Margaret Price This is an unpublished paper. Please contact Associate Professor me before citing or sharing it. Thank you. Department of English Spelman College Atlanta, Georgia US [email protected] http://margaretprice.wordpress.com

Desiring Pain, Desiring Distress: Meditations on Disabled Bodymind1

“Much in the same way that instances of drag reveal the performativity of gender, reveals the fluidity and complexity of pain.”

—Dominika Bednarska, “Reconsidering Pain: What Counterculture Has to Offer”

[Thank the people who invited me and have been helping me. Encourage people to use the room in the way that is most accessible to them. DESCRIBE image on cover slide. ALSO NOTE that I will be talking about pain, and specifically mental pain, which might be triggering. I will be talking briefly about the issue of self-harm, and will also talk briefly about BDSM. Please feel invited to leave or otherwise take a break as needed.]

For a long time now, I’ve been thinking about mental pain—my own, others’, and what “mental pain” might even mean. It has so many names: mental illness, mental distress, even mental wounding, a term usually applied to veterans of declared wars. It has diagnostic and colloquial names: obsession, depression, meltdown, breakdown, break. It lives metaphorically as darkness visible, a loud room, a black dog. We are surrounded by all the names for pain.

Now, by designating some kinds of pain as “mental,” I am making an artificial distinction between body and . While I consider myself to be a bodymind—a term I’ve written about in more detail elsewhere (Price, Mad at School)—I still believe there is value in designating things that are “mental.” The reasons are political and cultural rather than essential. Robert McRuer has pointed out the danger of arguing that identities are socially constructed: once one accepts that premise, it’s all too easy to move on to the argument, “Well then, we’re all a little bit queer, aren’t we?” or “We’re all a little bit disabled.” In

1 My thanks to Shelley Tremain, Melanie Yergeau, Stephanie Kerschbaum, Hilary Selznick, Tobin Siebers, and Johnna Keller, ongoing readers of this unfolding meditation. Price / “Desiring Pain” / 2 response, McRuer argues for retaining the concepts of disabled and queer in what he calls “desirable moments” (157), those that unsettle both the asker of such questions and the identities themselves. In a similar vein, I argue that, because “the mental” is materially identified in everyday life, it deserves our attention—despite our understanding that everyone’s a little bit mental.

The mental deserves our attention because people still say routinely that certain ideas are “crazy,” that some theories or writings seem “schizophrenic” in their lack of clarity or apparent cohesion. [SLIDE of Chronicle screen cap. DESCRIBE.] The mental deserves our attention because, despite the fact that—according to my best estimate—about 400,000 faculty members in the United States have received a mental-health diagnosis, the Chronicle of Higher Education still publishes words and phrases such as “nutter” and “psycho-killer.” [SLIDE of HuffPo screen cap. DESCRIBE.] And it deserves our attention because last fall, the Huffington Post distributed a photograph of a professor at Michigan State University who “stripped naked, ran naked through his classroom and screamed.”

In short, I’m saying that because specific oppressions exist, this category exists. The mental. And as a category, the mental has an intriguing ability to bring together disability and queerness, perhaps in part because these two identities are so often suggested to exist “all in our .”

I’ve been living with my own mental pain for a long, long time. It might date back to 1971 or ’72, which is, as near as I can estimate, the time at which my sexual abuse began. It might date more recently—perhaps to my friendless years in junior high, or perhaps to my early 20s, when I began seeking therapy in the understanding that the next suicide attempt probably would kill me. Perhaps, for a doctor, my history of mental distress would date to the time I began taking medications for my mind, about nine years ago. No matter how it is counted, I know this about my mental pain: I had to live with it for a long time before I could begin to try to describe it.2 And then my attempts to describe it went on for quite some time before I could find a way to say anything interesting about it.

By “interesting,” I mean something that strangers to me—not my best friends, not my chosen family—might be able to make use of. In that effort, I have arrived at a central conviction, which has led to several questions, which have led in turn to an argument.

