DIY Culture – Making Life More Accessible

AMayor and the Commissioner of the Mayor’s Office for People with Disabilities Victor Calise have put together a big program of events called ADA25NYCs part of ADA25NYC, last month a group of smart innovators with a wide range of interests got together to talk about assistive technology in the next 25 years. The event was held at New York University’s MAGNET (Media and Games Network) space in Downtown Brooklyn, a huge tech studio where students and faculty focus on the “intersection of culture and technology.”

After a welcome by Commissioner Victor Calise of the Mayor’s Office for People with Disabilities, panelists introduced themselves. Among them were:

  • Holly Cohen, co-founder of DIYAbility, New York City’s accessible maker space which teaches people with disabilities, families and health care professions how to make assistive technology. DIYAbility is also an approved institution for occupational therapists to gain continuing education credits.
  • Neil Giacobbi of AT&T, who works with NYU on the ConnectAbility Challenge, a worldwide contest for assistive technology innovation.
  • Zach Lieberman, an artist and educator who runs the School for Poetic Computation, where, among other projects, they have created EyeWriter, a tool developed in collaboration with Los Angeles graffiti artist Tempt1, who has advanced-stage ALS. The tool allows him to draw with his eyes.

While the focus was on assistive technology, the conversation quickly moved to cost.

We’ve all been wowed by cutting edge assistive technologies like bionic limbs and robotic prosthetics costing hundreds of thousands of dollars – if they are available at all – that are not covered by Medicaid, Medicare or other insurance. Neither are a lot of less expensive assistive devices that are not considered solutions to a “medical need.”

DIYAbility’s Holly Cohen is an occupational therapist who specializes in assistive technology. As she explained at the forum, “There’s no ‘medical need’ for an adaptive TV remote or light switch. I’ve had people say, ‘Well, that’s only $40.’ But for someone who’s on disability, who’s not working, $40 is a lot of money.”

EyeWriter is an example of an inexpensive, open-source tool that offers an alternative to devices that can cost thousands of dollars. As Lieberman put it, “EyeWriter is basically a set of instructions for how to build your own eye-tracking system with a combination of things you can buy on Canal Street.”

With EyeWriter, Tempt1 was able to go back to creating his graffiti, which has been projected onto buildings in Downtown LA. He describes being able to draw for the first time in years as feeling like “the first time taking a breath after being held underwater.” And EyeWriter’s applications are as unlimited as a user’s imagination.

Cohen’s DIYAbility, which is here in New York City, empowers people by teaching them how to adapt everyday items to meet their needs.

“I see adults and children of varying disabilities,” she said. “It could be anything ranging from someone with ALS to cerebral palsy, muscular dystrophy, multiple sclerosis. They can’t access lights. They can’t use a TV controller. They can’t move a mouse. Sometimes someone will say to us, ‘Well, it’s exercise for me to turn the light on.’ But it’s not exercise if it takes you half an hour and you might fall. And so we ask, ‘How can we facilitate their use of the technology?’

“Now keep in mind not everything is a high tech solution. Sometimes low tech meets the need. What we are facilitating is independence. We make people aware of what is available, how do make things accessible at a lower cost. Not everything has to be very expensive to facilitate independence.

“We help people with mixed abilities learn what they can do for themselves, how they can make their own technology, create solutions and own the process. And we hold workshops for people in health care because, honestly, a lot of folks in my field aren’t doing technology.”

Unsurprisingly, AT&T’s Neil Giacobbi is a big believer in communication. “So many of our government agencies, and the decision makers are in silos. My guess is that people who determine eligibility rules for Medicare and Medicaid probably aren’t aware of the scalability and the innovation that’s happening.

“One of the things that we’ve learned with the ConnectAbility competition is that you can’t design and build and test technology for people with disabilities without people with disabilities there creating the ideas and testing them and using it themselves. We’ve also seen how families confronted with these enormous costs of assistive technologies have hacked and used apps that were not designed for people with disabilities to address needs.

“The market is getting ahead of the designers and the founders. There’ll be a natural attrition of the decision makers, the federal bureaucracy will just age out, and there’ll be people who grew up in the mobility and the digital revolution and they’ll know intuitively how to address people with those needs. It could take a decade or it could take a few years. And the funding streams will change because it makes sense for the taxpayers.

“So much of these solutions, ultimately, the customers are going to drive it. They’re going to drive the solutions because if they’re hacking today these amazing solutions that could be bought for 25 bucks, that’s a story to be told.”

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