Uniquely Me – Finale Episode 6

Uniquely Me Episode 6 – screenshot

It has taken me a long time to finally write about my appearance in the final episode of the series on Autism, “Uniquely Me – Episode 6“, which aired on MediaCorp’s Chinese Channel 8 , on 11 June 2019.

Uniquely Me Episode 6 screenshot of Jun Wei playing the French Horn.

I’m honoured to be paired with Jun Wei, a fellow musician, in this feature. I thank director Bee Har Koah of Threesixzero films for her sensitive handling of the subject. It was a pleasure to work with her, and she did not disappoint my trust in her artistic integrity. My greatest fear each time I consent to be featured in public media of any kind is the twisted portrayal of “inspirational porn”, sensationalism and evocations of a grand pity-party. It did not happen in this series, and I felt the episode unfolded in a practical, unemotional way, offering concrete real-life glimpses into our lives.

Uniquely Me Episode 6 screenshot of my video series, “An Olfactory Map of Sydney, 2017” premiered in The BIG Anxiety Festival 2017, Sydney, Australia.

I appreciate that the episode highlighted our artistry and our passion for music and art, rather than focusing on “overcoming the odds”. It did not create heroes out of us, but rather presented a human side to our parallel autistic embodiment.

I also love the way director Bee Har included Lucy in such a sensitive way. Lucy is truly my muse, closest companion, Canine Angel and lastly, my trained assistance dog. She has traversed with me, always watchful, always faithful, across seven years of adventure, tumultuous changes, unexpected achievement and inspired my concept and practice of Clement Space. I owe her my very life, I wouldn’t be where I am were it not for her steadfast and cogent presence.

Uniquely Me Episode 6 screenshot of rehearsal in progress with director Peter Sau and Shai, and Lucy looking on.

Many have asked me whether I have directly benefitted (financially or career-wise) from all the exposure in the media. My answer is a definitive no. I have not received any grand offer of financial gain, fabulous professional engagements or that elusive thing that autistics all desire – a decent job commensurate with our skills and qualifications. Quite the opposite, in fact. I have said often that I find it stressful and anxiety-laden to be interviewed or featured this way. I am revealing intimate parts of my life, leaving myself open to criticism and gawking, and I never know if or when the journalist or feature director will be faithful to my guidelines and demands for accuracy and respectful portrayal. Thus far, I have been lucky to a great extent – I have managed to avoid being held up as “inspirational”, and the media coverage has been largely respectful according to my own terms. But why do I even do this, if it brings so much discomfort? My reasons are simple. This is my contribution to my autistic community, my way of advocating for respect, equity and understanding, presenting the human side of my autism, laying bare my own fragility for a chance that someone somewhere may be blessed by my derring-do, comforted by my facing life challenges with honesty, or persuaded by my courage to step forward into the harsh, unforgiving limelight.

We are all autistic, we share a common neurological function, we face similar challenges, yet we are all uniquely different individuals in a richly textured existence. Listen to us, learn from us, respect our narratives, and embrace us as part of the fabric of human existence.

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.

Continue reading

Uniquely Me Episode 1 – a perspective

00 TITLE SCREENSHOT.png

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