My son Charlie is 4 years old and has Down syndrome. From the moment we suspected his diagnosis, when he was still growing in my belly, my husband's and my view of humanity sharpened. Words that used to rush past us suddenly lingered, floated before our eyes and slapped us in the face.
The R-word: retard. Retarded.
I remember the first time a colleague used it in front of me after I learned Charlie had Down syndrome. I was sitting in my cube and it flew at my head out of nowhere. She saw it floating there, too, and tried to brush it off. Said something like, "Sorry, you know what I meant."
Of course I knew what she meant. I'd used the word, too, I'm ashamed to say. I didn't have a good response then, but I do now. Now, I say, very calmly, "Please don't use that word." I've never had someone counter that request. Most people apologize. But each encounter has left me wondering… did my polite protest make any difference?
Photo credit: Glenn Roberson Photography
A dear friend agreed to share her story, because her use of the R-word truly had an impact on us both. I hemmed and hawed about asking her to share her story, because the last thing I want is to prolong the agony I know she felt. She's a good person. She never meant to hurt anyone. We moved past the incident. No need to dredge it up, right?
Maybe. Maybe these stories will help others realize what one word can do.
Sandy, 49, is a firecracker. She is tiny and blond and has the perfect pixie cut every woman wishes she could wear. We met years ago, when we were both single. Two husbands and eight kids later (between us, that is), her passion has landed where it belongs: She works for a nonprofit, raising money for pediatric cancer research.
For this article, I asked if she used to use the R-word a lot before our incident. "I can’t honestly say but because it rolled off my tongue with ease, my assumption would be that it was a word I used without any thought around its origin, the individuals it represents or the families that it would affect by hearing it," she says.
"God, I am so retarded"
Three years ago, we worked at the same company together and she was one of several dear friends who organized a baby shower for me when we were expecting Charlie's sister, Mary Emma. I'll let Sandy take it from here.
"I was desperately trying to get the plastic wrap off of the napkins," she remembers. "I tugged and pulled and it simply would not budge, and without thinking (which is an indication that the R-word was part of my speech vernacular) I blurted out, 'God, I am so retarded!'"
Cue the soap opera music
Sandy says that moment changed her perspective forever. "…[S]tanding in front of me was the mother of a very special little boy who just happens to have Down syndrome. Which, means, the ugliness of the word suddenly slapped me right across the face. Her gracious and kind look at me when we both realized what just tumbled out of my mouth was one of the most painful moments I ever recall experiencing in my life.
"I immediately responded with, 'Well that wasn’t very PC was it,' but the truth was I wanted to crawl under a rock or run. She could have handled it in numerous ways, and maybe she has with strangers, but as a friend, all it took was her eyes. Seeing the flash of pain was enough to move mountains."
Defeat? Or a beginning?
I remember the moment so vividly, because I fumbled to say something funny or lighthearted as the whole room suddenly became filled with eyeballs staring at me, waiting. I said something like, "Oh, Sandy, you get a pass." But my heart hurt. I pushed past it for the rest of the baby shower, and tried to believe Sandy's early departure from the party was really because she had a meeting.
On the drive home, I felt so defeated. I kept thinking how, if someone like Sandy, who has the biggest heart on the planet, could use the word so thoughtlessly, how could I ever pretend I could really help strangers understand why the R-word hurts? I cried the whole ride home.
Not an hour later, I was sitting on the sofa in all my hormonal glory when I got an email from Sandy. It was the most heartfelt, apologetic, self-deprecating email I've ever read. She talked about feeling like she had let God down.
I immediately replied, sobbing and poking at my BlackBerry not two inches from my eyes, struggling to see through the tears. I thanked her, told her I loved her and begged her not to beat herself up. I had known all along that her heart meant only good, but her email healed my soul.
I realized Charlie had made a difference.
Sandy says she's glad it happened. "We all need a reality check in our lives," she says. To those who still say, "But I didn't mean it," she has this: "There is no excuse in our culture with probably more than 200,000 words to select to use words that conjure up pain, ignorance or segregation."
Most importantly, to me, she really is an advocate for individuals with Down syndrome. "It is now so raw for me to hear people fling a word around without any thought as to who it may hurt," she says. "[My family] know[s] that word is forbidden," Sandy shares. "And I always say something to our young adult children when they choose to use it. I would rather hear a vulgar swear word than the R- word quite frankly."
Can we ever ditch the R-word?
Realistically, we're several generations away from eradicating the R-word, and I'm not naïve. I know another word is likely to take its place. I've begun to work hard on refusing to let a simple word upset me. But it's hard. I know one day I will hear my son ask why someone has called him that word, or help my daughter learn how to respond if she hears someone use the word.
"It will take patience, knowledge, exposure and understanding and a reality check by many more before we can eliminate it completely," Sandy says. "This is not the only word, there are other words in our language I would like to see become extinct; a footnote in a history book but not part of our speech, our clumsiness, our ignorance or God forbid, our hatred."
Undoubtedly, it will take time. But for now, because of Sandy, I feel hope, and so much love.