dedication

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This blog is dedicated to:

My canine angel, Lucy Like-a-Charm.

My baby sister Althea, her wonderful hubby Robin, and her two furry boys Bizcuit & Tiny.

My loyal friends YS and Rick.

Without you, there would be no adventure, no narrative, no amazing tales to tell.

deliciate

Deliciate: to delight oneself; to indulge (in feasting or other revels)

Old words fascinate me. And this one is a timely balm to a fractured, frayed and frazzled soul. (Yes, I also love alliteration. Part of my sensory ‘stimming’ – calming, even if just for the rhythmic enunciative physical qualities.)

This is one old word that I’m longing to luxuriate in.

Sometimes, the cosmos interferes vigorously, even sharply, for my own good, especially when I have been self-destructively obtuse, obstinate and obscurant – inwardly – denying what ought to be glaringly obvious, covering my ears to the roaring whispers of ratiocination. A knock on the head was needed to wake me from my self-induced somnambulism. This thunder-clap on my thick skull came from a remark made by an autistic man, expressing an utterly selfish viewpoint with foot-stomping petulance and digging in of the heels with so much defensiveness that it was almost bizarre. I was shocked and disappointed at first, but I realise now that, inside a deeper consciousness, I already and always knew this side of him. I had merely been blinded by my enthusiastic hope that the person would change, that I could make a difference in this person’s attitude and learning journey.

On another level, I am sad that he did not even discern that my advice to him would actually serve to advance his own (albeit selfish) cause even further if he took it on board. Sometimes, we need to do some things that seem a waste of time, in order to gain other things, which may be less immediately tangible. When I offered that piece of advice, I was referring to proper protocol and professionalism, not selflessness. But who knows what really goes on in people minds, autistic or not? It was my own error of judgement that led me to this feeling of shock and disappointment, and I own it honestly. The person did not change, and is unlikely to change. My very first, immediate and direct sensing of him was absolutely accurate after all – I just deluded myself into thinking otherwise. My bad entirely. And it is timely that I am forced to detach and back away. Any later and I’d be not only more burnt out from all the time, energy and resources spent on a thankless mission, but worse than that I’d be inextricably bound to someone whose ideology is vastly contrasting to mine. For example, it would be professional self-destruction to be seen by the world as endorsing a product I do not firmly believe in, and which has potential to go rogue.

Anyway… I am relieved and pleased now. What is of import to me is that this served to tear apart the heavy veil that I had been erstwhile enshrouded in, and allowed my soul to emerge into the light.

A process in the making, but it took a small, innocuous rending to break forth, but the details of which need to be unpacked in another musing, not this one. Right now, I just want to dwell on healing and restoration, which the last five days at the SYNC Leadership Programme has galvanised and propelled me towards.

What are the things that heal my soul? What are my cosmic and intimate priorities?

Cast aside the inutile to-ings and fro-ings that tear apart fragile refined tapestries – it is Time to indulge and revel in little appogiatura and melismatic undulations once more.

Simple things – little details and observations.

 

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Edible things – because I love food!

 

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Time-tested things – appreciating loyalty, trust and connectedness.

 

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Lucy Like-a-Charm and all things Lucy – my lifeline.

 

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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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WTF is #Neurodiversity?

Everyone is jumping on the Neurodiversity Bandwagon these days. How can we pick out the gold from the dross? Here is a Golden essay by Alex Forshaw. Read this and ponder.

My Autistic Dance

Bust of an Ancient Greek, a people renowned for thinking about the complexities of human existence

Neurodiversity seems like a big thing right now, but what is it all about? And what’s with all the various neuro-this and neuro-that?

Neurodiversity

I’ll do the easy bit first: neurodiversity is the simple, observable fact that human minds are different from each other. Just like the variety of living organisms, which we call biodiversity. Same thing, only we’re talking about brains rather than plants and animals.

Neurodiversity by itself doesn’t say whether or not this is a good thing: it’s a neutral term that describes what we see when we observe human minds.

So what?

If that was the end of the story this would be a really short essay and you’d wonder why I even bothered writing about it. The fun starts when you pick up the neurodiversity ball and run with it. When you start asking yourself what it means, both for societies…

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what the spoon?

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Photo by Dawn-joy Leong. Please do not reuse without prior permission, thank you!

I’ve said many times I am a reluctant advocate. I wish there was no need for vigorous advocacy – because this would mean that society has progressed to a place where people (at least the majority) are not only aware of differences in embodiments, but actually actively embrace and practice the effort of empathic reciprocity across divides. Peace. That is. Empathic resonance inside a Clement Space of Peace.

Autism Advocacy is one of the fiercest, most contentious arenas in the disability field. I cannot think of any other disability that is so copiously mired in greed, personal ambition, powerful corporate agenda and human pride and prejudice. And I do not mean only the vested interests of the Neuronormative World. Autistic persons also take advantage of this platform to further their own ambitions. And why not? Since the arena is a free-for-all dominated thus far by non-autistics, why can’t Autistics now use their own platform to further their aspirations for whatever it is they yearn? Money? Fame? Employment? etc.

