checked into a Texas nursing home. No one was available to help me do basic things, like using the restroom, eating or making phone calls. Tasks relating to my filmmaking and advocacy work, like writing, responding to emails, and editing, were impossible. It was difficult to make arrangements to see you. I was not free to be the father I want to be for you.
Around the time that you moved to Texas, a situation beyond my control caused me to lose the bulk of my funding to complete this film. This made it a challenge for When We Walk to see the light of day. All of a sudden, nobody wanted to touch the documentary—least of all the same institutions that tout their commitment to “freedom of expression” and journalistic sovereignty. It went on this way for a while, until financially I couldn’t keep going. After my funding was cut, I didn’t have any income source to make the film, for the past year and a half. The bizarreness is that When We Walk is the simple exercise of a father’s desire to talk to his son while he still can, and is exactly the kind of story that needs to be shared with people with disabilities and their families, far and wide. I was determined to make this film.
Over this time, I’ve had what might be called a quadruple existential crisis. First, losing you. Second, the thought of losing my career. Third, an ongoing loss of my health. The fourth? My midlife crisis...turning 40. Within this time period, I lost the ability to move my arms completely. At the time when you left, I was able to lift my arm up to wipe away my tears when you were leaving. But I know that I can now no longer lift my arms up at all, and I’ve now lost the ability to see. I’ve asked myself the question, What kind of filmmaker can’t see his own work?
While some large programmers and distributors would not take a chance on this film, there have been several organizations that have really come to my rescue over this ongoing process. The ReelAbilities Film Festival has given a spotlight to my short film, The Disability Trap that streamed on The New York Times Op-Docs last year and was co-sponsored by Firelight Media. My Canadian brethren at the Hot Docs Canadian International Documentary Film Festival are premiering When We Walk, and the Center for Asian American Media will be featuring the film as their documentary centerpiece at CAAM Fest in May. I have to thank my editor, Simeon Hutner, who has stuck with me through thick and thin, and I have to thank IDA (International Documentary Association) for giving me a chance to tell my story here. I also have to extend my thanks to the countless people with disabilities who have been and remain my strongest source of inspiration. Through it all, I consider myself lucky, because I have ultimately been able to tell my story as I wish to tell it, while others in my position too often live out their existences across the USA and Canada in nursing homes, without the hope of a voice.
My story is a small contribution to the ongoing movement of people with disabilities—and their supporters—who pick up a camera to tell their stories. I remember those who ascended the steps of the US Capitol Building on their hands and knees in the 1990 “Capitol Crawl” for the passage of the American with Disabilities Act (ADA). I remember that I am in a position to share my work today because of the efforts and advocacy of activists like Judith Heumann and many great disabled artists and advocates like my colleagues James LeBrecht and Lawrence Carter-Long.
I am a filmmaker who can no longer view the medium that I am working in. I can no longer lay eyes on the things that I make while making them or after completion. This, more than any other time, is when your presence—the sound of your voice, the smell of your hair, the opportunity to talk to you about everything there is to discuss in life—would make all the difference in the world. At the same time, I believe in having a growth mindset versus the alternative—a fixed mindset. Challenges are a way for us to learn and get better over time. At the end of all this, my takeaway has been that no matter the odds, we must remain steadfast in shedding light on the things that matter most, working toward the best social good for the generations that come after us. These are all values that I want to show you and share with you in the making of When We Walk.
Jason DaSilva
Director and Producer
When We walk