Photographer Finds Beauty in Rare Disease Patients

September 18, 2015

I’m in a hotel in Seattle watching photographer Rick Guidotti at work. Amid high fives and shouts of “awesome” a group of young people are laughing and posing as he clicks away, capturing the wide smiles and infectious enthusiasm in the room. This is not an average photo shoot, however, and Rick is not your average photographer. Each of the young people has Costello Syndrome, a rare genetic syndrome, characterised by very distinct physical features, varying degrees of learning disability and an increased risk of cancer.

A few years ago, Guidotti was a successful fashion photographer, flying between New York, Paris and Milan working on high-profile campaigns for YSL, Revlon, Elle, Vogue and Marie Claire, photographing some of the most beautiful women in the world.

A chance encounter at a New York bus stop altered the course of his life and found him questioning what we actually mean by beauty. He had spent the morning photographing Cindy Crawford, and leaving the shoot he saw a young woman at a bus stop. She had pale skin and bright white hair, the traditional hallmarks of the genetic condition albinism. In Guidotti’s eyes she was stunning, and he set about learning more about the condition.

What he found left him shocked. Medical textbooks on the condition showed clinical pictures of patients with albinism, often photographed in their underwear, a black bar covering their eyes. There was no beauty in the pictures; they were dehumanising images of sadness, sickness and disease. They bore no relation to the beautiful young girl he had just seen waiting for a bus.

He contacted the US Albinism Society and persuaded them that by working together, genetic support group and fashion photographer, they could challenge perceptions of the condition and show the true beauty of people with albinism, a world away from the negative images of medical textbooks and media portrayals.

He decided to run the shoot in the same way he would run any fashion shoot, and as he worked he saw a change take place in front of him. Young people affected by albinism were coming into the studio with their heads down: years of bullying, teasing and feeling different had made a huge impact on their self-esteem. By photographing them in same way he would photograph supermodels, he witnessed the young people beginning to to lift their heads and embrace their difference, seeing their beauty. The images he shot appeared on the cover of Lifemagazine and Guidotti’s project, Positive Exposure, was born.

Guidotti now travels the world, attending conferences organised by genetic support groups. He photographs children and young people affected visibly by genetic disease and has created a bank of images that show the humanity behind the diagnosis; celebrating difference, and challenging us to think differently about what we understand by human beauty.

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