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.

heard & included

The Autism Network of Singapore put up this set of inclusive memes, and they used Identity-First language for this post and also to include this in their future posts after I explained to them that the vast majority of Autistic people around the world are proud of our identities and prefer to refer to ourselves as Autistic / autistic, rather than “with autism”.

It’s great to be heard. It’s wonderful to see that our voices are validated. It’s encouraging to know that an autism organisation want to walk the talk alongside actually Autistic people. It’s progress when we are heard and included in the conversation: About Us With Us.

Thank you, ANS!

Seeing Clearly

Here’s a post copied from my ‘official’ website. It is a piece that I wrote for the Birthday Book 20/20.


This morning, the Birthday Book 2020 arrived. Even though I don’t get a single cent of royalties from this book, I am glad to have had the opportunity to contribute to this collection, and I chose a topic that is important to me: disability. I’m allowed to share my own essay in my networks, and so here it is. But before you read the piece, please check out my Facebook post for some background information, and do please join us at the launch if you can. Thank you!

And here is the short essay:

Seeing Singapore Clearly through the Eyes of Disability – Dawn-joy Leong
First published in The Birthday Book 20/20: Seeing Clearly edited by Selina Chong and Chua Jun Yan (Singapore: The Birthday Collective, 2020).

I was born in the year of Singapore’s independence. My childhood memories were filtered through the lenses of my immediate world. To me, Singapore was a small, brave country with a firm but capable government dedicated to creating better lives for citizens.

My parents had friends from diverse backgrounds and I was taught to embrace diversity. Father, a dental surgeon, often saw patients who could not afford to pay for treatment. Out of gratitude, they brought him whatever they had: home- baked cakes and food, eggs from their kampung chickens and even the occasional live fowl. Mother was a teacher, and she used to give extra lessons to students who were floundering and unable to afford private tuition. I remember mother bringing me along during some of her home visits, armed with books, stationery and food for the students and their families.

I lived a life of relative privilege, but my parents inculcated in me a sense of civic duty. They taught me to view everyone with compassion and respect. I also firmly believed in our National Pledge’s commitment to “justice and equality”. Despite being labeled as “eccentric”, I enjoyed a healthy social life, and employment was not an issue. Unaffected by discrimination or injustice, I naively believed there wasn’t any in Singapore.

Then I found out at the age of forty-two, while pursuing an M.Phil in music composition at the University of Hong Kong, that I am Autistic. After Hong Kong, I received a Ph.D scholarship at the University of New South Wales, Australia. I openly and proudly identified as Autistic, using the Identity-First language preferred by most Autistic people globally. I acquired a psychiatric assistance dog, Lucy, for my sensory anxiety, with the legal right to have her with me everywhere I went. I helped to found an Autism Research Group comprising autistic and non-autistic members across different disciplines. I was awarded my school’s “Dean’s Award for Excellence in Research”, an accolade given to one top PhD candidate per year.

It was only upon returning to Singapore, proudly identifying as Autistic, that my erstwhile gentle and salubrious world cracked open to a harsh reality. In late 2016, Lucy and I made an exciting journey to Singapore, traveling in-cabin together for the first time. My elation quickly fizzled away when I stepped out of Changi and found that Lucy was not welcome in most places. Assistance dogs for the disabled have existed for many decades, yet most Singaporeans – including those who work in the field of disability – had never heard of them, apart from Guide Dogs for the blind.

The stability of full-time employment eluded me. Non-disabled people claiming to be disability experts corrected me in my use of self-identifying terminology, as if they knew better. When I asked for an honorarium to speak at events, I was told variously that I should be grateful for the “exposure”, or that I should work for the benefit of my “own community”, or that experienced artists should give talks without payment to”‘inspire” young people.

Strangely enough, these people were paid to do their jobs in whatever enterprise they represented. Here was my reply: I did engage in volunteer work. For example, I was and am a Board Member of the Disabled People’s Association. But it is my right – and not someone else’s – to decide to whom I offer my time, energy and expertise. Disabled people have higher bills to pay just to exist. How are we to do so if all we ever did was volunteer work?

