‘Clear as black:’ Seeing beyond shades of albinism within Puerto Rico’s population

On the sun-filled island of Puerto Rico, a little girl playfully bounds along the boardwalk, her stark blonde hair streaming around her pale pink shoulders. Her eyes, ever sensitive to light whether from the sun or indoors, are always covered by a pair of white sunglasses.

Puerto Rico has the highest prevalence of albinism and HPS (Hermansy-Pudlak Syndrome) in the world. HPS, a rare disease that occurs most commonly in people who have albinism, occurs in a variety of ways: HPS I and HPS 3 are the two most commonly diagnosed within the Puerto Rican population, with manifestations that can include platelet dysfunction, colitis, and/or fibrotic lung disease. But people diagnosed with HP3 do not always lack pigmentation in their skin, hair or irises.

Photographer Adriana Monsalve tries to dispel the misconceptions about persons with albinism in her beautiful series, “Clear As Black.” As a woman who has fair skin but who is Hispanic and black, Monsalve was initially hesitate to approach the series, which forced her to confront her own story of being classified based on looks. “By looking at me you will not know what I am. I am white, but I am black. Slowly the personal side of this story kept gnawing at me more and more, and before I knew it this project was totally about me. Through this series, I discovered who I am genetically,” she says.

“I came up with ‘Clear As Black’ because I felt it represented exactly what it was that I had been seeing for three months in Puerto Rico: white people that are black, and black people that are white and all the visual representations of that. In the same way, ‘Clear As Black,’ is telling about me.”

Monsalve wanted to break away from the narrative of seeing persons with albinism as “other.” “I wanted to highlighted the fact that they are people before they are ‘albinos.’ They are people with a condition called albinism and they live interesting lives just like you and me, full of layers and puberty, and racism and prejudice and romance and academic achievements and religious views and break-ups and lust an family drama and everything that makes them a whole person.”

Monsavle executed the series in black and white intentionally, out of her predilection for mixing color photos with black and white and to further emphasize the overall theme of color. “I’ve always found the rule in photography about how you should not mix color photos with black and whites in a series to be silly. My story has so much to do with skin color and lack [thereof], so I am going at against that rule for my benefit and the benefit of the story. ”

Despite a prevalence of persons with albinism in Puerto Rico diagnosed with HP3, the task of finding and photographing them is made all the more complex not only because they often lack distinguishing traits of albinism (light hair, eyes, skin), but because they are not registered in medical offices as people with albinism and often suffer untreated medical problems. Even a person with HP1 will often have red or dark hair.

“That’s what this series is about: changing what the word ‘albino’ means, and ultimately taking it out of our lexicon. I am showing a broader more expansive narrative of what people with albinism look like.”