June 16, 2019 § 1 Comment
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.
March 22, 2019 § Leave a comment
This week I’ve had cause to think again about the question of autism as a label. My default position is to feel autism as an identity. For me this is joyful and unassailable. Try to wrest it off me at your peril.
My team and I are in the final run up to the Neither Use Nor Ornament exhibition, otherwise known as #NUNOproject. Our work has been to create an equal platform for two artists networks, one identifying as neurodivergent and the other as neurotypical. I’ve had to adapt the project as we’ve gone along, due to artists’ highly understandable sensitivity about ableism. It would be an understatement to say, we’re not there yet, re public perceptions about autism. You can read about this in a newly published, curated collection of blog posts on our lovely Museum for Object Research website.
In terms of the project this is something I’m still brain-wrangling. My priority has been to create optimal conditions of access and benefit to the artists involved, but if we’ve been funded on an autism ticket what does ditching labels mean in terms of delivering what we promised? We are, after all, committed to challenging public perception.
I am painfully aware of my disabilities at times. I am seriously compromised by dyslexia and dyscalculia, and this project has often pitched me against myself as project manager. I never felt so aware of my limitations in this regard – for me the rules of spelling and grammar are seriously disabling in ways I can barely explain. I will NEVER learn them, or be able to see on a page where my errors lie. In my world view, insistence on them is traumatic and oppressive. I will always fail to meet their standard, and can’t fully grasp why they matter. Computer says no.
Acquiring help is the obvious answer, but nonetheless, alone I cannot do the job. Don’t even get me started on numbers. The word nemesis doesn’t cover it.
Don’t doubt the shaming or exclusion involved in specific learning disability, nor the impact on a person’s life. I am seriously compromised when navigating new or complex travel systems, for example, which can render me as helpless as a baby, and entirely reliant on the kindness of strangers. And forgive me if you do identify as dyslexic or dyscalculic, what I am about to say is entirely personal to me as I do feel that autism is perceived differently. I understand that others might not agree.
However, foolish I may feel (or may have felt historically) I know at least that I am unlikely to be othered for my seeming ineptitude. I will generally be meet with sympathy, and usually kindness. Invariably, I meet someone wonderful who takes me under their wing and who goes the extra 500 yards to see me on my way.
Autism is different. Out yourself as autistic and you’ve got a whole new ball game going on. This is why I have yet to out myself to strangers in extremis, though I have been close to it several times since my diagnosis. A meltdown on public transport has only been averted by my time honoured strategy of asking someone to help me filter and decode the information I need by explaining simply that I can’t work it out. I have never explained yet that I’m overloaded, or so desperate that I want to throw myself down on the platform. And no it’s not a tantrum, now we’ve got here.
So what happens when you out yourself to a whole network, and an entire community all at once? What happens when every person who works on your project (from your exhibition poster printer to your booklet designer) knows you’re autistic? Every person who visits the OVADA gallery during our show will likely read the poster, which says I’m autistic, including the current Lord Mayor of Oxford.
Next week I will go on BBC Radio Oxford to talk about my project and my autism. I hope that copy about my project and my autism will appear in the Oxford Times next week too.
I have thoroughly outed myself in new and diverse ways. Okay, I’ve been writing about my autism for three years online, but people in my neighbourhood will now look at me anew, and I will soon know what it is I have done in creating #NUNOproject on the most personal of levels. Every person in my professional network will know I am autistic – and this will surely impact my future work in ways that are unknowable to me.
I recognise that in some profound and irreversible way I’ve unmasked myself, and that yet in doing so I’ve hardly faltered, feeling that it is worth it for my community and for the future I want for my children. But it’s not all about altruism and social change.
I’m an autistic person who embraces my disability as identity (not all of us do), and finds the ‘label’ liberating. The more I push through the better my life gets. I only struggle when confronted face to face with people who are patronising, angry, or want to deny my struggles. I chose to paddle away as quickly as possible. I’m too old to spend my time engaged in this kind of nonsense. I’ve spent too much of my life confused and wrong-footed. But I have the luxury of choice because I am a freelance professional, and of an age where the tendency to please others rapidly diminishes.
