Sex and Disability anthologizes seventeen essays that aim for nothing less than "the reconceptualization of the categories of both 'sex' and 'disability'" (2), because, as the editors note, "the major texts in disability studies do not discuss sex in much detail and the major texts in sexuality studies, including in queer theory, rarely mention disability" (3). There are certainly a growing number of publications in this area, but the point is that these fields have not explored their considerable experiential and critical overlap nearly enough. The collection serves to showcase contributions from various perspectives, disciplines, methodologies, and styles, to whose heterogeneity a review cannot do justice. Instead, this review will highlight some of the central themes that bring these essays together: connecting heteronormativity and ableism, fostering disability-affirming sexual cultures, and politicizing disabled sex.
If reconceptualization of sex is one of the collection's main goals, then some of the most successful essays in this regard bring disability and sexuality studies together by transferring a concept from one field to the other and then rewriting it. Rachel Groner's "Sex as 'Spock': Autism, Sexuality, and Autobiographical Narrative," for instance, analyzes with a queer studies lens representations of sexuality in autobiographical writing by people with ASD (autism spectrum disorder), arguing that neurodiversity can challenge heteronormative scripts of sexuality. Groner pushes both queer and disability studies to take seriously the queer implications of autistic perspectives on relationality, sensuality, and the role of emotion in sexual cultures. In challenging heteronormative scripts "regardless of partner, activity, or intention" (280), autistic perspectives expose the neurotypical assumptions structuring heteronormativity and align with a notion of queer that goes beyond naming same-sex desire. Groner argues that disability studies exposes the ways in which heteronormativity is ableist not just through its norms of embodiment, but also in how it structures assumptions about the connections among relationality, emotional styles, and sexuality. Disability studies, then, is called to recognize how it participates in queer critique when it addresses sexuality, and queer studies is called to recognize how disability studies offers important insights to theorizing heteronormativity.
Whereas Groner considers ASD autobiography in light of queer theories of sexuality, Abby L. Wilkerson's "Normate Sex and Its Discontents" shows how disability studies approaches to stigmatized and privileged embodiments can further understanding of transgender and intersex embodiment, sexuality, and oppression. In particular, Wilkerson brings a disability lens to intersex and transgender sexuality by developing the concept of "normate sex" based on Rosemarie Garland-Thomson's idea of the "normate" as the ideal, unmarked social figure against which all others emerge as deviants (184). Arguing that the medicalization of intersex and transgender bodies highlights "the centrality of sex, gender, and sexuality concerns to the disability movement" (203) and "the inextricability of intersex, transgender, and disabled people's oppression," Wilkerson calls for envisioning a coalitional politics of "sexual-political interdependence" (204). Both Wilkerson and Groner demonstrate how work at the intersection of disability and sexuality studies can bring together theories of marginalized sexuality and embodiment in new ways.
Robert McRuer and Anna Mollow suggest that disability transforms sexuality studies by foregrounding the often asexualized embodiments and creative sexual practices of disabled people. Tracing how expectations of and assumptions about bodies and what they do or how they look structure sexual possibilities and opportunities, Russell Shuttleworth's "Bridging Theory and Experience: A Critical-Interpretive Ethnography of Sexuality and Disability" draws on the narratives from his ethnographic work with men with cerebral palsy. His interviewees report "multiple, often intractable, barriers to being perceived as sexual beings and to accessing sexual experiences" (56), and Shuttleworth uses these findings to theorize sexuality as an access issue. The idea of sexual access is generative in the context of disability studies, where access is well theorized in terms of physical, legal, and social barriers and where expanding this idea to more intractable aspects may seem promising. In addition, the use of access terminology highlights the ambivalence of casting sexualization as the solution to the asexualization and desexualization of people with disabilities. Being perceived and perceiving as sexual beings is culturally coded in gendered and gendering ways. Shuttleworth uses the language of access to reflect on the experiences of an all-male and predominantly heterosexual pool of interviewees (67, note 4). From a feminist perspective, thinking of sexuality as an access question requires careful attention to the gendered and objectifying implications of the term access. Accessing "sexual experiences" must mean participation in complex intersubjective dynamics and not access to sexualizing women as objects.
Alison Kafer addresses the ambivalence of sexualization as a potential obstacle to disability-affirming sexual cultures in her piece "Desire and Disgust: My Ambivalent Adventures in Devoteeism." As a queer, disability, and feminist theorist, Kafer pays close attention to the gendered dynamics at work in the devotee communities as well as in her approach to them. She traces devoteeism's ambivalent and ableist logic of desire: In claiming desire for disabled bodies as exceptional, devoteeism relies on disgust as much as it does desire (336). Kafer shows how this desire/disgust binary must be wrestled with "to imagine a sexuality that is rich and robust not in spite of impairment, and not fetishistically because of impairment, but in relationship to it" (346).
