sensory expedition

 

Lucy seemed restless this morning. She was lying in bed, watching me work at my desk, and suddenly did a little bounce and let out a mini yelp in my direction. I turned to look at her and she held my gaze, nodding her head, bounced again and made that same yelping sound. Lucy does that when she wants to communicate – she doesn’t bark at all in any other ‘normal doggy’ circumstances. When I first heard her bark, it was two months after she came to live with me, and out of the blue, one afternoon, she did that bounce + yelp thing, asking me to play with her. I’ve learned to recognise that. Continue reading

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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.

Talents

Truth. Multidimensional abilities. But… because… unable to fit into the Grand Neurotypical Circus Libretto…

...autisticook

There are so many things I can do, and do well at that.

A picture of freehand nail art, done on my own nails using nail polishes, showing a drawing of a small gnome with a bright red hat, surrounded by berries and flowers, on a green to brown gradient background

I’ve gotten a lot of compliments on my nail art, for starters, and a lot of people have suggested I could do this professionally. I don’t think I’m at the level yet that I’ve seen from professional nail techs, but it’s a special interest and I’d probably get there within a year.

I’m a good cook. Not at restaurant level (mostly because my presentation sucks), but if someone asked me to cater an event for 30 people, I’d nail that. I’m really good with taste and texture and what foods work well together. And I rock beer pairings.

I’m a damn good writer. Mostly blog posts, sometimes essays. Even release notes and user manuals. I’m detailed and structured and I have an awesome command of language. I know how to grab someone’s attention.

I’m a good carpenter…

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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

Rendang (Be)Aware!

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Crispy Chicken is KFC, no Rendang!

There’s a big storm in a cooking pot these days, huge outcry over the ignorant judging of a Malaysian dish by a non-Malaysian. So, what’s in a rendang? Plenty. Especially when judged by some self-styled ‘expert’ on a cooking show who has no idea at all what rendang is. Thus, all hell breaks loose. And rightfully so. We are guarding our cultural heritage after all.

Here’s the British High Commissioner in Malaysia weighing in on the matter, defending the delicious not-supposed-to-be-crispy dish.

However, why is it that Autism is being bandied about by non-autistic self-styled ‘experts’ without authentic Actually Autistic voices writing the libretto, and that is deemed ok?

Does this mean that Rendang Awareness is more genuine than Autism Awareness / AutismAcceptance? 

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.

crucial assistance

 

 

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Lucy came with me to the Arts & Disability International Conference today. It was a huge blessing to have her with me, well worth the small ‘inconveniences’, like having to take her outside for potty each time we had a break and thus missing out on food and beverage.

When we first arrived, I made the mistake of choosing to sit in a busy area where people were walking or wheeling back and forth, standing around chatting, and even striding over Lucy, who was laying on her mat next to me at my feet. The lights in the rooms were confronting, to say the least. Lucy took it all in with grace and quietude, and she kept a discreet whisker out for me all the time. I began to feel nervous and agitated from the constant noise, movement and frenetic energy buzzing round and round, and Lucy got up to indicate that we should move to a less busy spot. She led me to the far corner on the other side of the room, and we settled down comfortably there, until lunchtime. Continue reading