Autism and the Emotional Labour of accommodating Neurotypicals

Trigger warning; this article has references to bullying and trauma, and I acknowledge that passing is also privilege

This post is about the sheer emotional labour of managing neurotypicals’ cognitive styles and preferences. This is heightened when autistics find themselves in a minority of one in almost any situation where our own cognitive styles and preferences are not yet understood. It is a serious issue due to the ongoing trauma of cultural suppression of autistic perception and sensibilities.

I rarely look back at old blog posts, so I may have written about this before. I feel I can’t be blamed for repeating myself, as it really doesn’t matter how many times we articulate our lived experiences we will always find ourselves outnumbered and misunderstood at some (usually unexpected) moment. It’s long been my belief that autism and so-called neurotypicality are like mirror worlds, sometimes a literal horror hall of distorted glass. We see each other’s faults and ‘superpowers’ through the lenses of often polar opposite lived experiences. For example, I am sometimes quite appalled at neurotypical behaviour, but rarely feel empowered or emboldened enough to say this out loud. This does not stop me believing in the inherent goodness of the majority of neurotypical humans. I just wish they could look outside their own experience as autistics are forced to do all the time.

I’m sure that many other humans belonging to minority groups will feel acutely the issue of number bearing down on them in their daily lives. Oppressions come in many forms when a majority culture doesn’t fit you or even attempt to fit you in. But autism is a singular disability and a unique difference – the ability to decode non autistic human behaviour is variable among us. Our social antenna are not the same. This makes us not lesser or greater, but it means that those of us who learn to get by to some degree in neurotypical spaces are probably relying on years of practice and an archive of memories. Our presence among you when we’re ‘passing’ is hard won. The battleground on which our skill has been honed is beyond painful. I need to tell you now that I bear the deepest of wounds to be so fluent in your company. When I transgress your norms it is quite possible that you have also transgressed mine. The injustice of this situation goes beyond simple annoyance.

When I acknowledge this truth my ‘resilience’ astounds me. The ability of autistic people to survive the emotional harms of (what I’m sure are unwitting) neurotypical oppressions is astonishing – though of course many of us don’t make it.

The influence of this majority culture can be so overwhelming and our enforced passing so habitual that navigating neurotypical spaces contains inherent risk for those who venture there. You never know when an emotional booby trap will plunge you downwards, or when the next psychological landmine will blow. Days can be lost in recovery. The blow is always familiar, you reel with incomprehension and lick your wound. Some time later comes the work of analysing events and rebuilding your inherent right to be alive.

Anyone living with trauma will recognise this process. It is visceral fight or flight territory. Cortisol surges wildly. The barbs are electric. We are always wrong until we can right ourselves again. If it sounds exhausting and a little dangerous, it is.

Passing for any group will always be fraught. Passing is an enforced state, a perilous training in avoiding bullying and worse. I would not have survived my secondary school (now demolished, thank god) without extreme passing/ code switching and other wildly self-injurious strategies.

I don’t want your pity, what I want is consideration. But what I know is that to get anywhere close to this I must lay myself bare, which represents more emotional labour.

Looking back over recent times I realise that I’ve found myself in a lot of new situations where I’ve had to work out what’s expected of me. This can take autistics a lot longer. One survival strategy is to observe, pick up clues, and seek the patterns. This comes so naturally to me I don’t even know I’m doing it. What I feel is anxiety, I know I don’t yet know what the dynamics in the room mean. They’re all fuzzy interference until I’ve observed them for long enough. The pressure to pass before this process is complete is almost intolerable. I can feel at my most klutzy.

With all this pressure to pass – usually as the lone autistic – I’ve been forgetting myself. I’ve been skirting round the booby traps and feeling almost immune. Passing confers great privileges. It can really take the edge off util it’s payback time.

So I write with a renewed sense of my identity as an autistic person who doesn’t want to spend her life passing, which is a bitter sweet moment. There’s a real rub to it, which is that ‘feeling more autistic’ is often a result of being more disabled. But until more progress is made in the wider world, anything else is a mirage.

The emotional labour involved in navigating non-autistic spaces has a huge impact on our life chances and our mental and physical health. We need to start building more honest bridges between us NOW.

What is good about my renewed sensitivity is that it will make me a better advocate, a role I’ve missed. It also prompts me to seek autistic spaces for new ventures. I’m tired of being the lone autistic in the room.

Global impact: a way of thinking about neurodivergence, cognitive load, and the pandemic

White woman with short dark hair with a jump lead pegged to her nose, and cut out collaged pink flowers over her eyes.
Running commentary © Sonia Boue 2020

I was at an online meeting of neurodivergent (ND)people recently when I realised how little I blog these days, but how much there is to say about ND experiences under pandemic conditions.

