Editor’s note: This piece is excerpted from the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome by Phoenix New Times managing editor Amy Silverman, published this spring by Woodbine House.
Editor’s note: This piece is excerpted from the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome by Phoenix New Times managing editor Amy Silverman, published this spring by Woodbine House.
By third grade, my daughter Sophie had become a bit of a tattletale.
“Someone used a really bad word at school today,” she told me one evening after dinner.
“The S word!”
“Really?” I said. I was sort of surprised my 8-year-old with Down syndrome knew the word shit. Then again, I had taken her to work with me at Phoenix New Times on occasion. I had to ask to be sure.
“What’s the S word, Sophie?”
“Oh, I can’t say.”
“C’mon. It’s okay. It’s just us.”
“Okay,” she said, looking around to make sure no one else heard, before stage-whispering her answer. “Stupid.”
Before I could think, I blurted out, “Did someone call you stupid?”
“No,” she said, looking surprised. It had nothing to do with her. She’d just overheard the word stupid.
“That’s not a nice word,” she told me.
“You’re right,” I replied. “It’s not.”
I hugged her tight, feeling proud of my sweet, sensitive kid — and also a little horrified.
Are we raising humanitarians or wusses? I asked myself silently, kissing the top of her head. Pretty soon, there won’t be any words left.
I was still mourning the loss of the word retarded. I don’t remember ever using the word as a pejorative in my life, but I know I must have, because years after I stopped (upon the occasion of Sophie’s diagnosis), I would still find it on the tip of my tongue, feel myself craving it like a cigarette. Retarded is rich, satisfying in its cruelty. It’s a word that gets its point across, perfect when you’re describing a particularly devastating move by an Arizona politician or that guy who just cut you off in traffic. Sometimes there’s no good substitute — and yet it’s gone.
Like a former cigarette user offended by secondhand smoke, I became the first with a dirty look or an admonition when I heard someone else use it. Hey, if I can’t say “retarded,” then neither can you.
And neither should you. As Sophie’s mom, there’s so much I can’t do to make the world more accepting — but I can make damn sure you quit using that fucking word.
I get it. I get that words hurt.
But stupid? That’s a tough one. Really, I can’t use it anymore? After that conversation with Sophie, I thought about it for days, caught myself every time I used the word, took note when others did. I started thinking about all the other euphemisms for stupid — dumb, idiot, moron, imbecile — and the more creative ones like mouth breather and drooler.
And then I felt sick. It’s commonly assumed that people with Down syndrome have above-average-sized tongues, because they often protrude from their mouths. The truth is that there’s nothing different about their tongues; but people with Down syndrome do tend to have smaller mouths, making it appear as though they have super-long tongues. They also can have breathing problems because all of their openings — including nasal passages — tend to be smaller than average. And because they have weaker immune systems, they tend to get more colds. That’s why you’ll often see a person with Down syndrome mouth breathing. Or drooling.
I ran across a list on Wikipedia of “disability-related terms with negative connotations”:
Blind, crazy, cretin, cripple, daft, deaf and dumb, deaf-mute, deformed, derp, differently abled, the disabled, disabled people, dumb, epileptic, feeble-minded, fit, freak, gimp, gimpy, handicapped, hare lip, hysterical, imbecile, incapacitated, idiot, invalid, lame, lunatic, looney, mad, maniac, mental, mentally deficient, mentally defective, mentally disabled, mentally deranged, mentally ill, midget, mongol, mongoloid, mongolism, moron, nuts, patient, psycho, psychotic, retarded, schizo, schizoid, schizophrenic, simpleton, slow, spastic, spaz, special, stupid, sperg, sufferer, tard, victim, whacko, wheelchair bound, Yuppie flu, zip.
That’s when I started using the word ridiculous a lot. I couldn’t think of anything else to say.
Of all the words used to describe people who are differently abled, retarded currently tops society’s list as most offensive.
That was not always the case. The word retarded has a slang-free history. For a long time, it simply meant slow.
According to the Oxford English Dictionary, it’s derived from the Italian word ritardato, and the first definition of the adjective version is “held back or in check; hindered, impeded; delayed, deferred.”
It’s traced to religion in 1636 (“he to his long retarded Wrath gives wings”); to medicine in 1785 (“Polypus, sometimes obstructs the vagina, and gives retarded labour”); and later to politics (“Arguably, the legacy of communism manifests itself most acutely in the retarded economic development of the east”).
It also means “characterized by deceleration or reduction in velocity,” as in a 1674 reference: “When it hath passed ye vertex ye motion changeth its nature, & turneth from an equably accelerated into an equably retarded motion.”
