bunnyhopscotch making sense of the senses, musing over muses… and just having great fun!
In 2015, I created and presented Sonata in Z, from which emerged my now signature concept, “Clement Space“, first installed as its own entity in 2017 at The BIG Anxiety Festival, Sydney, Australia. Thereafter, Clement Space has been installed in different sites and situations, its enduring and developing presence attests to the universal need for respite, especially in frenetic, chaotic cityscapes.
Since then, I’ve been conscious about finding my own pockets of Clement Space too. Most of them are small studies in the state of clemency and grace, little spontaneous moments that bring sparks of Autistic Joy, or miniature physical podlets of rest and restoration found and taken in the midst fluttering, swirling and trundling through the day – not as large as a sonata, they are tiny études amidst daunting and domineering Wagnerian Symphonic Pulverisations. That chuckling shadow of Artaud does add liberal doses of vim and spice to my struggle with Wagner, but Clement Space – inspired by my beloved Lucy Like-a-Charm – is my antidote.
While helping mother locate a lost DC adaptor plug, digging around her drawers, I found some forgotten treasures that belonged to my late father, which mother kindly let me have.
A kidney shaped stainless steel tray containing various surgical and dental tools, and a minuscule pill-box sized leather case with two Chinese name seals inside.
There is a wealth of history behind each of these, but today is not the day to spin long stories. I am happy inside this mental clement space, this suspended moment in time and place, just from having found these objects which reach back into time, connecting me to the individual journeys that each item undertook while in my father’s possession. He is gone now, but a part of him – known and mysteriously unknown – is embedded within. And they are now mine, from Dr. Leong to Dr. Leong, captured inside this moment that I now call, “Étude in Z”.
One silver and turquoise Art Deco hand mirror, one blue velour Parker Knoll armchair: two random items, both of use to their owners, but of no particular significance – until you’re made aware of the history and narrative associated with them, that is.
The art work I make is often motivated by my connection and close relations with family. ‘Here Today…’ was created through assembling pieces from my late Nana’s more personal, intimate possessions and placing them on a bedside cabinet; a hand mirror, a vintage silk flower and palettes of used make up – items that she had handled and used over and over; old, well-worn objects, still in existence and now, with an even greater emotional charge, having survived my Nana by some years.
Likewise, with my late father and the continued presence of a favourite seat. How was it that my Dad’s blue armchair stood so resolutely in the living room of my parents’ home on the day of his funeral, begging the question: if the chair could survive, then why on earth couldn’t he?
Themes of loss and remembrance are present in a lot of the work I make and reflect my fascination with the permanence of objects versus the fragility of human existence – crucially, how things outlive people. The histories associated with everyday objects give the work its meaning, not solely for me, but for an audience for whom some objects will inevitably resonate.
A lot has been written on the subject of the emotional attachments made to the everyday things that surround us, and none more powerfully than Sylvia Plath who captured her love for objects in many of her poems, ‘Tale of a Tub’ and ‘Black Rook in Rainy Weather’ being examples.
Tisha Nemeth-Loomis in her research paper ‘Plath’s Possession Aesthetics: Visual and Object Libido’ wrote:
‘Plath employed a visual exactitude which indicated surprising states of perceptual awareness; it filled her poems and objects with curiosity and dimension. When engaged in these states of visual connection, it is possible that Plath attempted to integrate herself with images and objects. For Plath, objects surpassed the mundane; they were unique, enviable entities.’
And her late husband, Ted Hughes, noted Plath’s psychological investment in the everyday object:
‘This genius for love she certainly had, and not in the abstract. She didn’t quite know how to manage it; it possessed her. It fastened her to cups, plants, creatures, vistas, people in a steady ecstasy. As much of all that she could, she hoarded into her poems.’ (quoted in Holbrook 279)
From a completely different literary genre, I found this piece of writing by romantic novelist Erica James. In this extract from her novel ‘Precious Time’, James describes the thoughts of a character who runs a house clearance firm …
‘It was the bedside tables that invariably got to him. It was in those little drawers that, often, the most personal and poignant objects had been kept, and which gave the deepest insight into that person’s habits and thoughts. Today’s bedside table had revealed the usual old tubes of ointment, packets of indigestion tablets, buttons, rusting safety-pins, bent hairpins, and a string of cheap gaudy beads. There was a tiny-faced watch that didn’t work, a money-off washing powder voucher (dated October 1988), a pair of tweezers, a throat lozenge that had oozed a sticky trail across an envelope of black and white holiday snaps, a crumbling bath cube that had lost its scent, and a small trinket box containing a collection of Christmas cracker jokes, unused party hats, two plastic whistles and a key-ring. There was also a small Bible, its pages thickened with use.’
It’s difficult sometimes to find the words to convey the true, agonising sense of loss and the very powerful emotions that we project onto objects that are left behind. Items presented as objects of remembrance and associated with the dead, are imbued with deep sentiment and emotion.
The hand mirror bears the physical marks of a well-used object, the metal and patina worn and eroded by my Nana’s endless handling of it. My Dad’s empty, unoccupied armchair, following his death, came to symbolise his absence, heartwrenchingly so for those who loved him – his revered place within the family unit and the actual physical space he once occupied. How on earth can we ever find it in ourselves to part with such precious items?
The reality is of course, that we can’t keep everything and for practical reasons, some things in our lives just have to go. House moves, house clearances, downsizing, relationship break-ups and other life-changing events inevitably lead to a serious rethink and overhaul about what we can and can’t keep.
William Morris stated that we should have nothing in our houses that we did not ‘know to be useful or believe to be beautiful.’ While I understand this sentiment, I know that peoples’ homes sometimes also contain things they positively hate but find hard to throw away – unwanted gifts from long deceased relatives, for example – the hideous ceramic owl inherited from Auntie Elsie who loved it and thought you would, too.
There’s no doubt that the bonds we form with certain objects are stronger than others and that our decision making about what we keep in our homes is often determined by the depth and strength of the emotional attachments we make to them. As time passes, these objects get handed down through the generations; their condition might become more battered and fragile, but their significance and sentimental value continues to grow – living on, immortal and becoming increasingly robust as they accumulate and carry with them, layer upon layer of their ancestors’ histories and narratives.
Hello! I recently attended the most marvellous conference in Cork. I’ve come away refreshed and reminded that conferences can be both stimulating for artistic practice, and also provide a framework for what we artists do. I love a good conference.
All Things Considered had a lovely spirit and provided an unusually good fit with my own areas of creative research. Aside from one awkward moment, all was harmony and light. The moment in question was in some ways quite comical, as one speaker complained about the problem of living artists (sic).
They sometimes insist on vetting and controlling what is written about them. It’s. real problem. You have to wait for them to die!
Laughter, of course, erupted in the room.
It was a moment of unmasking – unaware perhaps that there was a living artist in the room – the speaker had revealed to me a sudden and vertiginous window into the academic perspective. But we were just warming up.
A delegate beside me had thrown their arms up in protest, and so I knew I had a friend. Well I’ll just throw myself under the nearest bus! I quipped in mock outrage, but the sense of outrage was also real. The statement was both serious and made in jest. There’s a truth here wriggling to come out.
It was, of course, also secretly fascinating, and it opened the door to another question; in particular that of artists who deny the obvious influences in their work with a specific example in mind.
Who should we believe? someone asked. Never the artist! said a second speaker, this time it was a wholly serious answer.
I felt pleased to be an artist in the room to disagree, or rather to explain nuance. The creative process is complicated.
I loved the dissonance actually. I revelled in the insight. Much academic study deals with the dead, and the relationship between academia and the arts presents a potential quagmire re interpretation and ‘ownership’. For the living artist this is relationship which can be brokered – we need to be in the room at conferences. I am lucky to have had this opportunity quite often since 2013.
This conference has taken me back to the core of my own project, The Museum for Object Research, and my abiding notion that there is an area of study to be made in the use of objects in visual arts practice. It reminds me also that our forthcoming, Neither Use Nor Ornament (Arts Council England funded) exhibition and programme incorporates embodied research. I hope to invite academics to view and comment in a further iteration of the project.
Developing a performance piece, called Hung to Dry, for the conference has invigorated the performative side of my practice too. Oh the joy!
I can’t end this post without a massive thank you to my extraordinary collaborator, and the stage manager/ producer for my performance, Dr Helena Buffery.
Now I want to do it all over again!
See you soon,
All Things Considered…Material Culture and Memory, conference at University College Cork was organised through CASiLac: ‘Memory, Commemoration and the Uses of the Past’ research cluster, Departments of French and Italian, School of Languages, Literatures and Cultures, UCC.
The organisers were Chiara Guiliani and Kate Hodgson.
I thought I’d write a quick blog post, but keep it mainly visual. The Museum for Object Research (Arts Council England funded) #NUNO project is well under way. In fact we’re approaching our fourth month! We have a show and exhibition programme to pull together, and we’ll be making a film and booklet too. We’ll be launching on the 30th March 2019.
A lot of work goes on behind the scenes to project manage – but I’ll also be a contributing artist, and my creative work for #NUNO is evolving.
To cope with my dual roles on #NUNO, I decided very early on to place a cabinet next to my desk. The idea is to experiment with and document the contents of the cabinet as I add them, move them around, and even discard some! Easy access from my desk means I can keep this work in mind and add to it when the spirit moves me. It’s proving to be a deep and very satisfying piece of work. It’s also shifting as I go along, and I no longer know if the title of my work will be as I planned – portrait of my father, may take on a new title and I have to decide before our booklet goes to print.
The objects all relate to my father’s exile from Spain 1939-1989, as viewed through my eyes. It’s a ‘postmemory’ piece, which means that it refers to inherited memory. I love the ease with which this works. I have my tripod always to the ready, and while I began with iPhone captures I’m now using my trusty Canon EOS 400.
What I want to share today are some new photographs I’m excited about. I feel like I’m getting somewhere with the documentation, and have a better idea what I want to achieve.
October 10th, 2018 marked ten years since I first presented 10×10.
10×10 started its journey as part of Deptford X fringe festival in 2008. Ten years on, my intention was to return to the Art Hub studio space in Deptford, SE London, the venue where it was first launched. It was all set for 10×10 to be a part of this year’s Deptford X fringe events – opening up the cabinet of objects for further exchanges and even hoping to reconnect with people who had been at the very first exchange event in 2008. Sadly, due to a two week stay in hospital (the result of a severe ear infection which spread to the bone) followed by an ongoing convalescence period, none of this was able to happen.
In spite of the deep disappointment I feel about having to cancel (not just the Deptford X exchange, but all sorts of other plans), I’m happy that today on the 10 year anniversary of 10×10, I’m at least able to focus on writing and updating some of the narrative associated with the events and exchanges of the past 10 years.
10×10 responded to a call for artists to make work answering to the theme of barter and trade. I gave up 100 objects which were precious to me and invited people to take one, leaving an object of their own in exchange.
