Oft-cited as a deterrent to elimination of the disease, stigma is still a critical feature of the leprosy landscape leading to ostracism, loss of employment, loss of housing, ridicule and rejection from society. The reason for leprosy-stigma rests historically and culturally on the mythology about the disease’s origin and transmission, and its aesthetic features such as the enigmatic physical disfigurement, and the distinctive ulcers consequent of untreated leprosy. While the literature on leprosy has been consistent in showing that stigma is a social complication of the condition worldwide, there is seldom recognition of processes of stigmatisation in broader contexts. Effective and sustainable interventions directed at curbing leprosy stigma and so improving its social course must, however, be informed by an appreciation of such contexts; particularly in the light of the goal to eliminate the disease worldwide. Examining stigma in the broader contexts of historical, social, economic, political contexts is the aim of this paper. The paper also has implications for broad ranging intervention efforts aimed at de-constructing leprosy-stigma in order to craft a more accommodating ambiance of acceptance, care and support for people affected by leprosy.
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.
To the historian, the ‘historical’ experience of leprosy control is not simply a backdrop to contemporary patterns or problems in disease control. The control of leprosy has been enacted in different ways in localities, territories and states across the world. The specific clinical, political, and institutional choices made in leprosy control have been highly significant in shaping attitudes and approaches to leprosy. The term stigma has a history of usage, contention and re-definition. Stigma, then, is a product of its intersecting social, economic, and medical contexts. In order to capture the degree to which stigma associated with leprosy has mutated and changed over time, this article concerns itself specifically with the colonial experience of leprosy, with a focus on the formerly leprosy-endemic area of south-eastern Nigeria (known as the Eastern Region, or Eastern Nigeria) in the last quarter century of colonial rule ending in 1960. The article examines