unspoken – my response to Uniquely Me episode 3

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I watched tonight’s “Uniquely Me” episode 3 – a docu-series featuring glimpses into different autistic lives in Singapore.

This episode is, for me, the most deeply confronting and profoundly gripping thus far. Maud and Edwin are twins, they are non-speaking autistics, celebrating their 35th birthday, together with their younger brother, who has learning disabilities. It could have been yet another emotionally cloying show about abject tragedy, or a piece of inspirational-porn about how heroic their mother is, for having three disabled children who need high levels of care. Yet, somehow, this mother transcends the swirling mire of theatrical wretchedness, walking with quiet, unassuming dignity beyond the temptation of sensationalism, and assumes a position of unassuming dignity. Of course, there are tears here and there, but this woman has my admiration for not succumbing to the dramatic, which so many in her position often do, given half the chance to express their pain to the world.

I watch Maud and Edwin closely, I read their faces, their bodies, their gestures, and I felt a corporeal, tangible and palpable connection with them at the most fundamental level of my own autistic Being. I’ve returned from a sensorially exacting social interaction, my throat is burning, sinuses inflamed, and head pounding. I cannot summon enough forceful intellectual, emotional and sensory strength to describe my experience of this episode in critical detail. My senses are raw, my mind worn, and I am inside an inarticulate near-wordless bubble, but I feel compelled to write this response, even if it were a brief one.

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Mother Emalin carefully lays out Maud’s favourite belongings, preparing for her home visit. It struck me, perhaps even with a tinge of envy, how deeply, passionately and steadfastly this mother loves and cares for her daughter. The meticulous arranging of her things, the acceptance that this is what makes Maud who she is, and doing it painstakingly because she wants Maud to feel comfortable and happy to be home. Maud enters, and walks around her home, reconnecting with the elements. As Maud rearranges the small objects in her home, tiny symbols of her ownership, performing her rituals so puzzling yet so familiar to her mother, who lovingly tries to grasp her communications and respond appropriately, I feel a ‘knowing’ – it is that elemental empathic resonance that I wrote about in my PhD dissertation – inside my Space of Mind. I do not feel pity at all, but rather a respectful connectedness. There are no semantic words worthy of this, any further attempt to explain the tingling, singing of tiny electrical messages would cheapen it. My sadness is for the lonesomeness of Being: Maud knows that nobody is capable of truly understanding her world, even as she knows her mother loves her.

Maud and Edwin sit together, side by side, sometimes touching, other times not, but there is a powerful bond between. They live in separate care homes. The narration does not explain why, perhaps the homes cater to persons with different specific and levels of needs? Edwin is blind, and clearly traumatised by a previous accident in which he broke his leg. Their once a month visits are obviously meaningful occasions to both. My grief is for the lack of better facilitation for this family to live more fully supported lives together, and not separated like this, though everyone in the centres are doing their best, as are Emalin’s two close friends.

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Once again, director BeeHar delivers a penetrating view, in the Singaporean context, without the kind of exaggerated melodrama that often proliferates most other shows like this. This is a window into the world of four gentle souls, linked together by a tender yet rugged kinship. I cannot weep for them, not because I do not see their obvious struggles, not because I do not feel their pain, but because they are not that kind of persons, and pity is not what one feels for such humble stateliness. My heart reaches out, it wants to touch them, it wants to say, “I know you,” and “Thank you for sharing this brief contemplation of your world.”

(More and more, now, I am wondering how my episode will turn out. I hope the director will show our similarities rather than differences, because I feel very much our Autistic Kinship of parallel embodiment and elemental empathy. Waiting for it on 11 June.)

regression aggression

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Lucy inside Qantas cabin 2016 11 26

I read with dismay and disappointment that Qantas no longer allows psychiatric assistance dogs on board. What was even more distressing, was reading the comments that followed the article in the The Australian.

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Screenshot.

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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.

perfidy

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Frightening mephitic essence of blatant tyranny oozing from every pore. Maleficent, flagitious, mockery of the Sacred.

I am contacted by representative of arts company to re-create my Clement Space installation in one of their rooms, an immersive, interactive exhibition that will run for 12 months. Two overly long meetings. A deluge of talk, talk, talk. Bubbly enthusiasm. Then, one month of anxiety-laden delay. Broken trust. Agreements ignored. And finally, The Contract.

