Growing up, Natalie Devora always questioned how she fit into her African-American family.
“Everyone was brown, and then there was me,” Devora says. “I’m a white-skinned black woman. That’s how I navigate through the world. That’s how I identify.”
Devora has albinism, a rare genetic expression that leads to little or no melanin production. No matter what race or ethnicity someone with albinism is, their skin and hair appear white in color due to a lack of pigment. It is estimated that one out of every 18,000 to 20,000 people born in America each year have some form of albinism, according to the National Organization for Albinism and Hypopigmentation.
Devora grew up in Oakland, Calif., where, every so often, strangers would ask her mother about her “white” child. It made Devora question where she belonged.
“If we were out doing something as simple as buying shoes, it would be, ‘Whose child is that?’ ‘Are you baby-sitting that child?’ ” Devora recalls. “My older brother would joke, ‘Someone left you on the doorstep and rang the doorbell and left.’ ”
As an adult, Devora felt ostracized when she attended a meeting for female writers of color at a bookstore in Oakland. One of the other writers wrote and read aloud a piece about how the meeting was a “black only space.” Devora felt it was directed at her and almost left. Instead, she wrote a piece of her own in response. “It touched on how my life had been a war of colors,” Devora says, and on how she struggles with being “both a black woman and a black woman without pigment.”
That deep, internal struggle felt by many with albinism often goes unnoticed by others. Because they often don’t look like the people within their racial group, the question is: Where do they fit?
“Unfortunately, society has some problems with difference,” says Mike McGowan, the president of the National Organization for Albinism and Hypopigmentation, or NOAH. “It can manifest itself to a child in terms of teasing and being shunned. It can manifest itself within the family, where family members or parents may feel that they have been cursed or have difficulty dealing with a child who is different or looks different.”
It helps when people with albinism have a chance to get together and talk, says McGowan. That’s what NOAH does. It was founded in 1982 in Philadelphia, and its roughly 1,000 members meet at local chapters in places as diverse as San Francisco Bay Area, Northern Illinois and South Texas. NOAH holds annual conferences, picnics and fundraising bowl-a-thons nationwide for adults and children with albinism.
“There’s almost a familiar connection that happens even though we’re not related by blood,” McGowan says. “The condition gives us a common experience worth sharing.”
There is little written about dealing with albinism or its psychological effects. In popular culture, albinism is often depicted negatively in a slew of books, movies and television shows, from the assassins in The DaVinci Code and The Matrix Reloaded to the evil “Albino” character in The Princess Bride hellbent on torture. The word “albino” is also deemed as derogatory by many in the albinism community, though it is often used in popular culture. Many members of the community prefer to be referred to as people with albinism.
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, the 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 passed away. “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 interns with the NPR’s national desk. She’s an alumni 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 start up, Beacon Reader. Find her on Twitter at anjuliks.