A Sociological Approach to Acquired Brain Injury and Identity

Jonathan Harvey

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781317186694
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

Inspired by the author's personal experience of sustaining acquired brain injury (ABI), this path-breaking book explores the (re)construction of identity after ABI. It offers a way of understanding ABI through a social scientific lens, promoting an understanding that is generated through close engagement with the lives and experiences of ABI survivors.

The author follows the everyday experiences of six male survivors and critically investigates their identity (re)construction after their ABI. As well as demonstrating identity (re)construction after ABI, the experiences of the participants allow the reader to investigate neurological rehabilitation from their perspective. This book suggests that rehabilitation after ABI is often a continual process that extends beyond the formal, medically prescribed period. It also shows that identity after ABI is often (re)constructed in an unpredictable way; a way that emphasises the importance of reciprocal support and the uncertainty of future life.

A Sociological Approach to Acquired Brain Injury and Identity

is essential reading for academics and students from a range of social scientific disciplines with an interest in biographical or ethnographic research methods. This book offers a social scientific view of rehabilitation and as such is also essential reading for academics, students and professionals with an interest in health and illness, particularly neurological rehabilitation and brain injury rehabilitation.

1 Introduction

This book is concerned with the lives of acquired brain injury (ABI) survivors. The inspiration behind this book came from my own personal experience of sustaining a traumatic brain injury (a common form of acquired brain injury) in 2003. Rather than being about ABI in isolation, this book explores the lives of ABI survivors. Crucially, this book seeks to offer a way of understanding brain injury through a social scientific lens. Thus this book promotes an understanding of ABI that is generated through close engagement with the lives and experiences of ABI survivors. Throughout the book I draw upon the experiences of six males who sustained ABI between the ages of 18 and 30 to explore how their identity has been (re)constructed following ABI. An exploration of the (re)construction of the participants’ identity following ABI has also enabled a critical interrogation of the process of neurological rehabilitation through the lives of ABI survivors. Together with the experiences of the participants, I explore my own identity (re)construction following ABI with a particular focus on how these experiences have shaped this study. This book uses critical social scientific theory as a lens through which to view the process of identity (re)construction following ABI.

In seeking to understand the identity (re)construction process after ABI, this book explores dis/ability, difference and the process of research itself. In widening my analytical lens to promote a critical social scientific understanding of the lives of ABI survivors and the process of identity (re)construction following ABI, I seek to add a further dimension to research concerning medical ‘conditions’ such as brain injury. Therefore, this book navigates across and between the medical and social sciences. In striving to understand ABI from a social scientific perspective, this book seeks to be truly nomadic and resists static categorisation in order to encourage further dialogue across and between the stark borders between the medical and social sciences. The introduction of interdisciplinarity into conversations regarding phenomena such as brain injury enables cross-fertilisation between topics such as medicine, rehabilitation, psychology, disability studies, sociology and research method/ology to name but a few. This interdisciplinary approach allows a far more detailed and sophisticated approach to the study of ABI. I seek to draw from each of these disciplines to reach towards a more wholesome understanding of ABI. It has been stated that an interdisciplinary approach enables sophisticated engagement with impairments and those that experience them (Bolt 2006; Goodley 2007a; 2011; Meekosha and Shuttleworth 2009; Smith 2010). Despite many authors highlighting the benefits of an interdisciplinary approach to the study of disability, many studies continue to promote a view which seeks to attribute a fixed and single topic to phenomena (Bolt 2006; Goodley 2007a; 2011; Meekosha and Shuttleworth 2009; Smith 2010). This book seeks to follow these calls for the interdisciplinary study of disability and offers an interdisciplinary approach to studying the lives of brain injury survivors. However, the book does not seek to present a standardised, ‘correct’ way of researching ABI. Rather, I aim to offer a way of researching ABI which does not accept taken-for-granted ‘truths’ regarding ABI, and to promote a complicated interrogation of the identity of each individual brain injury survivor. In the discussions regarding the clinical literature on ABI and those regarding ABI and disability identity, it is clear that studies that seek to examine ABI or indeed neurological rehabilitation from a critical, social scientific perspective are rare (Gibson and Teachman 2012). Furthermore, studies which seek to represent experiences of ABI survivors are also rare (Lorenz 2010; Sherry 2006; Stewart 2014).

