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."


Extranjera said...

I'm at a place (which is where I've possibly always been) where I don't mind Babe's diagnosis including the words mental retardation, intellectual disability, intellectual impairment, mental impairment, even mental deficiency. I think I'm able to do this because I know that they're terms based on an arbitrarily created bell curve that simply gives me a relation to the mean.

When I kick shit up is when this mean is taken to be the same as the 'norm' or the 'desired' state, and when the relation to the mean that best describes my kid in a given moment is used to refer to something annoying, broken, defective, or slow.

So in essence, I only find 'mental retardation' jarring when it's used by a tattooed celebrity to make fun of other celebrities and then not even realize the extent of the hate speech she's engaged in. So yes, my child may be retarded, but who ever said that is anything but a fact, this one thing about her, a part of her being and identity. It is first when we see retardation as something bad and something to be fought and eradicated or pitied and looked down upon, that's when we run into problems.

Ginger Stickney said...

I can understand that place and I get it
. I feel no shame in who Jude is or in her abilities but I do hate the word even in this setting. Perhaps if it wasn't used by tattooed celebrities I could see it without all the negativity that comes with it.

Crystal Rhew Staley said...

I'm with you Ginger. I can't get past the negativity of that word and reading this makes me cry. This word and how it makes me feel makes me cry. And I hate those people for making me feel this way.

Diane Hill said...

I agree with H...they are not a box. They are amazing and perfect. These types of things just hurt my heart so much!