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Indonesian Lepers Still Face Discrimination, Despite Successes in Battling Disease


The World Health Organization says the number of patients suffering from leprosy worldwide has fallen by nearly 90 percent over the last two decades. But the age-old ailment, also known as Hansen's disease, is still claiming new victims, and lepers continue to face a serious discrimination and ostracism.

At Sitanalan Hospital in the Jakarta suburb of Tangerang, laundry is hanging out to dry, and goats wander around on the grass. Ibu Ai, or Mother Ai, a 65-year-old diagnosed with leprosy eight years ago, sits alone on the hospital patio.

Ibu Ai says that when her husband learned of the diagnosis, he promptly divorced her. No family members have ever come to visit, she says.

They're all scared of the illness, she says. The people in my town are afraid. My family is afraid.

Ai has lived at the hospital ever since. She says this is her home now, and the people here are her family.

"Everyone here is my friend, they are like sisters and brothers - it's like a leper nation."

Leprosy is a bacterial disease that attacks the nerves, causing paralysis. It can also lead to skin lesions, gangrene, and eventually, the deformities for which the disease is notorious.

Nowadays leprosy can be cured with antibiotics. And if it is caught early it can be stopped before causing major physical damage. But an aura of fear still surrounds the disease.

Ibu Ai is lucky. She and a handful of other retirees live here rent-free. Younger patients who are cured are expected to go home and support themselves, and that can be a difficult struggle.

Inside the men's ward, Dr. Handoko Soewono asks 30-year-old Sa'um if he has made plans to go home yet.

Sa'um sits patiently while the doctor examines the blackened skin around his ankles. He has a wife and three children to support. His thin, sinewy body suggests a life of hard work and few rewards. Still, he smiles warmly and says he hopes to go back to his job as a street vendor.

"Mie ayam," he tells the doctor. I will go home whatever I can. He tells the doctor he will sell noodles again, or anything else he can sell.

Handoko is supportive and upbeat. But later, in private, he reveals his concerns. People don't want to buy food from lepers, he says. Some of his patients wind up begging on the street. Some even use makeup and fake bandages to make themselves look more pitiful.

Handoko runs a small program to teach the patients skills, such as farming and handicrafts. He writes letters to employers explaining that the patients are no longer contagious and can go back to work. And sometimes, he succeeds.

He says there was one patient who came to him as a child. Two or three years ago he came back to see him as a grown man. He says the man had become a lieutenant in the army.

Handoko says that is when he feels that his treatment has really made a difference: when his patients can go home, get a job, and lead a normal life.

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