I feel there is something ineffably powerful in gaining congruence – though I see this as privilege, because so many humans are forced to be other than themselves to fit in. Once tasted, congruence is so good it’s almost addictive.
I remarked the other day that I now no longer think about my autism so very much. It’s not the first thing on my mind when I wake up, and I no longer have to pinch myself. This too is privilege, and a sign that my life is presently aligning with my needs.
A powerful predictor of our resilience lies in the responses to our autism in those around us. I’ve benefited hugely from the love of my family and the bonds formed both online and IRL with my autistic community.
I want more of this for more of us, but I will be telling Arts Council England that our relationships with autism are complicated. We need to build choices about masking into opportunity, and allow for the impact of a lifetime of ableism on an individual to create fluctuations in confidence about unmasking. Unmasking can be wholly situational and should not be treated as a static goal, in my view. We also need to be aware that ableism can make a label out of identity. Finally, I will pose the following question in my evaluation; how ethical is it to encourage artists to unmask for their art?
My future vision, conjured by this blog post, is to create an art project as a sanctuary for artists, as a space for recovery and renewal, without the pressure to perform an identity or assume a label to earn the privilege. Watch this space!
Goodbye for now, but hope to see you at our opening event!
If you can’t make it, we look forward to seeing you online, and you can catch all our content here.
March 9, 2019 § 2 Comments
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.
Press release is on our website https://www.museumforobjectresearch.com/press/
February 2, 2019 § 4 Comments
Yes – it’s happening again. Well-meaning cookie-cutter ableism is at the heart of a theatrical production in the UK once more.
We’ve been here before quite recently with Kibo Productions The big Things, in 2018; non-autistics writing plays with autistic characters determining the action, their autism and their characterisations being ‘othered’ right down to the marketing.
For All in a Row the autistic character is played by a puppet, and the marketing features an image of a row of three yellow fondant fancies with a single upended blue fancy to signify autism. It is immediately apparent that despite its focus on a minority group this production has failed to consider the need for sensitivity consultation.
You have to wonder if in the UK in 2019 this would happen in the case of any other minority group. The problem here is that the adult autistic community is not considered where portrayals of autistic children (or indeed adults) are concerned.
In both cases we’ve heard online from the playwrights about their genuine credentials for writing on this subject – the close friends, the years spent caring on the front line, the meticulous research, and consultation with the National Autistic Society (NAS) – perhaps flirting with the suggestion of an endorsement.
Yesterday on Twitter the author did respond to Tweets by @krystinanellis, some of which I think have since been taken down, but Alex Oates seemed to suggest that the character could not be played by an actor because it was so ‘individual’. Alex consulted parents, they loved the puppet idea, puppets make terrific theatre, et voila!
I’m torn between the puppet device and the blue ‘tits up’ jaunty fondant fancy as to which I find most offensive and frankly ‘othering’.
The play promises to be ‘startling’. It already is. The author promises a video explaining the thought processes behind the puppet idea. I heart the Tweet reply from @g_ting
Once a production gets this far those involved invariably dig in. They have no other option. Obviously with hindsight they should have considered community and avoided such a horrible blunder. Yet again we face the painful truth that adult autistics are not ‘in the room’ yet. We remain invisible until we speak out, which is why I’m spending my Saturday morning writing this post.
It’s really very simple. Creating an autistic character that can’t be portrayed by a person, where all other characters are played by people, is dehumanising. Using dated and clumsy marketing, especially using the colour blue (which is associated with problematic Autism Speaks imagery and campaigns) signals ignorance and stumbles unwittingly into the territory of ableist propaganda.
I wish I had time to write a more eloquent post. I wish I had time to mount a campaign, but I’m too busy trying to work constructively for my community to take this on.
I hope that by speaking out I can join the conversation and inspire others to form a plan.
December 31, 2018 § 4 Comments
Reflections on autistic project design and leadership at the half way mark #NUNO
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.
December 23, 2018 § Leave a comment
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!