For I am human #autism

June 26, 2017 § 1 Comment

 

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 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 § Leave a 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

 

 

 

 

 

Words, sensory regulation and autistic meltdown.

June 5, 2017 § 10 Comments

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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!

 

 

 

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.

 

Networked out? Autism and ‘real time’ in professional practice.

May 22, 2017 § 6 Comments

Socorro LorcaIt’s time to talk networking and how it can work against autistic art professionals in particular. I won’t talk beyond my own experience but I hope what I say can apply more widely. 

SO networking.

From the outside I appear relatively networked in. I have public funding, and I’m a member of an artists’ studios – I have in the past participated in group shows and events from time to time. I also have incredible collaborators and artists working with me on a group project. As I grow into my autistic self and gather congruence in my life I’m making professional relationships which feel safe and sustaining.

But in a wider sense I struggle with networking in ‘real time’.

Professionally speaking, I fall into the category of ’emerging artist’. I’m not really sure what comes next – possibly being an ‘established’ artist. These are subtlties that barely register with me as an autistic person.

But I do know that generally speaking networking is a significant factor in gaining visibility and access to opportunity and the elusive commodity of gallery space to show work in. I’m less bothered about status but more about finding square footage and audiences.

The practice of a certain kind of networking demands being out in neurotypical spaces – often way out of comfort zone. The majority of professional networking spaces can feel out of reach for many autistic artists, though we’re a varied bunch and some us will be more extrovert and confident in public spaces. Nonetheless we are a group for whom accommodations for networking could open up a whole new world. For now it’s a case of suck it up buttercup.

I’ve been inspired in some of my more recent thinking about this by excellent guidance issued by Shape Arts, for Global Access Awareness Day, 2017.

Access becomes an issue the more we must inhabit neurotypical spaces for professional development and visibility. The more one must perform neurotypicality the more disadvantaged, and ultimately networked out we can become. Physical environments can also be too hostile to our sensory integrity, and we lose out doubly.

For the autistic artist whose social vocabulary includes camouflaging neurology there exists a painful dilemma; to get out there and mingle, with all the attendant drain on functional capacity, or defend against it and experience the consequences of remaining networked out in a real and important ways.

Networking is a sometimes I can but more often I just can’t thing. There can be such lovely and genuine people out there, but what I experience is a bewilderingly fast paced array of possible introductions in a vertiginous sea of knowing faces. And they all seem to know something I don’t.

Art circles can be intensely cliquey and competitive too. I can sense this faster than the average person takes to breathe in and out again. I have to be here and play power games? Ugh no.

I recently turned down a very high level networking opportunity indeed, for self-protection. Alienation is bad enough – who wants it with knobs on?!

I do know some autistic artists who would make the opposite call and suffer, and I know ones who wouldn’t make it inside the building.  Either way – they’re all heroic to me. I know what guts it takes to handle this kind of stress.

Each of us has to make that call, and I usually bail, preferring instead to focus on what I can do, and what works for me. I guess this is the point I’m trying to make. Exploring helpful means of being there so that opportunity is not lost, and/or initiating and inhabiting new kinds of networks of opportunity. Working the systems to autistic advantage to locate alternative sites of influence.

I’ve recently tried asking for help with access in an informal yet significant space – my own studios – where networking involves pub meetings. But what would such accommodations look like?

An online forum I suggest, wondering how many other artists with access needs who miss out on these meetings would potentially benefit from such a thing? Associate artists who live out of the city, artists with small children, artists who also have a disability (invisible or not)…anyone who can’t make it to the pub that night…

We do have a space online but it’s pretty dead. So if that’s the space – how to animate it and is that down to me? Should it be? Or should the people who inhabit ‘real time’ feedback online?

I found it both hurtful and significant that of the 40 or so people in the email chain I made my request to, only one eventually responded.

No-one opens those emails a separate friend told me – and immediately I understood that outing myself to a group comprising of plenty of unknowns had been a non-risk. Hah! Talk about an anti-climax!

But these are serious questions – which I think all art organisations should be asking themselves in 2017. What are you doing to be inclusive (especially those with public funding and/or charity status’ to protect) – how are you excluding disabled people through basic assumption? Autistic professionals may be one of the last frontiers for such awareness – but accommodate us and you accommodate many others with access needs, I would argue.

When met with a request for help with access it will be because the person who needs it has been brave and taken a risk – because in this socially risk averse society it takes guts to do this. But unless we say so the playing field is not going to level on it’s own.

The challenge of being clear about who you are as an autistic professional.

May 5, 2017 § 3 Comments

 

without you I would not exist_sonia.Still002.tif.jpgWell I’m very glad to have sorted this conundrum out over the last few days. 

I guess you could say my artist website has suffered from jet lag since my diagnosis of autism in March 2016. I processed my evolving identity as an autistic person through this blog, which has always felt more dynamic to be honest. My website is a little bit ‘best behaviour’ and Sunday dresses – which I guess is it’s function, to show me at the top of my game.

It has a showcase feel about it, whereas blogging is earthy and of the moment, but I’ve come to think that I really don’t need a dinosaur of parked features  which rebukes me from afar.  My blog has raced on, and at times got away with me, but it’s always been about nourishing identity.

