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.

lucy+art+food

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What do a black Greyhound, multi-art expression, and food have in common?

They are all close to this Autistic Bunny’s heart.

Autism advocacy. Disability advocacy. Trying to throw open the windows of tightly closed minds. Mistaken as threat. Tokenised and patronised. Writhing and spinning round and round, ploughing the miry fields of repetitive human social-political gyrations. Trudging through the cesspools of normativity. Wiping away the spit of jealous competition, meandering through lies and subterfuge. The burden of participation in humanity’s Theatre of Absurdity can wear the trembling soul down, and the spirit is too easily crushed and fragmented under pounding cacophony of noisome people-ing.

Continue reading

empathy overload

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I read this article about dogs and expressions of empathy, and my thoughts immediately linked to the empathy overload that many autistics report experiencing – feeling so much of the other person’s pain that one is frozen or implodes and unable to react in a way that displays gestures of comforting or soothing to the other person in distress. This gives rise to the misunderstanding by normative brains as the autistic person lacking empathy. (No outward display of huggy-kissy-aw-you-poor-baby stuff that non-autistics seem to expect and perceive as having empathy.)

This passage jumped out at me:

“During the task, the researchers measured the dogs’ stress levels. Sanford said dogs who were able to push through the door to “rescue” their owners showed less stress, meaning they were upset by the crying, but not too upset to take action. As for the dogs who didn’t push open the door, it wasn’t because they didn’t care — it seemed they cared too much. Those dogs showed the most stress and were too troubled by the crying to do anything, Sanford said.”

‘Taking on the mantle of pain’ so to speak. Lucy seems to do this when I have had meltdowns – she freezes and just stares at me – and somehow, because of this, I manage to self-soothe enough to get out of my meltdown state. I am brought back into the moment by her presence and driven by my empathy for her empathy to resolve my pain reaction, simply because I do not want to see her suffer from my suffering. Does that make sense? Dogs can teach us so much about our humanity.

Finding Me

 

Sometimes, life takes a longer time to provide concrete tangible answers, but the concepts and rumination begin many years before the advent. This song was composed and recorded in 2000. Lucy entered my life in 2012. I waited 12 years for my Canine Angel to help me see Me.

Thank you, Lucy Like-a-Charm. My cosmic gift of clemency. Continue reading

ancient voices

Disabled by the ability to perform the Other, at expense to Self.

The more energies spent on perfecting performance as Other, the less strength left to exist in Self.

Self is dissipated, disengaged, and exhausted

Inside this space, this hollow interstice, Self becomes nothing.

Un-performing is desperately necessary, to peel away rigid, harsh layers of coarse fabric. It is a difficult process, even excruciatingly painful at times, because these binding cloths so tightly wound have melded into growing flesh. Stubbornly embedded foreign bodies, artificial corns and callouses interwoven. Which is artificial, which is nature now? Nobody can tell, not even the disabled Self. Yet, that longing for Being, that yearning for a clement space of empathic resonance and elemental connectivities, is so deeply entrenched in our spirits, the Ancient Voices of our nascent souls.

Survival is paramount. So the decapitated and maimed carry their appendages in glass bottles, like ancient Chinese eunuchs, cringing silently in grandiose palatial hallways, scuttling to and fro, agony hidden, even festering in gilded cages.

“Ancient Voices of the Children” by George Crumb is a haunting work, featuring selected poems by Federico García Lorca. When I first heard it at the age of 19, as a music undergraduate student at university, I fell deeply in love with the music and poetry. Even then, undiagnosed, it spoke to me with such cogent poignancy. Will the autistic soul ever truly find their lost voice? The King of the Crickets has commandeered it.

The Little Mute Boy

The little boy was looking for his voice.

(The king of the crickets had it.)

In a drop of water

the little boy was looking for his voice.

I do not want it for speaking with;

I will make a ring of it

so that he may wear my silence

on his little finger

In a drop of water

the little boy was looking for his voice.

(The captive voice, far away,

put on a cricket’s clothes.)

**

“Ballad of the Little Square”

My heart of silk is filled with lights,

with lost bells,

with lilies, and with bees,

and I will go very far,

farther than the seas,

close to the stars,

to ask Christ the Lord

to give me back

my ancient soul of a child.

 

Federico García Lorca – 1898-1936

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

bloviation & the sacrificial lamb

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bloviating babble bubbles

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

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.