Introduction to Special Issue

Sexuality Research & Social Policy Journal of NSRC

March 2007

http://nsrc.sfsu.edu

Vol. 4, No. 1

Introduction to Special Issue Critical Research and Policy Debates in Disability and Sexuality Studies Russell Shuttleworth

For many years, sexuality has been a peripheral issue in the struggle for the rights of disabled people, both within the sexual rights movement and in academia. Today, however, this intersection of disability and sexuality is emerging as an important social justice concern—a concern that is central to the inclusion of disabled people in postmodern societies. The unprecedented international conference held at San Francisco State University in June 2000, titled Disability, Sexuality, and Culture: Societal and Experiential Perspectives on Multiple Identities, was a watershed event out of which crystallized a sense of common purpose. This conference had a profound impact on all those who attended, and much subsequent work has been influenced by the convergence of the many issues and ideas that were raised there. The First International Conference on Queerness & Disability, held at San Francisco State University in 2002, was also important in mapping out some key queer and sexual minority concerns within the field of disability and sexuality studies. Edited books and special issues of journals engaging critical multidisciplinary scholarship on disability and sexuality are becoming more common (McRuer & Mollow, in press; McRuer & Wilkerson, 2003; Mona & Shuttleworth, 2000, 2002; Shuttleworth & Mona, 2000). The issue of disability and sexuality is finally moving into the foreground of concerns within both activist and academic circles. This special issue of Sexuality Research and Social Policy: Journal of NSRC highlights some of the present research trends in this vital area and discusses several social policy concerns. The idea for the special issue emerged from the fifth biennial IASSCS (International

Association for the Study of Sexuality and Culture in Society) Conference, titled Sexual Rights and Moral Panics, held in 2005 at San Francisco State University. Some extraordinary papers on disability and sexuality were presented at that conference, three of which are included in this special issue. These articles vary methodologically, with Fraley, Mona, and Theodore (2007) discussing clinical experiences in their article, “The Sexual Lives of Lesbian, Gay, and Bisexual People With Disabilities: Psychological Perspectives”; Abbott and Burns (2007) reporting on substantive data from qualitative research in their article, “What’s Love Got to Do With It?: Experiences of Lesbian, Gay, and Bisexual People With Intellectual Disabilities in the United Kingdom and Views of the Staff Who Support Them”; and Dawn Reynolds (2007) presenting a case study in her article, “Disability and BDSM: Bob Flanagan and the Case for Sexual Rights.” All three articles offer important suggestions for social policy in their respective areas. The last article, by Margrit Shildrick (2007), “Contested Pleasures: The Sociopolitical Economy of Disability and Sexuality,” takes an expansive and critical view of the field from the perspective of cultural theory. One hopes that these articles will contribute to the goal of increasing the visibility of disability and sexuality as an academic concern and a social justice issue with policy implications. Before introducing the individual articles, this introduction will provide a broad framework for understanding some of the impetus for the recent emergence of disability and sexuality as a cause célèbre by briefly outlining some past and present trends in disability and sexuality

Address correspondence concerning this article to Russell Shuttleworth, Institute of Urban and Regional Development, University of California, Berkeley, 316 Wurster Hall #1870, Berkeley, CA 94720-1870. E-mail: [email protected]

Sexuality Research and Social Policy: Journal of NSRC, Vol. 4, Issue 1, pp. 1–14, electronic ISSN 1553-6610. © 2007 by the National Sexuality Research Center. All rights reserved. Please direct all requests for permissions to photocopy or reproduce article content through the University of California Press’s Rights and Permissions website, http://www.ucpressjournals.com/ reprintInfo.asp. 1

SEXUALITY RESEARCH & SOCIAL POLICY

Journal of NSRC

research and scholarship and by noting several relevant policy debates.

Disability and Sexuality Research: Including Disabled People’s Voices Much has been made of the fact that until about 20 years ago, disability and sexuality research was focused primarily on the loss of sexual function by White heterosexual men who became impaired in early to middle adulthood because of a major physical trauma, often a spinal cord injury (e.g., Chapelle, Durand, & Lacert, 1980; Jackson, 1972; Tsuji, Nakajima, Morimoto, & Nounaka, 1961; Zeitlin, Cottrell, & Lloyd, 1957). Obscured behind the aura of science were racist, masculinist, and heterosexist biases that reflected an obsession with recuperating the lost phallic power of the majority. Such medical and rehabilitative approaches persist today and, although they do include more research on the sexual function of disabled women and a few studies of the sexuality of disabled people from various ethnic backgrounds and cultures, they still focus on the heterosexual majority (e.g., Roop & Sharma, 2005; Sipski, Alexander, & Rosen, 1995). Other research from a rehabilitation perspective may cursorily take account of social and psychological factors in the sexual lives of disabled people but still focus primarily on adjustment issues (e.g., Kreuter, Sullivan, & Siosteen, 1996; Westgren & Levi, 1999). Focusing on sexual functioning or the psychosocial individual can provide important information that may be useful for the person trying to cope with an adverse situation. However, the assumptions implicit in these kinds of approaches—that is, normative function and psychosocial adjustment—are not conducive to developing disability and sexuality as a social justice concern and cannot contribute to critical analysis of the social, cultural, political, psychological, and emotional aspects that are relevant to many of the sexual issues that disabled people face. Historically, the disability rights movement has focused its energy on issues more amenable to social change, such as access to the built environment, education, and employment (Shakespeare, Gillespie-Sells, & Davies, 1996; Shuttleworth & Mona, 2002). By virtually ignoring the sexual issues relevant to disabled people, the disability rights movement thus reinforced the individualized and medicalized view of disability and sexuality that held sway. In the United States, a flurry of attention to disability and sexuality issues occurred in the mid-1970s to early 1980s (e.g., Bullard & Knight, 1981; Geiger & Knight, 1975; Nigro & Sherer, 1981). Some of this work did focus on criticizing asexual social attitudes and

March 2007

prejudices directed at disabled people, educating professionals who worked with this population, and creating disability leadership and an agenda in the field (Jacobson, 2000; Waxman, 2000). However, a broad sociopolitical critique never really took form. When the funding for these kinds of programs dried up in the early 1980s due to the conservative political climate, the issue of disability and sexuality was still perceived by many disabled people as an individual problem and remained virtually unacknowledged in mainstream culture. Disability and sexuality was thus left for the most part under the control of rehabilitation and medical researchers and professionals.1 From the early 1980s through the mid-1990s, a few activists and scholars attempted to put sexuality on the political and research agendas of the disability rights movement and of academic disability studies (Shuttleworth, 2000a). At the beginning of the 1980s, Harlan Hahn (1981) condemned the medical-model bias in research and called on researchers to study the social component of disability and sexuality. At the end of the decade, Carol Gill (1989) had the same concerns regarding the medicalization of disability and sexuality. In 1989, Barbara Waxman and Anne Finger explicitly called for the politicization of sexuality in the disability rights movement. In short, the disability rights movement and academic disability studies were slow to interrogate sexuality as a cultural context and a social field that presents certain impediments for many disabled people. The call for a more sociopolitical approach was not seriously heard until 1996, when Tom Shakespeare, Kath Gillespie-Sells, and Dominic Davies published an account of their landmark research on disability and sexuality in the United Kingdom. Theirs was the first systematic study that prioritized the relatively simple goal of discovering what disabled people think and feel about their sexuality, and this research went a long way toward putting this subject at least on the periphery of the disability rights agenda (Shuttleworth, 2000a). These researchers chose to provide minimal theoretical analysis, only briefly noting the social model of disability and the notion of sexual citizenship. In retrospect, this choice was an important participatory move to shake off the oppressiveness of functionally oriented approaches and prioritize the voices of disabled people. This participatory trend continues with several relatively recent edited volumes of personal reflections on sexuality from

1 To confirm this assertion, one need only look at the table of contents for the journal Sexuality and Disability during these years.

