loneliness and its opposite: sex, disability, and the ethics of engagement
Don Kulick and Jens Rydström, Duke University Press, Durham, NC, and London, 2015, 375pp., ISBN: 978-0-8223-5821-3, $94.95 (Hbk), ISBN: 978-0-8223-5833-6, $26.95 (Pbk)
Emerging out of a collaborative research project to comprehend how it is that ‘people with significant impairments actually experience and manage their erotic lives’ (p. 13), Don Kulick and Jens Rydström’s book is a welcome addition to a burgeoning area of study that seeks to further advance the sexual lives of disabled people.
Based on ninety-eight interviews with disabled people, their parents, authorities on sexuality and disability (including academics, sexologists, occupational therapists and sexual advisors), sex workers, personal assistants and group-home workers, Kulick and Rydström explore how the sexuality of disabled people is expressed and recognised.
Focusing on the lives of disabled people who primarily live in group homes in Denmark and Sweden, and who have limited or no mobility in their limbs, Kulick and Rydström’s book details the ways in which the erotic lives of disabled people are ‘either impeded or facilitated by people who work with and care for them’ (p. 3).
Throughout the book, the authors contrast the ways in which sexual expression and facilitation occur in Denmark and Sweden. Even though these two Scandinavian countries have much in common as ‘prototypical welfare societies’ that are portrayed as ‘sexually progressive’ and ‘at the forefront of rights for people with disabilities’ (p. 3), the authors argue for differences between them, and contrast Danish ‘best practices’ of facilitating the erotic lives of disabled people with the Swedish policies and practices that limit the sexual lives of disabled people, marking these limits as avoiding ‘the difficult issues of facilitation and practical help’ (p. 52). While tracing out the historical and sociopolitical contexts that differentiate Swedish and Danish policy frameworks, the authors also outline the best practices in the Danish case that aid disabled people in positioning themselves for sex with another person, aid in masturbation or aid in acquiring a sex worker, particularly in the context of disabled people living in group homes.
This book has many implications for feminist scholars, particularly those interested in disability, sexuality, agency, sex work, labour and policy. Across seven chapters, the authors delve into the difficult practical issues of communication, desirability, worker protection against sexual harassment, privacy, surveillance and sexual education, particularly for disabled people with intellectual disabilities. Importantly, Loneliness and its Opposite shows exactly how the political struggle to decriminalise sex work is, in so many ways, entangled in the struggle for disabled people to have rich erotic and sexual lives.
While it has much to offer both feminist and disability scholars, one of the more contentious aspects of this book is its insistence that cultural studies-based perspectives, such as that of crip theory, offer nothing ‘new to approaching or understanding the actual lives (as opposed to the cultural role and meaning) of people with disabilities’ (p. 15). That is, the authors argue that crip theory does not adequately engage with significantly disabled people, such as those ‘who have little or no verbal language, who do not engage in cultural critique or political activism, who live in institutions or group homes, who require a great deal of assistance to manage basic activities like eating or communicating’ (p. 15). These disabled people, the authors claim, ‘produce no cultural artifacts, they stage no protests, they make few or no demands, they write no poems, they throw no balls. They are passive …’ (pp. 15–16). Interestingly, while the authors focus on these ‘passive’ disabled people, they nonetheless mobilise such cultural studies-based perspectives, such as that of Mollow (2012), and throughout the text mark precisely the ways in which significantly disabled people are not passive but make demands and produce artefacts.
Furthermore, the authors’ reductive contrast of disability studies in North America and Britain in which the former is about ‘representation and cultural studies’ and the latter is committed to ‘social relationships and social life’ does a disservice to the multifaceted and ever-expanding forms of both studying and producing disability across the globe. It is unclear to this reviewer why the authors sought to dismiss certain scholarship in these ways, as it serves to detract from their rich research findings.
All told, 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.