I hear it frequently, often on the news. The reporter will be speaking about someone with a disability, someone with mobility issues specifically, and they say it: the person they’re covering in some frustratingly ableist story is “confined to a wheelchair.” I loathe the phrase, along with “wheelchair-bound.” I hit mute, because I’m tired of hearing wheelchairs characterized as prisons and the effect that has on how ablebodied people view wheelchairs and their users.
The truth is this: I am not confined to a wheelchair. No one glued my behind to the seat. Nor am I wheelchair-bound. That phrase in particular makes it sound like I was cursed by begrudged witch rather than contracting mono in graduate school, then falling headfirst into the physical disabilities and numerous difficulties that followed. I’m an ambulatory wheelchair user, meaning I can stand and walk a little. Not only are the twin terms describing wheelchair users like meinaccurate in the most literal sense, they are completely wrong with regard to my relationship with my wheelchair, as well as many other wheelchair users’ experiences.
I started out graduate school in 2011 in relatively good health. My only disabilities were controlled bipolar disorder, OCD, and undiagnosed autism. As I progressed in my studies, I started having foot, leg, and back pain, as well as overwhelming fatigue. I suddenly found walking around campus difficult. Making the trip from my office to the building next door, where I taught composition, exhausted me. Reading tired me. Writing tired me. My classes tired me, but I pushed through, thinking I was just burnt out. That happens to many grad students, and every grad student I knew was pushing themselves just as hard. Unaware I had mononucleosis, I made it through, but as soon as I finished my Master’s program and stopped working at the university, my body and health crashed. The mono I had been oblivious to likely triggered what came next: myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). I was also diagnosed with fibromyalgia and later, with small fiber neuropathy, which causes severe nerve pain. Because of these conditions, I have difficulty standing for very long, and walking any significant distance. I would try to walk into a CVS and end up on the floor, unable to stand long enough to pick up a bottle of ibuprofen, wait in a short line, and pay. I’d have to rest by sitting on the floor while in line, and then again after paying, before trying to walk to my car. Such tasks left me breathless, wracked with pain, and exhausted. I was unable to put on my academic dress and walk in my own graduation ceremony. Most of the time I was too sick to leave the house, but even when I felt able to get dressed and venture out into the world, I couldn’t get far. Because of this, I was unable to pursue work, nor could I do much of anything outside the home, apart from sitting on my porch or patio. It was clear I needed help to get around. However, I did not have insurance that would cover the kind of manual wheelchair I needed, nor was I independently wealthy. Desperate, I did what so many poor Americans with inadequate insurance coverage do: I started a fundraiser.
It was slow going. Most of my family thought I was exaggerating my disability, and did not share the fundraiser when I asked them. Rather, they flat out ignored me and talked about how deluded I was behind my back. At the time, most of my friends were poor grad students, teachers with massive student loan debt, or otherwise unable to help beyond sharing the fundraiser – understandable given we are all millennials. Rather than bothering broke friends for donations, I turned to social media for help, prostrating myself before the masses online. The masses amazed me with their kindness. Slowly, I collected the money; five or ten or fifteen dollars at a time. I also received the occasional larger donation from complete strangers, from all over the world. However, ultra lightweight manual wheelchairs are not cheap. The wheelchair I had in mind was a little over one thousand dollars, and it was the least expensive model I could find. While I waited to save enough to buy a wheelchair, I was mostly left to spend my time in my little home, which I share with my mother. It was hard being 26 years old, with a new Master’s degree and a desire to work, but being too disabled and in pain to do anything. I spent my time home alone on the couch with my kitten, depressed and demoralized. The only place I could go was the grocery store, where there were scooters I could use, and where my mother could assist me. I grew isolated more and more, despite the occasional visit from friends.
It took months of begging strangers on the internet for help, but I was eventually able to purchase my wheelchair. My wheelchair was custom-built for me and it took a month to be made and shipped from Mexico to Michigan. The day it arrived, I almost was almost brought to tears. Having already been shown by a disabled friend how to break down a rigid frame wheelchair from the driver’s seat of the car, and how to store it on the front passenger seat, I excitedly left my house that night and drove to one of the big hardware stores by myself. My stated goal was to buy a set of Allen wrenches to adjust the chair, but truthfully, I was simply desperate to get out of my house. My arms are stronger than my legs, and even without practice I was able to roll around the store for a short while. I was able to just enjoy being somewhere new for the first time in long while. After exploring the store, I bought the wrenches and drove home, feeling liberated.
My wheelchair expanded my world immediately. I am not confined to a wheelchair; not because I can stand briefly, but rather because to me, wheelchairs are not confining, they are freeing. With a wheelchair, I’m able to get out: I can get coffee with a friend, take a “walk” in the park, and take myself to the doctor’s office. Until my health worsened, I was able to work a part-time job, which was incredibly gratifying, despite my low pay. When I had my ten year high school reunion, I was able to spin my wheelchair around on the dance floor, to the pop hits of 2004. It was my first time dancing since I had become ill, and my first experience with wheelchair dancing. It was exhilarating and I did not feel one bit confined.
Wheelchairs aren’t a death sentence for one’s life. They are mobility savers. Even if one cannot walk or stand at all, they are not confined to their wheelchair. They get in and out of their chairs themselves, or with help, and just like me, their wheelchair enables them to do wonderful things. Without a wheelchair, many of us wouldn’t be able to get around at all.
