What does inclusion look like?

November 22, 2018 § 2 Comments

Detail from a work in progress for the Neither Use Nor Ornament project.

In my day job I am a visual artist with my own practice, but I’m also a community artist, mentor, trainer, and consultant. I work on various community arts projects as a freelancer, and I also lead my own project over on The Museum for Object Research.

I’m writing to share some of my findings after three months of working towards an inclusive Arts Council England funded project, where autistic and non-autistic artists will  exhibit their work together (in March/February 2019 in Oxford). So there’s still a way to go. Our project title is, Neither Use Nor Ornament, or #NUNO for short.

It began with the grand idea to bring together two distinct networks, one predating the other. The longer standing group of non-autistic artists were to show their work in an exhibition that had already been planned. The newer group of autistic artists would create an events programme to run concurrently, thereby creating a distinct but equal platform while allowing for a cross-pollination of ideas and influences.

In my minds eye – the group show appeared as a fixed point at the core of the project and  the events programme whizzed around it like a Catherine wheel! I liked thinking about the dynamic interdependence of each element as a metaphor. Could this be a new model in the making?

Audiences would certainly gain a sense of contrast – and when we began the project, the two networks were indeed quite separate, their only real point of intersection being me. But would it make any sense beyond my own imagination, and would this represent genuine inclusion? As a visual artist especially I need to ask myself, what does inclusion look like?

The project (in a nutshell) is really about one person’s professional journey towards congruence after a late diagnosis of autism, and their (my) greater commitment to journeying in company for the benefit of a wider group. My project is about making change happen for some of the artists involved, it also seeks to inform arts organisations.  Challenging audience perception is important to us though our spirit is not confrontational.

Our first model was what you might call high on visibility.  At this point, I didn’t know any better.

High vis ( or ‘Day-Glo diversity’!) could meet with approval from a body like Arts Council England, who we know need to be seen to be doing better on this score.

But as my project progresses I’m increasingly wary of the Day-Glo approach, which you see quite a lot in the arts right now. Genuine work is taking place in some cases but I’m disquieted by this trend in diversity signalling.

Inclusion should be an every day thing, rather than exceptional.

A hegemonic insistence on ‘normality’ conditions us to believe that signalling ‘difference’ in highly visible ways challenges perceptions and therefore creates an instance of inclusion. There are times when this works precisely because our assumptions about who can be a player in society are so rigid.

But this strategy of ‘watching’ difference and ‘noticing’ it (as inspirational often) implies a norm from which ‘difference’ is discernible. This is hidden ‘centring’ and we must tear off the fetid blinkers of normality conditioning to see it.

Losing that fixed point, ditching that norm, and embracing diversity within humanity as the default setting would have us up in arms at the inequities of our very biased everyday assumptions.

At this point I refer back to the wisdom of an autistic child I knew, whose logical insistence that if we’re all different (as we are) then nobody is special when it comes to educational need (or anything else for that matter).

Ghettoisation (in the name of inclusion) within mainstream education can definitely be a thing – and it has marked this young person – as a teenager their instinct for survival prompted them to ditch all visible support. Not wanting to appear ‘different’ (because it so stigmatised them) tells you everything you need to know about being singled out for ‘special’ attention in ‘mainstream’ education.

Obviously school pupils turn into adults. Some will go on to wield power and be the decision makers of the future. What will inclusion mean to them? What does inclusion look like?

Some of them will also buy lottery tickets – an important source of Arts Council England funding streams. Therefore (if current systems remain) some of these pupils will go on to fund  projects like mine. Their adult counterparts of today have indeed funded my project, and ideally they could be among our audiences too. 

My project is an attempt to reach out across these invisible fault lines, but the scales have fallen from my eyes. My Catherine wheel was never going to take off, I was in thrall to a ‘neurotypical’ hegemony called ‘normality’.

As our work has gone on, I’ve listened to the artists on my project and absorbed the effects of high visibility on each one of them – and not all of them want it. Creative practice may seem like a ‘safe zone’ for the kind of self expression which extends to autistic unmasking – but how safe is it really? The problem with gaining a professional platform is precisely that you can be seen. Irony!

