Jess Rogers
Editor’s Note: This post marks the first of several pieces contributed to the Matinee by Jess Rogers, formerly of Reel Insight. This is her first year covering the Hot Docs festival, and I’m very excited to be bringing you her reactions. (RM)
Sometimes you have to see yourself reflected in the eyes of others before you can begin to understand who you really are.
When Jason DaSilva went on vacation with his family, he didn’t know a harmless fall would change his life. For Jason – a documentary film maker, living in New York City – that fall also began his journey with primary progressive multiple sclerosis (PPMS). Because this degenerative neurological disorder might mean he couldn’t continue being a documentarian, DaSilva turned the camera on himself and chronicled his own journey from able-bodied to disabled. WHEN I WALK follows the first 7 years of DaSilva’s journey understanding who he is with PPMS, what that means, and how to be a disabled person in New York City.
As DaSilva slowly loses the ability to walk, he travels to try to complete other documentary work, until it becomes impossible, and visits his grandfather in India. We see DaSilva telling his family about his illness – if all people reacted as well as his grandfather, our society would have a whole new outlook on disability. His mother also tries to assuage DaSilva’s concerns about living alone in New York City, though her words don’t always seem particularly comforting, given their focus on reality. Jason eventually must use a motorized scooter to get around, and despite NYC’s attempts to become more compliant with the Americans with Disabilities Act, there are still sidewalks to overcome, subways without elevators, and worst – not a single wheelchair accessible taxicab in all of New York.
Most motivated, creative people will take any opportunity to grow. DaSilva is no different. Struggling with the limits imposed by PPMS and the need to use a motorized scooter, DaSilva wants to help other people navigate NYC with ease, and put a little pressure on the inaccessible places to get set up for all. He works with some friends to create AXS Map – a crowd-sourced, interactive map though an app that shows the real accessibility options of various stores, restaurants, and public places around NYC. The benefits of this to both the disabled and their families cannot be understated, given the embarrassing struggles when it turns out to be barely accessible.
As we see Jason lose the ability to walk, he seeks a community, and meets Alice with her own personal connection to MS. Thankfully, Alice also wants to understand what life is like for Jason, and they begin dating, eventually having a beautiful, differently-abled wedding ceremony (the bride and groom are seated while taking their vows) and scootering off to wedded bliss, and attempts to have a family. The connection between Jason and Alice is one of the best parts of this film. It’s not gushy or overly dramatic, but instead just shows the inside of a marriage – the struggles of helping Jason get dressed, their problems conceiving, making the documentary, and just being a couple that considers each other. It inspires as much as Jason’s personal struggles.
As a film, WHEN I WALK takes us through a Jason’s life with surprising clarity – using animated art drawn by DaSilva himself to indicate a date and give us a sense of the direction of the film. One of the many things that PPMS takes from DaSilva over time is the ability to make most of the art he previously could, and the film is littered with his art, and overall artistic vision. By using these cue cards DaSilva makes a film that is chronicling a long period of time during which small, but important changes take place, but we feel it the way DaSilva must have – going from walking to knowing one day you cannot lose your legs.
While those daily changes in his physical abilities would be minor to an observer, the changes are really as drastic as one scene to the next. Helping those around him, and the film’s viewers as well, DaSilva wants to help others understand what it is like to go from able-bodied to disabled, and does it with incomparable ability.
Watching DaSilva see himself through our eyes as film viewers (yes, I’ve gone a bit metaphysical here), WHEN I WALK provides its audience with a chance to examine how they see themselves. If you leave thinking, even for a moment, about what it might be like to live with a chronic, degenerative illness, this movie will have succeeded.
WHEN I WALK plays Hot Docs 2013 tomorrow, Friday April 26 – 9:30pm at TIFF Bell Lightbox. It plays The Lightbox twice more after that. First on Saturday April 27th – 2pm, and again on Saturday May 4th at 1:30.