Using Campaigns to De-stigmatize Leprosy in India

Abstract

Both health communication scholars and practitioners concede the seriousness of stigma in several disease contexts. But the literature on how to deal with it and possibly reduce or remove it is thin. The case of leprosy in the Indian state of Madhya Pradesh, however, illustrates a simple, innovative and community-grown strategy to combat stigma. Supported by the government and designed by the Danish International Development Agency’s Leprosy Unit (DANLEP), the strategy relied upon a small band of trained and motivated leprosy workers. Their main task, among other things, was mobilizing the community. The community was at first cautious, but it began to perceive the benefits in leprosy worker’s effort and argument, and began approaching the afflicted. The community’s concern transformed the patients’ worldview. They grew to be less ashamed of their health condition and themselves. The growing participation of the community in the state transformed leprosy into an ordinary treatable disease. This transformation did not come about at one go, but in slow, sometimes tentative, but measured steps. This article describes the process of demystifying leprosy. It shows how the three important stakeholders (3Ps)—persons with leprosy, persons with concern and providers of health services—forged a strategic alliance that not only helped eradicate leprosy but also deal with the more intractable issue of social stigma attached to the disease. If leprosy is a common ailment today, it is to a large extent due to community participation. The article emphasizes that if health problems are identified and approached through the community, not only are fears and misconceptions of community removed, but the community reinvents itself to bring about desirable changes.