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Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement

Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement

by Don Kulick

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Few people these days would oppose making the public realm of space, social services and jobs accessible to women and men with disabilities. But what about access to the private realm of desire and sexuality? How can one also facilitate access to that, in ways that respect the integrity of disabled adults, and also of those people who work with and care for


Few people these days would oppose making the public realm of space, social services and jobs accessible to women and men with disabilities. But what about access to the private realm of desire and sexuality? How can one also facilitate access to that, in ways that respect the integrity of disabled adults, and also of those people who work with and care for them?

Loneliness and Its Opposite documents how two countries generally imagined to be progressive engage with these questions in very different ways. Denmark and Sweden are both liberal welfare states, but they diverge dramatically when it comes to sexuality and disability. In Denmark, the erotic lives of people with disabilities are acknowledged and facilitated. In Sweden, they are denied and blocked. Why do these differences exist, and how do both facilitation and hindrance play out in practice?

Loneliness and Its Opposite charts complex boundaries between private and public, love and sex, work and intimacy, and affection and abuse. It shows how providing disabled adults with access to sexual lives is not just crucial for a life with dignity. It is an issue of fundamental social justice with far reaching consequences for everyone.

Editorial Reviews

Disability Rights and Wrongs - Tom Shakespeare

"This is far and away the best book on disability and sexuality I have read for years. The authors provide a fascinating analysis of attitudes and practices in Denmark and Sweden, which has relevance to how we achieve sexual citizenship for disabled people everywhere. It's a very welcome contribution to a very important debate"
Martha C. Nussbaum

"Conceptually deft and sophisticated, based on fascinating empirical research, but above all radiant with a clear-eyed and respectful humanity,  Loneliness and Its Opposite is a gem, a major contribution to disability studies and to thought about social justice."
Choice - J. L. Croissant

“Complex but important to disability studies programs. … Recommended. Graduate students, faculty, professionals."
Times Higher Education - E. Stina Lyon

“This is a powerful book, sure to make the reader sit up, both intellectually and emotionally, as it considers a subject still largely hidden from investigative scrutiny because of ignorance, anxiety, prejudice and false moralities…. Loneliness and its Opposite will make highly rewarding reading for academically oriented insiders and various feminist, queer, disability and welfare state theorists.”
Social Anthropology - Margaret Campbell

"Kulick and Rydström make important and timely contributions to several disciplines, including disability studies, social work and gender studies. Loneliness and Its Opposite is a must-read for those who work with and care for people with disabilities and it should also be of great interest to disability and gender studies scholars. Readers will be impressed by the breadth of historical detail and will be challenged to further consider the materiality of disability. . . ."
Feminist Review - Kelly Fritsch

"Loneliness and its Opposite is an important contribution to the ongoing work of advancing the sexual lives of disabled people, particularly in its empirical findings that show how life changing politically progressive policy frameworks can be for disabled lives when they are both well funded and when there exists a strong commitment to facilitating those policies in practice."
Medical Anthropology Quarterly - Karen Nakamura

"Thought provoking, intentionally humorous at many times, and possessing a rare clarity in argument, this book should be broadly assigned, read, and debated in both undergraduate and graduate seminars."
Somatosphere - Narelle Warren

"As a medical anthropologist interested in chronicity and impairment, I’m more than a little in love with Loneliness and Its Opposite. It makes me attempt to take a more inclusive and daring approach, both in the topics I study as well as the work produced. The work is compelling and accessible, written in a style that captures the reader at the start and holds that interest throughout."
The New Rambler Review - Alexander A. Boni-Saenz

"Loneliness and Its Opposite goes a long way toward understanding how a right to sex might be realized for people with disabilities. In their engaging anthropological/historical study of Denmark and Sweden, we hear from sex workers and people with disabilities, read about obscure policy papers and academic articles on disability, and see sexually explicit education pamphlets and movie stills. All of this provides the reader with a rich understanding of those countries’ approaches to sexuality and disability. In the process, it forces us to confront the role of the state in facilitating sexual expression for those with cognitive or physical impairments."
American Anthropologist - Bjarke Oxlund

"[S]imultaneously unsettles a number of taken-for-granted notions about what it means to care or what it means to fulfill a right. As such, this intriguing book deserves a readership outside the realm of sexuality or disability studies."

