Content Note: This post covers many examples of ableism, as well as an instance of fatphobia, and a dysfunctional family dynamic. If any of this is triggering to you, I will not be offended if you cannot read the post. Thank you.
Recently, I was at a Target; there to pick up a prescription. Since the pandemic started, I only go out for necessities. I found myself looking up at a row of bottles of liquid foundation in the cosmetics aisle as I waited. I was in my wheelchair, and the makeup was up on a high shelf. Before I could decide to stand up to reach the bottle I wanted to examine, a person came up to me and asked if I needed help. I could have said no. I’m not paralyzed, and can stand for short periods of time. However, I was nervous because the store was crowded and I didn’t want to be accused of being a faker, nor did I want to be harassed. So I told the person “yes,” and they handed me the bottle I wanted to see. I thanked them, and as they walked away I felt a little guilty. I didn’t exactly lie; I truly need my wheelchair. But I neglected to point out that I could stand for a short period, and so I had complicated feelings about the interaction and how I overperformed my disability.
Overperforming disability is a phrase I use to describe the ways many disabled people demonstrate we are indeed disabled, at times when ableds might doubt the extent of our disability. Overperforming disability includes my not standing up from my wheelchair. Why am I scared to stand up from my wheelchair for a few seconds? It’s not because I’m afraid of getting lightheaded, which happens to me frequently. Nor is it because I can only stand for a minute or two, which also is a problem. Instead, it has to do with our systemically ableist society. I’ve been using a wheelchair for seven years, and I’ve come to realize the average abled person is woefully uneducated about physical disabilities. When people see me, a person in their mid-thirties, sitting in a wheelchair, most assume I either have a spinal cord injury (SCI) or multiple sclerosis (MS). In my personal experience (other wheelchair users might have a different view), SCIs and MS are the top two conditions abled people know about when guessing why a stranger is in a wheelchair. Most of the abled strangers I come into contact with are not educated about the scores of conditions that could necessitate a wheelchair. I could not find an up-to-date number for how many Americans use a wheelchair in 2020, but in 2006 the number was 2.7 million. It would be impossible for me to list all the conditions that necessitate wheelchairs but they include chronic pain, cerebral palsy, muscular dystrophy, limb loss, spina bifida, myalgic encephalomyelitis (chronic fatigue syndrome), and lung disease. Many wheelchair users are ambulatory chair users: those who can stand and walk at least a little, but still require the use of a wheelchair to varying degrees, from occassionally to most of the time. I could not find statistics counting how many of those 2.7 million wheelchair users were ambulatory wheelchair users, but I’m guessing it’s a large number, going off my personal experience as someone who has used a wheelchair for seven years. If I can’t find accurate data, I cannot fully blame abled folks for their ignorance, as we don’t as a society educate laypeople about disability. Still, I don’t look forward to revealing to ableds that I can stand and walk short distances, as they are responsible for their ableism, and I dread their reactions.
Since the day I started using a wheelchair in 2013, I’ve been accused of faking my disability. Ableds’ misconceptions are dangerous. Because I could still walk a little, family members were convinced I was exaggerating my disability. One family member told my mother my needing a wheelchair was probably a delusion stemming from my bipolar disorder. My psychiatrist and physiatrist (a doctor that treats physically disabled people) disagreed with that assessment, which was voiced by a family member who has no medical background. I did the best thing for my mental health and am now estranged from every single family member who believes I just decided one day to stop walking more than 10 – 20 feet and give up my dreams, as if that’s something people regularly do. Distancing myself from my late father’s family didn’t stop the gossip and harassment, however. My first winter as a ambulatory wheelchair user, I wrote a Facebook post reminding people to check in on their disabled and elderly neighbours. My late father’s friend commented on the post, insinuating I was faking my disability for some kind of project or experiment. He was blocked. At my final job, before I became too weak to work at all, a coworker went around to all the people in the warehouse and all the delivery drivers, and told them I didn’t need a wheelchair, because I could stand to get a document off the fax machine. She was suspended for a week, but I was the one crying in my boss’s office while he repeatedly asked, “But why does it matter what she says?”
