Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

October 12, 2018 § 16 Comments

Sonia Boué, artist performance image.

Sonia Boué – process image for a forthcoming performance piece.

I acknowledge my privilege – I am enabled to give in my art practice. How many autistics are excluded? Process image for a forthcoming performance piece. 

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Giving is getting.

Yes – I’m talking power dynamics and socially embedded disadvantage.

My thoughts flow from a series of encounters.  Most notably a comment about ‘functional’ language in autism. Neuro-normative culture misinterprets autistic expression.  It tends to frame what is considered  ‘functional’ through the lens of its own (culturally dominant) social orientation.

Dominant cultures tend to make pathology of what they perceive as ‘other’. For example, not recognising language acquisition on its own (collecting and repeating words) as functional because it seems to serve no obvious ‘social’ purpose.

Neuro-normative hegemony has it that a child of a certain age ‘should’ talk about their day, their friends, and so on.  Within this framework of understanding, building a vocabulary relating to a ‘special interest’ would probably not be considered  ‘functional’ even if it is a shared (and joyful) activity (ie between parent and child).

To the neurodivergent eye (and heart) these interactions (based on repetition) can appear intensely social. They form the back and forth of call and response. Word acquisition can be a joy in itself, which can be shared to the point of deep bonding. It’s all a case of tuning in.

But neuro-normatism (if I may call it such) doesn’t meet autistics even quarter way, and there’s a deep lack of welcome for ‘otherness’ which kicks in early.

Thinking about autism as a culture (rather than a medical diagnosis) strips back the skewed deficit models that neuro-normatism imposes on us.  It breaks my heart to think that what so many neurodivergent children experience is – simply put – a lack of welcome. All because our ‘receiving culture’ (neuro-normatism) fails recognise us as a minority culture.

But, we are far greater in number than anyone knows. I knew this the day I began to recognise my own autism because I had been party to a major historical blunder about what autism is. Figures vary greatly depending on the source, but daily ‘ordinary’ citizens are discovering their autism. This trend will continue as more of us gain access to the right kind of information.  We’ve been mislead on autism since the term was coined by Leo Kanner in 1943 to describe only the most visible members of our tribe.

A welcome – in cultural terms – is going to be increasingly important as our numbers grow.

We are many, but – even if we were not so great in number – the failure of welcome is a gross social injustice to us.

Big money can invest in gene detection and ‘cure’ (anti-welcome) but advances in thinking and understanding of autism will ultimately outstrip this kind of project, I believe. Nothing convinces me that autism (as a biologically driven social orientation) can or should be cured. To be clear, I’m not talking about co-morbid conditions, I’m talking about the core features of autism.

I know some who feel cursed by autism (due to societal cruelty) and want a ‘cure’. I respect this and mourn the lack of anything near genuine welcome in their lives, which is I believe the root cause of this negative self image. We practice a ghastly death to difference in the post-modern world with the deficit model of autism, and it’s a cause for profound grief.

But stripped back and laid bare – borrowing the language of ‘cure’ momentarily – the ‘cure’ lies in the social realm. The remedy is social progress. The ‘cure’ is welcome (genuine welcome that is), and this has everything to do with giving and getting.

You can’t welcome what you don’t perceive. A culturally dominant misinterpretation of autistic focus and communication creates a feedback loop of rejection.

There follows a process. When your natural and joyful communication is stigmatised you are barred from giving (unless you learn to conform). Those of us who learn to adapt do so at immense cost (which is unsustainable), those who can’t are quickly marginalised.

But wait, what am I doing talking about giving? Surely I should be focusing on what autistics need to be given by others?

And here we are. We are brought up on the truism that giving is receiving, but this is usually meant as a somewhat vague spiritual reward, and is rarely understood (or acknowledged) as a power dynamic.  My use of the word getting is very deliberate – it is active, whereas receiving is a passive word.

That our fundamental need to give in order to get is seldom spoken of is (at bottom) due to social lying. Neuro-normative culture sentimentalises what is in fact a vital social contract.

