This morning, the Birthday Book 2020 arrived. Even though I don’t get a single cent of royalties from this book, I am glad to have had the opportunity to contribute to this collection, and I chose a topic that is important to me: disability. I’m allowed to share my own essay in my networks, and so here it is. But before you read the piece, please check out my Facebook post for some background information, and do please join us at the launch if you can. Thank you!
And here is the short essay:
Seeing Singapore Clearly through the Eyes of Disability – Dawn-joy Leong First published in The Birthday Book 20/20: Seeing Clearly edited by Selina Chong and Chua Jun Yan (Singapore: The Birthday Collective, 2020).
I was born in the year of Singapore’s independence. My childhood memories were filtered through the lenses of my immediate world. To me, Singapore was a small, brave country with a firm but capable government dedicated to creating better lives for citizens.
My parents had friends from diverse backgrounds and I was taught to embrace diversity. Father, a dental surgeon, often saw patients who could not afford to pay for treatment. Out of gratitude, they brought him whatever they had: home- baked cakes and food, eggs from their kampung chickens and even the occasional live fowl. Mother was a teacher, and she used to give extra lessons to students who were floundering and unable to afford private tuition. I remember mother bringing me along during some of her home visits, armed with books, stationery and food for the students and their families.
I lived a life of relative privilege, but my parents inculcated in me a sense of civic duty. They taught me to view everyone with compassion and respect. I also firmly believed in our National Pledge’s commitment to “justice and equality”. Despite being labeled as “eccentric”, I enjoyed a healthy social life, and employment was not an issue. Unaffected by discrimination or injustice, I naively believed there wasn’t any in Singapore.
Then I found out at the age of forty-two, while pursuing an M.Phil in music composition at the University of Hong Kong, that I am Autistic. After Hong Kong, I received a Ph.D scholarship at the University of New South Wales, Australia. I openly and proudly identified as Autistic, using the Identity-First language preferred by most Autistic people globally. I acquired a psychiatric assistance dog, Lucy, for my sensory anxiety, with the legal right to have her with me everywhere I went. I helped to found an Autism Research Group comprising autistic and non-autistic members across different disciplines. I was awarded my school’s “Dean’s Award for Excellence in Research”, an accolade given to one top PhD candidate per year.
It was only upon returning to Singapore, proudly identifying as Autistic, that my erstwhile gentle and salubrious world cracked open to a harsh reality. In late 2016, Lucy and I made an exciting journey to Singapore, traveling in-cabin together for the first time. My elation quickly fizzled away when I stepped out of Changi and found that Lucy was not welcome in most places. Assistance dogs for the disabled have existed for many decades, yet most Singaporeans – including those who work in the field of disability – had never heard of them, apart from Guide Dogs for the blind.
The stability of full-time employment eluded me. Non-disabled people claiming to be disability experts corrected me in my use of self-identifying terminology, as if they knew better. When I asked for an honorarium to speak at events, I was told variously that I should be grateful for the “exposure”, or that I should work for the benefit of my “own community”, or that experienced artists should give talks without payment to”‘inspire” young people.
Strangely enough, these people were paid to do their jobs in whatever enterprise they represented. Here was my reply: I did engage in volunteer work. For example, I was and am a Board Member of the Disabled People’s Association. But it is my right – and not someone else’s – to decide to whom I offer my time, energy and expertise. Disabled people have higher bills to pay just to exist. How are we to do so if all we ever did was volunteer work?
Where are the voices of those who are actually disabled in this cacophony of “awareness” and “inclusion”? Disabled leadership is not about exclusive power or taking away jobs from the non-disabled, but rather having a dignified place at the table where our voices – personal and professional – may be valued alongside our non-disabled peers.
My story does not end in tragedy and hopelessness. After two years of knocking repeatedly at the nebulous “glass ceiling”, I decided that the way forward was self-employment. I met disabled and non-disabled people who were sincere and committed to the goal of equity and progress and unafraid to step into uncharted ground. These included university professors, young researchers, representatives of organisations, and people with diverse disabilities joining together to widen horizons beyond old models of charity.
