(Photo credit: Long Shot Factory)
Mark your calendars and set your alarms. On Monday, June 23, 2014, PBS stations throughout the country will premiere When I Walk, an honest, unflinching, yet heartfelt, look at the experience of MS through the eyes of accomplished filmmaker and director Jason DaSilva and his family. I had the honor of previewing When I Walk last summer and believe that it stands out as a testament to strength, hope, humanity, and resilience.
When I Walk, premiered at the 2013 Sundance Film Festival to rave reviews. It opens the 2014 Point of View series on PBS on Monday, June 23, 2014 at 10PM and will be available for streaming through July 23, 2014. When I Walk (2013) is Jason’s 3rd feature-length film following Lest We Forget (2003) and From the Mouthpiece on Back (2008).
Check PBS.org for local listings.
By the age of 25, Jason DaSilva had already demonstrated his skills as artist, activist, storyteller, and filmmaker. A world traveler and multicultural artist living in North America, Jason prefers to turn his camera toward places and concerns that are often mistakenly or intentionally swept aside and to bring those issues into the light. His first short film Olivia’s Puzzle (2001) premiered at the 2003 Sundance Film Festival, received an Oscar nod, and was broadcast on HBO and PBS/POV in 2004. His next two films in the series, A Song for Daniel (2005) and Twins of Mankala (2006) also aired on PBS/POV.
Only months after Jason had been diagnosed with primary progressive MS, a turning point was captured on film during a family day at the beach. Jason’s legs gave out and he fell to his knees in the sand. Falling had become a somewhat familiar experience, but this time was different. This time, Jason couldn’t get up by himself; he needed assistance while he laughed at the ridiculousness of the situation. Jason’s MS was becoming visible to the outside world.
What does MS look like? Aside from outward signs of disability that primarily affect mobility, what does MS look like inside the person? I’m not talking about brain tissue as seen on MRI scans, I’m thinking of what the journey of having MS looks like and feels like to the individual and his/her family. That’s not something which can be captured in a single interview, magazine article, or cameo in a TV show.
After that day on beach, Jason decided to turn his camera toward himself and chronicle the relentless effects of the disease in an unflinching, uncensored manner. When I Walk covers Jason’s first 7 years living with MS, as he goes from being wobbly-legged on the beach, to using a walker in public, to relying on a scooter full time.
Jason exposes himself, heart and soul, with an honesty that you don’t often see on screen. We experience the physical and emotional roller coaster as MS begins to affect Jason’s vision and take away the use of his hands, while Jason searches for answers and possible cures. We witness the joy as Jason finds his soulmate and they get married and begin a family together. We can also hear the dark sadness as Jason explains that he couldn’t go with his wife to the hospital when she miscarried because accessible cabs were not available.
When I Walk may make some people uncomfortable in its frankness as it reveals the emotions of being trapped inside a body which increasingly fails the occupant. However, it isn’t a gloomy, woe-is-me tale. When I Walk captures the joy of living in the moment and is a testament to courage, love, and the human spirit. We finally get to see what MS looks like on the inside for one young man and his family struggling with MS.
In creating the film, Jason says that being forced to hand over the camera to others as his vision deteriorated was difficult and the most frustrating part of making the film, but it led to discovering a new focus in filmmaking.
“I used to have total control over the camera and I was a meticulous shooter, so you can imagine that trying to give on-the-fly lessons in visual composition and camera exposure to my mother was torture! The beautiful cinematography of my past was sacrificed, and capturing emotion became my priority. I found a new love for the expression of emotion, the subtlety of story and quietly compelling moments of human experience.”
Jason and his filmmaking partner and wife Alice Cook are working on a new project. They have developed AXS Map (access map), a crowd-sourced tool for sharing reviews on the wheelchair accessibility of businesses and places. AXS Map is available online or via mobile web, as well as Android and iPhone applications. To learn more and start mapping, visit www.axsmap.com.
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