symbol

It has never happened before, and I was thus unprepared. When I saw it, I was hit instantly by a nauseous feeling in my core; it was a dull thud rather than a sharp piercing, as if a large, round and smooth stone had collided forcefully with my diaphragm, the shock waves travelling all the way into the centre of my Being. However, in true autistic manner, it took weeks and weeks of rumination, literally chewing and gnashing over this, before I could formulate a cohesive set of worded expression to talk about it at all. I exist mostly in a sensorial realm, and despite the normative world thinking that I am clever with words, I really cannot react as spontaneously with the worded domain as when in my senses, and the meanings that exist inside the sensorial realm will not make sense to the worded world. So I appear to only be ‘reacting’ now and not immediately then, because nobody was there inside my senses but myself when it happened. I needed a lot of time to translate those sensations into words.

The thing:

My profile photograph was cropped and cut up by an event organiser and published in their publicity materials. Lucy was sliced away, even though her face was touching mine. Nobody consulted or informed me beforehand.

Basic manners 101: When I send my profile photo to an event organiser, I entrust this image to them, to deal with respectfully. If it is deemed unsuitable for reasons like sizing, resolution or shape, the event organiser should get in touch with me and discuss this or ask for another one that fits their requirements. That is the standard reasoning, is it not? But I’m not a standard-issue human. To be honest, I’m generally not fussy about photographs of me because I don’t think I ever look great in them anyway. I am now an old lady with a too-fat face, bloated as a result of the medications I have to take, and wearing a buzz cut because I cannot be bothered with long hair anymore. It really isn’t an issue of vanity. So, why am I so upset now?

Ah… you see… It isn’t the act of cropping that offended me. It was who they cut away that threw me off kilter and sparked my ire. They removed Lucy.

I want to make it clear that this has nothing to do with anthropomorphism. I don’t want to pretend she is a human being. Yes, I know, many pet owners do this. That is one of the many human traits that I find quite bizarre, though I don’t tell them so, because I know they will be very hurt, and why would I wish to hurt anyone who loves their pets? In all seriousness, why should I want another human (with fur and four legs – how awful) in my life? I am not fond of humans. Lucy is a dog. I relate with her as a human would, with all my own speckled humanity, to a dog, canis lupus familiaris, in all her canid glory.

I use this profile photograph as my official one because, to me, Lucy is everything that I am, here and now. I would not even be alive today, were it not for Lucy, who actively intervened twice to save me, in a way no human ever could do. I owe her my life.

It is not a frivolous thing, I don’t say it for drama, it is just the simple truth. And there is more. Lucy was a crucial part of my PhD journey in such a way that no words could do justice to. I wrote about this phenomenon in my PhD dissertation, but no matter how beautiful my writing may have been at the time, human words as they are cannot describe the wealth of meaning that exists in our shared ecology of parallel embodiments within Clement Space. So, I do it with a visual image: this photograph of us both, taken in 2012, when Lucy first entered my life. It is a symbol of our joint existence. It speaks what words cannot.

When the event people cropped Lucy out, they not only stuck a visually awkward and aesthetically distorted photograph onto their publicity material – a too huge headshot and a cut up dog’s face, how visually pleasing can that be? – but more importantly, at a fundamental level, they violated Lucy.

Removed her image from beside me.

Forcefully separated us.

Disfigured my expression of Being, and dismembered the rich tapestry of my journey to where I am now.

“She’s just a dog.” I hear these words a lot. Humans either anthropomorphise their pets or they consider animals beneath them. Yes, I know. That is reality. I am not living in Disneyland. I do not expect these people to understand and say otherwise.

Oh, but, hey, wait: I am not a dog! I was the one who submitted this photograph, I placed it in their hands. So, even if they don’t like dogs, would they not at least treat my choice with the respect that a fellow human being ought to have in this human-centric world?

Discombobulation. I do not understand it. The fact that it has never happened before in the last 8 years at numerous events in different countries makes this even more mysterious. Is this a cultural quirk that I never knew existed in my own homeland? Or just one random scissor-happy, dog-hating human?