In 2019, I co-founded the Disabled Artists’ Collective, a pan-disability group of freelance artists. I began collaborating with theatre producer-director Peter Sau, a pioneer in theatre practice with disabled artists. I helmed Singapore’s first disabled-led artist residency at library@orchard, featuring three neurodivergent artists from the Disabled Artists’ Collective. In June, I was one of two Autistic Plenary Speakers at the Asia Pacific Autism Conference 2019, marking the first time actual Autistic persons were represented prominently in a major autism event in Singapore.
In 2020, six members of the Disabled Artists’ Collective performed in a groundbreaking promenade theatre show, “Something About Home”. It was Singapore’s first fully accessible and inclusive mainstream professional production featuring disabled artists, but not limited to the arts and disability platform. The National Gallery also commissioned my work, Clement Space, a calm room based on my research in Autism, designed from within the Autistic paradigm.
As a disabled person, I see Singapore more clearly now than ever before. Insecurity, ignorance and exploitation prevail, but there is also sincere intent, commitment, and vast potential. I wish for a Singapore where the disabled and non-disabled have equal rights to stand together as “one united nation, based on justice and equality”.
Here is my raison d’être:
“It is not my purpose to ‘fix’ what is ‘broken’, but to empower beauty in the vulnerable and unseen.” Scheherazade’s Sea, 2010.
To order the book, please head to the Birthday Collective’s website. They’re offering a 10% discount for pre-launch orders (online launch happening 22 August this Saturday!). ** I don’t earn a single cent of royalties but do please support this good work!
Autistic focus is sometimes looked upon as social impairment, but it is a quality that has, throughout human history, lifted up and pushed forward human progress. I’m still chewing over this topic… maybe someday more researchers will rise up and provide clarity to this important trajectory. For now, I contribute in my small way by persevering.
It’s been more than a month since I wrote my response to the terribly biased and poorly researched article in Spectrum on autistic researchers. Since then, I’ve not stopped ‘going on’ about the subject because I feel a gross injustice has been done – in fact it is a multidimensional injustice. But I’ve been told to stop, even by autistic people, because I am passionate about a topic that most people do not understand and/or abuse, a subject that has been shamelessly mistreated and exploited, resulting in a great deal of hurt and damage to autistic people, as well as to autistic researchers who are actually researching this connection. Yes, I am talking about Animals and Autism. I already know one autistic researcher who has been deeply wounded by this article. The root of the problem is ignorance. This topic has been hijacked by shameless ignoramus, and the majority of…
This article was brought to my attention by an Autistic friend last night. The title sounded most promising: “Meet the autistic scientists redefining autism research”. However, I was disappointed to find the narrow, prejudiced focus and disrespectful, superficial treatment of the subject matter. If the author’s purpose was to amplify and highlight Autistic researchers studying autism in a positive way, they have failed to include a number of prominent Autistic autism researchers in the piece, and this exclusion indicates either a lack of thorough understanding of the subject matter or a deliberate choice of bias, or perhaps a combination of both.
Before I continue, I would like to make clear that this is a blog post, not an academic paper, thus I am writing in direct and pressingly immediate response to an article that has caused me some considerable mental trauma such that I have been unable to sleep all night. Nevertheless, I am also an Autism Researcher, part of the “community” mentioned in the article of actual Autistic researchers investigating autism from multiple perspectives, and I personally know a few of the researchers mentioned in this article, whose work I regard highly.
Autistic minds perceive and respond to the world in markedly different ways from the neuronormative, and even often from the neurodivergent non-autistic. In many cases, the ways in which autistics process and react to information and stimuli add unique multidimensionality to research, discovery and invention in all fields of study and practice.
