dedication

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This blog is dedicated to:

My canine angel, Lucy Like-a-Charm.

My baby sister Althea, her wonderful hubby Robin, and her two furry boys Bizcuit & Tiny, and now also Mini-B, the prettiest sweetest little girl.

My loyal friends YS and Rick.

Without you, there would be no adventure, no narrative, no amazing tales to tell.

Autistic Bodies

Clement Space 2020 - detail, work-in-progress

Well, methinks I’ve created a new hashtag: #AutisticBodies

I wonder why this wasn’t already there.

Autistic bodies behaving differently from the normative is something most autistic people have already known and tried to explain to various people and collectives of professionals, whether autism-focused or just practitioners in healthcare, mental health etc. If our brains are wired differently, then why is it not yet common knowledge that our bodies respond differently too? The neurological functionality is inextricably connected with the physiological – how my brain works does impact how my body works. Not rocket science, is it, especially in this day and age.

I haven’t been babbling and waffling around here in Bunnyhopscotch for some time. I’ve been rushing around the UK on a whirlwind exploration (for work, not on holiday) and then fell ill three days after I returned home. There I was, feeling pleased as punch that I did not have any jet lag and almost smug about not being hit by a serious flare up associated with any of my autoimmune conditions.

Then three days ago, Lucy did something she hadn’t done in a long time. She suddenly got up from her day bed near me in the living where I was hard at work, went into our bedroom, and began to bark at me. Then she came out, paced, and returned to the room. When I finally extricated myself from my work and went to look at her, she was lying on my bed, head up, eyes alert and looking straight at me. I knew she was telling me to go to bed. She was providing a sensory warning, like she used to do in our good old days in Sydney, Australia. I squeezed into my bed next to her and fell asleep in a spooning position. This is another unusual thing. Lucy doesn’t normally like touching when we are sleeping, but only when I am really unwell, she allows it, and even initiates it. We both snoozed for three full hours. Very badly needed.

However, the day, I returned to working all day, and pushed my body over its limits in typical intensely focused Autie manner. And of course, on the third morning, the ominous gong struck, that all-too-familiar-but-not-welcome tritone of foreboding that has a warped, bendy fizz to its lower registers while the higher dance around with metal-tipped ballet shoes on a tight hard surface. My body was issuing a stern warning: a nasty infection has creep up upon me and I need to address it NOW, before it goes into full bloom, full blown incapacitating horror.

Yep, a simple common cold and cough, if left to fester and “recover naturally” from, usually mutates into months long hacking, coughing, bronchial asthmatic conniptions of quite desperately catastrophic proportions. The last time this happened, I completely lost my voice. While losing my voice altogether is pretty extreme, the more ordinary progression leads to prolonged agony for myself and others around me having to witness the grand debacle.

Well, I have a big exhibition coming up in January, a brand new iteration of ‘Clement Space’, commissioned by the National Gallery, Singapore.

And I am also performing in a multi-artform show, also at the National Gallery in January. It will be Singapore’s first professional performance by an all-disabled cast, directed by Peter Sau, the only director in Singapore I trust enough (quality of work + integrity + respectful dedication to artists with disabilities) to work with at present.

This is why I cannot afford the luxury of being sick in typical Bunny manner, especially since the Bunny style comes with all its theatrical extremes.

Trying to quell the panic, I attempted first to coax my body away from the precipice via the oft-touted ‘natural’ way – Vitamin C + D + Zinc – though I seriously cannot understand how inundating the body with copious amounts of this stuff can be considered at all ‘natural’. Anyway, having lived in my body with acute sensory awareness for more than half a century, I know it reasonably well. Twenty-four hours is all I need to know that this stubborn blob of flesh, blood and whatnot else was showing no signs of budging from its determined course into the abyss. So, yesterday morning, I launched myself halfway across the country (it’s a very small one, but we are just overly dramatic about distances here) into the busy clinic of my new regular doctor. Why travel 30 minutes or more just to see a doctor, one may ask, in a tiny city like Singapore literally teeming with GP clinics? Simple. This doctor respects my autistic embodiment, listens to me attentively and works with me for the best possible solutions to my physical issues while also considering mental wellbeing and my unique situation regarding work, maintaining a balance between my Autistic Joy and being able to function at all.

