Why It’s Taking So Long
Today we publish two works by Johanna Hedva in tandem: below, the newly commissioned essay, “Why It’s Taking So Long,” and alongside, a revision of “Sick Woman Theory.” Their dual publication closes the past year’s explorations of maintenance of creative practice and models of experimentation. This began with Mandy Harris Williams’s essay “Re-Modeling” last summer, and has featured works by Alexis Pauline Gumbs, Tiara Roxanne, and Anaïs Duplan, and interviews with Laurel Halo and Astrit Ismaili. In “Why It’s Taking So Long,” Johanna Hedva reflects on the evolution and impact of their epic “Sick Woman Theory,” a centerpiece text of disability activism that took on a life of its own since publication in 2016. (In its new home, which you can find here, Hedva’s “Sick Woman Theory” features a resource-rich bibliography and links to translations.) The work these two pieces—an argument and its wake—do together, delineating all the ways radical ideas shape the speaker, make it both possible and impossible to move through the world, capture the very spirit of this editorial year.
The image above, created by Pamila Payne, is an interpretation of the original portraits Payne took of Hedva for “Sick Woman Theory,” which were styled by Rhi Jade. The image of the author as a ‘rage demon’ was created in conversation with Hedva. It is an icon, a signal that the burning of old ways must begin.
– Nora N. Khan, 2021 EIR
In January 2016, I published an essay that was my first attempt at thinking through the politics of chronic illness and disability. For the five years before that, I became disabled, by way of an injury and the onset and diagnoses of several chronic illnesses, some inherited. My text was called “Sick Woman Theory” because I realized that, despite not identifying as a woman, that’s how I was now seen—a sick woman. Before any of my other identities or occupations, and no matter what I said, did, produced, or defined myself as, I saw that I was now defined by society in terms of the care I needed—and that this was true for anyonedefined by care, whether they “gave” it or “took” it—and this was a raw fucking deal. By medical doctors baffled by my symptoms and dismissive of their validity; by social workers and bosses and other cogs in the wheels of capitalism who demanded the continuity of my labor while simultaneously denigrating me to the category of worthless because my body disrupted my labor’s continuity; by institutions who swept in to finesse my condition into something that could be rendered into an art-historical and cultural product; by friends, family, lovers, and enemies who didn’t believe it could be as bad as I said it was: I was now seen as malingering, a burden, a drain on resources, possibly faking it, certainly hysterical, a thing resplendent with pathology—simply because I had a body that needed more than it was supposed to need. Who decided this—who exactly was the arbiter of what a body was supposed and not supposed to do, need, and be—decided a status that was not in fact produced by my internal condition. No, this was the accumulation of a thousand tiny and not-so-tiny external events, tones of speaking, methods institutional and otherwise of disregard and dismissal, mechanisms built to dole out pathology to a thing like me. As a sick person, I watched as the perceptions of others amassed and clustered onto me, like a little pile of arrows that got aimed, shot, and stuck. If one arrow was tweaked, they all started to move, and it hurt, the pain went deep. After a while, I couldn’t tell where the pain came from, if it originated from somewhere inside me, or was caused by something outside of me that had gone in too far. I knew that this was how ideologies of oppression work: they seep into you, get into your cells, hunker down and dig in and make a home out of you. I also knew that, no matter where it came from, the hurt was real, it sounded like my own voice, it lived in me now. But it was pain that had very little to do with my actual illness, and what fucked with my head the most was realizing that the internal condition of my illness—which felt vastly multiplicitous in what it made within me, all the worlds of experience it took me to—had been erased in favor of the external value placed upon it, which was carcerally narrow and confined to mean a set of things that I did not particularly agree with, nor consent to being. This erasure did not happen by accident. It was the intended outcome of a larger system of institutions—medical, cultural, capitalist, statist—and the ideologies that feed them—classist, racist, white-supremacist, imperialist, colonial, patriarchal, cis- and heteronormative, sexist, ableist. For the benefit of these systems, I realized that the most common and universalizing condition of life—that our bodies are fragile, get sick, need rest, need support, that they need at all—had been twisted into the measure of one’s own individual failure, something to be ashamed of and sorry for and kept out of sight until the symptoms passed and things could return to “normal.” By design, this is how the world is built—for whom? Why?
I began writing on December 18th, 2014, in a flare, lying in bed. Over the next year, the essay was rejected by over a dozen publications and some of the biggest names in feminism before finding a home in Mask Magazine, which was ad-free, online, and run by a volunteer group of anti-capitalists in their twenties. I was paid $81, the highest amount that Mask paid its writers. Because there were no ads, no one made any money, even as that essay went on to become one of Mask’s most viewed, with hundreds of thousands of clicks. It has since been translated into ten languages, making its way through covens, hackerspaces, queer hair salons, and crip collectives around the world. It is included in anthologies published by prestigious presses (one of which was edited by a person who’d originally rejected it), and quoted, cited, and taught widely. It is taught in a range of departments at universities, from ethics classes in medical schools (although with the anti-capitalist bits redacted, to spare the aspiring doctors a confrontation with too much “politics”), to courses in religious studies, design, literature, and feminist theory (where I’m told it is one of the texts that stirs students most vehemently to become anti-capitalists).
In the six years since “Sick Woman Theory” landed, my visibility—how I’m seen—by literary organizations, publishing houses, and art institutions—has expanded from “the sick woman,” to now, a sort of representative spokesperson for the disabled and chronically ill community. Within a week of its publication, I started to receive invitations to speak and write on the topics of care, illness, disability, and ableism, even though none of my work, besides SWT, was about this. I remember being invited to give a reading in Oakland, and when I said I’d like to read some of my poetry, the organizers shouted into the Skype call, “No! We want you to read ‘Sick Woman Theory!’” Editors from publishing houses, large and small, asked me if they could buy the Sick Woman Theory book. I said I hadn’t written it yet, but I did have two finished novels, a collection of poetry and essays, and another novel in the works. I asked if they would be interested in those, and of course, they were not. It was here that I learned the first of many lessons about exactly how the insidious twins of visibility and cultural capital work.
It was not lost on me that I—who passed as abled, white, and cis—was being invited into places where other disabled artists and activists—who did not pass—were not. I had written the kind of theory-heavy text that is somehow democratically palatable, and its reach shocked me at first. Suddenly my audience included people I would never have before imagined writing to, for, or with. The places to which I was being invited felt exotic and foreign, and not a little hostile: I laughed that I was dressed for the underground kink party in the dungeon but was finding myself at dinner parties with stiff white tablecloths and respectability politics. For instance, I noticed that, on panels about disability hosted by more mainstream organizations, programmed next to, say, a successful white woman who wrote about her migraines, I’d often be the only person who publicly identified as disabled, the token activist to round out the cast, albeit with my disabilities appearing to be manageably contained. Once a white woman in the audience at an event asked me what was the one thing I wanted abled people to know about disabled people. I said I would want them to know more than one thing. I found myself giving Ableism 101 lectures over and over and it made me want to scream. At some point months into the COVID pandemic, as I received what felt like the hundredth invitation to talk about why care is important, I tore at my hair and cried out to no one, “If you don’t know already, I don’t know what else you need to see!”
This blade of attention cut both ways. Once, onstage in conversation, my interlocutor used the word “crippling” to describe anxiety—which is an obfuscation of the word that is considered mildly ableist by the disabled community—and many months later, during another event’s Q&A, a person in the audience demanded to know why I hadn’t more sternly corrected the interlocutor for their trespass, as if I’d failed to successfully police that moment on behalf of anti-ableism. Once, I was one of the few white-passing people on a panel, and a white man in the audience asked me what I thought of “Angela Davis’s concept of intersectionality.” “Angela Davis’s concept?” I repeated the error while it sank in that he was asking me, and not the others, because he felt more comfortable speaking to a face that resembled his own. “Um,” I said, as I glanced down the row at my friend, a Black artist and activist that I share frequent side-eyes with. They were looking at me with a glint in their eye, and I passed them the microphone so they could correct him, which they did with as gentle a smirk as possible. We still laugh about this today.
