Photographer Captures the Beauty in Those with Genetic Diseases

Award-winning former fashion photographer Rick Guidotti recently visited Einstein's Robbins Auditorium, where he presented "Positive Exposure," as part of medical students' Molecular and Cellular Foundation of Medicine (MCFM) course. Through an array of slides and videos, Mr. Guidotti detailed his work photographing individuals with genetic disorders, designed to help the public see such individuals in a completely different light—with a focus on each person's innate beauty.

Photographer Rick Guidotti during his "Positive Exposure" lectureMr. Guidotti was introduced to the students, faculty and residents in attendance by Dr. Robert Marion, a pediatric geneticist who is director of the division of genetics in the department of pediatrics; the division and department co-hosted the lecture in conjunction with the MCFM course, along with the Rose F. Kennedy Intellectual and Developmental Disability Research Center and the Rose F. Kennedy University Centers for Excellence in Developmental Disabilities (which includes Einstein's Children's Evaluation and Rehabilitation Center).

Mr. Guidotti offered an engaging presentation, describing his career photographing supermodels like Cindy Crawford and Claudia Schiffer, who are household names. He recalled, "Although my career was rewarding, I grew tired of being told who or what was beautiful. I felt that beauty isn't just on the cover of magazines—I see it all around me."

A Chance Encounter Offers Inspiration

He then traced the beginnings of his "Positive Exposure" project to a chance encounter with a beautiful girl whose starkly white hair captured his attention. "She had albinism, a congenital disorder characterized by the absence of pigment in the skin, hair and eyes," explained Mr. Guidotti. "She got on a bus before I could speak to her, but she inspired me."

Grace, a young girl with Down's syndrome (Photo courtesy of Rick Guidotti)He looked into the disorder, only to find startling and villainous interpretations of individuals with albinism in film and depressing medical photographs in scientific textbooks, with black bars covering the subjects' eyes.

"I saw that I had an opportunity to make a difference," he said, describing how he approached and eventually partnered with a genetic support group for albinism in a joint effort to portray the inherent beauty and humanity of those with the disorder. Their work together led to a five-page spread for Life magazine, titled "Redefining Beauty."

"I photographed a 17-year-old with albinism one day after photographing Cindy Crawford, and I did the shoot in the same exact fashion, with fans blowing and music playing," Mr. Guidotti recalled. "She walked in hunched over and not making eye contact, clearly lacking self-esteem. I put a mirror in front of her and said 'Look at yourself. You're magnificent.' And when she looked, she saw what I saw, and her shoulders went back and she struck a pose."

Creating Awareness Using "Positive Exposure"

His success working with the albinism community blossomed further, into an attempt to change the way society sees people with different genetic disorders. Following the Life spread, Mr. Guidotti was approached by the Genetic Alliance, a coalition of more than 1,200 disease-specific advocacy organizations, about conducting similar shoots of people with other disorders. Mr. Guidotti showed images depicting some of these individuals, while describing their respective disorders and sharing recollections of his time with each person.

Billy, a boy with Marfan's syndrome (Photo courtesy of Rick Guidotti)A question-and-answer session followed Mr. Guidotti's presentation. When one student asked him what his motivation is, he responded, "Meeting people and listening to them—helping kids love themselves."

Inspiration for Student Reflection

The good feelings generated from his talk carried over after the event, as Einstein students and staff alike approached Mr. Guidotti to discuss ideas and to thank him for his moving presentation.

"Throughout his talk, Rick repeated his project's motto, 'Change how you see. See how you change,'" noted Dr. Howard Steinman, director of the MCFM course. "This was particularly relevant to our medical students, since it's important that they reflect on how their perception of patients is influenced by the patient's outward presentation."

Photos from Mr. Guidotti's "Positive Exposure" collection are part of an exhibit on rare disease research currently on display in Einstein's "Main Street" hallway, in the Forchheimer building. The lecture served as a kickoff for Einstein's overall celebration of Rare Disease Day, which will culminate on Friday, February 28, 2014, with a special reception at the exhibit site and includes research posters detailing studies of rare disease being conducted by Einstein investigators.