January 9, 2020 § 1 Comment
So last week I went to the fantastic closing event (conference) organised by Disability Arts Online as part of the Contested Spaces exhibition, at the Foundry in London, curated by Aidan Moesby.
Access arrangements were superb and the event was pithy. Succinct, and brimming with content, it was concluded with a quite beautifully poetic performance by Malgorzata Dawidek. Aidan deftly chaired the panel, which featured Jennifer Gilbert, Ashok Mistry, and Elinor Morgan. I came away enriched and energised.
I was especially struck by the lack of critical review for disability arts as a topic – though I’m a relative newcomer to the field. This is a good moment to say that I’m autistic, and that I can’t claim to speak for anyone but myself, and that I will focus on critical review in my blog post.
Jennifer Gilbert highlighted some shocking examples of ableism in mainstream reviewing of disabled artists, Elinor Morgan suggested strategies for disabled artists to gain access to feedback and build confidence, which might in turn lead to critical review. Raising the quality of our work was also touched on in this context. I will come back to this.
I was pleased Ashok Mistry spoke about having something to loose in engaging with the art establishment for approval – our very difference is precious. It is. Our very difference is our sometimes very ‘marketable’ USP (unique selling point), among other arguably more important things. I can’t think of anything worse than contorting the self to fit in. Surely we need to infect the ‘mainstream’ with our glorious USPs rather than try to second guess it.
I left the building with Artistic Director of DASH, Mike Layward, who kindly saw me to Marylebone Station. I’m indebted to our conversation for helping me articulate what I think I feel about the critiquing of art made by disabled artists, certainly I feel it about the area I know best, autistic creatives. We are all of us outsiders by default unless masquerading as…well…just artists.
Someone (I think it was Mike) had earlier pointed out that Frida Kahlo has been assimilated by the mainstream through the erasure of her disability despite it often being her subject.
Another good point which I hadn’t considered was raised by the panel that critics can be frightened of reviewing us because they might ‘get it wrong’, thereby causing offence and also loosing credibility. Time for some tough love. Do the work. Research the field, don’t avoid it. Yes, it can be quite hard to get it right, but a lack of familiarity with disability issues as an excuse in 2020 looks as weak as a used teabag. Get on with it, because here is where the good stuff often is!
I’m autistic, so as usual I experienced a lot of upside-down thinking about this topic. I so appreciated Ashok’s comment that he’s a professional outsider! Okay, critical review is important. Informed critical review can be vital to a career, but the uniformed critic who’s anxious about getting it wrong isn’t what we need. I say this as someone who supports neurodivergent (ND) artists professionally. Often the job is to unpick the barrage of unhelpful mainstream ‘critique’ they’ve experienced over a lifetime.
These nascent artists need nurture, and perhaps most importantly autistic artists may not find conventional critique/ review helpful as a form – though of course they may benefit from exposure. It isn’t just that we need to build ourselves up. There can be a genuine cultural difference, I’ve found, whereby our need for input is simply that – different. So I think we need a range of methods for evaluating and elevating artists. ND artists may not need conventional critique so much (because it may misread or prove irrelevant to them) to improve the quality of their work, but may perhaps benefit more from access to the kinds of resources which enable better production values. Quality issues (if they exist) may be about being cash poor and unable to invest in materials or production processes. That’s not to say that encouragement and tailored mentoring aren’t vital. They can be. It’s just that the current model for artists’ elevation via critique and review is like the hotel elevator that ain’t working. We often don’t get off the ground floor and I wonder if this resonates more generally for disabled artists? What would really help you, is my question.
Little about the way many ND artists work best is reflected in neuro-normative professional practice. There can be a great deal of unlearning to do in unshackling ourselves from these tyrannies. Perhaps more needed than conventional critique is help in understanding neuro-normative codes. It’s very simple, you can’t be expected to navigate what you can’t see or even begin to process. The current system is completely weighted against us.
So my heart sinks a little at the idea of chasing conventional critiques – though ironically if my most recent DYCP ACE funding bid is successful (very slim chance), I will be doing exactly that thing, but doing so autistically and on my own terms! Surely the best critiques consist of dialogue and if reviewers are frightened then that’s a sign that such a dialogue is lacking.
