Twenty-four years after the Americans with Disabilities Act was passed, people with disabilities are still struggling to obtain equal rights, and the area of accessibility continues to be a major issue. This truth became very apparent to New York City resident Jason DaSilva after being diagnosed with Multiple Sclerosis (MS) at the age of 25. However, Jason has been very proactive in trying to make changes that could, in time, significantly improve things for people with disabilities on an international level.
Jason was an up-and-coming documentary filmmaker at the time he was diagnosed with MS. While on a family vacation in the Caribbean, and just a few months after learning about his disease, Jason fell down and could not get up. Shortly afterwards, with his family’s encouragement, he decided to document his challenges through film. He created the documentary “When I Walk,” which followed his plight with MS over the course of seven years. Viewers witness the changes to Jason’s body and his struggles with day-to-day activities as he moves from being abled-bodied to using a walker and then a motorized scooter.
“I wanted to capture this transformative experience—becoming a person with a disability—because I hadn’t seen it done before, and people need to see how a degenerative disease impacts the lives of those living with it,” said Jason. These physical changes created huge challenges that caused Jason to contemplate whether to complete the film. “It was around the third or fourth year that I questioned whether I should continue,” said Jason, who credits his wife, Alice, for keeping him focused and energized.
“When I Walk” became an official selection of the 2013 Sundance Film Festival, while also winning the Best Canadian Feature at HotDocs 2013. It was selected to kick off PBS’ POV series of documentaries and aired on June 24 on the Public Broadcast Service channel. The film can be viewed on the PBS website through July 23. Jason’s film credits and awards do not stop there: they include, among others, the full-length documentary film “Lest We Forget,” which he directed, and the short film “Olivia’s Puzzle,” which premiered at the 2003 Sundance Festival and qualified for an Academy Award.
A crowd-source approach to accessibility
While Jason was becoming more mobility-impaired and in need of a scooter, he became frustrated with the lack of accessible stores, restaurants, and other establishments in New York City. In 2009 he created AXS Map, an online and mobile app that allows individuals to search for accessible establishments. The platform is powered by users, some with a disability and others without one, who support the application by providing accessibility ratings on entry ways and bathrooms of public establishments.
“I realized there was an essential need for a centralized database, since I had been spending so much time looking for accessible places,” said Jason. “The database will ramp up this summer with a number of new and enhanced features around what we’re terming ‘Map-athons.’ These events will be spearheaded by large numbers of individuals and teams in different cities going out to ‘map’ the accessibility of establishments. Individuals will be able to compete against one another, raise money for nonprofits by having people sponsor their mapping activity and much more.”
While any establishment that is identified by Google can be mapped, New York and Toronto currently have the most in-depth and accurate data in the AXS Map database, as the result of “mapping days” in those cities where large groups of people gathered to rate establishments. However, Jason wants to have other cities, including ones outside of North America, get involved and support the accessibility rating system.
While AXS Map is a great vehicle for providing awareness about establishments that are accessible, much more needs to be done on a broader scale, and Jason is pushing for changes within the next 10 years. “I would like to see all establishments and locations become accessible and 100 percent of the transportation system completely accessible,” said Jason. “All New York City buses are accessible, so why can’t we do this for every taxi and the full subway system? Other cities have done this, so I won’t be satisfied until we get 100 percent accessibility in this area.”
Jason is keenly aware of the bureaucratic challenges that come into play when major changes are proposed. “It’s time for the powers that be to stop being greedy and start putting money toward projects that will truly help society and humanity,” said Jason. “A lack of money is just an excuse. For example, elevators have existed since Roman times. Now, centuries later, many locations don’t have elevators even though an investment in this area would benefit society for generations to come.”
Jason’s commitment to shedding light on discriminatory practices against people with disabilities has not gone unnoticed. In February, he received the prestigious 2014 Paul G. Hearne Leadership Award, which is given out by the American Association of People with Disabilities, recognizing “emerging leaders in the national disability rights movement.”
Through “When I Walk,” Jason has created a platform to illustrate the challenges that people with a significant disability go through on a day-to-day basis. Now with AXS Map, he has shown his resolve and ability to hone in on a major issue for people with disabilities—the lack of accessibility. “It’s essential that we get people out to review establishments and get that information into the system,” said Jason. “AXS Map can potentially be a very powerful platform, but it’s all dependent on the users and their engagement.”