Vol. 4, No. 1

2


Journal of NSRC

disabled people (e.g., Brownworth & Raffo, 1999; Guter & Killacky, 2004).

Engaging Sexuality Studies At a session on sexual inequality at the annual American Anthropological Association meeting in 2001, I argued that inclusion of the intersection of disability and sexuality as a legitimate research topic in sexuality studies and as a legitimate concern of the larger sexual rights movement will, I think, push the envelope in constructionist theorizing on sexuality and, indeed, in how we approach the issue of sexual rights. (Shuttleworth, 2006, p. 178)2 To make my point, I brought up the significant ethical quandaries surrounding issues such as facilitated sex and the sexuality of people with intellectual impairments. I was implying that if sexuality studies and the sexual rights movement embraced disability, then ethically and analytically contending with these kinds of issues would impel a transformation in researchers’ understanding of sexuality and how they frame the sexual subject.3 Although disability and sexuality issues have gained a certain amount of credibility among sexual rights activists and in the field of sexuality studies since I made my statement, its implications for theory, social justice, and social policy are only beginning to be construed. With the ascendance of the HIV/AIDS crisis during the 1980s, sexual health increasingly became one of the organizing concepts used in the study of sexuality. However, HIV/AIDS research was slow to include disabled people as part of its focus. Only within the last few years 2 The original paper was titled “Disabled Men—Negotiating Sexual Intimacy in Disability Culture.” A revised version (Shuttleworth, 2006) with the title “Disability and Sexuality: Toward a Constructionist Focus on Access and the Inclusion of Disabled People in the Sexual Rights Movement” has recently been published in Sexuality Inequalities and Social Justice, edited by Niels Teunis and Gilbert Herdt (2006). 3 I am alluding here to the introduction to an important volume edited by Richard Parker, Regina Maria Barbosa, and Peter Aggleton (2000) that mapped out important new concerns and recent developments in sexuality research, most notably a new political framing of issues in terms of their local and global import. The editors argued that what prompted this new political framing of sexuality was the growing feminist and gay and lesbian movements’ intersection with the growing international concern with overpopulation, reproductive health, and the HIV/AIDS pandemic. What I was suggesting was that the inclusion of the sexuality of disabled people in the sexual rights and sexuality studies equation would challenge this new political framing as perhaps not being radical enough, as well as open up innovative directions in research.

March 2007

have the increased rates of HIV and AIDS among disabled people, especially within developing societies, been recognized as a legitimate public health and research concern (e.g., Banda, 2005; Groce, 2003; Wazakili, Mpofu, & Devlieger, 2006). Another significant problem with sexual health research is that it primarily focuses on disease and dysfunction, not on sexual health as a question of social justice (Parker, 1997). Thus, such research is conceptually limited and cannot adequately account for the effects of disabling sociocultural contexts on the sexual well-being of people with chronic illness or impairments. Whereas the constructionist arm of sexuality studies has made important contributions to fleshing out the sociocultural contexts associated with a higher prevalence of HIV/AIDS (Gagnon & Parker, 1995; Parker, Barbosa, & Aggleton, 2000), the most conceptually sophisticated and politically motivated constructionist work during the past 15 years has been concerned either explicitly or implicitly with the oppression of gender and sexual minorities and the constitution of gender and sexual identities (e.g., Butler, 1990, 1997, 2004; Halperin, 1990; Stanton, 1992; Stein, 1992). This scholarship has challenged existing heteronormative frameworks and reimagined some of the paramount issues of feminism and the gay, lesbian, bisexual, and transgender movement; it has had farreaching influence across many human science disciplines. However, in this scholarship, normatively functioning bodies are usually assumed. Furthermore, such scholarship takes for granted access to basic modes of sexual expression (e.g., masturbation); to those contexts in which gender and sexual identity (heteronormative or not) begin to take shape and are iteratively performed (e.g., everyday childhood and adolescent peer interaction); and to the contexts and situations in which sexual negotiations take place (e.g., dating rituals) and thus does not problematize these factors as theoretical issues to conceptualize or as empirical issues to investigate. Yet, it may be difficult for some disabled people to access one or more of these kinds of contexts. In fact, sexual access is one of the most important areas of concern for many moderate to significantly impaired disabled people.4 Recently, however, the field of sexuality studies is broadening its understanding and beginning to include the sexual issues of disabled people as a social justice concern within a more broadly

4 The observation that the field of constructionist sexuality studies has not problematized sexual access because of its historical and political ties to certain social categories of people and conceptual tendencies is an extension of one I have made in several other presentations and publications (see Shuttleworth, 2001a, 2006, in press; Shuttleworth & Mona, 2002).

Vol. 4, No. 1

3


Journal of NSRC

construed analysis of sexual inequalities (Herdt, 2001; Shuttleworth, 2001a, 2006; Teunis & Herdt, 2006). This change bodes well, both politically and academically, for a social justice and sexual rights alliance that includes disabled people, feminists, and gender and sexual minorities—individuals whose personhood and sexuality is often devalued within Western societies.

Disability, Sexuality, and Social Policy The inclusion of disabled people’s voices in research on disability and sexuality, along with an academic and political alliance with sexual and gender minorities and their allies, will, one hopes, lead to innovative approaches for tackling some of the difficult policy issues in sexual politics that confront us in the twenty-first century. However, the development of effective social policies that will address disabled people’s sexual issues is a daunting challenge. The transgression of normative notions of embodiment and function—normative in the sense of being able to walk, talk verbally, perceive visually, hear audibly, cognize, or behave in a so-called rational way—affects not only how disabled people are viewed as persons in society but also how they are constructed as sexual subjects, which is often as asexual or hypersexual. The barriers to sexual expression, sexual well-being, and sexual relationships that many disabled people confront can often be traced to the symbolic meanings and values that are called up from the cultural imaginary by these transgressions of normative embodiment (Shuttleworth, 2000a, 2001b, 2006). For example, autonomy is a primary value in the United States and sexuality “as a reflexive project of the self...relies on U.S. society’s rhetoric of autonomy and self-sufficiency” (Shuttleworth, 2000a, p. 345). Thus, those people who need assistance with sundry personal care tasks because of their particular impairment(s) and who also may need help accomplishing sexuality-related tasks can be compromised in terms of how others construct them as sexual subjects and in their own sense of sexual embodiment and sexual self-esteem.5 They are often infantilized and accorded the sexual status reserved for children—that is, an asexual one (Mona & Gardos, 2000; Sakellariou, 2006; Shakespeare et al., 1996; Shuttleworth).

5 For research on disabled people’s sexual self-esteem, see, for example, DeHaan and Wallander (1988); Fitting, Salisbury, Davis, and Maydin (1988); Mona, Gardos, and Brown (1994); Potgieter and Khan (2005); and Snell and Papini (1989). For research on disabled people’s body images, see, for example, Ben-Tovim and Walker (1995); Mayer and Eisenberg (1988); Potgieter and Khan; and Taleporos and McCabe (2001, 2002).

