October 26, 2019 § 4 Comments
Well, I try. The last time I used this line (in a poem) I was met by guffaws. My children find me hilarious, a fact I often find bemusing but welcome. I don”t think my head will ever get too big while they’re around to remind me that I sometimes risk being pretentious if not risible.
In my art practice I’m building up to new works, and am encountering new ideas in my other work too. I have many jobs (or many projects more accurately put) to which I can now bring a lifetimes experience of the kind that matches, when so often in the past my experience has been out of kilter. I’ve also been given a creative opportunity which has over the past year blown my practice wide open. These two related events are working a strange kind of magic on me.
We are a sum of all our parts, it’s said, but for autistic people it can be hard to experience the parts as connected. I certainly didn’t until quite recently. This feeling of fragmentation is something I’ve written about before. I think about evolving as an autistic person since my diagnosis in 2016 as a series of incremental steps towards a feeling of congruence. I believe the mechanism involved is the unlearning of unhelpful coping strategies and exploring new more suitable ways of navigating the social world.
With my relatively newfound anthropological lens on life even my mistakes become opportunities for learning. I’m no longer mortified, feeling (quite rightly) that I can’t help being ‘blunt’ at times. I’ve decided I really would like a t-shirt which says, congenitally tactless! I feel it might go down well at parties I will never go to and be quite fun to wear. I’m not the first to notice that people like it if you get in first with the joke and don’t mind having a good humoured chuckle at yourself. But I’m getting ahead of myself.
For some autistics this would feel very alien advice and so I don’t share it as advice (because for many of us being the butt of the joke all our lives has been bad enough without any own goals in this department). I share it as an observation (from a self-confessed privileged vantage point), and because I’ve found that opening up about my areas of struggle enables others to come forward too. This is revealing and, I think, important – I remain convinced that there are more ND people in the world than the world currently knows about. Also that in accommodating our needs we accommodate others. So privilege and path-beating go together.
As I continue my journey towards autistic congruence, I can’t help thinking that the high incidence of hostility to social difference in our culture can block our ability to experiment and learn early on in life. Accurate perceptions about autism in the non-autistic population are also equally stymied it seems to me. As I’ve said so often before, if the welcome isn’t right we can (unsurprisingly) become contact averse. Like so much misperception about autism this process (in my experience) is an ongoing social dynamic whereas people tend to think of autism as a fixed state of being. This is not to say that I think we need more encouragement to adapt to the neuro-normative society we find ourselves in (this is not what I mean) – simply that with the right knowledge and conditions we can all learn from one another across neurological types.
The discouragement that an autistic person might receive over a lifetime can perhaps be seen as an incremental force in the opposite direction to the one I’ve found myself travelling in since 2016. This is a truly terrible thought. Okay, I’ve always ‘worked on myself’, but it’s become clear I was working with the wrong information. As I said quite recently to a friend – it was like I was paddling along in a canoe and suddenly I was given a turbocharge engine.
I can’t talk about my new work yet, but it makes my pulse race and spurs me on even as we face the tipping point of winter (my life long nemesis!) What I do want to do is offer encouragement to others, wherever you may be in your journey to congruence.
This is why I make myself visible, because in the words of Soweto Kinch on BBC Saturday Live this morning (about 20.40 mins into the programme), you can’t be what you can’t see. This too I want on a t-shirt.
April 20, 2019 § Leave a comment
Journalist Christy Romer has written an article for Arts Professional entitled, Arts Council England urged to replace Grantium.
Romer states, “Arts Council England (ACE) has admitted that it’s “intuitive” funding portal Grantium, intended to “bring [ACE] into the 21st Century”, is seen within the sector as a failure.”
This admission follows a public consultation into ACE’s forthcoming 10-year strategy.
For those of us – including those with hidden disabilities – who have battled quite vociferously with Grantium over the years it’s a case of, no shit Sherlock!
I have no compunction in saying that it is a truly dreadful, ableist, contraption, which could have been purpose built to frustrate and tangle the mind. Access help is available – but this has always been an add-on accommodation which many have not known about, and which in any case is not suitable for all.
I won’t go into the details of the newly published ACE report here, but rather I will focus on Grantium and the application system from a personal perspective.
