Friday, September 11, 2015

Beauty is in the eye of the beholder

When Sarah Kanney was younger, she developed a way to avoid the fact that people stared at her. She averted her gaze, witnessing the world largely by looking down.

Sarah Kanney, born with Sturge-Weber syndrome, is a motorcross racer. Kanney is in the documentary "On Beauty" and part of photographer Rick Guidotti's Positive Exposure series, which aims to "celebrate the richness and beauty of human diversity." He approaches and captures his subjects like fashion models. Click through our gallery to see more of his images.

Kanney was born with Sturge-Weber syndrome, which is often characterized by a congenital port wine facial birthmark. With each passing year in school, the stares became harder to bear and Kanney switched to homeschooling starting in eighth grade.
But everything changed when Kanney turned 20. She met photographer Rick Guidotti when they both attended a Sturge-Weber conference. He saw beauty in her rather than a defining genetic difference and asked whether he could do a photo shoot with her. Kanney was shy and self-conscious at first, but agreed.
When Guidotti showed her the resulting photos, she was shocked. They showed her someone beaming with radiant confidence.
"It was amazing to see him bring the happiness out of me," Kanney said.
Kanney's story is just part of the documentary, "On Beauty," which follows Guidotti as he aims to transform the way people see and define what is beautiful. The documentary is screening now in New York City...
Guidotti's background was in the fashion industry, photographing models such as Cindy Crawford and working with clients such as Revlon and Yves St. Laurent. He loved the art of photography, but not the restrictive world of the fashion industry.
"I was always told what was beautiful, but I saw beauty in other places," Guidotti said. "One day, I left the studio and I saw this beautiful kid at the bus stop who had albinism. And I knew that she would be told she wasn't part of the beauty standard."
That day changed Guidotti's life. He left the fashion industry and educated himself about genetic differences, seeking out stories to share and people to photograph. His research led him to stark medical textbooks filled with images of despair and sadness.
Part of Guidotti's project, Positive Exposure, is to capture positive images of people with genetic differences to show medical students.
"It's not what you're treating, but who," he said. "When I photograph people, I tell them to be themselves. They are not a diagnosis or a disease."...
Jenny Howe understands the stigma firsthand. When she was pregnant, it was discovered that her baby had Ring 18, a rare chromosome disorder. She was told that if her son even survived, he would be profoundly retarded, and that she should abort. Howe was 22 weeks pregnant when they showed her photos of dead babies.
Howe chose to keep her baby and named him Deak. After he was born, the doctors wouldn't even let her hold him. They circled him, "like a freak show," waiting for her to react with horror.
Jenny and Deak
Jenny and Deak
"All I saw was joy," she said.
They encountered Guidotti at a Chromosome 18 conference when Deak was only one and Guidotti told her, "You have a beautiful son."
"He looked at me and my son and he just saw us as people," Howe said...
It's been six years since Kanney worked with Rudnick and Guidotti on the documentary and she feels like a new woman now at age 26. In that time, Kanney says she has gained self-confidence, grown and matured as a person, shed some of her shyness, lost weight and started returning the stares directed her way.
Kanney hopes that people with genetic differences can learn from her story and embrace who they are. "It's hard working through all of your feelings," she said. "But you have to focus on yourself, be happy and project it. Other people will see and feel that."
Witnessing this kind of transformation firsthand is what inspires Guidotti and gives him hope for the future. "We need to have the freedom to see beauty in the world," he said.

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