Throughout the past ten years I’ve taken 10×10 to a number of venues – Lewisham College, Herne Bay and Whitstable museums, the Stade Hall in Hastings and the First Site gallery in Colchester. Participants were asked to share the stories behind the objects they left behind if they wanted to, but there was no obligation to do so. I’ve collected some amazing stories associated with some of the exchanged items over the past decade; I’m looking forward to writing them up and sharing them one of these days.
The concept of exchange was particularly pertinent in the year 10×10 was launched: 2008 is a year synonymous with one of the biggest financial crises in global history. In the wake of a monumental financial crash, top banks & financial companies folding, I posed the question: how long would it be until people resorted to bartering?
The very act of bartering adds an emotional reality to the process of exchange that currency somehow lacks. ‘What is an object worth to you? How much do you want it and what are you prepared to give up in return?’ are among the questions I asked.
10×10 is about letting go, and exploring the powerful associations that we sometimes project onto objects and the emotional attachments we make to them. It is also about human nature and our response to being challenged away from a monetary system to one of exchange and barter. ‘Would it be people’s generosity or meanness that triumphed when it came to the value of the objects that were bartered? Would the piece be ‘worth more’ at the end of the process?
10×10 was once described as ‘a comment on humanity.’ It has been fascinating to witness the various ways people have responded to the exchange process. Overall, humanity has come out of it pretty well. Other than a restriction on size, people are allowed to leave whatever they want and for the main part, people have responded with great generosity and thoughtfulness. There’s always the odd ‘rebel’ of course, but it was interesting to witness the peer group pressure faced by participants who decided to ‘have a laugh/take the piss’ – call it what you will. Like I said, there are no hard and fast rules, other than that the object had to fit in the space provided within the cabinet.
I remember one particular young man who spoke out loud his intention to leave a 10 pence piece in exchange for a vase that caught his eye. He told his friend: ‘My Mum would like that and it’s Mother’s Day on Sunday – that’s a good, cheap present.’ He was overheard and observed by a group of people interacting with the objects in the cabinet as he began to make the exchange. They were quick to voice their disapproval – ‘you can’t do that’- ‘show some respect’ – ‘cheapskate’ and so on. I can’t remember exactly how much he left in the end, but it was way and above 10 pence. It was interesting in itself to me that money started to creep in as an object for exchange. I was never over enamoured with £s and pence being introduced, but I decided at the outset that I wasn’t going to police what went in and out of the cabinet.
Things aren’t always what they seem, of course – quieter, more subtle exchanges have taken place. Many on the surface, have appeared quite straightforward and uncluttered by any sort of narrative. But dig deeper and it often transpired that an object left in the cabinet was in fact, highly emotionally charged. A real diamond bracelet was left behind on the first launch night of 10×10, for example. It was an exchange that might have gone unnoticed had the person who left it not written in the ledger book I always invite people to write in, should they want to. In the event, this message was left: ‘This bracelet was given to me by …. perhaps one day I will tell the tale …’
It’s a classic example of the concept around value and worth: genuine diamonds and their actual monetary value, versus the emotional worthless-ness of the bracelet to this particular person at this particular point in time. In contrast, a seemingly ‘worthless’ object in the shape of a small candle stub was left in the cabinet. It was exchanged for a pristine new candle by an international student on a tight financial budget. He told me he used candlelight in his bedsit room in order to save on electricity costs – a practical, pragmatic exchange.
Friday 10th October 2008 as I said, was the date I first launched 10×10. I had no idea when I did so, how things would turn out. There are many accounts (both oral and written) of what specific objects have meant/mean to specific people along the way. As well as the actual objects that people have brought along, it’s the narrative behind them that has also been a real source of fascination for me. I’m looking forward to fully documenting the stories associated with a decade of 10×10 in the future. But for now, on the 10th anniversary of starting 10×10, I’m pleased to feel well enough to at least acknowledge the date – 10/10 from 10am – 10pm – a decade ago, when my twin sons were 10 and my Nana reached the grand age of 100 years.
The Duck, a production by Autact Theatre Company, is a remarkable play, and, going to see it at the Stroud Theatre Festival last week, felt like a significant cultural moment.
Playwright, Rhiannon Lloyd-Williams is a late diagnosed autistic woman, and she forms part of what has been termed the ‘lost generation’ – I count myself among their number. Our diagnosis’ have been delayed into adulthood through cultural ignorance about autism as anything other than a series of stereotypes which exclude us. I won’t list them here, but suffice to say that males, savants, and geeks have dominated the cultural landscape (through no fault of their own, I might add).
Before continuing I want to state that this review is not the place to detail issues of gender identity within our community (which have also fallen under the radar). This play is not about women, it’s about one woman.
The play opens at the moment of recognition. I’m a duck! The duck in question is a metaphor for autism, and for 50 spellbinding minutes the audience is immersed in the thought processes of an autistic mind. For some of us (autistics) this is familiar territory and we can insert our own detail and nuance into the narrative. For non-autistic audiences this is instructive, in the best sense of the word. The play is not didactic, and the learning arrives through the offer of empathy – Lloyd-William’s brilliance is that she enables the non-autistic person to inhabit her mind, to loan it (if you will) for a brief yet vivid moment.
This is a one woman play, and actress, Lucy Theobald, gives a quite extraordinary performance. Coached by Lloyd-Williams herself, there is a sense in which she acts as her avatar. Theobald is her physical stand-in, complete with ‘stims’ (the gestures we often rely on to regulate emotion and sensation), but also allows the playwright the necessary distance to write from the gut. There are no punches held here.
As the diagnosis unfurls we are treated to the rawness of a lifetime of alienation which is unknown in origin. The torture of autism as a condition not yet revealed is really in the not knowing, which provides a vacuum for self-blame to be sealed in as tightly as superglue. My own experience is that unlocking this knowledge is redemptive. It was never autism that troubled me. I now understand that my difference is simply another way of being human. Not all autistics will share my sentiments but we can unite on the core message of this play.
I sat and squirmed as the labels which had been conferred on our heroine in the place of ‘duckness’ were rolled out in a devastating sequence. My own label was ‘naughty’. My poor parents were not to blame. They weren’t to know why I ‘disobeyed’ them royally – and did the opposite of everything they asked me to – and to their great credit they still found a way to love me. Such labelling and misunderstanding of our behaviours can be immensely damaging and even threaten our emotional survival. Our heroine makes a passionate plea to peel back the labels in order to understand and accept us.
My favourite passages of this one act play are when Lucy Theobald revs up the theatrical encounter, breaking the forth wall. Autistics are supposed to struggle with communication – and so we do at times, especially when asked to do so in conventional manner. Lloyd Williams breaks this assumption with the sheer articulacy of her writing, Jo Loyn’s direction of Theobald to engage us with eye contact and pointing underlines the point; and so the table-turning begins! Audience members are questioned (rhetorically), and drawn in to the heart of the action. We’re both inside her head and onlookers – I honestly don’t know how the author did this.
In many ways this is a confrontational work, but the beauty of the writing is that the voice is gentle and the audience is held. I like to be in two places at once. I’m prone to wriggling in my chair and casting my eyes about the room. I am also fond of observing faces and was treated to a section of the front row, which curved around almost facing me (albeit from some small but helpful distance, as I sat at the very end of the middle row by the door). I saw three things; wonder, care, and compassion. I might have glimpsed discomfort (but it was fleeting and productive, I felt).
What you want in a production like this is to feel safe while being challenged, and it’s a fine balance to achieve; so it’s all the more impressive to find it so deftly handled in a debut play from an emerging writer.
What I saw on those faces, now embossed in my minds eye, were the flashes and flickers of shifting emotions as Theobald dealt out the play’s denouement. A twist autistics will be familiar with (but no less thrilled by) and which will leave unsuspecting non-autistics gasping. No spoilers from me.
I am reminded of my own debut speech as an ‘out’ autistic person in which I declared myself a person in translation. My audience feedback was that I had changed perception – that they would never think in quite the same way again.
This is what I think the incredibly talented Rhi Lloyd Williams has achieved with The Duck – a paradigm shift. As a blogger on autism (at Autism and Expectations) she is immensely popular and widely read on a global scale because she has a rare capacity to straddle neurologies with writing that is also beautiful. She is also a poet and a performer.
As an autistic person who (disclaimer) is also a friend, my one wish for the play (in the moment) was for the author to act the part. I quickly saw why for many practical reasons this wouldn’t work. The remove, in working with an actress rather than making this a performative piece for the author, reveals itself as the production’s strength. Theobald’s embodiment of Lloyd William’s words is an extended act of empathy, as I suggest at the top of this piece. She leads the audience in a parallel act.
This is not the usual autism shtick so many autistic people have come to dread, which only serves to feed unhelpful stereotypes. We’re tired of Rainman and The Curious Incident of the Dog in the Nighttime. This is something wholly new. An authentic voice has emerged, and it’s my fervent wish that The Duck can be seen and heard in many venues across the land.
The Arts Council England funded Museum for Object Research and WEBworks collaborative project, NUNO (Neither Use Nor Ornament), is also proud to count Rhiannon Lloyd Williams among our WEBworks creatives as Poet in Residence for the project.
At the Museum for Object Research we love to support related work and events. This fascinating exhibition opens 10th September in Sheffield at the Chapel Walk Gallery! It includes contributions by two of our MfOR project artists Dave Edwards and Sonia Boué – indeed creator and curator of the exhibition is Dave Edwards himself.
We’ll keep you updated as more information about this exciting show comes in.
The Museum for Object Research & WEBworks will be presenting a new project in the spring of 2019 entitled, Neither Use Nor Ornament, in collaboration with the OVADA Gallery in Oxford.
Neither Use Nor Ornament comprises 14 artists working across neurological boundaries
Think you know about objects? Think you understand people? Think you know about Art?
Join us for a series of creative provocations including:
Neither Use Nor Ornament is the outcome of artist Sonia Boué’s Arts Council England funded research on how to be an autistic project lead and bring two distinct professional networks together; one network predates her autism diagnosis and the other was formed in response to her findings.
The result is an inclusive collaboration at the heart of which will be an exhibition focusing on the use of objects in 8 creative practices.
6 autistic creatives will present a supporting programme of events to run concurrently.
Neither Use Nor Ornament as a term of disparagement will be subverted.
This project is Arts Council England funded and seeks to redress an imbalance of perception and assumptions about autistic people. Here you will encounter autistics as creative instigators, organisers, and equals among our non-autistic peers on the project.
We are open for business again! Arts Council England have awarded The Museum for Object Research funding for an ambitious project bringing together findings from our R&D (research & development) phase!!
This means that our Artists will exhibit their work in realtime at the OVADA gallery space in March – April 2019. We will finally bring our blog to life!
At the beginning of R&D this outcome was our main focus. My research into working as an autistic professional was to facilitate leading on this outcome.