I’m the last person wanting to set a moral tone. My protest has always just been that of tiredness and utter disappointment in humanity – regardless of neurological identification.

The one thing I am learning from all of the churning, heaving and tumultuous goings-on is this: everyone – myself included – has an Agenda. But not many – neurotypical, neurodivergent or autistic – can truly understand when an agenda departs too far from their ‘norm’ – their sphere of thinking. Who’d believe that I have done all these rather radical things, exposed myself in such grandiose and sometimes even bizarre ways, pushed myself to the very edge of my perimeters, just for a naive and simple agenda?

Singapore.

People repeatedly ask me if I have gained higher professional standing, garnered more paid employment, and generally benefited in positive ways, as a result of my many public appearances on television, in the news, etc. My honest answer is no. All my professional achievements have been built upon the foundation that I had painstakingly laid years before I returned to Singapore. A decent portfolio of solid work. Relationships built upon straight forward decent hard work and trust, humility to learn from those who dared and bothered to teach me, and a lot of patience. Nothing to do with the superficial ‘stardom’ that people see. That – the media presence, the pomp and ceremony somewhat crass even – was all for the sake of Autism Advocacy, and if anything, I have suffered personal loss as a result.

Dealing with neurotypicals in the autism platform, I am met with suspicion and the usual jaundiced eye, not to mention patronising condescension and tokenism. My ‘unfiltered’ communication style has earned me a reputation – not necessarily a welcome style especially not at all in Asia. This is my so-called “social impairment”. Yes it is a serious impediment here. Don’t forget also the dodgy snake-oil peddlers and ‘cure’ brigade whose toes I have trodden on in my fight to inform and educate. On the other hand, while dealing with autistics, I have met with petulance, inflexibility and a puzzling determined absurdity, almost echoing of the stereotypes slathered upon us autistics by neurotypicals that I have been trying hard to debunk. Holding open heavy doors to learning opportunities, I am met with autistics grumbling about their $2 spoons, and various other permutations and combinations of such. Oh, and the competitive jealousy and envy too. From both sides of the Grand Neurological Divide. The catch phrase shared by all – neuronormative or autistic – when called out (and even when not called out, they actively and vehemently volunteer this snippet of wisdom):

“I’m only human.”

I despair. Too much – too often. What about my humanity? What about my spoons? I do not know what to feel or think, to be honest. All I do know is, more and more, I am driven back to hankering for my childhood dream. My Original Agenda, if you like.

When I was a child, at the teeny itty bitty age of six, I had already identified this sense of hapless hopelessness in my own reaction to the human species and human constructs. My dream at the time was to create a Utopia – just me and my animals, living in a cave deep inside nature, far from human intervention. Of course, that was ridiculously naive of me, and as soon as I became aware of the necessity (to me) of running water and flushing toilets, I abandoned that dream. (Yes, I even studied how to make my own toilet but it proved too daunting due to my hyper olfactory senses.) But the spirit of this yearning has stayed with me throughout my life, a longing for an impossible Clemency of Space.

Three years on since my return to my beloved homeland, I am truly happy that I did what I did, with the help of many key mentors and supporters within Singapore and overseas. And I am eternally grateful for the friends – loyal people and wise – whom I have undeservedly gained. But what I have been unwilling to admit – until now – is that the personal price was a heavy one. Apart from being variously mistaken for someone who is seeking attention and vain-glorying, or a militant ‘Autistic Threat’ out to take over the world, I realise that in my thankless quest for this nebulous “peace” agenda, I have neglected other things I hold much dearer to my heart. I have neglected good friends, and the one Being most precious to me – Lucy. And I have faltered in my own pleasurable and soul enhancing pursuits of art, music and research – my own Autistic Joy that nourishes me and builds me up from inside out. I guess my throwing all my Spoons on this advocacy mission, vision or whatever else one wishes to call it, has been my own downfall. This was my Grand Agenda for three years. An impractical one, I know. Impractical and impracticable it seems. But the dichotomy is this:  I am an artist, a musician and an academic at heart. So dreaming isn’t really something I can just will myself to stop doing. It is inexorable as the process – a life of its own. As for those damned Spoons, ah well, c’est ma vie. Win some and lose some – spoons will be spoons, humans will be humans, and I shall always prefer dogs.

Regardless. It is time for me to refocus on what really matters: ‘world peace’, ‘the greater good’, bridging the Neurological Divide, ‘Nothing About Us Without Us’, and all that stuff sounds amazing and lovely, even seriously valuable, but I must not forget that I owe a monumental cosmic debt to Lucy. And it is one that if I do not start trying to repay now, I will lose this Divine Opportunity for Grace forever. Lucy grows ever older as I run around lavishly spending our spoons helter-skelter – yes, you read correctly, these spoons belong to Lucy too and I am spending them on everything other than her. Humans are intrinsically selfish. Aren’t we? I am blessed to have such a patient teacher and mentor as Lucy Like-a-Charm. So, all the more, I must not betray her faith and trust in me. I owe to this unassuming, wordless creature my very life. Again, something very few humans are able to come close to grasping.