I’m a freelance visual artist, mentor and consultant. I also write extensively, it’s often said in the obligatory artist bio. Except no. Lately, I can’t write. These days I can barely compose a text-based tweet on my once favourite SM platform, and I gravitate towards all things visual, preferring to use Instagram and posting the occasional photo tweet. I’m hoping to break my recent drought with this post, but what’s occurring?

We had gathered to articulate the specifics of the ND challenge in the arts. Not an easy task. We are but one of many marginalised groups and the arts is a tough nut of privilege to crack when it comes to opportunity. Yet there are distinct aspects to the ND disadvantage however slippery at the point of articulation. I’ve long said that we use the same language to describe quite different lived experiences across neurological types. This tripped me up for a lifetime until I grasped it as recently as 2017, in the wake of an autism diagnosis. A ‘common’ language to describe radically different perceptual worlds is a genuine obstacle, because it’s all we have. It’s a hermetically sealed system embedded with bias and assumption.

Too often the ND lived experience will be met with an exclamation of, me too! Our neurotypical (NT)counterparts are listening with NT ears. They can’t help it. We all do and have that, is perhaps one of the most common responses ND’s will get to open expressions of lived experience. It can be quite baffling for us, not to say dispiriting, and ultimately eroding. We know it can’t be true, as otherwise these NT’s wouldn’t be able to navigate the world with such ease.

A well oiled wheel with no grit on the road goes unnoticed when it is always so.

These false equivalences are a natural consequence of the double empathy bind, first coined by Dr Damian Milton. The double empathy bind unlocks the vacuum seal on the NT assumptions embedded in our shared language, and one of the most pernicious fallacies about autistic people – that we don’t have empathy – is rightly lambasted. I can’t do justice to Damian’s theory here, but my takeaways are that we don’t all perform empathy in the same way, and that humans across neurological types can only empathise with what they understand.

This is crucial. What’s needed is more understanding and more listening. I suggest this should be proactive on the part of the dominant NT listeners and would-be empathees. NDs can only do so much of the heavy lifting and we, after all, have the communicative disadvantage in NT spaces.

A further complication in articulating and enabling others to understand distinct ND need is that ND’s are not one. By which I mean that we, as a number, are pretty diverse in profile and need. Moreover, many of us have overlapping profiles, such as autism and ADD, for example. So this will never be a one-size-fits-all conversation. What we will need is flexibility and options.

This meeting was so good, mainly because it’s delightful to be in well moderated ND spaces. It was also productive to my thinking. I found myself writing the phrase cognitive load in the chat box. It’s a vital concept in understanding how our capacities can be worn down by hostile sensory input, interactions and information. When you can’t filter these inputs they quickly build up and cause overload. Pacing out input, simplifying it and allowing for down time is vital in enabling us to participate as equals. It seems obvious, but it is worth saying, when you can’t function you’re unlikely to be in, or stay in, the proverbial room.

Pandemic conditions mean that I’m busier than ever, mentoring and working with organisations, this is because the need is greater and the work is remote and therefore accessible. I have less time to process, but the demand for processing time is greater. Then there’s the pandemic itself, the processing elephant in the room. The magnitude of the pandemic and my feelings about the Government response, are enough to render me speechless most days. Combined with the increased cognitive load in my working life, I feel almost silenced. That makes me sad about my written advocacy.

I feel I have insights worth sharing, which could continue to help in the ND cause for parity and social justice. I meet so many ND creatives in my sector support work and can discern the patterns of lived experience and need, with my innate autistic ability for pattern recognition. I’m itching to share my thoughts, which surface in moments of quiet. Stress on cognitive load eats away at you. Thoughts can’t settle, working memory frays to nothing, the gaps in your ability to function widen. It can take days to recover.

My second chat box golden nugget is the phrase ‘global impact’. By which I don’t mean the pandemic. I wrote it in response to the question of distinctness, as we approached the close of the meeting. ND’s face multiple challenges in an uncertain and largely unstructured sector, which as an environment is an added stressor in itself. I’m interested in viewing the global impact of ND challenge across a lifetime as potentially being an inherent and ongoing trauma, requiring specialised safeguarding, support and recovery. It could be especially useful to consider the concept of global impact in the present circumstances.

In brief, it’s my sense is that it will be vital to any conversation about ND need to consider the global impact of lived experience in the context of the pandemic.

I’m so grateful to Jon Adams and Dan Thompson for organising the meeting as part of the Flow Observatorium Arts Council England funded ND Survey project. Thank you for restoring my blogging mojo!

