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.

Take the community spread that happened during just one dinner gathering at Safra Jurong. It’s the biggest cluster thus far, and still growing each day. All the more alarming is that it happened right smack in the midst of serious warnings and contingency plans already put in place. It wasn’t as if people were not forewarned, it wasn’t as if there was no news about the other community spreads that happened before this, for example, the conference at the Grand Hyatt and the Chinese medicine shop, or the subsequent church cluster. Right in the midst of all the news about control measures, government warnings about non-essential large gatherings, surgical mask and sanitiser shortages, and the grand toilet paper fiasco, these people somehow thought it was still a great idea to go ahead with a massive gala dinner, replete with karaoke-style singing. My skin crawls at the thought of people spewing infected saliva into the same microphone (kissing distance, mind you) and then passing it along in an unholy communion ritual, spreading vicious coronavirus in an enclosed air-conditioned room containing over two hundred human bodies. Oh, and did I mention sharing food too?

One question I am asking is, WHY? Why did they still go ahead with the Jurong dinner?

Why can’t people perceive the reality of the serious threat not only to their own wellbeing but more importantly to that of all others around them? Why do people still insist on continuing with large mass gatherings? Why do people grumble about stay-home orders? Why do people who are unwell still wander around spreading infection willy nilly without care for others? And then there are people who panic and fight over toilet paper?

Some commentaries here have blamed the Singapore government for not sending out clear enough signals, or for not banning mass gatherings and shutting down activities all over our tiny little country. Frankly, I have had enough of this ‘sheep’ mentality that seems to prevail in my homeland. Have we become so inept at individual decision-making, is logical thinking, due consideration for others, and personal responsibility so foreign a concept among us that we rely this much on our government to tell us what to do every little inch of the way? We’ve been provided guidelines already, we’ve even been told how exactly to wash our hands in copious announcements and with nice little cartoons and songs, etc. We’ve been told about social distancing over and over again. Some errant people were in the news, caught flouting the current COVID19 regulations. One man was unceremoniously sent back to China for flouting home-quarantine, their permanent resident status taken away, and a couple was arrested and charged, with quite a serious penalty awaiting them. Isn’t this strong enough as signals go? To be honest, it’s the behaviour of my fellow countryfolk that cause a great deal of anxiety for me, far more than the COVID19 disease itself. I don’t blame the government at all, they are doing their level best, and they’re even footing the bill for all citizens affected. What more should we demand, without making any effort of our own?

Seems as if it’s every healthy person for themselves. Every ignorant, selfish healthy person, that is. Those who have no care for social responsibility, for the weak, vulnerable and elderly. Well, there are also many good people, who just follow along, against their own inner voice, against better judgment, because they don’t want to embarrass themselves or to offend others. I’ve been told by a friend via WhatsApp that he feels “socially obliged” to attend a wedding fiesta happening this very weekend. He is going to expose himself knowingly to serious danger – he isn’t uneducated, he reads the news, foreign and local – just because of a social obligation? What is happening, Singapore? So, this soon-to-be-married couple planned their wedding ages ago, I get it. The amount of money poured into wedding dinners can be staggering, but those costs are usually recouped by generous cash gifts from numerous guests, with cash to spare. So maybe this is it? Here in Asia, especially among the ethnic Chinese, we’re very practical in that way, and cash is the standard gift in any occasion, from funerals to weddings and anything else in-between. Did the couple sign up for a grand dinner that they could not pay for in advance? Maybe. Probably. Are the venue and caterer unwilling to agree to a postponement or cancellation? Most established hotels have issued notices saying they are willing to negotiate because of COVID19. But wait, there’s also church and then a reception, before the grand dinner. What about the church? Can’t the church wise up to the situation and be more considerate and proactive? So, this is going to be another potential ticking time bomb. All in the name of “social obligation”. In the midst of a worldwide pandemic, these inhabitants of some kind of surreal LaLaLand are still flouncing, lurking, meandering, gyrating and jostling around enclosed spaces, merrily sharing bodily fluids?

Discombobulation. Mind-blowing perplexity. What is going on?!?!?!?!

