Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

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Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.

I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.

I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.

I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.

Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.

Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.

There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?

Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.

It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.

Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.

I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.

We seem to use it to bash each other over the head, and I’m just not up for that.

I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.

This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.

In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.

I am both pulled about by my own privilege, and afraid of repressive impulses in humans.

If you follow my art practice you’ll know that I have good reason to be.

http://www.soniaboue.co.uk

 

 

 

 

 

 

 

 

 

 

 

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Portal: disabling bureaucracy #ActuallyAutistic

May 6, 2018 § Leave a comment

 

Portal 10I don’t want to write too many words. I’d like my video to speak for itself. Mainly, I need Arts Council England to know that their bureaucratic processes, in current form, disable significant groups of autistic and neurodivergent artists.

This is a specific issue in my life – but I also want to make a more general point that bureaucracy physically hurts us.

I know autistics who succeed in making Arts Council applications – I also know many who are unable to contemplate beginning one. The argument often goes that “neurotypical” artists struggle with it too. Albeit true, (in the sense that it is a gruelling process of competition for limited resources which also requires ‘insider information’ to succeed) it is also an ableist thing to say because it minimises exactly how uneven the playing ground is for us as a group. Just because some of us push through doesn’t mean it is okay. The bar is high – but the bar is also structurally unfair.

I want also to say that those of us who do take on the beast can be harmed in the process. I think this is disabling.

I think the Arts Council should know.

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.

 

 

 

 

 

 

 

Not a programme to do your ironing to! #Radio4

March 23, 2018 § 5 Comments

 

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It’s not a programme to do your ironing to, my producer, Anna Scott-Brown, warned me minutes before the transmission of, The Art of Now: Return to Catalonia (an Overtone Productions programme for BBC Radio 4), which you can listen to on iPlayer on the link above.

I’d spent the previous three days feeling like I was trapped in an elevator shaft with the lift about to drop on my head from the tension of waiting to hear it!

With such a short run up time I’d  thrown myself into the project and relied on hyperfocus to develop the creative concept and refine every detail needed to retrace my father’s exile journey from Spain to England in 1939, making creative responses along the way.

We finished our recording in Spain, and my part was over. Anna and (co-director) Adam Fowler, then toiled at the edit and sound design to craft the woolly mammoth of material we’d created into a 28 minute programme ( we generated so much material in fact that the editing software groaned, registered full, and would take no more!) I just couldn’t imagine how they would do it.

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During transmission I was transfixed. I honestly sat staring at the radio with my ears cocked like a spaniel – I really did – as a dazzling geology of sound whizzed about my ears seeming to stop time.

It is the most extraordinary radio programme I have ever heard – due entirely to Overtone Productions artistry. I’m incredibly proud to be part of it. It’s a rich, immersive, sophisticated listen – the imagery piles in from moment 1.

My extended family sat 60 miles away gathered around the radio, listening intently together as families once did. My teenage daughter surprised me by slinking onto the sofa unbidden to hear it.

Messages flooded in. Enhorabuena! The layering is really beautiful! Your voice sounds wonderful….

A poet watched  patches of sunlight dance on the wall which she said  looked exactly like the sound of my voice as she listened. She sent me a video – it really does.

The following day I heard from friends who’d toiled up the mountain of listening (like the exiles crossing the Pyrenees) to unpick the intricate soundscape. Hearing is not always a given we must remember, and in this case a husband lent his ears to transcribe it from iPlayer for his wife. An act of love and dedication (on so many levels) echoing the love which went into making this programme.

I’m immensely grateful, and somewhat in awe – I feel I’ve reach a summit. This was my dream job – an artist can ask for no more. To open up my soul on Radio 4 has been quite extraordinary  – to have shared this journey with Overtone Productions is even more precious.

The genius of their work is that in each listening (and I keep on listening) you hear more layers. It took 5 times for me to catch my own voice lowered and playing under the sound of me digging in the sand – ¡Buenos días, dictator! I intone…the title of my recent exhibition, which is so so resonant in this moment of my ritual.

Having murmured into a recorder almost every day and sent endless files through WeTransfer, I realise that few people will understand my work better than they. They’ve heard me talking down my demons on my walks around Oxford, and know that I have all my best thoughts in the shower. It has been a revelation to record myself – something which I will continue to do as it’s such a useful creative tool. I will miss talking to Anna though – she has been such a wonderfully encouraging and receptive creative companion.

If you haven’t heard the programme yet I urge you to give it a listen. An art piece in itself, it’s a portrait of creative reliance in the face of inherited trauma. This has so much to say to us in present times.