The article completely misses the point of the richness of Autistic contribution to autism research, by opening with just one autistic researcher’s alleged reaction to the “great apes” and quoting that researcher, Monique Botha, as saying such associations are “nauseating”, thus insinuating that this has added to the mental health problems of autistic people. (I suspect poor journalism to be at fault here, from my experience of being misquoted by many a sloppy journalist). There was also derisive mention of robots, without in-depth consideration of the topic. The sweeping statement, describing the associations between the study of animals, robots and autism as “ugly parallels to apes and robots”, reflects a pathetic lack of knowledge about the actual work of Autistic researchers in these areas, which is saddening at best in an article dedicated to promoting Autistic researchers, and at worst adding to the mental health burdens of Autistic people by further stigmatising the eclecticism of the Autistic realm.
Here is what Dr. Dawn Prince-Hughes, respected Autistic primatologist, ethologist and anthropologist wrote in the comments section of this article:
I am the autistic researcher who, after years of rejection by neurotypicals, found myself under the connecting tutelage of captive gorillas and used my experiences with them to revolutionize how we see the Spectrum. As I have made clear in all my groundbreaking writings, it is speciesist to imply that the apes who taught me to be social — who have indeed helped my spectrum people in this way — are an insult to be compared to. If there is indeed no shame in being neurodivergent then we should appraise animals under a neurodivergent rubric rather than recoiling at their differences. Your attitude shows that such prejudice is alive and well….and ugly…despite the surface assertions of your article.
The following is my own response to the article, made nine hours ago, a time when I should have been tucking my beloved Lucy into bed (she did bark to tell me it was time for our bedtime ritual, but I was too busy typing out my comment because I was so distressed by this article that my unreliable humanity failed Lucy yet once again).
I am Autistic, I am also an autism and neurodiversity researcher, as well as a multi-art practitioner. I quoted Dawn Prince-Hughes work extensively in my PhD: “Scheherazade’s Sea – autism, parallel embodiment and elemental empathy” (2016). My research focuses on alternative empathic connectivity intrinsic in the autism paradigm. Prince-Hughes’ work has been pivotal to my research into a non-worded, acutely sensorial empathic resonance with the material universe that many (though obviously not all) Autistic people possess. I, like Prince-Hughes, have learned a great deal about my own humanity as an Autistic human – strengths and failings, rhythms and patterns of perceptivity, richness of sensorial interrelatedness – from observing non-human species. Humans have a great deal to learn from the ones they despise and feel superior to, mostly from imbalanced and uninformed assumptions. Neurotypicals view autistics as inferior because our communicative rhythms and patterns differ from the normative – are we not applying the same kind of biases towards animals when we say it is nauseating to be compared with them? Prince-Hughes’ work is groundbreaking, there is not disrespect for the human nor the non-human, her treatment of the subject and her insights could only have been achieved by a penetratingly sensitive Autistic mind. The author of this article has failed miserably to find this precious connection that many Autistic researchers – like Prince-Hughes and myself – have spoken about. As Prince-Hughes articulated in her comment, such thinking is not only speciesist but ignorant of the multidimensionality of Autistic researchers study in autism. The realm of Autism is a complex and beautiful one, and should be studied and respected from more than just the obsessively human-centric viewpoint. I, for one, am not ashamed to learn from non-speaking humans and non-speaking non-humans. I don’t study the great apes, but my research in Autism has found much inspiration from studying canine communication. Indeed, I agree with Dawn Prince-Hughes: “we should appraise animals under a neurodivergent rubric rather than recoiling at their differences”!
Apart from obviously not having read the groundbreaking work of Dr. Prince-Hughes, (and my own more humble PhD dissertation), the author of the article presents a view that is heavily biased and obsessively human-centric, ironically in so doing contributing to the stigmatisation of Autistic people that the author claims to be trying to dispel. Does the author even know that there are now many young Autistic researchers studying autism in relation to animals and the elemental empathic interconnectivity? This article has, in a few ill-chosen words, made a mockery of the valuable trajectories being explored by these Autistic brilliant minds.