But if the initial version of our project design was a charm bracelet, the model we set out with at the start of R&D was a weighty chain, bulging with sharp edged bling, doomed to snag the very fabric of our plans. The charms looked good but were heavy with disabling ‘neurotypical’ expectations and we had to start from scratch on our project design. The learning curve on creating an autistically sound project was hard won but so worth it.
What developed (quite unexpectedly) was a project within a project. Through the autistic professional development side of my work I discovered a great need for support and opportunity within my community. WEBworks – was formed.
WEBworks redresses the balance of the project. Alongside the Museum exhibition we will now run a programme of events showcasing our autistic WEBworks artists/ creative partners. Information about WEBworks creatives’ projects will be added to this site ASAP – so do watch this space.
In effect, we will bring together two networks and level the playing field.
This project will also turn the seams inside out on my practice as I bring it all together in collaboration with artists and arts professionals across neurotypes. It’s a huge honour to receive public funding for this work and I intend to live up to it.
It’s also a challenge – but there is no doubt that each artist will produce a compelling work of beauty and excellence (this is why we have our funding!) My job is to make our offer to audiences gel. I want to enrich the cultural landscape artistically and challenge perception at the same time. No biggie!
Lucky for me I have a brilliant crew and an Arts Council approved ship. From bling to vessel we’ve come a long way – I’d love it if you could join us on this journey. So please do subscribe to our blog and follow our progress. We will blog and upload new content as we go along, and we’ll make our final works accessible on this website too (if you can’t join us in ‘realtime’).
So it’s a massive thank you, Arts Council England, for supporting and approving this project and a special thanks to @an_blogs for originally hosting The Museum for Object Research blog and being such a brilliant inclusive platform for artists!
Network ableism is an under explored topic. Sonia Boué has written a new blog post about autistic artists and the problems of networking in neurotypical systems. Encountering ableism in the Arts Council funding system she seeks to uncover serious inequities in the application process. First published on The Other Side.
My name is Sonia Boué and I’m an autistic artist. I’ve had a lot of luck in my career lately – which has largely come about using my own autistic methods and working with two truly wonderful mentors. On the face of it I look pretty networked in, but most of my opportunities have come from sharing my work and ideas online. At the end of each project I have to start from scratch, and I have no idea how to ‘use my contacts’ or network neurotypically. The sheer scale of the social labour involved in networking neurotypically is beyond me. This is why I have created a new kind of network called WEBworks, which is autistic in conception and in all it’s various manifestations. It’s for autistic artists and has a focus on professional development and creating access to opportunity. It’s a small pilot project – manageable and yet ambitious. It’s about empowering us all to become more visible and gain parity in the arts.
People are probably attracted to my work because of the intense autistic focus I am able to give to it – my attention is directed at what I do and not who I know.
So it’s been a jolt, and a hugely painful experience to be told by someone from Arts Council England at a recent conference (in a room full of professionals) to just “get networked in.”
Invisible disability is a box you can tick on a funding form to indicate who might benefit from your project, but it remains invisible in terms of just who might be present in a room full of professional people all grappling with the diminishing funding pot in the arts.
Autistic people are invisible as players. We’re so invisible that I’ve unearthed a major inequity in the funding requirements for those like me who aspire to be players. You see, I need big funding for my project, which includes support for WEBworks. Under present funding rules I need to prove why I can’t compete on a level playing field to match fund my project – and make the case that disabled people should not have to match fund their own access needs (and in my case that of my autistic colleagues). Perhaps no-one has thought of this, because no-one like me has ever applied to be a player?
I made a largely sound based video about this funding anomaly if you’d like to know more.
When I found myself quite by accident at an ACE funding surgery in my local area and brought up the possible problems with match funding for disabled people in general – I was told this would have to be proved. If you just have a foot missing we wouldn’t be convinced.
I let this ableist comment go at the time, but made a mental note – this person needs training – and I (and all my autistic colleagues) hold much of the the missing knowledge.
A missing foot (if you will call it thus) could imply almost any level of impact in a person’s life (invisible disability such as PTSD, chronic pain, fatigue…we just don’t know and shouldn’t assume) which could affect their ability to raise the signifiant sums of match funding required if they are also not networked in. We’re not talking peanuts, we’re talking resource rich networks from whom signifiant favours can be drawn into a project – for which you have to be resource rich yourself to earn them (in ways I, and those like me just can’t be).
I shouldn’t really be blogging. I have my Arts Council application to finish, but this is way too important not to bring to light.
You see something profoundly (if unwittingly) ableist just happened to me, so aspects of Arts Council England’s disabling funding system have literally fallen into place.
I tried to speak about access in the system at a recent arts conference where Arts Council representatives were present.
For context, I rarely go to arts conferences because I find them inaccessible and they often don’t tend to speak to my experience. I don’t generally go about with a large ‘A’ stuck to my forehead, or a, hey, I’m autistic! t-shirt on either. In fairness not many people knew my status (though I did make a point of telling everyone I spoke to). If I go again – as I now feel I must – I will break all my own sartorial rules and wear the t-shirt (with flashing lights if needs be).
But when I raised what I consider to be a very real problem of access I have myself encountered and blogged about on the a-n blog site, I was just not taken seriously by the Arts Council representative. In the time it’s taken me to cut and past this link I’ve received a comment from another artist. I know I was speaking for many.
“Yes, yes, YES! Keep going! I didn’t know there were diversity officers. Thank you for writing about this.”
Yet when I did speak up I was assured that everyone could have access to this particular service – just like that!
One person who heads a National Portfolio Organisation agreed. We have a regular meeting where you can talk to an Arts Council relationship manager (people who hold key information and can help with an application process) – as though I should perhaps have known about it.
Like the Alf Prøysen character in the illustration above, I immediately shrank to the size of a pepperpot! But something made me go on (I’m autistically stubborn and all about justice).
But you have to be networked in to have this access, I pointed out, without stopping to reflect that this might seem rude. I was contradicting someone who had (oh to hell with it) contradicted me. As I look back on it now – they were essentially making my point for me.
Well, get networked in! the Arts Council rep replied, as though this were the easiest (and most equitable) thing in the world. That appeared to be the end of my ‘non-point’. I was to join the NPO groups’ monthly meetings, job done.
I felt the room close in on me. I had both humiliated myself and been silenced.
In the break that followed, there was no processing time. One kind person offered to send details of the NPO group meetings, and another told me they too had struggled to get access to a relationship manager.
Then darkness – a film presentation to end the day. An unexpected event. Tears rolled suddenly down my face. Have you noticed how obvious tear wiping can be – so much rustling and grabbing for tissues, and elbows wiggling as you surreptitiously dab at your eyes. I let them roll.
But why tears? People had been nice to me, and the moment had passed.
I cried because the film was just so beautiful. Broken lives were being made whole again through the arts. I cried because I had been disabled by taking a risk and speaking out. The profound silencing of autistic people is historic and deeply painful within each one of us.
I want to talk to all the regional directors of Arts Council England. I want to talk to thedirector. I would like to tell them about our struggle, and the bias of their systems.
I want them to know how art redeems every aspect of my life and keep me connected. That I and others like me have so much to give – that we can be players if the playing field is levelled. What’s more we bring authenticity to the table. Truth is that Arts Council need us as much as we need it.
I’m not networked in, I will probably never be so in a recognisably neurotypical way. I rely on people to ‘get’ me and meet me half way. What interests me is how to make the system open and fair.
I want people at the very top of the organisation I apply to funding for to know how hard it was for me to stay in the room at this conference. How hard I have to work to be present, and what it took for me to raise my voice. So here goes.
One of the presentations just goes on and on. Everyone in the room is loving it I think, but the stage lighting sends an never-ending series of blows across my retina. I’m sitting too close to the stage. And the voices won’t stop. So many voices.
I’m caught by surprise. This shouldn’t happen now – the conference is in its opening stages and I have all day to manage. I struggle to find a strategy or any kind of relief. I begin to wriggle in my chair conscious that I mustn’t do this too much or someone will notice. Surely it will stop soon I think, so I try to hang on. But no, it just carries on and on.
I dig into my bag for the the soft tangle brush I sometimes use to rub across my palms to regulate the build-up tension, but by now I’m honestly near screaming point – the option of screaming occurs to me but I fully understand this would break an unbreakable rule. I realise after the event that the voices were too loud – the mics were set at the wrong level for someone with my sensory issues sitting so close to the front of this theatre space – I receive information from the sound system which others can filter out. I’m desperate but rooted to my chair. The brush is as effective as a wet sponge. I dig it into my palms but it may as well be in my bag for all the good it does me. The voices just won’t stop – I close my eyes but not for long. Drawing attention to myself is the last thing I want to do. As the presentation draws to close I suddenly remember to pinch my skin under my sleeve and I step out of the storm.
The lighting shifts again and we’re brought back into a room I can regulate myself in more easily. I can appear ‘normal’. There is no visible sign of my distress or the energy it took for me to survive this level of unexpected sensory onslaught. I’ll know in future to sit at the back with easy access to an exit.
I want everyone at Arts Council England to know that telling anyone who begins a conversation by saying that they have struggled with access (in any context and for any reason) to get networked in, is simply not equitable. And I’m sorry, but for invisible disability it’s like telling a wheelchair user to grow a leg.
If you listen bottom up to authentic voices you’ll also discover why not everyone can just speak to a relationship manager.
It’s time for social currency (and who’s got it) to rise up the Arts Council diversity agenda.
An Arts Council award can be a profoundly life changing event in the professional life of an artist. This is what I want for all the artists who are involved in WEBworks.
In fact, I might just attach this blog post to my application. Why not – it sums up the need for my project perfectly.
Commissioned to make a short film response to MfOR, Naomi Morris has chosen to focus on the practice of project lead Sonia Boué. A lyrical and sensitive reading of her mentor’s practice Naomi shares her own insight into what it means to work with objects as language.
Naomi’s film will be used in a forthcoming series of workshops with the community of St Luke’s Church in Oxford, to illustrates object work in artistic practice. St Lukes is located in an area of social deprivation and Naomi’s work will help enable members of the community to engage with object work themselves, as assemblage and through the medium of film.
This film will also be shown at a “WEBs” programme screening at FILMOxford in 2019
Professional development and funding bid success as an autistic artist is a long road.
I’m back at the coalface of the Grantium portal, but this time I’m making a higher level funding bid for a complex socially engaged project very close to my heart.
Once more I feel I’m facing Everest. The step up feels immense as I gradually absorb the additional requirements and scrutiny that a higher level bid demands. Yet if I don’t go there how do I continue to develop as an artist and project lead?
But in going there I am uncovering (all over again) exactly how biased against autistic artists this application process is.
I learned (with inordinate difficulty) to write a £15,000 and under bid. I blogged and made a video documenting my process. I understand – this is public money – that it’s not easy. I understand that in asking for more public funds it will be harder.
