Interrogating leprosy ‘stigma’: why qualitative insights are vital

Abstract

I was initially in two minds about editing a special issue on ‘stigma’. The term, it seemed to me, was one too often applied uncritically to bodily conditions – especially in relation to leprosy – as a vague gloss for a qualitatively diverse range of negative social reactions and attitudes, as well as a description of how they might be experienced. As such, ‘stigma’ can become a lazy shortcut for the multiple ‘social aspects’ of leprosy, preventing deeper scrutiny of the complex and sometimes contradictory experiences that are characteristic of living with the disease. At the same time, however, devoting a special issue to the topic also offers a valuable opportunity to address precisely those issues: to interrogate how, if at all, ‘stigma’ might remain a conceptually useful notion through which to analyse the experience of those whose lives are touched by leprosy, whether as sufferers, family members or those working in the leprosy field. It also provides a chance to showcase alternative approaches to understanding attitudes towards the disease that go beyond the conventional, taken for granted wisdom which states, a) that leprosy is a uniformly stigmatised disease, and b) that education about its causes and treatments is necessarily the appropriate response to managing that stigma. A critical focus on stigma allows us to ask, for example, questions about the socio-cultural, historical, economic and political contexts in which stigma is produced. It also enables us to consider how stigma, as it is currently configured and used, might also be a barrier to understanding the social experience of leprosy. These were the kinds of questions thrown out in the call for papers for this special issue, and I have been both impressed and encouraged by the responses, which together subject ‘leprosy stigma’ to a more rigorous critique than I could have hoped for. Several of those responses come from my own discipline – anthropology – rather than from the clinical sciences that make up the bulk of contributions to Leprosy Review, and I confess to a bias towards the long-term qualitative work for which anthropologists are best known as a route to understanding the complex socio-cultural, historical and political implications of leprosy. Such research does not begin with hypotheses to be tested – which