Autism and labelling; outing myself for #NUNOproject

March 22, 2019 § Leave a comment

This week I’ve had cause to think again about the question of autism as a label. My default position is to feel autism as an identity. For me this is joyful and unassailable. Try to wrest it off me at your peril.

My team and I are in the final run up to the Neither Use Nor Ornament exhibition, otherwise known as #NUNOproject. Our work has been to create an equal platform for two artists networks, one identifying as neurodivergent and the other as neurotypical. I’ve had to adapt the project as we’ve gone along, due to artists’ highly understandable sensitivity about ableism. It would be an understatement to say, we’re not there yet, re public perceptions about autism. You can read about this in a newly published, curated collection of blog posts on our lovely Museum for Object Research website.

In terms of the project this is something I’m still brain-wrangling. My priority has been to create optimal conditions of access and benefit to the artists involved, but if we’ve been funded on an autism ticket what does ditching labels mean in terms of delivering what we promised? We are, after all, committed to challenging public perception.

I am painfully aware of my disabilities at times. I am seriously compromised by dyslexia and dyscalculia, and this project has often pitched me against myself as project manager. I never felt so aware of my limitations in this regard – for me the rules of spelling and grammar are seriously disabling in ways I can barely explain. I will NEVER learn them, or be able to see on a page where my errors lie. In my world view, insistence on them is traumatic and oppressive. I will always fail to meet their standard, and can’t fully grasp why they matter. Computer says no.

Acquiring help is the obvious answer, but nonetheless, alone I cannot do the job. Don’t even get me started on numbers. The word nemesis doesn’t cover it.

Don’t doubt the shaming or exclusion involved in specific learning disability, nor the impact on a person’s life. I am seriously compromised when navigating new or complex travel systems, for example, which can render me as helpless as a baby, and entirely reliant on the kindness of strangers. And forgive me if you do identify as dyslexic or dyscalculic, what I am about to say is entirely personal to me as I do feel that autism is perceived differently. I understand that others might not agree.

However, foolish I may feel (or may have felt historically) I know at least that I am unlikely to be othered for my seeming ineptitude. I will generally be meet with sympathy, and usually kindness. Invariably, I meet someone wonderful who takes me under their wing and who goes the extra 500 yards to see me on my way.

Autism is different. Out yourself as autistic and you’ve got a whole new ball game going on. This is why I have yet to out myself to strangers in extremis, though I have been close to it several times since my diagnosis. A meltdown on public transport has only been averted by my time honoured strategy of asking someone to help me filter and decode the information I need by explaining simply that I can’t work it out. I have never explained yet that I’m overloaded, or so desperate that I want to throw myself down on the platform. And no it’s not a tantrum, now we’ve got here.

So what happens when you out yourself to a whole network, and an entire community all at once? What happens when every person who works on your project (from your exhibition poster printer to your booklet designer) knows you’re autistic? Every person who visits the OVADA gallery during our show will likely read the poster, which says I’m autistic, including the current Lord Mayor of Oxford.

Next week I will go on BBC Radio Oxford to talk about my project and my autism. I hope that copy about my project and my autism will appear in the Oxford Times next week too.

I have thoroughly outed myself in new and diverse ways. Okay, I’ve been writing about my autism for three years online, but people in my neighbourhood will now look at me anew, and I will soon know what it is I have done in creating #NUNOproject on the most personal of levels. Every person in my professional network will know I am autistic – and this will surely impact my future work in ways that are unknowable to me.

I recognise that in some profound and irreversible way I’ve unmasked myself, and that yet in doing so I’ve hardly faltered, feeling that it is worth it for my community and for the future I want for my children. But it’s not all about altruism and social change.

I’m an autistic person who embraces my disability as identity (not all of us do), and finds the ‘label’ liberating. The more I push through the better my life gets. I only struggle when confronted face to face with people who are patronising, angry, or want to deny my struggles. I chose to paddle away as quickly as possible. I’m too old to spend my time engaged in this kind of nonsense. I’ve spent too much of my life confused and wrong-footed. But I have the luxury of choice because I am a freelance professional, and of an age where the tendency to please others rapidly diminishes.

I feel there is something ineffably powerful in gaining congruence – though I see this as privilege, because so many humans are forced to be other than themselves to fit in. Once tasted, congruence is so good it’s almost addictive.

I remarked the other day that I now no longer think about my autism so very much. It’s not the first thing on my mind when I wake up, and I no longer have to pinch myself. This too is privilege, and a sign that my life is presently aligning with my needs.

A powerful predictor of our resilience lies in the responses to our autism in those around us. I’ve benefited hugely from the love of my family and the bonds formed both online and IRL with my autistic community.

I want more of this for more of us, but I will be telling Arts Council England that our relationships with autism are complicated. We need to build choices about masking into opportunity, and allow for the impact of a lifetime of ableism on an individual to create fluctuations in confidence about unmasking. Unmasking can be wholly situational and should not be treated as a static goal, in my view. We also need to be aware that ableism can make a label out of identity. Finally, I will pose the following question in my evaluation; how ethical is it to encourage artists to unmask for their art?

My future vision, conjured by this blog post, is to create an art project as a sanctuary for artists, as a space for recovery and renewal, without the pressure to perform an identity or assume a label to earn the privilege. Watch this space!

Goodbye for now, but hope to see you at our opening event!

If you can’t make it, we look forward to seeing you online, and you can catch all our content here.



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#NUNOproject – a case study in inclusive practice

March 9, 2019 § 2 Comments

This blog post was first published on @an_artblogs

I’m very interested in inclusion. This is probably because I’ve experienced exclusion. I know what’s like to find yourself behind a glass wall looking in.

