Living leprosy in Vietnam: care, affliction and agency in the shadows of a cure

Abstract

Today in Vietnam leprosy is deemed to be on the threshold of elimination as a result of a concerted public health program and the decades-long application of an effective multidrug cure. However, many thousands of people continue to live with the painful, debilitating and degrading effects of this chronic disease. Although integrated community care is the prescribed model for treatment, most leprosy sufferers still live in exclusive communities for leprosy patients. Despite official efforts to cure, normalise and destigmatise the disease, people with severe leprosy symptoms are readily visible in public spaces where they excite abhorrence and compassion among the alms-giving public. Presenting the results of ethnographic fieldwork in Quy Hoa leprosy village in South-Central Vietnam, one of the largest communities for leprosy sufferers in Vietnam, this thesis seeks to examine the lived realities of people afflicted with leprosy and account for the unexpected resilience of this disease. Through ethnographic exploration of the life experiences of leprosy sufferers, the thesis investigates the tenacity of leprosy as a lived reality and multidimensional affliction. The study examines the ethics and modalities of care for leprosy-afflicted people and their embodied memories as subjects of care and neglect. Exploring the reactions provoked by a disease diagnosis, the thesis tracks into the cultural construction of an affliction which, until only a generation ago, condemned its victims to social degradation and exile. Examining the therapeutic benefits to leprosy sufferers of living in segregated communities for people with the same disease, it documents the harmful persistence of leprosy stigma in the face of public health approaches designed to normalise the disease. It describes the chronic complications, disabilities, physical disfigurement and shame with which many leprosy sufferers live in the shadows of a dominant biomedical construction of leprosy as an easily curable disease. This research shows that the resilience of leprosy derives from its ingrained power as a cultural symbol and embodied identity. Public health discourses that declare leprosy to be on the verge of eradication exist in tension with the lived experiences of leprosy sufferers and the survival of popular images of the leper as a figure of misery and compassion. The thesis finds that while leprosy is debilitating, it also can be productive. The symbolic power of leprosy is instrumentalised as a form of illness capital by leprosy sufferers who display and enact the disease to secure charitable assistance in the context of declining state welfare support. The analysis thus sheds light on the multiple dimensions of care, embodied affliction and agency that contribute to the tenacious survival of this disease. Show more