Living with Brain Injury: Narrative, Community, and Women’s Renegotiation of Identity

Introduction

>> 1 Introduction Nancy: And this is so funny, constantly doctors were asking me, “Tell me what this means: People who live in glass houses shouldn’t throw stones.” Constantly! They were giving me these little phrases and asking me what they mean: “Tell me what this means. Tell me what this means.” You know? Those are hard. Those are hard to deal with. When Nancy was in her late twenties she began having blinding headaches , tunnel vision, and dizziness, which led to a diagnosis of a congenital arterial malformation on her brain stem. Surgery was scheduled and she wrapped projects at her job as a financial consultant, assuming she would be back at work in three weeks. The first surgery was unsuccessful , and complications during a second surgery caused serious damage to the right side of her brain, resulting in partial paralysis of the left side of her body and memory and cognitive problems: “I woke up and there were all these deficits and I was really blown away by it. I was pretty severely depressed about it.” Although she was constantly evaluated in various ways, Nancy’s own questions and her distress got little attention in the hospital; it took a suicide threat to obtain acknowledgment and help for her depression. Her cognitive impairments remitted 2 > 3 self and others; living with brain injury is therefore an ethical and intersubjective negotiation. Furthermore, living with brain injury involves identifying or creating a sense of what it is pleasing and enjoyable to be; it therefore entails aesthetic negotiations of being in the world. This book offers an analysis of extensive interviews conducted with ten women at varying stages of recovery from and living with brain injury. The primary focus is on how the women reauthor identity, meaning, and relationships post-injury. It looks at their strategies for negotiating the complex array of narratives, practices and contexts that support and/or impede that process. The use of terms like “reauthoring ” and “negotiation” intentionally emphasizes agency, creativity, and complexity in the women’s experience of negotiating living with brain injury in an “ableist world.” They are also meant to confer value on the accounts, and the ways they might enable a “reimagining” of living with brain injury, and of disability more broadly (Garland-Thomson, 2005). In that regard, it is worth pointing out that the term “negotiation” is used here in the sense of adaptation married to opposition in response to dominant forces (Gramsci, 1971), not in Goffman’s (1963) sense of managing stigma and negotiating a spoiled identity within terms and conditions that stigmatize and spoil (Fine & Asch, 1988a; Hogan, 1999). Dominant narratives about disability, particularly brain injury, negate complexity, agency, and creativity; people with disabilities are generally represented as broken, abject, lacking, unfit, and incapable, or more sentimentally as suffering and brave. Such narratives subjugate the lives and bodies of people we think of as disabled (Garland-Thomson, 2011). They also limit the imaginations of people who consider themselves nondisabled (Siebers, 2008). The women and their accounts are therefore positioned in this book in terms of human variation, rather than essential inferiority or lack; their voice and their agentive struggles are foregrounded in the interests of “formulating a logic that allows people to claim the identity of disabled without having to conceive of it as a diminishment of self” (Garland-Thomson, 2005, 1567). Meaning, in relation to brain injury and disability, can be understood in two ways: in terms of consequences and in terms of significance (Bury, 1991). As consequences, meaning refers to the practical impact of a disability on roles and relationships in day-to-day life, such as adjusting to functional limitations or fatigue and the changes in roles that 4 > 5 identity and learning or reconstructing a new, post-injury self; (2) social disconnect and building new relationships and a place in the world; (3) the need for contexts and resources to engage in meaningful activities and roles; and, (4) “loss of self” in the eyes of others, involving negative perceptions and social categorizations of brain-injured persons by themselves, by others, and by culture in general (Ditchman, 2011; Douglas, 2012; Gracey & Ownsworth, 2012; Jones et al., 2012; Klonoff, 2010; Levack, Kayes & Fadyl, 2010; Lorenz, 2010; Nochi, 1998). With the recent development of frameworks like “social neuropsychology” (Haslam et al., 2008; Jones et al., 2011) and “holistic neuropsychology” (Klonoff, 2010), rehabilitation psychologists have taken a “social turn” in a traditionally individual and biocognitive field, giving recognition to social processes that...