The social model of social disability

Or: Neurotypiconormativity.

If you've seen my previous posts on the subject of Asperger's Syndrome (and autism spectrum conditions more generally), you'll know I'm exceedingly sceptical of the "science" behind it. You'll also know I'm fond of impressionistic ranting. :) Here, I'm attempting to set out my case in a slightly (but only slightly) less ranty and slightly more objective fashion.

[Mild] Asperger's could be described as a social disability: it hinders effective communication and socialising between those who have Asperger's and those who are neurotypical. And, indeed, that is the main way in which it's "disabling". When Science tries to quantify such conditions, it's taking the side of the medical model of disability - the model which says "Something is wrong with you and needs to be fixed".

I think that Asperger's (like many other "neurological conditions" and mental illnesses) desperately needs to be viewed using the social model of disability - the model which points out that if society happened to be organised differently, your disability wouldn't be a problem - i.e., functionally, you wouldn't be "disabled" (here's a primer on the pros and cons of both models, for those who would like more eloquence). Because, in my opinion, the medical/scientific model not only causes needless distress to the people it identifies as "disabled", but it also, well, just doesn't really make much sense.

Let me explain...

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- The central tenet of an Asperger's diagnosis is this: "your brain is Wired Differently [from those of neurotypical people]".

- Therefore, even if you have improved in leaps and bounds since childhood to the extent that you have learnt (albeit with difficulty) most "normal" social skills, you still have Asperger's - you never grow out of it, and if you exhibited it in your childhood then you will always still have it, even if it no longer impedes your daily or social functioning.

(- Side note: Asperger's does not solely affect your social functioning, but in dealings with neurotypical people it's the aspect that's likely to cause most distress; all the rest is just internal quirks. After all, I lived quite happily for 24 years without realising that I have "impaired (social) imagination", i.e. although I can be quite creative and I write a lot, I can only really invent variations on themes I've already encountered, rather than pulling plots out of thin air.)

- My argument is this: Humans do not come in one-size-only. We all differ from the "template" (and I use the word in a loose sense) in various ways: different height, different hair colour, different nose shape, different IQ, different motor skills. I believe the label "neurotypical" means about as much as the label "brunette" - brown may be the most common human hair colour[1], but it comes in many subtle shades, and it isn't inherently "better" or "more normal" (the latter implying the former) than, oh I don't know, ginger. :)

[1] It isn't. Black is. At least, according to a Wikipedia article with no concrete references (apparently the Wikipedian has a vague memory that it was in National Geographic once). Sadly there is no cute word for "black-haired", so poetic license reigns.

- Furthermore, there are many things problematic about the diagnostic criteria for Asperger's. Each one of the Asperger's traits is also found to some extent among the neurotypical population - it's only when they occur in combination that they lead to the diagnosis of a "syndrome". I reckon that's only to be expected, when everybody's brain must vary infinitely in the way it's wired. We all know someone who's bad at reading people's moods, someone else who gets upset when eir routine is disturbed, someone else who has a remarkable memory for car numberplates, someone else who has a favourite subject about which ey will not shut up... so it's actually quite common for someone who would not achieve a professional diagnosis of Asperger's (i.e., someone who'd be labelled "neurotypical") to score within the autistic-spectrum range on Baron-Cohen's classic test (which is why it's not a reliable tool for self-diagnosis).

- However, the way "Asperger's Syndrome" (and other autism-type conditions) is presented is as a binary distinction. There are only two kinds of brain: "neurotypical", or "on-the-autistic-spectrum". Asperger's is at the high end of the spectrum, near "neurotypical". Except "neurotypical" isn't on the spectrum, because it's on the other side of the binary. Um, the binary between one thing, and another thing that's a spectrum. Yeah. Right. Isn't it likely that "neurotypical" is also a spectrum, going from "outgoing and bubbly" to "shy and geeky" to the point where the "shy and geeky neurotypical" would score highly enough on the AQ test to self-diagnose (incorrectly) as neuro-atypical? Isn't it likely that the spectra blend in the middle to make one big spectrum of just people?

- Well, no, it can't be, because of all that concrete neurological evidence about neurotypical brains and neuro-atypical brains, and the obvious ways in which they're different. Right?

"Unlike many other brain disorders..., autism does not have a clear unifying mechanism at either the molecular, cellular, or systems level." (http://en.wikipedia.org/wiki/Autism#Mechanism)

Right. Okay. So there's actually nothing that researchers can point to in the way of brain structure or brain functioning that says "Yep, that's an autistic-spectrum brain, and that's a neurotypical brain, and never the twain shall meet". This is why my assessment involved not one speck of empirical measurement of brain activity (e.g. MRI scanning), and relied solely on a neurotypical (we presume) clinician chatting with me and interpreting my responses. There's actually nothing that gets around the fact that all through your life your brain is changing, developing and creating new neural pathways with the result that perhaps one day, with lots of hard work reinforcing those brain connections that govern social interaction, the Asperger's child will grow into a neurotypical adult.

And yet they tell me, they told me to my face, that I've "clearly spent a lot of effort learning to function socially", to the extent that I'm "masking who [I] really am inside". In other words, I haven't learnt anything - I'm still a socially hopeless Asperger's case, and any appearance of being friendly, sociable or empathetic is just me blagging it.

Do not we all spend a lot of effort learning to function socially? Do not we all have to mask, to some extent, who we are inside? Do not we all regularly have to swallow down our impulses to be impolite or uninterested or self-obsessed or introverted, in order to make sure the social wheels stay oiled? Seriously. Neurotypical people may find it easier and more intuitive to learn social interaction than Asperger's people, but the way Asperger's is presented borders on implying that all neurotypicals are homogeneous saintly paradigms of effortless social perfection...

- So in essence, this is how Asperger's was discovered:

• Ooh, that kid's a bit odd. So's that kid. That kid too, although at least he talks to people and doesn't just sit in the corner rocking all the time. In fact, he talks a hell of a lot, in a really boring way. How odd he is. He probably has a Syndrome.
• Lots of people have this Syndrome! It causes them not to be able to interact properly with normal people like us.
• This Syndrome must be caused by something in the brain! Let us hypothesise that Normal brains are inherently different from Syndromey brains, and look for what the difference is.
• We haven't found anything in the actual brains yet, but it must be there. And if it's there, that means it'll never go away. What a shame. I'm so glad I'm normal.

(Fun game: substitute in the words 'male' and 'female' for 'normal' and 'syndromey', for hours of weakly-argued, poorly-thought-out satire on social constructs of gender!)

Whereas this is how it's presented:

• We know for a fact that there is something weird about your brain. We say this with a conviction that implies that we've measured it empirically. The weirdness will never go away, and any attempt you make to interact properly with normal people will always underlyingly be inauthentic.

I could live with that diagnosis (although it would be fairly upsetting, see previous post) if it weren't for the fact that it's so obviously based on a medical model of disability (i.e. "if you are not normal, there's something wrong with you that needs fixing, um, except we don't know how to fix it, whoops") rather than a social model (i.e. "the difficulties encountered by people who are 'not normal' are a product of the way our society constructs 'normality', not of an inherent inferiority").

Show me something that's concretely, unchangeably unusual about the wiring of my brain, and I will accept your diagnosis without fuss. Show me that I don't fit into society right and claim it's neurological, and I'll show you something that's wrong with society.