A great deal of the visual output from this project can be found on my website.

 

 

 

 

 

 

The Art of Now: A Return to Catalonia #Radio4

February 5, 2018 § 9 Comments

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(I’m taking a camera which can’t take pictures to document the erasure of this history). 

The Art of Now: A Return to Catalonia

BBC Radio 4
Transmission Date Monday, 19th March 2018, 4pm
Presented by Sonia Boué
Produced by Anna Scott-Brown

So I’m finally returning. I can’t help wondering what Abuela (grandma) would say?

I wish too that my father could know that I am going back to Catalonia, via the beaches of Barcarès and Argèles (where he was held in refugee interment camps), to retrace his exile journey to England in 1939.

At the age of 18, he, along with 500,000 other Spaniards, fled for his life across the border to France. I have spent the last five years building a body of work in response to this family history, and have also cast my net wider to encompass figures such as British artist and Spanish Civil War volunteer, Felicia Browne, and the exiled Spanish writer and broadcaster, Arturo Barea.

Now, I have been asked to make a programme for Radio 4 with Overtone Productions, and my question about taking my practice to Spain will in part be answered. I will be retracing my father’s footsteps and creating responses along the way. We have a very short timeframe to make this programme and so I’m thrown into sifting and planning (in ways I am very conscious the exiles couldn’t) the artistic side of my journey.

The job feels vast, and at times overwhelming in the time available – not helped by a brain which  likes to canter off in 10 directions at once. Reigning in and staying focused is the thing. Here is where my obsessive nature is hugely beneficial to my work. I dig in and apply myself to the detail.

My feel for the bigger picture is pure intuition – I trust I can make the stages of my journey join up by getting each stage right conceptually speaking. My work is made easier because I can draw on some existing pieces in my growing collection, but I will be making new responses and hoping to bring them all together by the end of the programme.

I’m brimming with gratitude to Overtone Productions for pitching this programme, and feel a weight of responsibility – this is a highly sensitive history. Also Lurking is the spectre of inherited trauma – as I probe more deeply into it I gain a firmer grasp on the terror through which this history was suppressed. I hear new information from my mother which confirms it and brings it closer.

I feel my father’s fear as though it were my own. As though it were live.

I conclude that it is. This is what we mean by the term, postmemory. Recent events in Catalonia serve to demonstrate how difficult Spanish history is, how tensions remain from the unresolved legacies of the Civil War.

I won’t really know how to respond until I get to the beach of Barcarès, or until I’m confronted with the entrance to my grandmother’s flat (which she left in 1975) in the Barceloneta. All I can do is plan and pack my suitcases full of artistic possibility.

Each morning I pinch myself anew. Somehow I’ve landed the job of my dreams.

 

Organising the butterfly brain. #Autism #ExecutiveFunction #CreativePractice

November 29, 2017 § 6 Comments

 

 

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Work by Sonia Boué – 2015 Exilio exhibition. Photo by Chris Evans

Rare is the artist who can focus on their creative practice alone. My own professional life has become so varied that I myself struggle to balance the work that pays with my studio practice. Creative project development, managing the projects I create, my consultancy work, and mentoring, are all incredibly engrossing, rewarding and (I have to say it) time consuming.

It’s been a struggle to keep my own creative practice going as I’ve pushed forward all the other aspects of being a socially engaged artist-activist-facilitator, since my autism diagnosis in 2016.

I can’t complain (because I love it) but I do now need to ‘get organised’ – a term which ordinarily is an anathema to my brain.

Butterfly brains like mine don’t ‘organise’ in the conventional sense. No. Brains like mine like to organise through flow. And yet, I recognise that my in some ways super-efficient tendency to tackle work demands on an immediate – it’s in front of my nose so I’ll do it now – basis is not always going to get me into the studio early enough, or necessarily help me strategise  longer term (beyond this being my strategy, as it were).

In fact, the truth is that unless I ignore my inbox entirely, or deactivate Twitter, I may not leave the house before midmorning some days. Some urgency will grab my attention – I can get sucked down a rabbit hole of questionable use (though I maintain this is how I research, and that my best finds come about when I’m browsing), or throw myself into a fresh piece of consultancy that means I’m still in PJs when the post arrives (these days around 2pm). And then there are the inevitable meetings, meetings and more meetings – from which I must decompress.

