April 11, 2019 § 2 Comments
What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.
Soon I will be asking the artists on the Arts Council England (ACE) funded Neither Use Nor Ornament (NUNO) project, how was it for you?
I have to do this as part of my evaluation process, but I’m also genuinely curious. This has been a unique project in which I have explored what it means to lead autistically (in my case).
I won’t have got things ‘right’ in all cases, but we made it to the finishing post of our exhibition opening in quite some style. I’m anxious to hear if and how my leadership has made a difference to the artist’s experiences of participation – and if this has further impacted their lives.
What I can tell you is what this project has done for me, by investing in my participation as a ‘player’ at a more senior level in my profession. In doing so I make the case for more of this for more of us. Autistic arts professionals are currently lacking such opportunity for progression – not only as artists but also as artist organisers. This needs to change.
It’s really very simple. In enabling me – through funding – to lead a significant project like NUNO, ACE have helped me to shift from a state of aversion to one of enthusiasm. Autistic aversion (in my case), I see now, was clearly fostered by a lifetime of exclusion. Not understanding neurotypical social code is perhaps where an autistic person begins in life, due to fundamental perceptual differences. What is less understood perhaps is the continued impact of this as a mechanism of our exclusion across a lifetime. Or indeed, what might happen in terms of ‘social appetite’ if the dynamic of exclusion were somehow ameliorated by genuine inclusion at any given point in time. It’s all so obvious once you’ve lived through it, but how many of us get this chance?
I feel we should be more aware that for some autistics social exclusion and a resulting aversion is a dynamic predicated on social bias, which once in play generates a serious barrier to our ability to decode social situations over a lifetime. Through such a dynamic myriad points of learning are lost, by which I mean two-way learning.
So what impact on the possibility of ‘social learning’ across neurologies can genuine inclusion make? I pose the question thinking that I know the answer. I think the impact can be highly significant because of the quality of my own experience in my shift from aversion to enthusiasm. Suddenly, elements of shared social spaces stack up. I am exposed to learning and foster learning in others. This is a two-way conversation.
I’m careful to mention the other side of the neurological coin in terms of learning (so-called neurotypicality). I’ve found that leading as an autistic person enables learning to flow in all directions. Neurotypical learning around me is probably the bit I can’t see, but which I reckon has made a whole heap of difference to how I am received and therefore to how I feel. I know that I am lucky in this regard – it can go so badly wrong when people can’t listen well. I’ve built up to this moment and have chosen my shared social spaces very carefully.
Being a ‘player’ has been vital to this process in which I now find myself wanting to engage with people and places in new and unexpected ways. I still crave a duvet day when life gets too busy, and I don’t love crowded events or small talk. I haven’t stopped being autistic – that not a thing, and I wouldn’t want it to be. What I’m talking about is appetite. The vital waters of my professional life no longer feel cold and uninviting. What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.
Social anxiety and social sensitivity are often seen as negatives, but what if they have fostered a deep sense of responsibility and generated a high level of care for the people on my project? I myself know that they most definitely have. What also, if by some mechanism unknown to me – other than sharing my neurological status and leading autistically – I have been treated more carefully in return? I feel this must be true.
What if seizing the opportunity to lead autistically and to design my project as accessibly as possible has led to something really fundamental? I look forward to gathering more evidence for this exciting notion in the weeks to come.
Currently, we lack models for what is needed to challenge the stranglehold neurotypicality has had on our culture. The dynamic it creates for autistic people is, in my view, toxic. So I very much hope that in time NUNO may provide one such needed template for others to riff with.
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.
Press release is on our website https://www.museumforobjectresearch.com/press/
December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.
I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.
Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.
Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.
The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.
A non sequiter I know.
The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.
So my boxing day was interesting. I spent the day in a blur playing catch up.
Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.
But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.
It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.
So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.
My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!
Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.
So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!
I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.
So my New Year resolution is very different this year. For 2019 I promise not to change a thing.
December 23, 2018 § Leave a comment
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!
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!
December 5, 2018 § 3 Comments
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!
October 28, 2018 § 13 Comments
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.