Rosanah, 17 years old.
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Travel

Portraits of People Living with Albinism in a Remote Village in Indonesia

In the village of Ciburuy, West Java, the rate of albinism is unusually high. Here, one in 177 people have the rare genetic condition.
November 22, 2018, 8:00am

In an isolated village of Ciburuy, West Java, nine people stood out. They have nothing in common except for one thing — they have albinism. Though albinism has existed in Ciburuy for generations, the nine people experience discrimination daily from other residents.

Albinism is a rare genetic condition everywhere. Worldwide, it affects between one in 17,000 and one in 20,000 people, though the condition is more common in South Africa, where one in 4,000 people have albinism and in Nigeria, where the number is closer to one in 5,000 people. In Ciburuy, however, the genetic trait is even more common. The population of the village is approximately 1,600, meaning the albinism rate is one in 177 people. It's an anomaly that no one has the explanation for so far.

One resident, who has albinism, said his family has been living in the village for 149 generations. "My family is known for having the 'white' gene,” says Suryana, keeper of Ciburuy’s traditional house," he told ABC.

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His 14-year-old daughter, who doesn't have albinism, told me, "I'm proud of my father because he's unique."

Ciburuy is only an hour drive away to the nearest big city, Garut, but albinism does not usually spread outside of the village.

Though the rate of people who have albinism is much higher in Ciburuy than anywhere else in Indonesia — or the world, for all we know — they still experience discrimination. Rosanah, who's 17 years old, told ABC she decided to drop out of school after being bullied by her classmates. "“They always tease me at school," she said. "I get really frustrated."

She also said she doesn't know if she'll ever marry, because she doesn't want her children to go through the discrimination she faces as well.

Dewi Resmana, a 13-year-old girl and her younger brother Jajang Gunawan, 3, also have albinism and are constantly teased by their peers. Their mother, Siti Rohmah, told me that Dewi wanted to drop put of school at one point, but Rohmah wouldn't let her.

"Once I stopped her classmates and scolded them," she said, raising her voice. "We're all God's creatures, we can't mock one another. Now they don't tease her anymore, maybe because they've gotten to know her better."

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