Seeing Clearly

Here’s a post copied from my ‘official’ website. It is a piece that I wrote for the Birthday Book 20/20.


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!

What’s the fuss about animals and autism?

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 those who are offended in the process are reacting also out of ignorance, and the proverbial baby gets thrown out with the dirty bath water. It is an important ‘baby’, and one that I firmly believe will shed even more stunning brilliance to autism research, if only it were more understood and pursued further.

I am no expert myself. I wish I could be. If I had time and finances on my side, I would embark on another PhD in this area. Sadly (for me), all I do have now is this little tiny glimpse. Nevertheless, I will not stop saying what I am compelled to say. I will continue to encourage young autistic researchers who are interested to pursue their dreams in this field. If you have seen something so amazingly exquisite, something that has changed you from the very core, then you will not cease to speak about it. Someday, the world may see what we see. For now, it is a lonely thing to be a minority within a minority. The passage below is taken from my PhD dissertation, and can be found in the chapter Space of Mind.

Continue reading

meds & bets

Growing up, I always had doctors come to the house – we called them ‘Uncle’ because they were dad’s close friends. Nowadays, each time I go to see my favourite GP, I miss those days when doctors did house visits. It’s a literal nightmare at the clinic, teeming with germy humans (well, ok, why else would they be there, right?), many have no idea how to keep their juices to themselves. There was one lady today coughing and hacking and making all the noises appropriate for whatever she was suffering from. Horrifying, even without a global pandemic hovering above, but in the context of COVID19, I shuddered. Thank goodness our government has made wearing masks mandatory, with strict penalties for non-compliance. One occasion where I am glad compliance was enforced without exceptions, even though I am not keen on compliance much, this is imperative. Throughout my adult life – as soon as the ‘Uncle’ doctors retired and no longer came to our house with their little black leather bag of mysterious potions and sharp needles – I have dreaded going to the GP’s clinic. I cringe and agonise about what horrible stuff I could catch there, even if I didn’t present with that particular kind of ‘sick’ at the beginning. It is almost without exception a chaotic mess of humans in various states of un-wellness with human droplets and other infection carrying fluids being happily and sometimes lavishly shared, like a twisted, eerie unholy communion.

Continue reading

voicing the silent roaring

I’ve been doing a sort of big-ish battle with my autoimmune condition in the past three days. The complete works in quite a bit of horrific glory – if you have any kind of vasculitis you’d know what I’m talking about, but if you don’t never mind. This post is not about my wonderful physical pain. Ironically, it’s about my ‘voice’ – in a multidimensional way – just as I am riddled with so many aphthous ulcers that I am running a fever and unable to eat or speak, let alone sing.

I posted up this song of mine today on my Facebook. About my journey to Beingness. Of all my songs recorded during that period (1999-2000), this one always brings me to tears, and the narrative grows and grows every single day. I want it only to end when I am no more on earth. Being Me is a lifelong process. And the reason I am in tears each time is because I am overwhelmed with gratitude towards all those – in an almost mystical and magical serendipitous way – who have contributed to my Becoming. Continue reading

limitations – yours or mine?

A friend of mine posted this video on her Facebook, and I’ve reposted it on a few of my pages. My friend, a Professor in an Australian university, has worked extensively with people with intellectual disability, and she is currently my personal mentor for an inclusive research project I am undertaking together with a talented artist with Down Syndrome. In fact, it was my friend who opened my mind and heart to the wonderful realm of inclusive research, that serendipitous day, in my first month in UNSW Sydney, when I walked into her workshop on the topic. I was literally in awe, and this experience contributed significantly to the course that I would take along my professional and personal journey henceforth.

The video my friend posted expresses my own thoughts and experiences very succinctly.

We, the disabled, are constantly under-estimated, stigmatised and marginalised by society, and that includes so many supposed ‘experts’ in the wide field of disability support. Narrowing it down to neurodivergence, I am finding it increasingly uncomfortable speaking vehemently about ‘inclusion’ and ‘equity’, even when I am among fellow disabled persons, because one segment of our ‘disabled community’ is consistently missing: people with intellectual disability. Where are their voices? Do they not also have the same rights as all other disabled people who are rising up and advocating for fair access and inclusion? Continue reading

COVID19: rights

Many disabled people have been speaking out in the midst of the outpouring of personal opinions and complaints etc surrounding the various stay-home or isolation regulations in place around the world because of COVID19.

As a disabled person myself, Autistic and immunocompromised, I empathise with most of the responses from the disabled. Here is one:

 

Many disabled people live very isolated lives. Not by choice but by ableist design. Continue reading

COVID19: travel restrictions

The above is one of a series of three videos I created for the Big Anxiety Festival in Sydney, 2017, a wryly humorous explication of my sensory experiences traveling around Sydney in public buses. But what my videos do not speak about is the seriously perilous danger that I have to contend with when commuting by public transport.