So, what’s needed first is a culture shift, and projects or initiatives which dare to throw stakes in new ground. Critics need to understand what they’re viewing if they’re to be any good to us. Review isn’t just about exposure, it’s also about framing. Ah yes, and it’s about bums on seats, which is an area I haven’t yet touched on and probably won’t for lack of time.
Ashok unlocked something vital when he talked about the need for us to be allowed to be our ‘messy’ selves (forgive me if I haven’t paraphrased you correctly, Ashok!) For me this is the key to making a necessary 360 degree turn.
Critics need to know what they’re looking at to get it ‘right’ and be helpful. It goes without saying that we need disabled critics and curators, but we need ally curators too. I hope that if some of the Shaping the next ten years (Arts Council England) policies go the right way we may see a real development of ‘hybrid’ ally professionals along with more of us (of course!) I’m very keen on collaboration as a way forward.
In the field of invisible disability (which has a shorter history) I feel we are in a useful moment of transition where disruption can occur (and I hope this resonates more widely with my more experienced disabled colleagues). I don’t think that what we need is judgment on abled/neuro-normative terms, but rather that our products must be allowed to flourish as they need to and be equally valued. What I feel we need is opportunity on our own terms to create what we believe to be good, which may be very different from the current mainstream critical agenda.
We also probably won’t be equal until the boot is on the other foot and the ‘mainstream’ values and seeks out what disabled curators and critics think about its cultural outpourings. Dialogue is all.
I began my 2018 catalogue essay for the Shadowlight Artist’s Arts Council England funded RISING exhibition with the following provocation.
“What if everything you ever thought about learning disability is wrong.”
A power imbalance exists because the ‘mainstream’ gaze monopolises and is uninformed. It creates insiders and outsiders and is extremely outmoded, as Drag Syndrome are currently proving on the global stage in taking it by storm.
I think the conversation has probably moved on already and it’s now for the ‘mainstream’, so-called, to catch-up if it can.
December 15, 2019 § Leave a comment
Those of you who know my creative work will know that I’m haunted. Yes. I live with ghosts.
I’m going to share a secret. I talk to a handbag. I’ve even written letters to it. No, I’m not loosing my marbles. In 2013 my grandmother’s handbag came back into my life and whispered in my ear. From this moment my life changed and my art practice blew wide open. I knew what I had to do, but I couldn’t guess where it would take me. I’ve just commemorated 6 years of works responding to the Spanish Civil War and my family’s political exile. Previously unspoken, I’ve sought to bring to light this history in order to understand my heritage and heal trauma wounds.
My practice has come a long way, but since those first whispers in 2013 – in which the rise of fascism seemed more historic and remote than it does today – a curious echoing of past times has struck me again, and again. Incremental, creeping closer, and ever more distinct, the feeling of deja-vu pervades. It announces itself as a sudden chill, or today as a moment of terror in reading about the multiple ways in which this brand new Conservative administration already threatens to mimic all that our American cousins have endured in their President for the past 3 years. As if we didn’t already know that Boris Johnson was the perfect UK double for Donald Trump.
My 6 year haunting – yes, I live with my art now and am surrounded by ancestor talismans and tokens – begins to feel prophetic. My grandmother has been whispering through her handbag for so long now that sometimes I admit I haven’t always heard her. Life became full at times and I forget to listen, but believe me I won’t be making that mistake again. Abuela (as grandmother is called in Castilian Spanish) is tugging at my sleeve.
I know that she will show me what to do, and this is a great comfort, but she’s taken great care to remind me how quickly the wind can change which is unsettling too. She knows the supreme value of preparedness because she’s survived a Civil War. Abuela will guide me in her gentle way, and then fasten her apron strings to make us cafe Bonbón. She knows how to cajole, but from now on she has my full attention.
The atmosphere of sudden departure is in my DNA. My family fled for their lives from Spain along with almost 500,000 Republican Spaniards when the fascist dictator Franciso Franco seized power in February 1939.
I know that I must ready myself in whatever way I can. History repeats itself, this we know. I’m not prophesying war and catastrophe, I’m obeying the unspoken laws of my DNA. I know I’m not leaving tomorrow, but I’m vigilant and quietly offloading. I have already asked myself what I could fit into packing cases and would there be time and money to ship my work? These are unknowns. A crossing of bridges.
