“I don't mean it that way,” my daughter said. “Stop freaking out, Mom!”
I'm sure White House Chief of Staff Rahm Emanuel had a similar reaction when he got in hot water in January for calling liberal activists “f**cking retards.”
“I don't care if you don't mean it,” I’d tell him, as I told my daughter. “You know the origins of the word and how it's been used to discriminate against people like my 15-year-old son (above).”
Of all disabilities, mental retardation is most loaded with stigma—a badge that singles one out as subhuman, worthless, and elicits a shocking degree of hate and fear, even within the disability community.
As a parent of a child with mental retardation, I don’t mind the clinical use of the term. In fact, I bristle at the thought that my son’s medical condition is so shameful it can’t be named.
The colloquial use of the word “retard,” however, has got to go; it’s evolved, since the inception of the clinical term 50 years ago, into a hateful taunt against one of the most marginalized groups in society.
Why is the stigma so entrenched? Prejudice against people with low intelligence has a long, little-known history that gained momentum in the first half of the 20th century and included a state-sanctioned killing program in Nazi Germany. Social Darwinism and eugenics played into a ranking of human worth—based on intelligence, economic contribution and behaviour—in which people with intellectual disabilities were deemed genetically inferior and thus less human.
The result? Between 1939 and 1943, 6,000 German children with physical and intellectual disabilities were killed through starvation, exposure to cold, poisoning and lethal injection. Over 70,000 adults with disabilities—including mental retardation—were gassed to death during early WWII in six killing centres set up for the purpose.
To those who say that’s ancient history, let’s look at some of the more recent hate violence against people with intellectual disabilities. Last week, an Italian Facebook group with 1,700 followers proposed that children with Down syndrome be used for shooting-target practice.
U.S. officials are investigating whether the horrific torture and death last week of Pennsylvania-resident Jennifer Daugherty—a 30-year-old with a mental capacity of 12 years—qualifies as a hate crime.
And a New York Times Motherlode blog in January titled “Should Down Syndrome be cured?” produced a slew of reader comments that implied life with intellectual disability is less than human.
“The reason it is called a disability is because it is a lack of something that makes a complete human being,” one reader noted. “That is a tragedy; it is not another equally good form of personhood.” Said another: You’ll never meet a doctor or a lawyer with Down syndrome.”
Doesn’t that sound like a ranking of human worth based on IQ? Are people with high intelligence genetically superior, inherently “better” people than others? Are we less human when our academic intelligence is limited?
Eugenics-like thinking spills over into the field of prenatal genetic testing.
Sixteen years ago, when I balked at having an amniocentesis after finding out I had an increased risk of having a child with Down syndrome, the grey-haired obstetrician sent in to “counsel” me flipped: “If you have a Down syndrome baby, that’s a burden you’ll live with for the rest of your life,” he squawked, eyes popping and mouth twisting. “If you have (an amnio-induced) miscarriage, you’ll be depressed, but then you’ll get pregnant again and have a ‘normal’ baby.”
When I later gave birth to a child with a rare genetic condition, a genetic counsellor explained it was a random, not inherited, occurrence then enthused: “You have every chance of having a perfect baby—next time!”
Doesn’t talk of perfect and imperfect babies, of normal and abnormal babies—in the profession of prenatal testing—make you shudder? Isn’t it just a little simplistic? Is even the healthiest baby in any way destined to be perfect? I thought to be human was to be imperfect.
My son Ben managed to elude a diagnosis of mental retardation until he turned 11. He was challenging to test because he didn’t speak. I remember the day I opened a psychological report and for the first time saw those two words—mental retardation—staring back at me. “It doesn’t change anything,” I told myself, but as the night wore on I railed against it, unable to sleep, and wept in my boss's office the next morning.
But when I looked more closely, I saw that my sorrow wasn't for my son—who had not changed one iota since the night before and was no less whole in my eyes—but for the terrible stigma that had befallen our family.
And I couldn't help thinking, like so many other things I’d learned in life: “It’s not what I thought it was.” My conception of mental retardation prior to having Ben in no way matches the reality of his life—or of my ability to love him. My son is bright and clever and curious and a million other good things that are visible to people who take the time to get to know him. And he has a rare gift: he has no pretence. He accepts himself and others as they are. In that way, he is more able, more evolved, than I am.
My first instinct as a mom was to hide his diagnosis. But how will we ever change perceptions if we’re too afraid to talk about taboos? So I wrote about it in the hope that it would convey that my kid has this thing—and he’s awesome. Yes, my kid is mentally retarded and I love him. No, I would not change him. No, I do not feel his worth as a human being would increase if his intelligence shot up.
We also need to talk about the violence and discrimination associated with the common, crass use of the word “retard.” And in the same way we’ve outcast the N-word from the popular lexicon, we need to give the colloquial use of the R-word the heave-ho.
“You can’t ban use of a word!” some will say.
No, you can’t. But you can make it socially unacceptable to use it. Case in point:
My 10-year-old Haitian son Kenold came home from school one day and surprised me by saying: “Someone called me nicked.”
“Nicked?” I said. “Do you mean ‘naked’”?
Of course it didn’t take long to realize the kid had called him a “n**ger.” After discussing what the word meant and why decent people didn’t use it anymore, I called the principal. Her response was swift.
The next day, she called Kenold into her office and had him look through photos of the entire student body (Kenold hadn’t known the child who taunted him). As soon as he was identified, he was hauled into the office, educated about the word, and his parents were called. They were told if it happened again the kid would be suspended.
End of story. End of problem (though I know racism is something he’ll be up against all his life).
Things aren’t always that simple. But why couldn’t similar social limits be placed on kids’ use of the word “retard?”
The social justice curriculum that has helped rid schoolyards of racial epithets needs to be broadened to include the history of discrimination against people with intellectual disabilities and education about why the R-word is a hateful slur.
Then we need to hope that role models—from movie stars to Emanuel—get with the program to make demeaning people with mental retardation “uncool.”
I support Special Olympics in its awareness day March 3 to Spread the Word to End the Word.