Death of a thousand cuts

(note: this is not actually about death)

Yesterday I popped into the local library in my lunchbreak. When I’m there, I usually have a quick look on the “medical” shelf, to see if anything autism-related has turned up that I haven’t read yet. This is a small library, so I’ve read all the interesting ones, and I don’t bother with the more “medical” ones as they are useless to me. Sometimes libraries rotate their stock, though, so if you’re in luck, something new might have turned up.

So, yesterday I spotted a slim volume on the shelf entitled “Living With Autism”. Huh, I thought, not the best way of phrasing it. It makes autism sound like a chronic illness and the book like one in a series of titles along the lines of “Living With Irritable Bowel Syndrome”. It is putting autism into the wrong category, making it into a condition that needs to be managed, to be kept in check somehow. Of course, I should not have been surprised. It is entirely in line with the prevailing pathologising view of autism, which sees it as a kind of mental health problem. It is not, it is a completely different thing. I don’t know into which category it should be put instead. Probably none – it’s a category all by itself.

Still, the book might contain some good advice. Just like a book on “Living With IBS” will contain advice on diet, lifestyle etc. and guide the reader on how to live their lives while irritating their bowels as little as possible, so this book might give tips on how to live well as an autistic person. I hoped that the book would give tips along the lines of “being autistic, you might find this difficult, but try this trick or that workaround”. Something to help an autistic person navigate life in a world designed for neurotypicals. So, overlooking the slightly iffy title, the book could still prove useful.

Alas, when I took it off the shelf to see the contents, it turned out to be a completely different kind of book. Far from being aimed at autistic readers, it was meant for parents and carers of autistic children. Of course I don’t deny that parents of autistic children might profit from a book of advice for them. But I could think of better titles for such a book: “Raising your autistic child” would be an obvious one. “Helping your autistic child find its place in the world”, or perhaps “Autism in the family” – I’m sure you can come up with your own variation on this theme. But as soon as I realised what kind of book this was, suddenly the title “Living With Autism” took on a different, more disgusting flavour. It makes Autism sound like an unwanted houseguest, something that has invaded your life and that you can’t get rid of. Even worse, because the book is directed at parents, it makes it sound like they are not living with their autistic child, but like their child has become personified Autism. The child is no longer its own person, with its own character, its own quirks, its own individuality, of which autism is undeniably a part – it has become the “disorder” and is entirely identified by it. Presumably it is this mechanism by which the child’s parents become Autism Parents – you know the type I mean. They are not parenting a child, they are parenting Autism. (Disclaimer: not everyone who calls themselves an “Autism Mom” or “Autism Dad” is such a person, I am talking about a generalised type of parent here.)

Granted, the book might not be half bad. I don’t know, I couldn’t bring myself to read it. It might well contain some good advice. Even the title isn’t that bad. You know what they mean, and you could easily shrug it off as something clumsily worded. Except this time I couldn’t. Recently I have become extra sensitive to these tiny slights. Suddenly they crop up everywhere. In themselves they are harmless. It’s just that taken all together, they create an atmosphere of hostility towards autistic people. Maybe hostility is even too strong a word. It’s more a kind of disdain, an “othering”, a distancing, a designation of autism as deviant from the “normal” and therefore something vaguely “bad”. I think this is what is now termed a “micro-aggression”, something that is not overtly hostile, but a little pin prick, a small paper cut, a carelessness and a laziness of thought. (By coincidence, while I was working on this post, Laina posted something about micro-aggressions as well. It’s a post with a different slant, but I recommend you read it.)

Let me give you a few examples of what I mean. A micro-aggression happens every time someone says “I bet she’s on the spectrum” as a shorthand for “she’s weird and annoying”. It happens every time an “expert” holds forth about autism without having talked to any autistic people. It happens every time someone says “I’m so sorry” on hearing that you’re autistic. Or “you can’t be autistic, you’re so normal”, or any of the other things you can find under the heading What Not To Say To An Autistic Person. It’s in every tasteless joke, every lazy and stereotyped portrayal of an autistic person on television. It’s the implication that autism is a disease, a disorder, a mental health problem. And suddenly I notice it absolutely everywhere.

I’ve been watching a lot of “Criminal Minds” lately. I have several seasons on DVD, and I love that program. It firmly puts the BS back into Behavioural Science, but I don’t care. If you know the series, you will know that one of the characters, Spencer Reid, is set up to be, well, “a bit unusual”, to quote something that was once said about me. It’s not just that his IQ is off the chart and that he has more PhDs than you and I have had hot dinners, it’s also that he is interested in weird and geeky stuff (Star Trek! Doctor Who!) and doesn’t always know when the others want him to stop talking about a topic. Many fans entertain the theory that Reid is in fact autistic. I’m an agnostic on that matter, and it’s not relevant to the point I’m trying to make here. Suffice it to say that he’s a bit different, and that this is the cause for quite a bit of good-natured teasing and serves to amuse the viewer, which is all fair enough. But sometimes it shifts into something else. In an episode I just saw, the FBI team gets called in to help with a case in San Diego. To make sense of the case, they have to sift through the piles of paperwork the San Diego detective has compiled over the years, which, as Reid points out, are at least well organised. So there they are, Reid and his colleague Morgan, ploughing through mountains of files, when the following bit of dialogue ensues:

Morgan: “You’re not enjoying this, are you?”

Reid: “I like a good paper trail. I find it meditative.”

Morgan: “Is it really that hard for you to be normal just one time?”

This last line is not delivered in a joking manner, with a smile, it is said in a completely serious and slightly exasperated tone. It says “it’s okay for you to be different when we’re all relaxed and up for it, but not now.” It says “if you just put in a bit of effort, you could be normal and stop annoying us with your weirdness”. It says “you’ve revelled in your difference for long enough, it’s time to pull yourself together and conform”.

I know, I know, this is another example of me reading too much into some harmless words and being over-sensitive. But if Autism Awareness Month has done anything for me, it’s this: I now see this stuff everywhere. On the surface, difference and diversity is tolerated. After all, we are a civilised society, we don’t ostracise people for being different. But under the surface, difference is still looked at askance. It’s not openly policed, but it’s fair game for tasteless jokes, expressions of astonishment that anybody would want to be different, and disbelief that people are not different purposely to annoy others. And if you really want to be different, go ahead, but preferably Not In My Back Yard.

Perhaps you are familiar with the Everyday Sexism Project. People started submitting their experiences of everyday instances, little and not so little, of sexism to the website, and they piled up and up and up. I’m pretty sure if someone started a similar “Neurodiversity hostility” website, the tales would pile up in a similar fashion.

“Micro-aggression” is an apt term for these instances, because they are not big acts of hatred. They fly under the radar. One by itself is insignificant, harmless, just like a little papercut. Yes, it stings, but it is soon forgotten. But then you suffer another, and another, and eventually you are bleeding from many cuts all over the place. And that hurts.

Am I being over-sensitive? I don’t think so.