Actors with Down Syndrome Raise Awareness

Sept. 14, 2012— -- When Gail Williamson was pregnant with her son Blair in 1979, there was no one on TV with Down syndrome to help make the diagnosis less scary.

Today, doctors tell parents that their babies will grow up and be like "Becky," a character on "Glee" who has Down syndrome -- and quite a bit of sass as she rocks a cheerleading uniform at the fictional William McKinley High School.

"It changes it for parents," said Williamson, the woman who connected "Glee" with Lauren Potter, the actress who plays Becky; Robin Trocki, the actress who played Sue Sylvester's big sister, Jean; and Jordyn Orr, the baby who made her "Glee" debut as Sue's daughter Thursday night. They all have Down syndrome.

And the ladies of Glee are not alone, said Willliamson, who now runs Down Syndrome in Arts and Media after spending 12 years at the California Governor's Committee on Employment of People with Disabilities. Actors with Down syndrome will also be on "Shameless," "American Horror Story," "Blue Bloods," "Legit" and "The New Normal" this year, changing the public's perception of the syndrome one viewer at a time.

Down syndrome hasn't been this prevalent in entertainment since Chris Burke played Corky Thatcher on ABC's "Life Goes On" from 1989 through 1993, Williamson said, adding that she remembers how life changed for Blair after it debuted.

"Waiters would turn to him and say, 'What would you like to eat?'" she said, adding that they'd previously asked her what he wanted instead. "People didn't realize they could talk to that face … I saw a change. I saw the difference. And I saw it again after 'Glee.'"

Potter, 22, was a baby when "Life Goes On" was on television, so she said she never had a television role model who had Down syndrome. But now, people will run across parking lots and line up for her autograph as if she's Santa Claus.

"I just felt like I wanted to cry," Potter said. "They were saying that I was their inspiration. These fans are really my heroes."

Her mom, Robin Sinkhorn, said the best thing is when college and high school students aren't afraid to say hello, and tell Potter that she inspired them to learn more about Down syndrome. Potter is now part of an anti-bullying campaign and is on President Obama's Committee for People with Intellectual Disabilities.

"It's pretty amazing what this kid has done, and this gift that 'Glee' and the producers of 'Glee' have given her," Sinkhorn said. "She's reached out to a lot of people."

To the National Down Syndrome Society, the awareness from TV shows is a huge help because it generates interest in their website, research and fundraising, said Julie Cevallos, the organization's vice president of marketing. She said web traffic data to ndss.org isn't available as far back as late 2009, when Potter made her "Glee" debut, but they've seen a 10 percent increase between 2010 and 2011.

Considering that the average life expectancy for a person with Down syndrome went from 25 in 1983 to near 60 today, according to NDSS, there's plenty of health research to be done.

For instance, Robin Trocki had to be written off "Glee" because she has Alzheimer's disease, which is common in people with Down syndrome because the gene is located on chromosome 21, of which people with Down syndrome have three copies instead of two. (Sue's new baby on the show is named Robin for her.)

NDSS is also working on a bill that would save families tax money if they include a person with Down syndrome.