what the spoon?

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Photo by Dawn-joy Leong. Please do not reuse without prior permission, thank you!

I’ve said many times I am a reluctant advocate. I wish there was no need for vigorous advocacy – because this would mean that society has progressed to a place where people (at least the majority) are not only aware of differences in embodiments, but actually actively embrace and practice the effort of empathic reciprocity across divides. Peace. That is. Empathic resonance inside a Clement Space of Peace.

Autism Advocacy is one of the fiercest, most contentious arenas in the disability field. I cannot think of any other disability that is so copiously mired in greed, personal ambition, powerful corporate agenda and human pride and prejudice. And I do not mean only the vested interests of the Neuronormative World. Autistic persons also take advantage of this platform to further their own ambitions. And why not? Since the arena is a free-for-all dominated thus far by non-autistics, why can’t Autistics now use their own platform to further their aspirations for whatever it is they yearn? Money? Fame? Employment? etc.

I’m the last person wanting to set a moral tone. My protest has always just been that of tiredness and utter disappointment in humanity – regardless of neurological identification.

The one thing I am learning from all of the churning, heaving and tumultuous goings-on is this: everyone – myself included – has an Agenda. But not many – neurotypical, neurodivergent or autistic – can truly understand when an agenda departs too far from their ‘norm’ – their sphere of thinking. Who’d believe that I have done all these rather radical things, exposed myself in such grandiose and sometimes even bizarre ways, pushed myself to the very edge of my perimeters, just for a naive and simple agenda?

Singapore.

People repeatedly ask me if I have gained higher professional standing, garnered more paid employment, and generally benefited in positive ways, as a result of my many public appearances on television, in the news, etc. My honest answer is no. All my professional achievements have been built upon the foundation that I had painstakingly laid years before I returned to Singapore. A decent portfolio of solid work. Relationships built upon straight forward decent hard work and trust, humility to learn from those who dared and bothered to teach me, and a lot of patience. Nothing to do with the superficial ‘stardom’ that people see. That – the media presence, the pomp and ceremony somewhat crass even – was all for the sake of Autism Advocacy, and if anything, I have suffered personal loss as a result.

Dealing with neurotypicals in the autism platform, I am met with suspicion and the usual jaundiced eye, not to mention patronising condescension and tokenism. My ‘unfiltered’ communication style has earned me a reputation – not necessarily a welcome style especially not at all in Asia. This is my so-called “social impairment”. Yes it is a serious impediment here. Don’t forget also the dodgy snake-oil peddlers and ‘cure’ brigade whose toes I have trodden on in my fight to inform and educate. On the other hand, while dealing with autistics, I have met with petulance, inflexibility and a puzzling determined absurdity, almost echoing of the stereotypes slathered upon us autistics by neurotypicals that I have been trying hard to debunk. Holding open heavy doors to learning opportunities, I am met with autistics grumbling about their $2 spoons, and various other permutations and combinations of such. Oh, and the competitive jealousy and envy too. From both sides of the Grand Neurological Divide. The catch phrase shared by all – neuronormative or autistic – when called out (and even when not called out, they actively and vehemently volunteer this snippet of wisdom):

“I’m only human.”

I despair. Too much – too often. What about my humanity? What about my spoons? I do not know what to feel or think, to be honest. All I do know is, more and more, I am driven back to hankering for my childhood dream. My Original Agenda, if you like.

When I was a child, at the teeny itty bitty age of six, I had already identified this sense of hapless hopelessness in my own reaction to the human species and human constructs. My dream at the time was to create a Utopia – just me and my animals, living in a cave deep inside nature, far from human intervention. Of course, that was ridiculously naive of me, and as soon as I became aware of the necessity (to me) of running water and flushing toilets, I abandoned that dream. (Yes, I even studied how to make my own toilet but it proved too daunting due to my hyper olfactory senses.) But the spirit of this yearning has stayed with me throughout my life, a longing for an impossible Clemency of Space.

Three years on since my return to my beloved homeland, I am truly happy that I did what I did, with the help of many key mentors and supporters within Singapore and overseas. And I am eternally grateful for the friends – loyal people and wise – whom I have undeservedly gained. But what I have been unwilling to admit – until now – is that the personal price was a heavy one. Apart from being variously mistaken for someone who is seeking attention and vain-glorying, or a militant ‘Autistic Threat’ out to take over the world, I realise that in my thankless quest for this nebulous “peace” agenda, I have neglected other things I hold much dearer to my heart. I have neglected good friends, and the one Being most precious to me – Lucy. And I have faltered in my own pleasurable and soul enhancing pursuits of art, music and research – my own Autistic Joy that nourishes me and builds me up from inside out. I guess my throwing all my Spoons on this advocacy mission, vision or whatever else one wishes to call it, has been my own downfall. This was my Grand Agenda for three years. An impractical one, I know. Impractical and impracticable it seems. But the dichotomy is this:  I am an artist, a musician and an academic at heart. So dreaming isn’t really something I can just will myself to stop doing. It is inexorable as the process – a life of its own. As for those damned Spoons, ah well, c’est ma vie. Win some and lose some – spoons will be spoons, humans will be humans, and I shall always prefer dogs.

Regardless. It is time for me to refocus on what really matters: ‘world peace’, ‘the greater good’, bridging the Neurological Divide, ‘Nothing About Us Without Us’, and all that stuff sounds amazing and lovely, even seriously valuable, but I must not forget that I owe a monumental cosmic debt to Lucy. And it is one that if I do not start trying to repay now, I will lose this Divine Opportunity for Grace forever. Lucy grows ever older as I run around lavishly spending our spoons helter-skelter – yes, you read correctly, these spoons belong to Lucy too and I am spending them on everything other than her. Humans are intrinsically selfish. Aren’t we? I am blessed to have such a patient teacher and mentor as Lucy Like-a-Charm. So, all the more, I must not betray her faith and trust in me. I owe to this unassuming, wordless creature my very life. Again, something very few humans are able to come close to grasping.

