no business like show business

I read this blog post by the amazing Rhi this morning. “Performing Pain” – about the autistic experience of pain, a subject many autistics are familiar with. Many of us live with ‘comorbids’ that carry a heavy price tag – pain – which are often mistaken for Autism itself but they are actually just leeches, parasitical hangers-on, sucking the life blood from us, nothing to do with autism at all.

There isn’t much more to add to this exquisitely painful beautiful piece of writing by Rhi, but just a few questions, suspended mid-air, nebulous, ominous, diaphanous, whirling and twirling, wheezing and teasing, with no beginning and no end.

What if the “I” here (in Rhi’s writing on pain) is always – constantly without reprieve or remission – in intense physical pain? What if the “I” still has to perform in the grand show, the “I” still has to plough through the thick stabbing fog of pain – daily, nary a minute’s respite – while performing the unnatural as naturally as possible? What if, ultimately, there is no Clement Space available into which to retreat and repair. What then? The screaming is reduced to a constant hum, almost silent, compressed, suppressed and repressed, it has no voice, no outward channel of expression, no ability to reach for human help apart from tiny interstices of raw, exposed impatience and irritation which are misunderstood anyway, and too hastily placed by non-autistic observers into the “challenging behaviour of autistic people” box? Is it any wonder that autistics prefer the company of animals, of elemental connections, instead of the un-empathic assaultive drudgery of inter-human interaction?

Scheherazade’s Sea (2010), Roaring Whispers (2013), Little Sweets (2014), and Sonata in Z (2015) were all tiny glimpses, pianissimo enunciations, mere drops in an ocean of tumultuous booming that is the state of living with pain. No, it’s not autism that fragments and crucifies the autistic soul, spirit and body. It is the ever too present (for many, not all) stranglehold of pain that slowly and surely wears us down. As if coping with normative constructs and harsh alienation isn’t battle enough. We don’t “live with autism” or “suffer from autism” – autism is simply our state of Beingness, a crucial encompassing part of us that lends the pulchritudinous ability to view and experience the world in all its elemental dynamic glory, visceral and intellectual at the same time. If anything, autism is the ultimate saviour, if anything can atone for the wretchedness of existence, crucified at the Cross of Normativity. It is Living with Pain that is excruciating. And ultimately destructive. Autistic or not. But for the autistic with heightened senses, pain propels the Being into extremes from which there seems little hope of escape.

Still… in the words of that Irving Berlin song that wrings (no spelling error here) and writhes in my headspace: “There’s no business like show business” – so, “Let’s go on with the show!”

Footnote: Here are the lyrics in case readers cannot access the youtube video. Apologies, but I haven’t the spoons left to punctuate. Maybe this might give the song that added punch of pain, sifting through a huge volume of words without punctuation. Enjoy the show!

There’s no business like show business Like no business I know Everything about it is appealing Everything that traffic will allow Nowhere could you get that happy feeling When you are stealing that extra bow There’s no people like show people They smile when they are low Yesterday they told you you would not go far That night you open and there you are Next day on your dressing room They’ve hung a star Let’s go, on with the show The costumes, the scenery, the make-up, the props The audience that lifts you when you’re down The headaches, the heartaches, the backaches, the flops The sheriff that escorts you out of town The opening when your heart beats like a drum The closing when the customers don’t come There’s no business like show business Like no business I know You get word before the show has started That your favorite uncle died at dawn Top of that, your pa and ma have parted You’re broken-hearted, but you go on There’s no people like show people They smile when they are low Even with a turkey that you know will fold You may be stranded out in the cold Still you wouldn’t change it for a sack of gold Let’s go on with the show Let’s go on with the show

snapshots of grace

 

(Above: Rhapsody in Orange – photos of Salmon roe, Salmon, and common wholemeal bread squares.)