Irony? They – the event organiser – would not even have heard about me, nor invited me to their event, were it not for Lucy Like-a-Charm. A quiet, unassuming, undemanding Greyhound, rescued from a former life of torture and abuse at the hands of greedy, barbaric humans in the dog racing industry. She has lived with poise and grace, despite her past, surpassing most of the pet dogs I have ever met in her dignity, quiet confidence and forbearance. I have had pet dogs before. All my life, in fact. I loved them all. As pet dogs. But Lucy is not a pet dog. Nor is she only an assistance dog that can be replaced once she is past her usefulness. There is only one Lucy Like-a-Charm to whom I owe my presence in this world of the living, and my life’s greatest joys and achievements. There would have been no Dr. Dawn-joy Leong were it not for Lucy Like-a-Charm. I don’t say this with frivolity. It is humbling, yes, that a dog could do this, but this human has learned from this very unique dog what it means to humble my navel-gazing human-centricity and appreciate lessons from an entity that is not of my own specie.

So, if you are reading this as an event organiser, even if you do not quite understand all the above, even if it is just nonsensical drivel to you, just remember this one point then: if I ever hand you this photograph, please make sure you ask me before you defile Lucy’s image. And if you think a photograph of a dog is inappropriate to feature in your ‘serious’ event, then I want nothing to do with your event. I don’t need you. But I need Lucy and I wish to remain faithful to all she is to me.

Thank you.

meds & bets

Growing up, I always had doctors come to the house – we called them ‘Uncle’ because they were dad’s close friends. Nowadays, each time I go to see my favourite GP, I miss those days when doctors did house visits. It’s a literal nightmare at the clinic, teeming with germy humans (well, ok, why else would they be there, right?), many have no idea how to keep their juices to themselves. There was one lady today coughing and hacking and making all the noises appropriate for whatever she was suffering from. Horrifying, even without a global pandemic hovering above, but in the context of COVID19, I shuddered. Thank goodness our government has made wearing masks mandatory, with strict penalties for non-compliance. One occasion where I am glad compliance was enforced without exceptions, even though I am not keen on compliance much, this is imperative. Throughout my adult life – as soon as the ‘Uncle’ doctors retired and no longer came to our house with their little black leather bag of mysterious potions and sharp needles – I have dreaded going to the GP’s clinic. I cringe and agonise about what horrible stuff I could catch there, even if I didn’t present with that particular kind of ‘sick’ at the beginning. It is almost without exception a chaotic mess of humans in various states of un-wellness with human droplets and other infection carrying fluids being happily and sometimes lavishly shared, like a twisted, eerie unholy communion.

Continue reading

gentle clemency

Lucy Like-a-Charm entered my life on 11 July 2012. A quiet, gentle clemency walked in through the doors and thus began the best years of my life.

We celebrated our eight anniversary yesterday. As softly as she came. No fanfare. The family went out – furry kids and all – and we had the house all to ourselves, just like old times again. Clement Space is Lucy. She inspired my research and practice, and for me, she is the ultimate embodiment of Clemency.

My super generous and supportive friend Minh sent me a Fujifilm XT2, and I have been learning how to use it. No prizes for guessing my favourite subject. I took a break from work and just spent time photographing my girl, experimenting with various settings in this amazing camera, and cuddling with her. Oh, and she had a giant sized chewy roo strip from Loyalty Pet Treats too!

My dinner. Lucy ate hers up so quickly, I didn’t have time to photograph it.

Later, when the family returned for dinner, Lucy’s uncle, my brother-in-law, cooked us beef steak, and she had her special portion.

Happy Gotcha Day, my beloved! Thank you for eight beautiful years.

nefelibata

Cloud walker.

Dreamer.

Othered.

Living on the peripherals, meandering in and out… falling up and rising down…

Damned human-centric consciousness… burnt out, imploding, imploring.

