Seeing Singapore Clearly through the Eyes of Disability

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!

Children’s Biennale @ National Gallery

I was invited to the Opening of the Children’s Biennale at the National Gallery today. My anxious mind of course required a two-day preparation for this, but I had been looking forward to it since the invitation arrived in my email’s Inbox. The build up was, of course, a gradual crescendo at first, and then a rapid stretto build up as the event drew nigh. Anxiety + hypersenses + attention to detail all jumbled together. Creating order from chaos is part of the reason behind all the careful planning that precedes every single occasion.

The National Gallery has now become my favourite art space in Singapore. I love old historical buildings, and this one is a grand one. There are many small little quiet nooks dotted around the huge expanse that one can duck into for some respite, if things get too overwhelming. There are some inaccessible spaces that wheelchair users would be unable to reach, unfortunately, due to the nature of the building, but they’ve done their best to make the exhibits as accessible as possible. I am truly bowled over by the National Gallery’s efforts towards access and inclusion, something I’ve not experienced to this extent in Singapore before. Lucy is welcome in this space, and they treated us like royalty the first time we came (which was a tad over the top, but I deeply appreciate the care they took of us, a stark contrast to always being stopped at the door with many a gruff, “NO DOG ALLOWED!”), but I left Lucy at home today because she wasn’t feeling very well.

Continue reading

Uniquely Me Episode 1 – a perspective

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The first episode of “Uniquely Me” – a series about autism and autistic lives in Singapore – aired last night on MediaCorp’s Chinese Channel 8. Immediately afterwards, there were rumblings and rants emerging from the adult autistic community in chat groups and on Facebook.

Background

Some contextual background is needed before I launch into my own perspectives and reactions to this twenty minute show.

Autistic people – we are an oppressed and traumatised, vulnerable and hurting community worldwide. As autistics, we are already predisposed towards hypersensitivity, detail orientation, and communicate with the world in ways unlike the normative. Add to this the accumulated collective cultural history of Autism (see Steve Silberman’s “Neurotribes” – the best book published thus far on the history of autism), and the specific situation here in Singapore, where the perception of autism as a whole is mired in the old medical model, and autistic people are generally presumed incompetent rather than competent, completely devoid of our own voice / voices: we have thus acquired a collective trauma, and individual heightened anxiety around the subject of Selfhood. The setting is a painfully raw, tender, largely confused and ignorant, and emotionally volatile scenario. It is not surprising, then, that many in the adult autistic community have reacted explosively, with anger and shock, at this very stark presentation of autistic persons with complex needs in the first episode. Continue reading

Autistic Thriving @TEDx

Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018. Come join us and hear my ideas on how autistic and non-autistic people may grow and thrive, not despite autism but because of the unique features of autism, and what society can learn from autistic persons.

[Autistic Thriving – Dr. Dawn-Joy Leong]
There is a great deal of ‘awareness’ these days about Autism – mainly from non-autistic observations. However, where are the Actually Autistic voices in this cacophony of opinions and interpretations? What is it like to be autistic? Discover how Dawn learns to thrive within her autistic ecology, not despite but because of her autism.
Grab your tickets here: https://tedxpsthrive.peatix.com/

[自闭世界的生意盎然]
自闭症在当下取得了广泛的关注,只不过这些观察结果都是从非自闭症患者角度获得的。可是抛开这些不和谐的观点和解释,我们从何听到自闭症患者的真实发声?作为一个自闭症患者是什么样子?在这场演讲中,Dawn会向我们分享她是如何在患有自闭症的情况下茁壮成长。

And Suddenly…

And Suddenly

Cast Photo by Victor Kuansong Zhuang. Thank you for permission to use.

Yesterday, I attended the final performance – a matinee – of “And Suddenly I Disappear: The Singapore ‘d’ Monologues“. My friend, Alvan, has written a brief review of the show here. I like some of his views on it, and I highly recommend a quick visit to his blog post.

