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Triumph of the
survival spirit Peculiar
people,amazing lives Leprosy, Social Exclusion and Community Making in
South India
The people of Bethany Colony referred to the disease as jhabu, a colloquial Telugu word for the disease. They also called it aha rogi (great disease) or pedda rogi (big disease). The stigma attached to leprosy in the India of the 1950s forced the formation of a community of leprosy patients. The author looks at the disease and its perception historically. He describes how the disease evolved from being thought of as hereditary in 1862 to a highly contagious one that was a threat ‘not only to the physical well-being of the nation, but to the whole Empire’. Rejection was more haunting than being displaced. A victim puts it succinctly: "After being discharged from (the leprosy) hospital, where could we go? So we came to settle down here." With nary a spark of light in their world, a few persons began living together on a rough patch of land, later called Bethany Colony. The arrival of Christian missionaries in this field is also studied in detail. They introduced the concept of wholistic treatment – one that had love, companionship mingled with medicines – to these rejected persons. Missionary presence, understanding of indigenous literature and locally evolved stories give a perfect understanding of the theme. "Through my body I can understand more than know through my own or another’s society`85" This excerpt brings out the affected person’s understanding of the disease. Changes in the body of the affected person marked the onset of a whole new experience marred by social exclusion, rejection and disfiguration. As the disease snaked through the body, it not only harmed the exterior, but also scarred the person as a whole. These changes forced the affected person to find other ways of coping with life. The connotation of the ‘body’ as a symbol of an inter-dependent group of people is formed here. It highlights how one got used to the sight of disfigured faces; no more did one gawk or feel pity for the persons of the colony. Creating idioms for themselves and bringing out new ideas to live peacefully with one another, the members of the colony slowly scripted the process of forming into a community. Caste also had a unique meaning in Bethany. Oka kulam, oka matam, oka jabhu (One caste, one religion, one disease). This is how the people of Bethany saw themselves. The residents of this community had carved out a comfortable niche for themselves. Suddenly rejected due to their disease, they found themselves ‘caste-less’, and could no more identify themselves with castes, which they earlier belonged to. This led to the formation of a new identity, one that protected and did not alienate. Although the original values of caste were still embedded in the minds of the people of Bethany, the new concept was re-framed to suit their immediate needs. The missionaries also had a role to play in the formation of a new meaning of ‘caste’. Finding acceptance in the Christian teachings and seeing the work of the missionaries, the people of Bethany felt they were part of a sanghamu or community. It gave them a sense of security; one they couldn’t fathom as receiving from the rest of the society that had branded them outcastes. Just forming into a community was not enough. They had to find a means of earning their bread. Begging thus became an occupation. Groups of people initially went out together, singing songs, and seeking alms. Later on, they broke up into groups of two. Some persons even left for Mumbai where begging was more lucrative. The research not only traces this form of earning bread, but also shows how it was a negative aspect of community building. The process of moving from being complete outcastes to having an identity was a great change for them. It also gave them the courage to venture beyond their boundaries to the society outside. Through dramas, and the formation of various interest groups, they reduced the estrangement. It also made the healthy members of the society understand the people of Bethany more. This book is an excellent study. With first-hand accounts, use of informants, and in-depth study of leprosy and those affected by it, the author paints a different picture of the issue than what traditional notions teach. In short, it brings out the beauty of the human survival instinct and embraces a community that has always been misunderstood.
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Leprosy