Labels and semantics

Recently, I engaged in a discussion on Facebook with the friend of a friend. The topic of the discussion was autism. It wasn't unfriendly, but there was disagreement. And I haven't stopped thinking about it since.

The FOAF - let's call her Tanya - is on the autistic spectrum. In the UK, in terms of the Disability Discrimination Act and its associated guidelines, we are discouraged from referring to people like Tanya as 'autistic' or 'suffering from autism'. We are to say 'people with autism'. Because to say that someone is autistic (or diabetic or cerebral palsied or whatever) is to imply that they are defined by their condition. To say that they suffer from autism (or diabetes or cerebral palsy or whatever) is to imply that they are victims defeated by their condition. I mentioned this in the exchange.

Tanya was not impressed.

She referred to herself as autistic. And she had a fairly strong and succint argument as to why.

She pointed out that the very political correctness around the way that labels are used is in itself discriminatory because - and here's where she completely took the wind out my sails - labels that we perceive as not implying any shortcoming are not applied in that way.

We say the slim woman, the athletic man, the intelligent child, the blond woman, the healthy man, the honest child. We don't get hung up on saying things like 'the woman with slimness', the man with athleticism' and so forth.

She also took another stance I found unexpected and interesting.

I mentioned that I have long considered autism to be a spectrum we're all on somewhere.

She didn't like that.

For her, discovering she was autistic was a revelation. It explained why some things were a challenge for her, that came easily to others. Better than that, autism enabled her to do things that other people can't do. She was unique. She was special. And she wasn't about to give up on that to some warm and fuzzy liberal who wanted to paint the entire human race in varying shades of her colour.

Fair point, Tanya. Fair point.
 

Throwing away the labels

I'm sure I'm not the only one who has noticed how there seems to be an increase in the number of people identified as being autistic. Any number of theories have posited as to why this may be. I'm not going into that today. I'm looking at a slightly different angle.

A while back, you might have seen this TED talk by Jacob Barnett. Let me refresh your memory:



I hope you found that inspiring (and a little challenging). But, had it not been for his mother, this lad might never have even be able to function in a socially acceptable 'normal' way. Here's some insight into how this woman threw away the labels, rejected the professional prognoses and adopted a child-led approach to learning.

You might notice during the video clip in the link, that Jacob appears to be slightly uncertain as to how to hold himself when he is being spoken about, but not spoken to. But there is nothing about him that announces that he is a person with 'learning disability' or a 'special need'. In fact, I'd say he's a lot less socially awkward than most fifteen year olds!

I have observed in my own sons - and in myself, truth be told - some markers of the autistic spectrum. None of us has ever been formally diagnosed (or even assessed), but none of us fitted comfortably into the educational model. I only wish I had had this woman's courage when it would have made a difference. In the absence of that, may I encourage parents not to allow labels to become self-fulfilling prophecies. Not everyone can go on to win a Nobel Prize, or even to be predicted to win one. But wouldn't life be so much more fulfilling if we were able to explore the thing that lights the spark in our eyes, rather than the thing some official board says we need to know?