Escritas de si e de uma doença: um estudo sobre produções de caráter biográfico e autobiográfico de ex-portadores do mal de Hansen / Writing about oneself and a disease: a study on biographical and autobiographical work by survivors of Hansen's disease

Resumo Este artigo investiga alguns dos elementos de representação em produções literárias baseadas em memórias de ex-portadores de lepra (atualmente denominada hanseníase) que viveram o regime de isolamento, em vigor no país até meados da década de 1980. Além do estigma de maldição que a lepra já carregava, a medida causou inúmeros traumas àqueles que sofreram a exclusão social e a perda de seus vínculos afetivos. Essas experiências resultaram na escrita de autobiografias, biografias ou, ainda, romances inspirados nas memórias da vida em isolamento. Busca-se, portanto, compreender, a partir do estudo de alguns desses registros, como essas pessoas se viam e como viam a doença e os locais de isolamento.

Abstract This article investigates some elements of representation in literary work based on memoirs of people with Hansen's disease (formerly known as leprosy) who lived the confinement forced upon people with this disease in Brazil until the mid-1980s. In addition to the stigma associated with leprosy, this policy traumatized patients, who faced social exclusion and loss of relationships; these experiences yielded autobiographies, biographies, and even romances inspired by their memories of life in isolation. Our objective is to understand, through the study of some of these records, how these people saw themselves and how they viewed the disease and their places of confinement.

Nuancing 'leprosy stigma' through ethnographic biography in South India.

Synoptic life history accounts and case studies of people with leprosy have tended to follow conventionalised narrative forms, with the onset of leprosy causing a violent rupture in otherwise positively construed life courses. Many of those I worked with in India, well-versed in relating their stories to donor agencies, were also aware of the power of such narratives to access funding. While case studies can be informative about the politics of representation, then, they often obscure as much as they reveal about the lives of those described within them, emphasising leprosy-related stigma at the expense of other forms or drivers of social exclusion. Drawing upon a series of interviews with a leprosy affected man I have known and worked with for 25 years, this paper demonstrates how more nuanced--and, from a policy perspective, more useful--accounts might be achieved through intensive biographical interviews carried out over time. In particular, analysis of such biographies, set against the wider backdrop of ethnographic research, allows for a more subtle reading of leprosy-related stigma, contextualised in relation to a range of intersecting socio-political, cultural and economic concerns.

Memories and history of Hansen's disease in Brazil told by witnesses (1960-2000).

This report is a preliminary result of a survey on memories and history of Hansen's disease, or 'hanseniasis', prepared by the Fundação Oswaldo Cruz (Fiocruz) and the Universidade Federal do Rio de Janeiro (UFRJ) using statements from those who have been afflicted by the disease or those that have fought against it. It outlines the methodology used by the authors and gives a succinct history of Hansen's disease in Brazil, together wish information on the stage of the survey with extracts from our archives of statements. The founding and the role of Movement for the Reintegration of People Afflicted by Hansen's Disease (Morhan) are explained in the testimony of Thomas Frist, a social scientist who worked in Brazil in the 1970s and 1980s, when the country's old colonies were being restructured, and Cristiano Torres, a former patient who spent time in prevention centers and leproseries in Pará state and who is now active in proposing new policy for the control of Hansen's disease.