After a year of hard work, we have finally launched our new charity! K9 Assistance (Ltd) Singapore is Singapore’s first and only charity organisation focusing on assistance dogs for the disabled. We are committed to educate, create better understanding, awareness and acceptance, as well as eventually match assistance dogs with disabled people.
In this video, I announced Lucy’s retirement from active duty as my assistance dog. She will continue to share her special joy as K9 Assistance’s Ambassadog!
Sonia has an amazing way with words. It doesn’t need to be a lengthy piece, in fact, her words are so lithe and fluid, yet exquisitely penetrating and precise, that I am left catching my breath at the sharp, deft unlocking of a wealth of unspoken, unworded meaning. And, in an uncanny way, each and every time I am incapable of bringing into the tangible realm what I wish to express, somehow, Sonia’s words will give strong yet delicate voice to the rhythmic humming resonating in my being.
“How rare it is to see people with complex needs just being. Humming is natural, and nothing is dressed-up; this isn’t ‘special needs’ for consumption. There’s no attempt to exoticise or glamorise our being. The camera captures ordinary moments valuing autistic language and expression on our terms.”
This is exactly what first hit me right there at my core, when I first watched the film. It unpacks our meanings, our world, on our terms.
Actually, I watched it three times, each time catching different details and sensory echoes. In fact, I’ve also run it over and over again in the background, allowing different aspects of it to weave in and out of my consciousness, meandering and winding around caverns of sensory subconscious as I engage in different light tasks. I love the clattering sounds, the staccato, the ripples, the appoggiatura and trills, the sudden drop in levels, the pitter patter of rain like crisps dancing inside a foil coated box…
And then, Sonia says this:
“It suddenly strikes me that this film feels like home to me because this is where I began. There’s a circularity in writing this piece for Project Art Works, which underlines its immense importance as an artwork. As a young art therapist, I was employed in a residential setting for adults with complex needs; not knowing that I was myself autistic until very many years later. Since then, I’ve come to recognise aspects of myself in those with more complex needs than my own, but as a younger person I had no way of understanding why I was so drawn to this world. Years of my life have been wasted and lost.”
Wasted and lost! Wasted AND lost! WASTED and lost! Wasted and LOST! These words sound like bells, whose echoes and reverberations fill my chest cavity, pounding against my rib cage. I think of the bells inside Magdelen College Tower on the first of May.
Everything is there, embedded in Sonia’s three words. This world that is so simply presented in the film, a realm so full, so abundant with wonderment.
When I first read Searle’s review, pronouncing it “problematic” without any further explanation, a searing hot rage shot through my core. I was shaking with fury, yet hurt, it brought back horrific wound trauma, I know that kind of dismissal too well, flicking away the rich tapestry of my multi-textured world like crumbs off a table, that neuronormative gesture of disdain so ponderous, so callous, so crude in its garish ignorance.
But then, after the film had played umpteen times like a comforting echo in my senses, I now feel sad. Sad for Searle and those like him, who are unable to access and luxuriate in our world, who stand outside and sweep at crumbs on neuronormative cafe tables, never noticing the flow, the undulating rhythm, the shuddering patterns, and the tiny clicking, chirping sounds the specks make as they fall, fall, fall to the groaning, giggling ground. A tragedy, to me, not to be able to resonate with the richness that is our multidimensional universe. This is the true loss. Yet, do they know of this loss?
Sonia’s words again, in her other article responding to Searle’s review:
“This film speaks to me in my language. This is mysensory world. For me, Illuminating the Wilderness is a rare and beautiful thing, and I feel sorry for those who can’t see it. Our immersive connection to the sensory world can feel vast and expansive – it is beyond words. This is supremely exciting to us, and joyfully fulfilling. It’s why we don’t need to people so much – we have this!”
Yes, we do indeed, and what a wonderful world it is!
Dear Friends, here is my most recent work. A fully digitalised re-arrangement of the original Scheherazade’s Sea, 2010.
Welcome to “Scheherazade’s Sea: stories and songs from a hidden world.”
In the next twenty minutes or so, through video, stories, poetry and songs, you will see, hear and experience tiny reflections from my Autistic world.
The title is inspired by Scheherazade in the ‘Arabian Nights’ folk tales, whose stories to the wicked Sultan helped her survive and saved her life.
My Scheherazade is an Autistic girl, journeying alone through an unkind world, where she encounters confusing twists and turns of lies, betrayal and disappointment. When at last, she begins to embrace and love her unique Autistic self with courage and determination, Scheherazade discovers that her Autistic world, Scheherazade’s Sea, while misunderstood by others, is actually a beautiful one, full of wonderment and hope, a deep and wide ocean alive with infinite possibilities. It is then, that she finds strength within to continue along her journey, bravely embracing her unique Autistic Joy.
“Scheherazade’s Sea: stories and songs from a hidden world” is fully digitalised and revised from its original version, which was performed in Hong Kong in 2010, and The World Stage Design Festival in Cardiff, U.K. in 2013.
Sound engineering by Karen Low (Singapore) Portrait of Scheherazade by Kateryna Fury (USA) Little Duckling narrated by Sumita Majumdar (UK)
Supported by the National Arts Council Singapore & SG Culture Anywhere.
Launched yesterday, “Clement Space @Suwon, 2020” and “An Olfactory Map of Sydney, 2017” is part of a show at the Suwon Art Museum, South Korea. (00:40 – 01:00)
Thank you to Jinseon and everyone in the team who sought me out and connected with me, I’ve had a wonderful working experience with you. Everyone is so kind and polite, a lot for me to learn!
Here is the Korean write up, for those who know the language:
#그것은_무엇을_밝히나#전시#개막 . 수원시립미술관은 아트스페이스 광교에서 9월 22일(화)부터 12월 27일(일)까지 기획전 ≪그것은 무엇을 밝히나≫를 개최합니다. . 이번 전시는 이 세상을 밝히는 근본적인 요소인 ‘빛’에 관한 이야기입니다. . 전시 제목에서 알 수 있듯, 빛을 의미하는 ‘그것은’ 시간의 흐름에 따라 시대와 사회가 공유하는 ‘무엇을’ 어떤 시각과 입장으로 어떻게 ‘밝히나’의 이야기를 담고 있습니다. . ‘1부 : 시공간을 확장하는 빛’에서는 ‘빛’과 시간 공간이 결합하여 나오는 여러 가지 경험들에 관한 탐구와 관점을, . ‘2부 : 사유의 매개로서 빛’에서는 빛에 대한 우리의 시선을 가시적인 세계 너머로 이끌며, . ‘3부 : 공동체 메시지를 전하는 빛’에서는 각각의 고민을 통하여 개인적 상징인 작은 불빛을 이용해 사회적인 현실을 담아냈습니다. . 각 섹션을 통하여 7개국 10명의 작가들이 제안하는 다층적인 빛을 아트스페이스 광교에서 만나볼 수 있습니다. . 현재 수원시립미술관은 현재 수도권 지역 사회적 거리두기 2단계 조치로 코로나19 확산 예방 및 관람객 안전을 위해 상황 진정 시까지 휴관 중이니 온라인으로 ≪그것은 무엇을 밝히나≫ 전시를 만나보세요. .
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.
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.