If I Only Had a Brain

Deconstructing Brain Injury

Mark Sherry

• Verlag: Routledge
• Jahr: 2013
• ISBN:
  9781135495510
• Auflage: 1
• Thema: Medizin
• Thema: Psychiatrie & geistige Gesundheit

This book offers a rich, insider's viewpoint of the lived experience of brain injury. Sherry, a survivor of brain injury himself, uses a cross-disciplinary theoretical approach (drawing upon the social and medical models of disability and combining them with lessons from feminism, queer theory, postcolonial and postmodern literature) to frame an enriching narrative about the lived experience of brain injury.

Chapter One
Introduction

This book began, as most do, with a personal experience. I was crossing the road and was run over. Seriously injured and not expected to live, I began my recovery from my life’s most unexpected and traumatic twist. My brain and body was a mess; I had operations for the next 9 years. In one sense, this book is about one of my injuries—a brain injury. But it is really about far more than that. It is about identities, disability, difference, the public and the private, human variation, and about the complex interaction of biological and social forces. It is about power and oppression, and how people are situated in a complex web of interlocking social positions which rarely makes them a “pure” victim or a “pure” oppressor. My journey back from near death has been well documented, through many news stories in my home country Australia, and I gained a tiny degree of fame through this experience. I soon found myself positioned as a disability rights advocate and hundreds of brain injury survivors around the world began to contact me, sharing their stories, asking about my recovery, and looking for answers. I was asked to write about the collective experiences of people who were in rehabilitation with me, and have written this book in the desire to capture some sense of these people, their dreams and aspirations.

Brain injury involves so many elements, it is difficult to know where to begin. Should I start by talking about what it is like to suddenly and unexpectedly become disabled? Or should I begin by discussing the causes of brain injury, such as the domestic violence that leads to so many brain injuries among battered women and children? What about the difficulties that so many people experience with the activities of daily living—how much emphasis should I put on that? Perhaps I should talk about the way some people are misdiagnosed, labeled as “vegetative” and left for years in nursing homes without proper rehabilitation? And the high levels of brain injury among ethnic minorities and poor people—how can I draw that to people’s attention?

I struggled with these questions for a long time. In the end, I adopted an interdisciplinary approach to the topic. In order to explain what it is like to be disabled, I drew on the disability studies literature. And in order to understand the mechanics of brain injury, I drew upon the medical literature. However, I felt that these two approaches alone would leave my project seriously incomplete. I wanted to expand its scope. Taking inspiration from feminist literature, I wanted to be sure to include the public and the private. I wanted to highlight the sexual dimensions of brain injury, and the effects that brain injury has on intimate relationships. I also wanted to recognize that men and women with brain injuries often have radically different experiences. And when I thought about the uneven distribution of brain injury in the community (certain racial and ethnic groups experience a much higher incidence of brain injury than others), I wanted to examine these dynamics as well. This interest eventually led me to the literature about postcolonialism, which seeks to explain the historical and continuing effects of racism and imperialism among different racial groups.

It should be clear that this is not a regurgitation of the traditional rehabilitation approach to brain injury. There are plenty of books on that subject, and many authors who are far more qualified to speak about it than I am. Instead, in this book I am trying to write a cultural analysis of brain injury, which draws upon the knowledge of people who have experienced brain injuries in order to see what they can teach us all about identity, disability, our sense of self, and our relationships with the world. The approach I have taken towards brain injury has been deeply influenced by the wider literature on disability studies. Linton (1998a:2) defines disability studies in the following way:

Disability studies takes for its subject matter not simply the variations that exist in human behaviour, appearance, functioning, sensory acuity, and cognitive processing but, more crucially, the meaning we make of these variations. The field explores the critical divisions our society makes in creating the normal versus the pathological, the insider versus the outsider, or the competent citizen versus the ward of the state.

Disability studies has been embraced by many disabled people because of the way it draws upon their experiences and emphasizes society’s failure to accommodate their needs. It also challenges the medicalization of disability and critically examines society’s response to an individual’s impairment.

One of the more controversial aspects of my language around disability is the conscious use of the phrase “disabled people” ahead of “people with disabilities.” I am one of a minority of people who prefer this term—in Australia at least. I know that it is very popular in Britain. The reason why “people with disabilities” is popular is because it suggests that people with disabilities are people first, and their “disabilities” come second. The criticism of this argument from disability scholars, however, is that to accept being a “person with a disability” is to accept conditional humanity: granted person-hood on condition that they act as a “normal” person, albeit with an impairment (Michalko, 2002). An alternative terminology, which particularly holds sway in British disability literature, is to refer to “disabled people.” It is suggested that this terminology highlights the oppression experienced in a disabling environment (Morris, 1993). This argument relies on the distinction between “impairment” (bodily difference) and “disability” (prejudicial social reactions to that difference). Among the most progressive elements of the disability movement, “disabled people” is clearly the preferred terminology and I have chosen to use it in this book. However, I also want to register my unease with certain sections of the disability movement who actively police the use of these terms and who are intolerant of others who occasionally use uncommon language. I have wept when I have seen my own work changed, without my consent, so that it conformed to the editorial guidelines of certain disability magazines. For instance, I was asked to write an article on disability hate crimes by the Australian disability publication, Link magazine, only to see my language changed to fit their preference of “people with disabilities” (Sherry, 2003). I simply want to acknowledge that language around disability is always contested and that there are many positions, both within and outside the movement, on this issue. My use of a language which is preferred only by a minority is meant to be deliberately oppositional, in order to promote tolerance of a plurality of viewpoints.

