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Sexuality and fertility issues in health and disability: from early adolescence to adulthood

Lucia Winters, Development Officer at the Council for Disabled Children, UK, reviews Sexuality and fertility issues in ill health and disability: from early adolescence to adulthood edited by Rachel Balen and Marilyn Crawshaw.

photo courtesy of Bucks Health

In this book Rachel Balen and Marilyn Crawshaw bring together personal, professional and academic perspectives from a variety of disciplines to examine the impact of illness or disability on young people’s sexual and fertile identities.

This multi-disciplinary approach is needed to study a subject that, to understand and deal with fully, needs to be examined from a range of perspectives. From detailed chapters about the medical and scientific aspects of compromised fertility in adolescence, to ‘voices’, where the reader learns about one man’s experience and how he found catharsis through art, the subject is covered comprehensively.

Medical developments mean that people are surviving to reproductive age now who would not previously have survived. This brings with it a whole host of new moral and ethical questions and dilemmas for young people and society as a whole. In the chapter outlining these main ethical considerations it is made clear that this is an area where there remain a great number of, as yet, unexplored issues. Because it is such new science and technologies that are being used, the consequences, and therefore the associated possible benefits and risks, are as yet largely unknown.

The issue of the added confusion and anxiety that growing up with such an illness or condition can bring to the already difficult time of adolescence is covered well in this book. How it feels for teenagers to grow up with a physical impairment or health condition, how this sets the young person aside from their peers at a time when assimilation and acceptance is the main aim, is dealt with sensitively.

Placing, at the front of the book, an article about the meaning of parenthood for 10–16-year-olds, and how we have, at this age, expectations that we will have a family and societal expectations are that we will have a family, prepares the reader for understanding how traumatic it can be to learn that you may never be able to have a family.

In the chapter about young people’s understanding of what infertility is, it is made clear that young people often do not have much understanding of what it means. On being told that they may be infertile, young people are forced to think about something that they may not have previously considered or been aware of. This could add feelings of confusion and bewilderment, and the feeling of loss of control over their body – both at present and in the future. The use of words such as fertility medicalises the body and process, and must lead young people to feel that their body no longer belongs to them.

In the introduction, readers are reminded about the young people who are the focus of this book: “their dreams and aspirations, contradictions and confusions, ups and downs need to be firmly located within the normality of their life stage”. And throughout this book, even when technical medical details are being discussed, young people and the reality of what it means to them are always considered. As well as moving descriptions from young people of living with conditions that affect fertility, the book contains poignant stories from parents who have had the benefit of time to come to terms with it and reflect on it, which makes this book an invaluable resource for parents in similar situations. Professionals working with adolescents and young adults will also find this book a rich source of insights, information and guidance.

Sexuality and fertility issues in ill health and disability: from early adolescence to adulthood edited by Rachel Balen and Marilyn Crawshaw. 2006, London: Jessica Kingsley. ISBN 1  84310 339 7. Price: £25. Available from www.jkp.com.

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