actually autistic

How was it for you? #NUNOproject

a pile of leaflets on a table in front of a red, wooden door
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a pile of leaflets on a table in front of a red, wooden door

What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.

Soon I will be asking the artists on the Arts Council England (ACE) funded Neither Use Nor Ornament (NUNO) project, how was it for you?

I have to do this as part of my evaluation process, but I’m also genuinely curious. This has been a unique project in which I have explored what it means to lead autistically (in my case). 

I won’t have got things ‘right’ in all cases, but we made it to the finishing post of our exhibition opening in quite some style. I’m anxious to hear if and how my leadership has made a difference to the artist’s experiences of participation – and if this has further impacted their lives. 

What I can tell you is what this project has done for me, by investing in my participation as a ‘player’ at a more senior level in my profession. In doing so I make the case for more of this for more of us. Autistic arts professionals are currently lacking such opportunity for progression – not only as artists but also as artist organisers. This needs to change.

It’s really very simple. In enabling me – through funding – to lead a significant project like NUNO, ACE have helped me to shift from a state of aversion to one of enthusiasm. Autistic aversion (in my case), I see now, was clearly fostered by a lifetime of exclusion. Not understanding neurotypical social code is perhaps where an autistic person begins in life, due to fundamental perceptual differences. What is less understood perhaps is the continued impact of this as a mechanism of our exclusion across a lifetime. Or indeed, what might happen in terms of ‘social appetite’ if the dynamic of exclusion were somehow ameliorated by genuine inclusion at any given point in time. It’s all so obvious once you’ve lived through it, but how many of us get this chance? 

I feel we should be more aware that for some autistics social exclusion and a resulting aversion is a dynamic predicated on social bias, which once in play generates a serious barrier to our ability to decode social situations over a lifetime. Through such a dynamic myriad points of learning are lost, by which I mean two-way learning. 

So what impact on the possibility of ‘social learning’ across neurologies can genuine inclusion make? I pose the question thinking that I know the answer. I think the impact can be highly significant because of the quality of my own experience in my shift from aversion to enthusiasm. Suddenly, elements of shared social spaces stack up. I am exposed to learning and foster learning in others. This is a two-way conversation. 

I’m careful to mention the other side of the neurological coin in terms of learning (so-called neurotypicality). I’ve found that leading as an autistic person enables learning to flow in all directions. Neurotypical learning around me is probably the bit I can’t see, but which I reckon has made a whole heap of difference to how I am received and therefore to how I feel. I know that I am lucky in this regard – it can go so badly wrong when people can’t listen well. I’ve built up to this moment and have chosen my shared social spaces very carefully.

Being a ‘player’ has been vital to this process in which I now find myself wanting to engage with people and places in new and unexpected ways. I still crave a duvet day when life gets too busy, and I don’t love crowded events or small talk. I haven’t stopped being autistic – that not a thing, and I wouldn’t want it to be. What I’m talking about is appetite. The vital waters of my professional life no longer feel cold and uninviting. What NUNO has created – through it’s emphasis on people and relationships – is a warm hug. 

Social anxiety and social sensitivity are often seen as negatives, but what if they have fostered a deep sense of responsibility and generated a high level of care for the people on my project? I myself know that they most definitely have. What also, if by some mechanism unknown to me – other than sharing my neurological status and leading autistically – I have been treated more carefully in return? I feel this must be true.

What if seizing the opportunity to lead autistically and to design my project as accessibly as possible has led to something really fundamental? I look forward to gathering more evidence for this exciting notion in the weeks to come. 

Currently, we lack models for what is needed to challenge the stranglehold neurotypicality has had on our culture. The dynamic it creates for autistic people is, in my view, toxic. So I very much hope that in time NUNO may provide one such needed template for others to riff with. 

étude in Z –

~ soniaboue ~ Leave a comment

A guest post by Dr Dawn-Joy Leong

bunnyhopscotch
making sense of the senses, musing over muses… and just having great fun!

In 2015, I created and presented Sonata in Z, from which emerged my now signature concept, “Clement Space“, first installed as its own entity in 2017 at The BIG Anxiety Festival, Sydney, Australia. Thereafter, Clement Space has been installed in different sites and situations, its enduring and developing presence attests to the universal need for respite, especially in frenetic, chaotic cityscapes.

