July 5, 2018 § 6 Comments
The title for this blog post is a quote which comes from an article published by Shape Arts called How to Get an Exhibition. It’s an article “adapted to suit disabled artists and sit alongside Shape’s own resources…”
I’ll quote a fuller excerpt,
“The art world is Social and I’m capitalising that because frankly you’re not getting anywhere making art in isolation. No-one is going to come knocking if no-one knows who you are. You have got to introduce yourself (and that won’t be welcome if you’re not a decent person), which brings me to…”
This is prefaced with advice about working cooperatively. Don’t be adversarial or a ‘user’, my term. It’s a wholesome tip, what can be so wrong? Well, consider the socially disabled. Yes – we do exist – though clearly we’re invisible to even wonderful disability arts organisations which are much beloved, like Shape.
So saddened and frustrated am I to see such output from a disability arts organisation that I’m moved to blog about it.
Autistic artists are unlikely to be ‘users’ or even adversarial – though our social behaviour might make us seem so because we are so easily misread. We are more likely to be trampled on by others using our ideas and making capital out of our social vulnerabilities than vice-versa.
The art world is Social – with a capital S – is a statement which tells you everything you need to know about about an environment which is excluding, at times toxic and frankly (to borrow the author’s tone) disabling for autistic artists.
There will of course be autistic artists out there making their work in isolation – that’s the point! It’s not necessarily a choice for us – though it is complicated.
It may be that some of us are without a network because this is what happens when you have a social disability. Another factor is that ‘isolation’ can be enabling on a creative level. Some of us don’t find collaborative working accessible and need ‘isolation’ of a certain kind to make our work. This can be usefully reframed as solitude – though our need for it can be unusual and profound.
It’s inappropriate to advise against isolation to a group who can’t help it – for whom it can be both a feature of creative life and/or a consequence of their disablement.
And not even the no-one will come knocking is the worst of this grisley finger wagging advice. Yes, we know. We’ve known this forever, thank you!
You have got to introduce yourself – gets right to the nub of things though. I’ve heard this before somewhere. The ‘get stuck in’ school of advice, which is about as useful as a kick in the teeth for those who live with levels of social anxiety often associated with social disability.
However, the worst is reserved for last.
I suspect there will be something truly sinister, about the quote marks around ‘decent person’ and the admonition about a lack of welcome, for the autistic reader. You have to unpack what this means and the assumptions buried within such a statement. ‘Decent person’ is here (I assume) someone who can perform neurological typicality (for want of a better phrase). A person who can show collaborative spirit and can demonstrate they are a team player. It means someone who can pass a neurotypical popularity test, which is essentially what most networking is about.
What if neurological challenge means you can’t remember names or faces, and can’t keep up with the alphas of this Social world. What if you can’t process interactions in the moment. The alphas shuffle according to criteria those with social disabilities often can’t fathom because they are whimsical and illogical, based on something we can’t see or touch. It is also the case that we often see too much. Where’s the advice about social ‘lying’?
Some of us can’t prove we’re ‘decent’ because the Social world disables us. So although it wasn’t intended that way, this is ableist and a worrying sign that autistic artists are still not visible in disability arts.
July 1, 2018 § 34 Comments
This post is about both ageing and masking. Masking can be a difficult subject as some autistics can’t mask their autism, and those of us who can often wish we didn’t have to, and yet we may depend on masking to get by. Masking overall is not really a choice though in some circumstances we can chose to unmask ourselves. We may also just be unmasked by circumstances – and this can be deeply confusing and humiliating. It is both a relative privilege and a survival strategy. Yet however important masking can be in mediating aspects of autistic challenge in neuro-normative spaces it is also pernicious in it’s effects on us.
Revealing autism and unmasking are not entirely the same thing in my view – and this is worth pointing out. One of the difficulties we face is that to talk about being autistic we must often use our masks and perform as neurotypicals. To ‘act autistic’ is another level of communication about who we are. Unmasking is a complex negotiation of self in relation to others which may need to take place over time and may never be a complete or finite entity.
Understanding and finding a balance in masking autism is a real challenge for me. I’d like to share aspects of my recent experiences. Please do feel free to comment – I’d love to know how other autistics manage this.
There’s been a huge amount for me to process lately. SO vast is the task of navigating the world as a relatively new autistic that at times I simply buffer. Some days I’m not exactly engaging with life – I’m beach-balling like my overstuffed laptop.