Due to my experience of ABI, I am able to add further unique insights on discussions regarding ABI. Before I sustained my ABI in 2003, I was a trainee physiotherapist. An integral part of my training was an engagement with clinical placements, where I gained first-hand experience of physiotherapy service provision. I am therefore able to examine ABI and neurological rehabilitation after ABI from three distinct perspectives. I am a person who is familiar with debates regarding ABI and neurological rehabilitation from the viewpoint of the service provider, the recipient of services, and also a social scientific researcher. As a result, my interpretations regarding brain injury cannot be said to be those provided solely by a service provider, a person who has experienced ABI or a critical social scientist. Rather, the conclusions I am able to draw from this study are gained from my involvement in all three of these arenas. Each of these three strands of my subjectivity play an important role in any assertions I am able to make. This renders a thorough investigation of my own role in the research essential, as well as a discussion regarding some of the ways I may have affected the data. My personal experiences are explored in a later chapter. As I take insight from a number of competing disciplines, there is an inevitable variation in the language used in existing literature. As such, I now turn to an explanation of some of the language used within this book.

A note on language

At the heart of this book lies the notion that it is the person who has sustained ABI, rather than the label ‘brain injured person’, ‘patient’ and so on, that should be of concern to service providers, and researchers. This notion has had important implications for the language I have used throughout this book. I avoid terms such as ‘patient’, ‘service user’ or ‘client’ as these terms seem to underestimate the complex nature of brain injury and deny the uniqueness of the person who has sustained ABI. Furthermore, this book seeks to explore the identity of ABI survivors through a critical, social scientific lens. Critical social scientific theory highlights the complex nature of identity (Gibson et al. 2012; Goodley 2013a). Following these observations, this book aims to understand the complexity of the participants’ identity rather than defining ABI survivors in terms of their medical ‘deficiency’. I believe that the use of words such as ‘patient’, ‘service user’ and ‘client’ only serve to reinforce the identification of ABI survivors in terms of their medical ‘deficiency’. However, largely due to the universality of the word ‘patient’ in medical discourses, where unavoidable I reluctantly employ it.

In addition, throughout this book I use the phrase ‘person who has sustained ABI’ rather than ‘person who has suffered ABI’, as the term ‘suffer’ (and its derivatives) imply an overly melancholic conception of ABI and an unproblematised, causal relationship between ABI and suffering. I also use the term ‘brain injury survivor’ as this is the phrase preferred in the vast majority of literature that seeks to explore ABI from a personal perspective (Lorenz 2010; Sherry 2006). However, I recognise that the language used to talk of disability and impairment such as ABI is always in contestation and never static (Sherry 2006). Within this book I use the terminology that was preferable for my participants.

When referring to the identity of brain injury survivors, I use the term (re)construction. There have been examples of research that highlights the way identity after ABI is wholly transformed (Nochi 1998). Within such research, the process of reconstructing a wholly new identity is important, with the old identity being referred to as ‘the lost self’. In opposition to this, there are examples of research that seek to emphasise the post-injury experience through notions of stability and moral growth (Gelech and Desjardins 2011). I use the term (re)construction throughout the book to acknowledge the presence of this ongoing discontinuity between the ways in which identity has been conceptualised after ABI. Studies which seek to represent experiences of ABI survivors are also rare (Lorenz 2010; Sherry 2006; Stewart 2014). I now continue with an explanation of the aims which guided the research.

