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:

ctv5t8rweaadq7f-jpg-large

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!

 

10 thoughts on “Neurodiversity – Neuroequality: What does this mean to you? What do we want?

  1. Initial thoughts – I’d like to be able to say I’m autistic and not have to explain further. I normally have to go into a long spiel about what it is and how it affects me and I usually make a mess of it.

    An equal world to me would be one where all neurotypes are accepted and people are not forced to conform to the dominant neurotype. Education providers and employers would consider different neurotypes and personality types and would value these differences instead of seeing social/extrovert as the desirable standard It would be a society where the needs of autistic people (and other disabled people) are considered as standard in designing the physical environment – building in quiet spots and places where people can easily escape crowds for example. It would be a society where quiet is as valued and people’s sensory personal space is as valued as their physical personal space.

    I don’t think we’ll ever get a perfect world. My perfect may make the world more inaccessible for others. I’d want cars to have quiet engines for example, but that is hellish for blind people who can’t hear when there is a car coming and know if it is safe to cross the road. The answer is to ban the car perhaps but can’t see that happening unless there is an environmental catastrophe.

    This is a huge and interesting topic, thanks for posting it. These are just a few ideas, I’m sure I’ll think of a lot more to say.I look forward to hearing what other people say

    Liked by 3 people

    • Oh gosh – I love your first part about not having to justify autism all the time! That would be heaven! And yes, your point about adaptations making the environment inaccessible to others is a big issue (Even within autistic communities – hence I have problems with the idea of “autism friendly environment” as some fixed concept) – Please keep your thoughts coming – let’s try to keep this conversation going and develop our thinking/articulation.

      Liked by 1 person

    • I agree there is no such thing as a perfect world apart from considering the individuality ( and needs ) of others and self. No good considering needs of others and ignoring one’s own… as we autistics are expected to do and adapt.. not able to adapt ” just bad luck”… we can’t do that to others either, NT or ND.

      There is so much happening in the world in pragmatic approaches to survival of the planet that we can also use … some countries have implemented a Clean City Law which bans all forms of advertising including video and neo lights etc… Sao Paulo in Brazil was the first to do so and has been followed by many cities and towns in American and Europe. Imagine what a difference that makes to those of us who are super sensitive to visual overload and bright lights as well as the benefits in combatting Climate Change etc.

      I read a report in an Economics based paper that proposed the need for a study on “noise” levels from ” social/leisure” sound systems and how it impacts upon hearing loss. Sure the reason for concern hinges on the ” cost” .. monetary but what if that concern was broadened to consider a preventative approach… such as laws restricting the broadcast or sound systems in public domains. Peoples right to listen to music would not be impinged upon as the use of iPods and such personal devices would be legal. Think of autistic friendly shopping malls etc. especially if lighting also was regulated in a manner that confined bright lights to change/ dressing rooms etc or restricted display areas ( task lighting) instead of blanket approach to lighting and space.

      I’m sure there are other non -autistic-specific environmental aspects of public space for change that prioritises health and wellbeing for all and our planet.. with special attention paid to catering for the usually forgotten disabled minorities . A win win situation .

      Liked by 2 people

  2. I was going to write something but Aspiecat already wrote it! I want a world where people are aware that just because we do things a different way, we are not doing it ‘wrong’, just differently! That there is more than one way, the NT way, and that they should at least try to meet us halfway. Most people seem to still be unaware of neurodiversity. I would make workshops on it mandatory, starting in primary school.

    On a more mundane level, non-phone communication options should be available for all services. E.g. You should be able to email people, and get a prompt reply. Luckily the world is get better in this regard e.g. booking taxis, ordering takeout, but need to expand e.g. doctor’s appointments. AAC should be more acceptable, and not just for non-verbal people.
    Plus a whole load more things.

    Great subject. Am adding to my ‘must write a blog post on, eventually’ list. Which is growing faster than I can ever hope to keep up with!

    Liked by 3 people

    • Yep – compulsory phone communication would be on my list of things that were gone too! And yes – you should write something too! Look forward to reading it (though I know what you mean about the ever expanding list!!)

      Liked by 1 person

  3. Reblogged this on thequestioningaspie and commented:

    Thought it might be good to reblog this as we start a new year.

    So, what’s our Neurodivergent Activism going to look like in 2017? What are we aiming for?
    What are we excited about?
    What are our biggest challenges?
    And how can we support each other?

    All best, and Happy New Year – Q.A.

    Like

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