watery graves

Slow streams of unconscious

Melting rubberbands

River of tiredness

Drying up the sand

Strength seeping

Knees weeping

Purple cobalt

Orange ochre

Sunlight making way

For bland leaden grey

And time runs down sink holes

To swirling watery graves

When even fragmented words in poetic paintings fail, music – that wordless communication of the soul and spirit – overtakes.

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.

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

monachopsis

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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.

Lucy.

Home-cooked nosh.

Friendship.

Music.

Art.

Goodness.

Kindness.

Droplets of mercy and grace notes of consideration, respect and gentleness. These all are Clement Spaces, in the midst of monachopsis.

crush

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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

cockroach

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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.