Believe it or not, I am not given to complaining. Not officially, anyway. I think it must have something to do with my Britishness; I don’t like to make a fuss. Either that or it’s because I’m inherently lazy. I don’t like to have to exert myself. Or maybe it’s because, like many disabled people who find that bits of the world they are negotiating are just not accessible, it’s easier to simply turn away and take my money elsewhere.
Or maybe it’s because there is always a little bit of me that wonders if it wasn’t, somehow, my fault. Getting the wrong end of the stick is entirely possible. I’ve always got half my mind occupied on something else; I live so much in the present moment that things like the start and end of school holidays or bills have a tendency to creep up on me. I’ve damaged my car in the past because keeping an eye on baby meant that I wasn’t keeping an eye on the gate post.
When you have a disabled child, a baby with Down’s syndrome, bearing the blame can get to be a bit of a habit. Your very existence is an insult to some people. The simple act of turning up and assuming you can take your place in the ordinary world, just like everyone else, is enough to get you into trouble. You get used to the difficulties that including you and your funny little family causes other people being your fault.
I find myself wondering if this continued experience of blame hasn’t got a major part to play in my reluctance to make a fuss. Oh, I don’t like conflict, I’m the first to admit that. It makes me uncomfortable in whatever guise it takes. I’m usually the first to say sorry, the first to seek to make amends. It gets tiring though. To constantly live with the cognitive dissonance of knowing that you are actually in the right, that there are even laws that exist to protect you and your child and whose existence has firmly put you there, both feet on the ground, the right side of the line, and yet have people, especially those in positions of power telling you that you are, in fact, in the wrong.
You didn’t ask early enough. You didn’t tell us in time that you would be coming along. You asked in the wrong way; you demanded (rather than begging on bended knee). You were rude. You were weird, strange. And then there is him. He was challenging. He was naughty. He was inappropriate, difficult, dangerous and wrong. And by association, me: bad mother.
It’s funny when you think about it. There is a whole industry out there, raising money, giving grants, running training courses, paying for helpers to make the world, and its activities, accessible for disabled people. And at the same time, there is a whole load of other people, working away to make life as difficult as possible, to throw spanners in your way.
And you know what I reckon? They don’t do it because they hate disabled people or their mothers or their families. They do it because they can’t bear the fact that they got caught out making a mistake, getting something wrong, being the same as all the rest of us; human.
You know, when I make a mistake, given the chance, I’ll say sorry. I’ll admit it and apologise. I don’t feel the need to attack someone else in order to keep the world thinking that I’m perfect, that I never make mistakes. Because, believe you me, one day, someone articulate, with good friends and good advice, despite their disability, will come along and show the rest of the world what you did, and they will all see that the pretense of perfection was exactly that.