Abuela smiles her approval. I look at the jewel-like object I know I would take with me no matter what. It would be my father’s only known/surviving painting from 1950, shared on Instagram just yesterday @s_boue, which also features in the image above. Abuela pinches my cheeks affectionately, and I’m suddenly taken back to the memory of my father sitting under an acacia tree writing while we were on holiday in Spain in 1972. He would have been writing something other than his his plays, as by this time he had given up on playwriting for the sake of his mental health. I’ve come to view his exile theatre as creative resistance, and I increasingly see my own work in the same light.
Abuela beams at me. I’m old enough for these truths to be known, but then a shadow passes over us and her face becomes suddenly sombre. Fascism creeps in through the back door, she says with a shudder. I nod. It begins with fear; of what you read in the newspapers and what you can no longer say freely. I understand now without her saying it that these 6 years have been a preparation too. All this time I have been on a parallel mission of making and packing, and leaving a trail for future generations – as I now realise that my father did in his time.
Life and art are never separate, not even if you try to wrench them apart. It’s been a long time since I wrote in quite this way, but we are living in increasingly frightening and unsettled times. My blog is a call for preparedness, but above all for creative resistance. Finding spaces in which the mind can be free become more vital when our actual freedoms are under threat. Every act of creativity and self-care is a means of survival. Reaching out and organising is what we must do.
November 5, 2019 § 1 Comment
Photo credit Joel Chester Fildes
Do you know how to use the terms neurodiverse and neurodivergent?
What’s in a word? What are four letters between friends, you might well ask.
I myself am no fan of getting hot under the collar about language OR spelling. I’m dyslexic and I loathe being corrected. Way to feel like you’re back in primary school waiting to read to Miss, knowing that you’re destined to fail because your brain (unlike those of your mates) won’t let you.
So I proceed cautiously, but with a passion.
In my heart I know that words matter, though I honestly feel we can go too far. Again, I’ll take care, yet my impulse is to be strident because this is important.
My recent appointment to the A-N Board is an exciting development. An opportunity to help direct the biggest arts organisation for artists in the UK (and possibly even in Europe). I will do so neurodivergently.
I won’t help direct the Board neurodiversely because I am an individual and not a group. We are as a group (species; Homo sapiens) neurodiverse. Ergo, neurodiversity refers to a neuro-ecology. Pretty much think biodiversity, but with brains, and you’re there.
The neurodiversity paradigm is a term coined by Nick Walker, and I would recommend everyone who wants to understand it and the terminology to read his key text Neurodiversity: Some Basic Terms & Definitions. It is short and extremely clear.
Here’s one pithy example:
“Neurodiversity is not a trait that any individual possesses. Diversity is a trait possessed by a group, not an individual. When an individual diverges from the dominant societal standards of “normal” neurocognitive functioning, they don’t “have neurodiversity,” they’re neurodivergent.”
The neurodiversity paradigm is hitting the arts big time. Almost daily I’m astonished to read about opportunities for neurodiverse artists. The other day this was topped by reference to a self-diagnosed neurodiverse artist.
In the first case, technically speaking this reads as an open call like any other. In the second case, it reads like a double negative. Artist discovers they are part of a greater neurological-ecology like the rest of humanity.
I astonish myself by how much these understandable mistakes press my buttons, until I scroll back down the decades of dedicated research (and hard won experience) my current level of knowledge is founded on. This is not like my autistic ‘quirk’ about the status of the Tupperware cupboard (yes, I do have an unusual need for order in this department). It’s because the concepts my community have toiled over and honed for eons are sometimes being chucked about like newly plucked feathers.
I understand. When I was first corrected on this point, by Nick Walker himself, it took time to absorb the difference and get used to using the terms correctly rather than interchangeably, but I have done the work to get there because it matters to the paradigm shift we need to make. As Nick says, this is a social justice issue.
I’ve since developed my own understanding of the importance of working intentionally with neurological-ecology in mind. This I’ve termed ‘group-brain’.
To give an example, for my recent Arts Council England funded #NUNOproject I was enabled to lead, and my ‘shortcomings’ were compensated for by the project’s combined neurologies – ‘group brain’. Whenever I needed it, there was a rich pool of talent to draw on, a sea of helping hands, and extraordinary good will to support me in doing my best job. This was possible because we were working openly with an understanding of our neurological profiles across the project, and across neurologies too. No hierarchy, no judgements, and full consideration to optimal working conditions for ALL, regardless of neuro-type.
