Autism and systemic ableism in arts networks.

drawing of a little girl with a bunch of flowers looking at a doll sized woman sitting on some steps

Network ableism is an under explored topic. Sonia Boué has written a new blog post about autistic artists and the problems of networking in neurotypical systems. Encountering ableism in the Arts Council funding system she seeks to uncover serious inequities in the application process. First published on The Other Side.

My name is Sonia Boué and I’m an autistic artist. I’ve had a lot of luck in my career lately –  which has largely come about using my own autistic methods and working with two truly wonderful mentors. On the face of it I look pretty networked in, but most of my opportunities have come from sharing my work and ideas online. At the end of each project I have to start from scratch, and I have no idea how to ‘use my contacts’ or network neurotypically. The sheer scale of the social labour involved in networking neurotypically is beyond me.  This is why I have created a new kind of network called WEBworks, which is autistic in conception and in all it’s various manifestations. It’s for autistic artists and has a focus on professional development and creating access to opportunity. It’s a small pilot project – manageable and yet ambitious. It’s about empowering us all to become more visible and gain parity in the arts.

People are probably attracted to my work because of the intense autistic focus I am able to give to it – my attention is directed at what I do and not who I know.

So it’s been a jolt, and a hugely painful experience to be told by someone from Arts Council England at a recent conference (in a room full of professionals) to just “get networked in.”

Invisible disability is a box you can tick on a funding form to indicate who might benefit from your project, but it remains invisible in terms of just who might be present in a room full of professional people all grappling with the diminishing funding pot in the arts.

Autistic people are invisible as players. We’re so invisible that I’ve unearthed a major inequity in the funding requirements for those like me who aspire to be players. You see, I need big funding for my project, which includes support for WEBworks. Under present funding rules I need to prove why I can’t compete on a level playing field to match fund my project – and make the case that disabled people should not have to match fund their own access needs (and in my case that of my autistic colleagues). Perhaps no-one has thought of this, because no-one like me has ever applied to be a player?

I made a largely sound based video about this funding anomaly if you’d like to know more.

When I found myself quite by accident at an ACE funding surgery in my local area and brought up the possible problems with match funding for disabled people in general – I was told this would have to be proved. If you just have a foot missing we wouldn’t be convinced.

I let this ableist comment go at the time, but made a mental note – this person needs training – and I  (and all my autistic colleagues) hold much of the the missing knowledge.

A missing foot (if you will call it thus) could imply almost any level of impact in a person’s life (invisible disability such as PTSD, chronic pain, fatigue…we just don’t know and shouldn’t assume) which could affect their ability to raise the signifiant sums of match funding required if they are also not networked in. We’re not talking peanuts, we’re talking resource rich networks from whom signifiant favours can be drawn into a project – for which you have to be resource rich yourself to earn them (in ways I, and those like me just can’t be).

I shouldn’t really be blogging. I have my Arts Council application to finish, but this is way too important not to bring to light.

You see something profoundly (if unwittingly) ableist just happened to me, so aspects of Arts Council England’s disabling funding system have literally fallen into place.

I  tried to speak about access in the system at a recent arts conference where Arts Council representatives were present.

For context, I rarely go to arts conferences because I find them inaccessible and they often don’t tend to speak to my experience.  I don’t generally go about with a large ‘A’ stuck to my forehead, or a, hey, I’m autistic! t-shirt on either. In fairness not many people knew my status (though I did make a point of telling everyone I spoke to). If I go again – as I now feel I must – I will break all my own sartorial rules and wear the t-shirt (with flashing lights if needs be).

But when I raised what I consider to be a very real problem of access I have myself encountered and blogged about on the a-n blog site, I was just not taken seriously by the Arts Council representative. In the time it’s taken me to cut and past this link I’ve received a comment from another artist. I know I was speaking for many.

“Yes, yes, YES! Keep going! I didn’t know there were diversity officers. Thank you for writing about this.”

Yet when I did speak up I was assured that everyone could have access to this particular service – just like that!

One person who heads a National Portfolio Organisation agreed. We have a regular meeting where you can talk to an Arts Council relationship manager (people who hold key information and can help with an application process)  – as though I should perhaps have known about it.

Like the Alf Prøysen character in the illustration above, I immediately shrank to the size of a pepperpot! But something made me go on (I’m autistically stubborn and all about justice).

But you have to be networked in to have this access, I pointed out, without stopping to reflect that this might seem rude. I was contradicting someone who had (oh to hell with it) contradicted me. As I look back on it now – they were essentially making my point for me.

Well, get networked in! the Arts Council rep replied, as though this were the easiest (and most equitable) thing in the world. That appeared to be the end of my ‘non-point’. I was to join the NPO groups’ monthly meetings, job done.

