Everyone agrees sexuality is an important part of life. But when I told people that my doctoral research focused on the sexual narratives of men with cerebral palsy, it was not uncommon for non-disabled people to ask, “Can they do that?”
The people who asked this question were not unintelligent, but they had bought into the myth that disabled people are asexual. Unfortunately, the Disability Rights Movement and academic disability studies have been slow to politicize disability and sexuality. As Barbara Waxman, a disabled feminist activist and scholar, charged in the pages of the Disability Rag in 1991, “the disability rights movement has never addressed sexuality as a key political issue, though many of us find sexuality to be the area of our greatest oppression. We are more concerned with being loved and finding sexual fulfillment than in getting on the bus.”
There are a wide range of issues related to disability and sexuality which deserve social and political attention including sexual abuse, asexual and hypersexual media images of disabled people, disability and gender issues, sexual identity and orientation, interpersonal barriers and sexual intimacy, the use of sex workers and sexual surrogates, facilitated sex, and barriers to sexual access for significantly disabled persons living in institutions and group homes. Although activists and researchers have begun to politicize these issues, disabled people continue to confront ignorance about their sexual potential and face sexual oppression in their everyday lives. By considering the history of the disability community’s politicization of these issues, we are able to develop research and advocacy strategies which will effectively dispel the myth of disabled people as asexual.
The disability and sexuality research of the 1950s through much of the 1970s was generated in response to the loss of sexual function and/or sensation by heterosexual men who were disabled in early to mid-adulthood because of a major physical trauma, often a spinal cord injury. These men were sexually compromised in varying degrees depending on the location of the injury. They came under intense scrutiny by research scientists who investigated their loss of ejaculatory ability and/or physical sensation in their genital area. Operating from a medical model–which emphasizes function over other aspects of the person– these researchers’ initial concern was with disabled World War II veterans. In retrospect, this obsession with sexual and reproductive function also seems part of a larger cultural anxiety that views any lessening of penile potency as a diminishment of masculinity. This same anxiety is likely related to the phenomenal sales of the impotency drug Viagra among middle and older adult males. This early research largely ignored women, and completely ignored racial and sexual minorities, reflecting that white, heterosexual masculinity was prioritized.
In the past, medical experts have routinely sterilized people with developmental disabilities—and as recently as the early 1970s, disabled people have reported unwanted sterilization. A man whom I interviewed explained that at 25 he underwent a bladder operation but was not told by his physician that one of the outcomes would be loss of ability to ejaculate outside of his body. Instead sperm would be deposited in his bladder. As a young teenager this same man, after having undergone surgery on an un-descended testicle, reported that an attending nurse said, “Why did they bother?” While blatant rights violations such as the first example are more infrequent today, the eugenics policies of the past often take more subtle forms such as inherent biases against impairment in genetic and abortion counseling of parents to be.
Because medicine has emphasized correcting deficiencies, it is questionable whether or not adequate attention has been given to disabled people’s capacity for sexual pleasure and reproduction. It is still not unusual for disabled people to report that during physical exams they are not asked any questions about sexuality by their physicians which is not the case for most non-disabled people. Medical model research which focuses exclusively on sexual function goes hand in hand with the power and authority medicine wields in disabled people’s everyday sexual lives.
Normative understandings of how the body is supposed to function underlie medical diagnoses, treatments, and even rehabilitation and any deviations are targeted for correction. In the case of disease, the medical model is appropriate in order for the patient to “get better.” However, impairments are usually permanent and are better understood as bodily variations rather than “deviations.” In my own research, most of the men I interviewed had reached maturity with poor body images. The majority had a history of medical procedures, surgeries, and rehabilitation therapies which were aimed at correcting and normalizing their bodies, often to no avail. This medical framing of their bodies as deviant not only negatively influenced these men’s sense of their bodies but also negatively affected their sexual selves. One of the men I talked to, who had experienced various medical interventions lamented, “My body image comes directly in my face when I’m dealing in some kind of relationship with a woman. It comes up a lot….once again I put pressure on myself….I would say how can she like me with my weird-ass ****ing body and the way I walk?”
