"This riveting collection of essays is a fascinating rethinking of what sex and disability could feel like together, affirmatively and generatively. Opening with a candid, frank introduction that moves deftly between the autobiographical and the political, the volume mounts a serious challenge to the sex-ableism of queer theory and the tendency to think of sex and disability in negative terms. Having read about pregnant men, the vagaries of touch, amputee devotees, and sex addiction, the reader will emerge uncertain about what exactly sex is, who has it, and with what. More trenchantly, these works demand an acknowledgement of how notions of ableism severely limit broader experiences of sexual erotics, intimacy, and arousal. Kudos to the editors for undertaking this important project."—Jasbir K. Puar, author of Terrorist Assemblages: Homonationalism in Queer Times
Sex and Disabilityby Robert McRuer
The title of this collection of essays, Sex and Disability, unites two terms that the popular imagination often regards as incongruous. The major texts in sexuality studies, including queer theory, rarely mention disability, and foundational texts in disability studies do not discuss sex in much detail. What if "sex" and "disability" were understood as intimately related concepts? And what if disabled people were seen as both subjects and objects of a range of erotic desires and practices? These are among the questions that this collection's contributors engage. From multiple perspectives—including literary analysis, ethnography, and autobiography—they consider how sex and disability come together and how disabled people negotiate sex and sexual identities in ableist and heteronormative culture. Queering disability studies, while also expanding the purview of queer and sexuality studies, these essays shake up notions about who and what is sexy and sexualizable, what counts as sex, and what desire is. At the same time, they challenge conceptions of disability in the dominant culture, queer studies, and disability studies.
Contributors. Chris Bell, Michael Davidson, Lennard J. Davis, Michel Desjardins, Lezlie Frye, Rachael Groner, Kristen Harmon, Michelle Jarman, Alison Kafer, Riva Lehrer, Nicole Markotić, Robert McRuer, Anna Mollow, Rachel O’Connell, Russell Shuttleworth, David Serlin, Tobin Siebers, Abby L. Wilkerson
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SEX AND DISABILITY
DUKE UNIVERSITY PRESSCopyright © 2012 Duke University Press
All right reserved.
Chapter OneTOBIN SIEBERS
A SEXUAL CULTURE FOR DISABLED PEOPLE
Sexuality is not a right which must be earned or a possession that must be purchased, but a state of being accessible to all individuals. Even those who sometimes have to fight for that access. —Lucy Grealy, "In the Realm of the Senses"
The emergence in recent decades of people who define their identities based on sexual preferences and practices is transforming the landscape of minority politics. Sexual minorities are fighting for the rights and privileges accorded to majority populations on many legal and political fronts. The fight over gay marriage is only the most public and contentious of current struggles for full and equal rights by a sexual minority. Proponents of minority sexual identity attack the neat division between the private and public spheres, the relevance of the traditional family and its institutions of marriage and child rearing, and the moral certainty that sexuality is better controlled or repressed than set free. Claims that sexuality is a major part of a person's identity, that sexual liberation is a good in itself, and that sexual expression is a civil right crucial to human happiness have led to new conceptions of civic life linked to sex. Jeffrey Weeks argues that attention to sexual identity gives birth to the "sexual citizen." For him, sexual citizenship remedies "limitations of earlier notions of citizenship" (39), focuses attention on "sexualized identities" (38), and blunts "forces that inhibit" the "free, consensual development" of human relationships "in a democratic polity committed to full and equal citizenship" (38). Kenneth Plummer also represents the new sexual identities as a form of citizenship, defining "intimate citizenship" as "the control (or not) over one's body, feelings, relationships: access (or not) to representations, relationships, public spaces, etc; and socially grounded choices (or not) about identities, gender experiences" (14). Finally, Abby Wilkerson notes that oppressed groups tend to share the experience of sexual repression, explaining that sexual agency is central to political agency and that "sexual democracy should be recognized as a key political struggle" ("Disability" 35).
The emphasis on control over one's body, access to public spaces, and political agency will sound familiar to disability rights activists. Disabled people have long struggled to take control of their bodies from medical authorities and to gain access to built environments and public institutions. Like the sexual minorities described by Weeks, Plummer, and Wilkerson, disabled people experience sexual repression, possess little or no sexual autonomy, and tolerate institutional and legal restrictions on their intimate conduct. Moreover, legal and institutional forces inhibit their ability to express their sexuality freely and to develop consensual relationships with sexual partners.
