out of whack

Fluffy

After three full-on gruelling days, APAC19 (Asia Pacific Autism Conference 2019) is over. It was an amazing and even sometimes exhilarating event – a first of its kind in Singapore where actual autistic people permeated all but the very top mesosphere at an autism event. 1,800 people gathered in the massive Resorts World Convention Centre all with the common goal of learning more about Autism and how autistic persons and those around us can best thrive.

I wrote a mini summary here, and uploaded some of my own photos, so go check it out.

Now to face the aftermath of all that dizzy positivity: my sensory system has been thrown completely off kilter, of course. Which autistic person doesn’t understand what I mean? Not one, I’d wager, though the specifics may be different for each individual.

For me, I’ve developed an insatiable appetite – it’s my mouth, my tastebuds and olfactory nerves all going chomp-chomp-chomp without care for or connection with the rest of my body. The brain is craving sensory comfort so much that it doesn’t want to acknowledge the other sensations like, well, a too-full stomach. I’m having trouble with my own physical signalling, as if I shall float away if I didn’t firmly anchor myself somewhere and somehow.

Oh, and the insomnia is deafening. I can hear everything whirring in randomly orchestrated high-pitched pretentious screech-fest in my headspace. Tones and microtones meandering, crossing, greeting, clashing, intertwining and looping.

And those bizarre lights at the convention centre, they’re gyrating and creating a bit of drama. My eyes have not stopped hurting since – I can feeling the muscles tensely squeezing around the eye socket – and my vision is blurry.

I need Clement Space. In bed now, listening to Lucy’s breath, softly undulating, her warmth emanating so reassuringly.

I must attempt to sleep now. Good night, Every Bunny!

angel

angel (June 2019)

Listening
Whirring fridge
A-flat
Human laughter in the wind
Slightly off C
Sudden dull thuds
Quickened heartbeat
A flash of white
Searing fear
Sirens scream
Inside the cavity
Of acid green
What is that smell?
Nebulous, acrid
Footsteps pounding
Headspace resounds
Broken B
Chairs dragged
Across cheap tile
Shattered F-sharp
Quivering interstice
And then amidst the chaos
Here in my bed
An angel’s breath
Comforts me

(9 June 2014)

pancakes & jelly beans

 

Seafood Horfun @ Casa Verde, Botanics

Big fat burger @ Casa Verde, Botanics

Ham & pineapple pizza @ Casa Verde, Botanics

I don’t know why my brain produced that title. There are no pancakes or jelly beans in any of my photographic offerings here today. The words were just echoing inside, wriggling and jiggling among the other bits and bobs, and so I decided I’d let them out to dance around. Perhaps something to do with switching modes from the ‘seriousness’ of advocacy etc to the now ‘lighthearted’ topic of food and friendships?

Food is an integral part of fellowship for humans, methinks. I miss our weekend noshment adventures with friend Rick, mostly in Paddo, though he did travel to Kensington for the dire period when Lucy and I were trapped in that not so suitable environment. And of course, when we were forced to move to awful Rose Bay, Rick valiantly came to our mental rescue. Thanking the cosmos for really great friendships, without them I’d not have preserved even this little semblance of my ability to function!

clement Saturday

Too hot for walks, mumma!

Today, I woke up somewhat off-kilter. Lucy was unfortunately in sync with me and didn’t even want to go out walking in the early morning. The heat this month has been really depressing. Too much to-ing and fro-ing in the last few days, methinks. Sensory overload happens even when I am enjoying myself. I have a headache, sore throat, and there’s something not quite right along my nasal passages. I just want to be with my Lucy. The family have gone out for lunch and grocery shopping: the two little fluffies in their bright green buggy and mum in her super Wheelie (we call mum’s wheelchair the Wheelie), my sister, brother-in-law and their helper.

I’m now waiting for my FoodPanda lunch delivery – Hainanese Chicken Rice set from a restaurant nearby. Lucy and I could’ve walked there, of course, but this is Singapore and if you’ve never been here, you have no idea how assaultive the weather can be at this time of the day. Well, at any time of the day, actually.

I can smell it… Mumma!!!

Please, mumma?