The essays in Sex and Disability offer a variety of ways of imagining the relationship between sex and disability. One example concerns the idea of sexual liberation and the role of what Michel Foucault calls the repressive hypothesis. If disability is widely imagined to preclude sexuality and if people with disabilities are represented as having no sexuality (if, in short, disabled sexuality is subject to repression and taboo), does it follow that sexual liberation promises freedom and that sexual expression itself has political potential? Foucault in The History of Sexuality warns against this kind of reading of Victorian sexual repression, arguing that instead of repression, there is the large-scale discursive production, a multiplication, categorization, and psychologization of sexuality, in which sexual liberation participates while believing itself to be in resistance (Foucault 1990). In "The Sexualized Body of the Child: Parents and the Politics of 'Voluntary' Sterilization of People Labeled Intellectually Disabled," Michel Desjardins discusses his interviews with parents of people with intellectual disabilities in Quebec. Rather than asexualizing their children through denial of sexual interest or access to all sexual expression, the parents impose rules and conditions (contraception, precautions against venereal disease, and monogamy). Most important for Desjardins's discussion of sterilization, the parents make sure to enforce the strong prohibition against reproduction for those labeled intellectually disabled. Because imposed sterilization is banned, parents convince their children, often in a lengthy process of persuasion, to apply for sterilization. Desjardins writes, "These persuasion devices, and the anticipated success of the young adults' applications, illuminate the reality that the law banning imposed sterilization is more often than not a fiction, a subterfuge, which mystifies everyone, including the parents" (81). The ban on imposed sterilization covers over the fact that the practice of sterilization persists, but is now construed as the young adult's own decision for infertility.
If parents of people labeled intellectually disabled persuade themselves and their children to pursue sterilization precisely in the name of the self-assertion and (nonprocreative) sexuality of those children, then the disciplinary power circulating is not the sexual repression and asexualization of disabled people. On the contrary, disciplinary power here circulates sterilization in the name of sexuality. This is not to say that repression can no longer to be found in any institutional, medical, and familial settings. There are many examples and contexts that make urgent and convincing Tobin Siebers's demand for "a sexual culture for disabled people" to counter stereotypes that desexualize people with disabilities (39). Siebers rightly notes that disability as a critical concept shifts the ways we think about definitions of sexual behavior, the often ableist valuations of sexual practices, and the fragile separation between public and private in the policing of sexuality. However, it might be necessary to differentiate disability as a critical concept from a mere affirmation of a sexual culture for people with disabilities, so we do not, to borrow Foucault's language, imagine that saying "yes" to disabled sex is saying "no" to power.
A great example of a disability perspective on sex that suspends liberatory expectations of both sexuality and identity politics can be found in Mollow's "Is Sex Disability? Queer Theory and the Disability Drive." Arguing that "the concepts of 'sexuality' (as it is elaborated in psychoanalytic theory) and of 'disability' (as it is figured in the cultural imaginary) share profound structural similarities" (287), Mollow reframes the death drive as a "disability drive." Drawing on Leo Bersani and Lee Edelman as representatives of queer negativity, Mollow theorizes those aspects of sex and disability "that undercut and perhaps even preclude assertions of humanity" (287) and critiques liberal humanist disability politics based in identity and pride. She instead argues that rather than trying to escape the contradictory construction that "disability can easily be interpreted as both sexual lack and sexual excess (sometimes simultaneously)" (286), the cultural position of disability can be used to underscore the "deeply rooted but seldom acknowledged awareness that all sex is incurably, and perhaps desirably, disabled" (310). Mollow challenges queer theorists like Edelman and Bersani to recognize how they rely on disability in their work, and she challenges disability studies to engage critiques of identity politics and humanist ideals of liberation, even in its politics of sex.
The complexities and potential pitfalls of a politics that simply imagines itself as set against sexual repression are in some ways illustrated by the issue of asexuality, a topic not featured in its own essay in the anthology. If disability is often represented as asexual, and making it sexy is the political horizon, then what do we make of the ways in which affirming universal sexual desire and sexuality as a (human) right is complicit with the pathologization of asexuality as a disability? How can we problematize asexualization without denying and denigrating asexuality?
As these questions for an imaginary eighteenth essay show, Sex and Disability leaves the reader only wanting more. The book's main contribution lies in asking: "What happens to our models, central arguments, and key claims when we politicize sex and disability together?" (3). The range of answers in this collection demonstrates how generative this approach can be for rethinking issues of bodies, desires, and identities. It will surely inspire future work at this rich intersection in feminist disability studies in particular, where sexuality meets gender and disability.
Foucault, Michel. 1990. The History of Sexuality. Volume 1: An Introduction. New York: Vintage.