Village of lepers home to 'outcasts' of society

TANGERANG, West Java (JP): The merciless sun beats down, burning the dusty and rubbled streets in this small village of Serbaguna. At the height of the day, work stops as the call to prayer sounds from the local mosque. Men, wrapped in sarongs line the streets and slowly make their way to the house of worship. Others take shelter from the midday sun under large sprawling trees and becak (pedicabs), slothily waiting for the cool of the evening. A thin breeze filters by and somewhere in the distance a child cries out.

For all intents and purposes, this village, on a 10-hectare plot of government land, is no different to the hundreds of thousands across the archipelago. Except for one thing: its residents are outcasts, rejected by their families and society at large.

They are all former leprosy patients.

The local shop is run by Mariyatin and her husband, Askan, both in their 50s. There's a loose array of produce, from tempeh to fresh vegetables to different kinds of household items.

Clad in Muslim dress, Mariyatin sits behind the counter on an upturned box and nurses a bandaged foot. "It's better living here than outside. We're not accepted there. No one wants to live beside a leper," she said. A swollen leg is testimony to her ongoing battle with the disease.

Her husband maintains people are afraid of him when he goes outside the village. He said he is ashamed. "If I go to the market to buy some things for the shop and the seller knows I'm a leper, he'll throw my change on the ground. He doesn't want to get close. It's particularly true of the Chinese." Askan bears no telltale signs of his bout with leprosy, save for some dry skin on his lower legs. His hands and fingers are normal, but "if someone shakes hands with me they know what I am because my fingers curl inward slightly". The couple have three children, one of whom works at a local shoe factory. None of the children have leprosy and all continue to live at home.

"The village is especially for ex-lepers who can not go back to the community," said Dr. Iwan S. P., chief of training and education at Sitanala Hospital in Tangerang, a leprosarium bordering the village.

"The village is used only for ex-leprosy patients, but others want to live there who have never had leprosy. After three months they are supposed to leave and go back to the community. They don't want to leave though as many have been rejected by the community."

While the villagers are technically illegal residents, as they have been living on government land without permission since 1951, there appear to be no efforts to move them. And that, the villagers say, is not a problem as they will demonstrate if it comes to that.

Dr. Sudurmadji, director of the hospital, said the former lepers began living in the area in 1951 and that most had married other lepers. Currently, there is upward of 2,000 residents. Some work as cleaning service employees but a lot are beggars.

Zaenal, 30, is perched atop his becak, waiting for passengers. He's a two-year veteran of the hospital and believes he got leprosy from Allah. He said he feels comfortable living in the village: "It's hard to find work in other places. People reject me outside of here; they look at me from head to toe and I don't like that. It makes me feel ashamed."

Like many other residents of the village, Zaenal met his wife in Sitanala Hospital. She too was a leprosy patient. They have two children, both of whom are healthy. Driving his becak earns him between Rp 5,000 to Rp 10,000 per day, enough to survive, he said. But that doesn't stop him from feeling sad and worthless.

An uncommon occurrence is for outsiders to marry lepers and then move into the village. But that is exactly what Ibu Sutinem did. A former cook at the residence of a nearby Catholic mission, her husband often drove passengers of his becak to the house. She said at first she was scared of him, but then took pity and felt sorry for the driver. After a while, however, they developed a close relationship and married.

Speaking from the doorway of her miniscule home, Ibu Sutinem said she is about 50 years of age and her husband approximately 60. He begs on the streets all day while she sells nasi bungkus (packaged rice meals) from village door-to-door, earning from Rp 2,500 to Rp 5,000 per day. With three healthy children, two boys and one girl, ranging in ages from seven to 22, Ibu Sutinem sees no problems living in a village whose residents call themselves outcasts of society. (William Furney)