I was reading this article in the morning over breakfast and a deluge of thoughts came rushing in. The article explains how just one cough can spread deadly germs to many, because the germs can linger in the atmosphere even long after the person who coughed has left the scene.

Here is the unraveling of one of the many threads. It is about travel and restrictions, but not the kind you might know. Continue reading

outsider

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 now. It seems that everyone wants to ‘own’ Autism, from the Autism Mom bemoaning her sad fate at having given birth to an incorrigible creature, to the big money-spinners in Hollywood, the politicians jumping into the fray, and the shrill voices of Autistic advocates struggling to be heard above the din, chanting “Nothing About Us Without Us!” as valiantly as possible (given that most Autistics do not function well in noisy, crowded spaces, the latter are doing their level best as it is, but more often than not, being ignored  or vilified).

Autism has become big money. In The Grand Autism Circus, that is. Yet the revenue that filters down (if at all) to the actually Autistic is pathetically insufficient. Most of it goes to programmes that try to make Autistics appear as non-autistic as possible, “indistinguishable from their (neuronormative) peers”.

The problem with media interest is that it is a two-edged sword. And a jagged one that can create quite a bit of mess.

Reading Luterman’s review of “The Outsider” reminds me starkly of my own recent brush with (entertainment) media.

So, some local film company wanted to make a series about an autistic female character with ‘special abilities’. Some IT geek, of course. (Yeah, well, they do exist, they’re among the best paid and most employable ones of us autistics.) A representative of the film company found me online (not difficult at all), and asked if I could be their consultant. They have an actress already, and they wanted me to also follow her and give her advice on portrayal, etc. I was impressed. It was a great gesture – great because it was progress. You see, autistic people are seldom ever consulted about autism by people wanting to represent or portray autism. It’s the non-autistic ‘experts’ on autism that are always asked to give advice, whether paid or free. The parents, the teachers, the psychologists etc. And then, these ‘creatives’ go happily along and portray the autistic protagonists in mangled, tangled, bedraggled and sometimes utterly ridiculous and insulting parodies of the true autistic lived-experience. Pity parties or scornful derision, or monsters with no souls. Take your pick. Now we also have super geniuses thrown into the mix. Wow! Super Powers! Autistic Heroes! (Remember, this is Singapore, where, not long ago, a top university’s School of Medicine website used the word “disease” to describe autism.)

Well, the young people who contacted me were really pleasant. They had big dreams. And, to me, promising progressive mindsets. They were respectful of my authority as an autism professional as well as an autistic with lived-experience. At least that was how they came across to me. However, it all came to nothing after the seniors – people with authority to decide on money matters, that is – came into the picture. I told the young man who was communicating with me: some day, when you are in control of budgeting, if you still have this progressive mindset and you’re not by then swallowed up by the whole nefarious unscrupulous exploitative industry, please contact me. I will be happy to advise you.

Again, da capo ad nauseam. Yet another request for a lot of work but not a single cent of payment. Oh, please, could you do it as a friend? Um, hello, “friend”? I’d never met you before this. Do you know how long a friendship takes to grow and develop? Oh, but we have a psychologist advising for free! Why can’t you? Well, I pointed out that the psychologist – some ‘expert’ in autism I’ve never heard about before – has a full time job in an established autism organisation. That person is paid a decent wage. They can afford to do things for the fun of it, I guess? Besides, whether or not I want to be paid should be my prerogative, not for anyone else to dictate and cajole out of me using bizarre carrots on twisted sticks dangled in front of my affronted face (please, a psychologist???? can’t you at least be more creative?).

Listen, people out there wanting to contact me for yet more freebies. Read this carefully, ok?

I am a freelance consultant. Therein lies a huge difference. Every single committee I am invited to sit in is populated by professionals with full time employment. They get time off from their jobs to attend these meetings, which take place during office hours, so they are paid even while doing unpaid voluntary work. In my case, I have to pay out of my own pocket for every single one of those long, tiring meetings I attend: transport costs, hours spent, and the hidden costs of sensory overload and physical reactivity. Some of these volunteer forays have caused me to almost bankrupt my mental and physical resources, neurotypicals playing mind games, using the autistic as a token of inclusion etc. No matter, I did my volunteer time to the best of my professional and personal capacity, financed by little ol’ me. The time I spend doing freebies cost me much much more than whatever it costs the neuronormative well-paid professionals with the same qualifications that I have. Besides, it adds to their employment portfolio – I get nothing of the sort. Frankly, I am not even interested in worldly recognition. I just want to be paid what I am worth, commensurate with my qualifications and expertise, and the hours of effort I put in. It is respect and justice, plain and simple. But it is what disabled people are not even legally entitled to.

