This Photo Series Shows Albinism In A Whole New Light
(Photos: Angelina D’Auguste)
“When I first knew I wanted to make albinism [the focus] for my thesis project, I knew that one of the hardest parts would actually be finding my subjects,” says d’Auguste. “But once I photographed one subject, that led to another, because they would recommend me to other friends or families [with] albinism, which is very common. For instance, four of the people I photographed are all related, each parent having albinism and carrying the gene down to their two children.”
![“Many of my subjects explained to me their medical conditions, and how [albinism] affects their daily lives,” she says. “For example, transportation can be a huge issue at times; some can’t drive because of their eyesight, and others rely on public transportation and have trouble even seeing stairs.”](https://s.yimg.com/ny/api/res/1.2/ys9MO3sFdmqqxyUfcWgFSw--/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MA--/https://s.yimg.com/uu/api/res/1.2/dfAQop6mk.2JffLiBLOzOw--~B/aD0zNjA7dz01NDA7YXBwaWQ9eXRhY2h5b24-/https://40.media.tumblr.com/89a743d0278a7a9b18a1df13c815f14d/tumblr_inline_nwhdunPRre1t1n6uk_540.jpg)
“Many of my subjects explained to me their medical conditions, and how [albinism] affects their daily lives,” she says. “For example, transportation can be a huge issue at times; some can’t drive because of their eyesight, and others rely on public transportation and have trouble even seeing stairs.”
![D’Auguste wanted her subjects to be different ages and ethnicities to show the diversity of albinism. “All of the people I met definitely embraced having albinism. One says he forgets that he [has the condition]. He considers himself just a regular guy who just happens to be a little more fair-skinned.”](https://s.yimg.com/ny/api/res/1.2/JK69aYWTmqkhXwgANXXcPA--/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTY0MA--/https://s.yimg.com/uu/api/res/1.2/EitIEWkKHpMfcMtW772B5w--~B/aD0zNjA7dz01NDA7YXBwaWQ9eXRhY2h5b24-/https://41.media.tumblr.com/9451aca21dae2f8459905e86f9cb006a/tumblr_inline_nwhdunuL271t1n6uk_540.jpg)
D’Auguste wanted her subjects to be different ages and ethnicities to show the diversity of albinism. “All of the people I met definitely embraced having albinism. One says he forgets that he [has the condition]. He considers himself just a regular guy who just happens to be a little more fair-skinned.”
D’Auguste’s subjects talked about having experienced regular teasing when they were in grammar school, but said that it subsided as they got older. One told her, “Being different in society becomes a cool thing when you grow up.” Another said, “Having albinism…broke me out of my shell, because I am very shy. It is a big part of who I am, and I wouldn’t trade that for the world.”
Still, some of them expressed to her the difficulty of dealing with frequent unwanted attention. “One told me, ‘Albinism has really affected my personality. I can’t be who I am, truly, because of how others look at me and how they treat me. I always stick out in a crowd, I’m always noticed, and most of the time the center of attention, and I don’t really want to be.’”
Many of the women d’Auguste photographed normally wear makeup, and didn’t feel comfortable going without it for the shoot. Others expressed ambivalence about makeup, especially as they became more at home in their own skin. “One of my subjects said, ‘I can wear makeup or not, and it doesn’t bother me if I don’t. Now, I’ve learned to be comfortable all-natural.’” Some also said they expressed themselves by having fun with their hair, telling d’Auguste, “It’s blonde, so you can dye it any color — including your eyebrows.”
Other beauty tips her subjects shared were about opting for lotions and soaps made for sensitive skin, and always using sunscreen. One described it to d’Auguste this way: “The sun makes my skin glow. I stick out like a sore thumb. You can compare it to how vampires inTwilight glow in sunlight.”
By Anne Marie Guarnieri
Photographer Angelina d’Auguste has always been drawn to “things that are out of the ordinary,” as she describes it. “I gravitate to [subjects] that involve appearances and social issues,” she says, which results in a point of view that sits somewhere between photography, documentary, and fine art. For her senior thesis project at the Fashion Institute of Technology in New York City, d’Auguste wanted to focus on a subject that would “captivate people by showing the unseen.” She had been intrigued by images of Shaun Ross, a model who has albinism, and from there, decided to take a deeper look into a condition not regularly seen or understood.
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According to NOAH, the National Organization for Albinism and Hypopigmentation, approximately one in 18,000 people in the United States has some type of albinism, which is a genetic condition marked by a reduction in melanin production in hair, skin, and eyes, and is present in every racial and ethnic group. Typically, a person with albinism will have vision problems and some variation in their hair or skin color, ranging from stark-white to brown.
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Although the people in d’Auguste’s series said they “embraced” having albinism, they also shared with her some of the challenges they’ve faced by being, as one of them put it, “always noticed.” “Most people have never interacted with anyone with albinism,” d’Auguste says. “Unfortunately, it is difficult for [people with albinism] to fit in society, so I wanted to show their distinct, beautiful features in a positive way.” In the above slideshow, she shares images from her project and gives us some insight into her subjects’ lives.