Thoughts on Disability-Led Practice

Here are the speakers notes for my presentation yesterday (11 Aug 2018) at our disability-led forum on Disability-Led Practice, a groundbreaking first in Singapore. I’ve also added more detailed links to videos in this post.


DAWNJOY DisabilityLedPractice 20180811.001

Description of photo in first slide: Dawn is wearing black sleeveless turtle-neck top, bright red coral bead necklace, metallic green crinkled satin long skirt, thick colourfully beaded belt with small coins dangling from the edge, a colourful fabric ‘treat pouch’ containing Lucy’s treats is slung across with a red leather strap. Lucy – a black Greyhound – is at her feet lying in a ‘Sphinx’-like position, on a beige sheepskin rug, wearing a blue and gold brocade collar with red silk tassels, and a yellow and blue rimmed jacket with sewn on patches that say “Assistance Dog” and “mindDog”.  Behind them are large red letters, “TED X”, and to Dawn’s right there is a black music stand.

Thank you for staying with us throughout the afternoon. I hope you have enjoyed the session and benefitted from the sharing.

For those who have not met me, my name is Dawn-joy Leong. I am autistic, and I use identity-first language – “autistic person” and not “person with autism”. I am also a musician and artist.

After hearing the various narratives and insights from Victor, Alvan, LeeLee and Cassandra, and having been re-invigorated by the tea-time spread, I’d like to now pose a question to ponder:

How do you think about Disability?  What language do you use to describe your thoughts, spoken or unspoken?

DAWNJOY DisabilityLedPractice 20180811.002

Now hold those thoughts while I ask the next question:

Which space does your thinking fall into, where it comes to the notion of Disability Leadership in Practice?

When I talk about “Disability Leadership” or “Disability Led Practice” here in Singapore, many people in the disability sector become very uncomfortable. Perhaps they think that Disabled People will begin to take over and leave them out of job?

Clarification is necessary.

DAWNJOY DisabilityLedPractice 20180811.003.jpeg

Disability Leadership means that there are Disabled People in leadership roles where the narrative of lived-experience is necessary for better-informed practice.

Disability-Led practice means that Disability Paradigms are the driving force of practice.

At this point, I’d like to share my own disability-led professional practice, to illustrate that Disability-Led Practice is not merely a fanciful ideal but a powerful and dynamic force.

DAWNJOY DisabilityLedPractice 20180811.004

I have worked in various scenarios, including large-scale festivals, collaborations and solo exhibitions.

In 2013, I was invited to perform my work, Scheherazade’s Sea, at the World Stage Design Festival in Cardiff, UK.

In 2017, I was commissioned to deliver two installations at another large-scale festival, this time in Sydney, Australia.

The central theme of the BIG Anxiety Festival is anxiety, as experienced and expressed from the viewpoints of different disabilities.

DAWNJOY DisabilityLedPractice 20180811.006

“Clement Space” is a term I coined in my PhD dissertation, inspired by my beloved assistance dog and creative muse, Lucy. She showed me the importance of finding and creating pockets of calm and restoration wherever I go, and in this way, reclaim sensory equilibrium so that I may venture forth without burning out or melting down.

Description: There are four photographs in this slide: the first photo shows a cosy corner furnished with a large padded mat, a fluffy cushion, and tactile stuffed fabric balls, all in muted hues of white. In the second photo, I am sitting in the cosy corner, leaning back against the wall, shaded by a netted curtain with pompoms attached. Next to me, a lady in white top and floral skirt is lying down on a large cushion, inside a small tent constructed with netting fabric. The third photo is a resting spot by a large window, sunlight streaming in. There is a thin mattress and some fluffy cushions, and netted curtains over the space. The fourth photo shows the tent from the first photo, without anyone inside.)

Another work that was commissioned by the BIG Anxiety was “An Olfactory Map of Sydney”, a three-part video and monologue commenting on the way my hyper-sense of smell impacts my experience of public transport – in this case, 3 different bus routes across distinct localities in the city. The video scenes and soundscape are layered, taken from inside the bus.

