The Duck, a production by Autact Theatre Company, is a remarkable play, and, going to see it at the Stroud Theatre Festival last week, felt like a significant cultural moment.
Playwright, Rhiannon Lloyd-Williams is a late diagnosed autistic woman, and she forms part of what has been termed the ‘lost generation’ – I count myself among their number. Our diagnosis’ have been delayed into adulthood through cultural ignorance about autism as anything other than a series of stereotypes which exclude us. I won’t list them here, but suffice to say that males, savants, and geeks have dominated the cultural landscape (through no fault of their own, I might add).
Before continuing I want to state that this review is not the place to detail issues of gender identity within our community (which have also fallen under the radar). This play is not about women, it’s about one woman.
The play opens at the moment of recognition. I’m a duck! The duck in question is a metaphor for autism, and for 50 spellbinding minutes the audience is immersed in the thought processes of an autistic mind. For some of us (autistics) this is familiar territory and we can insert our own detail and nuance into the narrative. For non-autistic audiences this is instructive, in the best sense of the word. The play is not didactic, and the learning arrives through the offer of empathy – Lloyd-William’s brilliance is that she enables the non-autistic person to inhabit her mind, to loan it (if you will) for a brief yet vivid moment.
This is a one woman play, and actress, Lucy Theobald, gives a quite extraordinary performance. Coached by Lloyd-Williams herself, there is a sense in which she acts as her avatar. Theobald is her physical stand-in, complete with ‘stims’ (the gestures we often rely on to regulate emotion and sensation), but also allows the playwright the necessary distance to write from the gut. There are no punches held here.
As the diagnosis unfurls we are treated to the rawness of a lifetime of alienation which is unknown in origin. The torture of autism as a condition not yet revealed is really in the not knowing, which provides a vacuum for self-blame to be sealed in as tightly as superglue. My own experience is that unlocking this knowledge is redemptive. It was never autism that troubled me. I now understand that my difference is simply another way of being human. Not all autistics will share my sentiments but we can unite on the core message of this play.
I sat and squirmed as the labels which had been conferred on our heroine in the place of ‘duckness’ were rolled out in a devastating sequence. My own label was ‘naughty’. My poor parents were not to blame. They weren’t to know why I ‘disobeyed’ them royally – and did the opposite of everything they asked me to – and to their great credit they still found a way to love me. Such labelling and misunderstanding of our behaviours can be immensely damaging and even threaten our emotional survival. Our heroine makes a passionate plea to peel back the labels in order to understand and accept us.
My favourite passages of this one act play are when Lucy Theobald revs up the theatrical encounter, breaking the forth wall. Autistics are supposed to struggle with communication – and so we do at times, especially when asked to do so in conventional manner. Lloyd Williams breaks this assumption with the sheer articulacy of her writing, Jo Loyn’s direction of Theobald to engage us with eye contact and pointing underlines the point; and so the table-turning begins! Audience members are questioned (rhetorically), and drawn in to the heart of the action. We’re both inside her head and onlookers – I honestly don’t know how the author did this.
In many ways this is a confrontational work, but the beauty of the writing is that the voice is gentle and the audience is held. I like to be in two places at once. I’m prone to wriggling in my chair and casting my eyes about the room. I am also fond of observing faces and was treated to a section of the front row, which curved around almost facing me (albeit from some small but helpful distance, as I sat at the very end of the middle row by the door). I saw three things; wonder, care, and compassion. I might have glimpsed discomfort (but it was fleeting and productive, I felt).
What you want in a production like this is to feel safe while being challenged, and it’s a fine balance to achieve; so it’s all the more impressive to find it so deftly handled in a debut play from an emerging writer.
What I saw on those faces, now embossed in my minds eye, were the flashes and flickers of shifting emotions as Theobald dealt out the play’s denouement. A twist autistics will be familiar with (but no less thrilled by) and which will leave unsuspecting non-autistics gasping. No spoilers from me.
I am reminded of my own debut speech as an ‘out’ autistic person in which I declared myself a person in translation. My audience feedback was that I had changed perception – that they would never think in quite the same way again.
This is what I think the incredibly talented Rhi Lloyd Williams has achieved with The Duck – a paradigm shift. As a blogger on autism (at Autism and Expectations) she is immensely popular and widely read on a global scale because she has a rare capacity to straddle neurologies with writing that is also beautiful. She is also a poet and a performer.
