Sensory diary entry: I’ve been gravitating towards a certain texture of food lately. I find a sensory comfort and solace in it, a form of sensorial equilibrium unfolds and settles from inside out, while performing the delicious act. The Cantonese word for it is much more sensorially descriptive: 煙韌 yin ngan (jin1 ngan6). The term has two meanings in Cantonese. One refers to a slightly exaggerated, demonstrative, sweet intimacy between lovers, and the other describes the experiential texture of chewiness, in the act of ‘chumbling’ – I love that old fashioned word. There is a bounciness to this 煙韌 which I love, but I cannot find the appropriate English to do justice to the fulness of the sensation. You’ll have to chew on a 湯圓 stuffed rice ball, like a giant sago ball, or a Japanese mochi ball, to fully grasp the complete expression. A savoury version is the marinated mini octopus, Japanese style, though the octopus dish has less tensile ‘spring back’ in its bounce. Now, I’m hungry. Time to scuttle out for something chumbly.
I learned this new word from my friend Rick. I like it. It has a robust movement to its physical form, flow and force. It sounds and feels like thick copious slimy globules arising from a pit of bubbling sludge. This word has a sensorial constitution that matches its meaning. Thank you, Rick!
“Bloviation” – such a proliferate and aggressively dominating activity in the field of Autism and Neurodiversity. Autism is a trendy topic these days, isn’t it? Everyone – from the housewife ‘AutismMom’ to the Professor in Psychiatry, and the outright quacks touting ‘cures’ and ‘healing touches’ mushrooming like unbridled viruses in between – seems to be dancing vigorously around the jolly campfire of Autism.The word makes me think of the many (I have lost count now, it is a long and wearying list) instances of having to silently endure protracted lectures, workshops, conversations, discussions, seminars, forums, conferences etc where non-autistic / neurotypical, so-called ‘experts in the field’ (with ‘decades of experience’ working with countless autistic persons, of course) blather on and on, expounding theories constructed out of little or no insights from actual lived-experiences, confidently spreading erroneous or inaccurate ideas and information, without due citations from progressive science or quoting from old and outdated studies, musing in hyped-up dramatic tones, and performing plastic rituals that ooze tokenism… Continue reading
Lucy seemed restless this morning. She was lying in bed, watching me work at my desk, and suddenly did a little bounce and let out a mini yelp in my direction. I turned to look at her and she held my gaze, nodding her head, bounced again and made that same yelping sound. Lucy does that when she wants to communicate – she doesn’t bark at all in any other ‘normal doggy’ circumstances. When I first heard her bark, it was two months after she came to live with me, and out of the blue, one afternoon, she did that bounce + yelp thing, asking me to play with her. I’ve learned to recognise that. Continue reading
Tumultuous ocean, churning depths. Underneath pomp, ceremonious circus, lies dark churning death. Extirpating the soul inside writhing grief, bursting through blessed gratitude too copiously applied. Such ponderous agony, ‘neath layer upon layer of colourful luxury.
Executive dysfunction is a very real phenomenon – not to be scoffed at. The veneer of steadfastness belies gritted teeth, foaming nausea, weeping silently, hapless, atop mighty pedestal. Who sets the heights, lengths, and breadths for performativity? The Autistic in a constant state of unstable flux – crushed, tossed, fluffed, buoyed, then crammed into discomforting contortions – seeks determinedly for clemency of space, breathing in every small fleeting moment, as if a last and final breath.
Too much struggle brings chaos to sensory reception – hyper senses become all the more acute, but yet bizarre in rhythmic jaggedness. The brain seems to switch off some signals, while others hurtle along as if out of control. A multi-dimensional existence, so markedly conflicting, it is a wonder that there are not far more collisions and collapses.
Demons screaming at the door, thinly veiled agony that nobody sees, nor ought they to be cognisant of in case of unknown, volatile consequences.
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
Wriggling… awkward shifting, shuffling… navigating frothy nausea… think, dank fog…
How to craft Clement Space inside a constantly assaultive alienation? Minuscule foci. Small things. Split-second moments. Carpe diem! Each tiny aperture is a precious molecule.
Droplets of mercy and grace notes of consideration, respect and gentleness. These all are Clement Spaces, in the midst of monachopsis.
