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Leprosy in India declines but the stigma still remains

A close-up on Asia's largest colony
Leprosy in India declines but the stigma still remains

A man walks near Tahirpur leprosy village on the outskirts of New Delhi

Published: January 24, 2014 08:10 AM GMT
Updated: January 23, 2014 10:19 PM GMT

By all appearances, Sunita Chandrkumar has a good life.

The 30-year-old with black braids and dear face runs a small kiosk at the local hospital and lives with her husband in a yellow two-room house on the outskirts of India’s capital, New Delhi.

The couple have two children, a son, 15, and daughter, 11. But when asked where she lives, she gives the wrong address. Her children do not live with her either, residing in a hostel in another district.

"I miss them, but they shall grow up somewhere else, not in the colony. That’s the main thing,” says Sunita.

The colony, Tahirpur, is a district in Delhi for people with leprosy, also known as Hansen’s disease. It is the largest colony of its kind in Asia.

About 20,000 people affected by the disease live there, along with their families. Leprosy causes nerve damage that results in the loss of sensation of pain. Feet, legs and hands become vulnerable to injuries, leading to infection and, often, loss of extremities.

With antibiotics, the disease is treatable, so most residents of Tahirpur are healed today. The second generation, like Sunita, has never been affected at all.

Sunita chooses to live in the colony for a variety of social and financial reasons. Cultural mores dictate that she stays with her parents, who came to the colony because of the disease. Free housing, provided by nongovernmental organizations, dictate that she stays, as her meager living does not provide enough income for suitable housing.

Nevertheless, the people from Tahirpur have little contact with society outside the colony. If they disclose where they live, they don't get hired. Typically, they are not invited to celebrations of their larger family. And when they are, other guests keep their distance. To find marriage partners from outside the colony is nearly impossible. They are forced to stay among each other, trapped by the stigma.

“At lunch time my colleagues will share their food, but not with people from the colony,” says Sujalha Lal, 29, a colony resident who works as a school assistant with four other women from Tahirpur.

"The five of us have lunch together, but that hurts a lot. We are also human beings and we have not done anything wrong," she said.

India has made great efforts to eliminate leprosy, with newly reported cases at less than one per 10,000 people, according to World Health Organization statistics. While medically the illness is under control in India, the social stigmas associated with the disease are not.

"Leprosy can be treated but with the stigma it is more difficult,” says Ranjan Kumar Souramya from the Leprosy Mission Trust India, one of several NGOs assisting Tahirpur residents.

To better serve the community, many NGOs have shifted their focus from medical care to community building. The organizations offer sewing or computer courses and encourage people to organize self-help groups and raise their voices.

As the first generation of colony residents age, concerns about what happens to their children have surfaced. Muhammed Siddique has lived in Tahirpur for 50 of his 64 years. Also sharing his small home are his son, daughter-in-law and grandchildren.

"When I die, there will be no one left with leprosy. Then my son will lose the house. That worries me a lot," says Muhammed.

His son will be forced to leave because he doesn’t have leprosy and because there is a waiting list of families afflicted with leprosy in need of homes within the colony.

Nirmala, 20, has been living with her husband and infant son Rahul in a dorm operated by Mother Teresa’s Missionaries of Charity. The dorm is home to 288 leprosy patients who receive medical care there.

The three month old boy shares a bed with his mother, which she can manage because the child is so small. Nirmala hopes they can move to a house in Tahirpur soon to provide the family with some sense of normalcy.

According to Hindu custom she has colored the edge of her baby’s eyes and has painted a black circle on his forehead, to keep evil away from him.

"He shall be exempted from leprosy," she says. "That's all I wish for my future."


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