Ex-patients continue to fight stigma

New skills: A former leprosy sufferer is retrained in carpentry. JP/Tarko SudiarnoHousewife Sriyatmo has spent most of her life struggling for respect and dignity. Since first being diagnosed with leprosy at the age of eight, Sriyatmo lives with stigmatization.

She was only in second grade when she discovered scaly white blotches on her arms and, later, on her entire body. They were neither itchy nor painful.

“I just felt that my arms and other parts of my body became stiff,” she told The Jakarta Post.

Her long struggle began when doctors diagnosed her with leprosy. “People said I had contracted hereditary leprosy. But, where did it come from? I had no relatives from whom I could inherit the disease,” she said.

She also could not be sure that someone might have infected her with the diseases as none of her neighbors had leprosy, a chronic disease that affects parts of the body and the nervous system, especially peripheral nerves.

Shortly after graduating from junior high school, her parents sent Sriyatmo to live with her grandmother who helped her obtain medical treatment at Sitanala Leprosy Hospital in Tangerang, Banten.

Living with leprosy-affected people has made her understand that leprosy, often called Hansen’s disease (HD), is neither a hereditary nor contagious disease as assumed by most people.

With early diagnosis and proper treatment, leprosy can even be cured.

“The earlier the treatment is started, the better the hope of a complete recovery,” said Sriyatmo.

She was one of 40 former leprosy patients who attended the Bina Nusantara (BINUS)-Teach for Indonesia Declaration on Monday. The event was held by the university to tackle social economic problems, such as gender inequality and discrimination against disabled persons, including people with leprosy, by using Millennium Development Goals (MDGs) as a framework.

During the event, they shared their experience in battling stereotypes and stigma in the country that is still not accepting of people with such a disability.

According to the Health Ministry, the number of new leprosy cases detected as of Dec. 31, 2010, was 17,012 with a registered national prevalence of 7.22 per 100,000 people.

East Java recorded 4,653 new leprosy cases in 2010, or about 30 percent of total cases, making it the province with highest number of leprosy-affected people in Indonesia.

Madura and north coast areas, including Sumenep, followed by Probolinggo, Jember, Pamekasan, Bangkalan, Tuban, Lumajang, Pasuruan, Sampang, Situbondo, and Surabaya, are areas with the highest number of leprosy cases.

Indonesia itself ranks third in the list of countries with new cases of leprosy, behind India with 126,800 cases and Brazil with 34,894 cases.

Deputy Director and Migrant Human Rights Coordinator at Asian Migrant Care, Lily Purba in Hong Kong said people with leprosy, especially women, were susceptible to stereotypes and stigma.

Harry Hikmat, head of the Social Welfare Research and Development Agency at the Social Affairs Ministry, said the government had established social rehabilitation programs that included leprosy-affected people as one of the beneficiary clusters.

Citing an example, he said that only Rp 5 billion (US$560,000) of a total Rp 180 billion of social rehabilitation funds for disabled people (ODK) delivered by the ministry were allocated for people with leprosy.

During the event, the BINUS-Teach for Indonesia program gave Rp 11.1 million in financial aid for a leprosy survivor group.

“It aims to help them start businesses so they can be economically independent,” said Intan Setiady, coordinator of Teach for Indonesia.

Surviving the disease, Sriyatmo now dedicates herself to establishing informal learning groups specially designed to educate children with leprosy or those whose parents have contracted the disease.