Saturday, 1 October 2011

Some More Thoughts on 'Labels'

As I’ve said before, a diagnosis and the label that comes with it can mean the lifting of burdens, in the form of the freeing of a person from a tangle of low self-esteem, feelings of failure and being ‘stupid’ or ‘bad’ or ‘not good enough’.

But I have to acknowledge that this does depend on the social context in which the person experiences the ‘labelling’. When I accepted that the ‘label’ of Aspergers Syndrome applied to me, it meant (admittedly gradually, as the implications sank in) an end to feeling that I was somehow simply ‘wrong’ or ‘defective’, a sort of mistake on the human production line; certainly inferior, my ‘difference’ something to be ashamed of, and to try to conceal from others. I wished I had known years earlier, and could have gotten help and support instead of being reproached and condemned for my ‘errors’. I have learnt to love my autism, and embrace it as a liberation and a positive identity.

But the aspie/autie community was the deciding factor in this. If I had listened to and read only the ‘experts’, or how autism is commonly portrayed in mainstream media, or even the ‘hate autism’ people, I would almost certainly had my low self-esteem reinforced, seen my ‘difference’ as even more of a ‘deficiency’, a ‘wrongness’, something to be eliminated at all costs. I’d probably have ended up suicidal. But luckily I found instead a supportive and accepting community, people who not only thought, felt, acted and reacted as I did – and who said there was nothing wrong with that, nothing intrinsically wrong with being autistic, while also acknowledging the very real problems we do have.

The era we ‘come out’ in has an influence too. I’ve tried to imagine how my life might have gone if I had been diagnosed with some form of autism as a child, in the 1950s or 60s (possibly ‘mildly autistic’ or ‘with autistic tendencies’). The chances are I would have been viewed as at least borderline ‘mentally handicapped’, and shunted into some sort of ‘special education’, which would have been a gross insult to my intelligence. At the very least, I would have been excluded, pitied, and had it assumed I could achieve nothing worthwhile in life. Opportunities, education and employment that I did later take up, would have been denied me. I would possibly never have got married or had a child. How much more damage this would have done to me, than simply struggling through life on my own the way I did, trying to be ‘normal’, I don’t know. I suspect quite a lot. So the label helps me now, but probably would not have in a less enlightened era, when there was no ‘autistic community’, no ‘neurodiversity movement’, no ‘nothing about us without us’, etc.

This doesn’t apply only to autism. Take for instance my daughter’s years of struggle with maths, which caused her a lot of difficulties in school. It wasn’t until her adult years she discovered she fit the criteria for a condition called ‘dyscalculia’ (I’m not totally certain of the spelling on this word), which is the numbers version of dyslexia, and now a recognised learning disability. It was a relief to her that she hadn’t been imagining her problems. Had she had this diagnosis when younger, and been given suitable help, how much frustration and confusion could have been avoided. At the very least, teachers might not have spent years reproaching her for “not trying hard enough”, or telling her “but you’re intelligent, surely you can figure this out!”

On the other hand, even if she had had this ‘label’, she might have been treated as those with dyslexia were treated then – it’s only fairly recently that the NZ education system formally recognised that dyslexia even exists, and I’m not certain as to the status of dyscalculia. She might have had scorn poured on her, told she was ‘making excuses for laziness’, etc. Her school years might have been even more difficult. She might even have been shunted into a ‘slow learners’ class – which she most definitely was not. So once again, the social context makes a difference.

Over the last thirty or forty years, due to the efforts of the various ‘liberation’ movements, things have changed radically for those who are gay, women, or people of colour. No longer is a black person seen as only fit for menial work, or women fit only to raise children and serve men, and gay people are no longer considered (by most anyway) ‘sick’ or ‘perverted’. But autistic people (and disabled people, and even to some extent many of the ‘learning-disabled’) are still seen as ‘lesser than’, to be pitied, patronised, patted on the head, and – if we do dare try to speak for ourselves - told we should simply shut up and accept what is done ‘to’ and ‘for’ us, because ‘we know what’s best for you’.

It’s now our turn, our time. Time to assert ourselves, to say well actually no you don’t know what’s best for us, to affect a paradigm shift in the public perception of those on the spectrum. To make ‘room’ for ourselves in the world, as other minority groups have done, to create the space for us to be ourselves, in all our glorious idiosyncrasy, and still have meaningful roles to play in the world alongside our NT peers. To be equals, though never, ever ‘indistinguishable’ from those peers.

Let’s do it.

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