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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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!

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

concatenate

A massively overloading day. I made it through the first part because of Lucy. We attended the second Opening of I-Opener at Playeum this morning. It was heartening to see so many people at the event, and I was so glad that everyone seemed enthusiastic and supportive, and our work as a whole was very well received – but my senses were screaming with silent horror after the first half hour, and the shrieking crescendo broke the fortissimo barrier by the second hour.

When Peter, our friendly RydePet regular favourite ride came to pick us up at the end of the two hours, I was already in a near catatonic state, my headspace ringing with the imprint of dissonant cacophony. Strangely enough, I was still able to prattle away in the car with Peter and my friend Jacky, who was riding with us to the next event of the day. Was I already going into a state of disconnect?

I left Lucy at home, and Jacky and I went to attend the Peter and the Wolf show. Two of our friends, Cavan and Timothy, were in it, and Timothy’s mum so very kindly bought us tickets. But I couldn’t bring Lucy to this one. Ironic, because the venue is assistance dog friendly – Lucy has been there several times – but the show’s organiser’s “were not prepared” for us.

It was a fun show, the cast were great, and I even managed to smile for the cameraman after the show (he took a photo of Cavan, Timothy and me). But I had to scuttle away quickly after that, because my head felt as if it would explode and shatter into a million fragments.

Home at last with my Lucy, I crashed into a much needed two hour sleep, and woke up only when Lucy decided it was time for her dinner.

The headache is still doing its pounding thing, the two panadol insufficient to quell it. Time for an early dive into bed.

For people like me, some days, just making it through is a laudable achievement, something to be proud of. And today was a pleasant day. Really. I love my friends, so many came in a much appreciated show of support – in fact, I was so overloaded that I didn’t even see one of my friends, who brought her husband and son to the Opening. I didn’t know she was there at all, the sea of faces had melted into a bizarre Salvadore Dali landscape with an aggressive soundscape to accompany. Later, without Lucy, it was even harder to focus and I had to consciously and repeatedly pull myself away from the abyss of dissociation – the out of body sensation that overtakes when I am in overload. It was a day of positive social interactional vibes, but my senses just aren’t designed for this kind of activity. Especially not when I cannot have Lucy with me.

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Good Night, Every Bunny!

Lucy is now fast asleep in bed next to me. The little fragments of my Being are slowly shifting, shuffling and scuttling back towards each other, slowly joining and melding, slowly mending, inside this Clement Space of ours – just Lucy and me. The best soundscape in the world for shattered nerves? The rhythmic rise and fall of my Angel’s breath.

Good night, Every Bunny! And thank you my dear friends for helping me get through an actually really truly lovely day.

elemental embodiment

2012 red boots

This day seven years ago, I got on a flight from Singapore to Sydney to take up my PhD scholarship at the University of New South Wales College of Fine Arts, now called UNSW Art & Design.

I was not to know then, as I snapped this photo of my favourite Doc Martens boots with my trusty old iPad, sitting at the boarding gate in Changi Airport, that I was embarking on the most fulfilling and happiest years of my life. And I had no idea that I would finally find the companionship and love that I had searched for unsuccessfully all my life. Continue reading

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.

Autistic Thriving @TEDx Pickering

 

“Autistic Thriving” – Dawn-joy Leong & Lucy Like-a-Charm. (Captions available on Youtube – please turn on cc option.)

Apologies for not posting this earlier.

“Just what you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?”

spectres

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Today, those old familiars, you know, those ghostly wisps of Artaud and Wagner, my goodly pals that seem to follow me around and suck me into merry gyrations of bizarre comedic-tragic theatrics? Well, they paid a nice little surprise visit once again, of all times, during my TEDx speech. Continue reading

troll and roll

 

 

 

Social media is an amazing thing, really. Dissemination of information – false and true and somewhere in between – quicker than you can say your own name. It’s a great space for many people with disabilities to connect, sans the traditional barriers. Yet, it’s also a grand circus for explosive and nasty battles where humans exhibit their common human DNA, regardless of superficial differences. Continue reading