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.

Let's talk about sex(uals)

or: The self-definition problem.

I am immensely proud of my friend Jenni, who is on the BBC News website! Well, in the Magazine section, but that's still nearly news. ;) The article's mostly cut together from her segment in BBC Three's tiresomely-titled documentary "How Sex Works" - she's on at ~18 minutes in, talking about defining as asexual, in her usual articulate and incisive way. Asked to sum up what being asexual means, she helpfully soundbites:

"For me it basically just means that I don't look at people and think 'hmm yeah I'd have sex with you,' that just doesn't happen," says Jenni.

I don't do that either; as someone who defines as asexual (although is willing to consider that actually ey's just repressed ;) ), I've been reliably informed that Normal People Do, so I'm happy with that definition.

But some of my 'sexual' friends (yes, that's the converse of asexual - it means you do experience sexual attraction to people) are less happy. Fair play, they agree, it's a good job of summarising a complex concept in 5 seconds of a BBC Three programme which is mostly about twentysomethings getting off with as many people as possible. But even so, they say, I'm not like that, it's not just about that, I don't objectivise people like that... the unspoken subtext is "I'm not one of those sexuals".

And thus we find ourselves with a fascinating problem: when faced with the concept that asexuals exist and therefore by process of elimination they belong to the group "sexuals", some people suddenly realise that they're not comfortable with the way their group - the majority group - is portrayed in the media.

Usually this only happens with minority groups; one parallel is gay men in earlier decades potentially feeling dissuaded from coming out because of media-based assumptions that all gay men are ridiculously effeminate (Elton John, Julian Clary, Graham Norton, the guy from Will and Grace, Mr Humphries, any character James Dreyfus has ever played). Or perhaps they have come out and then well-meaning(?) friends have said "But you don't seem like a gay... are you sure?" But... you can't not come out as sexual, because the default assumption is that everyone is sexual. And the default portrayal of, well, everyone in the media goes roughly as follows:

ZOMG SEX!

This freaked me out rather when I was growing up, as did the accompanying incessant teen badgering of "who do you fancy? who do you fancy? would you do Jonny Wilkinson? you wouldn't do Jonny Wilkinson? you don't fancy anyone? then you must be a lesbian!", facilitated by magazines like J17 for girls or GQ (which sadly isn't short for "GenderQueer", but I like to amuse myself by pretending it is) for boys. Don't tell me it's not pervasive; don't blame me as a poor confused asexual for thinking you guys are all trying to shag each other right, left and centre (which is, incidentally, a fun party game). I've been reliably informed, remember? By... um... the media! They're reliable, right? You must all be like that! You mean you don't run around rubbing your thighs and panting as soon as you see someone hot? You can't really be one of those sexuals...

And this is why I'm incredibly excited (not like that) to see asexuality (finally) being discussed in the mainstream media. It's not just because greater visibility will benefit all those who haven't yet heard of the label and don't realise that it would fit them, that they're not alone, that there's a lively support network they can access. It's also because those who wouldn't self-define as asexual will be prompted to think more deeply about their orientation, and perhaps start to question the way SEX is dealt with in the media, and perhaps feel less ashamed to speak out as "different" the next time they're stuck in a game of nervous, exaggerated, face-saving sexual one-upmanship with friends who worry that not thinking about sex every seven seconds will make them look "gay". As the article mentions near the end:

The question that fascinates [University of Warwick sociologist] Carrigan is the future effect of a visible asexual community on people who are not asexual. [...]

Right on. But the self-definition problem crops up everywhere: discomfort with giving oneself a certain label because of the people you're then implicitly associated with. For example, until I was nearly in my twenties, I wouldn't have been caught dead calling myself a feminist, because the only "feminist" I'd met so far (protip: she really wasn't one) was a daffy female teacher who was obsessed with putting down men and provoking tiresome arguments about battles that had already been won. I've now learnt more about proper feminism and am proud to call myself a feminist in a bid to reclaim the label, but lots of people shy away from it for similar reasons.

Some deal with it by calling themselves something new (like "equalist"), which doesn't have the baggage of the past, but will never have the weight of history. I've just dealt with it by declaring that my "feminist" teacher wasn't a 'real' feminist - by denying her her self-defined identity. Is that allowed? Probably not; people do similar things all over the place. Another way of dealing with it is to sub-categorise yourself: for sexuals who aren't "that kind of sexual", or asexuals who aren't sure exactly which side of the "line" they are, there are conveniently divisive terms like demisexual and grey-asexual to help you narrow down your potential network of peers even further. Or, just don't label yourself at all... which works fine, until you find yourself labelled by implication ("if you aren't asexual, you must be sexual").

