I was recently speaking with a colleague who was uncertain of their relationship to publicly identifying as “disabled.” As I described my path to embracing the language of being proudly, openly disabled, I noticed I was beaming: My experiences with disability and Long COVID fuel my passion for disability justice. But the process to get here was arduous.
For decades, my relationship to the word “disability” was obscured by ableism. Although I lived with disabilities — multiple forms of neurodivergence — my whole life, I wasn’t diagnosed until my 30s. And even then, I didn’t comprehend those diagnoses to be disabilities.
I was already familiar, however, with medicine’s linguistic thorniness around disability. Shortly after my neurodivergence diagnoses, I abruptly developed myalgic encephalomyelitis (ME) and postural orthostatic tachycardia syndrome (POTS) — neither of which physicians took seriously, much less diagnosed or treated.
My family doctor said it was “normal to be tired as a new mom.” After extensive, physically hellish testing, a cardiologist told me “anxiety” made me lose my breath while walking or standing. My shame over being sick in our productivity-obsessed world — plus the dismissal of my very real physical distress — amped up the internalized ableism I hadn’t yet learned to recognize. A constant weight of humiliation swirled in my subconscious, tricking me into believing that my illnesses meant I was bad. Worthless.
Not surprisingly, when Long COVID came eight years later, it took me 15 months to finally begin to identify as disabled. If a disability version of a baby queer existed, that was me. I was navigating with a limited understanding of disability rights, and no connection yet to the language of disability justice.
For the first time, I had neither the energy nor desire to be angry with my disabled body. Instead, I was enraged at COVID denialists, and then, eventually, at everyone living like it was 2019. A year into Long COVID, I was reinfected, and my POTS worsened dramatically. Now there was no doubt I was disabled; I needed a wheelchair. I couldn’t leave home.
Although I was angry with the virus and society rather than my body itself, my thoughts slipped back into ableist language. COVID left me in a wheelchair. I feel defective. My body is broken. My brain doesn’t work. I’m wheelchair-bound.
Yet that second infection also propelled my disability consciousness to develop on fast-forward. And I wondered: Might there be a way to alter ableist language about disabled Long COVID lives and bodies? Or, at the very least, my own disabled body?
So I talked with disabled experts who’ve written about disability and language and surveyed The Sick Times readers about their feelings around the language often used for our experiences and our bodies.
And I wondered: Might there be a way to alter ableist language about disabled Long COVID lives and bodies? Or, at the very least, my own disabled body?
To explore alternative linguistic realities, I interviewed Nisa Malli, a Canadian researcher and writer with Long COVID, who writes poignantly about language in her newsletter The Impairing Curse.
Malli stressed that people with Long COVID may struggle with naming or describing their experiences, as this is “a population with high rates of ongoing brain damage and cognitive impairment impacting verbal and written communication.”
“[Long COVID is] so inconceivably complicated and isolating for patients, so injurious to clear thought and speech … it is often impossible to communicate to someone outside the injured body and its intimate sick rooms,” she said in a speech.
I understood. Early on, because of interacting with the medical system, I quickly adopted medicalized language to describe my new life. For drawn-out periods after each of my infections — and whenever I crash, like from a weekly shower — I’m “bedbound” or “bedridden.” Cambridge Dictionary’s definition of “-ridden”: “full of something unpleasant or bad.” The rest of the time, other than sparse outings that consume more energy than I ever actually possess, I’m 99% “homebound.”
While I dislike having to adapt language around my body to the medical system, Malli says that what I’ve done is essential to survival. The language we use is a key, transmitting how sick we are to those with the power to connect us with care, treatment, and social supports, she said. She said the way we speak about our disabled and sick bodies is “inevitably wound up in capitalist logics” and emphasizes “our inability to work” rather than “the language of suffering.”
As I began to understand that I loved and valued my disabled body, imagery of confinement to my bed or my wheelchair, or physical restraint in my home, felt like an accomplice to the ableism excluding me from society. Not everyone finds this language offensive, but as an abuse survivor, “the language of … nonconsensual bondage” (as autistic disability advocate and author Leah Lakshmi Piepzna-Samarasinha calls it) sets my blood to boil.
In the Sick Times survey, readers explained which disability-related terms bothered them most — and some responders were unfazed by words I found upsetting (such as “bedridden” or “homebound”).
“I have no interest in trying to make my situation sound positive as I feel like that would minimize my suffering,” one wrote. Another echoed, “I actually like negative terms for negative situations. I don’t like euphemisms for misery.”
Readers described the early stages of disability language progressions: “I felt like a burden, useless, because I’m no longer able to work,” one wrote. “I couldn’t be of much help to my family … not productive — felt that resting wasn’t enough,” wrote another. One responder, Jaime, switched from saying “suffering” from Long COVID to instead using “‘living with Long COVID’…to de-center suffering as a determinative experience in favor of my capacities and potentialities.”
