When you get pregnant, suddenly – before you even begin to show – you notice bumps everywhere. It seems the whole world is expecting. Buggies become ubiquitous; you start checking them out, eyeing up the features that would suit your lifestyle (or the lifestyle you think you’ll have). When you become the parent of a disabled child, suddenly you realise disability, too, is everywhere.
In the past, though I never bothered to analyse it, there was, somewhere in my consciousness, a line dividing able and disabled, walking and wheelchair-bound, those who run marathons for charity and those for whom charity marathons are run. In short, I’m ashamed to say, us and them. Even in writing this blog, I imagined it to be from one “normal person” to another, describing the “novel” experience of living with a disabled child (instead, unsurprisingly, many of my readers – and most insightful commentators – could themselves be described as disabled. I am immensely grateful to them and thankful not to have alienated them (yet) in my narrow-mindedness). Now, I don’t know where to draw that line. I don’t even know which side of it I would put myself! Of course there is no such line. We’re all part of a continuum, part of humanity in all its rich, flawed beauty.
I’ve been to a few “special needs groups” with my son. In a way they’re brilliant – a chance to provide the stimulation he needs and to interact with parents with similar experiences in a setting that I know will be accepting, non-judgmental. In another way they’re horrifying, the first step in shutting our kids off from the rest of the world, in a place with different needs and expectations, a separate caste. This despite the fact that the physical, mental and social abilities, not to mention the characters and interests, of the people within them, are of course hugely diverse.
It’s the policy of my local authority to try to educate special needs children, as far as possible, in mainstream establishments. I don’t know if this will work out for my son. I don’t even know if that’s what I want. Would I rather he continued to be sectioned off with others “like him”? Or that he became the odd one out in a pool of “normal” kids? That he received personalised, specialised care or that he learned to cope in a world built for those closer to the other end of the spectrum?
A friend recently directed me to a great article by Ian Birrell (http://www.theguardian.com/commentisfree/2014/aug/08/ny-disabled-daughter-genetic-wonderland-prejudice-medical-advance), in which he discusses society’s “failure to come to terms with disability … the shameful exclusion of so many people who could contribute so much to communities.” My hope is that by the time my son goes to school, our society – myself included – will be more aware, more accessible to and more accepting of the diversity I’m only starting to appreciate. If you see me staring now at a wheelchair now, I’m – honestly – not gawping, I’m just checking out your wheels