By A. H. Reaume

Becoming disabled after a head injury at 32 was like entering into multiple abusive relationships all at once. A close family member spread the rumor that I was faking the severity of my injury for attention, even when things as simple as taking a shower forced me to lie down for up to an hour afterward to rest. 

Heard of Spoon Theory? This essay by Christine Miserandino created the popular disability metaphor. 

During that period, my days were organized around hours of grueling physio and then collapsing in exhaustion, unable to get up to go to the washroom. I was often physically unable to speak and process words without difficulty and pain — a condition called intermittent aphasia. If my mom wanted to talk and I told her I wasn’t physically able to, she sometimes called and yelled at me because I wasn’t calling her enough. When I tried to tell her I loved her but had no capacity to speak — and every word I tried to say caused me an incredible amount of pain — she made fun of my stutter and slow speech, accusing me of faking all of it for sympathy.

Ableism by family can hit the hardest. At them, T. Sydney Bergeron Mikus grapples with family acceptance.

There were so many ways that the people and institutions that were supposed to love or accommodate me failed to keep me safe, secure, and loved post-disability. The full story includes a number of prominent writers in my local literary community spreading a rumor that I had made up my disability. It went on for so long, I was forced to share my medical records with other disabled writers and have them publicly attest that everything I had said about my disability was true.

I wanted to kill myself. 

If I had, I would have been a statistic. People with brain injuries are 300% more likely to die by suicide than the general public in the first six months after their injury. Some studies suggest it’s because of changes in brain chemistry. I’m skeptical of that claim. I wanted to die because the way people and institutions treated me after I became disabled was unbearable. 

Brain injuries are often referred to as an invisible disability. Their symptoms are intermittent and unpredictable. You look fine and sometimes can function in a way that appears normal to other people. But then suddenly you are unable to speak or you can’t move your limbs properly. Or you experience sudden and extreme fatigue and can’t move for hours.  

It’s terrifying to live in such a body. But it’s more terrifying to live in a world where people assume you’re performing your body’s collapse. It’s dehumanizing when people routinely treat you with contempt in the moments when you need the most care.

Some philosophers call the disbelief of invisibly disabled people a form of “epistemic injustice.” Coined by Miranda Fricker, the term is used to describe the systemic undervaluing of a minority group’s authority and assertions — and the characterization of that group with unwarranted distrust. 

My friend Erin and I talk a lot about what’s needed to combat this epistemic injustice when so often our attempts to do so in conversation with loved ones and friends aren’t successful. “The problem is that when fighting ableism interpersonally you can only say in a dialogue the equivalent of a page,” I told her once. “But there are tomes and tomes of ableist ideology that people have learned in their lives. The only way to combat that is to write our own tomes. We need to show how ableism often destroys disabled people’s lives and we need to tell people what a world without ableism might look like.” 

It is especially important to have these conversations about ableism and invisible disability now, as we continue to live through a pandemic. It seems everywhere I look, public health officials are making decisions that completely disregard the lives of disabled people. Meanwhile, a massive number of people are developing long COVID. I’ve seen tweets from people with long COVID who talk about how they want to die because no one believes that their symptoms persist  — or no one is willing to help. We don’t help long COVID sufferers because we think disability is a burden, even as governments have created the conditions for a mass disabling event via COVID inaction. 

Disability is intersectional. When I became disabled, I was in a position of privilege: I was a mid-career professional and got six months of sick leave at my full salary to recover. My savings could pay for necessary treatments that weren’t covered by my provincial health coverage or my employer’s supplemental plan. And I didn’t experience racism, or homophobia, or transphobia, or any other form of marginalization on top of ableism. I believe that a big reason for why I am still here today is because of my privilege. Disabled people who are less privileged should not have worse outcomes. 

This is a glimpse at what ableism is like for me, and I hope this reading list will show you what it’s like for other invisibly disabled folks. These essays are a tome. Start your unlearning here.

“This is What Disabled Looks Like”: The Sometimes Hard-to-See Line Between Visible and Invisible Disabilities (Zipporah Arielle, Medium, July 2019) 

Have you ever seen an image of a person standing up from a wheelchair, accompanied by a joke that says a miracle just occurred? The humor in this meme relies on a person’s lack of knowledge of ambulatory wheelchair users, or people who can walk in some circumstances but are unable to walk safely or without pain for long distances or on days when their symptoms are flaring. 

Ellen Samuels’Six Ways of Looking at Crip Time” in Disability Studies Quarterly is a classic piece on the altered temporalities of disability. 

We have been taught that disability is binary — that wheelchair users have no use of their legs, or blind people have lost all their sight. Some disability is visible, yes, but it’s also much more diverse and dynamic. Arielle examines the wide gap between what we believe disability looks like — and what it actually looks like.

Regardless of if I’m sitting, standing, walking, dancing, wheeling, laying down; regardless of if I have on makeup, or if I’m barefaced with dark bags under my eyes; no matter how fat I am; no matter what mobility devices I do or don’t have with me; no matter what I look like: that is what disabled looks like. Because no matter what someone else thinks disabled “looks like,” it doesn’t change my reality of being disabled, and needing accessibility and medical care.

Am I Disabled? (Joanne Limburg, Aeon, December 2020)

Brooke Knisley’s extremely creative essay written as a movie script, “Bad Brain Blues,” negotiates the anxieties of disclosing a head injury.

