only an expert

The Autism Grand Circus Industry has grown out of proportion. Tiresome and tiring, depending on where one happens to be standing. Everyone claims expertise – from the Autism Mom who has written a few books based on their observation of their own child/children and now goes around giving talks and dishing out sage advice about autism, to the learned non-autistic professional with many degrees in Autism, everyone is an expert dealing with the Autism Problem. Everyone, that is, except the Actual Autistic person. Autistic people are mysteriously ignored and sidelined in the Autism industry. A phenomenon so strange that it is almost eerie.

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Can magic mushrooms cure autism?

Talking about bone-chilling, I recently found this in a webpage of a business specialising in “treating” autism. The alarm bells rang loudly when I saw “Chelation” and “CD Water”. Then I did some research on the various “Dr” people named in this letter, and found them all to be promoting expensive dubious ministrations aimed at “shedding”, “recovering” and “overcoming”. Some of these involve injecting the autistic child with unregulated substances, others focus on dietary interventions, all couched in complex-sounding pseudoscientific terminology. Is your blood curdling yet?

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An autistic friend of mine has been valiantly trying to educate parents about snake oil sales pitches, dodgy programmes and harmful approaches to fixing the autism problem. Very brave person indeed, because he was variously derided and chided, treated like a foolish child, instead of someone worthy of respect. I often wonder, do these same parents even have the mindfulness to ponder this: If you treat autistic adults this way now, what kind of world are you preparing for your autistic child to grow up into? Is this how you’d want others to treat your autistic child when they become autistic adults? Or are you gambling all you’ve got on the great “cure” casino floor, thinking it’s going to be fine, your child will be rid of autism by the time they become adults, and hence they will not have to face this kind of demeaning and crushing ableism?

I honestly find it difficult to fathom what goes on in these parents’ minds – there, I admit it, I lack Neuronormative Theory of Mind! It is excruciatingly difficult to be thusly illogical and unthinking. Yet, I am told I should empathise a little more, “slow down” and allow others to catch up. My doctor says it’s good for my heart – you know, that strange squishy squashy rhythmically driven organ responsible for pushing blood around the body? Yes, that one.

Perhaps 2019 will be a year of “slowing down”, but in a different way: that is, finding Clement Space inside gentle things, wondrous connections and conversations with the material universe. I love my autistic world, it is a pulchritudinous eco-system, but the crass, grating vibrations of the normative realm is at odds with autistic tranquility. Too many experts. So little space for Beauty.

activism, advocacy vs clement space

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Yawning angel

This Autistic Bunny is not mired in meaningless repetition from “having autism”. This Autistic Bunny is mired in frustrating, seemingly futile repetition due to the utter lack of empathy and/or regard of the non-autistic world. Especially the ones who congregate around the money-spinning, job producing, status boosting Autism Bandwagon. Armed only with the medical model and little to no understanding of lived-experience, they declare themselves ‘experts’ and sell their ‘expertise’ in myriad ways to desperate ignorant non-autistic parents, students in institutes of higher learning who start off wanting to do good and make a difference, peers in academia who know nothing so just readily accept the viewpoints of these ‘experts’, and politicians in positions of governmental power.

What kind of ‘Autism Crisis’ is this? Not created by autistic persons for sure. But autistics are trying their best to clear the flotsam and jetsam that is being tossed around in seamless repetition by the non-autistic world. How do we even move forward one step at a time, when each step is a perilous risk?

To be clear, I say this again. I am not an Autism Activist. I advocate, somewhat passionately and vigorously, only because there is so much rubble strewn across each and every pathway that I need to clear the rubbish before I am able to venture forth. One just cannot safely and smoothly walk along paths that are chockfull of hazardous waste. I am no expert in bomb disposal, and I’d much rather have safe spaces to live in so I can focus on creating my art and doing meaningful workshops to help people, but what else can I do if the way forward is a minefield? Each day, I feel I am neglecting the very Being that is keeping me alive, giving me sustenance in a way no human creature ever can. I long to retreat into that space of clemency where I can commune with my Lucy in our soul enriching elemental empathic way. Yet, I have to sally forth into that awful domain of autism advocacy, speaking the truth where nobody dares or wants to, and all just to ask for basic respect and true inclusion.

I do worry about being blown up someday by one of the mines I am trying to clear. I do this for myself, for other autistics, and mostly to benefit the next generation. 