Where are the voices of those who are actually disabled in this cacophony of “awareness” and “inclusion”? Disabled leadership is not about exclusive power or taking away jobs from the non-disabled, but rather having a dignified place at the table where our voices – personal and professional – may be valued alongside our non-disabled peers. 

My story does not end in tragedy and hopelessness. After two years of knocking repeatedly at the nebulous “glass ceiling”, I decided that the way forward was self-employment. I met disabled and non-disabled people who were sincere and committed to the goal of equity and progress and unafraid to step into uncharted ground. These included university professors, young researchers, representatives of organisations, and people with diverse disabilities joining together to widen horizons beyond old models of charity.

In 2019, I co-founded the Disabled Artists’ Collective, a pan-disability group of freelance artists. I began collaborating with theatre producer-director Peter Sau, a pioneer in theatre practice with disabled artists. I helmed Singapore’s first disabled-led artist residency at library@orchard, featuring three neurodivergent artists from the Disabled Artists’ Collective. In June, I was one of two Autistic Plenary Speakers at the Asia Pacific Autism Conference 2019, marking the first time actual Autistic persons were represented prominently in a major autism event in Singapore.

In 2020, six members of the Disabled Artists’ Collective performed in a groundbreaking promenade theatre show, “Something About Home”. It was Singapore’s first fully accessible and inclusive mainstream professional production featuring disabled artists, but not limited to the arts and disability platform. The National Gallery also commissioned my work, Clement Space, a calm room based on my research in Autism, designed from within the Autistic paradigm.

As a disabled person, I see Singapore more clearly now than ever before. Insecurity, ignorance and exploitation prevail, but there is also sincere intent, commitment, and vast potential. I wish for a Singapore where the disabled and non-disabled have equal rights to stand together as “one united nation, based on justice and equality”.

Here is my raison d’être:

“It is not my purpose to ‘fix’ what is ‘broken’, but to empower beauty in the vulnerable and unseen.” Scheherazade’s Sea, 2010.


To order the book, please head to the Birthday Collective’s website. They’re offering a 10% discount for pre-launch orders (online launch happening 22 August this Saturday!). ** I don’t earn a single cent of royalties but do please support this good work!

What’s the fuss about animals and autism?

It’s been more than a month since I wrote my response to the terribly biased and poorly researched article in Spectrum on autistic researchers. Since then, I’ve not stopped ‘going on’ about the subject because I feel a gross injustice has been done – in fact it is a multidimensional injustice. But I’ve been told to stop, even by autistic people, because I am passionate about a topic that most people do not understand and/or abuse, a subject that has been shamelessly mistreated and exploited, resulting in a great deal of hurt and damage to autistic people, as well as to autistic researchers who are actually researching this connection. Yes, I am talking about Animals and Autism. I already know one autistic researcher who has been deeply wounded by this article. The root of the problem is ignorance. This topic has been hijacked by shameless ignoramus, and the majority of those who are offended in the process are reacting also out of ignorance, and the proverbial baby gets thrown out with the dirty bath water. It is an important ‘baby’, and one that I firmly believe will shed even more stunning brilliance to autism research, if only it were more understood and pursued further.

I am no expert myself. I wish I could be. If I had time and finances on my side, I would embark on another PhD in this area. Sadly (for me), all I do have now is this little tiny glimpse. Nevertheless, I will not stop saying what I am compelled to say. I will continue to encourage young autistic researchers who are interested to pursue their dreams in this field. If you have seen something so amazingly exquisite, something that has changed you from the very core, then you will not cease to speak about it. Someday, the world may see what we see. For now, it is a lonely thing to be a minority within a minority. The passage below is taken from my PhD dissertation, and can be found in the chapter Space of Mind.

