Losing them, fixing them, forgetting to put them in
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When he diagnosed my three-month-old, Fiona, with a chromosomal disorder, the redheaded, cherubic medical geneticist did not use the phrase “mentally retarded” — thank God, or the gods of rhetoric, or just the politically correct medical school the young doctor had attended. (He was my age, thirties, about to start a family of his own.) This was in 2012, one year before the Diagnostic and Statistical Manual of Mental Disorders replaced “mental retardation” with “intellectual developmental disorder.” So he could officially have said “mental retardation.” Instead he said that most people with Wolf-Hirschhorn syndrome “have intellectual disabilities to some degree.”
I nodded. The phrase did not crack the earth open and pull me under. Intellectual brought to mind a monocle. A New Yorker article. Attending a Gloria Steinem lecture. Disability can mean: an impairment that limits activity. This is what I immediately grasped about the wiggling seven-pound infant who was waking me up three times a night: that attending a Gloria Steinem lecture while wearing a monocle and holding this week’s New Yorker might pose a challenge for her. I could live with that.
Of course I knew the truth was otherwise; that adding numbers, tying shoelaces, sounding out big words, saying any words — that these tasks, too, might pose challenges for my daughter. “But we won’t put limits on her,” the doctor went on to say. “We’ll help her be all she can be.”
In certain moments a U.S. Army ad slogan is precisely what you need to hear.
I looked at my little girl, whose onyx eyes were as black as eight balls. The diagnosis seemed manageable. After all, the intellect could not feel a ray of sunshine. The intellect performed the sterile dissection of thoughts with its sharpened scalpel. I appreciated my own intellect, with its ability to analyze TV shows or parse a sentence. But the intellect is not everything.
In the 1950s the word retarded was progressive, an improvement over feebleminded, imbecile, moron. It shares a root with ritardando, a musical term meaning a gradual decrease in tempo. Think: the musicians’ fingers letting the moments stretch between their notes.
To retard, to slow down. As in: Your baby’s growth is retarded.
But retarded soon came to mean dumb or incompetent. As in: I just lost my phone. I’m so retarded.
As if to say, I just did something stupid. I’m so like your daughter.
It’s sometimes called the “R-word,” as if it cut to the same depth as the nation’s most infamous epithet. “Spread the word to end the word,” implores the Special Olympics advocacy campaign, with some success. On October 5, 2010, President Obama signed Rosa’s Law, a bill that strips the term “mentally retarded” from many federal documents. On May 27, 2014, nearing the end of a session, the nation’s nine Supreme Court justices finally agreed on something: “Previous opinions of this court have employed the term ‘mental retardation,’ ” wrote Justice Anthony Kennedy. “This opinion uses the term ‘intellectual disability’ to describe the identical phenomenon.”
But in 2015 I still find myself circling the word on my now three-year-old daughter’s medical records. I write a note to the doctor in the margin, offering up a tired parent’s best attempt at social activism.
By the time Fiona was eight months old, her onyx irises had turned sapphire blue, like miniature Lake Tahoes. Those eyes demanded you return their gaze.
“She’s very alert,” friends would say after they learned of her diagnosis. At first I suspected the comments came from low expectations, the equivalent of a trophy for participation: At least she’s alert. At least she knows others exist. The geneticist had used the same word, alert, when he’d told us she was on the better end of the spectrum for Wolf-Hirschhorn syndrome.
But remarks kept coming about the intensity of her gaze. People were dazzled, mesmerized, sometimes even disturbed by it.
An Australian friend and father of two held my daughter and made eye contact with her. “It’s almost unnerving,” he said, “the way she looks so deep into you. I’ve never seen a baby do that.”
“Mm,” Fiona said. She was nine months old then, and still nine months away from being able to sit up by herself.
“Wow!” a voice said in the grocery store seven months later. I turned from a shelf of protein bars to find Fiona smiling at a woman with dark-rimmed glasses and dangling earrings. “Well, hello!” the woman said to her, then to me: “She’s so friendly. How old is she?”
