A sociological approach to acquired brain injury and identity

In 2003, at the age of 21 whilst studying physiotherapy, the author sustained a severe traumatic brain injury and spent the next eight months in hospital neurological departments and then four years recovering and relearning basic motor, survival and social skills. Following rehabilitation, he returned to academic study and subsequently gained a doctorate using his own experiences to analyse the identities of male adults who have sustained acquired brain injury (ABI). Consequently, Harvey writes A Sociological Approach to Acquired Brain Injury and Identity drawing on a range of rich and valid experiences as an academic/researcher, a provider of rehabilitation services and a ‘brain injury survivor’. As the introduction notes, the aim of this book is to see whether studies of identity following ABI can inform debates surrounding definitions of disabled people, and to determine ways in which the experiences of survivors can add to existing literature regarding rehabilitation. This is an ambitious task but one which is achieved in this readable and humane account of ABI and its consequences.

Divided into seven chapters, this short book commences with a clinical introduction to ABI and rehabilitation. This chapter is a gateway to a number of broader discussions and provides a useful contextualisation, especially for those unfamiliar with the often contested landscape of ABI, regarding the different types of brain injury and some of the issues surrounding the provision of rehabilitation. The next chapter is perhaps the most interesting as Harvey uses his own experience to theorise about identity (re)construction following ABI. This is, however, much more than a narrative account as it enables the author to make a number of important sociological observations. For example, the perhaps obvious point that ‘rehabilitation’ and identity (re)construction should not be viewed as a fixed and static activity that occurs within a medicalised arena but encompasses the ordinary and the mundane, such as attending football matches or going to the shop to buy a pint of milk. It also recognises the limitations of first-hand accounts and the many ethical and practical problems of gaining consent from those with ABI, and asserts the need for a nuanced approach to research which acknowledges the heterogeneity of brain injury survivors and their experiences. This point is given further emphasis in the next chapter which introduces six survivors of brain injury who are also participants in Harvey’s research, and gives them an opportunity to tell their story.

Harvey uses these accounts to analyse the operation of power and the powerlessness of the survivor using, in part, a Foucauldian lens, but touching on other theoretical ideas as well. This analysis is particularly pertinent to contemporary disability studies as it offers a glimpse into the operation and use of power in settings which promote ‘rehabilitation’, potentially defined as the restoration of deviant bodies to meet perceptions of normality. In this section, survivors talk tellingly of their search for respect and being treated as equals or participants in their treatment/rehabilitation by health care professionals, and how this is integral to their recovery. This is particularly important in the early stages of their injury, often a time of great stress and vulnerability, when their futures are far from certain.

Harvey moves on to provide a critical and invigorating analysis of the notions of ‘dependence’, ‘independence’ and ‘interdependence’ in the rehabilitation and lives of people with ABI. As social science and disability studies recognise, these terms are powerful yet contested, and subject to examination from a range of different theoretical and practical positions. Harvey does not shy away from a critical examination and uses a range of theorists to support his analysis. For example, he refers to the work of Braidotti (2011) to argue that all life is experienced as a transition, a perpetual journey of realisation and ‘becoming’, and therefore to view ABI survivors alone as moving from dependency to independence is inaccurate and de-humanising. He further argues that rehabilitation is not a linear, chronological process but is a messy, disordered phenomenon which is far more than a means of achieving independence; it is a (re)construction of identity. Often, this (re)construction is best aided by events which happen long after the ‘patient’ has been discharged from the rehabilitation process and ceases to be a ‘patient’. For example, gaining employment, establishing intimate relationships or starting a family. Crucially, this normative process is aided by collaboration with a range of people such as friends, families, support groups and others who perhaps unconsciously aid the ABI survivor to (re)construct their identity. As part of this transition, ABI survivors often move from being recipients of care and support to being providers of services particularly to other people who are commencing their rehabilitation.

In the conclusion, Harvey seeks to synthesise and bring together the disparate debates he touches on during the course of A Sociological Approach to Acquired Brain Injury and Identity, which is essentially a thematic collection of essays. His final reflections on his own rehabilitation and the journeys of his research participants are both moving and important. His main observations are that ABI has multiple meanings, that any disabling condition impacts for better or for worse on the identity of the disabled person and that it is essential to listen to the accounts of survivors if rehabilitation is to be optimised. He also celebrates the fluidity and uncertainty of life, and the existence of diversity within the experience of disability. This is a humane and challenging account. I thoroughly recommend it.

Ian Mathews
School of Health and Social Care, University of Lincoln, Lincoln, UK
[email protected]