In a nutshell, I told my doctor to whack me with the strongest stuff he could safely administer. I went home armed with a bagful of pills and a bottle of vile smelling dark coloured liquid, and almost enthusiastically plunged into the bag like it was some goodie bag from a wild party. Voila! Yes, really, I did feel almost instantly better!

But guess what? The medications that the doctor said would help me to sleep – i.e. inducing drowsy woozy states – kept me up all night instead. It is almost eerie, because I am all bouncy and full of beans, and I didn’t even drink a drop of coffee all day yesterday. Needless to say Lucy was not at all pleased with me.

Autistic Bodies Behaving Strangely.

We should get together – us Auties and our friendly supportive GPs and healthcare providers – to conduct a study, write a book about how autistic bodies present, respond and behave differently to different common healthcare approaches and medications, and we shall all become fabulously famous for it. OK, maybe not the fabulously famous part, but in all seriousness, more much research should be done in this area. It is important. Isn’t it? The health of our bodies are just as crucial to our ability to cope and thrive as are other aspects that are already churning and heaving in the sea of autism-interrogation like socialising etc, yes? Maybe even far more, simply because a well person is a happier person and able to function more optimally according to the individual’s paradigm. Isn’t this reason enough?

Righto, enough of flubbing around here. Time to get back to work. Tally ho, Bunny and Lucy!

defenceless

Lucy

Lucy Like-a-Charm by Dawn-joy Leong

It isn’t our petty human judgements that matter, really. All the to-ing and fro-ing around what is or isn’t ‘vanity’, ‘comfort’, or self-glorification, accusations of misconduct and counter declarations of innocence, and the swirling, heaving, churning of pathetic human reasoning are but worthless distractions, grandiloquent farce.

You want a pet? You want an Assistance Dog? Go for it! So what if your reasons are mired in narcissism or personal comfort? Why not? Let’s be brutally honest, shall we? We all want to be loved.

Let’s forget all the human-centric bitching and snitching, snivelling and grinding, grovelling and shoving. Quit the ridiculous conniptions, shall we?

Here is the bottom line.

To anyone disabled or non-disabled who wants to bring an animal into their lives, whether pet or assistance animal, or whatever else you wish to call it: no matter what your reasons, noble or ignoble, just make very sure you will not neglect, misuse and abuse body, mind and soul this voiceless sentient innocence.

Meanwhile… there goes yet another innocent life, sacrificed on the Altar of Human Hubris, surrounded by pious choir, replete with tiny little violins playing pitiful tunes tugging at the heart strings of our human guilt.

My heart breaks.

torment

Unable to sleep. Haunted by images I should not have looked at on social media, of humans taunting and laughing, mocking the suffering of the very animals they are supposed to be caring for. I am thrown into an ominous swirl by conversations (or should I say slugging matches) between two divided camps, all of which I ought never to have read. I can sense my blood vessels dilating, pounding, and my empathic resonance with the poor animals caught in the midst of the twisted farce is causing an aching pain in my abdomen. I am literally sick to the core.

I do not have the energy to enter into the kind of energetic ‘debate’ that is now raging: people defending and condemning humans being humans in an age where the world is encapsulated and dissected inside a glowing screen.

Humans are humans. This is what humans do. They squabble, they gobble, they screech and they bleat in chaotic cacophony. And when humans behave badly – regardless of explanation and excuse – it is always the voiceless animals who suffer the most.

