Congruence in the making – how to live autistically in a socially hostile world?

A blog post on autistic masking, the benefits of self-knowledge, and achieving congruence. 

There are many things this blog post ‘should’ be, which it isn’t, and I’m aware of the unappealing nature of beginning with ‘failure’, but this is where I must start.

As autistics, god knows, we’re used to that! Those of us late discovered autistics (credit to Annette Foster for this wonderful alternative to the term diagnosis)  have decades of social ‘failure’ tucked (not so neatly) under our belts. Though as I write this I begin to feel that the word exclusion works just as well as failure, if not better.

Curiously, one way to be ‘included’ for autistics is to mask our autism and play an elaborate game of pretend.

Those of us who could have learned to mask, which is a survival mechanism, using observation and imitation to camouflage our difference. The effect of this in the short term is social survival (going under the radar of bullies, and avoiding humiliation and derision), but in the longer term we can experience serious identity confusion though masking. The pressure to mask can lead to a fragmentation of that all-important sense of self, which I believe all humans need to live happy and fulfilled lives. Many of us probably retain a powerful core identity (which at different times and in different contexts must be pushed underground to survive) and that’s possibly why we often have a rich imaginary lives, enabling us to ‘compensate’ for all the masking to some extent.

For non-autistics, the thing to remember is that often masking is not a conscious choice, it can therefore be hard to uncover it in ourselves. Before my discovery, I experienced it as a force beyond my ken or control, with a good dose of shame attached to it. Why couldn’t I get a grip and just be me?

Yet although it’s so often involuntary or indeed forced on us, it can be so deeply embedded in our personalities that approaching the question of the ‘authentic self’ (a flawed concept in itself) can’t be separated from an element of masking. All humans mask to an extent (the social carapace as my longtime therapist used to call it), but autistic masking is of a different order. I believe this is due to the extreme effort it can take to sustain it, as well as the consequences on our personal development and safety.  Some of us get trapped in relationships and situations which are abusive or toxic because we’re masking our true needs and identities, and don’t know how to stop. Potentially, there’s a huge amount of fear, anxiety and danger involved.

My own impression, before my discovery of autism, was of being surrounded by people who had a curious sense of purpose and admirably stable identities, while I blew with the wind – literally taking on the characteristics of those around me. In order to shed them off I craved significant time alone – I now see – to ‘get back to myself’. ‘Myself’ needed recovery time to allow these other personalities to ebb away. Somehow they seemed more alive than I, and a cacophony of voices, astonishingly accomplished phrases, and carefully coordinated gestures coursed through my veins like a wrong blood type transfusion. I was often enchanted by their glamour and tortured by endless false comparison. These days the wrong blood transfusion experience is a curious memory. I’ve strangled this malady at source. They do say knowledge is power, and I can mainly chose my activities (an acknowledged privilege) and adapt to my needs, so that recovery time doesn’t dominate my days.

Imitation is still the font of all my learning. If I spend time with you I will quickly pick up traces of your accent, mannerisms and inflections – it means I like you, but I experience this in a less invasive way these days. I know who I am, and I don’t have to inhabit your every way to know you, but I will joyfully observe (notice in detail!) and enjoy the you-ness of you. I’ve got to know the many forms of my masking, and I understand that you mask too (I sense it, and always did if I’m honest) – but there are moments when our beings touch with the lightest of butterfly kisses, and it’s real.

I want to say that I’ve learnt to mask more smoothly since my discovery – as though I’m now a more experienced driver, who doesn’t crunch the gears so often, though (of course) I can still find myself on a rough road at times.

These thoughts coalesced in my mind as I listened, in particular, to Will Mandy and Catriona Stewart present at #InsideOutAutism, in quick succession. The impact of masking on our mental health, and the benefits of finding ourselves in community and through making, impressed themselves on me in new ways. The importance of congruence in my own life journey came to mind.

It wasn’t until I was home again and took off my handmade brooch (pictured above) that I made the connection between the powerful congruence I felt at #InsideOutAutism and wearing it on both days. I’m still processing why this act of making and wearing felt significant. I’ve never been one to wear text on my body in any form, perhaps because my identity has been at times uncertain and under siege.

But my self-fashioned brooch was different.  Here was an artefact, crafted over time and without conscious purpose, redolent of my journey as an autistic woman in reclaiming the language used about me, and my people. So antiquated is the text that I am unfamiliar with some of the words, and it acts as a curio, or something I could have inherited. I feel I have. It holds a familial feeling, and when I peer at its loveliness I hear the ancestral whisper – we were once like you. If an object can be joyful and witty, it has those qualities. Have you ever bounced on a trampoline? My brooch is the rebound which tosses your heart in the air. It gives me abnormous joy. It trumpets confidence. That zing-a-ling feeling that I’m A-okay.