Reading through reader survey answers, I was fascinated by varied perspectives on my adversaries “bedridden” and “homebound.” Victoria wrote, “I say that I am horizontal, if it’s a non-medical person or my friend. Sometimes I say floating (my feet never touch the ground). I don’t have issues with someone saying I’m bedbound or bedridden. I don’t wish to sugarcoat the lived experience of being confined to a bed because of the world’s inability to make disabled people a priority.”
“Homebound may sound like a nice vacation to many. Just pottering around about the house,” Els wrote. “Patients are described as ‘not economically active’ and made to feel useless. We also cost ‘the economy’ trillions. My life lost to ME and COVID does not really count.”
An anonymous reader preferred “homebound,” saying, “Frankly, it’s miserable. Our ableist society is perfectly fine with it remaining that way … I want people to sit with the fact that I am homebound because there is no treatment for our illnesses and possible reinfection around every corner.”
I want people to sit with the fact that I am homebound because there is no treatment for our illnesses and possible reinfection around every corner.
anonymous reader
Piepzna-Samarasinha told me a story about a revelatory language experience from when they were newly chronically ill. Invited to a poetry reading, they brought a poem filled with shame “about this horrible, wretched body.” But others at the reading, on the contrary, had brought “these feisty, sexy, bitter complicated crip porn pieces,” they recalled. Inspired, Piepzna-Samarasinha ripped up their piece and rewrote it.
“The first time I heard about disabled people saying ‘crip,’ I was like, ‘Yeah! That’s like a fuck-you to shame!’” Piepzna-Samarasinha said. “It’s a fuck-you to ‘differently abled’ or ‘handicapped.’” Disabled “linguistic intervention” is powerful, they said. “I want us to keep creating our own words and our own language,” rather than using pre-existing medicalized terminology. “None of [that] shit is made up by us. I want us to be able to be the ones writing the books.”
Piepzna-Samarasinha appreciates terms created by disabled people, such as “neuroweird,” “sick and disabled” (coined by poet and activist Billie Rain), and “neurodivergent.” “Neurodivergent” was coined by Kassiane Asasumasu, who wrote of the word, “It is not another damn tool of exclusion. It is specifically a tool of inclusion.” My personal favorite is the abbreviation of disability community: DisCo.
I want us to keep creating our own words and our own language … None of [that] shit is made up by us. I want us to be able to be the ones writing the books.
Leah Lakshmi Piepzna-Samarasinha
In that vein, I asked readers to imagine replacements for “homebound.” Responses ranged from bafflement to darkly humorous to pragmatic.
“Unoutside???” wrote one. “Staying-at-home patient?” proposed Ellen from the Netherlands. “Stair challenged?” wrote Rose. Another suggested, “imprisoned in my house.” Els added, “House arrest for life. An invisible electronic ankle brace that shocks me into misery when I cross boundaries that are often even invisible to me.” Mud suggested, “Professionally sick/ill … homebound due to abled people’s refusal to mask.”
Some respondents had existential takes. Sarah Ecker wrote that home is her “sanctuary … where I’m at peace.” André Saravia, an ICU nurse and founder of Long COVID Chile, added that being away from home poses physical, social, and cognitive challenges. “Understanding that our body ‘rejects’ these three simultaneous stimuli makes us want to be in a safe place … and many times that place is our home.”
Finally, others’ imaginations soared. “Domestic Resting Goddess / Chief Executive Rester,” proposed one. That reminded me of Piepzna-Samarasinha’s latest book, The Future Is Disabled. “Why is it so bad to be linked to something gorgeous — a wheelchair, a home, a bed — that makes you fly?” Piepzna-Samarasinha wrote in the book. Of their pandemic experiences, they continued, “My life has gotten beautifully rooted in my home, garden, and land. And it has been better for me.”
“What makes [being bedbound or homebound] curse-like,” Malli said, “is the isolation … and the isolating social norms around long-term illness in which collective care falls away over time and people are forgotten.”
With an estimated more than 400 million people living with Long COVID worldwide, we’re unlikely to have consensus on language to describe our bodies and realities. Yet I was heartened to find overlap between my and Piepzna-Samarasinha’s imaginations. We’d both dreamed up replacements for “homebound,” and we’d each envisaged, independently, a phrase that strikes me as magical: “home rooted.”
Many of us with Long COVID have shed shame and internalized ableism to redefine our bodies and our disabilities linguistically. By doing so, we are helping the next waves of people who will develop Long COVID — because, heartbreakingly, there will likely always be a next wave — to test their own language needs and demand the respectful descriptors they deserve.
May we all find the language that makes our disabled bodies sing and feel seen.
May we all find the language that makes our disabled bodies sing and feel seen.
Lygia Navarro is an award-winning disabled journalist working in narrative audio and print. She has reported from across Latin America, North America and Europe, and is an editor with palabra, the multimedia outlet of the National Association of Hispanic Journalists.
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