(Online readers can access the full video on my YouTube channel: Olfactory Map of Sydney #1)

Disability Led art practice can also be collaborative. “Snoösphere” is an immersive, high-tech interactive sensory space created by Lull Studio, for which I was advisor on sensory dimensions from the viewpoint of autism. We held two workshops – one in Sydney and the other in Singapore – where we gathered feedback and information from autistic participants. The autistic participants offered insights from their autistic sensory experiences that shaped the way the lead artists designed and created Snoösphere. It was very popular3, and we were even interviewed by ABC Australia for a television feature.

Video links:

Snoösphere walk-through

Workshop 1

Workshop 2

Workshop 3 (in Singapore)

Participant Response (English) – featuring Theodore Eu and Timothy Ng

Participant Response (Mandarin) – featuring Timothy Ng

Description of Snoösphere space: Softly glow pink and blue sculptures that look like icebergs greet the visitor at the entrance. Lighting is dim throughout the entire space. There are soft pink, purple and blue lights emanating from the different installations, just enough light to allow visitors to navigate through the space and interact with the elements in the space. Visitors can rest or even fall asleep on scented beanbags under the large puffy clouds of muted fuchsia and blue, stroke the furry shivery ‘creature’ installation which regularly ‘refreshes’ itself via a metal ‘tail’, walk on the platform that responds with light and sound, step into an over hanging ‘chocolate wrapper’ and be engulfed in the delicious aroma of chocolate, walk on a pebbled floor, create tiny ripples in a large round tray of water, touch and feel the fluffy ruffly textures of the components around the magic garden, be mesmerised by the glowing ‘mushrooms’ and ‘foliage’ created from tiny LED-lights, and enjoy a scented foot bath. There is also a cosy little ‘hideaway cave’.

You may, at this point, be thinking: Ok that’s all very well, you’ve turned your disability into an asset, and thus you are not the same as the more ‘severely’ challenged. How can the latter group of people fit into the space of Disability Led Practice?

Indeed, how do we practice Disability Leadership with people who seem more specifically challenged?

A change in paradigm is all you need.

DAWNJOY DisabilityLedPractice 20180811.009.jpeg

  • Presume Competence
  • Respect different embodiments – not all disability is visible or obvious
  • Be humble, learn alongside those with lived-experience
  • Co-create new formats, different ways to communicate and perceive
  • Make way, step aside, allow space & time for alternative communication & eclectic styles
  • Not just ‘accommodations’ but rather discovering and respecting different ways of functioning and expression

Here is a short video in which artists with learning disabilities present their art, each in their own way. These artists belong to a collective in Oxford, UK, called Shadowlight Artists.

Description: Shadowlight Artists show their artwork and talk about their involvement in the collective.

Transcript:

“Happy being a Shadowlight artist. I always have been interested in art.”

“Well, I really like it, it’s really really made me feel proud. Means something to do in my life.”

“I hope to be with Shadowlight Artists for many years to come.”

“Shadowlight is more… is more independent.”

“It’s really interesting, it makes you feel you’ve achieved something that is good, like you put your talents to good use.”

Returning to Singapore after my years overseas, I am suddenly faced with overwhelming hurdles to my research and practice as an autistic professional.

DAWNJOY DisabilityLedPractice 20180811.011

  • Lived-Experience is not valued by Establishment
  • Entrenched Medical / Charity Models
  • Protectionism – the highly qualified Disabled Person viewed as threat to status quo
  • Tokenism / patronising attitudes / glass ceiling / gas lighting
  • A great deal of talk about “inclusion” but little action – is it apathy or ignorance?
  • “About Us Without Us”

Now… What can we do? How can we contribute towards recognition of Disability Leadership in Singapore?