So I was delighted to learn through Catriona, that an artist called Lou McGill has been making the most gorgeous Freedom is fragile pendants and brooches

I’m moved to think there is something significant afoot in the making and wearing of these powerful almost talismanic objects, which I’d like to explore. Watch this space!

With special thanks to Susie Bass, Annette Foster, Dr. Kate Fox, Dr. Catriona Stewart, and Dr. Will Mandy for inspiring conversations, poetry, and presentations at the recent #InsideOutAutism conference organised by Prof. Nicola Shaughnessy and the Playing A/Part research team. 

Masking and caring – an #actuallyautistic perspective.

I’m currently adapting to a new situation, which for some autistic people can be tough to handle. The need for time in which to integrate patterns and routines is not something I’d identified before my diagnosis of autism in 2016.

Now that I know about it I can follow the ups and downs of what I will l call my wrong-footings like the contours of a map. I’m almost in sync with my own discomfort (gasps from the gallery!) which is not supposed to be that common. Isn’t autism a ‘being out of sync’ thing? In some ways yes…

Yet, I’m not where I was pre-diagnosis, which is why I’m keen on identifying as autistic.  It helps me manage life in ways which are beneficial. Building a set of strategies  is key, I feel.

I’m suddenly part-time caring for my mum who is 93, and after a long lifetime of coping, is suddenly frail and in need of 24/7 care. It began with a punishing two week stay in hospital. My sister and I took shifts and made sure she was never unattended even at nighttime.

Autism made this a challenging job in some ways, but it also enabled me to maintain my focus on mum. I understood that I could tackle the rigours of a large and busy ward with its bright lights, constant noise, high social demands and substantial emotional labour, if I established routines and rituals. Two huge pluses were that the ward ran to a discernible daily routine, and that there were plenty of rules (these were variable according to staff but they were readable and a transgression could be decoded and added to my database).

My shifts were often 24 hours +. During each shift I travelled the same routes in and out of hospital carefully noting the landmarks until they formed part of  my inner landscape. I ate the same food every day, which I bought from the limited outlets on the hospital site. Creating familiarity and limiting choices spared my cognitive load and lowered anxiety levels.

An early moment of crisis came with a sudden change of location for mum. Without warning, on the third day of her admission a porter arrived and she was moved from the clinical decision unit (CDU) to a main ward in another building entirely. In addition to the new map I would need to input, we had shifted from a diagnostic ward of four women (CDU), to an individual side room on CDU, and now on to a ward with fourteen beds.

This all meant progress in medical terms but it had an impact on my ability to cope. I began badly on this ward due to wrong-footing. Give me no preparation time, change my environment, make that environment densely peopled (with no privacy) and I will be ‘flustered’.  Communication breakdown followed.

I’m glad it did. A delirious person in their 90s can’t advocate for themselves, and many physiological changes take place which can affect the ability to carry out basic bodily functions in an orderly fashion. Arriving on an elderly ward where staff don’t know your previous baseline functioning, and where these symptoms can be confused with dementia, can lead to conflict about how best to care for them.

Mum had been admitted with a urinary tract infection (UTI) and was finally on IV antibiotics. On our first night on this ward there was a moment at 4am, (having spent the night asking for bedpans a regular intervals, and trying to keep mum from falling out of bed) when I found myself on the sharp end of an auxiliary nurse’s tongue. I got a bollocking for want of a better word. Unbelievably (to me), I was told I was upsetting my mum and making her anxious, and that this was prompting her frequent urination.

It turned out that auxiliary night staff didn’t know she had a UTI (and significantly I didn’t know that they didn’t know!) I tried to explain that I didn’t know the rules of the ward yet, which seemed to be very different to the CDU, where it was okay to use the call button to ask for bedpans. As it happened, shifts differed. I quickly learned to update staff on mum’s current status, and to ask how we would handle toileting needs in the night with each incoming team. Communication and planning made all the difference.

This moment was signifiant. It could have been the moment of my unmasking. I seriously considered it, as I have sometimes done before in extremis. But I stood my ground – though I know that I looked horrified (I can tell when my face freezes and I openly stare at someone in disbelief). I have a very expressive face – which can get me into trouble! In the end I asked the nurse to leave me alone.  This felt appropriately assertive.

We subsequently patched things up and became best mates. I liked and admired her immensely, she was incredibly kind but had misread me. In turn I discovered her acute stress about the very real possibility of having to work a night shift alone the following evening (eventually a second nurse was found). The turning point came when I uttered a foul expletive that this could even be a thing. We were on the same side – pro NHS and anti cuts to frontline services.

There followed a conversation with the ward sister, who asked me if I was unhappy with the care on the ward. Together we unpicked events, and I stressed how appreciative I was of her staff, but that there had been a problem of communication.  I could have mentioned that I am autistic and need clear consistent communication. Again, I held back. Would this be useful when the misunderstanding was on both sides, and that staff had lacked crucial information? This was nothing to do with my autism.

