Joseph Shapiro, NPR
Nancy Ward, who works for a group of disability attorneys in Oklahoma City, says that she should be defined by so much more than her IQ.
A Self-Advocate Takes on the Nebraska Legislature
In a recent speech, Nancy Ward talks about her first venture into political advocacy for other people with mental retardation. In the 1980s, with a group called People First of Nebraska, she succeeded in getting state lawmakers to get rid of outdated terms that were being used in state law to describe people with mental retardation. Since then, Ward has served on many state, federal and professional boards.
Joseph Shapiro, NPR
Lucius Mangrum, a member of a self-advocacy group, says it is just as important to change attitudes about mental disabilities as it is to change the labels.
Minority groups often object to, and then change, the words that are used to describe them. That's been true, too, for people with mental retardation. In the past, they've been called by some ugly words: idiot, moron, feeble-minded. And those were official and legal definitions.
The term mental retardation was supposed to be an improvement. But the fight over language keeps going on. That becomes clear if you ask those with mental retardation what they think about that description.
"I hate that word — mental retardation," says Thelma Greene of Washington, D.C. "I wish they would change that one, because it sounds so institutional, like you can't do nothing for yourself and you're depending on somebody else to do everything, from putting on all your clothes down to your shoes. And that's not right."
"Retardation is not the good word," Anthony Vessels, also of Washington, says in agreement.
"I never did like that word 'retardation' or 'mental retardation,' adds Victor Robinson. "Because everyone has called people names about that. And no, none of my friends did like that name or any other name, being called 'stupid, dumb.' And it hurts a person very much."
Sometimes it helps to have the label of mental retardation. It is a diagnosis that leads to services, such as special education, job support and housing.
But it is also commonplace to hear the term, especially its abbreviations, "retarded" or "retard," used as an insult in schools, movies and music.
"Some people who are kind of nasty, they would make fun of you and play at, you know with you and make you look like if you are a stupid person," says Robinson. "But a person who has a disability is not that. They are very wise on some things, and they can be very knowledgeable about some things."
Nancy Ward, who has mental retardation, works for a group of disability attorneys in Oklahoma City. She says there's a lot more to her than that label. She says her work and her hobbies define her, not her IQ.
The definition of who has mental retardation iosn't precise; it's not like determing a person's blood type. Officially, anyone with an IQ of 70 or under is considered to have mental retardation. A generation ago, the official definition applied to IQs under 85. And other things are measured, including how well a person functions in the world.
There have long been attempts to replace the term "mental retardation" with something more friendly. But Ward hasn't liked most of them.
The term "mentally challenged"? "I think it's just another label," she says, "Because what does that mean? How does that define us? It doesn't define us."
Nor does she like the term "special."
"I don't want to be treated any different than anybody else," she says. "I want to have, you know, the same consequences for my actions that somebody else would have."
Ward adds that there are people who can't understand actions and consequences.
"If somebody didn't understand that, then I don't think it's fair for them to have consequences," she says. "But I would understand stuff."
Most people with mental retardation, such as Ward, have mild mental retardation. Many push for change. They serve on various boards, including those for government agencies and for organizations of the professionals who work with people with mental retardation.
On Jan. 1, 2007, the nation's oldest group in the field, The American Association on Mental Retardation, took on a new name: The American Association on Intellectual and Developmental Disabilities.
Hank Bersani Jr., the group's president, said the name change showed that the professionals in the organization were listening to the concerns of the people they serve. But he notes that it was easier to agree to dump the term "mental retardation" from the group's name than to reach a consensus on the best replacement.
At a recent national convention of TASH (formerly The Association of the Severely Handicapped), a group of people with developmental disabilities gathered to discuss the language used to describe them. They applauded the American Association on Intellectual and Developmental Disabilities for taking "mental retardation" out of its name. But they weren't so sure about the new term, "intellectual disability."
"When you talk about intellectual disabilities, that make you sound like you're dumb," says Lucius Mangrum Jr., a member of the Washington, D.C.-based self-advocacy group Project ACTION!.
Bersani, who is also a professor of special education at Western Oregon University, says he is not surprised that there's less consensus about replacing mental retardation with intellectual disability.
"Right, they said they don't like that either," he said, when told of the response by the group at the convention. "And so then I say to them, 'Well, what would you like to be called?' And they usually say their first name: 'I'd like to be called Liz.' 'I'd like to be called Rafael.' And that's what's really important. One of the things that they are telling us, in their own way, is that we spend too much time thinking about them by their diagnosis."
But the term mental retardation isn't going away - not yet. Even though Bersani's group has changed its own name, the legal name of the disability is still mental retardation.
Lucius Mangrum says it's going to take more than a word change to make a real difference in his life.
"Changing the word could possibly make it better," he says. "But also you got to change the attitudes. You know, because the attitudes is not changed, the word is not really going to matter. I don't look down on myself. I don't think anybody's better than me or less than me. You see, but others, they do see themselves as being better."