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.
July 29, 2017 § 7 Comments
(A photograph from my Orphaned Identities series.)
I was recently commissioned by the Arts Council, to undertake a case study of my practice as an autistic arts professional, in order to design a series of access measures – which may also be of benefit to others. I’m learning a great deal, some of which I share here in the hope that it will contribute to the conversation about access at work.
I research at the coalface of freelance work and in conversation with other autistic professionals. Patterns are emerging at this midway point in my funded work.
This study has thrown up something important. Namely that there can be a real difference in perceptions about what ‘turning up for work’ means when collaborating as a freelance.
In my own case I’m learning that my standards are high – perhaps usually so. Also that I need to be in direct control of my work flow, especially when a project is complex, and in circumstances where I have high responsibility for outcomes.
This doesn’t present a problem in projects with clearly defined roles with discrete responsibilities where a standard of expectation is reliably matched. Through An Artist’s Eye was a perfect example of when this works well.
Autism is a professional asset. If you work with us you’ll often find meticulously organised people getting results, and meeting deadlines absolutely on time.
This is because we can often see the job that has to be done with great clarity. Myself, I work methodically paying attention to the parts, with an aerial view of the whole constantly in mind. Holding this level of focus is joyful and important to me. An athlete fresh off the blocks I’m running in full flow.
This is my rhythm and my method. And it works. This is so because my work and my being are as one.
So my commitment is absolute whether the work is a hard won commission with public funds, or a personal project like Orphaned Identities. I’m on it 100%.
I’m beginning to understand that a well designed project (autistically speaking) has controllable elements and can be worked through directly and systematically using flow, and also hyper focus whenever needed. While a poorly designed one has too greater reliance on third parties who may be remote, unavailable or seemingly ‘unreliable’ from an autistic perspective.
Such obstacles can seriously disrupt autistic flow on creative projects. And this represents disablement in action. Disrupting autistic thinking in a workspace, with the need for constant negotiation of terms (for example) or through distance and serial delays, has the effect of derailing purpose, and furthermore overloading functional capacity – and there’s absolutely no need for this with some careful thought to design with respect for access.
Chasing the tail of a consistently unavailable colleague (for example) can be extraordinarily stressful, not to say aversive. Such practices are perhaps commonplace in freelancing – but can have an effect not unlike ‘trolling’ on an autistic person. The toxicity of poor design in the workplace for autistics can’t really be overstated.
Matching commitment can also be an issue, and there’s an element of luck, which has nothing to do with neurology. ‘Discipline’ can sometimes be lacking in freelance environments, which can present a minefield of wrong-footing.
Building strategies for survival is essential. And when I say survival I mean it in the truest of senses – not in the breezy way it’s used in magazine style journalism. A real dilemma that we face is that our non-autistic colleagues may not absorb the seriousness of socially disabling bias’ at work because we’re often so conscientious.
This raises the issue of training for our non-autistic colleagues. In conversation with my fellow professionals there emerges a powerful consensus among us that training must be autistic led if it is to be of actual benefit to autistic people – who after all should be the natural recipients of positive change.
As an individual in a freelance setting – my growing feeling is that designing my own access measures is essential to create the best fit for me, but that autistic led training for colleagues could be an excellent complimentary addition in future.
Currently this is all still very much a work in progress – but I’m immensely grateful to my autistic colleagues for their invaluable input into my thinking. Being able to situate our practices within community is a consummate survival strategy in itself. This is why the future direction of my research in this area will focus on networks.
The issues I raise are common to a growing network of autistic professionals – currently we suffer the demands to mask our ‘condition’ due to socially embedded expectations at work. This is seriously disabling and real access challenge in freelance situations.
April 8, 2017 § 8 Comments
Photograph of Sonia Bouè’s Refugee Stack, 2015 by stardaffs.com
SO, something happened.
I have asked Arts Council England to support me in creating a document to outline my needs in the workplace. They just said yes! This piece of paper (or more likely powerpoint, video, series of poems, and – oh yes a handy list!) will be my ramp into neurotypcial spaces as an autistic arts professional.
All workspaces are the wrong neurotype for me. All of them. No invisible ramps exist for invisible conditions that I know of. So we have to start talking up visibility and making change happen.
Alongside the challenges of my autistic difference in an often hostile world, I have co-morbid conditions which present me with further obstacles to access. A restricted diet due to functional gut disorder, severe contact dermatitis, and Raynaud syndrome are on the daily menu. I must manage my energies and environments with the greatest of care, and commonly found canteen fare, air con and synthetically perfumed environments can act as enemy agents sending me into a spiral of ill health.
I need control over working conditions but as a freelance this is often a difficult and sometimes impossible challenge. My professional template will be designed to turn this around. A personal breakthrough in managing my conditions has been to gain a diagnosis of autism – at which I learnt that they come with the territory. They’re not autism per se but they come as an attachment and form part of the package.
What this does (in practice) is to bring this trio of troublemakers to heel. I click my fingers to round them up, and we become one. Autistic + co-morbids is the deal with me. I require detailed and specific accommodations in a complex and fast paced milieu – ie the arts!
But of course it is autism – and the myriad disadvantages faced in a neurotypical working context I hope to tackle head on. This is no add-on or postscript to my project. It is the core of my project. If I am to lead and create opportunity for others (my project brings employment among other benefits) then my team must come with me and I feel so lucky knowing that they will. Too long have autistics tagged along or even had their work exploited. Together we may just create a pioneering model.
I feel empowered and grateful – at last I have a way of gaining some leverage and intend to share my learning with other autistic artists who may also benefit.
So how did I get my funding – how did I make this opportunity happen?