I know. (Because I am human too, although many in the normative world do not consider Autistics human enough – but that is a different topic altogether.) I still, to this day, berate myself for all that happened to my beloved Lucy in that horrible nightmare where she lost part of her beautiful tail. It all happened within a matter of hours – I left her in the care of someone I thought I could trust – and I found out how foolish I was in the hardest way possible. Lucy paid the price of my indiscretion. You see, the animals that come near us, those beautiful innocent creatures who inhabit our sphere, always pay the highest price that way.

Humans tell me nice things, that I am not to blame etc etc blah blah blahditty blah, to the point where I am afraid or embarrassed to give voice to my utter devastation and lingering trauma. Us humans are like that. We stir things up, we fight, we sling mud, we wallow, we gyrate around our own flickering campfires. Everything is about us. Our consciousness is all we really care about. Meanwhile, sentient beings around us – some we claim to love, and others we are oblivious to – are put through excruciating torture by the systems we have created, the mess we’ve made (and we really have no idea how to unravel it all). We are appallingly incognisant of our own callous human insensitivity to the Beings who do not or cannot enunciate according to our worded deliration, you know, that thing we call “language”.

Lucy sleeps next to me. I am listening to her breathing, the rhythm, pattern, tonality and harmonics – my mind is struggling to keep up, I want to remember it all, as vividly as possible, while my heart feels as if it is disintegrating, imploding, melting.

While humans rage against humans, and humans make excuses for one another and themselves, the silent ones are roaring in the universe. I cannot even begin to transcribe what I hear. It is too  painful, too horrifying, to put into limited human vocabulary. We humans just do not have enough language for suffering.

And the to-ing and fro-ing continues… I really shouldn’t look at or read any more of this rot. My soul is writhing in the mire of my humanity, and Lucy has just woken from her sleep, she looks at me with such luscious, rich meaning in her gaze, my heart wants to burst because it is unable to contain this wondrous honour she has bestowed upon me.

If there is one miserable, paltry human lesson to learn from this particular cruel and bizarre circus, it is this: never ever let your animal out of your sight when you bring them to the veterinarian for any procedure whatsoever. The only one time I did this was when I left Lucy with that person, and as the tragedy unfolded, my soul was almost sucked out of me as a consequence. If your vet doesn’t allow you to watch over every little procedure, go to another one who will. All arguments thereafter are mere puffs of smoke, vapid and feeble.

IMG_3668-lucy@vet

autistic opinion

Sunday morning. Not much sleep. Too many reasons to list. I am grateful always for Lucy by my side. Difficulty with sleeping is another one of the many struggles that most autistic people face. Again, it’s probably less to do with Autism per se, and more about the state of high anxiety that we seem to be perpetually in. Hyper vigilance inextricably blended with acquired trauma (just staying alive can be a traumatic journey for many an autistic person) would be my own guess.

I am listening to Joan Baez today, because of an ear worm that began to wriggle in my headspace as I got out of bed today. This song. So beautifully sung by Joan Baez. “The Water is Wide”. Continue reading

autism beware

IMG_2712-lucy-zz-insta

When I grow too old to dream, I’ll have you to remember.

I’ve been musing on a strange (to me) phenomenon lately. It wasn’t so long ago (well, maybe some twenty years or more?) when I remember I used to be acutely aware of time, space and situation, so much so that my directional radar was sought after by family and friends. Road navigation, finding cars in a massive and crowded car park, locating shops, remembering where we had meandered from, through and telling people where to go.

Then, unbeknownst to me, I slowly morphed into a creature with no sense of direction, no idea where my body in space is positioned, needing to touch the handrails while stumbling and wobbling up and down stairs (the creaking comes from arthritic knees), unable to figure out where we’d parked the car, and going round in circles with absolutely no memory of having hurtled through time and space. Continue reading

connected

There’s a lot of talk swirling and churning around the idea of “isolation” lately on social media. Everyone seems to be weighing in about how harmful it is, and for many, isolation is indeed terrible. Everyone needs connection in some way or other.

Autism was so named because of what non-autistic observers deemed as unhealthy or unnatural self isolation.

