Communication as Access & Inclusion

Clear Communication is Access & Inclusion

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.

Autism Explained Online Summit

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Registration Link: https://autism-explained.teachable.com/p/online-summit-free
Register for Free Access here: https://autism-explained.teachable.com/p/online-summit-free

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!

And here’s the preview to my session:

Don’t forget to register for your free access!

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.

Withdrawal

Dear Friends,

I have officially withdrawn from Eric Chen’s “Life After Death” Autism Forum, due to differences in professional ethos.

This event is solely organised by Eric Chen. I have no part in its planning, funding, ethical and intellectual content, nor should my name be henceforth associated with or used to promote it.

I wish Eric the very best in all his endeavours.

Dawn-joy Leong

object-thing

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.

Much Ado About Nothing?

Much Ado About Nothing? – Thoughts on the curious incident of the missing photographs.

Anyone reading or following my writings in social media and here in my website – especially my ‘friendly’ stalkers – would know that I have been fussing about having been omitted in the official social media for #APAC19 – the Asia Pacific Autism Conference 2019 – which recently came to a most successful end.

I was involved in the organising committee and the scientific committees. I was also a Plenary Speaker in Day 1 – one of only two actual autistic researchers invited to speak. Well, I wasn’t really invited, I actually quite vehemently volunteered myself for it. I felt that an autism conference ought to feature at least some actual autistic speakers at an authoritative level. Dr. Damian Milton was the other autistic Plenary Speaker.

You may gasp at this, and ask, “Why no autistic Keynote?” Understandable, many have asked me this question. Well, to be fair to the Singapore organisers, what has been achieved in APAC19 already represents a quantum leap in the direction of inclusion and progress for Singapore’s autism scene. I cannot express how very genuinely pleased I am at this amount of progress made within such a short time frame. But this is what is great about Singapore – once the powers-that-be decide on something, we can do it really quickly and pretty well too. This is the very first time an autism conference in Singapore included any autistic voices at all. Actual authoritative autistic presence in autism conferences was unheard of before this. So, please hold off the harsh criticism and bear with us. Baby steps. In fact, this wasn’t really a baby step at all – the baby literally propelled across a huge ravine and up a formidable mountain in one grand leap! Kudos to the organisers for taking on board the suggestions they did, and embracing the theme of ‘thriving’ in such a positive way. Autistic adults in Singapore finally had the chance to stand up and speak out, and those who presented did so with great flair and panache. I am proud to be among such brave company. The stigma is real, and many of them had to think twice, or more, before deciding to ‘come out’ of the ‘autism closet’ into the public domain – because fear of losing one’s job on account of one’s neurological difference is a very real thing here in Singapore.

So, back to the grand ‘fuss’ that I made over the last few days about the seemingly trifling issue of a few photographs of me being missing from official social media. I should not even need to explain, because any reasonable and reasoning human being would know the import of this, but I have decided to do so, in case some people failed to grasp it (there’re always the stragglers, and this explanatory post is for them, because I don’t want to leave anyone behind).

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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.

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