Someday soon I need to empty content. It’s reached that dangerous tipping point where the cursor acts up and jiggles uncontrollably. This is a sure sign of near laptop meltdown – I should delete or transfer as much as possible to an external hard drive.
And so it is with life. I’m clearing out cupboards – in the hope of making space to think more clearly and get through my days with more ease. In the area of clothing this feels vital. Less will be more surely? Garments that have lain around for years – high on promise and low on actual wearability – must go. I look at them with new eyes. They belong pre-diagnosis when I didn’t know myself. What versions of me hang therein? None I now recognise.
I put them in a bin bag ready for donation – crossing all my fingers. May they go to a good home! May their departure lighten my load! I want to stop all this damn buffering.
Just lately I’ve been coming up against my limitations in more tangible ways. The gaps in functioning provoked by some of my recent escapades have pushed me to my limits. This has been painful – more challenge in my life means facing my invisible disabilities head on. Adjustment is constant – there is no official support for my situation.
Also – I grow old.
I’m on a species of cusp so to speak. I’m in the run up to a brave new decade, and contemporary culture demands women declare each decade the new previous decade. We’re not allowed to age visibly without dismissal.
So as women we must join the race to be younger, more energetic, and ever more positive versions of ourselves than before if we don’t want to be deleted. If you’re a late diagnosed (masked) autistic woman it’s a double whammy as we’ve been invisible all along!
I simply feel old. This is desperately unfashionable, I do know this. I should be scaling mountains and learning to yodel! This is so never going to happen, in case of doubt.
As a woman of 25 I felt ancient too (at times). Being autistic makes for vast differences in perception and sensory experience – which is often plain exhausting at any age. I must remind myself that I may not always feel quite so compromised – I will eventually find some bounce back, I usually do.
But it’s the cross over in ageing with late diagnosed autism I’m running up against. My body is slower, and the gaps in functioning feel more solid somehow. I hit the wall ever sooner. My spoons simply do just run out.
How this relates to my newfound reluctance to ‘mask’ I don’t know, but the pain and humiliation around masking is greater since my diagnosis two years ago – I don’t want to mask anymore. Yet unmasking is not always practical or useful (let’s be honest here it’s not called privilege for nothing). I have so much left to do both creatively speaking and as a mother – all of which mean I must be out in the world.
I need a better strategy, but what?
In recent days I’ve rehearsed unmasking scenarios in my head for those brick wall moments. Unmasking on public transport for example (I now realise) requires a conversation. This is often beyond me in extremis and so I tend to push through.
At times can I barely keep my mask in place and deep sense of alienation haunts me during and after highly stressful situations. Revealing my autism might at least bring kindness and relief, I sometimes hope. Yet the risk that I’ll be met by miscomprehension and even cruelty (however casual) is great. Condescension, dismissal and denial are also common reactions. This is what makes masking a privilege.
It’s a negative feedback loop which can erode a person’s sense of self and self-worth, really it can.
This deep instinct to mask is brought about by fear. It’s an adaptation for social survival. So how exactly do we drop it?
Age should bring us wisdom passed down the generations.
But we’re both the lost and the pioneer generation – we have to work this out for ourselves. That’s tough – there’s no way round this.
I long to be kickass about masking, but this doesn’t really suit my personality. This would simply be another mask. As I write this I feel relief. One more pressure I can drop like a hot coal.
I want to end this post by focusing on the good stuff. We are making change happen as a community little by little.
Earlier this week I was met with the most extraordinary kindness in unmasking my autism to a new colleague – genuine dialogue can happen. Last week I also appeared on an exciting panel at Kent University, Autistic Women, Feminism and the Arts, with the most brilliant autistic women both masking and unmasked.
On an individual level for those who have masked to survive, masking, as I say in my introduction, is a daily negotiation. We shouldn’t underestimate the struggle this represents and the level of ignorance we face which often blocks us.
Campaigns to unmask ourselves are a wonderful thing, if this works for you. The potential for such dialogue to further our cause in the mainstream engenders hope in me. Such campaigns, at the very least, can rally us and strengthen us at both individual and community level. With luck it can open other minds to the challenges of being autistic via authentic voices.
But I want to say to those who may feel pressure and confusion after so very many years of masking – masking can be okay as a strategy. After a lifetime, you might not even know where masking begins and ends in your psyche. I myself am not sure about this. Habits and adaptations are etched into us over time.
