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 🙂

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

the dilemma of trauma

 

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One week of excruciating physical pain. Stress reaction. A serious one. I was caught by surprise this time, I didn’t expect my body to react so viciously.

I was physically assaulted last Sunday. By someone I know. The person has admitted to me it was a psychotic episode. I am psychologically and emotionally intact, but my physical body has reacted fiercely from the traumatic shock.

Last Sunday, I attended a theatre performance. I was standing outside the theatre, in a basement lobby teeming with chattering voices bouncing off pristine white walls, waiting for the show to begin, when a pre-show drama literally exploded in my face. Continue reading

layers

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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.

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