Thursday, November 14, 2013

Check All That Apply

Yesterday Jude was scheduled for an X-ray at a Dr. who is not our regular. As is the custom, I was handed a clipboard bulging at the top with a sheaf of papers. I laid Jude's blanket on the floor, and plopped her down to play with her teething toy. As she cooed, laughed and tried to crawl around, I filled out paper work looking up every few moments to smile at her and chat. She was perfect there before me, her eyes bright and curious, taking in all the new things to see. There was a three day old baby there, and her parents were charmed with Jude who flirted with them outrageously.

And then I came to the section where you have to check all the boxes of medical conditions that apply to your child, and/or any diagnosis that your child has received. It was pretty routine (I've done this many times with four other kids after all) and then there it was: Mental Retardation. And I felt like someone had punched me in the gut. I looked down at Jude and I looked at the box. I was angry. Angry that the Dr. wasn't up with language enough to have the term intellectually disabled or ID. Angry that I had just come off a battle where some celebrity thought it was okay to use a word that had the word "tard" in it. Angry because people keep saying that this word doesn't apply to my child, and that I'm sick awful person for thinking it does.

At that moment, the man of the newborn said "I can't wait until she's doing things like your baby." And those words eased some of the pain I felt at that box. "She's pretty awesome," I said, "And your sweet babe is too. There is so much to enjoy now as well." I didn't say anything about Jue being delayed or that she was going to be considered mentally retarded at this office. I just took the compliment, the feeling that these people wished their sweet babe would be like my sweet babe. Because really this is what it's all about. Jude is human and like us all doesn't fit neatly into boxes created for forms. Created to confine us but also to give something to slop over, to overflow, to break out of.

When we left, I thought about that box for the rest of the day. I thought about the many times people have tried to turn my indignation at the "R" back onto me. How they try to make claims that the word has NOTHING to do with my daughter. How the word is not even used in medical fields any more. How it's just a word. It has no power, it doesn't mean anything. And how incredibly wrong they are. Think about it this way....imagine a word that is used as a racial slur or a word used to refer to homosexual people but is used in a derogatory way. Imagine now if you will that when you go to a Dr's office these are the words you are given to describe yourself or your child. Yeah. It's pretty shitty you know.

Every time you use the "R" word, you are using a word that is used to describe my child. A word that comes with a certain set of characteristics and behaviors. A word that will likely disable my child in a way that her biological condition never could do. When you name your cat "Tard" or your lipstick "Celebutard," you are creating a world when someone out there is going to have check a box that defines a child with a word you use to call people stupid or incompetent. Or as a comment on the way they move their bodies or on the way they appear to others.

The word covers up a human being. It's a label. And when you use it as an insult for a person or a circumstance or a thing you add to the power of the label.

Last night, H and I talked about how I felt and he held Jude close to him and whispered "You are not a box."

Tuesday, November 05, 2013

It's All About Etymology

Oh yes, it's happened again. That ugly word along with its disgusting derivative has reared its ugly head. This time it's a lipstick called "Celebutard." Yeah seriously.  Apparently Sephora and Kat Van D thought it would be a great idea, and they're marketing this lipstick with no end in sight. And of course Kat Van D's response was that those of us protesting were over-sensitive and  that it was just a lipstick. I mean no one likes the word police right? And in addition to that stock response is a bunch of people telling us how we must hate our kids because we associate that word with them. This often involves sarcastic comments of fake pity. Those poor kids living with parents who fight for their right not have to hear slurs about them used by just about everyone. Clearly an awful fate.

Yup, I've covered this ground before, and have no doubt I will again. In fact, I'm even kind of annoyed that I'm having to write about this again. It's been done. Better even then what I'm doing here. But as I was snuggling with my little wee one, I knew that I had to write this to get it out there. It will be my stock response to the ignorance and the volatile that is hurled at me whenever I say "Um...hey could you not use the "R" word please."

I'm hoping that a bit of word history can break it down for those who don't get it. The word "retard" was first used in a clinical setting in the 1800s. It was clearly connected to people who had what we now call an Intellectual Disability. Some other words used in this connection are imbecile, moron, idiot (and yeah I don't use those words anymore either). While most medical fields no longer use the term MR it still pops up on occasion. I read it in more than one piece of literature about Down syndrome when I was pregnant with Jude.

What's vital for this conversation is that this word indicated a certain set of characteristics. In fact, it also marked a way of being in the world. A way of moving the body. An appearance.  These things at some point refereed to people who were put into institutions because they were deemed a danger to society not just because of their actions but because they would "dumb" down to the population (see Down Wit Dat's excellent history of Down syndrome series). And that's the point that I want to emphasis here. The R word came to label people who performed low on IQ tests and were thus deemed "not intelligent." For people who might speak "slow" or move "slow" because they thought "slow."  And by the 60s the word was being slung about as an insult. As a way to indicate that something or someone was not smart. That someone or something was "stupid" or "dumb."

Thus when you or when a company uses the "R" word or the derivative "Tard" they are in fact referencing back to the entire history of the word which means that at some point they are hitting back to people who were medically labeled. We don't use the word because it doesn't mean anything anymore. We use the word specifically because it at some point  referred to people who were deemed intellectually inferior. If the word, had not come to be attached to this idea then it wouldn't be used the way it is used now. That's the problem.

See the thing is is that I KNOW Jude is not stupid. I KNOW that Jude is not intellectually inferior. I KNOW that Jude is going to learn things on her own time table just as we all do and that whether or not it's slower matters jack in the grand scheme of things. I do not look at my daughter and think "retard." Ever. So when you accuse me of thinking that when I see my kid, you're wrong.

You are right that I'm sensitive...maybe even overly so and for that I do not apology. I don't have much patience for slurs of any kind. This word hurts. A minority group is asking that the word not be used. I don't think it's too much to ask that we step away from the word. That we come up with more grown up ways of labeling things. That perhaps we even need to question this impulse to labels things and actions as "not smart." Maybe we need to actually question why so much of goes back to this idea of the "intellect." I'm not promoting an anti-intellectualism instead I'm suggesting we examine our narrow ideas and thus our narrow words connected to such an idea.

It's no joke. Maybe if the world was more equal for Jude, I could step away. But it's not. And when words like this are tossed about with such casual aplomb, it makes it even clearer that we have a ways to go.

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