Lucy Like-a-Charm – Elemental Empathic Resonance.

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Author’s note:
This piece took me awhile to complete, because I have been struggling with the devastating aftermath of Lucy’s death on my mind, body and every part of my existence. I was invited some time ago to write a reflection for a blog-journal, but upon submitting it on 4th July 2023 at 14:22 Singapore time, I was told by the editor (in the UK) that they will push back my article to end July, because the editor was too busy with other things. Coincidentally, they have just published another piece expressing almost identical thoughts, though written in a completely different style, of course. I am fine with that. The more people asking the same questions, the louder our voices become.

I have therefore decided to put mine here, unedited, with date and time reflecting the exact moment my piece was submitted via cyber-waves into the Great Unknown. Whether or not the journal’s editor decides to publish it in the near future, when and with what edits they deem fit, is immaterial to me. The Artist respects the autonomous entity of The Work, which will forge onwards along its own inexorable path, free from the tyranny of control and manipulation at the hands of humans preoccupied by and with human-centric glorification and maniacal demands of human ego. After some deeper contemplation, I feel that The Work, in this embodiment, is telling me that it would like to be launched from this Clement Space, an interstice created for me, for us both, by Lucy, because it is in its very purest essence an intimate tribute to Lucy, and to her and only her, do I really owe anything at all. When the Artist frees The Work, the Artist shall also be emancipated. I love you so, Lucy Like-a-Charm, thank you for teaching me such profound sensing.

Content warning: suicide and death is discussed in this article.

Lucy Like-a-Charm – Elemental Empathic Resonance.

For ten years and eight months, I awoke and drifted off to sleep gazing into the eyes of the purest Beauty I have ever known, my heart brimming over with awe and gratitude that she was mine to have and hold: this amazing canine called Lucy Like-a-Charm, rescued from the cruel Greyhound racing industry in Australia.

Lucy entered my life on 11th July 2012 in Sydney, Australia, during the first year of my PhD candidacy at the University of New South Wales. I did not know then, but that moment marked the beginning of the very best years of my human existence.

I was unaware of my Autistic1 identity until my early forties, hence, I belong to the category frequently referred to as the “lost generation”.2 During my childhood, I was surrounded by pets — white mice, guinea pigs, rabbits, ducks, chickens, fish, and dogs. I loved the Dr. Doolittle stories by Hugh Lofting, which I read over and over again. Even though I knew these stories were fantasy, I was nevertheless convinced that non-human animals communicated in their own languages, and we humans could do so with them, if only we learned how. Back then, people just laughed at me, but today, more than fifty years later, animal communication has become a subject of extensive study and practice. At the age of five, I developed persistent painful, visible physical symptoms that confounded medical experts, so they said it was “psychosomatic”, and people accused me of deliberately making myself sick, as if I was gifted with such a super power! Medical science has since progressed a long way, and doctors now presume it is probably an autoimmune condition (still unconfirmed) under the broader category of vasculitis.

Looking back, I realise that most of my struggles were the consequence of society’s inflexible, prejudicial attitudes towards conflicting divergences. As if chronic illness were not challenging enough, navigating an alienating human social system with its sensorially assaultive built environments became increasingly perilous as I grew older and the politics of neurotypical human interactivity became more and more convoluted. Like many Autists in similar circumstances, I found solace in the non-human domain: spending time with my pets and other creatures, plants and trees in the garden; engrossed in my chemistry set; reading, creating art and music; and collecting favourite objects. Here, in this vibrant ecology of wonderment, instead of being a hindrance or anomaly, my Autistic heightened senses, attraction towards detail and minutiae, and fascination for rhythm, pattern and order found mellifluous reciprocity.

Humanity considers itself superior to the non-human, a perception I suspect is based on what we humans do not know, rather than what we know, about the non-human animals who share our earth, in close proximity and beyond. Between us, Lucy was the finer being by far. She carried me into a dimension of symbiosis far richer than any relationship I’ve ever had before — whether with my pets or the few good humans I know and love. She has never once failed me, but I, maladroit human, have failed her over and over again, each time being humbled by her forbearance and forgiveness. No human possesses that capacity and strength of heart and soul. Lucy understood my expressions many times better than I hers. She taught me our own secret language of exuberant joy, kaleidoscopic colour, thrilling exhilaration, quirky eccentricity and reverent wonderment. For more than a decade, I completely forgot what loneliness felt like.

Numerous studies reveal that suicidal thinking and suicide rates are disproportionately high among Autistic people.3 Lucy saved me from suicide in 2016, during an intensely traumatic incident just weeks before the deadline for submission of my dissertation. Pressing her front paws hard on me, she awoke me from my dissociative state to her presence.4 In that instance, a simple thought entered my mind: “What would happen to Lucy if I died?” From that moment, Lucy became my reason to live, compos mentis: I was determined to survive because of her. 

