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

Kulick, Don; Rydström, Jens

Hardcover

ISBN 10: 0822358212 ISBN 13: 9780822358213

Verlag: DUKE UNIV PR, 2015

Inhaltsangabe

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.

Über diesen Titel

Über die Autorin bzw. den Autor

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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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: 978-0-8223-5821-3

Contents

Acknowledgments, 
1 - The Subject of Sex, 
2 - The Roots of Engagement, 
3 - How to Impede and How to Facilitate the Erotic Lives of People with Disabilities, 
4 - Shifting Boundaries, 
5 - Paying for Sexual Services, 
6 - Why the Difference?, 
7 - Disability and Sexuality—Who Cares?, 
Appendix: Breakdown of Interviews, 
Notes, 
Bibliography, 
Index, 

CHAPTER 1

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...

Details zur Ausgabe

• Verlag: DUKE UNIV PR
• Erscheinungsdatum: 2015
• Sprache: Englisch
• ISBN 10: 0822358212
• ISBN 13: 9780822358213
• Einband: Gebundene Ausgabe
• Anzahl der Seiten: 376
• Kontakt zum Hersteller: Mare Nostrum Group B.V.; gpsr@mare-nostrum.co.uk; ; Doelen 72; Breda; 4831 GR; Niederlande