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Loneliness and Its Opposite

Sex, Disability, and the Ethics of Engagement

By Don Kulick, Jens Rydström

Duke University Press

Copyright © 2015 Duke University Press
All rights reserved.
ISBN: 978-0-8223-7584-5


the subject of sex

Axel Branting is a Swedish man in his late fifties who has worked in sex education, in various capacities, for many years. Partly because he has a minor disability himself, he has developed a special expertise on the subject of sexuality and disability, and he earns some of his income by counseling people who have a variety of physical and intellectual impairments.

A few years ago, a woman in her early thirties came to Branting for advice. The woman had been in an accident a decade earlier and was paralyzed from the neck down. She told Branting that she had a sexual problem: after having been unable to experience any erotic sensation since her accident, she'd recently discovered that whenever her male assistants lifted her out of her wheelchair to bathe her, she had an orgasm.

Branting was baffled. "So what's the problem?" he asked her.

The problem, the woman explained, was that her male assistants had noticed that she found being lifted arousing, and so they had begun avoiding lifting her. Whenever they could, they waited for female assistants to do the lifting—something the woman did not find erotically titillating at all.

It took Branting only a moment to guess why the male assistants had responded as they had. They were probably afraid. They were afraid that any hint of erotic frisson from the woman, even if it arose as a result of an innocent and necessary act, like lifting her out of her wheelchair to bathe her, might open them to accusations of sexual abuse. They must have talked among themselves and agreed to stop lifting her, Branting thought.

But they never discussed any of this with the woman, and she didn't know how to bring it up with them. She felt humiliated and depressed, and she lamented the loss of her only possibility of erotic sensation.

Branting was only visiting the area where he met the woman and had no chance of intervening by talking to the assistants. Yet he was distressed that the woman was being treated so callously. And so he offered her the only piece of counsel he could think of. Turning centuries of advice prescribed to sexually unfulfilled women on its head, Branting told her that next time one of the male assistants lifted her, "Close your eyes and pretend like you're not having an orgasm."

* * *

A quadriplegic woman like the one who came to Axel Branting for help with her sex life challenges a number of assumptions and boundaries. Not only does the woman clearly have a sexuality (something which, in itself, may surprise many people), but her dependency on personal assistants to help her experience that sexuality raises vexing issues about where a boundary might be drawn between intimate assistance and erotic involvement.

The woman's anguish over the loss of her only opportunity for sexual pleasure also raises the question of what sex is, given that the activity that led to her achieving orgasm was nothing more than the simple experience of being lifted out of her wheelchair (Axel Branting guessed that her arousal probably had something to do with her blood pressure suddenly sinking as she was being lifted).

Situations like this are difficult. A main source of the difficulty is that they exist at all: they raise issues that many people feel are best left avoided. The sexual desires and lives of women and men with disabilities is a subject that makes many nondisabled people deeply uncomfortable. That discomfort often expresses itself in a curious combination of squeamishness and verbosity: nondisabled people don't like thinking about disabled people having sex, but are nevertheless surprisingly willing to express an opinion about whether or not women and men with disabilities have any sexual rights.

Individuals like the woman who came to see Branting are hard cases, but the most problematic ones of all involve adults with congenital disabilities, such as significant cerebral palsy or significant Down syndrome. Many non-disabled people may find it possible to express understanding of and sympathy for the sexual desires of, say, a good-looking, twenty-three-year-old hockey player who breaks his back and ends up a paraplegic in a wheelchair. But far fewer people have comparable levels of understanding and sympathy when the person with sexual desires is a fifty-four-year-old man with Down syndrome or a woman born with cerebral palsy so severe that she has no verbal language, drools occasionally, and has arms and legs that need to be strapped to a wheelchair to help control spasticity. That such a person has a sexuality that he or she might need help in understanding and realizing is a thought that disturbs many people, who would much rather not have to think about such things. These kinds of significantly disabled adults are the ones who need the most help in exploring their sexuality. They are the ones who present the biggest challenge to the way we think about things like equality, justice, and ethical engagement.

This book addresses that challenge by exploring the erotic lives of individuals with disabilities and by describing how those lives are either impeded or facilitated by people who work with and care for them. The material we present focuses on the most complex and difficult cases: of people with significant disabilities (such as severe forms of cerebral palsy or intellectual impairment) who either have no partners—and who, therefore, like the woman who came to Axel Branting for advice, are dependent on helpers and others to be able to experience sex—or who do have partners but whose partners also have mobility impairments that render them unable to engage in sexual activity without the assistance of a third party.

