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 Very Special Arts Singapore 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.
After a year of hard work, we have finally launched our new charity! K9 Assistance (Ltd) Singapore is Singapore’s first and only charity organisation focusing on assistance dogs for the disabled. We are committed to educate, create better understanding, awareness and acceptance, as well as eventually match assistance dogs with disabled people.
In this video, I announced Lucy’s retirement from active duty as my assistance dog. She will continue to share her special joy as K9 Assistance’s Ambassadog!
Sonia has an amazing way with words. It doesn’t need to be a lengthy piece, in fact, her words are so lithe and fluid, yet exquisitely penetrating and precise, that I am left catching my breath at the sharp, deft unlocking of a wealth of unspoken, unworded meaning. And, in an uncanny way, each and every time I am incapable of bringing into the tangible realm what I wish to express, somehow, Sonia’s words will give strong yet delicate voice to the rhythmic humming resonating in my being.
“How rare it is to see people with complex needs just being. Humming is natural, and nothing is dressed-up; this isn’t ‘special needs’ for consumption. There’s no attempt to exoticise or glamorise our being. The camera captures ordinary moments valuing autistic language and expression on our terms.”
This is exactly what first hit me right there at my core, when I first watched the film. It unpacks our meanings, our world, on our terms.
Actually, I watched it three times, each time catching different details and sensory echoes. In fact, I’ve also run it over and over again in the background, allowing different aspects of it to weave in and out of my consciousness, meandering and winding around caverns of sensory subconscious as I engage in different light tasks. I love the clattering sounds, the staccato, the ripples, the appoggiatura and trills, the sudden drop in levels, the pitter patter of rain like crisps dancing inside a foil coated box…
And then, Sonia says this:
“It suddenly strikes me that this film feels like home to me because this is where I began. There’s a circularity in writing this piece for Project Art Works, which underlines its immense importance as an artwork. As a young art therapist, I was employed in a residential setting for adults with complex needs; not knowing that I was myself autistic until very many years later. Since then, I’ve come to recognise aspects of myself in those with more complex needs than my own, but as a younger person I had no way of understanding why I was so drawn to this world. Years of my life have been wasted and lost.”
Wasted and lost! Wasted AND lost! WASTED and lost! Wasted and LOST! These words sound like bells, whose echoes and reverberations fill my chest cavity, pounding against my rib cage. I think of the bells inside Magdelen College Tower on the first of May.
Everything is there, embedded in Sonia’s three words. This world that is so simply presented in the film, a realm so full, so abundant with wonderment.
When I first read Searle’s review, pronouncing it “problematic” without any further explanation, a searing hot rage shot through my core. I was shaking with fury, yet hurt, it brought back horrific wound trauma, I know that kind of dismissal too well, flicking away the rich tapestry of my multi-textured world like crumbs off a table, that neuronormative gesture of disdain so ponderous, so callous, so crude in its garish ignorance.
But then, after the film had played umpteen times like a comforting echo in my senses, I now feel sad. Sad for Searle and those like him, who are unable to access and luxuriate in our world, who stand outside and sweep at crumbs on neuronormative cafe tables, never noticing the flow, the undulating rhythm, the shuddering patterns, and the tiny clicking, chirping sounds the specks make as they fall, fall, fall to the groaning, giggling ground. A tragedy, to me, not to be able to resonate with the richness that is our multidimensional universe. This is the true loss. Yet, do they know of this loss?
Sonia’s words again, in her other article responding to Searle’s review:
“This film speaks to me in my language. This is mysensory world. For me, Illuminating the Wilderness is a rare and beautiful thing, and I feel sorry for those who can’t see it. Our immersive connection to the sensory world can feel vast and expansive – it is beyond words. This is supremely exciting to us, and joyfully fulfilling. It’s why we don’t need to people so much – we have this!”
Yes, we do indeed, and what a wonderful world it is!
Today is International Day of Persons with Disabilities.
Lucy and I spent the afternoon at Eden Hall with the British High Commissioner Ms Kara Owen CVO, and British Council’s Director of Arts and Creative Industries, Dr Sarah Meisch Lionetto, and theatre maestro and close collaborator Peter Sau.
Lucy Like-a-Charm was there too, in one of her last public work engagements as my assistance dog.
Dear Friends, here is my most recent work. A fully digitalised re-arrangement of the original Scheherazade’s Sea, 2010.
Welcome to “Scheherazade’s Sea: stories and songs from a hidden world.”
In the next twenty minutes or so, through video, stories, poetry and songs, you will see, hear and experience tiny reflections from my Autistic world.
The title is inspired by Scheherazade in the ‘Arabian Nights’ folk tales, whose stories to the wicked Sultan helped her survive and saved her life.