My wheelchair was a lifesaver, truly. Now that my health is worse and I find myself unable to work a job or leave my house as often as I’d like, the days I have the energy to leave my home are incredibly important and only made possible by my wheelchair. This is not to disrespect those who can’t leave their homes at all. Thanks to friends, family, and the internet, one’s world can be quite large and still centered at home. After all, here we are, you reading my blog post. However, I do value the time I’m able to spend outside, and am grateful for the independence my wheelchair affords me.
When wheelchair users and our relationship with our wheelchairs come up, I make it clear to ablebodied people: I am not confined to my wheelchair. However, I am confined in numerous other ways. I’m confined by cracked sidewalks that don’t let me pass without help and which cities ignore. I’m confined by ramps that are built too steep, and by buildings that don’t have ramps at all. I’m confined by broken elevators with signs that urge the reader to take the stairs for exercise. I’m confined by the people who see me in my wheelchair and talk to me like a child, or who ignore me and talk to the person I’m with instead, as if I cannot speak at all. I’m confined by those that seek to gut the Americans with Disabilities Act. I’m confined by the rule that states people on SSI, a type of disability benefit, cannot marry, or often live with a partner without losing some or all of their benefits. I’m confined by an ableist society, not my wheelchair.
When someone uses the phrases “confined to a wheelchair” or “wheelchair-bound,” they reinforce the notion that wheelchairs are a burden to the user. For me and many others, that is simply not the case. When famed theoretical astrophysicist and author Stephen Hawking passed, many ablebodied people remarked online that in death, he was “free” from his wheelchair. That was painful for me to hear, as it clearly showed me how people viewed wheelchairs and their users. It’s true, Stephen Hawking had to first be persuaded to first use a wheelchair, but without one, he would not have been able to work or get around Cambridge as easily as he did. I can’t speak for Hawking and describe how he felt about his wheelchair, but I know that it gave him mobility and it allowed him to do things he otherwise would not have been able to do. Like me, Hawking liked to use his wheelchair to dance. He was also was known for wildly driving his motorized chair around campus. Ablebodied people see a man in a wheelchair and think he has lost something, because walking is overvalued by them. I see someone in a wheelchair who may have trouble walking, and see a persom who has retained some mobility and agency.
The phrase “confined to a wheelchair” is more confining to me than my wheelchair is, as it ignores my experience as a disabled person and the things I am able to do in my wheelchair. The belief that wheelchairs are confining burdens is reinforced by the stories told about disability that don’t include disabled voices. Note how people in wheelchairs are covered by the reporters who characterize us as confined to them. Most of the time, disability-focused news reports centre around inspiration porn (feel good stories that use a person’s disability to inspire ablebodied people) or a wheelchair user who struggles to walk again, even if half-carried by others, because in society’s eyes, walking with help is preferable to rolling by oneself. Rarely do I see stories about how beneficial wheelchairs can be and how they allow people to do things they couldn’t do before. I never see stories about people who have started to use a wheelchair and whose life has been improved by their mobility aid. This is what happens when ablebodied people tell disabled people’s stories.
There are surely some wheelchair users who disagree with me, who find their wheelchairs confining. That’s fair; their experiences are valid. Disabled people are not a monolith, and we all have our own views. However, the fact remains that without wheelchairs, too many of us would be unable to get around, unable to work or attend school, unable to complete tasks of daily living. To err on the side of caution, ablebodied people should avoid describing people as “confined” to their wheelchairs and avoid using the related phrase “wheelchair-bound.” Ablebodied people viewing wheelchair users through what I call the “confinement lens,” or using the words “confined” and “bound” yields only negativity. It’s hard to see something as positive or helpful when you’re biased against it.
When we replace “person confined to a wheelchair ” with “wheelchair user” we move closer to viewing disabled people in a more positive and truthful way. A wheelchair is a mobility aid, and the person sitting in it controls it. Even if someone else pushes the wheelchair for them, they mostly direct where the chair goes. If someone is incapable of communicating where to go, the chair still serves them. Saying someone is confined to a chair implies the chair is in control in some way. We may begin changing how people view wheelchair users by first changing our language, and that is a small but critical step toward disabled liberation. I have instructed myself to make an effort to correct ableist language when I hear it, and it would be very helpful for ablebodied people to also correct fellow ablebodied folks who describe a wheelchair as confining or binding. That includes those in news media, where I hear such language the most. A commitment to returning agency to wheelchair users will hopefully encourage the telling of stories that depict wheelchairs as a positive thing in a person’s life and the wheelchair user as a full person with agency.
I will likely always need a wheelchair for getting around outside my home. That thought does not sadden me. It would be nice to be able to walk and run and stand for long periods of time, but walking is not better than rolling. I ask ablebodied people reading this, to break the confinement lens, which dictates how they view disability and wheelchairs. I ask ablebodied people to stop using the phrases “confined to a wheelchair” and “wheelchair-bound.” I also ask ablebodied people to correct those who use those phrases around them, including those in the media. I hope one day I see a story like mine in the news, where wheelchairs are seen as mobility savers and a benefit to those who use them.
Note: This entry was written before the Jacob Blake shooting, which left Blake paralyzed from the waist down. Many people I see on social media seem to believe this means the end of Blake’s life. I hope having read this essay with an open mind you can recognize that while Blake may be paralyzed, his life is not over. It will be changed, significantly, and he will need a lot of assistance, but life as a disabled person is still a life worth living. Please watch your language when you speak of Blake’s circumstances and remember that disabled people (including disabled people of colour) face a great deal of discrimination based on a lack of understanding, but that a disabled person has a lot to live for. I hope this essay helps you better support those like Blake, and those like me. Further, our energy should be focused on ableism and institutional racism.