“Sixteen months,” I said, awaiting the gasp. My daughter was the size of a five-month-old, lying limply in an infant car seat. Nervously I added, “She’s small for her age.”
“She has a big soul,” the woman told me, still locking eyes with my daughter.
A few months later a friend visited from out of town. He and I had become parents at the same time, and our kids were about to turn two. His was running around, pointing to objects in the apartment, asking, “Dat dat?” — What’s that? — and repeating his father’s answers with fuzzy but unmistakable accuracy. My child was lying on her back, staring at the ceiling, and saying only, “Mm” — perhaps meaning “Yes,” or “No,” or “Pick me up,” or “I love you.” I had no clue.
My friend picked Fiona up and looked into her eyes. When he turned away, she said, “Mm,” and tried to catch his attention again. “I feel like she’s looking into me,” he said.
Even the cynic in me has grown to accept that there’s something both amazing and a little alarming about my daughter’s eyes, as if she is not just seeing but somehow illuminating the objects in her view, although she cannot tell me what she observes.
The word cretin is from the eighteenth-century French crétin, meaning Christian. As in: Even though you’re disabled, you’re still a child of God. But if I were to say, “Hello, cretin,” to you, I doubt you’d get good Christian vibes.
Before imbecile and moron and cretin, we had one overarching category: idiot. An idiot, declared a sixteenth-century English lawyer, “is so witless, that he cannot number to twenty, nor can tell what age he is of, nor knoweth who is his father or mother.”
I read this and wonder: Would my daughter have been called an “idiot” if she’d lived in the sixteenth century? When I walk through the front door, she points her fist at me and says, “Om!” — Mom. Likewise, if I ask her, “Where’s Dad?” she points her fist in his direction. But she cannot say our names. If a sixteenth-century English lawyer had asked her, “Who is thy father and thy mother?” I doubt she would have given an acceptable answer.
In 1910 American psychologist Henry H. Goddard placed people who scored below average on IQ tests into three categories. An “idiot” was an adult who functioned at a two-year-old level. (Today we use the phrase “severe intellectual disability.”) A “moron” was an adult who functioned at an eight-to-twelve-year-old level. (Today these people have “mild intellectual disabilities.”) The word imbecile was reserved for a person in between a moron and an idiot. A hundred years ago most people with Wolf-Hirschhorn syndrome would have been called “imbeciles.”
I hope my daughter achieves the diagnosis of “mild intellectual disability,” but I know this is an optimistic goal. I also know that if I were living in the early twentieth century, I would be optimistically wishing my daughter might become a moron.
Language evolves. The respectful term can become an insult when the person it describes is devalued by society. So, to restore respect, we change the language. We think that we can outpace the insults, rewire the mind with new words before the culture twists those words, too: Moron. Retard. Person with one arm bent at the elbow, hand turned toward the belly, speech slurred and wet.
Harvard linguist and cognitive scientist Steven Pinker says this language campaign is a fool’s mission. Pinker refers to these politically correct revisions as the “euphemism treadmill.” Imbecile, retard, mentally handicapped person, someone with intellectual disabilities.
“The euphemism treadmill shows that concepts, not words, are in charge,” Pinker wrote in a 1994 Op-Ed. That was more than twenty years ago, but the field of linguistics is still largely in agreement with what he said: “Give a concept a new name, and the name becomes colored by the concept; the concept does not become freshened by the name.”
A blogger writes that she passed a dog that looked “retarded” and said so to a companion. When the companion told her the proper term was “special needs,” the blogger said, “OK. That dog looks special needs.”
A friend of mine, the mother of a boy with Wolf-Hirschhorn syndrome, attended a kid’s birthday party with her son. When the birthday boy was acting rambunctious, his mom stopped him and said, “Quit acting like you’re special needs.”