I felt like an underground band who has an unexpected hit on the radio. I’d been working as an artist for over a decade at that point and publishing my writing since 2001, when I was seventeen. For the majority of my career, I’d enjoyed a small amount of attention from an even smaller audience, but they were devoted, as I was to them, and they loved me for my strangeness, my profligacy with genre, everything about me that did not fit into any category. Now, I was enjoying what felt like a huge amount of attention from a much larger audience who had only read this one text. I became legible as one thing. Squirming in that shining, singular spotlight, I tried to suggest that I had other songs, even whole albums, that might be worth listening to, but mostly the crowd just wanted me to play my one hit. A precious few seemed to want to listen to the other stuff. A young man with a chronic illness and a nonprofit experimental small press reached out, said he was a fan, and asked if I had a book. I said I had a strange novel about a hacker, written with no commas where there should be many, that no one wanted. He said he couldn’t wait. He published it, my novel On Hell, in 2018, and we became and are still close friends.
An agent found me in the swirl of Sick Woman activity, and not only had she read my other work, but she was also a writer, new to the industry and building her list as an agent. Her credits included being in a feminist puppet troupe with menstruating puppets. We got along like a house on fire. A few months in, we had a meeting about what to do with all these offers for the Sick Woman Theory book. I knew I wanted to write it someday, but first I wanted to finish the novel I was working on, and I needed to figure out what the Sick Woman Theory book should, and could, be. “I think I need five more years before I can even know what it is,” I told her. She advised me to do what was best for the book, what was best for me, and for this, I will trust her forever. We turned down the editors, some of whom worked for presses I had long dreamed of being published by.
“When it was offered to me, I saw only the strings attached, the price. I saw that they would want an illness memoir and not what I wanted to write, which was an analysis of ableism fractured through different literary forms that refused to be contained in a traditional genre […] I saw that they saw only my hit, my one piece that went viral, not my body of work, nor the range of subjects I was inquisitive about, nor the genre-fuckery I felt the most allegiance to, nor the long and varied career I was aiming for. In short, they saw the Sick Woman—not me.”
That was a turning point. I was a poor, queer, disabled, second-generation Korean-American artist and writer who had nothing to their name except six figures of student debt. I came from a long line of janitors, mechanics, nurses, and fortunetellers. I had medical costs that eclipsed my annual income several times over; the year that “Sick Woman Theory” was published I was on food stamps. My gross income on my 2014 tax return, my last year of grad school, was $5,730. In 2015, it was $7,173. In 2016, it was $9,255. I was a part-time freelancer whose disability kept them from working full-time, but I was ineligible for disability benefits because my conditions—endometriosis, fibromyalgia, chronic PTSD—were seen as not debilitating enough, not that bad. And I wanted to be published so badly, I thought I would have done anything. The editors in my inbox didn’t say any numbers outright, but it was implied that I could sell the Sick Woman Theory book for what would be called “a nice deal” in the publishing trades, and I would be set up for six months, maybe even a whole year to write my book. Money like that, security like that, a life like that, was something my ancestors and I could only dream of. It was a fairytale. But when you’ve been poor your whole life, and are descended from generations marked by it, you become street-smart. You know a scam when you see one because the whole world has been scamming you since birth. You’ve perpetrated plenty of little ones yourself. So, when these editors sidled up to me, a line of heat shot up my spine, and I knew it wasn’t what they were telling me it was. When it was offered to me, I saw only the strings attached, the price. I saw that they would want an illness memoir and not what I wanted to write, which was an analysis of ableism fractured through different literary forms that refused to be contained in a traditional genre. I saw that they’d want me to write a book with more answers than questions, which was the opposite of what I had. I saw that they’d want me to lead the parade of chronic illness to the peak of its trending topic, which, at that time, was just starting its ascent in the mainstream. I saw that they saw only my hit, my one piece that went viral, not my body of work, nor the range of subjects I was inquisitive about, nor the genre-fuckery I felt the most allegiance to, nor the long and varied career I was aiming for. In short, they saw the Sick Woman—not me. Since I’d never had, nor hoped to have, any money, it cost me nothing to keep that part of me—the poor part—intact for the sake of another part that felt infinitely more valuable.
A few months after SWT came out, I published “In Defense of De-Persons,” a fragmented, poetic text that I see as the shadow to SWT’s manifesto, and which was read by a fraction of SWT’s readers. I still think it is a much better piece, because it questions and undoes what SWT pontificates, and yes, I know that when I say that, I sound like Meryl Streep in Let Them All Talk, claiming that her most unreadable book is her best. After De-Persons, I didn’t write about illness again until two years later, when I published “Letter to a Young Doctor,” and then took another two-year break. I turned down everything that came in about illness and instead wrote about many other topics—Nine Inch Nails, the mysticism of mosh pits, Susan Sontag, astrology—reminding myself that promiscuity and curiosity, rather than expertise, are the primary functions of the mind’s reach that feel sustainable to me. I finally finished the novel I’d been working on since 2014 and sold it in 2021. A lot of the editors who turned it down said, “But we’d love to see the Sick Woman Theory book.” In 2020, I published Minerva the Miscarriage of the Brain, the collection of poetry and essays that no one had wanted in 2016. (One of the editors that had asked for the SWT book, who’d then ghosted me when I sent Minerva, recently tagged me in a selfie of them holding Minerva to their chest while lying in bed.) Because it spent four years being rejected, Minerva ended up taking a decade to come into the world, and this feels important about the way time works when it is propelled, not by money or fame or capitalist production, but by the conditions a body needs to be supported. If nothing else, my career has been a demonstration of that kind of time, the kind that divorces itself from the spurious capitalist conflation with money, the kind that demands rest, detour, refusal, long queer days and nights, and also insists on what it needs to be sustained, to stay interested and maintained and devoted. After taking a decade-long hiatus from music, I returned to it in my thirties, and this required a changing of direction not unlike the moving of a planet into a new orbit. When invitations came in to speak at a conference about care, or participate in a group exhibition about illness, I’d say that what I had to offer was a live doom-metal performance, take it or leave it—many did not take it.
It became easier and easier to accept these rejections. In fact, they started to feel fortifying, vindicating, of what is important about who I am. Alongside the greedy appetite of my mind, I am an all-in or all-out kind of bitch in terms of heart and body. I’m only interested in relationships that can have big things built upon them, and something easily forgotten about a career that persists is that it is a machine sustained through relationships like this. To me, what those relationships are, and how they feel, and if they can hang for the long haul, if they can carry the heaviest of weight, is what matters. I don’t want to do meaningful work with editors, curators, agents, or organizers whom I wouldn’t also want to have a long dinner with, go dancing and get sweaty with, talk about heartbreak, desire, and ambition with. If it’s just a job or a gig or a little hoisting up, it’s fine, I’ll forget their name afterward and they can forget mine too. But if it’s a book that I’m going to spend a decade pouring the blood of my mind into, that I’m going to push against the skin of my insides until everything breaks, I need to trust these bitches with my life, because that’s what’s at stake. Trust takes time. Bodies, of any kind, but certainly the ones that we endeavor to build around our creative projects, are fragile as fuck. There’s a little flame and a long black storm and I know I will walk through it most of the time alone, but it would be nice to have company for the part where the light comes.
Most of my friends were puzzled as to why I complained about “Sick Woman Theory” so much. One of them said, “You just made a really big rainstorm and a lot of bitches got wet. What’s the problem?” Some wondered why I didn’t cash in on my tiny moment. Even a small book deal would have been twice what I made in a year. And wasn’t this what every writer hopes for? To write a piece that lands with people, that, if only a little, changes the public conversation?
