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!

COVID19: zoom-boom

Zoom

My friend Maxfield Sparrow, autistic advocate, activist, writer, poet, musician and all time amazing person, wrote this article: “Zoom Fatigue: A Taste of the Autistic Experience“.

Here are some really excellent points from Max Sparrow. All true. For me, apart from already struggling with the things Max has pointed out, Zoom / Skype meetings are still the lesser of two terrible evils called “meetings”. In-person meetings mean, for me, sensory overload and risk of infection each and every time. Hypersensitivity + immunocompromised = every activity is a careful choice. Each time I attend a work-related meeting or event, or even a social gathering, I have serious choices to make. Either I choose to go by public transport and end up at the meeting bedraggled, sweaty, fearful, anxious and already completely drained, or I spend precious money on hire car and get there with some part of my brain and physical function still intact. Then, during the meeting or social gathering, I endure sensory overload from the built environment, plus sometimes distracting gossip and irrelevant chatter, and I am still struggling to grasp the essentials of the conversations. In-person meetings also tend to go on for lengths of time that to me seem like ‘forever’, because non-autistics love congregating. Not only am I being sensorially bombarded and physically depleted in the most wasteful way (i.e. spending more than is needed, with no gainful returns), my anxiety is compounded in stretto crescendo because I have no idea when this nightmare is going to end. The time is up, but people are still waffling and laughing and cracking jokes that I do not find funny in the least but just automatically laugh along with because what else am I to do? Whereas, the horror of Zoom meetings tend to end more quickly and people are mostly on-point. I surmise that this is because non-autistic people find Zoom meetings dissonant to their natural modus operandi and hence are less inclined to linger? Anyway, for the autistic and those with specific disabilities that put us at disadvantageous positions where functioning is concerned, it’s all about living an exhausting existence because this world system just isn’t built to be the least bit conciliatory towards our modalities. 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: value systems

A close up photo of Lucy's right paw on my left foot.

Together in solitude.

I previously blogged about the travel and commuting travails and choices of the immunocompromised and those with hypersensitivity. The same article about how disease can and does spread is also pertinent to this further elaboration on the same theme. This one is about value systems.

There are many difficult choices that immunocompromised people and those with hypersensitivity face day after day, often for an entire lifetime.

How about the choice of either going to a mass gathering or spending a calm, relaxing time at home with the one entity you love the most in the entire world? Which would you choose? Even without the combination of being immunocompromised and Autistic hyper senses, there is really no competition, is there? But I know that most people do not have anyone they love more than anything else in the world, who is willing and able to be available at all times. Not everyone has a Lucy, and not everyone (in fact very few) loves their pets more than they love human company. So… What do these people do, then, to quell or satiate their yearning for human fellowship? Continue reading

inclement space

This has stuck in my mind for a long time. A bobbing piece of driftwood, overwhelmed by the rush of events immediately afterwards, meekly staying afloat in the COVID19 tsunami that hit us all. I wrote the below ‘memory note’ a month ago but never published it till now.

I met two friends today for a quick afternoon catch up at the National Gallery. Of course, I asked them to please check out my installation, Clement Space. We had coffee later at the Courtyard Cafe, where I made some notes from their reflections and opinions on Clement Space. My friends are psychologists, and it was valuable to hear their views. In this current clime of wariness between practitioners and actual autistic persons, I am glad to say I trust my friends as allies, and I will not hesitate to refer people seeking help and support for Autism-related issues.

After my friends left, I decided to pop back into Clement Space to do a bit of observation. A group of young people were occupying the beanbags, chatting and taking photographs. They weren’t rowdy, so I just hung around and did my own photography. After the young people left, an elderly couple in wheelchairs being pushed by two young ladies entered. I smiled and welcomed them inside. I began to explain the space, but the young ladies just parked the elderly couple in an awkward position – one in front of the other – and bounced off into the other side of the room for ‘selfies’ and ‘we-fies’, chattering animatedly. I tried to engage the elderly couple, but they looked uncomfortable and did not respond. They could not talk to each other because of the positions in which their wheelchairs were locked, so they just sat there, blank expressions like concrete slabs of porous vexation, their silence louder than the excited voices of their two helpers.

I could not bear the heaviness that had entered and filled the room. I had to leave behind that grating juxtaposition, the deliberate mental and physical detachment that played out before me: stoic discomfort against chirpy elation, helplessness contrasting starkly with the buzzing activity created by the two mobile phones and their owners. The intensity of the ableism and deliberate cruel exclusion was too much for my autistic elemental empathy to bear. My heart was already shredding.

Terribly sad. I am not yet sure how to process it all. It was not clement in my beloved Clement Space at all.

