Helping the village where one in four is disabled
- 20 January 2016
- From the section Magazine
In a remote mountain village in Indonesia, one in four people has physical and learning disabilities - an unusually high number. For many years they couldn't get the care they needed, but one man has transformed their lives.
At the entrance to the tiny, dusty village of Karangpatihan, a banner with a picture of Eko Mulyadi's face hangs between two trees. To his surprise, last year, he was elected the village leader.
"I never wanted to be the village head. It was never my ambition. But one night a young man came into my house very late. I had been asleep since 11pm. He woke me up and took me to a room where all the villagers were. There were about 90 people, both young and old, and they told me: 'We want you to be our leader.'"
Now Mulyadi's house is a place where anyone can come and pass the time, especially those with learning and physical disabilities.
The house has a wide veranda, where Mulyadi's wife Yuliana is sitting with their nine-year-old daughter and newborn baby, drinking tea.
They are taking a break from shelling a fresh crop of peanuts. Chickens wander around pecking at the husks, and the sound of the family's two goats bleating drifts through the house.
Sitting on the steps that lead from the veranda to the street is Duey, a spindly, middle-aged man who can't speak. He's a regular here and comes most days to sit with Mulyadi's wife and daughters.
Today, despite the oppressive heat, Duey is dressed in two shirts and three pairs of shorts, all of which are torn. He's pulling at his shorts and gesticulating, trying to tell me something using short guttural sounds.
Mulyadi comes down the steps to greet Duey and they begin an extraordinary conversation, resembling a dance. Mulyadi uses his face, his hands and his whole body to communicate with him.
"He's telling me he has plenty of clothes at home, but no trousers," says Mulyadi, smiling.
Find out more
- Eko Mulyadi spoke to Outlook on the BBC World Service
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Down the street, Bagus Waras is picking up rubbish. He was born with hydrocephalus, a condition where a build-up of too much cerebrospinal fluid causes the brain to swell. He's 30 but has the developmental age of a young child.
When I ask him what he is doing he says timidly: "Please Miss, I am just five, just five. I am going now, going to school."
Duey and Bagus are two of the 30 people here who were born with disabilities of one kind or another - a quarter of the total population of 120.
According to the World Health Organization, birth defects usually occur in about 6% of all births, putting Karangpatihan at four times the global average.
And it's not just Karangpatihan. In other hamlets in the district of Ponorogo, such as Sidowayah and Pandak, it's a similar story. The problem first became apparent about 60 years ago.
"The majority of people born with learning and physical disabilities were born in the 1950s," says Mulyadi. "There were no doctors here at the time and the village was desperately poor. It wasn't until the children reached around four or five that the villagers began to understand that their children weren't like other children.
"They wondered why they couldn't speak, why they weren't growing like the other children. There was no help for them then, there were no schools for children with special needs, there were also no health clinics or doctors to go to, so these children became outcasts."
Although Mulyadi grew up with neighbours on both sides who had children with disabilities, it wasn't until his father, a farmer, volunteered to look after a severely disabled child that he really understood what life was like for them.
"I was just four when he came to live with us, but I instinctively felt very sad for him. I was one of the few children in my part of the village to go to school and this boy used to accompany me. He couldn't talk but I got to know and understand him really well. He became my friend. It was then that I noticed all the other people in the village like him," Mulyadi tells me.
"They were ignored by their families because they simply didn't know what to do with them. They fed them, but otherwise they ignored them and left them to fend for themselves."
As Mulyadi grew up he became more and more concerned.
"Other people looked down on the disabled people, they just thought they were very stupid. They even called them crazy," he says.
"I was always worried for these people. They were so poor, and I don't think they were happy. They can't tell you how they feel but I had a feeling they were really suffering a lot. Their lives were so difficult. I was concerned about what would happen when their parents died - who would take care of them? Who would they live with?"
Mulyadi was the only teenager in his village to complete school and go on to higher education. When he returned he felt it was his responsibility to do something.
At first he donated food and money from his own earnings, but he soon realised this wasn't going to change people's lives in any significant way, so he began to apply for government grants. But he got nowhere. "It seemed my cause was invisible," he says.
Then he turned to a local journalist and asked him to visit the village and write an article.
When the story hit the press, Karangpatihan was dubbed "The Village of Idiots". Mulyadi felt crushed. Ridicule was the last thing he wanted. "But an unexpected thing happened," he says. "It got people talking and wondering why there was such a high concentration of people born with birth defects in the villages around Ponorogo."
There were many theories. Some thought the isolation of these mountain villages had led to decades of inbreeding. Others blamed it on a plague of rats that ravaged Karangpatihan and Pandak for four years between 1963 and 1967, destroying crops.
The most likely causes, says Mulyadi, are poverty and malnutrition. "There's been no official research, but it is my strong belief and also the belief of the people here, that the disabilities were caused by poor diet during pregnancy."
Food scarcity here is a big problem. The dry limestone slopes of this mountainous region make it difficult for villagers to grow crops, and its remoteness means there are few opportunities to earn enough money to buy food. Nearly 70% of households in the district live below the poverty line.
Most rely on a diet of rice and cassava, known locally as nasi tiwul. But certain substances in cassava can inhibit the uptake of iodine, which in turn can lead to birth defects.