The aims of this book

After exploring existing literature regarding the identity of disabled people, people in receipt of rehabilitation and ABI survivors, I find there appears to be a lack of evidence which explores the long-term daily details of people who have sustained ABI. Indeed, it has been asserted that there is a paucity of research in the area regarding the long-term activities of a person following ABI (Lorenz 2010; Sherry 2006). In addition, it has been noted that at present there is a lack of critique regarding the neurological rehabilitation process (Gibson and Teachman 2012; Gibson et al. 2012). In particular, there is an absence of critical research from the perspective of the person in receipt of rehabilitative services (Sherry 2006). Considering these gaps in literature, this book seeks to explore the lives of ABI survivors from a social scientific perspective. In so doing, the book investigates the (re)construction of identity of ABI survivors, while offering a critique of neurological rehabilitation from the perspective of the ABI survivor. Consequently, this book seeks to address the following questions:

• In what ways can a social scientific exploration of the lives of ABI survivors add to the existing literature regarding disability identity?

• What can an exploration of the lives of ABI survivors add to the existing literature regarding neurological rehabilitation following ABI?

In addition to the above aims, this book also seeks to explore the method/ological approach that I took to the research, considering my position as a brain injury survivor. The method/ological complexities inherent within this study are addressed in a later chapter. However, the study has an important method/ological aim in addition to the theoretical aims set out above. Within the larger aim of exploring ABI and ABI rehabilitation from a social scientific perspective, this book seeks to address:

• In what ways has being an ABI survivor and volunteering in an ABI support group impacted on the research?

Contemporary social scientific theory and disability research

This book sets out to view both the lives of ABI survivors and neurological rehabilitation after ABI through a critical social scientific lens. Historically, disability has been seen as a problem or deficit that resides in the individual person and was framed as a problem that needs to be overcome by that individual (Oliver 2004). This was fuelled by the so-called medicalisation of disability, which individualised impairments and caused a great deal of dissatisfaction (Oliver 2004). Disabled people and their organisations refused to continue to accept being identified according to their various impairments, wishing to end the ubiquitous presence of medical discourses in their lives. As is pointed out by Barnes (2012), a radical departure from the medical conceptualisation of disability was to fuel a whole host of political transformations. In short the focus was to be transferred to the achievement of a fairer and just society which accounted for all people, both non-disabled and disabled (Barnes 2012). In accordance with the medicalisation of disability, research into brain injury is predominantly conducted within the medical arena (Sherry 2006). Such studies are often conducted within clinical settings and appear in journals such as Brain Injury, The British Medical Journal, Disability and Rehabilitation, and Neurology, amongst others. These clinical research studies are often grounded in the experience of medical professionals such as neurologists, neurosurgeons, psychologists, and so on. This research is useful and indeed worthwhile in many ways, not least in providing a resource to clinicians who help people with the effects of brain injury. The abundance of these studies, together with the lack of investigation into the (re)construction of identity amongst ABI survivors, has provided an ideal breeding ground for the growth of the dominant societal belief that brain injury equates to damaged person (Sherry 2006). This may well be due to the uncritical acceptance of ABI being a wholly medical issue. As such, medical accounts have become the dominant discourse in brain injury research and practice. These narratives have been said to frequently divert attention from individual experience, and as a result to close down opportunities for individual growth in homogenising personal experiences of ABI (Gelech and Desjardins 2011; Richards 2008). At the same time, an approach which places too much emphasis on the existence of disabled people such as ABI survivors as a tightly bound collective, who do not differ according to impairment factors, has also been criticised (Shakespeare 2006). Such a conceptualisation is provided by the social model of disability and a consideration of the role of society in disabled people’s lives.

Although the increasing focus on the role of society in a consideration of disabled people’s lives is largely accepted (Barnes 2012), others have stated that critique is necessary in all spheres of life (Salih and Butler 2004). This train of thought would suggest that exchanging one dominant discourse (medicine) for another (socio-political) in an uncritical way would be a sideways step (Shakespeare 2006; Shildrick 2012). Suggesting that certain perspectives are in some way exempt from being critiqued could also be seen as counter-productive to the creation of ‘new possibilities’ (Salih and Butler 2004: 331) especially concerning the lives of disabled people.

