Guest Post: A Review of "When We Walk"
By: Andrew Ryder
My life experiences are quite different from quadriplegic filmmaker Jason DaSilva’s: I am the neurotypical father of a 16-year-old boy with Down syndrome. Our family has dealt with intellectual rather than physical disability, and in our case the son is disabled while, for the DaSilvas, the father is. Finally, DaSilva has a degenerative disease, while my son does not.
However, I had the good fortune to be in Manhattan on a Saturday afternoon this August when his film When We Walk was being screened at the Asia Society Museum—where I joined a friendly and supportive crowd to watch the film and to hear from the filmmakers (writer/director/producer DaSilva and his cinematographer, Dan Gold). I found myself resonating strongly with the challenges of being a father to a son who is unlike me in certain ways, while very similar in others. I think that all audience members, regardless of their experiences with disability, can relate to this element of the film, which is its heart. It is the story of a father who wants to be close to his son, and who faces significant and always-changing obstacles to that effort.
When We Walk is a deeply personal expression of filmmaker Jason’s passion for family, filmmaking, and equitable access for disabled people. It picks up more or less where DaSilva’s 2013 When I Walk leaves off, chronicling his continuing journey as a filmmaker with a progressive disability. As Jason’s disability advances, giving him less and less independence of movement, he becomes more and more determined to maintain his intellectual, artistic, and relational independence. This film moves from “I” to “we” because it is addressed directly to DaSilva’s young son, Jase. It documents the loving family established with Jase, Jason, and his wife Alice Cook. It also honestly tackles—from Jason’s perspective—the breakup of their marriage due in part to his increased need for constant care.
Those obstacles manifest within the film primarily through disease and distance. First, of course, Jason’s disease, and his need for constant care, limits his ability to spend quality time with Jase (and Alice). In a couple of heartbreaking scenes, we witness Jason staying back on the edge of a park because his power chair will struggle to cross the muddy terrain. He has to settle for watching from a distance as his son plays. Soon, that distance becomes much greater, as Jason and his wife separate, and she moves with Jase from New York City to Austin, Texas.
The film is filled with poignant moments, but the most emotional of them are those when Jason addresses his son directly, when we see them connect eye-to-eye, or when they are able to do something together, like Jase riding in Jason’s lap in his power chair down a sidewalk or across a room.
As Jason explores the possibility of his own move, he learns that Texas (along with many other states) will only fund nursing home care for a person with his level of constant physical care. He tries it for the sake of being closer to Jase, but ultimately cannot live this way and returns to New York, where 24-hour in-home care and its accompanying independence are funded by his Medicaid dollars.
This is not just Jason’s story, however, or even that of his family. In checking out the Medicaid rules in Texas, he documents the confusing variety of ways different states implement this funding for people with disabilities. He does so by talking with local advocates and officials, pointing toward the apparent subject of the last film in this trilogy, When They Walk. Presumably, that documentary will pay even more attention to the community around and beyond Jason.
Another example of this “looking beyond” is the section of the film on AXS Map, the program DaSilva and his wife started to document genuine physical accessibility in urban areas worldwide. Rather than focusing exclusively on his own obstacles, or refusing to go out because of them, DaSilva started a project that continues to collect and share real-time, on-the-ground information about how everyone can access particular neighborhoods, events, and businesses.
Laying out this variety of emphases demonstrates what could be seen as a weakness of the film, but which I experienced as ultimately positive: there is a lot going on here. There is the father’s love letter to his son, documenting their experiences in ways that both can benefit from going forward. There is the struggle with the bureaucracy of disability, which often dehumanizes those who need it most. And there is the direct advocacy for all people—particularly disabled people—to live their best lives, just as each of us wants to do.
What makes this combination work is DaSilva’s gentle smile as he rolls through and around each scene; something you can sense in his script and cinematography as well. Moments of tension, anger, and frustration are shown in truthful reality (such as the day when Jason sits on the curb watching his wife and son leave for a new life—without him—in Texas). But DaSilva’s soft baritone narration guides us, and we feel included in this intimate family story all the way. We are left anxious to participate by taking our own next steps toward full inclusion in our neighborhoods and spheres of influence.
Andrew Ryder is a Professor of Theatre at Seattle Pacific University and proud father to Braden (14) who plays trombone, wrestles, and loves driving games on Xbox, and James (16), who loves Broadway musicals, dancing, reading, and happens to have Down syndrome.