This isn’t a review of the play, really, it is more a sensory recollection. Continue reading

Acknowledgements

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Sonorous Repose – Lucy Like-a-Charm 2015 by Dawn-joy Leong     (please do not reuse without seeking prior permission)

Dear Friends and Supporters,

We have made it! The PhD has passed muster and now it’s time for acknowledgements.

 —-

Scheherazade’s Sea – autism, parallel embodiment and elemental empathy.

 Dawn-joy Sau Mun Leong, UNSW Art & Design, April 2016

Dedication:

To my father, Dr. Leong Vie-Ying (1930-2007).

Acknowledgements:

This work would not have been possible without the following:

Deepest gratitude to my supervisors,

Professor Jill Bennett and Dr. Petra Gemeinboeck,

for your patience, guidance, advice, support, and for believing.

Thank you, Dr. Sally Clark, for your advice, encouragement and support.

My Lucy Like-a-Charm

My family:

Thank you, mother, Molly Chye Gek Ong, for your care and fortification.

My beloved baby-sister and faithful champion, Althea Leong,

thank you for always being here, there, and everywhere for me.

Dear brother-in-law, Robin Sing,

thank you for your patience, sustenance and unquestioning support.

My canine nephews, Bizcuit and Tiny Sing

Thank you, my friends who have played important roles in my journey:

Yee Sang, Ho

Rick Feedtime

Minh Vuong

Kateryna Fury

Colin G. Marshall and Misty Marshall

Shan Patterson and Sally Patterson

C.J. Wan Ling, Wee

Margie Anne Edmonds

Brad Beadel

Gavin Koh

Boon Ling, Yee

Shane Fenton

Andrea Kingan

Rosemary Wilkinson

and

Everyone who has walked a part of our journey alongside us, however briefly, every single moment has mattered.

The Big Anxiety Project

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The Big Anxiety Project

The BIG Anxiety Project is an innovative citizen science venture developing creative approaches to health research and data visualization.”

Lucy and I are honoured to be a small part of this amazing project, which kicks-off on 5 June 2016, at the Museum of Contemporary Art, 3-6pm, level 6, with this interactive talk-cum-discussion session.

Friends in Sydney, if you will brave the weekend’s wet and wild weather, please do join us at this interactive event.

If you are not in Sydney or unable to attend the above event, please take part in the Big Anxiety Project’s survey on anxiety at the Black Dog Institute: click here!

A Thin Fine Line

This is a musing about invasion of privacy and the thin fine line between funny and sinister.

When one has been accorded much care, consideration and respectful support from a great number of people, one may become not only quite overwhelmed, but also lulled into a feeling of security, such that when this sense of ‘safeness’ is challenged, one becomes suddenly unsure how to react. One incident was highlighted in my previous post, “Confronting the Invisible.”

Recently, I have been encountering a series of little events, each one so minute in isolation that only the very observant or meticulously private person would react to, let alone notice at all. I have tried hard, in deference to the more prevalent “hey, relax!” laissez-faire social perception of the majority, to downplay in my own mind, each of these events which nevertheless irked me greatly. However, now that I am faced with an escalating rate of recurrence of these ‘small things,’ and the accumulation of which are forming a disturbing but as yet nebulous denouement with an accompanying mixture of utter weariness and foreboding, I am finding harder and harder to brush them all off. Continue reading

Confronting the Invisible

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Guardian Angel

This is a musing about confronting, and the confrontation of invisible disability.

What happens when the invisible is confronted in a stark and abrupt instant?

A recent encounter inside the lift on my way up to my art studio brought me once more, eyeball to uncomfortable eyeball, with the conundrum of ‘framing’ an invisible neurological difference. In my case, it is autism – and this is an issue that autistics living in the normative realms are constantly faced with, because we exist and function in the midst of, and juxtaposed with, the ‘normalcy’ of neurotypical constructs and systems. Continue reading