Friday, February 26, 2010

The R-word: It's a hateful slur that's got to go


Use of the word “retard” is so pervasive it's said in the White House and even in our house. I remember when I first heard my pre-pubescent daughters and their friends—good, caring kids all—peppering their sentences with reference to how “retarded” certain people or things were. “Don't be a ‘tard,” rolled off one of their tongues and I felt like I'd been sucker-punched. “In the olden days, that's a word that was used to describe people like your brother Ben,” I said, eyes wide and wild. “It's demeaning and we don't use it.”

“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.

Reactions:

10 comments:

Words can never hurt you, sure they can. As a Mother of a 29 year old special needs daughter I brought up my 5 other children to never use the "R" word in our home. Just recently a family friend was sharing a story about her father, to my mother, that included referring to someone as the retard. I wanted to scream, has society not evolved at all that people still use this word. Generally I correct anyone using that word but for some reason that day I did not, maybe because I was tired from being in Emergency all day with my Mother that I had slipped. This story helped remind me why I explained to family, friends, co-workers why they should not use that word, how it can hurt. I must not slip again. Thanks so much for sharing your story. Pat A (Penobsquis, NB)

Thank you so much for sharing your story and all of this information. I admit to not being that concerned about the word, despite my daughter having its label. However, the more I read impassioned words like yours, the more I am swayed toward an equally vociferous response to its use at all.

I have also planned a post for Wednesday -- the Special Olympics pledge, etc. Thanks, again, for the inspiration.

“It’s not what I thought it was.”
It's not what I thought it was either - and that's important, my thinking as many other peoples is, was influenced by very wrong information, and that includes people in the health profession, those advising us as to prenatal screening. Being a doctor doesn't give one knowledge into raising and living with a child or adult with intellectual disability.

Society is very obsessed with the idea of "contribution to society", whether that be financial or intellectual. That intellect is highly valued is obvious in the way people treat each other everyday. It saddens me. That we feel the need to feel "better" than others in some way or other, what is that?

As far as I'm concerned there is no better or worse, just "is".

Hi Pat -- Thank you for sharing your story. I hope we get to hear more about your daughter! Louise

Hi Elizabeth -- I wasn't familiar with a lot of the history of violence against people with intellectual disabilities. I look forward to seeing your piece this Wed! Louise

Hi Emma -- thanks so much for your message. It makes me very sad, too, to think that people associate human worth with economic contribution. What about character or heart contribution? But I don't believe any life needs to be "justified" by any kind of contribution. It has value because it is.

Thank you so much for your wonderful post. It's when we stop examining our own prejudices and short-comings that we stop evolving. Our growth should not be measured simply by what we acquire (intellectually and otherwise), but by those qualities in ourselves we recognize it is time to leave behind. All the best to you and your family...

I am shocked that our educators don't take as much care with the R word as they do with the N word. The middle school I went to had a class of children with mental retardation. (This was back in the 70's when kids were lumped into class groupings based on IQ). I was one of the kids who played with them on the playground every day. I found them a lot more humane and easy to be with than the "regular" kids in the rest of the school. I was never taunted or bullied by them, but I was taunted and bullied by kids in the rest of the school.

I refused to have an amnio with my second pregnancy (I was over 40) because to me, while the amniocentesis is a diagnostic test, it seems to fall into a subtle eugenics program where parents are aborting "imperfect" children, and I wonder if this social trend, aided by science and medicine, will lead to fewer and fewer people with all kinds of disabilities... and whether that will in turn lead us back to more stigma and less understanding for disabilities.

I had my own experience w/ this word just this past week....at the bank and of all reasons to open an RDSP for my son. When I got to my appointment they explained to me that they do not have an RDSP specialist at our branch and had no plans of training one and that I would have to drive an hour to the next branch in another town to open one. I asked them if they found it odd that they have accessibility issues to resolve when it comes to opening up an RDSP for one's self or their child....the response from the bank employee..."I know, it's retarded". My immediate thought, simply put was "wow".