DAWNJOY DisabilityLedPractice 20180811.012

Description of photograph: Lucy – a black Greyhound – is wearing a blue and gold brocade collar with red silk tassels, and a yellow and blue rimmed jacket with sewn on patches that say “Assistance Dog” and “mindDog”. She is standing and looking upwards, her nose pointing at Dawn’s hands, which are holding some treats for Lucy. On the right of the photo, only Dawn’s metallic green crinkled satin long skirt and embroidered belt is visible.

  • Advocate– keep on telling our stories in as many different ways & on as many platforms as possible
  • Innovate– disabled people can initiate leadership, if nobody hands it to us on a platter, well, we will go out there and do it ourselves – just like this event today!
  • Collaborate– with like-minded allies & disability-led organisations like the DPA

In closing, I shall play a video and soundscape that I created from an earlier work in 2010.

Description: the main character in this video is a Goldfish. A mezzo soprano voice vocalises a plaintiff, wordless melodic pattern. The Goldfish is trapped inside its little bubble, it can see out but nobody seems to notice. There are scenes of other Goldfish frolicking in turquoise waters. The world moves by as the little Goldfish swims round and round, sometimes pausing, its mouth opens and closes repeatedly, as if trying to say something. Yet nobody notices. A young child’s voice begins to sing “Rasa Sayang”, as large multi-coloured carp enter the scene. They swim by – back and forth – some coming very close to the Goldfish, but none acknowledge his presence.

Imagine a world where different kinds of minds and bodies come together to share strength and inspiration. Imagine safer, inclusive societies where differences are celebrated. Imagine a Neurocosmopolitan culture of empathic vibrancy across all spectrums of human existence.

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

 

End

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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!

Autistic Thriving

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。

ABA Study

This study is reaching out to people who have gone through ABA (Applied Behaviour Analysis) programmes or similar, to provide actual lived-experience feedback. Open to international participants. Please email Prof Terry Cummings directly.

Please do consider joining. I understand that many of you may have PTSD associated with this and it will be very difficult and even traumatic to re-visit, but it is important that your experiences be made known.

Text from call out below, followed by image of document:

UNSW, Sydney, Australia

Invitation to Participate in Research

Applied Behavioural Analysis: The social validity of an evidence-based practice

Researchers at UNSW Sydney (The University of New South Wales) are seeking volunteer research participants to learn about what people with disabilities think about their current and past experiences with Applied Behaviour Analysis (ABA) and its practices, such as functional behavioural assessment, reward systems, and social skills training.

 

Would the research study be a good fit for me?

The study might be a good fit for you if:

  • You have an intellectual disability, autism, or emotional/behavioural disability.
  • During school or private therapy, you experienced instruction in the area of social skills, communication, or behaviour that was combined with the use of rewards, such as stickers, points, treats, or other prizes for giving correct answers or following the instructions of a teacher or therapist.

 

What would happen if I took part in the research study?

If you decide to take part, you would have the choice of:

Be interviewed for about 30 minutes by a researcher about your experiences, OR

Complete an online survey that will take between 30-60 minutes. You can access the survey here: https://www.surveymonkey.com/r/LNG6Y53

Will I be paid to take part in the research study?

There are no additional costs associated with participation in this research study, however, you will be paid $20 for your time in the form of a gift card.

Who do I contact if I want more information or want to take part in the study?

If you would like more information or are interested in being part of the study, please contact:

Name: Terry Cumming

Email: t.cumming@unsw.edu.au

Phone:(02)9385 1944

This research has been reviewed and approved by the UNSW Human Research Ethics Committee HC reference number HC180231

Cumming_etal_advertisement_clean

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.

An incident occurred prior to the show has left me chewing on the tangled cud of emotional-sensorial-mental discombobulation mixed with shock, sadness and other slivers of unidentifiable, nebulous discomfitures. As a result, I entered the physical confines of the theatre in a bizarre state: sharp, heightened vigilance juxtaposed against torpefied somnambulism. My body felt like it had turned into a quivering blubbery mucilaginous mass, muscles twitching involuntarily like small invisible electrical circuits going awry, and throbbing, pounding pain that felt somehow distant, as if experienced through a separate, second embodiment. I could feel the delicate mucosa in my mouth literally breaking apart as deep, searing hot ulcerations began to surface, going pop, pop, pop all over the tongue, throat, inner cheek and lips. A buzzing low frequency began to sound, the signal of fever creeping up from mysterious nether regions. I shuddered as I sat in my seat, only half aware of the kind young person who was showing me to my seat and the words she was conveying to me.

