Tight spot. Real talk. Access to Work.

White hispanic woman with short grey/brown hair, wearing an egg yolk yellow jumper and large black rimmed glasses, stands behind a small vintage brown suitcase. The suitcase has the letters F.C. H. embossed in gold. The suitcase is standing on it's side, resting on a white cupboard. The woman is wedged in a corner behind the cupboard with the suitcase pressed up against her face.

Yeah. This is a tight spot.

Hello, my name is Sonia Boué and I’m an artist. I also write about art and autism. Sometimes I write about professional matters, but I also write about being autistic. Often there is a crossover. Being a professional autistic artist is both easy (I have no shortage of creativity) and not so easy. Obstacles abound. I like to analyse the inequalities to counter them. We have a long way to go – largely due to historical ignorance about autism and other often overlapping neurodivergent ‘conditions.’ I’m conscious that in many ways I’m a privileged autistic person, so I chose to speak out.

Covid-19 brings a lot of clarity, ironically.

Growing into my autistic identity after a late-in-life diagnosis is an ongoing project. There are challenges, such as those as I write about in my previous blog post about emotional processing. The early months are the hardest, because generally there’s no support for the newly diagnosed. More than four years on it is mainly joyful being me.

Covid-19 arrived just as I began to embrace my identity as a disabled person too. Not all people in the autistic community do identify as disabled – so this wasn’t a given. For me it’s both freeing and matter of pride, bringing new conversations and fresh thinking.

Lockdown easing in the UK was a low point for me, but I’ve come through it feeling grateful for my family, and for wonderful friends and colleagues. If I were to die of Covid-19 I would want to have said thank you. You’ve empowered me with your interest, love and support.

I know this tight spot is like no other. The opportunity for factory reset is Covid-19’s silver lining. I did not like the old normal. Our eyes are opening to the structural bias’ embedded deeply within our societies and there’s a new hunger for change as witnessed by #MeToo, #BlackLivesMatter, and #WeShallNotBeRemoved.

I’m familiar with tight spots. Constricting and potentially disabling, they also bring opportunity. What matters is collaboration and support. This can be hard for autistic people as we can also need a great deal of time alone, and often find the emotional labour involved in maintaining relationships difficult to sustain. For some of us, a lifetime of ‘coping’ and ‘masking’ autism leads to extreme isolation. I’m convinced that although we excel at going solo (and need to for many tasks) we also benefit greatly from collaborative opportunity, if brokered in accessible ways. I’m curious about the mechanisms by which access to support is short-circuited, which I suspect are fulled by serial and ongoing negative responses to our interactions. Whole lifetimes of being misunderstood pile-in to the psyche. Why reach out when you know you’ll get your wrist slapped. Some of our so-called ‘characteristics will result from negative learning.

I’m interested also in the protective influence of love and acceptance, and the confidence self-knowledge brings. And what about the catharsis of being seen and heard? Sometimes it takes another person/persons to validate our experience for us. How many autistics miss out on this important encouragement?

Isn’t it true that we only know what we’ve been missing when we experience it for the first time? Well this week something like this happened to me. What I’m noticing under Covid-19 is that I’m having (what I call) real conversations. There’s a new honesty in many of my interactions – less small talk and social lying.

Part of this new honesty is a truer reflection of my disability. This week I’ve been supported to make an application for Access to Work. I’ve rarely felt more seen and heard. Ordinarily you might think it would be painful to detail all the areas in which you need help, but curiously this wasn’t the case in this instance. I put that down to the quality of support I received and the incredibly generous and thoughtful ways in which this process was made easier for me. I can’t really stress enough how good it was to hear the words, ‘I do hope you get this’, from my helper.

Invisible disability is difficult to broker. Allies who get this are worth their weight in gold. I want to thank Arts Council England, Disability Arts Online, and DASH for getting me to the point of an Access to Work application. Due to my disabilities I couldn’t have accessed this alone. It takes a lot for me to own that my need is real. If granted, Access to Work could revolutionise my practice. Our sector needs to understand the myriad ways in which this is not a level playing field.

Autistic emotional processing in a pandemic and the importance of guilt-free decompression.

White Hispanic woman in light checked pyjama top and cropped hair is viewed sideways on. She wears black rimmed glasses, and a gold stud earring. She is sucking on a rubber pacifier.

These days I’m often wordless. In their place I’m making a torrent of images, mainly shared on Instagram.

