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

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.

Open Carry: An Exploration into our Attachment to the handbag and Related Behaviour. Part 1.

(A powerful and intriguing blog post by Ruth Geldard, featuring some of her work for #MfOR, originally posted on her own blog.) 

“The handbag is one of our most debated, most gendered cultural artefacts. It can be a powerful status symbol, and is a universally recognised indicator of femininity.” Sandra Mardin

My own preoccupation with them began in childhood, standing at a stall at a Bring and Buy sale, and the dawning realisation that I could buy nine used handbags with my pocket money, equivalent to the price of a Mars bar today. They were all shapes and sizes in different materials; leather, moc croc, plastic and textile. The thing that stuck though and remained with me throughout my life, was the used-ness of them, what today would be described as being, pre-loved. The surface of the bags bore graphic traces that evidenced the previous owners/wearers, their scent and their very battered-ness, resonated and hinted at, other lives. And I loved them all.

In retrospect, I think this early, multiple-bag exposure, set in train, a heightened perception of and material sensitivity to old bags. I would give anything to see them again. And this has made me think of the long succession of bags that followed, I remember them all in graphic detail, I could even draw them for you…

“…handbags are in some way linked to the feminine and one would have to see a direct link with the womb…”                                                                                            Rosalind Mayo

The idea of the handbag performing as a cipher for the womb in dream analysis, was started by Freud and continues to seep into the culture today. It seems I have chosen an object which carries multifarious, perceptual and literal baggage and so this stage of the project: to identify and define possible areas of work, has not been easy. During this research phase, I began to notice certain commonalities to do with, bag behaviour. At a party, the hostess noticed that I was carrying a small shoulder bag. She joked with me about this being a safe place to put it down and seeing my reluctance, ushered me to a point under the stairs where there was what seemed to be a whole flock of women’s bags all clustered together forming a circle. There was something so tender about this and memories of being in busy clubs and saying to strangers, “could I leave my bag with yours?” came to mind. Safety in numbers perhaps, but I find it hard to imagine a parallel situation with men and their briefcases or man bags, of which more later.

I couldn’t bear to end up as an Elvis Presley and sing in Las Vegas with all those housewives and old ladies come in with their handbags. It’s really sick.             Mick Jagger

Interested in the physical evidence of wear, I began a series of bag portraits starting with my own, I treated it exactly as if it was a human sitter. I side-lit the model and placed it on a white background. Then asked friends to come with their bags and sit with me as I drew, while we discussed their bag behaviour. At this point, the project took on an identity of its own, complete with illuminating anomalies, tangents and emotional projections. One friend was “traumatised” when she put her favourite bag in the post, another was so conflicted, she became unable to choose between two of her favourites. The husband of another woman insisted on her giving me a particular bag that he “loved”, but she herself did not and had barely used. There were times when I found myself cheating and breaking self-imposed rules. Each bag seemed to demand it’s own medium, also, I wanted the bags to face me, all in the same position, to do that, I had to pack them out, to make them stand up properly and found myself filling them with whatever came to hand, glasses cases, candles, baked bean tins…Putting my hand inside another woman’s handbag felt decidedly weird.

“Bags also serve as the portable manifestation of a woman’s sense of self, a detailed and remarkably revealing map of her interior, an omnium-gatherum of myriad aspects of her life…”                                                                                                                      Daphne Merkin

And then, talking and simultaneously drawing the model, something I have always managed before, now became difficult, as I was forced to turn my head away from the subject. When I did have a bag to myself, (contrary to expectation) I was able to engage more deeply and with no constraints, would work for hours. But insights from the feedback given by the bag-owners, kept coming and helped me focus. One participant recounted fetching her mother’s handbag and having to hold it at arm’s length, not wanting it to touch her body as it would have made her uncomfortable. This brought up something I have often encountered, bag awe, most noticeable around your mother’s handbag, but in a lesser way, an indefinable aurapertaining to all women’s handbags.

“Of course, I am obstinate in defending our liberties and our law. That is why I carry a big handbag.” Margaret thatcher

With all this talk of handbags, a memory surfaced, of being at a late-night party and a slightly squiffy friend, unable or unwilling to find an ashtray, found an unattended handbag, opened it, flicked her ash into it and casually carried on smoking, occasionally tipping her ash on the rim. Finally, she ground out the butt with the heel of her shoe, flipped it into the bag and snapped it shut. I have never got over the shock and sense of transgression, how could she…? When I recently recounted this story to a friend she looked suitably shocked and said,

“Yes, that’s like spitting in someone’s face.”

Exactly.

Part II follows.

Ruth Geldard – August 2017

Perfect storm.

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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.

 

 

Memories are made of this.

 

The air is crisp and I have a book to read. A book about material memory – the backbone of my artistic practice.

I reflect that this book is itself an object. A treasure sifted from the internet. I often go prospecting online. It suits my brain. Sifting is soothing and over time has proved richly rewarding.

Persistence pays.

For example, a tweet lasts for 18 minutes (I’m told) before it sinks under the volume of subsequent contenders. So you have to sift carefully, scroll and click, scroll and click.