First, the conviction. We need to think and talk more carefully about pain—not in order to overcome it, but in order to overcome the many oppressions that attempt to annihilate us for feeling pain.

2 With Bednarska, I am more interested in looking at how people in pain speak about that pain rather than assuming that pain is, in Elaine Scarry’s term, “unsharable,” an entity that “does not simply resist language but actively destroys it” (4). Price / “Desiring Pain” / 3

Starting from that conviction, these are the questions I’ve come to so far:

[SLIDE with question #1] What is the nature of mental pain? Are there differences between mental pain, mental distress (Wilson & Beresford), anguish (Sartre), suffering, sensation (Bednarska), and strain? How are these states different from “ordinary,” that is, from “normal” kinds of pain—run-of-the-mill depression, everyday jitters? How do they differ between cultural contexts; for example, is there, as Terrie Williams suggests, a cultural form of “black pain,” related to what Joy Degruy Leary calls “post-traumatic slave syndrome,” and is there a “feminine mystique” that entails taking psychoactive “little helpers,” and how are these related to queer pain? Is queer pain itself a part of what Judith Jack Halberstam calls “the queer art of failure”? In sum, I’m wondering about the maps we shall draw of pain. If there are kinds of pain, how shall we map their differences, and most crucially, whose interests are served by the maps we draw?

The feeling of joy in pain is only one example of how very complicated our maps will have to be in order to speak, as Tobin Siebers has suggested, not in fear of pain but “in the name of pain.” By “joy in pain” I do not mean “joy in spite of pain,” in some hackneyed story in which the protagonist “suffers from” a chronic illness and yet manages, against all odds, to perform some miraculous action such as swimming with a dolphin. I mean joy in pain. One example, which both Siebers and Dominika Bednarska have discussed, is that of BDSM. Pain in BDSM, as Bednarska deftly explains, is not something to be avoided, but rather is something that “satisfies desires and clearly involves intentionality” (2); moreover, it befuddles “ingrained expectations about the body, how it should or should not feel, and what it should allow or even enable us to do” (8). One person under the lash of a singletail, for example, will shout for the whipping to stop; another will call to his top to keep on and intensify the sensation; and it is not certain, except within the boundaries of a scene, whether either person actually wants to the sensation to continue; it is also not certain whether we could meaningfully call what this person is experiencing pain. Pain in such situations, from my point of view, becomes something so multifaceted it is no longer well served by a single word.

Another example of joy in pain can be found in the experience of those who self-harm for emotional release. Cutting is one common behavior; another, less well known but also effective, is holding ice in one’s hand. Ice is in fact my own go-to remedy for the complete mental breaks I sometimes experience. These are breaks with reality so severe that I lose my sense of being a functioning adult, and am subsumed by the desire to create an intense physical sensation in my body, usually in the form of hitting my head against a wall or with some nearby object. As in an SM scene, the word pain in these situations is both all-consuming—it is the central and the most important thing I am feeling—and entirely inadequate—since at such times, I occupy a space in which ordinary metrics of pain make no sense. I think that most commentators on behaviors such as cutting miss this point. Halberstam, for example, describes cutting as an act of “dismantling” (139). In the extended analysis of Yoko Ono’s “Cut Piece,” while multi-layered and complex, Price / “Desiring Pain” / 4 seems to miss the possibility that cutting might be an act, not of “unbecoming” (140) or “unbeing” (145), but rather of re-becoming; that is, of coming back to sense and self after losing them involuntarily. This is why I hesitate to refer to behaviors such as cutting or head-banging as “self-harming.” They are self-harming only if you take a certain point of view—that is, a point of view outside the person actually performing the behavior—and, not incidentally, occupying the mind that has, for whatever reasons, requested or required the behavior.

