This is the paper I gave at ASTR a few weeks ago. . . Thought those of you who don't spend time and $ at academic conferences might enjoy reading it.
Sexy Beasts: Incarnating Disabled Desire
I’ll start out by saying this isn’t the paper I thought it was going to be when I proposed it, and it’s not a paper I could have even imagined writing until this past spring. When I wrote the abstract, I was in a cozy flat in Notting Hill. I was in London because while researching the exotic dance industry there a decade ago, I had discovered The Erotic Awards Showcase, an extravagant annual performance that featured a mixture of able bodied and disabled performers. The event served as a fundraiser for Outsiders, an organization dedicated to facilitating and celebrating disabled people’s sex lives. I promise that I’ll describe that performance in a bit, but for now, let’s just say my mind was blown and my interest piqued. I wanted to know—how did people with such extra-ordinary, often disorderly bodies discover, express, and perform sexuality in a culture that attempts to circumscribe them within relentlessly asexual categories and narratives? And, quite selfishly, what could I, in all my able-bodied, vanilla naiveté, learn about sexuality from such performances and people?
I’ve been coming to ASTR for a long time—I think my first was in 1999, at the CUNY Graduate Center, just after another recent presidential election in which the winner of the popular vote was thwarted by the Electoral College. Kirsten Pullen and I went together, in a long ago era before smartphones, asking people all along the way from Madison if we had a president yet. For many years after that Kirsten and I ran working sessions on intersections between dance and theatre, so I’ve both read and written and seen many ASTR papers over the years, and I have an idea of how they’re supposed to go. So I hope you’ll be patient with this offering, which can’t go the way it was supposed to, and which I can already tell as I’m writing this is going to be a little like some of the bodies I interacted with in London: unorthodox, awkward, sutured and stitched together, inescapably intimate, and unruly. Because when I set forth to research disability and sexuality armed with my Fulbright, my confidence in myself as an ethnographer, my well-honed sense of kinesthetic empathy, my understanding of the material reality of bodies, and my fierce devotion to writing the underwritten stories of flesh and tendon and fascia and skin, I had no idea that I was about to join my research subjects as a disabled body myself.
I can imagine that there’s some percentage of you now looking me over, trying to see what disability I could be talking about. Then there’s another group that is working through the long list of invisible disabilities, many of which go unacknowledged by both the general public and some parts of the disability rights movement. ASTR actually played a small role in my discovering this disability—it was during last year’s conference that I began to notice that my persistent back pain was becoming more and more problematic. And I know—you didn’t come here to hear someone complain about back pain, but bear with me for just a moment. A day or two after the conference, I tripped on my way home after voting for yet another fucked over winner of the popular vote, and suddenly the pain was violently acute; but later that night, while laying flat on the floor watching the election returns while scarfing down milk-duds I had stolen from my kids’ Halloween stash, I figured the pain had been a sort of premonition of the impending apocalypse, and that was that. But while I was in London, it finally got so bad that I went to urgent care, and they diagnosed me with the flu and sent me home with a little pamphlet with hand-drawn pictures of genderless figures doing core exercises.
For your own future reference, if a doctor gives you this kind of pamphlet, get yourself to a better doctor. Because it wasn’t the flu, or weak core muscles—it was Stage IV metastatic breast cancer that had devoured my spine to the extent that the surgeon described my thoracic vertebrae as “ghosts.”
As probably far too many of you know, cancer sucks. Stage IV cancer sucks immensely. But it has given me, among other things, a new perspective on my research. I had wanted to understand how Outsiders and its sister organization SHADA, the Sexual Health and Disability Alliance, supported disabled people’s sexuality; why this seemed like such a radical mission, even in the context of disability rights movements; and how disabled people themselves experienced, performed, and deployed erotic desire both personally and politically. So now, missing parts of my spine, a breast, ovaries, fallopian tubes, and even the slightest whiff of estrogen, irradiated and chemo-ed and on a 24 hour a day, seven day a week regimen of opium-eating, I reread articles and interview notes with an entirely new set of eyes. Not literally tho—I still have those.
