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You Shouldn’t Have to Crowdfund Your Wheelchair

At the Chicago Abilities Expo, the latest technology in wheelchairs and beyond will astonish you. But there’s a fundamental tension between innovation and cost, with people’s independence on the line.

By David Perry


A woman in the WHILL model A at the Mitsukoshi department store in Tokyo in September 2014. (Photo: Yoshikazu Tsuno/AFP/Getty Images)

“It’s coded.” At the Abilities Expo in Chicago, these words were routinely uttered as if they had magical properties. They indicated that a piece of medical equipment had been approved by the Food and Drug Administration and been “coded” as a specific type of device within the Product Code Classification Database. Such approvals make it possible for Medicare, Medicaid, and private insurance to pay for the device — possible, but not always mandatory.

Abilities Expos take place around the United States seven times a year, with an eighth just added in Toronto — the organization’s first-ever Canadian expo. The exhibitors include dozens of companies who sell accessible vans and SUVs, wheelchairs, lifts (to help people get out of bed), canes, some nifty robots, “tank” wheelchairs with treads, super-comfy pillows, a better straw for a cup attached to a chair, orthotics, and one giant exoskeleton. I got to experiment with a device that allowed me to control a computer with my eyes alone — thanks to AbleGamers, I could blast asteroids as they spun toward planet Earth just by looking at them. I watched performances, met with advocacy groups, and watched people with disabilities and their families make friends and network.

While the heart of the exhibit hall feels much like any other trade show, there’s ample space for education and advocacy. Plus ice cream.

And so that’s the challenge. Technology surges forward, genuinely transforming the ways that people with disabilities can engage with the world. Bureaucracy and cost, though, throw up new kinds of obstacles.

I attended the expo not to be wowed by the latest in assistive technology, but to learn more about how the industry — especially for big-ticket items like powered wheelchairs — presents itself to consumers. It’s clear that technology is rapidly making the world more and more accessible in theory, even as in practice many people with disabilities don’t have the cash to take advantage of these technologies. There’s a fundamental tension between innovation and cost, with people’s independence on the line.

Take the case of Dominick Evans. Evans is a well-known filmmaker and disability advocate, especially visible through his role in founding the #FilmDis Twitter chat that focuses on disability and representation in the media. One day, Evans’ lift broke, and he found himself literally trapped in bed. Medicare, his primary insurance, wouldn’t buy him the ceiling lift he needs — just a floor lift which, he tells me, routinely smashes his feet. Medicaid will buy ceiling lifts, but the company that makes the proper lift “refused to bill Medicare, because they knew it would get a denial. However, without a denial of primary insurance, Medicaid cannot submit to pay.”

While trapped in this bureaucratic nightmare, Evans’ body was suffering from being bed-ridden, so he decided to launch a crowdfunding venture to just buy the lift outright. “I have a progressive muscle disability,” Evans says, “a neuromuscular disability,” which was rapidly getting worse thanks to his immobility, The campaign worked (disclosure: I was a donor!). Alas, Dominick then discovered that his wheelchair — just four years old but plagued by problems — isn’t functioning correctly, so he’s still stuck, grimly working through another bureaucratic logjam again while seeking more support.

The only unusual part of this story is that Evans, thanks to his position as a visible and well-loved member of the disability rights community, was able to fundraise his way to partial success. He’s one of dozens of stories I’ve heard recently of people who have some form of insurance coverage, but who nevertheless experience constant frustration. It’s not a frustration about being disabled or using a wheelchair, but rather about the human-driven systems that limit access to working technology. In many ways, this is a classic example of the social model of disability. Under the social model, people aren’t chiefly disabled by medical conditions, but by a society designed for only a narrow range of bodies and minds, and there’s no shame to being in a wheelchair.

Lack of shame runs counter to dominant narratives about wheelchairs, especially in our culture. The phrases “wheelchair-bound” and “confined to a wheelchair” still regularly appear in news. In pop culture, we’re told that a loss of mobility is a fate worse than death — take the recent movie Me Before You, which end with the character played by Sam Claflin killing himself rather than living with paralysis, despite being fabulously wealthy and having Emilia Clarke as a love interest.

