appurtenances

I used to be Geek Gal. Now, I am just a middle-aged Autistic Bunny trundling into “Aunty-Hood”. But I still thrill to the touch, smell, look and whirring, clicking sounds of those little things called “tools”.

Here it is, my wonderful supportive friend, Minh, sent me this beauty, all the way from the USA. He refers to it as my new “tool”. And so it is indeed, how I love the various little things that help me do what I love to do. My autistic elemental connectivity creates channels with animate and inanimate that bind, blend and fuse in intricate ways with my Being. My “tools” become parts of me, inextricably bound, once there is an affinity established. This baby came nicely packed, with a bunch of accessories, including a Peak Design strap and a set of meticulously detailed instructions – such a help to me, because I am an ignoramus in this area. My friend has created a simple set up from which I can launch my own learning. I notice that he notices details and I cannot say how much I appreciate someone who understand my mind, and whose mind runs along similar trajectories.

And, because I love the process and unfolding of sequences through time and space, lining up toys and putting things into multidimensional categories, here is a tiny documentation of the unboxing of what my friend calls my new “tool”. It was much more richly faceted an experience than the dull photographs convey, but you’ll ‘get’ it if you do, and if you don’t, it’s ok, skip… skip… skip… over to the last bit.

I am now undergoing some online ‘training’ on how to use this “tool” better. I’ve procrastinated on this for too long, since my 2015 series of Lucy in Sonorous Repose, embedded in Sonata in Z, all shot using a Canon G11, which was also a gift from Minh. It was sadly chewed up by the late Misty Greyhound, and although I had it repaired, it never was quite the same again. I’ve started the uphill climb already, experimenting with Lucy and the other two furries, Mini-B and Tiny. Not too happy yet, it’s power-packed with myriad features that will require some concerted effort to learn, but it’s a challenge that I am relishing. I shall keep soldiering on!

Talking about tools, I did get myself a few other peripherals too, just not in quite the same league as this gem. Like this humble Zoom H1N, the cheapest simplest in the Zoom range. It does its job, and with that tiny weeny grant, it will do fine.

So, here we are, all set for a new presentation of Scheherazade’s Sea 2010 – version 2020, the tenth anniversary, fully digitalised, updated iteration!

voicing the silent roaring

I’ve been doing a sort of big-ish battle with my autoimmune condition in the past three days. The complete works in quite a bit of horrific glory – if you have any kind of vasculitis you’d know what I’m talking about, but if you don’t never mind. This post is not about my wonderful physical pain. Ironically, it’s about my ‘voice’ – in a multidimensional way – just as I am riddled with so many aphthous ulcers that I am running a fever and unable to eat or speak, let alone sing.

I posted up this song of mine today on my Facebook. About my journey to Beingness. Of all my songs recorded during that period (1999-2000), this one always brings me to tears, and the narrative grows and grows every single day. I want it only to end when I am no more on earth. Being Me is a lifelong process. And the reason I am in tears each time is because I am overwhelmed with gratitude towards all those – in an almost mystical and magical serendipitous way – who have contributed to my Becoming. Continue reading

limitations – yours or mine?

A friend of mine posted this video on her Facebook, and I’ve reposted it on a few of my pages. My friend, a Professor in an Australian university, has worked extensively with people with intellectual disability, and she is currently my personal mentor for an inclusive research project I am undertaking together with a talented artist with Down Syndrome. In fact, it was my friend who opened my mind and heart to the wonderful realm of inclusive research, that serendipitous day, in my first month in UNSW Sydney, when I walked into her workshop on the topic. I was literally in awe, and this experience contributed significantly to the course that I would take along my professional and personal journey henceforth.

The video my friend posted expresses my own thoughts and experiences very succinctly.

We, the disabled, are constantly under-estimated, stigmatised and marginalised by society, and that includes so many supposed ‘experts’ in the wide field of disability support. Narrowing it down to neurodivergence, I am finding it increasingly uncomfortable speaking vehemently about ‘inclusion’ and ‘equity’, even when I am among fellow disabled persons, because one segment of our ‘disabled community’ is consistently missing: people with intellectual disability. Where are their voices? Do they not also have the same rights as all other disabled people who are rising up and advocating for fair access and inclusion? Continue reading

COVID19: detox

detox

detox

Well, I did say I am loving the stay home measures and I cannot get enough of solitude and semi-isolation (I live with mum, the helper and the floofs). I meant it to the last tiny iota. Lucy is loving me being home too. So this isn’t a grumble about being bored with nothing to do at home – in fact, I actually do not relate to the word “boredom” at all. There’s always something exciting to do on my own (or with Lucy), though I’m spending most of my time nowadays working and I wish there were more hours in the day for making art, playing piano, writing music etc. (Sigh. I mustn’t complain, some work is better than none, especially since 70% of all work for the year has been cancelled.)

