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Words Describing Special Olympians Raise Arguments Even Among Advocates For The Disabled
Editor's Note: Editor's Note: The following article is re-printed from Anchorage Daily News, February 25, 2001.
Mike is disabled.
Mike has a disability.
What's the difference? Plenty, if you're Mike. Having a disability is one aspect of Mike's life. "Disabled" is a label that makes it sound as if that's all you need to know about Mike.
The distinction is made in a set of language guidelines distributed to journalists who will cover the 2001 Special Olympics World Winter Games, which open in Anchorage on March 4. The guidelines, specifying "Appropriate Terminology" and "Terminology to Avoid," also are being used to train the event's volunteers.
Some of the points:
- A person "has" mental retardation rather than "is suffering from," "is afflicted with" or "is a victim of" mental retardation. - Use "people with mental retardation" rather than "mentally retarded people" or "the mentally retarded." - Do not use "unfortunate" to describe persons with mental retardation. - A person is "physically challenged" or "disabled" rather than "crippled."
The guidelines were created by the international office of Special Olympics Inc., said Nance Larsen, director of public relations in Alaska for the organization.
"Most people find (them) helpful," Larsen said. "They don't want to use the wrong words." The concept of language guidelines came about in the mid-1980s, said Dave Lenox of Special Olympics in Washington, D.C. It's his job to represent the wishes of athletes within the organization. He said the guidelines are based on conversations with people with disabilities as well as their families and the agencies that serve them. They emphasize the person, not the disability, he said, a practice called "people-first language."
Such language has been around for more than a decade, promoted by an international group of the same name. Locally, People First has about 25 members.
But not everyone agrees with the guidelines, said People First's local president, Joe Pichler. Pichler was a contestant in the first Special Winter Olympics in 1977 and has won a gold medal in skiing. In his view, Special Olympics don't go far enough. He is lobbying against use of the word "retarded." Really," he said, "athletes don't want to be called that." Pichler's objection goes to the heart of what some believe is one of the last great civil-rights movements in America. How we as a society talk about people with disabilities is a powerful aspect of that battle.
As a volunteer for the upcoming World Winter Games figure skating competition, Judy Waldron cringed every time her orientation trainer said "retarded." It's a term she considers archaic. Waldron, a member of the Alaska chapter of the Down Syndrome Congress and mother of a girl with Down syndrome, prefers the term "developmentally delayed" and has drafted a letter to Alaska physicians stating how people with Down syndrome wish to be addressed. On the other hand, Waldron called politically correct language sometimes needlessly confusing. Others agreed.
"Mental retardation is a perfectly valid name describing a mental condition," said Corbett Mothe, administrator of public relations for Hope Community Resources, a service provider for people with disabilities. "But over the years, it has been stereotyped and used in derogatory fashions. I oftentimes hear young and older people say, 'That's retarded.' "
The phrase "developmentally disabled" preempts the stereotype, although when Mothe first heard the usage, it didn't exactly roll off the tongue, he said. As he began to use the phrase, however, he found it came easily in conversation. I guess that is what change is all about: habit, repetition," he said. Mothe, who has worked for Hope since 1973, said he would not use the term "intellectually challenged," which some people prefer. To him, that is more negative than positive. Within Special Olympics, use of "retardation" is in debate, said Lenox, a member of the Consortium for Language, Image and Public Education, which has tackled the issue. In Australia, mental retardation is referred to as "intellectually disabled." In Ireland, a person has "learning disabilities." In some pockets within the United States, people are "cognitively impaired."
Lenox once ignited flame-retardant material during a speech about mental retardation. His point: This material is slow to ignite but not impossible to ignite. That's what "retardation" means, he said. It means slower. "Developmentally delayed" is not the same thing, he argued, since that could address a range of disabilities.
Another difficulty has to do with governmental language. "Mental retardation" is a clinical term used in the distribution of benefits, including Medicaid. If the diagnosis were changed, the benefits could be withdrawn.
In our effort to be more politically correct, we'd have people out on the street," said Lenox. And yet, to someone who has mental retardation, the word "retarded" can be piercing. "It's a struggle," Lenox added. "No one knows what to do." There are currently two solutions, he said: In casual usage, let the person with the disability dictate how he or she should be addressed.
Build an information campaign around the diagnosis "mentally retarded" to let people know what it really means. In other words, reclaim the term, as women have done with "girl" and homosexuals have done with "gay." "The answer is to take away the sting," said Lenox. "To say, yep, that's who I am."
In Lenox's experience, language guidelines most often draw a backlash from within agencies that serve people with disabilities.
One comment he periodically hears: "Oh, is that the term this week?" "I say, 'Yeah, it is,' " Lenox said. "And it may change again, but the reality is, if it changes, it's because we learn something or we listen." More agencies are deferring to the populations they're talking about when it comes to language, he said. That's changed from a decade ago, but in some cases it opens a Pandora's box. For some, the name "Special Olympics" itself is offensive. "That's separatist language," charged Duane French, director of the Alaska Division of Vocational Rehabilitation.
When French sat on the board of Very Special Arts America a few years ago, he choked on the name each time he said it. "Special" is one of those code words, he said. He and others took to calling the organization's director, John Kemp, "very special John."
The disability movement is an evolution of thought and enlightenment, said David Maltman, developmental disability program administrator for the Alaska Department of Health and Social Services. Using language to change prejudice is nothing new, he said. That's one way marginalized groups gain their civil standing. If some people are just now hearing about people-first language, he said, that's a sign of change.
In 1993, Maltman authored an awareness guide for the Governor's Council on Disabilities and Special Education. One purpose was to make people think about how we talk about people with disabilities. Ever heard or used the phrase "confined to a wheelchair"? "Generally speaking," Maltman writes, "wheelchairs prevent people from being confined. Though you may spend a lot of time in your car and use it to get around, you probably wouldn't refer to yourself as automobile-bound."
Maltman's guide includes etiquette:
Don't be embarrassed if you happen to use words that seem to relate to a disability: "See you soon," "Walk this way" or "We better run along" are expressions everyone uses.
Don't pretend you understood something you didn't. It is not impolite to ask people with difficult-to-understand speech to repeat themselves.
Maltman acknowledged that some people may find people-first language awkward.
"You can trivialize political correctness. However, if we are to live in a community, certainly respect for each other is important, and this just helps people understand the difference between us and how to live with those differences," he said. The way we talk about people with disabilities is just as important as how we treat those people, advocates say.
"You are using language that will uphold the dignity and value of people in our society," said Max Mercer, clinical consultant with Assets, a nonprofit service organization. "The way we speak shapes the way we think, even if we're not aware of it."
Beverly Tallman, associate director for the Center for Human Development, a training organization, has a simple suggestion for talking about people with disabilities, especially during the upcoming World Winter Games. "When you meet, ask them, 'How do you want to be described if I talk to somebody about you?' Ask them, because they'll tell you."
In the Games, competition has to be the focus, French said. If opportunities to educate people arise, that would be great, too. In that regard, the most critical word -- "acceptance" -- probably doesn't appear in the Special Olympics guidelines.
"If we can do that," he said, "then all of the right words will follow."
Reporter Sandi Gerjevic can be reached at firstname.lastname@example.org.