Autism ‘expert’, Bryna Siegel, once said of autistics:

“It is as if they are missing a core aspect of what it is to be human”…

“Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to but when they want to.”

BrynaSiegel Quote

Continue reading

spiky spots

I have just spent two full days in a hothouse setting trying to learn a skill that I feel quite hopelessly incapable of mastering because some key elements require a high level of social agility which my autistic embodiment just cannot muster, try as I might. Sitting in my chair and trying to look engaged with the subject matter while weaving in and out of lucidity was about all I could achieve. My brain felt broken while my body was hollering unhappy slogans. It’s the kind of scenario where people who don’t know me well would look at me, incredulous, and say, “But you have a PhD, how can you not understand such simple concepts?” Um… well… You see, it’s not the concepts that I don’t grasp, it’s the ‘knowing-feeling’ that I cannot execute or bring to life these fundamentals that cause my brain to short-circuit, and thus my Being rejects the entirety while in the process of imploding. Continue reading

dogs and disability advocacy

TEDx 2018

… with Lucy at TEDx 2018, Enabling Village.

It was good to read this article today in Mothership by my friend Cassandra Chiu about her experiences as the first female guide dog handler in Singapore, and the first (and still the only really effective) guide dog advocate in Singapore who has managed to herald in a new chapter of awareness, acceptance (albeit tentative) and even legislation for public access.

Yet, I still remember the huge fiasco at Ngee Ann City which attracted so much nasty criticism against Cassandra. I was in Sydney at the time, closely following Cassandra and Esme on their social media. I read with disgust the sick and heartless comments made against Cassandra, some grossly indecent and personal, and others just parochial, low-level jibes all too common among the average stubbornly uninformed Singaporean keyboard warriors that populate social media spaces. Even radio deejays got in on the act, calling her an “a**hole” on air. Yes, the radio station was fined but not for disability discrimination, mind you, the penalty was merely for using a censored word. Oh, and various online news articles seemed to delight in the “b*tch” word, probably because the half-baked ‘journalists’ just did not have the vocabulary to do better than that.

Continue reading

gaseous emissions

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The yellow stuff in the photo above is durian. A tropical fruit that is either loved or hated for its pungent smell and strong after-taste. I love durian, though I am sensitive to olfactory stimuli, that is one kind of gas that I am strangely attracted to (but only if I am eating the fruit, and not after the leftovers are discarded in the trash heap.)

To be brutally honest, most of what constitutes interaction with humans is to me gaseous emissions – some pleasant, like that of the durian, but mostly fatuous and then some ominously foul.

(I apologise for the awkward sentence construction, though I guess being in a state of high Anxiety, near meltdown and whatnot else is not really an excuse for poor writing, or is it? I don’t really know. There’s too much gas around me.)

This morning, while engaging in some “reading-stimming” (where I read, read, read all kinds of articles online to try and relieve the intense pressure that is building in mind and body due to some trigger or other) I stumbled upon and re-read this blog post by Riah Person, “Gaslighting: what it is and what it does to you.”

It is a simple, straightforward, non-academic piece, expressing thoughts about a crucially important subject. Continue reading

communication as access & inclusion

PomPoms.png

clear communication is access & inclusion

Clear and direct information is the autistic person’s access to the human world. Neuronormative communication is confusing and extremely anxiety inducing. Questions go unanswered, conversations are left suspended in mid-air, semantic meaning is vague and the autistic is supposed to be the one with the communication impairment?

Communication is respect. Clear communication is like a well-built ramp for a wheelchair user to access spaces that are otherwise inaccessible. Without clear and timely communication, the autistic person is made to crawl around the floor with no idea where the entrances and exits are, crawl up the stairs and still not have any confirmation of exact location.

Communication is access and inclusion too, in case people forget. What is important is not always visible or physical. People who work in disability focused fields need to remember this. It’s not always about wheelchairs.

(Photo: assorted multicoloured wool pompoms)