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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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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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

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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.

out of whack

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Fluffy

After three full-on gruelling days, APAC19 (Asia Pacific Autism Conference 2019) is over. It was an amazing and even sometimes exhilarating event – a first of its kind in Singapore where actual autistic people permeated all but the very top mesosphere at an autism event. 1,800 people gathered in the massive Resorts World Convention Centre all with the common goal of learning more about Autism and how autistic persons and those around us can best thrive.

I wrote a mini summary here, and uploaded some of my own photos, so go check it out.

Now to face the aftermath of all that dizzy positivity: my sensory system has been thrown completely off kilter, of course. Which autistic person doesn’t understand what I mean? Not one, I’d wager, though the specifics may be different for each individual.

For me, I’ve developed an insatiable appetite – it’s my mouth, my tastebuds and olfactory nerves all going chomp-chomp-chomp without care for or connection with the rest of my body. The brain is craving sensory comfort so much that it doesn’t want to acknowledge the other sensations like, well, a too-full stomach. I’m having trouble with my own physical signalling, as if I shall float away if I didn’t firmly anchor myself somewhere and somehow.

Oh, and the insomnia is deafening. I can hear everything whirring in randomly orchestrated high-pitched pretentious screech-fest in my headspace. Tones and microtones meandering, crossing, greeting, clashing, intertwining and looping.

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And those bizarre lights at the convention centre, they’re gyrating and creating a bit of drama. My eyes have not stopped hurting since – I can feeling the muscles tensely squeezing around the eye socket – and my vision is blurry.

I need Clement Space. In bed now, listening to Lucy’s breath, softly undulating, her warmth emanating so reassuringly.

I must attempt to sleep now. Good night, Every Bunny!

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angel

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angel (June 2019)

Listening
Whirring fridge
A-flat
Human laughter in the wind
Slightly off C
Sudden dull thuds
Quickened heartbeat
A flash of white
Searing fear
Sirens scream
Inside the cavity
Of acid green
What is that smell?
Nebulous, acrid
Footsteps pounding
Headspace resounds
Broken B
Chairs dragged
Across cheap tile
Shattered F-sharp
Quivering interstice
And then amidst the chaos
Here in my bed
An angel’s breath
Comforts me

(9 June 2014)

pancakes & jelly beans

 

I don’t know why my brain produced that title. There are no pancakes or jelly beans in any of my photographic offerings here today. The words were just echoing inside, wriggling and jiggling among the other bits and bobs, and so I decided I’d let them out to dance around. Perhaps something to do with switching modes from the ‘seriousness’ of advocacy etc to the now ‘lighthearted’ topic of food and friendships?

Food is an integral part of fellowship for humans, methinks. I miss our weekend noshment adventures with friend Rick, mostly in Paddo, though he did travel to Kensington for the dire period when Lucy and I were trapped in that not so suitable environment. And of course, when we were forced to move to awful Rose Bay, Rick valiantly came to our mental rescue. Thanking the cosmos for really great friendships, without them I’d not have preserved even this little semblance of my ability to function! Continue reading

With Us

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Lucy Like-a-Charm in Clement Space – Sonata in Z, 2015

“For us without us” or “Nothing about us without us”? More and more, I am meeting non-autistic allies who are standing alongside our advocacy and lending strength and dynamism to our cause. Here in Singapore, there has been an ‘awakening’ of sorts too, but we have a long way to go before we can achieve deep rooted progress at the very most fundamental levels. We are a very ‘progressive’ city – judging by what’s visible to the eye, at least. We do know how to do things well, if we want to. And we’ve done so many things extremely well. For one, I am immensely proud of our airport. There’s no need for me to sing the praises here – you can look it up anywhere and everywhere. I’m also pleased and relieved that people don’t have to fear being gunned down randomly on the street or in school. We’re by and large a pretty safe city to live in, and I’ve lived in a few rather pleasant cities too, but none with the kind of placid security that Singapore has. I am also really encouraged by the many positive changes that have taken place in the disability sector – the higher levels of awareness and desire to learn better ways – even within the short span of the last two years that I’ve been back. We are a robust little nation, and this is proof that we can do things quickly if we decide we wish to.

OK, so, here, today, I am talking about Autistic equity and autonomy. Continue reading

clement Saturday

Too hot for walks, mumma!

Today, I woke up somewhat off-kilter. Lucy was unfortunately in sync with me and didn’t even want to go out walking in the early morning. The heat this month has been really depressing. Too much to-ing and fro-ing in the last few days, methinks. Sensory overload happens even when I am enjoying myself. I have a headache, sore throat, and there’s something not quite right along my nasal passages. I just want to be with my Lucy. The family have gone out for lunch and grocery shopping: the two little fluffies in their bright green buggy and mum in her super Wheelie (we call mum’s wheelchair the Wheelie), my sister, brother-in-law and their helper.

I’m now waiting for my FoodPanda lunch delivery – Hainanese Chicken Rice set from a restaurant nearby. Lucy and I could’ve walked there, of course, but this is Singapore and if you’ve never been here, you have no idea how assaultive the weather can be at this time of the day. Well, at any time of the day, actually.

While waiting, I played the “waiting game” with Lucy – I place a treat near her nose, and tell her to “wait”. She must not touch the treat until I say, “Okay!” She is a good girl, even when it’s her favourite cheesy biscuit! Now, Lucy has moved to the day bed and she is chewing on her Venison ear. I am listening to the rhythmic crunching, munching and gnawing sounds she is making. It’s all music to my ears, even the squeaky juicy sounds emanating from the air-conditioning sounds pleasant. All is good and clement. Just Lucy and me here. Clement Space for Two.

Oh, is that the FoodPanda guy now? I hear his motorbike downstairs in the carpark.

Hainanese Chicken Rice set with KaiLan and soy sauce egg.

This one is for you, Rick. In memory of our Saturday noshments! Have a dogly weekend down under and say hello to Paddo from us.

aggression oppression

 

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I am an artist, musician and a researcher. I am not an ‘Avenger’ or any comic book hero. I am no sword-wielding warrior. I am merely a reluctant Advocate – I dream of a world wherein there is no more need for disability advocacy because disability will just be accepted and embraced as part of natural human diversity – but I know advocacy is crucial in the here and now, else we the disabled will never have equity and autonomy. Without advocacy, I would not be able to practice my art, music and research, because of my known disability. Continue reading