National Geographic : 2017 Jun
90 national geographic • JUne 2017 yet another treatment. His cancer, three years old, consumed part of his left ear and turned the base of his neck a mottled red. “Now,” he says, “I am trying to do fishing at night.” Neither man, each in his mid-40s, is likely to survive long, Luande says. They probably sought spurious help from waganga first, and medical help too late. The children sponsored by Under the Same Sun know and demonstrate the sunscreen drill, smoothing it on the backs of their ears and in between their fingers. But the sun remains their daily curse. Without sunglasses, bright light stings their eyes, so they must close them for relief. Ash’s group hands out sunglasses at every stop, and other groups test eyesight and distrib- ute free spectacles, as they’re called here, to help schoolchildren read blackboards. In most of the world, people with albinism face childhood taunts and schoolroom frustrations, but they regularly find work and love and raise a family. Recently, in some careers, white skin and hair have even become an unexpected asset. Consider musician Aaron Nordstrom, 35, vocal- ist for the alternative metal band Gemini Syn- drome in Los Angeles. “ When I was in eighth grade, when I used to dye my hair strawberry blond, I looked like a pale Irish person. I even painted my eyebrows with a pencil,” Nordstrom tells me, chuckling, but wip- ing away tears. “I spent most of my life trying to blend in. I was angry and depressed, on medica- tions from the time I was 12 or 13.” Eight weeks into high school, he tried to kill himself. Playing piano and guitar with rock bands that were “angry without apology” gave him an out- let. He began to write his own music, including a song called “Basement” with the opening words: “Color-coded blasphemy, this really strange anatomy—is this really my life?” Applause gave him confidence. Now his hair is in dreadlocks and his beard is hefty. “ When we play on stage, everybody wears black except me. I wear white.” He needs no makeup to dis- tinguish himself: “It’s God-given.” Kenya hosted the world’s first beauty pageant for people with albinism just last year, to help lift the stigma, while models with albinism are mak- ing a name for themselves on fashion runways around the world. Diandra Forrest, an African American from the Bronx, New York, was the first to be signed to a major agency. Confidence, she says, “was a work in progress, after so many years of being teased and misunderstood.” At 28, she says she wouldn’t trade her ethereal beauty: “I don’t mind anymore being the albino model, be- cause at least now people know what albinism is.” A few people with albinism also are making it to the top in Tanzania, including a couple of members of parliament and Abdallah Possi, who, in 2015, at age 36, was named a deputy minister— the first with albinism. Now an ambassador, he was also the country’s first lawyer with albinism. i Meet the fUtUre of albinism in Tanzania when Acquilina Sami, 28, welcomes me to her apartment just outside Dar es Salaam, two cinder Enjoying a lively game of cricket outside his grandparents’ house in Delhi, Dharamraj, six, along with his watchful aunt Pooja and uncle Ram Kishan, looks forward to days of greater acceptance and oppor- tunity for people with albinism. Misunder- standing of the genetic condition has led to discrimination, ostracism, and even violence. HOW TO HELP To learn what you can do to help people with albinism, visit Under the Same Sun (underthesamesun.com) and the Global Medical Relief Fund (gmrfchildren.org).