Could social media hygiene soothe us and bring joy?

White female with cropped short dark hair wearing a colourful headscarf looking thoughtful.

Wash your hands. Wear a mask. Keep your distance. Mind your tweets!

I’m not suggesting Twitter use is deadly, though my relationship with the platform has begun to feel like it could be terminal. Lately I log on and wonder what’s happened to us all? There’s a lot to rage about and to feel fearful of I know, but increasingly it feels like everyone is shouting at me. I can’t welcome visitors to my home, but I’m sure if I could they wouldn’t rant in my face. So why am I hooked on opening a social media platform where people do? Well, I’ve used Twitter for a long time and enjoyed the benefits of accessible online connection as a disabled person. It would be devastating to lose it.

So I’m keen to reconnect to what I’ll call #goodtwitter

The question is how? Filtering brings relief from some specific topics. I no longer see tweets that mention Brexit for example, and I’ve muted over 5,000 accounts by simply using the mute button like a duster whenever I log on. When you have challenges processing text it’s useless trying to read all the retweets (RTs) littering your timeline. I now wonder whether we ever genuinely consider our followers timelines when we share the content via the handy, not to say addictive, RT button.

So I’ve also begun to do just that. Pausing to think about my own needs I’m able to think of others. I want to say sorry for some of my appalling lapses in thoughtfulness too! Looking back I can see how the platform groomed me to spread content indiscriminately, with good intentions but annoyingly so, and possibly disablingly so too.

So what can we do? So much content these days can feel vital and urgent, and we’re moved to consume and share it. We’re also moved to console and entertain. These impulses are good, laudable even. So what’s the deal when we log on and can’t cope with the noise of our collective impulse to share at this moment of global crisis? Surely we have to own that there’s just too much of it and it’s not helpful.

My personal Twitter use is down to me. I could use Tweetdeck for example, but while I enjoy the sense of order for a day or two I can’t manage multiple columns in the long run. I have a neurological condition which affects my ability to maintain ‘binocular focus’. I need to scroll a single column.

Twitter’s modus operandi addicts us to chasing and following content, and following too many accounts is also a common problem. This takes time and focus to undo, and can create social anxiety. Accounts are people, after all, and the social etiquette of Twitter following and unfollowing can feel fraught – especially for those of us with different social orientations.

Following over a thousand accounts whose RTs spill into my timeline is a ludicrous proposition in terms of processing time. It’s all my own doing! Muting content has become essential, and while time consuming in itself, it satisfies the part of my brain which assiduously patrols the Tupperware cupboard. This cupboard is sacrosanct, and I can’t rest if lids aren’t snapped safely on and the Tupperware is not neatly stacked in shape and size order.

My ambition is to log on to the joy and tranquility of a well kept Tupperware cupboard, so to speak. A tall order, I know! I want to be a good follow too, so I’m practicing Twitter hygiene. I’m not proselytising – you do it your way and I’ll do it mine – but if you read this I hope you might stop and think for a moment. Do you enjoy Twitter? Is your RT strictly necessary? Vent by all means if it helps you, share if you simply must, but when was the last time you had a decent conversation or felt soothed on Twitter?

In a wider sense, my question is what do we actually need at this time? What’s genuinely helpful? What could be the most beneficial use for each one of us (and it will be different of course) of this social media platform? Ultimately, it’s up to us who we follow, we do have control, and we can create #goodtwitter timelines for ourselves if we invest the time and thought required.

I’m autistic so I quite like clear rules of engagement. The following are my simple to use top 6 Twitter hacks in case they’re helpful.

1. I no longer share the content of organisations with large platforms. How many times do you need the same content peppering your timeline?

2. I’ve adopted a 1 retweet a day rule. I don’t want to litter my followers’ timelines with too much content. 1 a day seems adequate. If I RT twice in one day for any reason I’ve decided I won’t RT on the following day.

3. Serial retweeting within a short timeframe is #justno. People who log on to Twitter for a bit have an RT fest and log off again are the ultimate (unwitting) Twitter bugs. I’ve been there and done it myself. So I’m not judging, but you may as well chuck a series of banana skins on my path. For me it’s time spent muting your RTs and dealing with the ads the enraged Twitter algorithm sends my way to punish me for muting content. Eventually I’ll mute the user. My time is important to me.

4. I’ve cut back my own tweets. Fewer more considered posts with an emphasis on visual content is my current preference. I struggle to find words since the pandemic, but I find I can speak by sharing images.

5. I plan to mute content until my timeline amplifies the voices I need to hear in this moment. I know #goodtwitter is there – you just got buried in the noise.

