Mylio is a technology company, and there’s a lot of talk in tech about unicorns, that rarest of beings with the magical ability to change everything. Unicorns came to mind recently after interviewing photographer Russ Quackenbush: among his personal projects is a series of striking portraits of people with Type 1 Albinism, a rare (and in some places, magical) genetic condition. We’ve since found three other photographers who’ve been inspired to create similar personal projects, celebrating and exploring the beauty and grace within the otherness.
According to the National Organization for Albinism and Hypopigmentation (NOAH), about one in 18,00 people in the U.S. (other sources say one in 20,000) have some kind of albinism, marked by reduction in melanin production in hair, skin, and eyes. Severe visual impairment is common. Albinism is ethnically (and ironically) color-blind, and both parents have to carry the gene to pass it on to their children, even if they themselves don’t have the condition.
A common theme reported by the subjects here: the burden of always being the center of attention. “The sun makes my skin glow,” one recounts. “I stick out like a sore thumb. You can compare it to how vampires in Twilight glow in sunlight.” The supernatural quality isn’t without its dangers — in some parts of Africa, being born with albinism is thought to be either very good, or very bad luck. Either way, witch doctors have hunted affected persons for their supposedly magical limbs or organs.
The flip side of standing out from the crowd: fashion! Designers love you. Two of these photographers came to their subject via models with albinism, challenging standards of beauty.
The images above are from Angelina d’Auguste’s senior thesis project at the Fashion Institute of Technology, inspired in part by images she’d seen of Shaun Ross, the first international male fashion model with albinism. d’Auguste works with themes involving appearances and social issues.
“Most people have never interacted with anyone with albinism. 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.”
From Russ Quackenbush: “I grew up with learning disabilities (I’m dyslexic) though I was good at math and creative things. So for me, photography is a great tool to approach things that I wouldn’t otherwise understand. Where I grew up there was a gentleman who was an Albino – Type 1 Albinism is how it would be described now – and as a kid, I didn’t know that’s why he was different. So as an adult I wanted to photograph these people. I wanted to make huge, 40” x 60” prints so that people would be overwhelmed by the power of the images.”
I put the subjects in white so that the beauty of the person came through; if you put a colored shirt on them, then the focus of the picture, that contrast — all you’d concentrate on was that they’re albino.
“At first when I reached out, people were skeptical – and rightly so: in the media, they’ve been portrayed in certain ways. Like the movie Powder. Logistically, it was hard. This one girl came in, and her parents had to drive her because of her eyes; that’s a common trait for certain types of Albinism, that you can only see so far. Then the guy with the big beard came in, and it turned out he had these friends — three siblings – all with Type 1 Albinism, who were interested in the project. Now, the odds that you’ll be born with these traits are 1 in 17,000, and here was this family with three kids – and the parents are both fully pigmented. You’d have a better chance of winning the lottery than that happening!”
South African photographer Justin Dingwall was introduced to his first subject when asked to help build a portfolio for Thando Hopa, a South African attorney and aspiring part-time model. Struck by the experience, he asked Hopa if she’d sit for a personal project, the ALBUS series, later including Africa’s first male model with albinism, Sanele Junior Xaba.
“As soon as I met her, I knew I wanted to create something with her. It was her inner strength, the poise that radiated from her. Her drive and tenacity are very inspiring. It made me want to get to know her better and try to understand more about albinism.”
Brazilian photographer Gustavo Lacerda spent 5 years working on his project, much of it spent researching, locating, and trying to convince subjects to come to his studio and be photographed.
“The photophobia caused by the absence of melanin lead them to live literally in the shadow. And as photography is basically light, I thought it would be instigating and revealing to bring them to the position of ‘protagonists’.”