I’m an artist and creating visual responses is one way of processing my emotions. If entering lockdown in the UK felt like limbo, this at least had certainty and felt relatively safe. Easing lockdown in the UK is a hellish limbo of another kind, the sort that can seriously mess with your mind.

Like many other autistic people I have to work harder to process emotions than the average, so feelings sometimes arrive suddenly (explosively even), unwelcome and unannounced.  This can begin with low level yet visceral physical unease which fails to register in my mind. There’s often a stealthy build-up of tension, I find. Also, vague feelings of malaise are all too familiar, so I tend to just bat them away as a matter of course. I can spend entire days playing tennis with creeping anxiety. I’ve got a great forehand and a smashing backhand too. I can even lob while typing – something I’m doing right now, actually.

I’m a cheerful autistic person up front, with an Eeyore undercarriage. Most of the time I’m up, though I am prone to sudden melancholy. I’ve learned that if this is not tiredness or hunger, there’s usually a third reason to analyse and thoroughly get to the bottom of before I can regain my usual cheer. With Covid-19 this has got a whole lot harder, and though I know it’s not just me, I’ve struggled to identify my extreme anxiety over lockdown easing. I now see it’s been a double whammy.  Major change (well known autistic kryptonite) combined with confirmation of the terrifying chasm where responsible, ethical government should be. Simply put, we are not safe, we are not safe.

Getting to grips with this when your mind and body are playing nicely together must be difficult enough. Raw unprocessed anxiety can be immobilising. Grey exhaustion, aching bones, crawling skin, and a tight band around my head, seemed to overwhelm me quite inexplicably last weekend. I call this emotional flu’. Although I struggled to believe I was coming adrift, there was nothing for it but to ‘cave’. No more lobbing the ball, Covid-19 is not Wimbledon.

Because autistics often live with chronic anxiety anyway, and emotional processing takes time – owning that we’re not okay can be a much slower process. In the build-up to meltdown, for example, I’m prone to grumpiness and largely focused on keeping afloat. It’s a sure sign that overwhelm is on the up. Being a bit ‘out-of-sorts’ can quickly progress. Suddenly I’ve blown a gasket, seemingly for no reason, but behind the scenes extreme physical discomfort – emotional overload plus sensory stress – has peaked.

I start to register that I’m not okay when emotional flu’ sets in, when days pass and body and mind still won’t play ball. The only remedy is solitude and physical therapy – for me this is probably quite foetal and has to involve prolonged immersions in water. Slowing everything down allows me to catch up.

I think too that it’s harder to own to not coping (however temporarily) when you’re basically lucky. I live in a nice bubble and can shield. Rationally I tell myself I’m pretty okay (and I am). It’s important however to absorb the myriad emotional impacts of Covid-19 on all of us. I’m better off when I can say that I’m both enraged and terrified by our government. The virus in itself is frightening but we know that with the right management it can be contained. Right now this is what really hurts.

I hope that in understanding myself, and in sharing this brief account, I can help other autistics, family and friends. Reaching a resolution of feelings really helps. Giving your autistic loved one guilt-free time and permission to decompress is the best thing you can do.

 

 

 

 

 

213 Things About Me Episode 1: You what? A Review.

213-Things-About-Me-Podcast-logo

Trigger warning – suicide mentions.

I know a a lot about posthumous collaboration. As an artist I work in multiple forms to respond to my father’s life story and his plays. I’ve even written a play about a playwright with my father’s name, and adopted his voice to narrate my take on his story. In many ways I view Richard Butchins’ 213 Things About Me as a kindred project. At an artist’s talk last year, I was caught by surprise when asked what my father would think about my work. This question has stayed with me and makes me wonder what the real Rose would make of these podcasts. It takes a profound level of trust in a relationship for work quite so intimate. The first episode of the series is called, You What? 

This is a helpful perspective if you’re concerned about an autistic man curating an autistic woman’s voice. Also, this “true story” isn’t just told from one woman’s perspective. 213 Things About Me began as a conversation between friends. You What? continues in this vein. I’m intrigued to know how this aspect of the story will play out in subsequent episodes.

Richard’s voice expertly weaves though what is a beautifully constructed narrative to help tell Rose’s story, and to add his own experiences and opinions. I’m glad he owns this. Actor Rosa Hoskins is superb as Rose. Patrick Knill is the voice of Wikipedia. These are voices to disarm the most wary of “regular folk”, which is Richard’s term for people whose neurology doesn’t vary from the supposed ‘norm.’ ‘Regular folk” are perhaps the prime audience for these podcasts, though “irregular folk” may enjoy them too.  We may not see ourselves reflected in Rose and Richard, but autism is as varied as “regular folk” are, and that’s okay as long as listeners listen carefully. Rosa finds comfort in maths, I still have residual school maths trauma. There are many ways to be human, as Richard says.

