Autistic Thriving @ TEDx

This is the complete unedited script of my TEDx speech, delivered today amidst a flurry of technical failures and farcical-comedic twists. (Read about it here.)

AUTISTIC THRIVING
Dawn-joy Leong
4 August 2018
TEDx Pickering Street
Singapore

~

I dance,
Because
I cannot walk,
The ground,
It is too strange.
I must count:
One, two,
One, two, three!

Autistic people are given many different labels by the non-autistic world. One of them is ‘clumsy,’ and by that measure, I suppose I am – it is a conscious effort for me to walk in a straight line, navigate bumpy surfaces, and stroll and chat at the same time. Yet, how does ‘clumsiness’ explain the ability to dance? When there is music, my body becomes freed from the tyranny of the walk, and the ground doesn’t seem so daunting anymore.

Another description that autistic people cringe at is that we “suffer from Autism”. Autistics do not suffer from Autism, but we do suffer from social stigma, patronizing condescension, discrimination and ignorant misrepresentation.

What is autism?

Simply put, Autism is a difference in neurological function: it is the way our brains work that is not the same as the norm. The medical model of Autism, created by non-autistic observers, paints Autism as a bleak and barren existence devoid of empathy, lacking in social reciprocity, and mired in rigid, meaningless repetition. In truth, the autistic’s world is a rich, thriving ecology of multisensory experiences and insights, amidst juxtapositions of acute challenges, unusual abilities and everything else in between.

‘Autism Awareness’ has become somewhat of a trendy topic these days, with all kinds of events created in the name of Autism, mostly by non-autistic persons. What exactly are you being made ‘aware’ of? And where are the Actually Autistic voices in this grand cacophony of opinions and interpretations?

Here’s the reality: Autistic people live in a world designed by the normative, where non-autistic persons armed with only the medical model claim expertise, despite little or no understanding of lived-experience; while Actual Autistics – even highly qualified professionals – struggle to have their voices heard on a platform that is about us and belongs to us.

In 2017, I stumbled upon a top university’s School of Medicine Autism Research webpage. To my horror, I saw the word “disease” used to describe autism. This is not only outdated and inaccurate, it is utterly insulting to autistic people. I sent them two emails, which were ignored. But when a non-autistic colleague wrote to them, the offensive word magically disappeared! This is the socio-political climate in which autistic persons are forced to live.

A major paradigm change is urgently needed!

How can autistic persons across the spectrum grow and thrive, not despite autism, but because of the unique features? And what can society learn from autistic people?

Accept, Respect and Embrace

It is time to move beyond mere awareness of autism as uncomfortable anomaly, into accepting and embracing Autism as a natural variation in human neurodiversity. There needs to be equity and respect. Just like everyone else, autistic people come from all walks of life, with a wide range of interests, hopes, dreams, abilities and struggles. Every individual has a narrative, a story to tell. Listen to us, especially on matters concerning us.

Advocate

DPA

I am a Board Member of the Disabled People’s Association Singapore, a disability advocacy organisation that believes in the statement, “Nothing About Us Without Us.” At the DPA, training is provided to members who wish to learn how to engage in advocacy and develop leadership potential.

Advocating on behalf of autistic people is wonderful, but not enough. We must also advocate for ourselves. With or without words, we can all advocate! Even very young children can learn how to do this, and you will be surprised to find how powerfully we can contribute, not only to the autism discourse but also ultimately to wider social inclusion.

Discover & Empathise

Have you ever made the effort to find out why we do the things that seem so strange to you?

Why do some of us find it painful to look you in the eye? Does it make you uncomfortable when we flap our hands, spin around, or fidget? Did you know that this can be calming for our nervous energy and anxiety, or even ways to express various emotions like love, joy, excitement and distress?

Why do some autistics seem to connect so much better with animals than with other humans?

This is Lucy Like-a-Charm, trained to mitigate my sensory anxiety – we belong to the organisation ‘mindDog Australia’. Rescued from the cruel Greyhound racing industry, Lucy is my creative muse and closest companion. We’ve had many amazing adventures, one highlight was returning to Singapore from Sydney together in the cabin of a Qantas flight.

To me, Lucy is not a substitute cute human; instead, I cherish her canine embodiment as different from my human one, and it is this very difference that unites us inside our shared space in time. Lucy has taught me to honour my natural autistic ways and pay heed to my intrinsic needs. In my PhD dissertation, I coined the term “Clement Space” inspired by Lucy’s gentle, wordless example: she has shown me the importance of finding and creating pockets of calm and restoration wherever I go, thus reclaiming sensory equilibrium and strength to journey onwards without burning out or melting down.

