For his part, even though he couldn’t have been more than six, he’d noticed it too. I’m always suprised when people stated, fully convinced, that a child with an intellectual disability isn’t aware of their difference or the difference their difference makes in the wider social community. I’m never sure the motivation behind that belief but whatever it is, it’s a serious mistake to make. He’d developed a set of strategies to deal with the gl-ares (my disabled vernacular, a combination between a glance and a stare) that came his way.
He would look up at the eyes that, literally, looked down on him and he’d flick his hand like flicking a fly away. It worked. Or, when it didn’t he’d skip quickly ahead at his mother, glance up at her face, showing his back to the eyes that gl-ared while looking at eyes that regarded him softly, lovingly. Good strategy. I admit, blushingly, that sometimes I need to see love in Joe’s eyes after I’d seen hate in the eyes of another.
During all this, he never saw me, even when he turned to look at his mother, he never noticed this big guy, rolling along a few feet behind. That’s how intently he looked to his mother’s face for affirmation, for confirmation of his worth. I, however, saw him. I saw the face that others were looking at, a face that somehow seemed to give others permission to beleive that they were allowed to determine his value. People with Down Syndrome simply have faces, but to others that face is a trigger to bias, bigotry and ignorance, a toxic brew. He was just a cute kid with Down Syndrome, that’s all he was. But, that’s not all that people saw.
Then, the light is red, we are directly behind him. He turns, hearing the click of my wheelchair as it comes to a full stop. He sees me and instantly his face turns into a smile, a hand comes up and he gives me a small wave. I smile back and return the wave. Then he looks foward again. Never to look back at me again. Most children on noticing my difference find it impossible not to look back, not once, not twice, but many times, often being dragged away by parents not noticing the drag on their children’s eyes.
I want to be careful with what I’m saying here. That boy, that lovely boy, walking down the street, the one who endured the gl-ares of others, the one who looked and found love in his mother’s eyes, the one who looked back at me with welcome, that kid. Yes he has Down Syndrome, and let’s not kid ourselves that fact informs all of his live, and it will inform it for his whole life. He isn’t a ‘child first and disability distant second’ his disability is wrapped up in his entire experience of being child. He needs to learn how to be a K – Down – I- Syndrome – D.
Every moment he was on the street he experienced what it was to be different. He needs strategies to deal with that difference. Parents of kids with Down Syndrome and other disabilities are often told to pay no attention to the disability, ‘to us he’s just a child’ … well that’s not who he is to the world. He needs strategies to cope and strategies to protect and strategies to confront and strategies to engage … with a world that will see his difference first. Let’s state it clearly, it’s hard to live a “person first” lifestyle in a world that has a “difference first” value system.
Now, I want to be even more careful with what I’m saying next. When he turned and smiled at me. I saw the warmth in his eyes. When he waved at me, I saw the welcome in his guesture. He’s a lovely boy. A really lovely boy. He’s a boy whose experience has been informed by his experience of being different, of having Down Syndrome, but he’s still a boy. He may be a B – Down – O Syndrome – Y, and as much as he needs to be recognized as a kid who experiences the world differently because of difference, he also needs to be recognized as still being a boy.
That boy’s smile was given to me, not because of stereotype. His smile was warm and generous. These are not traits given in a basket entwined with bows by God as a consolation prize for the mix up with the chromozones. It was just a generous smile, a smile that was inclusive. He was a nice kid. Down Syndrome means certain things, but it doesn’t mean everything. I don’t want to give to Down Syndrome what doesn’t belong to Down Syndrome. The kid smiled at me, he recognized my difference, accepted it, welcomed it, and smiled at me.
That simply makes him a B -nice – O – kid – Y.