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John Lee Clark

A Standing Apart

I propose to call it distantism. The English word "distance" comes from "distantia," Latin for "a standing apart." A point could be made that distantism refers to the privileging of the distance senses of hearing and vision. The ways in which many cultures have evolved on the almost exclusive basis of these two senses have indeed been harmful to us. That insistence on sight or hearing to function in society means only one thing for us: death.

But that would be putting it too simplistically. Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. So I would like to dwell on the concept of distantia, or a standing apart, which lies at the heart of distantism. We already have a Protactile word that describes people who pull away from touch, who refuse to connect. It is an attitude and a behavior. Many hearing and sighted societies prize it highly, and their members seek to maintain physical distance, however thin those margins may be. Their rulers and heroes stand alone--the more remote they are, the more highly esteemed they are. Even when the less privileged are squeezed closer together due to poverty, exploitation, or as punishment, distantism manifests itself in the long lines, tight cells or dubicles, and above all, their being removed out of sight and hearing. For all the hype around its ability to connect the world, technology has often served to isolate people in every other way.

Are sighted and hearing people wrong to use their distance senses and let it affect how they live? No. If they wish to be all eyeballs and flapping ears, they are welcome to such an existence. There's nothing wrong with being organized or efficient. But we have problems when they impose their distantism on us.

Intervenors

Despite the many barriers we encounter in society, we can gain much awareness about the world around us. But when we go exploring or when we just exist, sighted and hearing people rush in to intervene. Can they help us? Please don't touch. They will be happy to describe it to us. They will guide us. No, they will get it for us. It's much easier that way. Hello! My name is Katie and I'm your Intervenor!

One of the things I have pondered is why, very early in the history of education of DeafBlind children, they started assigning each one of us a special teacher-companion. This wasn't always the case. There were some classes where we shared a common teacher and we had each other. We can see in the record how distantism set in, and how hearing and sighted people wanted things to look right. It didn't look good when we went around "groping in the dark." It didn't look good for us to cluster together and have too much fun. Education meant we had to sit behind a desk.

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leah lakshmi piepzna-samarasinha

CRIPPING THE APOCALYPSE�SOME OF MY WILD DISABILITY JUSTICE DREAMS EVERYONE LOVES DISABILITY JUSTICE; NO ONE WANTS TO DO IT

Sick and disabled and neurodivergent folks aren’t supposed to dream, especially if we are queer and Black or brown—we’re just supposed to be grateful the “normals” let us live. But I am the product of some wild disabled Black and brown queer revolutionary dreaming, and I am dedicated to dreaming more sick and disabled queer brown femme dreams in 2018.

It’s been thirteen years since the original Disability Justice Collective—made up of activists Patty Berne, Leroy Moore, Mia Mingus, Sebastian Margaret, and Eli Clare, a group of disabled people holding a variety of Black, Asian, white, queer, and trans identities—came together to coin the term “disability justice” and lay the groundwork for a movement-building framework of intersectional, revolutionary disability politics.

And right now, we’re at an interesting moment in the history of disability justice. It’s one where white disabled people who are the reason we invented disability justice because they’ve ignored or actively excluded disabled Black and brown people for decades are saying, “Hey, that’s a fun term” and slapping “disability justice” on their all-white crip conference or panel. It’s also a moment in which, as Sins Invalid cofounder Patty Berne said in 2015, “In recent years, on websites and new media locales, on flyers and in informal conversations, I’ve witnessed people add the word ‘justice’ onto virtually everything disability related—from disability rights based services and access audits to disability scholarship—while doing nothing to shift either process or end goal, thinking that the word change alone brings that work into alignment with disability justice.”38

I agree. I’ve noticed tons of abled activists will happily add “ableism” to the list of stuff they’re against (you know, like that big sign in front of the club in my town that says “No racism, sexism, homophobia, transphobia, ableism”) or throw around the word “disability justice” in the list of “justices” in their manifesto. But then nothing else changes: all their organizing is still run the exact same inaccessible way, with the ten-mile-long marches, workshops that urge people to “get out of your seats and move!” and lack of inclusion of any disabled issues or organizing strategies. And of course none of them think they’re ableist. Kicking cripples down the street? They’d never do that! They’re just totally clueless about what disability justice is or, indeed, what disability is, and that it’s not bad. They still silently believe that they’d rather die than be us, think of disabled, sick, or crazy people as “flaky” or “inspirational” but also pathetic and gross, don’t know any disabled history, and are still running shit the exact same way that makes or forces most of us to stay home.