Onward Spoons then, Tally Ho! The Spoons are marching ever forward – but now with a Renewed Agenda, and rightfully so. Woof! Spoons for Love! Spoons for my Canine Angel. Yay to Spoons! Our spoons! To spend on Us!

theatre & survival

oil self portrait 1

Self Portrait – 2008.

Autistic ‘Masking’ is now at last being studied in earnest, and I am especially interested in the context of Autistic Women / female presenting Autistics. As far back as I can remember existing, I recall the consciousness of being different, an almost painful palpable awareness of the need to observe, learn, be vigilant and ‘on point’ in order to navigate the horrifying confusion of the ‘outer world’.

Growing up undiagnosed had its pros and cons. Whichever way it panned out, I am here today, and I am at last comfortable in my Beingness.

It’s funny how people’s perceptions of one can be so very different of one’s own – and for me, it is all about my Autistic Masking, my theatrical presentation of Self to Other, and the lack of empathic resonance of Other to Self. Empathy impairment does not belong solely to the autistic, though for too long this has been the dominant subjugating myth.

Some old friends refuse to believe I am Autistic. Even new friends, including a prominent brain scientist (not a neurosurgeon but a scientist studying the brain). Just because I do not present like Temple Grandin. That has me rolling in laughter, because their response is a reflection of how little they know me and how little they know autistic people and Autism (in the case of the brain scientist and other ‘experts’).

For other friends who did somehow grasp the edgy essence of my embodiment, my revelation of the diagnosis did come as a welcome ‘Aha!’ moment.

The Autistic Female who presents with any measure of self-confidence is not far different from any other woman who comes across as unwilling to wear the societal stigma of shame. The difference is that autistic females presenting this way are ironically much more vulnerable to becoming prey to sociopathic persons in multidimensional social realms – from familial relationships to friendships and beyond. Because evil always manages to sniff out innocence.

I call it “Performing the Unnatural as Naturally as Possible.” The dark side knows this performativity and they will do all they can to capture and own such naive brilliance.

Well, recent conversations with some old and new friends in separate situations have unearthed an interesting dichotomous juxtaposition.

This is the external perception of who I was before, in my younger days, and for new friends, this is what they perceive or imagine that I used to be too, as embodied in Ta Ta Young’s “Sexy Naughty Bitchy”. Perhaps it was the self-confidence on the surface? The flamboyant dressing? The theatrical persona? The meticulously studied and finely honed performance skills?

It could be flattering, I guess, but my Autistic brain does not compute the compliment at all. I am merely fascinated by the social experimental element and the exercise in observation, and the almost clinical surreality of it all.

However, the following was and is more my reality. It was all about Survival. Everything outside my Autistic Clement Space of Being has been and remains survival. Surviving social abuse, surviving colonisation of mind, soul, body, surviving as intact as possible, remaining as true to Self as one can, in the face of overpowering odds.

Two versions of the same me, from different vantage points, both sharply accurate and both utterly rebellious in its blend of quiet containment and unfiltered disobedience.

Today, I don’t need nor wish to mask anymore. But the years have already made an expert improvisator out of me. My ‘mask’ is already part of who I am. Yet, unlike some others, I feel no animosity towards this part of me, no self-loathing despite the tumultuous Artaudian-Wagnerian journey. I embrace it as yet another facet of a rich existence, the entire embodiment of my eclectic Tapestry of Self that continues along its inexorable unfolding inside Scheherazade’s Sea.

Returning to Scheherazade’s Sea

Lucy Like-a-Charm

I cannot be all things to all humans – nor do I desire for such spiritual degradation. But to one exquisite Alternative Embodiment, I am indeed All and Everything. Wordless, faithful and steadfast, waiting patiently while I scuttled in hapless concentric circles; watching as I threw the precious pearls of our conjoined time into the miry bog of human pretensions; failing over and over again that dreadful Sally Anne Test, wearied, brow beaten, marginalised, yet stubbornly holding fast to clouds of lighted gas. Trust gained, so hard won, nothing but delusion, sliding down oozing greasy slope as rug is pulled from underneath with petty sleight of hand. What revelation – that ominous sinkhole never really was repaired after all, and blue dancing lights illuminate merely duplicitous display of pyrotechnic might.

Scheherazade Sea beckons once more – I can smell the delicate tremors of elemental empathy, it caresses so tenderly, drawing inexorably home into Clement Space, where I belong. It is time to cease from futile human meanderings, walk away from deceitful grotesque gyrations of do-gooding… and repay the debt of life I owe to Pulchritude, my Canine Angel, Lucy Like-a-Charm.