March 10, 2017 § 25 Comments
Yes, yes, yes…okay, okay. Alright. I boil washed another jumper! It’s becoming a thing – a metaphorical thing.
This post is about access and exclusion.
It’s about a stripy jumper made out of scratchy wool that doesn’t fit. Like that awful Xmas gift (that keeps on itching) – you really don’t want it but you have to say thank you.
And if you say thank you very much for all your kindness but…(insert any variant on a polite – er…it doesn’t quite fit me) be prepared for trouble and even abuse.
This matters because we’re not really talking Christmas gifts where there is less at stake in keeping schtum. Access is about basic equality, and yet ‘social tangle alert!’ It seems we must be grateful and find ways of asserting ourselves which do not upset anybody – unless you fancy a nice slap down that is.
Yes. It is ‘socially’ problematic for autistics to talk about access for many reasons, many of which flow from the fact that we are rarely in a position to lead the conversation.
Firstly we have an issue of system bias (viewing autistics from an non-autistic perspectives which can be erroneous and unhelpful), but also logic is not as strong a suit for non-autistics (diagnostically so).
What seems to matter more at times (judging from a recent negative experience) is that we are seen to be gratefully acquiescent and value effort above possible fit, and therefore not mention our inconvenient discomforts. And here we hit another potential rock. If non-autistics are highly invested in the process (as they must be often to continue with their work) they may feel that they have become ‘expert’, acquiring all manner of specialist knowledge – and they may also passionately believe that they know autism inside and out (and in their own ways they do). I don’t doubt that this can be genuine and I am indeed grateful for their interest and commitment.
Increasingly, (as awareness grows) non-autistics do now in some ways consult autistics about their access needs – and are seriously intent on advocating from primary sources. Okay – so what can go wrong?
It is both complex and simple. Two things; there are many autisms and autism (I’m very much afraid) can only be experienced from within. I can explain my autism to you, and you will understand it from your own neurological perspective. I wish this were otherwise but no.
SO even if the research is done – the resulting material still comes together from a non-autistic perspective and will be presented thus. This is the work of cultural interpretation and translation, subject to the usual problematics of error and potential tone deafness to the language of some autistic native speakers.
This could be justifiable at one time before the advent of the adult autistic self-advocacy movement, which daily gathers strength as a driver for social justice. But it no longer is in my view. Autistics can’t as a group be spoken for ‘because no one else will’. We are here literally crawling out of the woodwork of late diagnosis and we have some serious skills to share.
So when an ally does great ground work and volunteers their time – and even their soul time my appreciation is genuine. But don’t just consult us – let us ‘speak’ (in which ever modality that expression occurs). I say this because ‘speaking’ is not about talking always. And if we challenge you – please listen. Don’t swipe us down. We’ve taken a long time to open up and speaking out can be a huge deal despite appearances.
This week I have been subject to the accusation of condescension. My polite ask for high functioning and low functioning labels not to be used rejected. When I’ve said that autistics I know would prefer to speak for themselves I am told that this is all well and good but that many can’t ‘speak’, and therefore it is up to non-autistics to speak for them.
I had stumbled on perhaps the greatest chasm in the autism world at present – parents of autistics vs adult autistics. Hence perhaps the bitter bile that rose to the throat. I truly wish it didn’t have to be like this. How can we have a decent conversation if dissent leads so readily to insult.
I am a parent too. But I will (by some) of course be accused of having a child too high functioning to count. I am myself too high functioning to count perhaps? But think about who loses.
I refuse such demeaning terms. I refuse high functioning as much as low functioning – it’s opposite number. Low functioning is not a term to describe any person, child or adult in my view. I don’t even want to go there. Would you like it? I don’t go around calling my non-autistic friends high or low functioning normals. See what I mean?
My view is that autistics are complex beings like any other group. As a group our needs vary greatly but we share this characteristic with the rest of humanity. Dignity on all levels flows from supportive language from which to forge identity and define ourselves – this is a universal human need, I would argue. So I suggest that low functioning is a crap thing to hear about yourself, and I say so knowing how painful it was to have my cognitive profile outlined in terms of ‘deficits’ – and that part of my healing from this experience has been to reframe the language I use about myself.
