Meet The Little Girl Who Wiped Out Government Use Of The R-Word

The Marcellinos started the national conversation around government use of the R-word, inspired by their daughter, Rosa (front). Courtesy Marcellino family

EDGEWATER, Md. -- "Are you ready?" Nina Marcellino asks from her kitchen counter.

"I'm ready!" says her daughter, Rosa Marcellino, from around the corner and out of sight, in the dining room of her family's suburban Maryland home.

In an instant, the 14-year-old Special Olympics athlete and disability-rights activist marches into the kitchen and introduces herself, resplendent in shorts, bare feet and an older sibling's hand-me-down T-shirt that features Biggie Smalls wearing a gold crown.

Usually after a long day at school, Rosa jumps into her pajamas and stays in them. "I'm tired," she explains.

Rosa makes an exception on this day because, well, she's a pro at this media stuff. She has been doing it for more than five years, ever since she became the adorable face of the movement to erase the term "mentally retarded" from government lexicons. With a little help from her family, the brown-haired kid succeeded in removing the "R-word" from official government documents in her home state and in federal bureaucracy. The historic legislation is known as "Rosa's Law," part of a 30-year wave of activism that has changed how we speak about people who have difficulties in learning and cognition.

"The most recent change from 'mental retardation' to 'intellectual disability' was unique in that much of the impetus came from people with intellectual disability and their families," wrote Marty Ford, Annie Acosta and T.J. Sutcliffe in an April 2013 article in "Intellectual and Developmental Disabilities," a scholarly journal. "This impetus grew in the public realm and played out in open debates in the organizations devoted to their interests, in the halls of state legislatures and Congress, resulting in terminology changes in federal law through Rosa's Law."

Rosa's Law went from notion to national statute in a little more than two years, capped in October of 2010 when President Obama signed it at the White House. "We went to the White House together," Rosa says matter-of-factly, "and he is president, and he is handsome to me. And so we went to his house to [see] my law be signed. And I got a big hug."

Did she just say the commander-in-chief was handsome? "Yes," she says, cracking up.

Rosa is a teenager, so she notices those things. She reveals that one of her teammates on her Special Olympics 4x100 meter relay is also "handsome," as well as the fastest runner she has seen in her life.

Rosa is swift, too. She has a new gold medal in her favorite Special Olympics event, the 100 meters, to prove it. "I'm fast at the beginning, and at the end," she says. Her gold medal in the 100 and relay races were part of a busy day at a Maryland Special Olympics meet in June, which also saw her compete in the 50 meters and the softball throw. She did all this despite coming off surgery to repair kneecap and ligament problems resulting from Down syndrome. Rosa is a gamer.

So is her family. Sports are "huge" for the Marcellinos, says Rosa's 20-year-old brother Nick, the oldest of Nina and Paul's four children, and a junior engineering major at North Carolina State. All of Rosa's siblings -- Nick, Madeline, 18, and Gianna, 16 -- grew up playing lacrosse in the lax-mad region. Nick started in goal on South River High's unbeaten 2012 Maryland state championship team and literally saved the team's perfect season in the title game.

He continues to play club lacrosse at NC State. It's good competition, he says, with plenty of talented players -- you can tell they're good because of the "lettuce" hairdo flowing from the backs of their helmets -- but not so serious that it interferes with his studies.

Meanwhile, Nina, a special-needs education teacher, and Paul, who runs a flooring business, devote their off hours to an adaptive lacrosse program for athletes with disabilities.

From 2008 to 2010, though, most of the family's off hours went to Rosa and her law. The quest began when Nina was called into a meeting at Rosa's elementary school and informed that her child's Individual education plan, a document that outlines goals for children receiving special needs services, changed her status from "other health impaired" to "mentally retarded." This despite Nina's request when Rosa first enrolled to make sure she wasn't labeled "retarded," due to the stigma the word carries. "It was bad," Nina recalls. "They called the meeting to change her code, and I was blindsided. I mentioned that they probably would never call an African-American girl the N-word, and they were really uncomfortable with that."

How uncomfortable? "When you have those meetings there's a transcript, and they write down everything you say, but they wouldn't put that in the transcript," Nina says. "And I said, 'See, it makes you uncomfortable.' The same thing goes with the R-word. To us, it is kind of equivalent."