I just want to say how very much more difficult it is when you have a hidden disability like autism because many micro tasks are involved each one representing a barrier (I’m not kidding). Our challenge with executive function can be great – it can also oscillate, meaning there will be times when we can manage more or less. One thing is certain, as tasks accumulate we become overloaded and overwhelmed. Recovery from overwhelm takes time and of course the tasks involved don’t go away. We are inordinately slowed down and may lose the will to go on.
I felt that yesterday. But I know I won’t give up because my practice is driven by an inner compulsion – I won’t be beaten but my efforts are extra (not ordinary) and this should be recognised. It all takes it’s toll – including falling over and getting a black eye.
Yesterday, in supporting another autistic artist I happened on a brilliant talk by a relationship manager about funding bids. A serendipitous but random event, which made me aware for the first time of the mysterious ways of this vital support for artists. I’ve spoken to a relationship manager on the phone (so helpful to my first bid), but I have never met one before – they’ve seemed progressively more elusive and shadowy figures (the cuts!) who were once available but are now not so much. Some NT artists/ arts professionals I know talk about them as friends and contacts but this has always seemed foreign to me as so many (seemingly random) examples of social relatedness in the workplace do. The social labour involved in such relatedness is often beyond me. These are the hidden codes.
And this is the point – as an autistic person I can’t relate to shadowy figures, to people obscured in far flung regional offices, who may well be part time and/or work in multiple locations. People whom, from Oxford say, you may need to get to Brighton to see, or catch them on the phone on a Tuesday, or pre-arrange a Skype call with.
I get vertigo just thinking about it. The organisation and planning involved in accessing such a ‘moving target’ represent a barrier. Arts Council England, you are giving me more micro tasks.
At the meeting I see before me a dynamic young woman and I understand for the first time that there are people out there who can help me, really help me. People who I can talk to about my project, really talk to. I ask for the diversity officer’s name. It’s thrown to me quickly mid talk and I write it down but of course, this was not the moment for contact details.
Arts Council used to list them on the website I’m told? But now they don’t because…the reason given was impossible to process and is obscure to me.
So now you have to ring up or write to get contact details. I sigh. I sigh one huge and heavy sigh. I feel a potential ramp falling away.
Arts Council England – you have a beautiful shiny section on your website about the creative case for diversity. I’ve seen your lovely video featuring wonderfully diverse voices. It makes me glad, but I am so very frustrated.
You do not list your relationship managers (with at the very least email contact details) up front on your website.
In failing to do so you give autistic and neurodivergent artists like me more challenge – you obscure for us a vital source of help. We may not be able to access the brilliant helpline you provide, we might just not be able to write that email asking for contact details – so much to say here about why not but I don’t have the time. I sat before the relationship officer, in this room of arts professionals thinking I want to train you. I want to be commissioned to write a report. This is only one tiny aspect of what’s wrong with the application process as it stands. SO much is taken for granted and works against us.
The main point here is essentially, and it is essential, that we may not pick up how important it is to access relationship managers, we may simply not clock them as a vital part of successful application processes because we can’t SEE them. For many of us seeing is vital to knowing.
Something so simple and so vital to many ND artists could be changed with a tweak.
I find it so very neurotypical to have a showcase list of relationship managers on the website with nice pictures and a paragraph or two about working for ACE. It’s quite lovely but the list is incomplete and there are no contact details.
You’re almost there Arts Council England – I urge you to go for it and give ND artists another route in to making contact with the people who – not only can they make a difference to your application – but with whom you can have an ongoing relationship (yes – radical news for some of us) about your professional development.
Alleluia – I finally got it. My next step is to track down the diversity officer I so want to talk to about all of this and so much more.
I grew up loving words and their meanings. From a very early age they gave me the means to quantify and describe an often puzzling world that spun around me. Sometimes this was in an unchosen silence, unable to share when I couldn’t cope with the outside world, an internal pleasure just for myself. Being synaesthetic I often found these descriptors were pale shadows of reality or just didn’t exist so I invented my own and appropriated others. Also a child I was continually asking questions about the meanings of things and secretly building this fragmentary detail into my own bigger picture, a ‘world’ taxonomy that would come in very useful later in life. To me as a child, language meant life.
I’m not saying it was all plain sailing as my ability with language and word lead to issues at school. Whilst I could answer questions quite eloquently when able, my written work was poor and I often often opted for words I could simply spell rather than those I really needed. I was often called stupid or I would hear the word ‘lazy’ used. (actually I’m just dyslexic and autistic and it was never picked up.) I sought solace in nature and especially geology, becoming a palaeontologist – stones don’t lie or let you down.
One day aged 11, my teacher tore up one of my pictures up in front of the class because I spelt my name wrong. What cut me even more than the loss of a single image was the fact that he said ‘I would never amount to anything’. That day my dignity and dream of becoming an artist died. I learnt that these precious things called words could hurt and that ‘sticks and stones may break your bones but words will never harm you’ was a complete lie.
It also caused trouble in the playground because as a teacher had humiliated me ‘with words’ it had seemed to give permission to my fellow peers to do the same and some did with glee. What I really hated though was that I felt misrepresented, that they hadn’t given me a chance to prove myself or my ‘inner me’ that I soon learnt to keep hidden. I knew I was different and so did they. Oh and by the way I don’t have a normal person inside me longing to escape my inner me is 101% autistic.
Language can be either heaven or hell, and for people who don’t seem to fit a society or are different, it may become a clear and present danger. If something is said again and again and again even though it’s untrue or a stereotype or a misrepresentation it soon may become an ‘apparent truth’. Words can be used as seeds to engender hope within a single person or as a seed of desecration, repression and othering in preparation for the loss of generation. History has shown us where relatively simple words of hate can lead. One powerful group in a society deeming ‘others not human’ and ‘useless’ thru the media or policy. We should remember this every January on Holocaust Memorial Day for example.
Mostly I don’t really have an issue with the word autism but I do have a problem with the way it’s often used. Until we change the traditionally used wording towards autistic people to the preferred language used by autistic people, the stigma and othering I feel will not stop. I don’t ‘live with autism’ for a start, I actually live with my wife and two cats. I didn’t ‘acquire autism’, it’s not a handbag or a pair of shoes. I don’t ‘suffer from autism’, I just have to suffer the attitudes of people who seek to misrepresent me or plainly don’t understand the harm they cause us. I do however live with and suffer from PTSD caused by poor attitudes towards me as an autistic person.
It’s very easy to seem comic, flippant and literal about these things but language engenders attitudes and attitudes engender the way you accept or reject people. I’m not a person ‘with autism’ I’m an autistic person. It’s not separate from me because that suggests that I can lose it, cure it or rid myself of it. What’s worse is it implies that others can do this to me. language Imposed on any other minority would be seen as unacceptable so why does it seem such a ‘free for all, towards autistic people?
I personally feel that that the language used towards us should be driven by autistic people, ‘our language our narrative’. I also feel you can tell the attitude of an organisational or individual towards autistic people by the language they seem to use. If an autism organisation doesn’t listen to the voice of autistic people and carries on using language that we may find offensive that simply says ‘we don’t care about your opinion’. Do we need organisations ostensibly for autistic people who don’t care about our opinion?
I also really dislike the way some come back at autistic people who choose to use identity first language with a ‘cancer’ argument. I won’t say much here other than it’s not acceptable and is I feel disrespectful to all concerned. We are talking two completely separate things here. The analogy is incoherent and again shows a lack of understanding on behalf of the people who use it.
I feel there is also a lot of misunderstanding around the use of the term neurodiversity and it seems to be becoming a bit of a buzzword without people really understanding it’s taxonomy. Neurodiversity encompasses all of us like biodiversity does the life around us on this planet.
A single animal cannot be described as being biodiverse, a cat cannot be everything at once but it is part of biodiversity. likewise a single person cannot be neurodiverse as they can’t be both neurotypical and neurodivergent at the same time. However a group of people can be neurodiverse just as a specific population of flaura and fauna can be biodiverse.
People often ask me what’s the biggest change we can make towards autism acceptance or understanding and I say it is modifying the language that people use towards us. And after that they need to except that they don’t understand what goes on in ‘our heads’ and listen to what we need not what they project on us, double empathy. Both these go hand in hand. If an organisation refuses to listen to autistic people and won’t change their language or perceived attitude then they’re not an ally, in fact they’re part of the problem. Conversation between all sides is so important as we won’t obtain autistic ‘emancipation’ without all agreeing but that needs a common language.
I don’t need modifying to be a part of our society rather than apart from society. I just need accepting the way I am, something that seems incredibly hard for some people to get their head around. Society should be made ‘fit for us’ not for us to have to ‘fit in’ with society’s wishes or traditional stereotypes and misinterpretations. Society really should except and embrace difference, along with the self-descriptive language chosen by any minority’s concerned.
Yes we are all different, an incredibly positive and enriching thing and for me confirms the fact we are all just simply human.
I open the jiffy bag. Sellotaped inside clear cellophane, a man stares out in the manner of Lord Kitchener, demanding allegiance . Distinctive and dashing, with a high collar, his assured masculine confidence exudes Victorian ascendency. He represents a deliberate nod to a bygone age of the ‘gentleman’. Somehow he just about gets away with the moustache. It’s way before the Village People undermined that particular visual iconography.
Now I do remember this little package so I’m not imagining – but in today’s world everything about it seems from another time; a time even before my own boyhood. A monotone lithographic portrait set into a two colour print of turquoise and dingy royal blue . It feels a decade earlier; early fifties. I’m led to believe that this pack actually does come from the fifties, but still, I remember the design well into the sixties for sure. Perhaps they just never got round to changing the artwork; I guess brand identity evolved more slowly in those days. Maybe my dad had acquired old stock, who knows. Whatever the reason, this is the pack I recall from my childhood. The pack I first saw in our bathroom cabinet. The cabinet where adult things were stored.
I have hunted down this distant treasure on ebay in order to confront my crime. The crime of a child is typically transparent. There was no cunning in my actions, although later there was calculated deceit in my choice of where to conceal the stash. Mine was indeed more a compunction than a crime and is, to this day, without obvious motive. The victim was my father, though I’m not sure he was ever aware of my transgression. He is now in his nineties and, writing this, I am wondering if I will spill the beans. But I’m not convinced of his capacity to do much with the confession. It would probably seem like an inane act to him. Would he smile wryly or think… hmm that just about sums up my unfathomable son.
The blades seem not quite as perfect today as they did then. Smaller now I’m an adult; really quite small. The miniature Victorian gentleman’s stare is knowingly aloof, but not forgiving. He dares me to open the packet again – which of course I must.
‘Time to confess’, says the small voice. ‘J’acuse, monsieur j’accuse!’ Suddenly I feel Gillette Man is French.
