Wednesday, 24 August 2016

A Little More About Autistic Pride And The Sometimes-Desire To Be Cured

I am mainly posting this so that I don't lose it.  I posted this a while ago in a Facebook group that celebrates and embraces neurodiversity.  I've made a couple of changes to post it here, but it's sustantially what I posted on Facebook.
I'll just make clear.  Autism is part of the neurology of autistic people.  It isn't a thing to be cured.  It's a complex beast - and isn't really a single beast at all.  It is something that contributes to making me the person I am, and that's not a bad thing.  I guess I'm not alone in the feelings I express.  I guess most people with a disability of whatever kind will have had days when they just want it taken away from them.  They may fully accept themselves but still, when passing through fire it's hard to say "Hoorah, I am being burned!"  I accept myself more than I have ever done before.  I do.  As a result I am happier and more content than I have ever been before.  But:

Self-acceptance is compatible with wishing for change.

The Facebook post:
Please read this before clicking the link at the bottom. It contains explanation and a couple of warnings about what I've written in the post the link leads to.

I posted one of my recent blog posts in a group subtitled. "We have our own views too! Autistics speaking for OURSELVES!" I posted it as an autistic person, speaking for herself, an autistic person who at times would love for it all to be taken away.

It was accepted by a moderator and appeared. Then it vanished again within five minutes, deleted by another moderator presumably. I guess that in that group only some view from autistic people are allowed. I guess that autistics are only allowed to speak for themselves if they have a particular opinion.

Otherwise they aren't allowed to speak up. The question was raised by a speaker at Autscape as to whether the autistic community is truly inclusive of all autistic people. Do we really accept ALL autistic people even if they're difficult, no matter how disabled they are, or if (shock!) they dare to have different beliefs, frustrations and worldviews to our own?  A good question, posed by someone who has been a very active part of "the autistic community" for twenty years.  He knows his onions!

On the basis of my experience today I have to say that it can be exclusive and we can cast autistic people into the outer darkness when they don't fit a narrow view of acceptability.

I'm going to share my post here. I know that most will disagree with it. I know it's not a popular view. But that's okay. I expect comments. I expect discussion. I expect both appreciation and distaste. That's fine. It may even be deleted by moderators who feel it's not the kind of thing they want an autistic person to be saying in their group. That is their privilege.

Warning: This post does talk of cures. Of the times when things deteriorate for me so much that quite frankly a cure would be a lovely thing.

Warning two: I do swear in this post. I try not to swear much but I was free writing everything and strong feelings were arising and some language fell out that isn't for sensitive ears.

But of course I'm proud too, and positive and know that a cure is an impossibility and that being autistic is a part of my identity, my human personhood. Sometimes I can celebrate that. Embrace the whole of what it means to be me. I wear an autistic pride badge and an autistic pride bracelet pretty much every day. Because I am proud.

But on the bad days, honesty compels me to say that I would prefer it if all those disabling things could be taken away just as much as I did before I had the word "autism" to help me understand me. On some days, to say it's "a different way of being" or to say "I'm differently abled not disabled" just doesn't do justice to how much of a struggle it is. I am disabled. I am. Yeah, I am different not less. We all are. And I've blogged about that in the past. But sometimes the difference feels overwhelmingly dreadful. And oftentimes it is disabling and no amount of accommodations would ever mean that it isn't.

So that's me. Being honest.
My previous post:

Extra to the Facebook post:

A link to the talk at Autscape, by Martijn Dekker, with a link there to all the slides shown during the talk:

Head to the homepage there to find out more about Autscape.  It's the only event of its kind in Europe and I am completely thankful that I was told about it in time to get there last year for the first time.  Next year it will take place at a different venue.  There won't be all the gorgeous scenery we've experienced for the last couple of years when it was held in Giggleswick, near Settle, North Yorkshire.  I'll be blogging some pictures of the area eventually.
Next year it is, I understand, taking place in Northampton.  So I won't be able to escape for a couple of hours by going up a hill.  But I will be able to escape by popping into the centre of a town where I used to live and seeing whether it has changed at all.  I may even take a picture of the plaque that commemorates the school for dissenting ministers run by Philip Doddridge - some of whose words appear in the pages of The Sacred Harp.  Maybe next year I could do a lightning talk about shape note singing.  No.  That's not quite right:  Definitely I could.  But maybe I would!  Because everybody should know about shape note even though many of them will learn that it's something they strongly dislike.

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