I have often heard the phrase “your wheelchair is like your legs” when talking to people about my broken wheelchair. They are not wrong, but that phrase understates how important the wheelchair is to me. It is more than just a substitute for my legs, it is a whole-body kind of thing. The relationship my body has to the wheelchair is unique, and key to my overall well-being. I need my wheelchair to complete all self-care tasks like getting on and off a toilet or shower bench. I cannot reach a sink to wash my hands without my wheelchair, which is not only part of self-care but also the best way to practice good hygiene which is important to public health. Without a working wheelchair I cannot prepare food, or even use the refrigerator to ensure I stay hydrated. My wheelchair helps more than just “my legs,” it is my survival tool.
Because a wheelchair is essential to my everyday life, it is a big deal when it breaks. A wheelchair malfunction is extremely dangerous because I live with Osteogenesis Imperfecta, a connective tissue disorder that causes fragile bones and other health problems…I was lucky that when my footrest broke off the wheelchair last summer that I did not fall out of the wheelchair and break a bone or suffer other significant injury. But when my footrest broke off my wheelchair it did make it difficult to complete most self-care activities, which is something non-disabled people fear more than anything, losing autonomy or control over personal self-care tasks. Unlike when you break an actual leg, I could not get any additional home care help because the system does not care if your wheelchair works or not. I requested a loaner chair for the months I had to wait for the repair, but the loaner chair they delivered was not even close to my size. I am an LP (Little Person), so the size of my wheelchair is customized unlike any of the loaner chairs the wheelchair company made available. That wheelchair repair took a little over 8 weeks (about 2 months) to complete. That is the typical time period it takes for a wheelchair repair. Wheelchair companies have no concerns about making disabled people wait 6-8 weeks for repairs. They offer no sign that they even understand how their glacial pace disrupts people’s ability to live their lives.
Rather than seeing this disruption they treat this wait as if it is merely the cost of being disabled. I cannot functionally walk, so I use a wheelchair to function – anywhere – inside or outside my home. If my body could functionally walk, I would have the privilege of never worrying about maintaining a wheelchair that cost thousands of dollars because when you walk your mobility is free. Being forced to wait for something that everyone else gets for free, is an additional tax on disability.
There is no other object in my life that takes so long to repair. Nothing takes as long as it takes to repair a wheelchair, even my phone with its incredibly advanced technology can be fixed in an afternoon. At the same time there is no other object in my life more important to me than the wheelchair so it is hard to understand why basic maintenance takes so long. It is infuriating to be forced to use a wheelchair that is dangerous, just because I must wait months for it to be fixed. Feeling safe is undeniably important to a person’s health and wellbeing. Every moment a wheelchair goes without being repaired a person is being forced to live in fear and feel unsafe.
For weeks while I waited for my wheelchair to be repaired, I had to deal with the consequences of feeling scared to move even inside my own apartment. The broken wheelchair was a real burden in my day-to-day life so my friends and family tried to fix it for me, but the repair needed replacement parts from the wheelchair manufacturer. There was no other way to feel safe moving around my home (or anywhere) without the aid of my customized wheelchair.
The standard wait time of 6-8 weeks is unacceptable because of the physical and mental anguish a broken wheelchair causes. While I was waiting for my footrest to be repaired, I experienced pain from allowing my legs to suspend from the seat all day. The pain itself was bad but knowing that it lasted 8 weeks because the wheelchair company refused to fix it sooner, made it so much worse.
Recently I found myself stuck again waiting on the wheelchair company for over 6 weeks to fix my wheelchair. Beyond the painful anxiety caused by not being able to move around freely or safely, using a broken wheelchair caused me physical pain and injury as well. I am still recovering from the shoulder injury after the axel holding my wheels together got damaged which caused an incredible amount of resistance to turn the wheelchair. As a result I experienced severe shoulder and back pain. Pain is harder to endure when you know it could have been avoided. The wheel would also get stuck and very unexpectedly jerk the chair to a point where I was afraid I was going to tip over or fall out. Even though I did not feel safe using the loaner wheelchair, but I had to use it until the new parts were received by the company charged to repair it which took about 8 weeks. During that time I went without doing things I both needed and wanted to do but couldn’t do, only because the wheelchair was not working properly.
A broken wheelchair is a problem with an easy fix. Regardless of whether it is greed or apathy that makes it difficult for wheelchair users to get repairs, doesn’t matter. People are hurting every day from the long wait to fix their wheelchairs. After a recent conversation with a manager at the wheelchair company, I learned that every time I request a repair, the wheelchair company needs approval from both my doctor and insurance company to even order the replacement parts. I also learned they do not keep any replacement parts for my chair in stock at all, which is hard to understand because things like wheels, or forks, and even footrests break all the time. Such occurrences should be expected and they should be required to keep parts in stock so wheelchairs users do not have to wait months.
The bearings on front wheelchair wheels and forks naturally wear away over time. That has happened every few months on every wheelchair I have ever owned. I hope the next time it happens I am not forced to wait months and propel through pain while I wait.
Wheelchair companies could do more to repair the wheelchairs people use every day, but they do not because there is no money to be made in maintaining and repairing wheelchairs, especially customized ones like mine. The profit is made by selling new innovations. Companies are not interested in disabled people’s quality of life. They only care about profits which is fine and good, but they need also to make an investment in maintaining the technology that real people use and depend on to survive.
The Disability Community deserves better from an industry that makes its living from us. Every time I have to wait months for a repair, I am reminded that I cannot be the only one – there are millions of wheelchair users that must have to deal with the same thing. So many disabled lives disrupted because the equipment they depend on is deemed so inconsequential that that there is no need to rush its repair. I do wonder if the executives of these companies were wheelchair users, would the repairs take as long?