The only way I can explain my disquiet is to say that what changed was not what needed to change. When I wrote “Sick Woman Theory,” I was writing into the totalizing climate of ableism, which, at best, renders invisible anyone who deviates from its invented norm, and, at worst, kills them outright. I was writing into the institutional practices of gaslighting, discrimination, incarceration, brutality, and eugenics. I was broiling with rage. I wanted scorched earth. When I say I wrote “into,” rather than about, I mean that I couldn’t see another way to make my case but to go deep into the shit so I could report back on its exact and specific qualities, which means I got covered in shit. I summoned a voice—zealous, galvanized, grandiose—that was not how my own sounded at the time, and I did this because I needed a voice like that, to rally, to cut a path through, to shout, “Is anyone there?” into the lonesome dark and maybe hear back a “Here we are!” I needed to bellow “Follow me!” just to give myself a direction, somewhere to go that was not where I was. But when the shit started getting into the water supply, I saw that this voice was its own cruel optimism, a promise that could never deliver. What I had conjured up was a Sick Woman that seemed empowering and righteous and who promised a community—but what I quickly learned is that no promise of community can hold, and all promises of solidarity fail. Anyone who’s worked in activism for longer than five minutes knows this. Because the promise is not enough: If there is not actual, material change that comes with it, a promise is just hot air. And worse, it’s hot air that puffs up around an individual, a heroic leader, leaving everyone else in the dust.
What I mean is: what I wanted “Sick Woman Theory” to change was the world, but it only ended up changing me.
Here’s another way I can explain it: One morning in 2019, I opened my Instagram to see that I’d been tagged in a photo by someone I didn’t know. The photo was from a tattoo account, the torso of someone, head cut off, with a large, fresh tattoo on their upper arm and shoulder. It was an illustration of a person in a frame, like a tarot card. I frowned and squinted, not seeing why I’d be tagged in this. I had to stare at it for a minute before I saw that it was an illustration of me, based on one of the portraits by Pamila Payne that accompanied the “Sick Woman Theory” text, where I’m lying in bed with my hair fanned out on the pillow like the ink cloud of a frightened octopus. The second I recognized myself tattooed on this stranger’s arm, my nose exploded with blood and wouldn’t stop for forty-five minutes.
“I wanted to write a manifesto, but I quickly learned that a manifesto is only ever a document that reaches too far, that speculates too impossibly, and that the only use a manifesto can have is to lay bare why it cannot be manifested, to open itself to all the ways its un-manifestation shapes the world and is its very foundation.”
I know I am being contradictory, and am asking for too much: I both wanted “Sick Woman Theory” to change the world and I’d prefer it not make such a fuss about its author. I wanted to articulate my experiences with chronic pain and poverty, the medical-industrial complex, the gaslighting from doctors, but I did not want to be cast in a romantic face-off with my tragic lot, my “fate worse than death.” I wanted to describe the figure of the Sick Woman so I could then explain in detail why she shouldn’t exist, but I also wanted those who would identify with her not to feel that their suffering was unseen and worthless. I wanted to write a manifesto, but I quickly learned that a manifesto is only ever a document that reaches too far, that speculates too impossibly, and that the only use a manifesto can have is to lay bare why it cannot be manifested, to open itself to all the ways its un-manifestation shapes the world and is its very foundation.
About six months into the Sick Woman storm, as my inbox swelled with invitations to speak, I started making a list of accessibility requirements that I would need if I were going to work with institutions, so they could host my disabled ass and make the event accessible for the audience. The document began as a necessity—I had to put into emails that, if I were to stay overnight for the event, I’d need to sleep in my own bed in an actual room, and not on an air mattress in an unheated hallway, because bitches tried it. I had to write that the venue hosting the disability conference had to be wheelchair accessible because bitches, so many, tried it. I had to insist that all access info—listing both the ways that the event was and was not accessible—be posted with the announcement because institutions love to say how they’ve made their event accessible, but would prefer not to include the inaccessible bits, which are, of course, the bits that the disabled community actually needs.
After personally using this document for several years, and sharing it with friends as a template upon which they could build their own, and hearing back that both disabled artists and the institutions working with them had found it useful, I published my “Disability Access Rider” on Tumblr. Within a few days, I saw some tweets go around that said, essentially, “If I used a document like this, I’d never get invited anywhere.” I lol-ed. Bitch, same! It seems that some are under the impression that I send that document and it just… works?
As soon as it was born, my Disability Access Rider became a document of failure. I learned that institutions had often never seen a document like this before, nor had they given much thought to access at all. Because of this, I decided to “grade on improvement,” rather than using my rider punitively. In response to any invitation, I send it and ask if we can have a conversation about how they can or cannot support each item; I say that I hope this document can open space for us to work on access together. Which means that it’s an itemized list of all the things I’m going to have to pour uncompensated educational labor into and, more often than not, be told that the institution cannot support them, even though the institution has far more resources and power than I do, and if they’re not using that to support access, what exactly are they doing? The reasons they cannot support them are myriad: I’ve heard everything from the more understandable (though still not great), “We don’t have a budget for that,” to the less, “But I find sign language distracting.” I’m not sure if my policy of grading on improvement has been a good idea. I did it because it was more realistic than expecting accessibility to be there already, but in reality it’s meant that I spend most of my time not on my actual work, but writing emails that explain, say, why live captioning or ASL are important to have at lectures, or an all-gender restroom is preferred, or the building needs to have a ramp and an elevator, and then getting into email fights about it. It’s meant that I enter into a relationship that is by default unequal in terms of the time and energy I must make available to an entity that is making far less available to me. It’s meant that I try very hard to see the person that I’m speaking with not only within their institutional context, but as an individual with whom I might collaborate, find convergences of interest and values with, maybe build something together with, even though this sets me up to be exploited, because the institution is never out of the context, it is always there, in fact it is the premise of our entire relationship, and it consumes without compunction the resources it requires to survive, even if those resources are me. It’s meant that I have to point out this power dynamic frequently, which is fucking tiring. It’s meant that when I point it out, I’m told I’m wrong, or there’s nothing that can be done, or more often, I just don’t receive a reply. It’s meant that, sometimes years after working in some of the most exploitative and ableist conditions of my career, the institution will include me on BCC in an email asking to give them feedback on my experience by filling out a google form; and if I agree to Skype with them about it, they’ll give me $100. It’s meant that I cannot just say, “I need an aisle seat on the flight,” but “I need an aisle seat on the flight because I use a cane.” And even if I do bring my cane into the discussion, I’ve often boarded flights and found myself booked in a middle or window seat, and when I alert the institution to this, they tell me that, at the airport, they “are sure you can advocate for yourself.” But—I want to say—I thought I already did?
Grading on improvement has meant that the costs of the institution’s “improvements” have been borne by me, for free. At best, it has meant that I’ve served as a learning experience I did not particularly want, nor was I paid, to be. Worse, I’ve been ignored, argued with, chastised for being difficult, and disinvited because of that document. And if the organizers are white women—fuck me. There will be obsequious apologies, testimonies of guilt, lots of emails about how they are so very overworked and trying so very hard, and, of course, tears. (Recently I made a rule for myself: if an invitation comes in for anything about “care” and it’s organized by only white women, it’s an automatic No. Also, recently, I read this text aloud for an event with machine-generated live captioning and the AI transcribed white women as “right women.”) It says something that any event you’ve seen me participate in since 2016 was one where the access conditions were tolerable—and nearly all of these events were inaccessible in some way. Only one had secured and budgeted for comprehensive accessibility before inviting me, and that was five years after SWT was published.