I figured clarity would be important for any family member supporting their loved one in hospital, and nothing about the environment could be changed for me. Nurses were stretched beyond capacity, and my needs in this instance could be managed by me (my hyper focus and my myriad routines and rituals).

Significantly, I felt that staff would view me differently if I disclosed – and I needed to become part of the team somehow (and I did). If we were to get mum out in one piece, I had to mask-up. Due to systemic ableism I didn’t trust my unmasking wouldn’t create bias or prejudice against me and count against my ability to report accurately on my mother’s progress. As it happened, twice my pattern recognition skills proved vital to mum’s treatment. I don’t believe that I am wrong in thinking I would be taken less seriously, and where life and death were concerned I wasn’t prepared to do the research to find out.

I find that masking continues to be required beyond hospital, and in my care of my mum at home I’m navigating the boundaries of my masking even further.

I’m part of a growing team of carers as we get to experience a post hospital service which is on offer for six weeks in my mum’s local area. This has been fast-moving, as there is a window of time to claim it. All of this is so welcome but requires adjustment. The landscape changes, and it changes again.

The greatest change is in my time and my location. A split week is proving hard to adapt to, and this experience has felt what I imagine a small but significant house fire to be. I’ve lost a month and am slowly piecing together new routines and rituals. Forgive me if I owe you an email or a piece of work! I’m getting there.

In this piece I may have equated masking with ‘coping’, but I don’t quite mean it this way. I also seem to imply that if my autistic needs are met I can mask more easily, and that that’s a desirable state of affairs. I feel this may be true but am not advocating it for others. I’m just exploring what happened to me and I’m keen to ask questions of myself.

What I know I do have is a complex relationship with masking, which I want to be honest (and hopefully nuanced) about. Stigma exists, often we don’t have a choice (those of us who’ve learned masking as an adaptation).  For myself as a bilingual person, I have come to think of masking as a bilingualism, wrought by the necessity of living between worlds with different cultural norms.

I hope to write more about masking and caring as my situation evolves. I find it shocking to think that in a public healthcare setting I didn’t feel safe to unmask my autism. I didn’t feel confident that staff would have received sufficient training to accept my competence once unmasked.

 

 

 

 

Out of office reply, Ole!

I’m out of office and in a new country, but I’m not on holiday.

This is because I’m helping care for my 93 year old mother who needs 24/7 at home, after a sudden acute infection and a two week hospital stay. My sister and I kept a constant vigil at her bedside and her recovery has exceeded expectations. 

Caring has taken over for now. Everything’s been on hold, but I’m inching my way back to elements of my previous existence. Life took a turn, something happened (as they say) and I don’t quite feel the same about anything. 

Hospital life is a parallel universe – you both live on the edge of your nerves and wade through treacle. There’s an airless tension to waiting for (and advocating for)  wellness within a vast institution, and to observing extreme ill health at extremely close quarters. It makes you think (a cliche of course). 

BBC Radio 4 Desert Island Discs kept me going through the quieter night shifts, and also settled me on my nights off. I could just about post to Twitter and Instagram on occasion, but all I could really think about was getting mum through it. Hyper-focus enabled me to keep going despite exhaustion, anxiety, and sensory stress. Autism was helpful in this situation (despite extreme challenge).  

My art practice focuses on objects, and now that we’re out of hospital I can find moments in the day to touch base with it a little. I’m indulging a growing obsession with an intriguing thimble I bought online just before everything kicked off. My husband brought it for me one visiting day, tucked among my spare clothes in a small suitcase. Emerging jewell-like from it’s cardboard tube, it seemed impossibly exotic and evocative – speaking to me of my other life – amidst the wreckage of the elderly ward.

So I’m now on the trail of this thimble, and have found that it is one of a set of six. Why they have been inscribed with Spain 1937 is of great interest to me. I need to find out what occasion they were made for. 

By great luck I’ve managed to find a seller who has the remaining five thimbles (of course I snapped them up), and one set that was sold only three days ago. My only clue is Marin Spain in the listing that was sold (for which there was a box). 

The two current leads pursued are a suggestion that the thimbles could have been made as souvenirs for the famous Paris Expo of 1937 (for which Picasso created his seminal work Guernica), or that they could relate to Marin Chiclana dolls (as each thimble seems to feature a flamenco dancer). But, if they are Marin Chiclana related, why the inscription Spain 1937? 

Is it possible that Marin Chiclana dolls were featured on these thimbles for the 1937 Paris Expo? 

Another possibility suggested to me is the occasion of the antifascist Second International Writers Congress in Defence of Culture (1937), with the Paris Expo being more likely. 

