March 22, 2019 § Leave a comment
This week I’ve had cause to think again about the question of autism as a label. My default position is to feel autism as an identity. For me this is joyful and unassailable. Try to wrest it off me at your peril.
My team and I are in the final run up to the Neither Use Nor Ornament exhibition, otherwise known as #NUNOproject. Our work has been to create an equal platform for two artists networks, one identifying as neurodivergent and the other as neurotypical. I’ve had to adapt the project as we’ve gone along, due to artists’ highly understandable sensitivity about ableism. It would be an understatement to say, we’re not there yet, re public perceptions about autism. You can read about this in a newly published, curated collection of blog posts on our lovely Museum for Object Research website.
In terms of the project this is something I’m still brain-wrangling. My priority has been to create optimal conditions of access and benefit to the artists involved, but if we’ve been funded on an autism ticket what does ditching labels mean in terms of delivering what we promised? We are, after all, committed to challenging public perception.
I am painfully aware of my disabilities at times. I am seriously compromised by dyslexia and dyscalculia, and this project has often pitched me against myself as project manager. I never felt so aware of my limitations in this regard – for me the rules of spelling and grammar are seriously disabling in ways I can barely explain. I will NEVER learn them, or be able to see on a page where my errors lie. In my world view, insistence on them is traumatic and oppressive. I will always fail to meet their standard, and can’t fully grasp why they matter. Computer says no.
Acquiring help is the obvious answer, but nonetheless, alone I cannot do the job. Don’t even get me started on numbers. The word nemesis doesn’t cover it.
Don’t doubt the shaming or exclusion involved in specific learning disability, nor the impact on a person’s life. I am seriously compromised when navigating new or complex travel systems, for example, which can render me as helpless as a baby, and entirely reliant on the kindness of strangers. And forgive me if you do identify as dyslexic or dyscalculic, what I am about to say is entirely personal to me as I do feel that autism is perceived differently. I understand that others might not agree.
However, foolish I may feel (or may have felt historically) I know at least that I am unlikely to be othered for my seeming ineptitude. I will generally be meet with sympathy, and usually kindness. Invariably, I meet someone wonderful who takes me under their wing and who goes the extra 500 yards to see me on my way.
Autism is different. Out yourself as autistic and you’ve got a whole new ball game going on. This is why I have yet to out myself to strangers in extremis, though I have been close to it several times since my diagnosis. A meltdown on public transport has only been averted by my time honoured strategy of asking someone to help me filter and decode the information I need by explaining simply that I can’t work it out. I have never explained yet that I’m overloaded, or so desperate that I want to throw myself down on the platform. And no it’s not a tantrum, now we’ve got here.
So what happens when you out yourself to a whole network, and an entire community all at once? What happens when every person who works on your project (from your exhibition poster printer to your booklet designer) knows you’re autistic? Every person who visits the OVADA gallery during our show will likely read the poster, which says I’m autistic, including the current Lord Mayor of Oxford.
Next week I will go on BBC Radio Oxford to talk about my project and my autism. I hope that copy about my project and my autism will appear in the Oxford Times next week too.
I have thoroughly outed myself in new and diverse ways. Okay, I’ve been writing about my autism for three years online, but people in my neighbourhood will now look at me anew, and I will soon know what it is I have done in creating #NUNOproject on the most personal of levels. Every person in my professional network will know I am autistic – and this will surely impact my future work in ways that are unknowable to me.
I recognise that in some profound and irreversible way I’ve unmasked myself, and that yet in doing so I’ve hardly faltered, feeling that it is worth it for my community and for the future I want for my children. But it’s not all about altruism and social change.
I’m an autistic person who embraces my disability as identity (not all of us do), and finds the ‘label’ liberating. The more I push through the better my life gets. I only struggle when confronted face to face with people who are patronising, angry, or want to deny my struggles. I chose to paddle away as quickly as possible. I’m too old to spend my time engaged in this kind of nonsense. I’ve spent too much of my life confused and wrong-footed. But I have the luxury of choice because I am a freelance professional, and of an age where the tendency to please others rapidly diminishes.
I feel there is something ineffably powerful in gaining congruence – though I see this as privilege, because so many humans are forced to be other than themselves to fit in. Once tasted, congruence is so good it’s almost addictive.