People who give are good, worthy, inspiring and downright decent human beings. Yes – they can be (I don’t deny this) , but people who give are in a position to do so. People who give get back untold riches – and not only of the spiritual kind.

Countless micro transactions take place on a daily basis in which invaluable commodities are exchanged. Good will is perhaps one of the most important commodities of all. In so very many contexts good will can be converted (somewhere along the line) into hard cash. Social fluency (of the dominant kind) creates the conditions for this powerful ‘alchemy’.

Without the means to wield this power autistic people can fall prey to a form of ‘social’ poverty which can create a devastating impact on a person over a lifetime, from infancy onwards, from the point at which a child’s babbling is labelled ‘not functional’.

I feel it is this anti-welcome culture which creates a deathly cycle of rejection. Some can face a lifetime of not getting.  This is not just manifest by the grand obsession with ‘curing’ us, it is articulated through every organ of the state in which autistics are deemed deficient and our communication dysfunctional.

This is a catastrophic pile-up of not ‘getting’ which can result in lives lost, lives not lived even halfway to the full, and lives lived on the margin of both economic and emotional survival.

As I write, a vast clump of anti-welcomes forms before my eyes, like a scrap metal tower teetering up into the sky. I tilt my neck, but I cannot see the top.

It sounds like an exaggeration – I wish it was. The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.

Giving is invaluable – a golden seam with which to make a life whole and prosperous. We all need access to the endless rounds of being there and fitting in that a neurologically sanctioned childhood brings, all of which leads to the kinds of ‘getting’ I’m talking about.

For any of this to be put right we need a revolution – and I do believe it’s coming as our understanding about autism continues to grows. At heart the measures needed are truly simple.

We need to change the language of deficit and take the focus away from a ‘cure’ for autism. We need to begin with an open armed welcome for neurological difference within the spectrum that is human culture/s.

We also need to understand that this is not a question of kindness. This is about understanding the nuts and bolts of social power. This is about giving as a right.

 

 

 

 

 

 

 

 

 

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Red lines and the echoes of history; police brutality and the Catalan question.

October 2, 2017 § 7 Comments

I am not Catalan but I feel the recent events in Spain very deeply. I am an Anglo-British daughter of a Spanish Republican exile born in Madrid. My grandfather was from Galicia and my grandmother from Southern Spain, but they returned from their exile in France in 1941 to live in Barcelona. This place was my home from home as I grew up. Barcelona was my long Summers’ idyl, the city of all my high days and holidays, and my absolute love.

I have written often in my art blog about the long erasure of the Spanish exiles from the history books of Spain, and how my father and my grandparents never spoke of their internment in the French camps of Argelès sur Mer and Barcarès. I didn’t know or question why I lived in two places, or why my grandmother wept so bitterly in her kitchen each time we returned to England.

This is what violent political repression does – it silences you. Not just in the streets with batons. No. The erasure of memory and the taping of tongues creeps deeply into the everyday fabric of our lives. In many ways the invisible brutality of a dictatorship is at the heart of my recent cycle of paintings called simply, Buenos Días Dictador.

The dictator is everywhere and nowhere. The dictator follows you wherever you go.

The Catalan question itself is too complex for me to write about. I am an artist, not a historian or political analyst. But I know about living with exile. I know about suppression. And I know what’s more that these wounds run so deep in Spain that even 81 years on from the start of that Civil War it is hard to talk about Spain. Mine is a postmemory experience. My contact with the history is indirect, but my fear is present and real.

I have changed my social media settings to share this blog post.

The Catalan question can be hard to grasp, but you can recognise state suppression when you see it. All the hallmarks are there – and it’s impossible to argue with the statement by Barcelona’s mayor Ada Colau. A line has been crossed and Rajoy is not fit to serve. Like so many bullies before him he is a coward, one who has set armed police against an unarmed citizenry.

