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.

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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?