Clear and direct information is the autistic person’s access to the human world. Neuronormative communication is confusing and extremely anxiety inducing. Questions go unanswered, conversations are left suspended in mid-air, semantic meaning is vague and the autistic is supposed to be the one with the communication impairment?
Communication is respect. Clear communication is like a well-built ramp for a wheelchair user to access spaces that are otherwise inaccessible. Without clear and timely communication, the autistic person is made to crawl around the floor with no idea where the entrances and exits are, crawl up the stairs and still not have any confirmation of exact location.
Communication is access and inclusion too, in case people forget. What is important is not always visible or physical. People who work in disability focused fields need to remember this. It’s not always about wheelchairs.
I shall be chatting with Paul Micallef on 18 October about Autism-Friendly Learning Environment, how to encourage learning from within the autistic paradigm, rather than by correction and coercion to comply with neuronormative channels.
Autism Explained Online Summit is a week-long online summit featuring autistic and non-autistic professionals in the field, providing insights and advice to parents on different themes. The line-up of speakers includes Temple Grandin, Peter Vermeulen, Yenn Purkis, Daniel Giles, Andrew Whitehouse, Shadia Hancock, Wenn Lawson, Tom Tutton, Chris Varney, Emma Goodall, Jac den Houting, Chris Bonnello and many more presenting eclectic viewpoints, all in the same space!
It has taken me a long time to finally write about my appearance in the last episode of the series on Autism, “Uniquely Me – Episode 6“, which aired on MediaCorp’s Chinese Channel 8 , on 11 June 2019.
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.
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.
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.
Autistic pursuits and objects of passion: lavish indulgence or crucial intervention?
Autism advocacy can be devastating savagery to the Autistic Artist’s soul. Relentless and aggressive, the crass normative dominance chaffing against autistic fragility, valiantly struggling to be heard amidst Daedalian gyrations, asphyxiating gas-lighting and gelid silence, is crippling.
The Artist needs to recover Sense of Soul, that Clement Space within which emanates forth, once revived and strengthened, as vibrant virtuosity and vitality. Spiritual Sustenance.
And this Autistic Artist has been slowly mending, resuscitating, rearranging, invigorating and awakening Clement Space, Autistic Joy.
An ongoing exercise that is critical to Beingness, that marks the difference between bleak existence and dynamic Life.
This morning, I unearthed an important Object that performs a key role in this unfolding and unpacking. It is non-functional in the mundane utilitarian sense – a pair of old Ferragamo wedge shoes transformed with rocks, cheap plastic baubles and paint. It cannot be worn, it does not fit into the category of High Art, whatever that is spun out to mean, it is not aesthetically pleasing in a general sense, and it has no monetary value. Yet, it is functional because it serves a completely different purpose, sublime yet forcefully tangible to the ones who are able to perceive its potency. For this Autistic Artist, who created this object-thing, it and the act of bringing it out of its storage space, of un-hiding, un-masking, marks another hidden, intimate junction of reflection and compulsion towards healing and growth.
When interacting with an autistic person, it is best to speak with clarity, and be honest. Blunt honesty is valued in our autistic social system. We prize the truth, and we admire those with the courage to speak it and stand by it. Cards on table, nothing hidden.
If you think Gas Lighting is insidious, wait till you are caught in the midst of ‘Asian-style’ subterfuge. You’d be made to doubt your own name after awhile, and discredited using your autism diagnosis, with its plethora of ‘deficits,’ against you.
There is an old Cantonese saying that aptly describes the kind of spurious babbling that usually follows when petty trickery is uncovered and the truth is laid bare as a baby’s bottom on a damp monsoon day:
“Fallen flat on your face and still trying to claim you were just collecting sand.”
Autistic people get that ‘sand box’ sophism all the time from the neuronormative, and we are expected – demanded – to accept it. Or be damned. But that is just the lower-level type of social gyrating, the kind that people with big hearts and large vision may choose to just laugh off.
Pardon me, please? Could you please kindly say that again?
Bitte wiederholen Sie?
Ah, mais non. There is a higher-order that is far more treacherous, the exquisitely Machiavellian type reserved for the Grand Masters of Perfidy.
臥虎藏龍 – The Crouching Tigers and Hidden Dragons are the highest order of complex social-political manoeuvrings that utterly confound Autistic Honesty. Next to these, we are well and truly “socially impaired”.
What should the Exhausted Autistic Entity do in such situations? There may be many suggestions and tactics advised by wiser souls than I. For me, it is time to just walk away – redirect and go along my way with my soul still intact. Leave the Magnificent Ostentatious Stage of Good Deeding. My old friends Artaud and Wagner are no match for these Maestros. We shall attend to lesser matters of Autistic Joy and Autistic Beauty.
Clement Space awaits, and there is Lucy, silently watching and anticipating with her eyes of pulchritude.
In an ugly world, attempting Empowerment of Beauty can be a dreadful struggle, one which goes against the fundamental nature of Beauty itself. But we need to keep going, believing, hoping, lest darkness engulfs & destroys.
Imagine a world in which different kinds of minds contribute from diverse platforms to form a dynamic, cohesive, global whole.
Imagine safer, gentler and stronger communities in which eclectic ways of thinking may thrive within a Neurocosmopolitan culture of resonant, empathic vibrancy.
It is not my purpose to ‘fix’ what I ‘broken’, but to empower Beauty in the vulnerable and unnoticed.
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.
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 →