Disability and practices associated with it, such as rehabilitation, have been said to illuminate and put into practice social theoretical ideas which contribute to the contemporary understanding of life (Goodley et al. 2012). In addition, the work of others in research concerning disability is incorporating critical theory (for example: Gibson 2006; Gibson and Teachman 2012; Gibson et al. 2012; Goodley et al. 2012; Goodley 2013a; 2013b; Shildrick 2012).

It would seem then, that there is a clear proliferation of the use of critical social scientific theory when seeking to understand the lives of disabled people. Indeed, the experiences of disabled people are far more resonant and impactful when they are contextualised through a social theorisation (Sherry 2006). Following this trend, this book explores how the work of social theorists Gilles Deleuze and Félix Guattari (Deleuze and Guattari 1987 [2004]) and Rosi Braidotti (Braidotti 1991; 2003; 2006; 2011a; 2011b; 2013) may provide a prism through which to view the identity and the rehabilitation of ABI survivors. The work of Deleuze and Guattari and that of Braidotti have previously been used as exploratory frameworks for research connected with other impairment labels. Deleuze and Guattari’s (1987 [2004] work promotes an understanding of rehabilitation as a non-linear intervention that thrives upon the uncertain potential of the future as it unfolds. I will use the concept of the ‘rhizome’ that was used by Deleuze and Guattari in their representations of identity. The rhizome is a naturally occurring, live, organic organism (Simmons et al. 2008). It is a structure which is found in plant life. Deleuze and Guattari describe it as a structure which has ‘neither beginning nor end, but always a middle (milieu) from which it grows and which it overspills’ (Deleuze and Guattari 1987 [2004]: 23).

I introduce this concept as being relevant to the lives of my participants as it represents the removal of fixed points of reference. It adds to my (re)presentation of the lives of people who have sustained ABI by enabling me to remain open to engage with the heterogeneity and constant development of people (Goodley 2007a; 2007b) as well as critically examining whether neurological rehabilitation is a long-term concept, which may not necessarily occur only in fixed places and at fixed times. The Deleuzoguattarian concept of the rhizome was central to a study exploring opportunities for inclusion amongst children with the label of profound and multiple learning difficulties (PMLD) (Simmons et al. 2008). The application of fluid rather than fixed, singular identities was said to have huge implications for how society interprets the life of a person with such a label, since these labels were not understood as permanent and inescapable but instead as malleable and situation-specific:

If disability is conceptualized in this [fluid, rhizomatic] way, then implications for inclusion emerge, especially if we challenge the arborescent, binary models that dominate special educational thinking (inclusion/exclusion, able/disable, etc.).

(Simmons et al. 2008: 739)

Margrit Shildrick (2012) uses ‘Deleuzoguattarian’ thoughts to demonstrate how the very existence of disabled people questions the idea of the self-autonomous ‘normal’ person through their non-normative embodiment. The ability of the parents of disabled children to ‘defy categorization’ (Goodley 2007a: 146) was the focus of another Deleuzoguattarian-themed paper which utilised the concept of the rhizome. This study of the lives of the parents of disabled children resulted in a questioning of the static fixing of (disabled) people and their allies (Goodley 2007a: 157). Rather importantly, the ‘rhizome’ was used to invite us to consider the constant development of identity (Goodley 2007a). Any entity in its fluid or rhizomatic form does not have a definite end point. Following these assertions, the way that binary labels such as abled/disabled are used in the lives of people who have sustained ABI is worthy of exploration.

The concept of the rhizome is relevant to the study of the (re)construction of identity of ABI survivors as it implie...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword
• 1. Introduction
• 2. A clinical introduction to acquired brain injury and rehabilitation
• 3. Mapping the terrain: Theorising my identity (re)construction after ABI
• 4. Researching the everyday complexities of the lives of ABI survivors
• 5. Dependence, independence and interdependence in the lives of ABI survivors
• 6. Exploring time in ABI rehabilitation: Towards a rehabilitation imagination?
• 7. Critical reflections
• Index