When her son Nate was born with Down syndrome, Holly Simon wanted to change how the world saw him and other children like him.
Frustrated that she couldn't change the world on her own despite years of trying, she has now set her sights on something closer to home. Teaming up with photographer Mark Randazzo, the pair photographed children who do not fit, as Simon says, "in the box" for a photo exhibition.
"I want to raise awareness that it is not OK to ever call a child the R word," she says. "I may not ever be able to change the world, but I can make a difference one person at a time."
The photo exhibition is part of Simon's long-standing Holly Days fundraiser, held every year around Nate's birthday, for the National Association of Down Syndrome.
"We all fit," Simon says about the children with Down syndrome and the other children in the exhibition who have unique personalities. "I just want them to be looked at like you look at your own child."
Across the pond, it's "mong" or "spazz." In Mexico, se dice "mongo" or "mongolito." In Germany, it's "behindert" or "spast."
In Australia and New Zealand and much of Europe, like in the United States, it's plain old "retard."
People all around the globe resort to their own translations of the "R word" when they talk about workmates and family members who just can't see the simple brilliance of their personal points of view, or the urgency of doing things the way it's clear they need to be done.
But for families dealing with the day-to-day challenges of disability and cognitive delay, the derogatory slang word is just another challenge to overcome.
Spread the Word to End the Word, an organization hatched by Palatine's Soeren Palumbo, is waging worldwide war on the "R word." Now more than 10 million strong, with followers from places as far-flung as Antarctica, India and China, Spread the Word wants to make the R word the new N word.
"It's a movement to strike the demeaning use of the word 'retard' from today's language all around the world and replace it with a more affirmative R-respect," Palumbo says.
Palumbo came to understand the hurtful impact of the derogatory label as a big brother to a sister with a cognitive disability. A recent Notre Dame graduate who now works with Special Olympics, Palumbo first started lecturing about the devastating repercussions of dehumanizing terms for people with disabilities while a senior at Fremd High School in Palatine.
He takes no prisoners when people plead ignorance.
"No one ever says, 'Oh, I thought that was a nice word,'" he says. "It's a convenient shorthand for rationalizing and dehumanizing a certain segment of people."
It's a "gateway issue," Palumbo says about using the word that stereotypes people with disabilities. "It opens the door to bullying, harassment and abuse."
Not in our town
The Hollis family of Elmwood may be the poster family for R word slurs. Their two youngest daughters, 4 and 5, adopted from the Ukraine, have Down syndrome.
One morning last April, Todd Hollis, a teacher and football coach at the local high school in the small town about 30 miles west of Peoria, backed the family car out of the garage to take the kids to school. As the garage door came down in front of them, they all gaped in horror at the defacement that had happened overnight.
"Reetodz, bitchez, 4-Eyes, Dead" was painted on the garage door.
Hollis grabbed the remote that sent the door careening back into the garage ceiling. But he wasn't fast enough to keep the kids from reading the frightening graffiti.
"They were very scared and had a lot of questions," Anne Hollis says. "They asked what the word means and why people hate Down syndrome."
They were questions without answers, she says.
"Even at 36, I can hardly comprehend it."
It wasn't until the family came home that afternoon that they saw, "Get outta town, reetard," scrawled across the house siding just outside the girls' bedroom window.
"It ripped my heart out to think someone had done that with my sweet precious girls sleeping right on the other side of that wall," Anne Hollis says.
Much like Palumbo, the Hollis family turned the hate into a tool for consciousness raising. As the community rallied to support them, the Not in Our Town Elmwood organization budded out with blue ribbons on trees all through town. It evolved into a public awareness campaign that raised $60,000 to bring messages of tolerance and sensitivity to 22 area schools.
"In the end, the vandals' actions were counterproductive," Anne Hollis says. "Their cowardly act strengthened an army of people who love our girls and came forward to support them."
The making of a movement
Palumbo remembers feeling the debasing eyes on his sister in the supermarket. He heard the whispered slurs as they waited in the checkout line.
"It's all a part of the stigma, the social barriers, the abuse that people with disabilities face every day," he says. "For someone in their family, it is an experience that is part of growing up."
His future as an activist with a worldwide following took flight with a speech Palumbo first gave at a school assembly as a senior at Fremd High School in February 2007. That was a year before Special Olympics launched a website, r-word.org, to take on the tactless use of the R word in everyday language.
"I can only tell you what it means to me and people like me when we hear it," Timothy P. Shriver, chairman and CEO of Special Olympics, said in October 2010 when President Barack Obama signed a bill that purges the terms "mental retardation" and "mentally retarded" from federal health, education and labor policy.
Known as "Rosa's Law," the law is the upshot of an anti-R word crusade a Maryland family launched to combat harassment of their daughter with Down syndrome. It replaces the R word with "people-first language" like "individual with an intellectual disability" and "intellectual disability."
In 2009, Palumbo teamed up with Shriver's son, Tim Shriver Jr., during an internship with Special Olympics while at Notre Dame. The two launched a grassroots, youth-oriented incarnation of the anti-R word campaign they dubbed Spread the Word to End the Word, and began organizing consciousness-raising rallies in schools and universities around the country.
Over three years of recruiting people to reject the R word, the campaign has amassed more than 10 million pledges from people around the world to "support the elimination of the derogatory use of the R word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."
Chicago mayor Rahm Emanuel's name is among them. Last year, he apologized for using the R word at a private meeting when he was White House chief of staff in 2009.
Sticks and stones
"Despite 'sticks and stones' upbringings, we all know the marks of physical abuse to be temporary, while the destructive power of language scars the psyche indelibly," Palumbo and Shriver wrote in a recent blog for the Huffington Post.
While only 25 percent of general education students report being bullied, this number swells to nearly 75 percent when speaking of special education students, the blog says. Studies show that as many as three in four special education students face "chronic and pervasive" peer harassment in the classroom.
After years of being bullied with the R word, people with intellectual disabilities internalize the degradation the word dumps on them and begin to self-identify as a "retard," Palumbo says.
"Glee" actors Jane Lynch and Lauren Potter, who has an intellectual disability, appeared at the end of a public service announcement on the season finale in May with a "Not Acceptable" message that was the work of Spread the Word to End the Word and its sister group, the mentor program Best Buddies.
"The R word is without a doubt the new N word," says Eileen Murphy, state director of Best Buddies Illinois, headquartered in Chicago.
"We need to raise public consciousness about the detrimental and hurtful effects of the word 'retarded' and wipe it out of language for good," she says.
Robyn Monaghan is a freelance writer living in Plainfield.
This article appeared in the November 2011 edition of Chicago Parent.
Robyn Monaghan is a mother and long-time journalist living in the Chicago area.
See more of Robyn's stories here.
Contact Robyn at firstname.lastname@example.org
Support our friendship programs in Illinois: DONATE or VOLUNTEER at Best Buddies today.