Paul came by to take Rosa out of school for the rest of the day. "It was a shock," he says, "because we hadn't known this was coming."

Rather than stew, the Marcellinos took action. The word "retarded," introduced into official language in the 1950s to replace terms such as "moron," had become so outdated -- and so often used as a slur -- that advocacy groups began to abandon it in the 1990s. Nina knew that a Virginia advocate named Jill Egle had helped get a law passed in that state to eliminate the word from all government use, including schools. So Rosa's family set out to do the same on a national scale. Nina contacted Maryland Sen. Barbara Mikulski, who made her a promise: Get a law passed in Maryland, and I'll take it to the U.S. Congress.

The Marcellinos found a legislative champion in Maryland delegate Ted Sophocleus. He had a history of pushing laws to improve the lives of those with disabilities, and his grandson, Nicholas Smith, has autism. "It was something that should have been done a long time ago," Sophocleus says. "It was so distasteful to me, this terminology, even before my grandson came along."

Sophocleus quickly assembled a broad work group of stakeholders, from educators to wheelchair users to members of the Veterans Administration, and dug into the process of writing legislation. "I tried to include every aspect of people with disabilities," he says.

For months, often in the meeting rooms of the stately brick House of Delegates in Annapolis, Sophocleus & Co. hammered out details to make the legislation airtight.

Meanwhile, the Marcellinos took the bill on the road, explaining Rosa's Law to any group that would listen. They knew they were part of a bigger movement. The "Spread the Word to End the Word" campaign aimed to stamp out the slang use of the R-word. The Marcellinos' focus? "Make sure professionals no longer used it," Nina says. Her road show had a secret weapon: "I always took one of the kids with me to speak."

By the time Sophocleus' bill was introduced, he had lined up dozens of co-sponsors. "It was not a difficult sell," he says. House Bill 20 sailed unanimously through both houses of the Maryland legislature by April 2009. A year and a half later, and less than a year after Mikulski introduced it in the U.S. Senate, it was federal law, too.

Everyone associated with Rosa's Law agrees the highlight was when Nick, at the time a shy eighth-grader with a helmet of hair and a bit of an early Michael Cera vibe, spoke before the Maryland General Assembly. "I thought I'd be testifying in front of 10 or 15 guys, and like family members," he says. "And then I got there and looked around, and it was a big U-shaped room full of people staring at me the entire time. But I kind of just zoned out and started talking, and it worked out fine."

Better than fine. Just read his testimony and try not to well up. "My sister might be one of the smartest kids I've ever met, and that's the truth! It might take her longer to learn some things, and you can't always understand everything she says. She'll never be 'just like' most people, but hopefully neither will I."

By the time he concluded with, "Thanks for your time and for doing the right thing," the whole statehouse was aswoon. "Everybody was sitting there with their mouth dropped open," Sophocleus says, "almost in tears."

Like any good politician, Nick drafted help to get his message out; unlike most pols, he credits his speechwriters. "My sisters did all the writing parts," he says. "I was never that good at writing so I just let them handle that, and I didn't mind speaking at all."

In the five years since Rosa's Law passed, the Marcellinos have kept their activism alive through their Davidsonville adaptive lacrosse program, in which athletes from ages 8 to 52 compete in the fast-growing sport. They've drawn as many as 40 players and up to 100 volunteers in a season, many of them from rival high-school teams. The only problem: Few localities field adaptive lacrosse teams, and the players get tired of the same old faces. When they've tried to pitch the idea to other groups, Nina says, "I think people are really skeptical when they hear about athletes with disabilities and a stick." She hopes that stigma, like the use of the R-word, can change.

Rosa isn't big on lacrosse. These days, she'd rather play improvised trampoline basketball games in the backyard, passing the ball to Nick just before he launches himself for dunks, then merrily getting bounced around when her brother lands.

The little girl who changed the world by changing a word is now written about in college textbooks, and she dreams of going to college herself one day. One victory for the disabled-rights movement has been the development of college programs for people like Rosa. But she doesn't take herself too seriously. She loves to hang out with her family and laugh and crack jokes.

"You're a trip," Nick says to her, shaking his head. A few minutes later, on the other side of the kitchen, he pats and strokes his sister's back, like a brother, like a friend treating her like one of the smartest kids he has ever met.