Jason DaSilva was walking with a cane by the time he was 26. Over the next seven years, he would start using a walker, a wheelchair and finally, a motorized scooter.
DaSilva, who was diagnosed with primary-progressive multiple sclerosis when he was 25, is the filmmaker and subject of his own POV documentary When I Walk, premiering Monday, 10 p.m. ET on PBS. The film spans seven years of DaSilva's life after he is diagnosed, following him through his first wheelchair to his marriage to co-producer Alice Cook.
DaSilva's filmmaking career was just taking off when he was diagnosed. He had a documentary on Japanese internment in WWII and four short films under his belt. MS put a temporary stop on his career — his vision was starting to deteriorate and his curling hands made it difficult for him to hold a camera. Dealing with frustration from his worsening condition and the realization that New York City was largely inaccessible to the disabled, DaSilva decided to turn the camera on himself.
"I want (the film) to bring more awareness to disabilities across the board," DaSilva told USA TODAY. "It's about me and MS, but it's really a universal themed story."
Multiple sclerosis is a disease of the central nervous system and can affect a person's ability to walk, stand and function efficiently, according to Rosalind Kalb, a clinical psychologist and spokesperson from the National Multiple Sclerosis Society. The disease attacks the nerve fibers in the body, causing difficulties with balance, fatigue and sometimes even mood and thinking, Kalb said. Doctors and researchers still do not know what causes MS.
MS affects everyone differently, Kalb said, and the vast majority do not become severely disabled. However, with primary-progressive MS, DaSilva's disease, the person's condition continuously worsens over time with no distinct relapses or remissions. There are currently no successful treatments, Kalb said.
"With my type of MS, moving is really hard and you just have to remain positive and hope for the best," DaSilva said.
After seeking religious guidance in his family's homeland of India and struggling to live independently in a city that wasn't disability-friendly, DaSilva's luck turned when he met his future wife, Alice Cook, at an MS support group in 2009. Cook does not have MS, but was there to support her mother, who suffers from it. Cook was hesitant to get into a serious relationship with someone with MS, but her father encouraged her, saying he was able to do it with her mom.
"I questioned myself, 'Am I OK with falling in love with someone who has such great challenges?' Cook told USA TODAY. "My mom and dad were very supportive, they told me, 'You have no idea what the future holds, so better enjoy it while you can.'"
When they got married in 2010, Cook became DaSilva's primary caretaker – a daily role that quickly became difficult for her to maintain. They were living together in a small apartment in New York and often found themselves isolated from socializing because of the many restaurants and taxi cabs that were not accessible to DaSilva's motorized scooter.
"For a while we didn't know how to tap the right resources and I was doing a ton of the work," Cook said. "I stopped working out, I was doing everything for him and never working."
Their situation inspired them to develop an app called AXS Map, which identifies wheelchair-friendly places in New York for those suffering from disabilities. DaSilva has become a vocal advocate for disability rights, now working on a second film that will focus on accessibility and how society treats the disabled.
"We're behind the times (for making New York City accessible)," DaSilva said. "It should have been done years ago. It's going to be the 24th anniversary of the Americans With Disabilities Act, but there's so much work to be done."
New York City is at least 20 years behind the rest of the country in terms of disability access, said Sid Wolinsky, co-founder of the non-profit Disability Rights Advocates. Documentaries such as DaSilva's can be helpful in spreading awareness of disabilities, but the changes fall on the cities to help the disabled lead independent and productive lives, Wolinsky said.
"The issue and problem (with disabilities) is not overcoming obstacles, it's the failure of a particular city to do what it's supposed to do for the disabled," Wolinsky said.
Although the couple are still adjusting to navigating the city with DaSilva's deteriorating condition and a 16-month-old son, they have a better system in place with more funding and resources coming from the state, Cook said.
DaSilva said they are still dealing with old and new difficulties because of his MS, but making the film and meeting Cook have helped him through his condition.
"The…film is about triumph over tragedy," DaSilva said.
When I Walk premieres June 23 at 10 p.m. EST on PBS.
Four Types of MS
- Relapse-Remitting: People experience relapses, or attacks, of worsening neurological functions followed by periods of partial or complete recovery.
- Primary-Progressive: People experience a slow but continuous worsening of their disease from the onset, with no distinct relapses or remissions.
- Secondary-Progressive: People experience an initial period of relapsing-remitting MS, followed by a steady worsening of the disease with or without occasional flare-ups, recoveries or plateaus.
- Progressive-Relapsing: People experience a steadily worsening disease from the onset but have acute relapses, or attacks, with or without recovery.