Perhaps, the reason so many autistics prefer animals is this empathic connection and appreciation of difference, rather than insistence on bland uniformity. Ironically, instead of being empathy-impaired, autistics and their animals can teach the world a great deal about empathy, if you care to learn.

Ability and disability

Some autistics may find it hard to do daily tasks, like tying shoelaces, or are unable to communicate in a language that you can comprehend. This does not mean that we have no intellect, it does not mean that we do not hear or understand what you are saying. There is a real human inside each and every one of us. Please, do not talk over us as if we are not there. Acknowledge us. Presume Competence! It is not hard to do.

Our autistic world is so full that we may react to things you do not notice at all. We are not ‘smiling at nothing’, we are not ‘crying for nothing’, and we are not engrossed in vacuous monotony.
Have you ever considered that the people you call “low functioning” are actually engaging with a reality that is far more complex and magnificent than yours?

Welcome to My World

I am Autistic. This is my brain. This is my body. This is my life journey. I have spoken thus far about ways in which you, the normative, can help autistic people to grow and thrive. The favour is not merely one-way: when we flourish, so will you.

Now, let me invite you to step into my domain, and share with you how you may thrive, inspired by natural autistic ways of appreciating the world.

Inside a Clement Space of my own, where there is sensory peace, there is amazement and delight. Things that are intrusive and assaultive when experienced in normative contexts – sounds, images, textures, vibrations, tastes, smells – can also fill me with wonder, when I connect freely with them on my own terms, inside my Space of Mind.

Think through the body – whatever body you may possess. Sense, and therefore, exist. Sense your senses, and in sensing your senses, allow your senses to sense your Self, and everything around you.

I invite you to intuit my reality, by magnifying your own.

To the non-autistic, it may seem that the autistic person lives in an empty vacuum, but in fact, it is a busy vortex of intimate mind-body conversations with the material universe.

Communicate with and through the elements that continuously impact the senses. The smallest, most insignificant things can fire vivid imagination. Be enthralled by minute differences and evolutions in patterns and structures.

Become truly aware of every vibration, from the miniscule to the colossal, even the reverberations and echoes that you yourself create. Begin with the most basic, tiny organism. Remember. Imprint. Expand. Then reach outward, sensing the process, connecting one thread at a time. Again: remember, imprint, and expand.

Notice how independent entities merge slowly, patiently, precisely; and enjoy the intricate patterns they make as they greet, touch and intertwine, until a larger and larger dynamic form is constructed. This is not ‘meaningless repetition’, it is enchanting organic development.

If you approach the luscious fabric of creativity in this manner, from the inside out, you will not be confounded, despite the apparent chaos, because your understanding shall be sensed throughout your Being, without need for meandering postulation.

Imagine a world in which different kinds of minds come together to share unique strengths and inspiration. Imagine safer, inclusive communities where each individual is a dynamic part of a whole, and the whole embraces the individual. Imagine a Neurocosmopolitan culture of empathic vibrancy.

It is not my purpose to ‘fix’ what is ‘broken’, but to empower beauty in the vulnerable and unnoticed.

Dancing with my shadows
Whispering, “Good Night”
Humming silent wishes
Smiling deep inside

Dancing with my shadows
Jarful of moonbeams
Come, lay down beside me
Wake up in my dreams!

Advertisements

Reluctant Advocate

I am not an “Autism Activist” – far from it – so, please do not call me that. Thank you. I do support the work of activists, it is a necessary force when things are woefully wrong and a great deal of vim and vigour is needed to create change for the better. It is just that my natural constitution does not fit well with the vivacity required for effective activism. Sometimes, though, I do engage in advocacy. Well, all right, quite often especially of late, but this is not what I deliberately set out to do. I am, first and foremost, an autistic researcher and multi-artist. Unpacking this further, my research interests include (but are not confined to) autism, autistic sensory idiosyncrasies, alternative and elemental empathic resonance, clement spaces of mind and body, and my material practice reflects this research, employing multiple artistic disciplines. I love my research and multi-art practice, and I adore my beloved Lucy Like-a-Charm, the two represent mental, emotional and physical wellbeing and equilibrium to me.