6. I plan to try an ad blocker app. As I hinted earlier muting throws Twitter into a rage and the adds multiply exponentially. It’s awful.

I think that’s all. This blog post could have been a Twitter thread but I didn’t want to litter your timeline.

I will share my blog post sparingly. Despite the importance of this message to me, it’s the least I can do.

Tight spot. Real talk. Access to Work.

White hispanic woman with short grey/brown hair, wearing an egg yolk yellow jumper and large black rimmed glasses, stands behind a small vintage brown suitcase. The suitcase has the letters F.C. H. embossed in gold. The suitcase is standing on it's side, resting on a white cupboard. The woman is wedged in a corner behind the cupboard with the suitcase pressed up against her face.

Yeah. This is a tight spot.

Hello, my name is Sonia Boué and I’m an artist. I also write about art and autism. Sometimes I write about professional matters, but I also write about being autistic. Often there is a crossover. Being a professional autistic artist is both easy (I have no shortage of creativity) and not so easy. Obstacles abound. I like to analyse the inequalities to counter them. We have a long way to go – largely due to historical ignorance about autism and other often overlapping neurodivergent ‘conditions.’ I’m conscious that in many ways I’m a privileged autistic person, so I chose to speak out.

Covid-19 brings a lot of clarity, ironically.

Growing into my autistic identity after a late-in-life diagnosis is an ongoing project. There are challenges, such as those as I write about in my previous blog post about emotional processing. The early months are the hardest, because generally there’s no support for the newly diagnosed. More than four years on it is mainly joyful being me.

Covid-19 arrived just as I began to embrace my identity as a disabled person too. Not all people in the autistic community do identify as disabled – so this wasn’t a given. For me it’s both freeing and matter of pride, bringing new conversations and fresh thinking.

Lockdown easing in the UK was a low point for me, but I’ve come through it feeling grateful for my family, and for wonderful friends and colleagues. If I were to die of Covid-19 I would want to have said thank you. You’ve empowered me with your interest, love and support.

I know this tight spot is like no other. The opportunity for factory reset is Covid-19’s silver lining. I did not like the old normal. Our eyes are opening to the structural bias’ embedded deeply within our societies and there’s a new hunger for change as witnessed by #MeToo, #BlackLivesMatter, and #WeShallNotBeRemoved.

I’m familiar with tight spots. Constricting and potentially disabling, they also bring opportunity. What matters is collaboration and support. This can be hard for autistic people as we can also need a great deal of time alone, and often find the emotional labour involved in maintaining relationships difficult to sustain. For some of us, a lifetime of ‘coping’ and ‘masking’ autism leads to extreme isolation. I’m convinced that although we excel at going solo (and need to for many tasks) we also benefit greatly from collaborative opportunity, if brokered in accessible ways. I’m curious about the mechanisms by which access to support is short-circuited, which I suspect are fulled by serial and ongoing negative responses to our interactions. Whole lifetimes of being misunderstood pile-in to the psyche. Why reach out when you know you’ll get your wrist slapped. Some of our so-called ‘characteristics will result from negative learning.

I’m interested also in the protective influence of love and acceptance, and the confidence self-knowledge brings. And what about the catharsis of being seen and heard? Sometimes it takes another person/persons to validate our experience for us. How many autistics miss out on this important encouragement?

Isn’t it true that we only know what we’ve been missing when we experience it for the first time? Well this week something like this happened to me. What I’m noticing under Covid-19 is that I’m having (what I call) real conversations. There’s a new honesty in many of my interactions – less small talk and social lying.

Part of this new honesty is a truer reflection of my disability. This week I’ve been supported to make an application for Access to Work. I’ve rarely felt more seen and heard. Ordinarily you might think it would be painful to detail all the areas in which you need help, but curiously this wasn’t the case in this instance. I put that down to the quality of support I received and the incredibly generous and thoughtful ways in which this process was made easier for me. I can’t really stress enough how good it was to hear the words, ‘I do hope you get this’, from my helper.

Invisible disability is difficult to broker. Allies who get this are worth their weight in gold. I want to thank Arts Council England, Disability Arts Online, and DASH for getting me to the point of an Access to Work application. Due to my disabilities I couldn’t have accessed this alone. It takes a lot for me to own that my need is real. If granted, Access to Work could revolutionise my practice. Our sector needs to understand the myriad ways in which this is not a level playing field.

Autistic emotional processing in a pandemic and the importance of guilt-free decompression.

White Hispanic woman in light checked pyjama top and cropped hair is viewed sideways on. She wears black rimmed glasses, and a gold stud earring. She is sucking on a rubber pacifier.

These days I’m often wordless. In their place I’m making a torrent of images, mainly shared on Instagram.