As an autistic person who (disclaimer) is also a friend, my one wish for the play (in the moment) was for the author to act the part. I quickly saw why for many practical reasons this wouldn’t work. The remove, in working with an actress rather than making this a performative piece for the author, reveals itself as the production’s strength. Theobald’s embodiment of Lloyd William’s words is an extended act of empathy, as I suggest at the top of this piece. She leads the audience in a parallel act.
This is not the usual autism shtick so many autistic people have come to dread, which only serves to feed unhelpful stereotypes. We’re tired of Rainman and The Curious Incident of the Dog in the Nighttime. This is something wholly new. An authentic voice has emerged, and it’s my fervent wish that The Duck can be seen and heard in many venues across the land.
The Arts Council England funded Museum for Object Research and WEBworks collaborative project, NUNO (Neither Use Nor Ornament), is also proud to count Rhiannon Lloyd Williams among our WEBworks creatives as Poet in Residence for the project.
Professional 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.
I grew up loving words and their meanings. From a very early age they gave me the means to quantify and describe an often puzzling world that spun around me. Sometimes this was in an unchosen silence, unable to share when I couldn’t cope with the outside world, an internal pleasure just for myself. Being synaesthetic I often found these descriptors were pale shadows of reality or just didn’t exist so I invented my own and appropriated others. Also a child I was continually asking questions about the meanings of things and secretly building this fragmentary detail into my own bigger picture, a ‘world’ taxonomy that would come in very useful later in life. To me as a child, language meant life.
I’m not saying it was all plain sailing as my ability with language and word lead to issues at school. Whilst I could answer questions quite eloquently when able, my written work was poor and I often often opted for words I could simply spell rather than those I really needed. I was often called stupid or I would hear the word ‘lazy’ used. (actually I’m just dyslexic and autistic and it was never picked up.) I sought solace in nature and especially geology, becoming a palaeontologist – stones don’t lie or let you down.
One day aged 11, my teacher tore up one of my pictures up in front of the class because I spelt my name wrong. What cut me even more than the loss of a single image was the fact that he said ‘I would never amount to anything’. That day my dignity and dream of becoming an artist died. I learnt that these precious things called words could hurt and that ‘sticks and stones may break your bones but words will never harm you’ was a complete lie.
It also caused trouble in the playground because as a teacher had humiliated me ‘with words’ it had seemed to give permission to my fellow peers to do the same and some did with glee. What I really hated though was that I felt misrepresented, that they hadn’t given me a chance to prove myself or my ‘inner me’ that I soon learnt to keep hidden. I knew I was different and so did they. Oh and by the way I don’t have a normal person inside me longing to escape my inner me is 101% autistic.
Language can be either heaven or hell, and for people who don’t seem to fit a society or are different, it may become a clear and present danger. If something is said again and again and again even though it’s untrue or a stereotype or a misrepresentation it soon may become an ‘apparent truth’. Words can be used as seeds to engender hope within a single person or as a seed of desecration, repression and othering in preparation for the loss of generation. History has shown us where relatively simple words of hate can lead. One powerful group in a society deeming ‘others not human’ and ‘useless’ thru the media or policy. We should remember this every January on Holocaust Memorial Day for example.
Mostly I don’t really have an issue with the word autism but I do have a problem with the way it’s often used. Until we change the traditionally used wording towards autistic people to the preferred language used by autistic people, the stigma and othering I feel will not stop. I don’t ‘live with autism’ for a start, I actually live with my wife and two cats. I didn’t ‘acquire autism’, it’s not a handbag or a pair of shoes. I don’t ‘suffer from autism’, I just have to suffer the attitudes of people who seek to misrepresent me or plainly don’t understand the harm they cause us. I do however live with and suffer from PTSD caused by poor attitudes towards me as an autistic person.
It’s very easy to seem comic, flippant and literal about these things but language engenders attitudes and attitudes engender the way you accept or reject people. I’m not a person ‘with autism’ I’m an autistic person. It’s not separate from me because that suggests that I can lose it, cure it or rid myself of it. What’s worse is it implies that others can do this to me. language Imposed on any other minority would be seen as unacceptable so why does it seem such a ‘free for all, towards autistic people?
I personally feel that that the language used towards us should be driven by autistic people, ‘our language our narrative’. I also feel you can tell the attitude of an organisational or individual towards autistic people by the language they seem to use. If an autism organisation doesn’t listen to the voice of autistic people and carries on using language that we may find offensive that simply says ‘we don’t care about your opinion’. Do we need organisations ostensibly for autistic people who don’t care about our opinion?
