The “r-word”

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I remember the first time I heard the word “retarded.” I was nine years old. A large group of us were playing around a basketball hoop during school recess. Someone’s shot didn’t even come close and another boy we were playing with yelled out, “Wow, what are you, retarded?” I wasn’t sure what it really meant, but I knew it was mean. Everyone was laughing, except the boy the comment was aimed at. He hung his head in sadness and embarrassment.

I knew it was wrong. I knew it was mean. I didn’t immediately add it to my vocabulary. I also didn’t have the courage to stand up for what was right. I joined in on the seemingly harmless laughter.

And then middle school hit and the word started to make more of a daily appearance among my friends. By high school everything negative was “retarded.” A teacher who was “too tough.” Homework. A school dance cancelled. People we didn’t like. A coach not putting us in the game.

In college, for some reason, the word became a way to describe how inebriated one got drinking the night before. “Man, I was retarded last night.” or “He got retarded.” As if individuals with disabilities must only have the physical functioning and decision-making abilities of someone who is incredibly drunk.

Years after college the word continued to flow out of the mouths of seemingly everyone around me. My friends used it, strangers used it during causal encounters, I am ashamed to say, I used it.

Not doing anything right, was instantly “retarded.” A phrase to console a friend who did not receive the promotion they deserved, “retarded.” It seemed to be the the most adequate way to describe anything negative, messed up, or wrong. It flowed out of mouths without a second thought. As second natured as swearing when stubbing your toe.

I don’t think I would have remembered or even had a second thought about that day on the playground at recess when I was nine, if I didn’t have Annie. But when the doctors laid her tiny, limp body on my shoulder after my c-section, and I knew instantly that she had Down Syndrome, I immediately flashed back to the time I was a nine year old girl in my Catholic school uniform laughing at such a hurtful word.  I couldn’t get that memory out of my head. And it just kept spiraling, all the times I heard or used that word. Over the next few days I cried more than I ever had in my entire life before, combined. I sobbed and sobbed and broke blood vessels under  my eyes. I didn’t know the human body was capable of producing tears every minute of every hour for so many days in a row. Or capable of feeling so much hurt. These memories made me think this is what the world will think of my daughter. A joke, terrible, negative, and unwanted.

Can you even begin to imagine how terrifying that is? To even have the thought cross your mind that your new daughter, the daughter you’ve been dreaming of since you were a little girl, the daughter you carried for nine months and talked to everyday in excited anticipation of her arrival, that that very daughter is something the world could view as negative, sad,  unwanted. It was devastating.

And then to learn while researching the syndrome your child has been diagnosed with, that over 90% of prenatally diagnosed pregnancies with Down Syndrome are aborted, unwanted. To think that bringing Annie into the world was an “option” most would not have taken. Heartbreaking.

I’d be lying if I said having a child with Down Syndrome is easy. It’s not. Those first days after her birth were some of  the darkest and saddest days of my life. The hardest part is thinking that the world views your baby as “less than.” And getting over what I thought I knew about what living with Down Syndrome is like because of what society had engrained in my head. How could I have possibly known what living with Down Syndrome is like without living with it?! And it was hard letting go of the negativity that the all too often and extremely casually used word “retared” brings. These are honestly the hardest parts of having a child with Down Syndrome. And they go away, maybe not all the way, but they do.

And the hard things like therapies, and feeding issues, and extra doctors’ appointments, they really aren’t all that hard at all because of all of the love we have for Annie and all of the love she brings us.

Everyday since those first weeks of so many tears has been easier than the day before. Annie leads the way.  She is a perfect example that having Down Syndrome isn’t all those pictures I had in my head because of the hurtful way so many use the word “retarded.”

I am asking that you please help to stop the negative use of the “r-word.” I never thought I was doing any harm when I used it. But I was. It does do so much harm. And it doesn’t only hurt my daughter and other individuals with intellectual disabilities. It hurts families. It hurts mothers, and fathers, and sisters, and brothers. It hurts even those facing a prenatal diagnosis. And maybe their decisions would be easier if the way this word is used didn’t make it so scary. When Annie was born, I was scared too. But she has taught me and everyone she meets that there is absolutely nothing sad, terrible, or unwanted about having Down Syndrome.

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3 responses »

  1. When I see Annie, the words that come to mind are cute, funny, lovable, lucky, hard working…. 🙂 LYM.

  2. Love this, Annie and your family Colleen! Thank you for sharing. That picture of her is absolutely precious!

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