As my assistance dog, she challenged stereotypes and transcended entrenched norms. Very early on, Lucy began to perform ‘tasks’ which assistance dogs are specially trained to do from a young age. Lucy was a former racing dog, how could she know? Yet, she knew exactly what I needed for my specific sensory anxieties and lapses in executive functioning even before I was aware of them, and decided of her own accord to help me — demonstrating acute discernment and autonomous choice. Lucy’s behaviour in public also rivalled that of assistance dogs, even before we began official training for the role.

It is common practice that when an assistance dog retires from active duty, the human handler would acquire another, either keeping the old one as a pet or rehoming the dog to someone else. When it came time for Lucy’s retirement, I was asked to consider finding a successor. I, of course, declined, but this brought to the forefront pertinent issues that greatly disturbed me about the system currently in place. Giving Lucy away was out of the question, but I could not even bear the thought of leaving Lucy at home while I take another dog out. Ours was a profoundly intimate connection. How would Lucy feel?

I have since begun to ponder more deeply the non-human animal’s mental and emotional experience and needs, beyond food, shelter and healthcare, and the problematic ways in which we currently practice human and non-human animal relationships.

Lucy was (and remains) a dynamic creative influence on my professional work. The symbiotic nature of our relationship inspired my PhD dissertation about distinct Autistic elemental empathic resonance with non-human entities.5 Observing Lucy’s way of ‘sensing’ precipitated richer interpretations of Autistic sensory-cognitive experiences in my artistic practice. Lucy even helped me to design and choose the materials for Sonata in Z (2015),6 an immersive installation exploring sensory comfort from the Autistic paradigm. From this emerged one of my most popular research trajectories, Clement Space,7 about finding and establishing conducive space for respite and restoration.

In 2021, I presented a whimsical glimpse of our close attachment in a multidisciplinary experimental digital show, Scheherazade’s Sea: continuing journey,8 featuring a cast of professional and amateur artists with different disabilities.

With Lucy, I have thrived and flourished, experienced amazing adventures beyond my wildest imagination, and my work has appeared in print, online media, television, radio, conferences, arts festivals and museums in the USA, UK, Australia, Hong Kong, South Korea, Japan and Singapore. It is therefore a straightforward, unembellished truth to state that I owe my life and worldly achievements to Lucy.

When Lucy died in March this year (2023), I became engulfed by a crushing desolation that I had never known before, and I desperately wanted to follow after her. My entire world crumbled and I reverted to my old struggles with severe insomnia.9 Concurrently, a polyphony of medical conditions, extant and ‘new’, exploded with aggressive violence into the foreground. I do not believe in artists “suffering for art”, but in reality, my very existence has been marked by affliction, a confrontation that Lucy softened and alleviated. In fact, the healing that Lucy brought reached far back into my past. More than twenty years ago, I wrote and recorded some songs expressing existential questions and yearnings, but it wasn’t until I was softly singing and playing these songs to Lucy as she neared her mortal end, that I recognised in a concrete, palpable way how Lucy embodied the answers to all my questions, and she was the ultimate gift of perfect love that I had longed for since childhood.10  My greatest regret is that I had not more consciously apprehended this exquisite truth much earlier. I shall grieve for her to the end of my days.

Epitome of pulchritude, Valiant Princess, tender lover, creative muse, and my moral responsibility, Lucy revealed the infinite prospects of vivid, sonorous magnificence that lie beyond the human obsession for navel-gazing. Yet, I wonder, is it even possible for the limited human intellect and senses to attain such percipience — to discern the susurration of the universe? But I must leave these mysteries to researchers and thinkers of the future who, without a doubt, surpass my own capacity. I made a promise to Lucy on her death bed to live to tell our story, in honour of her legacy. My mission henceforth is thus to focus on completing our ‘memoir-fantasie’, a multimedia autobiography in the form of Fantasia, Wake Up in My Dreams, as a testament to the Love of My Life, Lucy Like-a-Charm.

Endnotes:

1. I use Identity First language – Autistic / Autist – in line with the preference of the majority of Autistic persons worldwide. The premise for this is explained in numerous articles available online. Autistic advocate, Lydia Brown, wrote the following explanatory article in 2011. Lydia Brown, “Identity First Language,” ASAN – Autistic Self Advocacy Network, webpage, accessed 27 June 2023. https://autisticadvocacy.org/about-asan/identity-first-language/

2. Johan Nyrenius, et al. “The ‘lost generation’ in adult psychiatry: psychiatric, neurodevelopmental and sociodemographic characteristics of psychiatric patients with autism unrecognised in childhood.” BJPsych open vol. 9,3 e89. 24 May. 2023, doi:10.1192/bjo.2023.13

3. D. Mandell, “Dying before their time: Addressing premature mortality among autistic people,” Autism, 22(3), (2018): 234–235. https://doi.org/10.1177/1362361318764742

4. An action commonly referred to as “grounding”, a kind of deep pressure intervention that not only provides comfort during distressing situations but also serves to redirect or reconnect persons in dissociative states.