As an unidentified learning disabled child, I failed the 11+ and watched my sibling sail through the gates of a prestigious independent school. My parents were a teacher (at the same independent school)  and an academic at the local university, I felt foolish and left out when each morning they journeyed together in the family car, while I took a long bus ride alone to a pretty rough comprehensive school which has since been razed. It taught me a great deal.

I know what it is to try and to ‘fail’ early in life. Bewildered by an exam I couldn’t decode, I couldn’t know at this time that the system was failing me. I look back now and see the system as failing many.  Don’t get me started on education cuts and the news that some schools now have to close on Friday afternoons.

I remember smelling privilege at the independent school’s gates on the odd occasion I found myself there. I looked on and saw confidence and opportunity oozing from the very fabric of the building. I understood that I was an outsider, but could not have articulated it. The world inside this place simply felt intimidating and unreachable. A closed door.

Did I want to be part of this world? I really don’t remember, but I know I felt lesser. I didn’t discover the joys of study until I was 16, but then with my geek fully on I began to motor my way to university. It wasn’t plain sailing. I struggled greatly with my learning and will never forget the powerful knock back from a tutor in my second year at uni, who told me my work lacked the polish of my privately educated contemporaries (of which there were many studying history of art at this time!) Yes, this was 1982 and this conversation really did happen.

Red rag to a bull, I summoned my geek and got a first class degree.

I haven’t yet touched on how undiagnosed autism has impacted on my trajectory, nor the importance of a diagnosis in overcoming barriers. But I’ve written about this extensively on The Other Side.

My story is just one – of exclusion, and of pushing through. Each of the neurodivergent artists on my Arts Council Funded project, Neither Use Nor Ornament, (NUNO) will have their own story. On NUNO we are working to address the impacts of exclusion over a lifetime. It is very deep work indeed, which has required great thought and adaptations along the way.

Working responsively means that NUNO has had to change shape in the making. A fact of which I’m incredibly proud. I’ve observed that the neurotypical template for freelance project work seems to be that we must adapt ourselves to a pre-designed project. In this model the ‘project’s needs’ are paramount. NUNO turns this on its head. Artists needs are my first consideration and if I haven’t got that right I must adapt the project.

This process has taken place throughout and as we get closer to delivering our project I’m looking forward to the richness of the evaluation process.

I’m not blowing my own trumpet. Daily I give thanks to Arts Council England for backing the project so that I could work with 13 incredible artists across neurotypes. It is extraordinarily hard work to project manage, I often have to work against myself as so many tasks fall to me which require heavy duty admin, and that’s just not my forte. Next time can I have a PA please!

But we can’t wait to show you our work – it’s such a rich offer due to the wonderful NUNO artists whose object-based practices we are lucky enough to showcase. Bring it on!

Register FREE for our spring event at our Eventbrite page or just turn up! We’d love to see you.

https://www.eventbrite.co.uk/e/neither-use-nor-ornament-exhibition-nunoproject-public-opening-tickets-55013404574?aff=eivtefrnd

Press release is on our website https://www.museumforobjectresearch.com/press/

Fancy a bit of ableism? I know you mean well but…

February 2, 2019 § 4 Comments

Yes – it’s happening again. Well-meaning cookie-cutter ableism is at the heart of a theatrical production in the UK once more.

We’ve been here before quite recently with Kibo Productions The big Things, in 2018; non-autistics writing plays with autistic characters determining the action, their autism and their characterisations being ‘othered’ right down to the marketing.

For All in a Row the autistic character is played by a puppet, and the marketing features an image of a row of three yellow fondant fancies with a single upended blue fancy to signify autism. It is immediately apparent that despite its focus on a minority group this production has failed to consider the need for sensitivity consultation.

You have to wonder if in the UK in 2019 this would happen in the case of any other minority group. The problem here is that the adult autistic community is not considered where portrayals of autistic children (or indeed adults) are concerned.

In both cases we’ve heard online from the playwrights about their genuine credentials for writing on this subject – the close friends, the years spent caring on the front line, the meticulous research, and consultation with the National Autistic Society (NAS) – perhaps flirting with the suggestion of an endorsement.

Yesterday on Twitter the author did respond to Tweets by @krystinanellis, some of which I think have since been taken down, but Alex Oates seemed to suggest that the character could not be played by an actor because it was so ‘individual’. Alex consulted parents, they loved the puppet idea, puppets make terrific theatre, et voila!

I’m torn between the puppet device and the blue ‘tits up’ jaunty fondant fancy as to which I find most offensive and frankly ‘othering’.

The play promises to be ‘startling’. It already is. The author promises a video explaining the thought processes behind the puppet idea. I heart the Tweet reply from @g_ting

Once a production gets this far those involved invariably dig in. They have no other option. Obviously with hindsight they should have considered community and avoided such a horrible blunder. Yet again we face the painful truth that adult autistics are not ‘in the room’ yet. We remain invisible until we speak out, which is why I’m spending my Saturday morning writing this post.

It’s really very simple. Creating an autistic character that can’t be portrayed by a person, where all other characters are played by people, is dehumanising. Using dated and clumsy marketing, especially using the colour blue (which is associated with problematic Autism Speaks imagery and campaigns) signals ignorance and stumbles unwittingly into the territory of ableist propaganda.

I wish I had time to write a more eloquent post. I wish I had time to mount a campaign, but I’m too busy trying to work constructively for my community to take this on.

I hope that by speaking out I can join the conversation and inspire others to form a plan.

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.

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! 

Where Am I?

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