I’m an artist and creating visual responses is one way of processing my emotions. If entering lockdown in the UK felt like limbo, this at least had certainty and felt relatively safe. Easing lockdown in the UK is a hellish limbo of another kind, the sort that can seriously mess with your mind.

Like many other autistic people I have to work harder to process emotions than the average, so feelings sometimes arrive suddenly (explosively even), unwelcome and unannounced.  This can begin with low level yet visceral physical unease which fails to register in my mind. There’s often a stealthy build-up of tension, I find. Also, vague feelings of malaise are all too familiar, so I tend to just bat them away as a matter of course. I can spend entire days playing tennis with creeping anxiety. I’ve got a great forehand and a smashing backhand too. I can even lob while typing – something I’m doing right now, actually.

I’m a cheerful autistic person up front, with an Eeyore undercarriage. Most of the time I’m up, though I am prone to sudden melancholy. I’ve learned that if this is not tiredness or hunger, there’s usually a third reason to analyse and thoroughly get to the bottom of before I can regain my usual cheer. With Covid-19 this has got a whole lot harder, and though I know it’s not just me, I’ve struggled to identify my extreme anxiety over lockdown easing. I now see it’s been a double whammy.  Major change (well known autistic kryptonite) combined with confirmation of the terrifying chasm where responsible, ethical government should be. Simply put, we are not safe, we are not safe.

Getting to grips with this when your mind and body are playing nicely together must be difficult enough. Raw unprocessed anxiety can be immobilising. Grey exhaustion, aching bones, crawling skin, and a tight band around my head, seemed to overwhelm me quite inexplicably last weekend. I call this emotional flu’. Although I struggled to believe I was coming adrift, there was nothing for it but to ‘cave’. No more lobbing the ball, Covid-19 is not Wimbledon.

Because autistics often live with chronic anxiety anyway, and emotional processing takes time – owning that we’re not okay can be a much slower process. In the build-up to meltdown, for example, I’m prone to grumpiness and largely focused on keeping afloat. It’s a sure sign that overwhelm is on the up. Being a bit ‘out-of-sorts’ can quickly progress. Suddenly I’ve blown a gasket, seemingly for no reason, but behind the scenes extreme physical discomfort – emotional overload plus sensory stress – has peaked.

I start to register that I’m not okay when emotional flu’ sets in, when days pass and body and mind still won’t play ball. The only remedy is solitude and physical therapy – for me this is probably quite foetal and has to involve prolonged immersions in water. Slowing everything down allows me to catch up.

I think too that it’s harder to own to not coping (however temporarily) when you’re basically lucky. I live in a nice bubble and can shield. Rationally I tell myself I’m pretty okay (and I am). It’s important however to absorb the myriad emotional impacts of Covid-19 on all of us. I’m better off when I can say that I’m both enraged and terrified by our government. The virus in itself is frightening but we know that with the right management it can be contained. Right now this is what really hurts.

I hope that in understanding myself, and in sharing this brief account, I can help other autistics, family and friends. Reaching a resolution of feelings really helps. Giving your autistic loved one guilt-free time and permission to decompress is the best thing you can do.

 

 

 

 

 

213 Things About Me Episode 1: You what? A Review.

213-Things-About-Me-Podcast-logo

Trigger warning – suicide mentions.

I know a a lot about posthumous collaboration. As an artist I work in multiple forms to respond to my father’s life story and his plays. I’ve even written a play about a playwright with my father’s name, and adopted his voice to narrate my take on his story. In many ways I view Richard Butchins’ 213 Things About Me as a kindred project. At an artist’s talk last year, I was caught by surprise when asked what my father would think about my work. This question has stayed with me and makes me wonder what the real Rose would make of these podcasts. It takes a profound level of trust in a relationship for work quite so intimate. The first episode of the series is called, You What? 

This is a helpful perspective if you’re concerned about an autistic man curating an autistic woman’s voice. Also, this “true story” isn’t just told from one woman’s perspective. 213 Things About Me began as a conversation between friends. You What? continues in this vein. I’m intrigued to know how this aspect of the story will play out in subsequent episodes.

Richard’s voice expertly weaves though what is a beautifully constructed narrative to help tell Rose’s story, and to add his own experiences and opinions. I’m glad he owns this. Actor Rosa Hoskins is superb as Rose. Patrick Knill is the voice of Wikipedia. These are voices to disarm the most wary of “regular folk”, which is Richard’s term for people whose neurology doesn’t vary from the supposed ‘norm.’ ‘Regular folk” are perhaps the prime audience for these podcasts, though “irregular folk” may enjoy them too.  We may not see ourselves reflected in Rose and Richard, but autism is as varied as “regular folk” are, and that’s okay as long as listeners listen carefully. Rosa finds comfort in maths, I still have residual school maths trauma. There are many ways to be human, as Richard says.

