A critical comparative ethnographic study of courtesy stigma in two leprosy-impacted communities in Indonesia

Leprosy stigma is more neglected than the disease itself since global interventions towards leprosy are focused on the medicalisation of individual-sufferers and statistical counting of documented cases and less prioritising the impact of leprosy stigma towards society. This paper examines the impact of courtesy stigma on society through comparative ethnographic method conducted in two sites in East Java Province, Indonesia. Investigation in the first site, Mandangin Island, found that the island suffers underdevelopment of public facilities such as clinics and clean water and migration and medical knowledge bottlenecks. In the second site, Sumberglagah village, leprosy patients and the community they live with are also socially separated from the locals and they are engaged in controversial businesses exploiting the public fear of leprosy. This study finds that leprosy stigma in two leprosy-impacted communities in East Java, Indonesia, does not only isolate individuals but also a whole community from a bigger society regardless of whether all of the community members have leprosy. This study also detects problems related to leprosy education within the two impacted communities. It is suggested that efforts to address the problems require holistic approaches and commitments from various actors in the area in complement to existing global health missions.