Delineating Disease: Self-Management of Leprosy Identities in South India

Author: Staples, James

Source: Medical Anthropology, Volume 23, Number 1, January–March 2004 , pp. 69-88(20)

Publisher: Routledge, part of the Taylor & Francis Group

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Abstract:

The national and international agencies working to eliminate leprosy are also dominant in setting the boundaries of official discourse on the issue. Within these boundaries the disease is commonly represented as a medical problem with negative social consequences, and it is believed that both problem and consequences will be resolved if leprosy is eliminated and its victims treated and (if necessary) reintegrated within their social groups. For those affected by leprosy the issues are frequently different, elimination in some respects representing a problem as much as a solution. Against this background, which I describe with reference to a group of leprosy-affected people in South India and their position vis-à-vis leprosy organizations, I explore some of the contexts in which leprosy patients actively manage their own situations, often in defiance of prevailing development orthodoxies. I conclude that closer observation and analysis of the strategies patients use to manage their disease status have important policy implications.

Keywords: leprosy; Andhra Pradesh; South India; NGOs; development; begging; compensation; policy

Document Type: Research article

DOI: http://dx.doi.org/10.1080/01459740490276075

Publication date: 2004-01-01