While waiting, I played the “waiting game” with Lucy – I place a treat near her nose, and tell her to “wait”. She must not touch the treat until I say, “Okay!” She is a good girl, even when it’s her favourite cheesy biscuit! Now, Lucy has moved to the day bed and she is chewing on her Venison ear. I am listening to the rhythmic crunching, munching and gnawing sounds she is making. It’s all music to my ears, even the squeaky juicy sounds emanating from the air-conditioning sounds pleasant. All is good and clement. Just Lucy and me here. Clement Space for Two.

Oh, is that the FoodPanda guy now? I hear his motorbike downstairs in the carpark.

Hainanese Chicken Rice set with KaiLan and soy sauce egg.

This one is for you, Rick. In memory of our Saturday noshments! Have a dogly weekend down under and say hello to Paddo from us.

aggression oppression

 

I am an artist, musician and a researcher. I am not an ‘Avenger’ or any comic book hero. I am no sword-wielding warrior. I am merely a reluctant Advocate – I dream of a world wherein there is no more need for disability advocacy because disability will just be accepted and embraced as part of natural human diversity – but I know advocacy is crucial in the here and now, else we the disabled will never have equity and autonomy. Without advocacy, I would not be able to practice my art, music and research, because of my known disability.

yellow!

The Dress Code for the event says to wear Yellow. I like dress codes. I like codes. I like structures and frames. They do not limit creativity, but rather create important space within which to be creative. These parts of social interactivity do not bother me, in fact, these are the ‘railings’ that help me to craft my spontaneity. Yes, you read that right. Improvisatory music is not something that is spewed forth willy nilly by ‘talent’ alone, it consists of years and years of finely honed, well practised and internalised riffs, sequences and phrases. The beauty of improvisation is the ‘how’, the ‘style’, the way the musicians brings forth these snippets of minutiae to form the whole, which is what the listener hears. Performance and performing are part and parcel of the joy of engaging in one’s Passion, interacting with it, and expressing it to others.

Anxiety is a different thing altogether. This, and other pressing matters, kept me in a state of restlessness all night and early morning. Well, actually, Anxiety has been pretty rapacious lately, devouring mind and body. I lay in bed, engulfed within an all too familiar nauseating sensation of slurping and sloshing viscera inside fragile cavities, with Lucy’s warm, pulsating presence my only comfort and solace.

Lucy is unwell, and I will not be taking her with me to the event today, even though this place (the National Gallery) is truly one of the most progressive inclusive public spaces in Singapore. Her bright yellow mindDog vest would’ve been just right for the theme.

Lucy @ I-Opener, Playeum

My brain found this composition at around 4am (ish), and I laid it all out later in the morning after breakfast. Doing this helps resolve the tension in my mind, which occurs when I have a complete concept ready to be executed but have not yet arrived at the time and place for doing so.

New yellow frames

A very old top from ‘Shanghai Tang’

Fuchsia skirt with yellow lining

Lime Green handbag

OK, so the lime green handbag – a gift from my baby sister – isn’t yellow, but I think it’ll provide some gradation of sensation and I love the fun, cheeky sequinned motif on the front. I shall wear my gold embossed Ferragamo ‘Audrey’ shoes with this ensemble.

Gold Audrey

Shoes are of grave importance to me, I have had many a battle, some quite fierce, with footwear since an early age. It hurts to wear these things, but they are a necessary evil, to protect against other even more nasty evils that lie in wait to ensnare, cut and graze my sensitive feet as soon as I step out of the safe confines of home. I love the feel of soft fresh grass underfoot, and I still remember the delicious sensation of running around barefoot in the garden of my childhood home, but I live in an apartment now, and I don’t trust grass that isn’t ‘mine’.

Much ado about nothing, you might think? Perhaps, to the normative world, it may seem so, but this ‘nothing’ is actually filled with so much minutiae, detailed connections, intricate complex constructions, rhythms, patterns, and systems, that it really does demand much to do and feel and think about – if you notice it all, that is. This is my ‘normality’ – an integral part of this particular Autistic Female’s quotidian ‘mundanity’, which is anything but humdrum, to be sure. The price Autistics pay each day of our existence is a high one – sensory anxiety is just one small facet, there are myriad other eclectic existential quirks that possess both enthralling beauty and powerful terror at the same time – but I would not exchange this for a life cushioned inside a bland, insipid and pedestrian existence.

