Sharing practice as an ‘autistic artist’ – some personal observations on ableism.

December 5, 2018 § 3 Comments

Sonia Boué, Dirt Cups, 2012

I’m still processing. 

This is a phrase commonly heard among a particular cohort. The group in question is a network of autistic women (I’ve come to know) who’ve been diagnosed autistic late in life. 

What I’m processing (to get back to it) is a first ever experience of sharing my practice as an ‘autistic artist’. Previously I have only ever had cause to share my practice as an artist, period. Let me tell you, there can be a huge difference!

For the first time, I understand the fear attached to being labelled.

Perhaps to no surprise, it turns out that outing yourself (to people who don’t know you well enough nor have an evolved understanding of autism) closes down the shutters of perception. It can even dictate (it seems) what is considered fair comment – the like of which I don’t think would be tolerated for any other minority group in the room. We probably occupy what is currently the last frontier in minority rights. Others will emerge, I’m sure. 

When I share as the usual art me Sonia Boué specialising in postmemory work relating to the Spanish Civil War – I feel understood. I never fail to be met with respect and often even a gratifying interest in the many layers of my practice. Hurrah! 

It is also understood that I have a track record, that I’m a professional person who has worked hard and gained significant experience in many areas of practice. So far so brilliant! 

I have always felt included and certainly never felt ‘othered’. What I now know of as privilege. 

I wish I could say that I was afforded the same respect when presenting my work as an autistic person more recently. Ableism klaxon!

With hindsight I can see that it was my fault. Doh!

I had tried to broker any misunderstanding of my practice head on. My work is implicitly autistic (because I am) but autism is not my subject, was what I went with  Keep it simple, is a motto I try to live by. 

But I had opened a crack in the door for ableist comment and aggression to pile in (unwittingly, it has to be said). 

Do I exaggerate? No, not really. 

Autistic people are subject to aggression and disrespect all the time. It’s just that I’m masking and passing usually. 

A code of practice? 

For me this has highlighted a particular need for a code of practice when sharing our work as autistic artists, which I feel moved to think about more deeply – and process a little more. 

It shouldn’t be needed and perhaps won’t be in all contexts – but until we make more progress on autism I’m for being ‘share ready’ or indeed not ready to share. I think this is about being more boundaried as individuals but also about pooling knowledge on how to highlight and protect the needs of a community of creatives that is now coming forwards. 

A great deal of what I encounter in my mentoring and consultancy practice is a gaping hole around ‘mindfulness’ where diverse neurologies intersect. I’m not talking about a buzzword version of mindfulness. I’m referring to slowing down to a speed at which we can ALL process more effectively. I ‘m talking about (where we can) controlling the parameters of our engagement. This is my ambition for my cohort. 

It is an absolute myth that good work happens at speed or that those who are quick are also more effective. 

In my minds eye I see a giant hand. The palm is out-turned, signalling stop. It is gentle but firm – not a deity but rather a traffic signal. 

I am secretly enamoured of the road sign and street paraphernalia that controls the flow of traffic. I long for tee-shirts with stop and go symbols! No entry! One way! Dead end! All beautifully simple and clear as means of communication. 

You can’t get a license to drive until you’ve learnt the Highway Code for a very good reason – you’d kill or get killed pretty quickly without it. 

I like the idea of a nice laid out set of rules for engagement. I like rules. 

My ideal beginning for sharing my practice as an autistic person would be; STOP. LOOK. LISTEN. (responses on a post-it note ONLY)

Now where have I heard that before! 

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#AutisticMotherhood Misrepresented

April 27, 2018 § 8 Comments

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Work in Progress in the Studio © Sonia Boué 2018

 

I’m breaking a rule by writing about a play I haven’t read or seen, called The Big Things, by Mike Heath, which has recently stirred unease among autistic people, autistic mothers in particular.  The Big Things, is ostensibly about autistic motherhood but from what I hear this subject is never truly examined in the play.

