People Of Color With Albinism Ask: Where Do I Belong?
So what’s behind the villainous references and negative treatment of people with albinism? A lack of understanding of the disorder, says Dr. Murray Brilliant, director of the center for human genetics at the Marshfield Clinic in Wisconsin. At the center, Brilliant conducts research on genes that influence human health disorders.
“Human beings define race as an important factor in identity,” Brilliant says. “It’s very important for people to have a group identity and albinism can complicate things.”
People with albinism have at times been revered around the world, but sometimes with some disastrous consequences. In 2012, NPR reported on East Africans with albinism in Tanzania being hunted for their body parts because they were considered auspicious. An organization called Under the Same Sun strives to protect Tanzanians with albinism. According to the 2011 Aljazeera documentary Spell of the Albino, these killings have gone down in part thanks to the media attention.
That brings us back to the original question. In a society where race is intrinsic to the fabric of our society — leaving aside the myths of post-racialism and colorblind politics — where do people of color, but without color, fit? Do they need to fit? And how should everyone else change their own perceptions about albinism?
Natalie Devora’s daughter, Jewel, is also African-American, and has a dark skin tone. Jewel, 20, who is adopted, says she was upset when she learned about how her mom has struggled with her identity over the years. “Color does matter, unfortunately,” says Jewel. “People with albinism are in the middle of it because everyone around them is asking them what color they are and where they fit in.”
At the same time, Devora points out, African-American people with albinism have some privileges that others, like her daughter, do not. Having white skin can affect how they’re treated anywhere from job interviews to police encounters to their own homes. “Even though someone may know that I am black as they are, there is still an assumption that I’m white,” she says. “Or that my blackness is not the same as theirs based on my skin color. Which means I would have access to greater privilege. Which honestly, in some cases, is true.”
The Devoras point to the experience of shopping for clothes together. Natalie says she often notices salespeople keeping an eye on Jewel, but not on herself or other white-skinned people in the store. “My responsibility as her parent and just as a person in the world is to call attention to that, like, ‘So, why are you following my daughter around?’ ”
Brandi Green, 33, is another African-American woman with albinism. She lives in Chicago and is an associate with Teach for America. She didn’t find NOAH until she was a young adult and says it would have helped to know about it as a kid since neither she nor her parents, who were also African-American, understood her condition.
“People at school would just be like, ‘You’re an albino.’ And I’d be like ‘I’m fair,’ because I didn’t know at the time,” Green says. “My parents hadn’t told me, so I didn’t take it as truth.” She recalls her parents’ explanations for her color: ‘Oh, we had white people in our family a long time ago,’ or, ‘You just take after some lighter people in our family.’ ”
As a result, Green says she would overcompensate to try and prove she was African-American, which didn’t feel right, either.
Her mother also struggled with questions from strangers about her daughter’s looks. “I think she didn’t really want to acknowledge any kind of difference,” Green says. “She’d tell me, ‘You’re just like everybody else.'” But over time, she felt more and more that albinism was a huge part of her identity.
Green was a student at Grinnell College in Iowa when she first learned about NOAH. An older African-American woman on the staff of her college — who also had albinism — invited Green to a local event hosted by the organization. For the first time, Green was able to talk about how she had been treated in the past. She remembers trading stories with people she met that day. “‘Oh wait, you were teased, too? Oh wait, I was teased!'” Green recalls, laughing. “‘They called you Casper?’ You know, just kind of talking about that.”
After seeing NOAH’s positive impact on Green, her dad supported his daughter’s involvement with the organization. That support has also helped Green embrace her identity, long after her parents died. “I grew up feeling really alone based on my difference and experiences,” Green says. Now, she says, she’s comfortable in her own skin, and helping others with this condition. “I’m very open about discussing it, very open about educating others.”
Anjuli Sastry is a former intern with NPR’s national desk. She’s an alumna of the Columbia Journalism school and the University of California, Berkeley. She’s a San Francisco Bay Area native and has previously worked with ABC News and the digital journalism startup, Beacon Reader. Find her on Twitter at anjuliks.