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!

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

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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

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

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

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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)

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.

crush & crash

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I posted this a few minutes ago.

Where do we draw the line between being pushed beyond endurance and reasonable resilience when the Autistic person must navigate and survive in the normative dominated world system? How many ‘normal’ things does an autistic person have to force the Self to do at the expense of mental and physical health? Survival?

It is a question I have been asking for a long time now, on behalf of myself and other autistics who are labelled “high functioning” by the neuronormative world of autism observers, and thus expected to operate just like the neuronormative, or even better (because we are so ‘brilliant’, right?).

The more we are able to ‘perform’ in the Grand Autism Circus, the nearer we get to the “nirvana of neuronormativity” (a quote from my APAC19 plenary speech), the ‘higher’ we are labelled by the narcissistic systems of the normative majority. After all, if one does not ‘appear’ or ‘look’ autistic, it is must be a compliment, because identifying as autistic is the opposite of gaining approval. This attitude weighs heavily on every autistic person’s shoulders, though reactions may vary widely.

For some autistic people – like one self-styled autistic ‘leader’ that I know – the burden of normativity has become an achievement to aspire towards, and being or appearing ‘normal’ is to them a positive trait to attain. This same ‘autistic leader’ holds the view that autistic people should not receive any concessions or accommodations, that we ought to tough it out with everyone else to prove our mettle. Our disability (to function as neurotypical) is thus not respected as a disability according to the social model of disability but rather considered an intrinsic flaw to be eliminated under the medical model. Ask the said autistic ‘leader’ about those of us deemed “low functioning” and there is deep, dark silence. It is an awkward fraction of a second, before the person just blanks it out entirely. As if those of us with complex needs do not exist in their mind, or should not, for the sake of preserving their warped rhetoric. In fact, each time I speak ‘autistic’ frankness, each time I stand for and upon my moral ground on issues important to me, this person will churn out a well-rehearsed and deeply ingrained opinion: “this will not go down well” (with the XYZ of normativity)! A sad situation, really, and I don’t blame those autistics who cling to ableist frameworks forced upon them by the neurotypical powers that be. It is a grievous thing when one is continually looking over the shoulder, fearful of how things will “go down” here or there, sacrificing not only Selfhood, but also warping and bending ethical and moral constructs which contribute to and uphold personhood and identity.

Some autistics, as a consequence, hold on to the approval of the fickle-minded normative world, trying their best to negotiate with its unstable morality, just for the remuneration of a loftier ranking in ableist functioning labels. They are proud to claim superiority over those of us with complex needs, or who dare to show our natural autistic differences. I, however, abhor functioning labels. As an autistic person labelled “high functioning” by normative forces that be (well, I have a PhD and I topped my cohort, didn’t I? I can’t be all that severely autistic, right????), I am constantly flabbergasted, befuddled, perturbed and oppressed by these labels, because they bring with them stigma and often horrifying expectations blended with ignorance, which is sometimes blatant and conveniently deliberate. This is prevalent even among the community that call themselves disability advocates, who often fail to grasp and convey the kind of crystal clear communication that the autistic person needs (in order not to fly off the precipice in a state of panicked anxiety).

For example, I have been (or at least I am led to think) supposedly working with a few others on a project about disability, access and inclusion. However, nothing has happened for months – not that I know about anyway – and yet I hear snippets of this or that connected to this project. When I ask, I get vague responses that amount to no answer at all, and I am tossing and bobbing around with the flotsam and jetsam in a sea of ambiguity. What is happening? Am I in or out? And why this or that? Yes, to the neuronormative, rejection is embarrassing to convey, so they take forever and ever to inform the autistic person, and too often it is a case of never ever. What they fail to understand is that the state of suspension, not knowing, is a kind of purgatory, a cruel condemning punishment, to the autistic person waiting to find cadential resolution for any social transaction – and work with non-autistics is a social transaction, in fact, more time is spent on social interaction than on the actual work itself. Fine. I am not so ignorant as not to know that nobody likes rejection, but to my autistic mind, the few seconds of discomfort upon being rejected (for a job, in a relationship, in answer to a query etc, whatever the case may be) is by far better than the eternal or protracted torment of never being clearly informed. Clarity is resolution. To me, it is utterly heinous and rude not to provide this in any communication. Yet, to the normative world, the opposite is true.

