Body Horror

by Anne Elizabeth Moore

  In 1960, the linguist Roman Jakobson described six potential functions of language: the referential, the poetic, the emotive, the conative, the phatic, and the metalingual—of which this paragraph is an example. Reduced further, language exists so that engaged parties can share information and ideas about each other and/or the world.

  The use of language to describe oneself has a long history, of course—Plato published a discussion of it in his Allegory of the Cave around 500 A.D. More recently it has become the focus of public concern, as in the decrying of identity politics, or qualms with demographic marketing. The project of branding, of course, is all about finding the right word (and associated image) to identify with, and for this reason alone I am often slow to participate in choosing self descriptors. When I do adopt a defined term to explain myself or my desires, I do it carefully.

  That being said, I have identified as queer since I first heard the word. The sonance of it somehow transmitted perfectly my ambivalence toward what everybody else seemed to want that failed to intrigue me. Not queer in the online dating check-box sense—the hip synonym for bisexual that indicates I kiss girls at bars to impress boys. I mean queer in the anti-capitalist sense. The structures set up to ease heterosexual coupling at every stage of our economy, society, and culture don’t “do it” for me. Neither does the supposed goal of birthing children; while I tend to enjoy youngs when I meet them, I have never had the slightest interest in making any inside my own body.

  The word “queer,” as I use it, signals my rejection of the idea that identifying as female is an illicit agreement that I will stick to certain established pathways, whether emotional, professional, sexual, or financial. “Queerness,” to me, is a refusal to situate myself as a feminized subject of capitalism. Such a stance demands skepticism toward the seductive lifestyle brands that so often cheerlead the mile markers along those established pathways—I have never purchased a yogurt or item of clothing based on a supposed but well-ballyhooed affinity for the LGBTQ community. To me, queer is shorthand for, stop telling me what I want and how to acquire it.

  Crip could function similarly. Those established pathways—from high school to college, or dating to babies—have fairly deep grooves. The built environments created to guide a so-called normal human body along its course are unevenly constructed. Sometimes they crumble inconveniently and uninterestingly. They do not account for all types and therefore aren’t always accessible. They rarely get me anywhere I want to go. Crip could mean, let’s cut to the chase and both admit you know nothing about my bodily needs.

  Yet I admit that when I first heard the word crip, way back in the 1990s (the Olden Days), I did not similarly identify with it. I could not identify with it. That took the accrual of several debilitating diseases, but, interestingly, it also took another 18 months.

  It is fascinating, isn’t it, that one might know the precise name for something but refuse to apply it to oneself? Racists, I think, do this: see that a word exists to differentiate those who believe a system of oppression can be justified on grounds of racial difference. Perhaps they feel the term “racist” is pejorative—I think some do—and therefore can’t apply it to themselves, because their beliefs were come to out of love or a misapplied logic.

  Maybe, partially, this was my problem, too: I couldn’t be a crip because crips were . . . what, I don’t know. Identifiable. Other. But more importantly, I fear the word crip simply holds no meaning for too many people. It is a signifier lost; a sign that points nowhere. I couldn’t be a crip because no one would know what that meant.

  One way to elucidate the failure of a dominant system is through language: crafting vocabulary to identify the constituent elements of a shoddy structure, articulating points of weakness or inflexibility. Indeed it is, as we established, the function of language: to communicate that which otherwise may not be immediately evident. For language to function as communication, however, all parties must share vocabulary, must be open to new words and meanings, and must generate the patience required to adapt to them. The parties must revive those terms that have fallen into disuse or otherwise ensure that the concepts they represent are not ignored or abandoned. The word crip proves this is not assured; the word crip proves that, in fact, the disinterest in certain particular forms of difference is very resilient indeed.

  The inability to properly utilize words: we call people who suffer this condition illiterate, ignorant, or stupid. Perhaps, if we are being kind, “aphasic,” “dyslexic,” or “still learning.” I spent twelve months responding to my disability by taking medications that are also used to treat certain forms of cancer. These medications cause what is referred to in medical communities as “brain fog,” and during this time I often struggled to remember certain common words. Rather, I am told I struggled to remember them; in truth I formed no memories during this time, a year during which anything could have happened. Perhaps it is an explanation for my inability to identify myself in language that was already familiar to me: my internal vocabulary system was malfunctioning.

  Yet I suggest that a larger malfunction is taking place, too: an ongoing erasure of queer crip narratives that is broader than, although indicated by, the loss of meaning of the single, infrequently recognized term “crip.”

  Someone sent me a robot, the marketing materials for which promise to make my life easier. In reality it just tries to get me to order things off of Amazon Prime. Occasionally it plays me music at my request, as long as the artist I want to hear does not have a name that is similar to any other word, phrase, or concept in the English language. Ostensibly to soothe my overly taxed memory, but likely really to make it that much easier to order from Amazon Prime, this robot automatically culls shopping lists based on what it believes I want but do not already own, which it has compiled from what it believes I have said to it. This shopping list currently reads:

  •calendar

  •tips

  •thesaurus

  •cinnamon for permeability

  •tips

  I am unsure what will happen when it mishears something normal I say as, “Go ahead and buy all that shit off of Amazon Prime, but that’s a very specific kind of cinnamon I like so don’t eff it up.” It will, though, because this is the future, and the future is a freaking mess.