Getting into email fights about disability access is the only part of my public role as the Sick Woman that feels like it is worth anything, because it takes this condition of “being seen as” by something external and returns a small amount of agency to me in terms of what I can do with it. It’s not some chip I can cash in for my ego, but something that might make meaningful change and bring actual support to the disabled community. It is not performative—and it is often the only thing that feels that way. Institutions love to perform themselves, their “ethics,” their “values,” and the main way they do this is by shoving their fists up the asses of puppets like me. That I would be leveraged as a performative virtue signal the institution can hold up to make itself look good is the game being played and, for better or worse, I choose to play it. I try to insist on my own terms for playing it, even though I know I can’t win, but it seems better than not playing at all. In fact, I don’t think I can afford not to play. For someone like me, having institutional legitimacy is the only option to sustain a career; I cannot hope to make a living from my work without it, no matter how much I dislike and disagree with how institutions behave. In the past few years, I have watched several close friends renounce the creative industry they’ve worked in, many for their whole adult lives, quitting the field entirely, because they are so disgusted and burnt out. I call them “the renunciators,” and I empathize completely, I’m disgusted and burnt out too. But I’ve also noticed that they all have more money than I do, or they come from families with more money than mine. To be honest, at this point, when I meet a brilliant artist or writer who is intentionally not trying to get their work into the world at the biggest institutional scale possible, I can guess that somewhere they possess a privilege, a freedom to opt out, that I don’t.
So, although I have less and less patience with the rules of the game, I know that I must play it, at least for a little while longer. While I’m here and I have the energy, I can try to do what I can to be helpful for others. That I am being invited instead of other disability activists, who’ve been doing the work decades longer than me, is enraging, and the only way I can mitigate my rage is to try to leave something that might be useful for those who come in after. If I think a friend would find the invite advantageous, I ask if it’s okay that I suggest their name; I tend to decline by offering lists of others that I think should be invited instead. However, this still requires that I engage, which makes me seem available. I remember once being invited to contribute to a magazine whose issue’s theme was “on violence,” and out of twenty-five invited artists, fewer than five were not white. I pointed this out as the reason I declined (“I would implore you to ask yourself what exactly a publication featuring a masthead and table of contents dominated by whiteness could say, directly or indirectly, about violence”); some time later, the same editor invited me to a new issue, this one “on care,” and apologized if my seeing their name in my inbox would be triggering. When I declined, they wrote back to tell me that if I ever needed anyone to edit my work, they would be happy to provide this service. As I say, I have less and less patience. What I’ve learned is that trying to leave something that might be useful for those who come in after is so much easier said than done. It’s like saying that all it takes to colonize Mars is, not a team of people working around the clock on the hardest problem in the world with a billion dollars stolen through exploitative labor practices, but a white guy with a vision. In this analogy, am I Elon?
“My Access Rider is not about sharing the load so that we can suddenly be in the black: it’s about redefining what being in the red means, what being insolvent to each other does, and it’s about acknowledging that we will always be there, covered, totally, in red.”
I’ve found that, as my cultural capital increases, if I insist on certain accessibility requirements, not in the name of the audience who might need them, but for myself, I am more likely to get them. This is because riders are traditionally used by divas and rock stars, and this is an economy that institutions understand—the economy of idiosyncratic spectacle, of throwing one’s weight around, of power. A crip friend put it well: “They seem to think access is the same as wanting my name in lowercase letters.” I have adapted to this, joking with friends that access is a kind of diva solidarity, that we crips should approach it as supporting each other to be divas. But this is limited comfort. If access is seen as one individual’s “special needs” or “accommodations,” that access can then be separated from the structural inaccessibility of the world that necessitates it. It scales disability down to the quirk of a single person’s body, something to be dismissed as an inconvenience, an extravagance to be indulged. I know that most venues I’ve worked with only ever made events accessible because of me, and that the moment my rider was taken off the table, the moment I wasn’t there to make my demands, everything went back to how it had been before. I’m not sure what to do with the disappointment, the failure, of this. Is it mine to bear? I know it shouldn’t be. But then why am I the one who carries it?
One response I’ve gotten to my access rider is that the institution did not budget for accessibility, but one or a few of the organizers who care enough will personally try to make it work, putting in extra hours of their own unpaid labor. For one music festival I performed at, the person who took my rider seriously was the only woman of color on staff. She said she understood why disability access was important but said to me that it felt like I “was dumping all this extra work on her.” I nodded. “That’s exactly what this document is about,” I said. My Disability Access Rider is not a list of things we can “achieve” together if we just put our minds to it. If only! I’m not asking the staff of an institution to be more overworked, stressed out, and underpaid in working against ableism. I’m trying to point out that they already are—overworked, stressed out, and underpaid, that is—and it’s because of ableism. I’m trying to point out that the most fucked-up conditions of capitalism exist because of ableism—because ableism demands that the staff work for ableism only, making the possibility of wear, depletion, fatigue, and illness, chronic or not, impossible under the relentless conditions of capitalism—and so, we should help each other deal with this nonsense together. My rider is a way to acknowledge that structural inequality and discrimination exist, that ableism infects all ideologies of oppression, that capitalism cannot work without it—and so, we can’t fight it alone. Making events accessible takes an impossible amount of labor, money, and time; it is not something to which the word “achieved” can even be applied; and ultimately, perfect access is not accessible to us. It does not exist. In practice it’s a goddamn mess. Hiring signers for an event of two hours costs hundreds of dollars, live captioners are booked out months in advance because they’re so scarce, so many buildings have fucking stairs. The world is inaccessible, the ideology of ableism is everywhere, in everything, from urban planning to legal policy, to wealth inequality, to the super-cripple myth, to the word “lame” being used in casual conversation about things that suck. And this is why I’m asking that we bear it together.
I tried to explain to this woman that my rider is a way of taking seriously the fact that, even if we are told we have to, we cannot do this alone. Care is always a deficit, access is always insolvent—and that’s the point. This is because the body, by definition, is a thing that needs support—it needs food, rest, sleep, shelter, care. I like to truncate this definition, to make the body simply a thing that needs, period, because what else would support be—but needed? The body’s dependency is its ontology: it cannot survive alone unto itself, even if it wanted to. Yet we’ve been taught that such dependencies, such needs, are abnormal, disgraceful, an index of one’s inadequacy. Capitalism and its attendant ideologies have used powerful magic to make us believe the opposite of what is true: They have persuaded us that the most important force on earth is one’s individual will and the ability to manifest it, regardless of what that would require in terms of material resources; they have convinced us that any one person’s success is the simple result of a decision they made to thrive, and not because of the support any individual requires to do anything, on any scale, always. They have induced us to think that the failure to lead a life of wealth, ease, comfort, and privilege is because that person just couldn’t get it together, couldn’t pull themselves up by their bootstraps, wasn’t willing to put in the work. This is a mighty myth, one that is vaunted as universal, and it is the vehicle for that most romantic and nonexistent of subjects: the man who makes new worlds simply because he wants to, who shapes his destiny of his own accord. His body cuts through the void without history or politics or needs of any kind, no tether to anyone or anything else. He is not us, because he is impossible—but we all wish he was us, we all throw ourselves at his feet, try to make ourselves in his image. What is required to sustain this myth? Who hoists him up? Who is that behind him, in the background, helping him get there, defining him as what she is not—but the Sick Woman?