Whatever the case may be (including possibilities not yet touched on) the date, 1937, and country, Spain, make these thimbles significant and probably politicised objects. 

A curious symmetry of circumstance means that I have to wait a little longer for my thimbles to arrive, the seller has been suddenly called away from home to care for their mother…

 

Where is the love? A report from an NHS hospital ward.

I’m writing in snatches. This blog post is a report from the field. It’s 2019 and my 92 year old mum is currently an in-patient at a major National Health Service (NHS) hospital in the UK.

My sibling and I are taking it in turns (with some overlap) to stay with our mother 24/7. She’s way too precious (and currently too fragile) to bounce around in a system that is stretched almost to breaking point – and I must add here that it has been stretched quite purposely so. It’s impossible to write this post without reference to the Conservative Party’s political strategy to destroy the NHS, our precious universal cradle to grave promise to all.

Democratic, life giving and life saving, the NHS has never been perfect but as long as I’ve been alive it has always been there – and it has been free at point of care. It seems the NHS is currently starved and living off reserves.

I’ve learned a huge amount in the space of a ten days. I now know that a simple urine infection can topple a nonagenarian, and that delirium can rapidly set in and thenceforth remain a major risk. Mum has been brought back from a serious brink but has yet to recover. Recovery will take quite some time and take a great deal of care to sustain it. We’re in new waters.

It’s been tricky to process. Especially so when caring has become a full time job. Finding time to manage all the accompanying emotions is difficult, and I’ve been coping by keeping on top of all things practical and adding some extra elasticity to the overstretched ward. I focus on never failing to thank staff for each act of care (and I am sincere in this devotion). I’m good at thinking about how stressful this job is for staff – and this takes away from focusing on how stressful it is for me.

I’ve gradually absorbed and mediated the shock of being suddenly wrenched from my life in Oxford into this new all encompassing life of wraparound care. I observe myself developing myriad new routines. I have no choice, and I wouldn’t have it any other way, though I can see that we are a rarity my sibling and I. We are very lucky that we can take the time to do this 24/7, and that we are of one mind that this is what we should do. Without us there would be no one to make sure mum is properly hydrated and that she eats the meals set in front of her. We couldn’t be sure that she would stay safely in bed and is at risk of falling. There are simply not enough eyes and hands to keep the level of micro vigilance required to keep her optimally well or to stop her from sliding into further infirmity. This is no reflection on staff – my report is on the system.

There are extreme shortages of staff on some shifts, and today low morale was in evidence among all ranks of ward staff. Despite how scary this is I become more empathic and stretch myself further. I can do bedpans and hospital corners. I’ve learned to roll my mother safely and administer her meds.

I’m friends with many of the women on her ward.

I’m writing in snatches. What is written above is now yesterday. I have slept for a solid 10 hours in a bed. Tonight my bed will be two chairs next to my mother’s bed. One medicine from the cocktail has been removed to improve her delirium, but its primary action was to stop nighttime trips to the loo. I don’t expect to sleep more than an hour or two.

Yesterday as I clocked off at lunchtime I headed for Costa and found myself weeping unexpectedly in the queue. The hospital Costa is different – here they have seen it all. My transaction for a lactose free flat white and a muffin went smoothly despite my near inability to talk.

Emotions do have a way of catching up with us.

I ask where is the love in my title for this blog. I reply that it is everywhere on my mother’s ward, but that love and dedication cannot be sustained endlessly without proper resources.

So I ask again, where is the love, the love and political will to save our NHS?

How was it for you? #NUNOproject

One of my favourite images from our opening. Alex Forshaw and me listening to Rhiannon Lloyd-Williams’ poetry reading.

What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.

Soon I will be asking the artists on the Arts Council England (ACE) funded Neither Use Nor Ornament (NUNO) project, how was it for you?

I have to do this as part of my evaluation process, but I’m also genuinely curious. This has been a unique project in which I have explored what it means to lead autistically (in my case).

I won’t have got things ‘right’ in all cases, but we made it to the finishing post of our exhibition opening in quite some style. I’m anxious to hear if and how my leadership has made a difference to the artist’s experiences of participation – and if this has further impacted their lives.

What I can tell you is what this project has done for me, by investing in my participation as a ‘player’ at a more senior level in my profession. In doing so I make the case for more of this for more of us. Autistic arts professionals are currently lacking such opportunity for progression – not only as artists but also as artist organisers. This needs to change.

It’s really very simple. In enabling me – through funding – to lead a significant project like NUNO, ACE have helped me to shift from a state of aversion to one of enthusiasm. Autistic aversion (in my case), I see now, was clearly fostered by a lifetime of exclusion. Not understanding neurotypical social code is perhaps where an autistic person begins in life, due to fundamental perceptual differences. What is less understood perhaps is the continued impact of this as a mechanism of our exclusion across a lifetime. Or indeed, what might happen in terms of ‘social appetite’ if the dynamic of exclusion were somehow ameliorated by genuine inclusion at any given point in time. It’s all so obvious once you’ve lived through it, but how many of us get this chance?