The bathroom cabinet was a lock-up of secrets; a place where pristine, clinical things were kept. None more so than the multipacks of Blue Gillette Blades. I don’t recall the exact moment I decided to steal the first box, but I do quite clearly remember how it felt to open the packet and reveal the treasure inside. It was something to do with the waxy paper and the precision. These were objects that had no purpose in my world; no practical gain was to be had in taking them. It was the thrill of the new. The rush that comes with transgression. I was coveting a wafer of sharp silver in its delicious double wrap packaging. Mesmerised by the theatrical reveal.
Once laid bare, there isn’t much you can do with a razor blade if you want to maintain its perfection. Make a single cut and it’s virginity is lost. So I always packed them back up with care. Exquisite gifts from the mirrored cabinet. Folding the paper wings into their embrace of steel and sliding each blade back into the box.
Now I had moved beyond coveting, they were potential evidence. Evidence of my crime; smeared with my DNA. Even though I knew nothing of DNA at the time, my instincts were good. Like stolen goods they were hot. Very cool, but too hot to have around. Too incriminating. Yet I didn’t want to give them back.
Their eventual hiding place was arrived at via a process of elimination. My bedroom was small in those days with just enough room for a single bed and a pull down cabinet where I attempted my homework. Mother did the general housework and would be sure to find any secret spot, as nothing was deemed private at that young age. Obviously I couldn’t use my parent’s room so that only left the slightly larger one my older sister occupied in our three bedroom semi. If I was to use this as my treasure island I had to find a place neither of them would look.
They may have had an early version of carpet grippers in those days, but I recall ours being held by crudely fashioned flat headed tacks that kept the carpet in place. These were easily lifted, so I decided upon the classic hiding spot. Not exactly under the floorboards but under the carpet at least. Lift an edge, slide the blades in, and push the tack back into place with a furtive thumb.
Time passed. On finding after a while that there was no comment, no ramifications, no thunderous accusation, the mind of this criminal longed for further excitement. Was repeating the act merely satisfying the same craving, or had I a longing to be found out? I can’t answer that but, regardless, my plundering of the bathroom cabinet became ever more frequent and greedy. How many blades did father think he was using? Surely he would notice at some point? If he did he never said and thankfully he never grew a beard. He must have continued to buy blades. I fed my habit and added to the hoard. It was like money in the bank.
At some point I must have grown tired of this. Perhaps the carpet began to undulate with the accumulation of blades I hid under it. No doubt I became interested in other things. As an adult I occasionally have pondered this odd behaviour. Admittedly it was only a petty crime, but I do wonder what Freud might have had to say about it. I also wonder what the new owners of my parent’s house thought when they lifted that old carpet years later.
As an adult I have, on occasion, looked for some reverberations in my later life that might provide a motive. The best I can come up with relates to computer graphics.
In the mid eighties I was a demonstrator for a video based computer graphics system, presenting to industry professionals at media shows and the like. The world was by and large unfamiliar with such technology. Almost without exception, the audience would be wowed by the ‘instant colour graduation’ routine.
‘So I click here’ (clicks on colour palette.. let’s say deep blue)
‘then I click here’ (white perhaps)
‘and then click here’ (oh I don’t know – something similar to the first colour)… and hey presto; a perfect, shimmering tonal graduation instantly appeared on screen. The kind that used to take ages to achieve using an emulsion, film based process (typically employed for graphic overlays of captions and other such tele related stuff).
That little trick now seems profoundly trite and uninteresting; anyone can do it in photoshop with just a quick tutorial, but in those days it was amazing. It amazed me too. I felt like an explorer who had journeyed to distant lands and brought back something exotic and forbidden to bamboozle and astound his tribe. In the trade show context, I was a medicine man rocking up with my mysterious Pandora’s box of dodgy elixirs.
The look of computer graphics attracted me in the early days for precisely this reason. It was new, it was shiny and could achieve the immaculate in a way which denied any trace of the human hand. It was alchemic. And there, I feel, is the parallel. I was fundamentally drawn to the razor blades and their perfect packaging in the same way as I was drawn to this smooth computer generated graduation.
In the quest to make things look ‘realistic’ computers are now ever more required to produce images which appear distressed and imprecise, some might say subtler, but in the early days of CGI that effortless perfection represented the shock of the new. The birth of a flawless way of making things.
If you have grown up with computer technology you might not understand this epiphany, but if you are a tad older, and interested in the appearance of things, you will recall a world where such perfection was hard won. The razor blades to me as a boy were that perfection made real; to all intents and purposes an actual trove of treasure, beyond function; beauty for its own sake.
In retrospect, I see that the blades represent the achievement of an old way of manufacturing. Those processes associated with factories and smoke, ‘heavy industry’ and the skill of the hand. The astounding new technology of all things computer generated has assumed this mantle and headed off apace, but what hasn’t evolved so rapidly is ‘us’ and our emotional being.
Here in the present, although the humble razor blade might seem mundane to some, to me it remains as magical as ever it was because of the associations I bestow it from my past. I’m thinking that the on-screen colour graduation, though less tangible and admittedly now bland at first glance, might, in time, prove to be similarly profound. Something to meditate on – quite literally perhaps.
Listening to the radio this morning I heard a phrase ‘from hands to head to heart’. It was being used to describe societal evolution. First we made things with our hands and then we refined them via our intellect. That’s the ‘head’ bit. It is generally accepted that in the future machines will perform ever more of our manual and repetitive tasks for us. Though robots may indeed take over our practical functions, we hold as unique our sense of what it is to be human; to care; to genuinely empathise. Our ‘heart’, so the theory goes, is the bit that can’t be replicated or replaced by androids.
Holding on to our uniqueness may be a deceit, but for now I’m going with that as an idea. Let the razor blades stay in their box and let me imagine them. In that way they transcend their intended function and become the hero’s of my personal narrative.
Photograph of an informal performance at Modern Art Oxford’s gallery spaces in response to the Hannah Ryggen exhibition Woven Histories, by WEBworks artist Naomi Morris. Session facilitated by MAO Galley Manager, Kay Sentence. Continue reading →
My Autistic Professional Template also formed the basis for Sonia Boué’s, Out of the Ashes talk for Oxford University TORCH.
I am a professional autistic artist and creative project lead. I form part of what has been termed the “lost generation” – diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional I need accommodations to access the same level of opportunity as that of my peers.
The following is the result of a six month research and development project, funded by Arts Council England. The aim of this research has been to create enabling conditions for my project work, and in particular in my role as lead artist, because there are no blueprints currently in existence for this kind of work.
My thoughts during this period have often been guided by Brent White, Director and researcher on autistic leadership, at the ACAT: Ala Costa Adult Transition Program, on the Ed Robert Campus at Berkeley.
Professional mentoring has been provided by Miranda Millward, and creative mentoring by Sarah Mossop.
Freelance arts project work is often by nature informal, characterised by highly individual working practices, and mainly without clear structures. Autistic artists need Arts Council funding to create self-led projects from which we can build sustainable artistic practices in line with our peers. Yet without adjustments for the challenges involved we can quickly become disabled in the freelance melee. Navigating this world requires a well constructed set of practical measures.
There is a great variety in how we present. I therefore make no general claims for my template – it is by nature ‘me’ shaped – but I anticipate that my experiences will resonate greatly with many autistic freelance creatives and help inform the arts organisations who hold our employment and opportunity in their power. Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards, but the barriers to our inclusion can be overwhelming.
I have made it through this funding barrier, and yet the early to mid term circumstances of my project proved disabling. Access was also impeded by factors beyond my control which were unrelated to my autism, and the emerging model for my work includes experienced and trusted neurotypical mentors to identify and troubleshoot the elements of my projects that autistic navigation systems can’t reach.
My project clearly signals the need for rights based approaches rather than relying on informal knowledge and conversation to gain access when working in close collaboration across neurological type and attempting to lead a team in a freelance context.
Autism as culture
Autism is both a neurological and cultural difference, and the disablement of autistic people at work is an ongoing civil rights issue leading to inequality and an increased risk of mental health problems. We are a small minority with a unique social difference. We live within a dominant culture, which runs almost exclusively on social aptitude of one kind. This culture is pervasive and disabling to us in ways not easily recognised or understood by the majority.
But those who work with us don’t necessarily have to understand us on an individual basis. They don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed the demand to share personal information about ourselves to gain access is an issue in
In an ideal world our needs should be accepted without question and active measures taken but in reality they are mired in social complexities. Ours is a pioneering generation tasked with beating a path for ourselves and future cohorts of autistic professionals.
These are rights based issues, which we are currently forced to navigate via the very social codes which disable us.
Deconstructing the power imbalance
“I should not be subjected to this stress on my own project.”2
Aspects of my experience stand as a cautionary tale. The earliest iteration of my project began to flounder on the question of inclusion despite this being it’s primary goal.
The bare bones of my situation were that I had agreed to work collaboratively on the understanding that the project would be shaped around my needs but this proved impossible in practice. I had lent a creative idea and my ‘neurodivergence’ was the rationale for funding but nonetheless my needs were submerged. This rendered the original project proposal unworkable.
As an autistic person I must adapt myself constantly to engage with the ‘neurotypical’ world. In research terms my question became – what happens when I stop this process of constant adaption and ask for the accommodations I need to work accessibly so that I am not disabled in this situation?
In practice this did not work out – quite the contrary – and my energies continued to be painfully directed toward my own adaptation.
In general terms we need a wider understanding that effective inclusion is a two way street of adaptation. Accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us. The level of adaptation this implies will depend on how close the working relationship needs to be and the kind of access required. While we may seem to speak the same language our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice. This can be because our difference is not convenient to others.
There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the double empathy bind (Damian Milton)3.
Project leadership and design
“None of this is not stressful for me.”
To lead and take responsibility for funded projects I need to work in ways which minimise anxiety because it can become disabling. High standards of professional practice can be extremely helpful in this respect.
But my project had placed too much reliance on one key point of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.
I invested a disproportionate amount time in unpicking differences in collaborative working styles and finding ways to communicate my needs. But the continuous struggle to negotiate working terms and chase schedules was negative and eroding. My project appeared to be built on quicksand.
I attempted to modify the project design and consulted my mentors, but in access terms, my ramp was broken and I was disabled on my own project.This experience has enabled me to identify my need for more direct access routes and a hands on approach.
My highly logical thinking style, my ability to see priorities clearly and my intuitive grasp of sequence and method are also key factors in considering accessible project design. Not being able to work towards outcomes logically and intuitively at my own pace stalls my brain.
Identifying that I am a global and immersive thinker means I can now design my projects around my strengths. Holding their shape in mind as I work on each part enables me to drive priorities and achieve the exacting standards I require.
Any project in which I play a lead role will need to accommodate this profile and be shaped around my needs. In order to remain functional as a project lead I need my collaborators to work around me – and not vice versa.
This was the key to my disablement during the early to mid term of the project.
In addition there was a significant neurological imbalance on the project as I was a lone visible autistic. When my project hit serious access difficulties I realised that I needed to recruit my own ND/autistic team to create a more level playing field.
