Burying the Stigma of Survivors in Tangerang Leprosy Village

Since 1951, Tangerang City has had a hospital that focuses on serving people suffering from leprosy. The hospital, which was named the Sitanala Rehabilitation Center, was inaugurated by the first Indonesian vice president, Mrs. Rahmi Hatta.

The name Sitanala itself is taken from the name of a doctor who is specifically dedicated to treating lepers in Indonesia. he is dr. JB Sitanala.

Since its inception, the existence of the Sitanala Hospital has been very helpful in treating people suffering from leprosy. In fact, then the area around the hospital was named Leprosy Village.

Quoting the website of the Indonesian Ministry of Health, Leprosy is a type of disease caused by a bacterium or leprosy germ named ‘Mycrobacterium Leprae’ which attacks the skin, peripheral nerves and other organ tissues.

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Leprosy is also known as an infectious and chronic disease with an incubation period of 5-10 years which can be cured with routine and intensive treatment.

A leprosy survivor during his afternoon activities at his house in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

The World Health Organization or WHO (WHO) has officially established World Leprosy Day to be commemorated every Sunday in the last week of January. For 2023, World Leprosy Day falls on January 29, 2023.

The purpose of his commemoration is to increase and create awareness among the world community regarding knowledge about leprosy.

Leprosy Village is located in the village of Karangsari, Neglasari District, Tangerang City, Banten Province. The location is not far from the Regional General Hospital of Tangerang Regency.

Leprosy survivors in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

The existence of Leprosy Village itself is very helpful for leprosy survivors who have been stigmatized by the general public such as being unable to continue their education, having difficulty getting a job, being ostracized from the environment, being rejected at public facilities, divorced by their partners, and even being rejected from health care facilities.

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However, by choosing to live and live in one area, this is also so that their health can be easily monitored by the Sitanala Hospital, which at that time was the Leprosy Rehabilitation Center.

In the Tangerang leprosy village, they live in groups, are compact, help each other and strengthen each other as survivors and even ordinary residents. Because they were already negatively stigmatized, leprosy survivors felt they had been ‘thrown out’ and ‘alienated’ from their village of origin even though they had been declared cured. But their physical condition does look different from most normal people.

Leprosy survivors husband and wife, Mr. Sumanta (73) and Mrs. Aisyah (66) during their afternoon activities in the Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

Ibu Aisyah (66) previously told how she and her fellow survivors received negative views from society who saw her physical condition. Shunned by people, not even getting a job like normal people in general.

“In the past, we were kept away from people, people were afraid to see us. It’s hard to find a job,” said Aisyah’s mother when met with several other leprosy survivors who were working as onion peelers, Sunday (29/1/2023).

At first glance, Ibu Aisyah looks like a normal person in general, but she is not ashamed to show her 2 hands that have been affected by leprosy in the fingers.

“We don’t want to get sick like this, but we are given a trial like this, so we just accept it,” said Mrs. Aisyah.

Pak Sumanta (73) sits at the guard post in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

Not far from where Aisyah’s mother and her friends gathered, Aisyah’s husband, Pak Sumanta (73) was seen sitting alone near the patrol post. Pak Sumanta is also a survivor of leprosy in his hands, but Pak Sumanta is also blind.

Currently, the atmosphere in the Tangerang Leprosy Village is much more conducive. The community can and is used to living side by side and mingling with leprosy survivors. They have buried negative stigma and discrimination deeply and have only made it part of stories from the past.

Leprosy survivors working as onion peelers in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

In fact, leprosy survivors whose average age is over 60 years old already have many children and are married to people from outside the leprosy village. Having a father or mother, grandparents or grandparents who incidentally are leprosy survivors is no longer a terrible threat to their next generation.

For information, the Indonesian Ministry of Health has targeted leprosy elimination in 2024. This is because according to data from the Ministry of Health for 2022, the number of leprosy cases in Indonesia is still the 3rd highest after India and Brazil. Even data for 2021, there were 7,146 new lepers in Indonesia, with a proportion of children of 11%.

Leprosy survivors working as onion peelers in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)Activities of leprosy survivors mingling with residents in Leprosy Village, Neglasari, Tangerang City, Banten, Sunday (29/1/2023). (source: SuaraSerang/Wawan Kurniawan)

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