I am unable to give a coherent, intellectual account or critical analysis of the play and performance, but I can remember the sensory-spiritual impressions, which, to me, are more important at this point.

I loved the soundscape, it was gentle, yet never ever bland. The polyrhythmic nature of instrumental and vocal blending, melding, ebbing and flowing in animated soft exchanges of silence and stirring was superb. My hyper senses are attracted to such clear, clean mellifluous lines, they are like silken threads of multiple colours and hues, elegantly intertwining. The messages of disability, parallel embodiment and identity unfolded gracefully yet with authority, and I noticed the excellent blending of captioning, sign language, audio description, music and sound, with the spoken narrative, in intricate fluid contrapuntal movement. Ah, that sensation again, silken threads… For my senses, a J.S. Bach fugue, at times even a toccata, zephyr-like but never cheap muzak, its intrinsic force lay in the embedded message and the cogent energy emanating from each of the performers.

Such a pulchritudinous composition and execution of exquisite artistry, and a powerful example of Disabled Leadership. Not every performer is disabled, but the spirit of Disability orchestrated and pervaded the work with unmistakable vitality.

There were stabs of extraneous disturbance: painful olfactory dissonance interrupting my enjoyment, I could smell the breaths of the people sitting next to me, and each time they exhaled forcefully, my gag reflex would kick in. Some noisy interjections – people zipping and unzipping their backpacks, rustling of paper and plastic, hoarse whispers, and shaking vibrations travelling from their chairs to mine – served as minor irritations. Yet, these failed to dampen the potency of the work unfurling before me, enveloping me in its caress, wave upon wave.

Spellbinding.

Thank you, my friends and fellow arts warriors. I have been vehemently waving my fists and waffling on and on about Disabled Leadership in theory and practice, while slowly becoming exhausted and discouraged at the blank walls facing me, the condescension mixed with anxiety that is thrown at me, and the evasive humming that lead nowhere. “And Suddenly I Disappear: The Singapore ‘d’ Monologues” has restored my hope and passionate belief that this can be achieved right here in Singapore. We are ready.

Disabled Leadership in practice

In a previous post, I mused about Disabled Leadership, the great divide between theory and practice that many disabled persons face, and suggested one fundamental element that is crucial to recognition of disabled participants in the conversation on disability: payment as a basic mark of respect. Now, in this brief ‘follow-up’ post, I’d like to provide some straight-forward concrete examples of its practice in the arts and film.

I’ve iterated and reiterated before, and now once more, I am no activist – I have an aversion for confrontational activity, but advocacy is something that most disabled professionals are forced to engage in (in some way or other) due to the dominating climate of ableism and stubborn ignorance surrounding the disabled practitioner. In other words, advocacy – sometimes quite vehement and insistent – is made necessary because disabled practitioners need to clear the debris-strewn paths, clogged channels, and polluted waterways so that we can proceed with our practice.

A non-disabled friend asked me a question that inspired this post: Can you give me some concrete examples of Disabled Led Practice? I am an artist-researcher, my main focus of interest, therefore, is in the arts, and so I shall address this topic from this perspective.

What is Disabled Leadership and what is Disabled Led Art?

This.

Deej, a movie / documentary that has recently burst into the scene with astounding and well-deserved success and accolades, is about the life of DJ Savarese, a non-speaking autistic person. “Not just another film about autism!?”, the jaded may well ask. No. Not at all. This one is about DJ, but it is also by DJ. About Us With Us. I urge everyone to visit the film’s website to understand more. Continue reading

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?