Square pegs – a touch of the ‘normals’. #autism
July 2, 2017 § 10 Comments
Photo by Stu Allsop – at RE:collections exhibition 2016 with my installation.
And lo, it came to pass that one day in the later decades of my life I experienced a touch of the ‘normals’.
But please don’t worry – I am quite okay. In fact I’m more than okay. I’m frankly energised in ways I don’t yet fully comprehend.
And again – don’t worry – I haven’t been ‘cured’ of my autism or gone all typical overnight. I am still emphatically me, only I’m suddenly a me with a growing sense that there are others quite like me, rather than me being a somewhat ropey version of you (you – for the purposes of this post being the non-autistic reader).
You see this typicality runs very deep in our culture. It seems to me there’s always a best and correct way of doing things – indeed our whole learning culture depends on such concepts and methods, fathomable only perhaps to a ‘typical brain’. Professional structures depend on this too – in fact typicality is so deeply assumed that I suggest we as modern societies simply don’t even get close to understanding this as oppression. But it so is.
Those of us who experience it simply feel innately faulty – because it is in effect the only kind of template out there, and it covers just about every thing in sight until you get to certain leisure pursuits or the kind of employment where creativity and innovation is prized, and can be self-led. We seem to have a cultural obsession with the conformity implied in ‘getting it right’ and using ‘correct methodologies’. I’m beginning to think this accounts for some of the growing tyranny in schools and professional life of trackable and measurable outcomes, in which a somewhat warped idea of accountability seems to have replaced something more human and, dare I say it, more generous.
Generous and confident cultures perhaps accept more plurality? This is where I hope we can be headed – away from the idea of ‘best way’ and one way, to many ways of doing and being.
Because it’s all right for an older crock like me to grow into herself finally, but what about those coming after me – my own kids included. To use a well worn metaphor I’ve been a square peg in a round hole (without knowing it) and it’s taken decades to discover my square peg buddies.
But I can tell you that when one square peg (autistic) mets another – and when their square-pegged life notes are exchanged – something revelatory happens. You realise that what is needed (and always was) are more square holes. Simple. You may need to build them yourself – but that was it folks. No square holes, visible or otherwise.
Perhaps this is a newly useful if ancient metaphor after all? Let’s try it out.
So – I am after all a perfectly ‘normal’ (autistic) square peg. So is my friend. There are it seems many of us. SO many that we can’t count one another. Society functions on a round peg basis. We need square holes – in the same way that wheel chair users need wheels and ramps.
Square holes could perhaps stand as a visual metaphor for our access needs and the need for access tools to be shaped by us for us – because only we can think in square-pegged ways. If this were to be true and even useful, the steps involved might look like this.
Step one: experiencing a necessary touch of the ‘normals’ in which the penny drops. This world is not designed for me but this doesn’t mean that I am faulty. We need as many of of us out and signalling to one another as possible.
Step two: identifying the patterns of square peg thinkers and how they are disabled and mitigated against via systems which demand round-pegged conformity. This means dialogue about how our brains work in practice in ways we recognise and understand as our own.
Step three: designing, lobbying for & implementing square hole access tools and arrangements in schools and workplaces. Probably many small initiatives connecting where possible – perhaps leading to national programmes which are autistic led.
I put it out there – because growing into yourself is only the inner life hack. We need more autistic thinking to filter into the way we design education and work practices too. Having met some of my autistic square peg counterparts I can assure you that we’re pretty freaking amazing. You’ll want some of that in your school or organisation – if you’re smart you really, really will.
For I am human #autism
June 26, 2017 § 26 Comments
For I am human. (A radical statement to some.)
And I am capable of every human emotion.
Even as I wake some days I am surprised to find this as truth. For I am othered in the collective consciousness which envelops us all.
I have for all of my years, until the last, swallowed my othering whole, so that I did not know myself as myself at all.
Confronted with myself – I found myself a stranger all the more.
But as time eeks out its knowingness I no longer falter, for I find that I am myself (of course I am) and always was that self buried under a false persona.
Stepping out from under it was like tearing off my shadow.
A false persona melded onto a true heart? Yes – I think so. Yes.
A not unsmall quake of tectonic plates.
Now settling. Becoming.
All humans wear a social mask.
All humans tire of one another.
All humans seek solitude.
My humanness is not other – it is a parallelogram of your humanness.
A mirror in which to see yourself (at times).
A mirror which defines our also separations (like a walk or a swim).
Don’t be shocked or surprised.
(And I say to parents.