You What? includes beginners notes to complex questions, such as what neurodiverse means (I’ll get back that). The soundtrack is just shy of upbeat.  Everything signals that we’re in good hands. We’re about to go inside autism, and most listeners will feel reassured with Richard as their guide. 

“Welcome to the world of ‘Rose’, where social distancing is a daily reality. After her diagnosis for Asperger’s Syndrome, Richard suggested she write a list of her positive qualities, which she called 213 Things About Me.” 

It’s a smart move to publish these podcasts at a time of social distancing. For once autistics are watching “regular folks” cope, and we have wisdom to share if they’ll listen. So I hope these podcasts will prove popular beyond our community. Richard was granted access to Rose’s computer files, allowing for so much more than just an engaging list of attributes. It’s the longer passages of Rose’s thoughts I enjoy most. Forensically dissecting the art of lying, she concludes the intellectual effort isn’t worth it. I longed for more room for her voice, but there was a mountain of contextual information to pack into episode 1. The background to this story (to understanding autism) is complex, and I guess that’s the point. There wasn’t enough Rose. Her life was cut short by events we will perhaps learn about in future episodes.  

So this story comes with a major trigger warning. Rose is a fictional name for a woman who tragically committed suicide six months after her Asperger Syndrome diagnosis at the age of just 36. This is but one reason I might hesitate to listen. Autistic adults who do not have a learning disability are 9 times more likely to die from suicide (Autistica UK) than “regular folks”. Richard tells us that Rose was special in an exclusive way because she was damaged by the world around her. I think this series of podcasts will do much to inform about the intolerable pressures on autistic people to conform to neurological bias’. We’re seriously harmed by the “regular folks” demand that we be like “regular folk” too. We simply can’t be, so we disguise ourselves to survive and such erasure can be devastating. 

I’m not damaged by life, but I do have inbuilt defences. Autism narratives can cause discomfort even when the author is autistic. Internalised ableism and adoption of unhelpful tropes can be intensely triggering. The simple fact of ones own autism not being reflected can be painful, this is not narcissism it’s a pile-on into our historic erasure. I have to be sure I have the mental capacity to invest. A project like this also throws up comparisons. Will this be another The Reasons I Jump, or Rosie Project? I get easily bored. I have a short attention span. I am suspicious of new things. I could get hung up on the use of a robot in the publicity pic, (I wouldn’t use it) but I respect the quality of Richard’s work and Disability Arts Online’s content. You have to trust both the source and the voice, and I do.

213 Things About Me is unique, though it contains echoes of other autism narratives and touches on some common tropes. You’ll learn as much about Richard’s views as you will about Rose. “When people ask for your opinion don’t give it.” Is great advice for people like me who fall for this “regular folk” trick every time. I’ll try to remember, Richard. Cheers! 

If I wanted to quibble (and I often do) I would argue with Richard’s use of the term ‘high functioning’ in this episode. He also misuses the term neurodiverse, but so does virtually everybody else. I’m glad he does because it lets me off the hook. I’m officially quitting my queen Cnut perch on the important difference between neurodiverse and neurodivergent. If even Judy Singer, the originator of these terms caves to this inevitability, then so be it. Like Rose, Sonia likes precision but she isn’t going to get it. 

Do give episode 1 a listen, and let me know what you think.   

Conceptual loo rolls.

 

Woman with buzz cut and black rimmed glasses seen from the side. She is wearing a long cardboard tube on her nose. It is held on by black elastic.

Stay alert! Do your civic duty! Don’t move on.

Writing under lockdown can feel like trying to thread a broken needle. Adjusting to Covid-19 is a full-time job. This week’s been especially tough. A nation raw with grief confronted by a government intent on rubbing salt into the wound. Somehow, I’ve taken to making proboscises (the nose of a mammal, usually long and mobile) out of cardboard tubes. It looks simple (and it is certainly makeshift) but it’s complex conceptually – I promise.

I sometimes write here about autism and the art sector. Cut adrift from my usual groove I’ve made new contacts and gained a different perspective. How will I write about neuro-inclusion in future? What will the arts be like if/when we emerge safely from lockdown? What will my priorities be? With so much yet unknown, I’m thrown back on myself. Unpeeled is the life before, and once unpeeled it loses some of its stickiness. What was I so adhered to?