Detox. During this stay-home period, I have decided to give myself some positive attention and self-care, and do some things that I have neglected to do, for my own wellbeing. One of the things is, I am detoxing from the anxiety-laden activity of phone calls. Yes. You read this right. Most Autistic people actually really abhor voice calls, you know, the kind where you jump in fright and your heart begins to pound excessively hard when the phone suddenly rings? Yes. That. Oh wait, you’re not autistic and you don’t have sensory processing difficulties? OK. Then perhaps you’re one of those who do like phone calls? It’s ok to like what you like, but I don’t like it and I am trying to convey this to my friends who do like phone calls. Continue reading

COVID19: pattern recognition

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Screenshot from CNA’s tracking site

The above image is a screenshot taken from the CNA COVID19 tracking site.

Autistic people are said to be good at pattern recognition. Well, it is certainly accurate about most of us. Sometimes, this trait is almost instinctive, not a conscious act. That is true in my case. Perhaps because of negative pre-conditioning, I freeze when deliberately told to pick out patterns, but when I am at ease and just naturally reading or observing or absorbing the world around me or inside of me, patterns emerge that press against my consciousness. Many of these observations, I tend to push aside in favour of learned ‘neuronormativity’ – because my autistic traits have been labeled miscreant or absurd or even paranoid – but when ‘fiction’ later unpacks into fact, I realise that I had been right all along. This applies to my autistic instinctive sensing of people. I’ve failed myself too many times to recount. Now, I am spending the rest of my short life (autistics have shorter life expectancy, did you know that?) trying to undo the damage that the normative world has placed on my highly tuned senses and proclivity for pattern recognition. Some of it is really rudimentary, nothing genius about it at all, yet I’ve be conditioned by the normative to treat it all with disdain.

I became very concerned the moment news broke out about the current new coronavirus, SARS-CoV-2, in January this year. Something in my brain immediately associated this with the 2003 SARs and the memory of how it went haywire. Now, I am not a professional in disease control or epidemiology, I am just a lay person who was brought up by medical professionals, so some rudimentary awareness was inculcated since childhood. That is all. To me, it’s merely garden-variety level of understanding. In my mindscape, I saw it visually, the escalation, the frightening ignorance of the public, I knew how it would go, but I said nothing, after all, who’d listen to an autistic artist with an awkward reputation, anyway?

This video released on 27 January remains embedded in my mind. Yes, I’ve cited it countless times. That is because what this HKU professor said aligned perfectly with my anxiety at the time. I felt a desperate sense of urgency, but it was impossible to convey. And now, everything has gone pear-shaped around the world. Nobody listened anyway, and his was a professional voice, so who’d have listened to mine even if I had the courage to speak?

Now, the feeling of anxious urgency has become that of resigned despair, because of the patterns I’m observing in human behaviour.

Well, here is a different pattern I am aware of: I am lucky to be in Singapore, and I deeply appreciate the way our government is protecting us. I most definitely do not wish to be anywhere else at this point in time. But I am wondering why western media and the WHO are lavishing so much praise on Singapore, and Hong Kong is completely ignored, as if they do not even exist? Hong Kong has a more dense population and fewer resources than Singapore, yet they are doing so well, comparable to my country, in fact, despite the added difficulties.

“Curiouser and curiouser!” cried Alice… The background music playing in my mind is not a pretty one, it is a sad, mournful three part dissonant contrapuntal piece for un-tuned violin, metal plate, and vocalisation…

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

five-four

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Today was yet another brain melt day, I have been having a great deal of these lately – triggered no doubt by the combined crush of lack of intellectual and creative stimulation, too much stress from trying too hard at everything apart from engaging in real creative work (which includes research, not just art, which I love), overload of weariness from advocacy (often this means preaching to the un-convertible), and the ironic lack of empathic understanding from even the most well-meaning non-autistic ‘autism experts’, who, despite their book knowledge and claims of having worked with autistic people for x number of years, still have little to no idea how to actually communicate with Autistic people according to our intrinsic styles. It is always us Autistics who have to bend, bow, wriggle, wrangle and perform grand calisthenics in order to reach out to the normative. It’s no walk in the park, trying to make ourselves understood – ironically, the ‘autism experts’ seem sometimes the least capable of comprehending us (not always, I am glad for the wonderful allies I have met and with whom I work). Blame it on the rigid (oops, aren’t we Auties the ones who are supposed to be inflexible?) stubborn adherence to the Medical Model, perhaps?

