NEXT GENERATION: If I don’t do something, who will?

Head of PerMaTa South Sulawesi
S.Kep., Ns. (Bachelor level nursing degree)

When I was first diagnosed with leprosy in 2012, I felt my life had been destroyed and there was no hope. I thought about committing suicide. Now, eight years later, I have confidence and I feel that my life is meaningful because of the support that I have received from PerMaTa Indonesia.

I live in a regency called Gowa in the province of South Sulawesi. In 2012, a new branch of PerMaTa was being established in Gowa, and I was invited by the leprosy officer who treated me to join a meeting. Even though, at the time, I had absolutely no idea what PerMaTa was, I was elected to be the head of the Gowa branch of the PerMaTa board.

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Distributing staple foodstuffs to persons affected by leprosy in Gentungan village, Gowa District, on May 21, 2020.

I wanted to cry when I was elected because I didn’t know what to do. But my heart said just try, and as time goes by you will understand. And indeed this has happened.

I have a nursing degree. I had wanted to be a nurse in order to work in a hospital and improve my own standard of living. After joining PerMaTa, my dream for myself changed. PerMaTa is the only organization by and for people who have or have had leprosy in Indonesia that aims to eliminate stigma and discrimination. I experienced this stigma and discrimination myself, and I relate to the experiences of other people who have or have had leprosy. If I don’t do something, who will?

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Packing foodstuffs to be distributed to persons affected by leprosy in Romang Lompo village, Gowa District, on May 20, 2020.

With the support of PerMaTa friends and various donor supporters, I now serve as the head of PerMaTa Indonesia for all of South Sulawesi province. Activities that we carry out at PerMaTa include awareness-raising about leprosy in the community, advocacy to the government, empowerment of people who have or have had leprosy, socio-economic assistance, and assistance to people who are experiencing leprosy.

Since the end of 2019, the world has been shocked by the COVID-19 outbreak. In this situation, people from marginalized groups such as people who have or have had leprosy are largely unable to access government assistance.

With the support of Sasakawa Health Foundation (SHF), we are doing several things, such as awareness-raising about COVID-19 to people who have had leprosy and their families, providing personal protective equipment, providing basic foodstuffs, providing psychological support, and advocating to the government regarding assistance.

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Distribution of masks and soap to persons affected by leprosy in Masino village, Takalar District, on May 21, 2020.

We are grateful that the lockdown has been lifted so that we can go out of our homes and carry out our activities, but compared to before there are differences. We are obliged to comply with the “new normal.” We used to go into the homes of people affected by leprosy. We would come close to people and touch them. Now we avoid touching and we try to talk outdoors. This is difficult for everyone. I hope that I can give them enough support and motivation, because I know from my life experience how very important this is.

PerMaTa (Perhimpunan Mandiri Kusta) Indonesia is a nationwide people’s organization established in 2007 to eliminate stigma and discrimination associated with leprosy. PerMaTa South Sulawesi is the largest provincial branch.


NO.101 DECEMBER 2020