May This Pandemic Help Us Abandon Ableist Language

It shouldn’t have taken a pandemic. It shouldn’t have taken this global health crisis to jolt people into realizing that universal healthcare is a human right, that gutting social services and privatizing healthcare is a horrendous idea. That pillaging the Global South in the name of a mythic ‘West’ endangers millions of lives. It should not have taken the deaths of over one million people globally—and rising—for the world to realize that disabled people had the keys to a better society all along.

In this Twitter thread, Imani Barbarin, a disabled activist and the creator of #ThingsDisabledPeopleKnow, writes, “Every fucking accommodation you have access to, you owe to disabled people.” It is shocking and infuriating to disabled people—myself included—how quickly workplaces and institutions have switched to online operations, how so many sectors of society have adapted to Covid-19 now that non-disabled people are getting sick, now that non-disabled people are unable to live the lives they feel they deserve. “The lives you’re living at the moment,” writes Barbarin, “we’ve been living a lifetime.”

I have hurt myself physically, mentally, and emotionally far too many times, over and over, trying to get my access rights from institutions who have united to change or adhere to policies. Before Covid-19, these policies were ableist and abusive and unchangeable when it came to my rights. But now, I dearly hope these new policies will continue once the pandemic ends.

For instance, being able to work from home is an important component of protecting myself from injury, as it is for many chronically ill and disabled co-workers. Yet, as my colleague Annabel Crowley pointed out in our event Art School In A Pandemic, approval to work from home is measured against considerations of “reasonableness” by ableist institutions. Thus, as our bodyminds are framed by ableist perspectives, our urgent requests are not provided and have been seen as “unreasonable” for years. Then came this pandemic. After hurting ourselves for years by working in a way that non-disabled people see as “reasonable,” the ability to work from home is now granted to all. No questions asked, and so swiftly. Solely because non-disabled people needed it.

And all these years, when access has been and still is denied by employers, what isn’t seen nor accounted for is the suffering of disabled and chronically ill people in our own homes. After an event or a day of work, our bodyminds bear the brunt of pain and distress. For a meeting one day, I requested that the pathway be step-free. But because of a mistake in the access information given to me, I had to climb a flight of stairs. After that day, I spent days of painedness in bed. As I’m generally in bed to manage my conditions, and perhaps because I’ve grown unfortunately accustomed to this, only my closest confidantes will be informed.

If someone punches you in the face, it is taken seriously. If someone injures you through lack of access, so many people ignore or downplay the all-too-violent effects. These effects, in my own experience, have often been physically and psychologically devastating, traumas that echo, with long half-lives, because they have often been unacknowledged. What counts as violence, and how that word is utilized, archived, distributed, matters.

And yet, disabled people are still belittled by even the non-disabled who claim “awareness” and “understanding” of disability and healthcare justice. Some are beginning to see that our theories and conceptual frameworks are not frivolous nor slight, but fundamental to the wellbeing of every single living thing on this planet—and will write sentences like, “We tend to legislate for the strongest among us, not for the weak, vulnerable, and sick,” and say words like, “We must protect the weakest among us.”

What counts as violence, and how that word is utilized, archived, distributed, matters.

It is assumed that the audience for these statements are non-disabled, non-chronically ill. And that we—who are chronically ill and/or disabled—are populations to be treated, taken care of, not even in the NGO-speak of “stakeholders,” but as charity objects. The nuances and political subtleties of our lives, the breadth and depth of diverse experiences among us, the heritages of disability cultures, are disregarded.

Often, this manifestation of savior culture assumes that our communities have not already been, for many lifetimes, making urgent demands, organizing politically, and creating art. Their question is: “How do we help these unfortunate populations?” Instead, it should be: “How do we amplify existent voices?” And even when someone self-declares as an “ally of disabled people” in their social media bio, it belies what I believe is a fundamental principle of allyship: as something to be bestowed upon you by the community you are in solidarity with, rather than self-declared.

Please, non-disabled people, heed what we have been saying for lifetimes: Let go of this condescending bullshit. Give us the fucking platform. Now is the time. Let disabled people take the lead instead of treating us all patronizingly as charity, in all our infinite varieties of bodyminds and societal contexts. Stop talking about what these societal changes mean when you’ve just been awakened to how society functions for those of us who live mostly indoors, and whose mobility does not look like yours.

This is of paramount importance at a time when so many are becoming chronically ill from Covid-19 and complications thereof, giving rise to the patient-created term “long Covid” to refer to a more nuanced, accurate understanding of Covid-19’s effects than “post-Covid-19.” The way we understand the notion of “cure” needs to be as nuanced as the ways a bodymind experiences illness. This requires a wholesale rejection of the eugenicism that has been devastating disabled populations; in the UK, a BBC article cited that two-thirds of the deaths from Covid-19 have been of disabled people, and that disabled women living in the UK are eleven times more likely to die of the pandemic (and that’s not even accounting for additional factors of race, class, etc.). We are eleven times more likely to die, yet instead of focusing on care for us, mainstream media so often ignores the decades-long anti-disability sentiments, and attendant economic deprivation, that has intensified a massacre of disabled people.

