With Us

(Transferred from Bunnyhopscotch.)

“For us without us” or “Nothing about us without us”? More and more, I am meeting non-autistic allies who are standing alongside our advocacy and lending strength and dynamism to our cause. Here in Singapore, there has been an ‘awakening’ of sorts too, but we have a long way to go before we can achieve deep rooted progress at the very most fundamental levels. We are a very ‘progressive’ city – judging by what’s visible to the eye, at least. We do know how to do things well, if we want to. And we’ve done so many things extremely well. For one, I am immensely proud of our airport. There’s no need for me to sing the praises here – you can look it up anywhere and everywhere. I’m also pleased and relieved that people don’t have to fear being gunned down randomly on the street or in school. We’re by and large a pretty safe city to live in, and I’ve lived in a few rather pleasant cities too, but none with the kind of placid security that Singapore has. I am also really encouraged by the many positive changes that have taken place in the disability sector – the higher levels of awareness and desire to learn better ways – even within the short span of the last two years that I’ve been back. We are a robust little nation, and this is proof that we can do things quickly if we decide we wish to.

OK, so, here, today, I am talking about Autistic equity and autonomy.

A prominent non-autistic advocate for Autism in Singapore asked me this question, and I have no reason to doubt her sincerity, in fact, I do believe in her dedication to our cause (paraphrased):

Are only Autistic people allowed to advocate for Autism? What about non-Autistic people like parents and friends? Do we not have a stake in Autism Advocacy too?

My answer was probably a tad too wordy for this kindhearted person, because she never replied thereafter, leaving our ‘conversation’ without cadential closure, which is a ‘normal’ part of interaction with non-autistic persons. I am fine with that, technically, it’s all cool, except that this kind of thing leaves my autistic brain inside an echo chamber of very loud silence, which I am not sure what to make of, really.

Let me try to put it through again in a more neat and tidy nutshell, because I understand that non-autistic brains tend not to like too many details, and typical autistic communications tend to be detailed – hence the tension between the two realms. (Back to the empathy issue – Empathy works both ways, shouldn’t it?)

Autism Advocacy benefits greatly from the voices of our allies. We cannot do this alone. But allies are allies, you need to allow Our voices to lead the way, to shape the form and direction, and you need to listen to us about us. Stand with us, not for us.

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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

Data-based study? – Whose data?

‘Data-based’ study – whose data?

(From: Dawn-joy Leong, Scheherazade’s Sea – autism, parallel embodiment and elemental empathy, 2016).

In 2014, I took part in a study conducted by a PhD researcher who claimed to specialise in aspects of physiological and psychological empathic and social motivation in autism. I was told in advance that the study would be about emotional vs. cognitive empathy. I remember thinking that I had read a few similar studies on this same subject, but couldn’t recall the exact titles of those papers. “Replication enforces truth,” I recall the words ‘auto-writing’ on my mental blackboard, for no apparent conscious reason. The laboratory was situated in a building tucked away behind another more prominent block. Continue reading

PhD Dissertation 2016

I finally uploaded it here.

Scheherazade’s Sea: autism, parallel embodiment and elemental empathy. 2016

It’s been sitting there in the bowels of my external storage drive since 2016. I am very proud of this work – not merely because I won the top award to be won among postgraduates, the Dean’s Award for Excellence in Postgraduate Research 2016, but much more because of the way I survived the odds with Lucy’s help and that of my loyal friends, and my one and only amazing sister (and her wonderful hubby). It is a team effort of grit, will, faith and a lot of sand in the mouth. It is a testament to me of the beauty of love and friendship.

As the final chapter will tell, the work has been the best thing to happen to me. I waited and longer for this all my life, and it is a dream come true. (The PhD journey – not the Dean’s Award, I never dreamt of that, never in my wildest dream would I think I would win it – actually, I didn’t even know it existed until I was informed that I was in the running!)

Thank you, dear friends who have helped prop me up and given me all that amazing strength to persist.

WE DID IT!

Scheherazade lives on.

Autistic Thriving @ TEDx

This is the complete unedited script of my TEDx speech, delivered today amidst a flurry of technical failures and farcical-comedic twists. (Read about it here.)

AUTISTIC THRIVING
Dawn-joy Leong
4 August 2018
TEDx Pickering Street
Singapore

~

I dance,
Because
I cannot walk,
The ground,
It is too strange.
I must count:
One, two,
One, two, three!

Autistic people are given many different labels by the non-autistic world. One of them is ‘clumsy,’ and by that measure, I suppose I am – it is a conscious effort for me to walk in a straight line, navigate bumpy surfaces, and stroll and chat at the same time. Yet, how does ‘clumsiness’ explain the ability to dance? When there is music, my body becomes freed from the tyranny of the walk, and the ground doesn’t seem so daunting anymore. Continue reading

Reluctant Advocate

I am not an “Autism Activist” – far from it – so, please do not call me that. Thank you. I do support the work of activists, it is a necessary force when things are woefully wrong and a great deal of vim and vigour is needed to create change for the better. It is just that my natural constitution does not fit well with the vivacity required for effective activism. Sometimes, though, I do engage in advocacy. Well, all right, quite often especially of late, but this is not what I deliberately set out to do. I am, first and foremost, an autistic researcher and multi-artist. Unpacking this further, my research interests include (but are not confined to) autism, autistic sensory idiosyncrasies, alternative and elemental empathic resonance, clement spaces of mind and body, and my material practice reflects this research, employing multiple artistic disciplines. I love my research and multi-art practice, and I adore my beloved Lucy Like-a-Charm, the two represent mental, emotional and physical wellbeing and equilibrium to me. Continue reading

Disabled People Have an Ally Problem: They Need to Stop Talking For Us

Important points very clearly put forth. Disabled Leadership can and must happen, but first, the ground needs to be laid. And this article lays it down very well. Read and learn!

Crutches and Spice

My mom and I were in the store when it happened. It wasn’t the first time and it wouldn’t be the last, unfortunately. It was a common occurrence, “par for the course” as they say. An acquaintance of my mother (my mom’s real friends know better) had walked over to us and started a conversation with us. Just normal things until she switched the conversation to kids, she looked and my mother and asked “what subject does she like most in school?” Despite standing right beside my mother, despite having been introduced to me by my mother, despite the fact I had nodded quite attentively to what she had yammered on about, she decided to ignore my presence and address the question to my mother. For most abled people, this may seem like a momentary slip up in decorum, but for disabled people this is all to familiar: proximity to…

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