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! 

What does inclusion look like?

November 22, 2018 § 2 Comments

Detail from a work in progress for the Neither Use Nor Ornament project.

In my day job I am a visual artist with my own practice, but I’m also a community artist, mentor, trainer, and consultant. I work on various community arts projects as a freelancer, and I also lead my own project over on The Museum for Object Research.

I’m writing to share some of my findings after three months of working towards an inclusive Arts Council England funded project, where autistic and non-autistic artists will  exhibit their work together (in March/February 2019 in Oxford). So there’s still a way to go. Our project title is, Neither Use Nor Ornament, or #NUNO for short.

It began with the grand idea to bring together two distinct networks, one predating the other. The longer standing group of non-autistic artists were to show their work in an exhibition that had already been planned. The newer group of autistic artists would create an events programme to run concurrently, thereby creating a distinct but equal platform while allowing for a cross-pollination of ideas and influences.

In my minds eye – the group show appeared as a fixed point at the core of the project and  the events programme whizzed around it like a Catherine wheel! I liked thinking about the dynamic interdependence of each element as a metaphor. Could this be a new model in the making?

Audiences would certainly gain a sense of contrast – and when we began the project, the two networks were indeed quite separate, their only real point of intersection being me. But would it make any sense beyond my own imagination, and would this represent genuine inclusion? As a visual artist especially I need to ask myself, what does inclusion look like?

The project (in a nutshell) is really about one person’s professional journey towards congruence after a late diagnosis of autism, and their (my) greater commitment to journeying in company for the benefit of a wider group. My project is about making change happen for some of the artists involved, it also seeks to inform arts organisations.  Challenging audience perception is important to us though our spirit is not confrontational.

Our first model was what you might call high on visibility.  At this point, I didn’t know any better.

High vis ( or ‘Day-Glo diversity’!) could meet with approval from a body like Arts Council England, who we know need to be seen to be doing better on this score.

But as my project progresses I’m increasingly wary of the Day-Glo approach, which you see quite a lot in the arts right now. Genuine work is taking place in some cases but I’m disquieted by this trend in diversity signalling.

Inclusion should be an every day thing, rather than exceptional.

A hegemonic insistence on ‘normality’ conditions us to believe that signalling ‘difference’ in highly visible ways challenges perceptions and therefore creates an instance of inclusion. There are times when this works precisely because our assumptions about who can be a player in society are so rigid.

But this strategy of ‘watching’ difference and ‘noticing’ it (as inspirational often) implies a norm from which ‘difference’ is discernible. This is hidden ‘centring’ and we must tear off the fetid blinkers of normality conditioning to see it.

Losing that fixed point, ditching that norm, and embracing diversity within humanity as the default setting would have us up in arms at the inequities of our very biased everyday assumptions.

At this point I refer back to the wisdom of an autistic child I knew, whose logical insistence that if we’re all different (as we are) then nobody is special when it comes to educational need (or anything else for that matter).

Ghettoisation (in the name of inclusion) within mainstream education can definitely be a thing – and it has marked this young person – as a teenager their instinct for survival prompted them to ditch all visible support. Not wanting to appear ‘different’ (because it so stigmatised them) tells you everything you need to know about being singled out for ‘special’ attention in ‘mainstream’ education.

Obviously school pupils turn into adults. Some will go on to wield power and be the decision makers of the future. What will inclusion mean to them? What does inclusion look like?

Some of them will also buy lottery tickets – an important source of Arts Council England funding streams. Therefore (if current systems remain) some of these pupils will go on to fund  projects like mine. Their adult counterparts of today have indeed funded my project, and ideally they could be among our audiences too. 

My project is an attempt to reach out across these invisible fault lines, but the scales have fallen from my eyes. My Catherine wheel was never going to take off, I was in thrall to a ‘neurotypical’ hegemony called ‘normality’.

As our work has gone on, I’ve listened to the artists on my project and absorbed the effects of high visibility on each one of them – and not all of them want it. Creative practice may seem like a ‘safe zone’ for the kind of self expression which extends to autistic unmasking – but how safe is it really? The problem with gaining a professional platform is precisely that you can be seen. Irony!

And where invisible disability is concerned (such as autism) – some of us have been conditioned to mask our difference in order to survive – stigma and discrimination threaten if we show ourselves. 

Art practices do not exist in a vacuum and art alone cannot dissolve ableism – we’ve needed to get real about this. We don’t chose to use masking strategies, they occur as an  adaptation.  I know that it’s a relative privilege to mask, not all of us can do this, but for those who can it is a right. 

Yet increasingly privacy is being eroded – we are encouraged to share professional profiles on the very social media that friends, families and colleagues use. It is now almost impossible to control personal information which forms any part of a public persona. Very recently this happened to me.

The funny look at the non-autism related exhibition opening. I experienced it only the other day. Oh, you’re Sonia Boué. My ‘fame’ in this instance was an autistic person not an artist. A googely-eyed stare is not the end of the world but it’s not a great look. I’ve learned to brush it off, but that’s not the point. Invisible disability can demand a calculation at each and every turn. It’s exhausting and sometimes the cause of great anxiety.

How much of myself do I show? Where are my safe zones? How often must I pretend and wait for my unmasking?  

Mainly we must ask ourselves, what will it cost me? Will it cost me my job, if I have one? Will it affect my mental health?

Will I be bullied or abused?

And here, of course, my heart bleeds for the autistics who cannot hide. The point is that no-one should have to face this. 

But for me this is one reason why an ideal model of inclusive practice comes without a whizz and a bang. Some of us need to mask our identities while gaining in rightful professional development. 

In any case, I wonder if great inclusive practice is something you can’t necessarily see!

Increasingly, I think this could be a truth to live by. Not only is inclusive practice potentially a quieter, more careful and considered game than I’d imagined, but the ultimate goal is that we genuinely don’t see ‘difference’ because we’re all included equally.

So it isn’t so much about what you see that counts. What matters is the activity that goes on behind the scenes to make a piece of work happen in a manner that’s ethical and beneficial to all.

As I move forward with my project I find that my ideas are shifting.

Our new model is still forming, and the much longed for cross pollination of ideas and influences is taking place. I’m pretty sure I haven’t always got this right, but the learning curve gives a spectacular view. I have a brilliant team and the most wonderful artists on board. The biggest change for me is that I no longer see my project as being one of two parts. Probably that’s what inclusion looks like. 

I’m grateful for ongoing conversations with the Arts at the Old Fire Station & Crisis Skylight partnership in Oxford, and with my mentor Miranda Millward, and with Thomas Procter-Legg Headteacher of Iffley Academy in Oxford, in informing aspects of my thinking about inclusive practice.  

I’m also grateful to Alastair Somerville of Acuity Design for his thinking on normality, in particular his latest writing on Building a normal world.

 

 

 

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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