Much Ado About Nothing? – Thoughts on the curious incident of the missing photographs.
Anyone reading or following my writings in social media and here in my website – especially my ‘friendly’ stalkers – would know that I have been fussing about having been omitted in the official social media for #APAC19 – the Asia Pacific Autism Conference 2019 – which recently came to a most successful end.
I was involved in the organising committee and the scientific committees. I was also a Plenary Speaker in Day 1 – one of only two actual autistic researchers invited to speak. Well, I wasn’t really invited, I actually quite vehemently volunteered myself for it. I felt that an autism conference ought to feature at least some actual autistic speakers at an authoritative level. Dr. Damian Milton was the other autistic Plenary Speaker.
You may gasp at this, and ask, “Why no autistic Keynote?” Understandable, many have asked me this question. Well, to be fair to the Singapore organisers, what has been achieved in APAC19 already represents a quantum leap in the direction of inclusion and progress for Singapore’s autism scene. I cannot express how very genuinely pleased I am at this amount of progress made within such a short time frame. But this is what is great about Singapore – once the powers-that-be decide on something, we can do it really quickly and pretty well too. This is the very first time an autism conference in Singapore included any autistic voices at all. Actual authoritative autistic presence in autism conferences was unheard of before this. So, please hold off the harsh criticism and bear with us. Baby steps. In fact, this wasn’t really a baby step at all – the baby literally propelled across a huge ravine and up a formidable mountain in one grand leap! Kudos to the organisers for taking on board the suggestions they did, and embracing the theme of ‘thriving’ in such a positive way. Autistic adults in Singapore finally had the chance to stand up and speak out, and those who presented did so with great flair and panache. I am proud to be among such brave company. The stigma is real, and many of them had to think twice, or more, before deciding to ‘come out’ of the ‘autism closet’ into the public domain – because fear of losing one’s job on account of one’s neurological difference is a very real thing here in Singapore.
So, back to the grand ‘fuss’ that I made over the last few days about the seemingly trifling issue of a few photographs of me being missing from official social media. I should not even need to explain, because any reasonable and reasoning human being would know the import of this, but I have decided to do so, in case some people failed to grasp it (there’re always the stragglers, and this explanatory post is for them, because I don’t want to leave anyone behind).
I am not grumbling about the photographs per se. It is not a problem of personal vanity or an over-sensitive ego. Where it comes to ego, I admit I have a pretty healthy and rather large one, much to the discomfort of my detractors. I do not need a few little photographs in the social media of an autism conference to make me feel good about myself, thank you. I’ve already appeared in enough media – it is a frightening thing, in case people do not realise it. When one is featured in public media of any kind, one loses control over how one appears and how one is presented. And I detest that uncertainty. Most autistic people dislike risk and unpredictability, remember? It is true of me. Left to my own devices, I’d much prefer never to be pasted across any social media that is not within my own immediate control, or be featured in any television programme or news article that I did not myself write and produce. Each time I do this, I take a huge risk, and it is for a very well thought-out and thoroughly considered purpose – the greater good. What neurotypicals – especially those who love being featured all over the place – do not realise is that the anxiety is excruciating for me. So, why am I puffing around about being excluded from all official social media photos of the great event? (Until this morning, that is, when they deigned to upload a couple, as a nice gesture of ‘inclusion’ after-thought or maybe because news got to them about my kerfuffling – who knows? Nobody would ever tell the truth of it anyway.)
Well. For me, this is about Representation. I am the only Singaporean autistic person who made it as far as being a Plenary Speaker (and the only other autistic researcher in the whole world of many many competent autistic researchers). I spent from my own resources – effort, energy, funds, time – to work in this conference, because I felt Singapore is ready for Autistic Singapore to stand and be counted in a major autism event such as this, and I can pay it forward and contribute to this positive movement. The Significance of my representation at APAC19 matters to the adult autistic community in Singapore. My erasure signifies the expunction of actual Autistic Presence at this level. I don’t personally care about hierarchies created by the normative world, but I do care about autistics in Singapore who are encouraged or discouraged by what is happening on the autism platform. As much as the neurotypical folks are watching me – and I know you are – my autistic neurotribe is also watching me, with bated breaths all.
This is not even about advocacy per se. I am, at best, a most reluctant ‘advocate’. I have said so as much in a previous piece of writing – please check out my blog post on this topic. I would really rather not do any advocacy at all: I wish society could progress to the level of true inclusion where I can just live my life quietly and peacefully, unhindered, working on my research and artistic passions without having to educate and struggle on this matter. But that is a pipe dream for most persons with disability, not just autistic persons. Perhaps, neurotypical people may find it hard to believe that anyone would pour this amount of time, energy and personal resources into something one is hesitant to do. Well, that is the neurotypical mindset. I am autistic – so, I think and operate very differently. Living life entrapped within an unyielding and sometimes outrightly alienating neuronormative social-political landscape is a constant challenge – it isn’t autism that is the difficulty, it is the prevalent attitude towards actual autistic people that is the problem.