Actual references to retarded intelligence did not come until the turn of the 20th century.
Tim Shriver, head of the Special Olympics, ties that to the development of IQ tests, which he discussed in his 2013 speech in Phoenix.
IQ tests first became popular at the turn of the 20th century. And that led to a whole new toolbox full of terminology.
“The words we use in common language — imbecile, idiot, retard — these are medical terms developed around the turn of the last century to classify people with intellectual differences according to their IQ,” Shriver said.
“All of a sudden we get classifications, we get labels. They are quite horrible. And the labels lead to this idea that people are somehow lower and lower in the value chain ... and become more and more desirable to get rid of.”
As noted above, the terms idiot and imbecile are no longer formally used. But mental retardation remained an acceptable medical term until very recently. While I immediately struck the terms retard and retarded as slurs from my vocabulary, in my earlier work about Sophie I routinely used mentally retarded to describe her medical condition (which, as noted in Chapter 6, got awkward when for a time Sophie actually didn’t qualify as such).
When I first heard noise about officially switching the accepted term from mentally retarded to intellectually disabled or cognitively disabled, I balked. I thought the Arizona Legislature’s time and money could be better spent creating and funding programs for these often-neglected people, rather than debating what to call them. And I actually liked (and continue to like) the term mentally retarded. I think it does a better job than the others of describing what the situation is. In some ways, Sophie is slower than the rest of us in our house. I can live with that more easily than intellectually disabled — I don’t like either of those words.
Plus, I wondered, how long was it going to be before kids were calling each other “cog” on the playground? A friend pointed out that “cog” would actually be a compliment, so probably never. But you know what I mean.
As a parent of a kid with Down syndrome, I have naming issues aside from how Sophie’s IQ is addressed. How should we refer to a person with her genetic condition? J. Langdon Down, who “discovered” the genetic condition later named for him, came up with the term mongolism, because he believed the condition he’d identified was marked by features similar to those of the Mongol people, and because these people he was working with were slower mentally, he believed this to be a sign of racial regression. Gross, huh? And then the syndrome was officially named after him. This makes little sense to me. Why not name it after Jerome Lejeune, the man who put that theory to rest once and for all by discovering the third 21st chromosome? Or just call it trisomy 21?
And then there’s the whole “people first” thing.
In any case, the R-word train left the station without me. Before I could decide how I really felt about it, there were campaigns everywhere to get rid of it completely. It also departed without a man named Christopher Fairman.
Fairman, a professor at Ohio State’s law school, literally wrote the book on the word fuck. I was kind of in awe after I learned that. His book, Fuck, is a historical, political, and legal account of how the word became taboo — and why, in his view, it shouldn’t be.
He felt the same about the word retarded. His article on the topic was published in The Washington Post in February 2010, the month before Tim Shriver’s Special Olympics launched a special awareness day for its “Spread the Word to End the Word” campaign, and months before President Obama signed legislation officially removing the word from federal legalese. (Arizona followed suit in 2011, and by then many states had as well, although as of this writing, a few had not.)
Fairman asked if the word retard had only weeks to live, referring to the most recent controversy over the word.
Just a couple weeks before Fairman’s piece was published, Rahm Emanuel, then the White House chief of staff, had apologized to Tim Shriver and people with disabilities everywhere after the Wall Street Journal reported that Emanuel had called a group of liberals “fucking retards” at a private meeting held the previous summer.
The conservatives — usually the politically incorrect name callers — had a field day with this one. A democrat at the highest level of government dissing members of his own party with such language? Classic.
Things escalated, as Fairman explained, when former GOP vice presidential candidate Sarah Palin, who has a son with Down syndrome, “quickly took to Facebook to demand Emanuel’s firing, likening the offensiveness of the R-word to that of the N-word. [Rush] Limbaugh seized the low ground, saying he found nothing wrong with ‘calling a bunch of people who are retards, retards,’ and Palin rushed to his defense, saying Limbaugh had used the word satirically. Comedy Central’s Stephen Colbert took her up on it, calling Palin an ‘[expletive] retard’ and adding, with a smile: ‘You see? It’s satire!’”
Can you see how the word ridiculous just doesn’t begin to cover it?
“I sympathize with the effort,” Fairman continued, “but I won’t be making that pledge. It’s not that I’ve come to praise the word ‘retard’; I just don’t think we should bury it. If the history of offensive terms in America shows anything, it is that words themselves are not the culprit; the meaning we attach to them is, and such meanings change dramatically over time and across communities.”
He made a good case, mentioning how mental retardation was actually meant to supplant imbecile, moron, and idiot — in a good way. And he took issue with Palin’s comparison of retard to the word nigger.