And where invisible disability is concerned (such as autism) – some of us have been conditioned to mask our difference in order to survive – stigma and discrimination threaten if we show ourselves. 

Art practices do not exist in a vacuum and art alone cannot dissolve ableism – we’ve needed to get real about this. We don’t chose to use masking strategies, they occur as an  adaptation.  I know that it’s a relative privilege to mask, not all of us can do this, but for those who can it is a right. 

Yet increasingly privacy is being eroded – we are encouraged to share professional profiles on the very social media that friends, families and colleagues use. It is now almost impossible to control personal information which forms any part of a public persona. Very recently this happened to me.

The funny look at the non-autism related exhibition opening. I experienced it only the other day. Oh, you’re Sonia Boué. My ‘fame’ in this instance was an autistic person not an artist. A googely-eyed stare is not the end of the world but it’s not a great look. I’ve learned to brush it off, but that’s not the point. Invisible disability can demand a calculation at each and every turn. It’s exhausting and sometimes the cause of great anxiety.

How much of myself do I show? Where are my safe zones? How often must I pretend and wait for my unmasking?  

Mainly we must ask ourselves, what will it cost me? Will it cost me my job, if I have one? Will it affect my mental health?

Will I be bullied or abused?

And here, of course, my heart bleeds for the autistics who cannot hide. The point is that no-one should have to face this. 

But for me this is one reason why an ideal model of inclusive practice comes without a whizz and a bang. Some of us need to mask our identities while gaining in rightful professional development. 

In any case, I wonder if great inclusive practice is something you can’t necessarily see!

Increasingly, I think this could be a truth to live by. Not only is inclusive practice potentially a quieter, more careful and considered game than I’d imagined, but the ultimate goal is that we genuinely don’t see ‘difference’ because we’re all included equally.

So it isn’t so much about what you see that counts. What matters is the activity that goes on behind the scenes to make a piece of work happen in a manner that’s ethical and beneficial to all.

As I move forward with my project I find that my ideas are shifting.

Our new model is still forming, and the much longed for cross pollination of ideas and influences is taking place. I’m pretty sure I haven’t always got this right, but the learning curve gives a spectacular view. I have a brilliant team and the most wonderful artists on board. The biggest change for me is that I no longer see my project as being one of two parts. Probably that’s what inclusion looks like. 

I’m grateful for ongoing conversations with the Arts at the Old Fire Station & Crisis Skylight partnership in Oxford, and with my mentor Miranda Millward, and with Thomas Procter-Legg Headteacher of Iffley Academy in Oxford, in informing aspects of my thinking about inclusive practice.  

I’m also grateful to Alastair Somerville of Acuity Design for his thinking on normality, in particular his latest writing on Building a normal world.

 

 

 

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I am an artist. I am also an autistic person. I live in sensory peril.

October 28, 2018 § 13 Comments

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I am an artist. I am also an autistic person.

The other day someone rudely crashed into my Twitter timeline expecting me to embrace a sudden urge to include me in a conversation about their work on embodied experience and the sensory world in a wholly unrelated context. I won’t say more as I’m not into identifying people, but the stall set out in just one Tweet was honestly not in my area. Not even close.

It’s a good example of a growing phenomena of people wanting some of the good stuff, ie the benefits of authentic autistic insight, but chasing like puppies at the first ball in sight.  Perhaps predictably (and with equal speed) they crashed out again when I made clear my inability to speak to their area of interest. Better to be honest. It’s okay – social mistakes emanate from both sides, (though it’s time to admit to this true fact).

What crashed into my timeline that day was privilege and false equivalence. The sensory world and our survival in it is not a drill for autistic people. So please don’t come to me with your teaching tools and professional insights. This is mere hobbyism in comparison.

You see I’m deeply interested in sensory survival, because sensory stress disables and ultimately kills autistic people. I’m not being sniffy if I don’t want to play with you, but please understand that I’m just not your go to generic autistic. I’m a professional artist trying to survive and improve conditions for late diagnosed autistics and for future generations too.

I am an artist. I am also an autistic person.