But wait, you may say, why are you talking about “Social Responsibility? What does an Autistic person know about social responsibility?”

Yeah, remember what the ‘autism experts’ say about us? We’re supposed to be anti-social, aren’t we? Living in our own worlds, not coming out when bidden, only when we feel like it? We’re supposed to be difficult, selfish creatures lacking in social empathy.

Here’s my favourite quote from autism ‘expert’ Bryna Siegel:

It is as if they do not understand or are missing a core aspect of what it is to be human”…

Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to.

Bryna Siegel quote

Take a look at the current COVID19 pandemic. Whose world is more distorted now? I speak about my immediate world now, but I doubt things are too vastly different anywhere else. Grown, educated adults in the first world have to be told by health ministries, governments etc, “Wash you hands!” Then they are literally held by their unwashed hands with megaphones in their ears saying, “Practice social distancing!” And what happens anyway? Bumpity bumpity bumpity bump! Off they go, celebrating at karaoke and wedding dinners and what have you. A few days afterwards, it’s in the news. X number of new cases from … ??? … No prizes for correct answers, darlings. No prizes at all. Simple pattern recognition. Sigh.

Dear Ms Siegel, what in your normative world is so enticing for an Autistic person to want to leave their world – a safe, orderly, logical, magical, multidimensional wonderment of elemental connectivity – and join your chaotic, jiggling, screaming, shoving, heaving, loud, malodorous party of humans merrily sharing bodily fluids and then paying dearly for literal and metaphorical drunken abandon in the aftermath? We are in your world, because we are forced to be. We have to put up with your world, like social slaves, because you will not even listen to us when we suggest how to make your world a little more pleasant for you and for us. We want to show you how to co-exist with us in a gentler, kinder and more fair world. But how much are you listening?

Here’s a perspective on social responsibility from an immunocompromised, hyper sensitive Autistic middle-aged person: Me. Moi. Mir. Saya. 我 .

But wait, before I continue, you may well ask, “What does Autistic hypersensitivity have to do with being chronically ill?” The answer is, a great deal. There is not enough funded research on the sadly common phenomenon of the chronically ill, hyper sensory Autistic. There are many of us, if you care to look beneath the surface, that is, if you dare to lift the veil that we often place upon ourselves because we fear social and professional consequences. Well, here is my theory from my own lived-experience and that of some others like me.

Stress, as everyone already knows, contributes towards a plethora of ills. Even usually healthy people can be brought down by excessive stress over a prolonged period of time. What most people don’t know is that negative hyper sensory reactions place a huge amount of stress on the Autistic body. This stress in turn triggers whatever chronic conditions that they may have, which means, a constant barrage of different assaults to an already fragile constitution.

The Intense World Theory is not without its problems, I would challenge some assumptions and strategies put forth, but the truth of the matter is, like it or not, many, if not all Autistics with hypersensitivity face a barrage of undiluted stress just by venturing outside their Clement Space, that is, away from their ‘safe’ zones. For a hypersensitive Autist with a lifelong autoimmune condition that is exacerbated by stress, this means there is never any period of “remission” – any length of time where the person is not suffering flare ups – which some others who are not hypersensitive do enjoy. In fact, I had no idea there was such a ‘thing’ as remission, until I joined a worldwide chat group for people with the same autoimmune condition.

My theory is not the result of fanciful creative license, I’ve discussed this phenomenon with all my personal doctors, the many medical specialists that I have had the good fortune to consult or meet socially, I’ve even discussed it with Lucy’s veterinarians. Yes, you read that right. Didn’t you know, dogs suffer from stress too? And most of it is caused by humans. This conversation around stress and stress triggers has been going on for at least fifty years. In fact, I have my father to thank for starting the long and arduous journey regarding my first autoimmune condition, way back in the 1970s when so little was known. He was a respected dental surgeon with physician, specialist and medical scientist friends in Singapore and overseas. Even then, all the signs pointed towards inordinate stress, but they had no idea why I was constantly stressed, nor did I, of course.

