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

COVID19: sonata of comfort

musicscores

What shall I play today?

Conundrum. On the one hand, I am loving this stay-home directive so very much, there aren’t enough hours in the day for me, in fact. Working from home is peaceful, and I am much more productive.

But here’s the rub. The painful dichotomy. My anxiety levels are rising and bouncing off the walls and roof. Why? Simply this: so many of my friends around the world – autistic ones too – are just not coping well with this enforced isolation. No, I am not talking about those who are grumbling incessantly about their deprivation of haircuts, spas, manicures, pedicures, massages or ‘bubble tea’. I am talking about those people with mental health struggles who are in various states of panic, despair, incapacitating depression, feeling suicidal and self-harming. I feel my friends’ pain, but I am helpless to alleviate or ameliorate. I am at a loss for words, I don’t know what to say and am afraid to say anything for fear of sounding too glib or worse still, in case my own personal joy becomes offensive to them. Continue reading

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

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: detox

detox

detox

Well, I did say I am loving the stay home measures and I cannot get enough of solitude and semi-isolation (I live with mum, the helper and the floofs). I meant it to the last tiny iota. Lucy is loving me being home too. So this isn’t a grumble about being bored with nothing to do at home – in fact, I actually do not relate to the word “boredom” at all. There’s always something exciting to do on my own (or with Lucy), though I’m spending most of my time nowadays working and I wish there were more hours in the day for making art, playing piano, writing music etc. (Sigh. I mustn’t complain, some work is better than none, especially since 70% of all work for the year has been cancelled.)

Detox. During this stay-home period, I have decided to give myself some positive attention and self-care, and do some things that I have neglected to do, for my own wellbeing. One of the things is, I am detoxing from the anxiety-laden activity of phone calls. Yes. You read this right. Most Autistic people actually really abhor voice calls, you know, the kind where you jump in fright and your heart begins to pound excessively hard when the phone suddenly rings? Yes. That. Oh wait, you’re not autistic and you don’t have sensory processing difficulties? OK. Then perhaps you’re one of those who do like phone calls? It’s ok to like what you like, but I don’t like it and I am trying to convey this to my friends who do like phone calls. 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

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.

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.

CORVID19: arabesque

I’m not always ranting. Staying home in relative isolation is not at all bad. I am loving it, in fact.

What did I do today?

IMG_7823-lucy

Sizzling Walky

Took Lucy out for a walk in the morning. It was hot and humid as usual, so we didn’t venture far.

Managed to read two articles for one of my research projects. Made notes and the stuff is in my brain now, bobbing along and creating gentle waves. Tomorrow I shall doodle a few visual notes. I love my work!

IMG_8027-lucy

Lucy & her PEMF mat

Lucy and I shared the PEMF mat. We have been diligently using it. Early days yet, but I think Lucy is actually feeling less tense in her muscles.

Probably ate too much food.

Tidied up some fabric and odds and ends in my warehouse of a bedroom.

Debussy-Arabesque-score

An old favourite

Printed out a free music score of Debussy’s Arabesque, and actually sat at the piano to play it. Been wanting to do this for some time but too much swelling in shoulder, elbow and wrist joints. On anti-inflammatories now, so the swelling has subsided somewhat. Pleased to find out I can still remember how to play, used to be one of my favourites, but it’s been more than thirty years now. The muscles and ligaments are weak. The timing was hard to achieve. I still have memories of me practising this on the Steinway at HKU’s music department in the 1980s. A bit of pain returned, so I stopped. Switched to easier stuff, some old jazz standards, maybe?

Mini-B came over from next door to say hello. I was playing Desafinado – she wanted to join in the fun, but it’s hard to play Desafinado with a fat ball of fluff in one arm!

Tidied up some files and did a bit of photo editing.

Showed mum a few videos of the amazing singing coming from Italy.

Read some more articles on COVID19 – information sponge here. But so heartbreaking at the same time.

Just another simple day in the life of an immunocompromised Autistic Bunny staying home during a worldwide COVID19 pandemic. A very thankful one.

Now listening to Lucy’s breathing in bed, and about to join her in dreamland soon.

IMG_8044-lucy-zz

goodnight, Every Bunny

Good night, world. Please stay brave and safe as you possibly can!