5.  Dawn-joy Leong, “Scheherazade’s Sea: autism, parallel embodiment and elemental empathy,” PhD diss., (University of New South Wales, Australia, 2016), accessed 27 June 2023, https://dawnjoyleong.com/phd-dissertation-2016/

6.  Dawn-joy Leong, “Sonata in Z, 2015”, webpage, accessed 27 June 2023, https://dawnjoyleong.com/performances-exhibitions/sonata-in-z-2/

7.  Dawn-joy Leong, “Performances / Exhibitions”, webpage, accessed 29 June 2023, https://dawnjoyleong.com/performances-exhibitions/

8.  Dawn-joy Leong, “Scheherazade’s Sea 2021 – excerpt ‘Celestial Being’, Youtube video, accessed 3 July 2023, https://youtu.be/iKbekC82VtU ; “Scheherazade’s Sea 2021 – excerpt ‘Lucy Like-a-Charm’, Youtube video, accessed 3 July 2023, https://youtu.be/lNfKW0Y6YQk ; “Scheherazade’s Sea 2021 – excerpt ‘Happy Feet’, Youtube video, accessed 3 July 2023, https://youtu.be/PAIyeZJhZZ4 ; “Scheherazade’s Sea: continuing journey, 2021,” webpage, 2021, accessed 28 June 2023, https://dawnjoyleong.com/scheherazades-sea-continuing-journey-2021

9.  E. Halstead, E. Sullivan, Z. Zambelli, J.G.Ellis, & D. Dimitriou. “The treatment of sleep problems in autistic adults in the United Kingdom,” Autism, 25(8), (2021): 2412–2417. https://doi.org/10.1177/13623613211007226

10.  Dawn-joy Leong, “Lucy Like-a-Charm – embodiment of love and grace,” Soundcloud audio playlist, 9 tracks, accessed 30 June 2023, https://soundcloud.com/dawn-joy-leong/sets/lucy-like-a-charm-embodiment

Dreams, Passion and Purpose – SUSS 2023 10 10 Convocation Speech

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As promised to some of my friends and followers of my pages, blogs and website, here is the transcript of my convocation speech tonight at the SUSS Convocation 2023: Session 3 – Undergraduate Programmes (NSHD). The Youtube ‘live’ video (link below) does not have captions, so I have put my transcript here.

Mr Aaron Tan, Member of SUSS Board of Trustees; distinguished guests, graduates, ladies and gentlemen, thank you for this honour. My heartiest congratulations on this very special occasion.

I cannot tell you how to make a lot of money, rise up the corporate ladder, or how to achieve worldly success. I have never managed any of these. I owe my very existence today to a few loyal friends, my one supportive sister and a gentle yet magnanimous creature called Lucy Like-a-Charm, a Greyhound rescued from the cruel racing industry in Australia.

(Slide 1 – Lucy Like-a-Charm, a black Greyhound is lying on a white puffy quilt, head upright, looking at camera, ears perked up and spread out, mouth open in a happy smile.)

So, what can an ordinary person like me bring to this milestone occasion? Please allow me to share a glimpse of my life’s journey. I was born in 1965, the year of Singapore’s independence. Like many in my generation, I found out my Autistic identity only in my early forties. I’ve also struggled with a lifelong, painful medical condition.

My childhood dream was to become an artist, musician and scientist. I loved animal science and multidisciplinary arts. Learning was smooth sailing at first when I was allowed to pursue my own interests at home. Sadly, my learning journey was derailed after I entered mainstream education. I went from being labeled a “kid-genius”, to “rebellious” teenager, and onwards to “lazy, useless bum”. One art teacher told me I would never become an artist because I could not colour within the lines. By the way, I still do not colour within the lines.

After a lot of stubborn perseverance, I managed to gain an undergraduate place to major in music at the University of Hong Kong. There, in Hong Kong, I met professors who recognised my unusual learning style. Nobody talked about autism at that time. I was thrilled to be encouraged to bring difficult questions to class — my professors were happy to push boundaries and expand their own paradigms. I am most fortunate to still be close friends with two of my early mentors to this very day. 

I returned to Singapore after graduating, and unfortunately spent the next twenty years employed by a former family member in a job that I was most ill-suited for. My medical condition constantly triggered, and I felt as if my entire mind and soul had been stolen from me. During those bleak years, I still managed to author and illustrate three music textbooks widely used in Singapore schools; write and record two albums of my own songs; and produce, direct and perform in two public music concerts. 

In 2007, at the age of 42, I finally broke free and returned to the University of Hong Kong to pursue an M.Phil in music composition. Faced with a confusing social situation, struggling with my illness, dealing with my father’s death and family disintegration, I was pushed to the edge of mental and physical breakdown. I sought help from a psychologist and that was when I found out about my Autism. It was a pivotal moment for me, a vindication that I was not deliberately bad, rebellious or lazy, my brain merely functions differently — simply put, I was like an Apple computer living in a Microsoft world. I am disabled according to the social model of disability. In 2012, I was awarded a full Ph.D scholarship by the University of New South Wales in Sydney, Australia. I adopted Lucy that same year and with her, began the best ten years of my life.