The people we will discuss have limited or no mobility in their limbs. Or they are individuals who have trouble understanding the boundary between public and private space—a difficulty compounded by the fact that many of them live in group homes where the boundary between public and private is anything but clear-cut. They are people who need assistance to perform basic activities like eating, bathing, going to the toilet—and masturbating or having sex with a partner. How is the sexuality of people like this expressed and recognized? How is it treated? How is it lived?

The context for this study is two different Scandinavian countries, Denmark and Sweden: two prototypical welfare societies that are usually portrayed in English-language literature as being both sexually progressive and at the forefront of rights for people with disabilities. As far as phenomena having to do with gender equality between women and men (such as equal pay, parental leave, and political representation), it is true that, by international standards, both Denmark and Sweden are impressively progressive. Both countries spend about 30 percent of their domestic budget on social services (as compared to 24 percent in the United Kingdom and 20 percent in the United States), and universal health care is largely free. To people with significant disabilities, both countries provide state-sponsored pensions, housing in group homes, and personal assistance to those who choose to live in their own homes.

Denmark and Sweden also resemble each another when it comes to disability politics and disability activism. In both countries large national disability associations were established in the mid-1920s; in both countries, eugenics campaigns in the 1930s led to the coerced or forced sterilization of tens of thousands of people with various kinds of impairments; and in both countries, de-institutionalization in the 1980s made it possible for many people with disabilities to lead more independent lives.

Those structural and historical similarities make all the more perplexing the fact that one area where Denmark and Sweden diverge dramatically is, precisely, in ideologies and practices regarding the erotic lives of people with significant disabilities. Put as starkly as possible, the difference is this: in Sweden, the sexuality of people with disabilities is denied, repressed, and discouraged. In Demark, on the contrary, the sexuality of people with disabilities is acknowledged, discussed, and facilitated. Why does this difference exist? How is it experienced by people with disabilities and those who work with and care for them? What does it mean for more general understandings and practices of ethical engagement and social justice? Those are the questions we examine in this book.

The Significance of Sex

The sexual lives of adults with disabilities is not a new concern, but it is only very recently that it has begun to be discussed in any way other than incredulously, dismissively, or with punitive intent. A groundbreaking 1996 book titled The Sexual Politics of Disability spent two hundred pages presenting material from interviews and questionnaires in order to conclude that disabled people "can talk about sex. We can have sex —we are entitled to have sex and find love. We do face oppression, abuse and prejudice, but we can fight back and we can demand support and the space to heal" (emphasis in original). That such startlingly self-evident truths needed to be asserted with such insistence as recently as twenty years ago testifies to the staggering resistance that confronts people with disabilities simply to be regarded as adults.

Deeply ingrained prejudices play a central role in that resistance. Many commentators have pointed out that the widespread belief that "disability = helplessness" encourages people to associate disabled adults with children and, hence, with sexual innocence and asexuality. Others have described alternative reasons that might explain the incomprehension and sometimes naked hostility that expressions of sexuality among disabled individuals can provoke in nondisabled people. Alison Lapper, a British artist born in 1965 with no arms and shortened legs, spent her childhood and youth in various institutions. At one point, when staff suspected she might be engaging in "activity below the waist" with a male friend, the couple were whisked away and interrogated separately by "a board consisting of the headmaster, the warden, the deputy warden and just about everybody else who had any rank." Lapper was forced to undergo a gynecological examination, and she and her male friend were forbidden to meet, talk, or even look at one another ever again. They were also both ordered to undergo separate sessions with a psychotherapist. The reason for this extreme (but, in the late 1970s, utterly common) reaction, Lapper thinks, is because

the general view among the staff was that we shouldn't be thinking about sex at all. Having the kinds of impairments that we all exhibited meant in their eyes that it was our duty to turn our backs on the possibility of sex. It was a very prejudiced view that had two particular components. Firstly, they thought we were too repulsive physically for anyone able-bodied to possibly consider us sexually attractive. Secondly, there was something so fundamentally wrong about our shapes that it would not be right for us to contemplate any sexual activity even with each other, even if we felt the inclination. Ideally, we were to put that part of life aside.

Well aware of experiences like the one Lapper describes, the disabled American author Anne Finger has remarked that "sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain." She goes on to critique disability rights activism for neglecting sexuality as a key element of struggle. Her critique hit a sore spot—it is widely cited in commentaries that point out that the disability rights movement has not exactly clamored for sexual rights: its activism has largely been concerned with the public domain—access, employment, discrimination. One disability rights activist and scholar summarized this approach pithily when he explained that "ending poverty and social exclusion comes higher on the list of needs than campaigning for a good fuck."

