Angel Hair and New Year Resolutions

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.

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Alternative Networking

December 23, 2018 § Leave a comment

Image created by NYFA from an original photograph by Philip King

I love it when nice offers come into my inbox through my artist website.

So I was delighted when New York Foundation for the Arts (NYFA) recently invited me to take part in a Twitter Q&A on ‘Alternative Networking’.

Since my autism diagnosis in 2016, I created WEBworks, a peer support and mentoring group for autistic and neurodivergent creatives, and have written about networking and social disability. I’ve been able to gain Arts Council England funding for my work and am leading an ambitious inclusive project called, Neither Use Nor Ornament (NUNO), to be delivered in Spring 2019.

It was this work which brought NYFA to my door.

It’s been a joyful and collaborative experience to work with NYFA’s Mirielle Clifford and Amy Aronoff, who produced the Q&A and worked with me to accommodate my needs. So much so that a blog was created as a permanent post, so that those (like me) who find processing fast moving conversations a challenge can read the Q&A at leisure.

I’m immensely grateful for the welcome given to neurodivergence at NYFA on this occasion. To reach out to an artist like me, to really listen and go the extra mile by incorporating their learning from me into the fabric of the Q&A feels like a dream. It has been a marvellous end to a truly remarkable year for me.

So if you would like to read the full the full Q&A you can!

Exuberantly autistic!

December 16, 2018 § 2 Comments



 Sliding back in time

I’m writing under rather constrained circumstances – which is ironic. I spent the past 24 hours absorbing exactly how free I am inside. But I am now on a packed commuter train heading home, hugging my newfound insight. 

Visiting my mother, who’s been feeling quite under the weather since her recent stay in hospital, has been a curious joy. We conspired over dinner last night – chocolate mochi are not really a recommended desert for someone in her condition but, being both new to her and deliciously moorish, they lent an air of celebration. For a moment I wished I’d bought beer. Such exuberance felt precious. A gift. 

I want to talk about mapping and memory 

Whenever I visit my family home I have to conduct a close scrutiny of my surroundings. I can’t help myself. It is a compulsion I’ve come to understand as my way of working (I work with family memory after all), but it’s as important to me as breathing. It’s also how I process the world – I’m looking for traces, filling the gaps. 

When you have severe challenge in the area of working memory it is easy to lose your way in life. It’s even easy to lose your way to the fridge! People like me need a trail of breadcrumbs – material memory is one term I’ve heard used a great deal to express the importance of objects, and I think of them as resonant ‘beings’. Objects contain memory – photographs do this especially well as we know, and I love photographs beyond words. 

This post will be about some extraordinary pictures and a new way of thinking about myself. 

I imagine (but can’t know) that as a blind person might navigate through touch, I often say that I feel my way through life and I do – both literally and metaphorically. I have to circle, and scan cupboards, shelves and bookcases. I must open drawers and lift papers, open boxes and hold cups, jug and curios. Not surprising then that mine is also the joy of the thrift store and flea market – though this is a more distant pleasure. 

Some family items become incorporated into my object work (with my mother’s permission of course). This has become a collaboration of sorts. Look! Oh look! we say. She’s grown to understand my ways. My need for these objects is visceral. 

The following morning the bookcase in my mother’s study yielded a curious collection of slides from the Louvre – mainly of Impressionist paintings. Dad must have been very taken. You could get a good money for them on Etsy these days. That’s by the by – it’s just that I spend a lot of time trawling and I know the market. What they offer in that moment is a breadcrumb, an aide memoire – associative thinking is what I rely on.

Several days ago an artist I know called out for a freestanding pull-down projector screen. I have one but didn’t offer – it was out of range, and had spent the past 40 years under my mother’s sofa. Sitting next to it a Braun slide projector of the same vintage. How I came to have these objects is a story of parental hope. After a long struggle with school I had managed to get to university to read Art History – mum and dad must have been overjoyed. Buying me a projector was their loving endorsement of what they imagined was my new found career.  But I, wayward as ever, ditched Art History at the first opportunity! So there it had remained. 

A drawing of the kind of screen the artist was looking for had triggered a memory. I vowed to try out the projector on my next visit home, but had forgotten this entirely until I found my father’s slides from the Louvre. Gracias, papa! 

I ran to the sofa, and the boxes containing both screen and projector were there, dusty yet full of their original promise. Two further moments of dramatic tension ensued. Would the projector work after all this time (yes beautifully!) and would I be able to fix the screen which had unfurled in a fury and come adrift from it’s moorings with an unhealthy twang at first opening! Eventually, yes – but not without bloodshed. Imagine teasing a stubborn and sticky connecting tape from the innards of a hefty metal roller-blind mechanism with forefinger and thumb. They don’t make them like this anymore.