This is what I mean when I say we must draw our maps of pain, suffering, distress, etc. with care: It would be extraordinarily easy to assume that the central person I’ve descried in each of these scenarios—the person on the cross, the person trying to get hold of a lamp with which to strike her own head—is not human at all. “Pain,” as Siebers argues, “represents for most people a source of terror and an affront to human dignity” (184), and “a painful life is simply considered a life not worth living” (184). That is, the notion that another person is in pain—or rather, is in the wrong kind of pain, or in the wrong context, or for the wrong reason—is used to justify both harming and even terminating the lives of disabled people. One of the many odd ties that binds queerness and disability is that those outside these groups seem so often to say they’d “rather be dead” than take membership in either one (let alone both).

[SLIDE with question #2] Following these twists and turns of meaning brings me to my second question: What is the place of pain in a post-binary disability-studies world? By “post-binary,” I mean a paradigm that acknowledges the impairment/disability distinction is imperfect, perhaps even fallacious. For a while—again, oddly in parallel with queer studies— maintained a fairly neat distinction between impairment and disability. Impairment, the explanation went, was some concrete and identifiable human characteristic—for example, having one leg. Disability was the raft of socially constructed limitations—both structural and attitudinal—which caused the actual problem for the disabled person. This model, explained by Mike Oliver and other early DS scholars, was unbuilt in the 1990s and beyond, in much the same way that earlier notions of a neat divide between biological sex and socially constructed gender were unbuilt in queer studies. Eli Clare’s essay “The Mountain,” published in 1999, put it this way: “My experience of impairment has been so shaped by disability that I have trouble separating the two … Oliver’s model of disability makes theoretical and political sense but misses important emotional realities” (6-7).

Although I think many, if not most, DS scholars would agree that the impairment/disability distinction is problematic, its legacy still haunts our discussions, and once again, pain seems to lurk unmarked near the center of such discussions. A recent argument on the listserv DS-HUM, for example, centered on whether a distinction should be made between illness and disability. Interesting points were made on all sides of this debate. Most interesting to me, as I watched (from the sidelines), was that nearly every contributor to this debate in some way invoked pain, but also didn’t say anything Price / “Desiring Pain” / 5 about the importance of pain itself to their argument. The notion of human “suffering” was brought up, for example, as was the argument that socially constructed obstacles are “painful to deal with.” It was also suggested that the basis of the medical humanities is an effort to “understand” the “suffering” of patients. This view of the medical humanities was contested, even in that contestation, once again the phrase “pain and suffering” came up. And yet, despite the constant invocations of pain in this discussion, pain itself was rarely examined as a phenomenon; that is, no one asked what was meant by “pain” or “suffering” in the ways it was being invoked. In fact, it did not even seem to be noticed.

I point this out because it seems to me that, if a signifier is so often invoked, yet so rarely examined, and then again so often used as justification for radically altering or even ending lives, it bears more careful examination. As we map the borderlands (fronteras) between ideas in a post-binary DS world, we must remember that our maps have important material consequences (Erevelles). What might it mean, for example, to suggest that I find it painful to have to make friendly chit-chat with co-workers on a daily basis? Can I get an accommodation that says I don’t have to talk to anyone at work? Admittedly, I’m exaggerating to make a point here, but I hope the point still holds: in a world where wellness is often equated with what Andrea Nicki has called the “cultural demand of cheerfulness,” where does that leave those of us whose are routinely painful—perhaps even, in the case of depression, composed of nothing but pain?

[SLIDE with question #3] So this brings me, twisting and turning again, to my third and last question: What is the relationship between desire and disability? Specifically, what does it mean to desire disability when the being-ness of the disability is composed of pain?

