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No One Should Be Shamed for Using a Mobility Aid![]() The right mobility aid can open up the world. When fitted correctly, it’s an extension of the body, a way for people with disabilities to participate in society more equally. Just like using crutches for a broken leg, using a wheelchair or rollator shouldn’t be controversial or brave. But despite how life-changing mobility aids can be for the people who need them, they are also heavily stigmatized. A 2024 study in Disability and Health Journal that surveyed 60 wheelchair users found themes of feeling “patronized.” “People are weird about it,” reported one wheelchair user. “I often have people just openly stare or come up and ask invasive questions.” This is especially true for people, like me, with invisible disabilities—impairment that isn’t externally obvious—and people with dynamic disabilities, whose symptoms change from day to day. These types of disabilities are fairly common: an estimated 70% to 80% of disability is invisible, and such disabilities are often misunderstood. Just because someone is an ambulatory wheelchair user or only uses mobility aids during a flare-up doesn’t mean they don’t need them. And it certainly doesn’t mean it’s okay to shame people who use them. Josie Tang, a 21-year-old artist based in Cornwall, England, uses a variety of mobility aids to manage hypermobile Ehlers-Danlos Syndrome (hEDS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Tang is constantly exhausted, and their joints are unstable, leaving them prone to falling. As their mobility declined, they swapped out walking sticks for forearm crutches, a rollator, and wheelchairs. Tang has shared their experiences with mobility aids on Instagram since 2024 to “help other people see someone like them.” Unfortunately, Tang often deals with discriminatory comments, both online and in person. “I was walking on the beach with two friends who were disabled. We were all using a stick or a crutch, and we passed a pair of older women,” Tang says. “They were like, ‘So you’re practicing what it’s like to be older then?’ And I wish I had said, ‘No, we just live with debilitating pain.’” Strangers have knocked on Tang’s car window to ask why they’re using a handicap parking spot, despite clearly having a Blue Badge placard in their car. Dr. Julie Hershberg, clinical associate professor of physical therapy at the University of Southern California, has seen firsthand how life-changing mobility aids can be, and how stigma can keep patients from using them. She recently helped a teen with severe postural orthostatic tachycardia syndrome see a Taylor Swift concert. Even just sitting upright set off the teen’s severe dizziness, so Hershberg modified a wheelchair to partially recline. “It was life-altering just to be able to do a normal teen thing,” she says. But a number of her patients deal with negative messages from their peers and families. Some are bullied or called “lazy” to the point that they decline using mobility aids to avoid what other people will think or say. “They don’t like people looking at them. They don’t like people asking questions. They don’t want to be seen as disabled,” she says. “They cut back life and joy and the things they want to do.” Normalizing the use of mobility aids is only becoming more vital as the rate of disability has increased. In 2019, there were roughly 41 million noninstitutionalized people with disabilities in the U.S., per the Census Bureau. By 2024, that number had risen to almost 46 million. COVID created a significant new population with invisible disabilities, as approximately 6% of people who get sick with the virus go on to develop Long COVID. And people with pre-existing conditions, including autoimmune conditions, are at a higher risk. Mobility aids are essential for managing energy-limiting conditions like ME/CFS and Long COVID. “Imagine starting your day, every day, with a cell phone battery that only charges 10%, and you have to manage your use of your device within that limited amount of charging space,” Emily Taylor, president and CEO of Solve ME, a nonprofit dedicated to advancing research for infection-associated chronic conditions and illnesses, explains. People end up choosing between making dinner for their family or showering, in what Taylor describes as “the calculus of living.” ME/CFS is characterized by post-exertional malaise, an “increase in frequency or severity of symptoms” or new symptoms 12 to 48 hours after an activity, Taylor explains. The symptoms are not proportional to the activity and can last from days to weeks, or more. That delay, paired with unpredictable triggers including heat or cleaning products, often makes the condition extremely difficult to manage. Using a wheelchair can be a vital lifeline. Taylor’s own mother has ME/CFS, and has received backlash from family members after using a wheelchair to attend a family wedding. “Wheelchairs are critical for this community,” Taylor says. “And it’s harmful to their access to daily life when they’re confronted for ‘not being disabled enough.’” Though a wheelchair is the visual symbol for disability internationally, it’s far from the only tool. These days, Tang primarily uses a forearm crutch to walk around their neighborhood, as it fits on the narrow sidewalks. Their home, which they share with a roommate who is also disabled, is too small for an electric wheelchair. And while a regular wheelchair gives them some help moving freely, “they’re hard to propel,” says Tang. “Also, if you have hEDS, your shoulder might dislocate, which mine have.” As a result, Tang uses a rollator most often. It has also made public transit more accessible. “I’ll sit on a train seat and put my legs up on my rollator, so I can have my legs elevated,” Tang says. Stories like Tang’s make me excited to finally have mobility aids of my own. I’ve spent enough time fearing discrimination and robbing myself of experiences. People with disabilities deserve the basic dignity of existing in the world, using the tools that support our bodies, without fear of being judged or harassed. And even though I know this to be true, I also know what it is like to let stigma stop you from getting the care you deserve. If I can learn to take the next step in taking care of myself, I hope others can, too. |
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