OK, that quick-fire attention to new work leads is a plus, and can really pay off, as nothing impresses potential clients more than speed of attention to their needs – which in my case is genuine, I really do care. We autistics have to play to our strengths in the workplace after all. But could I prioritise my studio time in other ways?

Obviously social media can be a big ‘drain’ on one’s time – except for the fact that it can also act as a quite wonderful addition to the autistic freelancer’s workspace. Water cooler chat, professional networking, and a gymnasium for the ‘overactive’ mind – it’s all pretty positive when you frame it like this. I often tell the artists I mentor that some of my best opportunities have been created online, by hanging out, dawdling a while and putting great content out there as a calling card.

None of this has been done strategically by the by – it’s just happened.

Hmm.

Equally, I’ve had some major fallow periods and this has been pretty amazing too. There have been times when ‘realtime’ (how I hate the term for it’s hierarchical connotations) has taken over (as in days of old) and there simply hasn’t been time for Twitter, Instagram, and the like. It’s been edifying in many ways, involved a lot of masking (not so good) and made me intensely productive in the studio. AHA!

You see this is it. The autistic mind in my experience finds regulation tricky, and how the butterfly brain loves to flit from email to blog post at will! I speak for myself, of course, but so so often it’s an all or nothing thing for me. I’m either ONLINE or I’m OFF. Time spent away makes the social media platforms seem glitchy and a bit like Teflon – my brain forgets how to connect. People move on, the platform ‘upgrades’ and it’s all shot. You have to work at it to get back to where you were as a presence in people’s online minds. Don’t get me started on how bad the non-chronological timeline can be for autistics. We need our networks dammit! Sometimes this is even life-support.

So the prospect of creating some kind of structure for my work beyond the reactive is intriguing – how will I regulate the switches involved and will I really be ‘more productive’? My suspicion is that I will be differently productive, my worry is that I will lose out on flow. The ultimate goal is to manage it all, hold onto to all the plates I’m juggling without going into overload.

It’s my deep suspicion that much of this will require fine calibration, and that like taking vitamins (which I’m also trying out) I will be prone to forgetfulness, and lose track of the various jars which will gather dust and simply litter up the place. New habits and routines can be hard to sustain – like the over eager resolution, destined to fizzle out before Christmas.

Wish me luck. I really, really don’t want my creative work to slide away. So that’s a major motivation. A studio practice is all about turning up, and I’m looking forward to getting stuck in. After all – I should really practice what I preach to my dear mentees. Keep it going, find space for your work, carve out time!

 

Out of the Ashes – a talk for TORCH at Pitt Rivers Museum. #autism

November 17, 2017 § 1 Comment

Out of the Ashes – notes from the frontline of creative practice on the boundaries of visibility.

My talk for:

Untold Tales of Neurodivergence and Mental Health in Oxford, a panel hosted by The Oxford Research Centre in the Humanities (TORCH) and Pitt Rivers Museum. Pod cast also available.

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Panel (left to right) Dan Holloway, Marie Tidball, Miranda Reilly, Sonia Boue & Philip Ross Bullock

My talk today is about navigating the rapids of freelance work as an autistic creative and the challenges of working collaboratively across neurologies. My recent research has been a personal journey but has included a consultative partnership in the US and many conversations with autistic professionals across the globe.

I have come to know of so many talented hidden voices, and, while my talk is about a singular process, so much of what I have to say has a wider application.

My contribution to the theme of ‘Hidden Beneath the Surface’ is a tale of struggle in which becoming visible is an ongoing process and at times a question mark. What I offer are some preliminary thoughts culled from a much longer draft report for Arts Council England.

Introduction

I am an autistic artist and creative project lead. I stand before you as a person in translation.

I form part of what has been termed the “lost generation” of individuals who are diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional, I need accommodations to access the same level of opportunity as that of my peers.

I am now coming to the close of a unique piece of work, a personal case study in the field of freelance project work funded by the Arts Council. The aim of this research is to design an enabling toolkit for my work as an autistic project lead, which I will also use to enable and mentor other neurodivergent artists.

The key to understanding this piece of work is that I have had to build my tool kit from scratch as my project has unfolded. This is the first time I have worked visibly as an autistic person and attempted to advocate for my needs in the workplace.

Freelance project work in the arts is often informal, characterised by highly individual working practices, and without clear structures. We need funding to create self-led projects from which to build sustainable artistic practices in line with our peers. Yet, without adjustments for the challenges involved, we can quickly become disabled in the freelance melee.

Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards – but the barriers to our inclusion can be overwhelming. I have made it through the funding barriers, and yet my project proved disabling and needed major adjustments.