I also really dislike the way some come back at autistic people who choose to use identity first language with a ‘cancer’ argument. I won’t say much here other than it’s not acceptable and is I feel disrespectful to all concerned. We are talking two completely separate things here. The analogy is incoherent and again shows a lack of understanding on behalf of the people who use it.
I feel there is also a lot of misunderstanding around the use of the term neurodiversity and it seems to be becoming a bit of a buzzword without people really understanding it’s taxonomy. Neurodiversity encompasses all of us like biodiversity does the life around us on this planet.
A single animal cannot be described as being biodiverse, a cat cannot be everything at once but it is part of biodiversity. likewise a single person cannot be neurodiverse as they can’t be both neurotypical and neurodivergent at the same time. However a group of people can be neurodiverse just as a specific population of flaura and fauna can be biodiverse.
People often ask me what’s the biggest change we can make towards autism acceptance or understanding and I say it is modifying the language that people use towards us. And after that they need to except that they don’t understand what goes on in ‘our heads’ and listen to what we need not what they project on us, double empathy. Both these go hand in hand. If an organisation refuses to listen to autistic people and won’t change their language or perceived attitude then they’re not an ally, in fact they’re part of the problem. Conversation between all sides is so important as we won’t obtain autistic ‘emancipation’ without all agreeing but that needs a common language.
I don’t need modifying to be a part of our society rather than apart from society. I just need accepting the way I am, something that seems incredibly hard for some people to get their head around. Society should be made ‘fit for us’ not for us to have to ‘fit in’ with society’s wishes or traditional stereotypes and misinterpretations. Society really should except and embrace difference, along with the self-descriptive language chosen by any minority’s concerned.
Yes we are all different, an incredibly positive and enriching thing and for me confirms the fact we are all just simply human.
My Autistic Professional Template also formed the basis for Sonia Boué’s, Out of the Ashes talk for Oxford University TORCH.
Sonia Boué reports on her recent Arts Council funded project.
Introduction
I am a professional autistic artist and creative project lead. I form part of what has been termed the “lost generation” – 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.
The following is the result of a six month research and development project, funded by Arts Council England. The aim of this research has been to create enabling conditions for my project work, and in particular in my role as lead artist, because there are no blueprints currently in existence for this kind of work.
My thoughts during this period have often been guided by Brent White, Director and researcher on autistic leadership, at the ACAT: Ala Costa Adult Transition Program, on the Ed Robert Campus at Berkeley.
Professional mentoring has been provided by Miranda Millward, and creative mentoring by Sarah Mossop.
Freelance arts project work is often by nature informal, characterised by highly individual working practices, and mainly without clear structures. Autistic artists need Arts Council funding to create self-led projects from which we can 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. Navigating this world requires a well constructed set of practical measures.
There is a great variety in how we present. I therefore make no general claims for my template – it is by nature ‘me’ shaped – but I anticipate that my experiences will resonate greatly with many autistic freelance creatives and help inform the arts organisations who hold our employment and opportunity in their power. 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 this funding barrier, and yet the early to mid term circumstances of my project proved disabling. Access was also impeded by factors beyond my control which were unrelated to my autism, and the emerging model for my work includes experienced and trusted neurotypical mentors to identify and troubleshoot the elements of my projects that autistic navigation systems can’t reach.
My project clearly signals the need for rights based approaches rather than relying on informal knowledge and conversation to gain access when working in close collaboration across neurological type and attempting to lead a team in a freelance context.
Autism as culture
Autism is both a neurological and cultural difference, and the disablement of autistic people at work is an ongoing civil rights issue leading to inequality and an increased risk of mental health problems. We are a small minority with a unique social difference. We live within a dominant culture, which runs almost exclusively on social aptitude of one kind. This culture is pervasive and disabling to us in ways not easily recognised or understood by the majority.
But those who work with us don’t necessarily have to understand us on an individual basis. They 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
itself1.
In an ideal world our needs should be accepted without question and active measures taken but in reality they are mired in social complexities. Ours is a pioneering generation tasked with beating a path for ourselves and future cohorts of autistic professionals.
These are rights based issues, which we are currently forced to navigate via the very social codes which disable us.
Deconstructing the power imbalance
“I should not be subjected to this stress on my own project.”2
Aspects of my experience stand as a cautionary tale. The earliest iteration of my project began to flounder on the question of inclusion despite this being it’s primary goal.
