In Africa, sickle cell disease contributes substantially to mortality in children younger than 5 years and in Uganda alone the public health burden is great (Ndeezi 2016, Green 2015, Serjeant 2003). The W.H.O. strategy for sickle cell disease (SCD) in the African Region is comprehensive. The guiding principles include country ownership of the strategy, partnership and team building, evidence-based interventions, and cultural sensitivity.
My new funded project will center women at the development and implementation stage of mDex-a diagnostic tool for SCD. At one end is a Ugandan women-led team interfacing with Western forces and funders as they develop a patent for mDex. I plan to investigate how technology is gendered, how they (as African women) are considered as innovators, and how their performance through technology can be placed in broader configurations of simultaneous inclusion and exclusion.
At the other end, are the women who stand to benefit (at least in theory) from the diagnosis itself. How will they (through consent and assistance), in conjunction with medical personnel, contribute to knowledge production for SCD in Uganda? Longitudinally, I am interested in the ways that empowerment take shape and how this empowerment that turns citizens (primarily mothers) into laboratorians might impact community building and local policy making? Will mDex become a state project? Drawing from the theoretical fields of the anthropology of technoscience, feminist technoscience, and postcolonial technoscience, I aim to situate social, geographical, and political debates about neglect, innovation, and empowerment.
Brazil has a troubled history of systemic and structural racism despite a cultural ideology of racial mixture. Bahia, a state in the northeast, has the highest prevalence of sickle cell disease (SCD) in the country and is the metaphorical black capital of Brazil, yet the exclusionary infrastructure and care for the “black”-labeled SCD often leads to negative outcomes. Further, black women in Brazil face challenging health disparities and experience poorer health outcomes and lower life expectancies than their white female counterparts. Biocultural citizenship describes the ways in which Afro-Brazilians utilize a deep entanglement of biology and culture to make claims to the State for access to fuller citizenship. This study found that those who are darker in skin color have a much deeper relationship with SCD likely due to the additional complications that having a chronic disease brings, exacerbated by the structural inequalities embodied in their blackness. There are no current analyses on how the intersectionality of race and skin color may express itself in the treatment and care across the phenotypic continuum for those living with SCD. Through a mixed-methods research design, the proposed study seeks to identify the knowledge, attitudes, and beliefs around gender and skin color that may contribute to health disparities of those living with SCD in Salvador, Bahia, Brazil. This project will contribute to a larger discussion of the intersections of race, skin color, gender, identity, and citizenship of Brazilians living with SCD