It would be an exaggeration to define the oppression of disabled people exclusively in the sexual context; not many people with disabilities consider themselves a sexual minority. Nevertheless, I want to argue that disabled people do constitute a significant sexual minority and that recognizing their status as sexual citizens will advance the cause of other sexually oppressed groups. "Sexuality is often," Anne Finger explains about people with disabilities, "the source of our deepest oppression; it is also often the source of our deepest pain. It's easier for us to talk about—and formulate strategies for changing—discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction" (9). The facets of my argument are multiple, but most of them rely on the power of disability as a critical concept to defamiliarize how we think currently about sex. First, thinking about disabled sexuality broadens the definition of sexual behavior. Second, the sexual experiences of disabled people expose with great clarity both the fragile separation between the private and public spheres, as well as the role played by this separation in the history of regulating sex. Third, co-thinking sex and disability reveals unacknowledged assumptions about the ability to have sex and how the ideology of ability determines the value of some sexual practices and ideas over others. Finally, the sexual history of disabled people makes it possible to theorize patterns of sexual abuse and victimization faced by other sexual minorities.
My argument will hinge on what I call the "sexual culture" of people with disabilities. This phrase is meant to set in motion a process of defamiliarization directed at experiences so intimate and unspoken, so familiar and yet mysterious, that few people will discuss them. These experiences are bundled under what is colloquially called a "sex life"—a term I contrast heuristically to "sexual culture." Sexual culture refers to neither gender assignation nor sexual preference, although obviously they are components of sexual being. Sexual culture references the experience of sex itself. By sexual culture, I mean to suggest two ideas about how disabled sexuality disrupts the notion of a sex life: first, sexuality assumes a larger role in the quotidian life of people with disabilities than the usual phrase "sex life" indicates; second, the idea of a sex life is ableist. Being able-bodied assumes the capacity to partition off sexuality as if it were a sector of private life: that an individual has sex or a sex life implies a form of private ownership based on the assumption that sexual activity occupies a particular and limited part of life determined by the measure of ability, control, or assertiveness exercised by that individual. People with disabilities do not always have this kind of sex life. On the one hand, the stigma of disability may interfere with having sex. On the other hand, the sexual activities of disabled people do not necessarily follow normative assumptions about what a sex life is. Neither fact means that people with disabilities do not exist as sexual beings. One of the chief stereotypes oppressing disabled people is the myth that they do not experience sexual feelings or that they do not have or want to have sex—in short, that they do not have a sexual culture.
Two cautions must be remarked before I undertake an extended argument about the sexual culture of disabled people. First, the distinction between sex life and sexual culture does not turn exclusively on the issue of privacy. While disabled people sometimes lack privacy for sex, their situation is not unique. Gay, lesbian, bisexual, queer, and transgendered people also suffer from a lack of sexual privacy, and economic resources may determine whether people have sex in private or public. Crowded housing situations, for example, are as offensive to the conception of private sexual expression as health care facilities. The distinction between sex life and sexual culture relies not on privacy but on access as defined in a disability context: sexual culture increases access for disabled people not only by breaking down the barriers restricting them from sexual locations but also by bringing sexual rights to where they live. Second, the idea of sexual culture strips away what one might call the existential connotations of a sex life. Existentialism posits that identities are constructed by ourselves for ourselves, that all values are subjective, that we are responsible for our choices, and that we are condemned to be free. The notion of sexual culture relies on different presuppositions about identity. I define sexual identities as theory-laden constructions, combining both objective and subjective values, used by individuals to make choices, to test the consequences of their actions, and to explore the possibilities and responsibilities of their sexuality. Sexual culture is designed as a concept to provide a deeper, more sustained idea of how sex and identity interconnect by resisting the partitioning and privatization characteristic of a sex life. It means to liberate sex, allowing it to overflow the boundaries of secured places and to open up greater sexual access for people with disabilities.
NO WALKS ON THE BEACH
I am looking for an intelligent, literate woman for companionship and, perhaps, sexual play. I am, as you see, completely paralyzed, so there will be no walks on the beach. —Personal ad
Sex always happens somewhere. We go to certain places to fall in love or to have sex. A sex life, perhaps to our disappointment, tends to occur in the same places—the bedroom, hotels, automobiles, health clubs, baths, and so on. Sex will not happen if we do not have access to such places or if we cannot return to them once we discover that they permit sexual activity. If sex is walking together on the beach, if it is running across a field of flowers to meet in an embrace, what is the nature of sex apart from the ability to walk or to run? If a person's wheelchair gets stuck in the sand or if low vision makes it uncomfortable to dash across a field, does it mean that this person will have little chance of having sex? Clearly, people who do not do these things or go to these places manage to have sex, but that is not exactly the point. The point is to ask how the ideology of ability determines how we think about sex.
