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Care Tactics
Hacking an ableist world
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Here is what doesn’t go viral: Ángel worked as a housepainter for decades but had a stroke three years ago that paralyzed the left side of his body. Now, his favorite spot is the recliner in his living room. From his perch, he can reach some essential items that he stores on a table to his right: a power screwdriver, painter’s tape, and a clipboard with paper and pen.

“I’d like to mount this new striker plate on the front door,” Ángel says. He transfers himself from the recliner to his wheelchair and leans over to pick up a small metal striker plate along with the roll of tape from the table. Using his right foot, he turns around and propels his wheelchair toward the front door. Then, he props the roll of tape between his knees in order to pull off a section. He sets the striker plate on the tape, pulls a little more while bracing it with his knees, and tears it off. Ángel wheels in closer to the frame and lifts the tape and striker plate onto the inside of the door jamb, pressing it into place. It stays there, mounted to the spot where he needs it. “Now, I just need to screw it on.” He wheels over, gets a screw from the table, and passes it through the hole in the striker plate so that it sits just inside the hole already drilled into the door jamb. “See?” Now, he’s set up to use the screwdriver with his “good hand.”

Here is what does go viral: braille decoder rings, sign-language-translating gloves, “haptic footwear” for blind folks, stair-climbing wheelchairs. In other words, a preponderance of innovations, unveiled to great fanfare, that purport to solve disability-related problems. While the press applauds the tech sector’s forward-thinking and sensitivity to the needs of underserved populations, the concerns of disabled people—voiced again and again and again—are disregarded. So much uncritical attention gets lavished on these seductive yet generally silly objects that the disabled design critic Liz Jackson aptly named them “disability dongles” in 2019. This concept was recently taken up again in a piece for Platypus coauthored by Jackson, along with Alex Haagaard and Rua Williams. In it, they argue that disability dongles generate feel-good content for brands that may be “promising in concept, but in actuality unattainable.” Indeed, they’re often just prototypes that designers have no intention of ever manufacturing.

In this way, disability is rarely meaningfully engaged, and efforts to build a more accessible world are abandoned in favor of high-tech Band-Aids designed to “fix” an individual person’s interactions with it. Meanwhile, disabled people develop and share hacks—which often don’t require high-tech anything—to MacGyver their way through daily life. I’m talking about ingenious practices that I’ve noted elsewhere, such as using a mortar and pestle to crush pills for a feeding tube that a plastic pill grinder couldn’t handle, or cutting a ring out of the opening of a sock and sliding it up to just below a knee to prevent skin irritation from a leg brace. In contrast to what gets churned out in glossy promotional materials for corporations and tech start-ups, disabled people find creative ways to make their worlds accessible every day.

Inaccessible America

In New Jersey, Bob, who only has the use of one arm after a stroke, has figured out many workarounds in the kitchen. He cuts rubberized mats to fit serving trays, allowing him to carry multiple items at once without fearing dishes and the like will slide around if he’s wobbly. He uses a battery-powered can opener which, unlike manual openers or the plug-in kind, only necessitates the use of one hand. And instead of an oven mitt, which requires use of another hand or appendage to wrangle on and off, he opts for textured silicone trivets as they’re easy to pick up single-handedly, are lightweight yet heat resistant, and have a strong grip so whatever he grasps doesn’t slip.

While the press applauds the tech sector’s forward-thinking, the concerns of disabled people are disregarded.

In upstate New York, Jon, who is disabled from the West Nile virus and has to spend a lot of time maintaining and building strength with exercise machines, modified his tabletop arm bicycle. He’s supposed to grasp the black plastic handles and pedal with his arms, but his grip is poor. So, to create traction, he repurposed some old physical therapy exercise bands. He cut them and wrapped them around each of the arm machine’s handles, securing them with painter’s tape. Now, paired with some mitts he acquired, he can actually hold onto them.

