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Disabled Do-It-Yourselfers Lead Way to Technology Gains – The New York Times

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Disabled Do-It-Yourselfers Lead Way to Technology Gains - The New York Times

This article is part of a series exploring how the Americans With Disabilities Act has shaped modern life for people with disabilities. Share your stories or email us at ada@nytimes.com.

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Technology is changing the ways that disabled people interact with the world; perhaps more important, it’s also shifting how the world interacts with disabled people.

As the 30th anniversary of the Americans With Disabilities Act approaches on July 26, many leaders, designers and scholars in the disability community say that they aren’t excited by stair-climbing wheelchairs, mechanical exoskeletons or brain-controlled prosthetics. They are drawn to innovations that embed accessibility into everyday technologies and the spaces that we all share. Also, they want people to stop trying to solve problems that don’t exist.

Mark Riccobono, who lost his sight to glaucoma as a child and is president of the National Federation of the Blind, says that blind people generally love their white canes, a simple and effective piece of technology. “A couple times a year someone comes to us and says, ‘We have this great new idea for how to replace the cane!’ ” he said. “We try to be objective, but no. You’re trying to solve a problem that’s not a problem.”

Disability technology can be so quotidian that nondisabled users don’t even notice. GPS and spell-check, so ubiquitous for so many people, are technologies that assist me with dyslexia. Smartphones, where I find my GPS, may be the most powerful accessibility devices in history, especially now that voice control offers an alternative to touch screens for Blind and low-vision users, or people without the manual dexterity to operate them. (No interface is perfect, however. Some people might actually want buttons over sleek screens. And affordability remains a problem.)

As hubs for accessibility programming, though, smartphones drive down costs. For example, Fred Downs, who lost his left arm when he stepped on a land mine during the Vietnam War and is now an advocacy director for Paralyzed Veterans of America, says that in 1980, screenreaders cost up to $50,000 a unit and could read one page at a time out loud. Now every computer, phone and tablet can read nearly any screen. Smartphones provide navigation, manage hearing aids, run speech apps and can even drive a wheelchair.

Innovations build off these capabilities, so now, for example, companies are working on mapping interior spaces to help people navigate them the same way detailed exterior maps currently do. Those who are disabled have long struggled to win the right to work from home; these days, technologies like cloud computing and video conferencing are used everywhere and widely accepted at least for office jobs, especially as the coronavirus pandemic alters so many workplaces. Disabled employees who do not wish or are not able to go to an office can now more easily interact with their colleagues.

Disability-related technologies are not just growing through incremental adjustments to existing products; transformative ones are on the horizon. Rory Cooperis director of the Human Engineering Research Laboratories, sponsored by the University of Pittsburgh and the U.S. Department of Veterans Affairs. He was paralyzed because of a spinal-chord injury in 1980 and has used a wheelchair since then. Now he is improving mobility devices, including wheelchairs and scooters, by adapting components designed for vehicles and drones. Mr. Cooper says he can take new batteries, motors and algorithms from other industries and build “a much lighter chair with the same capabilities.”

He has developed a waterproof chair that runs on compressed air, originally for a wheelchair-accessible water park. Water parks are fun, but more important, the innovation will make it easier for wheelchair users to go out in the rain. Meanwhile, makers of self-driving cars are now consulting not just Blind users, who have long been involved, but people with myriad other disabilities, including those in wheelchairs, who would need to be able to roll into the vehicle.

At the New York Public Library’s Dimensions lab, Chancey Fleet, who is Blind, is working with a team to make spatial learning easier for blind people and to provide access to information — part of the library’s core mission — to those who can best get it through touch. Visitors to the lab in the Heiskell branch of the library in Manhattan are invited to make 3-D printed objects and tactile graphics, or graphics embedded with Braille and other textural elements to make their meaning legible by touch. Ms. Fleet is hoping to end what she calls “image poverty.”

She says as a Blind child, “I thought I was someone who didn’t have any aptitude at all in STEM, even though I did well academically.” But she later realized her problem was not with science and technology per se. ”Looking back, it seems as though I was a spatial learner,” she said. “If the images are there, it turns out that the aptitudes are there.”