There’s a meme floating around the internet that demonstrates why it matters. It’s a photo of a real woman standing up from her wheelchair to grab a bottle of alcohol off a grocery store shelf. The caption? “There’s been a miracle in the alcohol isle [sic].” Star Trek actor George Takei posted the meme to one of his social media accounts and the backlash was swift, forcing him to apologize. Despite Takei being taken to task for it, I still frequently see the meme, because ableds who know nothing about wheelchair users love it. I’ve had to educate people several times about why the meme is ableist, or discriminatory toward disabled people. It ignores my existence as an ambulatory chair user, the photo was taken without the subject’s permission, and it shames a disabled person for doing what so many of us like to do, regardless of disability: have the occasional drink. I really don’t want to be part of any memes showing my flat behind as I stand to grab margarita mix or a bottle of foundation or a frozen dinner. I also don’t want to be harassed, mocked, or attacked.
That last part may seem unlikely to you, if you’re not disabled. The truth is there are many, many disabled people, wheelchair users or not, who are accused of faking their disabilities, and it’s both ignorant and dangerous. I have friends and acquaintances with invisible disabilities (a disability that is not readily apparent, like arthritis, fibromyalgia, or Crohn’s disease) who have been verbally attacked for using an accessible parking spot. While they appear healthy at first glance, they have a variety of conditions, like bad knees, prosthetic legs, or connective tissue disorders. I’ve seen the notes people leave on disabled people’s cars, shaming them for taking an accessible parking spot from “someone who really needs it.” Indeed, I got my first accessible parking placard when I was 22, because I had what I later learned was small fibre neuropathy, and my feet had just started to burn and ache constantly. It also started to hurt to walk. I looked otherwise healthy, and was approached frequently by people accusing me of stealing my nonexistent grandparent’s parking placard to get a better parking spot at work. People get angry enough that yes, disabled people are harassed or attacked. C.G., who is in his thirties and has a service dog, has been stopped by ableds and informed that his dog isn’t a real service dog because he’s “too young” to need one (the truth: many young people were born disabled or become disabled, just like our older disabled peers). In one concerning incident, C.G. was at a theme park, queuing up with his service dog. A woman in another queue, not believing C.G. needed a real service dog, tried to take his dog from him. Fortunately, C.G.’s service dog made a noise and alerted him right away. Nevertheless, laying hands on a service dog in such a way puts the dog and handler in true danger. A distracted service dog can’t sense oncoming seizures, alert for blood sugar drops, or help with a panic attack, making touching a service dog without permission a selfish and risky thing. It’s exactly why many service dogs are put in vests asking the public not to touch them. C.G. also reported that ableds have approached him and his dog and tried to stop the pair, both with words and physically. Non-disabled laypeople assuming that C.G. is not actually disabled and deciding they get to harass and possibly hurt a disabled person and their service dog based on their uninformed opinion is the very height of ableism.
I have talked to a number of disabled people about how we at times overperform our disabilities to protect ourselves from situations like the ones C.G. and his service dog found themselves in. To shield ourselves from becoming memes. To avoid arguments over parking spaces and bus seats. Other forms of harassment include threatening notes on our car windshields, vandalism of our property, and verbal attacks. Again and again, the stories I’ve heard from my disabled comrades remind me of what I’ve had to do to avoid harassment. My friends R.N.D. and S.S., who like me, are in their thirties and appear otherwise healthy, bring their canes with them, even if they’re not necessarily needed that day. Says S.S, “I always bring my cane into the store, even on good days, because I look fine walking from the car to the door, but there’s no way I can walk through the whole store. But walking into the store, and sitting down in the motor cart won’t fly if I don’t have some visible sign of my disability.” For a disabled person, it’s easy to guess why using a scooter at the store requires bringing one’s cane. Both store employees and random shoppers used to quiz me about my scooter use, before I got my wheelchair. I was accused of fooling around in the scooter when “other people actually need it.” People would stop and glare at me. Carrying my cane with me helped hush rude store employees and shoppers. Still, most people assumed I had simply injured my foot and when I’d tell them I was disabled, I was met with disbelief, because yet again, I was “too young” to be disabled, according to the ablebodied people in my local Kroger, who have no experience with disability in people under 50. R.N.D. added that she brought her cane on her honeymoon, just in case. Disabled people should not fear ableism in everyday life, nor should they experience it on their honeymoon.