Actual wheelchair users, though, speak about their devices very differently. I asked a few dozen individuals how they feel about their chairs, and not one relied on words like “confined” or “bound.” They routinely described the chairs as extensions of their body. The most common word in these conversations was “freedom.” For example, Emily Ladau, who writes on disability, told me: “My wheelchair is quite literally life-sustaining. It is my freedom.”

And yet, as parts of the body go, they are expensive and vulnerable.

Take WHILL for example. The company has produced two versions of a powered wheelchair that boasts simple controls, a sleek look, and front wheels that turn the chair without spinning (vastly improving turning radius). WHILL’s Model A even recently appeared as the personal mobility device of Lex Luthor in Batman v Superman. I approached their shiny booth with skepticism, but left convinced I’d seen the powered wheelchair design of the future. The salesman compared their product to Tesla, looking to have the same disruptive effect on wheelchairs as the electric car might have on automobiles. It’s an apt comparison, if only because, as with Tesla, you probably can’t afford a WHILL chair. Prices start at $13,995. The “Model M” is approved by the Food and Drug Administration as a wheelchair, but it’s not coded. Insurance won’t cover it.

ReWalk, on the other hand, is the $77,000-and-up exoskeleton that can be approved by some health-care insurance providers — assuming you have the right condition. The company’s salesman, in fact, didn’t really want to talk about price, comparing it to the costs you get on a hospital bill that have no relation to what you actually pay (assuming you’re insured). The exoskeletons have just been approved for personal use, but will most likely first appear in rehabilitation facilities. In fact, after ReWalk announced the product, the company struggled to find a market, before winning approval from the Veterans Administration for use in helping injured soldiers. ReWalk brought a U.S. Army veteran to the expo to underscore its patriotic purposes, one of the many visual links between military service and disability on display. Self-identified veterans were few, though — most of the attendees were either elderly or families.

One family of five, for example, came from Louisiana. They had attended an Abilities Expo in Houston the year before and were on their way to the National Spina Bifida conference in Minnesota. Their youngest, whom I’ll call Michael, had a very cool standing wheelchair that looked jury-rigged — all hard metal and bolts. He stood longingly examining the latest standing “Action Trackchair,” a powered mobility device with treads that allow it to cross terrain. It costs over $15,000. Michael knew he’d never get one, but his mother told me there had been some discussion with a local hunting club about collectively purchasing one that people could share, a practice already underway in Wisconsin. I shadowed Michael and his family for a few hours, unintentionally trailing behind them as I made my way through the show, struck repeatedly by how he interacted with his siblings. They played soccer with wheels and feet, made art with Zot Artz, a studio that creates adaptive art tools of all shapes and sizes, and generally got in the way, as kids do. His mother told me that the chair Michael was using was actually much too small for him, and they were trying to figure out what to go to next.

It’s not just wheelchairs. When my son (now nine) was not quite three, he was diagnosed with speech apraxia — a condition fairly common among people with Down syndrome — and prescribed a dedicated communication device that cost about $3,000. The State of Illinois paid for it with relatively few questions. The device was clunky, analog, and required a lot of literal cutting and pasting. To make words, you had to print strips of paper with images, cut them into shape, laminate them (we still have the laminator we bought, sitting unused in the basement), insert them into the device, and then record your voice for each word. We tried it for a few months of constant frustration, then reached out to a donor. He bought us an iPad and a $250 application called ProloQuo2Go that we now have installed on all our devices. It’s been great. Not only does it require no crafting, but the program grows in complexity with the child. I expect my son to be able to use this kind of device for as long as he needs it, whipping out a phone or tablet, loading up this or a related app, and being able to talk to anyone, anywhere, about anything.

iPads, we were told at the time, were absolutely not covered by any insurance, because a child might use them to play games or watch movies, rather than for speech technology. Without that donor, it might have been years before we could have provided our son with access to the kind of technology he’ll actually find most useful.

And so that’s the challenge. Technology surges forward, genuinely transforming the ways that people with disabilities can engage with the world. Bureaucracy and cost, though, throw up new kinds of obstacles. How we get the technology to the people who need it, beyond relying on kind donors and crowdfunding, still looks painfully out of reach.