Perfect storm. #autism

July 20, 2017 § 17 Comments

 

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.

This learning is born of multiple conversations within lived experience.

Predominant neurotypes (PNT) find it difficult to relate to and engage with autistic experience, and vice versa.

It’s becoming clearer to me – the more I dig in – that each and every autistic ‘deficit’, contained within both medical models and cultural stereotypes, can indeed be applied to PNT when viewed from an autistic perspective.

A mirror world exists in which PNT are disabled, and the only difference between us is that of privilege – via cultural dominance/numbers.

This kind of thinking is real. It’s foundation is (as I say above) a lived experience, which finds a powerful echo in the social model of disability.

I’m grateful to Jon Adams and Brent White for their wisdom and council in guiding me towards the clear understanding of the human rights issues at the core of my cultural project.

My thoughts about autism are community inclusive but relate only to personal experience.

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Dawn brings the perfect storm.

And skylights catch droplets in rapid succession.

Yet I am deaf to their timpani.

 

Undoing the stitches of my carefully fashioned…

…tailoring…

I have spoken for the first time of my disability.

 

A  pointed conversation.

 

But what of…

…my ‘intelligence.’

Yes! I say (quite shamelessly).

 

I do have one.

And degrees and so forth.

(Despite scoring zero for I.Q.*)

And, what is more,

I  often soar above you.

 

(The aerial view is our prerogative.

Including the ‘voiceless’ and the more visibly NEEDY.

Sharing a something you can’t reach.

Ah yes – a club of sorts.

Seemingly without a fee.)

 

And perhaps this difference.

Well. It’s irrefutably so.

Is. Also. Your. Disability.

 

The places you can’t go.

 

I am disabled.

DIS-ABLED.

But by what?

And by whom?

 

And.

What (I ask myself).

Does.

My.

Disability.

Mean.

For.

You.

 

Well…

Perhaps.

And. Most certainly.

I can read it.

In the symbiosis of our smiles.

 

And we can act like kittens.

Playing with string.

Until it’s time.

To bring the dead bird in.

 

A trophy to trying.

A cup to greet the day.

 

* My cognitive profile is not measurable as an IQ score.

Soft clothes day. #autism

July 14, 2017 § 11 Comments

Photo on 14-11-2015 at 12.39A brain aches.

But this we know. You and I are different.

We look the same.

And it’s a now you see me, and now you don’t.

Because I am fluent in passing.

This is my great skill. I look like you. I sound like you.

And when I am tired there is an introvert model – on social mode – which  dies inside to flick the switch.

Ridiculously, I walk home quite earnestly desirous of an extra leg sprouting from the top of my head. So that you might see me and know my difference without ingrained assumption.

You tie me in knots with your privilege, because that’s invisible too.

And I long to draw it, that leg. Momentarily, I check my privilege – oozing and sticky as a bag of ripening plums – but who can I offend with such a limb?! No-one. No. I’ll shelter in the bosom of that absurdity.

For each time you tell me it will be alright you deny my struggle.

Alright sounds like hammer.

Which. Pushes. Me. Down.

Alright is a privilege.

Deciding not to get stressed is a privilege.

And just so you know.

Every day is a soft clothes day.

 

 

 

 

We have the power to rebuild… #autism

July 7, 2017 § 10 Comments

Screen Shot 2017-07-04 at 21.04.57I owe a great big wet kiss to WordPress Discover Editor’s Picks for featuring my last blog post, For I am Human, on the 4th of July.

It’s brought me record likes and a lot of lovely new followers. Many have said what a beautiful poem this is – and I’m overwhelmed and surprised. It was written very quickly, but from the heart, which is the bit that counts probably.

The poem’s sentiment seems so blindingly obvious, and yet autistics everywhere know that it SO needs saying. But I’m encouraged by WordPress making the selection, and by all the positive responses.

Even more positivity flows from making something of an experiential breakthrough in the past weeks. Connecting with more autistic people online, and some in ‘real time’ is beginning to have a profound effect on my mental and physical state. I’m becoming truly immersed in an autistic culture and I’m energised in ways I barely recognise.

I’m learning how abundantly right my brain is.

I think this may also be a stage in the process of becoming.

Diagnosis and it’s aftermath was both wonderful and debilitating. Hindsight tends to brim with wisdom doesn’t it, and looking back there was a period of time spent unravelling – leading at times to something near paralysis. I felt trapped in a box of knowingness without any tools to implement my knowledge. The flat pack had arrived but there were no instructions.

There were also pockets of grief. I’d been given a golden ticket, yet I needed to mourn and let go. Overwhelmed by my isolation (being unknowingly autistic is extraordinarily lonely) I reached a natural hiatus – the lack of autistic playmates in my life was an unmet need I didn’t even know I had.

What soul crushed me on occasion, during my first year as an out autistic, was twofold – my revealed identity in the context of a lifetime, and of being the only one of me in the near vicinity. A vast sea of non-austistic humans seemed to swill around me who, however nice they might be, would never truly get me or provide the mirroring all humans need to develop shared identity.

I’ve come to think that being an autistic human can feel a bit like being constantly trolled. Non autistic humans don’t mean to, but by default the majority culture denies and rubbishes our autistic realities  – our inner truths and core perspectives. And this is pervasive.

We’re supposed to pretend and hide who we are to gain a basic entry pass, but stand on constant social trial – doomed either to erasure or failure.

Under these conditions paralysis can be understood, it would take any human extraordinary resources to find a way through. It also takes time to figure it all out.

And, if you’re conditioned to believe your brain is faulty, you can be forgiven for believing that this is mission impossible.

But I don’t think impossible has to be the final word – although spoiler alert – the ‘trolling’ ain’t gonna stop anytime soon.  The huge cultural shifts required to accommodate autistic perspectives are a long time coming, but that’s the big picture. I’m talking micro-climate here, and the ability to ‘rebuild’ our individual lives – which will feed back into the collective.

There are three points I want to draw from recent experience.

  1. Our exhaustions are in part sensory, and in part masking – and are cumulative. I’m learning that these may be lessened when we pass through post diagnosis paralysis and into rebuilding mode.
  2. Rebuilding requires direct immersion in positive autistic cultures. Access to this culture reveals a state of being in which we are not exhausted by human contact and sensory stimuli are more easily processed.
  3. Knowing who you are, knowing that you are exactly as you should be and there are others like you is the battery power we’ve all been missing out on.

Finding that there are others who are so very like me is like realising that my basic search engine is running precisely as it should. Within all our different ways of being autistic there is a core feature that is recognisable. Others will have said this I’m sure, but  yesterday as I strolled amid the honied buildings of my beloved Oxford, it struck me that we autistics are all running the same search engine and that our variety comes in the form of the different the apps which come with our unique model.

You can blame that image on my new phone upgrade – the other recent acquisition to put a bounce in my step!

Good news is, just like the Bionic Man and Woman – post diagnosis – we have the power to rebuild…

 

 

Square pegs – a touch of the ‘normals’. #autism

July 2, 2017 § 10 Comments

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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 § 80 Comments

 

Photo on 20-06-2017 at 16.01 #2For 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

 

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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

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¡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).

 

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