March 2007

Another sociocultural factor affecting how the sexuality of disabled people is constructed is the apparent distinction Western societies make between private and public. Many social justice–oriented researchers perceive this distinction as a major factor in the discrimination disabled people experience (e.g., Shakespeare et al., 1996; Wade, 2002). Wade argued, “Without the recognition of private lives for individuals with significant disabilities, the fight for access and integration may continue, but people with significant disabilities will remain in a separate and unequal status among the nondisabled population” (p. 11). Margrit Shildrick (2004b, 2007) construes the issue of public and private differently. Shildrick perceives public versus private as a false distinction and, following Foucault (1979a, 1979b), notes that choice and agency in sexual matters are not really under one’s personal control—and, in fact, are shot through with normative prescriptions wrought by a governmentality that works simultaneously through institutional and personally directed means. She argues that the disavowal or silencing of the sexuality of disabled people is no less an effect of governmentality than the regulation of the sexuality of those whose bodies are closer to the normative standard. Disabled people are actively constructed as nonsexual because they are a threat to both the social body and heteronormative sexuality (Shildrick, 2004b, 2007). Following the findings of Earle’s (1999) research on attitudes of disabled people and their personal assistants toward facilitated sex, Shildrick (2004b, 2007) perceives this disavowal of disabled sex less as an issue of private versus public and more as the separation of needs from desires in our cultural imaginary. The fact that personal care schemes have not publicly condoned the use of provided funds for clients’ sexual facilitation is patently convenient and in line with the notion that social policy deals with needs, not desires. By failing to acknowledge the sexual desires of disabled people, social policy relating to personal care assistance for disabled people is just another manifestation of the silencing of their sexuality.6 I would add the point that this construction of disabled people as nonsexual in personal assistance schemes is intimately tied to the cultural value of autonomy in performing sexually intimacy, whether it is with others or with ourselves. Personal assistance may be fine for meeting people’s needs, but autonomy functions as a cultural imperative for fulfilling desires. Concerns such as whether a person with an intellectual impairment is deemed competent enough to

6 The image of silence has a long-standing history in discussions of the sexuality of disabled people (e.g., Mairs, 1996; Rousso, 1993).

Vol. 4, No. 1

4


Journal of NSRC

engage in sexual relationships and the aforementioned use of personal assistance services by disabled people to help facilitate their sexual expression or sexual encounters, as well as their use of sexual surrogates or sex workers, are thus filtered through a public perception that invests these issues with normative understandings of embodiment, the public-private divide, the difference between needs and desires, and the self as an autonomous agent. The result is that even important disability legislation such as the Americans With Disabilities Act (1990) fails to mention sexuality other than in terms of reproductive rights. Examination of facilitated sex provides perhaps the best example of how the sexuality of disabled people often registers minimally on the social policy radar. Facilitated sex is defined as assistance in performing a sexual activity supplied by someone who provides personal care to a client, increasingly referred to as personal assistance services (PAS). This assistance could include positioning the disabled person for masturbation or for sex with a partner, helping her or him undress, assisting with stimulation for the disabled person or for that person’s disabled sexual partner, transferring the person to a bed or couch, transporting her or him to a partner’s residence, purchasing condoms, or providing reminders about using birth control (Mona, 2003; Tepper, 2000). Other possible tasks not mentioned by Mona are ones that I provided for a man as his personal assistant: facilitating his communication in strip clubs and also soliciting the services of sex workers for him (Shuttleworth 2000a, 2001b, 2006). To date, the United States still has no nationally based PAS program and services vary from state to state (Mona). The pragmatic and ethical issues associated with facilitated sex abound in those situations where the disabled person resides in a familial, an institutional, or a quasi-institutional setting such as a group home, or when s/he has no input into the decision of who provides PAS. However, even for those disabled people living independently in the community who control this decision and directly pay their personal assistants, there are myriad concerns. The most obvious is that there are no public policy guidelines in place to govern practices involving facilitated sex; negotiating this service with a personal assistant is left entirely up to the disabled person. But some disabled people who may desire this service might be embarrassed or reluctant to broach the subject of sexual facilitation with their personal assistants because of the aforementioned high cultural value placed on privacy and autonomy in sexual life. Yet to raise facilitated sex as a social policy issue is a risk. Because facilitated sex does indeed transgress the

March 2007

normative view of sex as an ostensibly private affair and an autonomous project, personal assistants who help an individual with sexual activity risk being viewed as sexual participants and, because payment is involved, may be legally liable. Mona (2003) noted such legal ramifications in her discussion of PAS in the United States, and Shildrick (2007) observes similar legal concerns in her discussion of facilitated sex in the United Kingdom. Is it, then, better to leave this issue beneath the policy radar so that those disabled people who are bold and persuasive enough can negotiate assistance privately with their personal assistants? Or should this issue be brought to the attention of policymakers with the possibility that conservative restrictions will be put in place that reflect mainstream culture’s view of what constitutes a moral sexual encounter? To date, this important subject and its policy implications have received virtually no attention within research in the field (however, see Earle, 1999). Another important issue that demonstrates the reluctance of public policy to deal effectively with disabled people’s sexuality is the lack of relevant sex education within school and community settings for disabled adolescents and young adults (Mona & Gardos, 2000; Shakespeare et al., 1996; Shuttleworth, 2000a; Wade, 2002). In the United States, this issue must of course be viewed in the context of the general cultural conservatism that currently pervades sex education (Fields & Hirschman, 2003; McGrath, 2003). With the general cultural silencing of their sexuality, it is not surprising that disability-relevant sex education for disabled people is rarely considered a primary concern. The repercussions of limited sex education for adolescents and young adults with a wide range of physical and sensory impairments are many, not least of which is that they may reach adulthood emotionally, psychologically, and socially ill equipped to negotiate sexual intimacy with others (Mona & Gardos; Olkin, 1999; Rousso, 1993; Shuttleworth). Disabled people are also often sociosexually isolated during adolescence, which, combined with minimal disability-relevant sex education, can result in the repression of their sexual feelings (Shuttleworth). Therefore, school districts need to develop policies that provide comprehensive disability and sexuality education and counseling to disabled adolescents (Shakespeare et al.). More disability peer-support programs for sexuality issues also need to be developed so that adolescents and young adults can benefit from the experience of older disabled people (Sakellariou, 2006; Shuttleworth). There is especially widespread acknowledgment of the need for sexuality education and training for people with intellectual impairments (Hingsburger &

Vol. 4, No. 1

5


Journal of NSRC

Melberg-Schwier, 2000; Stinson, Christian, & Dotson, 2002). Although there is no lack of curricula that have been developed for this population (e.g., McDermott, Martin, Weinrich, & Kelly, 1999), a standard policy has yet to be implemented in the United States (Wade, 2002; Wolfe & Blanchett, 2000). Wade argued that “without guiding policies, little can be done to ensure that an individual’s rights to education and training in sexuality will be realized” (p. 10). Research has identified that disabled people, especially disabled girls and women, are at a high risk for sexual abuse (Nosek, 1996; Nosek, Foley, Hughes, & Howland, 2001; Schaller & Fieberg, 1998; Sobsey & Doe, 1991) and lack of adequate sex education and training for people with intellectual impairments has been identified as a factor that puts this population at an even higher risk for sexual abuse (Mona & Gardos, 2000). Wade concluded that although the right to sexual expression for people with intellectual impairments has been increasingly acknowledged, policy development has lagged because of the conflict between this right and the urge to protect those considered vulnerable to abuse. She suggested that what is needed is a policy that speaks to the concerns of all constituents but keeps in the foreground the individual’s freedom of sexual expression; mandatory for such a policy is the notion of dignity of risk—that is, recognizing that there may be potential risks for people with intellectual impairments, but nevertheless granting them the right to pursue sexual relationships. It is impossible to do justice to all of the sexual issues that are emerging as important for disabled people, but they include the following: access for disabled women to quality reproductive health care; the use of sexual surrogates and sex workers; poor sexual self-esteem and body image; lack of positive media images of disability and sexuality; negative and nonsupportive staff attitudes toward the sexuality of disabled people; difficulties in accessing interpersonal contexts in which sexual relationships with others are usually cultivated; disability fetishism; and the multiple oppressions that ethnic and sexual minority disabled persons face. As a prelude to discussing the articles in this special issue of Sexuality Research and Social Policy: Journal of NSRC, I argue for the development of sophisticated conceptual frameworks that can critically interrogate the constituent aspects of the range of disability and sexuality concerns, and I go on to outline one such approach.

