Crippling Multiple Sclerosis Takes Filmmaker on 'Wild Ride' to Be Independent

PHOTO: Jason DaSilva

Jason DaSilva was trapped in his apartment -- and in his own body -- when his wife Alice Cook was rushed to a New York City hospital in 2012 when her miscarriage bleeding would not stop.

Unable to walk and confined to a wheelchair with multiple sclerosis, DaSilva couldn't get a taxi cab that was handicapped accessible. So he sat alone in his Brooklyn apartment, unable to support the woman he loved.

"She had lost too much blood," DaSilva told "Everything just fell apart. It was horrible. We knew it was happening long in advance, but there was no way for me to get to the hospital. It was so surreal. She had to get in a cab and get there herself without me."

  • Primary-progressive multiple sclerosis differs from other forms of MS.
  • The disease course has no distinct relapses.
  • It is characterized by a steady worsening of neurological functioning.
  • MS is treatable, but not curable.

DaSilva, a Canadian filmmaker who has traveled to Africa, Iraq and India for his stories, was diagnosed with progressive primary multiple sclerosis at age 25, a disease that has advanced so virulently that today, at only 35, he has lost his ability to walk, use his hands to eat and, to some degree, even his vision.

DaSilva decided to chronicle his physical decline in a film, "When I Walk," a documentary that takes the viewer from the moment his legs collapsed and he fell on the beach in 2006 to the present day as he champions the rights and needs of the disabled.

He says in the opening of the film that his diagnosis and struggle for independence has been a "wild ride."

Artist Patricia La-Dorsey Gives A Glimpse Into MS Laden Life
Artist Patricia La-Dorsey Gives a Glimpse Into Life With MS

"You really don't have the same sense of freedom you once had," he told "I didn't realize that my life would only be limited to a few things I could actually do. It's very isolating and lonely as well."

"I never thought about people in wheelchairs going up and down stairs and taking cabs." -- Jason DaSilva, filmmaker

The film, which was an official selection this year at the Sundance Film Festival, has its theatrical release on Oct. 25 in New York City and a Nov. 1 in Los Angeles.

DaSilva said that when he was able-bodied, "I never thought about people in wheelchairs going up and down stairs and taking cabs. Only after it happened to me, did my eyes get opened up. The weird thing is that everyone understands the problem, but the changes required take so long. I want to get the word out to the mainstream."

PHOTO: Jason DaSilva and Alison Cook
Courtesy Jason DaSilva
PHOTO: Jason DaSilva and Alison Cook

DaSilva has primary progressive multiple sclerosis, which differs from other forms of MS because the disease course has no distinct relapses, according to the National Multiple Sclerosis Society. It is characterized by a steady worsening of neurological functioning and is incurable.

As DaSilva spoke to by phone from a film event in Vancouver, he said he continued to have transportation issues.

"It's the same situation," he said. "These things exist and they need to change. Even on this trip I was panicking on how to get to the airport in a car service that could take my wheelchair."

In the documentary, DaSilva is at first able to use just a cane to get around, but is soon reliant on a scooter to go about his filmmaking. He wants to continue living in vibrant New York City, but is hampered when his disability prevents him from gaining access to restaurants and other older buildings that have been granted exemptions from laws requiring wheelchair accessibility.

The subways are "treacherous," he said.

In the seven years it took to make the documentary, he created AXS Map, a mobile app for smartphones that maps handicapped accessibility in cities like New York and can be used not just by those with mobility challenges but the visually and hearing impaired.

The mapping project -- a crowd-sourced platform that is a kind of "Yelp for disabilities" -- continues throughout other cities for the 13.2 million in North America with mobility impairments.

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