Repeat and repeat this action often enough and either you’ll find something useful in the archive, or suddenly you’re there in the moment when a fleck of gold sparkles live.

Such was the case with, Material Memories, Design and Evocation, (Ed Marius Kwint, Christopher Breward & Jeremy Aynsley) Berg, 1999. It appeared in a tweet by the Art Historian Marius Kwint, who I’ve been following for some time.

My copy is ex library, it has a yellow 7 day sticker on the spine, and a white label which reads Gen. Lit. B—0.5 KWI. A Leeds University Library sticker (green print) on the inside cover has been stamped WITHDRAWN in black. A further loan record slip on the opposite (and otherwise) blank page confirms (in blue print) that it was a 7 day loan book. It bears one stamp – 15 JUN 2009 and a further black WITHDRAWN stamp. The slip also says in bold, Edward Boyle Library. For a second I play detective – withdrawn in 2009 this book has lived another life and known other hands.

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Edward Boyle Library

Another layer of consciousness? A separate gear?  I am suddenly transported to all the libraries I have ever known (as in falling down a rabbit hole) – but to one library specifically. The library of my undergraduate university days on the Sussex University campus, as a student of art history. A sensation no doubt egged on by two familiar names. Contributors to this book include tutors from my degree course – Marcia Pointon and Nigel Llewellyn.

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Sussex University Library

 

Further good augeries are contained in this book’s colour. Ah, it is orange (the colour of my wedding dress). The right orange (positive vibes ++/ like a duracell battery lasting longer, longer, longer). Warmth and vitality are promised – a dose of intellectual vitamin C.

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The pages are smooth and weighty.

Each section or chapter bears a rectangular back and white photograph of a dissected nautilus shell top right. Further visual interruptions (a fine right-angled line at the top corner of each page) signal, I feel, that our subject is visual culture. I like it all.

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Willem van Aelst Still Life with Fish, Bread and Nautilus Cup 17th century (detail)

 

The nautilus for the art historian (one who wrote her dissertation on Dutch still life certainly) subliminally signals vanitas genre at each turn of the chapter heading; the allusion to natural history museums is not missed either (I even make a stab at fibonacci in the far reaches of consciousness).

 

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Natural History Museum Oxford

Now I am in all the galleries and museums I have bodily experience of. But quickly (as before) specifics take over and I find myself in the Oxford Natural History Museum which, like a museums Russian doll, houses the Pitt Rivers (a museum displaying the archaeological and anthropological collections of the University of Oxford ). I hover between them.

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Pitt Rivers Museum, Oxford.

As sometimes in a dream, I break the 4th wall to ask myself a question. When images or objects transport us, when memory is embodied thus, are we floating I wonder? And does this have a steering wheel? But I’ve broken the spell, and I don’t have an answer.

Marius observes (p4) this kind of involuntary memory is,

“…not the symbolic realm of the Freudian unconscious, but something wholly sensual and hence physiological. Here memory connects with the entire body and the full complexity of the world around.”

It’s this power of the object to bodily transport us (or bring back to us visceral memory), which has stuck me most in my work. It was my beginnings with my grandmother’s handbag in 2013, by which I mean to say my formation as the object art practitioner I am today.

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Barcelona in a Bag installation  © Sonia Boue 2013

It was also the genesis of first incarnation of The Museum for Object Research blog. The extraordinary evocation of a childhood, tinged with the grief of war through this household object, led to my subsequent work on the Spanish Civil War as a postmemory experience – but it also begged some more general questions.

How can an object contain ‘lost’ or hidden worlds (of memory) and restore them bodily to us? By what mechanism; and how as artists can we convey such experiences to our audiences?

In my practice I moved sharply from making objects or distorting them, to conserving them and keeping them whole. I no longer wanted to create objects from found materials or paint over them – a different form of assemblage emerged where bringing objects together or framing them made it possible to be as specific as I needed to be in my allusions to an actual history. I did not want to mark them in any way. And in doing so I opened the door to the viewer’s imagination to sense the atmosphere and fill the gaps (although all the contextual material is available in my blogs).

You could say that I found my subject. But I found my objects too. Yet I was hungry for knowledge, for a framework to understand this work by. I sought to share these thoughts and findings with other object artists and widen the investigation.

The joy of the blog was in finding colleagues and revelling in the richness of their object art practices. In pooling resources we created community, which now seeks expression in offline spaces and is currently in development.

Marius’ book (it turned out) is actually a talking book – as Twitter proves again to be a catalyst for connection and also conversation. By the magic of this digital age I could read and tweet my observations directly to him. Further sorcery – Marius could respond!

How gratifying and instructive to be able to talk about some of the  concepts behind this rich collection of writings on material memory, and also be joined by Elena Thomas my MfOR collaborator in chief.

This is honestly the best of Twitter for artists. Making accessible the thinkers who can bring your practice on through their insights, and who you instinctively feel from their writing  will get what you’re about. This can only happen when people are open and generous with their time. Thank you Marius!

What a perfect antidote to the current negative trends this lucky find has proved to be.