“Its not that I don’t want to be friendly, its just that I get exhausted.”
Prevailing social norms and expectations come at no additional cost to the wellbeing of the general population. But when we adapt ourselves and ‘mask’ autism to gain entry into the workplace we do so at great cost to ourselves.
In the informal freelance arts sector I have found that there can be a high reliance on ‘neurotypical’ friendship codes and relationships. This can block access on many levels for autistics who can’t mask, and be ultimately disabling for those who can. Our inclusion can depend on pleasing others which can be difficult (if not impossible) to sustain and can be classed as social or emotional labour. Autistic access needs can be socially misunderstood due to the emotional needs of others.
But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work. When this became overwhelming for me I found that establishing rules for contact helped manage this and keep me organised. I was able to filter interactions by limiting contact time and channelling communications to one email address.
These are effective strategies to carry forward into future project work.
As a more general point, when considering social risks in addition to potential ‘social overload’, for autistic artists there may be a particular difficulty in gauging digital vs realtime contacts (where it is easier for potential co-workers to misrepresent themselves). This is pertinent as we can tend to rely on digital online networking. Properly testing relationships is a further barrier for us to overcome.
Autistic flow vs timetabling and task based work
“I feel cut up in pieces and dismissed.”
I now understand why all my primary school workbooks are empty and peppered with phrases like – good start Sonia, but where’s the rest of your work!
I experience autistic flow as a very specific state achieved by working with rather than against my natural thinking styles. This flow is continuous, often prolonged, and can involve a related state of hyper-focus. The degree of focus which can be achieved is (I believe) atypical.
A potential problem with this in working across neurologies is that there can be an unequal focus of attention on a shared piece of work. Unless sufficient catch up time is earmarked, I’ve found it can be hard for colleagues to keep up with the fruits of flow. I would not in future embark on a significant piece of close work where this focus is not well matched or without a suitable catch up system securely in place.
Flow is what allows me to develop my thinking on a topic or a series of related concepts, it is efficient and necessary for me to stay organised and productive.
During my research I found the demand for me to accommodate working practices which relied on timetabling work (to someone else’s schedule and priorities), and task based approaches (to work through and share core project developments) stalled communication. It also undermined my ability to think and I begin to lose functional capacity.
This learning allows me to factor flow into future project designs.
Mental Health and training.
“I’m at screaming point.”
I soon felt like a canary in a cage. I thought often about how miners used to carry these birds with them into mine shafts and tunnels to detect poisonous gases. If the canary keeled over they knew to get out.
When conditions become disabling we can easily become pathologised. My anxiety became acute. I considered seeking mental health advice when what I needed was to take a break from collaborative work and redesign my project along autistically accessible lines.
My project began with good intentions but relied on an informal knowledge of autism, and in addition had encountered an unexpected and decisive roadblock which was not autism related.
In future I would build externally sourced autistic-led training into project designs for close colleagues. This would both help support my access needs and take some of the pressure off personal explanations. The risk of colleagues misunderstanding autism can be great and can come at a very high personal cost.
I would build mentorship in at the planning stages of any future collaborative work.
Self translation, masking and trauma.
“Every communication is an act of translation.”
Being autistic in a ‘neurotypical’ world demands profound acts of self translation which, although mainly conditioned, are carried out with apprehension and painstaking care. We must often mask or otherwise camouflage our autistic selves to gain social acceptance and access to work. But this is exhausting and destructive in the long term.
It is genuinely hard for colleagues to understand this because autism can present invisibly. During the writing of my Arts Council bid it had been necessary to build up and prioritise my autistic template against a tendency for it to become submerged. With hindsight I can see that these were the origins of what would become a constant struggle.
It was deeply distressing to me to find myself invisible at key moments on the very project which was intended to support my needs. I turned to the poetic form. Publishing on my blog has been a constructive means to articulate my struggle and regain a sense of balance. This has been a highly successful strategy providing an effective means to communicate about autism to a wider audience.
But the circumstances of my project had become traumatic and aversive to me.
Autistic artists as a group have been earmarked as a funding priority by bodies like the Arts Council for good reason. I found that our struggle can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs however lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.
“I feel the need to languish in autistic spaces.”
Taking time away from problematic areas of the project was greatly beneficial to my thinking as I needed to arrive at autistic solutions. My mentors helped me asses the difficulties encountered and encouraged new areas of development on the project.
Mentoring also provided me with the vital ‘neurotypical’ perspective with which to decode the situation before me, enabling me to process and navigate my way through it. I was thus more able to gauge which elements of my challenge might fall within the range of problems of translation across neurologies, and those which were other.
Blogging brought in autistic contacts and I began a networking initiative for autistic artists called WEBworks, which aims to offer support with professional development. This is an important outcome from my template work.
My project was originally designed to lead to future large scale and ambitious outcomes in prominent venues. But such spaces can be wholly inaccessible to autistics. Like Don Quijote tilting at windmills, I had been persuaded (by various forces) to lead the way to doors which were closed to me.
I took the reigns of my project and began the job of reshaping it along accessible lines. The result of all the hours spent analysing my project was a solid paper trail from which I have been able to retrace my steps and find my way again.
“I feel like saying sorry my autism is inconvenient, but that would be ridiculous.”
It is easy to talk inclusion but harder to act inclusively. With autism we face multiple challenges in demonstrating and articulating our needs as both cultural and biological in origin and expression.
Our needs may be considered hurtful, ‘antisocial’, and can be easily misconstrued and dismissed by the majority culture. Rights based approaches, education and training are (in my view) likely to be more constructive pathways to more successful inclusion than explanatory routes which can be derailed by the double empathy bind.
I have found that it is extremely inadvisable to rely on an informal understanding of autism and inclusion rights in a serious professional context where access is at stake. Reliance on informal arrangements can leave us vulnerable to disablement and mental health risk.
As I tipped the balance of my project towards accessibility I began to understand that truly effective access design may be almost indiscernible. The smartest design will be the kind that fits so well as to be virtually invisible. Designing projects around our unique neurological profiles would take us closer to this ideal of best fit accessibility.
To arrive at such best fit solutions the space to think and plan autistically is needed.
Elaborating access around more dominant or typical goals and assumptions risks ill-fitting and potentially counterproductive project designs. It also runs counter to the very identity politics which many late diagnosed autistics seek to embrace. We don’t wish to be enabled to be more ‘neurotypical’, a point which has particular resonance in creative practices.
My research suggests that issues of identity, accommodations, and project design are likely to be closely aligned – and that what we need as a group are most probably holistic designs for holistic thinkers. This understanding and related insights will be carried forward into my future projects and form the foundations of my mentoring and supportive network development with the WEBworks group.
I can now share my research and attempt to inform a much wider conversation about neurodiversity in the arts in the freelance sector.
2. Quotations under section headings are from my field notes.
3 On the ontological status of autism: the ‘double empathy problem’ Damian E.M. Milton, Pages 883-887 | Received 08 Jun 2012, Accepted 13 Jun 2012, Published online: 16 Aug 2012, Download citation http://dx.doi.org/10.1080/09687599.2012.710008
‘FlOb Holotype – The first piece of writing expressing the ideas of Flow Observatorium calling for change in the arts landscape – October 2015′ written by Jon Adams
I was born with a pencil in my hand, or at least that’s how it seemed, but recently I have been usurped by my wife who has joined the growing ranks of the ‘pencil colourists’. To watch her using & choosing the right pencil or pen, always in the ‘correct colour’, matched to the ‘correct white space’ is a delight and has been quite revealing. I’m not jealous other than of her burgeoning collection of colours, not in the slightest, because we both ‘make’ for diametrically different reasons. She chooses to colour as a form of self-guided therapy and as her creativity flows, her pain goes. It’s like watching someone lift a heavy overcoat from her shoulders, released on a summers day, as her brain is distracted, switching to a more calming & effective analgesic. She is living proof, along with many others, that ‘making’ is physically and mentally good for you, sometimes seen as inferior to some nobler calling. No, as the nominated artist in the house it’s not about fame or fortune or even making me ‘feel better’, it’s about simply an unswerving ‘compulsion’ to create.
As a young child, intently curious but solitary, without recall to the reference library of experience I’ve now built up, my saving graces were few; those pencils, Lego, stones or maps, plus the wonder of laying in the garden watching the stars move. I’ve always known I was different, from my earliest memories, alongside the bump on my thumb or faint indented marks on an eternally ink stained finger. I realised I needed a form of base line translation to accompany my perception as the world around me seemed too fast or too slow, with always that unchanging few degrees of untouchable 1% difference. Instead at school I soon learnt to be wary of people, they seem to be my ‘kryptonite’ and like the ‘love of making’ that has never changed.
Aged 6 I announced I was going to be an artist in response to one of those typically childhood ‘adult’ questionings; ‘what are you going to do if you grow up’. For me this wasn’t my (as yet undiagnosed) autistic logic talking but a more holistic, enveloping feeling that there was no other choice worth considering. Being an undiscovered dyslexic meant as soon as the 3Rs were involved I revealed an exploitable weakness to balance any ability I may have genetically acquired. I did have my pencils; they made me popular, drawing cartoons but paradoxically I always found difficulty with the ‘draw what you like’ scenarios. I found school very difficult after a certain point was reached; in the era of shifting educational dinosaurs there was no mention of any support for my daily observed ‘staidness’. Then in the final primary year, the headmaster chose my picture to go up on the hall wall. For me that was the long desired dream of acceptance, negating any differences I may accidentally show. Now I value that difference, but at 10 I desperately wanted to fit in. It was not to be, that precious picture was torn into pieces, dropped into the waste basket in parallel with “You can’t even spell your name you’ll never be anything”. I learnt to
keep quiet, filling the pockets of my proffered overcoat with gifted stones as evidences to weigh my future down. Now, with the benefit of hindsight and that library of experience I’ve collected, I know why I then became an ‘outsider’.
An accumulated history of its making, albeit hidden
Leaving school I never even entertained entering an art college to train as the artist I said I would be, or engage with other like-minded people other than occasionally through music. I knew I wasn’t stupid, opposite to what I was frequently told, but it was often this disconnection that reinforced earlier issues. My other lover was geology, accepting oneness with the unseen landscape – so that’s what I studied. I seemed unnaturally good with visualising or touching time, arranging layers of stratigraphy, ordering and systemising. On leaving after a brief dalliance with ideas of a PhD, disregarding accidentally what others seemed to see in me, I soon found myself that solitary ‘artist’s niche’ in geological illustration. This soon widened into science, archaeology or historical book illustration. Seemingly made for the role with an obsessive attention to detail or repetition plus an honesty for each subject – if it wasn’t meant to be there it wasn’t included. All the clues were there, set in stone, undecoded, waiting for a possible later revelation that I was Aspergers and neurodivergent.