My recent experience (provoked by an unwillingness to just pipe down) signals an increasing frustration with a silencing by other voices in my community. I am accused of thinking I ‘own’ this debate. No doubt I would also be accused of tone deafness to parent’s needs and those of autistics with support needs I don’t share. I don’t think my stance implies either – this isn’t a zero sum game. Adult autistic contributions benefit everyone.
And we as a group (and I as an individual) do want to lead, shape and inform society in it’s betterment of autistic lives. It is said by many and it is said increasingly often. Listen to autistic adults – we can help improve your child’s future world now, whatever their needs may be.
February 17, 2017 § Leave a comment
Brilliance. Another reblog – two in one day. I don’t reblog, have never reblogged but this this GOLD. Autist at Work has written brilliantly about the in-between spaces we find ourselves as artist professionals missing opportunity because we are in no category that is recognised or catered for. A must read for artists and arts professionals and anyone who cares about social justice in the arts.
Our autistic senses are tuned to pick up things, notice things, that others do not, as Rhi@OutFoxgloved wonderfully describes in this post ‘The day my autism saved my daughters life.’ Our always-on, delicate antennae are tuned into everything, so of course we can experience overload in NT environments, and fail to pick up things that seem obvious to NTs. We usually realise too late what someone meant when they were talking, as exact words and actions now sifted and processed, come back to us. In NT environments we can consequently be seen as slow, or uninterested, and underestimated.
Our thinking is immersive, our brains work overtime — whirring intensely and continually processing details coming from our senses, fitting them with our experience and skills, making unique connections. Sonia Boué‘s term ‘brain dancing’ describes this beautifully.
..into the museum
In one of the galleries is an extruded rectangular sheet of thin hard…
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February 17, 2017 § Leave a comment
I never reblog but this is exceptional – in it’s clarity about work accommodations and the disabling nature of unaccommodating colleagues or workplaces. I’m working on this issue myself and so the timing is perfect. Huge TY to Anonymously Autistic who wrote this post.
In an earlier post titled Autism is Not My Disability I said
“Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function. The disability is society’s misunderstanding of Autistic people.”
Although I still agree with my previous statement, I’ve been rethinking this title laity and feel a strong urge to elaborate.
First I want to clarify that there are parts of Autism that are disabling.
We can have mental disabilities, epilepsy, IBS, Anxiety attacks, chronic insomnia, extreme sensory sensitivities, and more. In my mind these things are not Autism – because they differ so widely in all of us. I consider these commodities are unfortunate side effects that Autistic people encounter (too often).
These things ARE true disabilities and are often invisible – so when I say Autism is not a disability, I mean Autism as a way of thinking in…
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December 12, 2016 § 8 Comments
@ Sonia Boué 2016
Angry voices snarl my Twitter timeline.
As usual it is one particular blog post and one particular individual causing the ruckus. Then others catch the bait, and on it goes.
Currently the official vs self diagnosis argument rages – triggering a daggers drawn stand off. It’s genuinely upsetting and frustrating for my fellow autistics. Horrible and unjust for self diagnosed people to be targeted and excluded by an ‘official’ autistic person. I’m staggered really that anyone would do this.
Of course respectful places exist where it is clearly recognised that self diagnosis can often be the only way for people to identify as autistic when medical model options are inaccessible. Official diagnosis in this sense is a privilege, especially as it can cost a LOT of money. I support self diagnosis, and as a formerly self diagnosed person I see it as a necessary arrival and/or staging post. Reaching self diagnosis for many is a prolonged and complex process. Whether official medical diagnosis follows can be a genuine matter of luck and/or finance.
I respect and understand people who don’t trust the medical system to validate their experience as autistics. For women especially, a failure in diagnosis can be devastating. We fall under the radar too often. While ignorance persists this remains a danger.
In whichever order and by whatever means we gain self knowledge and identify as autistic there is one clear fact. Autism is a life long neurological variation on the genome present from birth. In this sense (with the proviso that there are as many expressions of autism as people) we are all the same.