I want to disagree with Pinker. Of course words create thoughts. George Orwell made as much clear with his novel 1984, in which a vocabulary limited by totalitarianism acts like a boa constrictor around people’s brains — because if you can’t say a word, you can’t think it. Right?
This theory began with an insurance-company-worker-turned-linguist named Benjamin Lee Whorf. In the 1930s Whorf became famous for the idea that our language shapes our thinking, and the concept quickly gained popularity. Orwell published 1984 a decade later. But by the 1970s enthusiasm for Whorfianism, as it had become known, had waned for one simple reason: nobody could find any proof. And in 1994 Pinker declared it dead.
In photographs Pinker’s face is angular and framed by wild gray curls. He’s been on Time magazine’s annual list of the “100 Most Influential People in the World.” He’s on Prospect magazine’s list of the “World’s Top 100 Public Intellectuals.” He’s taught at MIT, Stanford, and Harvard. He’s received eight honorary doctorates. And he insists, “Words are not thoughts. Despite the appeal of the theory, . . . no cognitive scientist believes it.”
If retarded has come to mean “stupid,” then it does not fit my girl. At the age of three Fiona is not stupid. She has a genetic condition. If genes were architects, and if it usually takes twenty-four thousand architects to design a human body, then 120 of them skipped out on drawing the plans for my daughter’s brain, which seizes when she’s feverish. An EEG shows abnormal spikes and waves, especially during sleep. Her corpus callosum is too thin, causing shaky balance and poor communication between the left and right hemispheres. Despite the fact that she understands a thousand or more words, her brain cannot yet get her mouth to utter them. In fact, her mouth can say only variations of um, hum, om.
Because her brain, which is 73 percent water, cannot get her mouth to say “water,” she has renamed it “um.” As in yum. And I think how brilliant she is, matching the easiest syllable she can pronounce with the substance her body is made mostly of, the fluid she cannot live more than three days without. “Um,” she says, pointing to her sippy cup, and I give it to her. She grips the handles, takes a drink. Then she pulls the cup from her mouth, a content smirk on her face, and says decisively, “Um.” Water.
“Retarded children can be helped,” declares Mental Retardation: Past and Present, a 1977 report written for President Jimmy Carter. “Persons who are retarded, who are defective, slow in mind, deformed and misshapen, spastic, epileptic, are still human beings.”
Even as the 1977 President’s Committee on Mental Retardation confirms that all people with intellectual disabilities have the right to “a share in that ever-expanding American dream,” it describes them in terms we use for products we’d like to send back: Deformed. Misshapen. Defective. In other words, broken and suitable to be returned.
Of course, that was almost forty years ago. We have come a long way since then — but not far enough. I read again and again in contemporary reportage the words birth defect. (A Google search indicates the phrase appeared in more than two hundred news sources in one month alone last year, often in stories arguing to allow late-term abortions.) Some kids receive stuffed bears in their bassinets on their first day of life outside the womb. Others get medical labels of rejection.
When I call my daughter’s pulmonary-valve stenosis a “heart condition” rather than a “heart defect,” I don’t care what some Ivy League linguists say: my term creates a cushion around her, like a plush blanket. Her body is cradled in acceptance.
Defect is a dagger.
As a kid I attended an elementary school that was in the geographic middle of its district. Because of its central location, any child with disabilities was bused to our school.
The kids who used wheelchairs or walked staggeringly or slurred when they spoke or didn’t speak at all were taught in a different wing of the building from the rest of us. We called those kids “handicapped.” We called them “mentally retarded.” We called them these things because that’s what we were supposed to call them back then. Sometimes one of the kids was pushed down the hall in a wheelchair with padded headrests, pushed out of sight. On my way to my classroom I passed the hallway that led to their wing. At first I tried to catch a glimpse of their mysterious domain, but as the school year wore on, I stopped looking.
Today Fiona attends an “integrated” preschool classroom, where typically developing kids and kids with special needs learn side by side. She is not sequestered in a separate part of the building, hidden from view.