There are others, like me, who are ambulatory wheelchair users who can stand for short periods, but don’t want to be harassed or made into a meme. A wheelchair user we’ll call, I.L. says, “If I’m using a wheelchair, I always keep a folding cane with me so that if I have to stand, I first take out the cane and use it to help me get up. I’m supposed to be using the cane anyway since I’m a fall risk, but I’ve gotten in the habit of being obvious about leaning on it and getting up slowly and walking slowly so that ableds don’t assume I can actually walk unaided.” I.L.’s actions may seem unnecessary to the abled people reading this, but please recall that my uncle thought my ability to walk ten feet but needing a wheelchair to travel farther was a symptom of mental illness. Now imagine what a stranger, who doesn’t understand all the ways physical disability manifests, might do if they see someone they think is faking.
Someone with firsthand experience being attacked for not appearing disabled enough for ablebodied strangers is K.S., a thirtysomething who describes their experience riding the bus, and had this to say: “When I used forearm crutches and later a walker as well, several times I had people yell at me for taking the disabled seating on the bus, because an older person got on, etc. There was usually someone older by me so they assumed the mobility aid was theirs. It was so frustrating to have to be like, ‘these are mine,’ or people who ask invasive questions because they think you have to be lying because ‘you don’t look disabled.”‘
When a stranger comes over to harass a disabled person for using accessible parking, standing, or otherwise appearing to be faking, many of us are concerned the abled person policing disability could hurt us or make life difficult for us. What if my boss hadn’t believed I was truly in need of a wheelchair and instead believed the coworker who spread rumours about me? I could have lost my job. I’ve already lost the entirety of my late father’s family because of this ableist nonsense. But amily aside, strangers are vicious to people who appear not to need accessible parking spots at first glance. People are verbally harassed, experience property damage, and more. In 2015, the South Florida Sun Sentinel reported on a woman who had an accessible parking placard for an invisible disability, and who was regularly harassed for parking in accessible spots. The publication went as far as to call those that smashed her side mirror, bent her windshield wipers, and snapped her antenna vigilantes. The article also quotes Wayne Connell of the Invisible Disabilities Association, who notes disabled people are screamed at, get nasty notes, and find their cars keyed.
In 2015, the Guardian covered The Disability Hate Crime Network’s survey on hate crimes against disabled Britons. The attacks varied; some verbal, some physical. 11 out of 60 comments brought up the idea that the attackers thought the victims were “scroungers,” or those not truly disabled and cheating the system. Said one victim, “I was asked why I use a wheelchair sometimes, but sticks [canes] on other days. I tried to explain my condition varies from day to day. I was then told I was just fat and lazy and was doing it to get benefits.”
Given how nondisabled people treat those they don’t believe are disabled, is it any wonder so many of us overperform our disabilities? I don’t want to become an internet meme. I don’t want to be screamed at. Nor do I want to be touched or have my car vandalized. So I don’t stand up if someone offers to get something off a high shelf for me. J.M., who is in her twenties, has invisible disabilities, and is also concerned with what could happen if someone sees her and isn’t convinced she’s disabled. She says, “When I use one of the last remaining accessible parking spaces, I often limp (on purpose) to avoid insults and stuff. Right now I’m limping not on purpose, but when things are more internal (when my asthma is acting up, or my fibromyalgia), I bring back the limp.” J.M. isn’t a faker: she has real disabilities, including severe chronic pain, but feels she must fake a limp due to fear of confrontation. H.C., a thirtysomething who also has invisible disabilities, added, “When I do use my [wheelchair] (which isn’t as often as I probably should because of this), I don’t get up to do things I could do. There have been times when I would wheel myself into a small bathroom even though it might have been easier for me to park it outside and carefully walk in with the assistance of my cane. Also, when I use my [accessible parking] placard, I make sure I’m using my cane 100% of the time for this reason too, regardless of my actual need in that moment.”
