Being judged for how you look is all too common. But what if being judged resulted in serious discrimination that kept you out of school or made you unable to get a job? What if it put your life in danger?
Even as small children, many people with albinism live with social exclusion and the constant threat of violence. They live that way because of a stigma that is caused by demonstrably false information.
Journalist Vicky Ntetema risked her life to expose those lies because “when it comes to human rights, there is no compromise.”
In Tanzania, where Ntetema lives and works, and in other African countries, local witch doctors spread myths that people with albinism are cursed, that their condition is contagious, and that even so, their harvested body parts bring good luck. The witch doctors profit handsomely from a grisly and inhumane trade, as Ntetema discovered by posing undercover as a potential buyer.
As many as 1 in 1,400 Tanzanians have albinism. Yet many of their neighbors don’t understand that the condition is genetic and results from having little or no skin pigment.
“You may not have a relative or a friend or a neighbor who has albinism, but you don’t know if you are carrying the gene,” Ntetema said. In Tanzania, she said, 1 in 19 have the gene. In addition to facing a life of discrimination, children with albinism suffer from nearsightedness and a higher-than-normal risk of cancer from sun exposure.
On March 29, U.S. Secretary of State John Kerry recognized Ntetema for taking risks to expose the murders of people with albinism. Kerry gave her the International Women of Courage Award and praised her reporting because it “saved lives and it sparked strong statements of condemnation [of those who harm people with albinism] by Tanzanian officials.”
Working through the nongovernmental organization Under the Same Sun, Ntetema is “bringing people with albinism out of the shadows and advocating for their fundamental rights,” Kerry said.