Pulse
Beatiful People
Through photography, Rick Guidotti captures the individuality and beauty of his subjects, all of whom have genetic disorders and conditions.
What can a fashion photographer teach doctors about people with genetic disorders?
Plenty, according to Bonnie LeRoy, M.S., director of the University of Minnesota’s Graduate Program in Genetic Counseling. LeRoy was so impressed by the work of New York photographer Rick Guidotti when she saw him present his images of people with genetic conditions at national conferences on albinism and genetics that she spearheaded an effort to bring him to campus last spring.
Guidotti has traveled the globe, focusing his lens on children with genetic disorders ranging from albinism to fragile X syndrome. Along the way, he’s taken thousands of photographs and developed a powerful message—that being different, even when it stems from a genetic aberration, is beautiful.
Guidotti shared his images of children and adults last April at an event cosponsored by the university’s Center for Bioethics and Institute for Human Genetics, “In the Eye of the Beholder: Celebrating the Richness of Human Diversity.”
A New Aesthetic
Guidotti told an audience of health care providers gathered in the Mayo Auditorium that his gaze shifted from fashion photography one day about 10 years ago, when he saw a 12-year-old girl with albinism waiting for a bus on a New York street. “I saw beauty,” he said of that instant.
The experience got him thinking. As a photographer for magazines such as Elle, Harper’s Bazarre, and Marie Claire, he had photographed some of the world’s most beautiful women. But it was beauty as defined by the fashion industry and magazine editors. It had nothing to do with his sense of aesthetics.
Intrigued by the girl, Guidotti began researching albinism, finding information about the condition and photographs of people with it in medical textbooks. The images were dreary, black-and-white snapshots of nameless people with a white bar masking their eyes. He realized this was how most physicians and other health care professionals probably learned about the condition, and he was appalled that this was their introduction to the people who lived with it. He had an idea: to photograph people with albinism so that others could see what he saw—strength, beauty, courage, personality.
He pitched the concept to the National Organization for Albinism and Hypopigmentation, expecting to be met with an enthusiastic response. Instead, worried that the images would be exploitative, the organization’s leaders rejected the idea. But enthusiasm and persistence eventually won them over, and Guidotti convinced the organization to partner with him in a photo shoot.
Guidotti says his first subject was a “gorgeous” girl who had been mercilessly teased. He treated her and the others selected for the shoot like professional models, turning on the lights, music, and fans in his studio while he photographed them. The resulting photos of stunning fair-haired, light-skinned men and women standing before black backgrounds were published as the feature “Redefining Beauty” in Life magazine in 1998.
Since then, Guidotti has devoted himself to changing perceptions about people with genetic differences. He formed the arts organization Positive Exposure, which seeks to present positive images of people with physical and mental differences and promote their human rights. And he has traveled throughout North America, Europe, Africa, Australia, Asia, and the Pacific islands to take and share his pictures.
In addition to delivering the message that individuals are more than their diagnosis, he also shares information about rare genetic conditions, in some cases debunking myths and superstitions. In many parts of Africa, for example, people with albinism are ostracized, shunned, and sometimes killed. Guidotti hopes he can change the thinking that leads to both violence and subtle discrimination. “A little information and awareness goes a long way,” he says. “And once there’s a shift in attitude, it never goes back.”
Focusing on Medical Students
Guidotti is now extending those efforts to the medical community. According to the Positive Exposure website (www.positiveexposure.org), a recurring theme expressed by many individuals with genetic disorders and their families is a desire for physicians to better understand them so that they can help them live with the condition.
Too often, physicians focus on the disorder instead of the individual, many complain. “Medicine is doing the best it can,” Guidotti says, “but [doctors] haven’t had the chance to see things from a different angle.”
To help them gain that perspective, Positive Exposure staff are now working with medical students to develop an online photo and video database and social networking site where they can learn about genetic conditions in a new way. Students researching a condition will encounter not the old black-and-white images from medical textbooks but Guidotti’s colorful photographs and videos showing kids and adults in action. They’ll also be able to access podcasts of interviews with and blogs by people with various conditions.
Guidotti emphasizes that it’s important to show the range of ability of individuals with different conditions. Bonnie LeRoy believes physicians and other health care providers need to see this variability in order to help parents recognize the potential of their children—to see who they are rather than who they aren’t.
She felt it was important to bring Guidotti to Minnesota because lessons about such subtleties can’t always be learned in books. “You can read about a lot of things, but you can’t really feel them,” she says. “The pictures hit you right in the face.”—Carmen Peota