Why It Hurts

This is a re-post from my blog from March 2008, but the words still need to be said over and over until everyone gets it. I know I’m preaching to the choir here, but hopefully someone will read it and find it helpful today.

Tonight I have been surfing the net and checking up on some of my friends from myspace. If you’re one of those friends, please know that I finally took down my Christmas music! I’m worse than those people who leave their lights up until June! haha

Anyway, I was browsing through some pictures on a friend’s page who is from our church in California (and is involved in leadership there). I saw a picture that literally knocked the wind out of me. I felt sick. Light-headed. And then I felt angry. And now I’m sad.

I thought about posting this picture here so you all could be livid with me, but really, I don’t want to give any more credit to the person who created it. (I’m almost positive it was not made by the friend who has this on his page.) Let’s just say, it’s sick, cruel, disgusting, degrading, and it involves the word “Retard” and a picture of a child with Down syndrome. I can almost hear all of you parents in the Down syndrome community groaning.

A couple years ago, Downsyn, one of the message boards I post on, was hacked into. Pictures of many of the children from the board, including Kennedy’s, were stolen. The hackers wrote horrible things on the pictures and reposted them for all to see. Our administrator, Tom, took immediate action to get them removed from the net. Still, our hearts were shattered and our group was shook to the core.

For those of you reading who are NOT part of the Down syndrome community, let’s talk about this for a minute, please bear with me. The “R” word is something that some of you might use… you may use it to describe yourself when you do something dumb. “I’m so ‘R’.” You may use it when you think something that happened was dumb. “Man, that was ‘R’.” Chances are, if you use it, you’ve been saying it since childhood and you’ll say that you don’t mean anything by it. You’ll say that you’re just joking around. You’ll say that it has nothing to do with our kids. “Everyone” says it, right?

So here’s the thing. Kids with Down syndrome, in most cases, have mild to moderate mental retardation. It’s a medical diagnosis that few avoid. When Kennedy was born, that word made me want to puke. I didn’t want to think about it, I didn’t want to speak about it and I definitely didn’t want anyone else thinking it when they looked at my baby. Even when used in the correct context, I don’t think it’s ever easy to hear that word in relation to one of your children. Still, it’s part of our reality. (Even though we happen to think that Kennedy is one of the 4 most brilliant kids on the planet. ;o)) Darn those IEPs!

SO when we (parents of kids with Down syndrome or other cognitive delays) hear the “R” word being thrown around, used flippantly as a joke, even knowing that the offender most likely doesn’t MEAN to be cruel, it hurts us. It hurts badly. And many times we don’t say anything because we don’t want to risk offending the offender.

I have to say, I have gotten a little more gutsy over the years, but in many cases I’m still chicken. There’s a nurse at Vanderbilt that I STILL wish I would have said something to… but there’s also the pediatrician I fired because of it (and other issues). I’ve had conversations with several friends about it, and just a couple days ago my husband talked to his Soldiers in Afghanistan about it. It’s THAT important.

The “R” word will NOT be used in our household as a way of degrading oneself or someone else. We are educating our children now, in hopes that they will educate their friends… so many kids today STILL use this word in the wrong way. Kids who will one day go to school with Kennedy are hearing it right now from their parents. They’re passing down prejudice, whether they mean to or not. This friend in California is showing that it’s ok to make fun of people with Down syndrome… whether he realizes it or not. And it’s NOT ok. It’s just not.

I hope that what I’ve said makes sense… it’s after midnight and I’m tired and still a little frazzled. I hope that just maybe one person reading this will be touched by this post and realize that I write, not to accuse or condemn, but to educate. I hope that maybe one person who reads this will talk to their children today about this word… and tell them to talk to their friends. I hope that one day Kennedy will be proud of me for helping her, and all kids like her, to be more accepted in today’s world.

There are quite a few blogs out in blogland that have addressed this issue in the past week. As hard as it is for us to hear, it’s even harder to write about. But as advocates for our kids, we HAVE to stand up for them. We HAVE to be their voice. If we don’t do it… who will?


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