My work on exotic dance had also included a participant-observer element, although to be fair, in that I case I had a choice. Nonetheless, my new status brings a similar sense of palpability and urgency to my initial questions about disability and desire. And as with that previous project, I again found myself guided by Audre Lourde’s vision of desire—as something completely opposing the tawdry, exploitative parade of tits and ass rammed down our wallets by consumer culture,
Or the current cascade of dic-pics and door-blocking masturbators and pussy-grabbing presidents that threaten to drown the positive power of the erotic in a sea of toxic cum that would no doubt cause Lorde to roll over in her grave,
—or if we’re lucky, perhaps rise raging from it, like an avenging angel/ravenous zombie.
Lorde advocates for the power of the erotic in the lives of women, but it isn’t difficult to extend her generosity to other groups who have been historically separated from that power, including people with disabilities. She writes:
"The erotic is a resource within each of us [. . .] In order to perpetuate itself, every oppression must corrupt or distort those various sources of power within the culture of the oppressed that can provide energy for change. [. . .] Recognizing the power of the erotic within our lives can give us the energy to pursue genuine change within our world, rather than merely settling for a shift of characters in the same weary drama."
Many aspects of the “weary drama” have grown wearier since Lorde’s death from breast cancer in 1992. However, for disability rights movements, the 1990s were anything but weary. In the US, the Americans with Disabilities Act (ADA) took effect in 1990, followed by the Disability Discrimination Act (DDA) in the UK in 1995, energizing political engagement and instigating new discourses, modes of representation, and performance strategies; but, as UK disability studies scholar Tom Shakespeare notes, “ending poverty and social exclusion comes higher up the list of needs than campaigning for a good fuck.”
When, for example, you are unable to attend political gatherings because you often can’t get your wheelchair on a bus —even now, even in London—it can be hard to view sexuality as a fundamental human right worthy of equal effort.
Romina Puma, a stand up—or as she says, sit down—comedian who has muscular dystrophy, talked to me about the ongoing struggle for such basic accessibility, including a nasty battle in the media between wheelchair users and parents with unwieldy prams. On the other hand, Romina is also dedicated to maintaining a fulfilling sex life, and upon our first meeting asked me to join her in “going on the pull” at a local club (when I told her I was married, she suggested I come anyway as her wingwoman, to make sure she didn’t suffer a case of beer goggles). Romina also worked with the disability advocacy group SCOPE on an “A to Zed” series of videos on sex and disability, part of its #EndTheAwkward campaign. Romina presented “K,” for Kama Sutra.
I particularly like the headline above this video—“No matter the disability, there’ll always be a position that brings a smile to both your faces.”
This kind of optimism was shared by all the people I met through Outsiders, and it animates performers and audiences at the Erotic Awards Showcase. Much of this good cheer can be attributed to the organization’s founder, Tuppy Owens, and her determination to celebrate what Carrie Sandahl calls a “radical stance toward concepts of normalcy.”
Involved in London’s swinger scene in the late 1960s and throughout the 1970s, Owens writes that “Sex has always been my favourite activity, so I couldn’t bear to think of anyone my age having had none.” After successfully solving this problem for one disabled colleague and found a wheelchair accessible strip club for another, Owens set about forming a group that would combine education, advocacy, and social/sexual opportunities.
There is something specifically British about Outsiders, although many of its members are from elsewhere. The conjunction of significant, serious concerns with an attitude of flamboyance bordering on—or, let’s be honest, crashing into—the bizarre was something I encountered in both interviews and performances, and not just within the context of this particular project. Chiqui, a Venezuelan exotic dancer who regularly performs in the Erotic Awards Showcase and had been awarded “Stripper of the Year,” told me that this friction was why she stays in the UK, explaining, “I love England. People here are so perverted.”
Perhaps this is why London’s exotic dance and neo-burlesque community embraced Outsiders and vice versa, coming together to create erotic performances that exalt in the spectacular pleasures and powers of a staggering range of bodies, cheekily accosting audience assumptions about ability, beauty, sex, desire, and the capacities of various human orifices.
