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Mentally disabled 'self-advocates' oppose use of word 'retarded'

Leadership opportunities have come slowly to people with intellectual disabilities. But for a new generation, removing the word "retarded" out of all medical and legal lexicon has turned them into confident "self- advocates."

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By Michael Alison Chandler
Washington Post Staff Writer
Friday, February 5, 2010

A national movement to purge the word "retarded" from lawbooks and medical terminology is nearing success, gaining support this week from White House Chief of Staff Rahm Emanuel, who apologized to advocates for the disabled for using the term during a private meeting last summer.

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The campaign is led in part by the mentally disabled themselves, who are increasingly politically organized and eager to escape the stigma associated with the term.

"It's a time of change," said Jill Eglé, co-executive director of the Arc of Northern Virginia, a support group for the disabled, who spearheaded a campaign to change the state code in Virginia.

The words "retarded" and "retard" feel threatening, she said. Eglé identifies herself this way: "I am a powerful leader with an intellectual disability."

In Maryland, lawmakers voted last year to replace the term "mental retardation" throughout much of the legal code, and in the District and 48 states, including Virginia, elected officials have acted to remove the words from the names of human services agencies. Legislation has been introduced in Congress that would replace the words in all federal education, health and labor laws.

The 2010 professional manual that psychologists use for diagnosis makes the change in the medical label official: "Mental retardation" is out. "Intellectual disability" is in.

The change came after a decade of debate among social workers, psychologists and educators, and it was voted down once by those concerned that a new term would create confusion and cause some people to lose legal benefits. "It was continued impassioned pleas from self-advocates that made this happen," said Joanna Pierson, president of the American Association on Intellectual and Developmental Disabilities, formerly the American Association of Mental Retardation.

The shift in language casts the word "retarded" into a bin with more than a century's worth of discarded medical terms for the mentally disabled, including "idiot," "moron" and "feebleminded." The terminology provides an important function by connecting people to services such as special education and job assistance.

"A challenge in our field historically has been that whatever medical term we have used, a significant portion of the public uses it in a derogatory fashion," said Paul Marchand, staff director of disability policy collaboration for the Arc of the United States, which changed its name in 1992 from the Association of Retarded Citizens.

Some advocates say the long campaign to change the terminology has been a waste of time, because the lexicon of insults is likely to expand to include any new terms and because it has distracted from more pressing needs, such as employment assistance.

Growing clout

But for a new generation of people with intellectual disabilities, who are better educated and better organized, changing the language is the top priority. And their recent legislative successes signal their effectiveness as a political force.

Leadership opportunities have come slowly to people with intellectual disabilities. Campaigns against forced sterilization, institutionalization and exclusion from public schools have been led by family members or the professionals who work with the disabled.


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