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.

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

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

IMG_2735-w

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

direct

Alien Invasion - Lucy & MiniB

Why do I love dogs? Many many reasons, too much to unpack, really. Maybe some day I’ll write a book. Well, actually, I’ve already touched on this in my PhD dissertation, haven’t I? But who reads these things anyway – longwinded dissertations, I mean?

One huge issue I have with the human world is the lack of direct, clear communication. Even with the most well intentioned. And far too much talk, talk and more talk. Words have a way of creating chaos in my brain. People spew words that are ambiguous, poorly constructed, and then become irate when their words are misunderstood.

Dogs are different. They don’t bother to mess around with bizarre vague social meanderings, no dancing between the lines, no illogical ‘protocols’, no furtive agendas that have to be kept hidden, no subterfuge – just blunt honesty.

In this photograph, Lucy and Mini-B are asking for chicken. Isn’t it obvious? Those faces, and the body language. They look like little alien creatures demanding to be given something – and that something in this case happens to be bits of boiled chicken. Chicken is their favourite, next to Loyalty Pet Treats Chewy Roo strips, of course. Now, that is the kind of social communication that does not stress or shred my nerves.

Sadly, reality bites – I am human after all, and I still need to gyrate together with the rest of confusing humanity and our human words, words, words, even when everything is more than merely slightly out of tune. If only our human social goings-on were just a little bit as beautiful as the music we have managed to produce.

making clemency

How does this Autistic Bunny deal with autistic burnout from too much to-ing and fro-ing in the Grand Autism Circus?

I cut, tear, rip, shake, turn, flip, shred and poke many many holes. Sounds violent? Actually the opposite. These are necessary actions in the process of making clemency.

Recycling and repurposing is an activity that has followed me since childhood – both my parents were creatives in their own fields, with fascinating hobbies. I owe a lot of my own artistic approaches to my parents.

This one took me a day. Its still amazing to me, even though I’ve been at it for five decades already, that an old pair of jeans, some old scraps of fabric, trimmings, buttons, yarn and silk flowers can give me so much comfort and joy. The best part of it all? I have Lucy by my side. I don’t want or need a circus. I have Clement Space and a Canine Angel.

savouring pulchritude

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Spending time with Lucy, just us both, nobody else, is both precious and renewing. What she gives me is more than I deserve, really. How can I not place her right up high on top, in my list of priorities? My life is so busy with this and that, but I am all she has. The inequality between Canine Angel and Mere Human is absurd. So much Beauty in the hands of a weak, confused, distracted and faltering human.

It was hot and steamy – not the kind of weather we like for walking – but we both love the Botanical Gardens. There is always something new to discover, yet so much that is comfortable and familiar.

No rain for awhile, and the grass was losing its deep green colour. There wasn’t any cooling breeze this time, I felt my body cutting through the thick moisture in the air, and I could literally sense the droplets cooking in the heat, my skin tingling with the subtle minuscule movements.

I was once told by a forestry expert that there were some really old tropical hard wood trees in the gardens. What I do know is that this place is very well cared for, the rangers, cleaners etc are very kind and friendly, and dogs are welcome here, though they must be on leash. It makes sense to have dogs on leash here, because there is vulnerable wildlife, and to keep the dogs safe from snakes. Yes, we have cobras here in Singapore.

We were too hot – I was drenched in perspiration and Lucy was panting heavily – and so we headed to the cafe for respite. I had a coffee, which I mixed with my iced milo in the bottle I brought with me. I settled Lucy on her mat with her water bowl and a huge length of Chewy Roo from our favourite Loyalty Pet Treats, which we order direct from Australia. The owners are wonderful folk, and we’ve become friends through the years. We’re lucky to have good friends, though I think it is Lucy who attracts the good people to us. I have her to thank for this.

The Princess was remarkably calm and collected, even when the chickens came to check her out! And there I was, feeling nervous about them chooks coming too close. Silly me.

We spent just over two hours at the gardens. It wasn’t a big day out, only a slice of the morning, but these little moments means so much to me, and I hope to Lucy too.

hope & hatred

Everyone wants to be a hero these days, it seems. Or maybe not just these days, but as long as humans have existed? With social media and the internet, things are of course speeded up and magnified, because the world can just burst through your computer or mobile phone or tablet screen right there into your living room (or wherever you may be at whichever moment).

Greta Thunberg is making news now – probably going to be a far more prominent autistic figure than Temple Grandin ever was. And she is attracting far more bullies, haters, jealous critics etc than Grandin did during her time-in-the-sun.

Why are so many people up in arms about Greta Thunberg? Here’s just one little article in a sea of articles trying to figure out this phenomenon: “Much Ado About Greta.”

I can understand and even expect the ableist haters, bullies and naysayers. It’s sort of a ‘regular’ thing in the autism world for us autistics who dare to speak out about anything at all to be spat on, chewed upon, derided and mocked with vigourous venom by loud non-autistics. (Or to be tokenised.) What I find intriguing and sad, are the autistic voices mumbling and grumbling along the sidelines. Continue reading

not alone

Not alone, never lonely – when I am with Lucy. I have never liked to ‘share’ my mental, emotional and physical space when I am deep inside my creating, building, making realm. Yet, sharing this sacred space with Lucy is so comfortable, seamless, and even joyful. And she has taught me how to (sometimes) tolerate other humans inside this interstice of clemency too.

I’ve been finding renewal and restoration for frayed nerves and burnout inside this space lately. Coincidentally, renewing and restoring some of my old clothes – accompanied by Lucy. The above photos show my latest execution: modified a pair of very old Roberto Cavalli jeans and transformed it into a long skirt. Lucy approves, methinks? ❤