“I want ableism understood as the most integral component of all oppressive ideologies—capitalism, white supremacy, sexism and misogyny, homo- and transphobia, classism, imperial- and settler-colonialism—that these all feed off each other, that they need each other to work, and what they need most of all is ableism, because it’s the ideology that most sweepingly invents the false hierarchy of that which can be deemed normal, which is to say, who can be deemed not normal. ”
The reason why disability access takes so long, so many resources, so much energy and labor, and why, of course, it can never be perfect is because it foregrounds the Sick Woman and gives her center stage. It does not make her into a hero—rather it explodes the concept of the hero at all, asking not what she needs to be heroic, but what she needs just to live. The magic trick capitalism has managed to pull off is not only to make us believe that we do not need, but that we should not—and disability access is a long needle piercing the bubble of this magic trick. Without this magic, without this myth, we are left with the truth: The body is never going to be solvent; it’s always going to need too much, be too expensive, not do everything we want it to, hurt more than we can bear, and then deteriorate until it can no longer move. Disability access is about orienting time to a scale that prioritizes this truth, prioritizes what we need and whom we support, which is in direct opposition to the capitalist order of time that ignores and devalues such things. My Access Rider is not about sharing the load so that we can suddenly be in the black: it’s about redefining what being in the red means, what being insolvent to each other does, and it’s about acknowledging that we will always be there, covered, totally, in red.
And yet we’ve built our world as if this fact deviates us from where we should be. We’ve framed care within the context of debt—where my “giving” care to you means I’m depleting my own stash, and your “taking” from me means that now you owe me—and although we’ve made debt into an index of our deficiency, we’ve also made it the only possible condition of life under capitalism. To be alive in capitalism is by definition to live in debt, and yet we’ve defined debt not as a kind of radical interdependency, as the ontological mutuality of being alive together on this planet—which it is—but as all that reveals our worst, what happens when we fail, a moral flaw that ought to be temporary and expunged. By doing this, the omnipresence of our need is framed as a kind of weird bankruptcy that happens only to the weak—which is a fucking canard. The logic of capitalism states that the person who needs support from society is a burden on that society, but this logic can only work when the premise holds that our natural state is one of surplus—and it is not. Yes, it might be nice to labor without limits, survive without support, live without loss, decline, and fatigue, but that’s not how it is. If we should have learned anything from the COVID pandemic, it’s that, for better and most certainly for worse, we’re in this together.
Obviously, I’d prefer the conversation about access to be about real shit like universal health care, a living wage, and abolishing the police and prison-industrial complex, but I have to start where I am, with what is within reach, so for now, all-gender bathrooms and ramps and alt text will have to do. But what I’m trying to smuggle in with my gentle but determined requests is the more revolutionary proposal of total institutional change, a restructuring on a systemic level of our values and the resources we allot to them, the power imbalance scrutinized and remade. I want accessibility to be seen as the political movement it is, advocating for the rights of a group that hardly has any and needs them the most. I want ableism understood as the most integral component of all oppressive ideologies—capitalism, white supremacy, sexism and misogyny, homo- and transphobia, classism, imperial- and settler-colonialism—that these all feed off each other, that they need each other to work, and what they need most of all is ableism, because it’s the ideology that most sweepingly invents the false hierarchy of that which can be deemed normal, which is to say, who can be deemed not normal. I don’t want accessibility because the disabled community “deserves” it, because we’ve proven ourselves “worthy,” allowed into the category of the good and legitimate human by those who decide and define it. I don’t want accessibility because someone is being “generous” in giving it to me, nor do I want the labor I have committed to accessibility to be framed in terms of my own generosity, that I’m insisting we have a bench to sit on in the museum out of the goodness of my heart. I’m not talking about trying to feel good, I’m talking about trying to survive.
I know that, to some, I probably sound bitter and cranky, but what else should I be? Fucking grateful for the opportunity? Focusing on the silver lining? Appreciative of all that I’ve learned from the pain of the struggle? Should I be watching my tone?
“I don’t want accessibility because the disabled community “deserves” it, because we’ve proven ourselves “worthy,” allowed into the category of the good and legitimate human by those who decide and define it. I don’t want accessibility because someone is being “generous” in giving it to me, nor do I want the labor I have committed to accessibility to be framed in terms of my own generosity, that I’m insisting we have a bench to sit on in the museum out of the goodness of my heart. I’m not talking about trying to feel good, I’m talking about trying to survive.”
Hands down, the best thing that happened to me because of “Sick Woman Theory” was that other crips read it and came and got me. When I’d shouted, “Is anyone there?” into that lonesome dark, they replied, “Yes, bitch, and we’re waiting for you!” Because of that text, I am now part of an actual crip fam, friends who have my back as I have theirs, friends who get it, who are just as tired as I am, who know that, yes, we are fighting for our very lives, and it’s going to take all we have, so let’s make a plan for the long haul, build something to carry the heaviest weight, and find a way. For we will find it. We’re not going anywhere. If the future is anything, it’s disabled—and that is true for everyone.
If you don’t believe me, just wait.
In November 2021, I read a draft of this text at my first IRL reading in more than two years. It was to a sold-out, socially distanced crowd in the atrium of the Gropius Bau in Berlin. Reading something in public and not to a Zoom screen, where I’d done the book tour for Minerva during the pandemic, was weird. I got my hair done. I wore a Britney mic. The chair I was sitting in dipped low, so it was hard to get breath. When I got to that last paragraph about finding my crip fam because of “Sick Woman Theory,” my voice caught. I felt tears start to come. My mouth was dry. I apologized to the crowd. I tried to explain that I was crying because, when I think of what my life was like before I found my people—and even that sentence I couldn’t get out.
A crip comrade and friend was in the crowd, and we spoke for a long time afterward, while the atrium emptied around us and all the chairs were put away. We were the only ones left in the huge room of the museum. They had their cane leaning against them. They had a question for me, which they hadn’t asked during the Q&A, because they said it was just for us. With their voice measured and slow, as if they were asking themselves too, they said, “If you didn’t have to do all this work about access, all this labor, send all these emails, get into all these fights, what would you do? Like, if you were just—welcomed. Supported. What would you make? What is your actual work?” I cried again. The word “you” in their question could have been the word “we” and the meaning wouldn’t change.
Some might assume that the great tragedy of my life is my illness. But in my opinion, the far greater tragedy is that I can, for whatever reason, write about it pretty well. I once went to an astrologer who pointed a long finger at my chart and said, “Your illness is more dignified than your life.” “I fucking knew it,” I said. In astrology, the word “dignified” means that a planet is supported to do what it wants to do, but the connotations of an elegant seriousness also apply. I can see my illness, out in front, distinguished, noble, and me and my little life behind it. That external condition that erases the internal one. That conundrum of how I am seen eclipsing what I know myself to be. I can see my other works, my other passions, reduced to hobbies—or worse, things I do to “cope.” I can see my craft bent in service to this one subject—that I am not seen as a writer whose subject is, sometimes, illness; but that I am seen as a sick person who is always writing about their sickness, even when they’re not. I can see my work flattened by ableism and the machinations of capitalism, letting me “self-actualize” only if the story conforms to the legible narrative of what I overcame, the battles I fought, how hard it is for me, and all that I accomplished despite my wretched condition. I don’t know if I—my body, my self, my life, my work—can ever be as dignified as my illness. I see that I will never fit into that mythical universal subject of the man who shapes his own destiny unburdened by anything but his own will. The other side of that truth is that I don’t think the world will ever let me be something other than the Sick Woman.
What I do know is that my illness is part of who I am, as are my wit, my ambition, my diva-ness, my penchant for kink, my love of perfume and leather, my preference that every meal I eat be delicious, my tendency to collect guitar pedals and complicated words, my love of movies and freaks and fine whiskey, but I also know that I didn’t choose to be ill, and that I chose and chose and keep choosing many other things to be true about me, to be included in my life, and this distinction feels important. I want a life capacious enough to contain what I choose to be true about myself and that which I did not but have nevertheless learned to work with, to use, to wield. I know that there is a place in me where things from the outside meet the things from the inside and that, even if this place won’t stop moving with pain, my body has enough room to carry both. I know that I prefer to fight and bite rather than acquiesce and let go. I know I never roll over unless I’m being told to by a good service-top and the sheets beneath me are three hundred thread count. I know that my rage heats and leads me and that I have never gotten over anything. I know that care is not a virtue signal, accessibility is not performative, and my disability cannot be mined as an abstract concept. I know that my body cannot be separated from my work. I know that I will survive, even though I’m not supposed to. I know that I know how to live, and will.