My existence doesn’t threaten your child, or replace their value.)
I am both mother and babe.
And there is space for all of us.
For we are human.
Autistic leadership.
June 16, 2017 § 1 Comment
I take the entire inspiration for this post from a conversation with my friends and colleagues at ACAT in Berkeley, Brent White, Tanya Coffield and Laura Harrison.
Autistic leadership is both pioneering and not new. Paradoxes are what we do well, and while cultural advances and moves towards social justice bring forth a new cohort of autistic people who seek to lead in their respective fields, autistics have been quietly leading since the dawn of time.
What?
Well, what we can say for sure is that autistics (including self-diagnosed) are now openly assuming leadership because we have to. The very justice we seek in social terms demands it and shapes it in a glorious (if somewhat gear crunching) symbiosis with the aforementioned cultural advancements. Though on all fronts we still have a long way to go.
And here is the rub, we recognise that autistic leadership is required, but we don’t yet know the shape and form it must take because we’re forging it right now on the anvils of our souls.
If that sounds melodramatic consider this; I’m often moved to use the canary in the cage analogy for my own work and those of other autistics I know. As a people we are vulnerable to environmental hazards – as leaders this can be magnified because we must process an extraordinary volume of fast flowing information and translate experience (both frankly energy-zapping in a way that can shut autistics right down) while carrying on responsibly as leadership demands.
We also carry trauma (a particular issue for us all but often complicated by late diagnosis), and can be ‘trigger magnets’, not only regarding our own histories but also that of others in our care. How to hold it all, and survive overwhelm and overload are in many senses not only about developing models but also about intense personal growth (insight based investigations on a virtually doctorate level and of the kind your average allistic would probably have no need for in the workplace). The workload can be incredible and almost impossible to log let alone recompense.
Yet as I suggest above, our leadership is not new. Not. One. Bit. It has simply not been recognised for what it is, or it has perhaps rather been sidelined and appropriated into the mainstream. We have and often continue to lead quietly and even unknowingly, while others seem to make the noise and get the attention. I bet it was ever thus.
But the point is that as a people we shouldn’t be lead by those who don’t fully understand us (a wider societal and historical problem that the individual must wrestle with in the workplace), also that autistic leadership should be acknowledged for what it is – the generator of so much that is good for the whole population and not just autistic people.
Perhaps the main impediment to autistic leadership is not that we must design it in our own image from first principles (though this is true as all existing visible models are allistic) – it is rather that we are not yet believed in as leaders.
This is what has to change in a wider sense, so that we can be freed to make our leadership models and create the support networks to sustain them.
I read so often about executive function for autistics, and the devastating impact of exposure to what I am beginning to call environmental hazards (the sensory world and allistic – socially embedded – expectation). Some autistic readers may feel that ideas about leadership might as well be beamed from the moon for all it has to do with their autistic reality. I have those days too and it’s hard not to admit defeat.
So I acknowledge my privilege while asserting that this is a hard and lengthy struggle for us all. Also that leadership comes in so many forms and can be so varied in scale. Recognition of what we do, on what ever level this may be, could be the start.
Self recognition may have to come first. Seeing others could be the inspiration, which is why I make myself visible. This is certainly how I began my journey with a trip to see my friends and mentors Brent White and Tanya Coffield back in 2015.
This post is for you. xx
Press Release: ¡Buenos Días Dictador! Eight new postmemory paintings by Sonia Boué
June 15, 2017 § Leave a comment
¡Buenos Días Dictador!
Eight new postmemory paintings by Sonia Boué
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Introduction
Sonia Boué is an Anglo-Spanish multiform artist. Her practice is concerned with a legacy of exile, leading to a growing body of work which relates to the Spanish Civil War, 1936-1939.
In 2015 she was recognised by researchers at Tate Britain as a singular voice responding to this history within a British context. Subsequently Sonia featured in a film made by Tate Britain entitled, Felicia Browne: Unofficial War Artist, and in 2016 she received an Arts Council grant for Through An Artist’s Eye, a collaborative project about the life and work of Felicia Browne (who was the only British female combatant and the first British volunteer to die in action in the Civil War).
Artist Statement
“Since 2013, my work has centred on a buried family history relating to the Spanish Civil War.
My childhood and adolescence spanned the final decade and half of the Franco dictatorship, yet the Civil War was never mentioned. This history was silenced for almost 40 years, and subject to a “pact of forgetting” when democracy was negotiated in Spain, following Franco’s death in 1975.
Unbeknownst to me Spain had been navigating an open wound.
