So I talked yesterday about having to have a bit of a cry. I’m going to break that down because there’s a lot of overlap, a lot of pointy jagged things that came together to result in me, sitting on my kitchen floor, crying down the phone.
This is going to be quite long, so reader beware.
The social model of disability
First up – there’s a great explainer on the Scope website. I find this model empowering but frustrating. Empowering, because exposing the fact that most of the barriers I face as an autistic person are man-made means they can be taken down. Frustrating because it means having to convince people that the world they move through was actively designed for them, rather than the natural state of the world, and you would be amazed at the pushback the phrase “It’s all cultural, none of this is real” gets.
For me specifically it’s also more difficult to get rid of the barriers, because a lot of it is fuzzy. It’s simple to point at events that are held in a basement without a lift and say, “You could have designed this better to make it accessible by picking somewhere on the ground floor/with a lift.” It’s much, much harder for me to ask people not to tell lies with a straight face – not least because for some people that’s a process known as “telling a joke”.
By the way, someone asked if that makes theatre difficult for me, and the answer is no: the context is very clear that the people on the stage are telling lies, and we in the audience are not telling lies. Immersive theatre is more tricky, because I default to “everyone’s an actor” and become either suspicious of all interactions or an actor myself.
And so the point here is that, on my bad days, I have interactions I fundamentally don’t understand where people display anger signals that don’t fit with their words, or display non-verbal language that doesn’t align with their tone. Those interactions haunt me and destabilise me.
The fuckin’ patriarchy feat. ableism
Growing up as a boy is rough, and one of the things I’ve struggled with for a long time is asking for help. This isn’t unique to me and my brain: it’s one of the ways I can connect with other men. It’s such a trope that it’s a gag in every romantic comedy I think I’ve seen: the male ego will take a 28 mile detour rather than ask for directions. Around the world in 80 days? Fogg just took a wrong turning out of Charing Cross and, rather than admit his mistake, kept going.
So asking for help, as a man, is pretty hard. It’s not impossible, and we should do it more, but it’s the cultural barrier that I have to get over when I need to ask for help finding pasta in the supermarket.
Now, on top of that, is the reaction I get when I ask someone to explain what they mean when they use a metaphor I’m not familiar with or their face doesn’t match their words. Because then they pull a face that I’m very familiar with: it’s a face that says “I’m talking to a fucking idiot.”
And don’t worry, it’s only there for a second, but I want you to know that I saw it and I absorbed it and I know, that as much as you smooth it over and explain in an over-cheerful voice, the instinctive contemptive reaction you have to dealing with someone who didn’t understand the complex language you used.
I don’t hold it against you. I linked to an explainer from the charity Scope above. Scope used to be called the Spastic Society, and when I was at school “spastic” was a fairly common insult. It’s a hideous word. The charity changed its name, so the kids changed the insult to “scoper”.
There’s such a cultural fear and consequent loathing of disability that I understand how, when you’re brought up in that miasma of shit, your initial reaction to realising the person you’re speaking to is disabled might be contempt.
And that reaction means that asking for your help becomes deeply humiliating, because I have to subject myself first to my ingrained patriarchy that considers asking for help weakness, and then to your ingrained ableism that says disabled people are lesser.
In those contexts saying “Oh, but you’re normally so good/you’re much better than you were” – these aren’t helpful or reassuring. Praising me for working effectively in a world that seems outright hostile to me (and not to you) feels like being encouraged to work harder at passing. I don’t really want to expend the mental energy on passing. I’d really love people to say what they mean, or explain their metaphors, so that I can get on with my life. But since I can’t force that, I’d be grateful when I ask for help that you treat it the same way you’d treat me asking for help getting something off the top shelf in the supermarket. If you reckon it would be a dick move to get it for me and then say, “One day you’ll be tall enough to reach this!”, then you can understand why it’s a dick move to do the same when I ask for help understanding people.
Expectations against reality
The job I’m doing at the moment is the kind of job you usually need on your CV if you want to move into the senior ranks of my organisation. That’s changing, but it’s true. Being bad at it – because many of the interactions are the bad kind above – because of my disability – also means confronting the very real possibility that it is something I’m not going to be able to do, at least in the medium term.
I have never come up against something I couldn’t do.
I’ve always exceeded at any task given to me, and if I’m honest since I joined the organisation I had expectations on myself to climb the ladder. Having to very suddenly work through the understanding that I might not is causing me massive psychic stress. Reducing my expectations on myself is good advice, but not something that can be switched on or off. It’s a process that will probably take years.
This is the thing about microaggressions. You get them all the time, from the world, from people you don’t know, from people you do. And you deal, and then one day someone says,
“I mean, we’re all sort of on the spectrum, aren’t we?”
And you just sort of break.
If you want to keep the peace, as an autistic person, you nod along. But as as an example: illiteracy is a spectrum. We are all somewhere on that spectrum. But if you, an English teacher, said to a 35-year old man who never learned to read:
“Well, I find I struggle with legal texts. We’re all on the spectrum of illiteracy!”
I think we’d all agree that would be a horrible thing to say. It’s true, but that guy is going to struggle with the world in ways you can’t even imagine. So maybe reflect on whether you want to be right, or whether you want to be helpful.
There’s a bunch of stuff here that all came together at the wrong time, and this was a particularly bad episode. I’ll be back to my normal self by Monday. But I think it’s important that I can share this. This thing that I have gives me superpowers, sure. The world isn’t really designed for that, though. It’s like my only method of movement is being able to leap tall buildings in a single bound. Looks awesome, but unfortunately in this world the ground randomly sprouts spikes. Everyone at ground level walks around them, but me – coming in hard from the lower stratosphere – I just slam straight into them.
This is what happens when I hit really hard.