December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.
I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.
Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.
Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.
The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.
A non sequiter I know.
The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.
So my boxing day was interesting. I spent the day in a blur playing catch up.
Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.
But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.
It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.
So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.
My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!
Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.
So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!
I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.
So my New Year resolution is very different this year. For 2019 I promise not to change a thing.
December 23, 2018 § Leave a comment
I love it when nice offers come into my inbox through my artist website.
So I was delighted when New York Foundation for the Arts (NYFA) recently invited me to take part in a Twitter Q&A on ‘Alternative Networking’.
Since my autism diagnosis in 2016, I created WEBworks, a peer support and mentoring group for autistic and neurodivergent creatives, and have written about networking and social disability. I’ve been able to gain Arts Council England funding for my work and am leading an ambitious inclusive project called, Neither Use Nor Ornament (NUNO), to be delivered in Spring 2019.
It was this work which brought NYFA to my door.
It’s been a joyful and collaborative experience to work with NYFA’s Mirielle Clifford and Amy Aronoff, who produced the Q&A and worked with me to accommodate my needs. So much so that a blog was created as a permanent post, so that those (like me) who find processing fast moving conversations a challenge can read the Q&A at leisure.
I’m immensely grateful for the welcome given to neurodivergence at NYFA on this occasion. To reach out to an artist like me, to really listen and go the extra mile by incorporating their learning from me into the fabric of the Q&A feels like a dream. It has been a marvellous end to a truly remarkable year for me.
So if you would like to read the full the full Q&A you can!
December 5, 2018 § 3 Comments
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!
November 22, 2018 § 2 Comments
In my day job I am a visual artist with my own practice, but I’m also a community artist, mentor, trainer, and consultant. I work on various community arts projects as a freelancer, and I also lead my own project over on The Museum for Object Research.
I’m writing to share some of my findings after three months of working towards an inclusive Arts Council England funded project, where autistic and non-autistic artists will exhibit their work together (in March/February 2019 in Oxford). So there’s still a way to go. Our project title is, Neither Use Nor Ornament, or #NUNO for short.
It began with the grand idea to bring together two distinct networks, one predating the other. The longer standing group of non-autistic artists were to show their work in an exhibition that had already been planned. The newer group of autistic artists would create an events programme to run concurrently, thereby creating a distinct but equal platform while allowing for a cross-pollination of ideas and influences.
In my minds eye – the group show appeared as a fixed point at the core of the project and the events programme whizzed around it like a Catherine wheel! I liked thinking about the dynamic interdependence of each element as a metaphor. Could this be a new model in the making?
Audiences would certainly gain a sense of contrast – and when we began the project, the two networks were indeed quite separate, their only real point of intersection being me. But would it make any sense beyond my own imagination, and would this represent genuine inclusion? As a visual artist especially I need to ask myself, what does inclusion look like?
The project (in a nutshell) is really about one person’s professional journey towards congruence after a late diagnosis of autism, and their (my) greater commitment to journeying in company for the benefit of a wider group. My project is about making change happen for some of the artists involved, it also seeks to inform arts organisations. Challenging audience perception is important to us though our spirit is not confrontational.
Our first model was what you might call high on visibility. At this point, I didn’t know any better.
High vis ( or ‘Day-Glo diversity’!) could meet with approval from a body like Arts Council England, who we know need to be seen to be doing better on this score.
But as my project progresses I’m increasingly wary of the Day-Glo approach, which you see quite a lot in the arts right now. Genuine work is taking place in some cases but I’m disquieted by this trend in diversity signalling.
Inclusion should be an every day thing, rather than exceptional.
A hegemonic insistence on ‘normality’ conditions us to believe that signalling ‘difference’ in highly visible ways challenges perceptions and therefore creates an instance of inclusion. There are times when this works precisely because our assumptions about who can be a player in society are so rigid.
But this strategy of ‘watching’ difference and ‘noticing’ it (as inspirational often) implies a norm from which ‘difference’ is discernible. This is hidden ‘centring’ and we must tear off the fetid blinkers of normality conditioning to see it.
Losing that fixed point, ditching that norm, and embracing diversity within humanity as the default setting would have us up in arms at the inequities of our very biased everyday assumptions.
