Race, Policy, and Culture: An Identity Crisis for Sickle Cell Disease in Brazil
My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of sickle cell disease (SCD) as a “black” disease, despite a prevailing cultural ideology of racial mixture.The concepts of race and race-associated health disparities are firmly planted in medical, public health, and scientific discourse. The current debate over the epidemiology of health disparities has garnered global attention, and reflects long-standing disagreements around the meaning of race in science. SCD is often ascribed to African ancestry, but more accurately it is a marker for ancestry in a geographic location where malaria is or was prevalent. I explore how the culture often usurps biology in different ways and by different people.
Conflicting racial frameworks found within this case result in a multi-level identity crisis at the micro, meso, and macro level in Brazil. At the state level, I describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. At the organizational level, I investigate the alignment of the SCD movement with the movimento negro and the decisions made by some civil societies to influence health policy using anti-racist motives. Lastly, I explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease. I aim to answer the question: How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? I analyze how frameworks of biology, social determinants, and policy respond to Brazilian cultural and historical ideas about race, health, identity, and legitimacy. Working with the theoretical tools of biological citizenship and biosociality, my work emphasizes the intimate relationships between the medical and the social. Drawing on ethnographic work and oral history in Brasília, Rio, and Salvador, my research aims to situate social, geographical, and political debates about race and SCD in their historical context.