Once Scorpio season hits, I feel the year start to unravel, and in 2021 it hit harder than usual. The vibe goes darkly ruminative into how I spent my time: I tally up the books I’ve read, the films I’ve watched, the projects I saw into the world, and I look through the writing I’ve done and take stock of the drafts, seeing if I’ve produced enough to start assembling a book. In 2021, my writing folder was slim, about ten pieces, and only two or three seen to completion. My shoulders dropped at the small output. I felt drained, like I’d been running a very long race, but with so little to show for it, and there’s no finish line in sight. Instead, I spent the majority of my time in 2021 getting into email fights with institutions about disability access (which are reprinted below—as corroboration, evidence, documentation, or just to show that, despite its feeling like the opposite, I did manage to make some little marks on a wall). And then the year went out with a bang. On the occasion in early December 2021 of the last South Node Eclipse in Sagittarius for the next eighteen years (which was conjunct my ascendant, Uranus, and natal South Node), I resigned from my day job, where I worked for nearly eight years, because the board didn’t want to give the staff a living wage and healthcare, despite the fact that the organization just received ten million dollars from NFT sales. It was a nonprofit with a tiny budget—the most I ever made in that job was $19,000 a year; I’d had only one raise the entire time I worked there. When the windfall came in, I devised a plan where we could pay off the staff’s student debt, give everyone a raise and healthcare, and give twenty $20,000 awards to the community every year for five years, and still afford to put several million in the stock market—and the Board said no. They all had tenure. One of them left a twelve-minute voicemail on my phone where they cried and told me I’d hurt their feelings. I replied, “My problem is that I’m poor, not that I have hurt feelings. This is the opposite of your problem, so please try to think about how to close that distance.” I wrote a zealous, galvanized, and grandiose letter of resignation, and cc-ed all the staff, attaching it so everyone could see my emails with the Board. In them, I fight and fight and fight for basic survival, and they say no. Nothing changed. The nonprofit still held its annual fundraiser, asking its community for $20 donations, without mentioning that they were going to put $10 million of NFT money into the stock market. They still have the words “diversity,” “community,” “solidarity,” and “equal access” in their mission statement. Well, no, something did change—I am now out of a job.
I know how this fight goes. I know that this fight is about the negotiation between complacencies and fury, about what one can and cannot afford to lose. I know that I am fighting for my life, my worth, and the fact that I am dimensional—and my opponent is the institutionality that insists on flattening me. I know that this opponent is fucked-up and much bigger than me and sure as shit fights dirty and which, of course, will win. But I am good at this fight by now. And even though I lose, I do not surrender.
At the close of 2021, sitting on the side of the ring with my head in my hands, blood pouring from all the holes in my head, I joked with a friend that I’d spent the year getting into email fights and losing. They wrote back, “Oh no, you’re winning, haha—but maybe there’s no prize.”
Special thank you to the conversations I’ve been lucky to be in with: Ken Baumann, Uma Breakdown, Johannes Beck, Joey Cannizzaro, Leah Clements, AM Kanngieser, Jessika Khazrik, Carolyn Lazard, Emiliano Lemus, Jordan Lord, Chandler McWilliams, Lara Mimosa Montes, Hana Noorali, iele paloumpis, Perel, P. Staff, Lynton Talbot, Christopher Weickenmeier, and Constantina Zavitsanos.
At the end of 2021, I realized that I’d spent most of my writing time over the course of the year getting into email fights with art institutions about disability access. It felt like dropping pennies into a hole. For an entire year. What did I get in return? How to measure labor that takes everything yet rewards barely anything?
I wish I’d written things other than angry emails in 2021, but if this is all I got, I might as well try to make it useful. Use what you have, they say. I don’t publish these as a gesture of punishment against the recipients or to display my own prowess at email-fighting; by my own measure, I lost these fights. I feel pretty fucking beat up. My hope is that they might be lodestars for people who need to write emails of their own, to give courage to those who want to write the email but don’t. At least they demonstrate, to myself most of all, what it means to try to practice an ethic, something that gets harder and harder and so I need more and more to remind myself how to do it and why.
Someone asked me recently why I’m a writer. I had to think a long time before I had an answer. “Because I can fight my enemies there,” I said. “You have a lot of enemies?” she asked. “Yes,” I said, feeling my blood get hot, “and they all deserve to meet me.”
—Johanna Hedva, February 2022, Berlin
Sent Feb 5, 2021, 2:43 PM
Subject line: Publication’s contribution
for the future, i’d appreciate knowing what exhibition materials are expected of me, and the dates for their delivery, with a more reasonable 6-8 weeks lead time, rather than days. i’ve got many large-scale projects in production at the moment, and i am also disabled, so i have to budget my time and resources carefully. it’s just not possible for me to turn things around on such short notice, even if i want to. i bring this up because this is now the second major component of this exhibition—the first were the discussion sessions scheduled with less than a month’s notice, the second is this publication—that i have been surprised by. had i been given more time, i would have loved to participate and contribute.
thanks and all best,
Sent Feb 5, 2021, 3:25 PM
Replying to the thread of Publication’s contribution
thanks for the reply. yes i did receive that first email—but what i mean is that a deadline of three weeks for a six-page contribution to the exhibition catalog is just not enough time for me. the email was sent dec 23, right before the holiday break, and the deadline was january 15. i apologize, but with the amount of commitments i have, as well as my health, that’s just not a reasonable timeline.
is there anything else that the exhibition requires that you can let me know of now? bios, press and social media materials, publications, etc? if i know about them sooner rather than later, i can contribute. but for substantial contributions, like a new text, i usually need 6-8 weeks advance time, rather than 3.
Sent Apr 28, 2021, 12:19 PM
Subject line: re Invitation to participate in Artists Talk
re the transcript: this is something i really must insist on, because if we have audio only, we’ll exclude the deaf and hard-of-hearing community, as well as others for whom audio is not accessible (another example is people who can’t play the audio for various reasons; for instance, a parent with young sleeping children who needs to read the text, rather than play the audio which might wake others up; or a neurodivergent person who cannot follow spoken language as well as reading it). it makes a huge difference in terms of who will have access to the material. without this, i don’t feel good about agreeing to this interview because it would exclude many.
for transcription services, i use rev.com which is $1.25/minute, and i would offer to pay a portion of the costs for this, if you’d be willing to split it between us.
i would also gently suggest that, in the future, you consider including this in your budget for other interviews.
Sent Thu, Sep 2, 6:05 PM
Subject line: withdrawing from the show
dear l— and m—,
i’m very sorry to have to write this, but after receiving m—’s email on tuesday, i must request that my work be removed from the show and returned to me immediately.
i want you both to know that i very much appreciated the time and care you offered j— and me in the aftermath of the opening. i felt that we had resolved the problems, and i was satisfied.
but getting m—’s email on tuesday was a shock. i can only assume that she’s lashing out with rudeness, defensiveness, and passive aggression because she feels stressed, and i do hope she will be okay. i also understand this was a large show with many components, but this information does not need to be weaponized against me or those who work for me, as m— did in her mail. even if the show had 100 artists, i still should not have been treated the way i have been.
i know we are all tired of this, so i don’t want to take up too much of your time. but i do feel an obligation to explain, from my end, why pulling the work feels like the only option at this point. i’ll try to be brief.
i think you need to know how depleted i am by this m— debacle, and that working with her and this exhibition has been the worst experience of my career. for an abled person, such stress might just be an inconvenience, but for me, it has had significant health consequences. triggered by the stress of this show, i experienced my first mental-health crisis in five years—which required emergency doctor visits, medication adjustment, enacting of my crisis network, etc—and a total flare of my physical illnesses from which i am still recovering. i’ve lost significant amounts of time, health, and money because of it.