My father and my grandparents had been involuntarily separated in 1939, and my father remained exiled in England until his death in 1989.
My practice is now concerned with this inherited memory and the need to confront this history through my work.”
About Buenos Días Dictador
Sonia Boué has created a series of new works about growing up with the invisible shadow of dictatorship. In them she explores the the duality of her childhood, drawing on an immersive painting practice. Through it (and the other branches of her multiform work) Sonia seeks to recover aspects of historic memory (memoria histórica), previously erased by political suppression.
With Buenos Días Dictador, Boué’s previous focus on the narrative histories of the Retirada (Republican retreat from Spain), and British involvement in the Civil War, has shifted to her own memory sites – the return journeys to Spain from England in the 1960s and 1970s.
Her painted responses are conjured scenes (dreamscapes) in which collaged figures plot an upbringing spent shuttling between Birmingham and Barcelona to visit her grandparents. Through these works she examines the fabric of daily life anew.
“The dictator was everywhere, silently and invisibly setting the preconditions of our lives.”
The spirit of these works is nostalgic yet confrontational, employing a juxtaposition of painted and collaged elements as a means of articulating the unspoken. Buenos Días Dictador, forms a visual essay which tweaks at the invisibility cloak of Franco’s rule to ask a serious question; how can we live the life domestic in the face of violent rupture, exile and dictatorship?
In these enigmatic new works the dictator is everywhere and yet nowhere to be seen. Cut-out figures from the period (borrowed from sewing pattern illustrations) are transplanted to imprecise geographical locations. Buenos Días Dictador, is a series of haunting dreamscapes conjuring a surreal and dissonant atmosphere.
Please share with colleagues and organisations where the visual arts, and subjects of Spanish Civil War, postmemory, displacement, and exile are of interest.
Contact Sonia for artist talks, conference papers and performances.
These works are also available for exhibition (8/ 50 x60 cms mixed media on linen).
Words, sensory regulation and autistic meltdown.
June 5, 2017 § 10 Comments
Selfie, taken at Oxford train station while texting Rhi, drinking flat white coffee and squinting at the camera in bright warm sunlight. By the time the train arrived ten minutes later a sudden cold wind had brought on numb fingers.
Occasionally I read autistic blogs and the writing feels remote. Slowly I’m identifying a difficulty in matching words to experience. Meltdowns have been one such area of disconnect, but today, as I prepared to make an overnight journey, words and experience coalesced to bring a new understanding.
A brief essay on words (skip if you just want to read about the meltdown)
I mean words – what are they and where do they come from? I’ve previously described how writing feels like plucking words from the sky. I sense them rather than understand them in a precise manner. Sometimes I get the ‘right word’ but often I don’t, and I have to keep fishing in the clouds. Words are tricksy like that.
Blog posts often appear as shapes, but today I began with a strong impression of words flapping pleasingly this way and that, like washing on a line just above my head. And I wished I could press my face into a crisp bundle of newly washed and dried words, then lay them out in a straight line for the reader. Ta-daa! SO much brain work would be saved by such means.
But words are both like objects to me and frustratingly abstract. It’s a paradox which can frankly hold recognition in abeyance. How do you match experience to words when they are nothing like experience? Since diagnosis a year and two months ago, I’ve had to take it on trust that meltdowns are part of my experience too.
Meltdowns
So what do I experience?
In childhood ‘tantrums’ – were memorable. I gained infamy for my meltdowns, and earned the nick name ‘the earthquake’. But throwing myself around didn’t stand out so much when I was small – fast forward to my late teens and no-one outside my family would have recognised the former earthquake me as me.
Fast forward again to 2017. You’re so calm! people tend to say to me.
As I gradually learn more about myself I see that I do, of course, experience meltdown as a sudden crashing in of functional capacity.
It’s just that I learned to do it quietly – off camera. I never knew just why it should be so hard to get ready to get dressed sometimes, or simply pack for a short stay away from home? The reasons have eluded me until today. Texting my autistic friends revealed to me something I had never known before. My sensory issues are REAL and relatively common for autistics. Alterations in sensory perception can make the texture of almost any fabric an irritant. I can go through an entire wardrobe and find almost nothing my skin can tolerate once in a state of sensory deregulation.
And now that I have made this connection I see that while having a shower can be one of my favourite things, the after effects can be devastating in terms of sensory regulation, depending on air pressure and the temperature in the room. Changes in tolerance can be rapid allowing little time to catch up and react. Often such changes will be entirely unpredictable but at least a pattern is emerging.
