Growing up in a leprosy colony in Tamil Nadu, South India

Abstract

Within the state of Tamil Nadu in Southern India, there are presently 42 active leprosy colonies. The decreasing rate of leprosy in India has not been trailed by a decline in leprosy colonies, but rather, an alteration in the demographic composition of the colonies has occurred. Leprous individuals no longer make up the dominant population of a colony with leprosy colonies now consisting largely of non-leprous children and grandchildren of the patients. Consequently, life in a leprosy colony no longer equates to being a carrier of the physical deformities of the disease. In the 42 colonies spread throughout Tamil Nadu, there are 1056 families consisting of 610 children. Within these colonies, it is extremely rare to encounter a child who has leprosy due to the low rates of transmission among children and the high affectivity of MDT. Despite ridding this generation from the adverse medical impacts of the disease, the stigma of leprosy continues to follow the children. Through connection to a parent or grandparent suffering from the disease, children inherit a stigma of association and as a result experience a spoiling of identity. This spoiling of identity impacts them in various sectors of life, one of which is education. This thesis intends to examine the lives of the children growing up in a leprosy colony in Tamil Nadu, as well as understand the stigma of leprosy as it impacts children in their access to education. In the past, education has not always been a guaranteed right to children hailing from leprosy colonies, being denied largely based on their association to the disease. Yet, the situation is changing as children from colonies begin to access education and integrate into schools within society. The ability to secure education often implies that the present generation no longer suffers from the stigma of association. However, this thesis shows that stigma continues to taint the colony children’s identity, influencing the way in which education is secured