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In Event: Examining the Exceptional: Case Studies of Knowledge Production in Biomedicine and Science
Constructions of state and selfhood are often mediated through claims to citizenship. In the Brazilian case, unequal distribution of rights and privileges has long been inherent in the construction of the state. Marginalized groups respond to this inequity with a wide variety of political strategies. In this paper, I uncover the ways that Brazilian individuals with sickle cell disease (SCD) claimed exceptional disease status in order to force recognition by the State. They used the notion of sickle cell as a “black” disease, tied specifically to African ancestry, as an individual and collective strategy for claim making. The geography of disease also became an important marker of distinctiveness. I examine the genetic exceptionalism of sickle cell disease as constructed within the Northeastern Brazilian body, as compared with those who are from other regions of the country. Though black bodies living with SCD have historically been used as arguments for the biological foundations of human racial difference, in the contemporary moment the mobilization of racialized disease narratives by activists, who often self identify as black, has had important political implications. These claims to citizenship may simultaneously reify and reform ideas about race and biology. I show that the responses to these demands by State actors, both on the federal and regional levels, have used the exceptionalism of these bodies in arguments both for and against the interests of individuals with sickle cell disease.