For some disabled people, medicine’s authority has been diminished by the Disability Rights Movement’s success in separating biological impairment from disabling sociocultural attitudes and practices. On the surface, this distinction between “impairment” and “disability” appears to limit medical authority by focusing clinical attention upon impairment. Disabled people are, in turn, empowered to protest against overt prejudice and oppression in their day to day lives. Disabled people can, it seems, “put medicine in its proper place!” However, upon closer inspection a focus on impairment cannot be easily restricted to disabled people’s encounters with physicians and the medical system. A fundamental medical bias which attempts to impose norms upon bodily functions remains unchanged and this influences cultural values and attitudes toward disabled people. Medicine has helped to create and maintain a worship of the “body beautiful” as a cultural imperative. It is a moral edict that exerts tremendous influence on disabled people’s body images and sexual selves—as it also impacts many non-disabled people’s perceptions of disabled people’s sexual desirability.
The emergence of the Disability Rights Movement in the 1970s was a major impetus for challenging the medical model’s dominance in understanding disability. This critique was only weakly extended in the case of disability and sexuality research and practitioner interventions. In the late 1970s and early 1980s there was a brief time when disability and sexuality seemed primed to move out from under medical dominance. A disability and sexuality unit at the University of California, San Francisco, which incorporated a social understanding of disability and sexuality issues, was one example of progress in this direction. While some of this work criticized the asexual social attitudes and cultural prejudices directed toward disabled people, and focused on educating professionals who worked with disabled people, a politically charged critique was never sustained. Were it not for a lack of funding during the Reagan years, a political understanding of disability and sexuality might have grown.
In the early 1980s through the mid-1990s, there were a few advocates who attempted to put sexuality on the political and research agendas of the Disability Rights Movement. People like the late Barbara Waxman and Harlan Hahn, a disabled political scientist, railed against a pronounced lack of social and political analysis on these issues. However, as Waxman has suggested, the Disability Rights Movement as a whole has focused on what they saw as more important access issues such as architectural, transportation, and employment barriers and neglected the more difficult challenge of changing values and attitudes which underlie much of the sexual oppression of disabled people.
The publication of The Sexual Politics of Disability: Untold Desires (1996) was a major turning point in the debate about disability and sexuality. This critical study conducted in the United Kingdom by Tom Shakespeare, Kath Gillespie-Sells, and Dominic Davies, put sexuality squarely on the political map of the Disability Rights Movement. The authors argue that research on disability and sexuality is still predominately conducted by professionals from medical, psychological, and sexological backgrounds. But this medical and clinical focus has not been sufficiently challenged by disability rights advocates and disability studies scholars. The researchers contend that, “both academics and campaigners have de-prioritized sex and love.” The work by Shakespeare, et al. is the first systematic study of disability and sexuality that has prioritized the relatively simple goal of discovering what disabled people think and feel about their sexuality. The book chronicles both the sexual oppression encountered by disabled people, as well as the more positive sexual experiences of disabled people. The Sexual Politics of Disability has the distinction of having galvanized disability rights activists and disability studies scholars. The subject of disability and sexuality no longer appears to be “fluff” that can wait until after other obstacles to disabled people’s rights have been abolished.
Disability and sexuality conferences, a spate of new politically-charged writing on sexual oppressions and disabled people’s sexual rights, and a lively disability and sexuality listserv all attest to a burgeoning interest in these issues. It has taken a long time, but disabled people’s sexuality has finally become a central item on the agenda of the Disability Rights Movement and academic disability studies. Progress in transforming disabled people’s sexual status and enhancing their sexual well-being will depend on a range of research and advocacy strategies including the framing of issues in terms of sexual rights, the broad public dissemination of disability and sexuality research findings, advocate and activist pressure on media and policymakers, and the self-promotion by disabled people of positive models of their sexuality. Hopefully, increased academic and activist attention to critical disability and sexuality issues coupled with strategies such as these will result in positive changes in public perception of disabled people’s sexuality; for starters, replacing the myth of disabled people’s asexuality with the more accurate understanding that “of course, they can do that!”
Russell P. Shuttleworth, Ph.D.
Russell P. Shuttleworth is an Ed Roberts Postdoctoral Fellow in Disability Studies at the Institute of Urban and Regional Development, University of California, Berkeley.
Preparation of this article was supported by the Ed Roberts Postdoctoral Fellowship in Disability Studies, University of California, Berkeley, funded by NIDRR, the Department of Education
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