None of this ingenuity on the part of disabled people is new. As the historian Bess Williamson writes in her book Accessible America, the medical subspecialty of rehabilitation emerged in the early 1950s, when many disabled people were institutionalized. Through assistive devices like prosthetic limbs, doctors endeavored to “return” those physically disabled by accident or illness to “normal” so that they could go home. While living at home was generally far better than being institutionalized, doctors’ ideas about what disabled people needed were often incongruent with the realities of their daily life. As Williamson notes in a 2012 journal article, “Individuals with paralysis, missing limbs, weakened joints, or restricted breathing left the hospital for home lives full of physical obstacles.” Homes, daily-care objects, and appliances simply weren’t designed for disabled people, so they took to hacking—modifying inadequate medical devices, wrapping rubber bands around slippery doorknobs for traction, and making “mouthsticks” for typing and other activities. Williamson’s research points to another development: that many disabled people then began to share these hacks in advice columns of the Toomeyville Junior Gazette, a newsletter for polio survivors.

The need for these hacks—and their circulation—did not lessen as time went on. Though the Fair Housing Act was amended in 1988 to prohibit disability discrimination, regulations intended to ensure accessibility in new residential construction pointedly did not apply to duplexes, triplexes, or single-family homes. And the Americans with Disabilities Act of 1990, which addressed accessibility in public spaces, public transit, and the workplace, did not propose any methods for lessening discriminatory attitudes, nor did it apply to private residential homes. Unsurprisingly, developers did not subsequently go out of their way to build housing with the disabled in mind, and by 2011, less than 5 percent of the housing stock was accessible to those with “moderate mobility difficulties,” and less than 1 percent was accessible for wheelchair users, according to a report from the U.S. Department of Housing and Urban Development. Only about one-third of housing is modifiable, even though roughly a quarter of U.S. adults have a disability, and more than 80 percent of disabled folks live in their communities, not in institutions. Due to continued technological and medical advancements that allow people to live longer with more complex conditions, preferences for aging in place, and the aging of baby boomers, these numbers will only continue to grow.

Today, tips and hacks are shared beyond print advice columns; they are actively discussed in Instagram posts, in online forums for caregivers, Facebook support groups, disability podcasts, and Twitter. For example, in late 2020, the disabled writer and activist Imani Barbarin tweeted the hashtag #AccessibilityAtHome and asked disabled people to chime in with their “most accessible household items.” Hundreds of people replied to praise Roombas, kitchen tongs, grabber tools, phone headsets, weighted blankets, pre-cut fruits and vegetables, and shatterproof glasses.

The website Engineering at Home, created by design researcher Sara Hendren and anthropologist Caitrin Lynch, tells the story of Cindy, a woman who “survived a complex, life-threatening medical event.” She received “the best available ‘rehabilitation engineering’ technology that money can buy—a sophisticated myoelectric hand—and it turned out to be of little importance to her recovery.” What did matter was her “engineering with unlikely things.” The site describes devices she created by function: the category “pinch” includes hacks she devised such as adhesive wall hooks attached to the tops of containers to help her open them, and tongs and tweezers that can be used for grabbing. On YouTube, the channel Zebreda Makes It Work is dedicated to specific disability life hacks for tackling functional tasks, while Natalie Fierce’s channel shares a glimpse of how different hacks and tips help her create a more accessible world at home. For example, Natalie, who has cerebral palsy, published a life hack video devoted to the Alexa Dot speaker. It tells her the news in the morning, plays the radio and audiobooks, and reminds her to take medication—and it does all this with voice activation. “I am dependent on people for so much, and this little thing has increased my independence a lot,” she says. And thus we land on Amazon.

A Reluctant Reliance

Over the last two years, I’ve spoken with dozens of spousal caregivers and some of their ill or disabled partners across the country about the hacks they use to navigate the world, and almost every person I spoke to talked about the key role Amazon plays in their lives. Though generally a malevolent force, Amazon is also a tool many disabled people have come to rely on to fill basic needs that our shambolic health care system often declines to recognize, let alone meaningfully address.

In Pennsylvania, Ben and Tina were trying to problem-solve around Tina’s advanced multiple sclerosis. She only has the use of her right hand and forearm at this point. Ben got the idea to use an Amazon smart speaker from someone in his online support group. Now, like Natalie, Tina uses it to do most things on her own: Alexa keeps her grocery list, sends emails, adds appointments to her calendar, and even makes phone calls. They also purchased smart bulbs so Tina can tell Alexa to turn the lights on and off. She also uses voice activation on her iPhone, asking Siri to text her husband Ben in the other room when she needs to get his attention.