Until we come up with something better masking is sometimes all we have.
Because I’m older I have to practice patience about wider change. It may not come in my lifetime but nothing will convince me that the neuro-revolution is not on its way.
May 16, 2018 § 28 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.
May 6, 2018 § Leave a comment
I don’t want to write too many words. I’d like my video to speak for itself. Mainly, I need Arts Council England to know that their bureaucratic processes, in current form, disable significant groups of autistic and neurodivergent artists.
This is a specific issue in my life – but I also want to make a more general point that bureaucracy physically hurts us.
I know autistics who succeed in making Arts Council applications – I also know many who are unable to contemplate beginning one. The argument often goes that “neurotypical” artists struggle with it too. Albeit true, (in the sense that it is a gruelling process of competition for limited resources which also requires ‘insider information’ to succeed) it is also an ableist thing to say because it minimises exactly how uneven the playing ground is for us as a group. Just because some of us push through doesn’t mean it is okay. The bar is high – but the bar is also structurally unfair.
I want also to say that those of us who do take on the beast can be harmed in the process. I think this is disabling.
I think the Arts Council should know.
May 1, 2018 § Leave a comment
This blog post has turned around in the writing – all because Tamsin Parker has a truly remarkable voice. The voices of autistic women, how they are appropriated and contained, is the theme which runs through my post.
What’s becomes clear in her case, I feel, is that the socially constrained female voice and the issues of ‘masking’ autism combine, making autism a feminist issue.
But learning about Tamsin’s horrific experience at the BFI on her 25th birthday yesterday, was the final straw after a difficult few days.
I’ll be honest, hearing about it has been one of the rawest moments since my autism diagnosis in March 2016.
I rarely talk about being a mum because my children (now young adults) haven’t wanted me to, but the sheer cruelty and injustice of this act pierced my mother heart.
Coincidentally, last week I joined an impromptu group of autistic women using the hash tag #AutisticMotherhood. I’m not a joiner, so this was quite an event in itself, but I felt my voice as an autistic women had been appropriated.
#AutisticMotherhood was born on Twitter in response to Kibo Production’s play about a cold autistic mother character (who it is now claimed by producers is not autistic but has post natal depression). We even have a website where two open letters to Kibo can now be viewed. The play was written by a man who is not autistic, and you can read my views on this in my last post.
It felt important to pin my colours to this cause, but I also ended up feeling tossed about and quite at sea as a result. I reached a low point.
Sinking my energy into #AutisticMotherhood coincided with this cruel attack on Tamsin, and kaboom!
It felt so close – and not only from the point of view of a mother. I can also laugh uncontrollably in public. When this happens my shoulders shake, I wheeze and snort and make a ‘spectacle’ of myself, as well as crying ‘too easily’ – my other party trick. Some of us are emotional and expressive, but I guess I ‘mask’ enough to get by – but this masking constrains me.
Because I am autistic I do also get things socially very wrong sometimes – despite best efforts. The other day someone ran away from me in the supermarket (!) Yes – quite literally, he ran. I thought that was quite rude and showed a distinct lack of social skill, to be honest. Perhaps he was scared of my autism, which I had told him about in an email.
But the cruelty of that scene at BFI runs on a loop in my brain. What cuts deep is the native intolerance shown, and the insistence of some audience members to their viewing rights above common decency. They seemed to find it perfectly acceptable to round on a vulnerable young woman, one man yelling an abusive sexist comment, and others applauding her ejection from the cinema.
The hounding of an unconstrained female voice (as well as ableism) is what I see.
What haunted me was that Tamsin might be alone after this ordeal, and I’m relieved that she was with her sister and was able to go home in a car with her mum.
I’m also doing the best I can as a mum – but honestly, sometimes the scale of intolerance in the world breaks my heart. We have such a long way to go on invisible disability.
But then Tamsin’s mum Lydia posted a film by Tamsin and her powerful voice gave me hope again. I love her energy, which won’t be contained. I love how she sees the world and what she has to say. Tamsin is a strong role model for young autistic women (and indeed for women of all ages and neurotype).
Tamsin deserves so much respect for her love of cinema and her talent in filmmaking. One way to make up for things BFI (if you’re listening) is to put on a screening of Tamsin’s work.
