By ALEXANDER A. BONI-SAENZ
Review of Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement, by Don Kulick and Jens Rydström
Durham and London: Duke University Press, 2015
Is there a right to sex? Don Kulick and Jens Rydström think that this is the wrong question to ask, given the simplistic answers that it invites and the difficulties in specifying what such a right entails. Yet their book 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.
The authors look to these two Nordic countries because they share many similarities in social welfare systems and history, but notably diverge in their treatment of the sexual lives of people with disabilities. The book’s primary descriptive claim is that “in Sweden, the sexuality of people with disabilities is denied, repressed, and discouraged. In Denmark, on the contrary, the sexuality of people with disabilities is acknowledged, discussed, and facilitated.” (4) Swedish attitudes are characterized by a proverb that came up repeatedly in interviews: “Don’t wake the sleeping bear.” (84) In this context, the bear is sexuality, and the saying reflects both an attitude of risk aversion and a policy of non-intervention. In other words, those who provide care services for people with disabilities simply do not get involved in their sex lives, for fear of being implicated in some form of sexual abuse or harm.
The problem with this posture is that people with impairments often need some form of assistance in order to navigate the world, be it in getting around, getting fed, or getting laid. If the designated helpers refuse to help, then there may be no opportunities for sexual expression. The Danes recognize this fact and have implemented an alternative approach. Two key features of it are the creation of a set of sex-positive national guidelines on sexuality and disability and the formation of a corps of “sexual advisors,” social workers who possess a special certification in sexuality and disability. This concrete guidance and professionalization has led to open discussion and facilitation of the sexual lives of people with disabilities, balancing their needs for sexual expression, privacy, and protection from sexual abuse. This facilitation can take many forms, including providing sex aids to people with severe physical impairments to help with masturbation or providing guidance and structure for the development of romantic and sexual relationships among people with cognitive impairments.
Given the many similarities between these two countries, how did they end up in such different places on this issue? Stereotype provides one answer, as Denmark is considered to be the wild child of the Nordic countries, while the Swedes are believed to be “square.” But the authors wisely refuse to rely solely on stereotype, noting that “it is important to color in the stereotypes and nuance them with content—to ground them in history, politics, and culture.” (219) And ground them they do. Particularly illuminating are their historical analyses of the countries’ political cultures, sexual revolutions and social movements. For example, Swedish disability rights activism of the 1960s was intertwined with a class-based ideology. The capitalist system was seen as responsible for inducing bodily impairment in the population through dangerous workplaces in which workers were routinely injured, and disability discrimination was merely a byproduct of valuing individuals according to their market worth. As a result, “frivolous details like sex, it was generally assumed, would sort themselves out in a politically correct manner after the revolution had triumphed.” (58) In Denmark, disability rights activists likewise had ties to socialist groups but also drew inspiration from the gay rights movement. They appreciated how gays and lesbians were forging a positive group identity through the manipulation of language and sought to emulate that. For instance, phrases like “It’s Good to be Gay” were reconfigured into “It’s Sexy to be Slack” for people with muscular dystrophy. The cross-fertilization between these two movements led to a foregrounding of sexual rights in disability rights activism that was not evident in Sweden.
In addition to these factors, the authors point strongly to Swedish conceptions of individualism and feminism to explain that country’s restrictive approach to sexuality and disability. For Swedes, individualism requires independence from the market and the family. The state plays a large role in freeing individuals from such dependencies, for example by providing health care without regard to employment status or child and elder care services without regard to family status. Contrast this with the American vision, in which dependence on the state is viewed as the threat to individualism and freedom. This Swedish conception of individualism extends to interpersonal relationships as well. Any relationship that demonstrates a power imbalance or a dependence of one partner on the other is not valued or even recognized as valid. Sexual relationships between people with different types of impairments or between a person with impairments and a person without them manifest obvious inequalities, which makes them undesirable from a Swedish perspective.
This account, however, seems not quite right. Why would Swedish individualism not also require state intervention to remedy the dependencies that people with disabilities experience, and that affect their erotic relationships? Without some form of state intervention, the only people with significant disabilities who would be able to experience a sexual life are those fortunate enough to have willing able-bodied partners who can facilitate their sexual expression, or those wealthy enough to travel to neighboring Denmark and take advantage of the legal market in sexual services there. This outcome either enshrines a dependency on the family, which should be anathema to Swedish individualism, or makes a sexual life contingent on economic resources, which should be offensive to Swedish egalitarianism. It is worth noting that Sweden is not otherwise shy about attempts at social engineering. It is the country, after all, that introduced the “daddy month”—a period of parental leave that had to be used by the father or be lost entirely, now extended to three months—as part of a conscious attempt to reconfigure the allocation of caregiving responsibilities within the family. If the state is willing to intrude into areas as “private” as the division of household labor, then it should be willing to provide sexual advisors to people with disabilities, an altogether less invasive intervention. In sum, the Swedish approach seems to be a failure to fully apply Swedish ideals to sexuality and disability rather than a failure of those ideals.