You What? includes beginners notes to complex questions, such as what neurodiverse means (I’ll get back that). The soundtrack is just shy of upbeat.  Everything signals that we’re in good hands. We’re about to go inside autism, and most listeners will feel reassured with Richard as their guide. 

“Welcome to the world of ‘Rose’, where social distancing is a daily reality. After her diagnosis for Asperger’s Syndrome, Richard suggested she write a list of her positive qualities, which she called 213 Things About Me.” 

It’s a smart move to publish these podcasts at a time of social distancing. For once autistics are watching “regular folks” cope, and we have wisdom to share if they’ll listen. So I hope these podcasts will prove popular beyond our community. Richard was granted access to Rose’s computer files, allowing for so much more than just an engaging list of attributes. It’s the longer passages of Rose’s thoughts I enjoy most. Forensically dissecting the art of lying, she concludes the intellectual effort isn’t worth it. I longed for more room for her voice, but there was a mountain of contextual information to pack into episode 1. The background to this story (to understanding autism) is complex, and I guess that’s the point. There wasn’t enough Rose. Her life was cut short by events we will perhaps learn about in future episodes.  

So this story comes with a major trigger warning. Rose is a fictional name for a woman who tragically committed suicide six months after her Asperger Syndrome diagnosis at the age of just 36. This is but one reason I might hesitate to listen. Autistic adults who do not have a learning disability are 9 times more likely to die from suicide (Autistica UK) than “regular folks”. Richard tells us that Rose was special in an exclusive way because she was damaged by the world around her. I think this series of podcasts will do much to inform about the intolerable pressures on autistic people to conform to neurological bias’. We’re seriously harmed by the “regular folks” demand that we be like “regular folk” too. We simply can’t be, so we disguise ourselves to survive and such erasure can be devastating. 

I’m not damaged by life, but I do have inbuilt defences. Autism narratives can cause discomfort even when the author is autistic. Internalised ableism and adoption of unhelpful tropes can be intensely triggering. The simple fact of ones own autism not being reflected can be painful, this is not narcissism it’s a pile-on into our historic erasure. I have to be sure I have the mental capacity to invest. A project like this also throws up comparisons. Will this be another The Reasons I Jump, or Rosie Project? I get easily bored. I have a short attention span. I am suspicious of new things. I could get hung up on the use of a robot in the publicity pic, (I wouldn’t use it) but I respect the quality of Richard’s work and Disability Arts Online’s content. You have to trust both the source and the voice, and I do.

213 Things About Me is unique, though it contains echoes of other autism narratives and touches on some common tropes. You’ll learn as much about Richard’s views as you will about Rose. “When people ask for your opinion don’t give it.” Is great advice for people like me who fall for this “regular folk” trick every time. I’ll try to remember, Richard. Cheers! 

If I wanted to quibble (and I often do) I would argue with Richard’s use of the term ‘high functioning’ in this episode. He also misuses the term neurodiverse, but so does virtually everybody else. I’m glad he does because it lets me off the hook. I’m officially quitting my queen Cnut perch on the important difference between neurodiverse and neurodivergent. If even Judy Singer, the originator of these terms caves to this inevitability, then so be it. Like Rose, Sonia likes precision but she isn’t going to get it. 

Do give episode 1 a listen, and let me know what you think.   

Conceptual loo rolls.

 

Woman with buzz cut and black rimmed glasses seen from the side. She is wearing a long cardboard tube on her nose. It is held on by black elastic.

Stay alert! Do your civic duty! Don’t move on.

Writing under lockdown can feel like trying to thread a broken needle. Adjusting to Covid-19 is a full-time job. This week’s been especially tough. A nation raw with grief confronted by a government intent on rubbing salt into the wound. Somehow, I’ve taken to making proboscises (the nose of a mammal, usually long and mobile) out of cardboard tubes. It looks simple (and it is certainly makeshift) but it’s complex conceptually – I promise.

I sometimes write here about autism and the art sector. Cut adrift from my usual groove I’ve made new contacts and gained a different perspective. How will I write about neuro-inclusion in future? What will the arts be like if/when we emerge safely from lockdown? What will my priorities be? With so much yet unknown, I’m thrown back on myself. Unpeeled is the life before, and once unpeeled it loses some of its stickiness. What was I so adhered to?