I feel we should be more aware that for some autistics social exclusion and a resulting aversion is a dynamic predicated on social bias, which once in play generates a serious barrier to our ability to decode social situations over a lifetime. Through such a dynamic myriad points of learning are lost, by which I mean two-way learning.

So what impact on the possibility of ‘social learning’ across neurologies can genuine inclusion make? I pose the question thinking that I know the answer. I think the impact can be highly significant because of the quality of my own experience in my shift from aversion to enthusiasm. Suddenly, elements of shared social spaces stack up. I am exposed to learning and foster learning in others. This is a two-way conversation.

I’m careful to mention the other side of the neurological coin in terms of learning (so-called neurotypicality). I’ve found that leading as an autistic person enables learning to flow in all directions. Neurotypical learning around me is probably the bit I can’t see, but which I reckon has made a whole heap of difference to how I am received and therefore to how I feel. I know that I am lucky in this regard – it can go so badly wrong when people can’t listen well. I’ve built up to this moment and have chosen my shared social spaces very carefully.

Being a ‘player’ has been vital to this process in which I now find myself wanting to engage with people and places in new and unexpected ways. I still crave a duvet day when life gets too busy, and I don’t love crowded events or small talk. I haven’t stopped being autistic – that not a thing, and I wouldn’t want it to be. What I’m talking about is appetite. The vital waters of my professional life no longer feel cold and uninviting. What NUNO has created – through it’s emphasis on people and relationships – is a warm hug.

Social anxiety and social sensitivity are often seen as negatives, but what if they have fostered a deep sense of responsibility and generated a high level of care for the people on my project? I myself know that they most definitely have. What also, if by some mechanism unknown to me – other than sharing my neurological status and leading autistically – I have been treated more carefully in return? I feel this must be true.

What if seizing the opportunity to lead autistically and to design my project as accessibly as possible has led to something really fundamental? I look forward to gathering more evidence for this exciting notion in the weeks to come.

Currently, we lack models for what is needed to challenge the stranglehold neurotypicality has had on our culture. The dynamic it creates for autistic people is, in my view, toxic. So I very much hope that in time NUNO may provide one such needed template for others to riff with.

Autism and labelling; outing myself for #NUNOproject

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This week I’ve had cause to think again about the question of autism as a label. My default position is to feel autism as an identity. For me this is joyful and unassailable. Try to wrest it off me at your peril.

My team and I are in the final run up to the Neither Use Nor Ornament exhibition, otherwise known as #NUNOproject. Our work has been to create an equal platform for two artists networks, one identifying as neurodivergent and the other as neurotypical. I’ve had to adapt the project as we’ve gone along, due to artists’ highly understandable sensitivity about ableism. It would be an understatement to say, we’re not there yet, re public perceptions about autism. You can read about this in a newly published, curated collection of blog posts on our lovely Museum for Object Research website.

In terms of the project this is something I’m still brain-wrangling. My priority has been to create optimal conditions of access and benefit to the artists involved, but if we’ve been funded on an autism ticket what does ditching labels mean in terms of delivering what we promised? We are, after all, committed to challenging public perception.

I am painfully aware of my disabilities at times. I am seriously compromised by dyslexia and dyscalculia, and this project has often pitched me against myself as project manager. I never felt so aware of my limitations in this regard – for me the rules of spelling and grammar are seriously disabling in ways I can barely explain. I will NEVER learn them, or be able to see on a page where my errors lie. In my world view, insistence on them is traumatic and oppressive. I will always fail to meet their standard, and can’t fully grasp why they matter. Computer says no.

Acquiring help is the obvious answer, but nonetheless, alone I cannot do the job. Don’t even get me started on numbers. The word nemesis doesn’t cover it.

Don’t doubt the shaming or exclusion involved in specific learning disability, nor the impact on a person’s life. I am seriously compromised when navigating new or complex travel systems, for example, which can render me as helpless as a baby, and entirely reliant on the kindness of strangers. And forgive me if you do identify as dyslexic or dyscalculic, what I am about to say is entirely personal to me as I do feel that autism is perceived differently. I understand that others might not agree.

However, foolish I may feel (or may have felt historically) I know at least that I am unlikely to be othered for my seeming ineptitude. I will generally be meet with sympathy, and usually kindness. Invariably, I meet someone wonderful who takes me under their wing and who goes the extra 500 yards to see me on my way.