It took me eight months to call myself disabled, even though I had been on disability leave after my head injury and needed workplace disability accommodations when I returned. On an online form, Limburg confronts the question of whether or not she is disabled — and is unsure of what to say. She talks through her own internalized ableism around what it means to be disabled, and her unique experience of disability as an autistic person. She grapples with how she should navigate an ableist society when disabled people lose no matter what they do. Throughout the essay, she vacillates between “yes,” “no,” and “prefer not to say” — showing how disclosing disabilities is something many people with invisible disabilities struggle with.

Why would you want to own up to an ‘underlying condition’ that apparently makes your death from unrelated causes less regrettable than someone else’s?

Why would you volunteer to be written off?

Why would you volunteer to be pitied?

Even If You Can’t See It: Invisible Disability and Neurodiversity (Sejal A. Shah, Kenyon Review, January/February 2019)

So many people with invisible disabilities pass as nondisabled. Shah was diagnosed with mental illness and hid it for years, never truly accepting her diagnosis. She reflects on the particular challenges of being a disabled woman of color in the academy, like how she was pushed to support diversity efforts, which didn’t leave her with enough energy for her work — leading to her contract not being renewed just as she was about to apply for tenure. She wonders if disclosing her disability and asking for accommodations would have benefited her, but knows enough about ableism to anticipate the exhaustion she would have experienced when advocating for herself. 

No one has to know your diagnosis—it’s true. But everyone deserves to be seen and known. And to get any support, you have to be willing to say it, claim it. Disclosures of cancer elicit sympathy, gifts of casseroles, rides to the hospital, or other support. Disclose a mental illness and observe the response. Our culture finds mental illness distasteful, unfortunate, a moral failing. Managing a mood disorder is exhausting—a taxing second job. It’s also a job invisible to most people in my work and personal life. Would I rather be neurotypical? Maybe; it would be easier. But would I be me?

Police Violence is a Disability Justice Issue (Derecka Purnell, Boston Review, September 2021) 

Discrimination on the basis of the intersection of disability and Blackness has a long history. Purnell cites examples of how during the Civil War the Union Army didn’t rescue Black people they believed were disabled, leaving them in the “care” of slave owners rather than freeing them so they wouldn’t be a burden on the federal government. Police violence affects racialized disabled people more than other groups and policing also disables people. Purnell traces why police violence is a disability justice issue in this moving and well-researched piece. 

Like slavery, policing also disables people. On a global scale, the United States exports policing tactics and militarism that inflicts disability as a tactic to gain imperial and colonial advantages. Women and gender studies professor Jasbir Puar describes this as debility, “bodily injury and social exclusion brought on by economic and political factors.” Death and the fear of debilitation can discourage and dissuade occupied peoples from resisting the nations that colonize them.

How Colonial Visual Cultures Have Worsened This Pandemic and What Needs to Change (Khairani Barokka, Disability Visibility Project, April 2020)

Barokka, a scholar working on visual cultures, colonialism, and disability, writes the most compelling exploration I’ve ever read of the history of ableism against people with invisible disabilities, and highlights the ways racism and colonialism intersect. She encourages us to consider the possibility of vulnerability in every picture and every person and suggests that changing our assumption of nondisability when pain or impairment isn’t visible could save lives.   

I write and speak about how the central, core thesis of my PhD–that there is the possibility of pain in every picture, especially in images of enslaved colonial subjects, especially in bodies coded as brown and femme–has been met with defensiveness and/or disbelief and/or the need to couch that possibility in “visible signals.” Meaning, if someone is sitting in a tilted manner, that might show discomfort. Yes, because every person you meet is possibly in discomfort–regardless of “cues.” 

How Long COVID Forced Me to Confront My Past and My Identity (Kathryn Bromwich, The Guardian, November 2020)

The impacts of COVID are often explained in binaries. You either die or you survive. If you’re not hospitalized, you have a “mild” case. But, as reported, many people who have had supposedly mild cases of COVID and are counted in the numbers of survivors are living with the impacts of COVID everyday — in ways that greatly affect their ability to live and work. Bromwich recounts her previous experiences of disability and how long COVID made her change how she thought about disability. She also explores the uncertainty of living with long COVID. 

The terrifying thing about the virus, and its aftermath of chronic pain and post-viral fatigue, is that it is unknown and incurable. You can hear the hesitation in your doctor’s voice when you ask how long it’s likely to affect your body; you both know there is no answer.

You Are Not Entitled to Our Deaths: COVID, Abled Supremacy and Interdependence (Mia Mingus, Leaving Evidence, January 2022)

Want to read more work from disabled voices on the pandemic? Read Emily Ladau’s Pocket roundup: “We Cannot Afford to Ignore Disabled Voices.”

There are few people as eloquent as Mia Mingus, who has long been a vocal champion of disability justice. In this affecting essay, Mingus discusses the ableism inherent in current pandemic policies that suggest we must learn to live with death and debilitation from COVID. Mingus challenges individualistic notions of freedom and responsibility, and the idea that disabled people are expendable. That no one is entitled to anyone’s death shouldn’t be a controversial statement; the fact that it is says a lot about our pandemic ethics.

The solution cannot be that everyone has to get COVID. That is eugenics because many disabled high risk people will die and those who do not die will have serious complications and lifelong impacts to their health and wellbeing via COVID and the possibility of long COVID. Do not buy into this eugenic thinking that expects the most vulnerable to be sacrificed. Long Covid is real and it can happen to anyone.

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A. H. Reaume is a disabled writer whose work has appeared in the anthology Disability Visibility: First-Person Stories From the Twenty-First Century. Reaume is a guest columnist at Open Book and is currently working on a memoir and a novel. She can be found on Twitter at @a_h_reaume

Editor: Cheri Lucas Rowlands