It’s a wonderful thing then to have worked it out.

Part of the issue is with the website platform (clunky though familiar) but truly the professional dilemma has been that my work predated my diagnosis, and that I’m known for a specialism which ostensibly is not related to my autistic identity.

The issues have been twofold:

  1. How to talk about autism within a unrelated context.
  2. How to talk about autism without detracting from my topic area.

What this boiled down to was working out how to front load my identity without obscuring my specialist subject. Without achieving this balance I had begun to lack congruence and hence also the growing irrelevance of my website.

And so this half way house wouldn’t wash. Or certainly not for long. I had ended up feeling compromised by, and demoralised with my Sunday dress.

This process of enlightenment has been eased by gaining funding for my own professional development as an autistic artist  – I can’t overstate how incredibly affirming this has been. It’s opened up autism and access as a new and complementary  area of specialism within my practice, and armed me with the confidence I need to focus on becoming more congruent in my self presentation across platforms.

Not wanting to be pigeon holed and dismissed is a valid concern for any autistic, but being professionally out – I feel – is a state of mind no one can mess with. If I know who I am I can communicate this to others more easily.

Sure, there will be those who won’t get it – so be it. Maybe in time they will.

But I must own that this is a privilege. I can’t be sacked as a freelance, though I might lose opportunities and audiences.

SO, I risk becoming a specimen of a certain kind of patronising anthropological interest I’ve come to loathe. Humpf.

No matter.

There’s just no price tag on congruence

If you can be this thing, then I think it’s truly important to do it. There are many ways in which you can assert both an autistic identity and a professional status.

It’s a process and I’m not judging – but the more we do this and more we self-define the more powerful we become. Don’t wait for someone to pigeon hole you is what I say. Get there first and stick it to the wo/man &/or gender fluid person.

 

 

 

All Our Children – a play by Stephen Unwin.

May 1, 2017 § 2 Comments

IMG_1196All Our Children, is a passionate debut play by the director Stephen Unwin, which is based on the true history of the German Nazi euthanasia programme Aktion T4.

No easy subject, dealing as it does with the wilful and systematic murder of disabled children by the Nazi regime – I left the intimate subterranean Jermyn Street Theatre for a matinee performance speechless and shaking, but in a good and important way. We should be shaking, and vowing over our own dead bodies that this should never happen again.

Meticulously researched, this two act play features the little known yet toweringly impressive historical figure of Bishop Von Galen whose opposition to the programme,  through his published sermons, led to Nazi house arrest (1941-1945). Unwin also conjures a small and perfectly formed cast of fictional characters in the suitably claustrophobic setting of a Nazi appropriated clinic office, in which all the action is set.

Through each character we examine our own morality (and potential for activism) in the face of a seemingly absolute and violent oppression. As we witness an ailing and morally compromised Dr Franz at work, on what outshines any bad day at the office you could possibly imagine, we see a man in turmoil as he signs off innocent lives under the slimy and thuggish Nazi administrator Eric. By the end of the play Dr. Franz’s catholic maid Martha has made a journey towards the realisation that disabled children’s lives are of equal value to those she has previously viewed as being more ‘normal’, and thus she redeems the ultimately doomed Franz, inspiring a late resistance in him.

But the heart of the action centres on the intercessions of two passionate and imposing forces for good  –  Elizabetta, mother of a child victim called Stefan (whose nascent  incandescence ignites in Act 2), and the Bishop himself whose dialogue with Dr Franz reflects the care with which Stephen Unwin has researched this material and considered the arguments of the time.

As well he might – for much of the research for this labour of love is a lived experience as the father of an intellectually disabled young man called Joey.

And here is where I make my disclaimer. Stephen Unwin is my friend, and his son Joey has  – without us ever meeting – stolen my heart. This is neither pity nor perversion. I see in Joey (through his photographs) a beautiful and irresistible soul. And what I see in Joey – as an autistic woman –  is a reflection of my own lived experience in a joyful yet often fragmented sensory world.  I sense Joey’s intelligence as other and irrefutably valid, and he has an incredible smile.

This is the dynamic which powers the play – as you realise a father’s love animates Elizabetta and howls a tortured FUCK YOU! to the Nazi regime – just before Bishop Von Galen prepares to enter the stage.

Stephen sent me a copy of the play to read just before Christmas and so I knew what to expect in terms of dialogue and action, yet viewing it on the stage was quite overwhelming for me. The performances of Lucy Speed and David Yelland in particular, as Elizabetta and Bishop Von Galen stood out in a terrific cast. The set is beautifully designed and the theatre is a delight, but this play deserves to be seen on a greater scale.

By coincidence, Stephen sat behind me in this tiny theatre setting, and just before the action began he showed me another gorgeous picture of Joey on his phone. How chilling then to hear Elizabetta describe her boy Stefan, and act out his epileptic seizures. This (albeit fictional) child victim of Aktion T4 would have been Joey had Joey lived under the Nazi regime. There were thousands of Joeys, and by 1941 when the play is set more than 5,000 children like Joey had been killed.

This is a powerful and important work, and a love letter to Joey. Its message is universal and timeless. I do hope you get a chance to see it.

But if you live far away from London  you can buy a copy of the play on Amazon.

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