Inside AXS Labs’ Mission to make the Real world a more accessible place to All disabled People
Two decades have passed since Jason DaSilva was diagnosed with multiple sclerosis (MS) at age 25. A filmmaker known for works such as 2013’s When I Walk, DaSilva explained during an interview last week he was “able-bodied” back in 2005 when doctors informed him of his MS diagnosis. He was living in New York City and began noticing problems with walking and blurry vision. DaSilva has primary progressive multiple sclerosis, or PPMS. It’s described by the National Multiple Sclerosis Society as “an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body,” adding “if you have PPMS, you will experience gradually worsening neurologic symptoms and an accumulation of disability [and] you will not have relapses early in the disease course. You also will not have remissions.” 10% to 15% of people have DaSilva’s type of MS.
“I didn’t know what to do,” DaSilva said of the aftermath of getting his diagnosis. “Then I worked on a couple more films, then turned it around and said, ‘Well, what I really should do is continue my career, but in a way that embraces the MS I have now.’”
What he chose to do was launch a nonprofit organization called AXS Labs. On its website, AXS Labs says its mission is devoted to “building tools, telling the stories of accessibility and inclusion through media, journalism, news and technology [and] [serving] people with disabilities through media and technology.” DaSilva told me his organization’s first project is the eponymously named AXS Map. The impetus for AXS Maps, is obviously accessibility; as a disabled person, DaSilva has long lamented the lack of maps which cater to the disability community. There are “all these maps from Google and Yelp,” but none truly dedicated to providing crucial inclusionary information on accommodations such as wheelchair access and more. DaSilva was resolute in his belief such a tool “needs to be done,” so that’s what he and his team did. AXS Map isn’t new, with work beginning in 2010 before launching to the public two years later.
“[AXS Maps] has been going ever since,” DaSilva said. “We have a big database now, but it’s been going since 2012.”
DaSilva reiterated the sore need for something like AXS Map to exist for the disability community and its allies. He again lamented how there are apps like the aforementioned Yelp, replete with listings and reviews of businesses near and far, but skimps on accessibility information for people like himself—and yours truly, for that matter. Even now, such information remains sparse, but DaSilva said the work is evergreen. AXS Map has grown considerably in 13 years, with the software reaching a point where “we have so many reviews… we keep going and creating new things.”
DaSilva shared an anecdote about living in Manhattan’s East Village and wanting to go to a bar or restaurant. A wheelchair user, DaSilva would venture out for the proverbial night on the town on Friday nights with friends only to sullenly discover a place would have stairs or steps, making it harder to get in, if at all. Many times, it would be downright impossible and the night would end prematurely because of inaccessibility.
“I said, ‘Well, this is obviously a need that needs to be dealt with from a personal perspective,’” DaSilva said. “But I realized it was [also] something that could help a lot of people with whatever they need in terms of accessibility.”
In a technical terms, AXS Map’s data is based on the Google Places API. According to DaSilva, “any place on Google is going to be available on [AXS Map] as long as they’re a business that’s registered with Google.” He emphasized the notion that AXS Maps stands to “provide another layer of information” which Google may not have, calling accessibility information “critical” for so many like himself and others. In fact, lots of disabled people have expressed gratitude to DaSilva and team for offering such an invaluable tool; DaSilva said people are excited to learn AXS Map exists and subsequently are excited to spread the good word about it to everyone else out there.
“It’s something that needed to be done, but there was no way for people to actually do it,” DaSilva said of the motivation to build AXS Maps. “That’s it. I saw something that I could pull the trigger on and get the word out there.”
He continued: “People really like that [AXS Map] exists. I get a lot of feedback from people who wouldn’t otherwise be able to go to places. They wouldn’t know if they’re accessible or not, so AXS Maps really helps.”
As to the effectualness of AXS Map to people’s everyday lives, DaSilva told me it boils down to two things. One, the software allows people to talk about whether places they know are accessible (or not). And two, it enables people to be explorers by pushing them to venture to new parts of their neighborhood or city. “Even if they go to a new city, there are some places they wouldn’t have otherwise known about,” DaSilva said.
In a broad scope, DaSilva said it’s his experience that an increasing number of businesses have become disability-friendly over the years. In New York City, he noted the bar is “certainly getting higher” for prioritizing accessibility—but caveated a big barrier is infrastructure. Most buildings there, he told me, are legacy and thus pretty old; this means their very construction means upgrading to make them “ADA-friendly,” as the colloquialism goes, is a slow (and expensive) process for city leaders and their budgets. But it isn’t an issue solely confined to New York, as DaSilva also cited other east coast metros such as Philadelphia and Toronto also slogging through relative inaccessibility largely because they, too, are older cities filled with older buildings.
However problematic buildings are, DaSilva finds people are keen to help him.
“They’re helpful as they can be,” he said. “They’re helpful… they tell me where to go to [and] tell me if it’s an accessible place. They tell me if they have another entryway or whatever the case may be. They do as much as they can do for me.”
Looking towards the future for AXS Labs, DaSilva said AXS Map in particular is more “database” than anything else. He’s scheduled to soon give a presentation to the United Nations on AXS Maps: how it works and how best to use it. His talk coincides with the UN’s Convention On The Rights Of Persons With Disabilities. Beyond AXS Map, he’s also poised to discuss how artificial intelligence can positively impact the lives of disabled people and how AXS Map fits into the ever-burgeoning era of AI. The technology, he added, has enormous potential to not only map accessible places, but help people in the community get to those places. What’s more, the “robots,” as DaSilva characterized AI, could go in and verify whether places are accessible or not.