Unabashedly photographing food – almost everything I imbibe – as if on a mission. Unlike most, though, my food is seldom fanciful or posh, my captures are not from expensive restaurants or showy, but merely simple snapshots of quite ordinary and mundane fare. For me, each one carries an association – sometimes sensory memories of textures, smells and colourful tastes, other times brief mini narratives of sorts. Sometimes I am captivated by its arrangement, its visual composition framed within the plate or bowl, and the larger assemblage on the table of many miniature narratives.

 

(Above: Visual captures of Lunar New Year fare, snippets of tastes, smells and accompanying sounds – mostly very loud sounds – of festivity and celebration. Individual photos have descriptions.)

When I began this blog, I started out with a simple mission: to document the great food challenge of ‘How to eat on a scholar’s miserable budget”. Musings were deliberately kept light, sometimes whimsical and other times pondering the deeper things via the cogent agency of ‘food-ing’.

 

(Above: Photos of BunnyHopscotch style food-ing.)

My photographs of food are always intimate and personal – to me – and they speak of suspended moments in time and space, taking deep breaths of appreciation, gratitude at each savouring, and wonderment that I possess such intricate senses – all reflections of and conversations taking place in a kind of Clement Space that I inhabit together with the life-giving morsels du jour.

 

(Above: Eating out with family has a different kind of melodic & harmonic structure.)

 

I like the act of documentation, and my senses are natural archives being fed on a constant basis. And most important to me, on a deeper level, food-ing has been and continues to be an agency for gratitude, and the learning to embrace grace.

clement riffs

 

It is 6.40am as I start typing this. The churning, heaving, hurling and caterwauling, the uneasy prancing around Neuronormative plastic tulips, swimming against the tidal cacophony of insidious agenda and spiteful fear mongering, all while valiantly maintaining expert façade of sangfroid-with-edge. What a week it has been!

The highlight ‘achievements’ of the last seven days?

Rid myself of the Millstone of Inefficiency in a project I am working on – nothing personal, I am not here to make friends, I am here to work and I find it hard to tolerate hindrance.

Emerged from the miry bog Swimming with the Hogs, made a firm decision to take control and issued forth my Ultimate Ultimatum – it’s my terms or nothing at all, I’ve allowed them to snuffle in the mud for too long, time to move ahead or leave.

Not melting down while dealing with Belligerent Entities must of course count as the highest accomplishment of the week. Very proud of this Autistic Bunny. (But of course, I had help from my Canine Angel.)

Now, for some clear lines, like fluid aromatic ink on smooth silk, here’s Chick Corea and Bobby McFerrin with a song I love (I learned to play the Autumn Leaves by ear as a wee lass of seven and it is still one of my favourites). Sitting with my Beloved, watching the light slowly seep into the dark sky as a new day asserts itself upon our consciousness.

I am so glad I took the good advice of my Fine Arts Professor (who has now become a well loved friend) during my undergraduate days and chose music as my major. Now that I have made the transition into art, music is still a Clement Space that I return to for sustenance and strength.

A Clement Sunday to Every Bunny!

Show me the money! Autistic speakers and speaking gigs 

Important, key fundamentals from Jeanette Purkis.

My own experience since returning to Singapore has been a mixed bag of outright exploitation and subtle disrespect. There’ve been people demanding I speak for free at their terribly named ‘Autism exposing’ events because it will give me “exposure” (as if I needed to pay out of my own pocket for any exposure in their tiny weeny blatantly exploitative event), people writing books and asking me to contribute a chapter but refusing to either pay an honorarium or a percentage of royalties just as gestures of respect (I actually told them frankly that they ought to offer some respectful gesture, but “I don’t make much from it” was their paltry and stolidly unmoved excuse), and organisations using an autistic person with a PhD as a token mascot, always polite and always ‘nice’ but no pay whatsoever, not even reimbursement for transport.

There also have been organisations asking me to speak and offering one-tenth of market rate because of ‘budgeting issues’.