Since then, I’ve been conscious about finding my own pockets of Clement Space too. Most of them are small studies in the state of clemency and grace, little spontaneous moments that bring sparks of Autistic Joy, or miniature physical podlets of rest and restoration found and taken in the midst fluttering, swirling and trundling through the day – not as large as a sonata, they are tiny études amidst daunting and domineering Wagnerian Symphonic Pulverisations. That chuckling shadow of Artaud does add liberal doses of vim and spice to my struggle with Wagner, but Clement Space – inspired by my beloved Lucy Like-a-Charm – is my antidote.

While helping mother locate a lost DC adaptor plug, digging around her drawers, I found some forgotten treasures that belonged to my late father, which mother kindly let me have.

A kidney shaped stainless steel tray containing various surgical and dental tools, and a minuscule pill-box sized leather case with two Chinese name seals inside.

There is a wealth of history behind each of these, but today is not the day to spin long stories. I am happy inside this mental clement space, this suspended moment in time and place, just from having found these objects which reach back into time, connecting me to the individual journeys that each item undertook while in my father’s possession. He is gone now, but a part of him – known and mysteriously unknown – is embedded within. And they are now mine, from Dr. Leong to Dr. Leong, captured inside this moment that I now call, “Étude in Z”.

The Duck: Rhiannon Lloyd William’s Play reviewed by Sonia Boué

an origami duck sitting on top of a theatre playbill
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Photo by Alex Forshaw

The Duck, a production by Autact Theatre Company, is a remarkable play, and, going to see it at the Stroud Theatre Festival last week, felt like a significant cultural moment.

Playwright, Rhiannon Lloyd-Williams is a late diagnosed autistic woman, and she  forms part of what has been termed the ‘lost generation’ – I count myself among their number. Our diagnosis’ have been delayed into adulthood through cultural ignorance about autism as anything other than a series of stereotypes which exclude us. I won’t list them here, but suffice to say that males, savants, and geeks have dominated the cultural landscape (through no fault of their own, I might add).

Before continuing I want to state that this review is not the place to detail issues of gender identity within our community (which have also fallen under the radar). This play is not about women, it’s about one woman.

The play opens at the moment of recognition. I’m a duck! The duck in question is a metaphor for autism, and for 50 spellbinding minutes the audience is immersed in the thought processes of an autistic mind. For some of us (autistics) this is familiar territory and we can insert our own detail and nuance into the narrative. For non-autistic audiences this is instructive, in the best sense of the word. The play is not didactic, and the learning arrives through the offer of empathy – Lloyd-William’s brilliance is that she enables the non-autistic person to inhabit her mind, to loan it (if you will) for a brief yet vivid moment.

This is a one woman play, and actress, Lucy Theobald, gives a quite extraordinary performance. Coached by Lloyd-Williams herself, there is a sense in which she acts as her avatar. Theobald is her physical stand-in, complete with ‘stims’ (the gestures we often rely on to regulate emotion and sensation), but also allows the playwright the necessary distance to write from the gut. There are no punches held here.

As the diagnosis unfurls we are treated to the rawness of a lifetime of alienation which is unknown in origin. The torture of autism as a condition not yet revealed is really in the not knowing, which provides a vacuum for self-blame to be sealed in as tightly as superglue. My own experience is that unlocking this knowledge is redemptive. It was never autism that troubled me. I  now understand that my difference is simply  another way of being human. Not all autistics will share my sentiments but we can unite on the core message of this play.

I sat and squirmed as the labels which had been conferred on our heroine in the place of ‘duckness’ were rolled out in a devastating sequence. My own label was ‘naughty’. My poor parents were not to blame. They weren’t to know why I ‘disobeyed’ them royally – and did the opposite of everything they asked me to – and to their great credit they still found a way to love me.  Such labelling and misunderstanding of our behaviours can be immensely damaging and even threaten our emotional survival. Our heroine makes a passionate plea to peel back the labels in order to understand and accept us.

My favourite passages of this one act play are when Lucy Theobald revs up the theatrical encounter, breaking the forth wall. Autistics are supposed to struggle with communication – and so we do at times, especially when asked to do so in conventional manner. Lloyd Williams breaks this assumption with the sheer articulacy of her writing, Jo Loyn’s direction of Theobald to engage us with eye contact and pointing underlines the point; and so the table-turning begins! Audience members are questioned (rhetorically), and drawn in to the heart of the action. We’re both inside her head and onlookers – I honestly don’t know how the author did this.

In many ways this is a confrontational work, but the beauty of the writing is that the voice is gentle and the audience is held. I like to be in two places at once. I’m prone to wriggling in my chair and casting my eyes about the room. I am also fond of observing faces and was treated to a section of the front row, which curved around almost facing me (albeit from some small but helpful distance, as I sat at the very end of the middle row by the door). I saw three things; wonder, care, and compassion. I might have glimpsed discomfort (but it was fleeting and productive, I felt).