There lies the distinct difficulty being autistic in a neuronormative dominated world – where our disability is invisible and has to do with a different paradigm of communication, sensing and responding to stimuli, rather than a visible physiological disability. Everyone now talks a great deal about access and inclusion, especially us disability advocates, yet, from my own experience in the field, working alongside other disabled people in the advocacy arena, there is very little in the way of access and inclusion accorded to me, to my being autistic. Mostly simply because I am so “high functioning” to them. Yes. I still feel the pressure to ‘perform’ social normativity – that is, to quote an old favourite phrase of mine, “performing the unnatural as naturally as possible” – in order to not cause friction, or be crucified. Many of us do such an exquisitely great job at this elaborate impersonation that we become burned out and overwhelmed, and then, when the meltdown point occurs, everyone reacts with shock and admonishment. It is as if the normative world is challenging us – in a jealous way perhaps? – and pushing us ever to the brink, and waiting to see us crash into the abyss, just so they can say, “There! I told you! Autistic people are incapable of social communication!”

I liken it (though it is a poor analogy) to making a wheelchair user crawl around while everyone else is merrily walking along, even advocating for disabled rights, never noticing that the wheelchair user actually needs a wheelchair, and then being aghast and surprised when the wheelchair user has had enough of scraping the floor and pleading for respectful accommodations, and thus suffers a mental and emotional breakdown as a result.

The “better” the “high functioning” autistic appears, the more the normative-minded world expects that ridiculously impossible feat of denying intrinsic autistic modalities while pandering to the magnificent exercise of taking on neuronormativity.

“OK, honey, we know you are autistic. Just keep it to yourself and don’t keep telling us about it, because we are unable and unwilling to grasp invisible concepts that rub against the fabric of our established ways of being. And heaven forbid, please, don’t have a meltdown in front of us, ok? You’re tough, you’re resilient, you have a PhD, you must stop acting like a spoilt brat demanding for this and that, least of all for actual honest conveyance of meaning (!!) and just get down to business as usual, like everyone else, like every normal human being. Nobody really needs to know truth, or clarity, or even details – it is just not a mature thing, nor is it a polite way to operate. OK?????”

This is why focusing solely on behaviour is rubbish at best and torture at worst. This is why hacking at outward mannerisms has driven and continues to push autistic people to ‘achieve’ the highest suicide rates among all sectors and sub-segments of humanity.

Mind you, I do have the good fortune of knowing people who have sincere and good intentions. I don’t directly blame them for not knowing how to interact with the autistic mind. But I want them all – yes, even the ‘good guys’ – to know that having to constantly, repeatedly, incessantly educate, elucidate, enunciate, illustrate and whatever else is terrifyingly exhausting. Gyrating stark naked and screaming the tiny little lungs out in front of the campfire of normativity is not exactly the autistic preferred way of being noticed or heard.

Is this an impasse, then? I honestly do not know. I speak for myself, of course, but I have said often that my autistic brain, my innate embodiment, just wants to withdraw from the normative world and go and live with dogs. Or animals. Or trees. Or anything that has nothing to do with human (mis)communication, expectation and demand to put forth an ostentatious, vigorous theatre show that they can applaud and praise you for.

Maybe I am “more autistic” than people realise?

How neuronormative are you? What flavour? A mild curry or taste bud exploding spicy?

Only Lucy knows the answer. And she is not telling me. Or perhaps the tables are turned, and I am the one not able to grasp her unworded wisdom?

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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.

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? ❤