“Like-a-Charm” was Lucy’s former racing name, and I kept the name because it rang resoundingly true. Lucy became my autism anxiety assistance dog, and was the first Greyhound assistance dog in my university and, in fact, all of Sydney, inspiring others, especially Autistic persons, to adopt and retrain rescued Greyhounds as assistance dogs thereafter. We were interviewed by television, radio and newspapers in Australia about my research in autism and multi-art practice, Greyhounds as assistance dogs, and autism and disability awareness. She was also the first Greyhound to be invited into Parliament House during a campaign in 2016 to ban Greyhound racing.

Much more than a pet or assistance dog, Lucy was my creative muse, research assistant and the driving force for my PhD dissertation on autistic embodiment and alternative non-human sentient and material empathies. In 2016, we graduated together with the highest honour, the Dean’s Award.

(Slide 2 – Convocation – Dawn-joy and Lucy receiving their PhD from the Chancellor, UNSW, Sydney Australia, 2016)

Now, don’t get me wrong, those years were wonderful, but still no easy breeze. I faced intense internal and external challenges, which I don’t have time to tell you about, but I had Lucy with me. She was my rock of stability and strength throughout. In fact, she saved my life just a few weeks before my PhD submission, and I am alive today because of her. Lucy taught me how to recognise my own vulnerabilities and strengths, and to accept with gratitude and grace support from others.

Finally, I’d like to end my story on the importance of Dreams, Passion and Purpose. I am blessed that three of my Dreams did indeed come true, and with many wonderful bonuses too.

I was 7 years old in 1972, suffering a painful attack of mouth and throat ulcers where I could barely open my mouth or swallow, when I dreamt that I had a voice and I could sing. In 1999, I wrote and recorded my own collection of songs, a dream come true that a precious friend helped to finance. The bonus was that my existential questions in these songs finally found resolution many decades later, in Lucy.

I also dreamed of a transdisciplinary art-science PhD from a very young age. After forty years, I received a full PhD scholarship. As a child, I yearned for Love, and went looking in all the wrong places. Well, I finally found the Love of My Life, Lucy Like-a-Charm, who brought me a Perfect Love that no human or non-human ever could.

I’ve lived a privileged life, but I also faced great persecution for having Dreams at all, ironically from some of those I thought were closest to me. I not only worked hard, but I fought very fiercely for my Dreams, they didn’t just drop onto my lap. In the process, I lost most of those I once considered close friends and family. However, I found truly loyal friends both old and new who helped me along my journey, and my one good sister has never wavered in her support for me.

Since returning to Singapore, with Lucy by my side, I have exhibited my art locally and overseas, engaged in autism research, conducted workshops and given talks on autism and art, mentored aspiring artists with disabilities, been interviewed and featured in various media, delivered a TEDx talk, and volunteered at disability-focused organisations.

(Slide 3 – Dawn-joy and Lucy Like-a-Charm speaking at TEDx 2018)

Gratitude and humility now lead me onwards, as I am nearer the end than the beginning of my journey. I suffered two losses this year. One of my very best friends passed away from cancer in late February. Two weeks later, in March, Lucy died, at the age of 14 human years. My promise to Lucy on her death bed, was to complete our Magnus Opus, the hardest work I’ve ever attempted, an autobiography in the form of a multi-art multi-access fantasia, entitled, “Wake Up in My Dreams”, in honour of Lucy’s legacy of Love and Truth.

(Slide 4 – Full frontal head shot, digital composite portrait of Dawn-joy and Lucy Like-a-Charm emerging from both sides of Dawn-joy’s face.)

Thank you for bearing with me, and congratulations once again! Lucy and I wish you all the very best that life can bring, and may your dreams come true in the strongest of ways, beyond even your own imagination.

SUSS Convocation 2023: Session 3 – Undergraduate Programmes (NSHD) – full video

(My speech – around 44:29)

Creating Clement Space: Collaborative Design for Accessible Inclusion

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Apologies for the late post. This is my latest article for the National Gallery Singapore, about creating Clement Space in public places – conducive environments for restoration and respite – that is accessible and inclusive. Please click on title that will link to the article on the NGS website.

Creating Clement Space: Collaborative Design for Accessible Inclusion

Scheherazade of the Sea – ART:DIS+SWF

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I always enjoy working with veteran director and theatre maestro Peter Sau, probably the only director in Singapore that I love working with, because he understands my artistic/creative foci and my needs arising from my disabilities.

Here’s a video clip of my performance at the Singapore Writers Festival 2022 presented by ART:DIS, directed by Peter Sau. Small bits of it have been edited out, but it’s mostly intact. Watch it on ART:DIS’ Instagram page. The beautiful soundscape is by the talented Niran Jierapipatanakul, intern at ART:DIS.

