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 the Diagnostic 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 Some raised concerns that “intellectual disability,” like previous phrases, could itself become outdated and that using “intellectual disability” may “make people feel good” but “the new term is not as descriptive as the current terminology.”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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