At this point I refer back to the wisdom of an autistic child I knew, whose logical insistence that if we’re all different (as we are) then nobody is special when it comes to educational need (or anything else for that matter).
Ghettoisation (in the name of inclusion) within mainstream education can definitely be a thing – and it has marked this young person – as a teenager their instinct for survival prompted them to ditch all visible support. Not wanting to appear ‘different’ (because it so stigmatised them) tells you everything you need to know about being singled out for ‘special’ attention in ‘mainstream’ education.
Obviously school pupils turn into adults. Some will go on to wield power and be the decision makers of the future. What will inclusion mean to them? What does inclusion look like?
Some of them will also buy lottery tickets – an important source of Arts Council England funding streams. Therefore (if current systems remain) some of these pupils will go on to fund projects like mine. Their adult counterparts of today have indeed funded my project, and ideally they could be among our audiences too.
My project is an attempt to reach out across these invisible fault lines, but the scales have fallen from my eyes. My Catherine wheel was never going to take off, I was in thrall to a ‘neurotypical’ hegemony called ‘normality’.
As our work has gone on, I’ve listened to the artists on my project and absorbed the effects of high visibility on each one of them – and not all of them want it. Creative practice may seem like a ‘safe zone’ for the kind of self expression which extends to autistic unmasking – but how safe is it really? The problem with gaining a professional platform is precisely that you can be seen. Irony!
And where invisible disability is concerned (such as autism) – some of us have been conditioned to mask our difference in order to survive – stigma and discrimination threaten if we show ourselves.
Art practices do not exist in a vacuum and art alone cannot dissolve ableism – we’ve needed to get real about this. We don’t chose to use masking strategies, they occur as an adaptation. I know that it’s a relative privilege to mask, not all of us can do this, but for those who can it is a right.
Yet increasingly privacy is being eroded – we are encouraged to share professional profiles on the very social media that friends, families and colleagues use. It is now almost impossible to control personal information which forms any part of a public persona. Very recently this happened to me.
The funny look at the non-autism related exhibition opening. I experienced it only the other day. Oh, you’re Sonia Boué. My ‘fame’ in this instance was an autistic person not an artist. A googely-eyed stare is not the end of the world but it’s not a great look. I’ve learned to brush it off, but that’s not the point. Invisible disability can demand a calculation at each and every turn. It’s exhausting and sometimes the cause of great anxiety.
How much of myself do I show? Where are my safe zones? How often must I pretend and wait for my unmasking?
Mainly we must ask ourselves, what will it cost me? Will it cost me my job, if I have one? Will it affect my mental health?
Will I be bullied or abused?
And here, of course, my heart bleeds for the autistics who cannot hide. The point is that no-one should have to face this.
But for me this is one reason why an ideal model of inclusive practice comes without a whizz and a bang. Some of us need to mask our identities while gaining in rightful professional development.
In any case, I wonder if great inclusive practice is something you can’t necessarily see!
Increasingly, I think this could be a truth to live by. Not only is inclusive practice potentially a quieter, more careful and considered game than I’d imagined, but the ultimate goal is that we genuinely don’t see ‘difference’ because we’re all included equally.
So it isn’t so much about what you see that counts. What matters is the activity that goes on behind the scenes to make a piece of work happen in a manner that’s ethical and beneficial to all.
As I move forward with my project I find that my ideas are shifting.
Our new model is still forming, and the much longed for cross pollination of ideas and influences is taking place. I’m pretty sure I haven’t always got this right, but the learning curve gives a spectacular view. I have a brilliant team and the most wonderful artists on board. The biggest change for me is that I no longer see my project as being one of two parts. Probably that’s what inclusion looks like.
I’m grateful for ongoing conversations with the Arts at the Old Fire Station & Crisis Skylight partnership in Oxford, and with my mentor Miranda Millward, and with Thomas Procter-Legg Headteacher of Iffley Academy in Oxford, in informing aspects of my thinking about inclusive practice.
I’m also grateful to Alastair Somerville of Acuity Design for his thinking on normality, in particular his latest writing on Building a normal world.
May 6, 2018 § Leave a comment
I 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.
April 15, 2018 § 10 Comments
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.
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.
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.
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.
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.
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.