Autism is different. Out yourself as autistic and you’ve got a whole new ball game going on. This is why I have yet to out myself to strangers in extremis, though I have been close to it several times since my diagnosis. A meltdown on public transport has only been averted by my time honoured strategy of asking someone to help me filter and decode the information I need by explaining simply that I can’t work it out. I have never explained yet that I’m overloaded, or so desperate that I want to throw myself down on the platform. And no it’s not a tantrum, now we’ve got here.

So what happens when you out yourself to a whole network, and an entire community all at once? What happens when every person who works on your project (from your exhibition poster printer to your booklet designer) knows you’re autistic? Every person who visits the OVADA gallery during our show will likely read the poster, which says I’m autistic, including the current Lord Mayor of Oxford.

Next week I will go on BBC Radio Oxford to talk about my project and my autism. I hope that copy about my project and my autism will appear in the Oxford Times next week too.

I have thoroughly outed myself in new and diverse ways. Okay, I’ve been writing about my autism for three years online, but people in my neighbourhood will now look at me anew, and I will soon know what it is I have done in creating #NUNOproject on the most personal of levels. Every person in my professional network will know I am autistic – and this will surely impact my future work in ways that are unknowable to me.

I recognise that in some profound and irreversible way I’ve unmasked myself, and that yet in doing so I’ve hardly faltered, feeling that it is worth it for my community and for the future I want for my children. But it’s not all about altruism and social change.

I’m an autistic person who embraces my disability as identity (not all of us do), and finds the ‘label’ liberating. The more I push through the better my life gets. I only struggle when confronted face to face with people who are patronising, angry, or want to deny my struggles. I chose to paddle away as quickly as possible. I’m too old to spend my time engaged in this kind of nonsense. I’ve spent too much of my life confused and wrong-footed. But I have the luxury of choice because I am a freelance professional, and of an age where the tendency to please others rapidly diminishes.

I feel there is something ineffably powerful in gaining congruence – though I see this as privilege, because so many humans are forced to be other than themselves to fit in. Once tasted, congruence is so good it’s almost addictive.

I remarked the other day that I now no longer think about my autism so very much. It’s not the first thing on my mind when I wake up, and I no longer have to pinch myself. This too is privilege, and a sign that my life is presently aligning with my needs.

A powerful predictor of our resilience lies in the responses to our autism in those around us. I’ve benefited hugely from the love of my family and the bonds formed both online and IRL with my autistic community.

I want more of this for more of us, but I will be telling Arts Council England that our relationships with autism are complicated. We need to build choices about masking into opportunity, and allow for the impact of a lifetime of ableism on an individual to create fluctuations in confidence about unmasking. Unmasking can be wholly situational and should not be treated as a static goal, in my view. We also need to be aware that ableism can make a label out of identity. Finally, I will pose the following question in my evaluation; how ethical is it to encourage artists to unmask for their art?

My future vision, conjured by this blog post, is to create an art project as a sanctuary for artists, as a space for recovery and renewal, without the pressure to perform an identity or assume a label to earn the privilege. Watch this space!

Goodbye for now, but hope to see you at our opening event!

If you can’t make it, we look forward to seeing you online, and you can catch all our content here.

Back where I belong: traumatic memory in an art practice.

I’m a little in love with this picture. It features one element of my new installation, which I’m about to show as part of a large group exhibition called Neither Use Nor Ornament or NUNO for short.

My work is called Conversation and it features an audio piece with an excerpt from my play Playa y Toro, (2014)

A bit like a Russian doll, my play contains a play, and it also combines characters and action from my father’s play Tierra Cautiva, which was written in about 1951, with characters from my art blog Barcelona in a Bag. The typewriter you see in the picture is the exact model he used to write his play. Those who follow my work will know that my father was exiled from Spain in 1939 when Franco’s Fascist forces defeated the democratically elected government. 2019 sees the 80th anniversary of the tragic events in which nearly half a million Spaniards fled for their lives across the border to France. My father’s early plays were a response to the continuing dictatorship and the beginnings of the tourist boom.

Since 2013 I’ve been working with my family’s involvement in the Spanish Civil War as a postmemory project. Postmemory in my case meaning that I grew up with an unspoken, yet inherited trauma. The Spanish Civil War was not my own first hand experience, but I lived with all the consequences of it, and it’s effects on my family, which were significant.

I’ve been aware that on a professional level I should be producing work in this year to mark the terrible events of 1939, and yet I’ve fallen largely silent, just when I might be expected to be most vocal. In part NUNO has taken a great deal of my time, but more truthfully I’ve felt emotionally overwhelmed.

For many of my 5-6 years of professional practice dedicated to this work, I’ve attempted to address the silencing of this history in some quarters, and the lack of awareness in others. This year I can’t complain of that. There is a tidal wave of material which is at last coming to light, and I predict swathes of responses to it in years to come. I’m delighted, but I’m also rendered mute.