I like to say that I’m an autistic professional, not a ‘professional autistic’ – and I say this with no disrespect to those autistics who do consider themselves professionals in the area of autism first and foremost. I’m incredibly grateful to them for their work – but this isn’t my identity.

I am an artist. I am also an autistic person.

The sensory torture of a hospital environment became my reality a couple of weeks ago, and I’ve been forced to reflect how much activity must be sacrificed to manage sensory stress in my life.

It’s been a tough lesson, and I’ve been made aware of my unusual level of privilege with regard to sensory stress at work.  In fact – without my realising it consciously – my working life is organised around sensory stress.  I’ve compensated for it without even knowing it. I work freelance, and increasingly I work from the comfort of home.

Hospital was only a series of day visits to support my nonagenarian mother. BUT, as I imagined my own hospital stay, or working in such conditions, I felt the scales rapidly fall from my eyes. Here is a flavour of my long visiting hours and the level of challenge such conditions can imply.

Another layer of the autistic onion peeled away as I clung desperately to my composure under the cruel lighting of a small shared hospital ward.

Myriad whirls and bleeps monitored patients, during endless hours of uncertainty – in a vacuum of information – as staff in varying shades of uniform darted like fishes, eyes down. I was in foreign waters.

Hierarchies of need, codes of conduct, signs and symbols – all had to be absorbed – and so the decoding began. I knew I must measure each interaction carefully. Life and death hung in the air – I am busy, I am busy, the staff blared silently. How to signal that I posed no threat? How to soothe and inch my way towards the person inside the uniform? I know, I KNOW, I wanted to say. I will only take a second of your time!

It was a long game of observation over many hours. Snatches of information – disjointed – because it takes many parts to care on such a scale not all of which connect. Time, so much time…

Sudden changes. My mother was moved at dawn, a wash bag and reading glasses left behind.  A new scene – entire geographies to absorb on my arrival the next day. A ward of four women in varying states of peril. The layout is key – architecture and uniform colour signals who’s in charge, and who I must woo. Judgements are quickly made, but I am slow.

And now I am in it once more. Reliving it.

The vertigo sets in. Tinnitus too. The lighting drills into me and I fight hard to deflect it – I have along day ahead. A pitiful curtain shields a terminally ill woman as she retches up the awful hospital Friday fish lunch in the bed next to my mother’s. She is two hours at her labour, and her family rush back and forth with cardboard bowls. Can no-one do anything? She needs a private room.

My mother is quite deaf and I encourage her to take her hearing aids off.  Television now costs a bomb in hospitals and so the distraction of daytime TV is lost as no-one bothers. Ghost TVs perch on brackets above every bed. Heartlessly we do the crosswords my mother loves. She is losing heart and fearful that she will never leave this place. I’m desperate to keep her spirits up.

Later I encounter the woman’s son at the nursing station.

Your poor mother, I’m so sorry we did the crossword while she was so unwell. It had felt callous and uncaring, but what to do? You were right to distract your mother, he said kindly. We exchanged stories, which somehow led to a shared history of watching the 1970s TV series Crossroads, famed for its turgid scripts and wobbly sets. It was equally adored and ridiculed in its time. We managed a laugh, but his mother was dying.

This was beautiful and terrible. I felt intensely connected.

Hospital time is not the same as in the outside world. To enter is to surrender your agency to both the care and will of others, and to a system. That system is housed in the kind of environment that I’m sure no-one likes, but has people like me scratching at the walls to get out.

There were screamers in that long corridor of rooms and wards. Generally the screamers got their own room. I’d be a screamer for sure.

On my third day of visiting I checked out at 9pm, drove to my mother’s house in a complete daze, and resolutely left the lights off. I didn’t want any food. I couldn’t swallow. I couldn’t speak. I ignored my dear sibling and their family and went to bed in the spare room fully clothed, jabbering to myself, it’s just a meat factory…. When my husband rang me all I could do was bark like an angry dog. It’s often the person you trust the most who feels the brunt of your sensory distress.

I am an artist. I am also an autistic person. I live in sensory peril.

