clarity

I’ve been asked to write a short chapter for some commemorative book, on the topic of clarity. Seeing clearly. Something along those lines. It’s turning out to be the hardest 1,000 word essay in my recent history of writing anything. What’s the grand fuss about? I love the topic of clarity, so why am I humming and hawing, to-ing and fro-ing, procrastinating, starting and faltering, and just flummoxing around? I’ve even tried to wriggle out of it – after all, this isn’t a paid job, and I’m sure as hell or gummy-bears not doing it for the ‘fame’ (infamy is more like it, at the rate I’m going) – but the editors were persuasive, and so here I am, at the end of the six-month-extended deadline, blogging about it instead of writing it.

Well, it is a sticky treacly tricky word, “clarity” is, and the specific topic mentioned in the brief is mired in lumpy boggy viscosity. It would not bode well for any author – let alone an Autistic Bunny already well-known for an unwelcome abundance of blunt honesty – to take the brief too seriously, that is, to the letter. My brain is crumpled, like a lump of deep-fried soft-shell crab left out in the rain, just trying to approach the subject.

I have a dark, ominous feeling that my signature crispy, limpid pellucidity would not do well in a collection such as this one. I don’t want to waste my time and effort, but it’s just not a possible feat for me to achieve the proliferate commonplace simpering obsequious sycophantic juggling act either.

Truth be told, the skies have been slowly clearing and opening up for me in recent years, and being able to see everything clearly is indeed a necessary and powerful thing.

However, I think the kind of “seeing clearly” the editors want is the Johnny Nash feel-good stuff…

 

While I am veering towards this other kind of “clarity”…

 

On a clear day, you can see forever…

Wish me luck!

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

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)

Autism Recovery 2

 

Breakfast is an essential ritual for me. I am either inspired by my breakfast – however ‘weird’ it may be – or if things don’t go ‘right’, the wrong breakfast food and setting can trigger a cascade of unfortunate anxieties for the day. As concrete as the morsels I imbibe, the little bits and bobs of thoughts in my mind are like palpable entities floating about, fluttering, sighing, rising and falling, touching and separating, with the breezes that blow in and out of my thought-space. 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.

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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renascence

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It arrived yesterday morning. The largest piece of furniture I now own. I have a piano!

The last time I had a piano was ten years ago. I didn’t miss it at first, I am not a good pianist anyway, but as the years unfolded, my longing for a piano grew, especially during periods of specific complexity, and something from within the churning and heaving kept reaching out for the kind of centred-ness that I always found in the physicality of playing the piano. There is something about the whole-body engagement, the demand for nuanced precision, the measured emotionality, the sensorial embrace of sonic comfort, and losing yet finding Self inside this colossal entity called ‘music’.

This piano is a gift from mum. Actually, it was mum who kept prodding and pushing and nagging at me to get a piano. Mum had been listening to many of her old CDs lately. Nothing ‘high art’ about her taste, some who pride themselves as aficionados would call it pedestrian, but I have been listening along with her as I work at my various written tasks in the living room. Occasionally, I would offer snippets of trivia, bits of historical information, about the pieces of music emanating from her little portable player by her side on her chaise lounge. It was mid-way through Tchaikovsky’s Piano Concerto no.1 when mum suddenly declared in a loud, assertive voice:

When are you getting a piano so you can play for me?

I was surprised. Mum is claustrophobic, she hates clutter in the home, and ours is now a rather compact one. In fact, she has been grumbling endlessly about how much she misses our old family home, the rambling garden with the many tropical fruit trees, orchids and lots of grass for the dogs to play and run around on. Where would I put a piano in our current apartment? I reasoned with mum. But she was undeterred.

After a few weeks, I relented. I wanted a piano too. I’d been wanting one for a few years now, and the desire has been growing like a slow crescendo.

So, here it is. The tuner came immediately after, and did a basic tuning. It hasn’t been played for many years, the former owner told me, and now the strings are stiff and unwieldy. I’ll have to request for another tuning soon, there are some keys that sound wobbly. But I am loving it anyway, my perfect pitch doesn’t seem too perturbed by the awkwardly shaky tonality. It’ll probably begin to bother me later, when the novelty of finally having a piano in my home again wears off. I’ll leave it till then to address. One day at a time, Bunny.

And Lucy? What does she make of it? Well, she remained unmoved from her lounge bed, taking it all within her elegant stoic Greyhound stride, until today when I played and sang a song that she knows well, because it was one of the lullabies I sang to her every night when we lived in Sydney: Gershwin’s “They can’t take that away”. Lucy got up, came to the piano, sniffed the air, and then placed her head on my lap. OK, I’d like to think she recognised the song and liked my playing and singing, but it could’ve also been her signalling me to shut up because she disapproved of my terrible playing?

Dogliness prevails nevertheless. For now. Mum is happy too. Tomorrow, I shall begin reviving my favourite J.S.Bach preludes and fugues.

deliciate

Deliciate: to delight oneself; to indulge (in feasting or other revels)

Old words fascinate me. And this one is a timely balm to a fractured, frayed and frazzled soul. (Yes, I also love alliteration. Part of my sensory ‘stimming’ – calming, even if just for the rhythmic enunciative physical qualities.)

This is one old word that I’m longing to luxuriate in.

Sometimes, the cosmos interferes vigorously, even sharply, for my own good, especially when I have been self-destructively obtuse, obstinate and obscurant – inwardly – denying what ought to be glaringly obvious, covering my ears to the roaring whispers of ratiocination. A knock on the head was needed to wake me from my self-induced somnambulism. This thunder-clap on my thick skull came from a remark made by an autistic man, expressing an utterly selfish viewpoint with foot-stomping petulance and digging in of the heels with so much defensiveness that it was almost bizarre. The age-old “What’s in it for me?” agenda reared its ugly head. I was shocked and disappointed at first, but I realise now that, inside a deeper consciousness, I already and always knew this side of him. I had merely been blinded by my very own enthusiastic hope that the person would change, daring to even think that I could make a difference in this person’s attitude and learning journey within such a short span of time as three years. Continue reading

imperilment

Autism Grand Circus

An autistic friend recently supplied me with this link, a tongue-in-cheek “New Age Bullshit Generator“, which generates a slew of pseudoscientific propositions for any kind of purpose you wish to apply it to. We were discussing the topic of snake-oil and pseudoscience, and its prevalence in what I call The Grand Autism Circus.

On the one hand, the New Age Bullshit Generator is an exercise of ironic humour (and very clever programming), but one should not ignore the presence of a grave, sombre message that lies beneath. Pseudoscience permeates the autism world, which is a fierce and aggressive circus that does not exist in the realm of any other disability in today’s context. Continue reading