So, from out of this salad bowl mix – of Autistic hypersensitivity, being forced to endure a harsh and hostile social and physical environment, and an autoimmune condition that developed as soon as I entered mainstream eduction – emerged some rituals and strategies for survival.

Let’s look at personal hygiene first.

Here is a glimpse of a few important contents in my handbag or backpack, whichever I am using for the occasion. I call it my “sanity kit”, which travels with me everywhere I go.

IMG_7995-sanity-kit

Autistic Bunny’s Sanity Kit

Yes, I am ‘that’ person normal healthy people laugh at all the time, that weird character in movies or television shows with the quirky ‘abnormalities’. I wipe the surface of the table and seat at eating places, I wipe the screen and folding table in the airplane, I wear a surgical mask when I am not feeling well (so as not to spread my germs) or when the air pollution or smells become too overwhelming. I wash my hands very often and I use hand-sanitiser when I am unable to find a clean enough public toilet. I carry a separate “sanity kit” in my waist pouch when I walk Lucy too, sanitising my hands after picking up her poop – even though I don’t directly touch it, of course, there’s the poop bag, remember? – before I hand her a treat. Lucy expects a treat immediately after doing a poop or a wee, so my hands need to be clean, don’t they? I also wipe Lucy after she has done a wee or poop before we enter a building during times when she is working and accompanies me as my Assistance Dog. I have seen people stop and stare, and sometimes point and chuckle, when I am wiping her. It is admittedly a hilarious sight, a middle-aged woman in working or formal attire (I attend quite a number of art exhibition openings), wiping the giant derrière of a tall, black Greyhound with a bright yellow coat that says, “Assistance Dog” across it!

Well and good. Have a chuckle, make a parody, mockery or whatever else. But guess what, here comes COVID19, and now, things that people laugh at have suddenly become desperate necessities that they fight over. Surgical masks, hand-sanitiser, anti-bacterial wipes, alcohol wipes, isopropyl alcohol were swept off the shelves. This actually caught me off guard because I was running low at the time, and as a result, I have been unable to procure any of my usual stock for my “sanity kit”. They remain “out of stock”, and of course we have all heard about the grand toilet-paper circus by now. At first, I thought it was only a silly Asian quirk, because we started it first, remember? Then, to my horror, I discovered that all of modern humanity seems to be obsessed about the stuff. There are even videos from Australia showing people literally fighting – shoving, yelling, snatching – over loo paper. Wonders will never cease.

Would it have become such an aggressive emergency if the majority of people regularly practised good sensible hygiene as part of their daily lives? I think not.

Next comes the topic of social distancing.

There is the ‘thing’ called, “Working from Home”, a kind of social distancing, which many are now suddenly advocating. Before this COVID19 situation came upon us all, working from home or limited social contact was considered either ‘lazy’ or ‘luxury’, or ‘snobbish eccentriticy’. In Singapore, working at home is still a somewhat foreign idea, people think those who say they work from home actually just lounge around in their pyjamas all day watching Netflix, or they are slack and unproductive. Well, yes, this may be true for some, but they are in the minority. In fact, I have many friends with disability who work from home (pyjamas notwithstanding), and they are diligent, committed, and by far more productive, achieving higher standards than the average office workers, yet they are paid much less, and enjoy no medical benefits or other perks because they are mostly freelancers like me. Of course, how much time is spent at home does depend on the nature of the work. It is sometimes still necessary to venture outside to do tasks that require being with others: going to the library to borrow reference books, meetings with potential clients, or if you’re an artist, sourcing for materials, undertaking the hard labour of set-up and take-down etc. Working from home – either solely or part of the time – provides many disabled people a way to stay productive and a chance to contribute more powerfully to society while trying to earn enough money to pay their personal bills in order to simply stay alive. Remember, disability of any sort is expensive, it means higher bills at the end of each month despite lower and unstable income. We’re not squandering our hard earned dollar on expensive holidays or Louis Vuitton. It doesn’t take a mathematics genius to figure out the sums in this kind of inequality.