So it was quite a process to resurrect the screen, but the Braun projector emerged as an intuitive machine – using this old technology (to view dad’s early family photos) enhanced the experience. So many layers to ‘old tech’ assisted recall, so many ways in which this viewing signalled a sense of embodied return. You press a button to activate a lever which physically moves the slides one by one – I tried to explain to mum about powerpoint but it didn’t translate. She’s 91 and has never sent an email.

An unexpected adjunct to my recent forays into the land of self-discovery! The camera lens requires a certain stillness in its subjects but I, as a child, appear to have been in almost constant motion! When I am required to be still my body twists, my hands shoot to my mouth, balance seems precarious; but mainly I am brimming with exuberance. Moi? By coincidence I had just left a friend in town the afternoon before, on my way to mum’s, who used this self same word about me. Really? I remarked genuinely surprised. I am not in contact with my own exuberance. 

As a child of the 60s exuberance was probably not welcomed outside the family home. En famille (from the evidence before me) it looks as though I was loved, no to say indulged for it. I suspect this is the secret of my resilience as a late diagnosed autistic human. 

Exuberance is something which can be crushed though, and this is a sadness to me. Though if I was/am that child I see, I can begin to reclaim her. 

This thought brims over and excites me as much as the heady detail of sock and shoe, and each re-remembered dress. Material memory, is a truly wonderful thing. 

NB. 10 days have gone by since writing this piece and I’ve been struggling with flu ever since. I must have caught it on that damn train! 

Sharing practice as an ‘autistic artist’ – some personal observations on ableism.

December 5, 2018 § 3 Comments

Sonia Boué, Dirt Cups, 2012

I’m still processing. 

This is a phrase commonly heard among a particular cohort. The group in question is a network of autistic women (I’ve come to know) who’ve been diagnosed autistic late in life. 

What I’m processing (to get back to it) is a first ever experience of sharing my practice as an ‘autistic artist’. Previously I have only ever had cause to share my practice as an artist, period. Let me tell you, there can be a huge difference!

For the first time, I understand the fear attached to being labelled.

Perhaps to no surprise, it turns out that outing yourself (to people who don’t know you well enough nor have an evolved understanding of autism) closes down the shutters of perception. It can even dictate (it seems) what is considered fair comment – the like of which I don’t think would be tolerated for any other minority group in the room. We probably occupy what is currently the last frontier in minority rights. Others will emerge, I’m sure. 

When I share as the usual art me Sonia Boué specialising in postmemory work relating to the Spanish Civil War – I feel understood. I never fail to be met with respect and often even a gratifying interest in the many layers of my practice. Hurrah! 

It is also understood that I have a track record, that I’m a professional person who has worked hard and gained significant experience in many areas of practice. So far so brilliant! 

I have always felt included and certainly never felt ‘othered’. What I now know of as privilege. 

I wish I could say that I was afforded the same respect when presenting my work as an autistic person more recently. Ableism klaxon!

With hindsight I can see that it was my fault. Doh!

I had tried to broker any misunderstanding of my practice head on. My work is implicitly autistic (because I am) but autism is not my subject, was what I went with  Keep it simple, is a motto I try to live by. 

But I had opened a crack in the door for ableist comment and aggression to pile in (unwittingly, it has to be said). 

Do I exaggerate? No, not really. 

Autistic people are subject to aggression and disrespect all the time. It’s just that I’m masking and passing usually. 

A code of practice? 

For me this has highlighted a particular need for a code of practice when sharing our work as autistic artists, which I feel moved to think about more deeply – and process a little more. 

It shouldn’t be needed and perhaps won’t be in all contexts – but until we make more progress on autism I’m for being ‘share ready’ or indeed not ready to share. I think this is about being more boundaried as individuals but also about pooling knowledge on how to highlight and protect the needs of a community of creatives that is now coming forwards. 

A great deal of what I encounter in my mentoring and consultancy practice is a gaping hole around ‘mindfulness’ where diverse neurologies intersect. I’m not talking about a buzzword version of mindfulness. I’m referring to slowing down to a speed at which we can ALL process more effectively. I ‘m talking about (where we can) controlling the parameters of our engagement. This is my ambition for my cohort. 

It is an absolute myth that good work happens at speed or that those who are quick are also more effective. 