This is my admission to myself and to the world. Mainly, I manage my life, I am happy and I am loved. But it is very hard indeed when I am out of my bubble.

I have had many accidents in my life, falling off my bike on a major roundabout is the only one I feel comfortable sharing. Having witnessed several cyclist fatalities in Oxford city I now don’t cycle because I know my physical limitations. Accidents of this kind are due either to a sudden onset of vertigo or sensory overload.

This is something I wish all hobbyists to understand. I’m not hostile and I’m not angry. I’m just busy trying to survive.

 

 

 

 

 

 

 

 

Sanctuary – finding a place of safety online #actuallyautistic

September 13, 2018 § 6 Comments

 

IMG_4621

Photograph taken at Magdalen Road Studios with an art piece by Cristina Renfijo.

I love this blog space. It gives me room to stretch out and explore ideas I wouldn’t otherwise express. Ideas float about and when I’m ready I draw them in and knead them into shape on these pages.

I’ve written many blogs posts since I began The Other Side, and I’m immensely grateful to all of you who’ve kept me company along the way. So many voices, so much chatter – it’s a privilege to have your ear.

I want for a moment to consider the impact of social media on my life, and perhaps this will resonate. Though equally I expect I’ll get some flack for what I’m about to say. Autistic Twitter is a wonderful thing, but there’s a toxic underbelly to the platform which infects us all and enables hostility.

Some days I mainline Twitter – it is my ‘stim’ when I’m overloaded, it’s also been a huge support to me as an autistic person and in my art practice. Though I go through periods where I lose my Twitter voice, it’s been a good way to stay connected. Currently I’m finding it hard to speak.

Since 2011 I’ve enjoyed scrolling my timeline and remember such warm early conversations about autism and art. Twitter back then was like a gentle parlour game; we remembered to thank each other for mentions and when Friday came along we’d regularly break out the #ff’s. All that feels so very long ago. So much has changed.

There are still so many lovely people out there; good friendships and lasting connections, but the other day I saw an exchange that kind of broke me. There’ve always been scraps on Twitter. Autism has forever (it seems) been bitterly contested but we seem to have crossed a line, and this one threw me. Perhaps the effect is cumulative?

Or am I now at another point in the evolution of my autistic self? I know of other ‘battle weary’ autistics. Perhaps this is a thing.

It doesn’t really matter what the ‘ding dong’ was about now that I think about it (not that I’m belittling either side of the argument). It’s more to do with the shit we give one another online when we disagree. Two autistic people pitched against each other, sparks catching as quickly as tinder as their sensitivities collided. Sudden enemies – two people I’ve followed and enjoyed hearing from.

Suddenly I felt appalled. What have we become? Why can’t we just talk things through? I know it’s all way more complex than this, but this feels toxic, pervasive, infectious.

I’ll come back to a certain kind of advocacy when I’ve figured this out, but for now I’m done. Twitter isn’t the forum it once was.

We seem to use it to bash each other over the head, and I’m just not up for that.

I want to withdraw to a place of nuance and conversation. But that’s me wanting a lot. I’ll spend less time scrolling.

This blog feels like the place to be right now. I can be quiet. I can think my own thoughts more clearly. But when I think about the need for sanctuary my heart stops.

In my minds eye, the paintings of a talented young woman, who’s found sanctuary in the UK from a war torn country, suddenly appear.

I am both pulled about by my own privilege, and afraid of repressive impulses in humans.

If you follow my art practice you’ll know that I have good reason to be.

http://www.soniaboue.co.uk

 

 

 

 

 

 

 

 

 

 

 

The art world is Social

July 5, 2018 § 7 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.

Autism, masking and ageing. A personal view.

July 1, 2018 § 41 Comments

 

Sonia Sketchng for Spirit of Beehive

Recently at work in my studio – exploring images of childhood in film.

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.

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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.

 

 

 

 

Not thinking in pictures; autism and a possible sub-diagnosis of aphantasia.

May 16, 2018 § 30 Comments

 

Fragementation 2

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.

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Portal: disabling bureaucracy #ActuallyAutistic

May 6, 2018 § Leave a comment

 

Portal 10I 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.

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