Many abled Black and brown activists I know remain ignorant of the fact that sick and disabled Black and brown people are doing critical organizing and cultural work on issues from protesting the police murders of Black and brown disabled people to not being killed off by eugenics, killer cops, and medical neglect, from fighting the end of the Affordable Care Act, Medicaid, and the Americans with Disabilities Act to claiming the right to exist as we are.

38 Patty Berne, “Disability Justice: A Working Draft,” Sins Invalid, June 10, 2015, http://sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne, accessed June 18, 2018.

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Image Description: 6 frames of a graphite comic drawn on pale yellow paper are presented in a grid format. A crudely rendered tonal figure sits in front of a wide hospital window looking out at moon that is slowly appearing. The person is drawn from behind and an IV hangs beside them. The IV is adjusted by a medical staff person in the 3rd of the 6 frames. The final frame is a close up of the figured silhouette and reflection in the window, playing with positive and negative contrasting space. It reads “five summers left…”

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Johanna Hedvah

Letter to a Young Doctor : Triple Canopy

_{One of the problems with healing in this fucked-up world is that it’s presumed that you, the doctor, have a set of knowledges that the patient doesn’t, so for the patient to get better, to be cured, or to heal, they must submit themselves to Doctor’s Orders. In other words, I’m supposed to wholly, absolutely give my trust to you—but not because you’ve demonstrated any action that would earn my trust, specifically, or because we’ve gone through the stages of intimacy and equal exchange together. It’s that you represent a discipline that is supposed to be deserving of trust; I’m supposed to trust you simply because you are a doctor.}

_{�To us patients, this dynamic feels like one in which we are helpless because it is. It feels one-sided, dangerously unequal. I have to give my trust to you, but not because you’ve earned it. It’s because you work in the hospital, or the clinic, a place that is a metonym for medical expertise; it’s because you speak in the coded language of medicine and wear the white lab coat, a rehearsed performance with its attendant costume. I don’t feel like you trust me, because you are treating me, or parts of me, as enemies to be vanquished. I’m told things like: “We’ve got to get these symptoms under control},_{” “We’ve got to beat this thing}._{” It’s framed as an exercise of domination, an attempt at mastery. But the body and the mind are not places for domination and mastery.}

_{It gives me the impression that medicine is like a war room, full of doctors moving little pieces around on a table, and we patients are locked out and waiting for the blast. The presumption that you can make for us a world that doesn’t integrate us into its design is a world in which we will never feel or be integrated—and so, what use is this vision of wholeness if it can exist as whole, wholly without us? What kind of integration is it when it is made of only one part?}

_{What if, instead, the presumption went both ways—that the patient was}_also_{a specialist, like you, in possession of a set of knowledges, a vision of a world we’d like to build, that is different from this one, and so by collaborating as equals, utilizing each person’s skills, we might together build a world that contains multiple parts, a world that is not only one part—your part?}

⚕

_{I noticed that, when discussing my treatment, he’d state it like this: “What is important for me is that you are stabilized, “What is important for me is that you don’t have too many adverse side effects}._{” Always}, _{what was important for him. I wondered if he learned this technique in medical school—are you, Erica, being taught to talk to your patients this way too? He rarely asked me questions, other than the perfunctory, “And how are we today?” The vague, elusive, imagined “we” of that sentence always felt like a large void that yawned open between us. Nonetheless I tried to insert myself into the conversation. “But how much will it cost?” “But I don’t want to do that}._{” It was a struggle of making myself not only have a presence, of making myself be seen and heard and understood, but of persuading him that mine was an important presence, one that mattered, one that he had to consider as much as I had to consider his.}

_{A note I wrote down in the hospital: “What am I doing here? Malingering, lingering}._{” Being chronically ill often feels like all I really have, which is to say all that I own, is radically temporary—a lump of painful, decaying, remembering matter whose existence is composed of different strategies for lingering}.

