- Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement by Don Kulick and Jens Rydström
Don Kulick and Jens Rydström's Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement is one of the most exciting books to emerge in recent years engaged in a thick consideration of sex and disability. Without question, Loneliness is the single most sustained consideration of sex and disability attuned to how meanings and practices emerge in specific locations, based as it is on prolonged historical and anthropological work in Denmark and Sweden. Kulick and Rydström essentially set themselves the task of understanding why the sexual situation for disabled people is so very different in the two locations: in Sweden, many disabled people's sexual access is actively negated and blocked, while in Denmark, even for those who need assistance with sexual practices (the main group under consideration in Loneliness), sex is acknowledged, arguably celebrated, and facilitated.
The historical component of Loneliness looks back to shifting attitudes toward disability in both countries beginning in the 1950s, when something [End Page 382] called the "normalization principle"—the idea that disabled people's lives should be as "normal" as possible—took hold (40). The book overviews two important conferences in 1966 and 1967 that put the topic of sex and disability into broader conversation, as well as the development of a radical disability movement in both locations over the course of the 1970s. The book's careful survey of the disability movement in both countries from the 1950s to the present positions it as a history of comparable importance to the field as Susan Schweik's The Ugly Laws: Disability in Public and Douglas Bayton's Forbidden Signs: American Culture and the Campaign against Sign Language. The anthropological component of Loneliness and Its Opposite is based entirely on fieldwork carried out in Denmark, where Kulick spent time in three Danish group homes with residents, sexual advisors, and other care workers. This fieldwork included extensive conversations about sexual desires, practices, and access, with access referring to the ways in which residents, advisors, and workers communicated together about how a range of sexual experiences might be actualized for those living in the group home. Fieldwork was carried out in Denmark, where sexuality and sex for disabled people are discussed and assisted; the original plan was to carry out similar fieldwork in Sweden but the researchers discovered that there was not a single group home that remotely paralleled what they were finding in Denmark.
In 1989, a document titled Guidelines about Sexuality—Regardless of Handicap was issued in Denmark. For Kulick and Rydström, the Guidelines both reflected Danish openness toward disabled sexuality (an openness that had developed over the previous three decades) and provided advice for moving forward, considering how those working with disabled people might facilitate assistance, both in relation to masturbation and to sexual encounters with others. The Guidelines served as a road map for concrete action in Denmark, making sexual experiences (or conversations about and toward sexual experiences) possible for those disabled people who needed assistance. The Danish openness codified in the Guidelines and documented in Loneliness contrasts completely with the dominant Swedish attitude, which the authors sum up using two Swedish mottoes: "Don't wake the sleeping bear" and "If I haven't done anything, at least I haven't done anything wrong" (23). These mottoes reflect the Swedish aversion to difficult conversations about disabled sexuality and (even more) to the idea that disabled people might be assisted with sexual experiences. Kulick and Rydström's project is ultimately to weigh the historical material, anthropological observation, and assessment of the current situation in Sweden and Denmark to offer a model for, as the subtitle suggests, ethical engagement with sex and disability. The "ethics of engagement" [End Page 383] (which is particularly fleshed out in their solid final chapter) is based on social contract models of justice, especially as those models have...