December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.
I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.
Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.
Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.
The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.
A non sequiter I know.
The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.
So my boxing day was interesting. I spent the day in a blur playing catch up.
Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.
But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.
It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.
So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.
My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!
Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.
So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!
I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.
So my New Year resolution is very different this year. For 2019 I promise not to change a thing.
December 8, 2016 § 14 Comments
It’s been interesting lately. Autistic truths rain down on me and I make progress in my understanding of a fundamental difference – it’s the day-to-day truths that crystallise and move in.
I am at a concert alone because my husband is ill. My strategy to arrive just in time mainly works. I gain a seat at the back (I won’t see my daughter – competition for seats is a ruthless elbow grazer and not for me – but I am near the door). At the last moment I see someone I know, and we talk briefly before she finds a seat. This is okay.
Half familiar faces blur around me. I’m not sure whether to nod, but our eyes don’t meet – so I guess not. I glance at my phone, send a message, and feel the comforting spine of the book I prepared earlier. It takes a minute to notice that the noise is extraordinary. The acoustics in this elegant and lofty church are too good . The babble of voices casually cymbal – in every pew people are talking. For me this is waiting.
But the lighting is gentle and the air is warm, yet still I wrap my legs in a tight knot. How did I never register such tension before? It’s a classic me pose and my hips feel brittle and worn – as thought they might snap.
A man stands before us to make an announcement. He does not understand about voice projection. His underwater mumbling tickles my funny bone and I exchange amused glances with a young woman I realise I do know across the aisle. I’m now in deep peril. Uncontrollable laughter (silent shoulder shakes) could seize me, and so I gulp hard and look at my feet feeling lucky that the woman sitting next to me shows no social interest in me. This is all so random. I sit at the shore it seems.
I am relieved when the choir files in, knowing that I will cry and no longer feeling shame. I have tissues and am prepared – learning to savour this trait and understanding that my tears are a bodily reaction. What I experience is a simple response to stimuli by a hyper sensorially alert nervous system. A system so calibrated that I am highly attuned to danger and emotion – this is the core of my difference and why I can’t shrug off the ‘ordinary’. These are assets as a mother and an artist – I can enjoy my tears. I’m grateful at last.
These voices are exquisite – many on the cusp of womanhood pierce my heart.
I hang in knowing that this will probably take an hour, maybe more (but not by much I hope). More than enough time to get distracted, notice a child playing with her muffler (oh the boredom at that age!) and her mother steadily marking homework with a red biro. Admirable multi-tasking. Discreet too. The kind of hands whose writing could probably stay neat on the deck of the Titanic. Momentarily I envy her, my mind playing over the myriad circumstances under which I lose coordination and descend into scrawl. Indecipherable letters but mine own, now revealed as part of the greater whole.
The other day I imagined the difficulty managing information flow (of all kinds including sensory) and coordinating responses in autism as the want of a traffic cop at an intersection during rush hour.
But it’s always rush hour unless you make it stop. You make it stop by withdrawing to where you can control the flow.
It’s very simple.
But there’s more. I have not bargained for the ultimate neurotypical surprise. The interval! After 40 minutes things stop. What?
People it seems would prefer to have a break from the music they’ve come to hear to talk to one another some more, and drink from an assortment of hot and cold beverages of the type they can have at home! Good God! This is fantastically strange and eccentric.
It goes on. I am blessed. My daughter arrives knowing that I will be at sea, she thinks to come and give me a hug and takes time from the dressing room to swap notes on the hours we’ve spent apart. I tell of my astonishment – the ways of the socially needy! I whisper.
We smile and the room dissolves.
© Sonia Boué 2016
November 23, 2016 § 7 Comments
I’m trying to untangle a conversation. It was a brain ache.
Complex new ideas were being put forward and it all took place on Twitter, which probably didn’t help. I mainly watched and processed as two individuals talked about difference vs disability.
Others joined in expressing first confusion and later distress.
It is indeed distressing not to understand in the context of autism, where misunderstanding can feel like the default position.
How to trust your voice? How to be sure that the more fluid and practiced voices are spouting a version of reality which is true to you? Aspects of what they say might sound familiar – and possibly correct (it will likely be correct for them but what about for you?)
How to hook it up and see if it fits in the moment? Trying to follow such a conversation can feel like the knitting needles clack without you moving them and the garment being made is too tight and full of holes. The wool is scratchy and your nerves are frayed.
The person being challenged in this conversation was autistic, the one challenging identified as neurodivergent unspecified (ND). But clearly not autistic.
I had the sinking sensation that the autistic person was being probed uncomfortably.
No, this person had no ill intention I’m sure. In their eyes they were looking for the “truth” – which is often shorthand for; agree with me and see it my way.
Treating an autistic person like this is an example of not listening. And yet again the autistic person is denied validation and told that they are wrong. They are made to justify their position and told that it is wrong.
The non-autistic person doesn’t understand the position being taken – therefore the autistic person must be wrong because it is too difficult to take a step sideways and ask – how is it really in your world.
This person’s starting point was that they were ND too with the assumption it seemed that we should therefore all be singing from the same hymn sheet. (Personally this is my ongoing frustration with the new terminology we are all currently adopting).
And for a period my timeline was dominated by the ND unspecified person pressing the autistic person on their position. With the suggestion of ableism rising to the surface though quickly retracted.
My only contribution was to ask for respect and attentive listening but this remained unacknowledged.
I am deeply discomforted by this experience and ask is it any wonder that autistic people often fear to speak and that autism is associated with mutism in it’s various forms.
Such experiences confirm that the term ND doesn’t guarantee safe spaces and isn’t always a useful term.