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

justice & equality

CalMontgomeryTweet
Something struck me this morning when going through my Twitter feed during breakfast. No, I did not choke on my fish and chips.
It was this Tweet by Cal Montgomery:
Cal refers to Autism$peaks’ ‘new’ campaign about “kindness”. I won’t give A$ more exposure in my space, so go check out the Twittersphere and Facey if you want to know what that vile organisation is up to now.
Here in Singapore, this statement by Cal Montgomery rings true too for Autistic and other disabled persons. Being kind to us PwDs is ok, I guess even most welcome, but what we want and need are justice and equity.
Remember our National Pledge? I grew up reciting it and believing in it. OK, put it down to naivety, but I still carry some hope anyway.
 
“… based on JUSTICE and EQUALITY“… this should apply to the disabled too, shouldn’t it?
We are also Citizens of Singapore.

dogs and disability advocacy

TEDx 2018

… with Lucy at TEDx 2018, Enabling Village.

It was good to read this article today in Mothership by my friend Cassandra Chiu about her experiences as the first female guide dog handler in Singapore, and the first (and still the only really effective) guide dog advocate in Singapore who has managed to herald in a new chapter of awareness, acceptance (albeit tentative) and even legislation for public access.

Yet, I still remember the huge fiasco at Ngee Ann City which attracted so much nasty criticism against Cassandra. I was in Sydney at the time, closely following Cassandra and Esme on their social media. I read with disgust the sick and heartless comments made against Cassandra, some grossly indecent and personal, and others just parochial, low-level jibes all too common among the average stubbornly uninformed Singaporean keyboard warriors that populate social media spaces. Even radio deejays got in on the act, calling her an “a**hole” on air. Yes, the radio station was fined but not for disability discrimination, mind you, the penalty was merely for using a censored word. Oh, and various online news articles seemed to delight in the “b*tch” word, probably because the half-baked ‘journalists’ just did not have the vocabulary to do better than that.

Continue reading

imperilment

Autism Grand Circus

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. Continue reading

finale – SYNC Day 5

Day 5 of the SYNC programme came and went. The going was at times ponderous, because the body was weak and felt like a sack of potatoes, trudging, groaning, creaking and sighing. But I was a tad sad that time had passed so quickly.

I did not bring Lucy, because I had a dinner appointment later that day, and the long hours would be too much for her. But I missed her terribly – it was visibly hard for me to get through the day without her. Our programme coach and instructor remarked that the difference in me was obvious.

There was much learning, pondering and reflecting – but I will not delve into that here. These little snippets are sensory-focused, they are about my sensory experiences of SYNC.

Here are the few photos I took on Friday. No Lucy, so not much inspiration left.

Food. There was a lot of food. Thanks to Maureen and the kind folk from Very Special Arts (VSA). One artist brought their retired guide dog – she is a lovely sweetheart, but such a huge contrast from Lucy’s still, quiet, regal poise. There was a bit of to-ing and fro-ing settling the dog down, and occasional froufrou noises generally made by the owner telling the dog to calm down, which actually stirred the air so much that it had the opposite effect on the poor dog. Methinks some basic dog handling 101 (training) is needed here, for the human, not the dog. At one moment, I walked by and the darling dog got out from her ‘tuck’ position under the table, sat on my feet and leaned resolutely against me, refusing to budge. Anyone who understands some basic doggy body language would know what that meant. My heart goes out to the dog each time I see her. But the smell… I cannot deal with stinky dogs. So very very sorry, darling.

I was a little sad that the week went by so quickly, even though I was already exhausted right at the beginning, and nearly fainted from fatigue twice on Friday afternoon.

Enabling Village is a beautiful place – despite its tacky and almost inappropriately ableist name. We were welcomed every morning by the friendly security people – especially Lucy, which is a marked difference from most other places in Singapore. When I arrived on Friday without Lucy, the lovely men asked me where she was and why I didn’t bring her. One of them whipped out their mobile phone and showed me the photograph that he’d taken of Lucy the day before, on Thursday. They kept saying how beautiful she is, and how still, calm and gentle. I should come here more often with Lucy, perhaps?

The village is a strange place, in other ways, though. Heavy doors make it difficult, if not impossible, for people in wheelchairs to get through on their own. Mirrors in the ladies’ toilet are positioned so high that people in wheelchairs can only see half their reflections. There is no soap dispenser in the disability toilet – do they think that disabled people don’t need to use soap to wash their hands? There are no electric outlets in the training room – how do they expect disabled people with electronic devices to charge their equipment when using the training rooms for long periods of time? And the big bugbear I have? There is no quiet or calm room for people with disabilities – only a “carer’s pod” for carers!!! Isn’t this place for and about people with disabilities?

Sigh.

Nevertheless, having something like Enabling Village at all is a big step in the right direction for Singapore, I guess, though it also shows very starkly that we really do have a very long way more to go.