Neurodiversity – Neuroequality: What does this mean to you? What do we want?

Two things have popped up on my Twitter Feed today that have got me thinking (more) about the politics of Neurodiversity.

These are the things:

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This was shared by the new online Neurodiversity group “NT Speaks” (@NTSpeaksUK or http://www.ntspeaks.com) and spoke to my own thoughts and questions about the ways in which we sometimes organise ourselves when we want to promote the cause of Neurodiversity – things like large conferences, face to face interaction, public speaking ,social, sensory overload – things that might be exclusionary to many in our autistic/neurodivergent communities, and to my wondering about how we might augment our approaches to be more truly, proactively inclusive.

What (else) could Neurodivergent Activism look like? What else could it involve? How can we make it better?

The second thing was this:

feminist-demands

The 7 Demands of Second Wave Feminism were shared by Prof Celia Kitzinger – a psychologist at the University of York (@KitzingerCelia)

And this all got me thinking about what we mean when we talk about Neurodiversity and ‘Autism Acceptance’. We talk a lot about the kinds of accommodation and adjustment that meet our needs – and indeed that is the legal, bureaucratic, institutional language that we have to use if we want to negotiate access on an individual basis.

But what might real equality look like if we could design the social world how we’d choose, rather than reactively adjusting a neurotypical-dominant world to meet our special needs?

I think for me, a few of the things that this might involve would be:

  • A world where I don’t have to worry about “disclosing my diagnosis” (or “coming out” – which feels a much better description for the everyday business of being openly autistic in the social world) in case people say – for example – I’m “unsuitable” to be a member of the organising committee of a group I care about “because of my mental health.” (this happened to me a little while ago – still hurts!)

 

  • A world where I can “just” be anxious about the possibility of losing my job because it might be inconvenient in the same way that it would be inconvenient for non disabled people – not because I know, and am frequently reminded, that employment for people of my neurotype is an extremely tricky business, that we’re difficult to “accommodate” (without “specialist” intervention and a lot of personal therapy and development) and that only 15% of people with whom I share a diagnosis are in full-time employment.

 

  • A world where children aren’t made to feel that their worth as a person is directly related to (and judged by) the number of friends they have, and how many children come to their birthday party.

 

  • A world where electric hand dryers and fluorescent strip lights are universally banned!

 

There are lots of other things that I’d really like, but I think one of the problems is that we’re always told “that’s just how the world is” or “people are just like that” – our job is to adjust and to fit in – and the job of others is to enable us to do that.

I’m often asked by well-meaning professionals if I think it’s a bad idea to put “too much support” in place for autistic people in education, for example, because “the real world isn’t like that”.

Well, those of us who are autistic, who live as autistic, know that “the real world isn’t like that” – that’s our experience, we bear the scars of “the real world” – we KNOW. But I don’t think it’s a good idea for us to base our politics on the premise that the world is incapable of change (that’s kind of the whole point, surely?)

  • So what would your Perfect Neurodivergent World involve?

 

  • What would Neuroequality look like in your “real world”?

 

  • What are the “big” things (the policy things)? and what are the “little” things (the everyday, mundane things that would eliminate so many of our daily struggles, but that often seem all the more unattainable for their humdrum, routine normality).

I want more ideas!

I want more information to help me articulate in my everyday life what we’re campaigning for!

Help me out!

 

What’s it all about, Aspie?

Why am I writing this blog?

Well that’s hard to say really. If this were “proper academic writing”, I’d present these posts as some kind of fully formed, reasoned argument with a beginning, a middle and an (apparently) inescapably logical conclusion – perfectly internally coherent if nothing else, with a full set of appropriate references, and all ambivalences and contradictions neatly ironed out.

That’s not what this is though, and it would be wrong on many levels for me to present it as such. This is messy – partly as a “work in progress”, and partly because life is messy and full of grey areas and smudges that need to be explored and explicated, not taken for granted – because they have power to shape how we think, what we say and how we live.

We ignore them at our peril.

It’s the thinking, feelings, passions, questions and concerns that are arising out of my experience, as an autistic (Aspie) woman doing a PhD in Social Sciences.

Importantly, I need to say from the outset that it isn’t my intention to “prove” anything – or to add to research about what autism “is”. There is lots of research about what autism “is” – and some of it is really good. What I want to look at is not what autism “is” in any empirical sense, but how what we say about autism actually happens in the social world – the effects of how we talk about autism, and what it might mean for autistic people. So I’m going to try to present thoughts or questions (lots of questions) and invite discussion or development from those who come from other perspectives.

It sounds then, like this blog is about autism – but it’s not really. It’s about power. It’s about asking questions about what we can and can’t say – what “counts” – and what happens to the ideas, words and people made not to “count”

It’s not meant to be a logical progression – it is unlikely to be consistent (Foucault was really onto something there!).

It’s about all the times when I find myself feeling “I can’t say that” –

  • About autism, because to speak out would be to expose and leave open to attack what feels like a vitally important but precarious and vulnerable identity;
  • About human rights, equality and the place of autistic people in the social world because “that’s fine for able people like you – but what about the others?”
  • Or about experiences like being a PhD student – because what if I’m only struggling because I’m autistic, and therefore useless, just not as able as everyone else and bound to fail?

And I want to get at all the times when I hear arguments about social phenomena – about politics, advocacy, campaigning and social change, and find myself thinking “but it’s not like that if you have autism” or “what about autistic people?” I can feel and say these things to myself, and I can get angry that no one outside of specialist autism settings is doing what I want – but instead, I’m going to try to begin to remedy this myself. That way, while the world sees us as simultaneously niche, complex and baffling – too difficult for non specialists to engage with, and at the same time as an ‘epidemic’ that needs to be cured and eradicated, I would hope that I can start to make at least a very few people out there think about us in terms of genuine equality and human rights.

This feels risky. It’s daunting to put something out there when I don’t feel like I have all the words yet, and when I don’t know the answers. It is intensely personal and I risk the possibility that I’m the only one who feels like this – who feels the need to challenge what are beginning to feel like established orthodoxies. It risks that I’ll come across as “a stroppy woman with an attitude problem” (which I could well be) Maybe I am the only one – maybe I should just keep quiet.

But I want the world to be a better place for autistic people, and for other people who feel like they don’t belong, and like society judges them as inadequate or broken (including PhD students!)

  • Not by adjustments or accommodations, which are reliant on the values of others in responding to ‘need’ and are easily taken away,
  • Not because of our similarity to “normal” people (“we may be autistic, but we can organize too/we feel things/ we can care/we can have relationships…” or “but you do so well, you don’t seem autistic”) – that doesn’t change anything about the stigma of “autism”, it just makes us retreat from it.
  • Not based on the arguments that try to emphasise our strengths in order to outweigh our weaknesses (she may be weird but she’s ever so good at Maths) – but because we are human. End of.

 

And I want to see what happens when we try to integrate autism/neurodiversity into the middle of social research, advocacy and change – and all the other things that are talked about around me. This sounds audacious, risky and even a little bit stupid, but I really want to see change in the world for autistic people – and I can’t think that anyone ever encouraged social change by keeping quiet for fear of looking foolish:

“The trouble is that once you see it, you can’t un-see it. And once you’ve seen it, keeping quiet, saying nothing becomes as political an act as speaking out. There is no innocence. Either way, you’re accountable.” (Arundhati Roy)