When I myself answered the consultation document it was with dismay at yet another online form which didn’t fit, and which seemed instead to cover many irrelevancies to my professional life as an artist and latterly as an arts organiser.
The language ACE uses is rightly criticised – it is often jargonistic and hard to read or make sense of. It also speaks to artist applicants and arts organisations as though they were one and the same thing. This is a major issue, as it places individual artists under great and indue pressure at the point of both application for and delivery of an ACE funded project.
I feel that the possible attempt to ameliorate this through the creative practitioner funding stream is compromised by the relative smallness of this particular pot.
In addition I have long wanted a conversation about the more deeply rooted inaccessibility of the funding model for many individual artists that goes beyond any physical portal (dreadful or otherwise). Grantium in a sense is the symptom rather than the malady. I feel there’s something deeper and more grave at the heart of ACE’s ongoing diversity ‘conundrum’.
I often think of the current criteria for funding applications as a series of demonstrable promises which must be made to weight the application in your favour. The need to impress, to be seen to cover all the necessary bases and more, is a worry at best, and disabling at worst, where disability/divergence are concerned. In which case, one of the present choices at hand is to offer up the ‘divergent self’ as the project. But this in itself (while being a successful and robust strategy when offered knowingly), is not entirely equitable. Indeed, you must still make your application promises, and articulate them in the requisite jargon, in addition to opening yourself up to the kind of sharing not necessarily required by other groups.
Loathe Grantium as I do, despite my learning to use it and to succeed in applications, I am almost more disquieted by the latest ACE pronouncement on ‘relevance’ as a driver for funding, as reported by Romer.
In some ways protected groups like my own (autistics) have been and will continue to be at the forefront of funding opportunities (mainly as subjects or recipients) – we are socially relevant as a group. We’re just so beautifully and unequivocally ‘divergent’! But how well our needs will be matched through these means is an ongoing question. Whether we will be even more likely to be opportunistically ‘targeted’, and/or our divergence harvested by others is an open question.
What concerns me and what I encounter in my working life, are the needs of neurodivergent creatives who are disadvantaged by a heavily coded system, where demonstrating outcomes which are value driven apply equally to organisations and individuals. This is not consonant with meaningfully supporting artists, especially those with ‘protected characteristics’.
Paradoxically, artists like me are ‘relevant’ by our very nature, but demonstrating the relevance of our projects may be beyond our ken because it will be further encoded by a neurotypically-led bureaucracy
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.
February 2, 2019 § 4 Comments
Yes – it’s happening again. Well-meaning cookie-cutter ableism is at the heart of a theatrical production in the UK once more.
We’ve been here before quite recently with Kibo Productions The big Things, in 2018; non-autistics writing plays with autistic characters determining the action, their autism and their characterisations being ‘othered’ right down to the marketing.
For All in a Row the autistic character is played by a puppet, and the marketing features an image of a row of three yellow fondant fancies with a single upended blue fancy to signify autism. It is immediately apparent that despite its focus on a minority group this production has failed to consider the need for sensitivity consultation.
You have to wonder if in the UK in 2019 this would happen in the case of any other minority group. The problem here is that the adult autistic community is not considered where portrayals of autistic children (or indeed adults) are concerned.
In both cases we’ve heard online from the playwrights about their genuine credentials for writing on this subject – the close friends, the years spent caring on the front line, the meticulous research, and consultation with the National Autistic Society (NAS) – perhaps flirting with the suggestion of an endorsement.
Yesterday on Twitter the author did respond to Tweets by @krystinanellis, some of which I think have since been taken down, but Alex Oates seemed to suggest that the character could not be played by an actor because it was so ‘individual’. Alex consulted parents, they loved the puppet idea, puppets make terrific theatre, et voila!
I’m torn between the puppet device and the blue ‘tits up’ jaunty fondant fancy as to which I find most offensive and frankly ‘othering’.
The play promises to be ‘startling’. It already is. The author promises a video explaining the thought processes behind the puppet idea. I heart the Tweet reply from @g_ting
Once a production gets this far those involved invariably dig in. They have no other option. Obviously with hindsight they should have considered community and avoided such a horrible blunder. Yet again we face the painful truth that adult autistics are not ‘in the room’ yet. We remain invisible until we speak out, which is why I’m spending my Saturday morning writing this post.