Always finding illustration unsatisfactory, I started wondering why. For me it was in the detail, how the page was laid out, the faint draft pencil lines, inking in or at a push the final colouring that brought joy, but to everyone else this was unimportant or ignored. For them a final finished polished image without the bonus of a told journeyed story was king. Even though my name was there I often felt anonymous, for me it was all about the work as representation, an accumulated history of its making albeit hidden, constantly rerun in my mind.
Normal is just a setting on our dishwasher
Things changed inevitably, which as an aspie [Aspergers] is difficult, and it struck with becoming temporarily unemployed. It’s not that I wasn’t successful in what I was doing, quite the reverse as I had just been offered a contract with my own book. I had developed unconscious coping strategies for my dyslexia which involved not relying on letters but personal visits to discuss the design and images needed. This was to make sure I understood what they wanted from me so I wouldn’t slip up embarrassingly. It was all part of my ‘camouflage’ at the time and
unbeknownst to me vital for my autism. Although I chose this path I did find people hard to get to know and I wasn’t very good at self-promoting other than letting the images speak for themselves, so when I found a company who were happy with what I did I stuck with them. The flaw was not predicting the company would split into two and the staff I evolved the ‘different way of working’ with went one way and my book contract went the other. I couldn’t cope with building up relationships again due to my low self-confidence so I not so much gave up but stalled. It was one of those serendipitous moments which seemed bad at the time but was really just sending me on the better path.
There had been times in my life where I’ve almost realised that I see or experience the world very very differently, but I mistakenly assumed that other people ‘saw’ in the same way too. When I was 15 I went to see Tangerine Dream and could run my fingers through the moving intertwined sequences but tended to keep such intimate secrets silent. Then becoming unemployed, I happened to mention to someone that when I read it looks like the words were being viewed underwater as in a rockpool; they almost immediately told me this was not normal. Now I realise that ‘normal’ is just a setting on our dishwasher, but then it did make me feel outside, deficient or faulty, different to what people expected I should be. Neurodominance is a social construct of the many not us few.
‘Solutions at a moment’s notice’
I was summarily sent for a dyslexia test. However the prospect was quite disturbing, I was sure that after the five or six hours it would take I would just be declared ‘terminally stupid’. This was not to be and when I was called back in she spent an hour explaining what the geological looking graph with its many mountainous peaks and troughs meant. It did confirm I was not good at spelling and writing, I knew that but I was good at drawing, finding patterns and verbal comprehension. I guess that came from always being able to talk my way out of a situation which I had to do on so many occasions at school, showing an alternate creativity, finding ‘solutions at a moment’s notice’ in countering the abuse I often received. But I did love words, words tasted right in the right order, they would seem to physically ‘slot together’ and letters tasted or rather seemed to have personality.
On being told I was thoroughly dyslexic, my first response was to rebel against everything I’ve been told previously, that I couldn’t write, was to write poetry. I had tried to draw, express myself on paper but it seems so one-dimensional whereas words had life. Although I did win some international poetry competitions which
boosted my confidence I was very reclusive and became very solitary and separate from people. It was hard to come to terms with being dyslexic, not the stigma, far from it; I had researched why some people call it a gift; I was mainly dealing with the aftermath of realising it wasn’t my fault. I was proud of being dyslexic it enabled me in alternate ways such as the 3D drawing and cutaways I had been making for 20 years.
It wasn’t until London 2012 was announced that I made the decision to break free, ironically not knowing I would find myself in a couple years working on Olympic inspired arts projects. At the time I was reclusive, unemployed, living on a council estate but I knew inside I had something to offer and to prove to myself. I don’t know if it was the tone of the announcement, but something ‘captured’ me and I thought “well if that’s coming why don’t I do something?”
Spurred on I applied for an AA2A residency, grants and competitions, soon finding myself working as Artist in Residence for a train company mapping people’s journeys. Also, preparing for a solo show at Pallant House displaying a geological interpretation of my life story. Eventually both these projects were ‘seen’ and evolved into a new commission to document creatively London 2012 events and projects in the South East in geological metaphor. This played right into my strength as autistic as the final outcome was a geological map compiled from ‘field notes’ taken over 3 years obsessively recording each day’s journey.
Also there were ‘open weekends’, opportunities for artists to make celebratory work, placed in the public realm inviting people to join in. My ‘Dysarticulate’ project was one, encouraging people to make flags out of redundant book pages plus kebab sticks. An open invitation to plant them in open local spaces, draw them, dance with them, becoming the ‘lead artist for the day’.
I guess working within the Olympics gave me much needed confidence and was where I first realised my autistic traits of ‘connecting’ and ‘collecting’ could be a positive advantage as an artist. Yet somehow I didn’t fit the mainstream without support or encouragement, and I didn’t necessarily fit in with the disability arts world either. I inhabited my own no man’s land which enabled me to choose one or other side if and when I wanted to as if the distinctions didn’t exist. For me, even at this early stage, I knew it was about the work plus the story, not about what other people perceived may or may not be wrong with me. I didn’t want people to judge me or my poetry as “he’s dyslexic and trying his best”. I would often keep it hidden within, letting the work standalone; if they liked it they liked it and if they didn’t they didn’t, each was a validity.
My new freedom of expression led me eventually to be officially diagnosed as Aspergers in 2013 when I worked with Professor Simon Baron-Cohen in
Cambridge, and then Sir Peter Brook within the research for the play The Valley of Astonishment. Previous to this I’d been indoctrinated into feeling the way I ‘thought differently’ was wrong, faulty or divisive, never divergent, but these people recognised an inherent expression within the work I made and encouraged me.
I guess I’m more relieved with my earlier diagnosis of dyslexia because most of my life I had sat under the impression that I couldn’t read and write; the Aspergers diagnosis was a ‘completion of my complexity’ and a statement for support. It’s not necessarily the categorisation that’s overtly harmful but the attitudes and assumptions that go alongside it. It’s not the autism or dyslexia that are the problem but attitudes to the difficulties they may bring fitting in with society’s demands.
Strictly speaking ‘neurodiversity’ should embrace all human variations that have the potential to enrich society as ‘biodiversity’ does our planet. We need people who think radically differently or perceive the world in a totally different way but often difference can be scary. Neurodiversity is about a human variation rather than the medical pathology of say, Autism, Aspergers or dyslexia. We are ‘wired’ differently, some would say distinctly and its this value we can bring with our own lived culture, custom and creativity. Rather than continuing to be ‘a shoe horned fit’ it could be argued we need our distinctiveness recognised in the arts just as other diverse groups have been, we should indeed call for neurodivergent organisations led by neurodivergent people.
This is why positive awareness of any neurodivergence, support and adjustments are so important, but often to gain support you need proof and that proof is ‘labelling’. It’s almost the next step beyond the social model of disability and until we get society supportive or not to associate connotations of negativity, we will still need the duality of ‘not being labelled and being labelled’
Personally I’ve never really believed my dyslexia or Aspergers ‘disable me’,
socially , but it’s mainly people with their rules, attitudes, misunderstandings or advantage taking that do so, leaving a legacy of frustration which often reinforces depression or worse, which I do ‘suffer’ with. I don’t need to state I’m dyslexic or autistic, it should be about the work. I’m an artist, I’m not an autistic artist because that implies that I am doing it ‘despite being autistic’. I know that I am different to other people with autism in that I am happy to talk about the way my autism works with me, but doing this, wearing the mask of ‘perceived normality’, takes up most of my energy. In essence, to be in public and perceived as ‘fitting in’ I have to pretend
to obey an imposition which wouldn’t be that hard to change. This effort is often a double-edged sword, I’ve often had it said “but you’re so clever what do you need support for?” It’s how you put your vulnerability in front of others that counts. It shouldn’t be left to a series of accidents or a chaotic pattern of events that enable neurodivergent people to show or have the opportunity to make work, nor segregation into ‘special’ ring fenced events; we need an intelligent debate with action for nurtured understanding environments to give our best. But then isn’t that true for everyone?
I am also a synaesthete; I can touch time and music and personify number, and this also informs my working practice. I was once asked what it’s like to be synaesthetic. I stood for a minute before I answered “well what’s it like not to be synaesthetic?” I have no experience of not being synaesthetic so wouldn’t really know how to describe what I perceive as my lived experience in someone else’s terms.
For example, I demonstrated this once in Tate Modern having the rare chance to play in the Turbine Hall. Every time I’ve been into that cathedral like space I ‘hear’ seagulls as if I’m ‘by the sea’ where to me the high cliff is ‘my cathedral’ and the seagulls being the sung litany. What I wanted to do was replicate that in the simplest of forms so other people could experience it as an aural interpretation. I already had recordings of seagulls which were slightly edited and played through a small amplifier representative of the size of a seagull. It would not have honest played through big speakers as it had to sound like it belonged. I represented a beach tide strand line with yellow tape, playing the sound on the hour between 11 and 3. People looked, listened and sat as if on ‘their beach’ as the sound echoed it also filled the space. To me it was very strange to hear this outside of my head but it also made complete sense.
Neurodiversity not Neuroadversity
My autism not only informs my working practice, but the way I engage with life every day, and I embrace it as a hidden ability, not a disability. I make work because I’m an artist and I am compelled to ‘make’. I can’t say if the compulsion is an aspie thing, I’m often told by fellow neurodivergent artists that it’s not about the fame and fortune, but about that deep compulsion to make. I don’t make work to fit in with other people’s contexts, my library of experience is contained within the work itself
Neurodiversity in here
Unfortunately I’m often still expected to demonstrate my ‘neurodivergent talents’ but leave the autism at the threshold so they don’t have to make accommodation, as if they’re two separate entities or I can choose to ‘be’ either when I wish. One problem is people don’t ask us what we need either they look towards experts or make assumptions – assumptions don’t make safe spaces, safe spaces are attitudes that start in the mind, because people can make or break us; there is no space in between. We are experts in ‘us’ and we’re all different – one formula won’t work it has to be individualised. Neurodivergent people need to take the lead. The case is creative plain and simple, if you want to experience ‘performance’ that is different you need to commission makers who ‘think differently’ and look towards an ‘undiscovered country’, but then you will also need to think differently about how you interact with them.
Jon Adams, Research fellow and artist has established in collaboration with The New Theatre Royal Portsmouth and Threshold Studios, ‘Flow Observatorium’ to curate, campaign for ND acceptance and create safe space for neurodivergent practitioners and makers in the arts
Appendix one Formulaic diversity
Diversity should be people centric not a formula applied generic……No matter what new option you start with unless we change the ‘formula’ we use we’re always going to get to the same answer eventually – you can show this with a simple mathematical game – take a number – if it’s even halve it, if it’s odd multiply by 3 and add 1 (3n+1) and no matter what number or diversity ‘option’ you start with as you work through applying this formula you will always end with the same repeating sequence – tortuously in some cases even though we invest a large amount of time getting there.
People mistakenly see switching the number option as the agent of change and not the formula. For realistic meaningful change to happen there has to be total change, in this case at the start of the equation with the formula, the mindset we apply.