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Degrees of My Deaf Rage in the Art World is a charcoal and oil pastel drawing on paper, measuring about 50 by 50 inches. The square composition features six angular pie charts, arranged in two horizontal rows of three. Each chart is labeled with varying degrees of frustration and is accompanied by a short phrase describing a scenario that instills “Deaf rage” in the artist. Kim's use of infographics and punny phrases presents a pointed critique of the ableism she has experienced in the art world. Each line is hand-drawn in smudged black lines, with the size of each pie chart slice representing the intensity of the rage.

In the top row, on the left side is a sharp angle. Beneath the bottom line of the angle, Kim has written the phrase “ACUTE RAGE”. Just above the top line of the angle, small words run on a slant reading: “GUGGENHEIM ACCESSIBILITY MANAGER”. Moving right, towards the center of the page, the artist has written the phrase “LEGIT RAGE (RIGHT)”. Just above it is a right angled slice of pie chart, which contains the words “BARD MFA” inside it. The drawing farthest to the right in the top row is a wide angle, like the shape of a fan, with the phrase “OBTUSE RAGE” written below it. Near this angle is the phrase “VISITING ARTISTS WHO AREN’T COMFORTABLE WITH INTERPRETERS”.

In the lower row, Kim has drawn a 180 degree angle, with a straight line and a semicircle drawn over it. Beneath the angle is the heading “STRAIGHT UP RAGE”. Above the semicircle is text reading “RIJKSMUSEUM FRONT DESK MANAGER”. Further right in this row is a chart of a reflex angle, which bends open to be wider than a half circle. Kim has written the phrase “REFLEX RAGE” below this chart. Above the arc of this angle, the phrase “CURATORS WHO THINK IT’S FAIR TO SPLIT MY FEE WITH INTERPRETERS”. The final pie chart to the right shows a full, shaded in circle, with a line sticking out of it. Beneath this circle, the phrase “FULL ON RAGE” is written, and above the line of the angle, is written “MUSEUMS WITH ZERO DEAF PROGRAMMING (AND NO DEAF DOCENTS OR EDUCATORS)”. Throughout the composition, the paper has faint grey smudge marks on it, and a thick grey streak runs from the bottom of the paper, up through the center, stopping right around the bottom of the first row.

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In this detail from “Degrees of Deaf Rage in Institutional Settings” Kim has written the phrase “REFLEX RAGE” below the 220 degree angled chart with a pitch black semicircle. Above the chart Kim has written “curators who think its fair to split my salary fee with interpreters. Salary is crossed out, reminding the audience that as a working artist, Kim is not given a salary, but instead makes a living on artist fees.

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Text in: “i want a President… Zoe Leonard 1992. “I want a dyke for president. I want a person with AIDS for president and I want a fag for vice president and I want someone with no health insurance and I want someone who grew up in a place where the earth is so saturated with toxic waste that they didn’t have a choice about getting leukemia. I want a president that had an abortion at sixteen and I want a candidate who isn’t the lesser of two evils and I want a president who lost their last lover to AIDS, who still sees that in their eyes every time they lay down to rest, who held their lover in their arms and knew they were dying. I want a president with no air-conditioning, a president who has stood in line at the clinic, at the DMV, at the welfare office, and has been unemployed and laid off and sexually harassed and gaybashed and deported. I want someone who has spent the night in the tombs and had a cross burned on their lawn and survived rape. I want someone who has been in love and been hurt, who respects sex, who has made mistakes and learned from them. I want a Black woman for president. I want someone with bad teeth and an attitude, someone who has eaten that nasty hospital food, someone who crossdresses and has done drugs and been in therapy. I want someone who has committed civil disobedience. And I want to know why this isn’t possible. I want to know why we started learning somewhere down the line that a president is always a clown. Always a john and never a hooker. Always a boss and never a worker. Always a liar, always a thief, and never caught.”

― Zoe Leonard

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