“In some respects, the comparison seems overblown. The N-word invokes some of the foulest chapters in our nation’s history; ‘retard,’ however harsh, pales in comparison.”
And then he recounted a story in which a political staffer was forced to resign after using the term niggardly — an unfortunate choice of words, perhaps, but not technically an offensive choice. Niggardly means stingy or cheap and is supposedly derived from the Norwegian verb nigla. (The staffer was ultimately reinstated.)
Ultimately, Fairman argued, getting rid of the word retard won’t get rid of the sentiment behind it.
“If interest groups want to pour resources into cleaning up unintentional insults, more power to them; we surely would benefit from greater kindness to one another,” Fairman concluded. “But we must not let ‘retard’ go without a requiem. If the goal is to protect intellectually disabled individuals from put-downs and prejudice, it won’t succeed. New words of insult will replace old ones.”
Fairman also talked about efforts to reclaim words like nigger and gay. Could the same be done with retard? Good question.”
I wanted to ask him about it, but he passed away in the summer of 2015.
I found an expert close to home. Amy Shinabarger is a lecturer in the English department at Arizona State University and a socio-linguist. We met at a coffee shop in Tempe near ASU, and by the time I arrived, a little late, Shinabarger was settled into a worn leather couch. She has wavy, blonde hair and several striking tattoos, including a large purple looking-glass and several words I couldn’t quite make out; I tried not to stare.
The words seemed fitting for a socio-linguist, and I knew she was the real deal when Shinabarger raised her eyebrows when I told her Sophie’s name. She obviously knew that Sophie is the French version of Sophia, “wisdom” in Greek.
“Yeah, I know,” I said. “I actually asked my husband if he thought we should change it.”
Shinabarger majored in journalism as an undergraduate at ASU, but fell in love with an introductory linguistics class. She explained that a socio-linguist looks at how people use words. “It is humanities, but also social science and biological science,” she said, adding that she surprises her dentist on a regular basis. “I know anatomy really well.”
She explained that hers is a qualitative field, not quantitative, because if you ask people about their word usage, they tend to self-edit. It’s hard to study. Shinabarger is particularly interested in how people use words at home.
So, I asked, do words come back from the grave?
Yes, she said, they definitely have within the gay community.
“They’ll call each other faggots and ’mos and dykes,” she said. Shinabarger is not gay herself, but she has what she calls “protected ally status” — her friends say it’s okay for her to use the word queer. She did so sparingly, she said.
Then there’s the whole movement to reclaim the word cunt, she said.
I cringed visibly at that one. I think of myself as pretty open to language, and have the potty mouth to prove it, but there are a few words that have always stopped me short. Like cunt.
And I found, to my embarrassment, that as we moved into a discussion about the word retard, I have developed the habit of referring to it as the R-word.
“So uncool!” I taunted myself silently. “Not in front of the socio-linguist!”
New habits die hard.
Shinabarger echoed Fairman’s philosophy. She said that mentally retarded is a medical term, whereas nigger is not. That’s the word where she draws the line, she said, although she does have African American friends who use it.
Retard doesn’t bother her as much, she said, but admitted she’s not a big fan of it as a noun, or of its increasingly common abbreviation, tard.
“We don’t even need the ‘re’ — that’s how powerful the word has become,” she said.
We also discussed fucktard, a particularly nasty one, and a play on the word that some of her gluten-intolerant friends had adopted, glutard. Those friends asked her to call them glutards, Shinabarger said, shaking her head. She couldn’t.
We did pause for a moment to agree that it was a pretty accurate, descriptive word. Gluten does slow those people down.
Shinabarger wasn’t about to start calling people glutards and fucktards, but she didn’t want to ban the R-word, either.
“Any time a word is banned, something else steps in to take its place,” she said, adding that she often asked her students, “Do you want to have the power or do you want the word to have the power over you?”
Shinabarger made reference to a Lewis Carroll exchange between Humpty Dumpty and Alice:
“‘When I use a word,’ Humpty Dumpty said in rather a scornful tone, ‘it means just what I choose it to mean — neither more nor less.’
“‘The question is,’ said Alice, ‘whether you can make words mean so many different things.’
“‘The question is,’ said Humpty Dumpty, ‘which is to be master — that’s all.’”
I get that, I said. But what about Sophie? Could Sophie reclaim the word retard?
“I think it could be done.”
I sat for a minute, staring at my iced tea and then asked, “Why would you want to be called a retard?”
“But then why,” Shinabarger asked, “would somebody want to be called a bitch?”
So here’s the thing. I don’t want to be called a bitch. I’m not about to use the words nigger or cunt, and I’m happy to use the most acceptable current terminology for homosexual. If you’re gay, call yourself whatever you want.