I felt the room close in on me. I had both humiliated myself and been silenced.

In the break that followed, there was no processing time. One kind person offered to send details of the NPO group meetings, and another told me they too had struggled to get access to a relationship manager.

Then darkness – a film presentation to end the day. An unexpected event. Tears rolled suddenly down my face. Have you noticed how obvious tear wiping can be – so much rustling and grabbing for tissues, and elbows wiggling as you surreptitiously dab at your eyes. I let them roll.

But why tears? People had been nice to me, and the moment had passed.

I cried because the film was just so beautiful. Broken lives were being made whole again through the arts. I cried because I had been disabled by taking a risk and speaking out. The profound silencing of autistic people is historic and deeply painful within each one of us.

I want to talk to all the regional directors of Arts Council England. I want to talk to thedirector. I would like to tell them about our struggle, and the bias of their systems.

I want them to know how art redeems every aspect of my life and keep me connected.  That I and others like me have so much to give – that we can be players if the playing field is levelled. What’s more we bring authenticity to the table. Truth is that Arts Council need us as much as we need it.

I’m not networked in, I will probably never be so in a recognisably neurotypical way. I rely on people to ‘get’ me and meet me half way. What interests me is how to make the system open and fair.

I want people at the very top of the organisation I apply to funding for to know how hard it was for me to stay in the room at this conference. How hard I have to work to be present, and what it took for me to raise my voice.  So here goes.

One of the presentations just goes on and on. Everyone in the room is loving it I think, but the stage lighting sends an never-ending series of blows across my retina. I’m sitting too close to the stage. And the voices won’t stop. So many voices.

I’m caught by surprise. This shouldn’t happen now – the conference is in its opening stages and I have all day to manage. I struggle to find a strategy or any kind of relief. I begin to wriggle in my chair conscious that I mustn’t do this too much or someone will notice. Surely it will stop soon I think, so I try to hang on. But no, it just carries on and on.

I dig into my bag for the the soft tangle brush I sometimes use to rub across my palms to regulate the build-up tension, but by now I’m honestly near screaming point – the option of screaming occurs to me but I fully understand this would break an unbreakable rule. I realise after the event that the voices were too loud – the mics were set at the wrong level for someone with my sensory issues sitting so close to the front of this theatre space – I receive information from the sound system which others can filter out. I’m desperate but rooted to my chair. The brush is as effective as a wet sponge. I dig it into my palms but it may as well be in my bag for all the good it does me. The voices just won’t stop – I close my eyes but not for long. Drawing attention to myself is the last thing I want to do. As the presentation draws to close I suddenly remember to pinch my skin under my sleeve and I step out of the storm.

The lighting shifts again and we’re brought back into a room I can regulate myself in more easily. I can appear ‘normal’. There is no visible sign of my distress or the energy it took for me to survive this level of unexpected sensory onslaught. I’ll know in future to sit at the back with easy access to an exit.

I want everyone at Arts Council England to know that telling anyone who begins a conversation by saying that they have struggled with access  (in any context and for any reason) to get networked in, is simply not equitable. And I’m sorry, but for invisible disability it’s like telling a wheelchair user to grow a leg.

If you listen bottom up to authentic voices you’ll also discover why not everyone can just speak to a relationship manager.

It’s time for social currency (and who’s got it) to rise up the Arts Council diversity agenda.

An Arts Council award can be a profoundly life changing event in the professional life of an artist. This is what I want for all the artists who are involved in WEBworks.

In fact, I might just attach this blog post to my application. Why not – it sums up the need for my project perfectly.

Professional development & opportunity the WEBworks way – new film by Naomi Morris

a blue and grey landscape painting with collaged female figure in a long red skirt . hanging in front of the painting is a pair of wooden castanets

Commissioned to make a short film response to MfOR, Naomi Morris has chosen to focus on the practice of project lead Sonia Boué. A lyrical and sensitive reading of her mentor’s practice Naomi shares her own insight into what it means to work with objects as language.

Naomi’s film will be used in a forthcoming series of workshops with the community of St Luke’s Church in Oxford, to illustrates object work in artistic practice. St Lukes is located in an area of social deprivation and Naomi’s work will help enable members of the community to engage with object work themselves,  as assemblage and through the medium of film.

This film will also be shown at a “WEBs” programme screening at FILMOxford in 2019

You can view the film HERE

Naomi MfOR film
Naomi Morris – film still

 

Professional development decoded #creativecase #actuallyautistic

a woman with short hair and glasses talking and gesturing in front of a small group of people

 

Professional DevelopmentProfessional development and funding bid success as an autistic artist is a long road.

I’m back at the coalface of the Grantium portal, but this time I’m making a higher level funding bid for a complex socially engaged project very close to my heart.

