Stigma continuity of leprosy in Brazil, 1924-2018

Leprosy exemplifies the social, physical, and mental repercussions that disease can have for patients. Brazil and India have the most newly diagnosed cases of leprosy per year. From the 1920s to the 1970s, Brazil’s health policies required that patients be placed in leprosaria distant from their loved ones and isolated. These policies traumatized and dehumanized patients. I use an interdisciplinary approach to analyze the continuity of discrimination and stereotyping of leprosy in Brazil. This project aims to spread awareness that leprosy is still a problem to be addressed and develop an understanding of the power and longevity of disease stigma and stereotypes. Over two summers in Brazil, I compiled four types of sources from 1924 to 2018: (1) literary sources, (2) visual sources, (3) medical records, and (4) oral narratives. Using literary analysis of themes and representations, I analyze visual and literary sources of Leprosy in Brazil. I gathered ten oral narratives of healthcare workers and patients through snowball sampling in two leprosaria, a state reference hospital, and local clinics. I used medical records (1920s-1980s) from the Emilio Ribas Public Health Museum’s archives in São Paulo that show a narrative of the patient’s lives in the leprosaria, detailing runaways, removed children, etc. and clinical treatment. The pool of sources helps understand life when labelled a “leper” in Brazil. Through the diversity of sources across time and intended fields (literature, art, public health), I show the continuity of stigma and fear despite leprosy’s curability since 1941. I analyze the diverse origins of the stigma of leprosy and suggest that the cultural phenomena surrounding leprosy has a longstanding impact on patient’s quality of life. Leprosy in Brazil shows the failure of purely biomedical medicine in treating patients. Lack of empathy and consideration for patients’ quality of life has longstanding effects that persist even after a biological cure is discovered. Public health campaigns should target the many origins of leprosy stigma to help fully mitigate patient discrimination.