The bare bones of my situation were that I had agreed to work collaboratively on the understanding that the project would be shaped around my needs but this proved impossible in practice. I had lent a creative idea and my ‘neurodivergence’ was the rationale for funding but nonetheless my needs were submerged. This rendered the original project proposal unworkable.
As an autistic person I must adapt myself constantly to engage with the ‘neurotypical’ world. In research terms my question became – what happens when I stop this process of constant adaption and ask for the accommodations I need to work accessibly so that I am not disabled in this situation?
In practice this did not work out – quite the contrary – and my energies continued to be painfully directed toward my own adaptation.
In general terms we need a wider understanding that effective inclusion is a two way street of adaptation. Accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us. The level of adaptation this implies will depend on how close the working relationship needs to be and the kind of access required. 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. This can be because our difference is not convenient to others.
There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the double empathy bind (Damian Milton)3.
Project leadership and design
“None of this is not stressful for me.”
To lead and take responsibility for funded projects I need to work in ways which minimise anxiety because it can become disabling. High standards of professional practice can be extremely helpful in this respect.
But my project had placed too much reliance on one key point 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.
I invested a disproportionate amount time in unpicking differences in collaborative working styles and finding ways to communicate my needs. But the continuous struggle to negotiate working terms and chase schedules was negative and eroding. My project appeared to be built on quicksand.
I attempted to modify the project design and consulted my mentors, but in access terms, my ramp was broken and I was disabled on my own project.This experience has enabled me to identify my need for more direct access routes and a hands on approach.
My highly logical thinking style, my ability to see priorities clearly and my intuitive grasp of sequence and method are also key factors in considering accessible project design. Not being able to work towards outcomes logically and intuitively at my own pace stalls my brain.
Identifying that I am a global and immersive thinker means I can now design my projects around my strengths. Holding their shape in mind as I work on each part enables me to drive priorities and achieve the exacting standards I require.
Any project in which I play a lead role will need to accommodate this profile and be shaped around my needs. In order to remain functional as a project lead I need my collaborators to work around me – and not vice versa.
This was the key to my disablement during the early to mid term of the project.
In addition there was a significant neurological imbalance on the project as I was a lone visible autistic. When my project hit serious access difficulties I realised that I needed to recruit my own ND/autistic team to create a more level playing field.
Social labour
“Its not that I don’t want to be friendly, its just that I get exhausted.”
Prevailing social norms and expectations come at no additional cost to the wellbeing of the general population. But when we adapt ourselves and ‘mask’ autism to gain entry into the workplace we do so at great cost to ourselves.
In the informal freelance arts sector I have found that there can be a high reliance on ‘neurotypical’ friendship codes and relationships. This can block access on many levels for autistics who can’t mask, and be ultimately disabling for those who can. Our inclusion can depend on pleasing others which can be difficult (if not impossible) to sustain and can be classed as social or emotional labour. Autistic access needs can be socially misunderstood due to the emotional needs of others.
But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work. When this became overwhelming for me I found that establishing rules for contact helped manage this and keep me organised. I was able to filter interactions by limiting contact time and channelling communications to one email address.
These are effective strategies to carry forward into future project work.
As a more general point, when considering social risks in addition to potential ‘social overload’, for autistic artists there may be a particular difficulty in gauging digital vs realtime contacts (where it is easier for potential co-workers to misrepresent themselves). This is pertinent as we can tend to rely on digital online networking. Properly testing relationships is a further barrier for us to overcome.
Autistic flow vs timetabling and task based work
“I feel cut up in pieces and dismissed.”
I now understand why all my primary school workbooks are empty and peppered with phrases like – good start Sonia, but where’s the rest of your work!
I experience autistic flow as a very specific state achieved by working with rather than against my natural thinking styles. This flow is continuous, often prolonged, and can involve a related state of hyper-focus. The degree of focus which can be achieved is (I believe) atypical.
A potential problem with this in working across neurologies is that there can be an unequal focus of attention on a shared piece of work. Unless sufficient catch up time is earmarked, I’ve found it can be hard for colleagues to keep up with the fruits of flow. I would not in future embark on a significant piece of close work where this focus is not well matched or without a suitable catch up system securely in place.
Flow is what allows me to develop my thinking on a topic or a series of related concepts, it is efficient and necessary for me to stay organised and productive.
