February 26, 2009
One day, Nancy Gianni was called into her daughter’s preschool by the principal and a social worker to discuss how uncomfortable GiGi was making the parents of other students.
GiGi has Down syndrome.
“They said she had done nothing wrong,” Gianni said. “She simply wears her diagnosis on her face and that was enough for these parents to be concerned.”
She added, “I remember sitting there as if I had just been stabbed in the heart.”
Down syndrome is the result of an extra chromosome, which often causes mental retardation. The severity can vary.
What these parents were failing to see was the social, smart and independent child GiGi actually is. She got along with others, could already spell some words and didn’t need any help in the bathroom. But, Gianni, who lives in Barrington, realized it wasn’t just these parents who failed to see beyond the physical signs of a genetic disorder.
So Gianni, founder of GiGi’s Playhouse, an awareness center for children with Down syndrome and their parents, teamed up with Barrington photographer Thomas Balsamo to create a traveling exhibit of black and white portraits of individuals with Down syndrome. All subjects were photographed from the chest up.
The exhibit, “i have a voice,” will be on display at the Ela Area Public Library in Lake Zurich March 1-30.
“I love the pictures,” Gianni said, “because it shows that there is so much more to our kids than just their diagnosis.”
Balsamo had previously published a book of photographs called Souls: Beneath and Beyond Autism, which won the Autism Society of America’s 2003 Literary Work of the Year. The photos, he said, give a voice to a segment of the population that is usually misunderstood by the public.
“These individuals do have something valuable to say,” he said. “They have a challenge. They try to fit into a public that doesn’t understand them so well.”
He concentrated on closely cropped shots of their faces, an area that tells the most about somebody, particularly the eyes.
“I strive to capture a glimpse of the soul through the eyes,” he said. “I felt I was able to capture the essence of who they were.”
That is exactly what the title of the exhibit, all in lower-case letters, wants people to know.
“The small ‘i’ represents the children in the exhibit,” Gianni said. “They are quietly trying to tell you, ‘Get to know me, I am important.’”
The library is perfect for the exhibit, said Christy Wagner, Ela Area Public Library outreach coordinator, because part of the library’s responsibility is to educate the community, which turned out by the thousands to visit the Anne Frank exhibit last year.
“It’s the perfect venue for exposing people to the beauty of this exhibit,” she said.
For more information, call the Ela Area Public Library, (847)438-3433.
Articles of Interest | heather, May 19, 2009 9:57 pm | 
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