I’ve even had a ‘lockdown birthday’ (I love how you can add this word to anything), and I’m coming to terms with ageing. I’ve been feeling absurdly young, I realise. A late diagnosis of autism is probably the cause. I’m a child in woman’s body, not developmentally speaking (I wouldn’t use such language) but rather in the sense that I’ve needed to make a fresh start in life in my 50s. Curiously, lockdown has allowed me to feel my age, and rekindled my love for the window on life autism brings. This pause has been good for me. Life on the outside (I now realise) has been ultimately eroding. 

There’s a paradox to navigate. I feel terror. We are living and dying under Tory misrule in the time of Covid-19. I feel released. I’ve found time and space to play – finally. 

Autism (for me) gifts a certain sensitivity, and the ability to focus on subjects of interest. Conversely, it is difficult to focus on anything which doesn’t connect in some way to one of my passion projects. This probably makes me good at not ‘moving on’. It’s a useful quality in present circumstances. 

My loo roll proboscis marks a moment. Through persistent visual research I’ve arrived at the perfect expression of all the intersecting strands of my practice (past and present). I can’t deconstruct this here, it’s all far too fresh and densely packed. I hope that one day soon I will. 

All I can say right now is that (quite perversely), the present uncertainty has enabled me to refine and crystallise aspects of my practice. Am I seeing more clearly because I have more time? 

The value of creative resistance in such a moment is incalculable. With my cardboard noses I will stay alert, do my civic duty, and not move on. 

 

 

 

 

I wear my beret because this is a long story, as old as time.

UK readers will know the context for this micro-blog, which first appeared on Instagram @s_boue

It has taken a disaster to teach me how to wear a beret like my grandfather. It sits on top of my shaven head and feels suddenly right, after 4 years of thinking it was too small. A child’s beret! I thought. That was before we crossed a red line and I shaved my head too close, all on the same day. My grandfather lived to be 94, and sat in his armchair tutting and muttering, I shit in the salty sea! It’s a Spanish phrase. Bah, bah, bah…he would say to himself, and then smile at me. Sonia Begonia, he called me. I didn’t know what he’d lived through or what he’d seen. Sonia is the only one who understands the thing! He said often. Yes, my mother would say, but what thing? He never told us. Sometimes I think about it. I was a wilful and ‘naughty’ child. They called me the earthquake. Was it this? My wilfulness? I’ll never know. What I do know is that he’s with me in these strange days, guiding me with his mistrust of those who treat the people, el pueblo, like fools. Bah,bah, bah! I shit in the salty sea! I wear my beret because this is a long story, as old as time. 

A brief blog about a culture shift in accessibility under #COVID-19 #disability

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Updated and retitled, this blog has been republished with a new image

So we’re in COVID-19 lockdown.

Many neurodivergent and disabled people are watching, the abled neuro-majority, with fascination.

We are witnessing a moment that is spectacular and beyond our wildest imaginings. The tragedy is that it’s taken a lethal pandemic to create the culture shift we need. Accessible work norms are being adopted on a global scale, when many of us have struggled to gain basic access accommodations so much closer to home. That this is so brings a sense of awe, the scale of which (like the pandemic itself) is almost impossible to grasp. For once, we really are all in this together. Many will want to say, welcome to lockdown! Welcome to our world.

This is the moment to say that not all neurodivergents or disabled people are the same, and that some of us are extrovert, highly mobile, and need frequent ‘real time’ social contact.  We do, however, all face barriers to participation in our daily lives (including stigma).

In this moment the variously identifying stay-at-home veterans are looking at you. As you join us in your vast number, we gasp. As you struggle to adjust to lockdown, we can only gawp in wonder. You’ll finally know what it is to live with restricted mobility, but will you even consider us? What will you learn? And when the nightmare is over, will you still remember?

In the UK Spring has sprung. I sit writing this piece by my widow. My neighbour’s cherry tree is almost in blossom and the sky is picture-perfect blue. I noticed yesterday that the birds are returning. No aeroplane trails cut through this pristine sky. It’s as virgin as untrod snow. Our planet heaves an audible sigh of relief, and on one level so do the normally-stranded.  My usual status is more out-and-about than some, but staying at home is the best way I can avoid the significant impact of sensory stress.