Accessing Disability and Sexuality Studies The history of medicalized, apolitical, and individual biases in disability and sexuality research is being superseded

March 2007

by approaches that take account of disabled people’s voices and the sociocultural contexts in which they live their everyday lives. Systematic social science research is paramount for providing important input to current policy debates on particular topics such as sexual facilitation or sex education relevant for disabled people. Research and scholarship on disability and sexuality that promotes development along more theoretical lines is also necessary and may eventually change the terms of current policy debates. This theorizing should include a critical interrogation of the salient social, cultural, representational, historical, political, psychological, and emotional aspects that effectively constitute the sexual oppression of disabled people (e.g., Block, 1998, 2000; Guldin, 1999, 2000; Kafer, 2004; McRuer & Wilkerson, 2003; Shildrick, 2004a, 2004b, 2005; Shuttleworth, 2000a, 2000b, 2001b, 2006, in press; Shuttleworth & Mona, 2002; Tremain, 2000; Wentzell, 2006; Wilkerson, 2002). For example, several years ago, my colleague Linda Mona and I (Shuttleworth & Mona, 2002; also see Grossman, Shuttleworth, & Prinz, 2004; Shuttleworth, 2005, 2006) suggested using a sexual access approach to interrogate the oppressive structures that can restrict the sexual lives of many disabled people. We noted that sociocultural contexts and supports that acknowledge, nurture, and promote the sexuality of disabled people are in short supply. The idea of sexual access proposes that the sexuality of disabled people is situated within a cultural and sociostructural framework of inclusion-exclusion. Thus, sociocultural analysis explores not only sexual interactions but also the full range of aspects of this framework in order to discern the degree to which they work toward or against the sexual well-being, sexual expression, gender and sexual identity formation and expression, and sexual opportunities of disabled people. Depending on the particular situation of the disabled person, relevant aspects of this framework may include, among others, access to the emotional, psychological, social, and cultural supports that sustain a positive sense of one’s sexual self; physical access to environments and social contexts in which sexual interactions may occur; monetary resources for accessing such contexts; access to personal assistance services; access to transportation; communication access; access to gender and sexual identity resources; and access to positive cultural meanings of disability intersecting with perceptions of sexual desiring and desirability (Shuttleworth, 2005, 2006; Shuttleworth & Mona). One way by which cultural support for disabled people’s sexuality could be improved is through a more positive representation of disability and sexuality in film and other media. Media imagery is crucially important in

Vol. 4, No. 1

6


Journal of NSRC

shaping people’s discriminations and prejudices (Ablon, 1981). As is well known, the stereotypical portrayal of disabled people in the media is either as asexual or, in some cases, as hypersexual (Block, 2000; Hahn, 1988; Harris, 2002; Longmore, 1987). Although some progress has been made—the film Dance Me to My Song (de Heer & Rose, 1998) is one example—there is much room for improvement. Political pressure should be exerted on those who produce grossly distorted images of disabled people and on the relevant media outlets that proffer such images for public consumption. More positive representation of disability and sexuality in the media would likely result in a more positive identification and heightened sexual self-esteem for disabled people. Such sexual representation of disabled people might also result in many nondisabled people perceiving them in an enhanced sexual light. In this example, psychological, social, and cultural supports synergistically reinforce each other to promote the sexual well-being of disabled people, as well as opportunities for expressing their sexuality and making sexual contacts (Shuttleworth, 2005; Shuttleworth & Mona, 2002). Showing how sexual subjectivity is constructed to exclude some people in a society should be only one goal of research. It is also important to note and appreciate the ways in which many disabled people manage, in the face of multiple barriers, to develop a sense of sexual wellbeing and sexual relationality through normative means. In addition, using sexual access as a heuristic frame need not imply that hegemonic notions of sexual expression, heteronormatively construed gender and sexual identities, typical avenues of sexual negotiation and sexual relationality, and traditional sexual practices are the only ways in which sexual well-being accrues. Equally important to describe are how some disabled people express themselves sexually against restrictive normative notions of bodily functioning and modes of sexual relationality (e.g., by becoming involved with their personal assistants) and how some disabled people in fact carve out creative kinds of sexual relationships and alternative sexual practices through incorporating their particular carnality— for instance, the bodily functioning of someone with significant cerebral palsy—into their resistance tactics (Shuttleworth, 2000a, 2002, 2006, in press). Dawn Reynolds (2007), in her contribution to this special issue, describes the exemplary case of performance artist Bob Flanagan. Flanagan had cystic fibrosis yet managed to take control of the pain that often accompanies this disease by incorporating it into his sexual expression as part of his alternative sexual lifestyle and performance art. The cultivation of alternative sexualities by some disabled

March 2007

people has important advocacy and policy implications: Strategies should be developed to help effectively promote the acceptance of such alternative sexualities in the face of likely public resistance. This emphasis on expanding the narrow strictures of current hegemonic notions of sexuality is where the concerns of disabled people clearly converge with those of gender and sexual minorities in the struggle for social justice and sexual rights.

Introducing the Articles in the Special Issue Sexual access is not the only conceptual frame that can be useful to scholarship and research in disability and sexuality—and some disability issues are clearly more amenable to consideration through the lens of access than others. When used appropriately, however, an access perspective opens up some of the sexual issues relevant to disabled people for critical interrogation as social justice concerns.7 All four articles within this special issue of Sexuality Research and Social Policy: Journal of NSRC deal in one way or another with sexual access concerns, even if, as in the case of Margrit Shildrick’s (2007) article, it is to problematize the social justice implications of such an approach. These articles lend important empirical, clinical, and theoretical weight to the fact that sexual restriction and exclusion of disabled people come in various guises and are not just about access to normative sexuality—meaning both heteronormative sexuality and a sexuality constructed on the model of nonimpaired bodies. Fraley, Mona, and Theodore’s (2007) article, “The Sexual Lives of Lesbian, Gay, and Bisexual People With Disabilities: Psychological Perspectives,” is directly concerned with the sexual expression of this population because sexual access can be further compounded due to double discrimination, as a result of being disabled and of being lesbian, gay, or bisexual. Nonetheless, minimal research has focused on sexual expression for disabled lesbian, gay, and bisexual (LGB) people. Due in part to this lack of empirical research, mental health providers have not addressed many of the sexual issues of this population. Fraley et al. begin the process of bringing into focus not only some of the sexual concerns and barriers that disabled LGB persons face but also the clinical and social policy implications of these issues. The authors speak to the crux of the issue: Because they belong to two minority groups,

7 Access-exclusion in a sociopolitical sense is a transposing of an existential, felt sense of access-obstruction to the objects of our intentions. That is, felt obstruction to assuming a positive social status or accessing a particular social context or activity is perceived as a social exclusion. Obviously this transposition can occur only in societies in which there is some sense of social justice (Shuttleworth, 2006).