The Showcase has gone by a number of names and formats, and its awards—symbolized by the flying penis--have increasingly gone to activists and advocates as well as performers, but it remains a highly theatrical event. When I attended several years ago, the show was emceed by Mat Fraser (pic), an actor probably best known in the US for his role on American Horror Story, and the production showcased baroque scenarios and pornographic novelty acts that had my husband white-knuckledly squeezing my hand. Fraser himself performed a witty parody of a striptease act in which he stripped not just his clothing but also his prosthetic arms, and stroked himself lasciviously with his fiberglass limbs.
Other performers included non-binary nuns, a bondage-obsessed Borat impersonator, a cowboy hat wearing young man who billed himself as “A cute self-fisting porn star,” and the self-explanatory “Sleazy Mike.” On unicycles, trapezes, crutches, and wheelchairs, armed with whips, chains, cocktail shakers, and prostheses, these performers exploded myths of chaste disability and reveled in rebellious sensuality.
Now, I have to admit, I was enthralled, but after the glow of the night had waned a bit I started to wonder about the relationship between what I had seen and the lived experiences of Outsiders members. Could this spirit of freedom and pleasure really map onto the difficulties disabled people faced around sexuality both practically and socially? According to my completely statistically insignificant sample, the answer is yes. Or sometimes, YES! in all caps. Of course the people I interviewed were self selecting, having signed up to be members of a group whose mission is to support the sex lives of the disabled. So on one hand it would be easy to put aside their comments; on the other hand, this was never meant to be a quantitative study, and I wanted to listen to what they had to say—as I think you will too.
Simon, a psychotherapist who had suffered polio as a child, described a connection between the sort of “non-normative” sexual freedom honored by the showcase and the sex lives of disabled people, based on his own history as well as those of clients:
"Having a physical disability means you have to widen your horizons. The way you experience sex by definition has to be ‘creative’ or ‘alternative’ or ‘abnormal.’ You might start out trying to be like everyone else, but obvious impairments mean you just have to get on with it, you have to develop an understanding of the breadth of sex. I think disability is an erotic advantage—you have to think creatively beyond fucking. And let’s face it, some people are sexier than others. If you have a strong sex drive, it forces you to take risks —your sex drive is greater than fear."
You don’t have to be disabled to know what it’s like to have fear get in the way of sex. And in fact, most of the Outsiders members I spoke with cited the fear as the most intractable obstacle to a fulfilling sex life. Sometimes the best option, especially for those who have had limited opportunities for finding partners, can be a sex therapist or sex worker trained to deal with physical disabilities.
The legal status of sex work in the UK is quite complicated, but one of the issues raised by both sex workers and disabled clients is that while you are allowed to be paid for sex, you aren’t allowed to advertise; another is that if a person is unable to ask for services him or herself, a caretaker isn’t allowed to ask for them—that’s considered procurement. But after interviewing two sex workers in this arena, it is hard to imagine anyone without specific training and expertise being able to do what they do.
Sue, a sex worker and licensed therapist, told me about a client who had been paralyzed from the neck down by a motorcycle crash. In his early 30s, he had been very socially and sexually active before the accident, and desperately missed that aspect of his life. He knew that his lifespan would be cut short by his injuries, and he came to Sue asking if she could help him experience orgasm again before he died. Sue began by asking where he did have sensation, which turned out to be from the base of his throat up. Over several months, they worked together to painstakingly test out each little bit of this area, millimeter by millimeter, creating a map of tiny new erogenous zones. Sue engaged his other senses as well, trying to discover if certain scents or sounds would add to his pleasure. Eventually they got there, and he got his wish; he died only a few months later.
