finale – SYNC Day 5

Day 5 of the SYNC programme came and went. The going was at times ponderous, because the body was weak and felt like a sack of potatoes, trudging, groaning, creaking and sighing. But I was a tad sad that time had passed so quickly.

I did not bring Lucy, because I had a dinner appointment later that day, and the long hours would be too much for her. But I missed her terribly – it was visibly hard for me to get through the day without her. Our programme coach and instructor remarked that the difference in me was obvious.

There was much learning, pondering and reflecting – but I will not delve into that here. These little snippets are sensory-focused, they are about my sensory experiences of SYNC.

Here are the few photos I took on Friday. No Lucy, so not much inspiration left.

Food. There was a lot of food. Thanks to Maureen and the kind folk from Very Special Arts (VSA). One artist brought their retired guide dog – she is a lovely sweetheart, but such a huge contrast from Lucy’s still, quiet, regal poise. There was a bit of to-ing and fro-ing settling the dog down, and occasional froufrou noises generally made by the owner telling the dog to calm down, which actually stirred the air so much that it had the opposite effect on the poor dog. Methinks some basic dog handling 101 (training) is needed here, for the human, not the dog. At one moment, I walked by and the darling dog got out from her ‘tuck’ position under the table, sat on my feet and leaned resolutely against me, refusing to budge. Anyone who understands some basic doggy body language would know what that meant. My heart goes out to the dog each time I see her. But the smell… I cannot deal with stinky dogs. So very very sorry, darling.

I was a little sad that the week went by so quickly, even though I was already exhausted right at the beginning, and nearly fainted from fatigue twice on Friday afternoon.

Enabling Village is a beautiful place – despite its tacky and almost inappropriately ableist name. We were welcomed every morning by the friendly security people – especially Lucy, which is a marked difference from most other places in Singapore. When I arrived on Friday without Lucy, the lovely men asked me where she was and why I didn’t bring her. One of them whipped out their mobile phone and showed me the photograph that he’d taken of Lucy the day before, on Thursday. They kept saying how beautiful she is, and how still, calm and gentle. I should come here more often with Lucy, perhaps?

The village is a strange place, in other ways, though. Heavy doors make it difficult, if not impossible, for people in wheelchairs to get through on their own. Mirrors in the ladies’ toilet are positioned so high that people in wheelchairs can only see half their reflections. There is no soap dispenser in the disability toilet – do they think that disabled people don’t need to use soap to wash their hands? There are no electric outlets in the training room – how do they expect disabled people with electronic devices to charge their equipment when using the training rooms for long periods of time? And the big bugbear I have? There is no quiet or calm room for people with disabilities – only a “carer’s pod” for carers!!! Isn’t this place for and about people with disabilities?

Sigh.

Nevertheless, having something like Enabling Village at all is a big step in the right direction for Singapore, I guess, though it also shows very starkly that we really do have a very long way more to go.

gotcha! – SYNC Day 4

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Day 4 – Happy Gotcha Day! Today marks the seventh year of our journey together.

Another intense day at SYNC programme. I am utterly physically exhausted, but it was good.

Here are some images captured from our day – there was no fanfare, but a quiet confident gratitude, celebrating the life-changing event of Lucy’s arrival. There needs be no more words for such clemency.

si bon, si bon! – SYNC Day 3

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Day 3 of SYNC.

I am not going to talk about the course itself, but will just prattle away about my sensory experience. So, be prepared for fragments, bits and bobs, and gyrations going hither tither without much finesse.

I didn’t get enough sleep last night, so arrived with puffy eyes and even puffier face. I found a blob of doggy poop in the grass when Lucy was doing her own toilette, and I picked it up. I didn’t want people to think it was Lucy’s, so we trotted back to the security post at the entrance to have a little chat. Turns out that some people do bring their dogs here. Most inconsiderate of these dog owners, though. I cannot understand why people ruin pleasant environments and then complain that there aren’t enough dog friendly spaces around. For Lucy and me, it is such a relief that the security staff here are super friendly and welcoming. They remembered us from the last time. They even took photos of Miss Lucy to show their friends and family. One of them showed me pictures of his Dachshund too. It’s a somewhat tacky name, where our SYNC programme is being held, “Enabling Village“, but it’s turned out to be a sweet, gentle space for us.

Well, my creaky old body wasn’t very cooperative today, it decided that pain would be the punishment for the punishment. Never mind. A small price to pay for a push in the right direction. It’s not that I am learning anything revolutionary, but I really like that this course is framing everything neatly without breaking my already exhausted brain. Very useful for when I need to ponder kinks in the tapestry every now and then.