For those Deaf/deaf and hard of hearing, or those unable to make out the spoken word because of the echo in the soundtrack, here is the script. For the blind/visually impaired, the sharp sounds you hear intermittently are made by my placards of key words falling to the ground.

“Scheherazade’s Sea” is the main title of my series of autobiographical multisensory, transdisciplinary work. Scheherazade, the charming storyteller in the Arabian Nights fairytale, symbolises for me the Autistic woman in many ways: a young woman, betrayed and abandoned by her own father, handed over to an evil, violent monarch. Alone in a perilous situation, she must improvise, pretend, perform, weave compelling stories and tread carefully between reality and fantasy. Her life depends on it.

A similar conundrum faces the Autistic woman. Women throughout history have been exploited and subjugated. Autism is largely male dominated, Autistic women are a minority within a minority.

How may she survive intact, without parts of her integrity and selfhood being erased or broken? How much of myself is “I” and “me”?

I describe my struggle in this way: “Performing the unnatural as naturally as possible.”

Is it even possible, now, to separate “I” and “me”? Am I really Me? What if “I” is not “Me”? What if there is no more “I” or “Me”? 

Perhaps now, after 57 years, there is just “her”?
Scheherazade moves onward, inside her vast Sea. Regardless.

(A resonant, dark soundscape begins.)

Who am I?

I am…

Amazing.

Mundane.

Modest.

Haughty.

Compliant.

Naughty.

Generous.

Selfish.

Talented.

Inept.

Withdrawn.

Confident.

Enabled.

Disabled.

I am

Perpetually,

Consistently,

Instinctively,

Performing the unnatural

As naturally as possible.

But am I me?

And what,

Or who is 

A “me”,

Anyway?

This me…

Sucked into

Your orbit

Of deceit:

Tiny child,

Defenceless,

Gullible,

Trusting.

You said

You loved me.

You said

You’d take care of me.

And I believed you,

As you robbed

Of half a lifetime,

Both I and Me –

Manipulated,

Made your servant.

Trapped inside

Lavish, opulent

Golden Cage!

You the Mistress,

I subaltern.

Resplendent brilliance,

Fragile, broken body.

Hapless dichotomy,

Yearning to Become,

Mourning the loss

Of one

Called, “Me”,

A person I did not even know.

A soul longing to be free.

And then,

Staring into roaring Abyss,

Life and death

Called to me.

Choosing death

In order to live…

I caught a glimpse,

A fleeting vision,

Of Me.

“Run!” I whispered.

“Flee!” cried Me.

And so, I and Me together,

We did.

As far and fast

As we possibly could,

As you pursued.

Hell hath no fury…

Heaven hath no peace…

Now, you want to destroy me, because I dared to leave you?

I am Bunnyblu – naive child.

I am Little Duckling – innocence betrayed.

I am Mermaid – hungering, thirsting.

I am the Seer – watching, waiting.

I and Me, we are

Scheherazade of the Sea:

“Slave to no master,
Owned by none!”

I am Nothing, Nobody –

Yet Everyone lives in Me!

worth

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It’s time for the next round of awards. The above video was made by Mediacorp to herald this upcoming event.

I mean it when I say simply that I am at best a reluctant disability advocate. My worldly “achievements” have never been a part of my conscious goals, whether long or short term. There was just one dream that I made huge effort, and ultimately extreme sacrifice, to attain: my Ph.D and the journey towards finding Selfhood, which are intertwined and inseparable. Those years as a Ph.D scholar were the very best years of my life. No regrets at all. The best thing I have done for myself. The subsequent awards, accolades, recognition and media attention were and still are secondary, quite unexpected and, to me, a burden even, which I bear as a consequence of the universe’s generosity towards me. Paying it forward.

My worth is not even remotely associated in any way any social commendation. I said it very clearly in the first chapter of my Ph.D dissertation, my path is an inexorable one, I am merely custodian and facilitator to the artistry that seems to emanate from me, but which I know is actually the result of my connection with the vastness of the universe. It is an entity in itself, with a path of its own. I follow and I allow myself to be a channel for its expressions, to the best of my capabilities. The process – the journey itself – is my reward and honour. I am less interested in the final product or what the system refers to as “outcomes” which I find dreary and at odds with my artistic quest. How does a true artist actually measure “outcomes” in terms of clicks, views, audience numbers, churning and turning statistics? It cheapens the art, and produces mediocrity. The same with measurements for prizes and awards. The structure itself is faulty. Not every winner is a true winner. Some winners are there because of political and social reasons, some because of sheer determination and relentless, repeated attempts, and then the few who truly deserve the recognition. I am Autistic, the social-political mechanisms of the normative world are a puzzle to me, but I accept that I have to live in and try to survive and even thrive in this alienating clime. Yet, in my quest to navigate this minefield, I am not at all competitive. Yes, I do speak out when I see an injustice or moral / ethical aberration – often bluntly, without the nice-nice frills and embellishments that normative society so values and insists on – but in truth, I am no warrior at heart. I merely wish to Be – undisturbed, well supported, and freed to give back to others the blessings I have received.