It’s really very simple. Creating an autistic character that can’t be portrayed by a person, where all other characters are played by people, is dehumanising. Using dated and clumsy marketing, especially using the colour blue (which is associated with problematic Autism Speaks imagery and campaigns) signals ignorance and stumbles unwittingly into the territory of ableist propaganda.
I wish I had time to write a more eloquent post. I wish I had time to mount a campaign, but I’m too busy trying to work constructively for my community to take this on.
I hope that by speaking out I can join the conversation and inspire others to form a plan.
May 16, 2018 § 34 Comments
It’s been a curious time – one of transitions, I guess. Spring weather and lighter nights coincide with reaching beyond the 2 year anniversary of my diagnosis of autism.
A decisive diagnosis of Asperger Syndrome came as a surprise, I expected equivocation and maybes’. Hidden disability is a tricky rogue, adept at fooling even the person who embodies and lives it. A subtle form of gaslighting is our daily bread. You look fine! You seem okay! Why can’t you do that? You did it yesterday…
These are the conversations we internalise and play on repeat, looping endlessly, until diagnosis day or the day/s self-identification kicks in (either is good in my book).
From this moment you can begin to deconstruct, understanding ever more the hows and whys of the daily struggle. Sometimes we wade through treacle, and sometimes we glide like swans. Only careful unpicking reveals why (though the why is often maddeningly elusive). Finding out why is so helpful. Finding out why (I find) often requires a group conversation. This can be quite random for an autistic person – a process of sifting and happening on rare pieces of gold.
But these golden nuggets can be just what we need to rub the looping critical internalised voices from our minds. Yesterday I learned about aphantasia from autistic blogger and researcher Shona Davis. Aphantasia relates to the inability to visualise images. I’m still wrestling with the concept and am uncertain that it applies to me wholly, but suspect that at least partially it probably does . I often find that peeling back sensory and/or neurological difference is cloudy at first, my kind of ‘normal’ is long lived and late diagnosis can feel like playing a game of tag with yourself. I’m also a little hung up on how literally to take ‘seeing’ pictures in the mind as an expression, let alone arrive at a whole new diagnosis just like that. But it sounds like an important thing to know about yourself when so many areas of life can be affected.
Okay aphantasia is not well known or researched, but I find myself reflecting in new ways on how poor information and services are for autistic people, how little attention is given to the detail of our diagnosis. There can be so many strands to each individual presentation of autism. Not only should we as a society embrace that fact instead of chasing tired old stereotypes about autism, we autistics should also receive commensurate support.
Aphantasia could provide the key to so much understanding of the many ways in which I struggle to learn and retain information, recognise people and keep them in mind when they are absent. It could also relate to the intense need to see and touch things to understand them, and to learn hands-on rather than in the abstract.
I also feel I’ve reached a tipping point after diagnosis in which I must begin to reconstruct my life. There comes a point where all the carefully garnered information about autism and reinterpretations of my decades on the earth should lead somewhere – to forming new helpful habits and adaptations I hope.
As I drifted off to sleep last night I tried to conjure a scene. Useless. See a yellow bucket, I said to my sleepy imagination. Imagination said no.
If I screw my eyes and dig back into word association fleetingly I get something – a picture book bucket. I find a black bucket easier to conjure (builder’s buckets are a stronger image – more familiar probably – but slippery as sand in my mind’s eye). I don’t get nothing at all but what I get is faint and has that rolodex quality which facial recognition also contains for me. I get there by association. I don’t see black (as some report) and I don’t see words either. Perhaps what I see is something in-between?
The more familiar an object is the more clearly I see it but it quickly skips away. I can see my fantasies (I can see pieces of art I’ve made or imagined pieces) but I can’t seem to conjure images to command. There are also powerful visual experiences which stay with me that I can’t easily rub out so I feel this form of seeing for me may be deeply linked to emotional engagement at the time of seeing (if that makes sense).
I reflect again how poorly I understood the variety within our autisms when I read Temple Grandin’s incredible book, Thinking in Pictures, so many years ago, desperate to understand my newly diagnosed child. I can now see that fascinating as it was it didn’t help me all that much. They don’t think in pictures either – though obviously some autistics do, while others of us can’t conjure a single mental image.
