When Murshid Buwembo’s wheelchair got a flat tire in a Home Depot parking lot, Buwembo had to miss three days of work while it was being repaired. And as he related to NPR, the repairs cost him $700. To afford that costly repair, he said: “I had to skip buying groceries.”
For the users who rely on them, wheelchairs are essential devices. But Buwembo’s wait time is not unusual. If anything, it’s on the low end. And paying an exorbitant amount out-of-pocket for wheelchair damage acquired through no fault of the user’s own isn’t uncommon either.
There are over five million wheelchair users in the United States. According to a 2021 University of Pittsburgh study, more than half of all their wheelchairs need repairs on average every six months—and fixing them can take months at a time.
But what’s taking so long, what causes damage to wheelchairs in the first place, and why do users sometimes have to bear at least some of the costs themselves? These are a few of the questions one group seeks to answer.
Connecticut Wheelchair Reform Coalition created a task force devoted to investigating and setting limits on wheelchair repair turnarounds. Their work includes collecting stories of users whose wheelchairs have been damaged and the lengths individuals have had to go through in order to get their wheelchairs fixed and usable again.
The group is documenting these experiences in the hope of making legislative change, similar to a law passed in Colorado in 2022. Called “right to repair,” the law—only the second of its kind in the nation, and the country’s first repair law to ever focus specifically on wheelchairs—”guarantees that powered wheelchair owners can get access to parts, tools and even software—such as smartphone apps—from wheelchair manufacturers,” as CPR News reported.
Dangerous Streets, Careless Handling
One of the front wheels of Pamela Daly’s wheelchair came off into the street during a trip to New York City. A passerby helped put the wheel back on, but a few blocks away, mid-street crossing, it flew off again, this time causing Daly to fall into the street and break her hip. “Many wheelchair users have a story like this,” Daly said in a 2022 interview with WBUR.
“Our streets are falling apart, and so are our sidewalks.”
Wheelchairs can break due to improper design, bad weather, or normal wear and tear—but they can also need repairs because of torn-up pavement, incorrect curb cuts, steep terrain, or other issues with streets and sidewalks. “Even a 1-inch lip can be too high for a wheelchair user to navigate. A slope that is a few degrees too steep can tip someone to the ground,” TIME wrote in 2021. “Sidewalks that are crumbling, pothole-filled or otherwise obstructed—with utility poles, for example—force wheelchair users into the street for a dangerous ride.”
TIME was reporting on the issue after a series of lawsuits against multiple cities across the country, including Pittsburgh, Atlanta, Chicago, and San Francisco, for the unsafe conditions of their streets for wheelchair users.
Advocates cite the lack of investment in infrastructure as the root cause for the issues. “Our streets are falling apart, and so are our sidewalks,” Kelly Lynch, deputy director and general counsel for the Montana League of Cities and Towns, said to TIME.
Crumbling streets and lack of curb cuts are far from the only reasons wheelchairs fail. Senator Tammy Duckworth, who uses a wheelchair, has been vocal about the particular danger flying poses to wheelchair users. One out of every 65 wheelchairs, according to Duckworth, are broken by airlines due to improper handling.
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Even manual wheelchairs are expensive to repair, but the cost for fixes to power wheelchairs, which utilize technology and parts that sometimes must be specially ordered, can easily run into the thousands of dollars.
Motorized wheelchairs can break down for a host of mechanical reasons, such as battery failure. Some parts of a mechanical wheelchair that need attention include the joysticks, head or seat rests, controllers, motors, and base or frame of the wheelchair. More parts potentially mean more potential for issues—and more money when those parts do break down or malfunction.
One wheelchair user interviewed by the Los Angeles Times said she and her partner have attempted to fix her wheelchair at home using duct tape.
The median cost of repairing a wheelchair, as reported by Harvard Health Publishing, is $150, often an out-of-pocket expense. Some of the parts, especially for motorized wheelchairs, are specialized, meaning they’re only available from limited suppliers and their repair can cost more than insurance is willing to pay.
According to the Los Angeles Times, while a manual wheelchair usually costs between $3,000 and $5,000, “a power wheelchair can range as high as $50,000 depending on the specific customizations and technology needed for the user.” And when it breaks down, the price tag for a new one, or to get the old one in working order, is often far higher than insurance caps.
Anne Cohen, a board member of the Disability Rights Education and Defense Fund, told the Los Angeles Times, “The challenge is that over the years, wheelchairs have gotten more and more expensive, and we’re seeing more and more skinny plans.” One wheelchair user interviewed by the Los Angeles Times said she and her partner have attempted to fix her wheelchair at home using duct tape.
Repair technicians are overwhelmed by need and users are limited as to where insurance will allow them to get their wheelchairs fixed—even for something as simple as a flat tire.
An Overwhelming Need
Those specialized parts are one of the reasons wheelchair repairs take so long. Another is the red tape of insurance. As Harvard Health Publishing reported, “Medicare and other insurers do not pay for preventive maintenance such as tightening loose bolts and cleaning casters, allowing problems to go undetected until breakdowns occur.”
Delays in payments for repairing wheelchairs have led users to launch online personal fundraising campaigns or to search for used wheelchairs on Craigslist. And being without assistive devices, sometimes for months, can have serious repercussions for work, family, and social lives. Without wheelchairs, users can’t get to their jobs or sometimes even leave the house.
One wheelchair user who called into Connecticut public radio station WNPR said she’s been waiting over two years for her wheelchair to be fixed. Jonathan Sigworth, a member of the Connecticut Wheelchair Reform Coalition, which formed after a bill proposed in the Connecticut General Assembly to hasten power wheelchair repairs did not pass, told WNPR repair technicians are overwhelmed by need and users are limited as to where insurance will allow them to get their wheelchairs fixed—even for something as simple as a flat tire.
Sigworth is hoping for further legislation that will put standards in place to hold the wheelchair industry accountable for timely repairs. Although the “Consumer Right to Repair” failed in Connecticut, Colorado’s “right to repair” bill also took time to pass, failing in its first iteration too. Sigworth and the other members of the Connecticut Wheelchair Reform Coalition will continue to lobby for change, gathering support in the hope of another bill that by law gives wheelchair users easier access to repairs.
As Christina Mills, executive director of the California Foundation for Independent Living Centers and a wheelchair user, told the Los Angeles Times, “My wheelchair is my legs. Could you imagine determining whether or not you were going to get out of bed based on whether…your legs were going to be paid for?”