Thank you, world, for the amazing awards and tributes, I am grateful to have somehow unwittingly stumbled upon them. But all I really wish and yearn for is Clement Space, with Lucy, and facilitation to follow what is organic and intrinsic.

So, if there is one takeaway from this part of my adventure, as a ‘prominent’ disability advocate, it is this: YOU are worth it. Disabled or not. Your worth is within you. And only you can determine this. All else is ancillary.

something about home and inclusion

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This comes one year and six months late. So much has happened since, so many adventures. But delay and slow churning is part of how my Autistic brain works – every little detail is taken in and slowly teased apart, and this is why I need a lot of time to ponder the great many threads and trajectories and to ‘grow’ these tendrils in my mind, nurturing them into larger conjoined structures.

I’ve been revisiting some events and work that I’ve done in recent years and thinking about issues of access yet again. One show that marked a very strong and visible stride into opening up the meaning of ‘inclusion’ in practice was “Something About Home“.

“Something About Home” premiered on 11 January 2020. Singapore’s first promenade theatre performed by a cast of all disabled artists. Conceptualised and directed by theatre maestro Peter Sau, the work was commissioned by the National Gallery Singapore.

There are many things I have to unpack about my experience in this work – I even played two different roles – but I’d like to only focus on just one: inclusion. What does ‘access and inclusion’ look like? To be honest, there is not a single framework cast in stone, and most interpret and improvise as they see fit, or as it fits in with their personal, organisational or commercial agendas. This is my own professional and personal opinion and perception of how I’d like access and inclusion to look like, at a very basic level at least. I am still learning, and my views may change as my understanding and experiences develop.

Sensorially, rehearsal and team sessions were excruciating. My senses scream whenever I am locked inside the vortex of human bodies, moving around, talking at once, human smells – some really pretty confronting, including that of ammonia especially after everyone has had really long days – odours emanating from the carpet, echoes and reverberations bouncing here, there, everywhere in a horrific cacophony, and to top it all, I have to muster the inner energy required for my role. Theatre is a jumble of bodies, I get that, which is the reason I never aspired to become an actress in a professional sense. I’m acting enough, as it is, being Autistic and female, my own favourite quote I coined, “performing the unnatural as naturally as possible.” Yet, when it all comes together, it is immensely satisfying.

What kept me going throughout the intensely challenging rehearsals was the director’s dedication, going as far as he possibly could go to practise access and inclusion, and a keen, meticulous eye for detail. The entire team were united under this strong ethic, and of course, his skilful leadership. To be frank, I’m not really a rebel for the sake of rebellion. I am actually extremely compliant, but only if the leader can show me good reason for my compliance. I’m lucky to have worked with a few such leaders, and Peter has now been added to this list of honour.

What does access and inclusion look like to me, a person with multiple disabilities, then?

Most entities – especially enterprises that need to meet the bottom line financially – are focused on how to pay the artists the least possible for the best possible result. I have done work for some for a pittance or even nothing, because I liked what they were doing for the community at large, fully aware of this bottom line, and I have rejected some others that I felt crossed the line into exploitation and bullying. It is understandable, of course, oppression and capitalisation is really how most industries operate, and the arts industry is no different. However, working with Peter Sau in Something About Home was different. I discovered that we share a similar work ethic where it comes to others we work with and leadership. Professionalism. Transparency. Honesty. And making all effort to offer the highest possible remuneration for the highest possible result. Of course, we demand high quality work, and we also do our best to budget for commensurate payment. This is, to me, the fundamental spirit of access and inclusion when working with disabled artists. Every artist is paid. If the artist does not deliver then the artist does get the role or position. Simple. Professionalism is not charity.

Well, if you’re curious now about my fee, since I am the only artist in the cast with international experience. Well, I was not paid more than the others even though I played two separate roles. I was paid the same as every performer, but that was my own decision, when Peter discussed this issue with me. I chose, it was my gesture of solidarity and support for a common goal, a common ethic, because I trust the director and I believed in the work we were embarking on as a team.

To the enterprises that I have turned down, to the ones that I have given quite a sharp piece of my mind about decent payment as a mark of respect, I meant it. I have also said very often that the choice should be mine alone, whether to forfeit payment, to give back some of my fee to a good cause etc., or not. Non-payment, pitiful ‘honorariums’ and worthless ‘exposure’ should never be a presumption on the part of the enterprise or whoever invites me to work with or for them. Payment for work done is a universal principle, but ever more important when wheeling and dealing in the Arts and Disabilities. Do arts practitioners in this field even know the facts of life for any disabled person? That it costs more to simply stay alive at all?

Think about visible costs like wheelchairs, transportation, equipment and aids, assistance animals etc. Then there are hidden costs like medical bills from visits to the doctors and specialists – yes how often does a ‘normal’ healthy person have to see a specialist? Well, some of us with medical disabilities are in and out of specialist clinics on a regular basis. Then there are other add on costs like medication – again, some of us need specific and costly drug interventions just so we can function even at the most fundamental level. Healthcare is not cheap in Singapore. How about special diets and allergies? Throw that in the mix too. And finally, the most overlooked, ignored and misunderstood of all, sensory accommodations. These are complex and subtle, too often overloaded, suppressed and repressed. The costs are high, if sensory needs are to be supported.

