Thanks to advancement in early detection and free drug therapies, the rate of new cases of leprosy in India is at an all time low. Despite advancements, however, victims of leprosy and their families in the over 1,000 active leprosy colonies continue to experience isolation from the rest of society. Originally formed to isolate the patients from society, these colonies now include the children and grandchildren of those with leprosy who are free of leprosy themselves. These children, one to two generations removed from the disease, remain in the confines of the colony to care for elderly family members and / or due to poverty and illiteracy. Despite their isolation, these colonies provide a place of belonging, solidarity, and refuge from broader society. Strong family and cultural norms also encourages family members to stay within the colony.
Children in the colonies are unique in that they are intimately connected to a family member with leprosy and yet because they are free of the disease, they are able to fully integrate into Indian society. Unfortunately, the social burdens and stigmas associated with leprosy continue to limit a child’s opportunities, especially in regards to education. While these limiting factors are complex, most are related to poverty, family expectations, and a desire for the child to move into the labor force. The Indian government and press have done a good job eliminating much of the social stigma of leprosy but some remains, even in the minds of the afflicted families themselves. Also, education comes at a cost. Even a small cost is beyond the means for most families in a leprosy colony where their means of making a living consist of begging and day labor.
Poverty is not unique to a leprosy colony. Growing up in a colony also means communal bathrooms, one common water well for the entire village, and other marginal infrastructure. Another major issue is loss of caste (identity and heritage), important in Indian society. A quote from a village leader: “when we were normal we used to view ourselves by our caste, now that does not matter. We first see our disease, this is our identity. People see us as removed from caste, we are treated as untouchables.”