Yesterday I visited an adult autistics’ social support group via Zoom for the first time. It was magnificent. What pleased me beyond the ease of this technology were the clear rules of engagement. Our facilitator also directed the flow of conversation like a skilled traffic cop (in a good way.) Not that the traffic was heavy, and all of the drivers followed the rules. No jams and no confusion. Text chat options enabled multi-modal yet simultaneous group dialogue to take place, and one of us chose to participate with sound only. The advantages quickly become obvious. Avoiding the sensory assault of travel, and access to a greater number of communication options make meetings not only do-able, but also without negative impact. This is revolutionary. This is the layer the abled neuro-majority need to know about and understand.

At the close we talked briefly about this moment, and I feel it must be spoken about more widely and acknowledged. As the abled neuro-majority scramble to adjust, I admit to a feeling of calm in this respect, though I fear the virus greatly.

As I process all the implications I wobble, but I don’t fall down. For now, I’m distracting from the horror of COVID-19 by gazing at our new world order and wondering how this access story will play out.

You can find my tips for online networking in my previous blog post.  You can also find out about my art practice here.   I’m @s_boue on Instagram and @SoniaBoue on Twitter.

NB. I’ve chosen to republish this blog post. I can no longer distract from this pandemic by thinking about access issues, but nonetheless the moment it captures is important. I hope we can all learn the lessons COVID-19 brings.

My artist freelancer’s guide to online networking. #COVID19

Woman with short dark hair wearing collaged tomato glasses and yellow rubber gloves grips a camera.
New Tools for Life © Sonia Boué 2020

My top tips for surviving and thriving online.

We’re all at sea with this coronavirus pandemic, and for freelancers in the UK it’s also been a body blow to learn that  (the the time of writing this) our Government has failed to support our incomes in line with employees. With so much creative industry work cancelled (for the foreseeable future) we’re entitled to feel hung-out-to-dry.

We know that world health matters most, but meanwhile we need to make a living, and find ways to “stay calm and carry on” from home.

It’s wonderful to see so many rapid responses to this crisis. A-N have created guidance and information for artists, Disability Arts Online have responded by creating new commissions, and Mathew Burrows recently launched the Artist Support Pledge. It’s all good. We will refashion our working lives.

But in all the uncertainty, there’s one blinding truth. Abled freelance creatives who’ve taken mobility for granted can no longer do so. We don’t know for how long, or in what ways the coronavirus will impact our future working norms. With self-isolation our new reality, and lockdown round the corner, we will all experience the same level of dependancy on the online world for communication.

So I want to say, welcome! This is where we (the variously-identifying stay-at-home freelance veterans) hang out and do our business. We know that you’ve enjoyed these spaces too, and found them a useful support to life and work. But this is a whole new level of habitation.

You’ll quickly connect to this next level but it can be overwhelming. I’ve spent 10 years building a career online, and this is what I’ve learnt about how to avoid the pitfalls and thrive.

  1. Ignore social hierarchies that shame online interaction. It’s not shameful to be seen to be a regular online user.
  2. We can break through social isolation by daily sharing. Regular sharing builds networks.
  3. Sharing and responding is important. You don’t have to respond to everything. Promote the voices you believe in without expectation. It’s not a given that they will like or share your content in return.
  4. Sharing quality content is key. This includes process and context for your work, as well as finished works. Visual artists especially, the quality of your images is important.
  5. Sharing is also the work. Online is also the work. You’re constantly building.
  6. The pace of online connection is different. It can feel and be instant at times, but deeper connections take more time and patience.
  7. Share for you, not for likes. You’ll find your own level. It has to feel good and useful to be right for you.
  8. Don’t worry if no one engages with a post. This isn’t failure. There’s an avalanche of information to process online. It’s not personal.
  9. Only tag contacts into posts if it’s likely to be useful/relevant/interesting to them. Repeatedly tagging contacts can be off-putting.
  10. Boundaries can get blurred. Remember online sharing is publishing and subject to publishing law.
  11. ‘Oversharing’ can be a hazard of spending more time online. This is what the Direct Message (DM) function was made for.
  12. People respond more to positive messages. It’s okay to share negatives, but a consistently negative message can be off-putting.
  13. Be true to the core of your creative practice online. Don’t try to be all things to all people, but do link what you do to others, and to what’s topical, when relevant.
  14. Using hashtags is an important networking tool. Researching relevant hashtags is time well spent.
  15. In 2020, filtering, muting and blocking options have become an essential part of the online freelance toolkit. It is your right to inhabit and work in a positive and  conducive environment. This is now also useful information for safeguarding your mental health online regarding coronavirus anxiety. You don’t need to stay away, you can filter trigger words on some platforms.
  16. Online platforms can be overwhelming. It can take time to find out what works for you. Follow the people and organisations that interest you, but with multiple contacts it’s wise to use filters. Enabling notifications for key contacts is also a great tool for keeping in touch.
  17. A watched kettle never boils. Follower numbers are the same. Network for the joys and benefits of connection and your numbers will grow themselves.
  18. Adopt what works for you, you don’t have to do it all.