Unless as Nick Walker puts it, those closer to the “dominant societal standards of “normal” neurocognitive functioning” understand they too form part of our neurodiversity as a species, we neurodivergents will be forever othered and we all miss out.
So I urge you neurodiver-gently to consider the difference. Absorb the language and the process it represents of de-centring neuro-normative brains. I say to you gently, move over, it takes all kinds of brains to make a better world.
In my view, arts organisation need to embrace the depth of learning required to become agents of genuine change. Being smart about language is a good start.
October 9, 2019 § 1 Comment
The painting you see before you is literally buzzing. It’s a good representation of my brain right now.
I painted it with great emotion, inspired by a piece of classic Spanish cinema called The Spirit of the Beehive (1972). Bees swarming. Having a bee in your bonnet. It’s all connected. But what do you do when the bees are inside your brain?
Such is the sensation sometimes with autism (I find). I qualify this because it will feel differently to others. We don’t need a bunch of bee-brain theories (or pea-brain theories, to be honest).
That’s why it’s hard to write about the less comfortable aspects of autism – you don’t want to fuel the ‘bad autism’ beast. See! Naughty autism got you, they might say, but I won’t let them. It’s not the autism that’s naughty. I guess I should blame the sillies who tried to tell me I was slow (for example) when it’s quite obvious I am fast (too fast at times). But I won’t do that either.
Increasingly, I’m inclined to believe that these people and many others just don’t know about brains, probably because they’ve never had to think about them (or their brains in relation to others).
Thinking about our brains (and what’s ‘wrong’ with them) is probably the sole preserve of the ‘misfit’. Majority brains don’t have to bother. In my view this labour is advantageous and our ‘misfit’ brains hold many advantages too.
It helps to identify the volume of traffic caused by the bees (ideas), and they don’t always swarm so. They also connect parts that other brain can’t reach.
What interests me about the mark-making activity documented in the painting above is that it narrates the impulses of my mind via the movement of my arm (and hand). The movement of my whole body indeed (because it was suitably frenetic – you won’t know this but I just typed frantic in error.)
I have therefore (in a way I can relate to) shown you the inside of my mind, without recourse to any words. You will see it. You will see my joy and my rage. You will also see my freedom. You have even seen my autism as it is. Dynamic, rhythmic, capable of control (for I have stayed within the picture frame and given you a harmonious dancing surface to gaze at.)
I want to show you more.
December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.
I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.
Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.
Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.
The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.
A non sequiter I know.
The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.
So my boxing day was interesting. I spent the day in a blur playing catch up.
Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.
But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.
It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.
So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.
My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!
Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.
So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!
I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.
So my New Year resolution is very different this year. For 2019 I promise not to change a thing.
December 8, 2016 § 14 Comments
It’s been interesting lately. Autistic truths rain down on me and I make progress in my understanding of a fundamental difference – it’s the day-to-day truths that crystallise and move in.
I am at a concert alone because my husband is ill. My strategy to arrive just in time mainly works. I gain a seat at the back (I won’t see my daughter – competition for seats is a ruthless elbow grazer and not for me – but I am near the door). At the last moment I see someone I know, and we talk briefly before she finds a seat. This is okay.
Half familiar faces blur around me. I’m not sure whether to nod, but our eyes don’t meet – so I guess not. I glance at my phone, send a message, and feel the comforting spine of the book I prepared earlier. It takes a minute to notice that the noise is extraordinary. The acoustics in this elegant and lofty church are too good . The babble of voices casually cymbal – in every pew people are talking. For me this is waiting.
But the lighting is gentle and the air is warm, yet still I wrap my legs in a tight knot. How did I never register such tension before? It’s a classic me pose and my hips feel brittle and worn – as thought they might snap.
A man stands before us to make an announcement. He does not understand about voice projection. His underwater mumbling tickles my funny bone and I exchange amused glances with a young woman I realise I do know across the aisle. I’m now in deep peril. Uncontrollable laughter (silent shoulder shakes) could seize me, and so I gulp hard and look at my feet feeling lucky that the woman sitting next to me shows no social interest in me. This is all so random. I sit at the shore it seems.
