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.

– smiles and laughter –
… “heal” … ???

I don’t know what to make of this episode. Stylistically, I can see a commonality across the other episodes in the crisp and gentle but detached reporting style and lack of an excessively emotional musical soundtrack, but this one came across as the oddball, the sore thumb. I am left with a metallic taste at the back of my mouth, my tongue is dry and my senses somewhat stretched thin. I have more questions than I have observations, or perhaps my observations lie in the questions that oozed out from cracks and fissures?

Why does nobody seem to pick up on the distress of the young man, Zhen Yu? The camera – the ‘eye’ of the viewer – wanders in and out of such stark moments of grief and frustration, I am flabbergasted at the cluelessness of everyone around.

Edura comes across as very much well connected with those around her, yet the people bemoan the sad fact that she is unable to speak. To me, just watching her body language, she is conveying a lot. Yet, I feel she was not duly recognised for her efforts. Why do neurotypicals place so much importance on speaking? And if words were so important, then why has nobody tried Augmented Assistive Communication (AAC), Sign Language or other alternative ways of making worded communications?

To be honest, there are no easy answers. The struggles and challenges are real. The road is long and fraught. Yes, yes, and yes. But what is frustrating about this episode is that everyone is busy addressing the camera, all speaking with such confident incomprehension their manifold non-autistic interpretations and opinions, their non-autistic feelings and dealings, non-autistic lion-hearted mettle, non-autistic despair and despondency. The protagonists here are the mothers, not the autistic persons at all – and there is even a doting aunty in the mix too. Tears, fears, snappiness, vulnerability, dreams dashed, ‘inspiration’ and obfuscation, rushing around putting all the externals in place, so preoccupied with whatever their ‘mission’ may be that there was, for me, no significant poignant moment of simple tenderness or gentle stark confrontation – quite unlike in Episode 3. The title of this episode shouldn’t be “Uniquely Me” it should be “Momma Interprets Me”. Sigh…

… “imperfections in life”…

It was, frankly, an exhausting watch. I know the director tried to keep it unembellished, but the strong overpowering personalities of the women – and their neurotypical views of autism and emotionality – took over the entire domain in a rather trenchant way. I am overwhelmed by the sheer force of the non-autistic personalities in this episode – engulfed and tired. Perhaps this, too, is the ‘telling it like it is’ – after all, the reality is that autistic persons are inundated and suppressed, oppressed and repressed by the non-autistic narrative of autism.

Now, I am wondering how the last episode, in which I am featured, will unfold. This is making me a tad nervous. And it has brought home yet another glaring fact: no matter how well-meaning a production may be, no matter how steadfast the intentions, when there is no in-depth and thorough consultation with actual autistic persons in the creative process of such a work as this featuring autistic persons and their lives, the unpacking remains through the lens of normativity.

Still, for what its worth, this series has succeeded in a way to throw a spotlight on Autism in Singapore in a humane way, albeit rather ragged and fragmented, without the lavish, lush helpings of smothering inspirational-porn. I didn’t notice any excruciatingly melancholic violin music, anyway. A relief, to say the least.

Perhaps next time, Actual Autistic film makers will emerge to tell our story from our own perspective, and perhaps our community will some day find a voice of our own?

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neurodivergent world

Clement Space @ Playeum 2019 – Dawn-joy Leong

Seems as if I’ve been involved in quite a few “firsts” in Singapore lately. The most recent was the very first Autism/Neurodivergent-Led, Disabled-Led Art & Design residency, which was support by the National Library’s library@orchard branch, and yesterday saw the soft opening of Singapore’s first Neurodivergent immersive and interactive space – crafted by two autistic artists and two artists with Down syndrome, curated by Esther Joosa and Imran Mohamed for Playeum, a centre for children to discover creativity in multiple ways. Continue reading

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

snake oil

LA PETITE PRINCESSE SERIES

The Princess & The Snake (2010)

Autism is trending these days. Well, it’s been top of the pops for quite some time, actually. The more sensational the better, it seems, thanks to neuronormative machinations. Big money is to be made here, so it’s not surprising that the field draws so many quacks and snake oil peddlers. From MMS (which is basically bleach solution) to ASEA water (saline water), to a plethora of expensive dodgy programmes claiming to help “cure” / “shed” / “overcome” / “reverse” Autism, the marketplace is busy indeed.

I can understand that parents, especially non-autistic parents, are desperate. Parenting is not easy by any measure. For a non-autistic parent of an autistic child, finding themselves awash at sea in a realm completely alien to their own, grasping at straws for quick salvation is not unnatural at all. However, what grieves me is, in their readiness to part with money for snake oil, it is their autistic children who will bear the brunt of this folly, the children who will eventually grow up into traumatised autistic adults or autistic adults deprived of their intrinsic worth performing poor imitations of neurotypicality. Continue reading

Services / Engagements / Collaborations

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Dear Friends,

I’ve set up a page listing the various services I offer, and the kinds of collaborations I am interested in. Please visit this page for more detailed information: SERVICES.

If you’re interested in engaging me for lectures, workshops, collaborations or art commissions, please contact me via this email address:

dr.dawnjoyleong@gmail.com

Thank you!

Dawn-joy.

Data-based study? – Whose data?

‘Data-based’ study – whose data?

(From: Dawn-joy Leong, Scheherazade’s Sea – autism, parallel embodiment and elemental empathy, 2016).

In 2014, I took part in a study conducted by a PhD researcher who claimed to specialise in aspects of physiological and psychological empathic and social motivation in autism. I was told in advance that the study would be about emotional vs. cognitive empathy. I remember thinking that I had read a few similar studies on this same subject, but couldn’t recall the exact titles of those papers. “Replication enforces truth,” I recall the words ‘auto-writing’ on my mental blackboard, for no apparent conscious reason. The laboratory was situated in a building tucked away behind another more prominent block. Continue reading