I’ve even had a ‘lockdown birthday’ (I love how you can add this word to anything), and I’m coming to terms with ageing. I’ve been feeling absurdly young, I realise. A late diagnosis of autism is probably the cause. I’m a child in woman’s body, not developmentally speaking (I wouldn’t use such language) but rather in the sense that I’ve needed to make a fresh start in life in my 50s. Curiously, lockdown has allowed me to feel my age, and rekindled my love for the window on life autism brings. This pause has been good for me. Life on the outside (I now realise) has been ultimately eroding. 

There’s a paradox to navigate. I feel terror. We are living and dying under Tory misrule in the time of Covid-19. I feel released. I’ve found time and space to play – finally. 

Autism (for me) gifts a certain sensitivity, and the ability to focus on subjects of interest. Conversely, it is difficult to focus on anything which doesn’t connect in some way to one of my passion projects. This probably makes me good at not ‘moving on’. It’s a useful quality in present circumstances. 

My loo roll proboscis marks a moment. Through persistent visual research I’ve arrived at the perfect expression of all the intersecting strands of my practice (past and present). I can’t deconstruct this here, it’s all far too fresh and densely packed. I hope that one day soon I will. 

All I can say right now is that (quite perversely), the present uncertainty has enabled me to refine and crystallise aspects of my practice. Am I seeing more clearly because I have more time? 

The value of creative resistance in such a moment is incalculable. With my cardboard noses I will stay alert, do my civic duty, and not move on. 

 

 

 

 

I wear my beret because this is a long story, as old as time.

UK readers will know the context for this micro-blog, which first appeared on Instagram @s_boue

It has taken a disaster to teach me how to wear a beret like my grandfather. It sits on top of my shaven head and feels suddenly right, after 4 years of thinking it was too small. A child’s beret! I thought. That was before we crossed a red line and I shaved my head too close, all on the same day. My grandfather lived to be 94, and sat in his armchair tutting and muttering, I shit in the salty sea! It’s a Spanish phrase. Bah, bah, bah…he would say to himself, and then smile at me. Sonia Begonia, he called me. I didn’t know what he’d lived through or what he’d seen. Sonia is the only one who understands the thing! He said often. Yes, my mother would say, but what thing? He never told us. Sometimes I think about it. I was a wilful and ‘naughty’ child. They called me the earthquake. Was it this? My wilfulness? I’ll never know. What I do know is that he’s with me in these strange days, guiding me with his mistrust of those who treat the people, el pueblo, like fools. Bah,bah, bah! I shit in the salty sea! I wear my beret because this is a long story, as old as time. 

A brief blog about a culture shift in accessibility under #COVID-19 #disability

IMG_2323

Updated and retitled, this blog has been republished with a new image

So we’re in COVID-19 lockdown.

Many neurodivergent and disabled people are watching, the abled neuro-majority, with fascination.

We are witnessing a moment that is spectacular and beyond our wildest imaginings. The tragedy is that it’s taken a lethal pandemic to create the culture shift we need. Accessible work norms are being adopted on a global scale, when many of us have struggled to gain basic access accommodations so much closer to home. That this is so brings a sense of awe, the scale of which (like the pandemic itself) is almost impossible to grasp. For once, we really are all in this together. Many will want to say, welcome to lockdown! Welcome to our world.

This is the moment to say that not all neurodivergents or disabled people are the same, and that some of us are extrovert, highly mobile, and need frequent ‘real time’ social contact.  We do, however, all face barriers to participation in our daily lives (including stigma).

In this moment the variously identifying stay-at-home veterans are looking at you. As you join us in your vast number, we gasp. As you struggle to adjust to lockdown, we can only gawp in wonder. You’ll finally know what it is to live with restricted mobility, but will you even consider us? What will you learn? And when the nightmare is over, will you still remember?

In the UK Spring has sprung. I sit writing this piece by my widow. My neighbour’s cherry tree is almost in blossom and the sky is picture-perfect blue. I noticed yesterday that the birds are returning. No aeroplane trails cut through this pristine sky. It’s as virgin as untrod snow. Our planet heaves an audible sigh of relief, and on one level so do the normally-stranded.  My usual status is more out-and-about than some, but staying at home is the best way I can avoid the significant impact of sensory stress.

Yesterday I visited an adult autistics’ social support group via Zoom for the first time. It was magnificent. What pleased me beyond the ease of this technology were the clear rules of engagement. Our facilitator also directed the flow of conversation like a skilled traffic cop (in a good way.) Not that the traffic was heavy, and all of the drivers followed the rules. No jams and no confusion. Text chat options enabled multi-modal yet simultaneous group dialogue to take place, and one of us chose to participate with sound only. The advantages quickly become obvious. Avoiding the sensory assault of travel, and access to a greater number of communication options make meetings not only do-able, but also without negative impact. This is revolutionary. This is the layer the abled neuro-majority need to know about and understand.

