The lepers of India: Still untouchable

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.”

India declared treating certain castes as untouchable in 1950 and the constitution reserves around 20 percent of government jobs for people from those backgrounds. But even today lepers, and their children, are virtual untouchables, regardless of their caste.

According to a 2007 survey conducted by the International Association for Integration, Dignity and Advancement, leprosy-affected families across India face serious discrimination. Of 4,512 leprosy-affected persons surveyed, 1,259 were illiterate. Most of the children were not in school, and only 30 were in college. The job market was tough on them, too, with 712 people begging for a living and another 994 unemployed.

Despite the discouraging statistics, Arjun and the several other young men I met in New Seemapuri put a brave face on things, downplaying the handicap that living in a known leper colony places on them. Older men, like 28-year-old Kaimuddin Khan and 32-year-old Bhupender Kumar, have resigned themselves to the idea that their lives will likely be circumscribed by the boundaries of the leper community. But they focus on the positive.

“We have opened a small shop with the help of a government scheme for leprosy-affected people,” said Kumar. “We’re actually squatting illegally on the property, but because this is a lepers’ area nobody bothers us.”

However, youngsters like 17-year-old Tipu Sultan, who is studying in ninth class, still dream that one day they can live integrated lives. “As long as I keep studying, everything is fine,” said Sultan. “I don’t think I have any problems now because my Mom and Dad have leprosy. But I can’t say what will happen in the future. I do feel I will be able to get a job, but I don’t know where. My wish is to get a job outside of the colony, but I don’t know if I can.”