But more than just being a way to increase the accessibility of homes by making as many things voice-activated as possible, Amazon has become a de facto medical supply company, providing access to materials quicker and more cheaply to doorsteps than almost anything else. In Wisconsin, Nancy was tasked with months of wound care following her husband’s leg amputation. The cost of bandages and gauze pads quickly added up, and their insurance coverage was inadequate. “They only pay for so much,” she said. After the initial specialized wound care nursing stopped coming, and all the care responsibilities fell to her, the insurance company effectively told Nancy that when it comes to the cost, “You’re on your own.” So she turned to Amazon to order in bulk “because they’re more expensive through the medical supply company.”

In Arizona, Sherry’s husband needed a hospital bed, but Medicare only covered manual ones—not electrical ones—and in order to adjust the bed, she would have to crank it by hand. Aging herself and solely responsible for her husband’s care, this wasn’t a feasible option. So she got the manual bed under Medicare and then bought an electrical, pressure-alternating mattress that fit into the frame so that her husband wouldn’t get bed sores. She found the mattress she needed on Amazon for a few hundred dollars.

It was a similar situation for Jake in Pennsylvania. His wife needed a wheelchair, as he had been reduced to perilously balancing her on the seat of a rollator in order to push her around. But the process and wait to get a chair customized to her needs and covered by Medicare was longer than they could bear. (This is due to Medicare’s reliance on competitive bidding, wherein companies fight back and forth to offer items at the lowest price—as well as the influx of private equity into the health care market. The result is long waits to obtain and repair wheelchairs and other durable medical equipment.) After a doctor’s appointment to get the prescription for the chair, the initial appointment with the wheelchair fitters turned out to be just an evaluation. Only months later were they able to schedule a second visit where a representative from the wheelchair company measured her. Then, they were told the wheelchair would take an additional six months to make. That’s when Amazon came into the picture: for a little over $100, they ordered a temporary wheelchair to serve as a stopgap measure. It arrived a day later.

Caregivers and disabled people are left to crowdsource improvised hacks to navigate a world indifferent—if not outright hostile—to their actual needs and desires.

For Magnolia in Maryland, Medicare simply refused to cover the things her husband needed. “They’ll pay for a wheelchair, but then they won’t pay for another one for five years, and your needs might change, you might need a different kind of wheelchair by then,” she told me. “The kind of wheelchairs that they’ll pay for are very fancy, and that’s very nice, but he does not have the manual dexterity to use a joystick.” Her husband needed something called a transport chair—which Medicare wouldn’t cover because it hadn’t been formally deemed “medically necessary”—so they researched and got one off of Amazon. “I have very mixed feelings about Amazon as a company,” Magnolia said, “but man, oh, man, it’s so easy to browse through their stuff and find what you need.”

Other people told me about their need to buy six gallons at a time of something called Thick-It, which thickens foods and liquids for folks who have trouble swallowing. Insurance does generally cover items like this but often only from a limited list of preapproved vendors—sometimes only through reimbursement. Amazon offers the best price. Others needed continuous positive airway pressure (CPAP) equipment, which requires a prescription. One woman in Texas told me how her Facebook support groups—which have thousands of members—taught her to find the supplies on Amazon instead. “If you can think of the question, you can ask it,” she said. “When you’re talking to that many people, you’ve got a wide availability of knowledge.”

People were often driven to Amazon because once they were discharged from rehab environments, they encountered obstacle after obstacle in their inaccessible homes. Bathrooms are particularly difficult to make accessible on a budget, and few Medicaid plans cover essential medical supplies like gloves, wipes, and bed pads—if one even qualifies for Medicaid to begin with. So they search Amazon for hours, to find a shower chair they can jury-rig as a commode if they pair it with a five-gallon paint bucket, or a shower chair that is mounted on a long bench with rails and then can be easily slid over and into a tall bathtub. These are things caregivers often find on their own and then share with their support groups, posting online to alert others that they’ve discovered something new.

