no business like show business

I read this blog post by the amazing Rhi this morning. “Performing Pain” – about the autistic experience of pain, a subject many autistics are familiar with. Many of us live with ‘comorbids’ that carry a heavy price tag – pain – which are often mistaken for Autism itself but they are actually just leeches, parasitical hangers-on, sucking the life blood from us, nothing to do with autism at all.

There isn’t much more to add to this exquisitely painful beautiful piece of writing by Rhi, but just a few questions, suspended mid-air, nebulous, ominous, diaphanous, whirling and twirling, wheezing and teasing, with no beginning and no end.

What if the “I” here (in Rhi’s writing on pain) is always – constantly without reprieve or remission – in intense physical pain? What if the “I” still has to perform in the grand show, the “I” still has to plough through the thick stabbing fog of pain – daily, nary a minute’s respite – while performing the unnatural as naturally as possible? What if, ultimately, there is no Clement Space available into which to retreat and repair. What then? The screaming is reduced to a constant hum, almost silent, compressed, suppressed and repressed, it has no voice, no outward channel of expression, no ability to reach for human help apart from tiny interstices of raw, exposed impatience and irritation which are misunderstood anyway, and too hastily placed by non-autistic observers into the “challenging behaviour of autistic people” box? Is it any wonder that autistics prefer the company of animals, of elemental connections, instead of the un-empathic assaultive drudgery of inter-human interaction?

Scheherazade’s Sea (2010), Roaring Whispers (2013), Little Sweets (2014), and Sonata in Z (2015) were all tiny glimpses, pianissimo enunciations, mere drops in an ocean of tumultuous booming that is the state of living with pain. No, it’s not autism that fragments and crucifies the autistic soul, spirit and body. It is the ever too present (for many, not all) stranglehold of pain that slowly and surely wears us down. As if coping with normative constructs and harsh alienation isn’t battle enough. We don’t “live with autism” or “suffer from autism” – autism is simply our state of Beingness, a crucial encompassing part of us that lends the pulchritudinous ability to view and experience the world in all its elemental dynamic glory, visceral and intellectual at the same time. If anything, autism is the ultimate saviour, if anything can atone for the wretchedness of existence, crucified at the Cross of Normativity. It is Living with Pain that is excruciating. And ultimately destructive. Autistic or not. But for the autistic with heightened senses, pain propels the Being into extremes from which there seems little hope of escape.

Still… in the words of that Irving Berlin song that wrings (no spelling error here) and writhes in my headspace: “There’s no business like show business” – so, “Let’s go on with the show!”

Footnote: Here are the lyrics in case readers cannot access the youtube video. Apologies, but I haven’t the spoons left to punctuate. Maybe this might give the song that added punch of pain, sifting through a huge volume of words without punctuation. Enjoy the show!

There’s no business like show business Like no business I know Everything about it is appealing Everything that traffic will allow Nowhere could you get that happy feeling When you are stealing that extra bow There’s no people like show people They smile when they are low Yesterday they told you you would not go far That night you open and there you are Next day on your dressing room They’ve hung a star Let’s go, on with the show The costumes, the scenery, the make-up, the props The audience that lifts you when you’re down The headaches, the heartaches, the backaches, the flops The sheriff that escorts you out of town The opening when your heart beats like a drum The closing when the customers don’t come There’s no business like show business Like no business I know You get word before the show has started That your favorite uncle died at dawn Top of that, your pa and ma have parted You’re broken-hearted, but you go on There’s no people like show people They smile when they are low Even with a turkey that you know will fold You may be stranded out in the cold Still you wouldn’t change it for a sack of gold Let’s go on with the show Let’s go on with the show

prepotence

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Propped up by a broom.

A huge ‘hidden’ but acute disability of mine is something that many autistics share: executive dysfunction. Teetering at the edge of a cliff, there is that sensation of falling, and yet one is still on firm ground – if just only by a hare’s breath. The feeling of executive dysfunction, of running out of what they call ‘spoons’, being at the very thin and slippery border, that unstable, fine line between (a veneer of) absolute control and complete breakdown, is a queasy, heart-rupturing silent scream. Sometimes, the tasks can be the most rudimentary, things that people just do, as naturally as any spontaneous activity like brushing their teeth or picking their nose. For example, answering multiple WhatsApp messages one after another upon emerging from a three hour meeting, without mixing up the who, how, where, when details of doing and saying. Then again, most people do not have to do all this while trying to quell gurgling, seething, frothing nausea, sometimes even excruciating migraine headaches and sharp stabbing pain in the eyes and inner ear, all from sensory overload. For the autistic person with executive function challenges, dealing with ‘simple’ chores can often turn into a battle with large roaring monsters, and staying on top of things becomes a colossal full-body, underwater wrestling match with an invisible Leviathan. For me, this is especially overpowering if ‘things’ involve many different human beings who are interacting in ways that seem to my brain to be alien, diverse, fragmented and scattered. The more human interaction is in the pot, the more cruelly exacting the grand performance becomes. Making mistakes is an inevitable and frightening feature in this unmerry-go-round. The ringing of the phone or the pinging of message notifications have become Pavlov bells of agitation and vexation for me. I have a horrible white-hot searing fear of sending messages to the wrong people, or not remembering certain details when people ask questions outside the ‘compartments’ in my mind that I’ve created for them. A person messaging me directly, taking a conversation outside a group chat but asking me questions that (in my mind) belongs to the group chat, can quickly send my brainwaves into wriggling, jiggling, wildly gyrating spams. I panic – why I do not know because it is not logical to panic – and of course I end up replying with either some garbled nonsense, or wrong information, simply because my mind has short circuited.