Yes okay, I’m going on hearsay (from autistic women who’ve read the script and one who’s seen the play) but this is more than good enough for me. I feel I’ve given both playwright and production company (Kibo) more than enough of my time in the past few days.

Autistic motherhood, in contrast, is a subject I know intimately from the inside, unlike Mike Heath.

Mike Heath, and Kibo Productions have stumbled into a PR nightmare in taking on this subject (it seems) without sufficient knowledge or research. The real shocker for me is that this play should be Shortlisted for the BBC Alfred Bradley Bursary Award 2016.  Culturally speaking, no-one in the room sees autistic women. Let alone do they see us as creatives who might want to (and do) write our own plays about ourselves.

But I think this play slipped through the net, as it were, because it’s not really about autistic motherhood (how could it be?) No – this play is about how frustrating a fictional neurotypical man finds it to have a relationship with an autism stereotype. She’s a cardboard cut-out, dude. No wonder….

I should explain that as an autistic mother my greatest fear about this play is that it could gain success.  And that the portrayal of “Grace” (ironically named as she has no grace?) could develop the legs of a Rainman or a Christopher (Curious Incident in the Nightime) and go walk about. Such figures stick and we are landed with them, unable to shake them off for decades. I literally shudder at this thought.

I wouldn’t suggest that a neurotypical man should never write about autistic motherhood, for what is fiction if not the work of imagination?

But I admit I’m not keen on the notion of neurotypical men writing about autistic women at this point in our cultural emergence (for reasons of historic and systemic ableism and patriarchy). But if they must, at the very least they should do the homework (which means consulting actually autistic women who are mothers, and hiring us as sensitivity editors).

If they must, they should do right by us and avoid writing harmful stereotypes. But this sounds like a horrible play, which does exactly the opposite.

At one point in the heated Twitter debate things went a bit dark. Were some of us trying to force their creative to do something against his will, Kibo Tweeted, somewhat petulantly I thought. Er, NO.

Up until this point it had seemed they would do their utmost to put this living howler right. They’d seemed hapless and merely ignorant (although they had tweeted inaccurately that the National Autistic Society had read the script for them). No-one was calling out malicious intention (that I could see) or being in any way coercive – not at all. It’s my experience that autistic people rarely feel they have power in such situations – this is the whole point.

Somehow as a group we had overstepped the mark for Kibo, and trust was on the wane on both sides. This irony shouldn’t be lost.

A group conversation online can go in many directions, and meanings misunderstood. But we’re rightfully angry about The Big Things.

I wish Mike Heath had not had the sense of entitlement to write this play. He was, of course, free to write it – but no one said autistic mothers had to like it, or quieten down while others mop up the mess.

Autistics are a minority group who don’t have cultural representation (although we’re edging forward) – the point is that we don’t yet have a voice. The voice we’re presently conferred by others thus becomes crucial – each time. Each time someone who has a platform writes about us and gets it wrong we’re pushed back.

This is vital for autistic women who are mothers too. We have been even more overlooked as a demographic.  We’ve been either unimagined (as not possible) or maligned (refrigerator mothers – autistic causation seeping from our frozen nipples to our unloved infants!)

I felt the shadow of Bruno Bettelheim in the descriptions I read of Grace by the autistic women who act as my first hand witnesses. Is it any wonder that this conversation is so uncomfortable for us all? It should be.

If you want to support the voices of autistic mothers, please read this marvellous open letter  led by Katherine May. You can ask to be a signatory in support, and you don’t have to be an autistic mother to do so.

Thank you so much for reading this post.

 

 

 

 

 

 

Get networked in! Autism and systemic ableism in the arts.

April 15, 2018 § 10 Comments

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Mrs Pepperpot to the Rescue

 

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?

(NB. I have been told ACE rules don’t demand that we match our access costs, and that exemptions exist within the present system – but this is simply not reflected in the mixed messages ACE give to it’s funding interface users).

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 paste 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 the director. 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 keeps 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 received 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.

 

 

 

 

 

 

 

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