During my research I found the demand for me to accommodate working practices which relied on timetabling work (to someone else’s schedule and priorities), and task based approaches (to work through and share core project developments) stalled communication. It also undermined my ability to think and I begin to lose functional capacity.
This learning allows me to factor flow into future project designs.
Mental Health and training.
“I’m at screaming point.”
I soon felt like a canary in a cage. I thought often about how miners used to carry these birds with them into mine shafts and tunnels to detect poisonous gases. If the canary keeled over they knew to get out.
When conditions become disabling we can easily become pathologised. My anxiety became acute. I considered seeking mental health advice when what I needed was to take a break from collaborative work and redesign my project along autistically accessible lines.
My project began with good intentions but relied on an informal knowledge of autism, and in addition had encountered an unexpected and decisive roadblock which was not autism related.
In future I would build externally sourced autistic-led training into project designs for close colleagues. This would both help support my access needs and take some of the pressure off personal explanations. The risk of colleagues misunderstanding autism can be great and can come at a very high personal cost.
I would build mentorship in at the planning stages of any future collaborative work.
Self translation, masking and trauma.
“Every communication is an act of translation.”
Being autistic in a ‘neurotypical’ world demands profound acts of self translation which, although mainly conditioned, are carried out with apprehension and painstaking care. We must often mask or otherwise camouflage our autistic selves to gain social acceptance and access to work. But this is exhausting and destructive in the long term.
It is genuinely hard for colleagues to understand this because autism can present invisibly. During the writing of my Arts Council bid it had been necessary to build up and prioritise my autistic template against a tendency for it to become submerged. With hindsight I can see that these were the origins of what would become a constant struggle.
It was deeply distressing to me to find myself invisible at key moments on the very project which was intended to support my needs. I turned to the poetic form. Publishing on my blog has been a constructive means to articulate my struggle and regain a sense of balance. This has been a highly successful strategy providing an effective means to communicate about autism to a wider audience.
But the circumstances of my project had become traumatic and aversive to me.
Autistic artists as a group have been earmarked as a funding priority by bodies like the Arts Council for good reason. I found that our struggle 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.
Strategies
“I feel the need to languish in autistic spaces.”
Taking time away from problematic areas of the project was greatly beneficial to my thinking as I needed to arrive at autistic solutions. My mentors helped me asses the difficulties encountered and encouraged new areas of development on the project.
Mentoring also provided me with the vital ‘neurotypical’ perspective with which to decode the situation before me, enabling me to process and navigate my way through it. I was thus more able to gauge which elements of my challenge might fall within the range of problems of translation across neurologies, and those which were other.
Blogging brought in autistic contacts and I began a networking initiative for autistic artists called WEBworks, which aims to offer support with professional development. This is an important outcome from my template work.
My project was originally designed to lead to future large scale and ambitious outcomes in prominent venues. But such spaces can be wholly inaccessible to autistics. Like Don Quijote tilting at windmills, I had been persuaded (by various forces) to lead the way to doors which were closed to me.
I took the reigns of my project and began the job of reshaping it along accessible lines. The result of all the hours spent analysing my project was a solid paper trail from which I have been able to retrace my steps and find my way again.
Conclusions
“I feel like saying sorry my autism is inconvenient, but that would be ridiculous.”
It is easy to talk inclusion but harder to act inclusively. With autism we face multiple challenges in demonstrating and articulating our needs as both cultural and biological in origin and expression.
Our needs may be considered hurtful, ‘antisocial’, and can be easily misconstrued and dismissed by the majority culture. Rights based approaches, education and training are (in my view) likely to be more constructive pathways to more successful inclusion than explanatory routes which can be derailed by the double empathy bind.
I have found that it is extremely inadvisable to rely on an informal understanding of autism and inclusion rights in a serious professional context where access is at stake. Reliance on informal arrangements can leave us vulnerable to disablement and mental health risk.
As I tipped the balance of my project towards accessibility I began to understand that truly effective access design may be almost indiscernible. The smartest design will be the kind that fits so well as to be virtually invisible. Designing projects around our unique neurological profiles would take us closer to this ideal of best fit accessibility.
To arrive at such best fit solutions the space to think and plan autistically is needed.
Elaborating access around more dominant or typical goals and assumptions risks ill-fitting and potentially counterproductive project designs. It also runs counter to the very identity politics which many late diagnosed autistics seek to embrace. We don’t wish to be enabled to be more ‘neurotypical’, a point which has particular resonance in creative practices.
