In an era when the possibility of eliminating certain conditions through genetic engineering is rapidly nearing, a photographer and an epidemiologist hope to use a traveling art exhibit to help people see genetic conditions as a contribution to diversity rather than a disease.
Positive Exposure is a nonprofit organization that challenges the stigma attached to genetic differences through powerful images, compelling personal stories and thought-provoking forums. The organization’s traveling art exhibit, “The Spirit of Difference,” will be on display at the International Institute and Palmer Commons through April 25.
Rick Guidotti, director of Positive Exposure, is an unlikely advocate for people with genetic conditions. After years of snapping pictures for the fashion industry and being confined to the strict parameters of beauty as defined by the media, Guidotti said he knew he had to change his line of work when he spotted a young girl with albinism — whom he called “stunningly beautiful — waiting for a bus in New York City. Guidotti said he was struck by the fact that albinism, a genetic condition that results in the reduction or loss of pigmentation in the skin, hair, and eyes, would not be considered beautiful by his employers.
Inspired to learn more about the condition, Guidotti consulted books and found stark and sober photographs of people with albinism — “images of despair and sickliness,” he said, which sharply contrasted the vibrant, laughing girl he had seen on the street.
Troubled by this disparity, Guidotti said he became determined to portray those with albinism and other genetic conditions in a positive light and, as a result, bridged the unlikely couple of arts and genetics to form Positive Exposure.
When he began photographing people with albinism and other conditions, Guidotti said he could see his subjects’ change in self-confidence reflected in their visual appearance. Hunched shoulders and downcast eyes eventually melted into enormous grins throughout the photo shoots.
Diane McLean, an epidemiologist and co-director of Positive Exposure, joined Guidotti in 1998 after seeing his photographs in Life Magazine. Because the subjects had never been given the opportunity to define themselves on their own terms, she suggested to Guidotti that he add their words and stories to the photographs. Guidotti agreed and asked McLean to join the project and interview the subjects he was photographing.
The directors kicked off the panel discussion, sponsored by the Health Sciences Scholars Program and Life Sciences and Society Initiative at Palmer Commons on Wednesday and shared many of these personal stories.
Guidotti recalled visiting an orphanage in West Africa where the nurses would not touch the children with albinism for fear of becoming afflicted with the “curse.” One mother of a girl with albimism, he said, placed her daughter out in the sun, hoping that she would get as dark as a typical South African girl. After a day of shooting pictures, he said, the nurses were “blowing raspberry kisses and playing with the kids.” Another participant from Fiji said that albinism isn’t so much an issue in her community but she never received the opportunity to share her experience until Positive Exposure came along.
Guidotti and McLean said the project has been a success not only because it has challenged preconceptions of genetic conditions through education and lively images, but also because it has radically changed both the subjects and the audiences in terms of how they view themselves and the diversity that surrounds them.
Since its inception in the pages of Life magazine in 1998, the project — based on the seemingly simple idea of self-advocacy and the celebration of difference — has grown into a multitude of programs that aim for sustainable social change through collaboration and education Guidotti said. These programs include training health professionals, instigating discussions on diversity in schools and working with organizations, such as the National Organization for Albinism and Hypopigmentation, to showcase affected people as the unique human beings they are. McLean said she hopes that “the albinism would be used as a metaphor for addressing all differences.”
For more information on “Positive Exposure: The Spirit of Difference,” see www.rickguidotti.com.