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"MR" Stir of Words |
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'Mentally retarded' stirs war of words
By Stacey Burling To thousands of people, mentally and retarded are fighting words. For years, people who are mentally retarded, their families, and professionals who work with them have been wrangling over what to call people with IQs below 70. Advocates for change argue that the word retarded - or more often retard - is now a school-yard taunt, a word too hurtful to be applied to people who want and deserve respect. "That's my pet peeve in life," said Roseann Mosakowski, a Pottsgrove woman whose 15-year-old son suffered a brain injury as an infant and now falls into the category. "I hate those words. I hate them with a passion." On the other side are people who contend that mentally retarded has a more precise meaning than the alternatives and is used in laws and funding regulations. Why add confusion, they ask, when many people still don't know the difference between mental retardation and mental illness? Plus, they say, any new word will soon become stigmatized, too. All this energy would be better spent trying to improve the image of people with mental retardation. The debate has become especially intense recently. The Arc of the United States - once the Association for Retarded Children and then the Association for Retarded Citizens - recently removed the words mentally retarded from its mission statement. This year, Arc-Allegheny, parent corporation of The Arc of Greater Pittsburgh, got the more "positive" name Achieva and has purged all reference to mental retardation from written materials. It uses "cognitive disabilities" instead. The 7,500 members of the influential American Association on Mental Retardation, which represents professionals, will vote next month on whether to change the organization's name to the American Association on Intellectual Disabilities. The group, which writes the official definition of mental retardation, has decided to retain that term for professional use because it is used in so many government regulations and laws. Steve Warren, a developmental psychologist at the University of Kansas and former president of AAMR, supports the name change and thinks it will be adopted, if only because people are tired of arguing. "I think many members of the organization would just like to get past this," he said. But Richard Garnett, a Fort Worth, Texas, psychologist and parent of a mentally retarded child, thinks the new name is likely to become problematic. "The problem is,... in 10 years, we're going to be doing this all over again," he said. Steven Eidelman, Arc's executive director, said his organization just spent three years examining and reorganizing itself. What to do with mental retardation, he said, "was the two-ton elephant in the middle of the room." The group now tries to avoid the term, using "our constituents" and "people" whenever possible. Eidelman thinks the war of words is "irreconcilable." He has a bet with an AAMR leader that the debate will be "resolved five years after hell freezes over." Terms such as cognitive impairment or disability, developmental disability, mentally challenged, mental disability, even intellectual developmental disability, all have their supporters. AAMR chose "intellectual disabilities" because the phrasing is gaining popularity outside the United States, but its precise meaning is "still up for grabs," said Doreen Croser, executive director. To the uninitiated, this was already a linguistic minefield. Mentally retarded activists are called "self-advocates." To minimize offense, one says that someone has a disability, not that they are disabled. The help they get from the government is called supports, not services. And this field's history is littered with discarded words. There was a time when the words idiot, moron and imbecile - all terms of derision now - were used by professionals to classify people whose brains functioned poorly. AAMR has already had three names. It was founded in 1876 as the American Association of Medical Officers of Institutions for Idiotic and Feebleminded Persons. In 1933, it became the American Association on Mental Deficiency and took its current name in 1987. Many in the debate point out that stigma quickly attaches to new words. Special-education students soon became "speds." A friend told Eidelman about a boating trip he took with two teenage boys. When one fell in the water, the other joked: "You're so developmental." "In my view, in the broad scheme of life, what you call it isn't going to make a bit of difference," said Arlene Jarett, a longtime Montgomery County advocate whose 34-year-old son has Down syndrome. "It's how society views the people and what they do to support them." The push for a name change has come largely from self-advocates and younger parents. Many younger parents prefer to identify their children by the genetic syndrome that caused the mental retardation - such as Down or Fragile X syndrome - or by other conditions that often are associated with retardation, such as autism or cerebral palsy. In about 40 percent of cases, there's no identifiable cause for the child's problems. Ideally, self-advocates would like no label. They want to be known by their names. They say, "Just see me as a person. See my strengths. See my gifts," said Audrey Coccia, mother of an adult daughter with mental retardation and executive director of Visions for Equality, which monitors services for retarded people. Steve Dorsey, who has cerebral palsy and is active with Speaking for Ourselves, an organization for people with mental and physical disabilities, said his group preferred the term "mental disability." Garnett, who is active in both Arc and AAMR, says that, among professionals, mental retardation has a clear meaning. A term like "intellectual disabilities," he said, is much fuzzier. "I half-jokingly say, if the [AAMR] changes to the American Association on Intellectual Disability, we might as well call ourselves the American Association on People with Problems," Garnett said. Robert Beard, a linguist and professor emeritus from Bucknell University, said that changing terminology was unlikely to have much effect. "The problem is that the societal prejudice is not against the word. It's against the concept," he said. "The words that we use reflect our prejudice. They don't determine them. Changing the word is not going to change our minds." Warren thinks the argument stems from the impulse to treat people as fairly as possible and not lock them into roles. "I'd like to think it's a peculiarly American game," he said, "because we try idealistically to create the fairest playing field we can, and we try to honor people's wishes of how they want to be defined."
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