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

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A self-motivated campaign for change

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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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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