Anyway… Mental exhaustion, emotional depletion, and sensory-physical devastation can have crushing effects on a hyper sensory Autistic Bunny. Too debilitated to even cook for myself and too out of linguistic spoons to instruct our helper to cook for me, I decided to order in my lunch via FoodPanda delivery. As with almost all Asian (especially Chinese) food, it tasted better than it looked. (With the exception of Japanese cuisine, which looks every bit as delicious as it tastes!)

Then, while going through some work-related emails (as the food gurgled it mushy way down my digestive tract), I was reminded to look again at Damian Milton’s video on “Double Empathy”.

I love Damian’s work, he has done a great deal of work in the area of empathy, and I also like his dry, deadpan humour. I won’t add further to this excellent talk, but just to insert in here that somehow, my brain zipped and zapped a connection with this other thing, seemingly unrelated but yet it is, because Damian did mention music as a communication… Here we are…

Why “Take Five” by Dave Brubeck? I seriously do not have a ready explanation, although I am sure there is one if I dug deep enough. For now, my brain isn’t working in the conventional way, so I’ll just say that’s just the way my brain works. Seemingly bizarre connectivities. But sometimes exquisite!

No prizes for guessing what rhythmic time signature my brain worm is gyrating to now.

(un)broken

broken pieces

This morning, my precious Octopus mug handle was broken by the cleaning lady. It was a gift from a dear friend, bought from a little shop in Covent Garden in London, and it’s traveled with me across many cities and different continents through its 30+ years of existence in my care. Intact. Today, I felt a part of me had fragmented together with the demise of this innocuous object. I can hear the neuronormative puffing and huffing, “Come on, it’s just a mug handle, get over it!”

Well, I am Autistic. I used to become intensely disturbed and distressed when someone so much as moved my pencils in my pencil holder. Neuronormative ‘expert’ observers of Autism label this “meaningless” or “obsessive” adherence to order, because we autistics are supposed to be craving some kind of malevolent “control” over our out-of-control environment.

The “out-of-control” part is accurate, but the “control” part is rubbish. What the normative ‘experts’ – professionals making good money out of us in the autism domain, and normative-minded parents spending a lot of money on non-autistic devised autism ‘interventions’ – do not know, and/or are not ready yet to want to know despite us autistics telling and telling them (though this is changing slowly) is that many hyper sensory Autistics like myself inhabit a realm that is far more exquisite than the noisome pestilence-filled domain called “normality”. We are connected to the vibrant matter around us in ways that normative minds may never be able to grasp, even some Autistics who’ve been so successfully brainwashed and ‘corrected’ by various behavioural mental programmes into becoming pseudo normatives, because they have sadly lost touch with this beautiful part of their embodied existence.

You see, this “just a mug handle” is part of the finely balanced, natural elemental ecology that I call my intimate abode. It’s not that kind of bizarre Svengali-like “control” that the normative minded pronounce us to have. Perhaps, because normativity can only understand this limited concept? Instead, it is a harmonious, gentle, generous, rich and grace-filled connection one small detail with another, molecule by molecule, whisper to whisper, heartbeat to heartbeat, that embraces us. If one component is out of place, or crushed by violent normative callousness, then the entire living ecology cries out in pain. Imagine, if your finger were crushed or cut off, will not the rest of your body scream and thrash? Why, then, are we Autistics punished for our intimate connections just because the normative have no such inkling of Being? (I’ve explained this in my PhD dissertation, under “elemental empathy” – please visit my official website if you want to read and learn more.)

“Get over it!” – sure, I shall, in time. But your finger… you know, that part of you?… if I break it, how soon will you “get over it”?

Executive function failure: I was unable to even insert money properly into my wallet after that incident. My heartbeat is going at a racing pace, the over-exerted organ pounding against my ribcage as if it is trying to escape. I am sitting next to Lucy, inhaling her comforting aura – which includes aroma, fragrance, physical and spiritual radiation – trying to calm down.

Today was supposed to be my rest day, I allocated time to do peaceful, restful, rejuvenating tasks that are for me, by me and help me to recover from having to comply and perform to the excruciating demands of neuronormativity in the last few weeks and months. I have to try and make the most of it now. With a part of me, and extension of my Being, violently shattered.