as one of the only artists of color in the show, and one without a gallery or a studio team, having to advocate for my requests, and fight for support, and ask repeatedly to be listened to only to be dismissed by a group of white abled cis women with institutional power, has felt demeaning, to say the least, and ableist, at worst. to have my three-day installation time cut down at the last minute to an afternoon added undue stress, to have my work installed wrong and then to have my calls and emails ignored asking for it to be fixed in the days before the opening stung, to have an ableist text written about my work without my approval was outrageous, and now to have my requests to resolve the remaining issues be called unreasonable, and to be on the receiving end of barely concealed vitriol, is too much.
this show is ostensibly organized around illness and care, and yet it is the most careless and ableist i have ever been treated at the hands of an institution. one of the reasons i feel i must pull the work is that i have a duty to warn the disabled artists in my community about this experience. that i lent you my name, cultural capital, and visibility as a prominent disability activist is an endorsement of your institution, and i cannot bear that this should stand after being so mistreated by the curators’ and institution’s disrespectful, exploitative, and ableist practices. you should know i have started to spread the word in my community, and i am considering being public about withdrawing and why. i don’t do this punitively and have no interest in any kind of “call-out” or “canceling”—it’s that i am concerned that further harm might come to my community if i don’t take a stand.
the main thing remaining were the photographs of the installation. since this is a new body of work that i was commissioned to make especially for this exhibition, it’s important to me to have good documentation of it installed on site at the commissioning organization. this is also an accessibility issue: i do not have a studio, because i cannot afford one, and so i wanted photographs of the installation while it’s up. it’s not possible for me to rent a studio, hire someone to install the work, and hire a photographer to document it (which is what m— suggested i do), when it’s currently installed and you were having a photographer come anyway. i understand that hiring a photographer is expensive, and i appreciate that you paid extra for them to return to photograph my work (a point that m— emphasized, again weaponizing information about the labor behind the show against me. this move makes the work of an institution into an individual problem, one of m—’s inconvenience, that is then passed on as a burden for me to carry; it also produces an expectation that i should feel gratitude for the institution doing anything for me, even the bare minimum of taking photos of work that the institution specifically commissioned from me).
but if the photographer’s time was so limited and expensive, why not ask me which shots were the most important to take, instead of not consulting me at all? it’s fine, as our last email stated, not to have a photograph of every single drawing; but there are several key elements of the piece that have still not been professionally photographed (a closeup of the wall of drawings over the table, the table with the books with the sound work, a closeup of the corner, and the piece on the floor), and i requested that they could be. this didn’t have to be much, maybe five or six shots, and i would have gladly clarified this, had anyone asked.
m— also seems to be upset that we asked for some remaining information to be added to the spreadsheet that lists all the work (we needed the dimensions of the drawing that i made on-site, and the catalog and insurance value of the books). she says this information was sent—but we did not receive it, which is why we asked for it again. she is upset that we are asking her to add this information to the spreadsheet at all, but again, this is an accessibility issue: in order to manage my work, without a gallery or a team, i have to be as vigilant as possible about keeping the details all in one document, especially for a body of work that contained more than 100 elements. because these two last bits of information had to come from your end, we requested that you could add them, so as to keep them all in one place. if she didn’t yet have permission to edit the spreadsheet, a simple note to alert us to our oversight would have sufficed.
in her email, m— essentially said, multiple times, that i was being unreasonable with my requests. but i must ask: if you cannot understand why i would be requesting something, why not ask me to clarify its purpose? or ask if there’s a compromise? j— and i have made ourselves available for discussion over and over again, only to be consistently not consulted about anything.
all of this begs the question: if this kind of engagement was not something the staff had time to do, then why insist on such an ambitious show that would certainly put strain and stress on everyone?
asking chronically ill and disabled artists to be vulnerable and public about their lived experiences in their work, for a show that specifically requests this of them, is a big ask—you must know that extra care will be required, in addition to basic accessibility. by now i’m used to being the only person in the room insisting on access in a show about care, but i was hoping, given the intentions and themes of this one, that it wouldn’t be the case. and yet it was.
after the opening, you wrote that this was a big learning experience for you all—but can you see how exploitative that feels to someone like me? i did not sign up to be your learning experience. i did not agree to make new, vulnerable work for your prompt, only so that you might learn from your mistakes about how not to replicate ableist and inaccessible power inequalities upon a disabled artist.
l—, i know you, and we’ve worked together before, and i’ve always felt supported and cared for by you. i said yes to this show because of our history together, and i trusted that the process would be pleasant, as it has before. but this experience has done great damage to my health and my work, and i cannot let my work stay up in your gallery, for a show about care, when i’ve experienced nothing but the gross opposite. it would be signaling to the public, and to my community, that working with you as a disabled artist was an experience that i’d recommend to other disabled artists, and this couldn’t be further from the truth.
Sent Thu Sep 21, 1:20 PM
Replying to the thread of “withdrawing from the show”
hi l— and m—,
i appreciate that you feel the need to offer something towards a reconciliation but, ultimately, what you’ve proposed does not feel like enough, and strikes me as continuing the performative and extractive way that “care” has been enacted throughout this process. the things you’re now suggesting to do to reconcile are the same things that i asked for back in june. when j— spoke to you on the phone in the aftermath of the opening, he said that if the remaining issues to be done were not resolved within a week, i would pull the work. that you are offering them now, after months of stress and a process that’s gone from bad to worse, is cold comfort.
your offer to “take my comments seriously and reflect” again feels like i’ve served as a learning experience which i did not consent to be. you’ve extracted an enormous amount of educational labor from me behind the scenes, all while exploiting my work, name, and cultural capital to a public who has no idea what’s gone on under your roof. as i said before, pulling the work is the only way i can indicate to the public and my community that this relationship was the opposite of what the institution says it is.
you commissioned me because i stand for something, and what i stand for has not changed: care is not a virtue signal. accessibility is not performative. my disability cannot be mined as an abstract concept. my body cannot be separated from my work.
i have already edited my instagram posts to state that i’ve withdrawn the work because of the ableist practices of the curators and institution. the right thing to do on your part would be to publicly acknowledge my withdrawal, and the reasons behind it, as well.
and if you have an extra 1,000EUR lying around, i would suggest you use it to hire a disability access consultant.
take care, jh
Sent Sep 13, 2021, 12:38 PM
Subject line: Edit
i do not approve of the changes you’ve made to my text in the name of “accessible language.” i’ve noticed that this has become a trend among european institutions in the last few years—an effort to “un-complicate” the language and concepts that are used in order to be more “accessible.” but the foundation upon which this impulse rests, and the assumptions that are made from it about the intended audience, are deeply problematic, and i would implore you to interrogate exactly what you are assuming about your audience with such actions. to my mind, and that of many disability activists i know, such actions assume a kind of hierarchy of intelligence or literacy, that a “generalized” audience is somehow unable to understand a certain kind of complex language or set of theoretical concepts. what exactly is the difference between this approach and something that could be said to be a “dumbing down”? if we take a closer look, the assumption here is that someone who is unfamiliar with certain words or concepts also does not have the capacity to google their definitions, or to understand the definition when they read it. this is not about access, then, but something more sinister, something which continues the logic embedded in ableist practices that made categories like “imbecile” acceptable ways to discriminate, pathologize, and incarcerate.
this is something i feel strongly about from within disability justice and activism, and i am concerned that this is happening in a show about “care, repair, and healing.” i hope you can see why i disagree with the premise that “big words” or academic concepts are inaccessible. i feel it’s important to push back against this position, as to my mind it comes from a complete misunderstanding of what exactly accessibility is within the disabled community. the impulse not to use language that is complex comes from a conflation of accessibility with infantilization, the very thing i name in my text. big words or academic concepts are not what’s inaccessible to audiences—what’s inaccessible is access to university, access to academic papers (which are often kept behind a paywall of academic journals), not having transcripts of audio lectures, or wheelchair accessible venues for events, or live captioning of online talks, etc.