The first attempt to theorize “disability desire” beyond a fairly simple treatment of sexual desire for/of disabled people occurred in the 2003 special issue of GLQ titled Desiring Disability: Queer Theory Meets Disability Studies. Edited by Robert McRuer and Abby Wilkerson, this pathbreaking volume contains essays that are still routinely referred to in DS scholarship, particularly Carrie Sandahl’s “Queering the Crip or Cripping the Queer?” and Ellen Samuels’s “My Body, My Closet.” In their introduction, the editors explain what “desiring disability” means. First eschewing three definitions they wish to “guard against” (for example, fetishistic appropriation), they set forth the one they want to emphasize:

We might, however, “desire disability” in a fourth sense, a resistant sense, according to which a politicized disability rights movement would continue to position itself to expose these contradictions in the system (the illogic on which capitalism and other oppressive systems are founded) and to engage in “practices of freedom”—practices that would work to realize a world of multiple (desiring and desirable) corporealities interacting in nonexploitative ways. (14) Price / “Desiring Pain” / 6

This definition is hopeful; it looks toward a world that values difference and moves toward real freedom by resisting binaries such as straight/queer or abled/disabled. In Crip Theory, published three years later, McRuer further develops what “desiring disability” means, and draws more explicitly on Eve Sedgwick and Judith Butler, thus tying the definition more specifically to de-composition and repetition.

Here I return to the point from McRuer mentioned earlier, that is, his response to the potential question, “Well, then, aren’t we all queer or disabled?” McRuer elaborates to explain the ways that that question undermines, but also queerly supports, crip theory:

Recognizing that the question “aren’t we all queer/disabled?” can be an attempt at containment and affirming that I resist that containment, I nonetheless argue that there are moments when we are all queer/disabled, and that those disabled/queer moments are desirable. In particular, a crip theory of composition argues for the desirability and extension of those moments when we are all queer/disabled, since it is those moments that provide us with a means of speaking back to straight composition in all its guises. Instead of a banal, humanistic universalization of queerness/disability, a crip theory of composition advocates for the temporary or contingent universalization of queerness/disability. (157, emphasis in original)

This is the beating heart (no wait, let me resist that medicalized and composed metaphor—this is the Cheetah Flex-Foot) of what I am calling the desire model of disability. This model affirms that scarred skin is beauty; slurred speech is music; the delicate tapping of a cane is power. In a sense, the desire model takes the older slogan “Piss on Pity” and flips the script of that pity onto the normate: “Don’cha wish you could be disabled like me?”

I should say, as clearly as possible, that I am not rejecting the desire model. In fact, I’m a frequent proponent of it. I love wearing my “Neurodiversity Pride” button (which affirms both my queerness and my madness with a rainbow infinity sign). I “Like” (in the Facebook sense) the recently launched campaign “This is What Disability Looks Like,” which shows disabled people in all sorts of modes, but especially ones that play with sexual desire. [SLIDE and DESCRIBE image—use description from FB if there’s time.]

[Image description, from the Facebook page “This Is What Disability Looks Like”: “A picture of three feminine dancers with disabilities, one with light-brown skin and curly hair who is posing with crossed arms and their chin resting on their fist while seated in a wheelchair, another with light skin and dark-brown, wispy hair who is seated on the ground, with their legs extended out and holding their self up with their right arm, and another with lighter skin and blonde, wispy hair who is kneeling with their left arm (which has a tattoo on it) wrapped around their left leg (which also has a tattoo on it). Price / “Desiring Pain” / 7

They are in a dancing studio with a black floor covering and their is text on either side of them reading ‘This is what disability looks like…Sultry Dancers.’”]

When I dance among the dancing bodies at the SDS conference each year, I am conscious that the energy flowing around and through us is not just the energy of joy and pride (not to mention weariness, anger, and resistance) but is also distinctly sexual. These manifestations and others like them are critically needed in a world that has un-desired disability both in terms of sexuality and in terms of our very existence.

But here’s my concern. As I take on, work with, and think about all this desire that has poured into DS in the last ten years or so—and as I compare that desire to my own lived experience—I wonder this: [SLIDE] To what degree does the desire model, or perhaps the current application of it in disability studies and activism, move too quickly past the question of undesirability? Of pain? Of, well, badness? What about my own disability, which includes moments so painful that opening my skin or holding a double handful of ice in bare hands, feels good? What about depression in particular, which is, as far as I know, the only disability which is not merely marked by painful moments or painful symptoms but is in a sense composed of pain?