I am relieved when the choir files in, knowing that I will cry and no longer feeling shame. I have tissues and am prepared – learning to savour this trait and understanding that my tears are a bodily reaction. What I experience is a simple response to stimuli by a hyper sensorially alert nervous system. A system so calibrated that I am highly attuned to danger and emotion – this is the core of my difference and why I can’t shrug off the ‘ordinary’. These are assets as a mother and an artist – I can enjoy my tears. I’m grateful at last.
These voices are exquisite – many on the cusp of womanhood pierce my heart.
I hang in knowing that this will probably take an hour, maybe more (but not by much I hope). More than enough time to get distracted, notice a child playing with her muffler (oh the boredom at that age!) and her mother steadily marking homework with a red biro. Admirable multi-tasking. Discreet too. The kind of hands whose writing could probably stay neat on the deck of the Titanic. Momentarily I envy her, my mind playing over the myriad circumstances under which I lose coordination and descend into scrawl. Indecipherable letters but mine own, now revealed as part of the greater whole.
The other day I imagined the difficulty managing information flow (of all kinds including sensory) and coordinating responses in autism as the want of a traffic cop at an intersection during rush hour.
But it’s always rush hour unless you make it stop. You make it stop by withdrawing to where you can control the flow.
It’s very simple.
But there’s more. I have not bargained for the ultimate neurotypical surprise. The interval! After 40 minutes things stop. What?
People it seems would prefer to have a break from the music they’ve come to hear to talk to one another some more, and drink from an assortment of hot and cold beverages of the type they can have at home! Good God! This is fantastically strange and eccentric.
It goes on. I am blessed. My daughter arrives knowing that I will be at sea, she thinks to come and give me a hug and takes time from the dressing room to swap notes on the hours we’ve spent apart. I tell of my astonishment – the ways of the socially needy! I whisper.
We smile and the room dissolves.
© Sonia Boué 2016
November 23, 2016 § 7 Comments
I’m trying to untangle a conversation. It was a brain ache.
Complex new ideas were being put forward and it all took place on Twitter, which probably didn’t help. I mainly watched and processed as two individuals talked about difference vs disability.
Others joined in expressing first confusion and later distress.
It is indeed distressing not to understand in the context of autism, where misunderstanding can feel like the default position.
How to trust your voice? How to be sure that the more fluid and practiced voices are spouting a version of reality which is true to you? Aspects of what they say might sound familiar – and possibly correct (it will likely be correct for them but what about for you?)
How to hook it up and see if it fits in the moment? Trying to follow such a conversation can feel like the knitting needles clack without you moving them and the garment being made is too tight and full of holes. The wool is scratchy and your nerves are frayed.
The person being challenged in this conversation was autistic, the one challenging identified as neurodivergent unspecified (ND). But clearly not autistic.
I had the sinking sensation that the autistic person was being probed uncomfortably.
No, this person had no ill intention I’m sure. In their eyes they were looking for the “truth” – which is often shorthand for; agree with me and see it my way.
Treating an autistic person like this is an example of not listening. And yet again the autistic person is denied validation and told that they are wrong. They are made to justify their position and told that it is wrong.
The non-autistic person doesn’t understand the position being taken – therefore the autistic person must be wrong because it is too difficult to take a step sideways and ask – how is it really in your world.
This person’s starting point was that they were ND too with the assumption it seemed that we should therefore all be singing from the same hymn sheet. (Personally this is my ongoing frustration with the new terminology we are all currently adopting).
And for a period my timeline was dominated by the ND unspecified person pressing the autistic person on their position. With the suggestion of ableism rising to the surface though quickly retracted.
My only contribution was to ask for respect and attentive listening but this remained unacknowledged.
I am deeply discomforted by this experience and ask is it any wonder that autistic people often fear to speak and that autism is associated with mutism in it’s various forms.
Such experiences confirm that the term ND doesn’t guarantee safe spaces and isn’t always a useful term.
I have also found trusted and willing ears on my many travels – but I wish it wasn’t this difficult in general terms. That autistic people could be encouraged (especially within the growing neurodivergent communities) to forge an identity and to self lead.
It’s not asking much and is actually a basic right.
No one wants the scratchy jumper that doesn’t fit.