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Strengthening the Foundations of a Support Group for Persons Affected by Leprosy in Indonesia

Indonesia, the site of this project, eliminated leprosy as a public health problem in 2000. Over the past decade, however, the number of new cases reported each year has exceeded 15,000 (17,439 in 2019) making Indonesia the third most endemic country for leprosy after India and Brazil.

Nganget  village in East Java has its origins as a leprosy colony built by the Dutch colonial government in the 1930s. After a leprosy hospital was established, a community formed of people who continued living in the vicinity following treatment because they were unable to return home.

Many people who have been treated for leprosy live in such recovery villages but their  children move away for education or work to escape the stigma attached to living there. Consequently, the residents tend to be older people.

SATU JALAN BERSAMA(’JALAN’)is an NGO that organizes work camps in leprosy villages. Through the work camps, participated in by young people from Indonesia and Japan, JALAN aims to break down barriers between the villages and the surrounding community.

Typically, students stay in the villages for several weeks, interacting with residents while working on cleanup activities and infrastructure projects—activities that Sasakawa Health Foundation has supported for the past 10 years. In the process, the attitudes of the surrounding communities toward the villages change as they see what is taking place.

Having started out as a volunteer organization, in December 2019, JALAN acquired legal status in Indonesia as an NPO. It decided to take this step in order to expand its activities and it did so encouraged by the positive impact on the Japanese and Indonesian students participating in terms of their personal growth and the success of the camps in contributing to eliminating prejudice against the villagers.

Nadhila, Executive Director of JALAN (right), with residents of Nganget village

JALAN aims to realize “a society in which persons affected by leprosy and their families are not deprived of their smiles by discrimination.” To that end, they have positioned work camps as the pillar of their operation, and are also implementing social awareness projects such as photo exhibitions. As a new initiative, they also have plans to launch a program to provide education and employment support for young people from the villages.

In FY2020, SHF provided support for JALAN to create a network to develop these new initiatives. The network is designed to recruit collaborators from Indonesia, where JALAN’s activities are based, and from Japan, a source of many student volunteers for the work camps.

Because of the coronavirus pandemic, JALAN has had to refrain from activities to obtain sponsorship. Instead, it fundraised by creating a website, distributing information about its operations to 128 companies and five organizations in Indonesia and Japan, and participating in online events to introduce the organization’s activities. As a result, it was able to raise US$6,243, almost enough to hold three work camps.

For World Leprosy Day on January 31, 2021, it conducted an awareness campaign, creating pin badges that it placed in partner shops to solicit donations. The badges were a patchwork design of traditional Indonesian batik with the messages “Accept persons affected by leprosy” and “Restore broken hopes.”.

Pin badges for raising awareness. The badges are a patchwork of traditional Indonesian batik.

Into FY2021, work camps remain on hold, but JALAN is moving ahead with its plan to launch an education and employment support program and is currently conducting a needs assessment survey in preparation.

 

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Pamphlet (Bahasa Indonesia) PDF

World Leprosy Day leaflet (Bahasa Indonesia) PDF