What you want in a production like this is to feel safe while being challenged, and it’s a fine balance to achieve; so it’s all the more impressive to find it so deftly handled in a debut play from an emerging writer.

What I saw on those faces, now embossed in my minds eye, were the flashes and flickers of shifting emotions as Theobald dealt out the play’s denouement. A twist autistics will be familiar with (but no less thrilled by) and which will leave unsuspecting non-autistics gasping. No spoilers from me.

I am reminded of my own debut speech as an ‘out’ autistic person in which I declared myself a person in translation. My audience feedback was that I had changed perception – that they would never think in quite the same way again.

This is what I think the incredibly talented Rhi Lloyd Williams has achieved with The Duck – a paradigm shift. As a blogger on autism (at Autism and Expectations) she is immensely popular and widely read on a global scale because she has a rare capacity to straddle neurologies with writing that is also beautiful. She is also a poet and a performer.

As an autistic person who (disclaimer) is also a friend, my one wish for the play (in the moment) was for the author to act the part. I quickly saw why for many practical reasons this wouldn’t work. The remove, in working with an actress rather than making this a performative piece for the author, reveals itself as the production’s strength. Theobald’s embodiment of Lloyd William’s words is an extended act of empathy, as I suggest at the top of this piece. She leads the audience in a parallel act.

This is not the usual autism shtick so many autistic people have come to dread, which only serves to feed unhelpful stereotypes. We’re tired of Rainman and The Curious Incident of the Dog in the Nighttime. This is something wholly new. An authentic voice has emerged, and it’s my fervent wish that The Duck can be seen and heard in many venues across the land.

The Arts Council England funded Museum for Object Research and WEBworks collaborative project, NUNO (Neither Use Nor Ornament), is also proud to count Rhiannon Lloyd Williams among our WEBworks creatives as Poet in Residence for the project.

Witten by Sonia Boué

Autism and systemic ableism in arts networks.

drawing of a little girl with a bunch of flowers looking at a doll sized woman sitting on some steps
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Network ableism is an under explored topic. Sonia Boué has written a new blog post about autistic artists and the problems of networking in neurotypical systems. Encountering ableism in the Arts Council funding system she seeks to uncover serious inequities in the application process. First published on The Other Side.

My name is Sonia Boué and I’m an autistic artist. I’ve had a lot of luck in my career lately –  which has largely come about using my own autistic methods and working with two truly wonderful mentors. On the face of it I look pretty networked in, but most of my opportunities have come from sharing my work and ideas online. At the end of each project I have to start from scratch, and I have no idea how to ‘use my contacts’ or network neurotypically. The sheer scale of the social labour involved in networking neurotypically is beyond me.  This is why I have created a new kind of network called WEBworks, which is autistic in conception and in all it’s various manifestations. It’s for autistic artists and has a focus on professional development and creating access to opportunity. It’s a small pilot project – manageable and yet ambitious. It’s about empowering us all to become more visible and gain parity in the arts.

People are probably attracted to my work because of the intense autistic focus I am able to give to it – my attention is directed at what I do and not who I know.

So it’s been a jolt, and a hugely painful experience to be told by someone from Arts Council England at a recent conference (in a room full of professionals) to just “get networked in.”

Invisible disability is a box you can tick on a funding form to indicate who might benefit from your project, but it remains invisible in terms of just who might be present in a room full of professional people all grappling with the diminishing funding pot in the arts.

Autistic people are invisible as players. We’re so invisible that I’ve unearthed a major inequity in the funding requirements for those like me who aspire to be players. You see, I need big funding for my project, which includes support for WEBworks. Under present funding rules I need to prove why I can’t compete on a level playing field to match fund my project – and make the case that disabled people should not have to match fund their own access needs (and in my case that of my autistic colleagues). Perhaps no-one has thought of this, because no-one like me has ever applied to be a player?

I made a largely sound based video about this funding anomaly if you’d like to know more.

When I found myself quite by accident at an ACE funding surgery in my local area and brought up the possible problems with match funding for disabled people in general – I was told this would have to be proved. If you just have a foot missing we wouldn’t be convinced.

I let this ableist comment go at the time, but made a mental note – this person needs training – and I  (and all my autistic colleagues) hold much of the the missing knowledge.

