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Nuancing 'leprosy stigma' through ethnographic biography in South India
1School of Social Sciences, Brunel University, Uxbridge, Middlesex. James.staples@brunel.ac.uk
Abstract:
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.
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