Book Review: Loneliness and Its Opposite: Sex, Disability, and the Politics of Engagement

Loneliness and Its Opposite: Sex, Disability, and the Politics of Engagement. Don Kulick and Jens Rydström, Durham: Duke University Press, 2015, 376 pp.

Do people with disabilities have the right to have sex? The United Nations Convention on the Rights of Persons with Disabilities states that nations must work “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (UNCRPD Article 1). Understanding whether this mandate extends to providing social services so that people with severe disabilities can have sex or masturbate is the topic of Don Kulick and Jens Rydström’s groundbreaking ethnography, Loneliness and Its Opposite.

Loneliness is a comparative ethnographic study of the capability for severely disabled people in Sweden or Denmark to have sex. In both countries, people with severe physical or intellectual disabilities live in state-provided group homes where a staff of social workers provide for their basic needs: cooking meals, feeding them, accompanying them to the movies or other entertainment, helping them bathe and defecate, and lifting them into their beds to sleep. The nature of their physical disabilities (such as cerebral palsy or spinal injury) often means that it would be difficult or impossible for them to have sex with other people or even to masturbate without physical assistance in disrobing, getting into bed, putting a pornographic DVD in the video player, positioning a sex toy, and so forth. For group home residents with intellectual disabilities, guidance and facilitation would also be necessary to safely or appropriately have sex or masturbate. But would such guidance, assistance, or facilitation on the part of staff be ethically responsible?

The two coauthors chose Denmark and Sweden as their case studies not only because of their intimate familiarity with their social systems (the authors are both Swedish) but because both countries are progressive welfare states that provide extensive social services for people with disabilities. Many people outside of Scandinavia also believe that Denmark and Sweden are more or less the same. The authors hope to dispel this perception by delineating core differences in Danish and Swedish political philosophies toward sex.

For example, while Sweden might appear sexually progressive (it is after all the birthplace of ABBA, as Kulick and Rydström like to point out), the authors argue that the general attitude is that sex is a private activity that the state has no role in promoting or regulating, except with regard to the possibility of violence or abuse. The leaders of disability services in Sweden note that not only is it specifically not their responsibility to provide information on how to have sex/masturbate or how to access sexual service providers (such as prostitutes), but that it might actually be a form of sexual abuse for staff at group homes to do so.

As a result, Kulick and Rydström find that disabled people in group homes in Sweden not only do not have access to any support for their sexualities (including consensual sex between adults and masturbation) but are often actively dissuaded from doing so. For people with disabilities in a group home, sex is both “unnatural, but public” (p. 80), thus it needs to be controlled or extinguished.

Political leaders and care providers in Sweden will say things such as “sex isn’t a need, like eating or sleeping” (p. 267) or “don’t wake the sleeping bear” (p. 84), meaning that they should not try to kindle a fire where there isn’t any smoke. This assumes that disabled people do not have any desire and that such desire (if it existed) would not rise to the level of a basic human need. Even masturbation is dissuaded as the cleanup of the fluids or masturbatory aids or seeing the magazines used for stimulation might be an impingement on the moral rights of the staff. In this equation, the staff’s right to be sheltered from any engaging in any part of the lead-up to sex/masturbation or the detritus from its aftermath overrules any right on the part of the disabled person to have sex or masturbate.

Matters regarding sexuality are very different across the Øserund Sound in Denmark. Debate about the right to sexuality occurred in the 1970s and 1980s, and by 1989 the Danish Board of Social Services produced Guidelines about Sexuality—Regardless of Handicap in 1989, which set parameters on how staff can best appropriately facilitate the sexual life of the disabled people living in their group homes. The Guidelines were clear that access to sex was a right on the part of disabled people. Danish care providers were educated about the need to respect the sexual rights of their clients. The government also set up a system to certify social workers with specialization in sexuality and disability who would be available for consultation.

Kulick and Rydström go out of their way to underscore that there were no circumstances where it would be appropriate for staff to directly masturbate or have sex with members themselves (contrary to some media reports). Instead, the facilitation include setting up of sex toys for masturbation, arranging meetings between lovers who lived in different group homes, providing physical assistance with disrobing or getting into bed, or in some cases, arranging liaisons with commercial sex workers. And, of course, the resultant cleanup after said acts.

This book can be uncomfortable to read at times not because of the stark references to sex and masturbation but because of a translation problem. While Swedes are sensitive to potentially offensive language referring to people with disabilities, Danes are not. This leads to a dilemma for Kulick and Rydström, as the main association for people with cerebral palsy in Denmark is literally the “Association of Spastics” (Spastikerforeningen). In a different example, another one of their Danish informants casually refers to a person with Down syndrome as a “mongoloid.” The authors decide not to clean up this language, arguing:

So much attention is paid to the right language that the right policies or the right forms of ethical engagement can get displaced or forgotten, as more scrutiny is sometimes devoted to how people talk than what they actually say. Talk in these situations can become a substitute for action; or, more accurately, talk can become the site where speakers can congratulate themselves for taking action. (p. 36; emphasis in original)

Kulick and Rydström perceive the academic turn toward “crip theory” and “queer theory” as similar forms of self-centered talk and that as scholars we need to critically engage with the larger issues at hand: “Rather than suggest that the erotic lives of people with disabilities can teach us something novel about ourselves, our society, or about sex, therefore, the argument we pursue in this book focuses on ethical engagement and responsibility” (pp. 16–17).

In arguing for this type of engagement and responsibility, this book begins and ends with an extended analysis of Martha Nussbaum’s (2006) capabilities approach to social justice, arguing that a just society would be one that allowed people to flourish as much as possible and to the best extent of their capabilities. An unjust one would be one that did the opposite—one that restricted people and put false limitations on their capacity for fulfillment. It is here that the elusive language of the title makes sense—Sweden’s political philosophy centers on disengagement and avoidance, even at the expense of committing people to a lifetime without any intimate contact. Denmark is the opposite, invoking engagement in human intimacy and needs, even with all of the messiness that this entails.

This book is overtly political. Although both coauthors are Swedish, they clearly find the situation there intolerable and look to Denmark as offering the progressive and ethical solution. While the book is not without its own problematic lacunae (gender as a critical category of analysis is lacking, with a focus mainly on men and their needs), the book overall is a critically important intervention in both disability studies as well as sex and sexuality studies. The authors make no assumptions about the readership, except that they have a willingness to engage with these issues. 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.

Reference Cited
Nussbaum, M.
2006 Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: Harvard University Press.

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