Breakfast is my first meal of the day. I am a Foodie, that means food and all its accompanying sensory input, is important to me. If breakfast is somehow not ‘right’ to my senses, I am thrown off kilter for the entire day. This morning, while tucking in to my Nutella on Toast breakfast, I felt a sense of excited tranquility seeping in and slowly filling me – for those who understand what I call “elemental empathy” (i.e. the way some autistics relate and communicate with the material world around us), this was one of those connected full-body moments. A sense of relief followed the first thrillingly refreshing wave.
I am leaving the fierce, aggressive and thankless (for me) arena of focused autism advocacy here in Singapore. I jumped into the fray with a great deal of trepidation, and it was just as I expected it to be every step of the way. It did not disappoint my anxious predictions, but I am glad I did it. With the help of strong allies, the heavy door into the mainstream autism platform was held open just enough for other hopeful and enthusiastic autistic adults to step through. Whether they are ‘ready’ or not for this, it is not my place to critique or assess. It is now all up to those who wish to step into the limelight of advocacy.
APAC19 represented a first in Singapore – the very first time a major autism event has ever included actual autistic people. I cannot claim all of the glory, I am but one small potato in a grand salad mix, but I was the only autistic person from Singapore in the organising and scientific committees. I relied heavily on my learned and more senior allies for advice and facilitation – I must state that were it not for them, I would not have stayed the course. Of course, I did nothing much else, I was a lowly doorman after all. And I am happy to be. Elevation and pedestals do not suit me at all. The doorman did what she set out to do, and the willing people walked through who otherwise may not have been given passage. Duty done.
I am no hero, I never set out to be one, so please do not burden me by giving me that kind of label. Although one autistic advocate that I have helped and is now growing in prominence repeatedly said to me that their rhetoric is never to do anything that did not directly benefit them or their agenda, truth be told, I did not do it for personal gain – quite the contrary, in fact. The personal price I paid was high, and definitely not worth the pain, if one went by that autistic advocate’s principles, because I did not get any personal enrichment, professional advancement or job offers from it whatsoever. Actually what did happen was that I neglected my one and only most loyal companion – she grew old rapidly as dogs do – while I was busying myself in matters unrewarding to me or her. So, because of my decision, Lucy paid the price together with me, and she did not have a say in the matter. I suffered intense burnout at the end of it, doing something I am not comfortable with and for which I have little natural inclination and no ambition at all, which was thankfully mitigated by my attending the SYNC programme almost immediately after APAC19. It was a gruelling week long full-day seminar for disabled leadership in the arts, conducted by Jo Verrent and Sarah Pickthall, brought to Singapore by the VSA, NAC, British Council, SIF and other organisations supporting the arts and disability in Singapore. For me, that physically punishing week was mentally rejuvenating.
I’ve said many times before, I am not an activist, I am at best a reluctant advocate – a doorman, nothing more.
I have had to make some difficult professional decisions recently. I did it for me, not on a personal level, but to protect my professional ethos. Unfortunately, I have been accused of various things, some emotional and personal, and others more general:
I do not think this is the right way to treat someone who has trusted you.
I hope that you realise the serious implications of your decision, in relation to the autistic community in Singapore.
…this will not go down well as far as impressions are concerned.
It matters little to me what others think of me – is this arrogance or just wanting to live a simple life dedicated to my own moral compass? Each person has their right to their opinion. Myself, I know it is time for me to leave that arena and return into my space of comfort and nurture, it is time for me to focus on Lucy and her wellbeing. It is time for me to appreciate moments with my family and true friends. It is time for me to do what I love best – my research and material practice.
Clichéd as it may be, it is time for me to journey “home” where I want to be, where I feel I belong.
I am autistic – hence, existing will be in itself a kind of self advocacy. My art embraces my neurofunction, I cannot and will not deny who I am, especially not in something as important as my life’s work, my Autistic Joy. Even my relationship with Lucy emerges from my autistic embodiment. My very existence together with Lucy, will thus continue to advocate. But this is the kind of advocacy I am comfortable with. My life, my love and my work are my advocacy. Not autism conferences, forums and whatnot, being distressed by people espousing ideas dissonant to my inner harmonic flow, listening to people argue endlessly on theories, becoming alarmed at those promoting bizarre ideologies too closely resembling cult-ism, etc. Too disturbing for me. I leave that to people better able to cope with this kind of environment. There are many autistic advocates and even activists I admire and respect. Many far more capable autistic researchers than myself. The autistic community in Singapore can turn to those for guidance. I have repeatedly pointed out the way. My yearning is to operate within my own intrinsic Joy. And now, at last, after three harrowing years, I am ‘leaving in order to return’.
Scheherazade’s Sea reawakens in 2020. My mother even bought me an acoustic piano (I detest the electronic keyboards, my senses recoil from even those with ‘weighted’ keys). I have begun to practice again. Cole Porter, Gershwin, Irving Berlin, old Chinese pop songs, and J.S. Bach for a start. My weak muscles need to regain its memory. Lucy lies next to me, absorbing this with her signature poise and elegant acceptance.
Yes. We are going ‘home’ – Lucy and I. Wish us journey’s blessing!