Risking the future: Biomedicine and modernity in the lives of adults with cystic fibrosis

This dissertation, based on three years of ethnographic fieldwork, is an interpretive study of chronic disease and disability, the linkage of personal and technological futures, and the effect of institutional and individual transformations associated with biomedicine and modernity. Emphasizing individual narratives, this work explores the cultural and material production of new embodiments and biotechnologies, and how adult patients with Cystic Fibrosis construct narratives of the self within the shadow of disease and a foreshortened lifespan.; Empirically this entails the analysis of conversations, interviews, and observations in clinic, hospital, home, and community settings with patients and their families, as well as clinicians, surgeons, nurses, and other health care professionals. Major topics include medicine, modernity, prognostication, patient-physician conversation, organ transplant, the management of immunity, risk interpretation, individualism, embodiment, the social construction of self, death, magic, bioethics, and the multiplex relations between disability and social norms. I argue that risk interpretation is heavily influenced by the cultural ideal of the body and that technologies of normalization strongly influence decisions to pursue this high-risk surgery. Consequently, the linkage of personal and technological futures often reflects the effort of patients seeking to reconcile the experience of estrangement in a society that does not accommodate or understand disability, decline, and death.; At the theoretical level, the dissertation develops and extends ethnographic poetics by demonstrating the richness of this approach for understanding the everyday lives of patients and their families as they negotiate daily life with chronic disease, the relationships between the construction of identity and the progress narratives of modernity, and the role of the social body in shaping individual interpretations and visions of the future amidst on-going dilemmas of appropriation and loss. Finally, this work contributes to an emerging literature concerning the body as an axis of social analysis, including disability and the social construction of normalcy, the interconnection of biotechnologies that seek to control and shape the body with modern forms of subjectivity and risk interpretation, and the subsequent reshaping of political and personal meanings of the body.