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‘Not To Be Feared’

Indonesians Who Have Experienced Leprosy Combat Discrimination

Jongaya Village is one of Indonesia’s last remaining leprosy settlements. The village – located in the South Sulawesi Province – is home to around 1300 residents, according to Al Qadri, an activist and person who has experienced leprosy. Though the World Health Organization reports a gradual decrease in leprosy cases around the world, Indonesia accounts for the third-most annual cases, with around 17,000 cases reported every year. Indonesians with leprosy were once forced to live separately from their friends and family in quarantined communities like Jongaya, but current residents have chosen to move to the housing complex to escape discrimination. However, Qadri believes that improving public education on the disease could reduce the negative stigma toward people experiencing leprosy and encourage them to seek critical medical treatment. *Video includes audio descriptions for blind and low-vision audiences. *Read along by clicking the cc button on your YouTube player.

*Click here for the Bahasa Indonesia version of this story.

Photo of Dija.

Filmmaker: Dija

Dija, who has a single given name and no surname, is chairperson of the Association of Indonesian Women with Disabilities (HWDI)’s branch in Simbang in the Indonesian province of South Sulawesi. She is also a board member of the Section Indigenous Community, a sub-section of HWDI’s branch in South Sulawesi. Dija first became involved with HWDI over three years ago. Its mission includes advocating for the social development of women with disabilities and improving their quality of life. The organization champions equal opportunity and full participation for women with disabilities.

Dija also has been active in a participatory planning and budgeting system in Indonesia known as “Musrenbang.” During in-person and online forums, local governments engage citizens in discussions on community aspirations and priorities. Last year with HWDI South Sulawesi, Dija advocated for a Musrenbang focused on disability. She worked with two offshoot groups of HWDI to accomplish this  - Self-Help Group Batubassi Pammase and Self-Help Group Panrita. Both groups work to support Indigenous persons with disabilities in their respective communities. As a result of their advocacy efforts, the local government integrated disability into a pre-existing “Thematic Musrenbang for Women and Children” to form the “Thematic Musrenbang for Women, Children, and Disability.” Dija is a member of the Simbang District delegation at another local “Musrenbang,” representing Indigenous women with disabilities. 

At HWDI South Sulawesi, Dija also collects data on Indigenous persons with disabilities in Batubassi, a village in South Sulawesi, with Self-Help Group Batubassi Pammase. She assists with cases of sexual violence against women with disabilities in South Sulawesi’s Maros Regency with a Self-Help Group Batubassi Pammase companion. Dija is a children’s rights advocate, too. She joined a network of women’s and children’s organizations in the Stop Child Marriage Campaign Coalition in Maros Regency.

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