A missing foot (if you will call it thus) could imply almost any level of impact in a person’s life (invisible disability such as PTSD, chronic pain, fatigue…we just don’t know and shouldn’t assume) which could affect their ability to raise the signifiant sums of match funding required if they are also not networked in. We’re not talking peanuts, we’re talking resource rich networks from whom signifiant favours can be drawn into a project – for which you have to be resource rich yourself to earn them (in ways I, and those like me just can’t be).

I shouldn’t really be blogging. I have my Arts Council application to finish, but this is way too important not to bring to light.

You see something profoundly (if unwittingly) ableist just happened to me, so aspects of Arts Council England’s disabling funding system have literally fallen into place.

I  tried to speak about access in the system at a recent arts conference where Arts Council representatives were present.

For context, I rarely go to arts conferences because I find them inaccessible and they often don’t tend to speak to my experience.  I don’t generally go about with a large ‘A’ stuck to my forehead, or a, hey, I’m autistic! t-shirt on either. In fairness not many people knew my status (though I did make a point of telling everyone I spoke to). If I go again – as I now feel I must – I will break all my own sartorial rules and wear the t-shirt (with flashing lights if needs be).

But when I raised what I consider to be a very real problem of access I have myself encountered and blogged about on the a-n blog site, I was just not taken seriously by the Arts Council representative. In the time it’s taken me to cut and past this link I’ve received a comment from another artist. I know I was speaking for many.

“Yes, yes, YES! Keep going! I didn’t know there were diversity officers. Thank you for writing about this.”

Yet when I did speak up I was assured that everyone could have access to this particular service – just like that!

One person who heads a National Portfolio Organisation agreed. We have a regular meeting where you can talk to an Arts Council relationship manager (people who hold key information and can help with an application process)  – as though I should perhaps have known about it.

Like the Alf Prøysen character in the illustration above, I immediately shrank to the size of a pepperpot! But something made me go on (I’m autistically stubborn and all about justice).

But you have to be networked in to have this access, I pointed out, without stopping to reflect that this might seem rude. I was contradicting someone who had (oh to hell with it) contradicted me. As I look back on it now – they were essentially making my point for me.

Well, get networked in! the Arts Council rep replied, as though this were the easiest (and most equitable) thing in the world. That appeared to be the end of my ‘non-point’. I was to join the NPO groups’ monthly meetings, job done.

I felt the room close in on me. I had both humiliated myself and been silenced.

In the break that followed, there was no processing time. One kind person offered to send details of the NPO group meetings, and another told me they too had struggled to get access to a relationship manager.

Then darkness – a film presentation to end the day. An unexpected event. Tears rolled suddenly down my face. Have you noticed how obvious tear wiping can be – so much rustling and grabbing for tissues, and elbows wiggling as you surreptitiously dab at your eyes. I let them roll.

But why tears? People had been nice to me, and the moment had passed.

I cried because the film was just so beautiful. Broken lives were being made whole again through the arts. I cried because I had been disabled by taking a risk and speaking out. The profound silencing of autistic people is historic and deeply painful within each one of us.

I want to talk to all the regional directors of Arts Council England. I want to talk to thedirector. I would like to tell them about our struggle, and the bias of their systems.

I want them to know how art redeems every aspect of my life and keep me connected.  That I and others like me have so much to give – that we can be players if the playing field is levelled. What’s more we bring authenticity to the table. Truth is that Arts Council need us as much as we need it.

I’m not networked in, I will probably never be so in a recognisably neurotypical way. I rely on people to ‘get’ me and meet me half way. What interests me is how to make the system open and fair.

I want people at the very top of the organisation I apply to funding for to know how hard it was for me to stay in the room at this conference. How hard I have to work to be present, and what it took for me to raise my voice.  So here goes.

One of the presentations just goes on and on. Everyone in the room is loving it I think, but the stage lighting sends an never-ending series of blows across my retina. I’m sitting too close to the stage. And the voices won’t stop. So many voices.

I’m caught by surprise. This shouldn’t happen now – the conference is in its opening stages and I have all day to manage. I struggle to find a strategy or any kind of relief. I begin to wriggle in my chair conscious that I mustn’t do this too much or someone will notice. Surely it will stop soon I think, so I try to hang on. But no, it just carries on and on.

I dig into my bag for the the soft tangle brush I sometimes use to rub across my palms to regulate the build-up tension, but by now I’m honestly near screaming point – the option of screaming occurs to me but I fully understand this would break an unbreakable rule. I realise after the event that the voices were too loud – the mics were set at the wrong level for someone with my sensory issues sitting so close to the front of this theatre space – I receive information from the sound system which others can filter out. I’m desperate but rooted to my chair. The brush is as effective as a wet sponge. I dig it into my palms but it may as well be in my bag for all the good it does me. The voices just won’t stop – I close my eyes but not for long. Drawing attention to myself is the last thing I want to do. As the presentation draws to close I suddenly remember to pinch my skin under my sleeve and I step out of the storm.