Experts in disability and technology, like Ashley Shew, associate professor at Virginia Tech in the Department of Science, Technology and Society, says that the best of these projects emerge out of the DIY-culture so prominent within disabled communities. Too often, the biggest and most promising innovations may come with hidden barriers, like cost, maintenance and the need to customize them.

“We’ve been misled,” said Ms. Shew, who identifies as multiply disabled and uses hearing aids and prosthetics. “The public perception is very celebratory about new developments,” but this “completely looks over issues of maintenance and wear. People think you’re given this item once and then it’s fixed for all eternity.”

Not only are devices like prosthetics and hearing aids often not covered by insurance, but expert care is hard to find. Ms. Shew, for example, travels four hours for leg prosthetic care. Meanwhile, too much technology is designed around a perception of what’s normal. For example, arm prosthetics are often designed with five fingers, a hand, but Ms. Shew says, “A lot of arm amputees don’t necessarily want” that but instead would like a bike-riding arm or a chopping arm.

Maintenance isn’t the only ongoing issue for users of disability-specific technology; intellectual property law can restrict the ability of users to customize their devices to suit their changing needs. Ian Smith, a software engineer who is Deaf, has dwarfism and uses a power wheelchair, points out that too often disabled people are not permitted to tinker with devices because of trademark issues, negating what many call the right to repair. “You’re at the mercy of the manufacturer for upgrades and repairs,” he said.

Sara Hendren, who teaches design at Olin College of Engineering in Massachusetts and is the parent of a child with Down syndrome, illustrates the benefits of empowering disabled designers in her forthcoming book, “What Can a Body Do?” In it she introduces us to Chris, who was born with one arm. After being stymied initially in trying to change his infant’s diaper, he ultimately joined felt holsters to soft cords that he could attach to his shoulder. The baby’s feet rest in the felt, secure.

“The result is nothing that dazzle at some tech expo,” but it reveals, Ms. Hendren said in an interview, how the right technology can make the “world bend a little bit” toward the user rather than just bending the user toward a normative world. Ms. Hendren said that adaptive technology, the phrase she prefers to the more commonly used “assistive technology,” is not about helping, but about shifting both the body and the world into closer harmony. It’s not using tech to make things seem “normal.”

Bob Williams, policy director at Communication First, an advocacy group for people like him with speech-related communication disabilities, has cerebral palsy and uses a stand-alone device to produce audible speech. It was designed around 1990, and Mr. Williams is worried about obsolescence. Today, many nonspeaking individuals can use apps with speech tools built into tablets, smartphones and computers. “It’s a bridge” between disabled and nondisabled people, Mr. Williams says, because everyone can “relate to the technology.”

In my family, we’ve certainly found that to be the case, but not everyone does. My son, a white Midwesterner who is autistic and has Down syndrome, uses a speech app called Proloquo2go. There’s a default setting that mimics how he talks, but not everyone finds a voice that is fitting.

Meryl Alper, assistant professor of communication studies at Northeastern University, argues in her book “Giving Voice,” that this app creates inequality. Not only do many families have trouble with programming apps like this, but Proloquo2go doesn’t “have a single speech option in U.S. English in a voice that uses speech samples from an adult woman of color. The only one that is racialized is Saul, a ‘hip-hop’ voice.”

Over email, David Niemeijer, the chief executive of AssistiveWare, the company that makes Proloquo2Go, blames prohibitive costs in making new voices. He hopes upcoming collaborations among producers of text-to-speech technologies will lower those costs.

The lack of nonwhite voices in this app is one of many such examples, says Damien Williams, a Ph.D. student at Virginia Tech. Mr. Williams says that disability technology often reflects biases about race, gender and ideals of what is or should be “normal.” There are soap dispensers that don’t recognize black and brown skin, for example, and automated captioning can’t always handle accented English. Mr. Williams says programmers have to contend with assumptions about differences in race and class and need to include “underlying systems that are not based in outdated ideas about disability.”

For Ms. Shew, the Virginia Tech professor, the best way to ensure that this transformation continues will require centering the power — and the money — on disabled people as the initiators of innovation. “The future of assistive tech should be ‘cripped,’” a once-pejorative term that many members of the disability community have reclaimed, she said. “It should be bent, claimed, reclaimed, reforged, hacked, owned/controlled, made, swapped and shared by disabled people.”


David M. Perry is a journalist and the senior academic adviser in the History Department at the University of Minnesota.

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