Lately, however, I find myself forced to neglect both my research and practice and my beloved muse Lucy, and grappling uncomfortably – eye-ball to eye-ball –  with a vehement and hearty form of vocal advocacy that stops just short of activism. Arts and Disability and Disability Arts are becoming prominent topics of discussion, development, exhibition and exploitation. At the same time, ‘Autism Awareness’ and all kinds of autism-focused activity have mushroomed seemingly from out of nowhere, permeating now the terrestrial spheres in various forms – public forums, fundraising events, educational workshops, with the mainstream and social media all abuzz. A recent article in a mainstream newspaper here in Singapore even used the term “neurodivergent”, which should have been a cause for celebration (as an indication of progress), but that initial susurrus of elation fizzled out quickly and landed flat on the floor with an unhappy squidgy ‘plop’ when I realised that the word was being employed according to Simon Baron-Cohen’s definition proposed in his article, Editorial Perspective: Neurodiversity a revolutionary concept for autism and psychiatry.” In this editorial, Baron-Cohen limited its application to those autistics deemed “high functioning” by the medical-pathological model, thereby excluding the entire population of non-speaking autistics that are relegated to the “low functioning” part of the ‘autism spectrum’. Autistic author, Maxfield Sparrow, has written an excellent critique of Baron-Cohen’s misrepresentation of the Neurodiversity Paradigm here: “Dr. Simon Baron-Cohen does not understand the neurodiversity paradigm.”

Not only are we still mired in the sludgy, viscid pulp of the traditional medical model of autism and locked in the vice-like grip of the charity model of disability arts practice, but emerging progressive models initiated by actual autistic advocates, researchers and scholars are now being purloined and reworked to fit the non-disabled / neuronormative colonial authority’s autocratic perspectives.

The Artist is not a solitary figure of eccentricity working completely cut-off and removed from all that is happening in the grand cosmic swirl of human frothing. Not this artist, anyway. Yes, I do understand that in one way or other, the disabled artist is inevitably connected to the fabric of disability advocacy, whether they wish to be or not (unless they refuse to identify as disabled and manage to hide the fact effectively). It becomes extremely difficult to practice art without acknowledging or being affected by an environment that is literally audibly buzzing with outdated ableist concepts, adulterated ideas touted as ‘new’ or ‘progressive’, a cacophony stolidly dominated by non-disabled / non-autistic colonialists who seem increasingly uncomfortable with the emerging alternative chorus of disabled  / autistic voices calling for “Disabled Leadership.”

Research and Art – this is what I am passionate about and what I want to engage in, and the medium of choice for my expressions to be embedded in or flow through. Yet, it seems to me, at this moment at least, that vociferous disability / autism advocacy is something I must do, in order to be free to be the Artist-Researcher that I am.

Nothing About Us Without Us – the message is rising in a polyphonic crescendo. However, when push comes to shove, will there be enough Actually Disabled / Actually Autistic leaders to step up and into the demanding lead roles when the colonialists finally loosen their tight grip over the libretto? And will there be inspired, energetic and spirited Disabled / Autistic Artists left, after the exhaustion of advocacy, to take centre stage?

Disabled People Have an Ally Problem: They Need to Stop Talking For Us

Important points very clearly put forth. Disabled Leadership can and must happen, but first, the ground needs to be laid. And this article lays it down very well. Read and learn!

Crutches & Spice

My mom and I were in the store when it happened. It wasn’t the first time and it wouldn’t be the last, unfortunately. It was a common occurrence, “par for the course” as they say. An acquaintance of my mother (my mom’s real friends know better) had walked over to us and started a conversation with us. Just normal things until she switched the conversation to kids, she looked and my mother and asked “what subject does she like most in school?” Despite standing right beside my mother, despite having been introduced to me by my mother, despite the fact I had nodded quite attentively to what she had yammered on about, she decided to ignore my presence and address the question to my mother. For most abled people, this may seem like a momentary slip up in decorum, but for disabled people this is all to familiar: proximity to…

View original post 570 more words

bloviation & the sacrificial lamb

My recent casual blog post, musing on Arts and Disability, and the devastating effects of non-disabled colonisation of the disability conversation, theory and practice in any field, with a focus on the arts, simply because this is my field of research and praxis.

“Perhaps it is time to take the entire conversation back and situate it on our own platform – the Actually Autistic / Actually Disabled stage. One that we choose for ourselves, not that which is designed and built by the non-disabled colonising forces. One in which there is no prerequisite social-political posturing of ambiguous, veiled or hushed up mumblings, no copious mists of gas lighting, and no contemptuous slime of condescension. Just honest truth and a light shining onto a path ahead clear of the debris of gurgling bloviation. Is this even a possibility, I wonder?”

bunnyhopscotch

20180512-bunnyhopscotch-bloviation bloviating babble bubbles

I learned this new word from my friend Rick. I like it. It has a robust movement to its physical form, flow and force. It sounds and feels like thick copious slimy globules arising from a pit of bubbling sludge. This word has a sensorial constitution that matches its meaning. Thank you, Rick!

