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If I Can't Say the R Word, Neither Can You

Scenes from a funny, blunt new memoir about raising a daughter with Down syndrome.

By Amy Silverman

When she was in third grade, my daughter Sophie became a bit of a tattletale.

"Someone used a really bad word at school today," she told me one evening after dinner.

"What word?"

"The S word!"

"Really?" I said. I was sort of surprised my 8-year-old knew the word shit. Then again, I had taken her to work with me at an alternative newspaper on occasion.

"What's the S word, Sophie?"

"Oh, I can't say."

"C'mon. It's OK. It's just us."

"OK," she said, before stage-whispering her answer. "Stupid."

Immediately, I worried that she was being bullied for her Down syndrome. 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.

On a cool winter day in 2003, I went in for an ultrasound—the non-routine, high-definition kind where they can see everything. I was 36 and six months pregnant with my second child and I should have been scared shitless given the serious look on my doctor's face, but I was oddly calm as I waddled toward the elevator.

The ultrasound had been a compromise.

A week earlier, I'd sat on another exam table in another medical building a few blocks away, shivering in a paper dress as my obstetrician suggested I get an amniocentesis. A blood test that screens for birth defects had come back showing an elevated risk of Down syndrome, he explained, and amniocentesis would create some certainty.

At the time, I really did not understand what Down syndrome was. I think I knew that Corky, the kid from that '80s TV show, had it, and that the baggers at Safeway—the chubby ones with the round glasses who made me uncomfortable, the ones I always avoided—had it, too.

I just knew that Down syndrome was part of the list of things you don't want your kid to have—right up there with spina bifida and Tay-Sachs—and that my unborn kid had a 1-in-214 chance of getting it, according to this doctor.

Those seemed like pretty good odds, but the guy looked so serious I got a little spooked. I called my husband, Ray, and explained the whole thing in a rush, telling him that there is a risk of miscarriage associated with amniocentesis, a procedure where doctors use a long needle to take a sample of the baby's amniotic fluid.

"That, and I don't really want anyone sticking a needle in my stomach," I admitted.

"If they find out she has it, can they fix it?"


"Then why would you get the amnio?" Ray asked. "You're six months pregnant. What are you going to do, get a late-term abortion?"

Well, when he put it like that—no way.

Looking back, I'll admit that I didn't get the amnio because I was afraid of a long needle and a painful abortion rather than because I was OK with having a kid with Down syndrome.

I don't remember ever using the word "retarded" as a pejorative, 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 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.

But "stupid"?

That's a tough one. Really, I can't use it anymore?

After my 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."

That's when I started using the word ridiculous a lot.

I couldn't think of anything else to say.

For so long, Sophie was my daughter who had Down syndrome.

She was cute, I knew I should love her, and I did love her, in some basic way. But she wasn't just my daughter in the same way our older child, Annabelle, was. It was never that simple, not for many years.

I was so busy worrying about the parts that I didn't let myself consider the sum. When Sophie was born, I abandoned the luxury of simply sitting back and enjoying my kid. Instead, I made doctor appointments and looked for therapists and fought with school administrators.

And admonished people who used the word retarded.

And then one day around Sophie's 7th birthday, I woke up and realized Sophie had become her own little person—something I'd long ago decided would never happen. I was wrong. She had ideas and opinions—sometimes even stronger than those of her peers.

One day I walked into her second-grade classroom to volunteer; the kids were learning how to use computers. Every other kid was on the correct screen, learning a basic function. Sophie had found her way to the Target website and was shopping for Olivia the Pig merchandise. The teacher smiled and rolled her eyes, and I suppose I should have scolded Sophie. But I couldn't. I loved every bit of her.

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.

Actual references to retarded intelligence did not come until the 1900s. Tim Shriver, head of the Special Olympics, ties that to the development of IQ tests, which 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."

The terms idiot and imbecile are no longer formally used. But mental retardation remained an acceptable medical term until very recently. And early on, I routinely used mentally retarded to describe Sophie's medical condition.

When I first heard noise about the move to switch the accepted term from mentally retarded to intellectually disabled or cognitively disabled, I balked. 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?

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 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 sign of racial regression.

Gross, huh?

And then the syndrome was officially named after him. 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.