The price to pay is small, this detachment, I am not lonely, not even alone – because the universe holds such infinity in its richly textured, fragrant and abundantly threaded tapestry. Always connected, always embraced.

But this human shell… this navel-gazing, glazed, muffled, bleary-eyed sightedness.

What tyranny.

What irony.

Such exquisite pain. Excruciating beauty. Always just out of reach.

Incarcerated by my humanity.

Lowest of life forms – barbaric viciousness, swirling toxicity.

Our blood runs thick with evil.

Yet, she waits for me.

Patiently.

Unspoken wisdom of ancient sentience.

What manner of creature is this?

Such grandeur enwrapped gently in humility.

Angel in my bed.

Cloud walkers. Together.

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

COVID19: sonata of comfort

musicscores

What shall I play today?

Conundrum. On the one hand, I am loving this stay-home directive so very much, there aren’t enough hours in the day for me, in fact. Working from home is peaceful, and I am much more productive.

But here’s the rub. The painful dichotomy. My anxiety levels are rising and bouncing off the walls and roof. Why? Simply this: so many of my friends around the world – autistic ones too – are just not coping well with this enforced isolation. No, I am not talking about those who are grumbling incessantly about their deprivation of haircuts, spas, manicures, pedicures, massages or ‘bubble tea’. I am talking about those people with mental health struggles who are in various states of panic, despair, incapacitating depression, feeling suicidal and self-harming. I feel my friends’ pain, but I am helpless to alleviate or ameliorate. I am at a loss for words, I don’t know what to say and am afraid to say anything for fear of sounding too glib or worse still, in case my own personal joy becomes offensive to them. Continue reading

COVID19: zoom-boom

Zoom

My friend Maxfield Sparrow, autistic advocate, activist, writer, poet, musician and all time amazing person, wrote this article: “Zoom Fatigue: A Taste of the Autistic Experience“.

Here are some really excellent points from Max Sparrow. All true. For me, apart from already struggling with the things Max has pointed out, Zoom / Skype meetings are still the lesser of two terrible evils called “meetings”. In-person meetings mean, for me, sensory overload and risk of infection each and every time. Hypersensitivity + immunocompromised = every activity is a careful choice. Each time I attend a work-related meeting or event, or even a social gathering, I have serious choices to make. Either I choose to go by public transport and end up at the meeting bedraggled, sweaty, fearful, anxious and already completely drained, or I spend precious money on hire car and get there with some part of my brain and physical function still intact. Then, during the meeting or social gathering, I endure sensory overload from the built environment, plus sometimes distracting gossip and irrelevant chatter, and I am still struggling to grasp the essentials of the conversations. In-person meetings also tend to go on for lengths of time that to me seem like ‘forever’, because non-autistics love congregating. Not only am I being sensorially bombarded and physically depleted in the most wasteful way (i.e. spending more than is needed, with no gainful returns), my anxiety is compounded in stretto crescendo because I have no idea when this nightmare is going to end. The time is up, but people are still waffling and laughing and cracking jokes that I do not find funny in the least but just automatically laugh along with because what else am I to do? Whereas, the horror of Zoom meetings tend to end more quickly and people are mostly on-point. I surmise that this is because non-autistic people find Zoom meetings dissonant to their natural modus operandi and hence are less inclined to linger? Anyway, for the autistic and those with specific disabilities that put us at disadvantageous positions where functioning is concerned, it’s all about living an exhausting existence because this world system just isn’t built to be the least bit conciliatory towards our modalities. 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: travel restrictions

The above is one of a series of three videos I created for the Big Anxiety Festival in Sydney, 2017, a wryly humorous explication of my sensory experiences traveling around Sydney in public buses. But what my videos do not speak about is the seriously perilous danger that I have to contend with when commuting by public transport.

I was reading this article in the morning over breakfast and a deluge of thoughts came rushing in. The article explains how just one cough can spread deadly germs to many, because the germs can linger in the atmosphere even long after the person who coughed has left the scene.

Here is the unraveling of one of the many threads. It is about travel and restrictions, but not the kind you might know. Continue reading