My work as a visual artist is curious when you consider that I don’t have this ability firmly embedded in my neurology, and that my visual acuity is otherwise high. I’m incredibly visually sensitive (sometimes this is painful) and this guides me in my work. Probably, as in so many other ways, I’m just navigating differently.
Yesterday I took a picture of a broken plastic magnetic letter while out walking (a new habit). It is orange, the magnet is missing and it lies frontside down. I can see it clearly in my mind and this image is stable. Is this because it struck me so? Is it because I took a photo, and then spent time editing it on instagram? Is it because I love orange? Or is it because it is the letter which begins all the names of the men closest to me?
In recalling it just now before adding the image I had forgotten that it was broken or that it had a small blossom resting on it. Otherwise my visual memory was strong.
I think the truth may be that when it comes to detail and specifics, when there is time to embed an image (as in the creative process) and when the emotional pull is strong enough I can visualise an object. Visualising a whole scene, or something in the abstract is something else entirely.
Somehow knowing this feels like a huge step in rebuilding my life.
March 27, 2018 § 5 Comments
I’ve been quiet on matters autistic – taking a break and inhabiting pastures new.
But it feels to me that late diagnosis is a process, with a pattern to it. Like with any process there are stages, and one day we’ll know what they are and books of the self-help variety will no doubt be written – I hope by autistic people. And books are being written – of all kinds – by autistic writers, which is wonderful. It’s just that presently we don’t have an overview because as a culture we’re pretty new.
I feel myself edging towards a new stage – one of certain detachment and reevaluation.
I did want to ignore autism awareness week but I find myself writing a blog post instead. How random it that? As random as a week in which to be aware of autism, I expect.
As random as getting caught up in online arguments, feeling triggered and generally being more stressed (like at Christmas) because humans in some number have decided now’s the time to be aware that autistic humans exist.
So my blog post is not intended to become part of all that. On the contrary, what I offer is a possible antidote. I’ve nothing against randomness per se, it’s just that I feel I’m not obliged in anyway to engage with what I see as randomly orchestrated events, especially when they have such potential to create turbulence in our lives.
I propose to deal with the problematics of autism awareness week autistically, by (in my case) deploying my unusual lack of calendar awareness – yes, for me calendars are quite surplus to requirements, as I navigate through time and space by other means. Calendars can be helpful but who needs all that detail!
Sensory navigation is far more enjoyable (and quite effective generally). Okay it does mean that you miss an awful lot – including for example when Easter is due. I know it’s coming up soon, but the precise timing of Easter is foggy. So it shall be with autism awareness week. We may be in the middle of it but by the power of autism within me I can forget this VERY easily.
Okay, I’m lucky. I’ve never knowingly ducked the issue of privilege in my writing but it’s worth restating for newcomers. Some of us can’t avoid autism awareness week – maybe it invades online spaces which act as a life-line. Now that is serious. What to do?
Well, we may be able to chose not to scroll through comments getting more and more triggered. We may be able to resist comment – thereby avoiding being drawn in further. This sounds so very Zen – probably it is. But honestly, after getting seriously burned more than one time chasing down triggering material I’ve developed an aversion to it. I learned that those who comment online often bait, or can have inordinately closed minds, that this is frankly exhausting to counteract, and can lead precisely nowhere. Worse, it can make us downright miserable.
I’m not talking about potentially fruitful debate (sometimes we just don’t know if the other person is genuine), or countering misinformation – to be clear – I’m aiming at the flotsam and jetsam of internet life (the crud which surfaces and does the rounds).
We’re a righteous people – of course we are – and we’re often maligned and misunderstood. I’m learning how easily we can be drawn in on a wash, spin, repeat cycle, but also how this can represent a constant return to familiar trauma sites.
Obviously, each one of us must make our own choices on how we manage this. I’m not preaching.
I’ve been asking myself honestly if I want to spend my time doing this, and the answer is that I don’t.
Putting out positive messages suits my temperament so much better. SO I’m trying an experiment.
Can I be critical and positive? Can I find ways to infiltrate where I can influence more?
Let’s see what this week brings. I’ve already been more vocal today than I have been in months. Perhaps the value of such blighted awareness campaigns are that they can make us think about how to do something differently.