A friend of mine in the USA is paraplegic, Autistic, and has numerous disabilities. She almost cannot venture outside at all for fear of catching a common cold or cough, because any infection can be devastating for her. She has life threatening allergies that add fuel to the already crackling fire. Yet, within her limited resources, she can and does find small windows of energy and time to create amazing digital art, and I have included some of her beautiful creations in my first exhibition in Sydney, Australia, in 2013. It is a pity that nobody cares enough or is able to appreciate her art for what it is, instead, people just look at her disability and discount her work. Their professional work deserves recognition and fair remuneration. But sadly, it is an unjust world with a value system that does not make sense to the Autist’s mind. Some of the art hanging in hotel lobbies and rooms are questionable even to the least critical eye. How did they get there? It’s mostly to do with social positioning. If I had the means, I would love to create opportunities for people like my friend.

In my case, I am fortunately not so severely ill that the home office is imperative. I can and do achieve a great deal while maintaining high standards of professionalism even when engaging in vigorous activity outside of home. One only has to look at my C.V. to see the work I have done. I wasn’t exactly hiding in a cosy hole, and I didn’t top my PhD cohort by being a lazy layabout or a self-absorbed hermit.

Social distancing isn’t really such a novel practice for people like my friends and me, it is part of our daily lives.

But now, COVID19 has descended upon everyone, no nationality spared, and I have recently had to make a gravely difficult decision to practice a combination of social distancing and self-quarantine as a conscious and deliberate act of social responsibility. The key people affected by my decision were amazingly supportive, they very quickly understood the urgency and necessity, others thanked me when they themselves were faced with the same dilemma, while others ho-hummed.

Yes, I know, many people unused to the practice and concept of social responsibility tend to think this way:

“If you are so unwell that you must impose social distancing in such a drastic manner, then shouldn’t you be lying in bed all day, every day, for as long as it takes to ‘get well’, languishing in a semi-comatose state, unable to do anything, and barely alive? Why are you being so active on social media and writing lengthy, scathing blog posts? You must be goofing off and lying about the severity of your illness!”

The truth is far from this assumption. Firstly, I will never ‘get well’, my situation will not change till the day I die. That is why it is called a chronic illness or a lifelong condition. Secondly, I can actually do a lot more than lie in bed during even severe flare ups. For the chronically ill immunocompromised, even if they are seen out and about doing ‘normal’ things, disciplined home rest is crucial to their survival. For the immunocompromised hyper-sensory Autistic, isolation is imperative Clement Space. There are gentle things within Clement Space that even a physically fragile person can do and find joy and fulfilment in, especially an Autist with intense passions and interests. I sew, crochet, make prototypes for future projects, draw, paint, play music, write music, listen to music, read, write, swim, walk with Lucy, spend quality time with her, engage in research, chat with my friends around the world, help one another out with ideas and concepts etc. Inside my Clement Space, I am the most creative and productive, and it is herein that I develop my most important work before I bring it out into the world for all to see and hopefully appreciate, or benefit from (depending on which one of my professional hats I am wearing).

As for being active in social media, well, actually, the medium offers people like me a cogent channel for another kind of productivity and social activity, without the high damaging costs. It all just happens to proceed differently from the perceived ‘norm’ that is all. Did you know that some of the most prolific and cogent minds are people who do most of their amazing work shuttling between hospital beds, home rest, and work that takes them outside? One of them is Cal Montgomery, a disability advocate I respect greatly. I follow him on Twitter and Facebook. Another is Amy Sequenzia. There are many more, if you care to find out. Their social media is awash with material that is often way above my humble little ramblings. Besides, my main social media page is merely a place where I post other people’s work that I think worthy of notice and consideration. I am merely a humble ‘librarian’ curating a reading list, I am not the Diva here.

Right now, I am in the midst of a worldwide pandemic, where humanity is panicking and running around like headless chickens. Unfortunately, I happen to be struggling through a particularly severe flare up and on strong immune-suppressing medication. This means that I can seriously endanger myself and others in turn, if I behave irresponsibly. At the same time, I am also aware that I will be criticised and misunderstood even when I am being considerate and conscious of my social obligation. But this long blog post is an extension of my social responsibility: I am practising social distancing as well as sharing insights from my world to encourage, educate and hopefully foster better social understanding all round.