Oh, yes, I like that we have frequent breaks and there’s decent food – it’s not lavish five-star hotel banquet fare, but it all sits well in the depths of digestion. The effort taken by organisers really adds to my appreciation too – we even have afternoon fruits served up washed and cut!

Things do get a tad noisy at times – artists are passionate folk – and my head hurts from the loud, exuberant chatter, but the cacophony is never aggressive. Perhaps I’ll make use of the quiet room tomorrow.

Another little ‘clemency’ is the grass patch just outside our seminar room. It’s lovely just being able to take Lucy outside for little strolls during break times – harkens back just a teeny weeny little bit to our days in Sydney, where we’d go for a toilet break and a stretch every so often during the course of our day working at our studio on campus. Nowadays, every small association is precious – that was a time and space in our life that we will never have the chance to revisit together. It is now imperative that I cherish every new unfolding moment we share, as the sense of urgency grows.

No more throwing my hard won pearls into the bog of snarling, grabbing, self-serving gnashers. The recent wake-up call was timely.

C’est si bon!

Lucy in sync – SYNC Day 2

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I spy, with my beady eye???

It was Day 2 today. I am glad I brought Lucy. She alerted me to my nausea and dizziness when the room became a tad stuffy.

Being in a room with fellow artists with disability is in itself a daring and provocative thing – but this kind of provocation is good. We – by our combined presence – challenge one another and the collective whole to reflect, identify and frame our practice of leadership.

I am exhausted, but yet refreshed and energised at the same time. And Lucy created Clement Space beside me.

Photographs from Day 2:

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in sync – SYNC Day 1

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My autistic brain wanted to rearrange this, but my sensory overload just ate it instead.

Syncopating synchronicity. A homecoming. Returning to grace. Active, inspiriting, body-mind-soul connecting with intrinsic approbation.

Yesterday was the first of five days of rigorous physical andragogy. No, I am not training for a Iron Man, but it did feel like it to my old body, floppy with misuse and pushed beyond the limits, running helter skelter for purposes not directly beneficial to me.

I am one of a group of artists in the SYNC Leadership Programme, brought to Singapore by the British Council, Singapore International Foundation, Very Special Arts and collaborating supporters.

When an eclectic collection of highly-charged, dynamic and tenacious artists with disabilities cram into a small room together, a different kind of ‘normal’ is constructed. Our artistry is varied, each vastly dissimilar from the other, as are our personalities, backgrounds, styles and art forms. Yet, we are connected by the intoxicating electric charge of Artistry and all this encompasses in its multifaceted expressions.

The gruelling demands on my body were partially mitigated by the gastronomic infusions – plentiful, yet not so overwhelmingly lavish that my sensory brain is driven into a state of confused shock. Simple, straight forward and manageable abundance.

And I cannot describe with words right now how exquisitely, incorruptibly peaceful – yet almost Lucullan in its graceful gestures – this is to my soul. I am looking forward eagerly, despite the physical punishment, to the next few days. Scheherazade is rising yet again.

Sensory photos from Day 1.

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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

bloviation & the sacrificial lamb

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bloviating babble bubbles

I learned this new word from my friend Rick. I like it. It has a robust movement to its physical form, flow and force. It sounds and feels like thick copious slimy globules arising from a pit of bubbling sludge. This word has a sensorial constitution that matches its meaning. Thank you, Rick!

“Bloviation” – such a proliferate and aggressively dominating activity in the field of Autism and Neurodiversity. Autism is a trendy topic these days, isn’t it? Everyone – from the housewife ‘AutismMom’ to the Professor in Psychiatry, and the outright quacks touting ‘cures’ and ‘healing touches’ mushrooming like unbridled viruses in between – seems to be dancing vigorously around the jolly campfire of Autism.The word makes me think of the many (I have lost count now, it is a long and wearying list) instances of having to silently endure protracted lectures, workshops, conversations, discussions, seminars, forums, conferences etc where non-autistic / neurotypical, so-called ‘experts in the field’ (with ‘decades of experience’ working with countless autistic persons, of course) blather on and on, expounding theories constructed out of little or no insights from actual lived-experiences, confidently spreading erroneous or inaccurate ideas and information, without due citations from progressive science or quoting from old and outdated studies, musing in hyped-up dramatic tones, and performing plastic rituals that ooze tokenism… Continue reading