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

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

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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)

creeps & creepers

A cover version, quite lovely too. I was sent this song by a former boyfriend, some self-styled maverick quite talented musician person, and it turned out this was his one and only honest declaration ever – yes he really was a creep. No joke. Beware, you people with autistic children, we grow into adults and we’re still not very socially savvy! Creeps love creeping around us.

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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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

finale – SYNC Day 5

Day 5 of the SYNC programme came and went. The going was at times ponderous, because the body was weak and felt like a sack of potatoes, trudging, groaning, creaking and sighing. But I was a tad sad that time had passed so quickly.

I did not bring Lucy, because I had a dinner appointment later that day, and the long hours would be too much for her. But I missed her terribly – it was visibly hard for me to get through the day without her. Our programme coach and instructor remarked that the difference in me was obvious.

There was much learning, pondering and reflecting – but I will not delve into that here. These little snippets are sensory-focused, they are about my sensory experiences of SYNC.

Here are the few photos I took on Friday. No Lucy, so not much inspiration left.

Food. There was a lot of food. Thanks to Maureen and the kind folk from Very Special Arts (VSA). One artist brought their retired guide dog – she is a lovely sweetheart, but such a huge contrast from Lucy’s still, quiet, regal poise. There was a bit of to-ing and fro-ing settling the dog down, and occasional froufrou noises generally made by the owner telling the dog to calm down, which actually stirred the air so much that it had the opposite effect on the poor dog. Methinks some basic dog handling 101 (training) is needed here, for the human, not the dog. At one moment, I walked by and the darling dog got out from her ‘tuck’ position under the table, sat on my feet and leaned resolutely against me, refusing to budge. Anyone who understands some basic doggy body language would know what that meant. My heart goes out to the dog each time I see her. But the smell… I cannot deal with stinky dogs. So very very sorry, darling.

I was a little sad that the week went by so quickly, even though I was already exhausted right at the beginning, and nearly fainted from fatigue twice on Friday afternoon.

Enabling Village is a beautiful place – despite its tacky and almost inappropriately ableist name. We were welcomed every morning by the friendly security people – especially Lucy, which is a marked difference from most other places in Singapore. When I arrived on Friday without Lucy, the lovely men asked me where she was and why I didn’t bring her. One of them whipped out their mobile phone and showed me the photograph that he’d taken of Lucy the day before, on Thursday. They kept saying how beautiful she is, and how still, calm and gentle. I should come here more often with Lucy, perhaps?

The village is a strange place, in other ways, though. Heavy doors make it difficult, if not impossible, for people in wheelchairs to get through on their own. Mirrors in the ladies’ toilet are positioned so high that people in wheelchairs can only see half their reflections. There is no soap dispenser in the disability toilet – do they think that disabled people don’t need to use soap to wash their hands? There are no electric outlets in the training room – how do they expect disabled people with electronic devices to charge their equipment when using the training rooms for long periods of time? And the big bugbear I have? There is no quiet or calm room for people with disabilities – only a “carer’s pod” for carers!!! Isn’t this place for and about people with disabilities?

Sigh.

Nevertheless, having something like Enabling Village at all is a big step in the right direction for Singapore, I guess, though it also shows very starkly that we really do have a very long way more to go.

gotcha! – SYNC Day 4

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Day 4 – Happy Gotcha Day! Today marks the seventh year of our journey together.

Another intense day at SYNC programme. I am utterly physically exhausted, but it was good.

Here are some images captured from our day – there was no fanfare, but a quiet confident gratitude, celebrating the life-changing event of Lucy’s arrival. There needs be no more words for such clemency.