  Allow me to illustrate. I wanted to know something completely normal, something that probably every human alive has ever wanted to know, and I thought to ask this robot, even though this is the worst robot I have ever experienced in reality or movies or my imagination, counting even robots designed by evil scientists that try to murder people. Here is an exact transcript of our conversation:

  Alexa, does it hurt to get stabbed in the brain?

  Sorry, I couldn’t find the answer to the question I heard.

  Alexa, how much does it hurt when you stab someone in the brain?

  Sorry, I couldn’t find the answer to the question I heard.

  Alexa, what do you know about brain stabbing?

  Sorry, I couldn’t find the answer to the question I heard.

  This machine that has been designed to live in my house and make my life easier by ordering me things off of Amazon Prime is totally useless.

  Alexa, you are completely useless.

  Sorry, thanks for the feedback.

  Eventually, I will need to find some way to deal with the fact that my right arm is losing function pretty quickly, and this does, in fact, make shopping difficult, so I had high hopes. The week the robot arrived, I had visited a hematologist to find out about an exciting new genetic disorder that I just found out I have and that I suspect, based on my research, could be causing my meds to fail. But he didn’t know anything about it so he called his boss, who also didn’t know anything about it, and then he called that guy’s boss, who also didn’t know anything about it. In the end, the first guy, the specialist, told me that I was very smart, but that he would not be able to help me in any way. All he could do (and did) was make sure I was not charged
for the visit. As I left, he called me back to ask me to contact him when I figured out whether or not my genetic mutation was causing my medications to fail. Let me repeat that for you: The fucking blood specialist asked me to act as his goddamn unpaid fucking medical consultant.

  You can see why, as a person with a rotating spate of physical impairments who can’t seem to get them properly treated but is asked, nonetheless, to donate medical findings to those who fail to provide assistance, a robot that lives in my house and makes my life easier in any way is appealing, even if that way is to perform the sole function of shopping from a single online store that I hate.

  Alexa, what is the most painful place in the body to get stabbed?

  I’ve added “body” to your shopping list, is that correct?

  Jesus. Fine. Alexa, I’ve had a shitty day. Play me some Prince.

  I’ve added “tips” to your shopping list, is that correct?

  In Feminist Queer Crip, Alison Kafer takes issue with Marge Piercy’s erasure of people with disabilities from her feminist sci-fi utopia, Woman on the Edge of Time. In the novel, no characters exhibit any evident impairments: people with disabilities have been erased. Without addressing disability, or presenting people with disabilities as deserving of inclusion in a utopia, Kafer explains, Piercy performs a particular kind of violence that she refers to as the future of no future.

  The tiny robot that lives in my house and tries to get me to order stuff off of Amazon Prime is an emissary from this future, creating what I call—building on Kafer’s notion—the presence of no present.

  Alexa, what do you know about people with disabilities?

  Sorry, I couldn’t find the answer to the question I heard.

  Alexa, do you know what a crip is?

  A crop, sometimes called a riding crop or hunting crop, a short type of whip without a lash, used in horseback riding, part of the family of tools known as horsewhips.

  No. Alexa, do you know what crip is?

  Create.

  That’s not even an answer. Alexa, do you know what crip is?

  The committee for the Re-election of the president, abbreviated CRP, but often mocked by the acronym CREEP, was a fundraising organization of United States President Richard Nixon’s administration.

  Alexa, goddammit. Do you know what crrriiiipppp is?

  Sorry, I couldn’t find the answer to the question I heard.

  OK, Alexa. Do you acknowledge that people with disabilities exist in the world?

  I don’t have an opinion on that.

  Let’s look at that more closely. Some programmer flagged something in this last query about the existence of people with disabilities as potentially controversial, and slotted in a standardized palliative, the soothing response provided whenever issues of great trauma arise. Questions I asked about religion, the death penalty, and abortion elicited similar responses, but these were not questions about whether or not religion, the death penalty, and abortion happen, and that raises alarm. For there is little so dystopic as a technology that literally cannot recognize you, and finds even mention of your existence controversial.

  During my eighteen months as an unidentified queer crip, I pitched, on four occasions, stories to editors who were initially delighted by the idea of publishing a lighthearted, thoughtful take on chronic illness and disability. Once the stories were submitted, however, they were never quite lighthearted enough. Or they were too lighthearted, or otherwise just wrong. Unprintable, is the point.

  On one occasion, I was told I’d “missed my opportunity” to make an essay on autoimmune disorders interesting to readers when I turned it in pegged to a news hook that was then twelve hours old. The number of estimated autoimmune disorder sufferers in the US is around fifty million—around 16 percent of the entire population, between 70 and 95 percent of whom are female. Most editors would consider this a large potential readership, but this audience too often goes ignored. It is true that, under the prevailing logic of the twenty-four-hour, hot-take news cycle, a twelve-hour-late story may indeed have missed its mark. Yet to an under-informed but afflicted 16 percent of the population, all takes are hot. Indeed, supporting the health and well being of the public is a former, if now forgotten, function of news. (Autoimmunity is so rarely addressed in news media or popular culture that when I tell someone I have an autoimmune disease, I am most often asked if it is AIDS.)