I am quite exhausted from the whole exercise, so I shall have to rest a bit before launching into the Grand Mêlée later in the afternoon. Actually, I’m really looking forward to it, despite the gripping anxiety and energies spent on planning and creating order from the chaos it (anxiety) has created. I only feel unsettled at having to leave Lucy at home, because she is unwell and I cannot be there to watch over her. It’s a small thing, mild runny tummy, a bit of reaction after Thursday’s cartrofen injection at the vet’s for her arthritis, and I know she’ll be more comfortable at home, and mum will be there, so Lucy will not be alone. I refuse to work Lucy when she is not feeling top notch, even the slightest thing matters to me – yes, a disabled person with a poorly cared for assistance dog has called me “dogmatic” but I don’t mind that label, because it means I care deeply and passionately.

Rest well, my Princess.

unspoken – my response to Uniquely Me episode 3

I watched tonight’s “Uniquely Me” episode 3 – a docu-series featuring glimpses into different autistic lives in Singapore.

This episode is, for me, the most deeply confronting and profoundly gripping thus far. Maud and Edwin are twins, they are non-speaking autistics, celebrating their 35th birthday, together with their younger brother, who has learning disabilities. It could have been yet another emotionally cloying show about abject tragedy, or a piece of inspirational-porn about how heroic their mother is, for having three disabled children who need high levels of care. Yet, somehow, this mother transcends the swirling mire of theatrical wretchedness, walking with quiet, unassuming dignity beyond the temptation of sensationalism, and assumes a position of unassuming dignity. Of course, there are tears here and there, but this woman has my admiration for not succumbing to the dramatic, which so many in her position often do, given half the chance to express their pain to the world.

I watch Maud and Edwin closely, I read their faces, their bodies, their gestures, and I felt a corporeal, tangible and palpable connection with them at the most fundamental level of my own autistic Being. I’ve returned from a sensorially exacting social interaction, my throat is burning, sinuses inflamed, and head pounding. I cannot summon enough forceful intellectual, emotional and sensory strength to describe my experience of this episode in critical detail. My senses are raw, my mind worn, and I am inside an inarticulate near-wordless bubble, but I feel compelled to write this response, even if it were a brief one.

Mother Emalin carefully lays out Maud’s favourite belongings, preparing for her home visit. It struck me, perhaps even with a tinge of envy, how deeply, passionately and steadfastly this mother loves and cares for her daughter. The meticulous arranging of her things, the acceptance that this is what makes Maud who she is, and doing it painstakingly because she wants Maud to feel comfortable and happy to be home. Maud enters, and walks around her home, reconnecting with the elements. As Maud rearranges the small objects in her home, tiny symbols of her ownership, performing her rituals so puzzling yet so familiar to her mother, who lovingly tries to grasp her communications and respond appropriately, I feel a ‘knowing’ – it is that elemental empathic resonance that I wrote about in my PhD dissertation – inside my Space of Mind. I do not feel pity at all, but rather a respectful connectedness. There are no semantic words worthy of this, any further attempt to explain the tingling, singing of tiny electrical messages would cheapen it. My sadness is for the lonesomeness of Being: Maud knows that nobody is capable of truly understanding her world, even as she knows her mother loves her.

Maud and Edwin sit together, side by side, sometimes touching, other times not, but there is a powerful bond between. They live in separate care homes. The narration does not explain why, perhaps the homes cater to persons with different specific and levels of needs? Edwin is blind, and clearly traumatised by a previous accident in which he broke his leg. Their once a month visits are obviously meaningful occasions to both. My grief is for the lack of better facilitation for this family to live more fully supported lives together, and not separated like this, though everyone in the centres are doing their best, as are Emalin’s two close friends.

Once again, director BeeHar delivers a penetrating view, in the Singaporean context, without the kind of exaggerated melodrama that often proliferates most other shows like this. This is a window into the world of four gentle souls, linked together by a tender yet rugged kinship. I cannot weep for them, not because I do not see their obvious struggles, not because I do not feel their pain, but because they are not that kind of persons, and pity is not what one feels for such humble stateliness. My heart reaches out, it wants to touch them, it wants to say, “I know you,” and “Thank you for sharing this brief contemplation of your world.”

