Introduction to the Special Issue - Springer Link

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This special issue of Sexuality and Disability is the second of two that showcase papers presented at the conference, “Disability, sexuality, and culture: Societal ...
Sexuality and Disability, Vol. 18, No. 4, 2000

Introduction to the Special Issue Russell P. Shuttleworth, Ph.D.1,3 and Linda R. Mona, Ph.D.2

This special issue of Sexuality and Disability is the second of two that showcase papers presented at the conference, “Disability, sexuality, and culture: Societal and experiential perspectives on multiple identities.” A diverse multiand interdisciplinary group of social and behavioral scientists including educators, psychologists, sociologists and anthropologists, as well as representatives from community services and advocacy organizations participated. The conference’s goals were to explore a psychological, social, political, and cultural analysis of diverse factors of sexual well being, sexual health, sexual representation and sexual oppression of disabled people’s sexuality. Within this framework, the conference highlighted some of the current trends in disability studies research and the ways in which this discipline is conceptualizing sexuality research. As seen within this issue, researchers framed, articulated, and contextualized an emerging disability and sexuality research agenda for disability studies. Whereas the first special issue focused on general overviews of disability and sexuality as well as relevant clinical and application methods, the present issue will specifically highlight recent social and cultural research, issues of cultural representation, and criticisms of previous and current approaches to disability and sexuality research. Constructionist perspectives have called attention to the fact that previously regarded “natural” categories such as sexuality and disability, are historically and culturally constituted. This is not to say that sexual relations haven’t always been an important dimension of human experience or that people we term disabled haven’t always existed. Yet, even staying within the confines of Western history, one can see how they have been constructed very differently (but also with some continuities) in different historical periods. Rather than bemoaning the fact of sociocultural change, this awareness 1 2 3

University of California, San Francisco, San Francisco, CA. World Institute on Disability, Oakland, CA 94612. Address correspondence to Russell P. Shuttleworth, Ph.D., World Institute on Disability, 510 16th Street, Suite 100, Oakland, CA 94612. 229 0146-1044/00/1200-0229$18.00/0 䊚 2000 Human Sciences Press, Inc.

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can provide a critical edge, as we frame our research in terms of transforming negative perceptions of disabled people’s sexuality. Important groundwork for this transformation is to critically examine the ways in which social processes and cultural representations currently influence disabled people’s sexual circumstances, their lived experience of these situations and the paths they take in the face of what is often sexual oppression. Also crucial is to reflect on how our own assumptions as researchers can influence our work. And now to the contributions. Alice Wong reports on her in-progress research focusing on the reproductive health care experiences of disabled women. Asking the question, “How do disabled women navigate through the health care system as they search for care that ‘fits’?” Wong shows through her analysis of interviews with several women, how the theme of work encompasses both certain impediments to adequate health care and the agency that these women exercise in the face of these barriers. Anne Guldin presents some findings from her recent study in which she investigated “how people with mobility impairments self-interpret and selfclaim their sexuality” in light of our society’s desexualizing sociocultural context. In the present paper, she effectively shows how some of the dominant cultural meanings of sexuality and disability are both challenged but at the same time reinforced by the participants in her study. Russell Shuttleworth presents several aspects of his research on the search for sexual intimacy for men with cerebral palsy. Shuttleworth first discusses the range of social and cultural issues that research participants felt were significant in trying to negotiate and establish sexual intimacy with others. Then using several concepts derived from recent anthropological and disability studies work, he explores the men’s contention with these barriers and notes several aspects of self and society that helped facilitate the establishment of sexual relationships for them. Ray Aguilera conducted research on the devotee phenomenon with both disabled people and “devotees,” as well as explored the many devotee websites. Critical of previous disability and sexuality scholarship on this subject, he raises some cogent points about the nature of this attraction on his way to asking whether it empowers or exploits disabled people. Pam Block’s paper is concerned with the cultural representation of the sexuality of women with cognitive disabilities. Block examines the way women with cognitive disabilities have been historically portrayed in the United States. She accomplishes this through an analysis of five examples (four non-fiction and one fictional) and consistently finds their representation as “sexually and socially threatening, and in need of professional management and control.” Shelley Tremain’s paper is highly critical of what she perceives as a “pervasive heterosexist assumption” that exists within the field of disability and

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sexuality studies. Tremain perceives the distinction between sex and gender (parallel to that of nature and culture) and the respective binaries it produces, i.e., male-female and men-women, as politically motivated, which excludes others, for example, queers, cross-dressers, dykes, fags and transgendered people, from the conceptual field of gender. These distinctions and exclusions pervade disability and sexuality research as previously and currently practiced. Mitch Tepper’s paper details our society’s historically conflicted relation to sex and the ways that a more sex positive culture doesn’t necessarily equate to sexual pleasure for disabled people. Tepper’s main point is critical: it is not necessarily simply sex that is missing from the traditional disability studies agenda, it is especially sexual pleasure and all this means for disabled people’s claiming of sexuality today. Examples from his research on sexual pleasure and spinal cord injury are offered. All in all, there is much in this issue that will challenge our traditional conceptualizations and approaches to the study of disability and sexuality. From both editors’ perspectives this is not simply to debunk old ways of doing things. Indeed, there is much in traditional approaches and ways of thinking that should be retained. The papers presented here show us, however, that attention to how disabled people are sexually represented in a society, the diversity of social and cultural factors that can influence their sexual lives and critical reflections on the conceptual underpinnings of our research are important additions to a more holistic disability and sexuality studies.