When Felix Walters was waiting for the bus to get home from work one day, she was feeling a little more confident in her walking ability. She stood up from her wheelchair to push it onto the bus. The driver made an obscene gesture and kept driving past the bus stop. Walters has Ehler-Danlos syndrome, which causes sudden and frequent dislocations, as well as other comorbidities that make walking long distances difficult. Because of the discrimination and judgement she has faced as an ambulatory wheelchair user, she doesn’t use her mobility aids as often, which can cause further injury to her unstable joints. Felix is not alone in facing a public that doesn’t believe her illnesses.
Alicia Wilson has nine conditions, three of which are rare. They cause her to faint and fall easily, so using a wheelchair or a scooter is a matter of safety. It’s often easier for her to use the scooter available at stores for shopping than to bring her own, as this leaves space in the trunk for groceries. She gets nasty looks and is called names for taking the last electric scooter by an older person who feels she doesn’t need the device. She has also been shamed for parking in a handicap spot and then walking into a store. People tell Wilson that she looks healthy. She explains, “I have a PICC line and a feeding tube. Most healthy people don’t have those.” Sometimes, the disbelief of strangers upsets her. Other times, she tells herself she’s having a hard day and that they must be having a hard day, too.
While Wilson is sometimes able to cope with her experiences by giving strangers the benefit of the doubt, others find their health worsened by such confrontations. Cassie Borland, for instance, has faced severe discrimination, including physical abuse for being a part-time wheelchair user. This abuse comes not just from the general public, but from medical professionals, too. Borland has several conditions that cause weakness, dizziness, and difficulty breathing, making walking both difficult and dangerous. At one point, one of these conditions caused temporary paralysis from the waist down. This did not stop a doctor from picking her up from the bed and telling her to walk. Borland collapsed and tore her knee, requiring surgery. She has also been pushed out of the way at stores, pushed down an embankment in her wheelchair, and been told by others to get out of her wheelchair to “give them a turn” because they were tired and she “can walk anyway.” These confrontations cause severe stress and, in some instances, fainting or seizures.
People who “don’t look disabled” regularly face discrimination and harassment at the hands of a public that doesn’t understand their needs. Whereas most people understand that paraplegia, quadriplegia, or other spinal cord injuries require wheelchair use, very few understand that many other illnesses can be reasons for requiring mobility aids. Those include, but are not limited to, rheumatoid arthritis, Ehler-Danlos syndrome, narcolepsy, and other conditions that cause extreme fatigue or pain. Often, individuals with these conditions can walk short distances or for short periods of time, especially on days with fewer symptoms. But because the public, and even some professional caregivers, do not realize that most wheelchair users are ambulatory, they face the judgment of strangers who think they are “faking it.” While this discrimination can be emotionally and physically painful, it can also be a catalyst for activism.
As a young person with “invisible illnesses,” Ola Ojewumi faced severe bullying and discrimination. It hurt her, but it also catapulted her career in politics. Ojewumi has mitochondrial disease, which affects her energy levels. According to the United Mitochondrial Disease Foundation, when mitochondria fail, there’s less and less energy available to the cells, and whole organ systems can begin to fail as well. “Walking a block for me is like walking a mile for the average person,” Ojewumi explains.
When she was young, she had a kidney and heart transplant, which, in addition to the mitochondrial disease, made walking difficult. This led to fainting spells and falls. Ojewumi once tripped on the stairs because of nerve damage to her legs, and the other children in her middle school laughed. She could say “these kids didn’t know any better,” but the bullying and ill-treatment didn’t end with her schoolmates. A teacher once told her, “you had your heart transplant four years ago; you’re fine now.”
The judgement continued after she graduated. As a professional, she often gets sideways glances from those who observe her getting out of her wheelchair, which she needs to get to meetings on time. Ojewumi says, “I have great sadness on my end that people think I’m some sort of fraud; it’s just hard to walk…. I couldn’t keep clutching my chest or being constantly out of breath. I need the wheelchair to function in an able-bodied world.” She has been denied access to accommodations, such as working from home part-time, because employers fear that able-bodied workers will want the same accomodation.
In addition to challenging the idea that only paralyzed people need wheelchairs, Ojewumi wants to challenge the belief that people who use wheelchairs are “confined to them.” From her perspective, this myth hurts both full-and part-time wheelchair users. People aren’t “confined to wheelchairs,” she says. They are wheelchair users whose mobility aids give them freedom. “My wheelchair gave me life when I didn’t have one. I grew up without a lot of friends, because I couldn’t keep up with the other kids. I couldn’t go to the mall or movie theatre because I couldn’t walk. When I got my wheelchair at 20, boom, I had a life, I could go out.”
Ojewumi is not alone in feeling this way. Using the hashtag #AmbulatoryWheelchairusersExist, many Twitter and Instagram users have shared stories of the freedom that their wheelchairs bring to their lives. This hashtag was started by Annie Segarra, a YouTuber and LGBT and disability advocate who wanted to bring attention to the discrimination faced by ambulatory wheelchair users in response to news reports of a 10-year-old boy who got up from his wheelchair for the national anthem. Fox News and the boys’ parents called the act “patriotic.”
“A 20-year-old has as much right to use a mobility aid or a disabled parking spot (provided they have tags) as an 80-year-old. And we shouldn’t have to explain ourselves.”
As important as initiatives like this hashtag are, many ambulatory wheelchair users are tired of having to explain themselves to the public. This pressure can be especially intense for young people who are told they are “too young to be this sick.” Katelyn Ducky Bush, who was born with a heart condition that makes exercise extremely difficult, wishes people would understand that “illness and disability doesn’t check the calendar. It just exists.” Bush explains, “A 20-year-old has as much right to use a mobility aid or a disabled parking spot (provided they have tags) as an 80-year-old. And we shouldn’t have to explain ourselves.”
Many individuals with disability find questions about their condition(s) rude, unacceptable, and, in some cases, discriminatory. Why is it okay to ask disabled people about their health when it is considered rude to ask the same of able-bodied people? But some are willing to explain, because they believe that those questioning their needs are doing so out of regard for those with disabilities. (They simply don’t realize that they are hurting the very people they purport to help.) If questions are asked, many people are eager to educate. Recently, my six-year-old daughter asked of another girl, “Why is she in a wheelchair?” The little girl’s mother politely answered my daughter’s question and said, “Thank you for asking.”
These exchanges might be less frequent if the public understood the diversity that exists within the disabled community. Disabilities and illnesses can look very different (or look like they are not there at all). This is why Ojewumi advocates for all people with disabilities. Her charity, Project Ascend, offers scholarships to the disabled, making it clear that those scholarships are open to anyone with disabilities whether they are visible or not. Ojewumi also advocates for services to be available to all who need them, and she encourages public service announcements that explains invisible illnesses. From her perspective, these would teach the public to be less judgemental towards ambulatory wheelchair users.
Members of the public need to understand that the use of mobility aids is not theirs to police. If someone is using something, just accept that they need it. Yes, there are some who abuse the system. But there are far more people with a parking badge or a wheelchair who actually need those accommodations than people who go to all that trouble just to park closer to the building. If you see someone using a service or mobility aid, don’t judge them, because you don’t have enough information about their condition(s). And, as Ojewumi says, if you want the wheelchair and the parking badge, you’ll need to take the disability, too.
Note: The disability community is diverse. Some people prefer to be called “disabled people” while others prefer the term “person with a disability.” The author has used person-first language, as this is her preferred use as a person with several chronic illnesses.