The ideology of ability represents the able body as the baseline of humanness. Absence of ability or lesser ability, according to this ideology, marks a person as less than human. The preference for ability permeates nearly every value in human culture, including the ability to have sex. In fact, sex may be the privileged domain of ability. Sex is the action by which most people believe that ability is reproduced, by which humanity supposedly asserts its future, and ability remains the category by which sexual reproduction as such is evaluated. As a result, sex and human ability are both ideologically and inextricably linked. Mark O'Brien recounts a story about the belief that the inability to have sex robs the disabled person of human status:
We watched a movie about disability and sexuality. The movie consisted of four or five able-bodied men joking and laughing about how they once lugged their crippled friend up a flight of stairs to a whorehouse.... After the movie, a doctor talked about disability and sexuality.... I will always remember his closing line: "You may think you'll never have sex again, but remember ... some people do become people again." (O'Brien and Kendall 80)
The doctor is speaking loosely about sex and membership in the human community, but he employs a widespread prejudice used against those who have lost human status along with the ability to have sex. What is it about sex that bestows human status? Barbara Waxman-Fiduccia argues that disability assumes the characteristic of a sexual perversion because disabled people are thought unable to produce "quality offspring" ("Current" 168–69). It is reproduction, then, that marks sexuality as a privileged index of human ability. In fact, the ideology of ability underlies the imperative to reproduce at many levels, establishing whether an individual supposedly represents a quality human being. First, sex appeal determines the opportunity to have sex. The greater a person's capacity to attract partners, the more opportunities to have sex. Second, a person must be able physically and mentally to have sex. Third, a person must be able to reproduce, to be either virile or fertile. To fail to be able to reproduce is somehow to fail as a human being. Finally, successful reproduction is thought to pass our essential abilities and qualities to our children. The predominant assumption is that what we are will be visited upon our children. If a person does not measure up to society's ideas about ability, that person's opportunities to have sex will be limited. People with disabilities share with gay men and lesbians the suspicion by majority populations that they cannot, will not, or should not contribute to the future of the human race. They will not reproduce, but if they do, the expectation is that the results will be tainted. Social stigma would have little impact on sexual behavior if it were not for the fact that ability represents the supreme measure of human choices, actions, thoughts, and values.
The concept of a sex life encapsulates many of the ways in which the ideology of ability distorts current attitudes about sexuality. At the most superficial level, a sex life is described almost always in the context of health. A sex life must be, first and foremost, a healthy sex life, and the more healthy a person is, the better the sex life is supposed to be. Whence the imperative in today's culture to "work on" one's sex life, to "improve" or "better" it, to do special exercises or adopt a particular diet for it, "to spice it up"—all for the purpose of discovering "the ultimate pleasure." These and other catchphrases attend the commodification of sex as healthy and satisfying, but the connection between a sex life and ability runs deeper than cliché. When disability is linked to sex, it becomes a clinical matter in which each disability betrays a particular limitation of sexual opportunity, growth, or feeling. The literature on sex and disability recites a litany of limitations for each category of impairment. The blind have trouble with sex because it centers supposedly on a visualization of the body as integral whole, and lacking sight, they cannot visualize what a body is (Hamilton 239). The mobility impaired and paralyzed are apparently cut off from sources of information about sex from peers, and their sexual development remains stunted (Shuttleworth, "Search" 265–66). Because of language delays, deaf people are believed to be emotionally and sexually immature, living without the language tools needed to meet the high standards of communication required for sex (Job 264, 266). Disabled women are said to tolerate sexism and objectification (Fine and Asch 29–30). In general, people with disabilities are thought to suffer from distorted body images, considering themselves ugly, and they do not feel at home with typical gender roles.
Because a sex life depends on ability, any departure from sexual norms reads as a disability, disease, or defect. Moreover, the equation runs in the other direction as well: disability signifies sexual limitation, regardless of whether the physical and mental features of a given impairment affect the ability to have sex. Eugenics and the Human Genome Project design futures for humanity on the basis of the desire to eliminate transmissible traits linked to disability, but the fear of disability also stymies intimate romantic relations, even when reproduction is not an expectation in the relationship. Many people in the disability community are still waiting, as Corbett Joan O'Toole explains, to hear a story in which a man or woman who chooses to be lovers with a disabled person is congratulated by family and friends for making a good choice (217). What sea change in current scientific, medical, political, and romantic attitudes would be necessary to represent disabled sexuality as a positive contribution to the future? To reconceive sexuality apart from ability, it would be necessary to imagine the sexual benefit of a given impairment, to claim and celebrate it as a sexual advantage.
PRIVATE PARTS IN PUBLIC PLACES
I was very shy before my accident. Dealing with lots of nurses doing extremely personal things to you—sometimes in front of other people—knocks off your shyness. —A quadriplegic
Excerpted from SEX AND DISABILITY Copyright © 2012 by Duke University Press. Excerpted by permission of DUKE UNIVERSITY PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Robert McRuer is Professor of English at the George Washington University. He is the author of Crip Theory: Cultural Signs of Queerness and Disability and The Queer Renaissance: Contemporary American Literature and the Reinvention of Lesbian and Gay Identities.
Anna Mollow is a PhD candidate in English at the University of California, Berkeley.
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