There have been many opportunities to negotiate, which is what democracies are made for.  Democracy is talking. Democracy can never be throwing citizens around like rag dolls, breaking their fingers, kicking and batting them with truncheons. Someone has died I believe, and more than 800 injured.

Most sickeningly there have been statements by Rajoy and his deputy claiming a proportionate  response. But, no. This is not ‘normal’ or right.

With my art practice I witness. It’s all I can do.

 

 

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.

 

Making it through.

May 6, 2016 § 7 Comments

Photo on 05-05-2016 at 14.01

My last post was about waiting for Arts Council England (ACE) to make a decision on my project. Funding from public money in the arts is limited and brings a great responsibility to the recipient. So I feel incredibly fortunate to have been awarded funding under the Grants for the Arts scheme, and will give my all to this work. The ability to maintain a sustained focus and perfectionism are real assets in my job. They are also what enabled me to put three months into the project development and application – though I could not have made it through without my network of helping hands. Trusted neurotypicals, who were willing to share their insights and skills with me to navigate the NT world.

Autistic artists face multiple barriers in applying for this kind of award. These became apparent to me during the application process, and I have begun to write some survival notes for other artists in my art blog. Yesterday this particular blog post was shared on Twitter by the Arts Council itself – it feels as though my message about the inequities faced by neurodiverse artists is beginning to filter through.

ACE have a wonderful helpline for those who can access the telephone and you can also email. There are generous access measures in place if you can find them and they happen to take the form you can get along with. I felt encouraged at every turn by the people interface at ACE. But difficulties remain in accessing the access for many of us (a frustrating tautology), and further barriers created by the clunky new online portal called Grantium. A more detailed analysis of what is so very wrong with this template for neurodiverse artists will be a longer and more technical matter than befits a blog post – and possibly the work of consultation with ACE if they’re willing.

These are major issues for neurodiverse artists, but could be improved without great difficulty I feel. From my days of social policy study I reckon these to be “at a stroke” changes, meaning that they require only  policy shifts and administrative nods to implement. SO it is important to bring them home to source, as I’m certain ACE are committed to access and equality and that these obstacles are systemic and unwitting.

The larger more insidious inequities are those of the social world which are embedded in arts opportunity on every scale and form. This will take a great deal of unpicking to arrive at an adequate description of what is so very disadvantageous for autistic artists in particular. I’m ready for the long haul.

 

 

 

Waiting for an Arts Council decision

April 19, 2016 § 2 Comments

My process of application to Art Council England (ACE) is coming to a close and I will be documenting it in the final two weeks. Even though it is statistically more probable that I won’t be successful I want the decision to be visible.

I have some serious questions about the process, having gone through it. How many autistic artists are failed by unwieldy bureaucratic stipulations and the new inaccessible online portal? Even prior to this hurdle we risk failing to meet criteria due to the embedded and hidden social agendas that dominate preferred professional practices.

Fundamental to the application is the understanding of neurotypical professional advancement in all it’s complexity – I am willing to bet that the majority of us don’t conceive of our professional practices in this way. This is but one area of hidden code. I could name many more but that will be for another much longer blog post.

Research is needed into how many autistic artists apply to ACE for their own work, and are successful. I’m not talking about autistics as subjects or clients – but rather as artists in their own right.

 

 

Out of the Shadows

April 14, 2016 § 2 Comments

New video work about presenting my authentic autistic self in my art practice. I explore NOT performing neurotypicality, in my studio, and through my own video explorations.

The music of my body: a humorous take on dealing with Arts Council Funding stress.

March 2, 2016 § Leave a comment

This video was made in the throes of my application to Arts Council England and as part of a more serious conversation about the difficulties of access for neurodivergent artists. I felt it was time to let off a bit of steam. Feedback so far is that it is hilarious.

“51 second of joy” Brent White.

Also part of a conversation about how neurodivergent people reclaim spaces in a neuro-normative culture.

Enjoy!

NB. Not for those who find eye contact difficult.

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