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Anger and Forgiveness"Are You There Alone?"10 Good Questions about Life and DeathA Casebook of Ethical Challenges in NeuropsychologyA Companion to BioethicsA Companion to BioethicsA Companion to GenethicsA Companion to GenethicsA Companion to Muslim EthicsA Cooperative SpeciesA Critique of the Moral Defense of VegetarianismA Delicate BalanceA Fragile LifeA Life for a LifeA Life-Centered Approach to BioethicsA Matter of SecurityA Natural History of Human MoralityA Philosophical DiseaseA Practical Guide to Clinical Ethics ConsultingA Question of TrustA Sentimentalist Theory of the MindA Short Stay in SwitzerlandA Tapestry of ValuesA Very Bad WizardA World Without ValuesAction and ResponsibilityAction Theory, Rationality and CompulsionActs of ConscienceAddiction and ResponsibilityAddiction NeuroethicsAdvance Directives in Mental HealthAfter HarmAftermathAgainst AutonomyAgainst BioethicsAgainst HealthAgainst Moral ResponsibilityAgency and AnswerabilityAgency and ResponsibilityAgency, 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Stories are told to make sense of things. Some stories are told specifically to make political or moral sense, taking stock of a situation and locating it in a framework of meaningful ethical and political concepts. According to narrative theories of identity, stories provide a sense of self as well. Sometimes they are overtly about the formation of a moral or political identity. What can be problematic is that societies don't have an infinite number of identity-forming stories: the repertoire is generally limited, and what's available doesn't always fit well with the reality of people's lives. This is why some theorists today argue that providing alternative narratives, or counterstories, can be a radical political move, challenging social conventions of identity while offering a means for those whose experiences run counter to the norm to make good sense of them.
Simi Linton is a psychologist and activist whose My Body Politic tells the story of her life after becoming paraplegic in 1971. While hitchhiking to a Viet Nam war protest in Washington, a car accident killed her husband and another friend, and broke her spine. A self-described college dropout and hippie beforehand, she spent months in rehabilitation centers, eventually returning to live and go to college in New York, before moving to Berkeley, California. It's while there that she first encountered the political disability movement, finding liberation and a welcoming if argumentative community in the Center for Independent Living. Returning to New York to attend Columbia University, she qualified in psychology and married David, continuing her life along its new trajectory as academic and disability activist.
An accident that leaves you widowed and paralyzed is, by any standards, a catastrophe, and there are available catastrophe narrative frameworks into which to fit it. These focus by and large on the tragedy of the normal life that has been lost, and the individual's struggle to retrieve normality in the face of new, apparently insurmountable barriers. (In accounts that make it to publication the barriers are never finally insurmountable, because most of us don't want to read stories about failure, however common it really is.) Linton's account is important because of the ways in which it subverts, rather than flouts, the conventions. Although it follows a traditional narrative structure, beginning with the traumatic event separating pre-disabled from disabled life, and tracking her physical restoration and re-entry to the "normal" world, she actually deals rather briskly with her pre-accident life. She mourns her husband and her friend, but one has a sense that the Simi she writes about is irrelevant to her writing 35 years later. Other things stick in her memory, and her aim is to call our attention to them.
One is the need for information: both purely factual information about things like symptoms and legal rights, and the kind of data that can be woven into a new life story. This is crucial because, unlike many other categories of social organization (such as gender, ethnicity and so on), disability is anomalous in that disabled people only rarely grow up having their experience validated as a normal way of life, surrounded by others like themselves. As a result, those like Linton, whose impairment has suddenly come upon them through accident, illness or just plain age, have to learn how to be disabled. She says, "In that first year after the accident, there was so much to learn...there was another curriculum we needed access to -- we needed the tools and knowledge that experienced disabled people have. We were novices...(p.109)..I remember in my early years with disability, I was flying by the seat of my pants, and so many [still] say they did the same." (p. 159)
She and the others at her rehabilitation center were abruptly faced, not just with a new situation but with a new way of being themselves, one that was radically unfamiliar ("None of us knew anyone else like us out there" p. 18). Her account reveals the experience to combine, paradoxically, both abrupt, one minute to the next disjunction between the former identity and the new one, and lengthy processes of learning how to be the new identity. Although "[t]he new shape and formation of my body were set on that April day…the meaning this new body would have for me took years to know." (p.3) Much of the early part of the book demonstrates how making sense of the new situation demanded an intense and particular kind of engagement, for which there were no real models out there: "I had gotten to this place not by denying my disability or, implausibly, 'overcoming' it, but by sailing headlong into it…it had become the most meaningful thing I could do." (p 120). I'm highlighting this first because it is a point echoed in many other published first-hand accounts of late onset impairment (see for example, John Hockenberry's Moving Violations), and because it's an aspect that most nondisabled people fail to acknowledge, in their drive to slot the impairment experience into a familiar (to them) frame of meaning. Indeed, Linton describes how she is often "faced with intrusive inquiries from strangers that began, 'what happened to you?'.." and on telling them, "[they] act as if [they] now know what is important to know about disability -- its genesis.." (p 110)
As the title suggests, there is a parallel narrative running about the politicization of disability in the 1970s and 80s. Linton was an anti-war activist before her accident, and political activity as a disabled person seems to come relatively naturally to her. She is adamant that it was by identifying with disabled people in political activism that she acquired the skills needed for her new life: "it was bonding together with other disabled people for good purpose that taught me what I needed to know..." (p 3) Through this focus she is not only able to recognize the connection between disablement and other forms of social exclusion and marginalization, notably of women and sexual minorities. Equally importantly, she is able to incorporate a theory of disability into her assembly of a new way of being in the world: it shapes how she understands and claims her place as a disabled woman, and as a politically active disabled academic, so providing one narrative of disabled identity that was previously missing.
Linton also manages the tricky task, which sometimes seems to defeat theorists, of scrupulously identifying the social and cultural barriers against disabled people while not losing sight of the impairment and impairment effects and on the individual and others around them. The book is an easy read, not theoretically heavy, and not particularly poetic (though the story on the last page has a lovely, dreamlike flourish). And it needs to be read with an awareness of what it knowingly offers and what it choose to leave out. There's much about Linton's emotional and private life that is only sketched in or skipped over entirely. She talks about undertaking therapy for years, for example, but no details are given and there is no real sense of the effort and pain involved here, unlike the effort of becoming a disabled person. I think that is deliberate: therapy deals with problems from the individual outwards, and that is not the kind of book Linton wanted to write. My Body Politic is a certain kind of political narrative. As Tobin Siebers comments, "Narratives about disability identity …are political because they offer a basis for identity politics, allowing people with different disabilities to tell a story about their common cause." (Tobin Siebers, Disability as masquerade. In Metzl and Poirier, Difference and Identity, p. 8) But narratives like Linton's are also political in claiming that identities can be found -- or found meaningful -- within the context of political life. We may well want to challenge whether that is universally true, but it certainly worked for her.
© 2007 Jackie Leach Scully
Jackie Leach Scully, Ph.D., School of Geography, Politics and Sociology, Newcastle University, United Kingdom