The lighting shifts again and we’re brought back into a room I can regulate myself in more easily. I can appear ‘normal’. There is no visible sign of my distress or the energy it took for me to survive this level of unexpected sensory onslaught. I’ll know in future to sit at the back with easy access to an exit.

I want everyone at Arts Council England to know that telling anyone who begins a conversation by saying that they have struggled with access  (in any context and for any reason) to get networked in, is simply not equitable. And I’m sorry, but for invisible disability it’s like telling a wheelchair user to grow a leg.

If you listen bottom up to authentic voices you’ll also discover why not everyone can just speak to a relationship manager.

It’s time for social currency (and who’s got it) to rise up the Arts Council diversity agenda.

An Arts Council award can be a profoundly life changing event in the professional life of an artist. This is what I want for all the artists who are involved in WEBworks.

In fact, I might just attach this blog post to my application. Why not – it sums up the need for my project perfectly.

Professional development & opportunity the WEBworks way – new film by Naomi Morris

a blue and grey landscape painting with collaged female figure in a long red skirt . hanging in front of the painting is a pair of wooden castanets
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Commissioned to make a short film response to MfOR, Naomi Morris has chosen to focus on the practice of project lead Sonia Boué. A lyrical and sensitive reading of her mentor’s practice Naomi shares her own insight into what it means to work with objects as language.

Naomi’s film will be used in a forthcoming series of workshops with the community of St Luke’s Church in Oxford, to illustrates object work in artistic practice. St Lukes is located in an area of social deprivation and Naomi’s work will help enable members of the community to engage with object work themselves,  as assemblage and through the medium of film.

This film will also be shown at a “WEBs” programme screening at FILMOxford in 2019

You can view the film HERE

Naomi MfOR film
Naomi Morris – film still

 

Perfect storm.

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IMG_1678

This photograph was taken outside the Magdalen Road Studios project space Filament 14, during MfOR’s mid term gathering of artist proposals.

NB. The poem in this blog post first appeared on my (Sonia Boué’s) The Other Side blog site, which is where much of the material about my research on the autistic professional template for MfOR can be found. 

So we’ve reach a mid term point in our Arts Council funded research and development for MfOR. Where have we got to? 

My professional template research was planned to take place alongside practical development of the MfOR project, but in practice has been so radical in it’s findings that a reshaping of the project has been needed, which continues to evolve.

The key questions to emerge – what is an autistic-led project, and have we designed one – were not even framed at the outset, let alone tested.

The answer to the latter is that we haven’t, because (Catch 22 alert) we didn’t know what one looked like before my research began.

Due to prevailing norms we’ve designed a predominant neurotype (PNT) project, based on PNT principles – which (by definition) are largely disabling to an autistic person/professional.

Redesigning the project is therefore a process – ongoing.

In a nutshell, MfOR began as an optimistic experiment with my autism, yet I was from first principles unwittingly disabled by my own PNT influenced project design.

Autism is a non-trivial human difference, and yet PNT systems are so embedded in the everyday that one is easily wrong-footed and (in very real terms) dis-abled despite being a perfectly competent autistic human.  But however competent I may be, I can’t project lead while disabled.

Fortunately, part of my particular humanness is a heightened ability to focus, analyse, unpick and reconstruct. My ‘condition’ (if it is such) makes me a creative troubleshooter par excellence  – I have to be to survive.

The job right now is to allow space for this thinking to unfold. I’m discovering so much about being disabled, about the absolute wisdom of the social model of disability and – more importantly still – how non-autistic humans become disabled in autistic spaces. This really does work both ways.

I hope the Arts Council – if they’re watching at this stage – approve that much of my working through of this thinking comes via the poetic form. My last ACE funded project Through An Artist’s Eye had poetry as a core professional development goal for improvement in technique and confidence. Hey, Arts Council – that was money well spent, and this is too. I can’t think of many more important cultural causes than a true investment in diversity. I’m so grateful for the opportunity to carry out this difficult, challenging and significant work – which I hope will be of benefit to others.  The personal and professional development for me is proving immense.

Here is the preamble to the poem from The Other Side.

“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.”

 

Sonia Boué

———————————————————————————————————————————-

Perfect Storm

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.