Imagine you need to send a letter. The mailbox is only two blocks away, but she feels the task is insurmountable. Every time I walk I get air hunger, I get dizzy and headaches, and I keep blanking out my return address zip code anyway. So you’re sitting in your kitchen dejected because you couldn’t send a letter, missed a deadline, or canceled an appointment. Several months have passed since I was infected with the new coronavirus. Shouldn’t you be feeling better by now?
Long-lasting COVID-19 is a new disease with diverse and confusing symptoms, an uncertain prognosis, frequent fluctuating symptoms, and whose definition is not yet agreed upon by the public. And in many cases it malfunctions. In a recent survey, 1.6% of American adults said their post-COVID-19 symptoms were “significantly” limiting their daily activities. This degree of confusion is consistent with the definition of disability in the Americans with Disabilities Act: “A physical or mental disability that substantially limits one or more major life activities.”
However, for many previously able-bodied people experiencing a long COVID-19 illness, describing themselves as “disabled” has proven to be a complicated decision. This country is not disabled friendly. American culture and institutions tend to operate on the belief that human worth derives from productivity, physical performance, and cognitive performance. This disability discrimination was especially pronounced in the early months of the pandemic. Lower priority explicitly Certain handicapped groups require ventilators. Despite her ADA being passed in 1990, people with disabilities still face barriers to accessing jobs, health care, and even dining with friends at restaurants. Most of our cultural stories see obstacles as either hardships to overcome or tragedies.
Incorporating disability into identity can therefore require a lot of reflection. Lizzie Jones, who completed her PhD in disability studies last year and now works for an educational consultancy, fell 30 feet a week before graduating from college, shattering half of her body. She says her own accident caused her “fundamental identity change” as she transitioned from trying to get her envisioned life back on track to envisioning her new life. told me he urged
These are the sort of shifts in mindset that Ibrahim Rashid struggled with after contracting COVID-19 in November 2020 while he was a graduate student. He battled debilitating symptoms for months, but even after applying for disabled housing to complete his degree, “the word scared me so much,” he told me. told to Rashid feared that people would treat her differently or lose her internship offer. Most terrifying of all, calling myself disabled felt like an acknowledgment that the long-running COVID-19 pandemic wasn’t going away suddenly.
Outdoor writer, travel writer and mountaineer Aaron Teesdale has also struggled with identity issues since contracting COVID-19 in January 2022. For several months, he spent most of his time in his remote-controlled bed, looking out the window to the Montana Mountains in the forest where he once skied. Now he is slowly recovering from fatigue, but he had to take Ritalin to talk to me. He didn’t yet understand what his disability meant to him, whether it simply represented his current state or whether it reflected a new and deeper part of himself. Not knowing his prognosis made the calculation even more difficult. “Maybe I need a little more time before I say I’m disabled,” he said. Well, who am I?“
The long duration of COVID-19 can come and go, and people are scrambling to adapt. It does not conform to the stereotype of disability as static, visible, and dual, that is, wheelchair users as opposed to pedestrians. In addition, the fact that the new coronavirus infection is protracted is often not noticed in casual exchanges, forcing long-distance transporters to struggle with information disclosure and the possibility of passing as able-bodied. One such long-term resident is Julia Moore Vogel, program director at Scripps Research. He was initially hesitant about the idea of getting a disabled parking permit. “My first thought was I am not handicapped because I can walk,” she told me. But if she walked, she would be exhausted for days.
Once she got over her fears, she began to feel empowered by recognizing that she was disabled. Getting her permission was “one of the best things I’ve done for myself,” Vogel told me. She drove the kids to the playground and parked nearby so she could sit and watch them play. After much therapy and dialogue with other disabled people, Rashid also came to accept disability as part of her identity, and she now speaks and writes about her chronic illness.
Usually after a scientist names a disease, a community around it, including advocacy among those disabled by the disease, is born. It wasn’t until 2020 that the term spread through hashtags and advocacy groups for the first time that the long COVID-19 upended that order. Instead of doctors telling patients whether their symptoms corresponded to a particular disease, patients began telling doctors what symptoms their illness entailed. And there were many symptoms, ranging from life-altering neurocognitive problems and dizziness to a mild persistent cough.
As the long-running COVID-19 network blossomed online, members sought support from the wider disability rights community and began donating fresh energy and resources to those groups.People who have fought the same battles for decades sometimes bristly Long-distance migrants were given greater political capital, but their advocacy was universally short of other disabled people. But for the most part long haulers were welcome.
Participating in conversations with people with disabilities “made me realize I was never alone,” said Ellis Eady, an author and artist who works for a family planning organization. Edie, who is queer and black, found that the lingering COVID-19 pandemic interacted with the challenges she already faced with her identity. So they asked black women with disabilities for advice on interdependence, mutual aid, accessibility, and dismissal from doctors, which is common among women and people of color.
The disability community has a long history of supporting people through identity changes. Lia Lakshmi Piepuzna-Samaracinha, author and organizer of disability trials, struggled with the heavy question when she became newly disabled: “Will I be able to make a living?” told me it was done. Can I Data? Her feelings of isolation and fear disappeared only when she met other young disabled people. They taught her how to use her creativity in “hacking the world”.
For long haulers experiencing this transition for the first time, the process can be daunting.Rachel Robles, Contributor A long COVID-19 survival guideshe told me that for the first few months of her long COVID-19 illness, she “woke up every day thinking, Now, is today the day you left my body?“Thinking of herself as disabled didn’t make her long covid-19 disappear. But a heart condition prompted her to return to gymnastics, which she had quit decades ago.Even if she can’t lift her hands above her head sometimes, and dive rolls aren’t in her future, so be it. Maybe gymnastics is about enjoying what your body can do, rather than yearning for what your body can’t do. “It was something I never imagined,” he said. And if she had just focused on when she would recover, she would never have done that.
It’s a natural reaction to illness, especially one with an uncertain course like long-term COVID-19, that we want to improve. But focusing solely on abandoned past identities or unrealized future identities can undermine our curiosity about the present. A better way to think about it is, “What can I do with the body I have and what I may not know I can do yet?” Piepuzna-Samaracinha said. “Who am I now?”
