Leprosy, the key to another kingdom.

OBJECTIVE: In India, many people affected by leprosy still live in self-established settlements, commonly referred to as leprosy colonies. Aid organisations generally attribute the social segregation of colony members to the stigma attached to leprosy. In this article, I argue that the common approach towards leprosy colonies is actually based on a limited understanding of social relations between colony members and others. The insights from this study will hopefully facilitate re-thinking current approaches to stigma reduction in leprosy.

DESIGN: An ethnographic study conducted over a period of three months in and around a leprosy colony in India. With the help of a local research assistant, I carried out semi-structured interviews, informal conversations, and participant as well as non-participant observation. I conducted interviews with 22 colony members and 25 residents from the adjacent neighbourhoods of the colony.

RESULTS: This study reveals that the differentiation between colony members and others derived at least as much from community membership as from stigma. Leprosy-affected people living outside the colony, for example, perceived the colony members as widely different from themselves, whilst stigma affected both groups. Programmes with the aim of reducing stigma need to approach stigma relations as embedded in various interrelated physio-emotional and socio-cultural processes, rather than approaching social aspects of leprosy by focusing exclusively on the notion of stigma.