I’ve had to think through why my response is one of flight.

Working with traumatic memory has consequences, and I’ve often been aware of the need to pace myself over the years. You can’t work close up with this material and not be affected. What I’ve learned in this anniversary year is that it’s incredibly hard when such a tidal wave hits your online networks. I finally realised this when a friend sent me a video the other day which I just couldn’t open. Earlier in February I wept at 6am, as I logged onto FaceBook with my morning coffee and viewed footage of countless Republican Spaniards streaming towards the border. That was my family, my dearest ones. I can’t help myself, I scan the screen searching for them. It’s quite terrible. Any such footage, photographs or mentions have this effect. I relive this moment of flight in my mind, and the deeply painful truths that were hedged as my family gave my sister and I golden summers on the beaches of Barcelona.

I think it’s the type and volume of information which appears randomly at any time of the day which makes me recoil. I spend a lot of time online. Exposure can happen when least expected. When I’m on a specific Spanish Civil War project and researching, I’m in control of the flow. Probably that’s the difference.

So I’ve been working quietly, and am so very grateful to my NUNO group – there’s a sense of safety in numbers and my work nestles within the collective showing to the public. My piece is gentle, but it does probe at the trauma site.

I’ve called this blog Back where I belong, because in the last 24 hours I’ve reconnected with a font of inspiration for my play – a series of recordings made by Federico García Lorca of Canciones Populares Antiguas. They recall a period of intense studio practice in which I was truly connected to this unspoken family history and surround by ghosts. Project management has in many ways disconnected me from this, but on hearing the music on my iPod I’m transported back there.

I’m also back where I belong in terms of my identity, in at last regaining my Spanish nationality. This feels like a pretty spectacular year to have done so.

Once more thank you so much Arts Council England, your funding of my work for NUNO has been a profound award in so many ways.

#NUNOproject – a case study in inclusive practice

This blog post was first published on @an_artblogs

I’m very interested in inclusion. This is probably because I’ve experienced exclusion. I know what’s like to find yourself behind a glass wall looking in.

As an unidentified learning disabled child, I failed the 11+ and watched my sibling sail through the gates of a prestigious independent school. My parents were a teacher (at the same independent school)  and an academic at the local university, I felt foolish and left out when each morning they journeyed together in the family car, while I took a long bus ride alone to a pretty rough comprehensive school which has since been razed. It taught me a great deal.

I know what it is to try and to ‘fail’ early in life. Bewildered by an exam I couldn’t decode, I couldn’t know at this time that the system was failing me. I look back now and see the system as failing many.  Don’t get me started on education cuts and the news that some schools now have to close on Friday afternoons.

I remember smelling privilege at the independent school’s gates on the odd occasion I found myself there. I looked on and saw confidence and opportunity oozing from the very fabric of the building. I understood that I was an outsider, but could not have articulated it. The world inside this place simply felt intimidating and unreachable. A closed door.

Did I want to be part of this world? I really don’t remember, but I know I felt lesser. I didn’t discover the joys of study until I was 16, but then with my geek fully on I began to motor my way to university. It wasn’t plain sailing. I struggled greatly with my learning and will never forget the powerful knock back from a tutor in my second year at uni, who told me my work lacked the polish of my privately educated contemporaries (of which there were many studying history of art at this time!) Yes, this was 1982 and this conversation really did happen.

Red rag to a bull, I summoned my geek and got a first class degree.

I haven’t yet touched on how undiagnosed autism has impacted on my trajectory, nor the importance of a diagnosis in overcoming barriers. But I’ve written about this extensively on The Other Side.

My story is just one – of exclusion, and of pushing through. Each of the neurodivergent artists on my Arts Council Funded project, Neither Use Nor Ornament, (NUNO) will have their own story. On NUNO we are working to address the impacts of exclusion over a lifetime. It is very deep work indeed, which has required great thought and adaptations along the way.

Working responsively means that NUNO has had to change shape in the making. A fact of which I’m incredibly proud. I’ve observed that the neurotypical template for freelance project work seems to be that we must adapt ourselves to a pre-designed project. In this model the ‘project’s needs’ are paramount. NUNO turns this on its head. Artists needs are my first consideration and if I haven’t got that right I must adapt the project.

This process has taken place throughout and as we get closer to delivering our project I’m looking forward to the richness of the evaluation process.

I’m not blowing my own trumpet. Daily I give thanks to Arts Council England for backing the project so that I could work with 13 incredible artists across neurotypes. It is extraordinarily hard work to project manage, I often have to work against myself as so many tasks fall to me which require heavy duty admin, and that’s just not my forte. Next time can I have a PA please!

But we can’t wait to show you our work – it’s such a rich offer due to the wonderful NUNO artists whose object-based practices we are lucky enough to showcase. Bring it on!

