I love the quietude of what people are calling “self-isolation” and “distancing”. I am one of those autists who delight in inhabiting my own little bubble of presence. Yet, I am unable to quell the force majeure of interconnectivity, and what my mind intuits and decodes is quietly shattering the gentleness of solitude.
My Autistic Brain, yes, blame that brain. All those little details, patterns, rhythmic sequences unfolding, unpacking and evolving. The minuscule bits and bobs that reach out with mournful tendrils, grasp, touch and intertwine across a massive expansive network of misery, fear, anxiety and pain. The final few seconds of gasping, life slipping away, the excruciating knowing. The gnashing and grinding of teeth as vicious evil commodifies lives, directing the theatrical tragedy from their self-established positions in the stratosphere, while commonplace humanity groans. Every little ornament – dust particles of affliction, microscopic droplets of misery – screams in shattering silence. The turmoil is palpable, overwhelming and crushing – all the frantically gyrating, jostling dots are concatenated in dolorous bitter chains.
It isn’t only sensory inundation that leads to meltdown. It’s also cognitive deluge that threatens shutdown.
Reblogged from bunnyhopscotch. Take note, those folks who want to contact me to do work, some basic fundamental professional decency is required. Do not bother if you are not prepared to uphold fairness, justice, equity and respect for persons with disability. Thank you.
I read Sara Luterman’s review of the new HBO series, The Outsider, with interest. The whole kerfuffle over Autistic (mis)representation in the media – from documentary to fantasy – has been stirring and swirling and churning and heaving and whatnot else in that great cauldron perched precariously atop a spitting fire of contention for sometime […]
The artistic sphere is nowadays abuzz with terms like “access” and “inclusion”, with all and sundry jumping into the scene laying claim to these trendy words, but how many actually understand what they mean in practice, I wonder? No, I am not talking about the fluffy feel-good pulling-at-heartstrings stuff, or the tired and worn circus-style acts that purport to ‘include’ the disabled but are actually poorly contrived, inexpert displays of awkward disability tokenism. I am looking for concrete, meaningful and practical facilitation of access, and an inclusion that allows persons with disabilities to function from out of their individual optimal realm. Every person has the latter, regardless of what it actually is in shape, size, colour or form, we all each have our own little space, a Clement Space, in which we feel safe and from which we are allowed to emerge wholly ourselves, not broken or wanting to be fixed.
A working trip to the United Kingdom at the end of 2019 perfectly illustrated for me in real-time the essence of true, respectful, creative, meticulous and effective support – that is, dynamic access and inclusion in action.
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.