Today's post is from Maggie Kast, whose story "Joyful Noise," appears in the anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs, edited by Suzanne Kamata. Kast is also the author of and The Crack between the Worlds: a Dancer's Memoir of Loss, Faith and Family (Wipf and Stock, 2009). Her essay, "No Pity," appears in the anthology Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, edited by Kyra Anderson and Vicki Forman (Woodbine House, 2010).
Rahm Emanuel's recent use of the "r" word to castigate conservative Democrats has created a flurry of comment about the word, both as slang for incompetent and as derogatory term for people with developmental disabilities. Sarah Palin demanded he be fired, and Rush Limbaugh called Rahm's meeting with advocates for the mentally handicapped a "retard summit at the White House." Questioned about Rush's rant, Palin called his use of the word, "crude and demeaning," although she later excused it as "satire."
This current publicity merely highlights a longstanding problem and efforts to solve it. In March, 2009, the Special Olympics held a youth summit, and this group of young people conceived and launched a campaign to "Spread the Word to End the Word," designed to eliminate "retard" both as epithet and descriptor. Several governors have endorsed this campaign and forty-eight states have replaced "mental retardation" with "developmental disability" or a related term in their laws and departmental designations. A bill known as "Rosa's law," currently before Congress, would change the term "mentally retarded" to "intellectual disability" in several federal statutes.
As the parent of a child who failed to sit up, walk or talk when expected, I faced the question of what to call his condition. Never fond of euphemisms, I still dreaded the harsh sound and still harsher meaning of the "r" word and yearned to call my son anything else. At the same time, I wanted to say the word before it was said to me. More than anything, I hoped my son would never hear it, would never know this cruel fact about himself. One night in the '70s, as I listened to reports of Nixon's wrongdoing on the radio, my son propped on his hands on the kitchen floor, and repeated to myself: "retarded, retarded," coming down lightly on the "r's" and the "e" and clipping the "t" and the "d's," trying to improve the sound of the word and get myself used to it. Accepting the term was part of my facing difficult facts, and my regret was matched by
fierce joy that my son would never be capable of serious evil.
Now times have changed. I no longer use the word at all in public, and I have never used the word as slang. I support the campaign the end the word. As Liane Kupferberg Carter's passionate essay makes clear, "The R word is as offensive to persons with intellectual disabilities as the N word is to the African American community." Four Facebook groups support her effort, which now amounts to a landslide. Sixty thousand people have signed the promise to avoid the word.
A more complex and nuanced point of view on the history and effect of making words taboo can be found in an essay by law professor, Christopher M. Fairman, "The Case Against Banning the Word, 'retard'." Fairman worries about censorship and restrictions on free speech, pointing out that originally "retarded," (which literally means "delayed"), replaced the less respectful "idiot" or "moron." Like sex, he says, mental disorders carry cultural taboos, and whatever word we use will probably acquire the old stigma. While I agree with his reluctance to outlaw taboo words, I don't think the campaign to decrease the use of a cruel epithet equals a legal threat to free speech. Surely we can find another verbal assault, just as strong, to hurl at our political enemies.
My son died of an intestinal tumor following a hundred days of hospitalization and ineffectual treatment. When his doctor said to me, "You know, you're his advocate . . . if it weren't for you. . ." and failed to finish the sentence, I knew it meant my son was disabled, incurable and finally colonized by a hospital infection—three times taboo. It if weren't for me, they would give up on him. It had nothing to do with a word, and no euphemism could have saved him.
The best memorial I can think of for my son would be for his cohort to find or reclaim a word for themselves, a word that would signal a positive group identity. Consider the history of "queer," once a term of disparagement, then a rallying cry (We're here, we're queer, get used to it!), and now a branch of academia and theory (queer studies, queer theory). Or look at the evolution from "deaf," a handicap, to "Deaf" and Deaf culture, a unique way of experiencing life. Even the "n" word has shifted, though it's still poisonous if white people use it. But in gangsta rap, like NWA and others, and comedy, like Dave Chappelle and others, the word has become a part of positive identity. I don't know if the "r" word can ever be transformed into a badge of pride, and I doubt the ten-syllable "developmental disability" will ever be the basis for a rallying cry, but other words are emerging and will emerge. "Autism spectrum" has already gained wide currency. Sooner or later the young self-advocates who conceived "Spread the Word to End the Word" will find their own good word to spread. They're here, and they'll make sure that we get used to it.