This morning, I travelled across my little island home from the central region where I live, to the western coast, to the Yale-NUS College library to set up my miniature Clement Space in the City (revised, 2018) installation. It is an impressive campus, not for its size, as it is a small one, but for its compact superficial beauty. There is a sense of crafted tranquility in its manicured greenery, right in the middle of smart modern buildings. Meandering around clean, crisp corridors, trying to find my destination, I wonder about the lack of clear signposts. Is it a deliberate exercise in subtle exclusion, a quiet ‘hint’ to outsiders that we are not exactly warmly welcomed into this carefully constructed environment for the elite? I do not really know, but I did have the thought that Lucy would’ve loved a nice run around the green grass patches, though she’d probably create bald muddy holes in the wake of her greyhound strides. Then another thought following this one was, “Is this beauty something to merely behold, or can we actually use it, run around in it, hug the trees, roll in the manicured grass, laugh, flap, stim and lie on it?” Continue reading
There’s a big storm in a cooking pot these days, huge outcry over the ignorant judging of a Malaysian dish by a non-Malaysian. So, what’s in a rendang? Plenty. Especially when judged by some self-styled ‘expert’ on a cooking show who has no idea at all what rendang is. Thus, all hell breaks loose. And rightfully so. We are guarding our cultural heritage after all.
However, why is it that Autism is being bandied about by non-autistic self-styled ‘experts’ without authentic Actually Autistic voices writing the libretto, and that is deemed ok?
Does this mean that Rendang Awareness is more genuine than Autism Awareness / AutismAcceptance?
I can literally hear it, the crunching, fragments rubbing against one another, breaking, jostling, resisting until they break yet again into smaller and smaller composites. The soul is an amazing, elastic creature, yet so fragile in its dichotomous existence. Crushed, overridden, derided, mocked, flung from one extreme to another, the dissonant chromaticism so excruciating, a wordless silent scream issues forth, travelling through time and space into the vast nothingness, pain with an ominous fermata riding mercilessly atop. Continue reading
Autism Awareness Month is going to sweep over us again, like a nauseating sludge – engulfing, choking, terrorising.
Awareness? Just like the cockroach in the room that one becomes aware of, that’s as far as it goes, this ‘awareness’ exercise. And autistic persons are being treated accordingly.
Parents, Siblings, Teachers, Peers, Autism Organisations… the list goes on… and round and round in dizzying concentric circles…
You write books detailing my vulnerabilities, my meltdowns, telling the world how terribly inept I am, using my dirt and mess as stark contrasting juxtaposition to your shining, glittery ‘suffering’. You can be you, this is you, this is how you deal with things, this is how you talk, this is how you react, this is just what is, so take it or leave it, but I cannot be me, because you are feeding me, housing me, and so you own my existence.
You kill me, it is murder, but because I am autistic, you become a hero instead, and the media is in a pity-party frenzy, not for me, but for you.
Do I even realise how stressed you are, having to care for my every need? Oh yes, I do. I am aware of much more than you care to even know about me. But what I think and how I feel are not at all important to you.
When autistic people protest, you tell us: Stop the drama!
When I try to explain myself to you, you tell me: Stop arguing!
When autistic people ask to be paid for work done, you tell us: Stop making demands, we ought to be grateful that you are going to great lengths to organise events on our behalf!
When I try to share my hopes and dreams, you mock me: Stop being ridiculous! You can’t even take care of yourself, what are you talking about?
Is my voice so broken? Are my words so devoid of sense? Is my Beingness so utterly despicable or laughable that you must use puzzle pieces to symbolise me? Or are you just not wanting to know my thoughts, not interested at all in who I am, because YOU are all there is and I simply should not exist? Without you, I am nothing. I cannot tie my own shoelaces. I cannot earn enough money to feed myself. Or… I cannot even feed myself. So I have nothing valuable to say. It is Autism Awareness Month, and you are making all the awareness on my behalf.
Cockroach in the Room. I am already much aware that you are aware of me. Awareness is a behemoth – overwhelming, overpowering, tyrannical – no room for negotiation, not even gentle co-existence. The Autistic is persona non grata. Deemed useless, hapless in the swirling vortex of Awareness.
Bring out the cockroach spray. Get the brooms ready.
We do not need more awareness, really, do we? We already are your filthy little cockroaches in the pristine normative room. And you are swatting and spraying at us every single day anyway. Let’s just do away with the pretext, shall we? Scrap Autism Awareness Month. We’ve been aware of your awareness for a very long time already.