- Teaming up with professional neurotypical allies has been key to this process.
- I have now spent two years of my professional life learning my way around the lower tier Arts Council England Grants for the Arts funding application process.
- Through the combined autistic skills of hyper focus and hyper connective thought I can create effective, coherent and strategic funding bids.
So in addition to my own work, I’m now in a position to offer a consultancy service. I can help to analyse and structure a proposal for a GFTA bid (currently at £15,000 and below, and in the near future for higher tier awards) for individual artists and small organisations. My skills are not limited to autistic/ neurodivergent artists & organisations but this is a specialism.
September 1, 2016 § 13 Comments
This is about when neurotypical (NT) people over-identify with an area of autistic struggle. If you’re autistic you’ll know exactly what I mean, if you’re NT – I’m not being rude but – I could be talking about you.
Why complain you ask? Identification is surely good?
Well…no actually, I don’t think it always is. In fact, this is something which can get in the way of autistic people being heard properly and fairly accommodated.
Many autistic people experience this over-identification. Often NT people begin to think that they themselves could be ‘a little bit’ autistic, with a matching and equal array of challenges.
It is a natural human response but it must be curbed when it comes to neurological difference.
This is not empathy. In fact this blocks empathy. Such NT responses are acutely demoralising for autistic people because they minimise our struggle.
And today my heart sank a little because…
Yesterday’s blog post about autistic artists and the inherent difficulties within professional structures and systems – including Arts Council England funding application processes – is already attracting the ‘me too’ response.
Autism poses unique challenges, which are not faced by NT people. This truth has to be absorbed more widely.
More specifically, if NT artists find the professional structures of the art world hostile and difficult to navigate, that sensation should be magnified twenty fold to understand the barriers to autistic professional progression.
A core challenge of autism resides in the specific area of social pragmatics, which just so happens to underpin every aspect of managing a career in the arts. Strengths in social communication are pretty much key.
This is why – of late – I consistently use the term autistic, rather than the terms neurodiverse/nerurodivergent in my blogs, because I believe specificity can be helpful in certain contexts. We are part of a larger group who are not ‘typical’, or rather which makes up a neuro-minority for whom existing societal practices and structures are disabling.
Yet we need to signal clearly exactly what our challenges consist of and I would like to try to articulate this the simplest terms regarding a defining and core aspect of our struggle.
The extreme emphasis on, and burden of social communication within an artist’s professional life creates a gross inequality for autistic artists, which operates across the board and at all levels.
I believe that if more NTs can manage the job of empathising with this – rather than imaging that they share in this singular predicament – we will have made progress.
Every glimmer of genuine empathy really does help us move towards action and change.
August 31, 2016 § 3 Comments
It’s been a rum two days.
First, a hateful article in a UK newspaper, which I’m not going to quote or link to. Defamatory language about autistic people can and should be challenged, but traffic denied.
I refuse to amplify ignorant, stereotyping voices, and the suspicion that it was click bait all along settles in.
Second, I find some very old comments on a news feature on my art blog site which relate to my video of February 2016 in which I critique Arts Council England’s funding application process for neurodivergent artists.
Comments which would make any sentient heart bleed.
“I have accepted a residency in Iceland but I don’t think I’ll be able to go because the task of finding funding appears to be beyond me.
I am also neurodivergent. I can’t seem to forward any of my projects because I just can’t overcome my disabilities effectively enough or find the help I need. Today I am literally just sitting crying because I can’t see a way forward…”
And suddenly I find my tolerance at a low ebb. I can’t sit back and say and do nothing. So I begin to Tweet – to various relevant bodies even though we are way after hours in the UK. These are tiny public acts, liable to be missed, and I’m suddenly also sickened by the imposed invisibility of so many of my fellow autistic art professionals. It’s time to get back on my soapbox and make some noise.
August 18, 2016 § 19 Comments
Photographs of the ‘dead squirrel.’
I’m trying something new. It’s linked to professional development funding from Arts Council England and my work as an artist.
I’m learning about writing poetry and exploring how to share this process and the eventual fruits of my studies in a professional context. My main interest is discovering how to combine visual imagery and poetry for exhibition or publishing. I’m interested in feedback from readers too. So far I’ve had my first professional crit on a poem, which is not quite ready yet. This one has been picked over by the most savage critics of all – my teenage kids.
See what you think and please comment (I don’t mind honesty but I would appreciate kindness).
For this poem (inspired by finding such a redolent object outside my house) I’m grateful to artist David Dipré for his comment on Instagram that my photograph of it looked like a dead squirrel. Something about this ignited my interest in writing about it.
Please share if you can I would love to get lots of feedback (gulp) signed the new risk-taking, boundary pushing moi. xx
(On waking at 4 am).
A blared duet.
No radio broadcast.
Just the lives of…
I don’t know who.
Rage is an alarm call.
punctuates the night.
The urban domestic
as sharp as shrapnel.
I crouch and pad down the stairs,
to slip a key in the lock.
But they do fucking run.
And now silence!
Sleep all done,
I limp to bed,
and ignite my screen.
Later on, a pavement find,
dished up for afters.
Their tryst trophy:
a dead squirrel.
Well…a Parka hood,
lying face down.
©Sonia Boué 2016
June 10, 2016 § 2 Comments
This is me in my double sized studio. I look tired but I’m happy. This week I took on more space for a few months, so that I can more easily complete an Arts Council funded project.
Today I spent 11 hours working in the space without noticing.
The project is absorbing and challenging. I think about it as I go to sleep – often resolving painting problems in my minds eye. I come up with potential solutions and new ideas. I wake before dawn, keen to get on.
This is how it is when inspiration strikes and autistic focus comes in to play.