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At Last! Another U.S. Agency Drops the Term “Mental Retardation”

At Last! Another U.S. Agency Drops the Term “Mental Retardation”

In a few days, my teenage son (who’s on the severe end of the autism spectrum) will be attending a day camp run by The Arc, an organization founded in 1950. When people ask me why it’s called “The Arc,” and learn that the name is an acronym for “Association of Retarded Citizens,” they’re aghast. “The r-word, that’s a bad word! They’ve got to change that!” they say.

Aware that terminology like “mental retardation” and “retarded” has become derogatory, the organization changed its name to just “The Arc” in 1992. Back when The Arc was founded, the term “retarded” was a sign of progress to parents of children with what we now call intellectual disabilities. Previously, their children had been termed “feeble-minded,” “idiots” or “cretins.”

The U.S. Social Security Administration — an agency that plays a key role in the lives of many with disabilities — is finally catching up to the times and dropping used of “mental retardation” in favor of “intellectual disability.” The latter term was adopted some time ago by, among others, the World Health Organization’s (WHO) International Classification of Diseases, the U.S. Department of Education and the fifth edition of theDiagnostic and Statistical Manual of Mental Disorders.

Change in Terminology Won’t Mean a Change in Public Support

Three years ago, President Barack Obama signed Rosa’s Law, which officially replaced the term “mental retardation” with “intellectual disability” in federal health, education and labor policy. Acknowledging the “widespread adoption” of the term “intellectual disability,” Social Security will now change the terminology in all of its Listing of Impairments and other agency rules, with no effect on how claims for those with developmental disabilities are evaluated.

The change is just a matter of words, some might say. After submitting a proposal about the terminology change back in January, Social Security received 76 comments. Some raised concerns that “intellectual disability,” like previous phrases, could itself become outdated and that using “intellectual disability” may “make people feel good” but “the new term is not as descriptive as the current terminology.” Others feared that the change could mean a loss of services and public support.

While acknowledging these concerns — as a parent, I can more than understand fears of a loss of services! — Social Security officials note that 71 commenters were in favor of the change:

Advocates for individuals with intellectual disability have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it.

The CEO of The ARC, Peter Berns, points out that “changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Language Matters, But So Does What an Organization Does

“Retarded” may originally have been applied to individuals with intellectual disabilities to explain that they developed various cognitive and other skills at a slower rate then most. Over time, “retarded” has been popularly used in a highly pejorative manner. While the term “disability” is not embraced by everyone, many find the term acceptable when used in “people-first language,” which puts “the word ‘person’ or ‘people’ before the word ‘disability’ or the name of a disability, rather than placing the disability first and using it as an adjective.”

The end the use of the r-word has been well-publicized. We still need this campaign: I still see and hear the r-word, especially among teenagers (i.e., the very targets of the campaign). Nonetheless, while continuing to point out how hurtful this word is, we should still be careful not to get overly caught up in censuring organizations and agencies that still use the term or others such as “handicap.” Some of these organizations still used such terms precisely because they have been around for awhile.

That history and experience addressing the needs of individuals with disabilities means a lot. In New Jersey, The Arc runs a number of summer day camps that are the only option for my son Charlie (due to his intellectual disabilities and behavioral challenges) once summer school ends. Based on the kids we see crowding around the pool and the volleyball court, most are from minority families; more than a few are also from low-income families. The camp only runs to mid-August, in part because they can’t get enough staff — a campaign I and more than a few other families would put a lot behind would be to have a little more funding for the camp to stay open till the end of summer!

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108 comments

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9:10AM PST on Nov 20, 2013

I think the author makes the point I would like to make at the very begining - the word retarded was progressive and now it is a slur. It will only be a matter of time before ID (Intellectually disabled) will become a slur. I've read all the posts here and I see nothing even theoretical to disagree with my assertions about the future. Frankly, this is a tempest in a teapot. What is much more important is the funding and services. But discussing labels is far cheaper as in it doesn't cost anything. So for the people shouting from the rafters that we need a label change, if it makes you feel better have at it. I don't think it changes anything.

4:03AM PDT on Aug 13, 2013

Care needs to be taken over terminology in this sort of situation - carelessness can cause pain, hurt and offence, and raise limits in other people's minds over what those involved can achieve that aren't necessarily accurate!

2:27AM PDT on Aug 13, 2013

ty

9:14AM PDT on Aug 12, 2013

Perhaps using the term: Mentally Challenged, not offensive & more polite.

5:47PM PDT on Aug 11, 2013

great

5:09PM PDT on Aug 11, 2013

The word is disabled. That's what we should use to describe anyone with intellectual OR physical disabilities. "Retard" is from "Mental Retardation" - it is specific to those with intellectual disabilities but not physical.

Do you have any idea how many people with physical diseases are bullied and called "retard" if their physical disease causes deformity? I have known at least two children to whom this happened. One had surgery to remove a tumor on her tongue, which slurred her speech, then a second surgery to remove a tumor on her eyelid and eye, which left that eye permanently half-closed and a different colour from scarring. Other than that she was a *normal, intelligent* ( meaning *not* intellectually disabled) little girl. So why was she called that? Because she looked different. Looked different. The same reason that can be given when a white person calls a black person a name. They look different.

Outside the medical community, "retard" is a slur. We are not all speaking in medical terms when we say "retard". So cut it out. It's about time. The word is disabled. Now, if some 50 year old male construction worker isn't being careful and gets injured on the job so that he has to collect "disability" because he's disabled - he has the same affliction as someone with downse syndrome, or cerebral palsy, for example. Those who have physical disabilities are *not* better or "more normal" than those who have intellectual disabilities *and* disabilities due to "poor men

9:06PM PDT on Aug 10, 2013

Interesting conversation. Wish I had more time. Will look in tomorrow...

7:55PM PDT on Aug 10, 2013

This is a lesson on how the government works. Three years after President Obama signed it into law, the SSA finally changes the wording. Interesting. Thank you.

1:35AM PDT on Aug 10, 2013

Geee - this got cut off:

My hubby had to take once medication called "XYZ retard" - meaning its effect was slowly released over 24 hrs. We should name that what ... "xyz intellectually disabled"???

Coming up with new names or stringing word together doesn't make us change our attitudes - education does. It's ALWAYS what WE make out of it.

1:32AM PDT on Aug 10, 2013

Hi Dylan - I think Jessica doesn't deserve your accusations; she explained herself quite well if one reads her postings carefully.

I agree with the part of your sentence where you say that "...we care about how our words and our actions impact ..." - after Jessica explained in details the effects of AS how do you think your words make her feel? She sure DOESN'T use the words in a derogatory or insulting manner!

We should not forget - and this is very much in line with what you're saying, Dylan - the origins of all these words which are viewed today as NO-NO thanks to our ACTIONS and USE in daily life.

Imbecille (imbecillus in Latin) as well as cretin, idiot, retard, mongoloid et al were all used in the medical field to describe a very specific state of a person. There was nothing wrong with that until the human being couldn't help it and make something else out of it.

Not too long into the future this newly created term "intellectual disability" will become a slur word too - and then? Do we really have to re-invent yet another term? Wouldn't it be much better and sustainable if we would change our attitude? I think so ...

Correctly - "retarded" means nothing else than to do something slow or have a delay in development, that someone is slower than average, etc. Nothing bad or derogatory if one accepts that we're individuals with individual characteristics.

My hubby had to take once medication called "XYZ retard" - meaning its effect was slowly released over

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