What explains this failure in application? Kulick and Rydström provide an answer: Swedish feminism. Drawing on the scholarship of Catherine MacKinnon, it understands “[g]ender oppression [as] a structuring feature of society . . . and sexuality as a primary means through which such oppression is maintained.” (239) This focus on subordination conceptualizes sex as a site of harm, and sexuality as a site of inequality. The inherent inequalities in the sexual relationships of people with disabilities only exacerbate existing fears about sexual harm. Not only is the solution not to “wake the sleeping bear,” but to slay it in its sleep! Hence the Swedish apprehension about getting involved in or even discussing the sexual lives of people with disabilities.
Denmark, in contrast, is more ideologically diverse in its feminisms, and it encourages a more confrontational style of politics that celebrates dissent. This creates an opening for more sex-positive interventions, but it does not mean that sexual abuse is not a concern. The Danish merely believe that “the most fertile ground for the sexual abuse is a culture that denies the sexuality of individuals with disabilities and refuses to talk about sex in affirmative terms.” (161) Thus, there is ample sex education for people with cognitive impairments about how to say “No” along with training for sexual advisors in how to facilitate positive sexual encounters and to recognize situations of sexual abuse. In fact, the authors note that many Danish care workers are acutely concerned with sexual abuse, as any whiff of a sexual abuse scandal would lead to a public outcry that would jeopardize the sex-positive environments that they have carefully nurtured.
The authors’ primary normative claim is that the Danish model is superior. To justify this contention, they connect the everyday issues of sexual facilitation to broader questions of social justice. The bridge for this connection is Martha Nussbaum’s capabilities approach, which is a fruitful way of analyzing justice in the context of disability. Nussbaum sees justice as a matter of creating the conditions that allow individuals to enjoy a life of human dignity. Such a life, in turn, is constituted by ten fundamental human capabilities, which are opportunities to achieve certain important states of being or to participate in certain types of human activities. Creating these capabilities for individuals may require different levels of societal intervention due to the variation in impairments that exists in the population. Kulick and Rydström argue that three capabilities on Nussbaum’s list—bodily integrity, emotions, and affiliation—create an ethical demand for society to acknowledge and facilitate rather than deny and prevent the sexuality of people with disabilities. In this, Sweden has failed, and Denmark has succeeded.
Beyond this general ethical demand, things get murkier. A strength of the capabilities approach is that it does not dictate specific policies in all domains, which allows countries to vary the ways in which they try to ensure fundamental human capabilities. The authors embrace this indeterminacy, but in doing so they may shield both Swedish and Danish policies from worthwhile substantive critique. On the Swedish side, they insist that that country can adopt a more enlightened attitude towards disability and sexuality while still retaining its prohibition on the purchase of sexual services. This, however, would seem to doom some people with disabilities to masturbation as their only form of sexual expression. Perhaps this is an acceptable outcome because it meets some minimum threshold for the opportunity to be sexual, but many people without impairments would not tolerate masturbation as their sole sexual outlet. On the Danish side, the authors defend the right of care workers to refuse to participate in any sort of assistance in relation to sex, so long as they refer the person requesting assistance to a colleague who feels comfortable meeting that need. But what if there is no nearby colleague who feels comfortable doing so? At a more fundamental level, why should sexual facilitation refusals be permissible when refusals in other areas of personal care, such as cleaning, defecating, or feeding, would be considered noncompliance with essential job responsibilities? Again, such a distinction may be justifiable, and proponents of so-called “conscience clauses” in the United States have made this case in other contexts, but the authors do not provide an argument to that effect.
But perhaps this is not their goal. Kulick and Rydström only wish to detail the state of affairs in these Nordic countries and to break through the code of silence that hinders substantive debate in Swedish discourse and policy on sexuality and disability. They do not want to define the contours of a right to sex. But they have exposed some of the complexities in that task, as it involves conceptualizing sexuality, inequality, the role of the state, and social justice. Showing us the enormity of that undertaking is as important as providing definitive answers to it.
Posted on 18 April 2016
ALEXANDER A. BONI-SAENZ is an Assistant Professor of Law at Chicago-Kent College of Law.