Wouldn’t you guard your fingers and toes if you’re working and living in an assaultive environment? That’s just what us Autistics are trying hard to do. Yet, you intervene with your behavioural therapies to force us into a catatonic state of numbness and disconnect with our most beautiful modalities. Dear Normative / Allistic people, please don’t punish us Autistics for your own lack of sensitivity and connectivity.

Who is empathy impaired now?

prepotence

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Propped up by a broom.

A huge ‘hidden’ but acute disability of mine is something that many autistics share: executive dysfunction. Teetering at the edge of a cliff, there is that sensation of falling, and yet one is still on firm ground – if just only by a hare’s breath. The feeling of executive dysfunction, of running out of what they call ‘spoons’, being at the very thin and slippery border, that unstable, fine line between (a veneer of) absolute control and complete breakdown, is a queasy, heart-rupturing silent scream. Sometimes, the tasks can be the most rudimentary, things that people just do, as naturally as any spontaneous activity like brushing their teeth or picking their nose. For example, answering multiple WhatsApp messages one after another upon emerging from a three hour meeting, without mixing up the who, how, where, when details of doing and saying. Then again, most people do not have to do all this while trying to quell gurgling, seething, frothing nausea, sometimes even excruciating migraine headaches and sharp stabbing pain in the eyes and inner ear, all from sensory overload. For the autistic person with executive function challenges, dealing with ‘simple’ chores can often turn into a battle with large roaring monsters, and staying on top of things becomes a colossal full-body, underwater wrestling match with an invisible Leviathan. For me, this is especially overpowering if ‘things’ involve many different human beings who are interacting in ways that seem to my brain to be alien, diverse, fragmented and scattered. The more human interaction is in the pot, the more cruelly exacting the grand performance becomes. Making mistakes is an inevitable and frightening feature in this unmerry-go-round. The ringing of the phone or the pinging of message notifications have become Pavlov bells of agitation and vexation for me. I have a horrible white-hot searing fear of sending messages to the wrong people, or not remembering certain details when people ask questions outside the ‘compartments’ in my mind that I’ve created for them. A person messaging me directly, taking a conversation outside a group chat but asking me questions that (in my mind) belongs to the group chat, can quickly send my brainwaves into wriggling, jiggling, wildly gyrating spams. I panic – why I do not know because it is not logical to panic – and of course I end up replying with either some garbled nonsense, or wrong information, simply because my mind has short circuited.

Even the most ‘expert’ of non-autistic ‘experts in autism’ fail to notice the subtle nuances of executive dysfunction and mental-sensorial overload as it happens in real time. In fact, I have yet to meet a non-autistic ‘expert in autism’ who can actually ‘expertly’ communicate with the autistic me. It is usually I who have to make all the necessary overtures – performing the unnatural as naturally as possible – in order to get any meaningful communication across. And autistics are supposed to be the ones ‘impaired’ in social interaction and reciprocal empathy?

This is how my autistic executive dysfunction plays out. On the surface, nothing is noticed. Not yet. There I am, deep underwater in the miry depths, engaging in mortal combat with that Brobdingnagian of Executive Dysfunction, but people sauntering by throw nary a glance at the pond, and nobody sees the tiny desperate bubbles bursting silently as they make contact with the aerosphere. All is cleverly concealed, until my spent and bloated corpse makes its way upwards, causing a huge blister on the placid surface. Then comes the shock and even derision. The accusations too.

People can be ‘aware’ that autism means a difference in neurological function. People can even be ‘aware’ of the terms “sensory overload” or “executive dysfunction” etc. But people have little or no idea how to identify the actual unpacking of all their ‘awareness’ in real time, especially if the autistic person is labelled by the non-autistic world as “high functioning” (not rocket science to figure out why I detest functioning labels, is it?). All this Autism Awareness with its fanciful labels is therefore as useful to me – an actual autistic person – as Blahblahblahdittydoodada. And this, while mildly comical, is not at all funny.

I’ve said this before and I’ll say it again. I am autistic. I love what I love with intense, all-consuming passion. And I am great at doing what I am great at doing – even rather brilliant. But I find the simple activity of keeping track of WhatsApp messages so difficult that I have developed a phobia for the sound of a message notification.

Prepotence in uncomfortable co-existence with decrepitude.

Autistic Thriving @TEDx Pickering

 

“Autistic Thriving” – Dawn-joy Leong & Lucy Like-a-Charm. (Captions available on Youtube – please turn on cc option.)

Apologies for not posting this earlier.

“Just what you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?”