Rethinking genetic disorders

When photographer Rick Guidotti started looking through medical books for information about the genetic disorder albinism, all the images he saw depicted sadness and lifelessness.

People with the condition lack pigment in their hair, skin and eyes. Many grow up teased and shunned. Pictures often show them unsmiling, eyes downcast and hunched over.

It was a sharp contrast to the laughing, confident young woman with albinism whom Guidotti, a fashion photographer at the time, had seen at a New York bus stop. The chance encounter was what sent him looking for more information on the disorder.

"I had always kind of worked within the parameters of the beauty standards," said Guidotti, explaining that fashion editors for the magazines for which he worked dictated what was in that season. "As a visual artist, I saw beauty outside of that standard."

Since then, Guidotti has taken hundreds of images of people with albinism and other genetic disorders in a quest to raise awareness and promote acceptance of differences. He has partnered with many of the advocacy groups pushing for more research on genetic disorders and has provided images for use in medical and nursing education.

Guidotti talked to science students at Richmond's John Marshall High School and to nursing and medical students at Virginia Commonwealth University this week about his work and embracing diversity. An exhibition of his work is at Art Works in Richmond through Feb. 22.

"One of the misperceptions we really wanted to address is the fear of genetic disorders being contagious and people's fear of individuals because they look different and because they don't understand," said Sarah Elsea, an associate professor at VCU and an expert in human genetics.

Elsea arranged for Guidotti's visit through a National Science Foundation grant supporting genetics education in secondary schools.

Medical textbooks still have the types of lifeless images Guidotti described, but there is some movement, Elsea said. One of Guidotti's images of a young man with Marfan syndrome, a connective-tissue disorder in which a person has longer-than-usual arms and legs, shows the man in a swimming pool, arms outstretched and with a big smile. In contrast, a textbook image showed two tall, lanky bodies backed up to a measuring stick and with black bars across the faces to obscure identification.

"The textbooks for undergraduate education are becoming very different," Elsea said. "He is providing some images. I believe it will change, but it's going to take some time. I think a real generational change will have to happen to see that change in publishing."

Guidotti's work has taken him all over the world. Genetic differences scorned in one society might be embraced in another, he said. One of his photos shows a woman who has albinism with her four children in Fiji in the South Pacific Ocean.

"She was embraced by her community," Guidotti said. "So her definition of herself is not a person with albinism but as a mom, churchgoer, community member."

That is markedly different from what is happening in Tanzania, a country in East Africa, said Guidotti, who recently returned from there.

"Witch doctors are saying to businessmen in Tanzania, 'If you bring me the legs of an albino, I will make you a potion that will make you rich,'" Guidotti said. "What's happening is, these kids and adults are being murdered."

Guidotti said some families have put their children in hiding at special guarded schools. He and others are working to bring international attention to the issue.

Contact Tammie Smith at (804) 649-6572 or .