As outlined by Jeanette, there are the obvious ones to avoid, but also many less obvious ones that perhaps genuinely cannot afford market rate – or perhaps their bosses do not want to sign the cheques for something deemed of lower value. The spirit of neuro-colonialism is dominant here in Singapore. Autistics are deemed unfit to work in certain professions, no matter how qualified or experienced (where experience is garnered overseas). And in general, an autistic person with a PhD is in their eyes worth only one-tenth of a non-autistic person with a PhD.

Change is needed. But it is no easy task to unravel all the knotted threads of entrenched discrimination and disrespect. Autistic adults and professionals need to practice what we preach, but we also need to have a joint vision for the future supported by non-autistic allies, especially parents of autistic children. Is this marginalising status quo what you parents wish for your autistic children to face when they grow up, or do you want something better? Time to wake up, stand up, eschew all the inspirational porn videos being churned out to make you all feel so gooooood, and start asking for equity and respect. For us now, and most of all for your children’s future.

YennPurkis

I recently posted on social media about how I feel people delivering a service as a public speaker should be paid for it, regardless of whether the person is autistic or allistic. I understand that there are a number of considerations around being paid and maybe it isn’t always as simple as ‘pay me,’ so I thought a post unpacking some of the issues was in order. 

In some instances there is a really clear case of injustice and exploitation. I remember being invited to speak at a conference some years ago. When I asked about my fee the organisation said they couldn’t pay, so I asked about having my flights and accommodation paid for and they apologised once more before telling me that the non-autistic expert speaker was charging several thousand dollars for their appearance and they had no money to pay other, autistic speakers. Needless to say…

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reflets dans l’eau

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stille nacht

2018 was unexpectedly obstreperous and brutal. A vast, swirling, seething, somewhat inebriated ominous monstrosity ingurgitating every attempt at hopeful rejuvenation, each ounce of vim and vigour slowly inhaled into its impenetrable mucilaginous dark cavern, leaving limp, brittle skeletal remains crackling in the sizzling heat of unrepentant tyranny, unrecognisable construal of once fierce passionate and spirited determination.

Advocacy has extracted its ponderous price. What irony, for one who never set out to be an advocate anyway. It is too arduous and violent for gossamer wings, too loud for tender ears, too rough for quivering fingertips.

Yet, where there is life, there remains slithers of flickering hope. And my life is not yet over, albeit saved time and time again by a Canine Angel whose existence beside me surpasses all reason, all logical apologia.

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whispering hope

My minuscule whisper to the grand cosmic gyration for 2019? Time to reflect, rest, and retreat gracefully into Clement Space: art-making, embracing pulchritude, tasting each nuanced fluttering of time moving rhythmically through wordless interstices.

Myths that help keep the autism indu$try in bu$yne$$

Reblogging an excellent article about the harmful perpetuation of myths about autism and autistics.

Since returning to Singapore, I have myself come face to face with so much ignorance and lack of progressive understanding about autism, and blatant exploitation – I call it the Autism Grand Circus Industry – with non-autistics ranging from superbly brilliant to the crass and loud all frenetically peddling a range of autism cures (CD water, ASEA water etc), myriad programmes aimed at ‘normalising’ autistics, and events claiming to “Expose” Autism, all without real autistic professional consultation. This of course leads to a stubborn ableist culture where many non-autistic parents are either making money or getting high on publicity for claiming expertise in autism based on their third-party observation of their one or two autistic children which they may or may not truly understand anyway, or parents more happy to be fleeced (some programmes cost up to $20K!) by unscrupulous promises of ‘recovery’, ‘healing’, ‘overcoming’, and of course, ‘cure’, than to pay to consult actual qualified Autistic Autism Professionals who offer concrete help to better understand autism and better support autistic people of all ages and all needs that are respectful of the actual autistic paradigm.

Autism is a very serious money-spinning industry. All over the world. And the people profiting are not the autistics.

Autistic Collaboration

Currently the most visible way in which autism contributes to the economy is by providing a substrate from which a growing autism industry can extract profit.