Being disabled is extremely expensive, though the actual costs vary according to the individual and the type of disability. That is why I fight for decent, respectful remuneration, not only for myself, but for all others like me, who are unable to speak up loud and proud on this subject. The ones who have to agree to exploitation because they simply cannot afford to speak up and bear the ugly societal consequences of not getting any payment or job at all, miserable or dire as they may be. Something is better than nothing. Yes, I’ve been at those crossroads too, but I’m fortunate enough to have had ample support that helped me survive the times I’ve turned tokenism and exploitation down plus daring to lecture them in my by-now-infamous inimitable way. This was put hilariously in a neat little nutshell by a well-known non-autistic public figure and vigorous campaigner for autism and autistic persons.

“That Dr. Dawn, she just says whatever is in her mind and the whole world gets to hear it, no filters at all!”

Yes, I admit, that is me. I’m not ashamed of it, by the way, so I did chuckle a bit when I heard through the grapevine that this was being said about me, in Autism circles, of all things. Don’t they know it’s a proud intrinsic Autistic trait? How many autistic people / disabled persons are in privileged positions such that they can and do call people to task and expose the profiteering and bullying that is going on in the ‘charitable’ or ‘social enterprise’ sector?

Access and inclusion, to me, starts with giving disabled persons access to equity, respect and justice, and including disabled persons in ways that empower equity, respect and justice. Disabled artists have the right to access proper training, mentoring and opportunities to grow, we also need to be paid accordingly. What is most important to access and inclusion is not the fanciful waffling and teary-eyed videos with nice music and voice overs about how wonderful society is to include the disabled, nor is it the awkward ‘celebration’ of ‘achievements’ of disabled people having ‘overcome’ disability to become someone worthy of society’s admiration. Instead, it is what is crucial to our survival: fair payment.

Remember, I reiterate, we have higher bills to pay just to stay alive, but yet we are paid far less than everyone else, if at all. We merely want to be paid decently and fairly. Disabled people are so used to injustice that when we are given due justice, we greatly appreciate it. We are even encouraged by it, that perhaps we could do better the next time around, since we are valued enough.

A crucially important approach taken by the director, Peter Sau, is to factor in access costs from the very beginning, detailed and well planned, according to each individual’s needs. Not as an afterthought. I have had more than my share of encounters with entities who have invited me to speak at their ‘inclusion’ events but offered neither fair payment nor access costs. When asked, they have the gall to tell me that they never factored any of this into their budget. “No budget”. No budget for fair access and true inclusion? No budget for the disabled? What is your ‘disability event’ for then? These are questions I have in mind when scrutinising invitations to collaborate. One of the most insulting conversations I have had was with people who offered me – as a last option – transport money for me and my dog – and then turned around and lectured me about how ‘senior’ artists should give freely to aspiring young students to inspire them to become artists. What a twisted preposterous line of reasoning. Especially where it comes to disabled ‘senior’ artists. First, how ‘inspired’ do you think young emerging artists or students hoping to enter the arts world would be when they find out that ‘senior’ artists – disabled ‘senior’ artists at that – are expected to work for free?

Returning home to Singapore has been full of interesting adventures to be sure.

On the other hand, my experience with this production, Something About Home, has been all positive, even the sensory challenges I faced and my own mistaken lack of self-advocacy for my personal access needs, because this experience provided me with more questions to ponder and ideas to study. For example, I began to think about how I may improve the space and methodology to better suit my own functioning needs and that of others, especially in the area of the unseen senses. From here, emerged the access and inclusivity strategy that I experimented with in my own work, Scheherazade’s Sea: continuing journey, 2021.

Lastly, here is the Director’s Interview made by the National Gallery Singapore. It was Peter’s idea to include us in this interview. What better witness of access and inclusion than bringing in members of the team to speak as respected equals? This director has grasped the meaning well. This is the kind of ‘exposure’ disabled artists need and appreciate. Not the exploitation freebies and candy floss. I hope you enjoy the short video as much as we have enjoyed the entire process.

That this took place in my homeland is of great significance to me. It’s given me hope. There is indeed something about home and inclusion that we need to improve upon and at the same time much to celebrate about.

Thank you, Peter Sau, and the amazing National Gallery Singapore, for this opportunity to experience true access and inclusion!

International Women’s Day 2022 – Interview

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I do apologise for not keeping up with this website. I think I need to ask for help here. But I’ll do things cautious autistic style. In the meantime, here is the latest article to emerge on yours truly.

Thank you, True Colors Festival, for making this interview so enjoyable for me, and it’s so encouraging to see my country finally beginning to embrace neurodiversity respectfully. Baby steps still, but everything has to have a humble beginning.

