Sunday, April 19, 2009

Disability advocates tell Texas lawmakers why the R-word hurts

From the Austin American-Statesman. (The Columbus Dispatch reports that Ohio is about to drop the MR words from its MRDD office in favor of Ohio Department of Developmental Disabilities. It also reports that 44 states have dropped the term "mental retardation" from usage.)

Consuelo Castillo, pictured, who has an intellectual disability, told the Texas Legislature her feelings about the term "mental retardation": "To us, we don't have labels. We're just human beings."


Claudia Cardenas has heard the "R-word" her whole life.

Ugly retard. Stupid retard. Slow retard.

She's been taunted in school cafeterias, classrooms and hallways; by relatives, classmates and strangers; at home, in public and in front of friends. And it always hurt.

"I've been called retarded all my life," said Cardenas, a 39-year-old Beeville woman who has her own apartment, volunteers regularly and wants to start a business that is an advocate for people with disabilities. "It made me feel like I was nobody."

It's been decades since advocates began fighting to end derogatory language about people with mental disabilities. Today, some once-common terms used to describe them — "feebleminded," "Mongoloid," and "imbecile" — are all but gone. But the word "retarded" remains.

Now the R-word, as disabilities advocates call it, is the target of a national campaign to eliminate its use in both government and casual conversation. Through legislation and public relations campaigns, they're trying to change the country's vocabulary.

State Sen. Judith Zaffirini, D-Laredo, is pushing a bill that would ban terms including "mental retardation" in all state statutes and resolutions and replace them with such phrases as "intellectual disabilities." The Austin Travis County Mental Health Mental Retardation Center plans to rename itself without the phrase "mental retardation."

The national Special Olympics kicked off in March the "Spread the Word to End the Word," campaign with 700 rallies across the country. It sent buttons, T-shirts, stickers and wristbands to 100 high schools across the country.

And last fall, Special Olympics Texas began a $150,000 campaign — which included 105 billboards across the state — that said "Erase the R-word." The effort was primarily funded through a grant and in-kind donations.

"This is a word that carries hate," said Margaret Larsen, president of Special Olympics Texas. "This is a word that carries hurt. It's degrading and painful."

Since about 1900, the phrase "mental retardation" has been used by doctors to describe a disability marked by lower-than-average intelligence and limited daily living skills. It is still used in many state and federal statutes across the country.

But by the 1960s, the phrase and its variations were used to ridicule people with disabilities. Susan Eason, executive director of the Arc of the Capital Area, which helps people with mental disabilities, has seen that cruelty leveled at her 33-year-old daughter, who has mental disabilities and uses a wheelchair.

Once, Eason said, she was wheeling her daughter through a grocery store when a stranger snapped, "Get out of the way, retard."

Since the late 1980s, advocates have promoted "people-first language," in which phrases such as "the mentally retarded" are changed to "people with mental retardation."

But it was the 2008 movie "Tropic Thunder," which routinely dropped the R-word, that triggered widespread outcry by advocacy groups.

"We decided enough is enough," said Kirsten Suto Seckler, director of Global Brand Marketing and Awareness for the national Special Olympics. "We did a public protest of the movie."

Since launching the campaign, the organization has gathered more than 40,000 online pledges through r-word.org from people vowing to stop using the word in everyday speech.

People with disabilities prefer "intellectual disabilities," said 38-year-old Consuelo Castillo of Round Rock (pictured). Castillo, who has an intellectual disability, has a son and wants to take classes at Austin Community College so she can work in an office.

"I know we're a little bit slow and we have a disability," she said. "But you know, to us, we don't have labels. We're just human beings."

Advocates have also pressed the issue with the media, encouraging reporters to avoid labels such as "the disabled" and "the mentally retarded." Last year, The Associated Press replaced "mentally retarded" in its stylebook with "mentally disabled," a change the Austin American-Statesman recently adopted.

The Austin Travis County Mental Health Mental Retardation Center, a quasi-governmental organization that was created in 1967 and provides services for people with mental disabilities, expects to unveil its new name by September. Officials expect that change, which would include business cards, stationery and legal expenses, to cost $13,000.

"I think words matter," said David Evans, the agency's executive director. "There are instinctual or guttural reactions to words. ... We want to get away from this 40-year-old name and catch back up with the language."

Political and social movements can be powerful tools in changing the language in casual conversation, said Sarah Wagner, a University of Texas graduate student working on her doctorate in linguistics. She said some people think that if they're not specifically talking about people with mental disabilities, it's OK to use the R-word and using more sensitive language is silly.

But words affect the way we see the world, Wagner said. And many people are willing to change their language when they see how it hurts others.

"I think a lot of the time it's education," she said. "People don't want to say things that hurt others and when they hear that it does, they actively work to change it."

Castillo, of Round Rock, is trying to speed up that process. She routinely speaks to state legislators and testifies before committees to help them understand issues facing people with mental disabilities.

"It feels good," she said. "You know why? Because they're listening to us."