What CAN be misunderstood WILL be misunderstood. Unless you are autistic there is no difference between “cure” and cure. Sadly, there is no shortage of “autism professional advice” and “cures” that amount to a sarcophagus for autistic individuals. The result is a bullet proof technique for creating mental health problems and selling further “treatments”. The first step towards progress could not be simpler:

Let the set of cures remain empty, and reduce the set of “cures” to the empty set.

To identify the “cures” it is important to understand the myths that are still perpetuated by the autism industry or by individual “autism professionals”.

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Myth 1: Autists lack empathy

Reality: There is a double empathy challenge.

It is not only the…

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a clement Christmas

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Clemency is hard to find. Clement Space is an ongoing quest. As is the Endeavour of Empathy.

Looking back, contemplating crashing fortissimo and lifting appoggiatura, soul crushing depletion and spiritual strengthening… Artaud and Wagner, humour, beauty, gritty determined ‘dogliness’… Lucy has once again carried me through yet another year with her gentle, wordless steadfastness of spirit and embodied grace.

It’s Christmas Eve. I recall with gratitude and fondness, the most precious Christmas gift from our sojourn in Paddington, Sydney. It was 2013, a quiet Christmas Eve, early morning when the summer air was still cool and crisp. Those roses, tossed out by someone, still fresh and beaming with a brilliance I’ve never yet seen nor witnessed again in a bunch of flowers. Put into my hands with a gruff greeting, from our friend Michael, an eccentric old man who lives in a rickety van. We met when Lucy and I were out walking, Lucy chose to say hello to this elegantly dressed solitary figure, smoking and reading the newspapers on the park bench just by our grass patch we call “dog patch”. I miss Paddo. I miss our neighbourhood, our friends, and I think of them often. Especially Michael. I hope he is well. One can never be sure. Michael comes and goes. Nobody knows where and when. I don’t know if I’ll ever see him again. He was choking back tears when we last said goodbye, too proud for a hug, we did not even make eye contact. But I hope he knew how much we would miss him.

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This Christmas Eve, Lucy and I are ‘home’ with mum, my baby sister and brother-in-law, their two little furry children, and our helper Nula. Lucy has over-eaten again, too many treats and a giant lamb bone from her aunt who thinks she is too thin. (Though I keep reiterating that Lucy is a Greyhound, they are naturally lean.) We are waiting for Christmas Eve dinner – yet another private gastronomic feast by my amazing brother-in-law. The over-fed Canine Angel is asleep in bed, next to me. I can hear her rhythmic breathing, and she opens her sleepy eyes occasionally to check on me.

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I reflect on Christmases long past, and I realise how peaceful it is now. Without any more pomp and ceremony, no more need to dodge snide remarks and undercurrents of bitchery or witchery, no competition for whose gift is the most expensive or who has achieved the most success in the year. Those are now distant memories, and juxtaposed with our recent ones, they stand as reminders of how much goodness has come along since I walked away from all that mire.

We had our pre-Christmas dinner with extended family and friends last week. It was a very merry one, noisy and overloading but not at all emotionally or mentally exhausting. A pleasant, happy, kind of overload. And, of course, the food is always delicious – how could it not be, with a top professional chef and two F&B professionals in the party?

This year, I slogged away all week to finish my handmade gifts to mum, baby sis, Mini-B and Tiny-T. A welcome restfulness of spirit and blessedness of mind – taking time away from a surfeit of advocacy work, campaigning and proposals – just to touch, feel, and flow with the patterns and variations so clement to the senses. ‘Making’ is a beautiful activity for me, calming and restoring. I’ve named my jewellery line “LaLaLouBelle” – after Lucy and my childhood nickname for baby sis. Every piece is made up of vintage and antique components, collected through my early years of avid travelling or handed down to me from mum and granny. Each one a narrative of love and filled with meaningful history.

Oh, yes, and Little Mini wee-wee-ed on Lucy’s bed yesterday, so I’ll have to buy Lucy a new bed. Mini is a spunky little (fat) button, with a penchant for Lucy’s bedding.

We’re all set! I’ve put up a miniature tree, with tiny lights and trimmings. Our presents are all ready for the ritual tonight. – we open ours on Christmas Eve.