In my elementary school, where the “handicapped” students were mostly invisible, there was a mythology about them: They seemed broken. They seemed pitiful and sad and not smart. The architecture of the school emphasized that we had no reason to interact with them. Theirs seemed like a country in which nobody wanted to live. Because they sometimes made sounds that resembled moans, I imagined they were suffering.
Before my husband and I got married, he supervised an assembly line in a work space for people with intellectual disabilities. It was called the Bucks County Association for Retarded Citizens, but by the time he worked there, in 2003, no one ever spoke the organization’s full name. The people used the acronym, BARC.
My husband’s clients placed items into boxes and taped the boxes shut all day long. For this they were paid pocket change. Once, my husband tells me, there was an error on the assembly line. One of the clients shouted to the man who’d made a mistake, “Quit acting retarded!”
“You’re retarded!” the other guy shouted back.
A third client at the end of the line said in a flat voice, “We’re all retarded. That’s why we’re here. Now get back to work.”
In January 2012 three-year-old Amelia Rivera made national headlines when the Children’s Hospital of Philadelphia denied her a lifesaving kidney transplant. In a blog post her mother describes a meeting with a doctor. He shows her a form on which a phrase has been highlighted.
“This phrase. This word,” Amelia’s mom says to him. “This is why she can’t have the transplant done.”
The doctor tells her yes.
“I begin to shake,” she writes in her blog. “My whole body trembles, and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
Without a new kidney Amelia could have died within six months, maybe a year. The story was covered by the major news outlets. The hashtag #TeamAmelia spread on Twitter. More than fifty thousand people signed a Change.org petition demanding that Amelia be granted access to kidney-transplant surgery. The fight was not over the availability of an organ; relatives of Amelia were willing to give theirs. The fight was over Amelia’s right to live.
Amelia and my daughter have the same syndrome. Her story hit the news when Fiona was just six months old and I was still waking up, not only to the fact that Wolf-Hirschhorn is potentially life threatening but also to the way the world regards my daughter.
A few days later Amelia’s parents were invited back to the hospital. A committee of doctors had reconsidered the decision, and Amelia eventually received a new kidney. Still, it seems that every year another person with intellectual disabilities makes headlines for being denied a lifesaving intervention, and Op-Ed writers offer elaborate defenses of the doctors. In a Huffington Post article defending the doctor’s original decision, Lisa Belkin states that because Amelia — whose parents describe her as happy — is nonverbal and nonambulatory, her condition is “heartbreaking.”
My daughter is a rascal toddler in an eighteen-pound body. She loves cheese and upbeat dance tunes. Her favorite pastimes include learning sign language, splashing her younger sister in the face, and gazing into your eyes as if communicating psychically. But, yes, she is currently nonverbal. She currently cannot walk. When Belkin lists these two “heartbreaking” qualities while arguing that a person with Fiona’s level of disability shouldn’t have a transplant, I have to ask: Whose heart is breaking here? Just because a child’s disability breaks Belkin’s heart doesn’t mean that child’s heart should be allowed to stop.
I studied disability in graduate school. I read arguments about cultural biases and the connotations of labels. Intellectually I knew certain labels revealed the culture’s prejudice against people with disabilities, but I didn’t feel a knife to the gut when I came across them in print, the way I do now that one of the people I love most is placed in a category the world has historically shunned. The Greeks and Romans encouraged infanticide of babies with so-called “birth defects”; the Spartans required it. I no longer regard this ancient history as irrelevant to my life.
Pinker doesn’t believe that a phrase such as “person with intellectual disabilities” will put an end to stories like Amelia Rivera’s. But here is why I, a nonlinguist and non-PhD-holding mother, disagree: On the day of my daughter’s diagnosis, when the doctor did not say “mentally retarded,” it meant the ghost of my elementary-school years was not welcomed into that examining room. That ghost was pushed back into the hall to idle with its ghost-cousins imbecile, moron, and idiot.