- Iodine deficiency is the most common cause of preventable brain damage
- The WHO estimates that more than 30% of the world's population have insufficient iodine intake
- Since the 1990s there have been efforts to introduce iodised salt in iodine-deficient countries
- UNICEF estimates that 50 million people worldwide live with intellectual, motor and hearing disabilities due to iodine deficiency
After the newspaper article put Karangpatihan on the map, things began to change. The government funded a building programme in the village.
Mulyadi saw this as his chance to make a change. "I wanted to do something for these people. I needed to show that I cared about them, to set an example. I wanted to prove that these people are capable, they can be useful and creative. I wanted them to be treated as equals. I thought they deserved this and I wanted to change the way people thought about them."
So he got them building. "I asked all those who were physically strong to come forward to work as labourers."
The other villagers were sceptical.
"When I first started this programme some people thought I was mad, they were really against it. People said it was impossible," says Mulyadi.
And it wasn't easy.
"I taught them to do simple jobs on the building sites - mostly with a lot of sign language. Trying to train people with learning disabilities is actually really difficult. It takes a lot of patience. It takes time. The biggest challenge is to find a way of communicating with them. Mostly it's through facial expression and sign language and the way you use your body."
But the result was astonishing and changed attitudes in the village, says Mulyadi.
"They ended up helping to build a whole new infrastructure - roads, bridges and houses. We even built a school."
After the building programme, Mulyadi started other projects because, by this time, he had the attention he needed to raise funds. In 2010, with money from the Corporate Social Responsibility Bank Indonesia, he built fish ponds for each of the families with disabled children so they could earn a living. Now there are 57 fish farms in Karangpatihan.
One of those families used to live next to Mulyadi. As we wander up the village's single dusty road to meet them, the musical sounds of a wedding ceremony come drifting down the street.
Several disabled people have married each other and some have children. Nuomo is nine. He is not disabled but both his parents have learning disabilities. Neither can speak. Nuomo learned to speak by talking to his grandmother.
"Mostly I talk in sign language to my mother but it can be difficult. I don't always understand her," he says, before running to join his friends who are playing by the river.
We reach Mulyadi's old house. Next door, two men in their 40s, Dipon and Jamun, are smoking hand-rolled cigarettes. They are brothers, both unable to speak. Leaning against a sandy green wall, they smile and nod to acknowledge our arrival. Out of the tiny doorway comes their mother Sipon, who is in her 70s.
Sipon's husband died a few years ago, and faced with having to provide for her grown-up sons on her own, she turned to Mulyadi. He made a pond and taught Jamun to farm fish, and he gave Dipon two goats and 10 chickens.
In addition, every Sunday Dipon and Jamun join others at the community hall to weave doormats in another scheme Mulyadi has set up to help the village's disabled residents earn money.
But Mulyadi hasn't been able to help everyone. In the far reaches of the village, cut off by a river, lives 39-year-old Campret. We scramble up the bank and follow a path into dense vegetation. When we reach a clearing we can hear loud moaning.
What confronts us next is a shocking and upsetting sight. Campret is lying on the bare concrete floor. He's extremely thin and dirty, and covered in scabs which look inflamed and sore. His father, who is sitting beside him, is blind.
When he sees us, Campret cries out, making shrill sounds. He's clearly very disturbed. His elderly mother sits down beside him trying to calm him.
I ask her why he is lying in the dirt. She assures me she bathes him every day and that he has a bed, which he won't use.
"He gets very angry if I don't bathe him, and I have prepared a bed but he prefers to sit on the sand," she says.
Looking at his sores, I ask her when he last went to the doctor. "I took him to a doctor when he was a child," she tells me. "Also, when he was a teenager, to a village doctor. He was angry every time I took him to doctors. He was furious. He tried to run away so I haven't taken him since then."
Campret sometimes runs away, says Mulyadi. "He's been known to wander to other villages and stay away for days at a time. Sometimes it gets so bad his parents have to tie him up." He shows me the thin ropes they use.
I ask Campret's mother when she last had to use these. "I haven't used them for almost a year now," she says. "In the past he used to run away to another village, and I am not strong enough to stop him. But now he mostly stays at home so I don't need to use them."
Campret hasn't seen a doctor for 20 years but it's very clear to me that he needs urgent medical attention. I turn to Mulyadi, "Why hasn't anyone helped this family?" I ask.
"Actually we haven't seen the need to take him to a doctor because physically he's OK," says Mulyadi. I disagree and tell him Campret clearly needs to see a doctor.
"We actually don't know what to do," Mulyadi admits.
"We don't have a doctor who is a specialist and can help Campret.
"The only thing I can do is give them food and money. I can't involve him in any of my workshops because he doesn't understand. It's a really tragic case," he says, quite helplessly.
I press Mulyadi to try to find the right doctor to come to see him.
Cases like Campret's have sharpened Mulyadi's resolve to prevent more children being born with disabilities. That's why he's taken it on himself to monitor every pregnancy in the village, especially those of women who are disabled, encouraging them to eat a healthy diet with plenty of green vegetables.
And for those who can't get to the local hospital, which is 45 minutes away, or who can't afford a scan, he will offer to take them in his car and pay.
Within the village, there is also now a health centre with a midwife and a doctor. The result is encouraging, says Mulyadi. "In the last few years there haven't been any babies born with birth defects."
He hopes that one day, the villagers with disabilities will manage to survive on their own. Making his way home to his own baby, and to help his family hull the last of the peanuts, he remembers how things used to be. "In the past, you'd often find disabled people sitting on the roadside doing nothing. That's a rare sight now. Our village is a very different place."
A place, he says, that his daughters can be proud of.
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