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A peaceful and clement Christmas Eve wish to all from Lucy and me!

Sensory Overload –

A frank & honest look at autistic sensory overload – the setting here is the office, but overload can happen anywhere. Christmas and New Year season can be especially triggering for us. And overload is not a fanciful thing “just in your head”, it is real, palpable and painful with long-lasting biological effects (often even trauma to the body).

My Autistic Dance

A pan boiling over on a hob

There I was at the office, sat at my desk. A normal day. Listening to music through my noise-cancelling headphones: some classic 90s Manchester tunes from the likes of James, New Order and Happy Mondays.


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only an expert

The Autism Grand Circus Industry has grown out of proportion. Tiresome and tiring, depending on where one happens to be standing. Everyone claims expertise – from the Autism Mom who has written a few books based on their observation of their own child/children and now goes around giving talks and dishing out sage advice about autism, to the learned non-autistic professional with many degrees in Autism, everyone is an expert dealing with the Autism Problem. Everyone, that is, except the Actual Autistic person. Autistic people are mysteriously ignored and sidelined in the Autism industry. A phenomenon so strange that it is almost eerie.

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Can magic mushrooms cure autism?

Talking about bone-chilling, I recently found this in a webpage of a business specialising in “treating” autism. The alarm bells rang loudly when I saw “Chelation” and “CD Water”. Then I did some research on the various “Dr” people named in this letter, and found them all to be promoting expensive dubious ministrations aimed at “shedding”, “recovering” and “overcoming”. Some of these involve injecting the autistic child with unregulated substances, others focus on dietary interventions, all couched in complex-sounding pseudoscientific terminology. Is your blood curdling yet?

ARN screenshot

An autistic friend of mine has been valiantly trying to educate parents about snake oil sales pitches, dodgy programmes and harmful approaches to fixing the autism problem. Very brave person indeed, because he was variously derided and chided, treated like a foolish child, instead of someone worthy of respect. I often wonder, do these same parents even have the mindfulness to ponder this: If you treat autistic adults this way now, what kind of world are you preparing for your autistic child to grow up into? Is this how you’d want others to treat your autistic child when they become autistic adults? Or are you gambling all you’ve got on the great “cure” casino floor, thinking it’s going to be fine, your child will be rid of autism by the time they become adults, and hence they will not have to face this kind of demeaning and crushing ableism?

I honestly find it difficult to fathom what goes on in these parents’ minds – there, I admit it, I lack Neuronormative Theory of Mind! It is excruciatingly difficult to be thusly illogical and unthinking. Yet, I am told I should empathise a little more, “slow down” and allow others to catch up. My doctor says it’s good for my heart – you know, that strange squishy squashy rhythmically driven organ responsible for pushing blood around the body? Yes, that one.

Perhaps 2019 will be a year of “slowing down”, but in a different way: that is, finding Clement Space inside gentle things, wondrous connections and conversations with the material universe. I love my autistic world, it is a pulchritudinous eco-system, but the crass, grating vibrations of the normative realm is at odds with autistic tranquility. Too many experts. So little space for Beauty.

reciprocate

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I dance because I cannot walk…

Should a disabled person have to apologise for not performing according to ableist constructs?

Should a wheelchair user apologise for not zipping up steps and not running marathons?

Should a deaf person apologise for using sign language instead of the spoken vernacular?

Should a blind person apologise for feeling, touching, smelling and listening to the world instead of seeing the way the sighted do?

Why, then, should an Autistic person apologise for not performing to normative social standards?

Who writes the librettos? Who pens the symphonic blue prints?

Look me in the eye!

Don’t stare at me for goodness’ sake!

Sing when you’re told to sing.

Stop singing when you’re told not to sing.

Do not flap, you look silly!

You need to learn to self regulate!

You’re crying for nothing again.

Can’t you see I’m hurting, how insensitive can you be?

All the world’s a stage… but who directing the Grand Theatre?