|Paulus Manek is readied for a TV appearance (left) and hands information about PerMaTa to a prospective member in Ambon, Maluku Province (right).|
In the various discussions I attended together with Paulus Manek, I had the chance to hear him explain to government officials, TV viewers, and persons affected by leprosy what motivates him in his work as chairman of PerMaTa, Indonesia’s organization of persons affected by leprosy founded in 2007.
Paulus, who was born into a poor family, contracted leprosy as a boy, but neither he nor those around him knew the significance of the white patches that had appeared on his skin. His mother took him to see a doctor, who prescribed some medicine that he took for a year and a half. It wasn’t cheap and it didn’t work. Only later did a local priest advise him to go to a health clinic where he could get proper treatment with MDT, and for free.
At home, his father and siblings distanced themselves from him because they didn’t know how the disease was transmitted or how it was cured. His symptoms worsened and his fingers began to bend out of shape. He thought of running away and even giving up on life altogether. But when treatment with MDT began to take effect, he resumed his education. He was the only person in his family to graduate from high school and went on to study at university.
It was when he encountered PerMaTa that he found his motivation in life.
“Through PerMaTa, I want to make sure that people don’t have to go through the same things that I did. I’ve experienced discrimination and isolation. Now I am able to help other persons affected by leprosy and give them opportunities to lead a normal life.
“What we need is a change in society’s mindset. I have some small residual disability as a result of leprosy, but it’s not a problem. I could have had my fingers straightened, but I keep them this way as evidence that I once had leprosy. The problem is social stigma, and the fact that people think leprosy is a curse, or that it’s very contagious.
“As persons affected by leprosy, we know all about the disease and understand the feelings of leprosy patients. We hope the health authorities appreciate that and allow us to play a role. There are cases when patients stop taking their MDT for whatever reason, but by becoming involved we can help them resume their treatment.”
I was especially impressed as I listened to Paulus pitch the idea of forming a new branch of PerMaTa in Ambon to potential members.
“You won’t get a salary from this work. You won’t get rich. But what you will be doing is helping people.”
I heard Paulus say more than once that he does not want others to have to experience the hardships he endured. But at the same time, he also said he is grateful for the opportunities leprosy has given him.
As I watched him talk passionately about having a positive impact on the lives of others, I understood well what he meant.