I remarked the other day that I now no longer think about my autism so very much. It’s not the first thing on my mind when I wake up, and I no longer have to pinch myself. This too is privilege, and a sign that my life is presently aligning with my needs.
A powerful predictor of our resilience lies in the responses to our autism in those around us. I’ve benefited hugely from the love of my family and the bonds formed both online and IRL with my autistic community.
I want more of this for more of us, but I will be telling Arts Council England that our relationships with autism are complicated. We need to build choices about masking into opportunity, and allow for the impact of a lifetime of ableism on an individual to create fluctuations in confidence about unmasking. Unmasking can be wholly situational and should not be treated as a static goal, in my view. We also need to be aware that ableism can make a label out of identity. Finally, I will pose the following question in my evaluation; how ethical is it to encourage artists to unmask for their art?
My future vision, conjured by this blog post, is to create an art project as a sanctuary for artists, as a space for recovery and renewal, without the pressure to perform an identity or assume a label to earn the privilege. Watch this space!
Goodbye for now, but hope to see you at our opening event!
If you can’t make it, we look forward to seeing you online, and you can catch all our content here.
December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.
I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.
Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.
Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.
The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.
A non sequiter I know.
The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.
So my boxing day was interesting. I spent the day in a blur playing catch up.
Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.
But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.
It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.
So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.
My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!
Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.
So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!
I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.
So my New Year resolution is very different this year. For 2019 I promise not to change a thing.
November 22, 2018 § 2 Comments
In my day job I am a visual artist with my own practice, but I’m also a community artist, mentor, trainer, and consultant. I work on various community arts projects as a freelancer, and I also lead my own project over on The Museum for Object Research.
I’m writing to share some of my findings after three months of working towards an inclusive Arts Council England funded project, where autistic and non-autistic artists will exhibit their work together (in March/February 2019 in Oxford). So there’s still a way to go. Our project title is, Neither Use Nor Ornament, or #NUNO for short.
It began with the grand idea to bring together two distinct networks, one predating the other. The longer standing group of non-autistic artists were to show their work in an exhibition that had already been planned. The newer group of autistic artists would create an events programme to run concurrently, thereby creating a distinct but equal platform while allowing for a cross-pollination of ideas and influences.
In my minds eye – the group show appeared as a fixed point at the core of the project and the events programme whizzed around it like a Catherine wheel! I liked thinking about the dynamic interdependence of each element as a metaphor. Could this be a new model in the making?
Audiences would certainly gain a sense of contrast – and when we began the project, the two networks were indeed quite separate, their only real point of intersection being me. But would it make any sense beyond my own imagination, and would this represent genuine inclusion? As a visual artist especially I need to ask myself, what does inclusion look like?
The project (in a nutshell) is really about one person’s professional journey towards congruence after a late diagnosis of autism, and their (my) greater commitment to journeying in company for the benefit of a wider group. My project is about making change happen for some of the artists involved, it also seeks to inform arts organisations. Challenging audience perception is important to us though our spirit is not confrontational.
Our first model was what you might call high on visibility. At this point, I didn’t know any better.
High vis ( or ‘Day-Glo diversity’!) could meet with approval from a body like Arts Council England, who we know need to be seen to be doing better on this score.
But as my project progresses I’m increasingly wary of the Day-Glo approach, which you see quite a lot in the arts right now. Genuine work is taking place in some cases but I’m disquieted by this trend in diversity signalling.
Inclusion should be an every day thing, rather than exceptional.
A hegemonic insistence on ‘normality’ conditions us to believe that signalling ‘difference’ in highly visible ways challenges perceptions and therefore creates an instance of inclusion. There are times when this works precisely because our assumptions about who can be a player in society are so rigid.
But this strategy of ‘watching’ difference and ‘noticing’ it (as inspirational often) implies a norm from which ‘difference’ is discernible. This is hidden ‘centring’ and we must tear off the fetid blinkers of normality conditioning to see it.
Losing that fixed point, ditching that norm, and embracing diversity within humanity as the default setting would have us up in arms at the inequities of our very biased everyday assumptions.
At this point I refer back to the wisdom of an autistic child I knew, whose logical insistence that if we’re all different (as we are) then nobody is special when it comes to educational need (or anything else for that matter).
