Get networked in! Autism and systemic ableism in the arts.

April 15, 2018 § 7 Comments

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Mrs Pepperpot to the Rescue

 

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.

 

 

 

 

 

 

 

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Riding the waves, my autism awareness week hack, part 1

March 27, 2018 § 5 Comments

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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.

 

 

 

Not a programme to do your ironing to! #Radio4

March 23, 2018 § 5 Comments

 

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It’s not a programme to do your ironing to, my producer, Anna Scott-Brown, warned me minutes before the transmission of, The Art of Now: Return to Catalonia (an Overtone Productions programme for BBC Radio 4), which you can listen to on iPlayer on the link above.

I’d spent the previous three days feeling like I was trapped in an elevator shaft with the lift about to drop on my head from the tension of waiting to hear it!

With such a short run up time I’d  thrown myself into the project and relied on hyperfocus to develop the creative concept and refine every detail needed to retrace my father’s exile journey from Spain to England in 1939, making creative responses along the way.

We finished our recording in Spain, and my part was over. Anna and (co-director) Adam Fowler, then toiled at the edit and sound design to craft the woolly mammoth of material we’d created into a 28 minute programme ( we generated so much material in fact that the editing software groaned, registered full, and would take no more!) I just couldn’t imagine how they would do it.

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During transmission I was transfixed. I honestly sat staring at the radio with my ears cocked like a spaniel – I really did – as a dazzling geology of sound whizzed about my ears seeming to stop time.

It is the most extraordinary radio programme I have ever heard – due entirely to Overtone Productions artistry. I’m incredibly proud to be part of it. It’s a rich, immersive, sophisticated listen – the imagery piles in from moment 1.

My extended family sat 60 miles away gathered around the radio, listening intently together as families once did. My teenage daughter surprised me by slinking onto the sofa unbidden to hear it.

Messages flooded in. Enhorabuena! The layering is really beautiful! Your voice sounds wonderful….

A poet watched  patches of sunlight dance on the wall which she said  looked exactly like the sound of my voice as she listened. She sent me a video – it really does.

The following day I heard from friends who’d toiled up the mountain of listening (like the exiles crossing the Pyrenees) to unpick the intricate soundscape. Hearing is not always a given we must remember, and in this case a husband lent his ears to transcribe it from iPlayer for his wife. An act of love and dedication (on so many levels) echoing the love which went into making this programme.

I’m immensely grateful, and somewhat in awe – I feel I’ve reach a summit. This was my dream job – an artist can ask for no more. To open up my soul on Radio 4 has been quite extraordinary  – to have shared this journey with Overtone Productions is even more precious.

The genius of their work is that in each listening (and I keep on listening) you hear more layers. It took 5 times for me to catch my own voice lowered and playing under the sound of me digging in the sand – ¡Buenos días, dictator! I intone…the title of my recent exhibition, which is so so resonant in this moment of my ritual.

Having murmured into a recorder almost every day and sent endless files through WeTransfer, I realise that few people will understand my work better than they. They’ve heard me talking down my demons on my walks around Oxford, and know that I have all my best thoughts in the shower. It has been a revelation to record myself – something which I will continue to do as it’s such a useful creative tool. I will miss talking to Anna though – she has been such a wonderfully encouraging and receptive creative companion.

If you haven’t heard the programme yet I urge you to give it a listen. An art piece in itself, it’s a portrait of creative reliance in the face of inherited trauma. This has so much to say to us in present times.

A great deal of the visual output from this project can be found on my website.

 

 

 

 

 

 

Confronting my fear

March 19, 2018 § 2 Comments

Enactment Argelès 4

This blog post was first published on the Overtone Productions website on March 2nd.

My journey to Catalonia with Overtone Productions for Radio 4’s The Art of Now has honestly been the trip of a lifetime. I set out with some trepidation (for the first time) to trace (in reverse) my father’s exile journey from Barcelona to England at the fall of Spain to the Franco dictatorship in 1939.

But I’m coming home with a deep sense of reconnection, and new insights into the profound value of a creative practice in confronting a most painful history, and I’ve been able to shine new light through some of the darkness.