Disability means various things to various people. Legislative definitions of disability have become increasingly important in the context of commodified welfare assistance to disabled people and accordingly have been subject to a great deal of attention and review (for instance, Albrecht, 1992; Albrecht and Levy 1981; Hahn 1986; Pedlar and Hutchison 2000; Priestley, 1999; Stone, 1984). Indeed, these definitions have changed so often that Hahn (1985: 294) said “Fundamentally, disability is defined by public policy. In other words, disability is whatever policy says it is.” Particularly in North American disability studies, disability is often defined by contrasting it to “normality” (Davis, 1995; Russell, 1998; Thomson, 1997a). For instance Davis (1995) argues that social relations which highlight and devalue bodily difference consolidate the “hegemony of normalcy.” He reconstructs disability not as an object of the body but as part of a hegemonic way of thinking about the body and its role in the body politic. The state of “disability,” like that of “normalcy,” is therefore a reflection of biopower. Indeed, Davis believes a “somatic judicial system” enforces the hegemony of normalcy, marginalizing any departure from the goal of a seamless, whole, complete and unfragmented body. Davis (1995: xii) argues that the goal of disability activists has often been “to help ‘normal’ people to see the quotation marks around their assumed state.” Shakespeare (1996: 96) makes a similar point when he comments: “a situation where disabled people are defined by their physicality can only be sustained in a situation where non-disabled people have denied their own physicality.”

The problem with defining disabled people by referring to conceptions of normality is that the disadvantages experienced by people who are labeled “abnormal” do not derive from biology but from implicit social judgments made about certain forms of human variation (Amundson, 2000). So rather than contrast “disability” and “normality,” as many American disability scholars do, I have tended to follow the British model which attaches a more technical meaning attributed to “disability.” In this British literature, the terms “impairment” and “disability” are used fairly consistently: “impairment” is the term used to refer to medical conditions and “disability” refers to the social reactions to impairment, particularly experiences of discrimination, oppression, social exclusion and marginalization (for instance, Abberley, 1999; Ahmad, 2000; Barnes, 1999; Drake, 1999; Marks 1999; Oliver 1996; Oliver and Barnes 1998; Priestley 1999). By recognizing disability as a set of power relationships involving exclusion and marginalization, disability studies makes a parallel with other forms of oppression such as racism and sexism.

Beckett and Wrighton (2000), Garland-Thomson (1997a) and Wendell (1996) are among many scholars who explicitly compare the social construction of gender with the social construction of disability. Both feminism and disability studies focus on people who have been categorised as the “Other.” They both challenge the public/private divide which locates personal experiences of oppression in the private sphere. Rosemary Garland-Thomson (1997a: 22) has highlighted the similarities between the social meaning assigned to disabled and female bodies:

I want to theorize disability in the ways that feminism has theorized gender. Both feminism and my analysis of disability challenge existing social relations; both resist interpretations of certain bodily configurations and functioning as deviant; both question the ways that differences are invested with meaning; both examine the enforcement of universalizing norms; both interrogate the politics of appearance; both explore the politics of naming; both forge positive identities.

The feminist strategy of distinguishing sex from gender has been a conceptual framework which parallels, and perhaps inspired, the distinction in disability studies between impairment and disability. In the same way that feminist politics has challenged the idea that being biologically female destines a woman to domesticity, child care and passivity, the impairment/disability divide contests the construction of disabled people as passive, helpless and needy.

Garland-Thomson suggests that feminism has considered these issues far more than disability studies. However, it is difficult to speak of the disability movement and the feminist movement as separate entities, since many disabled people are feminists, and many feminists are disability rights activists. Feminism has greatly influenced the political analyses and tactics of the disability movement, though the extent to which feminism has changed to accommodate the needs of women is open to debate. Meekosha (1990) argues that changes within feminism in response to the demands of disabled women have often been little more than rhetorical. Nevertheless political struggles of disabled people have frequently taken inspiration from the feminist movement. For instance the focus on self-organisation and widespread political mobilisation by the disability movement has reflected the influence of the women’s movement and other liberation movements (Shakespeare, 1994a).