  1. The company demands to co-own (in perpetuity) my Clement Space – intellectual property that has existed for three years as an established signature concept and creative work belonging solely to me, the Artist.
  2. The company demands to literally take possession of the Artist – body, mind and soul – for a period of 12 months, during which the Artist is not allowed to engage in any other creative work, unless the Artist applies in writing for permission from the company.

The payment: $3,500. Read it again. $3,500. No, not even $3,500 per month, which is an insult enough for an artist with a PhD and international experience. It is $3,500 for the entire year. Yes. For $3,500 they want to commandeer a piece of valuable property that does not and will never rightfully belong to them; and they want to play colonial master to the Artist subaltern for an entire year.

An exclamation mark at the end of the sentence fails miserably to represent the shocking impudence and preposterously brazen, flagrant attempt to contriturate the artistic soul.

Hence, I did not put one in.

What manner of heinousness is this? What goes on inside the bowels of these persons’ consciousness? How could they even have conceived of such terms and demands, such high-handed, ludicrous and impudent expropriation? And what kind of arrogance propelled them to put these thoughts into words – an official, legally binding document, no less?

And no, I am not ‘overreacting’ – my lawyer has had a look at it. A serious travesty, no laughing matter.

Of course, I asked for the clauses to be removed. I asked most politely too. Their response was a casual WhatsApp message:

“Good morning, thank you for your feedback and thoughts on the contract- they’re definitely justified, will revert back to you once we’ve deliberated. You have a good day.”

That was Monday. It is now Saturday. Not a hint of an apology. No admission of solecism. And no redrawn, revised, respectful and mutually beneficial contract. Does it really take a whole week to “deliberate” on how to be respectful and fair in your dealings? As if decency and fairness even need to be deliberated on? And how long does it take to strike out two outrageous sections from a contract? Very telling. And most disconcertingly so.

Artists are among the most oppressed and undervalued professionals. The arts scene can be spiteful, exclusive, elitist and ableist, and most artists are underpaid and overworked.

Disabled persons are also among the most maltreated and disrespected people in an ableist, elitist societal culture.

Put the two together, and we have Disabled Artists who are trying to survive under immense odds – compounded. We are asked to work for free, in exchange for “exposure”. Our needs for accommodation and support are brushed off and often even derided. Our requests and protests are delegated to the “Too Hard” tray, while large corporations and organisations milk the “Disability Inclusion” machinery, churning out facetious, spurious terminology like “Diffable”, “Differently Abled” and “Inspirational” – all entrenched in ableist ideology.

Disabled artists in Singapore deserve the basic, fundamental human right to protection against contumelious exploitation and audacious bullying. Enough is enough.

THIS is why we need a Disabled-Led Artists Collective. This is why I have committed my precious time, limited physical energy and scarce resources to leading Singapore’s first, with the support of the Disabled People’s Association (DPA) Singapore. This is why, if you are a disabled artist, I’d like to invite you to sign up to join our collective.

To find out more, please email me: dr.dawnjoyleong@gmail.com / dawnjoy@dpa.org.sg

Disabled-Led Artists Collective – call out

 

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Dear folks in Singapore interested in disability practice and study,

I am representing the Disabled People’s Association to lead a new initiative to form a Disability-Led Arts Practice Collective consisting of artists with disability.

I would like to invite anyone here who identifies as disabled and is an arts practitioner or is interested in becoming professional or semi-professional some day. If you are disabled and you do some form of art – visual art, music, literature, dance, theatre etc – please register to attend our very first disabled people only meeting this Friday, 7pm at DPA in Jurong Point – please visit this link to DPA’s website where you can find address and instructions on how to get there.

Even if you are not sure whether you may be interested to turn professional or semi-professional as long as you are disabled and practise some form of art as a serious hobby, you are also welcome to register to find out what we are doing. It is a first in Singapore!

Looking forward to seeing you on Friday!

Dawn-joy Leong.

To join us at our first session, please sign up at this link: Registration

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.

antinomy

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Starlight, star bright, what will you be tonight?

“You can’t be autistic! You have such good eye contact!”

“No, you’re not autistic are you? You’re so articulate and intelligent!”

“Amazing, you have such excellent credentials, I don’t believe you’re autistic!”

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Teetering on the edge of whose asininity?

“Oh, we’re sorry but we have a policy never to employ autistic people here.”

“Our apologies, but you do not suit.”

“I’m afraid autistic people do not qualify.”

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?

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