Even the most ‘expert’ of non-autistic ‘experts in autism’ fail to notice the subtle nuances of executive dysfunction and mental-sensorial overload as it happens in real time. In fact, I have yet to meet a non-autistic ‘expert in autism’ who can actually ‘expertly’ communicate with the autistic me. It is usually I who have to make all the necessary overtures – performing the unnatural as naturally as possible – in order to get any meaningful communication across. And autistics are supposed to be the ones ‘impaired’ in social interaction and reciprocal empathy?

This is how my autistic executive dysfunction plays out. On the surface, nothing is noticed. Not yet. There I am, deep underwater in the miry depths, engaging in mortal combat with that Brobdingnagian of Executive Dysfunction, but people sauntering by throw nary a glance at the pond, and nobody sees the tiny desperate bubbles bursting silently as they make contact with the aerosphere. All is cleverly concealed, until my spent and bloated corpse makes its way upwards, causing a huge blister on the placid surface. Then comes the shock and even derision. The accusations too.

People can be ‘aware’ that autism means a difference in neurological function. People can even be ‘aware’ of the terms “sensory overload” or “executive dysfunction” etc. But people have little or no idea how to identify the actual unpacking of all their ‘awareness’ in real time, especially if the autistic person is labelled by the non-autistic world as “high functioning” (not rocket science to figure out why I detest functioning labels, is it?). All this Autism Awareness with its fanciful labels is therefore as useful to me – an actual autistic person – as Blahblahblahdittydoodada. And this, while mildly comical, is not at all funny.

I’ve said this before and I’ll say it again. I am autistic. I love what I love with intense, all-consuming passion. And I am great at doing what I am great at doing – even rather brilliant. But I find the simple activity of keeping track of WhatsApp messages so difficult that I have developed a phobia for the sound of a message notification.

Prepotence in uncomfortable co-existence with decrepitude.

reflets dans l’eau

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stille nacht

2018 was unexpectedly obstreperous and brutal. A vast, swirling, seething, somewhat inebriated ominous monstrosity ingurgitating every attempt at hopeful rejuvenation, each ounce of vim and vigour slowly inhaled into its impenetrable mucilaginous dark cavern, leaving limp, brittle skeletal remains crackling in the sizzling heat of unrepentant tyranny, unrecognisable construal of once fierce passionate and spirited determination.

Advocacy has extracted its ponderous price. What irony, for one who never set out to be an advocate anyway. It is too arduous and violent for gossamer wings, too loud for tender ears, too rough for quivering fingertips.

Yet, where there is life, there remains slithers of flickering hope. And my life is not yet over, albeit saved time and time again by a Canine Angel whose existence beside me surpasses all reason, all logical apologia.

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whispering hope

My minuscule whisper to the grand cosmic gyration for 2019? Time to reflect, rest, and retreat gracefully into Clement Space: art-making, embracing pulchritude, tasting each nuanced fluttering of time moving rhythmically through wordless interstices.

shifting sands

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2018 is coming to an end. Another year has gone by. Laboriously long yet flashing by almost unnoticed. Ironic and paradoxical, yes.

What is “family”? Who are “friends”?

The frames have shifted through the years, sometimes shuffling along unfolding slowly and other times abrupt and sharply decisive. People once considered family have now drifted into the nebulous dark mists of hell and damnation, frothy flotsam and jetsam, haphazard filigree patterns on a dirty old blanket. Demarcations have moved, and others once existing in a blurry background now come into focus. Friends, too, have come and gone, riding wave upon wave of change.

This Autistic Bunny is happier than ever before, more content with the noshments on the buffet table than any previous memory serves. The ghosts of Christmases past still flit around, awkwardly slashing the benign atmosphere as if in feeble attempts to remind me of their continued existence on a blighted and beleaguered earth. Yet, they fail to cause any real damage to Clement Space – an ecology of grace, comfort and wellbeing.

The world rages ever on and on, angry swirls of unmet expectations, unfulfilled striving, and the quest for more and more, and yet more – bringing with it a vicious cycle of destruction and chaos, jealousy and meticulously sharpened hatred.

Yet, for now, despite and perhaps even because of the trepidation and uncertainty, tribulation and impecuniosity, threat of loss and prospect of stark challenging change, a ‘newfound’ (over the last decade or so) clarity has arrived, of the various components and constituents of love, goodness, loyalty, acceptance and undeserved favour.

And… for now… very much treasured, every single moment of this blessing, I have Lucy Like-a-Charm.

