Chelsey Roxanne Carter

Grant Type

Dissertation Fieldwork Grant

Institutional Affiliation

Washington U., St. Louis

Grant number

Gr. 9807

Approve Date

April 29, 2019

Project Title

Carter, Chelsey (Washington U., St. Louis) "It’s a “White Disease”: ALS, Race, and Suffering in a Divided City "

“I didn’t think this was a black person’s disease…” headlined an NBC News article in 2015 (Williams 2015). Cody Williams, a 56-year-old former journalist, recounts his surprise when he found out he had amyotrophic lateral sclerosis(ALS), saying that doctors tested him for AIDS and asthma, then questioned if he was abusing drugs after tests failed to detect those diseases. The ALS Association reports: “93% of patients in the Database are Caucasian” (ALSA 2017). Yet, they indicate that ALS occurs worldwide “with no racial, ethnic or socioeconomic boundaries and can affect anyone” (ALSA 2017). The role of race in ALS, therefore, is unclear. Furthermore, ALS confounds biomedicine in multiple ways given the dearth of information about its etiology, prognosis, and cure. This lack of knowledge makes ALS a potent projective space for both doctors’ and patients’ fantasies about cause, risk, and cure. How does race affect the experience of living with ALS, a purportedly “white disease” whose causes, social correlates, and cure are unknown? I propose an ethnographic study of black and white Americans living with ALS in St. Louis to investigate how illness experiences of black and white people with ALS are mediated by productions of ALS knowledge and race.