I have found myself again, even though it is not the summer holidays, taking the kids swimming (the pool is a lot less busy). They swim, and use up some of that pent up energy, healthy, even though it is December, and I sit, notebook on table and pen in hand, contemplating Big Questions.
I’m trying not to be distrcted by the sight of my children playing together. There is A, making me wince by his refusal to countenance a new pair of swimming trunks to replace the ones he had when he was two, because he likes the colour. His difficulty in extracting himself from them means nothing to him, clearly. And L. So tall. She makes me goggle at how much she has grown in such a short time. And Sam. I never thought the day would come when he would be swimming and I would be sitting in the cafe, watching him do underwater handstands while nobody bats an eyelid.
There’s always been a bit of a disconnect between my levels of confidence in him and other people’s, you see. R and I have those endless circular discussions about it. He, unlike me, is unused to the role of benign observer; his anxiety levels leap the further Sam gets from easy rescue, communicting itself to others and putting them on high alert too.
Not that I blame him. His anxiety springs from a father’s love for his child. He wants to keep him sfe from harm, to protect him from anyone or anything that might hurt him. He knows his son for who he is; he takes no notice of other people’s impressions.
That’s the thing about Down’s syndrome, or disability in general now that I come to think about it. Everyone has an opinion on it, everyone seems to be an expert, knows what it is, what it means to have an extra twenty-first chromosome. Everyone thinks they know who he is – and when they meet him, nine times out of ten they take their lead from me, or whoever is in charge at the time.
There’s this thing about being a teacher and mixing with teachers and people who love me and my family and tolerantly listen as I rant and rail in my attempts to figure it all out that it lulls you into a false sense of security. You start off thinking it’s all about you. It’s all about your feelings and how learning disability is going to affect your life. After a while, and at around the point where more than your GP and health visitor are involved, you think it’s all about education. It’s about teachers and schools and LAs and training.
And then something comes along to remind you that that isn’t the end of the story – it’s only the beginning.
Because outside of the world of eduation it turns out that it’s not very safe if you have Down’s syndrome or any otherkind of learning disability. If you’re not careful, people might take a look at your chromosomes or your diagnosis or your scary, unrealistic mother, and decide you’re not worth saving.
It’s as if we are saying that we’re all human, it’s what defines us, this animal, imperfect life, this struggle; but not them.
Being human is all very well, but some of us, it seems, are more human than others.