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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Cystic Fibrosis Communities: Shifting Sites of Prognostic Imagination


ELSIcon2022 • Paper • May 27, 2022

Rebecca Mueller

Long before COVID-19 made social distancing normal, people with cystic fibrosis already practiced such behaviors. Between the 1980s and the present, the cystic fibrosis community was reconfigured in response to evidence that opportunistic pathogens can spread between people with CF. Given infectious risk, the CF community gradually migrated from specialized CF summer camps and shared hospital wards to social media and virtual conferences. Using historical and ethnographic methods, I trace the transformation of CF community and its impact on the lived experience of CF. As CF communities morphed, the demographics of CF also evolved from a lethal pediatric disease to a disease of both kids and adults. Amidst a rapidly evolving prognosis, CF sociality came to inform what I call prognostic imagination, the visualized projections that an individual can see, hope, or fear for their lives. For some, meeting CF elders at camp recast CF as survivable, restoring individuals’ imaginations of adulthood, with college graduation, marriage, and longevity modeled by camp counselors. For others, CF camp eroded individuals’ expectation of a typical lifespan, with the specter of an adolescent funeral. While CF camps became critical sites of prognostic imagination, contemporary virtual forms of CF community enable people with CF to build collective knowledge that is critical for navigating life amidst an uncertain, evolving prognosis. I argue that CF lives complicate normative conceptions of time and future, and provide insight on the fragility, resilience, and practical adaptation of prognostic imagination at a moment when genomic sequencing is delivering more prognostic information. 


Lived experience of genetic conditions
Race, disability, and gender studies

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