But I want to understand what makes one person reject a cohort of autistics (while admitting that self-diagnosed people can be autistic) as not the same.
Many will be familiar with the arguments – yes, the worry about fake autistics does feature in a big way. To be honest I ran out of steam and the words dissolved two thirds of the way through. The author was not able to hold my attention fully after a certain point. Sorry about that – I did try.
You will always get fakers and trolls. Self-diagnosis is not to blame for this and this ‘benefits cheats’ argument is frankly as thin as the hairs on my head. A tiny minority of people may abuse the opportunity to self-diagnose, but guess what? You can fake an ‘official’ diagnosis too.
I don’t believe that fake autistics are dominating the conversation or that neurotypicals are queuing up to become “special snowflakes” – how dismissive and hurtful to the self-diagnosed individuals who have made it to adulthood to look back on a whole life spent in complete bewilderment. The author has encountered views they don’t agree with among autistic people, and that’s called diversity.
I also submit that late diagnosed and self diagnosed autistics understand very well the following concerns (though we may not have lived them directly)
“We need to talk about how the employment rate for autistic people is devastatingly low.
We need to talk about how the law still arbitrary restricts the freedom of autistic adults.
We need to talk about how it is still legal for some employers, such as the Armed Forces, to discriminate against those with formal diagnoses.”
Some people like to stir controversy and we should think probably think carefully about giving them the attention they crave.
Autism does not reside in a medical report – and this is the point.
I get that the author of these words grew up in very different circumstances to my own. That is obvious from a simple biographical comparison. I was never at risk of institutionalisation or knew my difference it’s true, and on this point I hear them. But I was as autistic then as I am now. And last time I checked this was not a competition – and why would it be. In addition second guessing other people’s childhoods is futile and disrespectful.
There are many ways to raise this question of difference within difference, and I truly wish they had chosen a more constructive one rather than baiting already beleaguered souls. But we know that territorial squabbles are rarely kind and often bloody.
They also tend to be a bit of a dead end. Over and out.
October 9, 2016 § 1 Comment
My autistic friends span across the globe and often can’t come to my shows. I really want to share my most recent work with my community – it’s a project called, Through An Artist’s Eye. We will be uploading our project film at some time in the future – but I’m not sure when. So in the meantime I’ve uploaded a short video with an important message. My work has a strong political undertone, which deals with antifascism. Sadly this remains relevant and appropriate.
October 8, 2016 § 2 Comments
My last post A racy blouse and a bottle of paracetamol was partly about the challenge of presenting material to a roomful of people when sensory processing and co-ordination is an issue.
On blogging about this, I received some helpful hints from a growing autistic network of professional people who are out there making it – thank you my people!
Understanding that it is exposure and practice which ultimately help improve performance made the next experience completely different.
I reflect also on the differences in the spaces into which I was to project my voice on two occasions. How access to a mic, to being elevated on a small stage and to have an audience seated informally, all helped me to gain a sense of flow and fluency. Even the lighting in the room and the journey to the venue were factors which differed greatly in my two recent experiences.
This kind of knowledge is the gold dust of acquiring fluency – you might say it could be the bedrock of a professional armoury. Knowing in advance (where possible) the conditions for a talk could allow for adjustments both mental and physical – and to seek accommodations.
As I absorb the learning from my experiences and look forward to more opportunities to share my work, I return to this poem quickly penned on a train on the way to a recent conference. It’s another way to talk about the above.
until I (being so very disconnected)
lose my toe-hold.
A kaleidoscope of colours,
the fairground whirl.
As an overfilled
narrowly missing horn,
But this is no carpark.
The secret is to be busy,
in this hellish soup
The spoon scraping at
scraps till nerve ends flail.
The point is to distract.
Of course, of course,
And you nod kindly
like a solar powered doggy
in the window.
©Sonia Boué 2016
September 20, 2016 § Leave a comment
Through An Artist’s Eye is an artistic and poetic response to the life and work of British artist Felicia Browne, who volunteered in the Republican militia at the start of the Spanish Civil War, an…