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

Autistic Thriving

Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018. Come join us and hear my ideas on how autistic and non-autistic people may grow and thrive, not despite autism but because of the unique features of autism, and what society can learn from autistic persons.

[Autistic Thriving – Dr. Dawn-Joy Leong]
There is a great deal of ‘awareness’ these days about Autism – mainly from non-autistic observations. However, where are the Actually Autistic voices in this cacophony of opinions and interpretations? What is it like to be autistic? Discover how Dawn learns to thrive within her autistic ecology, not despite but because of her autism.
Grab your tickets here: https://tedxpsthrive.peatix.com/

[自闭世界的生意盎然]
自闭症在当下取得了广泛的关注,只不过这些观察结果都是从非自闭症患者角度获得的。可是抛开这些不和谐的观点和解释,我们从何听到自闭症患者的真实发声?作为一个自闭症患者是什么样子?在这场演讲中,Dawn会向我们分享她是如何在患有自闭症的情况下茁壮成长。

Disabled Leadership in practice

In a previous post, I mused about Disabled Leadership, the great divide between theory and practice that many disabled persons face, and suggested one fundamental element that is crucial to recognition of disabled participants in the conversation on disability: payment as a basic mark of respect. Now, in this brief ‘follow-up’ post, I’d like to provide some straight-forward concrete examples of its practice in the arts and film.

I’ve iterated and reiterated before, and now once more, I am no activist – I have an aversion for confrontational activity, but advocacy is something that most disabled professionals are forced to engage in (in some way or other) due to the dominating climate of ableism and stubborn ignorance surrounding the disabled practitioner. In other words, advocacy – sometimes quite vehement and insistent – is made necessary because disabled practitioners need to clear the debris-strewn paths, clogged channels, and polluted waterways so that we can proceed with our practice. Continue reading

bloviation & the sacrificial lamb

My recent casual blog post, musing on Arts and Disability, and the devastating effects of non-disabled colonisation of the disability conversation, theory and practice in any field, with a focus on the arts, simply because this is my field of research and praxis.

“Perhaps it is time to take the entire conversation back and situate it on our own platform – the Actually Autistic / Actually Disabled stage. One that we choose for ourselves, not that which is designed and built by the non-disabled colonising forces. One in which there is no prerequisite social-political posturing of ambiguous, veiled or hushed up mumblings, no copious mists of gas lighting, and no contemptuous slime of condescension. Just honest truth and a light shining onto a path ahead clear of the debris of gurgling bloviation. Is this even a possibility, I wonder?”

bunnyhopscotch

20180512-bunnyhopscotch-bloviation bloviating babble bubbles

I learned this new word from my friend Rick. I like it. It has a robust movement to its physical form, flow and force. It sounds and feels like thick copious slimy globules arising from a pit of bubbling sludge. This word has a sensorial constitution that matches its meaning. Thank you, Rick!

“Bloviation” – such a proliferate and aggressively dominating activity in the field of Autism and Neurodiversity. Autism is a trendy topic these days, isn’t it? Everyone – from the housewife ‘AutismMom’ to the Professor in Psychiatry, and the outright quacks touting ‘cures’ and ‘healing touches’ mushrooming like unbridled viruses in between – seems to be dancing vigorously around the jolly campfire of Autism.The word makes me think of the many (I have lost count now, it is a long and wearying list) instances of having to silently endure protracted lectures, workshops, conversations, discussions, seminars…

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