worth

It’s time for the next round of awards. The above video was made by Mediacorp to herald this upcoming event.

I mean it when I say simply that I am at best a reluctant disability advocate. My worldly “achievements” have never been a part of my conscious goals, whether long or short term. There was just one dream that I made huge effort, and ultimately extreme sacrifice, to attain: my Ph.D and the journey towards finding Selfhood, which are intertwined and inseparable. Those years as a Ph.D scholar were the very best years of my life. No regrets at all. The best thing I have done for myself. The subsequent awards, accolades, recognition and media attention were and still are secondary, quite unexpected and, to me, a burden even, which I bear as a consequence of the universe’s generosity towards me. Paying it forward.

My worth is not even remotely associated in any way any social commendation. I said it very clearly in the first chapter of my Ph.D dissertation, my path is an inexorable one, I am merely custodian and facilitator to the artistry that seems to emanate from me, but which I know is actually the result of my connection with the vastness of the universe. It is an entity in itself, with a path of its own. I follow and I allow myself to be a channel for its expressions, to the best of my capabilities. The process – the journey itself – is my reward and honour. I am less interested in the final product or what the system refers to as “outcomes” which I find dreary and at odds with my artistic quest. How does a true artist actually measure “outcomes” in terms of clicks, views, audience numbers, churning and turning statistics? It cheapens the art, and produces mediocrity. The same with measurements for prizes and awards. The structure itself is faulty. Not every winner is a true winner. Some winners are there because of political and social reasons, some because of sheer determination and relentless, repeated attempts, and then the few who truly deserve the recognition. I am Autistic, the social-political mechanisms of the normative world are a puzzle to me, but I accept that I have to live in and try to survive and even thrive in this alienating clime. Yet, in my quest to navigate this minefield, I am not at all competitive. Yes, I do speak out when I see an injustice or moral / ethical aberration – often bluntly, without the nice-nice frills and embellishments that normative society so values and insists on – but in truth, I am no warrior at heart. I merely wish to Be – undisturbed, well supported, and freed to give back to others the blessings I have received.

Thank you, world, for the amazing awards and tributes, I am grateful to have somehow unwittingly stumbled upon them. But all I really wish and yearn for is Clement Space, with Lucy, and facilitation to follow what is organic and intrinsic.

So, if there is one takeaway from this part of my adventure, as a ‘prominent’ disability advocate, it is this: YOU are worth it. Disabled or not. Your worth is within you. And only you can determine this. All else is ancillary.

CNA Interview for the Goh Chok Tong Enable Award

This is my latest CNA interview: “She didn’t know she was autistic until she was 42. It changed her life.”

If there is only one takeaway from this interview, I’d like it to be this quote:

That people are worthy, regardless of whether they win an award or not.

Uniquely Me Episode 5 – engulfed

Episode 5 of “Uniquely Me” aired tonight on MediaCorp’s Channel 8.

Uniquely Me – episode 5

I have to say this episode was the most unsettling to watch – almost sliding down the slippery slope of the tragedy-cum-heroic narrative, this episode featured two ‘strong’ women speaking about their lives with their autistic children, who are now young adults.

I felt very sad for the young man, Zhen Yu. Far be it for me to doubt his mother’s love for him, her dedication towards the young man pervaded the space, but there were many moments in her interaction with the young man that made me cringe and even bristle. I felt his distress, there were moments where I knew he was attempting to communicate, but the mother completely missed the gestures and sounds he made, and she chided him, as if he was a naughty toddler making a nuisance of himself, preventing her from ‘adulting’ in front of the camera. There was a split second where she even grimaced and rolled her eyes. There was a sense of embarrassment, she looked exasperated and annoyed, when interacting with him. The mother spoke mostly about her hopelessness and despair, not his.

The other autistic young person, Edura, appeared to be happier – there was a lot of physical affection going on and some smiles and laughs. Edura’s mother runs workshops or ‘sharing’ sessions for other mothers with autistic children, on physical touch and muscle relaxation. I did cringe at the word “heal” – just like “cure” and “recover” all speak of ableist concepts of autism as a scourge / disease – but I’ve come to expect it of the neuronormative way of thinking.

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Uniquely Me Episode 1 – a perspective

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The first episode of “Uniquely Me” – a series about autism and autistic lives in Singapore – aired last night on MediaCorp’s Chinese Channel 8. Immediately afterwards, there were rumblings and rants emerging from the adult autistic community in chat groups and on Facebook.

Background

Some contextual background is needed before I launch into my own perspectives and reactions to this twenty minute show.

Autistic people – we are an oppressed and traumatised, vulnerable and hurting community worldwide. As autistics, we are already predisposed towards hypersensitivity, detail orientation, and communicate with the world in ways unlike the normative. Add to this the accumulated collective cultural history of Autism (see Steve Silberman’s “Neurotribes” – the best book published thus far on the history of autism), and the specific situation here in Singapore, where the perception of autism as a whole is mired in the old medical model, and autistic people are generally presumed incompetent rather than competent, completely devoid of our own voice / voices: we have thus acquired a collective trauma, and individual heightened anxiety around the subject of Selfhood. The setting is a painfully raw, tender, largely confused and ignorant, and emotionally volatile scenario. It is not surprising, then, that many in the adult autistic community have reacted explosively, with anger and shock, at this very stark presentation of autistic persons with complex needs in the first episode. Continue reading