MAPACA

Mid-Atlantic Popular &
American Culture Association

While the postgenomic era is full of promise and “activist science” (Rapp 2011: 665), for many with rare diseases, the potential of genetic knowledge has been disappointing. Worldwide it is estimated that there are more than 6,800 rare diseases. Nearly 30 million people are affected in the U.S. alone. Yet we know little about the everyday lives of this growing population. What we do know is that children and transitioning teens with rare diseases are now living longer, and through episodes of both crises and redefined calm. For this conference, I propose to examine a portion of my larger project, Luminous, which focuses on the everyday experiences of one such rare pediatric disease, ALGS (Alagille Syndrome). Through a cultural exploration of the rare and the chronic in U.S. society, I focus on a paradox: while children are now living longer with a range of bodily and mental differences, as they age, they remain outside of imagined futures (Kafer 2013). I argue that we are in the midst of a historical shift, one marked by the unintended consequences and possibilities of a chronicity that is embodied, cumulative, personal, and structural (e.g. Bourgois and Schonberg 2009). How then to imagine and make inclusive futures? Specifically, this paper develops what I term practices of public intimacy. I build upon ethnographic research (participant observation and interviews) of ALGS conferences that bring families, activists and medical professionals together. Here we see most clearly the practices by which children, always already located at the intersection of the scientific and the medical, get translated through the genomic into a wider humanity via an unexpected radical return to the body. Cultural analysis of parental narratives that publically share the intimate aspects of chronic lives support this work alongside an examination of digitally mediated stories, caregiver activism and networks.