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?

ARN screenshot

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.

reciprocate

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I dance because I cannot walk…

Should a disabled person have to apologise for not performing according to ableist constructs?

Should a wheelchair user apologise for not zipping up steps and not running marathons?

Should a deaf person apologise for using sign language instead of the spoken vernacular?

Should a blind person apologise for feeling, touching, smelling and listening to the world instead of seeing the way the sighted do?

Why, then, should an Autistic person apologise for not performing to normative social standards?

Who writes the librettos? Who pens the symphonic blue prints?

Look me in the eye!

Don’t stare at me for goodness’ sake!

Sing when you’re told to sing.

Stop singing when you’re told not to sing.

Do not flap, you look silly!

You need to learn to self regulate!

You’re crying for nothing again.

Can’t you see I’m hurting, how insensitive can you be?

All the world’s a stage… but who directing the Grand Theatre?

describing torment

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clement juxtapositions

Dogs are amazing creatures. Their ability to adjust, accommodate and survive never ceases to intrigue me. Too often, despite trauma and abuse, dogs nevertheless seem able to rise to pulchritudinous grace, something which I long to be able to learn and adapt to my own fragile humanity.

Here is something I wrote this day three years ago, describing in words – though most inadequate – what sensory overload is like in the midst of trying to live and survive inside normative-dictated frameworks and prescriptions. There is sadly very little ‘clement space’ for the autistic entity inside this overwhelming overstimulating normative world – well, almost none at all.


 

13 November 2015 at 18:38 Continue reading

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?”

ingannation

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ingannation
(IN-gah-NAY-shun)
Noun:
-A cheat, trick or clever deception.
-The act of making someone believe something that is not true.
-The act of deceiving someone.
-The fact or condition of being deceived.
-Something that deceives.
-An act or statement intended to make people believe a falsehood.

Archaic – origin unknown.


 

I promised my good friend Rick that I’d make good use of this word. So, here is my take on the old, obsolete word, now démodé.

I’ve been thinking about lies and deception today. What is the most prominent, most soul crushing feature of my recent journey that focuses so much on advocacy? Ingannation. Continue reading

special

THIS VIDEO! Yes! I couldn’t have said it better.

I cringe at the term “special needs”. It has never settled comfortably in my mindscape. Whenever the normative world employs this term, it has always felt like a tiny slap in the face, imperceptible to the “not special” people who view themselves as “more special because not disabled”. Calling us “special” in that way gives the normative a kind of authority, a Colonial power, over the “special people with special needs”.

At the age of 53, with a PhD that won the very highest award given to only one top candidate a year, I am still met with saccharine condescension whenever I reveal the already widely known fact that I am autistic. Continue reading

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.

Scheherazade bobs along

There were times I really thought I’d not make it through, and perhaps even that I wouldn’t survive life itself. But it was completed, a mission accomplished. And now, after waiting and pondering over the grand cosmic challenge of it all, I have decided to upload into my website. Because I wanted this work to go out there, to anyone who wanted to access it, and to any soul who may benefit from some or all of it.

Here’s my PhD Dissertation. No musty academic book will contain the exuberance of life and grand comic theatre of my journey. Peruse at your own risk!

Scheherazade’s Sea: autism, parallel embodiment and elemental empathy. 2016.

haunted

I am not at all superstitious, so this is, to me, rather hilarious. I am talking about the ‘spirits’ that have been lurking and stalking me lately: Antonin Artaud and Richard Wagner in clown outfits no less. Right, yes, I have a vivid imagination, and I do have some really bizarre dreams too, but this coincidence is ridiculous.

Tech-Fail again!!!! I am talking about yesterday’s groundbreaking super amazing event that a group of us managed to conjure up and bring in a full house as a bonus.

Disability Led Practices 2018 copy

We belong to a Facebook group interested in the subject of disability studies. Someone posted an advertisement for a story telling workshop charging $200 to teach disabled folk how to tell their own stories. Some of us remarked that they shouldn’t charge so much, then I jokingly said that we could create our own event about disability and our stories, one suggestion led to another and it snowballed into a real ‘thing’. There was a time constraint, one of us needs to head back to Chicago to continue his PhD study when term starts again, so we had to make our event happen before he leaves. I was mired in the preparations for TEDx and didn’t have time to really pitch in with solid work (read about the TEDx fiasco here). I reached out for help from the Disabled People’s Association and as always they were happy to support us. All we needed was a venue – which took some time to secure. Finally, less than two weeks before our intended event, one of the team managed to wrangle a freebie from the Singapore University of Social Sciences. Phew! With that little time left for publicity, I wondered if anyone would attend. We were charging $10 per person to help pay for various things like sign language interpreters and a note taker, refreshments etc. Nail-bitingly scary, but guess what, Full House!!

Anyway, back to my comedy with those two guys, Artaud and Wagner.

AV all went perfectly fine for the other four speakers, but when it came to my turn (I was doing the wrapping up), midway through, the eerie stuff returned. My slides won’t show, the videos won’t play and the screen went fuzzy and psychedelic – very trippy! Well, it was yet another opportunity to tell the audience my funny story about what went down at TEDx. This time, however, I was not at all irritated or annoyed. The team member manning the technical equipment is not a professional, and I could see the poor chap trying valiantly to restore some order to the screen. It was actually funny, unlike my TEDx experience. Why? Because of expectations and the frame within which each event occurred. TEDx prides itself as a professional event, I put myself through months of preparation and regular rehearsals at my own expense, I also forked out good money to bring Lucy and myself to the tech rehearsal the night before, and they were supposed to have a professional crew looking after the technical side of things. So, microphone failure in the middle of my speech, playing the wrong videos, losing my videos, and then playing the correct video without sound – these mistakes, to me, are unprofessional and inexcusable. But yesterday’s event was a casual one, put together by non-professionals, just like-minded people sharing a common passion, each of us pitching in however we could. Very difference scenario, don’t you think?

It had to be me… I can hear myself singing that song in my head even now. I blame it on Artaud and Wagner. They do seem to follow me around. Never a dull moment, it seems. My life is a grand theatre of strange juxtapositions.

Yesterday, we had great fun. We learned from one another. We shared our stories to at least 55 people in that room. I was inspired by my friends to try harder to make everything more accessible to people with different disabilities from mine. To think outside of my own bubble. And I hope we collectively inspired others in the room to do so too.

“Presume Competence! It is not hard to do!” This phrase is quoted from my TEDx speech. It will be something I keep in mind henceforth.

We are now looking forward to our next event.

Disability Leadership has begun in Singapore! At last. We didn’t wait for organisations and the establishment to do it for us – I doubt if they ever would, despite talking endlessly about “inclusion” – we did this ourselves. We – disabled folk and allies – are proud of ourselves. And thankful to those who support us. Each and every person who turned up yesterday – Thank You!

P.S. Here is what I had prepared to speak on yesterday, my speaker’s notes. I’ve added some extra videos for a bonus 🙂