Autism as culture

Autism is both a neurological and cultural difference. We are a small minority with a unique social difference. We live in societies which expect and demand from us a social orientation and aptitudes which are quite other. This is pervasive and disabling in ways not easily recognised or understood by the majority.

But those who work with us don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed, the demand to share personal information about ourselves to gain access is an issue in itself (Mia Mingus). In an ideal world, our needs should be accepted without question and active measures taken, but in reality, they are mired in social complexities, and we are currently forced to navigate access via the very social codes which can disable us.

Deconstructing the power imbalance

Aspects of my experience stand as a cautionary tale. The earliest iteration of my project floundered on the question of inclusion despite this being its primary goal.

The bare bones of my situation were that I had agreed to work collaboratively to shape a project around my needs. I had lent my creative idea, and my neurodivergence was the rationale for funding; but still my needs became submerged. So how did this happen?

Well, I think we need a wider understanding that effective inclusion is a two way street of adaptation, and that accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us – especially in close collaborations across neuro-types.

And, while we may seem to speak the same language, our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice.

There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the ‘double empathy bind’ (Damian Milton).

Neurotypicals find it difficult to relate to and engage with autistic experience, and vice versa.

A mirror world exists in which the only difference between us is that of number. I promise you that many of the ‘flaws’ suggested by the deficit models of autism can be aimed at neurotypicals from an autistic perspective. This has perhaps been my profoundest piece of learning.

Project leadership and design

To lead a project, I need to work in ways which minimise my anxiety. Anxiety is a constant for many autistic people, and can become disabling.

High standards of professional practice can be extremely helpful in countering anxiety at work.

But my project had unwittingly placed too much reliance on a single means of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.

This was hugely inefficient and anxiety provoking, and at times it seemed my project had been built on quicksand.

I’ve learned that enabling project design will include multiple and direct access routes, and allow for a hands on approach in all areas where outcomes matter, also that truly successful access must be written in at the point of design and not simply added on later. My toolkit and my thoughts about project design have begun to merge.

Social labour

In the informal freelance arts sector, there can be a high reliance on NT friendship codes and relationships.

Autistic access needs can be socially misunderstood due to prevailing norms and the emotional needs of others. It isn’t easy to find a way to tell your colleagues that the emotional labour they take for granted can be taxing enough to make you lose the power of speech later in your day. Invariably, people tend to feel that your needs don’t apply to them, because these norms are so powerfully dominant and immediate in our lives.

But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work.

My mid term project hack was to establish rules for contact, and filter interactions by limiting contact time and channelling all communications to one email address.

These simple adjustments quietened down all noise which was not work related. Some forms of invisibility can be a very good thing.

Masking and trauma 

But generally we have to mask or otherwise camouflage autism in the workplace, and this is exhausting and destructive in the long term. It is this very issue my research seeks to address.

It is genuinely hard for colleagues to understand this, because autism can be invisible even when we try to explain ourselves, and such failures of communication can be genuinely traumatising.

Our struggles can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs, however, lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.

Conclusions

As autistic professionals we face a bewildering tautology. In order to become visible, we must express our needs in translation. We share language and use the same words about a sometimes radically different set of experiences. We cannot thus assume a shared meaning or understanding. This is why it is vital to focus on the machinery of access – the nuts and bolts if you like.

Translating autism is a job in itself and no guarantee of successful communication, and though I am a huge believer in cultural advocacy in its many forms, I think it is unwise to expose ourselves to this labour in workplace negotiations.

Equality, I’ve come to think, should not require that we ‘overshare’ our vulnerability (so to speak). This can serve to accentuate the power imbalance in collaborations across neuro-types.

I think that smart project design will be the kind that fits so well you can barely see it. And for this, we need the liberty to design our projects around our neurological profiles, and present our toolkits as a matter of high professionalism. For this we need spaces to think and plan autistically, and to share and disseminate our learning, which is my intention.

My quest has taken me much deeper than expected but I think my learning is all the greater for it.

Visibility is not for everyone, because privacy really does matter and may be crucial for wellbeing, and the layers of our suppressions are multiple and complex. But I have found the urge to test these boundaries has brought the richest of rewards – that of personal and professional congruence. I am profoundly grateful to the Arts Council for this opportunity to develop my practice as an autistic creative.

In becoming visible, we encourage others to do the same. This creates momentum and so can lead to change. But, in doing so, we can be measured in what we share, and this too is our right.

 

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