(More and more, now, I am wondering how my episode will turn out. I hope the director will show our similarities rather than differences, because I feel very much our Autistic Kinship of parallel embodiment and elemental empathy. Waiting for it on 11 June.)

concatenate

Where’s that Greyhound’s head?

Lucy – my Clement Space.

A massively overloading day. I made it through the first part because of Lucy. We attended the second Opening of I-Opener at Playeum this morning. It was heartening to see so many people at the event, and I was so glad that everyone seemed enthusiastic and supportive, and our work as a whole was very well received – but my senses were screaming with silent horror after the first half hour, and the shrieking crescendo broke the fortissimo barrier by the second hour.

When Peter, our friendly RydePet regular favourite ride came to pick us up at the end of the two hours, I was already in a near catatonic state, my headspace ringing with the imprint of dissonant cacophony. Strangely enough, I was still able to prattle away in the car with Peter and my friend Jacky, who was riding with us to the next event of the day. Was I already going into a state of disconnect?

I left Lucy at home, and Jacky and I went to attend the Peter and the Wolf show. Two of our friends, Cavan and Timothy, were in it, and Timothy’s mum so very kindly bought us tickets. But I couldn’t bring Lucy to this one. Ironic, because the venue is assistance dog friendly – Lucy has been there several times – but the show’s organiser’s “were not prepared” for us.

It was a fun show, the cast were great, and I even managed to smile for the cameraman after the show (he took a photo of Cavan, Timothy and me). But I had to scuttle away quickly after that, because my head felt as if it would explode and shatter into a million fragments.

Home at last with my Lucy, I crashed into a much needed two hour sleep, and woke up only when Lucy decided it was time for her dinner.

The headache is still doing its pounding thing, the two panadol insufficient to quell it. Time for an early dive into bed.

For people like me, some days, just making it through is a laudable achievement, something to be proud of. And today was a pleasant day. Really. I love my friends, so many came in a much appreciated show of support – in fact, I was so overloaded that I didn’t even see one of my friends, who brought her husband and son to the Opening. I didn’t know she was there at all, the sea of faces had melted into a bizarre Salvadore Dali landscape with an aggressive soundscape to accompany. Later, without Lucy, it was even harder to focus and I had to consciously and repeatedly pull myself away from the abyss of dissociation – the out of body sensation that overtakes when I am in overload. It was a day of positive social interactional vibes, but my senses just aren’t designed for this kind of activity. Especially not when I cannot have Lucy with me.

Good Night, Every Bunny!

Lucy is now fast asleep in bed next to me. The little fragments of my Being are slowly shifting, shuffling and scuttling back towards each other, slowly joining and melding, slowly mending, inside this Clement Space of ours – just Lucy and me. The best soundscape in the world for shattered nerves? The rhythmic rise and fall of my Angel’s breath.

Good night, Every Bunny! And thank you my dear friends for helping me get through an actually really truly lovely day.

five-four

Today was yet another brain melt day, I have been having a great deal of these lately – triggered no doubt by the combined crush of lack of intellectual and creative stimulation, too much stress from trying too hard at everything apart from engaging in real creative work (which includes research, not just art, which I love), overload of weariness from advocacy (often this means preaching to the un-convertible), and the ironic lack of empathic understanding from even the most well-meaning non-autistic ‘autism experts’, who, despite their book knowledge and claims of having worked with autistic people for x number of years, still have little to no idea how to actually communicate with Autistic people according to our intrinsic styles. It is always us Autistics who have to bend, bow, wriggle, wrangle and perform grand calisthenics in order to reach out to the normative. It’s no walk in the park, trying to make ourselves understood – ironically, the ‘autism experts’ seem sometimes the least capable of comprehending us (not always, I am glad for the wonderful allies I have met and with whom I work). Blame it on the rigid (oops, aren’t we Auties the ones who are supposed to be inflexible?) stubborn adherence to the Medical Model, perhaps?

Anyway… Mental exhaustion, emotional depletion, and sensory-physical devastation can have crushing effects on a hyper sensory Autistic Bunny. Too debilitated to even cook for myself and too out of linguistic spoons to instruct our helper to cook for me, I decided to order in my lunch via FoodPanda delivery. As with almost all Asian (especially Chinese) food, it tasted better than it looked. (With the exception of Japanese cuisine, which looks every bit as delicious as it tastes!)