Onward Spoons then, Tally Ho! The Spoons are marching ever forward – but now with a Renewed Agenda, and rightfully so. Woof! Spoons for Love! Spoons for my Canine Angel. Yay to Spoons! Our spoons! To spend on Us!

ingannation

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ingannation
(IN-gah-NAY-shun)
Noun:
-A cheat, trick or clever deception.
-The act of making someone believe something that is not true.
-The act of deceiving someone.
-The fact or condition of being deceived.
-Something that deceives.
-An act or statement intended to make people believe a falsehood.

Archaic – origin unknown.


 

I promised my good friend Rick that I’d make good use of this word. So, here is my take on the old, obsolete word, now démodé.

I’ve been thinking about lies and deception today. What is the most prominent, most soul crushing feature of my recent journey that focuses so much on advocacy? Ingannation. Continue reading

activism, advocacy vs clement space

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Yawning angel

This Autistic Bunny is not mired in meaningless repetition from “having autism”. This Autistic Bunny is mired in frustrating, seemingly futile repetition due to the utter lack of empathy and/or regard of the non-autistic world. Especially the ones who congregate around the money-spinning, job producing, status boosting Autism Bandwagon. Armed only with the medical model and little to no understanding of lived-experience, they declare themselves ‘experts’ and sell their ‘expertise’ in myriad ways to desperate ignorant non-autistic parents, students in institutes of higher learning who start off wanting to do good and make a difference, peers in academia who know nothing so just readily accept the viewpoints of these ‘experts’, and politicians in positions of governmental power.

What kind of ‘Autism Crisis’ is this? Not created by autistic persons for sure. But autistics are trying their best to clear the flotsam and jetsam that is being tossed around in seamless repetition by the non-autistic world. How do we even move forward one step at a time, when each step is a perilous risk?

To be clear, I say this again. I am not an Autism Activist. I advocate, somewhat passionately and vigorously, only because there is so much rubble strewn across each and every pathway that I need to clear the rubbish before I am able to venture forth. One just cannot safely and smoothly walk along paths that are chockfull of hazardous waste. I am no expert in bomb disposal, and I’d much rather have safe spaces to live in so I can focus on creating my art and doing meaningful workshops to help people, but what else can I do if the way forward is a minefield? Each day, I feel I am neglecting the very Being that is keeping me alive, giving me sustenance in a way no human creature ever can. I long to retreat into that space of clemency where I can commune with my Lucy in our soul enriching elemental empathic way. Yet, I have to sally forth into that awful domain of autism advocacy, speaking the truth where nobody dares or wants to, and all just to ask for basic respect and true inclusion.

I do worry about being blown up someday by one of the mines I am trying to clear. I do this for myself, for other autistics, and mostly to benefit the next generation. 

What kind of world do you hope for your autistic, neurodivergent and/or disabled child to live in, what kind of tomorrow? Today is not good enough. We need to work on a safer, gentler Neurocosmopolitan world.

…. yes… But what am I doing to and for the Pulchritude that lies in my bed so steadfastly preferring life-giving energy to this tired autistic soul? I owe her a debt I am never going to be able to fully repay. My Lucy Like-a-Charm.

no rest for the weary?

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Food reflects culture and mental states. Especially the meals of a foodie. My breakfast this morning was a combination of effort at Self Cheer and textural visual reflection of a dull aching oxymoronic state of throbbing-melancholia. Soft boiled egg with mayonnaise and plain yoghurt on a bed of cheap Aldi bacon (microwaved for less olfactory intrusion) and spring onion sprinkles, accompanied by cheap Coles coffee laced with cheerful caramel chocolate. The aroma of the caramel was balm to my sensory discombobulation.

We had another rough night. No rest for the weary. The Door Slammer kicked off the fabulous evening with a supremely noisy party. Her visitors traipsed in, announcing their arrivals with less pomp than raucous ceremony, then the customary now obligatory door slam to welcome each one’s initiation into invigorating zest for Extreme Neurotypical life. Then came the cacophony, introduced by loud out of tune singing of Happy Birthday, then variations on a trio-theme of Shriek-Scream-Guffaw. In and out they went, revitalised no doubt by every sharp slam of the door. No, I was not standing outside. Our units are separated by several feet along a corridor. My door was closed. But I could hear ever single sonic embellishment. Then, thankfully, towards midnight, there was a mass exodus to another party venue, and although the exit was marked by brilliant screeching coloratura and booming basso continuo, I heaved a sigh of relief.

However, my peace was short lived. Continue reading

D flat

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D flat and F sharp are the two most difficult tonalities for me to play on the piano. Is it just psychological? I don’t know. I have never been good at sight reading, those black notes dancing around on a page, just like too much text, but more visually attractive. As if my note reading handicap weren’t bad enough, too many of those black keys give me the shudders. No, it isn’t an Aspie thing, it’s just me being not very high functioning. Continue reading

moxie musings

breakfast inspiration

breakfast inspiration

Today’s breakfast was less weird. Avocado, anchovies, chopped red onion and tomatoes, olive oil. That is it. Brain food? Maybe. Whatever the case, this yummy breakfast has indeed set some thoughts in motion.

For me, and most Aspies with a passion for some subject or activity, almost everything in our lives can be constructively linked to our intensely-focused interests. Even the most horrendous experiences, once overcome and dusted off, linger on forever as pieces of analytical and inspirational fodder for my work. Continue reading