If the redheaded geneticist had used the term plenty of doctors still use when diagnosing children with my daughter’s syndrome, I would have fallen down a rabbit hole of grief. Why? Because my daughter would have been linked not simply to those children in my elementary school but to our culture’s way of treating them: Cooped up. Isolated. Other.
“Intellectual disabilities” was new, fresh, curious. “Most children like yours have intellectual disabilities to some degree,” the geneticist said, doing what champions of “person-first” language recommend: putting people first in the sentence and their condition second. He described something my daughter could have, like a pebble in her pocket or a cowlick in her hair, rather than declaring her to be something, giving her a label, a sticker on her shirt: Hello, My Name Is Mentally Retarded. Hello, My Name Is Stupid. Hello, I Am the Cousin of Moron and Cretin. Hello, My Name Is Broken.
In the field of linguistics, few are eager to align themselves with Whorf and his theory that language shapes thought. It’s considered either untestable or, more often, flat-out wrong. But Lera Boroditsky, who became an MIT assistant professor in her mid-twenties, had nothing to lose. “It wasn’t like I had a whole career and I was putting everything on the line,” she told The Boston Globe. “I just thought, ‘This is a question I’d like to find an answer for.’ ”
Does our language shape our thoughts? Consider Boroditsky’s evidence:
Speakers of languages that are geocentric rather than egocentric — who say, for example, “There’s a spider southwest of your leg,” instead of, “There’s a spider to your right” — are far better navigators.
Speakers of Russian, which classifies light blue and dark blue as separate primary colors, can categorize shades of blue faster.
In Finnish there are no gendered third-person pronouns — no he or she — whereas Hebrew has not only he and she but also gendered versions of the second-person you. Israeli children learn their biological gender a year earlier than Finnish children.
When Spanish-speakers are asked to describe bridges, clocks, and violins — all of which are given the male article el in Spanish instead of the female la — they describe them as having masculine properties. Speakers of German, which gives those same nouns female articles, describe them in feminine terms.
“Different languages encourage different kinds of cognitive expertise in their speakers,” says Boroditsky, “and, as a result, speakers of different languages end up thinking differently.”
It might sound like common sense, but in the field of linguistics Boroditsky’s claim is treated as blasphemy by some. Derek Bickerton of the University of Hawaii writes, “If a language chooses to divide the terrain of blue among other colors, that is its business; it does not reflect anything about how its speakers think.”
Pinker dismisses Boroditsky’s findings with a joke: “Just because a German thinks a bridge is feminine doesn’t mean he’s going to ask one out on a date.”
I am trying to give my daughter a language she can speak. If asked to, she can point to her nose, eyes, ears, mouth, arm, leg, foot, shirt, pants, hat, shoe, sock, tongue, or toe, but she cannot say a single one of those words. She understands several hundred sentences: Take off your hat. Do you want to go for a walk? Put the toy in the bin. Stop throwing crackers. Do you want some cheese? We’re all done watching this television show.
She often cries in response to that last one, but she can’t say anything in protest.
Recently I bought Fiona an iPad with a strawberry-red foam case and purchased an app that displays on the iPad’s screen more than a hundred icons, each featuring a word and its corresponding picture. When you tap your finger lightly on an icon, the app speaks the word you chose: Stop. Open. Get. Sleep. Each of those icons can also let you access a screen of secondary words. Touching Eat, for instance, opens up an additional screen filled with food words like apple, cheese, and chocolate.
Buying the app shouldn’t have felt rebellious and revolutionary, but it did.
“Whoa,” said one therapist when she saw the hundred-plus words and pictures. “That’s a lot.” She thought the icons were too small for Fiona’s nascent fine motor skills.
“She’s not ready for all these words,” said another therapist, who predicted the app would be overwhelming to my daughter. She recommended I teach her one word at a time using flash cards.