Women at work: Dr Dawn-Joy Leong

(Please click on title or photo to link to the article in the True Colors Festival VOICE blog page. Thank you!)

Scheherazade’s Sea: continuing journey, 2021

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Scheherazade’s Sea: continuing journey, 2021, was a year in the making. It was yet again another groundbreaking work on several levels. Personally, I have always presented my “Scheherazade’s Sea” series as a solo artist – creator and performer. This rendition unpacks the continuing adventures of Scheherazade with a brand new approach: Scheherazade was played by the beautiful and talented singer, performer Claire Teo, and joining the team were two other artists, Timothy Lee and Ariel Koh. This made Scheherazade’s Sea: continuing journey, 2021, not only disabled-led (conceptualised, executed and co-directed by me) but also a work featuring a cast of differently disabled artists at various stages of their artistic journeys.

Freelance artists around the world struggle to make ends meet. In Singapore, where the arts is even less valued by society, this struggle can sometimes be very fierce. For freelance disabled artists wanting to turn professional, and departing from the charity models, the scenario is bleak. But artists always hold on to hope, keeping our dreams alive even if by a thin thread. Since Scheherazade first appeared in 2010, my personal and professional journey has been an amazing one, at times tumultuous, but always incredibly thrilling and never boring. It is a story of survival against the odds and unexpected achievements – all of which I owe to my party of valiant human supporters and to Lucy Like-a-Charm. Upon returning to Singapore, I decided that this part of my life’s journey will be one that is actively “paying it forward” for as long as I can create art.

Scheherazade’s Sea 2021, is about newness – finding new friends and loyal supporters, and being gifted the honour and blessing of Clement Space in the form of a differently embodied creature named Lucy Like-a-Charm. In honour of all the people who have supported me so generously in a plethora of ways, I am now using Scheherazade’s Sea to provide practical spaces for other disabled artists in Singapore mentorship and learning experiences they may not otherwise have access to without the benefit of an overseas education. Beyond the narrative and multi-dimensional aspects of the work itself, my intentions were for this work to be a true-to-live yet safe space for professional training and experience for the cast, wherever they may be along their own paths. I can only do this, of course, with continued support from my faithful friends, my younger sister Althea, and my confrère Peter Sau, who began my Singapore journey for me. I was inspired by Peter’s vigour and spirit in his seminal work “Project Tandem” and his role in “The Singapore ‘d’ Monologues,” and am thankful for our serendipitous meeting – because, being autistic, I have no idea how to network like neurotypical people do and so every angel in my life is to me truly a gift of providence. Thank you, Peter!

Scheherazade’s Sea 2021 is also a practice-based research into navigating the realm of the so-called ‘invisible disability’ as well as un-noticed vulnerability, and forging new strategies to artistic practice that provides access in ways that are unavailable in traditional approaches and methods. I am currently working on the final report and will share my findings soon.

A note on why I continue to make this work freely accessible to all, despite having been told to keep away from the public eye in order to pitch it to various festivals and events in Singapore and overseas. When I created Scheherazade’s Sea, way back in 2010, I meant it to be a richly textured work that everyone and anyone could easily partake of, without exclusions or arbitrary boundaries to separate people. That intent still prevails today, and even if it means no festival or big event would now want to feature this work, it is ok. The latter will be a feather in my cap and that of all the cast and crew, most definitely, but I prefer still to stay true to my raison d’être as illustrated here by a picture of Lucy Like-a-Charm, black greyhound wearing a turquoise collar with bright red silk flower, in down position, half her body visible, long slim legs, paws outstretched and facing left, against a textured ‘furry’ beige background, and cursive text in black reading:

“It is not my purpose to ‘fix’ what is ‘broken’ but to empower beauty
in the vulnerable and unnoticed.”
©Dawn-joy Leong 2010

I hope you enjoy the video and if you are a curator, we would, of course, love the opportunity to be featured in your festival or curated collective show if you understand my decision to make this video publicly available.

If you’d like to read my opening speech at the online premiere, please click on this link.

Goh Chok Tong Enable Awards 2021

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Yesterday was International Day of Persons with Disabilities. I had the honour of receiving the Goh Chok Tong Enable Awards 2021 UBS Achievement Award. Thank you to ARTDIS (formerly Very Special Arts) for nominating me, and to all my steadfast and loyal supporters in my personal and professional life who’ve believed in my journey and my quest, many of whom have gone outside of their own comfort zones to support me without ever once trying to manipulate or dictate my chosen path. It is this privilege of supported autonomy that is driving me to pay it forward, to offer what I have been given to those who may not have the same supports. This is my wish for all persons with disabilities, that we are given our rights for autonomy with the supports that will help us grow into our dreams and visions. Presume competence. Always. Even though it may not look the same as what you envision it to be.

My raison d’être:

It is not my purpose to ‘fix’ what is ‘broken’ but to empower beauty in the vulnerable and unseen. (©Dawn-joy Leong, 2010)