Staples James
School of Social Sciences, Brunel University, Uxbridge, Middlesex.
Lepr Rev. 2011 Jun;82(2):109-23.
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.
麻风病人的概要生活史记录和案例研究往往遵循传统的叙事形式，麻风病的发作在原本积极构建的人生历程中造成了剧烈的断裂。我在印度共事过的许多人，都很擅长向捐助机构讲述自己的故事，他们也意识到了这类叙事在获取资金方面的影响力。然而，虽然案例研究可以提供有关表征政治的信息，但它们往往在揭示其中所描述之人的生活的同时，也掩盖了同样多的内容，强调与麻风病相关的耻辱感，却忽视了其他形式的社会排斥或其驱动因素。本文基于对一位我认识并共事了25年的麻风病患者进行的一系列访谈，展示了如何通过长期深入的传记式访谈来实现更细致入微——从政策角度来看也更有用——的描述。特别是，将这类传记分析置于更广泛的人种志研究背景下，有助于更微妙地解读与麻风病相关的耻辱感，并结合一系列相互交织的社会政治、文化和经济问题来进行情境化分析。