Meandering thoughts for the season. Thank you for wading through this with me. Wishing Every Bunny a Beautiful Holiday Season!

only an expert

The Autism Grand Circus Industry has grown out of proportion. Tiresome and tiring, depending on where one happens to be standing. Everyone claims expertise – from the Autism Mom who has written a few books based on their observation of their own child/children and now goes around giving talks and dishing out sage advice about autism, to the learned non-autistic professional with many degrees in Autism, everyone is an expert dealing with the Autism Problem. Everyone, that is, except the Actual Autistic person. Autistic people are mysteriously ignored and sidelined in the Autism industry. A phenomenon so strange that it is almost eerie.

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Can magic mushrooms cure autism?

Talking about bone-chilling, I recently found this in a webpage of a business specialising in “treating” autism. The alarm bells rang loudly when I saw “Chelation” and “CD Water”. Then I did some research on the various “Dr” people named in this letter, and found them all to be promoting expensive dubious ministrations aimed at “shedding”, “recovering” and “overcoming”. Some of these involve injecting the autistic child with unregulated substances, others focus on dietary interventions, all couched in complex-sounding pseudoscientific terminology. Is your blood curdling yet?

ARN screenshot

An autistic friend of mine has been valiantly trying to educate parents about snake oil sales pitches, dodgy programmes and harmful approaches to fixing the autism problem. Very brave person indeed, because he was variously derided and chided, treated like a foolish child, instead of someone worthy of respect. I often wonder, do these same parents even have the mindfulness to ponder this: If you treat autistic adults this way now, what kind of world are you preparing for your autistic child to grow up into? Is this how you’d want others to treat your autistic child when they become autistic adults? Or are you gambling all you’ve got on the great “cure” casino floor, thinking it’s going to be fine, your child will be rid of autism by the time they become adults, and hence they will not have to face this kind of demeaning and crushing ableism?

I honestly find it difficult to fathom what goes on in these parents’ minds – there, I admit it, I lack Neuronormative Theory of Mind! It is excruciatingly difficult to be thusly illogical and unthinking. Yet, I am told I should empathise a little more, “slow down” and allow others to catch up. My doctor says it’s good for my heart – you know, that strange squishy squashy rhythmically driven organ responsible for pushing blood around the body? Yes, that one.

Perhaps 2019 will be a year of “slowing down”, but in a different way: that is, finding Clement Space inside gentle things, wondrous connections and conversations with the material universe. I love my autistic world, it is a pulchritudinous eco-system, but the crass, grating vibrations of the normative realm is at odds with autistic tranquility. Too many experts. So little space for Beauty.

reciprocate

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I dance because I cannot walk…

Should a disabled person have to apologise for not performing according to ableist constructs?

Should a wheelchair user apologise for not zipping up steps and not running marathons?

Should a deaf person apologise for using sign language instead of the spoken vernacular?

Should a blind person apologise for feeling, touching, smelling and listening to the world instead of seeing the way the sighted do?

Why, then, should an Autistic person apologise for not performing to normative social standards?

Who writes the librettos? Who pens the symphonic blue prints?

Look me in the eye!

Don’t stare at me for goodness’ sake!

Sing when you’re told to sing.

Stop singing when you’re told not to sing.

Do not flap, you look silly!

You need to learn to self regulate!

You’re crying for nothing again.

Can’t you see I’m hurting, how insensitive can you be?

All the world’s a stage… but who directing the Grand Theatre?

mommy dearest

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Eat this, darling, it’s good for your Autism!

Why are so many autistic adults upset about and with “Autism Moms”? Why do so many autistic adults (myself included) seem to speak so ‘harshly’ against Autism Moms? And why are so many autistic adults broken, devastated, crushed, traumatised and yes, suicidal?

It is a collective hurt, a cultural pain and trauma suffered by the Autistic Community, that is embedded deeply inside our Being. No other group of disabled persons in recent years has been subjected to such forceful and sometimes even well orchestrated multi-dimensional assault, exploitation, misrepresentation, patronising condescension and stigma as Autistics.  Everyone is an expert on Autism, except the Actually Autistic. Continue reading

describing torment

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clement juxtapositions

Dogs are amazing creatures. Their ability to adjust, accommodate and survive never ceases to intrigue me. Too often, despite trauma and abuse, dogs nevertheless seem able to rise to pulchritudinous grace, something which I long to be able to learn and adapt to my own fragile humanity.

Here is something I wrote this day three years ago, describing in words – though most inadequate – what sensory overload is like in the midst of trying to live and survive inside normative-dictated frameworks and prescriptions. There is sadly very little ‘clement space’ for the autistic entity inside this overwhelming overstimulating normative world – well, almost none at all.


 

13 November 2015 at 18:38 Continue reading

Autistic Thriving @TEDx Pickering

 

“Autistic Thriving” – Dawn-joy Leong & Lucy Like-a-Charm. (Captions available on Youtube – please turn on cc option.)

Apologies for not posting this earlier.

“Just what you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?”

awful spectacle

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I posted this in my Official Facebook Page on Friday. It was a reflex reaction to having viewed two terribly humiliating and degrading videos of a young autistic child having a meltdown, recorded and uploaded to one of the many Autism Parenting Support groups in Facebook, by one of the many self-styled Autism Mom Guru types. Continue reading