I have also found trusted and willing ears on my many travels – but I wish it wasn’t this difficult in general terms. That autistic people could be encouraged (especially within the growing neurodivergent communities) to forge an identity and to self lead.
It’s not asking much and is actually a basic right.
No one wants the scratchy jumper that doesn’t fit.
September 1, 2016 § 13 Comments
This is about when neurotypical (NT) people over-identify with an area of autistic struggle. If you’re autistic you’ll know exactly what I mean, if you’re NT – I’m not being rude but – I could be talking about you.
Why complain you ask? Identification is surely good?
Well…no actually, I don’t think it always is. In fact, this is something which can get in the way of autistic people being heard properly and fairly accommodated.
Many autistic people experience this over-identification. Often NT people begin to think that they themselves could be ‘a little bit’ autistic, with a matching and equal array of challenges.
It is a natural human response but it must be curbed when it comes to neurological difference.
This is not empathy. In fact this blocks empathy. Such NT responses are acutely demoralising for autistic people because they minimise our struggle.
And today my heart sank a little because…
Yesterday’s blog post about autistic artists and the inherent difficulties within professional structures and systems – including Arts Council England funding application processes – is already attracting the ‘me too’ response.
Autism poses unique challenges, which are not faced by NT people. This truth has to be absorbed more widely.
More specifically, if NT artists find the professional structures of the art world hostile and difficult to navigate, that sensation should be magnified twenty fold to understand the barriers to autistic professional progression.
A core challenge of autism resides in the specific area of social pragmatics, which just so happens to underpin every aspect of managing a career in the arts. Strengths in social communication are pretty much key.
This is why – of late – I consistently use the term autistic, rather than the terms neurodiverse/nerurodivergent in my blogs, because I believe specificity can be helpful in certain contexts. We are part of a larger group who are not ‘typical’, or rather which makes up a neuro-minority for whom existing societal practices and structures are disabling.
Yet we need to signal clearly exactly what our challenges consist of and I would like to try to articulate this the simplest terms regarding a defining and core aspect of our struggle.
The extreme emphasis on, and burden of social communication within an artist’s professional life creates a gross inequality for autistic artists, which operates across the board and at all levels.
I believe that if more NTs can manage the job of empathising with this – rather than imaging that they share in this singular predicament – we will have made progress.
Every glimmer of genuine empathy really does help us move towards action and change.
August 31, 2016 § 3 Comments
It’s been a rum two days.
First, a hateful article in a UK newspaper, which I’m not going to quote or link to. Defamatory language about autistic people can and should be challenged, but traffic denied.
I refuse to amplify ignorant, stereotyping voices, and the suspicion that it was click bait all along settles in.
Second, I find some very old comments on a news feature on my art blog site which relate to my video of February 2016 in which I critique Arts Council England’s funding application process for neurodivergent artists.
Comments which would make any sentient heart bleed.
“I have accepted a residency in Iceland but I don’t think I’ll be able to go because the task of finding funding appears to be beyond me.
I am also neurodivergent. I can’t seem to forward any of my projects because I just can’t overcome my disabilities effectively enough or find the help I need. Today I am literally just sitting crying because I can’t see a way forward…”
And suddenly I find my tolerance at a low ebb. I can’t sit back and say and do nothing. So I begin to Tweet – to various relevant bodies even though we are way after hours in the UK. These are tiny public acts, liable to be missed, and I’m suddenly also sickened by the imposed invisibility of so many of my fellow autistic art professionals. It’s time to get back on my soapbox and make some noise.
August 27, 2016 § 12 Comments
I’m about to plunge into an intense work phase to bring my project to a conclusion. Which is a bit of a jolt, having taken the scenic route for a brief and heady period, to explore the exciting practice of writing poetry as a discipline rather than a purely creative splurge. I’m learning the importance of returning to the words and sharing first drafts with others.
Poetry it seems happens in one’s own mind, on paper and in conversation. How fun is that!
This is a poem which has been hanging out to dry for about ten days. A bit like my first clothes wash at college which shrank in the tumble dryer! The dryer in this case being exposure to critical eyes and new thought. It is now a tighter fit and beginning to take shape.
It is about my relationship to reading (as an autistic, dyslexic) and the fascination I have with a certain kind of vintage children’s literature.
That book is rubbish.
Don’t buy it, she says.
I frown inwardly
But you are calling
I, plunged into
on a landing
or crumpled pillow
between my fingers.
I, held in the author’s
the slow child
who could not
© Sonia Boué 2016
August 23, 2016 § Leave a comment
I’ve had some lovely responses to a fledgling poem called Dead Squirrel posted last week. Since then I’ve been extremely inspired and of course, poetry is fast becoming my new ‘special interest.’ A huge thank you to all of you, and a special wave to Sophie Herxheimer – for a dream crit from a National Poetry Day Ambassador no less! Please catch up with all Sophie’s brilliant projects and achievements here.
I find that although my topics are at present quite varied I’m extremely interested in articulating my experience of being autistic. I can see this becoming a thing. So here is a new poem I’m working on. Again crit is welcome.
The logic of not having any
(on late autism diagnosis)
“The unusually logical approach to life can be both a positive and a negative attribute.”
And in the middle of life, I find
that I am the odd one.
And yet, unusually logical
I spill at the ballet recital,
a concert or a play,
and dumb advertisements,
which cause my eyes to leak.
But I’ll take a scythe
where others linger in the maze,
wasting time and getting lost.
And drum inwardly,
as meetings meander into jolly rambles,
worth horning on our hiking boots for!
Because crisps and sour booze
could all be had at home.
Was that the point after all?
Unusual logic confers
the cross purpose.
And I, rarely finding myself
even on the same pages,
sit and fiddle, playing catch
with my short attention span
until it’s time to leave.
© Sonia Boué 2016