Frankly, I don’t know what to do with that last question. It makes me feel like a crusty old femme, waving my cane and snarling, “You kids quit that dancing!” and “That’s not how we did it in the old days!” But it won’t leave me alone, so I keep returning to it, trying to see if I can get hold of it a different way.

None of these questions I’ve explored have answers, really. But they did, unexpectedly, lead me somewhere—to a new conviction, something resembling an argument. It’s this: Perhaps pain, along with vulnerability, interdependence, and other particularly rich concepts, can serve as a kind of key trope in unifying our taxonomies of disability, and indeed of human variation. I believe that such key tropes are needed because thus far, in my opinion, we’ve done a great job calling for intersectionality but few of us have done a great job actually enacting it.

I believe we need not only the desire for intersectionality, but also the mechanisms that will enable us to conduct these intersectional explorations. As a rhetorician, I suggest that one such mechanism might be a collection of key concepts that cut across identity categories—in rhetorical terms, these would be topoi—that allow us to compare and contrast our different experiences without getting into the familiar ruts of comparison, addition, or competition. [SLIDE] I am suggesting that we might begin our list of concepts with ones from queer disability studies, to include:

Price / “Desiring Pain” / 8

Pain Desire Vulnerability Interdependence Faith

[Wrap up.]

Works Cited

Bednarska, Dominika. “Reconsidering Pain: What the Counterculture Has to Offer.” Modern Language Association. Seattle, WA. 8 Jan. 2012.

Clare, Eli. Exile and Pride: Disability, Queerness, and Liberation. Cambridge, MA: South End Press, 1999. Print.

Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. New York: Palgrave Macmillan, 2011.

Fineman, Martha Albertson. “The Vulnerable Subject: Anchoring Equality in the Human Condition.” Yale Journal of Law & Feminism 20.1 (2008): 1-23.

Halberstam, Judith Jack. The Queer Art of Failure. Durham/London, Duke UP, 2011. Print.

Leary, Joy Degruy. Post-Traumatic Slave Syndrome: America’s Legacy of Enduring Injury and Healing. Milwaukie, OR: Uptone P, 2005.

McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York: NYUP, 2006. Print.

--- & Abby L. Wilkerson. “Introduction: Cripping the (Queer) Nation.” GLQ 9.1-2 (2003): 1-23. Print.

Nicki, Andrea. “The Abused Mind: Feminist Theory, Psychiatric Disability, and Trauma.” Hypatia 16.4 (2001): 80-104. Print.

Oliver, Michael. The Politics of Disablement: A Sociological Approach. New York: St. Martin’s, 1990. Print.

Price / “Desiring Pain” / 9

Price, Margaret. “‘Her Pronouns Wax and Wane’: Psychosocial Disability, Autobiography and Counter-Diagnosis.” Journal of Literary & Cultural Disability Studies 3.1 (2009): 11-33. Print.

---. Mad at School: Rhetorics of Mental Disability and Academic Life. Ann Arbor: U Michigan P, 2011. Print.

Pussycat Dolls. “Don’t Cha.” Pcd. A&M, 2005. MP3 file.

Sartre, Jean-Paul. Being and Nothingness. Trans. Hazel E. Barnes. New York: Washington Square P, 1956. Rpt. 1993.

Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford UP, 1985.

Siebers, Tobin. “In the Name of Pain.” Against Health: How Health Became the New Morality. Ed. Jonathan M. Metzl & Anna Kirkland. New York: NYUP, 2010. 183- 194. Print.

“Sultry Dancers.” This Is What Disability Looks Like. Facebook. Web. 1 Sept. 2012.

Williams, Terrie M. Black Pain: It Just Looks Like We’re Not Hurting. New York: Scribner, 2008. Print.

Wilson, Anne & Peter Beresford. “Madness, Distress and Disability: Putting the Record Straight.” Disability/postmodernity: Embodying Disability Theory. Ed. Mairian Corker & Tom Shakespeare London: Continuum, 2002. 143-158. Print.