Connect to share and comment

The lepers of India: Still untouchable

A new generation of lepers has never been infected with leprosy.

A leper shows a voter identity card outside a polling station in Mahanadi Vihar, about 26 miles south of the eastern Indian city of Bhubaneswar, April 23, 2009. (Jayanta Shaw/Reuters)

NEW DELHI, India — When 20-year-old Arjun Nair's father discovered that he had contracted leprosy, he was so afraid of transmitting the disease to his sons that he immediately sent Arjun and his brother away to a hostel school run by missionaries.

Some 10 years later, Arjun is back in Delhi, his education still incomplete, and his job prospects dim. “Originally, the school offered classes up to 12th standard,” said Arjun. “But they had a lot of problems with fights breaking out between the older kids, so they sent the older kids back home.”

A resident of a modern-day leper colony in East Delhi comprising the neighborhoods of Tahirpur and New Seemapuri, Arjun is part of a curious group of second-generation Indian lepers. These youths have never been infected with leprosy, but remain trapped in an ostracized welfare community because of the dreaded disease's assault on their parents.

Subsidized by the government and often educated by Christian missionaries, they suffer from all the social problems that affect the marginalized around the world, from India's transgender hijras to Europe's Roma, said Vineeta Shanker, executive director of the New Delhi-based Sasakawa India Leprosy Foundation (SILF).

“They have internalized the societal rejection,” said Shanker. “They say, 'Even when we go to government schools, the teacher puts us in a corner. She doesn't put us in the first row. We have no friends except girls from our own colony.'”

Leprosy is today curable and it is far less infectious than once believed — 95 percent of people are immune and it cannot be transmitted by casual contact, as many people fear. Though its complete eradication is considered to be medically impossible, India officially “eliminated” the disease in 2005, after a targeted program reduced the level of incidence to fewer than one case per 10,000 people. So the only real reason for isolation colonies like Tahirpur and New Seemapuri is ignorance. Sadly, India has that in abundance, which is perhaps why the country still has more than a thousand leper colonies.

For second-generation “lepers” isolation cuts deeply. Feelings of alienation strain the relationships between parents and children, who depend on their parents' government stipends and income from begging for survival, but also resent the social stigma that comes along with that money. And at the same time, their understanding of the working world is perhaps even more limited than their opportunities.

“The kids want to do well. They have high aspirations. Everybody we talk to says, 'We don't want an ordinary, low-paying job. We want at least 10,000 rupees a month; otherwise we aren't interested,'” said Shanker. “But they have very little to enable them to achieve their goals.”