So, I posted this thread on Twitter a while back, while I was waiting for my daughter to sing in a concert, and, well, I thought I’d reproduce it here.
You see, the thing that upsets me I think most of all in this #worldwithoutdowns thing is the way that the problem seems to be all about the person with Down’s. My son isn’t a problem. He isn’t sick with it. He doesn’t suffer with it, and yet suffering seems to be the main reason why people decide that a baby carrying a little extra isn’t viable, and why they are advised to start again.
And that’s when I start to get angry. I start to feel that rage inside that burns and makes me stamp my feet and cry that there IS an element of suffering – but that it’s ME when nobody helps me.
When nobody draws alongside me and my son and asks us and asks us what we need so that we can join in the everyday things of life.
He suffers when people laugh at him, or when they can’t seem to see beyond his disability enough to bend their own inflexible attitudes even just a little bit because that’s the way we’ve always done things here.
And I don’t like living with sadness. I don’t like living with grief and loss – but the thing is, if I don’t I subscribe to the idea that we can wipe the tears away as if they had never been, doesn’t that mean that what I want is to live a plastic, a sanitised life? Doesn’t that mean I am afraid? That I am pretending to myself that life is not as it is?
No, it’s not what I thought it was – but I wouldn’t be without it, not for the world. Because without the shadows, without the pain of loss or all those negative emotions that assault me regularly, would I ever know what joy was?
A #worldwithoutdowns isn’t real. A #worldwithdowns is life.
But, after having this post in my drafts for about a week, I think I had a deeper reason for getting it out and putting it here in its entirety. It’s because I have been thinking about selection.
I’ve been busy with my new job (very exciting) and this has made me busily think about selective education. Our government wants to bring back selective education in the form of grammar schools, you see.
Now, I am not alone in thinking this a bad idea. Given what I see in the community around me I don’t see schools open to the ‘brightest’ but the richest. I don’t see children who show everything they are capable of at 11 years old. I don’t see more choice; I see fear and worry and unseemly scrambling over the leftover schools when the selection has taken place.
But more than that, I see a disturbing pattern. I see adults who seem to have forgotten that they, too, are human; that they, too, are subject to the whims of fortune, and that they can no more escape their messy reality, the pain and tears as well as the joy and laughter, as I can. Adults who think that they can somehow select the children they want, the perfect ones (or whatever constitutes perfect these days), and discard the rest, as someone else’s problem.
We tell ourselves we can select for success, but at what cost? What price are we paying for pretending?