Ghettoisation (in the name of inclusion) within mainstream education can definitely be a thing – and it has marked this young person – as a teenager their instinct for survival prompted them to ditch all visible support. Not wanting to appear ‘different’ (because it so stigmatised them) tells you everything you need to know about being singled out for ‘special’ attention in ‘mainstream’ education.
Obviously school pupils turn into adults. Some will go on to wield power and be the decision makers of the future. What will inclusion mean to them? What does inclusion look like?
Some of them will also buy lottery tickets – an important source of Arts Council England funding streams. Therefore (if current systems remain) some of these pupils will go on to fund projects like mine. Their adult counterparts of today have indeed funded my project, and ideally they could be among our audiences too.
My project is an attempt to reach out across these invisible fault lines, but the scales have fallen from my eyes. My Catherine wheel was never going to take off, I was in thrall to a ‘neurotypical’ hegemony called ‘normality’.
As our work has gone on, I’ve listened to the artists on my project and absorbed the effects of high visibility on each one of them – and not all of them want it. Creative practice may seem like a ‘safe zone’ for the kind of self expression which extends to autistic unmasking – but how safe is it really? The problem with gaining a professional platform is precisely that you can be seen. Irony!
And where invisible disability is concerned (such as autism) – some of us have been conditioned to mask our difference in order to survive – stigma and discrimination threaten if we show ourselves.
Art practices do not exist in a vacuum and art alone cannot dissolve ableism – we’ve needed to get real about this. We don’t chose to use masking strategies, they occur as an adaptation. I know that it’s a relative privilege to mask, not all of us can do this, but for those who can it is a right.
Yet increasingly privacy is being eroded – we are encouraged to share professional profiles on the very social media that friends, families and colleagues use. It is now almost impossible to control personal information which forms any part of a public persona. Very recently this happened to me.
The funny look at the non-autism related exhibition opening. I experienced it only the other day. Oh, you’re Sonia Boué. My ‘fame’ in this instance was an autistic person not an artist. A googely-eyed stare is not the end of the world but it’s not a great look. I’ve learned to brush it off, but that’s not the point. Invisible disability can demand a calculation at each and every turn. It’s exhausting and sometimes the cause of great anxiety.
How much of myself do I show? Where are my safe zones? How often must I pretend and wait for my unmasking?
Mainly we must ask ourselves, what will it cost me? Will it cost me my job, if I have one? Will it affect my mental health?
Will I be bullied or abused?
And here, of course, my heart bleeds for the autistics who cannot hide. The point is that no-one should have to face this.
But for me this is one reason why an ideal model of inclusive practice comes without a whizz and a bang. Some of us need to mask our identities while gaining in rightful professional development.
In any case, I wonder if great inclusive practice is something you can’t necessarily see!
Increasingly, I think this could be a truth to live by. Not only is inclusive practice potentially a quieter, more careful and considered game than I’d imagined, but the ultimate goal is that we genuinely don’t see ‘difference’ because we’re all included equally.
So it isn’t so much about what you see that counts. What matters is the activity that goes on behind the scenes to make a piece of work happen in a manner that’s ethical and beneficial to all.
As I move forward with my project I find that my ideas are shifting.
Our new model is still forming, and the much longed for cross pollination of ideas and influences is taking place. I’m pretty sure I haven’t always got this right, but the learning curve gives a spectacular view. I have a brilliant team and the most wonderful artists on board. The biggest change for me is that I no longer see my project as being one of two parts. Probably that’s what inclusion looks like.
I’m grateful for ongoing conversations with the Arts at the Old Fire Station & Crisis Skylight partnership in Oxford, and with my mentor Miranda Millward, and with Thomas Procter-Legg Headteacher of Iffley Academy in Oxford, in informing aspects of my thinking about inclusive practice.
I’m also grateful to Alastair Somerville of Acuity Design for his thinking on normality, in particular his latest writing on Building a normal world.
August 29, 2018 § 4 Comments
Photo by Hugh Pryor. Image of Naomi Morris, Neither Use Nor Ornament, Research Residency. © Hugh Pryor, 2018
Unmasking has become a hot topic for some autistics recently. In reality it is (and always has been) a daily negotiation.
What I want to say in this post is that, while (it must always be acknowledged) some of us don’t have the luxury of choice about masking, others are dancing a daily (if not hourly) delicate dance with their masks.
