Legitimate suffering: a case of belonging and sickle cell trait in Brazil

Abstract

Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress.

Sickle Cell Disease in Bahia, Brazil: The Social Production of Health Policies and Institutional Neglect

“…Analyzing SCD policies from 1996 until the present day leads us to interpret that the alliance with the Black Movement can be seen as what Brown et al coined a 'window of opportunity' since racial inequities were in the political agenda and government actors were opened to address the issue [46]. It was also a very effective way of including the demands of a disease into a much broader struggle for the health of black populations, adding more advocates [47].…”

“…The social history of SCD as a disease that originated in Africa as an adaptive response to malaria evokes a very strong feeling of social belonging and blackness, which in Brazil is closely tied to racism [47]. Together with the diagnosis of SCD, a sense of 'biocultural citizenship' can be developed.…”

“…In this respect, the feeling of neglect experienced by individuals with SCD uses the existence and permanence of racism in Brazil as a means of explaining the government's disregard of SCD [47]. Therefore, racism becomes a unifier of demands and a driving force of activism for individuals with SCD [49].…”