Instead of viewing animals and robots as “nauseating” insults to our humanity, why not see them as potentially powerful channels or windows into richer tapestries of learning, discovery and connectivity? Is our human-centric world the only sentient one (we know by now that it is not), or perhaps the only important one (again, anyone with any knowledge of current animal science would know that it is not)? Of course, I am incensed when non-autistic ‘experts’ lump autistics together with animals, because their assertions lack any deep and thorough understanding of the autistic paradigm and that of animals. Of course, I am traumatised when non-autistic ‘experts’ try to use robots to teach autistic children about normative social skills (not autistic social skills, mind you, because we do indeed have our own social system) because these ‘experts’ lack empathic understanding of both autism and robotics. When one is face to face with disrespectful lack of true expertise wanting to dominate one’s own domain, of course, one’s reaction is that of vigorous and vehement rejection!
My issue with the animal-Autistic or robot-Autistic comparisons lies firmly in the ways in which these are made and presented – by non-Autistics. If the subject matter was researched and interpreted by Autistic researchers, the fundamental premises and approaches would be completely different. Based on what we already know about the ways in which Autistic brains perceive, process and respond to information, it is perfectly logical to expect that the Autistic researcher, if their passion was to study animals or robots, would have insights and draw associations that differ from the normative view. This is apparent in the groundbreaking work of Autistic animal behaviour specialists, Temple Grandin and Dawn Prince-Hughes. While I disagree with much of Temple Grandin’s outdated views of autism, her oft-quoted phrase rings true and clear to me: “Animals make us human.” (Bear in mind that although Grandin opened the doors to autistic representation, she nevertheless belongs to a different time and era, and her views have understandably been surpassed in the area of autism research and understanding.) Dawn Prince-Hughes’ work with gorillas is much richer and multi-textured, with a lot more sensitivity and tenderness than Grandin’s interpretation of cattle and horses. In fact, Prince-Hughes’ book, “Songs of the Gorilla Nation” is one of the most beautiful, empathic and resonant scientific discourses I have ever read. I have drawn from both Grandin and Prince-Hughes for my own study, and much of my PhD dissertation about autism, parallel embodiment and elemental empathy was inspired by my own connection with Lucy, my Greyhound. The more I observed Lucy and her interaction with me and the world, the more I became interested in studying canine communication, and the more I found resonance in my own Autistic realm. When I refer to Lucy as my muse, it is not from the feel-good anthropomorphic impulse so common in neuronormative ‘pet lovers’, but I use that description factually and literally, she is my source of scientific and artistic inspiration. I have learned far more about myself, my Autistic domain, and my humanity from Lucy than I have from any other human.
As for robots, although robotics is not my area of expertise by far, I am nevertheless fascinated by them, and I have no objections at all about using robots as one of the many ways in which to learn. I once took part in an experiment where I was alone in a strange room with a female robot (the Geminoid F) that I had never met before. Strange room, strange robot. I remember feeling far more at ease in the company of the robot than when I had to socialise with all the other strange humans taking part in the same experiment. Most others’ reactions were the opposite of mine. They described their experiences as “surreal” and “creepy”. I believe that if Autistic researchers were leading studies into the robot-Autistic connection, using robots as a conduit to learning, an entirely different space would be opened up for energetic discourse and discovery.
Once again, yet another human-obsessed, poorly researched article sadly lacking in empathic resonance has succeeded in adding to the trauma of Autistic people, despite claiming todo otherwise. Such a wasted opportunity. Perhaps Spectrum should pay someone like myself to write better features if Spectrum is truly interested in advancing the cause of Autistics. You see, Autistic people are human, and humanity is eclectic in the ways in which we exist. Is the human mind so small, so restricted and lacking in creative imagination that it can only understand and be uplifted by that which exists in the human realm alone? Is it not time that we look deeper, wider, higher and embrace differences – all differences – with the wonderment and respect that it deserves? Our human world is in a great deal of trouble and subjected to pernicious destruction because humans have for far too long – in all of human history, actually – focused far too overtly on our own existence to the exclusion and detriment of everything else on this earth. If we truly wish to heal the ills that we have wrought, we need to stop navel-gazing and begin to embrace what is outside of our tiny little domains.
Postscript 15 June 2020: The conversation is ongoing, which is healthy and I hope will provide new angles and trajectories to follow.