The cartographic project Sue and her client undertook wouldn’t make for a fun burlesque number, but nonetheless shared the sense of fortitude and playfulness that characterizes much of Outsiders’ work and membership. Sometimes when I’ve told this story to non-disabled friends, they call it “inspirational,” which is a tricky word—it’s part of those asexual narratives I mentioned at the beginning. The trope of the disabled hero “overcoming” their disability is damaging and widely observable in popular culture, right up there with the one about the disabled person’s choice to commit suicide because their disability makes life no longer worth living. But all the same, I did find many of the people I interviewed inspiring. And at least one person told me that he finds the notion useful as a means of what Romina called “pulling”:
“'Inspirational' is a relative concept, and one which depends entirely on whom I am supposedly inspiring! For example, if it is f friends and family, I hate it because I associate it with pity. However, if such is the impression I give to a woman I find attractive, or a judge, or anyone else I perceive as beneficial to my interests, then I wish to be the most inspirational chap they have ever encountered."
This lovely caveat came from Diego Soto-Miranda, a successful barrister who volunteers with SHADA in its efforts to change sex work laws.
He has also had Severe Spinal Atrophy from birth, which means that while he has full sensation, he isn’t able to move any part of his body below his neck, and even his facial movements are somewhat restricted (although he has the best sarcastically cocked eyebrow I’ve ever seen). This condition has in no way prevented him from leading a full—and at times, he said, overly full—sex life, which included numerous “unofficial” as well as “official girlfriends”—official, he explained, meaning that the emotional attachment was serious enough to warrant asking the woman in question to meet his overly protective mother. Currently, he and his official girlfriend of four years are discussing starting a family.
Diego claims he learned all he knows about how to be a man and how to romance women from the men in his large Columbian family; no one, least of all him, doubted that he could fulfill the duties of Latin masculinity as well as anyone else. When he got to university, he found himself suddenly surrounded by women who wanted to “nurture” him; as he said, he “may have” taken advantage of their desire to take care of him, but no one was sorry he did. As he learned from his experiences, Diego developed a three part strategy for wooing women, which he dubbed “RIL (reel) her in. RIL stands for 1) Respect; 2) Interest (as in, make her feel “like not just the world, but the entire Milky Way revolves around her”); 3) and Laughter. Diego admitted that this was all easier said than done, and required loads of practice; when I suggested it also might require natural talent, his response was that incredible cocked eyebrow.
After I was diagnosed, it took me a while to emerge from the miasma of “weary drama,” but when I did, I wrote to let Diego know. This is a bit of his reply:
"If it were possible for me to have a “deep” thought, then I would suggest that my entire concept of being “inspirational” is premised on the view that everything about me is a tool I am obliged to use as a chisel and hammer to sculpt the masterpiece I am obligated to attempt to create from the wall of obstacles placed in front of me. Do not tell anyone as I have an image to uphold, but although the challenge is great, the sense of achievement and self-glorification is even greater.
But I am no martyr! When people say “no pain no gain,” I say balls to that. God made me to enjoy life, not to make other people’s l lives for them—well maybe with the exception of children. Which takes me on to sex, and reminds me of that great English philosopher John Cleese: “life is a terminal disease, and it is sexually transmitted”!
When I submitted the abstract for this paper, the subtitle was “performing disabled desire,” which is how it’s still listed in the program. But after my cancer diagnosis, “performing” didn’t feel like the right word anymore. At the start of the project I had asked what I could learn about sexuality from my research subjects, but now that I am one, the question has taken on a radically new meaning. I’m no longer just watching and listening and learning from others performing disabled desire; ready or not, I’m in it now, inhabiting a small space on an existential stage, incarnating that desire myself. This isn’t to say that those of you who are temporarily able shouldn’t explore the power of the erotic to instigate change—quite the contrary. Instead, I hope we can amplify voices like Diego’s, and listen better to all “outsiders”—and that we can all create positions, personal and political, that will “bring a smile” to every face.
 ‘Disabled Sexuality: Towards Rights and Recognition.” Sexuality and Disability, Vol. 18, No. 3, 2000, 159-166 
 Carrie Sandahl, “Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance.” GLQ: A Journal of Lesbian and Gay Studies, 25-56 (26).