Register FREE for our spring event at our Eventbrite page or just turn up! We’d love to see you.

https://www.eventbrite.co.uk/e/neither-use-nor-ornament-exhibition-nunoproject-public-opening-tickets-55013404574?aff=eivtefrnd

Press release is on our website https://www.museumforobjectresearch.com/press/

Angel Hair and New Year Resolutions

Reflections on autistic project design and leadership at the half way mark #NUNO

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A random memory. Cabello de angel – sugary threads tucked inside the belly of an ensaïmada. Angel hair wrapped in the lightest sweet doughy spiral of my childhood.

I shower and reflect on the year about to pass. I think of angel hair. I feel its curious texture between my teeth once more as the white marble staircase to my grandmother’s flat flashes before my minds eye.

Under the influence of steam I’ve visited the bewigged cake shop owner on the street below and am racing up the stairs with my treat. I’m probably seven years old. In my memory of her this kindly woman resembled a mature Betty Davis, but underneath her wig (I was told) she was completely hairless. In my imagination I saw her wig-less at her counter one time but this is surely fantasy.

Cabello de angel means that I’m both nostalgic and happy. Angel hair is all about rewards.

The family have been enjoying a peaceful Christmas, and in the gaps between viewing ancient Kodak slides on the viewfinder I gave my mother, and seeing off the remains of the Christmas pud, I’ve been evaluating my Arts Council England project.

A non sequiter I know.

The evaluation had landed in the online portal 10 days beforehand, and I’d only happened on it by accident as there had been no notification. Not a good look to miss this particular deadline. The second part of our funding depends on it.

So my boxing day was interesting. I spent the day in a blur playing catch up.

Managing a complex project can feel like a big ask sometimes due to the combined challenges of autism, dyslexia and dyscalculia. It can be scary for example when your brain goes walkabout and you know meanwhile that the pesky checklist of vital project tasks won’t tick itself. I like the phrase buffering which I’ve come to trust as a necessary period of processing. It describes perfectly those periods of time when I simply can’t focus on the ‘right’ details. In such a state it’s honestly better to watch an entire series on Netflix than try.

But when the stars align there is nothing to match what can be achieved by the converse state of hyper-focus.

It seems there must be other states too. States in which we try and fumble. Ones in which we ‘do our best’. I often find it hard to remember these in-between places as being anywhere near useful, and yet they must be because I don’t think that I’ve oscillated between the super functional and resting states in a constant loop from July to December. My main impression has been of grafting and trying – without the luxury of time and space to either buffer or hyper-focus in my preferred manner.

So it’s surprising to me that we’ve achieved so much as I write about it for the Arts Council.

My project is about making a difference and it is doing just that thing in pleasingly measurable and incremental ways. The angel hair for the artists on this project is not for me to share in any great detail, but for some of us it has been transformational. The opportunity to work autistically has allowed for important developments to occur, the most obvious being our (potentially) day after Brexit exhibition opening!

Other effects will be longer lasting and relate to vital relationships and networks forming (and consolidating), and further opportunities of work alongside present employment – which will lead to profiles being raised and reputations made. These are the staff of working lives but the stuff some autistic artists have been long denied due to specific challenges in the area of social semantics among others.

So despite the sweat at times – or more likely because of it – we have some really important half-time outcomes to feel good about. I want to be very un-British and blow our project trumpets loudly!

I want to be clear that this is what happens when you begin to work in autistic ways. This is what happens when we are free to design our own projects. This is what happens when we lead.

So my New Year resolution is very different this year. For 2019 I promise not to change a thing.

Alternative Networking

Image created by NYFA from an original photograph by Philip King

I love it when nice offers come into my inbox through my artist website.

So I was delighted when New York Foundation for the Arts (NYFA) recently invited me to take part in a Twitter Q&A on ‘Alternative Networking’.

Since my autism diagnosis in 2016, I created WEBworks, a peer support and mentoring group for autistic and neurodivergent creatives, and have written about networking and social disability. I’ve been able to gain Arts Council England funding for my work and am leading an ambitious inclusive project called, Neither Use Nor Ornament (NUNO), to be delivered in Spring 2019.

It was this work which brought NYFA to my door.

It’s been a joyful and collaborative experience to work with NYFA’s Mirielle Clifford and Amy Aronoff, who produced the Q&A and worked with me to accommodate my needs. So much so that a blog was created as a permanent post, so that those (like me) who find processing fast moving conversations a challenge can read the Q&A at leisure.

I’m immensely grateful for the welcome given to neurodivergence at NYFA on this occasion. To reach out to an artist like me, to really listen and go the extra mile by incorporating their learning from me into the fabric of the Q&A feels like a dream. It has been a marvellous end to a truly remarkable year for me.

So if you would like to read the full the full Q&A you can!