In the midst of debates about what racial box biracial individuals should check, another group of people with a dual identity has emerged with concerns about where they fit in: African-Americans with albinism. According to the National Organization for Albinism and Hypopigmentation, approximately one out of every 18,000 to 20,000 people born in America each year has some form of albinism, but as NPR pointed out in a recent report, little has been done to help members of this community develop a healthy racial identity.
Natalie Devora told NPR that growing up in Oakland, CA, people always questioned her mom about her “white” child which caused her to constantly question how she fit in with her black family.
“Everyone was brown, and then there was me. I’m a white-skinned black woman. That’s how I navigate through the world. That’s how I identify.
“If we were out doing something as simple as buying shoes, it would be, ‘Whose child is that?’ ‘Are you baby-sitting that child?’ My older brother would joke, ‘Someone left you on the doorstep and rang the doorbell and left.'”
The feeling of being an outsider didn’t stop in adulthood for Devora, who recalled a time someone at a meeting for writers of color read a piece out loud about how the group was a “black only space.” Conversely, in a color-struck society, being a white-skinned black woman has yielded preferential treatment in some instances, like when she’s shopping with her 20-year-old adopted daughter, Jewel, who’s dark-skinned and notices people’s eyes are on her child and not her..
“Even though someone may know that I am black as they are, there is still an assumption that I’m white 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.”
While most people of color with albinism don’t want to be seen as outsiders, for Brandi Green, 33, her parents’ refusal to acknowledge that she was different is what caused issues for her growing up.
“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. My parents hadn’t told me, so I didn’t take it as truth.” Rather than explain her albinism, her parents told her, ‘Oh, we had white people in our family a long time ago,’ or, ‘You just take after some lighter people in our family.’ “
This confusion pushed Green to overcompensate and try to prove her blackness even more, which she admitted didn’t feel right, either. It wasn’t until she met an older African-American woman with albinism on staff while a student at Grinnell college that she really learned about her identity and became comfortable with it.
“I think [my mom] didn’t really want to acknowledge any kind of difference,” Green said. “She’d tell me, ‘You’re just like everybody else.’
“I grew up feeling really alone based on my difference and experiences,” but now things are very different for the Teach for America associate. “I’m very open about discussing it, very open about educating others.”
As NPR points out, “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” all of which can be attributed to a lack of understanding of the disorder, said Dr. Murray Brilliant, director of the center for human genetics at the Marshfield Clinic in Wisconsin.
“Human beings define race as an important factor in identity. It’s very important for people to have a group identity and albinism can complicate things.”
Witnessing her mother’s struggle with her identity, Jewel knows that to be all too true. “Color does matter, unfortunately,” she said. “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.”
And for a lot of people of color with albinism that answer is I don’t know.