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What's in a name? Legislation would end use of the term 'mental retardation'

November 19, 2009 | 11:19 am

We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.

The proposed measure would replace those terms with "intellectual disability" and "individual with an intellectual disability."

The Arc of the United States — the nation's largest and most active advocacy group for those with intellectual and related developmental disabilities — calls the terms "mental retardation" and "mentally retarded" "outdated" and "stigmatizing." The group applauds the measure, which was proposed by Sen. Barbara A. Mikulski (D-Md.), and says it's high time that federal language was updated.

" 'Retard,' 'retarded' and 'retardation,' once accepted medical terms, are now used only to insult and demean people," said Peter V. Berns, chief executive of the Arc, in a statement supporting Mikulski's proposal. He added, "Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil rights."

The Centers for Disease Control and Prevention already use the updated term, as does the Office of the President — to which the Committee for People With Intellectual Disabilities reports. But some landmark laws — including the Individuals With Disabilities Education Act (IDEA), the Higher Education Act and the law known as No Child Left Behind — still use the terms.

The measure replicates a law recently passed by the Maryland State Assembly. As they deliberated, state lawmakers heard from 13-year-old Nick Marcellino, whose sister, Rosa, has an intellectual disability. "Some say we shouldn't worry about the words, just the way we treat people. But when you think about it, what you call people is how we treat them. If we change the words, maybe it'll be the start of a new attitude toward people with intellectual disabilities."

Mikulski has dubbed her measure Rosa's Law, in honor of Nick's sister.

There are 7 million people living with intellectual and/or developmental disabilities in the United States, and the origins of their disabilities are legion, ranging from birth injury, illness, genetic defect (a term that some may also challenge) and environmental factors. A recent post here at Booster Shots talked about a raft of medications now under study in the treatment of Down syndrome and about a survey that found that 60% of parents of offspring with the disorder would likely take a pass on such a treatment if it became available.

So, is it political correctness run amok, or is it a group's right of self-determination to stipulate (by law, no less) how they should be referred to? There are plenty of precedents to point to. But some will resist being dictated to when it comes to language.

— Melissa Healy

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