no disability activist that i know of or have worked with would think it’s okay to “dumb down” language for “access” reasons—and if the argument goes that it’s for some different kind of access, then i’d push back against this divorcing of accessibility from the disability justice framework that produced it. can you imagine telling a disabled audience member that we’ve “simplified” the language so that they can understand it?
perhaps why i feel so strongly about this is because i’ve been on the receiving end of such impulses, and it feels like being talked down to, diminished as an autonomous and intelligent person, which it is. i’ve had people with the best intentions speak to me as if i were a child in the name of “access,” and it’s infuriating. and it does not help further disability justice in any way, but sets it back significantly.
further, please note that in the future, if you need something from me—from an approval of major changes you have made to my text, to a bio—i must insist that you give me two weeks lead time. getting an email requesting such items at 6pm on a friday night, with a deadline for the following monday morning, is not going to be possible for me going forward. this is for access reasons. because of my disability, i have to time-manage my work schedule very carefully.
so, i request that you use the text in the original form i sent you; i do not give my approval to use the revised text. for a bio with publications, you can use the below.
Sent October 14, 2021, 4:01 PM
Subject line: ableism in the [redacted] residency
dear d— and t—,
i’m writing because it’s been brought to my attention that your institution’s practices while working with the residents were not supportive of their accessibility requirements and, worse, enacted the very ableist bullshit that the residency claimed to be critical against. this dismays me, to say the least, not only because one of the core components of the call was disability access, but as the juror of this call, i lent you my cultural capital and endorsement as a prominent disability activist. this endorsement signaled to disabled artists that working with your institution would be a safe thing to do—which has turned out not to be true. that you’ve used my name to legitimate yourselves to a specific community, and that you’ve then brought harm to that community, is something i will not allow to pass without consequence.
disability access is a practice, not a virtue signal for press releases or funding applications. from what i’ve been told, you demanded last-minute work, decisions, and/or planning from the residents—which went against their accessibility riders and capacities. i experienced this very thing during the process of getting the call ready to go online with you, which begs the question of why the institution’s practices require stressed and rushed labor from its staff that is then passed off to be borne by its residents—isn’t this sort of overwork and capitalist exploitation of labor the very thing disability access pushes back against? and if you were not interested in meaningfully engaging with the material, political, and ethical methodologies of crip time and disability access, then why make this call at all—unless it was a trend with which you wanted to align your name and brand? i have to ask if this residency was anything other than an opportunity for your institution to cash in on a topical buzzword, divorcing it from its material, lived conditions, while exploiting the labor and cultural capital of disabled artists, myself included.
the ableism in your practices and the lack of accountability around them, alas, continued: you cut residents out of events completely when they could not work in your inaccessible conditions, yet you communicated this to the group as the residents’ own fault. and this went unacknowledged as bad planning and communication on your end when it was called out.
worst of all, you used and shared the medical information of a resident—without their consent—for the purposes of your own funding application. this is a gross misstep, one that is not just inconsiderate but unethical.
you should know that i have started to spread the word in my community that working with [redacted] is not something i’d recommend for the above reasons, and that i plan to be public about this in some form in the future. i don’t do this punitively or for any kind of “canceling.” rather, it’s that i don’t want to be seen publicly aligning with an institution whose values and practices are the opposite of what i stand for.
most importantly, i feel the need to be public because i have a duty to warn my disabled community not to work with you. ableism is structural violence that impacts the disabled community in deep, longstanding, and irrevocable ways.
i would like to know how you will work toward accountability for the above actions.
Sent Sep 14, 1:06 PM
[responding to a text written about my work for a group exhibition]
3) please delete the word “tragic” from the phrase “hedva’s tragic experience.” part of my project is to move away from describing periods of illness in terms of tragedy.
Sent Oct 18, 1:16 PM
Subject line: draft text for About the artwork
i’ve had a minute to sit with your text and i have to be honest and express my dismay that throughout it you’ve framed my work and practice within, by, and for illness, as if everything i’ve made was produced because of and as a way to live with illness. this is inaccurate, misleading, and, i think, depreciates me as someone who approaches their craft with discipline, curiosity, and skill. i don’t quite understand why you’ve chosen to amplify my illness in this way, narrativizing it as the primary engine and reason for everything i do, because, in my mind, and based on our conversations over the last two years, illness and disability rarely came up as being pertinent to your goals with the exhibition’s themes or in your interest in my work. i remember us talking about a range of topics like the history of cosmology, barad’s agential realism, bands we like, the problem with manifestos, spacetime, design, typography, reading, and the architectural uncanny. so i was surprised and confused to read your text that touched on none of those things, and instead works to mythologize my illness as a kind of mystical catalyst that has me “generously” writing audio descriptions “in the face of oblivion.” as with any identity, it is, yes, a huge part of me, but it is also slippery and unstable, and not something i like to rely on to organize or consolidate myself to myself or to the world. one of the reasons i dislike using illness as a way to explain my work is that it can quickly become a romanticizing fantasy that reproduces the figure of the mad savant genius, in a haze of pain fog, scribbling on the walls to cope. as i exist in your text now, i sound like such a trope.
the other reason i don’t explain my work as a product of my illness is that it’s not entirely true. for instance, it’s not correct that illness had anything to do with my hiatus from music in my 20s. that period was motivated by a curiosity to learn other forms, because i’d spent the previous decade doing nothing but music. i think i told you the story that i woke up one day in my early 20s and just didn’t feel like playing the guitar, and i kept waking up and not feeling like that for ten years, so i didn’t. instead, i started making performance art, writing every day, i learned to code, i went to art school. to say that my break from music was because my illness “leveled” me and that the album was how i “found my way back to a wider world” is just straight-up false. i stopped playing music when i was 22, and my becoming disabled ultimately happened when i was 29. they have nothing to do with each other.
and while it’s true that becoming disabled has instigated a call to activism that i didn’t have in the same way before, my commitment to accessibility has much more to do with being part of the disability justice community, and being taught by those elders and mentors, than does my own individual experience with illness. at the risk of problematizing my own activism, i know i’ve spoken with you about my interest in accessibility as aesthetic, in that it offers the audience multiple entry-points to a work, as well as new layers of material and aesthetic meaning. for example, writing audio descriptions of my own album did not come from my “empathy of one who understands illness and debility from the inside,” but from my interest in the conundrum of how hard it is to write about music, a task i’ve set before myself in several projects, mostly in my essays on music for my book in progress, the mess.
i know that sick woman theory is the entry point for many into my practice, but it is something i feel rather burdened by constantly being identified with, and i know i’ve talked to you about that. i was particularly excited about being in your exhibition because it seemed to finally see and take seriously my work through another lens. the main argument of sick woman theory is that, whether i would want to be or not, because of my disability i am seen as a “sick woman”—that society constructs such an identity around anyone defined by care. my text is critical of this, suggesting that the “sick woman” is a cruel optimism in its own right. professionally and personally, i am constantly disappointed by the tendency of people to prioritize the “sick womanness” of me over the parts of my work and practice which are, in my mind, much more generative and interesting, and crucially, the ones by which i would choose to be defined. i choose to be an artist; a writer of novels, essays, plays, poetry; a guitarist, singer, songwriter, performer; a thinker and reader; a graphic designer; a student of astronomy, physics, mathematics, film, and philosophy; a supporter of open-source software; a scholar; and an activist. i did not choose to be ill—yet, as i pointed out in sick woman theory, all society seems to want to see and value about me is this one thing. i’m frustrated and saddened that you would do this too.