Fighting the Stigma of Albinism

Like others with albinism, McGowan does not see life in "detail" because the optic nerve connections are misrouted in the brain. "I can see it's a car driving down the street and can't read the license plate or see the face of the driver."

McGowan's parents were accepting and he was educated in mainstream classrooms. But many with albinism are relegated to special classes or schools for the blind, which does more harm than good, he said.

"If you limit highly functioning kids and put them in with kids who are much more visually impaired, it lowers the horizon and bar for where they can go," said McGowan."

McGowan was teased as a child, and even today, as director of electronic information in the Chicago court system, he has incidents.

"I am a middle-aged guy in a corporate business suit and briefcase and I walk a half mile home," he said. "I get 100 feet past the bar and some goofball yells out at the bar at the top of his lungs, 'Hey, albino.' He'd probably been drinking all day but it hadn't happened since I was an adolescent."

Because albinism crosses all races, discrimination is not limited to random jeering, McGowan said.

"When bleached-out kids are born to families that are Mediterranean, Hispanic, Asian or African-American, sometimes there is ignorance and a question of lineage -- 'that isn't my baby,'" McGowan said. "There are also extreme cases of rejection."

McGowan and Guidotti see imagery as one vehicle for overcoming the demoralizing myths of albinism -- prejudice that arises from the same ignorance about all human differences.

When Guidotti first began working with NOAH, he met Chrystine, a 5-foot- 8-inch tall teen with albinism. She was later part of a photo spread in Life magazine.

"She was so beautiful, but her shoulders were hunched, her head was down and she made no eye contact," he said. "She'd been tortured and teased her whole life and had no self-esteem."

By the time the studio music got going and the camera lights were flashing, Chrystine began to see herself "for the first time" as a beautiful girl, Guidotti said.

"She left kissing everyone on their cheeks," he said. "Right before my eyes she was transformed, and I understood in that moment I was a new advocate and ambassador for change."

Today, Chrystine works with special needs children on a farm in Oregon. "Chrystine is so much more than her albinism," Guidotti said.

With a friend, Guidotti later received a Cornell University Medical School fellowship to study cultural perceptions of people with albinism in the South Pacific. Today, his photography is recognized worldwide.

"It's a metaphor for all differences," he said. "We are the same and we are all different in our sameness."

Click here to view Positive Exposure photographs.

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