Being the only openly autistic person in Singapore with a PhD in autism, neurodiversity and multi-art praxis means that my personal journey has wide-ranging affect and effect on those around me, and especially on my own neurotribe, the autistic community in Singapore. What I do in public has to count, has to matter, has to be contributory to the greater good of my autistic community, and to the wider social sphere.
I was taught from a very young age, by my autistic father and non-autistic mother, that anything worth doing must be done to the best of one’s abilities, with dynamic vim and vigour. As long as I have tried my level best at something, the actual ‘success’ is unimportant in the whole cosmic struggle of things. This is a principle I have applied to my navigation of life, and it has served me well – mostly – for the 53 years of my existence. Hence, I apply this to my work in autism and disability advocacy, despite my personal apprehension and reservations. And no, to those who wish to medicalise me, I say that this is not meaningless or obsessive perseveration, it is meticulous and passionate excellence, a feature not uncommon among autistic persons. (Sadly, it is also a feature that can make us the object of ridicule, exploitation and manipulation, but that is another story for another time and place.)
Why am I having to explain myself at all? That is another tricky issue, isn’t it, and one mired in the whole double empathy problem and historical oppression of the Autistic Voice. You see, the social-political clime of neuronormativity demands that autistic people go to great lengths and monumental exertion to perform and compensate for the lack of reciprocal empathy from neuronormative for autistic, while trying simply to survive. Yes, you read this right. It is not our autistic ‘social impairment’ that is the stumbling block here, it is the neurotypical’s social impairment – the inability to understand and hence to trust the autistic embodiment – that is the major obstacle to what Peter Vermeulen calls “neuroharmony“. Well, talking about harmony and music: the autistic is naturally well-pitched – most of us have perfect pitch too, I do – but there can be no harmonious singing if the neurotypicals are stubbornly tone deaf or refuse to practice hard at their parts in the musical score. (I am a trained musician – a composer and singer – so I do know something about harmony and choral singing.)
Hence, that empathic endeavour of ‘over’-reaching is ingrained in the autistic existence from a very young age, and we are too often mocked and gas-lighted for this.
“Oh, you over-reacted!” or “Oh, we didn’t mean it this way, it was just a misunderstanding, don’t over-think things!” etcetera ad nauseam.
The Sally-Ann Task failure, remember? Actually, since we are told we are empathically and socially impaired by non-autistic clinicians, we thus make huge efforts to empathise with, understand and accommodate the neurotypical and the neurotypical world. Yes, yes, and then there’s that thing about “context blindness” (also another hypothesis by Peter Vermeulen) that is shamelessly used by the neurotypical on the ground to derail us autistics. What context? Whose context? And why should one context be superior to another?
The truth is, many of us older autistics actually do know how to read the neurotypical – from years and years of pattern recognition and effortful learning. I explain it this way: the jazz musician is said to be “improvising” but actually what is going on is that any Jazz musician worth their salt has created vast libraries of ‘data’ – rifts – inside their mind. During “improvisation” they pull out the bits and bobs of rifts at lightning organic speed, and arrange the snippets of data into an amazing, flowing cohesive whole. J.S. Bach was also a great improviser, so this style is not exclusive to Jazz. This is how many of us autistics have mastered the ‘neurotypical puzzle piece’ (yeah, what colour would you like yours to be – sorry blue has already been allotted to us!). But does the neurotypical know how to and want to read us? Can the neurotypical ‘improvise’ autistic mentalisation? Can the neurotypical master and overcome neurotypical context blindness to the autistic social system? Some can and do – though sadly, thus far, few are the ones who spend their lifetime or even any amount of time at all fine-honing this skill. Those are our true allies.
Talking about allies. When autistics thrive, so will our allies too – and everyone around us. This encapsulates my entire message, really. There is power in mutual trust and respect. I am not here to snatch your soul from you (contrary to what that video from Autism Speaks – I am Autism – claims I am trying to do), I am not here to take away your jobs, I am not here to stage a coup. I’d be the first to run away should the space be taken over completely by autistic people. I celebrate and thrive in diversity. I embrace Neurocosmopolitanism at its harmonious best. I was basking in the wonderment of having achieved this much inclusion in Singapore at APAC19. Until the bottom fell from beneath my feet, with friends and supporters eagerly looking out for photos of me and Lucy, and then finding not a single one at all – which is the reason for this post. I wish I didn’t have to write this at all. I wish this had not happened. Trust is a fragile and delicate thing. We need to trust each other in order for all to thrive. In any well-performed choral work, each and every singer needs to practice and refine their individual skills, and be fully responsive and responsible to the musical score. It will not work well if one or two, especially the lead singers, deviated because of lack of trust. There can be no harmony if there is only one melodic line. No neuroharmony if only the neurotypical sing or only the autistic sing.
It is not my purpose to ‘fix’ what is ‘broken’
but to empower beauty in the vulnerable and unnoticed.
I am no activist, though activists have their place in progress, I am not one. I am an Artist and a Musician. I am also a researcher. It is my personal quest to bring and empower beauty wherever I may journey. When beauty thrives, all thrive. That is my main message to everyone – autistic or neuronormative. We’re in this world together. Why not acknowledge the importance of our togetherness, rather than prance around the tulips in anxious choreographies of suspicion and threat?