My Scheherazade is an Autistic girl, journeying alone through an unkind world, where she encounters confusing twists and turns of lies, betrayal and disappointment. When at last, she begins to embrace and love her unique Autistic self with courage and determination, Scheherazade discovers that her Autistic world, Scheherazade’s Sea, while misunderstood by others, is actually a beautiful one, full of wonderment and hope, a deep and wide ocean alive with infinite possibilities. It is then, that she finds strength within to continue along her journey, bravely embracing her unique Autistic Joy.
“Scheherazade’s Sea: stories and songs from a hidden world” is fully digitalised and revised from its original version, which was performed in Hong Kong in 2010, and The World Stage Design Festival in Cardiff, U.K. in 2013.
Sound engineering by Karen Low (Singapore) Portrait of Scheherazade by Kateryna Fury (USA) Little Duckling narrated by Sumita Majumdar (UK)
Supported by the National Arts Council Singapore & SG Culture Anywhere.
Launched yesterday, “Clement Space @Suwon, 2020” and “An Olfactory Map of Sydney, 2017” is part of a show at the Suwon Art Museum, South Korea. (00:40 – 01:00)
Thank you to Jinseon and everyone in the team who sought me out and connected with me, I’ve had a wonderful working experience with you. Everyone is so kind and polite, a lot for me to learn!
Here is the Korean write up, for those who know the language:
#그것은_무엇을_밝히나#전시#개막 . 수원시립미술관은 아트스페이스 광교에서 9월 22일(화)부터 12월 27일(일)까지 기획전 ≪그것은 무엇을 밝히나≫를 개최합니다. . 이번 전시는 이 세상을 밝히는 근본적인 요소인 ‘빛’에 관한 이야기입니다. . 전시 제목에서 알 수 있듯, 빛을 의미하는 ‘그것은’ 시간의 흐름에 따라 시대와 사회가 공유하는 ‘무엇을’ 어떤 시각과 입장으로 어떻게 ‘밝히나’의 이야기를 담고 있습니다. . ‘1부 : 시공간을 확장하는 빛’에서는 ‘빛’과 시간 공간이 결합하여 나오는 여러 가지 경험들에 관한 탐구와 관점을, . ‘2부 : 사유의 매개로서 빛’에서는 빛에 대한 우리의 시선을 가시적인 세계 너머로 이끌며, . ‘3부 : 공동체 메시지를 전하는 빛’에서는 각각의 고민을 통하여 개인적 상징인 작은 불빛을 이용해 사회적인 현실을 담아냈습니다. . 각 섹션을 통하여 7개국 10명의 작가들이 제안하는 다층적인 빛을 아트스페이스 광교에서 만나볼 수 있습니다. . 현재 수원시립미술관은 현재 수도권 지역 사회적 거리두기 2단계 조치로 코로나19 확산 예방 및 관람객 안전을 위해 상황 진정 시까지 휴관 중이니 온라인으로 ≪그것은 무엇을 밝히나≫ 전시를 만나보세요. .
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.
Reblogged from bunnyhopscotch. Take note, those folks who want to contact me to do work, some basic fundamental professional decency is required. Do not bother if you are not prepared to uphold fairness, justice, equity and respect for persons with disability. Thank you.
I read Sara Luterman’s review of the new HBO series, The Outsider, with interest. The whole kerfuffle over Autistic (mis)representation in the media – from documentary to fantasy – has been stirring and swirling and churning and heaving and whatnot else in that great cauldron perched precariously atop a spitting fire of contention for sometime […]
The artistic sphere is nowadays abuzz with terms like “access” and “inclusion”, with all and sundry jumping into the scene laying claim to these trendy words, but how many actually understand what they mean in practice, I wonder? No, I am not talking about the fluffy feel-good pulling-at-heartstrings stuff, or the tired and worn circus-style acts that purport to ‘include’ the disabled but are actually poorly contrived, inexpert displays of awkward disability tokenism. I am looking for concrete, meaningful and practical facilitation of access, and an inclusion that allows persons with disabilities to function from out of their individual optimal realm. Every person has the latter, regardless of what it actually is in shape, size, colour or form, we all each have our own little space, a Clement Space, in which we feel safe and from which we are allowed to emerge wholly ourselves, not broken or wanting to be fixed.
A working trip to the United Kingdom at the end of 2019 perfectly illustrated for me in real-time the essence of true, respectful, creative, meticulous and effective support – that is, dynamic access and inclusion in action.
A term coined by me in my PhD dissertation, “Clement Space” denotes a mental and physical ‘space’ for sensory equilibrium, an oasis in the midst of raging, parched desert sands. Like empathy, Clement Space is not some beauteous space that comes from a wave of the magician’s wand. It needs to be designed, crafted and maintained. Calm and serenity actually require a great deal of active energy in order to create and achieve. It also needs guarding against antagonistic elements from within and without, i.e. from inside our own tempests as well as from people (other) who may encroach upon our carefully built peace, whether intentionally or not. Unlike teacakes on a platter in a fancy restaurant, Clement Space isn’t at all about waiting passively for others to provide, but an action – sometimes even quite vigorous – towards that much-needed state of rest and restoration.