That Amazon has stepped into the breach to fill a role all but relinquished by the health care system is indicative of a broader failure of social provisioning in the United States. While Amazon and insurance companies report billions of dollars in revenue, and innovators fantasize about the augmented reality glasses that will “fix” deafness, caregivers and disabled people are left to crowdsource improvised hacks to navigate a world indifferent—if not outright hostile—to their actual needs and desires. The failure to see disabled people as creative, collective forces worthy of our attention means that they’re left to make life work in a way that’s mostly invisible. Recognizing the creativity of disabled people, including those aging into it, can move us away from stigmatizing and toward valuing all the ingenious adaptations disabled people create.

A Culture of Collaboration

Disabled people are everywhere. A recent report from the University of California, San Francisco, estimates that approximately twelve million people over the age of sixty-five living in their own homes need equipment to help them safely bathe and use the toilet, but about five million of them don’t have those items, even though they commonly cost less than $50. Meanwhile, the Centers for Disease Control and Prevention report about thirty-six million falls at home per year, resulting in tens of thousands of deaths—many of which could be prevented through the installation of grab bars and other simple home modifications. While some assistive equipment is astronomically expensive, price isn’t the only barrier disabled people encounter. As Dr. Kenneth Lam, a geriatrician and lead author of the study, told the New York Times, “You need whole systems to deliver it.” Even for people who want them, with the difficulties of selecting, ordering, and installing the devices, “it just doesn’t happen.”

The failure to see disabled people as creative, collective forces worthy of our attention means that they’re left to make life work in a way that’s mostly invisible.

It’s not that practical solutions to many daily problems don’t already exist—it’s that existing health care systems don’t prioritize securing such basic items for everyone because the able-bodied are more invested in the quest for shiny new gadgets. They get attention because they reflect broader ableist assumptions that disability is some kind of singular, tragic event requiring a paternalistic—and ultimately irrelevant—technosolution. This same logic organizes our health care system, which in turn prizes empty innovation and profit over the basic, ongoing needs of disabled people. Disabled people’s hacks wouldn’t be so necessary if more attention were paid to the actual needs of disabled people in the design process—of homes, objects, infrastructure. It would, for instance, be relatively inexpensive to establish a national program to retrofit homes with simple modifications to make them more accessible, but the political will simply isn’t there, leaving the onus on the individual.

Our cultural obsession with technosolutionist thinking suppresses our ability to imagine alternatives to this individualist vision. It prevents us from dreaming up other more collaborative forms of creating and caring. But disabled people, and caregivers, too, are already building new worlds—rigging up different ways to do things and sharing them with their support groups. This is disability culture. Framing it as culture transforms the experiences of disabled people and caregivers from something thought of as isolated into shared knowledge and community. This is also crip technoscience. As Aimi Hamraie and Kelly Fritsch explain in their Crip Technoscience Manifesto, it’s about the “practices of non-compliant knowing-making: world-building and world-dismantling practices by and with disabled people.” Crip technoscience sees beauty in the daily innovations that disabled people create to make life work.

As Magnolia in Maryland says of her support group, “Many of the small solutions that I use for whatever little thing is going wrong I’ve gotten from other members of the group . . . they’re always willing to share suggestions about big things and small.” In this light, caregiving, which is profoundly devalued, and disability, which is typically associated with incompetence and undesirability, come to be characterized by profound capacity and capability. It is, by contrast, the tech companies and our so-called “systems of care” that exhibit an overwhelming shortfall—a chronic incapacity to meet the needs of disabled people. Through ingenuity and solidarity, disability and caregiving communities venture to fill this void, but they can only do so imperfectly and for so long.

 

 

As part of a project funded by the Social Science Research Council, virtual interviews and home visits were conducted with forty-four caregivers, and their partners when possible, across twenty-two states to ask them about their caregiving experiences. Participants also provided photos of their homes and hacks. In compliance with research ethics, all names are pseudonyms.

For an archive of detailed examples of disability hacks sourced from the spousal caregivers and disabled folks who participated in this research, you can visit www.disabilityathome.org.