I challenge anyone to try getting dressed when showering sets the entire surface of your skin crawling, and the soles of your feet morph from neutral to achy with a side order of grit between your toes. There are no socks on this planet that are right under such conditions. Even the trainers you’ve been wearing for months so that they follow the exact contours of your feet feel lumpy, off balance and just plain WRONG. Go on. Get dressed then. No?
Add little extra pressure – like having to get dressed and catch a train when a minor heatwave just dissolved into a classic British all the weathers in one day – with alternating sunshine and showers. That’ll be the reason you’re a raw nerve by the way, but you’ll find it hard to explain even to yourself how stressful adjusting to contrasting weather conditions can be. No matter! The train won’t wait…
And you can’t casually fling overnight stuff into a bag and go. Hell no! You’ll need a suitcase of options (wot but you’re only going for one night! a helpful relative might say to spur you on.) You’ll feel close to defeat. Oh, and you’re still not dressed. But come on, think about today’s and tomorrow’s clothes while the ache in your bones and the ants on your skin gnaw at your dwindling ability to focus. Your brain registers that you can’t possibly know what to wear tomorrow as this could surely happen all over again.
Okay – can you pull it all together? Want to scream yet?
I’ve been here so many times before – not being able to dress myself (what!?) when sensory circumstances conspire – is a thing I’ve lived with for a lifetime. But at last I begin to discern a pattern – this happens in certain weathers and/or when I have to plan for being away from base camp.
I now see that such crisis’ are the direct result of unreasonable pressures. It’s genuinely impossible to get dressed and pack clothing to accommodate an autistic sensory system while experiencing acute sensory deregulation!
A body which can’t automatically access self-regulation relies on its owner to drive on manual. This forms part of the extra work many autistics must carry out all day every day – many of us without realising it. Daily we micro-manage our bodies with our careful routines and intricate strategies. Time away from base camp requires planning and portable equipment. Acute sensory deregulation and the promise of variable conditions create a perfect storm and blocks functional capacity.
Who knew that this was so? Certainly no-one ever told me. I’ve had to work it out with a little help from my friends.
The relief is incredible! Having autistic friends means I can swap notes and indulge in the kind of sisterly conversation that can stop a potential meltdown in its tracks.
Tomorrow we all meet up in ‘real time’. Yes indeed – we were all getting ready for a train ride to Birmingham to provide feedback on an art space from an autistic perspective.
It’s taken me so long to write this post that at the time of publishing the meeting is done and dusted and we’ve gone our separate ways. But we’re all bound for the same destination. Decompression central here we come!
The deep connective thinking of the autistic mind.
May 30, 2017 § 11 Comments
I began thinking about this post through a personal reflection on the contribution of deep connective thought to innovation within my own projects. My focus (naturally) is this style of thinking within the autistic mind and how it might connect to mainstream culture, yet remain unrecognised as autistic in origin.
The obvious follow on from these musings is that there exists a parallel history to mainstream narratives, one of hidden talent and industry which has powered (and continues to power) just about every area of human endeavour. If our net is cast wider to include the entire gamut of neurodivergent minds, we can arrive at the following statements.
Traces of neurodivergent brain activity form a powerful (yet unspoken) web around the globe and across the ages. This web in past and present times supports all areas of human thought. If we turn this round 180 degrees, it can be argued that there will likely be no area of human thought in which neurodivergent brains are not in some way major contributors.
Steve Silberman traces aspects of this history in Neurotribes – what I present here is a flow of thought from personal experience.
Continuing this train of thought I’m struck by the equal knowledge that enforced conformity permeates modern human societies through a bewilderingly comprehensive array of systems beginning with school, in which neurodivergent minds have been assaulted or abandoned (I speak from experience).
In the area of autistic life – the one I know and will therefore stick to – the hidden nature of our toil has been due to ignorance and stigma. I’m certain this applies to most neurodivergences, but will park this larger topic here (with keys in the ignition) for all those other self-advocates to take for a spin.
Autism as a narrowly defined bundle of ‘impairments’ (seen through neuro-normative lenses) allows no possibility of contribution, let alone a fundamental role for such minds in supporting a mainstream culture. As we say in the UK – that is a bit pants.
But hope is on the horizon. The notion that autistics can be all things, because there are visibly so many ways of being autistic, has (at long last) the potential to flourish with the dawn of the neurodiversity paradigm. More of us are ‘coming out’.
I thank each and every one of these incredible pioneers, because they (you) have allowed an opening up of what it means to be autistic, and therefore how to begin the job of navigating and negotiating space for ourselves.
