Disability, Sex and

Historically, in modern European and North American societies, disabled people's sexuality was generally avoided in cultural discourse, or if it was mentioned, disabled people were cursorily viewed as asexual. During the second half of the twentieth century, medical and rehabilitation professionals carved out a cultural space for disability and sexuality within the parameters of physiology, restoration of sexual function, and psychological adjustment. Whereas activists and scholars occasionally mentioned some of the cultural and sociopolitical implications of disability and sexuality, until the mid-1990s, a functional view of this subject held sway. However, around the turn of the twenty-first century, the convergence of disability activism, progressive social policy, and changing trends in human science research gradually provided impetus to raising disability and sexuality as both a conceptual and social justice issue. The political battles of the Disability Rights Movement and disability legislation have resulted in increased access for many disabled people to social contexts in which they were previously excluded. The philosophy of independent living has meant that people with significant impairments are increasingly moving out into the community—into their own homes/apartments or, at minimum, into group-home-living situations. This public exposure and greater societal access is also growing into a sense among disabled people of their right to a sexual life. At the same time, human science research is finally prioritizing disabled people's own sexual concerns and critically investigating this intersection within a sexual inequality and sexual access conceptual frame.

The result of this change in research perspective and the claiming of sexuality by disabled people is that a wide range of important issues are finally emerging from the shadows. These issues include access to quality reproductive health care for disabled women, sexual abuse, lack of positive media images of disability and sexuality, disability and gender issues, barriers to sexual expression and/or negotiating sexual intimacy with others, the high rate of poor sexual self-esteem and poor body image, use of sex workers and sexual surrogates, personal assistant services and facilitated sex, disability fetishism, and the multiple oppressions that ethnic and sexual minority disabled persons face. Only several of these issues can be dealt with in this short article.

One concern that is emerging as important is the issue of facilitated sex. Facilitated sex is sexual activity in which a disabled person is assisted by someone who provides personal care or personal assistant services (PAS). This assistance could include positioning disabled persons for masturbation, undressing them, helping them to stimulate themselves, helping them to stimulate their partner's body, positioning them for sex with a partner, transferring them to a bed, purchasing condoms, or soliciting the services of a sex worker. In the United States there is still no nationally based PAS program, and services vary from state to state.

While the pragmatic and ethical issues of facilitated sex abound in those situations where the disabled person resides in a familial, an institutional, or a quasi-institutional setting and/or has no input into the decision of who provides PAS for them—even for those disabled people living independently in the community who control this decision and directly pay their personal assistants—there are a myriad of concerns. The most obvious is that there are no public policy guidelines in place to govern practice around facilitated sex. Negotiating this service with a personal assistant is left entirely up to the disabled person and is fraught with ethical and legal dilemmas. For example, facilitated sex transgresses the normative view of sex as private and as an autonomous project. Therefore, even though they may be helping an individual with sexual activity, personal assistants risk being viewed as sexual participants, and because payment is involved, they may be legally liable.

A controversial issue among disabled people is the world of devotees, or amputee fetish. This issue challenges traditional notions of sexuality, desire, and appropriateness within the disability community. Devotees are people who are romantically interested or sexually aroused by people with certain impairments. Whereas there are devotees of people with many different kinds of impairments, amputees are those most commonly fetishized. In terms of gender, men overwhelmingly outnumber women devotees. The traditional medical understanding of this phenomenon labeled the desire for an impaired body as pathological. Discussion within the disability community has been heated. A question that is often raised is what does labeling disability fetishism as pathological say about the cultural perception of impaired bodies? Whereas there are some disabled women who are suspicious of desire based on fetishism and find it exploitative, there are others who exalt the opportunity, pleasure, and sometimes, intimate relationships they access via the devotee community.

A more general issue for many people with moderate to significant impairments is the multiple obstacles to sexual access that they often face; that is, access to sexual expression, sexual well-being, and negotiating sexual intimacy with others. Sexual well-being is reliant on psychological, social, and cultural supports that sustain a positive sense of one's sexual self. The availability of these supports for disabled people is often constrained. For instance, people with early onset impairments sometimes report that when they were growing up, family members did not expect them to experience a sex life or marriage. Disabled people's sexual expression and opportunity to negotiate sexual intimacy with others is also situated within a cultural and sociostructural framework of inclusion-exclusion. Depending on a disabled person's particular situation, other relevant aspects of this framework may include physical access to environments and social contexts in which sexually relevant interpersonal encounters may occur, monetary access, programmatic access to personal assistance services, access to transportation, communication access, and many others. Perhaps the most powerful influence on disabled people's interpersonal sexual negotiations, and which presents formidable difficulties, is the adverse context of cultural images and meanings of disability and sexual desirability.

Yet many disabled people resist hegemonic notions of sociality, bodily function, desirability, and the sexually oppressive practices that often ensue and manage to experience either normative sexual lives or carve out alternative and creative sexualities. For example, some persons with spinal-cord injuries who may have lost genital sensation and/or erogenous zone sensitivity learn to shift their erotic attention to areas of their body that are still sensitive. Another example is the incorporation of spasticity into lovemaking by a couple in which one person has significant cerebral palsy. By resisting sexual oppression and incorporating their own corporeal difference into their sexuality, some disabled people manage to expand the cultural sense of what constitutes sexual expression and sexual relationality.

BIBLIOGRAPHY

Kafer, Alison. 2004. "Inseparable: Gender and Disability in the Amputee-Devotee Community." In Gendering Disability, ed. Bonnie Smith and Beth Hutchison. New Brunswick, NJ: Rutgers University Press.

Mona, Linda, and Sandor Gardos. 2000. "Disabled Sexual Partners." In Psychological Perspectives on Human Sexuality, ed. Lenore T. Szuchman and Frank Muscaralla. New York: Wiley.

Mona, Linda. 2003. "Sexual Options for People with Disabilities: Using Personal Assistance Services for Sexual Expression." Women & Therapy 26 (3/4): 211-220.

Shakespeare, Tom; Kath Gillespie-Sells; and Dominic Davies. 1996. The Sexual Politics of Disability: Untold Desires. New York: Cassell.

Shuttleworth, Russell. 2000. "The Search for Sexual Intimacy for Men with Cerebral Palsy." Sexuality and Disability 18(4): 263-282.

Shuttleworth, Russell. 2007. "Disability and Sexuality: Toward a Constructionist Focus on Access and the Inclusion of Disabled People in the Sexual Rights Movement." In Sexual Inequalities and Social Justice, ed. Niels F. Teunis and Gilbert Herdt. Berkeley: University of California Press.

                                       Russell Shuttleworth