Perfect storm. #autism

July 20, 2017 § 20 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.

———————————————————————————————————————————–

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.

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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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