Some have (quite rightly I think) questioned the term masking – here meaning a survival strategy adopted by autistic people. The social carapace, role playing, performing neurotypicality, faking it – are all terms which can be used to describe what we do at any given time, mainly (in my case) unconsciously (until diagnosis that is).
And before we go any further – ‘faking it’ here goes beyond ‘normal’ usage.
One fascinating consequence of my identification as an autistic person is that I can now tell when I’m launching into social adaptations that go beyond the me I’m more comfortable with. There must be shades of masking, gradations if you will. Some late diagnosed autistic writers I’ve encountered (via blogging) write about the difficulty in knowing where the line is between the adaptations they’ve learned and the ‘authentic self’. Articulate and deeply intelligent beings they often conclude that there is no such line.
The ‘authentic self ‘as a concept is flawed. Perhaps what we can best say is that we are deeply influenced (as all other humans are) by our nurture – except that in the case of autistics the nurture has so often been the wrong fit. We want – in important ways to return to nature, to our natural selves. The problem is locating the self in an alien milieu. This search compounded by the ‘loss of self’ implied by masking (in my view).
My own experience is that second guessing what others want from you – as a blanket survival strategy – leads to immense confusion in the area of identity. I’m glad to leave this aspect of masking behind me.
That is not to say that I don’t mask – of course I do – my professional life depends on it (despite my also being ‘out’ as a professional), and in reconstructing my personal life (post diagnosis) I am often immensely grateful for the many masks in my repertoire. I am infinitely more comfortable and honest as I move through my days, and as I observe myself slip on a mask. But this doesn’t mean I have it made. I don’t.
I still get caught out. I still find certain situations overwhelming. I am still humiliated.
All I mean to do here really is observe some changes, and reflect the difficulties inherent in the actions both of masking and unmasking.
And this is pertinent to my professional life too.
Central to my work as an artist and creative project lead is the idea of being ‘out’ as an autistic. My own creative work as such is not about autism, but I am committed to championing autistic arts professionalism (as I see it) within my sector (freelance visual arts practice). The autistic artists who currently work alongside me form part of an experimental project in which we seek to challenge preconceived notions about autistic artists. We are not savant, we are not outsiders, we are professional people doing a great job. (Unfortunately this will be news to many!)
This would seem (on the surface) to be a wholly professional matter. Except that of course it isn’t because it involves our unmasking – that delicate and infinitely unstable (because it is constantly shifting) negotiation of the self. This is so utterly personal!
Imagine the masks we use as a cache of theatre props and costumes or a child’s dressing-up box. Imagine having to constantly judge each new situation in your day and rummage through the box for the right thing to wear. Imagine tuning in to the voices to find the right voice to use. Imagine studying the gestures to match them perfectly. Blend in, blend in – don’t show yourself as you truly are because you won’t be accepted! And all without consciously understanding what is happening or why (before diagnosis).
For some of us this process will have become entangled in our creative work. Performers especially so, I imagine.
For the artists I mentor I usually suggest tuning in to the inner voice. This is to avoid a tendency to fragment and mask in the face of outside influences. Locating a calm and loving inner voice can be a real challenge however.
This is why I’m currently loving the idea of quiet reflection – the practice of creating spaces in the day for the chatter to die down. Observe the masks, observe the self, practice with and strengthen these muscles of observation (if you can).
Recently I’ve had cause to think about this key element of the incredibly powerful and exciting Neither Use Nor Ornament project. I can’t assume anything about where we will all be with our masking at any given moment. And that’s a wonderful dynamic to work with when you think about it. What better example of nuance in presenting autism could I dream of than the now you see us and now you don’t reality of our lives.
In writing this I realise that so much of the anxiety of unmasking is in the reception we receive – and that’s the bit we fear most because it can be dangerous (and or humiliating) for us and that is unpredictable. SO privileged am I in my unmasking today that I often forget the deep deep root of my social conditioning in the playgrounds and playing fields of school. I forget that for many autistics, especially where other minority status’ intersect, unmaking is unsafe and not an option. I plan to work much harder to remember – and to coordinate the project with this at the forefront of my mind.
If we wobble in our resolve it won’t be through cowardice – if we chose to mask in specific situations there’ll be no judgement at all.
I emerge from blogging today with a new image for the project – that of a beautiful sparkly multifaceted gem. Not all surfaces catch the light at the same time. Let this be our motto.