Tamsin, if you read this, I have a diagnosis of Asperger’s too (though I like to call myself autistic). I think Force of Habit is one of the best advocacy films I’ve seen and very inspiring. If people are unforgiving, like the man in your film, then I think they probably aren’t worth knowing (unless they can change their minds).
Thanks so much for reading xx
April 27, 2018 § 8 Comments
I’m breaking a rule by writing about a play I haven’t read or seen, called The Big Things, by Mike Heath, which has recently stirred unease among autistic people, autistic mothers in particular. The Big Things, is ostensibly about autistic motherhood but from what I hear this subject is never truly examined in the play.
Yes okay, I’m going on hearsay (from autistic women who’ve read the script and one who’s seen the play) but this is more than good enough for me. I feel I’ve given both playwright and production company (Kibo) more than enough of my time in the past few days.
Autistic motherhood, in contrast, is a subject I know intimately from the inside, unlike Mike Heath.
Mike Heath, and Kibo Productions have stumbled into a PR nightmare in taking on this subject (it seems) without sufficient knowledge or research. The real shocker for me is that this play should be Shortlisted for the BBC Alfred Bradley Bursary Award 2016. Culturally speaking, no-one in the room sees autistic women. Let alone do they see us as creatives who might want to (and do) write our own plays about ourselves.
But I think this play slipped through the net, as it were, because it’s not really about autistic motherhood (how could it be?) No – this play is about how frustrating a fictional neurotypical man finds it to have a relationship with an autism stereotype. She’s a cardboard cut-out, dude. No wonder….
I should explain that as an autistic mother my greatest fear about this play is that it could gain success. And that the portrayal of “Grace” (ironically named as she has no grace?) could develop the legs of a Rainman or a Christopher (Curious Incident in the Nightime) and go walk about. Such figures stick and we are landed with them, unable to shake them off for decades. I literally shudder at this thought.
I wouldn’t suggest that a neurotypical man should never write about autistic motherhood, for what is fiction if not the work of imagination?
But I admit I’m not keen on the notion of neurotypical men writing about autistic women at this point in our cultural emergence (for reasons of historic and systemic ableism and patriarchy). But if they must, at the very least they should do the homework (which means consulting actually autistic women who are mothers, and hiring us as sensitivity editors).
If they must, they should do right by us and avoid writing harmful stereotypes. But this sounds like a horrible play, which does exactly the opposite.
At one point in the heated Twitter debate things went a bit dark. Were some of us trying to force their creative to do something against his will, Kibo Tweeted, somewhat petulantly I thought. Er, NO.
Up until this point it had seemed they would do their utmost to put this living howler right. They’d seemed hapless and merely ignorant (although they had tweeted inaccurately that the National Autistic Society had read the script for them). No-one was calling out malicious intention (that I could see) or being in any way coercive – not at all. It’s my experience that autistic people rarely feel they have power in such situations – this is the whole point.
Somehow as a group we had overstepped the mark for Kibo, and trust was on the wane on both sides. This irony shouldn’t be lost.
A group conversation online can go in many directions, and meanings misunderstood. But we’re rightfully angry about The Big Things.
I wish Mike Heath had not had the sense of entitlement to write this play. He was, of course, free to write it – but no one said autistic mothers had to like it, or quieten down while others mop up the mess.
Autistics are a minority group who don’t have cultural representation (although we’re edging forward) – the point is that we don’t yet have a voice. The voice we’re presently conferred by others thus becomes crucial – each time. Each time someone who has a platform writes about us and gets it wrong we’re pushed back.
This is vital for autistic women who are mothers too. We have been even more overlooked as a demographic. We’ve been either unimagined (as not possible) or maligned (refrigerator mothers – autistic causation seeping from our frozen nipples to our unloved infants!)
I felt the shadow of Bruno Bettelheim in the descriptions I read of Grace by the autistic women who act as my first hand witnesses. Is it any wonder that this conversation is so uncomfortable for us all? It should be.
If you want to support the voices of autistic mothers, please read this marvellous open letter led by Katherine May. You can ask to be a signatory in support, and you don’t have to be an autistic mother to do so.
Thank you so much for reading this post.
April 15, 2018 § 10 Comments
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?
(NB. I have been told ACE rules don’t demand that we match our access costs, and that exemptions exist within the present system – but this is simply not reflected in the mixed messages ACE give to it’s funding interface users).
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 paste 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 the director. 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 keeps 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 received 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.