This is a casual piece about my views on behaviourism in general, and my own lived-experience of accumulated trauma and vulnerability as a consequence. It is not an academic article, so I have not provided citations, though the reader can easily find supporting evidence using Google to do a search where interested.
My strong objection to programmes like ABA and all those behaviour-focused interventions that try to rigorously train Autistic people into mimicking acceptable normative behaviour, and unquestioning compliance to normative societal systems, is not only because they are generally hideously abusive and de-humanising, but more crucially devastating in practice, in my opinion and lived-experience, is the longterm, far-reaching harm that these programmes do to the organic, intrinsic functionality of the Autistic human at the very core. The Autistic person is violently cut away from their natural, unique instincts, and forced to adopt superficial behaviours that do not support the Autistic in any deeper meaningful way, leaving them incapacitated, quietly languishing, silently roaring, weeping in despair and grappling with hapless rage, captive subaltern inside the nauseating swirl of normative Neurocolonialism. It is therefore not surprising to find that the majority of Autistic persons who have grown up receiving ABA now report symptoms of Complex Post Traumatic Stress Disorder.
Update: Our memoir-fantasie has been renamed, “Lucy Like-a-Charm,” in honour of my beloved Lucy.
Scheherazade’s Sea Website is Active! Please check out our ongoing activities, photos, musings, and works-in-progress at https://scheherazadessea.wordpress.com/.
Above is one of my favourite photos of Lucy and myself, taken in 2014, in Sydney, Australia. We are cuddling, leaning intimately cheek to cheek, eyes closed in peaceful contentment. I wore a fuchsia pink hoodie and Lucy is wrapped snugly in a red flannel snoodie that I sewed for her. We had just moved into a dilapidated house along William Street, Paddington. It was old, and cold, but we were warm and cosy together, curled up in a small couch with a bright pink throw rug. I created a fantasia image from the original photograph, placing us in the midst of a flurry of large, round peonies, against blue sky and white clouds. The poem, “Wake Up in My Dreams”, which will also be the title of our epic memoir-fantasie, when completed, appears on the right of the image:
Lucy Like-a-Charm, love of my life, and a central figure in my journey, left the mortal realm in 2023. Since then, I have begun working on the final chapter of our epic multimodal transdisciplinary autobiography. It has been a bumpy process – churning, swirling, turning, tumbling, weeping, laughing, mourning, rejoicing, flying and falling all at once. I even survived a near-death experience a few months after Lucy departed, which forced me to stop working outside of home for an entire year. Art, with passion and purpose, is never easy. And I know that I signed up for the challenge when I broke away from the Golden Cage of pampered subjugation. There was never a moment that I regretted this concerted decision and action. But after Lucy suddenly left me, I was thrown into a dark vortex, lost in a desolation I had never known before. I simply couldn’t imagine a life without her anymore. Yet, she returned to me, vibrant and resonant inside my grieving spirit, bringing resolution to unanswered questions that I had written and sung about long before her appearance in my life. Lucy continued to be my channel of Divine Grace. And thus, I continued to live, and now, I embrace the honour of a profound Grief, the other side of Lucy’s perfect Love. A grief that did not break me, but instead is holding me up and leading me gently onward, even in the midst of my yearning to be with her again. I now see life and death from a different perspective, it is as if I have entered a whole new paradigm of existence where there is no longer a clear demarcation between the two.
A thought piece for Autism Month, reposted from Scheherazade’s Sea’s site, original title “Travelogue 4 – Gratitude”.
Thanking the grass. I have begun this new habit, exulting in an enhanced awareness, a practice for which I want to thank Salzburg Global, because this genteel ‘revelation’ emerged from my week long experience immersed in the beauty of the Schloss Leopoldskron, while attending their exciting programme, “Creating Futures: Art of Narrative”.
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.