Feminist theory is also useful for disability studies because it has extensively grappled with the questions of how to conduct non-exploitative research. Many years ago, feminists such as Bart (1971), Bernard (1973) and Smith (1974) questioned the appropriateness of traditional data collection methods, and Oakley (1981) argued that feminists must explore the significance of non-hierarchical relationships in their methodologies. Acker, Barry and Esseveld (1983) pre-empted Oliver’s (1992) call for “emancipatory” research methods when they demanded that research should not be oppressive, that it should question dominant intellectual traditions, and that it should be self-reflective. The importance of adopting methodologies which are non-hierarchical and non-exploitative has only become a major question in disability studies over the last ten years, particularly since the publication of a special edition of Disability, Handicap and Society in 1992. Feminists have a long history of grappling with these questions and it would be foolish for disability studies to ignore this body of literature.

I have also been interested in the way people with brain injuries negotiate their identities—some choose to hide their experience of disability, and pass as nondisabled; others see a great deal of importance in “coming out” as a disabled person; and most use a host of strategies to negotiate their needs within both friendly and hostile environments. In this regard, I have looked to the writings from queer theory in order to better understand the difficulties associated with passing and coming out. There are many other similarities in the experiences of queers and disabled people, including familial isolation, high rates of violence, and the experience of stereotypes and discrimination. As a result, both the queer and the disability movements, and the intellectual disciplines which study them, share many common characteristics. Both queer theory and disability studies share a debt to feminism, and both oppose hegemonic normalcy and deconstruct identity categories. Queer theory, like feminism, is not a unified body of thought, but it is characterized by an approach which consistently problematizes categories of identity (Butler, 1990; Spargo, 1999; Wilson, 2001). Queer Theory is useful because it suggests that binary approaches to identity are fundamentally flawed. One of the strands of queer theory “finds the gaps” between male and female genders—such as the case of intersexed people—and it highlights their significance for the study of gender. “Intersex” is a term used to describe someone who has an anatomy that is neither clearly male nor female (Kessler, 2002). Some of the medical terms used to describe people with such anatomy include Androgen Insensitivity Syndrome, Kilefelter’s Syndrome, progestin virilization, mixed gonadal dysgenesis, and true hermaphrodism. Often there is no clear answer to the question “which gender is this child,” but the social importance placed on announcing whether the baby is a boy or a girl means that the individual and the family can face complex issues surrounding identity. This literature is useful for disability studies because it provides lessons on how to incorporate the experiences of people who have unorthodox identities—for instance, someone with an impairment who does not identify as disabled. At the moment, they simply “fall through the gaps.” People are commonly assumed to be either disabled or non-disabled—those who experience life at the margins are largely ignored. Queer Theory suggests that the “problem” of such identities stems from a binary way of conceptualising the experience. Binary approaches can never capture the nuances and subtleties of lived experience.

Stein and Plummer (1996) argue that queer theory has four main elements: identifying sexual power in different levels of social life, enforced through binary divides and expressed discursively; problematizing sex, gender and identities as fluid categories; preferring anti-assimilationist strategies ahead of civil rights strategies; and being prepared to examine areas which would not generally be regarded as sexual, and providing “queer” readings of non-sexualised or heterosexual texts. Queer theory arose in response to the development of the AIDS epidemic, in particular the individualising nature of medical responses, shifts in sex education from an emphasis on sexual identities to an emphasis on sexual practices, continuing homophobic positioning of AIDS as a gay disease and the coalitional politics involved in responses to AIDS (Jagose, 1996).

Queer theory is also interesting for disability studies because one of its major themes has been whether queers should adopt a political position of assimilation (arguing that they are “just like you” and therefore deserve exactly the same rights as heterosexuals) or whether they should flaunt their differences. The question of assimilation or defiance is also important for disabled people. Queer people have often engaged in flaunting as a form of transgressive politics and flaunting is becoming increasingly popular in the disability movement. Flaunting involves re-claiming words of hatred and turning them into words of pride—e.g. “crip,” “faggot,” “dyke.” Words like “crip” or “gimp” have been reclaimed by some disability activists as a form of cultural defiance. However, Clare (1999) warns that flaunting may be a double-edged sword, because words of hate still retain their original meanings at some level.

Postmodern approaches can also offer disability studies important insights. One ingredient of a postmodern approach which has been identified by Lyotard (1984: xxiv) is “incredulity toward metanarratives.” That is, postmodernists are reluctant to develop general theories, and tend to stress that their conclusions are localized and specific. Many postmodernists have contributed significantly to the rethinking of power, self, the body, and identity in contemporary societies. Their work has challenged traditional notions of power, highlighted the importance of language and discourse, emphasized the role of disciplinary mechanisms affecting both macro and micro politics, suggested that the self was decentered and fragmented rather than rational and autonomous, and promoted deconstruction as a way of critically interrogating knowledge and “truth claims.” Postmodern approaches recognize that identities have very important personal and social effects, but they emphasize the importance of adopting a critical attitude towards binary and essentialist notions of group identities (Nicholson and Seidman, 1999). Postmodernists also ...