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?

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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.

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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.

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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.

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“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.

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  • 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.

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  • 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?

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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!