What specifically have I been up to these few days after I announced my decision to embark on social distancing and self-isolation? As a matter of fact, I have already been attending meetings on Skype, Zoom, Google meets etc, for ongoing research work I am undertaking with researchers outside of Singapore, and so this has continued uninterrupted. I am being productive. I am still engaging in three separate research projects, still creating designs for future art work, dreaming up ideas for another grand opus, and catching up on time spent with Lucy. I owe her and myself this. When we are not directly interacting, she sleeps next to me as I work, and the energy that comes from her very presence strengthens, renews and inspires me. I am revealing these intimate glimpses into my private life because I want to illustrate to the uninitiated that social distancing does not need to be painful or unproductive, and it is definitely not selfish. I am contributing to herd protection as well as continuing even more energetically towards my oeuvre, which I hope will also be of some benefit to the world at large in the future.

Perhaps this terrible COVID19 situation is going to teach ‘normal’ people about exercising due care and caution, considering the wellbeing of the community above their own desires, acting with gravity and grace, and building a stronger accessible and inclusive social structure that supports everyone. I am no hero. It’s taken me COVID19 to make this stand. But I decided that I must not be silent any longer about this part of my disability. Everyone knows me as the outspoken Autistic Dr. Dawn with “no filters”. But my other hidden disabilities were not well publicised before.

Well, of course, now everyone knows. And this is the reason why I have come out into the open:

I do not want anyone like me, but who does not have the means to speak out, to have to continue living in fear. I do not want disabled people to be anxious about themselves and too afraid to make provisions for their own self-care. I want those who are similarly vulnerable to be given equal opportunity to do whatever they can for themselves without needing to hide behind a thick suffocating veil. I also want everyone with whom I have some connection in any way at all to understand that we are not alone, we are all responsible for one another, the disabled and the non-disabled, young, middle-aged and elderly.

I hope that by stepping forward, I may in some small way point towards a gentler, more empathic society. Someone has to say it as it is. And that is usually the Autistic, isn’t it? So, here I am again. Saying it the way I am now (in)famous for doing. Without deliberate obfuscation, because this is the only way I know how.

Whilst I am at it, I’m not ashamed to add as a prologue that I need work, of course. Which freelancer doesn’t? For me, working hard is also Clement Space, the process of it rejuvenates me, it is a kind of restorative activity, to keep my Autistic mind, soul and immunocompromised body in gentle synchronous equilibrium. So, if it is writing and research, consultation on my topics of passionate interest and expertise, or an art commission, do please let me know. I can work faster and better inside my Clement Space, that is, under ideal and respectful conditions that are satisfactory to both client and hired professional. As can most of us who are self-driven, intensely focused, passionate about our work, but have disabilities that require that small bit of adjustment for fair access and inclusion. So, email me! If you need work done that I cannot do, I will recommend some other disabled person who can. I am, after all, leading an eclectic bunch of disabled artists called the Disabled Artists’ Collective. We have done some groundbreaking work together, and we hope to continue to do more.

We, the variously disabled, are an untapped cogent force, you will see, if you will venture to view the world from our vantage points.

 

Footnote:

Oh yes, and remember this guy? This video that emerged on 27 January? The voice in the wilderness? The voice that nobody really listened to because… well… whoever listens to Hong Kong anyway, these days? To so many now, Hong Kong is just China’s snot. But I listened. I take whatever comes from the people of Hong Kong (not necessarily the puppet government) very seriously. I’ve lived for a total of eight years among the people of Hong Kong, and I am proud to say that I learned how to think with depth and independence during those years. I also think I have received a better education at the University of Hong Kong than if I had attended a local university in Singapore. Hong Kong has paid a hefty price for their freedom of information and speech, and they are fighting valiantly to keep it. In many ways, their level of civic consciousness is way above ours in Singapore, maybe because they don’t have our kind of government to take such good care of their needs in every area of social and community life.

And guess what? Professor Gabriel Leung was dead right about COVID19. No pun intended. Have a good listen. It’s just over 2 minutes, but every single word he utters is carefully considered, precise and literal.

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