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Albinism in Culture: Visual ImagesStriking Images Affirm, Celebrate Albinism’s Humanity
After centuries of myth and misuse, projects by photographer Rick Guidotti and filmmakers such as Mashawna Thompson are putting a human face on albinism.
Whtehter to symbolize purity or to jar the senses, the genetic condition of albinism has always been a central image of religious, literary, and visual arts. Few albinism images are as iconic as Diane Arbus’s photograph “Albino sword swallower at a carnival, Md. 1970.” In Diane Arbus: A Biography (1984), Patricia Bosworth calls the image “one of her greatest,” adding: “Her arms are stretched out like Christ on the cross, but her head is thrown back so triumphantly you can almost feel the sharpness of the blade sliding down her throat.” (page 307) Albinism's Visual AppealThe portrait—a freak framed with an almost biblical reverence—crystallizes two basic responses people have to albinism, though its subject, Sandra Reed, experienced no feelings of exploitation. In a New York Times article (Sept. 14, 2003), Reed told Arthur Ludlow" “She would get a rapport going between you and her…We talked for quite some time, an hour, maybe two. She asked me if I would mind to be in full costume, and I said, 'No problem.” The photograph marks the end of albinism’s sideshow past. Like most representations of albinism, archetypal images eclipse the subject’s humanity. In the last 30 years, the growth of disability advocacy and the founding of the National Organization of Albinism and Hypopigmentation (NOAH) in 1982, has inspired photographers to portray the person first and the condition second. Rick Guidotti's "Positive Exposure"Positive Exposure was founded in 1997 by former fashion photographer Rick Guidotti, which, according to his website, “challenges the stigma associated with difference by celebrating the beauty and richness of human diversity.” Guidotti’s 1998 Life Magazine photo essay “Redefining Beauty” (4) was a breakthrough, presenting vibrant portraits of 10 persons with albinism of different ages and backgrounds, including NOAH’s then president Charla McMillan. Guidotti went on to photograph hundreds of persons with albinism, creating an exhibition that has toured the globe, with stops at the Maya Gallery at Yale University, the Kuala Lumpur World Trade Center, and the Conde Nast Lobby Galery in Times Square. In 2004, Guidotti’s photos appeared in Real Lives: Personal and Photographic Perspectives on Albinism, which profiles 12 persons with albinism in the United Kingdom. Archie W. N. Roy and Mackenzie Spinks wrote the text for the book, published by The Albinism Fellowship in Scotland. Mashawna Thompson's "Perception is Not Reality" Intuitive technology for creating and sharing multimedia enabled Mashawna Thompson of Edwardsville, Kansas to create “Perception is Not Reality,” a 10-minute video available on OneTrueMedia.com. The video opens with cinematic images of albinism intercut with common misconceptions printed in white letters on a black screen. The video’s main section contains photographs of Thompson’s 19-month old daughter Lyra, who has albinism, and about 30 other children of NOAH families, intersperses simple truths about the condition. The juxtaposition of myth and reality, of evoking fear and celebrating life is simple and powerful. Two touching songs, Billy Gilman’s “One Voice” and the Pretenders “I’ll Stand by You” provide the only narration. On her blog, “Parent of a Child With Albinism, Thompson says: “The only way to change society’s perceptions of albinism is through education. I am determined to educate everyone I possibly can, eliminating the ignorance and myths, so that Lyra can grow up with self-confidence, knowing that she is perfect just the way she is.”
The copyright of the article Albinism in Culture: Visual Images in Activism is owned by Andrew Leibs. Permission to republish Albinism in Culture: Visual Images in print or online must be granted by the author in writing.
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