Monique Botha has written a lengthy response, so please check it out (beneath the article itself).
As I quite clearly said in my blog post: I, too, take umbrage at the way (mostly non-autistic) ‘experts’ use animals and robots as comparisons etc with Autistics, my reason is, like you, these comparisons emerge from an offensively erroneous perspective. However, researchers – autistic and non-autistic alike – need to be openminded enough to explore these connections, from the Autistic paradigm. Dawn Prince-Hughes’ work, and mine too, present powerful and valid angles which are important to autism studies, and there is a wealth of richness to be gleaned from here. In fact, if one is properly apprised of such Autistic driven work, one would discover that our Autistic driven research present cogent challenges to the other kinds of animal / robot research that we abhor. It is not as constructive to only present what is wrong with the approaches to one subject, as if one were to point out what is wrong plus present what is right, as a solution to the wrong. The problem with (mostly non-autistic) perspectives is – as you may already have been made aware of via the current article’s poor research and poor journalism – pursuing one thread without insisting on a multi-dimensional context, a lot of harmful misinformation and misunderstanding is propagated. Again, in the case of this article, the author has failed to do their homework. In fact, if you read Michelle Dawson’s Twitter comment on this article, you would find that it has not only upset Dawn Prince-Hughes and myself.
On an aside, I look forward to reading more of you(r) work, and perhaps you might have already added this other dimension to it, which I am unaware of.
THIS is why Nothing About Us Without Us is so crucial. Whether autistic or not, when presenting information, one needs to engage in thorough research from as many angles as are available. Of course I don’t wish to be compared in a derogatory way with anything at all – humans, animals or robots alike. However, because I know what I know, I would also qualify that with the kind of research that makes such comparisons from a respectful and even beautifully accurate and cogent perspective. Good research cannot make one assertion based on one dimension of the topic alone, it should thoroughly inspect and include other dimensions. In this case, yes, it is a travesty to be comparing Autistics in an insulting way with animals and robots. But researchers – whether autistic or not – addressing this problem should thus also present the ways in which these connections are being made with penetrating and groundbreaking insights that respectfully present new dimensions to the topic, and also emphasises the need for actual Autistic researchers in the field of autism study. The latter are cogent solutions and answers to the former conundrum. Why are researchers not even exploring or acknowledging this? Too much intense focus on humans alone may not be the answer to our human problems. Autistic people live in a wonderfully multi textured world. We should learn to discover this. Human-centricity, human navel gazing, will not solve humanity’s problems – as we can see from thousands of years of human history.
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.
Originally posted on bunnyhopscotch: I like what D.J. Savarese said about Autistic people living in a supportive community, with interdependence as a model, and not the too-oft lauded “independence”. In this article in Psychology Today, D.J. is quoted saying: Interdependence…
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 […]
An autistic friend recently supplied me with this link, a tongue-in-cheek “New Age Bullshit Generator“, which generates a slew of pseudoscientific propositions for any kind of purpose you wish to apply it to. We were discussing the topic of snake-oil and pseudoscience, and its prevalence in what I call The Grand Autism Circus.
On the one hand, the New Age Bullshit Generator is an exercise of ironic humour (and very clever programming), but one should not ignore the presence of a grave, sombre message that lies beneath. Pseudoscience permeates the autism world, which is a fierce and aggressive circus that does not exist in the realm of any other disability in today’s context.
We are now in the 21st century, yet snake-oil cures still abound and vigorously thrive in the autism world. From MMS / CD Water (which is basically bleach solution), ASEA (saline mixture), to Chelation and…
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.
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).
All in, it was a resounding success, one which Singapore can be proud of. Not that we have ‘arrived’ yet, but that we have been able to learn and achieve this much progressive thinking, inclusivity and respectful facilitation – all within such a short span of time.
The folks at ARC (Autism Resource Centre) were amazing! So much hard work and coordination of this mega event, and everything went excellently well, given the monumental task at hand.
1,800 people registered for this event. The largest of its kind ever in Singapore, and perhaps even in the entire Asia Pacfic region.
“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.