The End of Stigma? Changes in the social experience of long-term illness . Oxford : Routledge 2009 £21.99 xi + 128 pp . ISBN 978-0-415-37625-9 .( pbk ).
In her latest work, Gill Green offers us a well thought-out exploration of stigma, and asks whether it is still a relevant concept for use in understanding the experiences of people living with long term illnesses in the 21st century. We are witnessing major changes in western society – people live longer and are more likely to experience one or more long-term conditions. This has led to what Green describes as a ‘continuum’ (between long-term illness and health) through which ‘we will all travel’. She argues that with more sophisticated ways of managing and delaying the impact of long term illness, the distinction between the ‘ill’ and the ‘well’ is less clear cut and less meaningful – and that this could mean less potency for the concept of stigma associated with illness.
The first two chapters of Green’s book contain a refreshingly clear consideration of the theoretical underpinnings of the concept of stigma. Although the terms ‘disability’ and ‘long term illness’ are collapsed into one broad category, she provides a convincing rationale for doing so. The following three chapters each focus on a particular aspect of the potential challenges to stigma – pointing to changes in technology, personal understanding and organisational changes – and in each case makes effective use of a case-study of a long term illness to support her arguments.
Green uses the case of people with HIV-positive status as the window through which to examine how technological advances have challenged stigma and stigmatization. She suggests that through the increasing availability of antiretroviral therapy – which has led to those who are HIV-positive living longer and healthier and so more able to return to usual daily activities – this has impacted on the experience of stigma, largely through individuals being able to conceal their condition and ‘pass’ as ‘normal’.
Green goes on to consider whether personal challenges to stigma have impacted on the experience of stigmatisation, through the example of substance misuse. As Green herself argues, this is an appropriate case-study to use, given that substance misuse is often considered to be a matter of personal choice, and encapsulates ‘deviant’ behaviour. Finally, she addresses organisational challenges to stigma, using what she calls the most stigmatised of all long term conditions – that of mental illness. This is another very relevant case-study which Green has used appropriately to tease out the impact of organisational challenges to stigma on the lives of individuals with this long term condition.
In the final chapter of this book, Green discusses whether, given the empirical evidence she has put forward, the concept of stigma associated with long-term illness remains applicable today. This is an engaging chapter which clearly sets out the arguments for and against the utility of this concept for understanding the experience of long-term illness. It nicely links points on the stigma trajectory with the evidence she has gathered. Technological advances might well have improved the lives of many people with HIV-positive status, but this has occurred through concealment and allowing people to ‘pass’ as ‘normal’, rather than by actually challenging the stigmatising values and prejudices of wider society. Green does, however, acknowledge that technological advances have at least handed back (in some situations) control to people with particular conditions such as HIV, allowing them to decide when and where to disclose their health status. This may be the case for those whose condition is hidden or not obvious, but for individuals who cannot hide their condition or disability this is simply not possible. The personal challenge to stigma, Green argues, has had a major impact on those living with long term illnesses, and has provided a serious alternative to the ‘personal tragedy’ model often ascribed to the experiences of people with long term conditions. Organisational challenges to stigma have been many and Green clearly articulates some of the key ways through which these challenges have been channelled, primarily through widening participation and social inclusion.
The title of this book, and the way the contents are set out, make the reader want to get to the end to find out the answer to the question – is this the end of the concept of stigma and is it no longer useful as a way of helping us to understand the experience of discrimination and social exclusion on the basis of a long term condition? Green brings the theoretical arguments surrounding the experience of stigma in people with long term illnesses right up to date. She makes excellent use of empirical research – both her own and other peoples’– to support and contextualise her arguments. This is a very useful book for a broad range of social science students as well as those interested in the experience of long term illness in the 21st century. I would highly recommend it.