When Michael Jackson revealed in a televised interview with Oprah that he had been diagnosed with vitiligo, a skin condition that results in loss of pigmentation, public response ranged from suspicious to accusatory. Some doubted Jackson had vitiligo at all. Others accused him of actively bleaching his skin because he “wanted to be white.” Regardless of where people stood on the news, it was clear that they connected the condition to Jackson’s own attitude about his skin color.

To date, Jackson’s is still the most high-profile case of the condition, but vitiligo affects up to 2 percent of the world’s population, which means 1 in 200 is affected. Most instances occur in the United States, where three million are affected in people between the ages of 10 and 30.
While vitiligo poses no physical health threat to those who have it, the psychological and emotional effects are another story. As in Jackson’s case, observers may assign blame to sufferers, question their racial loyalty or self-identity, and, worse, treat them as though the condition is a scourge or contagious illness. Consider this 2001  New York Times piece that describes one black woman’s experience, as well as global experiences with vitiligo:

As her skin gradually lost its color, patch by patch, people treated her like a leper. Thinking she had a contagious disease, they often refused to shake her hand or take money directly from her.

In India, vitiligo (pronounced vit-uh-LIE- go) is often referred to as “white leprosy,” and women with it are often discriminated against in marriage; if they develop vitiligo after marriage, it can be grounds for divorce. Nehru ranked vitiligo as the third-biggest health problem in India, after malaria and starvation.

If confusion and cultural insensitivity around vitiligo sound like an outdated thing, they’re not. “(1)ne Drop” is a new portrait documentary project that seeks to collect images and stories from people who self-identify as black, even when their skin doesn’t immediately corroborate that identification. Sembene, whose vitiligo has given her face, neck, and other areas of her body two hues, is a model whose image is included on the site. She discusses various exchanges with strangers regarding her race:

“A lot of people just look and see skin color. I’ve actually had people ask me was I black or was I white first.  A white gentleman came up to me and said, ‘I thought you might be white, but then I saw your lips.’ One girl said to me, ‘I’ve been wanting to ask you this question, but I didn’t feel comfortable asking you because I thought that you might be offended, but are you black or are you white?’ And I was just, like, ‘Well, I’m always black.’ When we were done with the meat of the conversation, she laughed and said something about my hair and my butt gave it away. People definitely let you know that they view being black as being very literal – the amount of pigment you have. ‘Your skin is white, therefore you’re white. Or are you?’

It’s always strange when people believe they can ask strangers what they are. It’s even stranger when that question occurs because of skin discoloration — or when the inquirer expects that the person will change her racial identification because of that discoloration. Clutch has covered this persistent impression that a person is “white and black” at the same time or, somehow, becomes dissociated with conventional blackness when he or she has a condition that affects pigmentation. In “Embracing the Exotic,” Brandi M. Green discusses life with albinism. In “Turning White: A Memoir of Change,” Clutch discusses TV broadcaster Lee Thomas’s book about his personal experience with vitiligo.

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