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.
January 23, 2018 § 20 Comments
Photograph by Stu Allsopp 2018
Don’t bother reading this. Yes – probably this blog post has been written before. Possibly even by me? I’ve written so very many posts since my diagnosis that even I can’t keep up!
Deja vu, reinventing the wheel, this is what comes to mind when I hit the web these days. Voices that have been silenced for a lifetime are compelled to speak, and in so many ways blogging is the perfect mouthpiece.
But I’ve become weary about sharing my life online.
Suddenly – as I approach my two year diagnosis anniversary – the plane is tanking. I’m not giving up on activism. There’s probably just a limit to how long a person can keep going without burning out a little, or even getting burned (which indeed I did in 2017).
Also there is overwhelm. It’s brilliant that the blogging scene keeps mushrooming – but it’s also that much harder to keep up.
And frankly ‘the autism conversation’ can feel a bit Kafkaesque these days. Working to counter prevailing narratives is a hamster wheel. The more you repeat the mantras – not broken, not a puzzle piece, not ‘with autism’ – the more they seem to come back at you.
It can feel like no one is listening – the majority aren’t. Perhaps they won’t or maybe they can’t? This is a question which troubles me greatly.
Yesterday – because my grasp of language is slippery – I found myself looking up the meaning of the following two words.
Realising quickly that I was out of my depth (I don’t really get the genres this language belongs to and I’m keen not to give the ‘aliens’ trope any additional help). But I am left with a craving for a vocabulary to express the inability of non-autistic humans to see us as we really are.
In the double empathy bind Damian Milton describes a difficulty in the communication process which originates from both sides of the ‘neurological divide.’
But I’m left wondering one thing. If I am human (and I am), and if other humans can’t see me as I am, what does this actually mean in terms of my embodied existence?
Why so difficult?
Cleary I’m struggling to identify a feeling. A feeling of being, and yet of not being – a lifelong sense of alienation and wonder(ing). At the weekend I momentarily toyed with the idea of being a replicant. And then thought about it in reverse. What if everyone else was a replicant in this warped narrative of othering? Hah, see how you like that!
Personal truth and authenticity seem to be at the heart of this – along with an uncanny sensation of a shift in time or space between us; a parallelism of embodied experience in which we can’t quite sync enough to grasp the nuance of the other.
And then I get it. No-body actually ‘gets’ anybody else (no matter how close they might feel, no matter how much or how little imagination they might possess). Surely all people really do is transpose their own experience onto others, period? If the embodied experience doesn’t match you have to try harder and ultimately take a leap of faith because you want to. (Tell me if I’m wrong.) I feel that the extraordinary writer Carson McCullers gives us a piercing window on this phenomenon in her debut novel, The Heart is a Lonely Hunter.
This goes for us all and – simply put – among autistic people there can be a much easier fit, and a higher chance of matching experience from which to form a bond. But it’s never a given.
You probably have to feel invested enough, and be willing to go to new places inside yourself to ‘get’ autism as a non-autistic person. You might even have to be prepared to lose your moorings (as autistic people have to among neurotypicals) in order to find the empathy g-spot?
Most people perhaps wouldn’t do this by choice. They might fear never getting back to themselves again (welcome to that one).
I don’t mean to say that there aren’t any neurotypical people who’re willing or able to do this, and do it while also holding on to their own boundaries (this last bit is very important). And god bless those who go for it and succeed. We love them.
But what I do think is that our daily efforts are largely a blank to most people, and the intelligence behind our multiple coping strategies is overlooked. All that’s often visible is the ‘getting things wrong’. Ingenuity, inventiveness, resilience and the sheer courage involved in managing our lives is an unseen entity, and indeed a valuable resource. Neurotypicals could learn as much from us as we are forced to from them.
But I’m beginning to feel it’s not my job to keep saying so ad infinitum. So I’m keeping schtum for a while. I’m not leaping about and waving banners, not until I can work my way through the sinking feeling that I need to try to be effective in other ways.
Ah, and I bet this is another staging post in the late diagnosis journey of becoming. In fact I’m almost willing to put money on it. At the very least I’d like a change of scenery from the hamster wheel.
I’ll still be working behind the scenes, but I’m good with quiet for now.