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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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.

yellow!

Children's-Biennale-PosterInvitation-to-Children's-Biennale

The Dress Code for the event says to wear Yellow. I like dress codes. I like codes. I like structures and frames. They do not limit creativity, but rather create important space within which to be creative. These parts of social interactivity do not bother me, in fact, these are the ‘railings’ that help me to craft my spontaneity. Yes, you read that right. Improvisatory music is not something that is spewed forth willy nilly by ‘talent’ alone, it consists of years and years of finely honed, well practised and internalised riffs, sequences and phrases. The beauty of improvisation is the ‘how’, the ‘style’, the way the musicians brings forth these snippets of minutiae to form the whole, which is what the listener hears. Performance and performing are part and parcel of the joy of engaging in one’s Passion, interacting with it, and expressing it to others.

Anxiety is a different thing altogether. This, and other pressing matters, kept me in a state of restlessness all night and early morning. Well, actually, Anxiety has been pretty rapacious lately, devouring mind and body. I lay in bed, engulfed within an all too familiar nauseating sensation of slurping and sloshing viscera inside fragile cavities, with Lucy’s warm, pulsating presence my only comfort and solace.

Lucy is unwell, and I will not be taking her with me to the event today, even though this place (the National Gallery) is truly one of the most progressive inclusive public spaces in Singapore. Her bright yellow mindDog vest would’ve been just right for the theme.

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Lucy @ I-Opener, Playeum

My brain found this composition at around 4am (ish), and I laid it all out later in the morning after breakfast. Doing this helps resolve the tension in my mind, which occurs when I have a complete concept ready to be executed but have not yet arrived at the time and place for doing so.

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New yellow frames

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A very old top from ‘Shanghai Tang’

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Fuchsia skirt with yellow lining

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Lime Green handbag

OK, so the lime green handbag – a gift from my baby sister – isn’t yellow, but I think it’ll provide some gradation of sensation and I love the fun, cheeky sequinned motif on the front. I shall wear my gold embossed Ferragamo ‘Audrey’ shoes with this ensemble.

Gold Audrey

Shoes are of grave importance to me, I have had many a battle, some quite fierce, with footwear since an early age. It hurts to wear these things, but they are a necessary evil, to protect against other even more nasty evils that lie in wait to ensnare, cut and graze my sensitive feet as soon as I step out of the safe confines of home. I love the feel of soft fresh grass underfoot, and I still remember the delicious sensation of running around barefoot in the garden of my childhood home, but I live in an apartment now, and I don’t trust grass that isn’t ‘mine’.

Much ado about nothing, you might think? Perhaps, to the normative world, it may seem so, but this ‘nothing’ is actually filled with so much minutiae, detailed connections, intricate complex constructions, rhythms, patterns, and systems, that it really does demand much to do and feel and think about – if you notice it all, that is. This is my ‘normality’ – an integral part of this particular Autistic Female’s quotidian ‘mundanity’, which is anything but humdrum, to be sure. The price Autistics pay each day of our existence is a high one – sensory anxiety is just one small facet, there are myriad other eclectic existential quirks that possess both enthralling beauty and powerful terror at the same time – but I would not exchange this for a life cushioned inside a bland, insipid and pedestrian existence.

I am quite exhausted from the whole exercise, so I shall have to rest a bit before launching into the Grand Mêlée later in the afternoon. Actually, I’m really looking forward to it, despite the gripping anxiety and energies spent on planning and creating order from the chaos it (anxiety) has created. I only feel unsettled at having to leave Lucy at home, because she is unwell and I cannot be there to watch over her. It’s a small thing, mild runny tummy, a bit of reaction after Thursday’s cartrofen injection at the vet’s for her arthritis, and I know she’ll be more comfortable at home, and mum will be there, so Lucy will not be alone. I refuse to work Lucy when she is not feeling top notch, even the slightest thing matters to me – yes, a disabled person with a poorly cared for assistance dog has called me “dogmatic” but I don’t mind that label, because it means I care deeply and passionately.

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Rest well, my Princess.

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.

no business like show business

I read this blog post by the amazing Rhi this morning. “Performing Pain” – about the autistic experience of pain, a subject many autistics are familiar with. Many of us live with ‘comorbids’ that carry a heavy price tag – pain – which are often mistaken for Autism itself but they are actually just leeches, parasitical hangers-on, sucking the life blood from us, nothing to do with autism at all.

There isn’t much more to add to this exquisitely painful beautiful piece of writing by Rhi, but just a few questions, suspended mid-air, nebulous, ominous, diaphanous, whirling and twirling, wheezing and teasing, with no beginning and no end.

What if the “I” here (in Rhi’s writing on pain) is always – constantly without reprieve or remission – in intense physical pain? What if the “I” still has to perform in the grand show, the “I” still has to plough through the thick stabbing fog of pain – daily, nary a minute’s respite – while performing the unnatural as naturally as possible? What if, ultimately, there is no Clement Space available into which to retreat and repair. What then? The screaming is reduced to a constant hum, almost silent, compressed, suppressed and repressed, it has no voice, no outward channel of expression, no ability to reach for human help apart from tiny interstices of raw, exposed impatience and irritation which are misunderstood anyway, and too hastily placed by non-autistic observers into the “challenging behaviour of autistic people” box? Is it any wonder that autistics prefer the company of animals, of elemental connections, instead of the un-empathic assaultive drudgery of inter-human interaction?

Scheherazade’s Sea (2010), Roaring Whispers (2013), Little Sweets (2014), and Sonata in Z (2015) were all tiny glimpses, pianissimo enunciations, mere drops in an ocean of tumultuous booming that is the state of living with pain. No, it’s not autism that fragments and crucifies the autistic soul, spirit and body. It is the ever too present (for many, not all) stranglehold of pain that slowly and surely wears us down. As if coping with normative constructs and harsh alienation isn’t battle enough. We don’t “live with autism” or “suffer from autism” – autism is simply our state of Beingness, a crucial encompassing part of us that lends the pulchritudinous ability to view and experience the world in all its elemental dynamic glory, visceral and intellectual at the same time. If anything, autism is the ultimate saviour, if anything can atone for the wretchedness of existence, crucified at the Cross of Normativity. It is Living with Pain that is excruciating. And ultimately destructive. Autistic or not. But for the autistic with heightened senses, pain propels the Being into extremes from which there seems little hope of escape.

Still… in the words of that Irving Berlin song that wrings (no spelling error here) and writhes in my headspace: “There’s no business like show business” – so, “Let’s go on with the show!”

Footnote: Here are the lyrics in case readers cannot access the youtube video. Apologies, but I haven’t the spoons left to punctuate. Maybe this might give the song that added punch of pain, sifting through a huge volume of words without punctuation. Enjoy the show!

There’s no business like show business Like no business I know Everything about it is appealing Everything that traffic will allow Nowhere could you get that happy feeling When you are stealing that extra bow There’s no people like show people They smile when they are low Yesterday they told you you would not go far That night you open and there you are Next day on your dressing room They’ve hung a star Let’s go, on with the show The costumes, the scenery, the make-up, the props The audience that lifts you when you’re down The headaches, the heartaches, the backaches, the flops The sheriff that escorts you out of town The opening when your heart beats like a drum The closing when the customers don’t come There’s no business like show business Like no business I know You get word before the show has started That your favorite uncle died at dawn Top of that, your pa and ma have parted You’re broken-hearted, but you go on There’s no people like show people They smile when they are low Even with a turkey that you know will fold You may be stranded out in the cold Still you wouldn’t change it for a sack of gold Let’s go on with the show Let’s go on with the show