Loneliness and its Opposite: Sex, Disability, and the Ethics of Engagement, by Don Kulick and Jens Rydström

A powerful book offers profound guidance to navigating a political and ethical minefield, writes E. Stina Lyon

July 30, 2015
Review: Loneliness and its Opposite, by Don Kulick and Jens Rydström

This is a powerful book, sure to make the reader sit up, both intellectually and emotionally, as it considers a subject still largely hidden from investigative scrutiny because of ignorance, anxiety, prejudice and false moralities.

Commendably, the authors and their many interviewees – individuals with serious physical and mental disabilities, personal carers and assistants – approach the issues with clear-headed directness. Don Kulick and Jens Rydström argue for erotic desire and sex as fundamental to human dignity and the fulfilment of human potential – but for many people, sexual experiences cannot be realised without supportive intervention. The ethical and practical dilemmas are many: the blurred boundaries between public and private, social and personal; questions about whose human rights are being exercised, cared-for or carer; positive and joyful acts that risk being seen as abusive or constitute an actual breach of the law; and appropriate responses by institutions in a climate when most things, rightly, are open to public scrutiny to counter maltreatment, yet the well-being of all parties in such interactions requires intense privacy. But brushing such difficulties under the carpet is not an option, say the authors, as they throw open a debate about how better communication between everyone involved can clarify the processes and practices by which mutually agreed and supportive human assistance can be provided.

The book’s theoretical framework is comparative. The marked differences in approach in the Scandinavian countries from which most of the evidence is drawn are interestingly discussed. Surprisingly, evidence from a variety of sources shows how Denmark has come to develop what might be called a more liberal approach to sexual assistance within the confines of public care than Sweden, traditionally viewed as the “sexually liberated” nation. These countries, seen as collectively participating in the Nordic model of social democratic welfare, are normally treated together. But the authors highlight the significant impact of deep cultural differences, particularly within Left and feminist traditions, on the treatment of sexuality in public policy, both generally and with respect to individual assistance. Their detailed explanations point to the debate within Scandinavian cultural history and political studies about the multifaceted nature of slowly evolving social democracies. More relevant, however, is the comparative discussion itself, which highlights the historical, political and ideological dimensions of what is understood as human rights, individual autonomy and dignity, and the varying degrees to which human differences are “medicalised”.

This book is dedicated to “those who make love and erotic relationships possible”. Given the huge time constraints facing family carers and professional practitioners (and the complexity of the issues), one wishes for a shorter and more focused version of this inspiring book – something between simplistic and contradictory practice “handbooks” and this long, analytically dense treatise. Loneliness and its Opposite will make highly rewarding reading for academically oriented insiders and various feminist, queer, disability and welfare state theorists, but for those with less time to read who engage on a daily basis with the theoretical and ethical arguments surrounding the issue of sexuality and the realisation of human rights, a more concise version would be valuable. Let us hope the authors get involved with producing one.

E. Stina Lyon is professor emeritus of educational developments in sociology, London South Bank University.

Loneliness and its Opposite: Sex, Disability, and the Ethics of Engagement
By Don Kulick and Jens Rydström
Duke University Press, 376pp, £66.00 and £18.99
ISBN 9780822358213 and 8336
Published 23 March 2015

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