Fact #1: people will always try to label you. Fact #2: whatever label you end up with, you'll always be sharing it with a certain proportion of dickheads. In my opinion, the best thing you can do is choose your labels with care, and then BE AWESOME so loudly that you drown out the dickheads. So, my sexual friends, go for it: tell the world that you're sexual and proud, but that:

"I have never been obsessed with sex. I've not been one to have to go out at night and have to have someone to have sex with, because that's what people do… so I'm not all that concerned about it". [Jenni's partner Tim]

For every "label" you can think of, there are a million people using it who come in a million different shapes and sizes. Our society is starting to recognise inter-group variation to a much greater extent than only a few years previously (adding and accepting new labels like "asexual", "heteroromantic", "genderqueer", "neurotypical"), and this is frickin' awesome, but it's just the beginning. The much-needed next step is to come to recognise intra-group variation: whatever labels we take, we flavour them with our own uniquenesses.

Maybe society will gradually learn to accept that everyone, male or female (or, obviously, anything else), gay or straight (or... etc.), neurotypical or neuro-atypical, sexual or asexual or somewhere in between, is just part of a big lovely spectrum - no, not even that, a big lovely infinite space on twelve axes[1] - of people. A big ask, and hard to keep one's head wrapped around 24/7, so let's keep our labelly crutches for now. But let's never be afraid of them, ashamed of them, or constrained by them.

[1] Yeah I know. Shuddup.

Just Diagnosed: a post-assessment rant

This follows on from Autism: The Extreme Male Chauvinism Theory, and this post will make more sense if you've read that one. For the record, not once in my assessment was my genderqueerness mentioned, not until the very end when I brought it up after the assessor talked about some of my traits being characteristic of "females with Asperger's", and even then she had little to say about it - in fact, wasn't even aware of the FTM/autism research I quoted in the other post.

(What she did have to say was that, although The Research points to autistic spectrum conditions being more common among "males", she's seeing more and more "females" coming to be diagnosed, and had been chatting about this with Baron-Cohen. "Do more research then, I guess," I said. "Yeah, Simon, there's your answer," she laughed.)

Again, this is not a sympathy-post, this is a "this is what it's like, guys" post. If your immediate reaction is to post a comment saying "But that's really sad, cos I think you're awesome!", then a) I love you dearly, b) don't feel you have to bother, and c) I'd just like you to stop and think about why that's your reaction, and what the implications are for all this...

:) xx

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I'm proud of who I am and I wouldn't want to be any other way - if this is what mild Asperger's Syndrome looks like, well then, sucks to be neurotypical, I reckon. A long time ago I decided that "being me" wasn't easy in some ways, but in other ways it made things so much more awesome that it more than made up for it. I wouldn't like to be like the people I don't understand, the people who don't get me, the neurotypicals, I suppose.

But what upsets me is the idea that all the great stuff I have in my head just comes from being on the autistic spectrum... because it implies that all this great stuff will only make sense to 'other neuroatypicals'.

I love looking at the world at a slant, I love taking my big hammer of overanalysis and smashing apart received opinions, I love being able to see that the world doesn't make any sense and it's all silly and arbitrary and ideas like gender and money and, uh, neurological conditions are just random social constructs.

But more than that, I want to be able to explain all this great stuff to other people, tell them my so-crazy-it-just-might-work ideas of a better world. And if it just-full-stop-won't make sense to neurotypical people... then there's no point trying to explain, and there's no argument I can make to say e.g. "binary gender doesn't exist" which wouldn't just come out as "neuroatypical people don't understand binary gender", and there's no hope for my better world, because it's so crazy it just won't work.

This is what I've always feared, since way back when "I might have Asperger's" wasn't a credible reality, it was just my mother's parrotted obsession. I've had periods when I've become upset and frustrated and depressed to think that nobody will ever understand what I have to say; not on my own behalf, because I have an amazing support network of the most fantastic friends I could ever have hoped to meet, but, well, on behalf of everyone else who can't understand, I suppose. I know this all sounds horrendously arrogant, and I apologise, and if you are reading this I fully expect you're the kind of person who can understand, whether you're "neurotypical" or not - I'm just processing all these thoughts within the framework of the classic binary "neurotypical vs on-the-autistic-spectrum" distinction, partly to make the point of how it's total bullshit. But now I'm arrogant and digressing.

So after over a decade of thinking "I might be Asperger's" and understanding all that it entails and watching myself incessantly to make sure I learn, to make sure I try not to be "too Asperger's", to make sure I practise until I can actually connect with neurotypicals and make myself understood... after all that... what has a positive diagnosis done? It's taken away my motivation to try, to learn; it's presented me with the bold fact "Your brain is Just Not Like Normal People's", it's made me give up trying to understand these weird 'normal' people because apparently my brain makeup means I never will.

After years of trying my best to work on my socialising and my communication, in the dim awareness that I might have a neurological condition which hampers socialising and communication, I've been told that, yes, I actually do have a neurological condition which hampers socialising and communication... and so, what's the point of trying my best to work on my socialising and my communication?

I will accept that I fit the diagnostic criteria of mild Asperger's Syndrome. But I will not accept that these criteria make any sense within a social model of disability. Because to do so would be to give up hope. And that would be really, really stupid.