So, if you’re yet another one of those people in social enterprise, or commercial enterprise, and whatever organisation, and you want Dr. Dawn-joy Leong to feature in your sphere as some mark of “inclusion” to tick those boxes called KPI or some other acronym popular in Singapore, please note: I wish to be paid my professional fees. You see, in case you do not know, I worked hard for my qualifications alongside non-autistic people, I did not even ask for any accommodations apart from an assistance dog. And mind you, this was not given to me by my own country. My expertise did not drop down from the benevolent sky like a gorgeous refreshing shower on parched ground. So, you folks wanting to do any autism-related work, and you want to look trendy and progressive, you wish to tick those nice KPI boxes etc, then you will have to pay decently for my advice (note that I did not say “handsomely” just basic decency is required). If you’re not willing to do so, please don’t bother to contact me. Don’t waste your time and mine. Go away. Take your tokenism, bullying, exploitation and whatnot with you. You’re most welcome to come back when you have the budget for respect, justice, equity and true inclusivity. I happily work with those who are genuine about their vision and purpose to work towards true, respectful access and inclusion. Thankfully, there are such people in Singapore. So, be like them.

COVID19: social responsibility in the midst of a pandemic

Warning: this is going to be a very long read, way beyond the normal word count of anything you’ve read in Bunnyhopscotch.

broken-plug

The COVID19 situation is escalating.

Italy is in lock down. The USA is in various conflicting states of panic, fear, apprehension, alarm and denial, depending on who is saying what and where one is situated. In some countries, death tolls are rising because there are just not enough testing and hospital facilities to support the growing influx of infected people. Singapore is doing well only because the government had a good plan, was able to implement this plan with strong authority, and we have top-notch hospital facilities. Even so, a huge surge in cases will put great strain on the system. In the face of such a serious pandemic, there are people who – either due to sheer ignorance about the magnitude of the situation, or simply because of utter selfishness – still flout the rules. Some have lied during contact tracing, turned up at mass gatherings while sick, and many still persist with poor hygiene practices like littering public places with used tissues and clinical masks. Perhaps this heinous behaviour stems from the reassuring recovery rate thus far, and the fact that though a number remain in intensive care, nobody in Singapore has died as yet. But what about the elderly and medically vulnerable?

Actually, herd immunity or protection can be much better achieved if, and only if, the normally healthy could behave responsibly with care and consideration for their immediate and wider communities. If people can find it in their understanding and will to just stay home when feeling unwell, practice social distancing, develop and maintain high standards of personal hygiene, then virulent and aggressive contagion can be more easily contained. A friend mentioned that some poorer Singaporeans simply cannot afford to self-isolate, due to crucial bread-and-butter challenges. Well, yes, all the more reason for those who can do so, to just do it! For the sake of those who cannot and for their own. It’s not rocket science, really, is it? This is how we may build a stronger ‘herd’, by offering other vulnerable people some measure of protection when we simply exercise social responsibility. But humans do not easily understand the conditions of others, do they? It isn’t really Autistic people who ‘lack empathy’, is it? Apart from the ignorant, some humans are simply inconsiderate. So, unfortunately, we cannot trust all humans to behave as they should in any emergency, and therein lies the problem. Continue reading

enfant gâté

Pink

Pretty in Pink

Access. Inclusion. If you are non-disabled what are these terms to you? I mean, how do you perceive and how will you execute or perform “access” and “inclusion”? And would you ask the disabled people that you are claiming to support, how they perceive “access” and “inclusion”? Or would you just go ahead and do whatever you deem best for the disabled people? How do you expect the disabled people under your umbrella of kindness and charity to behave? With gratitude? After all, you are working very hard to provide all these goodies, aren’t you? Surely there ought to be some kind of appreciation?

Are you sure you are not creating a whole breed of disenchanted, frustrated, entitled yet incapacitated enfant gâté, overfed on the sugar and cream of your overflowing charity, and well-trained to be happy as your inspirational-porn stars? You know, those pretty posters, the big-budget to small-budget “inclusivity” shows where comperes talk down at the disabled and the disabled smile happily, thrilled to be part of the grand display?

What if a disabled person, whether by medical, charity or social model, dared to ask for a seat at the table – whichever table they are qualified by worldly standards to sit at – how about perhaps your table? What would you do if they wanted their voice heard on matters pertaining to them and their embodiment as a disabled person? Continue reading