To achieve change using the formula you just cut out the ‘division’ – better still don’t apply a formula at all…………….
Number option being the ‘diversity’ or route options ideas etc The formula being ‘but’ or ‘the way we always do it’
Out of the Ashes – notes from the frontline of creative practice on the boundaries of visibility. #autism
My talk for:
Untold Tales of Neurodivergence and Mental Health in Oxford, a panel hosted by The Oxford Research Centre in the Humanities (TORCH) and Pitt Rivers Museum. Pod cast also available.
My talk today is about navigating the rapids of freelance work as an autistic creative and the challenges of working collaboratively across neurologies. My recent research has been a personal journey but has included a consultative partnership in the US and many conversations with autistic professionals across the globe.
I have come to know of so many talented hidden voices, and, while my talk is about a singular process, so much of what I have to say has a wider application.
My contribution to the theme of ‘Hidden Beneath the Surface’ is a tale of struggle in which becoming visible is an ongoing process and at times a question mark. What I offer are some preliminary thoughts culled from a much longer draft report for Arts Council England.
I am an autistic artist and creative project lead. I stand before you as a person in translation.
I form part of what has been termed the “lost generation” of individuals who are diagnosed late in life due to recent advances in knowledge about autism. In my work as a freelance professional, I need accommodations to access the same level of opportunity as that of my peers.
I am now coming to the close of a unique piece of work, a personal case study in the field of freelance project work funded by the Arts Council. The aim of this research is to design an enabling toolkit for my work as an autistic project lead, which I will also use to enable and mentor other neurodivergent artists.
The key to understanding this piece of work is that I have had to build my tool kit from scratch as my project has unfolded. This is the first time I have worked visibly as an autistic person and attempted to advocate for my needs in the workplace.
Freelance project work in the arts is often informal, characterised by highly individual working practices, and without clear structures. We need funding to create self-led projects from which to build sustainable artistic practices in line with our peers. Yet, without adjustments for the challenges involved, we can quickly become disabled in the freelance melee.
Our ideas are often powerful and original – funding us can be hugely beneficial and reap rich cultural rewards – but the barriers to our inclusion can be overwhelming. I have made it through the funding barriers, and yet my project proved disabling and needed major adjustments.
Autism as culture
Autism is both a neurological and cultural difference. We are a small minority with a unique social difference. We live in societies which expect and demand from us a social orientation and aptitudes which are quite other. This is pervasive and disabling in ways not easily recognised or understood by the majority.
But those who work with us don’t need to ‘get’ autism in its entirety – this is a big ask for our colleagues. Indeed, the demand to share personal information about ourselves to gain access is an issue in itself (Mia Mingus). In an ideal world, our needs should be accepted without question and active measures taken, but in reality, they are mired in social complexities, and we are currently forced to navigate access via the very social codes which can disable us.
Deconstructing the power imbalance
Aspects of my experience stand as a cautionary tale. The earliest iteration of my project floundered on the question of inclusion despite this being its primary goal.
The bare bones of my situation were that I had agreed to work collaboratively to shape a project around my needs. I had lent my creative idea, and my neurodivergence was the rationale for funding; but still my needs became submerged. So how did this happen?
Well, I think we need a wider understanding that effective inclusion is a two way street of adaptation, and that accommodating autistics requires the will to focus adequately and make significant and responsive behavioural changes towards us – especially in close collaborations across neuro-types.
And, while we may seem to speak the same language, our innate human difference as autistics can be greatly misconstrued, and our value as the very people who can generate ideas and employment can become easily obscured in practice.
There exists a certain ‘tone deafness’ to the nuance of our autistic being, which has been dubbed the ‘double empathy bind’ (Damian Milton).
Neurotypicals find it difficult to relate to and engage with autistic experience, and vice versa.
A mirror world exists in which the only difference between us is that of number. I promise you that many of the ‘flaws’ suggested by the deficit models of autism can be aimed at neurotypicals from an autistic perspective. This has perhaps been my profoundest piece of learning.
Project leadership and design
To lead a project, I need to work in ways which minimise my anxiety. Anxiety is a constant for many autistic people, and can become disabling.
High standards of professional practice can be extremely helpful in countering anxiety at work.
But my project had unwittingly placed too much reliance on a single means of access, and I was responsible for outcomes without being able to move the necessary cogs directly in an ambitious and complex piece of work.
This was hugely inefficient and anxiety provoking, and at times it seemed my project had been built on quicksand.
I’ve learned that enabling project design will include multiple and direct access routes, and allow for a hands on approach in all areas where outcomes matter, also that truly successful access must be written in at the point of design and not simply added on later. My toolkit and my thoughts about project design have begun to merge.
In the informal freelance arts sector, there can be a high reliance on NT friendship codes and relationships.
Autistic access needs can be socially misunderstood due to prevailing norms and the emotional needs of others. It isn’t easy to find a way to tell your colleagues that the emotional labour they take for granted can be taxing enough to make you lose the power of speech later in your day. Invariably, people tend to feel that your needs don’t apply to them, because these norms are so powerfully dominant and immediate in our lives.
But it is beyond stressful to decipher and manage certain types of emotional demand embedded in social codes at work.
My mid term project hack was to establish rules for contact, and filter interactions by limiting contact time and channelling all communications to one email address.
These simple adjustments quietened down all noise which was not work related. Some forms of invisibility can be a very good thing.
Masking and trauma
But generally we have to mask or otherwise camouflage autism in the workplace, and this is exhausting and destructive in the long term. It is this very issue my research seeks to address.
It is genuinely hard for colleagues to understand this, because autism can be invisible even when we try to explain ourselves, and such failures of communication can be genuinely traumatising.
Our struggles can be made clearer if we talk purely in terms of access and equivalences with other examples of disablement. The will or ability to adapt to our needs, however, lies in the hands of our colleagues and is not often in our power to influence via social means of negotiation. This is the nature of our vulnerability as freelancers.
As autistic professionals we face a bewildering tautology. In order to become visible, we must express our needs in translation. We share language and use the same words about a sometimes radically different set of experiences. We cannot thus assume a shared meaning or understanding. This is why it is vital to focus on the machinery of access – the nuts and bolts if you like.
Translating autism is a job in itself and no guarantee of successful communication, and though I am a huge believer in cultural advocacy in its many forms, I think it is unwise to expose ourselves to this labour in workplace negotiations.
Equality, I’ve come to think, should not require that we ‘overshare’ our vulnerability (so to speak). This can serve to accentuate the power imbalance in collaborations across neuro-types.
I think that smart project design will be the kind that fits so well you can barely see it. And for this, we need the liberty to design our projects around our neurological profiles, and present our toolkits as a matter of high professionalism. For this we need spaces to think and plan autistically, and to share and disseminate our learning, which is my intention.
My quest has taken me much deeper than expected but I think my learning is all the greater for it.
Visibility is not for everyone, because privacy really does matter and may be crucial for wellbeing, and the layers of our suppressions are multiple and complex. But I have found the urge to test these boundaries has brought the richest of rewards – that of personal and professional congruence. I am profoundly grateful to the Arts Council for this opportunity to develop my practice as an autistic creative.
In becoming visible, we encourage others to do the same. This creates momentum and so can lead to change. But, in doing so, we can be measured in what we share, and this too is our right.
We have now officially come to the close of an exciting Arts Council funded research and development phase, which has seen this project change shape in order to truly reflect and accommodate its autistic leadership. I’m incredibly proud of all that has been achieved, and of our contributing ‘neurotyopcial’ artists who have remained so patient and open-minded during this process. For a period this meant not knowing what our project outcomes would look like, and it takes a particular kind of faith to pin a professional stake on an unknown quantity. I hope part of the reward is to see it all come to fruition and be part of something pioneering and potentially revolutionary. We also have some exciting ‘realtime’ outcomes to be getting along with.
I’m especially pleased to have been able to develop a mentoring scheme called WEBworks, for a small group of autistic artists, and to have offered employment to two of my mentees during the latter half of the project.
As a result this website is designed, built and curated autistically, and I’m delighted to say the Museum is an ethical and congruent project both at front and back of house. A huge thank you is due to artist Hugh Pryor for his work on the website.
I’m looking forward to building more content about our WEBworks artists, and tracking our progress as we roll out a new model of mentorship for autistic artists – who so often get left behind despite their great talent and potential.
The website now has a quite wonderful Artists section where you can view each proposal for an exhibition in realtime – which will form part of our next Arts Council bid. We have also included a new Features tab where you can find resources on object related matters, including a growing list of book recommendations and links. You can also read about the fascinating project, Family Snaps! created by artist, Linda Hubbard, in our Artist Interviews section (the first of what we hope will be many such interviews with artists working with objects.) There’s a brand new blog page for Autistic voices – which will gather in posts about autistic relatedness to objects.
Our original Art Blog also remains at the heart of the project as a space for reflection and conversation about object work within artistic practices.
I’m delighted to announce that during this phase of MfOR, we have been able to commission a new video work by artist Naomi Morris which will be ready for upload shortly. Her video piece will be a response to objects from an autistic perspective.
It’s been a hugely enriching experience developing this project, and it’s been a joy to connect with others in the autistic community, notably aritst Jon Adams and the pioneering project for neurodivergent artists called Flow Observatorium.
Especially rewarding has been the opportunity to share my recent research at an event organised by Oxford University TORCH (The Oxford Centre for Research in the Humanities) – a pod cast and transcript of my talks are both available here.
I can’t end this blog post without expressing gratitude to my two mentors for MfOR and Webworks, Miranda Millward and Sarah Mossop. My project has thrown up many challenges and they have been steadfast in guiding me – I think mentorship (in a freelance context) for artists is a seriously underrated and unspoken need. I can’t wait to carry on our work together to encourage and support our WEBworks artists.
So watch this space! MfOR has become a living breathing entity, which can grow and develop both in online and ‘realtime’ platforms.
Raised up like this she inhabited another world. Looking out over the back of his shoulder while being carried forward. Lights blurred and streamed away from her like a Richter painting. She was being torn away from something but could not remember what. Stretching out her arms to try and grab something, the streaming lights were not solid and evaded her tiny grasp. Was it then she decided her hold on the world could not compete with the forces that drove it forward? Would she always be looking behind for something she had just lost? Aware then that she had been holding onto something, but now she was not. She screamed, howled, from the pit of her stomach and out. It filled the Richter paintings, it tore into them and they responded screaming, howling, screeching till all their colours became solid like glass and shattered into a million fragments.
A sense then, of a colour, a soft yellow, pale tactile yellowy something. She could not remember what it was she had lost.
I have felt sympathy for objects since I was a very young child.
This has caused me a huge amount of sadness and anxiety over the years. I feel sad for the photograph that gets pushed to the back of the display cabinet, the guitar that doesn’t get played anymore, or the once loved camera that has now been displaced by a newer one. Continue reading →