At the close we talked briefly about this moment, and I feel it must be spoken about more widely and acknowledged. As the abled neuro-majority scramble to adjust, I admit to a feeling of calm in this respect, though I fear the virus greatly.

As I process all the implications I wobble, but I don’t fall down. For now, I’m distracting from the horror of COVID-19 by gazing at our new world order and wondering how this access story will play out.

You can find my tips for online networking in my previous blog post.  You can also find out about my art practice here.   I’m @s_boue on Instagram and @SoniaBoue on Twitter.

NB. I’ve chosen to republish this blog post. I can no longer distract from this pandemic by thinking about access issues, but nonetheless the moment it captures is important. I hope we can all learn the lessons COVID-19 brings.

My artist freelancer’s guide to online networking. #COVID19

Woman with short dark hair wearing collaged tomato glasses and yellow rubber gloves grips a camera.
New Tools for Life © Sonia Boué 2020

My top tips for surviving and thriving online.

We’re all at sea with this coronavirus pandemic, and for freelancers in the UK it’s also been a body blow to learn that  (the the time of writing this) our Government has failed to support our incomes in line with employees. With so much creative industry work cancelled (for the foreseeable future) we’re entitled to feel hung-out-to-dry.

We know that world health matters most, but meanwhile we need to make a living, and find ways to “stay calm and carry on” from home.

It’s wonderful to see so many rapid responses to this crisis. A-N have created guidance and information for artists, Disability Arts Online have responded by creating new commissions, and Mathew Burrows recently launched the Artist Support Pledge. It’s all good. We will refashion our working lives.

But in all the uncertainty, there’s one blinding truth. Abled freelance creatives who’ve taken mobility for granted can no longer do so. We don’t know for how long, or in what ways the coronavirus will impact our future working norms. With self-isolation our new reality, and lockdown round the corner, we will all experience the same level of dependancy on the online world for communication.

So I want to say, welcome! This is where we (the variously-identifying stay-at-home freelance veterans) hang out and do our business. We know that you’ve enjoyed these spaces too, and found them a useful support to life and work. But this is a whole new level of habitation.

You’ll quickly connect to this next level but it can be overwhelming. I’ve spent 10 years building a career online, and this is what I’ve learnt about how to avoid the pitfalls and thrive.

  1. Ignore social hierarchies that shame online interaction. It’s not shameful to be seen to be a regular online user.
  2. We can break through social isolation by daily sharing. Regular sharing builds networks.
  3. Sharing and responding is important. You don’t have to respond to everything. Promote the voices you believe in without expectation. It’s not a given that they will like or share your content in return.
  4. Sharing quality content is key. This includes process and context for your work, as well as finished works. Visual artists especially, the quality of your images is important.
  5. Sharing is also the work. Online is also the work. You’re constantly building.
  6. The pace of online connection is different. It can feel and be instant at times, but deeper connections take more time and patience.
  7. Share for you, not for likes. You’ll find your own level. It has to feel good and useful to be right for you.
  8. Don’t worry if no one engages with a post. This isn’t failure. There’s an avalanche of information to process online. It’s not personal.
  9. Only tag contacts into posts if it’s likely to be useful/relevant/interesting to them. Repeatedly tagging contacts can be off-putting.
  10. Boundaries can get blurred. Remember online sharing is publishing and subject to publishing law.
  11. ‘Oversharing’ can be a hazard of spending more time online. This is what the Direct Message (DM) function was made for.
  12. People respond more to positive messages. It’s okay to share negatives, but a consistently negative message can be off-putting.
  13. Be true to the core of your creative practice online. Don’t try to be all things to all people, but do link what you do to others, and to what’s topical, when relevant.
  14. Using hashtags is an important networking tool. Researching relevant hashtags is time well spent.
  15. In 2020, filtering, muting and blocking options have become an essential part of the online freelance toolkit. It is your right to inhabit and work in a positive and  conducive environment. This is now also useful information for safeguarding your mental health online regarding coronavirus anxiety. You don’t need to stay away, you can filter trigger words on some platforms.
  16. Online platforms can be overwhelming. It can take time to find out what works for you. Follow the people and organisations that interest you, but with multiple contacts it’s wise to use filters. Enabling notifications for key contacts is also a great tool for keeping in touch.
  17. A watched kettle never boils. Follower numbers are the same. Network for the joys and benefits of connection and your numbers will grow themselves.
  18. Adopt what works for you, you don’t have to do it all.

 

www.soniaboue.co.uk

Instagram @s_boue

Twitter @SoniaBoue

 

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