I was raised by liberals. We would never, ever make fun of a black person or scorn a Mexican. We were good people—agnostic Jews who believed in the Golden Rule.

But did that apply to the developmentally disabled? I'm honestly not sure. I only have one family story that has anything to do with that.

My mom loves to tell my birth story. As she gets older, Sophie asks to hear it (along with her own birth story, and Annabelle's) over and over, so I know it well.

I was her first baby. She was three weeks from her due date, and it was almost Halloween. She and my dad were at the movies, and suddenly she had an overwhelming craving for candy corn, so he got her some. The next day, her friends threw her a surprise baby shower.

They lived in a small apartment complex—think Melrose Place but not as swanky—and there was a giant gong by the pool. To get my mom's attention, someone banged on the gong. It scared the crap out of her; she swears that's when her labor began, though to this day she's not sure whether to blame the candy corn or the gong.

Sophie loves the story. She doesn't know the part my mom and I stopped telling after Sophie was born. A few weeks before I was born, the phone rang. My mom picked it up. It was a strange woman.

"Mrs. Silverman?" she asked.

"Yes," my mom replied. "Who is this?"

The woman explained that she worked at the state institution for the mentally retarded.

"We have a space open for your baby, David Silverman," she said.

Quickly my mom explained that the woman had the wrong number and hung up. But she was haunted by the call.

David was the name she'd chosen for me if I'd been a boy.

"Ooooooh," we'd all say when she told it, like it was a ghost story.

I like to think it's more that we were ignorant than horrible. None of us had ever been around anyone with developmental disabilities. It just wasn't in anyone's vocabulary in our family.

Christopher Fairman, a professor at Ohio State's law school, literally wrote the book on the word fuck. 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.

Fairman, who died last year, 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 legal-ese.

Just a couple weeks before Fairman's piece was published, Rahm Emanuel, then the White House chief of staff, had apologized to Shriver and people with disabilities everywhere after The Wall Street Journal reported that Emanuel had called a group "fucking retards" at a private meeting held the previous summer.

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 said 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 said. "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," Fairman said. "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 Norse 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."

What are you supposed to say when one of your best friends calls and tells you that her baby has Down syndrome? I still don't know. I definitely didn't know when Sophie was born.

I'd get on the freeway and drive really fast and call my friends on my cellphone and tell them, one by one.

"Hey!" the friend would say, "I got your birth announcement! Congratulations! Cute picture! How's Annabelle liking having a little sister?"

I'd hit the gas.

"Well," I'd begin. "We have some bad news. Sophie has Down syndrome."

Silence. Sometimes there'd be sniffling on the other end.

This happened maybe half a dozen times before a friend stopped me, midsentence.

"You know, it's not a bad thing," Becky said. "I've worked with kids with Down syndrome, and they're some of the sweetest, most loving people I've ever met."

Um, they are? I had no idea.

At that point, I didn't even know the most popular stereotypes.

My favorite reaction came from my best friend, Laurie Notaro.

I called her during one of my drives and broke the news straight out. She gasped and started crying, saying, "Oh no, oh no, oh no, oh Amy, I'm so sorry."

I thought nothing of it.

Frankly, it seemed like an appropriate reaction to me. But her response obviously haunted Laurie, because later that day, I got an email:

Listen, I'm really embarrassed about our conversation this morning about Sophie. I didn't know what to say. And I've been thinking about her and you all morning, and I just want you to know that I said the wrong thing. I mean, when I said that I was sorry about Sophie and Down syndrome, that just came tumbling out. Since then, I've realized it was a stupid thing to say, because Sophie is going to be fine. She's just going to be Sophie.

Not long after that email, Laurie came to the house with two Baby Lulu outfits (the expensive ones, not the kind you can buy at Costco) and an apple Danish from the best bakery in Phoenix. She also gave me another gift—my favorite baby gift of all.

At the time Sophie was born, Laurie was putting the final touches on her third book of essays. She actually went through that book proof, page by page, and took out the word retarded every time it appeared.

"Well," she later explained, "almost every time. In some places, there just wasn't another word that worked."

GO: Amy Silverman reads at Powell's Books at Cedar Hills Crossing, 3415 SW Cedar Hills, Beaverton, 503-228-4651, on Thursday August 18 at 7 pm. Free. For more visit