 

www.soniaboue.co.uk

Instagram @s_boue

Twitter @SoniaBoue

 

Disability Arts: Slaughtering the Sacred Cows : my provocation for a public conference.

 

In this blog I share my provocation for the Public Conference – Disability Arts: Slaughtering the Sacred Cows at the Midland’s Art Centre in Birmingham. Anna Berry is an artist and the curator of the exhibition Art and Social Change: The Disability Arts Movement at the Midlands Art Centre. For her DASH Arts Curatorial Residency, Anna curated this event as a public conversation. 

Anna asked panelists to bring a sacred cow of disability arts to the conference for slaughter! As she explained in an email,

‘The idea of the day is to try to create a space where people feel they can think and express their thoughts freely, and be accepting of a multiplicity of opinions, even if it’s not toeing-the-party line when it comes to disability politics.”

My approach was to unpick solidarity to share frustrations about the lack of diversity within disability arts. The conference was super-interesting and my reflection about it will be published shortly on Disability Arts Online.

 

Version 3

 

“I want to begin by saying that I don’t necessarily agree with my own argument (I’ll leave that up to you to work out), and that I’m treating this as being like the debating societies I was excluded from due to failing the 11+  spectacularly – because of dyslexia, dyscalculia, and being selective mute at the time without knowing it. So, this is my opportunity to be an obnoxious smarty pants! That’s the persona I’m going to adopt. 

My argument pokes a stick at Anna’s question… 

Where do mental health issues and neurodiversity sit within disability arts?  Although, I will focus more on neurodivergence stick to what you know, I always say.

I also want to ask: can we laugh at ourselves without fear of offending one another? And why does this all feel so uncomfortable? I’ll leave that out there. 

As a late-diagnosed autistic person I’m a newcomer to disability arts and think of neurodivergents as the next frontier marginals. 

So, like the youngest child of the disability arts family I’m going to misbehave royally and go for the jugular! 

My sacred cow is solidarity – that fluffy idea that we’re better together. Well, some autistics might disagree – just putting it out there! 

(This was meant to be a joke!)  

I feel solidarity contains the illusion that disabled people can all work together; that we can consider one another’s disabilities sufficiently to be good comrades in the joint struggle against our oppression. But are we? And can we? 

The definition of solidarity is “unity or agreement of feeling or action, especially among individuals with a common interest; mutual support within a group.”

Even I’ve got to admit it sounds good. So what’s the problem with it? 

Well, I want to put it to you that the notion of solidarity for such a diverse, and increasingly diverse diverse group of people is terminally woolly, and, that in 2020, it’s quite possibly not unlike trying to herd cats. How can we contain all the cats that are likely to go off message? I’m thinking particularly of some of my neurodivergent friends and colleagues who don’t even want to identify as disabled! 

I think that solidarity probably depends on a shared history and understanding, which makes it difficult to include newcomers, let alone cater for all groups and perspectives that could come under the umbrella of disability arts. 

So I argue that, however far it may have got disabled artists in the past, our solidarity today is a perhaps a mere fantasy. I argue that indeed our so-called solidarity is, in reality, a hot mess of bickering and jostling in which the specificity of need is lost and no group en masse actually has their needs met. Perhaps because the abled are just not literate in nuance and we’re too busy perpetuating our own misery by arguing. 

(At this point I noted that there were no communication badges or flapplause.)

I wonder if we’re doing both ourselves and the abled a disservice in not talking-up and educating about the wonderful diversity within our solidarity, and also if we’re not just a bit crap at meeting each other’s needs too? Shouldn’t we just admit this? 

In herding together, are we also unwittingly sustaining our marginal, outsider status? You can’t have insiders without outsiders. But, can I only be naughty and ask this because my disabilities are invisible and I’m congenitally tactless. (I think my disability and my privilege just got tangled up there.)

