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Date of Award
Doctor of Philosophy (PhD)
Our understanding of ALS (amyotrophic lateral sclerosis) in conjunction with race is unclear. This dissertation 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 ethnography investigates how Black Americans living with ALS in St. Louis, Missouri engage with racialized landscapes of care. Black people with ALS often go undiagnosed or misdiagnosed, leading in some cases to years of increased suffering and premature death. I found that Black patients with ALS have longer diagnostic time periods than White individuals with ALS, more negative experiences with doctors and resource partners, are less likely to participate in ALS care/treatment spaces and clinical trials, and are also dying from ALS faster after symptom onset. Rather than deploying racial science that would suggest Black bodies are uniquely different than white bodies, this project demonstrates how anti-Black racism and the logics of white supremacy have deleterious effects on Black people’s bodies and biology. This project speaks to larger anthropological concerns about how local biologies are generated and what effects they have on everyday experiences of illness and care. My work extends these discussions by bringing together critical race studies, Black feminist discourse, and medical anthropological theory to develop racialized local biology as an analytic.
Chair and Committee
John Bowen, Talia Dan-Cohen, Daná-Ain Davis, Leandris Liburd,
Carter, Chelsey R., "It is a “White Disease”: ALS, Race, and Suffering in a Divided City" (2021). Arts & Sciences Electronic Theses and Dissertations. 2400.
Available for download on Wednesday, May 19, 2100