Vol. 4, No. 1

7


Journal of NSRC

disabled LGB persons confront a greater number of environmental and social barriers to their sexual expression than either disabled straight people or nondisabled LGB people. The authors discuss important strategies that disabled LGB people can cultivate to assist their sexual expression and negotiation of sexual and romantic relationships. Because of their double minority status, strategies as well as barriers related to expressing sexuality can be more complex for this population. For example, the question of facilitated sex takes on added dimensions for disabled LGB persons. When choosing a personal assistant for this service, Fraley et al. note that disabled LGB people may be reluctant to disclose their sexual orientation for fear of judgment, prejudice, or even the loss of their PAS. Fraley et al.’s (2007) article is a significant first step in providing a fund of clinical experience and therapeutic advice that those working with disabled LGB people can draw from. They also make a number of important policy suggestions, including the need for increasing awareness of disability access issues in the LGB community and of LGB access and visibility issues in the disability community. The authors raise the particularly pertinent concern that because minimal research has been conducted with this population, funding and policies that affect them are virtually nonexistent. They argue that gathering basic statistical data on this population is a prerequisite for the development of effective social policies. To obtain this demographic information, the authors suggest including a measure of sexual orientation within disability-specific research and a measure of impairment within LGB research. They also argue for addressing a variety of specific research topics, some of which have important policy implications: understanding the use of PAS for facilitated sex; discerning the frequency and effects of the disclosure of sexual orientation to personal assistants; studying the use of sexual surrogates, sex workers, and sexual aides; and examining the sexual satisfaction of disabled LGB persons. Finally, the authors point to the medium of live performance, which could be used effectively to raise public awareness of some of the unique sexual issues affecting disabled LGB people. Currently, there is a movement among some advocates, researchers, program staff, and policymakers to address the barriers to sexual expression and sexual relationships for people with intellectual impairments in Western societies. These concerned parties recognize that the sexuality of people with intellectual impairments has not been well served by a range of social services and programs. Participatory and ethnographic research is proving to be important in the effort to address these barriers (e.g., Johnson, Hillier, Harrison, & Frawley, 2001;

March 2007

Lofgren-Martenson, 2004), an important result being the development of groups and workshops for providers, family, and people with intellectual impairments themselves (e.g., Allen, 2003; Johnson et al., 2001). An area especially lacking is the provision of emotional and pragmatic support for people with intellectual impairments from staff, although a few programs are developing sexual expression guidelines for staff so they can better provide this support (e.g., IHC New Zealand Incorporated, 2006). However, even in a climate of increasing awareness of these kinds of issues, implementation of progressive policies proves difficult in practice. According to Fraley et al.’s (2007) double discrimination and multiple barriers argument, seeking alternatives to heteronormative sexuality will result in a further lack of support for disabled people and their sexuality. This result is exactly what David Abbott and Jan Burns (2007) found in their research. Despite a changing social policy environment in the United Kingdom that recognizes the necessity for increased attention to relationship needs and sex education for people with intellectual impairments, Abbott and Burns’s article, “What’s Love Got to Do With It?: Experiences of Lesbian, Gay, and Bisexual People With Intellectual Disabilities in the United Kingdom and Views of the Staff Who Support Them,” reveals a host of barriers and lack of support for the sexual expression of this population. Abbott and Burns (2007) interviewed staff in a range of services, such as housing associations, advocacy groups, and day centers, as well as people with intellectual impairments who use these services and identify as lesbian, gay, or bisexual. Findings are especially discouraging given that the services and programs selected by the researchers were those with supposedly best practices. Study participants with intellectual disabilities talked about love and the importance of relationships, but most of them reported homophobic reactions and negative views toward their sexuality by at least some staff members. Disabled participants also expressed the need for a mentor to provide emotional support in their struggle for sexual expression and in gaining access to gay and lesbian gathering places in the community. However, their dependence on staff for services was an inhibiting factor and made both coming out to staff and asking for sexual support difficult. Furthermore, disabled participants with intellectual impairments talked about the loneliness and depression that stemmed from lack of support for their sexuality. For their part, staff reported a lack of training in sex, sexuality, and relationships, as well as a lack of experience in supporting LGB clients. A greater number of staff said they would be more supportive of heterosexual

Vol. 4, No. 1

8


Journal of NSRC

relationships versus same-sex relationships (76% to 41%). They also reported a passive attitude and waited either for a crisis to develop or—perhaps in the name of autonomy— until a client approached them with an issue. To their detriment, the people with intellectual disabilities overly took into account the often negative views of both those who provide them with personal care and their parents. Abbott and Burns (2007) concluded that it is not just a question of providing sex education: Staff must provide more proactive community support for disabled LGB people so that they can socially network, fall in love, and experience intimate relationships with others. These researchers also point to the larger community in their analysis, highlighting the need for staff to assist in developing specific support networks in the community for LGB people with intellectual impairments. Abbott and Burns’s findings clearly show how access to opportunities for sexual expression may be limited given the restrictions and minimal support operating within these programs and services (also see Hamilton, 2002; Wade, 2002).8 When inhibiting restrictions and lack of support are the norm, the process of gender and sexual identity formation and the development of a sense of sexual agency become fraught with difficulty (Shuttleworth, 2006). As long as vestiges of homophobia and cultural notions of public versus private, needs versus desires, and the rhetoric of autonomy are reflected in sex education and staff attitudes, such attitudes will likely continue to translate into lack of proactive support for the sexuality of people with intellectual impairments, especially for those who are gay, lesbian, or bisexual. In stark contrast to the clinical and research orientations of the first two articles, Dawn Reynolds’s (2007) article, “Disability and BDSM: Bob Flanagan and the Case for Sexual Rights,” is a case study of the infamous disabled artist, Bob Flanagan, who practiced a bondagedominance-sadism-masochism (BDSM) lifestyle. Reynolds argues that Flanagan’s example demonstrates a mode of empowerment and alternative sexuality that some 8 Carol Hamilton (2002) conducted research in New Zealand among staff who work for a human services organization and who provide services for people with intellectual impairments and found that access to successful instances of sexual expression for intellectually impaired people is currently available only for those who are articulate enough and persistent enough to keep trying until they succeed. Thus, Hamilton asks the question, also relevant to Abbott and Burns’s research, Beneath the rhetoric of empowerment and inclusion that surrounds this group, is there a deeper recognition that access to an ordinary sexual life for all but a select few of those with an intellectual disability, is to remain firmly off limits? (p. 56)

March 2007

disabled people might benefit from. While welcoming the current movement to interrogate sexual access for various groups of disabled people, such as people with developmental impairments and disabled queers, Reynolds nevertheless criticizes the field of disability and sexuality studies, as well as those who offer sexual resources for disabled people, for not including discussion of alternative sexual practices such as BDSM. She contends that some disabled people, especially those who experience pain in association with their impairments, might welcome this lifestyle as an alternative sexual option from heteronormative sexuality—by which she means traditional vanilla sexual relations and practices. She argues that the openness of the BDSM community to all kinds of bodies might provide an eroticized context for disabled people who may not be so easily welcomed into heteronormative sexual settings. Performance artist Flanagan, now deceased, had cystic fibrosis, a progressive disease that often includes impairments and chronic pain. From an early age, Flanagan cultivated a reflexivity that allowed him to develop an eroticized relationship with his pain. Later, he incorporated this relationship into his BDSM lifestyle and into his public performances. Reynolds (2007) provides riveting descriptions and important analysis of Flanagan’s BDSM practices and his erotic performances, showing how he inverted the typical experience of pain and the traditional medical authority that attempts to cure or manage it. According to Reynolds, Flanagan showed how using BDSM practices might assist in transforming the relationship some disabled people have with their own impairments or their pain from negativity into an erotically charged agency that gives them some measure of control over their corporeal situation. Reynolds’s (2007) article provides an important comment on ways in which diversifying sexual expression could be advanced in the social policy arena. The national kink community could take steps to establish resources that focus on disability and sexuality and also join the public policy fray. Reynolds also envisions a future extension of the Americans With Disabilities Act (1990) into sexualaccess concerns and sexual rights, changes that would then perhaps open up discussion on alternative sexualities. To help effect this change, she urges that those who study policy, as well as collectives of activist groups, must begin acknowledging the right to sexual expression for disabled people and include this issue in their advocacy efforts and critique of policies relevant to sexuality in the United States. Reynolds also notes that the two oldest Centers for Independent Living (CILs) for disabled people, which should be on the front lines of providing sexual resources,