Shouldn’t our end goal be to destroy this outdated and delusional idea of solidarity, because it shouldn’t be and won’t be needed anymore when we’ve swallowed up the mainstream with multiple ninja infiltrations of the system. 

As I’m not really sure whether my argument has legs or even wings, I’d like to end abruptly with the assertion that solidarity is so yesterday, and throw it open to the floor with one last petulant, youngest-child-thinks-they-know-best, retort.

Aren’t we all just better off blowing our own trumpets and talking about the brilliance of our art?” 

I have a neurological condition: further notes on an autistic identity.

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A blog post about exploring new language through visual research. 

I’ve written a lot about my autism over the past 4 years, but that’s because discovering you’re autistic late in life can feel like a page-turner. With an introspective disposition and a bent for self-analysis the plot twists keep on coming. I’m glad of this. Who doesn’t love a good story and, let’s face it, there’s nothing more gripping than your own. I don’t minimise the inner struggle for autistic self-knowledge, but dull it isn’t!

Discovering autism can quickly become an identity quest. For a late-diagnosed person the self-image of a lifetime can suddenly feel like a case of mistaken identity – there really are no words to capture the magnitude of this. There follows a process of adaptation for which there is no guidance and little if any formal support.  We must work things out as best we can, and for many of us this can mean a lot of online activity, including reading and writing blogs. Wherein autistic adults are amassing a truly wondrous resource, which also serves to document both an important cultural moment and a movement for social justice. Good times.

Access to a collective autistic wisdom, absent for a lifetime, is a powerful force. Through it we can discover the language and concepts we need to ease our passage towards more congruent identities, but there are no emotional short cuts. Truly understanding and owning autism is something which evolves, I’ve found. Where I was last week is not where I find myself today. In a recent blog post I considered ‘social disability’ as a useful term.  Right now my eureka! is a post-it note on which a version of me seems to have written, I have a neurological condition. The me who wrote it must have been the schoolgirl me trying hard to please at handwriting practice. The note pictured above was written (left-handed) by the artist-advocate me who wants you to know that my neurological condition affects my handwriting. This blog flows directly from my visual research.

My post-it phrase also featured in the blog post about ‘social disability’, but sometimes we bury the lede. I must have written my post-it as an aide memoire. It was waiting for me yesterday on my return from a 12 hour working day (including travel), and today I’ve struggled. This is not ordinary tiredness, this is the ache of overload which I now understand to be neurological at core. So much so that I realise my post-it contains the message I must now front-load, not least to myself.

And with these words I am reminded of all the binaries we seem to peddle in our online lives, in which my lovely post-it could be seen as a pathologising message about autism. This is not my intention, and autism as a cultural identity is something I will also uphold to my final breath – I see no conflict in this duality. I continue to be joyful, and to celebrate my autism unreservedly, but I must develop the means to communicate more effectively about my autistic needs. What’s required is clarity of thought and vision. We can’t truly know what we need until we learn what’s holding us back. It’s all a work in progress.

I’ve worked with many artists and I know how challenging it can be to seek to make autism visible when the narratives surrounding autism remain skewed and contested, but I believe it to be important and fertile ground. For example, I intend to talk and practice more self-care as a result of working on the image above. The act of creating it conjured the idea that one simple thing could have improved my yesterday and can help me in the future. My yellow post-it! I’m now excited to discover what happens when I carry it with me – both literally and metaphorically speaking.

I’m loving this phase of my becoming. My post-it isn’t designed for sympathy, no, no! For me this is a powerful image, brimming with ownership. I’m all for that!

 

 

Art, fog, and beautiful brains: thinking about autism and culture shift in the arts.

Two very red tomatoes painted on a rose/white background
You can’t tell me how to paint tomatoes #WIP

 

I’m a late-diagnosed autistic. The more I learn about myself the more I recognise  unwitting social ableism. As a cohort of emancipated autistics at loose in the world we can can be vehicles for change. We need both inner metal and moments of respite because it’s not easy (and it’s not for everyone). We can only work to capacity, and move forward without judgement, because this is painful work.

In my travels I often encounter casually displayed social prejudice embedded in seemingly benign comments, which are rarely maliciously intended. In most cases it would feel wrong to interrupt and say…excuse me, what did you just say?! These are not yet the social rules.

So it would be awkward and seem rude, and yet – there it is! A social ableism which not only hurts and offends your ears but  holds back the kind of  culture shift we desperately need – not only for equality, but to save lives.

