Chelsey Roxanne Carter

Grant Type

Dissertation Fieldwork Grant

Institutional Affiliation

Washington U.

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 "

CHELSEY CARTER, then a graduate student at Washington University, St. Louis, Missouri, was awarded a grant in April 2019 to aid research on “It’s a ‘White Disease’: ALS, Race, and Suffering in a Divided City,” supervised by Dr. Rebecca Lester. Our understanding of ALS (amyotrophic lateral sclerosis) in conjunction with race is unclear. This ethnography asks: how does race affect the experience of living with ALS, a purportedly “white disease” whose causes, social correlates, and cure are unknown? To engage this question, this research investigates how Black Americans living with ALS in St. Louis, Missouri engage with racialized care landscapes. Black people with ALS often go undiagnosed or misdiagnosed, leading in some cases, to years of increased suffering and premature death. The study also found that Black patients with ALS have more extended diagnostic periods, more negative experiences with clinicians, are less likely to participate in ALS care spaces and clinical trials, and die from ALS faster after symptom onset. Rather than deploying racial science suggesting Black bodies are different from white bodies, this study establishes how anti-Black racism and the logics of white supremacy have deleterious effects on Black people. This ethnography speaks to more significant anthropological concerns about how local biologies are generated and their effects on everyday experiences of illness. This study develops a racialized local biology as a new analytic by bringing together critical race studies, Black feminist discourse, and medical anthropological theory.