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?