More elbow room – and the all important validation of public funding – is fostering a growing sense of entitlement (yes – a difficult word) within my soul. I feel entitled to a space in this neurotypically dominated world – and it is impossible to understate what a powerful shift this represents. For more than half a century, my journey through life has never felt truly worthy – a life lived as a failed neurotypical is a hard act to sustain with dignity or joy. Now I sense my basic human worth on this planet less fleetingly and more securely – as the incredibly diverse and rich community to which I belong grows around me, and I focus on the allistic friends who can genuinely value and celebrate my difference with me.
In a professional sense I begin to understand that this space I wish to carve for myself should accurately reflect my input, rather than involve continuing misjudgment on neurotypical terms.
What this does in practice, is allow me to begin to say difficult things. My gratitude to the Arts Council for funding my research is without bounds. Yet my research is uncovering issues buried deep within this organisation’s funding structure which are inherently ableist in assumption and unsurprisingly so. Cognitive dissonance is to be expected as this is pioneering work – Arts Council gives with the hand that holds present knowledge about access for disability, but withholds with the hand that isn’t there yet on autism.
Deep connective thinking will be needed to join it all up in my evaluation document. In recent days I’ve begun to recognise the bot like ways of my brain which is capable of mining and sweeping through certain kinds of information in a highly systematic way. Who knew! I struggle deeply with what is called executive function and am dyspraxic.
My handwriting is crap, I’ll fall off a bicycle, I can’t remember what I had for lunch – but I’m finding I can radically restructure a project, with the combined powers of hyper focus and ‘unusual logic’, in the space of a few days.
I’m living the truth that deep connective thinking can be one of the benefits and joys of the autistic brain – and that we lend this truth (this power) to the workplace. I’m of the firm conviction that we in fact often work harder and longer – because we can (hyper focus) and because we have to – but this tricksy notion deserves a post of it’s own.*
But it doesn’t take much of a stretch to multiply my own example by the many other autistic minds at work (and those barred from work through structural and overt ableism). Take that multiplication back through time and you begin to sense the web I began this post with.
I take huge strength from this notion – and I want us all to feel entitled in the best sense of the word.
If nothing else this is what I wish to pass down to my children.
So here’s to us all!
*This observation is partly founded on the knowledge that we are in many cases asked to work against our neurologies to conform, and that we work overtime to survive hostile sensory environments.
Performance 1. Performance as autistic embodiment and research.
May 28, 2017 § 2 Comments
I’m tempted to leave this video right here without any words.
Who needs words when embodiment is so infinitely more expressive? It’s at such moments that I remind myself that words can only translate experience.
Yet the need to translate is there. Even for myself. I need to process what this powerful embodiment means. Writing helps. But I am minded that my words will exclude some friends and colleagues, while my video does not. I’m increasingly aware of mutism and people who can’t access literacy, as I move forward in my professional life. This matters greatly to me. The arts should not be for verbal and text based cultures alone.
As my Arts Council funded research progresses I’m going deeper into my practice roots, and I’m beyond fortunate to be invited to participate in some research group meetings in the US with my autistic colleagues at the Ed Roberts Campus in Berkeley.
This is a joyful connection of parallel and intertwined experience, and a stepping in (via the magic of FaceTime) to a space where all is shared and understood without the need for translations. We get it. We get each other. This is nothing like inhabiting neurotypical spaces.
I even love autistic group FaceTime in this space, unlike my experience of group Skype calls with neurotypical colleagues which felt more like communicating through a tunnel. There is much food for thought in how to approach such professional meetings with my team in future.
One point of comparison is the way in which neurotypical culture seems to demand a more choreographed approach to connection, which is stressful because you have to follow, keep track and co-ordinate responses. This is all about timings.
Imagine something more free flow in the autistic equivalent – where a gentle game of tag allows each participant to follow their own train of thought aloud, to find out where we intersect. This in turn allows a vantage point on the whole (a totality of shared experience) from which our combined pattern recognition skills can happily forage and fruitfully explode. Such beneficial explosions are what make our programmes and our projects function – they fire our understanding and create new pathways for us.
Nothing could be more exciting.
This has prompted me to dig deep into my back catalogue of video work, and hook up some of my earlier neurological explorations. These early experiments are now emerging as the valuable research material I need to help me conceptualise and express my autistic professional methodologies.
I did not know then that I was laying down the foundations for future professional development. The autistic psyche is wise – but can only be allowed to be so when given free range. This is my learning. This is what I most want to share.
