The Jakarta Globe
Dalih Sembiring
“I’m an albino and I’m proud of it,” Muhammad Iqbal Michael Syahputra wrote on the info box of his Facebook account.
He does not find the term derogatory as long as it is conveyed in a neutral tone.
“I have tried to find other Indonesian albinos on Facebook, but to no avail,” said 29-year-old Mike, who also goes by the Western name John Nikolas Michael Tambayong. “Maybe there is only me out there, or maybe they are using fake photos because they are ashamed of how they look. Or maybe they just can’t operate the computer because of the sensitive nature of an albino person’s eyes.”
One evening earlier this month, Mike sat with his sisters Angel Maharani and Angelique Kusuma Dewi, who are also affected by albinism, at a diner in Cilandak Town Square in South Jakarta to break their Ramadan fast.
Their mother, Murni Ediyati Katamso, daughter to one of Indonesia’s 1965 revolution heroes, Gen. Katamso Dharmokusumo, was also there. She is not an albino, but of her six children, three of them are. She gave each of them two names.
“I thought Western names would suit their white skin, but a spiritual person later advised me to give each of them a Muslim name,” Murni said.
The siblings’ looks — pale to reddish freckled skin, lemon- to soot-colored strands of silky hair and celadon eyes — have the tendency to make people steal second glances at them and wonder if they are Caucasian. They are, however, rare examples of oculocutaneous albinism, in which a lack of melanin pigment occurs in the skin, hair and eyes.
“It is indeed hard to get to know people with albinism here, even for us,” said 35-year-old Angel, Murni’s second child. “I once got off an angkot [public minivan] after a friend told me she had seen another albino. I approached him, but before I could even introduce myself, he ran away.”
Explaining that albinos often lack self-confidence, Mike said that whenever he came into contact with others with the same condition, they almost always keep their heads down.
“I didn’t want to be like that,” he said.
He isn’t, and credits his parents’ “coolness and support” for giving him the self-assurance to become the vocalist and guitarist of a punk-pop band called Prosthetic.
“I would like to become a member of the House of Representatives if I could, with an agenda to help people with eyesight problems and to eliminate the discrimination people like me face,” he said. “But for now, I want to make it as a musician. Some of my songs are about discrimination.”
Murni, a 53-year-old former fashion model, said that unfortunately, it was common for parents with albino children to hide them out of shame.
“But not me,” she said. “I took them out with me wherever I went. I didn’t want them to grow up embarrassed just because of their unusual features.”
Murni’s husband doesn’t have albinism either, but has a family history of the condition. Murni said she explained to anyone who made derogatory comments about her children being bule (foreign) that they were Indonesian and that their looks are a result of a variation in their genes.
She said she was also used to confronting those who made accusations that the three siblings were inflicted with an infectious disease resulting from incestuous parents.
Angel, who is married to a dark-skinned man from West Sumatra, said she has a son who is not albino. “However, my husband and I had to fight for our marriage to happen,” she said.
Angel, Angelique and Mike have run their own businesses for almost five years.
“I run a cellphone shop, Angel sells phone credit and Mike runs a service center for cellphones and helps with the provision of products,” said Angelique, whose yellow hair has been dyed brown.
“Unless albino people have a good connection at some company, it is almost impossible to get a full-time job with a decent position. So we figured we should just become entrepreneurs, for our own sakes,” she said.
The siblings applied for full-time positions at several companies, but all were turned down. Mike has better sight than his sisters, which they credit to his regular intake of carrot juice, but he could not persuade anyone to employ him despite his excellent English, computer skills and wide general knowledge.
Angel is not disappointed, even though she worked hard to attain a law degree from Pancasila University in South Jakarta. “I basically learned by using my hearing,” she said. “I couldn’t count on my sight.”
At her last eye exam, she scored minus 10 on the myopia scale, which is a measure vision. “Some of my friends were kind enough to let me borrow their notes and a professor suggested that I use a voice recorder. But reading text books for my final thesis, as well as typing it up, was extremely tricky.”
“That’s the same reason Angel and I don’t have Facebook,” Angelique added, with a laugh. “But maybe we should, so that other albinos will open up.”
By dealing with her impediment, Angel has proven that she was no different from non-albino children with normal sight academically. Sometimes, she was even better.
“Angelique, Mike and I always got high grades in class and I graduated university with a cumulative GPA of above average,” Angel said. “I also think that I’m the only Indonesian albino to have ever read a poem in front of a president. It was 1984, at the commemoration of National Heroes Day, and the president was still Suharto.”
Mike added, “And that’s why other Indonesian albinos shouldn’t be ashamed of who they are and also why people with normal looks shouldn’t underestimate people with albinism.”
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