“Bloviation” – such a proliferate and aggressively dominating activity in the field of Autism and Neurodiversity. Autism is a trendy topic these days, isn’t it? Everyone – from the housewife ‘AutismMom’ to the Professor in Psychiatry, and the outright quacks touting ‘cures’ and ‘healing touches’ mushrooming like unbridled viruses in between – seems to be dancing vigorously around the jolly campfire of Autism.The word makes me think of the many (I have lost count now, it is a long and wearying list) instances of having to silently endure protracted lectures, workshops, conversations, discussions, seminars…

View original post 557 more words

Upcoming Lectures – Hong Kong Feb/March 2018

I shall be in Hong Kong next week and a half delivering two public lectures. Friends in Hong Kong, please do drop by!

1. EMBRACING NEURODIVERSITY

Embracing-Neurodiversity_poster1

Embracing Neurodiversity: sharing empathy through multi-sensory immersive art.
Venue: University of Hong Kong, Room 4.34, Run Run Shaw Tower, Centennial Campus.
Date and time: 28 February 2018, 4-5.30pm
Language: English
Contact: Ms. Zhang Xuehong – xuehong@hku.hk

Abstract:

Empathy is a complex concept: an abstract phenomenon that can be felt, but remains invisible and unknown to others unless properly conveyed. Each human culture has different ways of expressing and showing empathy. Nonetheless, empathy is an important part of human interaction and a key component to forming congenial relationships.
According to the neuronormative-designed pathological description, the autistic person is a social misfit without ability to form meaningful connections, in a barren mindscape devoid of empathy and creative imagination. In reality, the autistic realm is a rich and vibrant sensorial ecology teeming with detail, observations of minutiae, and dynamic energy; and autistic persons possess a different kind of empathy, an alternative connectivity that is no less meaningful than that of the social normative majority.

Autism has been scrutinized and defined by the neuronormative for almost a century, yet the normative realm has failed dismally to understand the autistic existence. Perhaps it is now time for the autistic world to show the way forward, with multi-art practice as agency, towards deeper empathic resonance across neuro-cultural divides.

2. AUTISM & ART

V1-20180302-Poster

 

Autism and Art

Another talk I will be delivering in Hong Kong, this one is at the Education University. The poster is in Chinese, as the audience in this one will be mainly Cantonese speaking. My lecture is in English with simultaneous Cantonese translation. There will be a show by autistic sand-artist, Sai-Ho Lee to open the session, and a Q&A at the end.

Topic: Autism and Art.
Venue: Education University of Hong Kong, Lecture Room 105
Date and time: 2 March 2018, 2-5pm
Language: English with Cantonese translation
Contact: csenie@eduhk.hk

Abstract:
For many autistic persons, life within the context of the wider social world is a difficult journey full of stigmatization and misunderstanding. How may artistic research and practice help to bridge the divide between neurotypical and autistic realms, to forge real and lasting empathic connectivity between?
對於許多自閉人士來說,活在這個社會猶如踏上一條充滿負面標籤和被誤解的艱難旅程。講者透過藝術研究和實踐,探索如何跨越非自閉和自閉特色世界族群的鴻溝,形成真正持久和具同理心的連系。

revisiting LaLaLouBelle

Musing on ‘making’ and the actioning of restoration.

bunnyhopscotch

100T2351-lalaloubelle-lucy-blue-porcelain

‘Making’, the act and action, is like a gently flowing stream of consciousness, a knowing of wellbeing. I breathe more calmly and at the same time there is a delightful sense of excitement like an aura wrapping around me.

I’ve been revisiting my jewellery hobby, after near complete brain shutdown the other day from frenetic writing and overworking the thinking machine. I needed that elemental connection with material and matter. And, as always, Lucy was a cooperative model.

Just uploaded more photos in LaLaLouBelle! Check them out if you’re interested in handmade jewellery for humans and furries.

View original post

Space of Mind – Interview

An-Olfactory-Map-of-Sydney_thumbnail-01

I was interviewed by Chloe Watson in this new magazine, Runway – Australian Experimental Art. Thank you, Chloe!

Space of Mind: An Interview with Dawn-joy Leong

“For autistic artist-researcher Dawn-Joy Leong, spaces are vividly coloured by scent, sound, sight and touch — sometimes overwhelming, even disgusting, at other times relaxing, harmonious, or gloriously amplified. Leong explores her heightened sensory experiences of the world through her art and writing, encouraging her audiences to engage with their own sensoriums, at the same time opening up avenues of empathy and communication between ‘neurodiverse’ and ‘neurotypical’”