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VVVVVVVVVVV 195 10 Disability and Dysappearance Negotiating Physical and Social Risk with Cystic Fibrosis RON MAYNAR D Notions of progress are embedded in culture, where ideas of activity, achievement, and future orientation inform a view of life seen as a trajectory , a narrative where the individual has the responsibility for creating continuity and permanence. Of course there is a great deal of slippage with this trajectory since the unpredictability of actual lives serves as an ongoing counterpoint to the archetypal social narrative focused on the linear, orderly unfolding of life. One of the enduring risks to this narrative is the body’s health—indeed, a cardinal element of embodiment is its indeterminacy. A common interruption to this narrative of continuity is the experience individuals may encounter with chronic illness and the subsequent uncertainty concerning its course. Although continuity in life is an illusive narrative, it is an effective one: It organizes people’s plans and expectations about life, how they understand who they are, and what they do (Becker 1998). For those who experience it, the vivid but unwanted consciousness of disability’s embodiments is a kind of dysappearance, a distancing between experience and its construction, arising from the embodied nature of the mind, a structure of experience that makes possible and encourages certain practical or interpretive directions (Leder 1990). The risk of dysappearance challenges the construct of continuity that is deeply embedded in social life. Disjunctions between the present and the future create situations of fundamental uncertainty, which may be magnified by the course of increasing disability. This uncertainty can make the task of defining and redefining the self problematic, where risk becomes a productive force for creating life’s narrative and a forensic framework for managing the course of disease. New forms of subjectivity are developed with the adoption of risk frameworks, whereby risk is viewed as controllable, as long as expert knowledge can be properly brought to bear upon it (Giddens 1990, 1991). 196 RON MAYNARD The Social Envelope of Dysappearance The highly contingent nature of this knowledge could be seen as it played out in the lives of adults with cystic fibrosis (CF). From 2000 to 2003, I conducted an ethnographic study of the lives and social networks of adults with CF—at home, in the clinic, in specialty settings, hospitals, and community settings (Maynard 2003, 2006). I also conducted numerous in-depth interviews with clinicians and followed physicians on a periodic basis as they treated a larger cohort of patients in the clinic. My intent was to learn the perspectives of people living with CF, as the disease framed daily struggles and challenged routine ways of living. When they were born, their parents were given survival scenarios, typical for this generation , of eight to ten years. When these patients subsequently reached the age of ten or eleven, they would be given a survival outlook in the late teens. And yet again, upon reaching this benchmark, the prognostication timeline would be reset, typically for a life span ending in the late thirties. When I began following these patients, they were in their midthirties and all were experiencing various stages of decline. This made attention to and interpretation of risk factors particularly urgent. The imperative of choice among competing systems of expert knowledge was fundamental to these individual navigations, as Sobo also observes in her chapter in this volume. The awareness of potential innovative treatments included sources that extended beyond the clinic to the Internet, journal articles, newspapers, and magazines, all resources that these patients followed closely for new information. But perhaps just as important was the subjective experience of their bodies and how their health informed and mirrored their narratives. This ever-changing flow of information, and their lived experience with CF, led to an awareness of the limitations of expertise and a reflexive dependence on the self to bring the future under the influence of present calculations (Giddens 1990, 1991). This is one of the fundamental dilemmas of globalization magnified in biomedicine and biotechnology (Lock 2001); choice and interpretation are played out against cultural values that entail a need to establish and maintain links to an imagined future (Becker 1994). In a sense, expert knowledge systems can become background noise, listened to episodically as health ebbs and flows. In this ebb and flow, this entwinement of health and knowledge, the choices made by patients, and the interpretations they select, can have profound effects on their life course. The people who participated...

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