In my minds eye I see a giant hand. The palm is out-turned, signalling stop. It is gentle but firm – not a deity but rather a traffic signal. 

I am secretly enamoured of the road sign and street paraphernalia that controls the flow of traffic. I long for tee-shirts with stop and go symbols! No entry! One way! Dead end! All beautifully simple and clear as means of communication. 

You can’t get a license to drive until you’ve learnt the Highway Code for a very good reason – you’d kill or get killed pretty quickly without it. 

I like the idea of a nice laid out set of rules for engagement. I like rules. 

My ideal beginning for sharing my practice as an autistic person would be; STOP. LOOK. LISTEN. (responses on a post-it note ONLY)

Now where have I heard that before! 

I am an artist. I am also an autistic person. I live in sensory peril.

October 28, 2018 § 13 Comments

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I am an artist. I am also an autistic person.

The other day someone rudely crashed into my Twitter timeline expecting me to embrace a sudden urge to include me in a conversation about their work on embodied experience and the sensory world in a wholly unrelated context. I won’t say more as I’m not into identifying people, but the stall set out in just one Tweet was honestly not in my area. Not even close.

It’s a good example of a growing phenomena of people wanting some of the good stuff, ie the benefits of authentic autistic insight, but chasing like puppies at the first ball in sight.  Perhaps predictably (and with equal speed) they crashed out again when I made clear my inability to speak to their area of interest. Better to be honest. It’s okay – social mistakes emanate from both sides, (though it’s time to admit to this true fact).

What crashed into my timeline that day was privilege and false equivalence. The sensory world and our survival in it is not a drill for autistic people. So please don’t come to me with your teaching tools and professional insights. This is mere hobbyism in comparison.

You see I’m deeply interested in sensory survival, because sensory stress disables and ultimately kills autistic people. I’m not being sniffy if I don’t want to play with you, but please understand that I’m just not your go to generic autistic. I’m a professional artist trying to survive and improve conditions for late diagnosed autistics and for future generations too.

I am an artist. I am also an autistic person.

I like to say that I’m an autistic professional, not a ‘professional autistic’ – and I say this with no disrespect to those autistics who do consider themselves professionals in the area of autism first and foremost. I’m incredibly grateful to them for their work – but this isn’t my identity.

I am an artist. I am also an autistic person.

The sensory torture of a hospital environment became my reality a couple of weeks ago, and I’ve been forced to reflect how much activity must be sacrificed to manage sensory stress in my life.

It’s been a tough lesson, and I’ve been made aware of my unusual level of privilege with regard to sensory stress at work.  In fact – without my realising it consciously – my working life is organised around sensory stress.  I’ve compensated for it without even knowing it. I work freelance, and increasingly I work from the comfort of home.

Hospital was only a series of day visits to support my nonagenarian mother. BUT, as I imagined my own hospital stay, or working in such conditions, I felt the scales rapidly fall from my eyes. Here is a flavour of my long visiting hours and the level of challenge such conditions can imply.

Another layer of the autistic onion peeled away as I clung desperately to my composure under the cruel lighting of a small shared hospital ward.

Myriad whirls and bleeps monitored patients, during endless hours of uncertainty – in a vacuum of information – as staff in varying shades of uniform darted like fishes, eyes down. I was in foreign waters.

Hierarchies of need, codes of conduct, signs and symbols – all had to be absorbed – and so the decoding began. I knew I must measure each interaction carefully. Life and death hung in the air – I am busy, I am busy, the staff blared silently. How to signal that I posed no threat? How to soothe and inch my way towards the person inside the uniform? I know, I KNOW, I wanted to say. I will only take a second of your time!

It was a long game of observation over many hours. Snatches of information – disjointed – because it takes many parts to care on such a scale not all of which connect. Time, so much time…

Sudden changes. My mother was moved at dawn, a wash bag and reading glasses left behind.  A new scene – entire geographies to absorb on my arrival the next day. A ward of four women in varying states of peril. The layout is key – architecture and uniform colour signals who’s in charge, and who I must woo. Judgements are quickly made, but I am slow.

And now I am in it once more. Reliving it.

The vertigo sets in. Tinnitus too. The lighting drills into me and I fight hard to deflect it – I have along day ahead. A pitiful curtain shields a terminally ill woman as she retches up the awful hospital Friday fish lunch in the bed next to my mother’s. She is two hours at her labour, and her family rush back and forth with cardboard bowls. Can no-one do anything? She needs a private room.

