thoughts from a recently-diagnosed autistic queer feminist

Archive for the ‘Words and Concepts’ Category

Quote

“Some bemoan this fact: …

“Some bemoan this fact: “Why does everything have to be put into boxes?” they say. & fair enough, up to a point. But this vigorous drive to divide, subdivide & label has been rather maligned. Such conceptual shuffling is inevitable, & a reasonable defence against what would otherwise face us as thoroughgoing chaos. The germane issue is not whether, but how, to divide”

-Railsea by China Mieville

A Difference and a Disability

There’s a trend – and by and large a well meaning trend, to describe autism as a difference, not a disability. The intent may be to challenge the idea of it as a tragedy, as something inherently bad, as something in need of a cure, as something with no positive aspects.

My autism is not a tragedy. It’s not inherently bad. I don’t need or want a cure and being autistic has plenty of positive sides. And the world is, for me as an autistic person, disabling.

Realising I could describe myself as disabled, and learning about the social model of disability was – and I don’t think I’m exaggerating to say this – amazing. Whilst it came with a tangle of mixed emotions, certainly, it didn’t lead me to believe I lacked the capabilities I had (if anything it gave me more confidence). It enabled me to make sense of much of my life, to make, ask for, and demand changes where I could.

Maybe there are people who live in an environment where being autistic does not constitute being disabled. But to make a wholesale claim that it is a difference not a disability assumes a state of liberation we have not yet reached – and in doing so invalidates the real, lived, experience of those of us living in this distinctly less liberated world.

Autism and Activism #2: Accessibility and ‘Accessibility’

picture of the interior of an art galleryA little while ago I was trying to write a response to an article about children and art galleries. In it I was both arguing that if galleries bore children, then that’s more a problem with the gallery than the child, and also talking about how valuable visiting galleries as a child was to me. And that’s when I began struggling with the post, because when I was talking about making galleries better suited to children, I was thinking of light, noisy spaces with lots of movement, where it was okay to run around and be noisy, where you could interact in multiple ways with the art. And when I was writing about why galleries were such a refuge for me, I was remembering how they were quiet with clear sets of rules that were laid out on signs, and how often staff were, once they realised my interest, happy to have a conversation with me where they treated me as an adult, and it was a straightforward conversation about things, not small talk with all its little tricks and conventions.

That’s not an activist scenario, but I do think it’s a good illustration of how there is often a gap between what we perceive as ‘accessibility’ and what actually makes a space accessible, and how this conflict often hits autistic people pretty hard.

Many people in activist communities have woken up, at least partially, to the idea that accessible means more than just ‘has wheelchair ramps’ but needs to incorporate the needs of people with a wide range of impairments. It’s being increasingly recognised that accessibility isn’t just relevent for disabled people, but for (say) parents, those on low incomes, those with limited transport options and so on, and to look outside these as discrete groups, which is important not least because many accessibility needs overlap

But somewhere along the way, the idea of accessibility has become divorced from actual people and what they need to fully participate and beome an athestic, a vague set of ideas about what an accessible environment is like.

The effect of this isn’t limited to autistic people, of course – an article by a local group about one of their events recently used the term “accessible activism”. The only access to that event was up a flight of stairs – I can only assume that they used the term accessible to mean it was a relaxed, fun environment where you weren’t expected to have a lot of background knowledge or commit to anything big. But when accessibility comes to mean “shiny friendly and cool”, it tends to come with a lot of noise, a lot of structurelessness and a lot of emphasis on the social side – all things which have the reverse effect for most autistic people.

I write this as a call to think about what really does make spaces accessible – and in the next post I’ll be sharing some ideas about what people – both autistic, NT and otherwise – can do to make activism and activist spaces more accessible for autistic people.

 

This is part two of a six part series on autism and activism. I will be linking other post below as they are posted:

Part 1 Introduction
Part 2 Accessibility and ‘Accessibility’
Part 3 Immediate Ideas
Part 4 Getting to the heart of it
Part 5 On the positive side…
Part 6 Looking forward

Autistic?

Technically my diagnosis is Autism Spectrum Disorder (Asperger’s Syndrome) (as well as related anxiety and dyspraxia. When it was confirmed, the Asperger’s Syndrome part took some processing, but I was reasonably comfortable with it. Describing myself as autistic, though, was another matter.

It wasn’t that I believed the negative stereotypes, at least not rationally. I’d been reading blogs such as Ballastexistenz, Journeys with Autism and, more recently, Autistic Hoya, all of which prominently use the words autism/autistic, all written by intelligent, articulate women who if I someday manage to write like, I’d be bloody proud.

And it wasn’t even that I believed that mattered. I hate the idea that people need to prove themselves in some way for me to say “I’m one of you, this is our fight”. I’m not into leaving behind people who don’t meet some arbitary standard, of making intelligence/prettiness/friendliness or whatever some prerequisite for the rights others take for granted. But maybe… maybe I’d internalised some of that.

This is, of course, coming at a time when it is looking likely that in the near future those diagnosed today as AS will (if diagnosed at all – a separate but worrying issue) be diagnosed with ASD. Personally, whilst being mindful that whilst sytems are set up the way they are some people are reliant on it, I couldn’t give a fuck about the DSM. Saying I’m not Aspie because they’re taking it out of the DSM makes about as much sense as saying everyone became straight when they took homosexuality out of the DSM. Nevertheless, it does to some extent inform how we speak, how we selfdescribe, how our communities are defined.

Anyway, something’s changed. I’ve started describing myself as Autistic. Not all the time – if the conversation’s about AS specifically, I’ll describe myself as aspie. If I’m identifying myself purely for that purpose, I’m more likely to talk about AS. But if I’m talking about autism generally, “as an autistic person” has started rolling off my tongue quite naturally.

I’m not sure what happened. It just changed. I guess I got more comfortable with myself.