“Tá dentro, não tá fora” : subjetividade, interseccionalidade e experiências de adoecimento de mulheres negras com doença falciforme

Abstract

This study is composed of two empirical studies, having as goals to get to know and to analyze the histories of black women with sickle-cell disease, and also to understand how their subjectivity is built and it is confronted from the meaning of the disease originates in the black ancestry. This research is exploratory, descriptive, with a qualitative design. Data collection was performed using semi-structured interviews, explored with the help of Critical Discourse Analysis. We studied 9 self-declared black women with sickle-cell disease, and who were assisted by the Sickle-Cell Reference Center of Porto Alegre’s Clinical Hospital (CRAF). The first study aims to get to know and to analyze the access of black women with sickle-cell disease to public health policies from the search of health care for issues produced by sickle-cell disease. The second study aims to get to know and to analyze the history of black women with sickle-cell disease, and to understand how their subjectivity is built and confronted from subjective senses associated with markers of gender, race and social class. The results showed that the psychosocial impact of sickle-cell disease significantly depends on services and health policies, on the access to technologies related to the disease, and on the meanings that subjects associated with their disease. We observed that the therapeutic itinerary of women has been proven to be a constant process of search for care, which was built in the relations of women’s families and some professionals, up to the time when Brazil’s Public Health System (SUS) started to offer, even partially, specialized attention and care to this health condition. The therapeutic route was submitted to the relations established by social, health, and cultural inequities, and very little by principles of public policies. Institutional racism, present in all black women’s approaches in society, answers to the historical vulnerability that makes black women invisible. Sickle-cell disease, according to black women, is a health condition that keeps subjective senses marked by the intersectionality of race, gender, and social class. On the same direction, women have shown that the illness experience, though, intense, debilitating, and deep, did not keep them away from their constructions of gender; on the contrary, the complexity of the disease provided an opportunity in which they could build themselves as subjects of possibilities.