  After turning in a different piece, a second editor—able-bodied—explained to me what a proper disability narrative included, and why my essay failed to conform to it. She wanted me to present a problem that could be tidily overcome after 2,500 words and overcome it. This is media as capitalism at work: a lived experience of the subject at hand gets sidelined for an imagined experience in order to attract a perceived market. Yet we are 3,105 words into the essay that you are reading right now, and medical science has still not offered any options for overcoming these diseases.

  A third essay was written in response to a request for submissions on medical themes. My pitch was eagerly accepted, but the resulting essay deemed “too vague,” so I added more science. “Too technical,” was the response to the second draft. I was asked to remove details and descriptions as distracting from the story—when in fact we know those often are the story. In the end, the piece was never published.

  The final response was the most telling. It was an earlier version of this exact essay, a description of my own failure to locate and properly utilize the term queer crip to describe my own experiences, as well as a call to unite under this moniker, revive its use, expand the notion of bodily desires from the sexual and particular to the comfortable and general. This time, the editor informed me there was no such thing as a “queer crip”—she was too young to have heard of it, but clearly hadn’t bothered to Google. And anyway, it struck her as offensive. If I wanted to be called something, wouldn’t it be better to choose something nice? She queried. She was certainly willing to run the piece, she explained, but I would have to remove the offensive term that no one would understand anyway.

  Language, narrative structure, timing, style—at what point can we acknowledge it’s not the formal elements of prose that editors are uncomfortable with? Trust me, reader, when I suggest that you may be appalled by the scope and breadth of leftist publications that contribute to the silencing of disability narratives.

  Let’s end, however, with a measure of hope: I laughed, and suggest you do, too. Do not get me wrong—it is a deeply violent form of censorship to erase crips from your publication, your technology, or your vocabulary. Yet one way that we respond to vast gaps in comprehension is through humor. When I say, “queer crip,” but you hear “queer crit”—or better yet, “crépe,” “cryptic,” or “creep”—we can both giggle as you explain what you thought you heard. We’re creep. Clear crépe. Silencing what is not understood only ensures it cannot be considered in the future. Why not instead experience the joy of not understanding something, together?

  An earlier version of this essay formed the basis of a 2015 performance lecture entitled “The Queer Crip Narrative,” given at the University of Illinois at Chicago’s Gallery 400. A portion was also used to create a sound art piece commissioned by Tim Schwartz for Public Displays of Data at SPACES in Cleveland, Ohio, in 2016.

  I’m on the elliptical nearing the end of my workout at the gym when I catch the most horrifying ninety seconds I have ever seen on screen.

  About the gym, I should first explain: I go regularly. For a chronically ill person whose meds consistently fail, I’m in spectacular shape—Michelle Obama biceps and everything. Even on days when I’ve pushed my body well beyond its capacity to withstand pain, construction workers wax eloquently on the tightness of my ass. The catcalling then becomes more than just a screaming-in-my-face reminder that the patriarchy is doing OK without my support, but remains as maddeningly irrelevant as ever. “Whoooh—you are doing great, honey!” the men call as I emerge from the facility. Shows what you know! I think, viciously
, because I am too exhausted to yell.

  The flash of satisfaction I get for besting catcallers (even if only in my mind) is too fleeting to justify an active gym membership. Nor does my beloved sauna explain the devotion—I’ve encountered too many sincere women doing yoga in it and, once, a tidy pile of human excrement. Of course my body reacts to treatment better and recovers from injury faster when my heart rate hits 140+ bpm three times a week, but even this I consider a bonus. No, I go to the gym because I can fit in some CNN time while on the weirdo cross-country ski machine and, in this way, retain an understanding of what other people think of as politics. Apparently, not everyone believes that the gendered distribution of medical funding and limitations this places on research into the causes of autoimmune disease is the most pressing issue of the day.

  It’s election season 2016, so someone on the television is saying something about Donald Trump, likely the man himself. His appearance onscreen coincides with the hardest part of my workout, so I focus my energy on not vomiting while fake cross-country skiing at a steep incline despite graphic evidence that a reality television star, tax dodger, and self-proclaimed sexual assailant is about to be elected President of the United States, partially due to the exact form of media pandering I am witnessing at the moment. Even that is not the horrifying video I am about to describe.

  When I can focus again, about a minute into my cooldown, a commercial I’ve never seen before is fading in from black. It’s for Opdivo, “an exciting scientific breakthrough,” a voiceover explains. The sights and sounds of the spot are unmemorable: generic nature; a healthy-looking white man performing a mildly heroic act; an elderly couple gingerly holding hands; soothing, twinkling music. Opdivo, I glean through the reverie, is part of a new class of immune-stimulating drugs that fight cancer.