For all that “care” has become a buzzword in the arts, the most care-laden, thoughtful, and kind artistic events I’ve been a part of have all been disability-initiated and -led. And I’m not sure “care” as a word is even explicitly invoked in these events, because such spaces practice caring for different bodyminds, in a fundamentally pro-community, anti-capitalist way, that permeates an event without having to be said.

Events like these include those created by movements such as Jakarta’s Barrier-Free Tourism, which promotes accessible culture, and other initiatives begun and led by disabled activist couple Cucu Saidah and Faisal Rusdi; these include the events run by Lydia X.Z. Brown and Alice Wong’s Disability Visibility. Because when an event is disability-led, there is the greater likelihood that care is there in the form of barrier-free physical access, captioning, sign language translation, comfort breaks, image description, and so on.

This pandemic—with its acute reminder to disabled, chronically ill people, and those otherwise high-risk, of the necessity of not compromising on what we need for survival—reminds me how important it is for all of us as disabled communities not to consider true friendships those that only function because we “act”/“appear” abled. Remember, what people say “appears to be” abled behavior is also disabled behavior, because abled understandings of what is “visible” disability are inherently untrue.

Innumerable people have told me I “don’t look disabled,” to which I am learning to respond, “Well, no, this is what a disabled person looks like.” This caution towards friendships and other relationships that only function based on our proximity of behavior coded as “abled” has been a realization for me due to people who, despite having known me for years, still say things like, “You aren’t sick a lot lately, are you?”—as though I can turn on and off the continuous condition of being chronically ill, as though people always proclaim to the world when they have a bad flare-up, which can be both frequent and kept private. People who still question what you do choose to reveal. Or people who never ask how you are, or acknowledge that your bodymind’s needs are different to theirs, that you socialize differently.

For those who are wondering “what disability I have,” please refer to the work of Mia Mingus on access intimacy, in which it is emphatically stated that we shouldn’t have to tell anyone the ins and outs of our bodyminds, yet are forced to give up access intimacy, constantly, in order to survive. There was a time when I’d be forthright about many bodily details, but after almost a decade of identifying as disabled, I feel repeatedly used, by giving up so much of this intimacy to non-disabled strangers who are “curious” and will not empathize, let alone take action.

In rationing precious energy, we all need to remember our eternal right of refusal: refusal to give up intimacy, to give up personal details, to always cater to a white, non-disabled, or otherwise dominant cultural narrative rather than our own. We need to demand more of non-disabled people, while protecting ourselves and our time as much as we can.

We need to demand more of non-disabled people, while protecting ourselves and our time as much as we can.

Reparations can start by paying attention to language. Here, I have noticed so many well-intentioned people, who wish to call themselves allies, call for disability justice in ways that are still deeply ableist. For instance, one might read: “All workers need to be in line with disability justice, to understand who we are excluding.” This very sentence is addressed to a “we” that excludes disabled people. It is not sufficient.

This is an example of how, when non-disabled people begin to realize disabled people’s humanity, and want to repair the harm they’ve caused, it stings. It hurts.

“Disability justice,” as a term in English, was coined in North America by the queer crips of color collective Sins Invalid. It contains ten principles, including anti-capitalist, liberatory politic. But other formulations of the same have existed in pre-colonial cultures, such as in Indonesia, where Western colonial medicine wiped out many understandings of non-normative bodyminds as spiritually important, as the oracles we can be.

Disability justices can be, and are, plural.

And because there are infinite varieties of bodyminds within disabled communities, and multiple varieties of language for disability within each of the thousands and thousands of languages that exist, we, disabled and chronically ill people, make mistakes, too. All the time. I remember many of mine and am deeply and sincerely apologetic. I’ve used incorrect terminology for people with different bodyminds to mine; I’ve let other disabled people down when my bodymind has needed rest instead of being able to fulfill an expectation—making the mistake of not delegating or communicating in time or properly. I’ve forgotten to include language about access information when promoting events. The list goes on.

At the same time, I recognize that there are surely many more times I have caused harm with my own language unknowingly, because, for instance, I am not autistic, nor am I diabetic, nor am a little person. I don’t understand many things about such communities of care. I am learning, as we all are, as we all must. It’s messy to do so. It’s necessary. All we can hope for is that we do it with as little harm as possible.

People are dying, and have been dying. Disabled people have been under threat from how capitalism wreaks havoc since the system’s inception. And now it is time to let us lead, to take us seriously, to change our language in every language—and to keep this respect and reverence for disability justice frameworks, disability studies, disability cultures, intact. We need these changes now, in our language, in all other systems, in this crisis. As disabled folk have been saying all this time, we’re all in such need of each other.

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