New Directions in the Sociology of Chronic and Disabling Conditions: Assaults on the Lifeworld

Abstract

G. Scambler and S. Scambler ( eds ). New Directions in the Sociology of Chronic and Disabling Conditions: Assaults on the Lifeworld . Houndsmills, Basingstoke : Palgrave Macmillan , 2010 £57.50 (hbk ) 248 pp . ISBN 978-0230222700 The two editors of this book, Graham and Sasha Scambler, have brought together a number of scholars in the field of medical sociology and disability theory to provide and build on a critical review of the sociology of chronic and disabling conditions, as a means of eliciting ‘new directions’ in the field. The collection examines some well trodden areas, including living with and treating chronic illness and disability, doctor-patient encounters and interaction, and the ‘new’ genetics. Among the subjects discussed are: the merits and future of exploring the experience of chronic illness through grounded theory (Kathy Charmaz); medical sociology and disability theory (Carol Thomas); ‘beyond models’: understanding the complexity of disabled people’s lives (Tom Shakespeare and Nicholas Watson); ‘where the biological predominates’ : habitus, reflexivity and capital accrual in the context of Batten disease (Sasha Scambler and Paul Newton); discerning biological, psychological and social mechanisms in the impact of epilepsy on the individual (Graham Scambler, Panagiota Afentouli and Caroline Selai); a framework and exploration, retheorising the clinical encounter: normalisation processes and the corporate ecologies of care (Carl May); chronic illness, self-management and the rhetoric of empowerment (Mike Bury); and understanding and the biopolitics of chronic illness: biology, power and personhood (Simon Williams). The collection examines the ways in which we define, live with, treat and contest the ‘assaults on the lifeworld’ occasioned by enduring illness. The ‘new directions’ title implies a fresh sociological analysis or re-orientation in the field, which is indeed needed. As Julia Lawton pointed out a few years ago in this journal (2003) the study of chronic illness within the sub-discipline of the sociology of health and illness had already become replete with studies of the direct experience of illness. She noted the need for more conceptual and methodological imagination from sociologists. This plea has become particularly pertinent recently as chronic illness and its self-management have become central topics of interest to policy makers. In the light of this policy context and the self-consciousness of sociologists about exploring new approaches to research in the field, the book only offers a little hope. An excellent account of one policy initiative and its global impact is provided by Mike Bury in his chapter on self-management. Bury offers a critical appraisal of the policy emphasis on self skills training programmes for chronic conditions and the emergence of the ‘expert patient’. He places this rhetorical zeal in the policy making process into an international context. Carl May’s chapter on the normalisation process model also presents a useful re-theorising of the clinical encounter, taking us well beyond the re-workings of Parsons to explore the complexity and plurality of managing chronic illness in the contemporary era. However, apart from these chapters I found that most of the book recycled old themes or left the grounds for the plea for new directions clear but not necessarily providing us with the needed re-orientation. For example, some older aspects of the sociology of chronic illness are explored and their limitations exposed well. Charmaz revisits the tenets of grounded theorising, which have underpinned a plethora of studies on the lived experience of chronic illness and disability. She points to the need for grounded theorising studies to link to more structural concerns, whilst illuminating a false boundary between investigations of chronic illness and disability studies. Carol Thomas takes a look at the history of medical sociology and disability theory, and Shakespeare and Watson draw our attention to the ‘complexity’ of disabled people’s lives which they feel is ignored in traditional models. Some of the analysis in the book felt a little dated and certainly lacked the emphases on the ‘new directions’ so tantalisingly prominent in the title. The chapter ’beyond models’ from Shakespeare and Watson really took us no further than work available in the 1980s. It was strong on special pleading but weak on new analytical insights and failed to report work that has emerged in more recent years. For example, research by people with chronic and disabling conditions has been widely incorporated into social science applied research. We can see this now in the contents of journals such as Disability and Society, Social Science and Medicine and Sociology of Health and Illness. These contain some excellent research in this field. In this context of extensive published work in such journals, specific empirical reports as chapters in the book do not make sufficiently novel offerings. For example, an interesting account is provided of the experience and response to Batten disease, applying Bourdieu’s notions of habitus and different types of capital. However, this is not exceptional as a specific empirical study taking us in new directions in the light of the burgeoning journal material just noted. Edited collections are tricky and are now not terribly fashionable for publishers or readers and have little or no punch in research assessment exercises. They require considerable effort in bringing together the right people with the right theme. They are also expensive (at £57.50 could it be anything but a library reference book?). Maybe this book failed to completely work because of a light touch editorial approach which left the shortcomings I note unrecognised. Maybe it simply reflects an academic culture in which our achievements, judged by journal content suggesting some progress, are not being celebrated and old critiques are simply being recycled. ‘New direction’ requires more of the former and less of the latter.

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