Once more I feel I’m facing Everest. The step up feels immense as I gradually absorb the additional requirements and scrutiny that a higher level bid demands. Yet if I don’t go there how do I continue to develop as an artist and project lead?

But in going there I am uncovering (all over again) exactly how biased against autistic artists this application process is.

I learned (with inordinate difficulty) to write a £15,000 and under bid. I blogged and made a video documenting my process. I understand – this is public money – that it’s not easy. I understand that in asking for more public funds it will be harder.

I just want to say how very much more difficult it is when you have a hidden disability like autism because many micro tasks are involved each one representing a barrier (I’m not kidding). Our challenge with executive function can be great – it can also oscillate, meaning there will be times when we can manage more or less. One thing is certain, as tasks accumulate we become overloaded and overwhelmed. Recovery from overwhelm takes time and of course the tasks involved don’t go away. We are inordinately slowed down and may lose the will to go on.

I felt that yesterday. But I know I won’t give up because my practice is driven by an inner compulsion – I won’t be beaten but my efforts are extra (not ordinary) and this should be recognised. It all takes it’s toll – including falling over and getting a black eye.

Yesterday, in supporting another autistic artist I happened on a brilliant talk by a relationship manager about funding bids. A serendipitous but random event, which made me aware for the first time of the mysterious ways of this vital support for artists. I’ve spoken to a relationship manager on the phone (so helpful to my first bid), but I have never met one before – they’ve seemed progressively more elusive and shadowy figures (the cuts!) who were once available but are now not so much. Some NT artists/ arts professionals I know talk about them as friends and contacts but this has always seemed foreign to me as so many (seemingly random) examples of social relatedness in the workplace do. The social labour involved in such relatedness is often beyond me. These are the hidden codes.

And this is the point – as an autistic person I can’t relate to shadowy figures, to people obscured in far flung regional offices, who may well be part time and/or work in multiple locations. People whom, from Oxford say, you may need to get to Brighton to see, or catch them on the phone on a Tuesday, or pre-arrange a Skype call with.

I get vertigo just thinking about it. The organisation and planning involved in accessing such a ‘moving target’ represent a barrier. Arts Council England, you are giving me more micro tasks.

At the meeting I see before me a dynamic young woman and I understand for the first time that there are people out there who can help me, really help me. People who I can talk to about my project, really talk to. I ask for the diversity officer’s name. It’s thrown to me quickly mid talk and I write it down but of course, this was not the moment for contact details.

Arts Council used to list them on the website I’m told? But now they don’t because…the reason given was impossible to process and is obscure to me.

So now you have to ring up or write to get contact details. I sigh. I sigh one huge and heavy sigh. I feel a potential ramp falling away.

Arts Council England – you have a beautiful shiny section on your website about the creative case for diversity. I’ve seen your lovely video featuring wonderfully diverse voices. It makes me glad, but I am so very frustrated.

You do not list your relationship managers (with at the very least email contact details) up front on your website.

In failing to do so you give autistic and neurodivergent artists like me more challenge – you obscure for us a vital source of help. We may not be able to access the brilliant helpline you provide, we might just not be able to write that email asking for contact details – so much to say here about why not but I don’t have the time. I sat before the relationship officer, in this room of arts professionals thinking I want to train you. I want to be commissioned to write a report. This is only one tiny aspect of what’s wrong with the application process as it stands. SO much is taken for granted and works against us.

The main point here is essentially, and it is essential, that we may not pick up how important it is to access relationship managers, we may simply not clock them as a vital part of successful application processes because we can’t SEE them. For many of us seeing is vital to knowing.

Something so simple and so vital to many ND artists could be changed with a tweak.

I find it so very neurotypical to have a showcase list of relationship managers on the website with nice pictures and  a paragraph or two about working for ACE. It’s quite lovely but the list is incomplete and there are no contact details.

You’re almost there Arts Council England – I urge you to go for it and give ND artists another route in to making contact with the people who – not only can they make a difference to your application – but with whom you can have an ongoing relationship (yes – radical news for some of us) about your professional development.

Alleluia – I finally got it. My next step is to track down the diversity officer I so want to talk to about all of this and so much more.

WEBworks at Modern Art Oxford

a black and white photgraph of a woman sitting on the floor pulling on a tangle of ropes some of which are wrapped around her body

Photograph of an informal performance at Modern Art Oxford’s gallery spaces in response to the Hannah Ryggen exhibition Woven Histories, by WEBworks artist Naomi Morris. Session facilitated by MAO Galley Manager, Kay Sentence. Continue reading

Out of the Ashes – Sonia Boué’s talk for TORCH at Pitt Rivers Museum. #autism

autism

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

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.

TORCH panel
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.