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

By Michael Alison Chandler
Washington Post Staff Writer
Friday, February 5, 2010; B01

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.

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.

The nature of the disability, which historically has been diagnosed in people with IQ test scores below 70 or 75, makes it harder to give speeches or debate issues. But an increasing number of people with intellectual disabilities are taking the microphone and setting up picket lines to stand up for themselves, following the examples set by African Americans, women and other groups.

On Martin Luther King Jr. Day in Richmond, a 27-year-old man with Down syndrome addressed a crowd of Virginians with intellectual disabilities who had come to lobby their legislators for funding.

"The man we honor today reminded us that the dream of this great nation was not yet fulfilled for all its citizens. . . . He reminded us that America made a promise that all men would be guaranteed the right to life, liberty and the pursuit of happiness," John Franklin Stephens said to shouts and applause. "Virginia, we have promises to keep and miles to go before we sleep."

Stephens, an aspiring screenwriter from Fairfax County, wrote the speech with help from his father, and he practiced it many times. To become politically active, many with intellectual disabilities need support from a non-disabled mentor who can explain issues and help strategize. The number of organizations dedicated to training "self-advocates" has more than doubled in the past decade, to about 2,000, according to estimates by the Research and Training Center on Community Living at the University of Minnesota.

As institutions close and the disabled are increasingly included in regular schools, people with intellectual disabilities are becoming increasingly articulate, self-confident and ambitious. Some are attending adapted college programs. Eglé is among a relative few who are pursuing professional careers with support from mentors and are not relegated to low-end jobs. Many self-advocates are being invited to sit on commissions or nonprofit boards or to intern in state legislatures.

"Fifteen or 20 years ago, we were directing their lives," said Mary Lou Meccariello, executive director of the Arc of the District of Columbia. "Now they are directing their own lives."

In Maryland, self-advocates were instrumental in getting the state to close the Rosewood Center, a century-old institution in Owings Mills, last summer. In Minnesota, they waged a campaign to identify and mark thousands of gravestones outside institutions.

Nationally, they have helped escalate protests against R-word references in popular culture and by public figures, joining the outcry over "Tropic Thunder," a 2008 movie laced with "retard" punch lines, and over Emanuel's recently reported reference to liberals as retarded.

Local victories

People First in Northern Virginia, a self-advocate group, initiated the campaign to rid the state code of "retarded" in 2007. A bill that would have purged the word from state laws did not pass in 2008, largely because of concerns in the General Assembly that the changes would jeopardize federal funding for people with "mental retardation." But last year, lawmakers advanced the cause by renaming the Department of Mental Health, Mental Retardation and Substance Abuse Services to Department of Behavioral Health and Developmental Services. The Board of Education also approved changes to the language used in public schools.

During a People First meeting in Fairfax last month, members met with a facilitator from Toastmasters, a public speaking and leadership training program. They focused on making eye contact and keeping "umms" and "ahhs" in check during a series of impassioned speeches about the R-word.

"They need to completely erase it out of the ledger and the government books. If I find the R-word in a government document, I would just burn it until there was nothing left. That is how strongly I feel about it," said Robbie Kelly, 35, of Dumfries.

In many places, including Maryland, the change in terminology has been approved quickly. Nina Marcellino, an Anne Arundel County mother whose 7-year-old daughter, Rosa, has Down syndrome, was inspired by the campaign in Virginia and urged a Maryland legislator in 2008 to sponsor a bill. Less than a year later, it passed unanimously, and the term is being removed from education and health codes.

Self-advocates were among the most vocal supporters, Marcellino said. Some wept when it passed.

"It was a change whose time had come," she said.

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