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.

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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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.

Continue reading

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

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?

special

THIS VIDEO! Yes! I couldn’t have said it better.

I cringe at the term “special needs”. It has never settled comfortably in my mindscape. Whenever the normative world employs this term, it has always felt like a tiny slap in the face, imperceptible to the “not special” people who view themselves as “more special because not disabled”. Calling us “special” in that way gives the normative a kind of authority, a Colonial power, over the “special people with special needs”.

At the age of 53, with a PhD that won the very highest award given to only one top candidate a year, I am still met with saccharine condescension whenever I reveal the already widely known fact that I am autistic. Continue reading

activism, advocacy vs clement space

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Yawning angel

This Autistic Bunny is not mired in meaningless repetition from “having autism”. This Autistic Bunny is mired in frustrating, seemingly futile repetition due to the utter lack of empathy and/or regard of the non-autistic world. Especially the ones who congregate around the money-spinning, job producing, status boosting Autism Bandwagon. Armed only with the medical model and little to no understanding of lived-experience, they declare themselves ‘experts’ and sell their ‘expertise’ in myriad ways to desperate ignorant non-autistic parents, students in institutes of higher learning who start off wanting to do good and make a difference, peers in academia who know nothing so just readily accept the viewpoints of these ‘experts’, and politicians in positions of governmental power.

What kind of ‘Autism Crisis’ is this? Not created by autistic persons for sure. But autistics are trying their best to clear the flotsam and jetsam that is being tossed around in seamless repetition by the non-autistic world. How do we even move forward one step at a time, when each step is a perilous risk?

To be clear, I say this again. I am not an Autism Activist. I advocate, somewhat passionately and vigorously, only because there is so much rubble strewn across each and every pathway that I need to clear the rubbish before I am able to venture forth. One just cannot safely and smoothly walk along paths that are chockfull of hazardous waste. I am no expert in bomb disposal, and I’d much rather have safe spaces to live in so I can focus on creating my art and doing meaningful workshops to help people, but what else can I do if the way forward is a minefield? Each day, I feel I am neglecting the very Being that is keeping me alive, giving me sustenance in a way no human creature ever can. I long to retreat into that space of clemency where I can commune with my Lucy in our soul enriching elemental empathic way. Yet, I have to sally forth into that awful domain of autism advocacy, speaking the truth where nobody dares or wants to, and all just to ask for basic respect and true inclusion.

I do worry about being blown up someday by one of the mines I am trying to clear. I do this for myself, for other autistics, and mostly to benefit the next generation. 

What kind of world do you hope for your autistic, neurodivergent and/or disabled child to live in, what kind of tomorrow? Today is not good enough. We need to work on a safer, gentler Neurocosmopolitan world.

…. yes… But what am I doing to and for the Pulchritude that lies in my bed so steadfastly preferring life-giving energy to this tired autistic soul? I owe her a debt I am never going to be able to fully repay. My Lucy Like-a-Charm.

Autistic Thriving

 

“How can autistic and non-autistic people grow and thrive, not despite but because of the unique features of autism? And what can society learn from autistic persons?”

Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018, talking about autism and neurodiversity. Come join us!

…….

[Autistic Thriving – Dr. Dawn-Joy Leong]
There is a great deal of ‘awareness’ these days about Autism – mainly from non-autistic observations. However, where are the Actually Autistic voices in this cacophony of opinions and interpretations? What is it like to be autistic? Discover how Dawn learns to thrive within her autistic ecology, not despite but because of her autism.
Grab your tickets here: https://tedxpsthrive.peatix.com/
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[自闭世界的生意盎然]
自闭症在当下取得了广泛的关注,只不过这些观察结果都是从非自闭症患者角度获得的。可是抛开这些不和谐的观点和解释,我们从何听到自闭症患者的真实发声?作为一个自闭症患者是什么样子?在这场演讲中,Dawn会向我们分享她是如何在患有自闭症的情况下茁壮成长。