Vol. 4, No. 1

9


Journal of NSRC

do not currently provide sexuality materials or support groups for members of the disability community. 9 Reynolds’s article concludes with an important section on obstacles to sexual change of the kind she envisions. Reynolds’s work is admirable in calling attention to a (so far) peripheral practice, BDSM, in disability and sexuality discourse that may provide a key to enhancing the sexual well-being of some disabled people, especially those who may desire to transform their relationship with pain. Margrit Shildrick’s (2007) article, “Contested Pleasures: The Sociopolitical Economy of Disability and Sexuality,” is a provocative closing essay to this special issue of Sexuality Research and Social Policy: Journal of NSRC, and thus I believe it warrants a more critical engagement. Whereas the first three articles make important policy suggestions, Shildrick, using a Foucauldian (1979a, 1979b) perspective, warns that addressing the social, legal, and environmental aspects of disability and sexuality will have unforeseen consequences that social policy analysts have not considered. Shildrick also problematizes both the grassroots movement for sexual rights for disabled people and the scholarship and research that allies itself with this movement. I cannot do justice to her multifaceted argument here, but I find her thinking useful in revealing the discursive parameters that are built into the motivations and efforts that seek to resolve a host of disability and sexuality issues. A primary point in her article is that making the sexuality of disabled people more publicly visible and thus open to social policy analysis and intervention will subject their sexual issues to a normalizing gaze with its accompanying surveillance and regulation. In making

9 I would add that the philosophy of Centers for Independent Living (CILs) simply reflects the disability rights movement’s traditional avoidance of sexual rights. CILs have become much less advocacy oriented (as they were historically) and now often simply provide various services to the disability community—generally the less controversial and more publicly accepted services such as assistance with finding housing, employment, or personal care. In my experience with CILs, they may offer sexual resources and support groups sometimes—usually when a particular staff person is interested in this issue—but when that person moves on, these resources often lapse. However, it may be only a matter of time before Reynolds’s (2007) suggestions begin to take hold because the disability rights movement is now beginning to put sexuality on its agenda. This change will likely have a slow ripple effect across disability organizations and centers nationwide, even those whose main goal is to provide services. Nonetheless, making inroads on the heteronormative agenda and incorporating acknowledgment of alternative sexual expressions such as bondage-discipline-sadismmasochism within social policies relating to disability and sexuality will prove challenging.

March 2007

her argument, Shildrick (2007) transposes Butler’s (2004) recent analysis of the normalizing consequences of the movement for gay and lesbian civil unions and marriage onto the subject of disability and sexuality. Butler argued that one price of the incorporation of gay couples into the heteronormative institution of marriage will be the projection of an even more negative judgment and exclusion onto those whose sociosexual arrangements continue to remain outside this institution. Similarly, Shildrick argues that the inclusion of some of the sexual concerns of disabled people within normative sexuality will necessarily result in a more extreme othering of those aspects of sexuality that still fall outside the newly redrawn normative parameters. Shildrick’s (2007) focus on the othering that can accompany normalization minimizes the different stakes that are often involved for diverse social categories of people. In what way is the deprivation for a gay or lesbian couple excluded by law from the institution of marriage equivalent to that of a significantly disabled person who cannot masturbate or engage in sexual activity because of bodily and social restrictions? The desire for gay marriage moves beyond the simple expression of sexuality into the arena of state-endorsed, public recognition of a relationship. I am not contesting the significance of both marriage and simple sexual expression for the parties involved—and that normalization will cast its shadow on both kinds of situations—but to flatten them onto one plane of equivalence seems to discount the fact that some disabled people are struggling to simply express themselves sexually, let alone to make a public commitment to someone they love. Shildrick (2007) further observes that the experience of gay and lesbian politics and the insights of queer theory have shown how situating analysis strictly within the terms of identity, equality, and sexual rights is a normalizing move that produces conformity. Therefore, extending the definition of who is included as a sexual citizen in heteronormative society—in this case, disabled people—also does not necessarily challenge the kinds of sexual relations and practices that are permitted. Shildrick grants that social, legal, and environmental adaptations for some disabled people in the area of sexuality may alleviate their immediate material circumstances, but with the price of not questioning and, in fact, actually reinforcing mainstream sociosexual values. A possible move forward might lie with an ethics of the body. As she puts it, disabled people’s “altered phenomenology of the body...inevitably figure[s] new forms of sexuality and self-identity that cannot be simply absorbed into or reclaimed to normative

Vol. 4, No. 1

10


Journal of NSRC

standards” (p. 64). Thus, it is their embodied experience of the world that has led some disabled people to cultivate alternative and creative sexualities, some of which may begin to challenge our sexual imaginary. Shildrick’s (2007) concluding point is important— she notes that we must somehow maintain a tension between, on the one hand, the pull toward social justice and sexual rights for disabled people and, on the other hand, the pull toward contesting the way that our sexual imaginary is currently conceived. Her article is a sobering call for activists, scholars, and social policy analysts alike to recognize the sexual disenfranchisement that many people experience, yet not be satisfied simply with their inclusion as sexual citizens. I would add that perhaps, too, we should recognize the inherent limitations of our present understanding to adequately deal with the problematic of exclusion while contesting the normative parameters of inclusion. In his work, social philosopher Cornelius Castoriadis (1991) called for a continuing critique of our orienting principles and the terms of our engagement, expressed aptly in his consideration of the notion of equality, which is relevant to the current discussion. Castoriadis observed that equality is not an answer, a solution which could be given once and for all to the question of the institution of society. It is a signification, an idea, a well which opens up questions and which does not go without question. (p. 139) Recasting the tension Shildrick (2007) identifies into a mode of self-reflexive social action, researchers must remain open to a continual critical evaluation of what equality and, more precisely, equal opportunity may mean in terms of gender, sexual, and bodily diversity, as well as sexual relationality and sexual practices—but not allow the perceived tendencies of normalization to result in immobilization and deter a commitment to those who within our current understanding are experiencing the effects of various kinds of sociosexual oppression, constraints, and exclusion.

References Abbott, D., & Burns, J. (2007). What’s love got to do with it?: Experiences of lesbian, gay, and bisexual people with intellectual disabilities in the United Kingdom and views of the staff who support them. Sexuality Research and Social Policy: Journal of NSRC, 4(1), 27–29. Ablon, J. (1981). Stigmatized health conditions. Social Science and Medicine, 15b, 5–9. Allen, J. (2003). Gay, lesbian, bisexual, and transgender people with developmental disabilities and mental

March 2007

retardation: Stories of the Rainbow Support Group. Binghamton, NY: Harrington Park Press. Americans With Disabilities Act. U.S.C. § 12101 (1990). Retrieved August 21, 2006, from http://www.ada.gov/ pubs/ada.htm Banda, I. (2005). Disability, poverty, and HIV/AIDS. Retrieved May 15, 2006, from Disabled Peoples’ International website: http://www.dpi.org/en/ resources/articles/06-23-04_hivaids.htm Ben-Tovim, D., & Walker, K. (1995). Body image, disfigurement and disability. Journal of Psychosomatic Research, 39, 283–291. Block, P. (1998, November). Defective and defenselessness: Cognitive disability, sexuality, and social identity. Paper presented at the 97th American Anthropological Association Meeting, Philadelphia, PA. Block, P. (2000). Sexuality, fertility and danger: Twentieth century images of women with cognitive disabilities. Sexuality and Disability, 18, 239–254. Brownworth, V. A., & Raffo, S. (1999). Restricted access: Lesbians on disability. Seattle, WA: Seal Press. Bullard, D., & Knight, S. (1981). Sexuality and physical disability: Personal perspectives. St. Louis, MO: C. V. Mosby. Butler, J. (1990). Gender trouble: Feminism and the subversion of identity. New York: Routledge. Butler, J. (1997). Performative acts and gender constitution: An essay in phenomenology and feminist theory. In K. Conboy, N. Medina, & S. Stanbury (Eds.), Writing on the body: Female embodiment and feminist theory (pp. 401–417). New York: Columbia University Press. Butler, J. (2004). Undoing gender. New York: Routledge. Castoriadis, C. (1991). Philosophy, politics, autonomy. New York: Oxford University Press. Chapelle, P., Durand, J., & Lacert, P. (1980). Penile erection following complete spinal cord injury in man. British Journal of Urology, 52, 216–219. DeHaan, C., & Wallander, J. (1988). Self-concept, sexual knowledge and attitudes, and parental support in the sexual adjustment of women with early- and late-onset disability. Archives of Sexual Behavior, 17, 145–161. de Heer, R. (Producer/Director), & Rose, H. (Writer). (1998). Dance me to my song [Documentary motion picture]. Australia: Vertigo Productions Pty. Earle, S. (1999). Facilitated sex and the concept of sexual need: Disabled students and their personal assistants. Disability & Society, 14, 309–323. Fields, J., & Hirschman, C. (2003, September 26). Citizenship lessons: Sexuality education in the United States. American Sexuality, 1(6). Retrieved