My mother is quite deaf and I encourage her to take her hearing aids off.  Television now costs a bomb in hospitals and so the distraction of daytime TV is lost as no-one bothers. Ghost TVs perch on brackets above every bed. Heartlessly we do the crosswords my mother loves. She is losing heart and fearful that she will never leave this place. I’m desperate to keep her spirits up.

Later I encounter the woman’s son at the nursing station.

Your poor mother, I’m so sorry we did the crossword while she was so unwell. It had felt callous and uncaring, but what to do? You were right to distract your mother, he said kindly. We exchanged stories, which somehow led to a shared history of watching the 1970s TV series Crossroads, famed for its turgid scripts and wobbly sets. It was equally adored and ridiculed in its time. We managed a laugh, but his mother was dying.

This was beautiful and terrible. I felt intensely connected.

Hospital time is not the same as in the outside world. To enter is to surrender your agency to both the care and will of others, and to a system. That system is housed in the kind of environment that I’m sure no-one likes, but has people like me scratching at the walls to get out.

There were screamers in that long corridor of rooms and wards. Generally the screamers got their own room. I’d be a screamer for sure.

On my third day of visiting I checked out at 9pm, drove to my mother’s house in a complete daze, and resolutely left the lights off. I didn’t want any food. I couldn’t swallow. I couldn’t speak. I ignored my dear sibling and their family and went to bed in the spare room fully clothed, jabbering to myself, it’s just a meat factory…. When my husband rang me all I could do was bark like an angry dog. It’s often the person you trust the most who feels the brunt of your sensory distress.

I am an artist. I am also an autistic person. I live in sensory peril.

This is my admission to myself and to the world. Mainly, I manage my life, I am happy and I am loved. But it is very hard indeed when I am out of my bubble.

I have had many accidents in my life, falling off my bike on a major roundabout is the only one I feel comfortable sharing. Having witnessed several cyclist fatalities in Oxford city I now don’t cycle because I know my physical limitations. Accidents of this kind are due either to a sudden onset of vertigo or sensory overload.

This is something I wish all hobbyists to understand. I’m not hostile and I’m not angry. I’m just busy trying to survive.

 

 

 

 

 

 

 

 

Giving is getting: the social ‘cure’ for autism (the power dynamics exposed).

October 12, 2018 § 16 Comments

Sonia Boué, artist performance image.

Sonia Boué – process image for a forthcoming performance piece.

I acknowledge my privilege – I am enabled to give in my art practice. How many autistics are excluded? Process image for a forthcoming performance piece. 

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Giving is getting.

Yes – I’m talking power dynamics and socially embedded disadvantage.

My thoughts flow from a series of encounters.  Most notably a comment about ‘functional’ language in autism. Neuro-normative culture misinterprets autistic expression.  It tends to frame what is considered  ‘functional’ through the lens of its own (culturally dominant) social orientation.

Dominant cultures tend to make pathology of what they perceive as ‘other’. For example, not recognising language acquisition on its own (collecting and repeating words) as functional because it seems to serve no obvious ‘social’ purpose.

Neuro-normative hegemony has it that a child of a certain age ‘should’ talk about their day, their friends, and so on.  Within this framework of understanding, building a vocabulary relating to a ‘special interest’ would probably not be considered  ‘functional’ even if it is a shared (and joyful) activity (ie between parent and child).

To the neurodivergent eye (and heart) these interactions (based on repetition) can appear intensely social. They form the back and forth of call and response. Word acquisition can be a joy in itself, which can be shared to the point of deep bonding. It’s all a case of tuning in.

But neuro-normatism (if I may call it such) doesn’t meet autistics even quarter way, and there’s a deep lack of welcome for ‘otherness’ which kicks in early.

Thinking about autism as a culture (rather than a medical diagnosis) strips back the skewed deficit models that neuro-normatism imposes on us.  It breaks my heart to think that what so many neurodivergent children experience is – simply put – a lack of welcome. All because our ‘receiving culture’ (neuro-normatism) fails recognise us as a minority culture.

But, we are far greater in number than anyone knows. I knew this the day I began to recognise my own autism because I had been party to a major historical blunder about what autism is. Figures vary greatly depending on the source, but daily ‘ordinary’ citizens are discovering their autism. This trend will continue as more of us gain access to the right kind of information.  We’ve been mislead on autism since the term was coined by Leo Kanner in 1943 to describe only the most visible members of our tribe.

A welcome – in cultural terms – is going to be increasingly important as our numbers grow.

