That’s right, there have been times in my past I’m less than proud of; moments when I’ve given in to my baser instincts; when I’ve allowed that bad seed in my heart to germinate and grow into snaking tendrils of the devil’s garden (okay, maybe not quite that bad, but pretty rotten all the same).
Don’t be shocked! I told you right from the start I was no saint. You don’t believe me, go back to my post First Steps and check the fine print. And once you’ve run your eyes through my confessions listed below, I’m in no doubt you’ll agree.
So, every parent has frustrations and irritations. I’m sure you get that. But being the parent of an obviously disabled child brings a whole new set of challenges. And the one irritation that brings out the worst in me is: “What’s wrong with your little girl?”
Seems harmless, doesn’t it? Seems innocent; sweet almost. Can’t you just picture that angelic child standing there, twisting shyly on one foot, finger pressed to her mouth, head slightly tilted to allow the golden ringlets to tumble across her shoulder?
Yeah, that’s what I used to think. And then that all changed.
When The Girl was born, I’d take her out in her pram. For the American audience, that’s a baby carriage. It makes not one iota of difference to the story, but now you know.
So, imagine the scene, if you will: here we are, strolling down the aisles of the Starbucks-sized department store of the small town we lived in, and lo and behold, the afore-mentioned sweet little tot sidles up alongside me to utter those very words, “What’s wrong with your little girl?”
Naturally, I smile sweetly, going as far as dropping to one knee, saying, “Sweetheart, my little girl was born this way. She’s a very special little person and she was born with something special that made her that way.”
Suddenly, the mother, watching on from the sidelines, plucks up courage and steps forward, saying, “What’s her diagnosis?” or “Can you get anything done about it?”
My reply in these situations was usually something saintly, like, “She has a ring chromosome,” and after a brief biology lesson, followed by assurances that I’m happy to answer their questions, I bid them a fond farewell, and move on. Sounds great doesn’t it? Sounds like I’m fully accepting and in control, right?
Don’t be fooled.
Let’s move on to a point in time when this scene has played out no less than 127,765 times, repeated over and over like some kind of Groundhog Day and I’m wondering if I’ve got, Go on, ask me! Printed across my forehead. I’m cruising up and down the supermarket aisles and next thing, the angelic child moves across my path, foot twisting, ringlets falling. My eyes immediately flash up from the pram and narrow on the child. “Excuse me, you’re in my way.”
The mother’s eyes meet mine. There’s a hint of pain in them; a slight furrowing of her brow.
I look back at the kid, who fails to sense the tension and says, “What’s wrong with your little girl?”
The kid’s mother is still watching. There’s a nervous tic in the corner of my eye as I reply, “She was born like that. Now would you mind getting out of the way so I can do my shopping?”
The mother scoops the child up, stroking back her hair like I physically attacked her and glares venom after me as I flounce off down the baking goods aisle.
Okay, from Explanation number 1 to Explanation 127,766, you’ve probably noted a certain downward progression in my response; a deterioration of my outer cool, a hardening of my tone.
Can you blame me? By Explanation number 654 I was walking off muttering, “So when did it become my responsibility to teach the world’s kids about disability.” After that, it was all downhill.
You think this is bad? It got worse. I went from, “Excuse me, I’m in a hurry,” and plummeted into the pure sarcasm.
Here’s a selection of responses I have actually used, and am not proud of:
Small Child: “What’s wrong with your little girl?”
Me: “She didn’t eat her greens.”
Me: “She told me a lie.”
Me: “She ate too much ice cream.”
Me: “She asked too many questions.”
Me: “She gave me backchat.”
When I realized I was fighting a losing battle, I gave up engaging. I tried deliberately looking the other way. Still they came. So I resorted to, “Go ask your mother,” and walking off.
Harsh? Yes. Childish? Doubly so. Satisfying? You can’t even imagine.
Then, one day I realized something. It dawned on me that perhaps something about my demeanour – about the way I presented myself – was actually inviting these assaults. There must have been a twitch, a flinch, a look in my eye that gave these kids the idea that I wanted – no needed – to unload. So I began to simply ignore them. Incredibly, it worked.
Oh, not 100%. Every now and then, I get a kid who stares. There was a period in time when I’d stand there and give them my most evil eye until they wilted under the intensity. Eventually, I gave that up as well. It was embarrassing when they burst into tears and their parents gave me filthy looks.
These days I barely even notice them.
I think that comes with being more comfortable in my own skin. And there’s every chance those kids taught me far more than I ever taught them.