Vol. 4, No. 1

11


Journal of NSRC

September 29, 2006, from http://nsrc.sfsu.edu/ MagArticle.cfm?Article=164&PageID=51&SID=9035 4631B685EABD7E7D69BBD8E3629C&DSN=nsrc_dsn Fitting, M., Salisbury, S., Davis, M., & Maydin, D. (1988). Self-concept of spinal cord injured women. Archives of Sexual Behavior, 7, 43–156. Foucault, M. (1979a). Governmentality. Ideology and Consciousness, 6, 5–29. Foucault, M. (1979b). The history of sexuality (Vol. 1). London: Allen Lane. Fraley, S., Mona, L., & Theodore, P. (2007). The sexual lives of lesbian, gay, and bisexual people with disabilities: Psychological perspectives. Sexuality Research and Social Policy: Journal of NSRC, 4(1), 15–26. Gagnon, J., & Parker, R. (1995). Conceiving sexuality. In R. Parker & J. Gagnon (Eds.), Conceiving sexuality: Approaches to sex research in a postmodern world (pp. 3–16). New York: Routledge. Geiger, R., & Knight, S. (1975, March). Sexuality of people with cerebral palsy. Medical Aspects of Human Sexuality, 70–83. Gill, C. (1989). Sexuality and disability research: Suffering from a case of the medical model. Disability Studies Quarterly, 9(3), 12–15. Groce, N. (2003). HIV/AIDS and people with disability. The Lancet, 361, 1401–1402. Grossman, B., Shuttleworth, R., & Prinz, P. (2004). Locating sexuality in disability experience: Reflections from the United Kingdom Disability Association Meeting. Sexuality Research & Social Policy: Journal of NSRC, 1(2), 91–96. Guldin, A. (1999). Claiming sexuality: Mobility-impaired people and sexualities in American culture. Unpublished master’s thesis, University of Iowa, Iowa City. Guldin, A. (2000). Self-claiming sexuality: Mobility impaired people in American culture. Sexuality and Disability, 18, 233–238. Guter, B., & Killacky, J. (Eds.). (2004). Queer crips: Disabled gay men and their stories. New York: Harrington Park Press. Hahn, H. (1981). The social component of sexuality and disability: Some problems and proposals. Sexuality and Disability, 4, 220–233. Hahn, H. (1988). Can disability be beautiful? Social Policy, 18, 26–32. Halperin, D. (1990). One hundred years of homosexuality and other essays on Greek love. New York: Routledge. Hamilton, C. (2002). Doing the wild thing: Supporting an ordinary sexual life for people with intellectual disabilities. Disability Studies Quarterly, 22(3), 40–63.

March 2007

Harris, L. (2002). Disabled sex and the movies. Disability Studies Quarterly, 22(3), 144–161. Herdt, G. (2001, December). Sexuality and social inequality: New approaches to participatory research and ethnography [Abstract]. American Anthropological Association Meeting, Washington, DC. Hingsburger, D., & Melberg-Schwier, K. (2000). Sexuality: Your sons and daughters with intellectual disabilities. Baltimore: Paul Brookes Publishing. IHC New Zealand Incorporated. (2006, February). Relationships & sexuality policy. New Zealand: Author. Jackson, R. (1972). Sexual rehabilitation after cord injury. Paraplegia, 10(1), 50–55. Jacobson, D. (2000). The sexuality and disability unit: Applications for group training. Sexuality and Disability, 18, 175–178. Johnson, K., Hillier, L., Harrison, L., & Frawley, P. (2001). People with intellectual disabilities living safer sexual lives. Melbourne: Australian Research Centre in Sex, Health and Society, La Trobe University. Kafer, A. (2004). Inseparable: Gender and disability in the amputee-devotee community. In B. Smith & B. Hutchison (Eds.), Gendering disability (pp. 107–118). New Brunswick, NJ: Rutgers University Press. Kreuter, M., Sullivan, M., & Siosteen, A. (1996). Sexual adjustment and quality of relationships in spinal paraplegia: A controlled study. Archives of Physical Medicine and Rehabilitation, 77, 541–548. Lofgren-Martenson, L. (2004). “May I?” About sexuality and love in the new generation with intellectual disabilities. Sexuality and Disability, 22, 197–207. Longmore, P. (1987). Screening stereotypes: Images of disabled people in television and motion pictures. In A. Gartner & T. Joe (Eds.), Images of the disabled, disabling images (pp. 65–78). New York: Praeger. Mairs, N. (1996). Waist-high in the world. Boston: Beacon Press Books. Mayer J., & Eisenberg, M. (1988). Mental representation of the body: Stability and change in response to illness and disability. Rehabilitation Psychology, 33, 155–171. McRuer, R., & Mollow, A. (Eds.). (in press). Sexuality and disability: Humanities perspectives. New York: New York University Press. McRuer, R., & Wilkerson, A. (Eds.). (2003). Desiring disability: Queer theory meets disability studies. GLQ: A Journal of Lesbian and Gay Studies, 9. McDermott, S., Martin, M., Weinrich, M., & Kelly, M. (1999). Program evaluation of a sex education curriculum for women with mental retardation. Research in Developmental Disabilities, 20, 93–106.

Vol. 4, No. 1

12


Journal of NSRC

McGrath, D. (2003, June). Sexuality education: U.S. policy, politics, and practice. Paper presented at the Seventh International Women’s Policy Research Conference, Washington, DC. Mona, L. (2003). Sexual options for people with disabilities: Using personal assistance services for sexual expression. Women & Therapy, 26, 211–220. Mona, L., & Gardos, P. (2000). Disabled sexual partners. In L. Szuchman and F. Muscaralla (Eds.), Psychological perspectives on human sexuality (pp. 309–354). New York: John Wiley & Sons. Mona, L., Gardos, P., & Brown, R. (1994). Sexual self views of women with disabilities: The relationship among age-of-onset, nature of disability and sexual self-esteem. Sexuality and Disability, 12, 261–278. Mona, L., & Shuttleworth, R. (Guest Eds.). (2000). Special Conference Issue (1). Sexuality and Disability, 18. Mona, L., & Shuttleworth, R. (Guest Eds.). (2002). Symposium: Focus on sexual access for disabled people. Disability Studies Quarterly, 22(3). Nigro, G., & Sherer, D. (1981). Sexual implications of cerebral palsy. In D. Bullard and S. Knight (Eds.), Sexuality and physical disability: Personal perspectives. St. Louis, MO: C. V. Mosby. Nosek, M. (1996). Sexual abuse of women with physical disabilities. In D. Krotoski, M. Nosek, & M. Turk (Eds.), Women with physical disabilities: Achieving and maintaining health and well-being (pp. 153–173). Baltimore: Paul H. Brookes. Nosek, M., Foley, C., Hughes, R., & Howland, C. (2001). Vulnerabilities for abuse among women with disabilities. Sexuality and Disability, 19, 177–189. Olkin, R. (1999). What psychotherapists should know about disability. New York: The Guilford Press. Parker, R. (1997). Sexual rights: Concepts and action. Health and Human Rights, 2(3), 31–37. Parker, R., Barbosa, R., & Aggleton, P. (2000). Introduction: Framing the sexual subject. In R. Parker, R. Barbosa, & P. Aggleton (Eds.), Framing the sexual subject: The politics of gender, sexuality and power (pp. 1–25). Berkeley: University of California Press. Potgieter, C., & Khan, G. (2005). Sexual self-esteem and body image of South African spinal cord injured adolescents. Sexuality and Disability, 23, 1–20. Reynolds, D. (2007). Disability and BDSM: Bob Flanagan and the case for sexual rights. Sexuality Research and Social Policy: Journal of NSRC, 4(1), 40–52. Roop, S., & Sharma, S. (2005). Sexuality and women with spinal cord injury. Sexuality and Disability, 23, 21–33.

