I haven’t talked too much about Down Syndrome since Cop was born. I don’t want to be boring, there is more to our lives than this diagnosis, but I don’t want to ignore it either. It doesn’t define us, but it certainly influences us and the way we live in the world.
I would imagine if you are already reading my blog you aren’t my target audience with this one, but here goes.
Josh and I are lucky, I think. The R word was not a word we had to remove from our vocabulary because it never had a place there to begin with. But believe me when I say, I understand that’s not true for everyone. Where I work, in this part of the country, this word is a colloquialism for things that are absurd, unacceptable, undesirable or just plain no good.
Think of the last time you heard someone say “That’s so retarded.”
I bet they weren’t talking about something that was growing or developing slowly. They were talking about something they thought was stupid. Something they thought was wrong.
People will say “I didn’t mean it” or “Don’t be so sensitive” or “It’s just a word, you know what I mean”
I’ll be honest, this was a term I found offensive before we had a developmentally disabled child, but I never spoke up about it. I’d gloss over it, move on, I didn’t want to put up a fight.
Now when I hear it, it’s hard to explain, the word alone feels like a slap in the face, a punch in the gut. I can feel it. I wince, I cringe, I recoil.
It’s marginalizing in the worst way. It carries a negative connotation and years of unpleasant history and it strips people with mental delays of their individuality, instead pigeonholing them in this one box.
The hardest thing for me about having a child with Trisomy 21 isn’t the delays, it isn’t the therapies and the doctors visits, it isn’t the health issues. We can work hard and muscle through all of those things. The hardest part is the unkindness of others. Knowing that one day, I won’t be there to speak up for my child, that some ignorant piece of shit is going to be rude and hurtful and there isn’t going to be a damn thing I can do to protect my son from that.
But today is not that day, I can speak up now. I can show both my sons that the ignorant, rude and hurtful are the ones who deserve our pity, not the other way around. I can show them (even if I want to yell and scream and rage) that this is a teaching moment. This is another way Cop has made me a better, braver person.
And it does take bravery. Because even now, with the sting of the word on my cheek it’s hard to muster up the courage and think of the best way to ask someone:
“Please don’t use that word”
It’s just a word to you, if that’s true, then please find another one. Because it’s more than just a word to us.