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ache of simplicity

分分鐘需要你 – George Lam. When I first heard this song, ages ago way back when I was a wee li’l teenager, I liked it very much. It’s a ridiculously simple melody, with almost goofy-tacky words. The sonic clarity appealed to me, but the meaning of the lyrics never hit home in this resonant way until I found Lucy. Throughout my life, I had been ‘programmed’ by people who ‘knew better’ than me, about love, relationships, what to do, what not to do, what I should look for, and how to get what I ought to get. Some were well-meaning, they genuinely wanted me to be happy, and others were, well, manipulative with various levels of artistry, if you can call that an art. They were all horribly wrong. That was because none of them understood, ME. I didn’t even understand me, until I began to discover the light, when I was officially diagnosed as proudly Autistic. But even then, it took a few more years for my brainwashed mind to rid itself of all the rubbish that was stuffed into this gullible Autistic Bunny’s limited brain. When Lucy entered my life, she brought along with her a knowing-ness, and I finally began to become Me, the person that resided in my faraway most primal origins, the person who survived the deluge of terror and still remained hidden, deeply embedded, confused and afraid to emerge. Lucy gave me Life, as I had never known before. And I finally understood why my young soul was so drawn to this almost infantile love song. That is because this is what Lucy has taught me. Love in its purest, unsullied, uncrowded and most powerfully fulfilling. Lucy is the love of my life, and ours is a symbiosis that people mistake as anthropomorphism. They think I am making Lucy a human so we can be close. I don’t blame these people, they only understand human love, even most autistic people will find it hard to grasp, because most of us have grown up brainwashed by ABA or other familial and societal pressures to become human-centric in all our foci – be they work, personal, mental, physical or emotional. But I do know some people understand this. And I am writing for those who do, as well as those who want to see.

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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.

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COVID19: masks & masking

I love masks. I’ve loved them since a very young age. I used to make all kinds of masks for myself, so I could pretend to be this or that super hero or anti-hero character. I remember enlisting the help of my grandfather, who was living with us at the time, to make them. He also helped me create swords and various kinds of weaponry out of cardboard so I could perform the swashbuckling stories that were slushing and sloshing around in my head. I didn’t know this was yet another facet of my Autism, of course, but on hindsight, it was indeed a flashing light, the fascination for masks, masking, performing personas and experimenting with myriad characterisations, because of the innate sense that my own Being was somehow not desirable to the world around me, and so I learned to externalise the internalisations and contemplations of personhood very early in life.

OK, I know masks are not everyone’s ‘thing’. In fact, many – autistic and non-autistic alike – abhor wearing them. Yes, it is extremely uncomfortable to have something covering half my face, especially when I also have to wear spectacles, and it is hot and humid here in Singapore. My Autistic hypersenses are actually substantially distressed. I absolutely sympathise and empathise with people who detest wearing masks. Many people also develop skin issues, like pimples and other itchy-scratchy reactions, myself included. My glasses fog up too. But you see, now that I am no longer interested in developing personas, I still embrace the mandatory mask wearing, but for a different reason in a different context altogether: it is because I am immunocompromised.

So, this time around, it probably isn’t my autism that is embracing the mask, it is my medical disability, and over fifty years of suffering – I kid you not, I don’t use that word loosely – that has impacted the way I am now reacting towards COVID19 and all it horrors.The virus itself is already terrifying, the more I read about it (and I have been voraciously devouring the alarming and depressing details being spewed across online media – medical journals, news articles, COVID19 updates etc) the more apprehensive I become, but it is actually the humans spreading it around willy nilly that is causing 90% of my anxiety. There is no way to control human behaviour, and ‘normal’ people are the worst people to trust in a pandemic. They are the first to flout any kind of safety regulations, and sad to say, the first to grumble and complain about the slightest inconvenience or disruption to their ‘normal’ filthy habits.

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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!

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.

fan boy

Lucy has a Fan Boy. His name is Maxi. He is a ten year old Shitzu, completely blind but full of vim and vigour, and he loves stalking of her. He follows Lucy wherever she goes, and he has a cute ‘bump-bump’ game where he’ll bump into her on purpose (he can smell her) and she’ll let out a squeal or yelp to tell him to back off, then he’ll meander away for awhile, before making his way back to lie down quietly beside her. Maxi belongs to my sister’s best friend, and he comes over for playdates and staycations quite often. He brings a lot of jolliness to sleepy lazy old Lucy. They’re not exactly a ‘loving’ pair, but they’re full of surprises, and such a joy to just observe. If only I could fathom the mind of a dog, it’d answer so many questions about my own humanity that no human can answer satisfactorily. No human is able to bring such unadulterated joy to my heart. How can humans still insist they must be the superior specie?