Toward an Inclusive Sexuality and Disability Research Agenda
Russell Shuttleworth, Sexual Health Unit, Faculty of Health Sciences, University of Sydney
Abstract
In this presentation I argue that there is a need to develop a multifaceted model of research for the sexuality of disabled persons that includes the diversity of issues from a wide range of methodological and theoretical perspectives. I derive this argument from an extensive review and critique of the sexuality and disability research literature since the publication of The Sexual Politics of Disability, Shakespeare, Davies, and Gillespie-Sell's (1996) landmark study of disabled people's sexuality in the United Kingdom. Their social model influenced research suggested a focus on a broader range of sexuality and disability issues than those that had traditionally been emphasized in medical and rehabilitative science. How far has research on sexuality and disability come since this important study was published?
The overriding question that oriented the current literature critique was, what are the trends and gaps in sexuality and disability research since the publication of this important book? My research assistant and I conducted an extensive literature search using medical, social science and humanities on-line data bases with the target years 1996-2008. Research articles on sexuality and disability were categorized chronologically and in terms of three core aspects important to understanding the development of trends in this area: 1) the issue/question being examined; 2) the methods being utilized; and 3) how the study was conceptually framed. Within these categories subcategories were developed as part of the analysis.
Both the review and analysis phase of this project are still ongoing, however, preliminary findings reveal that while there is a much wider range of sexuality and disability issues currently being researched than during the mid-1990s, the traditional problems of sexual dysfunction and adjustment still command significantly more research attention. In fact, research on those issues that raise ethical and practice dilemmas and are not easily conceptualized such as disabled people's use of facilitated sex or sex workers are still rare, perhaps because they can encounter resistance from multiple sources including funding mechanisms, ethics committees and even some disabled people themselves. Similarly, while the theoretical landscape of sexuality and disability studies is becoming more complex, recently emergent approaches such as those utilizing critical or postmodern theory are few and far between with more clinically oriented researchers perhaps not seeing their immediate usefulness. These newer approaches, however, have the potential to shed significant light on the power relations, sexual prejudices, and oppressive practices that can inform disabled people's sociosexual situations and can imbue their sexual sense of self.
In the course of mapping the parameters of an inclusive sexuality and disability research agenda, I also make the argument that a major strand in this model must incorporate a social justice perspective that especially attends to the many violations of this population's sexual rights that occur across the globe. Likewise, the proposed research agenda should include exploration of disabled people's modes of resistance against barriers to their sexual participation, the sexual agency that they can often exhibit, and the sexual relationships that they often do develop.