Having carefully planned my artistic journey through the sites of two infamous French concentration camps of the period (Le Barcarès and Argelès-sur-Mer) with a stop-off at the Museu Memorial de l’Exili (La Jonquera) to make a personal donation to the archives, I was, nonetheless, anxious that my work could be met with hostility in some quarters.

Sonia Boue

The Catalan independence referendum of October 1st 2017 appeared to have heightened tensions in the region. As friends and contacts on the ground back then began to send me news and impressions (including video footage of police violence at the ballot box) I feared these horrifying scenes held echos of the Franco dictatorship, and I felt a new uncertainty. Since 2013 I have been creating work about the Spanish Civil War but I have never had the opportunity to show my work in Spain before. Whether I could do so now became a burning question.

Returning with the programme also involved breaking a family taboo, and a history of silencing through fear and trauma. Aspects of what followed feel a little dreamlike, bordering on the remarkable. I can’t wait to share some of my encounters in the broadcast.

Sonia Boue - Enactment Argeles

I learned that the memory of Civil War in Catalonia was never truly erased (because ‘the people’ remembered), and that there has indeed been a proud history of protest and resistance in the region. The somewhat infamous policy of ‘official amnesia’ has not been swallowed by the populace necessarily – though tensions about it remain, especially where Francoism lives on.

But to my delight, I was met with an overwhelming welcome for my project at each stage of the journey, including an invitation to exhibit and talk about my work from Queralt Solé at the history faculty in Barcelona University, which has opened up the possibility of a whole new creative dialogue.

Sonia Boue's exhibition

Making this programme has enabled me to find my voice in Catalonia, and to hear the multiple voices of all those wonderful friends old and new I met along the way.

Sonia Boue at Barcelona University - photo by Kayte Locke

My special thanks go to the Alsina family in Barcelona whose long and profound friendship to my family (dating from before the Civil War to the present day) inspires and sustains me. My deep gratitude also to Helena Buffery for her steadfast support and guidance on vital aspects of this project.

As I journey home I’m already longing to return once more to Catalonia.

www.soniaboue.co.uk

 The Art of Now: A Return to Catalonia is on BBC Radio 4 at 4pm on 19th March 2018.
An Overtone  Production by Anna Scott-Brown.

Strange Transmissions – taking my work to Spain.

February 16, 2018 § Leave a comment

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(Still from my new film called, With You, featuring my father José García Lora & the gardener’s son at the Old Prebendal House, Shipton-under-Wychwood.)

Life’s a bit full on at the moment, but in infinitely good and exciting ways. My work with Overtone Productions for the Radio 4 programme, The Art of Now: Return to Catalonia, continues apace and is all consuming, partly because we have such a short window in which to make it. It’s also a compelling piece of work to be making at this time of high tension and uncertainty in Catalonia.

I am loving working with Overtone who make this easy for me, and are infinitely encouraging about all the sound pieces I’m recording ahead of our trip to France and Spain next week. The process of recording myself is in itself fascinating – a new form to learn about and enjoy from behind the scenes.

Mainly, I find myself thrown headlong into an intensely personal creative exploration where family history, the recent conflicts in Catalonia, and the opportunity to extend (embody & flesh out) the visual language of my practice collide. I’ve been scared at times that this could get messy, and I still don’t quite know what my journey will bring, but I feel so well held by Overtone and the various people now supporting this project in Barcelona that I’m mostly reassured and have begun thinking about my work in terms of transmission and reception. Amid the fear engendered by buried trauma (a second generation inheritance called postmemory) there is a new sense of welcome which opens out possibility. This is deeply inspiring on the importance of welcome and receptivity in both cultural and human terms.

The title to a Nora Jones song – Strange Transmissions – has worked its way into my brain in relation to recent conversations with Dr Helena Buffery (probably only the title to this song is relevant).  Helena works with me on my father’s plays and together we try to make sense of his creative project in the context of Spanish exile. She has also facilitated the reception for my work in Barcelona. It’s immensely beneficial to the preparation to have a sense of arrival for the project once we hit Spain.