My research suggests that issues of identity, accommodations, and project design are likely to be closely aligned – and that what we need as a group are most probably holistic designs for holistic thinkers. This understanding and related insights will be carried forward into my future projects and form the foundations of my mentoring and supportive network development with the WEBworks group.
I can now share my research and attempt to inform a much wider conversation about neurodiversity in the arts in the freelance sector.
1. https://leavingevidence.wordpress.com/2017/08/06/forced-intimacy-an-ableist-norm/
2. Quotations under section headings are from my field notes.
3 On the ontological status of autism: the ‘double empathy problem’ Damian E.M. Milton, Pages 883-887 | Received 08 Jun 2012, Accepted 13 Jun 2012, Published online: 16 Aug 2012, Download citation http://dx.doi.org/10.1080/09687599.2012.710008
This photograph was taken outside the Magdalen Road Studios project space Filament 14, during MfOR’s mid term gathering of artist proposals.
NB. The poem in this blog post first appeared on my (Sonia Boué’s) The Other Side blog site, which is where much of the material about my research on the autistic professional template for MfOR can be found.
So we’ve reach a mid term point in our Arts Council funded research and development for MfOR. Where have we got to?
My professional template research was planned to take place alongside practical development of the MfOR project, but in practice has been so radical in it’s findings that a reshaping of the project has been needed, which continues to evolve.
The key questions to emerge – what is an autistic-led project, and have we designed one – were not even framed at the outset, let alone tested.
The answer to the latter is that we haven’t, because (Catch 22 alert) we didn’t know what one looked like before my research began.
Due to prevailing norms we’ve designed a predominant neurotype (PNT) project, based on PNT principles – which (by definition) are largely disabling to an autistic person/professional.
Redesigning the project is therefore a process – ongoing.
In a nutshell, MfOR began as an optimistic experiment with my autism, yet I was from first principles unwittingly disabled by my own PNT influenced project design.
Autism is a non-trivial human difference, and yet PNT systems are so embedded in the everyday that one is easily wrong-footed and (in very real terms) dis-abled despite being a perfectly competent autistic human. But however competent I may be, I can’t project lead while disabled.
Fortunately, part of my particular humanness is a heightened ability to focus, analyse, unpick and reconstruct. My ‘condition’ (if it is such) makes me a creative troubleshooter par excellence – I have to be to survive.
The job right now is to allow space for this thinking to unfold. I’m discovering so much about being disabled, about the absolute wisdom of the social model of disability and – more importantly still – how non-autistic humans become disabled in autistic spaces. This really does work both ways.
I hope the Arts Council – if they’re watching at this stage – approve that much of my working through of this thinking comes via the poetic form. My last ACE funded project Through An Artist’s Eye had poetry as a core professional development goal for improvement in technique and confidence. Hey, Arts Council – that was money well spent, and this is too. I can’t think of many more important cultural causes than a true investment in diversity. I’m so grateful for the opportunity to carry out this difficult, challenging and significant work – which I hope will be of benefit to others. The personal and professional development for me is proving immense.
Here is the preamble to the poem from The Other Side.
“The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.”
Sonia Boué
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Perfect Storm
Dawn brings the perfect storm.
And skylights catch droplets in rapid succession.
Yet I am deaf to their timpani.
Undoing the stitches of my carefully fashioned…
…tailoring…
I have spoken for the first time of my disability.
A pointed conversation.
But what of…
…my ‘intelligence.’
Yes! I say (quite shamelessly).
I do have one.
And degrees and so forth.
(Despite scoring zero for I.Q.*)
And, what is more,
I often soar above you.
(The aerial view is our prerogative.
Including the ‘voiceless’ and the more visibly NEEDY.
Sharing a something you can’t reach.
Ah yes – a club of sorts.
Seemingly without a fee.)
And perhaps this difference.
Well. It’s irrefutably so.
Is. Also. Your. Disability.
The places you can’t go.
I am disabled.
DIS-ABLED.
But by what?
And by whom?
And.
What (I ask myself).
Does.
My.
Disability.
Mean.
For.
You.
Well…
Perhaps.
And. Most certainly.
I can read it.
In the symbiosis of our smiles.
And we can act like kittens.
Playing with string.
Until it’s time.
To bring the dead bird in.
A trophy to trying.
A cup to greet the day.
* My cognitive profile is not measurable as an IQ score.
P