Then, while going through some work-related emails (as the food gurgled it mushy way down my digestive tract), I was reminded to look again at Damian Milton’s video on “Double Empathy”.

I love Damian’s work, he has done a great deal of work in the area of empathy, and I also like his dry, deadpan humour. I won’t add further to this excellent talk, but just to insert in here that somehow, my brain zipped and zapped a connection with this other thing, seemingly unrelated but yet it is, because Damian did mention music as a communication… Here we are…

Why “Take Five” by Dave Brubeck? I seriously do not have a ready explanation, although I am sure there is one if I dug deep enough. For now, my brain isn’t working in the conventional way, so I’ll just say that’s just the way my brain works. Seemingly bizarre connectivities. But sometimes exquisite!

No prizes for guessing what rhythmic time signature my brain worm is gyrating to now.

(un)broken

This morning, my precious Octopus mug handle was broken by the cleaning lady. It was a gift from a dear friend, bought from a little shop in Covent Garden in London, and it’s traveled with me across many cities and different continents through its 30+ years of existence in my care. Intact. Today, I felt a part of me had fragmented together with the demise of this innocuous object. I can hear the neuronormative puffing and huffing, “Come on, it’s just a mug handle, get over it!”

Well, I am Autistic. I used to become intensely disturbed and distressed when someone so much as moved my pencils in my pencil holder. Neuronormative ‘expert’ observers of Autism label this “meaningless” or “obsessive” adherence to order, because we autistics are supposed to be craving some kind of malevolent “control” over our out-of-control environment.

The “out-of-control” part is accurate, but the “control” part is rubbish. What the normative ‘experts’ – professionals making good money out of us in the autism domain, and normative-minded parents spending a lot of money on non-autistic devised autism ‘interventions’ – do not know, and/or are not ready yet to want to know despite us autistics telling and telling them (though this is changing slowly) is that many hyper sensory Autistics like myself inhabit a realm that is far more exquisite than the noisome pestilence-filled domain called “normality”. We are connected to the vibrant matter around us in ways that normative minds may never be able to grasp, even some Autistics who’ve been so successfully brainwashed and ‘corrected’ by various behavioural mental programmes into becoming pseudo normatives, because they have sadly lost touch with this beautiful part of their embodied existence.

You see, this “just a mug handle” is part of the finely balanced, natural elemental ecology that I call my intimate abode. It’s not that kind of bizarre Svengali-like “control” that the normative minded pronounce us to have. Perhaps, because normativity can only understand this limited concept? Instead, it is a harmonious, gentle, generous, rich and grace-filled connection one small detail with another, molecule by molecule, whisper to whisper, heartbeat to heartbeat, that embraces us. If one component is out of place, or crushed by violent normative callousness, then the entire living ecology cries out in pain. Imagine, if your finger were crushed or cut off, will not the rest of your body scream and thrash? Why, then, are we Autistics punished for our intimate connections just because the normative have no such inkling of Being? (I’ve explained this in my PhD dissertation, under “elemental empathy” – please visit my official website if you want to read and learn more.)

“Get over it!” – sure, I shall, in time. But your finger… you know, that part of you?… if I break it, how soon will you “get over it”?

Executive function failure: I was unable to even insert money properly into my wallet after that incident. My heartbeat is going at a racing pace, the over-exerted organ pounding against my ribcage as if it is trying to escape. I am sitting next to Lucy, inhaling her comforting aura – which includes aroma, fragrance, physical and spiritual radiation – trying to calm down.

Today was supposed to be my rest day, I allocated time to do peaceful, restful, rejuvenating tasks that are for me, by me and help me to recover from having to comply and perform to the excruciating demands of neuronormativity in the last few weeks and months. I have to try and make the most of it now. With a part of me, and extension of my Being, violently shattered.

Wouldn’t you guard your fingers and toes if you’re working and living in an assaultive environment? That’s just what us Autistics are trying hard to do. Yet, you intervene with your behavioural therapies to force us into a catatonic state of numbness and disconnect with our most beautiful modalities. Dear Normative / Allistic people, please don’t punish us Autistics for your own lack of sensitivity and connectivity.

Who is empathy impaired now?