Such an attitude is understandable, but the point made by critics like Finger is that neglect of sexuality has contributed to keeping the private sphere both under-theorized and under-politicized. This is unacceptable, not least because for many disabled people, especially those who live in group homes, or who need assistance to do things like bathe and dress, the line between public and private is blurred, and often it is neither acknowledged nor respected.

Ignoring sexuality, or believing that it should be a secondary focus of struggle, is also misguided because sexual agency is a decisive marker of adult status in society. The idea that people with disabilities somehow aren't interested in sex, or shouldn't be interested in it, both derives from and reinforces the patronizing stereotype that disabled adults are like children. This is a prejudice, a furtive way of denying that disabled adults are adults—or even, in an important sense, that they are fully human beings. In his memoir about life in an iron lung, Mark O'Brien wrote that once, in a rehabilitation center, a doctor screened a movie about sexuality and disability for him and other people on his ward. Addressing the group after the film, the doctor said, "You may think you'll never have sex again, but remember ... some people do become people again."

Of course, the other prejudice that confronts people with disabilities is not that they are asexual, but, rather, that they are hypersexual. This old chestnut circulated around the globe with renewed vigor during the 2012 Paralympic Games in London via a report claiming that in only a few days, the Paralympic athletes had worked their way through 11,000 condoms and that organizers of the event had had to order more. A journalist writing for the British Channel 4 calculated that at the rate they were going, the just over 4,000 Paralympians would use almost 43,000 condoms by the time of the closing ceremony, "with an impressive condom per athlete ratio of 10.2 condoms each."

This was a spicy item. It was featured on television and appeared in newspapers around the world as an amusing human interest story, a nudge-nudge, wink-wink reminder that crippled people shouldn't fool you—beneath their pity-inducing exteriors beat throbbing libidos just waiting to be unleashed. Unable to resist the opportunity to fondle a sagging cliché, the Sunday Independent newspaper even included a quote by an observer who volunteered that "I have noticed that people of small stature are often highly sexed and I have a theory that this is because they have, out of proportion to the rest of their bodies, large heads and genitals, thus probably have a higher proportion of testosterone whizzing around in their bodies."

Oversexed dwarves are the flip side of the asexual child coin. Both stereotypes denigrate adults with disabilities, and both function to imbue the topic of sex and disability with a sinister shadow of threat and danger: of sexuality out of control, of perversion, and of abuse.

All this is beginning to change. A major source of that change is people with disabilities, some of them feminist or queer, who understand that sexuality is a nexus of power, but many of them with no particular politics other than a desire to be treated like adults.

The large institutions that used to house people with disabilities were closed in most western European and North American countries in the 1970s and 1980s, and today large numbers of people with disabilities are living independently. Enabled by direct payment schemes, they hire personal assistants who are their employees, not their overseers. They have been empowered by disability rights activism to demand access, support, and respect. As part of their increased capability for independence, many are actively and unapologetically exploring their sexuality. They are finding partners, engaging in romantic relationships, and refusing to be told that a disability automatically disqualifies them from having an erotic life.

The days when people with disabilities could be made to feel "it was our duty to turn our backs on the possibility of sex" are over. Today, books of poetry and memoirs by disabled authors who discuss sex are not hard to find. A few random examples in English are Jillian Weise's volume The Amputee's Guide to Sex (2007), whose titular poem consists of three sections: "I. Removal of Prosthetic"; "II. Foreplay"; "III: Sex." Cripple Poetics: A Love Story (2008), a lusty book by Petra Kuppers and Neil Marcus, contains lines like, "How can I speak of cripple and not mention the wind / How can I speak of cripple and not mention the heart." Many of the poems in Mark O'Brien's volume The Man in the Iron Lung (1997) are about sex, and the chapter in his 2003 memoir titled "The Sex Surrogate" was recently made into The Sessions, a successful Hollywood feature film.


Excerpted from Loneliness and Its Opposite by Don Kulick, Jens Rydström. Copyright © 2015 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.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Meet the Author

Don Kulick is Professor of Anthropology at the University of Chicago. His books include Travesti: Sex, Gender, and Culture among Brazilian Transgendered Prostitutes.

Jens Rydström is Professor of Gender Studies at Lund University (Sweden). His books include Sinners and Citizens: Bestiality and Homosexuality in Sweden, 1880-1950.

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