Which raises what to me is the fundamental question. If you have an intellectual disability, do you have the ability to choose what you are called? The answer is complicated. Using words is hard enough. Reclaiming them is a real mindfuck. Will Sophie ultimately be capable of such nuanced reasoning? Maybe. I don’t know.
But I do know for sure that I’ve met plenty of people with intellectual disabilities — and so have you — who are most definitely not able to make that kind of choice. Some people can’t speak at all. What are we going to do, reclaim the word retard and paste it on their foreheads?
No, we are not. We — and not just we as their families, but we as a society — are charged with protecting them, with making decisions for them. And the truth is that while convincing people to stop using the R-word is not, in and of itself, going to create acceptance, Tim Shriver and the Special Olympics and a lot of other interest groups focused on people with intellectual disabilities have, at the same time, launched programs designed to educate the public about these people, to bring them out of the shadows and on to television, the runway, and the playing field, and that is what will have a lasting impact.
And these people who see these people with special needs, who want to do something to honor them, have an easy choice in one respect: They can choose to not use the word retarded.
Has this ended prejudice? No. But I can tell you (from a qualitative, not quantitative analysis) that in the months leading up to the writing of this chapter, I heard the word retard less and less. In fact, in eight months, the only time I can recall hearing it was out of the mouth of one of my co-workers.
No matter how hard we try, we won’t get rid of the word. And I’m not so sure we should. It is a part of our history and to deny it, to erase it, would be dangerous. I learned that lesson when Sophie’s fourth-grade class read the book Because of Winn-Dixie, a story about a young girl who moves to a new town and learns to adjust, published in 2000. The book is a classic, an award winner, and the word retarded appears in Chapter 13.
I absolutely adored Sophie’s fourth-grade teacher. Annabelle had Amy Wisehart first, and we found her to be strict but kind, a mom of boys who wrote thank-you notes on Olivia the Pig stationery and loved both my girls; she made sure Sophie was in her homeroom. I knew the kids were in good hands, but still, I was taken aback when I saw “the word.” I opened my laptop and wrote an e-mail:
“Tonight Sophie and I read Chapter 13 together — actually, I began by reading it aloud. I was glad I did because I noticed the word ‘retarded’ is used a couple times. I have real issues with that word, as you might imagine, but as a journalist by training I am also not at all in favor of censorship — particularly of books! (Although to be totally honest, I do ask people to consider not using the word ‘retarded’ when I hear it in public or see it on Facebook — which happens a lot) but I’m curious: How do you handle it when the word comes up in class, if it does, in the context of discussing the book? I don’t know if Sophie knows the word or if she’d ask about it; probably not. But I’m guessing some kids in 4th grade do.
“I hope that question isn’t too much — curious to hear what you think!”
She wrote back immediately, and for me, it will always be the best thing I’ve read about the R-word:
“As you know, now that we are entering the realm of big kid books and all of their glory, we will come across a few words that we would never utter and definitely find offensive. There will be many a discussion this year about words that authors feel they need to include, how the characters react, how we feel about them, and how they are treated in our society. Each year we encounter the “r-word” and I am kind of bummed that it is in Winn Dixie right off the bat … I am totally open to your suggestions … but here is how I have traditionally handled it. I talk about how words can change meaning throughout time based on how it’s used. I tell them about my parents’ friend Gay [that’s her first name] and my former coworker Linda Gay [it’s her last name] and how the word gay has gone from being a word that meant happy and was acceptable in names, literature, and daily use. In more recent years, some people use the word as a derogatory name and to pick on others. Then I talk about the r-word … in the book. I talk about flame-retardant pajamas and how retardant means to slow down to give them a round-about definition. Typically I avoid saying that it was a word used to describe people with a cognitive disability. I share that some people, kids and grownups, without seeming to find offense with it, call friends and others the R-word or say they are so r-ded. I talk about how this truly is a hateful word and is just as bad a word as they can imagine and that we need to tell people when we hear them say it that it’s not OK to say. I also tell them that if they hear anyone use it at school, it is a super bad word and they need to tell a teacher. (Side Note: Usually I don’t give a consequence the first time if they were not part of this conversation but use it as an opportunity to have this talk.)
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SHOW ME HOW
“That’s pretty much how I’ve discussed it in the past. Not too much opportunity for them to share because I don’t want them to tell me where they’ve heard it, that’s too sad.”
Too bad we didn’t all have Mrs. Wisehart for fourth grade.
For more information about the book, including upcoming readings and workshops in Phoenix and elsewhere, visit www.myheartcantevenbelieveit.com. E-mail firstname.lastname@example.org.