Intense processing has led me to what I hope will be a coherent outcome in terms of the art-making side of the programme. I now have a plan, and it’s a pretty tight one at that. With so few days on the road – traveling in quick succession through the camps of Frances at Argelès and Barcarès, over the border at La Jonquera and then on to Barcelona – I’ve needed to think this through in the finest of detail possible.

Last week we recorded the English leg of our journey at Shipton-under-Wychwood. It was a cold and soggy day with enough time spent outdoors to thoroughly soak our feet and test out our waterproofs – mine being newly acquired for the purposes of this journey. It was a good excuse to equip myself properly and has paid for itself already by enabling me to film on location and capture footage I’m incredibly pleased with. It couldn’t have gone better I feel, and rain added a perfect melancholy and depth to the work.

So I’ve created a new film to take with me to Spain called, With You – the still capture (shown above) has been taken over a transition. I’m excited by this effect and the way in which it says exactly what I want to convey about the layers of my project by superimposing one image over another.

Yesterday I cracked the piece for the final leg of my journey in a momentary flash of inspiration on acquiring a new and unexpected object. I can’t wait to share this with listeners to Radio 4. Tune in on the 19th March at 4pm and all will be revealed!

The Art of Now: A Return to Catalonia #Radio4

February 5, 2018 § 9 Comments

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(I’m taking a camera which can’t take pictures to document the erasure of this history). 

The Art of Now: A Return to Catalonia

BBC Radio 4
Transmission Date Monday, 19th March 2018, 4pm
Presented by Sonia Boué
Produced by Anna Scott-Brown

So I’m finally returning. I can’t help wondering what Abuela (grandma) would say?

I wish too that my father could know that I am going back to Catalonia, via the beaches of Barcarès and Argèles (where he was held in refugee interment camps), to retrace his exile journey to England in 1939.

At the age of 18, he, along with 500,000 other Spaniards, fled for his life across the border to France. I have spent the last five years building a body of work in response to this family history, and have also cast my net wider to encompass figures such as British artist and Spanish Civil War volunteer, Felicia Browne, and the exiled Spanish writer and broadcaster, Arturo Barea.

Now, I have been asked to make a programme for Radio 4 with Overtone Productions, and my question about taking my practice to Spain will in part be answered. I will be retracing my father’s footsteps and creating responses along the way. We have a very short timeframe to make this programme and so I’m thrown into sifting and planning (in ways I am very conscious the exiles couldn’t) the artistic side of my journey.

The job feels vast, and at times overwhelming in the time available – not helped by a brain which  likes to canter off in 10 directions at once. Reigning in and staying focused is the thing. Here is where my obsessive nature is hugely beneficial to my work. I dig in and apply myself to the detail.

My feel for the bigger picture is pure intuition – I trust I can make the stages of my journey join up by getting each stage right conceptually speaking. My work is made easier because I can draw on some existing pieces in my growing collection, but I will be making new responses and hoping to bring them all together by the end of the programme.

I’m brimming with gratitude to Overtone Productions for pitching this programme, and feel a weight of responsibility – this is a highly sensitive history. Also Lurking is the spectre of inherited trauma – as I probe more deeply into it I gain a firmer grasp on the terror through which this history was suppressed. I hear new information from my mother which confirms it and brings it closer.

I feel my father’s fear as though it were my own. As though it were live.

I conclude that it is. This is what we mean by the term, postmemory. Recent events in Catalonia serve to demonstrate how difficult Spanish history is, how tensions remain from the unresolved legacies of the Civil War.

I won’t really know how to respond until I get to the beach of Barcarès, or until I’m confronted with the entrance to my grandmother’s flat (which she left in 1975) in the Barceloneta. All I can do is plan and pack my suitcases full of artistic possibility.

Each morning I pinch myself anew. Somehow I’ve landed the job of my dreams.

 

Saturated – losing my mojo, & the question of embodied existence as an autistic person.

January 23, 2018 § 20 Comments

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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.

halfling

undead

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.   

 

 

 

 

 

 

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