Scheherazade’s Sea 2021 was yet another groundbreaking work, at least in my country: led by a disabled artist, featuring other disabled artists, with excellent disability support professionals, and Singapore’s most experienced director in the arts and disability sector. It was a bumpy ride, to say the least. But I am ever grateful to our team for their dedication to my mission, their strength and verve, and especially to my closest ally, Director Peter Sau for his unwavering loyalty, even when things were rough and uncertain. The greatest practical challenge I faced in this project was honouring my own ethics of practising true inclusion the way I feel it ought to be practised. The grant I was awarded was a small mainstream grant, for an experimental work-in-progress, but with no additional allowance for disability support. Therefore, if I wished to provide any disability support to my cast at all, the expenses would have to be gouged out from elsewhere in the budget. I refused to ask my cast to pay out of pocket for anything as far as I could help it, unlike how other projects claiming “inclusivity” make their PWD participants contribute their time, effort and energies in exchange for “exposure” and nothing more, and so the money came from my own artist’s fee, as well as all other technical editing work. The project stretched across a year. That meant that I had to find other means to support myself. It also demanded that I single-handedly record, edit, create all the special effects, captioning, labelling, video editing and rendering etc. I had never attempted this level of technical work before, and so, completely untrained, I had to learn everything from scratch. I also had to procure a faster computer in order to do the rotoscoping effectively. There was no budget for this kind of equipment. I was working 18 hour days in the final stages of the production, despite a fragile physical condition. My medical bills hit the roof, just so I could stay alive, awake and still functioning, in order to complete the work. I owe my survival to Lucy’s constant companionship, and the strength and inspiration to keep going that she brought to the darkest nights and most frustrating moments of failure during this amazing learning adventure. Rotoscoping was the most difficult technique, which I still could not quite master, and that is quite evident in the outcome. But I remind myself that it was a monumental feat to be proud of anyway, and this was meant to be an experimental work, not a polished, slick piece of videography. This experience highlighted the lack of recognition in our arts sector for the needs of artists with disabilities. A complete disregard, in fact. But I have no regrets whatsoever, the journey in itself was worth all the excruciating pain, because of Lucy who was by my side throughout, and the wonderful humans who walked side by side all the way with me, without complaining, never losing faith and trust in me.
(Watch full video on Youtube if it cannot be played here – 31minutes)
Scheherazade’s Sea: continuing journey, 2021, was a year-long project. There were many “firsts”. 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 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 decided to now use Scheherazade’s Sea 2021 to provide practical spaces for other disabled artists in Singapore, open up mentorship and learning experiences they may not otherwise have access to without the benefit of an overseas education (which I had the privilege of enjoying). Beyond the narrative and multi-dimensional aspects of the work itself, my intentions were for this work to be a true-to-live rigorous yet safe space for professional training and experience for the cast, wherever they may be along their own paths. I could only do this, of course, with continued support from my faithful friends, my younger sister Althea, and my confrèrePeter 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.
A note on why I continue to make this work freely accessible to all on Youtube, despite having been told to keep it 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 here:
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 even more widely publicly available.
If you’d like to read my opening speech at the online premiere, please click on this link.
Video excerpts below, if you’d rather watch small, key segments instead of the long full version.
I love the quietude of what people are calling “self-isolation” and “distancing”. I am one of those autists who delight in inhabiting my own little bubble of presence. Yet, I am unable to quell the force majeure of interconnectivity, and what my mind intuits and decodes is quietly shattering the gentleness of solitude.
My Autistic Brain, yes, blame that brain. All those little details, patterns, rhythmic sequences unfolding, unpacking and evolving. The minuscule bits and bobs that reach out with mournful tendrils, grasp, touch and intertwine across a massive expansive network of misery, fear, anxiety and pain. The final few seconds of gasping, life slipping away, the excruciating knowing. The gnashing and grinding of teeth as vicious evil commodifies lives, directing the theatrical tragedy from their self-established positions in the stratosphere, while commonplace humanity groans. Every little ornament – dust particles of affliction, microscopic droplets of misery – screams in shattering silence. The turmoil is palpable, overwhelming and crushing – all the frantically gyrating, jostling dots are concatenated in dolorous bitter chains.
It isn’t only sensory inundation that leads to meltdown. It’s also cognitive deluge that threatens shutdown.
“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!
Autism and me: a lifelong quest for Beingness and clemency of Being.
Guest lecture, 27 August 2015, School of Education, UNSW, Australia.
Thank you, Dr. Iva Strnadova, for inviting me to deliver this guest lecture since 2012. It has become an annual event I look forward to greatly.
I promised Iva I’ll tell as many personal stories as possible within the time limit, and so I shall. But before I launch into the dramatics, I’d like to begin with some basic terminology.
When I first began on my research journey, I adopted the prevalent deficits-focused, pathological perspectives and terminologies, because that was all I knew at the time. However, I henceforth prefer to use the term “Autism Spectrum Condition” instead of “disorder,” because this better describes the neurological culture that autism actually is. I also no longer use functioning labels – “high” or “low” functioning – as they are not only insulting to autistic persons, but more importantly they are based on a system of measurements that does not properly respect the innate autistic functional modalities and paradigms.
My Ph.D dissertation, tentatively entitled, Scheherazade’s Sea – autistic parallel embodiment and elemental empathy, is part of a protracted journey in search for Being: a detailed study of Self and Other, and examination of multidimensional interstices of dynamic, interactive reciprocities.
This research and practice rests upon three fundamental concepts:
Parallel Embodiment,
Endeavour of Empathy, and
Space of Mind, from which emanates Elemental Empathy.
The theoretical foundation for this work is constructed from documented studies in neuroscience, anthropology, the arts and humanities, and personal anecdotal evidence from autistic individuals. At the same time, my artistic practice acts as concretising agency by creating experimental ‘sharable’ spaces that serve not merely to display autism but to invite dynamic, personified communion; connecting individuals across neuro-functional divides. Continue reading →
Dawn-joy Leong 