The important thing to remember as you read these stories is that we are not faking our disabilities by overperforming disability. We are indeed disabled and do in fact need our wheelchairs, walkers, canes, and service dogs. We truly need accessible parking spots and bathroom stalls. We need our disability benefits and community support. It’s simply that we are forced to make sure strangers believe it too, or else we could be put in danger.
There’s an easy solution to this problem, and that is educating children and adults about disabilities. Everyone should know what ambulatory wheelchair users are. Everyone should be able to define invisible disabilities. One thing I desperately wish people would know is that there are scores of conditions that can put you in a wheelchair, necessitate crutches or canes, or require accessible parking or service dogs. I’m tired of people insisting that if I don’t have a spinal cord injury or MS, I don’t need a wheelchair. This is what caused problems at my former workplace. As I said, the person who made my disability her business was suspended for a week for her ignorance. I wish she instead had been required to educate herself about wheelchair users. If I were invited to do a TED Talk, I would focus on educating the audience about how awful it feels to see a meme like the one above or to cry in your boss’s office because not only is a coworker telling everyone you don’t need a wheelchair, family members are telling anyone who will listen that you’re a hypochondriac. I’d point out how alarming it is to have hands laid on you or your service dog, and how scary and disheartening it is to come back to a vandalized car or even just a nasty note.
Where shall we start? Children are the easiest to educate. I’ve thought about writing a children’s book about invisible disabilities, ambulatory wheelchair users, and people who use a cane or walker part-time. Whenever a child asks about my cane or wheelchair, my answers seem to be taken seriously, with children doing better than adults in many instances. Just last week, I was waiting in a long, socially-distanced line at the grocery store, and a little boy turned and asked why I was sitting in a wheelchair. The father apologized, but I wasn’t offended, and explained to the little boy that I didn’t walk very well, and the wheelchair helped me get around the store. The father reminded his son that he got a ride in a wheelchair when visiting a grandparent in the hospital. “It’s fun, isn’t it?” I asked the little boy, and he agreed. It was a simple, easy conversation. Children are easily educated, and rather than asking me why my legs move if I’m in a wheelchair (which many adults ask, given people assume I have an spinal cord injury), children are much more interested in how fast I can travel, or if they can push my chair a little.
Adults are harder to educate. Many are likely impossible to educate. Someone who is going to commit a hate crime against a disabled person because they think the person is a “scrounger,” probably won’t learn much. But we must still make an effort when we can. It’s critical that abled people who are educated about disability help, and with the guidance of the disabled, work hard to challenge other ableds who say things like, “I saw Anne stand to get something out of the breakroom fridge. She must not really need a wheelchair.” Ableds should also try to explain what an invisible disability is to other abled people, particularly when other ableds want to confront someone over an accessible parking spot or grocery store scooter. Because they will confront us. They will key our cars. And they will take photos of us and mock us online. Ableds, your help is critical, and I hope that this modest blog post can help you challenge ableism in whatever way you safely can. Do not let your friends and family get away with snapping at a young person in a scooter. Explain what an ambulatory wheelchair user is when you see the infamous alcohol aisle meme. Most importantly, challenge yourself and your preconceptions and redirect your thinking when you see or are with disabled people who contradict what you believe about us. Your help is not only appreciated, it will save disabled people a lot of trouble.
Many thanks to the disabled folks who made themselves vulnerable by talking about how they overperform their disabilities to stay safe and to be left alone. Your assistance is in helping abled people understand disabled people’s reality was invaluable.