What kind of world do you hope for your autistic, neurodivergent and/or disabled child to live in, what kind of tomorrow? Today is not good enough. We need to work on a safer, gentler Neurocosmopolitan world.

…. yes… But what am I doing to and for the Pulchritude that lies in my bed so steadfastly preferring life-giving energy to this tired autistic soul? I owe her a debt I am never going to be able to fully repay. My Lucy Like-a-Charm.

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

clemency & space

 

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

inside clement space

Dogs are amazing creatures. I never wish to anthropomorphise them, because they are more beautiful than human beings in my eyes, so why make them into inferior entities by ‘humanising’ them? No. There they are, inside clement space, the way anyone should be when enveloped in tranquility and equilibrium – around them there may be a hundred thousand different things clashing, crashing, turning, pivoting, whirling and reverberating, yet, there, inside their little cocoons of grace, they lay quietly resting. Renewing. Refreshing. Replenishing.

Lucy Like-a-Charm and her two ‘cousins’ Bizcuit and Tiny. Blessedness.

syncopation

 

 

Sensory syncopation. Buzzing dissonance. Muted vowels. Overwhelming consonants. All this and more, gyrating – determined and unceasing – in the thrilling, vexing and amazing sensory ecology of Hong Kong.

I haven’t been back in 6 years, not since my Haptic Autistry and Haptic HugShrug exhibitions. It was lovely to be back, on old familiar soil, yet with so much vibrant newness yet to explore.

Three lectures/talks, two public and one private, and a great many old friends to catch up with, kept my days buzzing with activity.

 

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A new adventure awaited in Sham Shui Po – gritty, old, traditional and crammed – where I would stay for the entire trip, in a windowless bedroom above the sensory theatre of wet markets, dim sum stalls, cooked and raw food shops side by side, vegetables and fruit, and … fish. I landed smack in the middle of unfamiliarity. It was a deliberate decision, I wanted to experience somewhere different from my old memories of my life in Hong Kong – and I got what I asked for. Picturesque, and I am glad for my nifty Fujifilm X100T, but the olfactory ambience was confronting, to say the least. The smell of pork – raw, uncooked pork – literally envelopes your entire being, pervading the air all the way up into my dark little AirBnB bedroom. Then there was fish, rotting vegetable, overflowing sewers, and human bodies seething with perspiration wrapped in unwashed clothes – thematic elements weaving in and out of the tapestry, as the basso continuo of pork pounded on and on.

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Elderly lady selling fish and vegetables

One picture carved into my mind, leaving me engulfed in a heavy, thick and excruciating wave of sadness and haplessness, is that of an old lady, bent double, sitting on a small stool, selling fish and assorted vegetables, just in front of the strong smelling butchery at the corner. Her catch differed every day, sometimes there were larger fish, other days small ones, even turtles and frogs (for consumption) and dribs and drabs of wilted vegetables and fruits – whatever she could get to sell, I suppose? There is rubbish strewn around the filthy wet street, and there she is, sitting there patiently waiting for customers. I wanted to give her some money, but was afraid she would be offended, and what good would my few dollars do for her anyway? She was there every morning, and I, a stranger and ‘alien’ to this ecosphere, felt a choking sadness, an anguished torment each time I walked by. Hapless. I can still taste the air, hear the soundscape echoing in my head, and see the spunky, brave yet forlorn image of this lady in my mind. Poverty is crushing to witness, and my heart breaks even more because she is so terribly old and frail.
Continue reading

softly yet

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Frenetic week. Confronting confrontation. Set aside a tiny aperture of Clement Space – beginning the day with quietude. Breakfast alone… local Hong Kong style, from the noisy lady around the corner with the paper hat – steaming hot dim sum … before launching head on into the chaos of the day.

Ah… Hong Kong… heady, head-smashing, overloading, amazing Hong Kong!

Goodbye 2017

 

Sometimes, the mind gets lost inside the mire of anxiety, like a hamster caught in an ever spinning wheel, so focused on the effort of running that one can forget to hop off the relentless vicious cycle. Feeling unwell from an unpleasant juxtaposition between Christmas feasting and irritable bowel syndrome, caught in the doldrums of self-deprecation, I was just about to declare 2017 a year of absolute non-achievement (yes, utterly ridiculous but that was my mindset at the time) when I decided to take a long, deep breath, sit down and make a list of the activities I had engaged in through the year. Truth be told, 2017 was actually a literal beehive of activity. I was surprised, duly chastised for my negativity, a tad shamefaced yet relieved – I needed that stern reality check! Continue reading