March 2007

Rousso, H. (1993). Special considerations in counseling clients with cerebral palsy. Sexuality and Disability, 11, 99–110. Sakellariou, D. (2006). If not the disability, then what? Barriers to reclaiming sexuality following spinal cord injury. Sexuality and Disability, 24, 101–111. Schaller, J., & Fieberg, J. (1998). Issues of abuse for women with disabilities and implications for rehabilitation counseling. Journal of Applied Rehabilitation Counseling, 29(2), 9–17. Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The sexual politics of disability: Untold desires. New York: Cassell. Shildrick, M. (2004a). Queering performativity: Disability after Deleuze. SCAN: Journal of Media Arts Culture, 1(3). Retrieved November 22, 2006, from http:// scan.net.au/scan/journal/display.php?journal id=36 Shildrick, M. (2004b). Silencing sexuality: The regulation of the disabled body. In J. Carabine (Ed.), Sexualities: Personal lives and social policy. Bristol, England: Open University. Shildrick, M. (2005). Unreformed bodies: Normative anxiety and the denial of pleasure. Women’s Studies, 34, 327–344. Shildrick, M. (2007). Contested pleasures: The sociopolitical economy of disability and sexuality. Sexuality Research and Social Policy: Journal of NSRC, 4(1), 53–66. Shuttleworth, R. (2000a). The pursuit of sexual intimacy for men with cerebral palsy. Unpublished doctoral dissertation, University of California, San Francisco and Berkeley. Shuttleworth, R. (2000b). The search for sexual intimacy for men with cerebral palsy. Sexuality and Disability, 18, 263–282. Shuttleworth, R. (2001a, November). Disabled men— Negotiating sexual intimacy in disability culture. Paper presented at the annual American Anthropological Association meeting, Washington, DC. Shuttleworth, R. (2001b). Symbolic contexts, embodied sensitivities and the lived experience of sexually relevant, interpersonal encounters for a man with severe cerebral palsy. In B. Swadener & L. Rogers (Eds.), Semiotics and dis/ability: Interrogating categories of difference (pp. 75–95). New York: SUNY Press. Shuttleworth, R. (2002). Defusing the adverse context of disability and desirability as a practice of the self for men with cerebral palsy. In M. Corker & T. Shakespeare (Eds.), Disability and postmodernity: Embodying disability theory (pp. 112–126). London: Continuum.

Vol. 4, No. 1

13


Journal of NSRC

Shuttleworth, R. (2005). Sexual access. In G. Albrecht (Ed.), Encyclopedia of disability (pp. 1443–1445). Thousand Oaks, CA: Sage. Shuttleworth, R. (2006). Disability and sexuality: Toward a constructionist focus on access and the inclusion of disabled people in the sexual rights movement. In N. Teunis & G. Herdt (Eds.), Sexual inequalities and social justice (pp. 174–207). Berkeley: University of California Press. Shuttleworth, R. (in press). Grounding theory in lived experience: A critical-interpretive ethnography of disability and sexuality. In R. McRuer & A. Mollow (Eds.), Sexuality and disability: Humanities perspectives. New York: New York University Press. Shuttleworth, R., & Mona, L. (Guest Eds.). (2000). Special conference issue (2). Sexuality and Disability, 18. Shuttleworth, R., & Mona, L. (2002). Introduction: Toward a focus on sexual access in disability and sexuality advocacy and research. Disability Studies Quarterly, 22(3), 2–9. Sipski, M., Alexander, C., & Rosen, C. (1995). Physiological parameters associated with psychogenic sexual arousal in women with complete spinal cord injuries. Archives of Physical Medicine and Rehabilitation, 76, 811–818. Snell, W., & Papini, D. (1989). The sexuality scale: An instrument to measure sexual-esteem, sexual depression, and sexual preoccupation. Journal of Sex Research, 26, 256–263. Sobsey, D., & Doe, T. (1991). Patterns of sexual abuse and assault. Sexuality and Disability, 9, 243–260. Stanton, D. (Ed.). (1992). Discourses of sexuality: From Aristotle to AIDS. Ann Arbor: University of Michigan Press. Stein, E. (Ed.). (1992). Forms of desire: Sexual orientation and the social constructionist controversy. New York: Routledge. Stinson, J., Christian, L., & Dotson, L. (2002). Overcoming barriers to the sexual expression of women with developmental disabilities. Journal of the Association for Persons With Severe Handicaps, 27(1), 18–26. Taleporos, G., & McCabe, M. (2001). The impact of physical disability on body esteem. Sexuality and Disability, 19, 177–183.

March 2007

Taleporos, G., & McCabe, M. (2002). Body image and physical disability personal perspectives. Social Science and Medicine, 54, 971–980. Tepper, M. (2000). Facilitated sex: The next frontier in sexuality? New Mobility, 11(84), 21–24. Teunis, N., & Herdt, G. (2006). Introduction. In N. Teunis & G. Herdt (Eds.), Sexual inequalities and social justice (pp. 1–30). Berkeley: University of California Press. Tremain, S. (2000). Queering disabled sexuality. Sexuality and Disability, 18, 291–300. Tsuji, I., Nakajima, F., Morimoto, J., & Nounaka, Y. (1961). The sexual function in patients with spinal cord injury. Urology International, 12, 270–280. Wade, H. (2002). Discrimination, sexuality and people with significant disabilities: Issues of access and the right to sexual expression in the United States. Disability Studies Quarterly, 22(3), 9–30. Waxman, B. (2000). Current issues in sexuality and the disability movement. Sexuality and Disability, 18, 167–174. Waxman, B., & Finger, A. (1989). The politics of sex and disability. Disability Studies Quarterly, 9(3), 1–5. Wazakili, M., Mpofu, R., & Devlieger, P. (2006). Experiences and perceptions of sexuality and HIV/AIDS among young people with physical disabilities in a South African township: A case study. Sexuality and Disability, 24, 77–88. Wentzell, E. (2006). Bad bedfellows: Disability sex rights and Viagra. Bulletin of Science, Technology & Society, 26, 370–377. Westgren, N., & Levi, R. (1999). Sexuality after injury: Interviews with women after traumatic spinal cord injury. Sexuality and Disability, 17, 309–319. Wilkerson, A. (2002). Disability, sex radicalism, and political agency. NWSA Journal, 14(3), 33–57. Wolfe, P., & Blanchett, W. (2000). Moving beyond denial, suppression and fear to embracing the sexuality of people with disabilities. TASH Newsletter, 26, 5–7. Zeitlin, A., Cottrell, T., & Lloyd, F. (1957). Sexology of the paraplegic male. Fertility and Sterility, 8, 337–344.

Vol. 4, No. 1

14