We are many, but – even if we were not so great in number – the failure of welcome is a gross social injustice to us.

Big money can invest in gene detection and ‘cure’ (anti-welcome) but advances in thinking and understanding of autism will ultimately outstrip this kind of project, I believe. Nothing convinces me that autism (as a biologically driven social orientation) can or should be cured. To be clear, I’m not talking about co-morbid conditions, I’m talking about the core features of autism.

I know some who feel cursed by autism (due to societal cruelty) and want a ‘cure’. I respect this and mourn the lack of anything near genuine welcome in their lives, which is I believe the root cause of this negative self image. We practice a ghastly death to difference in the post-modern world with the deficit model of autism, and it’s a cause for profound grief.

But stripped back and laid bare – borrowing the language of ‘cure’ momentarily – the ‘cure’ lies in the social realm. The remedy is social progress. The ‘cure’ is welcome (genuine welcome that is), and this has everything to do with giving and getting.

You can’t welcome what you don’t perceive. A culturally dominant misinterpretation of autistic focus and communication creates a feedback loop of rejection.

There follows a process. When your natural and joyful communication is stigmatised you are barred from giving (unless you learn to conform). Those of us who learn to adapt do so at immense cost (which is unsustainable), those who can’t are quickly marginalised.

But wait, what am I doing talking about giving? Surely I should be focusing on what autistics need to be given by others?

And here we are. We are brought up on the truism that giving is receiving, but this is usually meant as a somewhat vague spiritual reward, and is rarely understood (or acknowledged) as a power dynamic.  My use of the word getting is very deliberate – it is active, whereas receiving is a passive word.

That our fundamental need to give in order to get is seldom spoken of is (at bottom) due to social lying. Neuro-normative culture sentimentalises what is in fact a vital social contract.

People who give are good, worthy, inspiring and downright decent human beings. Yes – they can be (I don’t deny this) , but people who give are in a position to do so. People who give get back untold riches – and not only of the spiritual kind.

Countless micro transactions take place on a daily basis in which invaluable commodities are exchanged. Good will is perhaps one of the most important commodities of all. In so very many contexts good will can be converted (somewhere along the line) into hard cash. Social fluency (of the dominant kind) creates the conditions for this powerful ‘alchemy’.

Without the means to wield this power autistic people can fall prey to a form of ‘social’ poverty which can create a devastating impact on a person over a lifetime, from infancy onwards, from the point at which a child’s babbling is labelled ‘not functional’.

I feel it is this anti-welcome culture which creates a deathly cycle of rejection. Some can face a lifetime of not getting.  This is not just manifest by the grand obsession with ‘curing’ us, it is articulated through every organ of the state in which autistics are deemed deficient and our communication dysfunctional.

This is a catastrophic pile-up of not ‘getting’ which can result in lives lost, lives not lived even halfway to the full, and lives lived on the margin of both economic and emotional survival.

As I write, a vast clump of anti-welcomes forms before my eyes, like a scrap metal tower teetering up into the sky. I tilt my neck, but I cannot see the top.

It sounds like an exaggeration – I wish it was. The truth is that the current neurological hegemony practices daily micro-aggressions in which autistic people are not welcomed. They’re also barred from giving in the mainstream of life.

Some of us experience just enough welcome (important to acknowledge a relative privilege) and gain the tools with which to carve a niche. But too many don’t. Every human needs a baseline of welcome, and access to the power of giving.

Giving is invaluable – a golden seam with which to make a life whole and prosperous. We all need access to the endless rounds of being there and fitting in that a neurologically sanctioned childhood brings, all of which leads to the kinds of ‘getting’ I’m talking about.

For any of this to be put right we need a revolution – and I do believe it’s coming as our understanding about autism continues to grows. At heart the measures needed are truly simple.

We need to change the language of deficit and take the focus away from a ‘cure’ for autism. We need to begin with an open armed welcome for neurological difference within the spectrum that is human culture/s.

We also need to understand that this is not a question of kindness. This is about understanding the nuts and bolts of social power. This is about giving as a right.

 

 

 

 

 

 

 

 

 

Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

IMG_4621

Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.

I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.

I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.

I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.

Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.

Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.

There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?

Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.

It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.

Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.

I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.

We seem to use it to bash each other over the head, and I’m just not up for that.

I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.

This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.

In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.

I am both pulled about by my own privilege, and afraid of repressive impulses in humans.

If you follow my art practice you’ll know that I have good reason to be.

http://www.soniaboue.co.uk

 

 

 

 

 

 

 

 

 

 

 

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