Autistic people die by suicide  because they can’t perform as non-autistics. Autistic people also die in social care.

There is urgent cultural work to be done. Yet, faced with such a moment I often fall into a familiar mental fog.

Where to begin?

This is the question autistic people report facing with many even ordinary every day tasks. I’m finding it useful to think about this as a form of ‘brain fog’ which affects my ability to join up facts, marshal arguments or take action in a conventional expected/demanded linear fashion. Invisible barriers descend and conspire against us – and sometimes we haven’t even left the house.

People often use the term ‘procrastination’ to describe such delay in coordinating action or response, but I find this inaccurate and pejorative. It’s not as though we have a will in the matter.

So I want to talk about brain fog as a neurological condition and use fog as a metaphor to think about my disability and my art practice. Logically, I feel, the way my brain works will show itself in my creative method – an obvious point but one rarely analysed in mainstream arts.

It couldn’t be clearer. Procrastination suggests there’s an alternative involving non-procrastination. Namely that I could speed up if I just moved directly into tackling the ‘task at hand’.

But no.

I challenge anyone to move swiftly and directly in a dense fog. No. The sensible thing is to adjust your ETA, slow your speed and find a fog lamp.  You literally have to inch your way.

Brain fog (I find) can be made up of two categories:

  1. Too much stuff – options, information, thoughts, hostile demands (which go against brain type)
  2. To little stuff –  lack of relevant information, coded information,  not enough working memory, dissociation, loss of focus.

It’s a hugely complex picture as our fog-prone brains are also our best friends. Brain fog seems to be a feature of an expansive and holistic thinking style, and I want to add that it’s not a permanent state which finds a wonderful counterbalance in hyper-focus. We can be incredibly focused when conditions allow.

Also a fog prone environment is a treasure trove of intuition, capable to a fault. This line of thought helps me to understand the kind of learner I am – I have to experience something to learn about it and feel my way.

It also helps explain the methodology of my painting practice, which flows not only from brain-type but also from the origins of my painting practice in an experiential painting group during my art therapy training.

My most recent (obsessive) tomato paintings couldn’t illustrate this fact more perfectly. My method has been to coax my painted tomatoes (signifiant symbols of a very specific childhood memory and location) onto a series of canvases through a process of trial and error. As though themselves emerging from a fog, they’ve come in and out of focus, been marked in and erased countless times along the way. A vital part of this process has been checking my work against the harsh studio lights. If the tomatoes weren’t ‘ripe’/right I pushed them firmly back into the fog. Painting in oils has felt almost like sculpting in clay.  Importantly I’ve revelled in sharing my process on Instagram – knowing now that what I’ve really wanted to say is look at my brain! This is how it works…

What’s vital to my process is the to-ing and fro-ing – the freedom I give myself to experiment without judgement and begin again if I’m not happy with the results. It’s so not a linear process. What counts is the visible and concrete nature of this exploration – this is my kind of research.

What I hope to do in my practice is begin to show more of my process so that I can carry on exploring these connections more publicly. Working with a fog-prone brain is truly wonderful (I wish you could try it if you don’t have one!) until I’m forced to complete a linear task in a linear fashion, or I’m not able to access missing data. Feeling my way as a method is vital to my ability to function, stay well, and at times excel. What many of us need is support to make our way in a world not yet fit for purpose, and which forces us to work against ourselves.

And so we return to the start of this blog post and the desire for culture shift, and the needs for resilience in the face of social ableism.

I’ve written previously about reviewing where I am  4 years on from an autism diagnosis – I will be 4 on the 4th of March 2020 autistically speaking. I want to use my practice to talk about accommodating brains that are ‘other’. Our multifaceted, beautiful neurodivergent brains, with which we can be the useful ‘aliens in the room’ (a recent phrase I’ve heard used to talk about innovation).

It’s important to feel useful to stay alive. It’s what I want for us all. We must all feel that we have agency over the things which matter to us. In my studio I know that my tomatoes will dance, sing, and play with me, until they’re ripe and ready to emerge as talismans for a way of being that can’t be silenced – it is too joyful and beautiful.

Okay, I know I can’t effect culture shift with my tomatoes! Though I can add to the growing conversation in the arts sector.  I’ve recently been inspired by a colleague about to think about the power of silence as a defence against social ableism.

I’ll be holding the possibility of using silence in any future encounters with unintended social ableism. Let’s see what opens up in the gap.

You can see more tomato action on @s_boue

 

 

 

 

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