Another therapist recommended an app with just nine preprogrammed sentences. For example, the app said, I want the star toy, when you pressed a photo of a tower of stars. But the sentences allowed for no creativity. The app would have locked Fiona into saying, I want the star toy, even if she really wanted to say, This star toy is busted, or, This star toy reminds me of a dream I had, or, We should buy many, many star toys and scatter them all over the lawn.
One therapist, however, told me, “Give her all the words. She can understand them, so give her the opportunity to say them.”
For months I tried to teach Fiona how to use the app. I also gave her time to explore it on her own. She swiped at the screen, hitting icons at random, creating streams of unrelated words that sounded like bizarre avant-garde poems, spoken by the app’s electronic voice.
us cheese away
here ride because mom
we stop stop
us cheese away
here ride because mom
we stop stop
I wondered if those dissenting therapists had been right, if I’d been a fool to think my daughter could use the app.
But one day, sitting in her highchair, my daughter pointed to a different device on which she watches television shows. “No shows right now,” I said. “Eat your cheese.” I pushed an icon on her app. Eat, the electronic voice said. The screen changed, and I pushed another. Cheese, it said. I pressed the whole phrase: Eat cheese. Then I walked into the kitchen to start dinner.
The names of my daughter’s favorite TV shows were programmed into the app. To find them, she first had to touch Look on the main screen. That brought up a second screen with icons that would let her say, Sesame Street, Yo Gabba Gabba!, and Super Simple Songs. While I had my back turned, cutting carrots for dinner, I heard a beautiful phrase float over the dining-room table and into the kitchen: Look . . . Super Simple Songs. I turned around. My girl’s blue eyes were shining. Her mouth opened into a smile, exposing widely spaced teeth. My girl wanted to watch Super Simple Songs. I walked over and hit PLAY.
Maybe Pinker is right; it’s inevitable that the words we prefer today will turn sour with use. Any new phrase will eventually be stained by the culture, and activists will someday have to protest it. “ ‘Intellectual disabilities’ carries less baggage with it at this moment,” says Douglas Biklen, Dean of the School of Education at Syracuse University. “Twenty years from now, it can become the new epithet.”
Quit acting special needs.
Pinker’s theories might actually provide comfort, too. He argues that our minds speak their own language — mentalese — and our words only approximate what our brains think. We might have thoughts for which we don’t have precise terms, but that doesn’t stop us from having the thoughts. I find it liberating to believe that our ideas aren’t tethered to language. It means someone can behold the beauty and complexity of my daughter without needing a word for her that might eventually come to mean “idiot.”
But this theory cuts against my belief that we need words; that a name gives shape, creates order, provides meaning.
These days my daughter speaks quite a bit with her app. Much of it is random. But from time to time she says something appropriate. She says, Mom. She says, Dad. She says, Tater tots. She says, Super Simple Songs. When I ask if she wants to play with her sister, she shakes her head no, finds an icon, touches it, and says, Cathy: she wants to play with a friendly woman from our church.
If Fiona has something to tell me, she jabs her determined little thumb at the screen until she hits the word she means. It sometimes takes her several tries. Often she hits the wrong word. But when she lands on the right one, she stops her jabbing, looks up at me, and smiles.
Heather Kirn Lanier
I appreciated Heather Kirn Lanier’s “The R-Word” [May 2015]. When my son was born almost fifty years ago with a chronic medical condition, doctors told me he had a “birth defect.” Every new term for disability seems to turn into a slur over time, but at least many of us are trying to be sensitive to the effect our words have.
Although he has never heard the word retarded, my son wears a T-shirt that reads, SPREAD THE WORD TO END THE WORD (a Special Olympics campaign to eliminate the word’s use). He was labeled “developmentally delayed” until he turned twelve, and “intellectually disabled” became the preferred term. At twenty-one he will be labeled “developmentally delayed” again, as though he might someday catch up to his peers. I enjoyed Heather Kirn Lanier’s take on this process of labeling. These inaccurate descriptions have helped my son get the services he needs in school, but I do not use them around him. I simply tell him he is perfectly himself.