ancient voices

Disabled by the ability to perform the Other, at expense to Self.

The more energies spent on perfecting performance as Other, the less strength left to exist in Self.

Self is dissipated, disengaged, and exhausted

Inside this space, this hollow interstice, Self becomes nothing.

Un-performing is desperately necessary, to peel away rigid, harsh layers of coarse fabric. It is a difficult process, even excruciatingly painful at times, because these binding cloths so tightly wound have melded into growing flesh. Stubbornly embedded foreign bodies, artificial corns and callouses interwoven. Which is artificial, which is nature now? Nobody can tell, not even the disabled Self. Yet, that longing for Being, that yearning for a clement space of empathic resonance and elemental connectivities, is so deeply entrenched in our spirits, the Ancient Voices of our nascent souls.

Survival is paramount. So the decapitated and maimed carry their appendages in glass bottles, like ancient Chinese eunuchs, cringing silently in grandiose palatial hallways, scuttling to and fro, agony hidden, even festering in gilded cages.

“Ancient Voices of the Children” by George Crumb is a haunting work, featuring selected poems by Federico García Lorca. When I first heard it at the age of 19, as a music undergraduate student at university, I fell deeply in love with the music and poetry. Even then, undiagnosed, it spoke to me with such cogent poignancy. Will the autistic soul ever truly find their lost voice? The King of the Crickets has commandeered it.

The Little Mute Boy

The little boy was looking for his voice.

(The king of the crickets had it.)

In a drop of water

the little boy was looking for his voice.

I do not want it for speaking with;

I will make a ring of it

so that he may wear my silence

on his little finger

In a drop of water

the little boy was looking for his voice.

(The captive voice, far away,

put on a cricket’s clothes.)

**

“Ballad of the Little Square”

My heart of silk is filled with lights,

with lost bells,

with lilies, and with bees,

and I will go very far,

farther than the seas,

close to the stars,

to ask Christ the Lord

to give me back

my ancient soul of a child.

 

Federico García Lorca – 1898-1936

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anxiety at the BIG Anxiety

Big anxiety at The BIG Anxiety Festival!

Some of this narrative was introduced in my previous post, about Food Markers, but this ramble here is a kind of variation on the theme, from a different angle.

This 2017 working trip has been fraught with dramatic ups and downs, and here’s my as-brief-as-possible review of the Grand Experience, months afterwards. Beware, ye grammar-sticklers, I do move rapidly between tenses, because I am unfolding the unfolding as I am experiencing it, in the now, in the then, and in the next. And that, too, is my Autistic Bunny Authentic Experience-ing. Continue reading

function

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I can do a whole lot of things, and superbly well too. But autistic executive dysfunction is a very real thing, and I need help with the simplest stuff, without which, I am unable to do all the marvellous things as marvellously as I can. Autistic persons need support, no matter ‘where on the spectrum’ we may seem to be. That is why functioning labels are harmful. Stop referring to us as ‘high’ or ‘low’ functioning, we are autistic, we are humans. Start trying to understand how you can support us to do the things we can do well, so that we can in turn help you do the things you cannot do well.

support

This article is gold. It describes my own struggle succinctly without fanciful embellishment.

Here, in this video, Sonia gives an excellent summary of what I am facing right now. Thank you. This is why I keep reiterating the need for support and concrete help, though the neurotypical world tends not to understand the import of need, because they see only the autist’s ability to function pretty remarkably in the normative realm, and hence the juxtaposed disabilities are not discernible to the normative way of perceiving and analysing information.

In short, the world does need all kinds of minds!

reboot

Four months of chaos, disorder, sensory assault and social dissonance. The autistic constitution can only be this much resilient. I wonder often how much an average neurotypical is able to endure the same dimensions, levels and consistent torture – and do so with the panache and persistence that many of us autistics execute on a daily basis?

Time to retreat and reboot. If only for a mere four and a half days.

Saturday bruncheon with Rick at our favourite Not Just Coffee – nourishing noshment and conversation, providing vim and vigour for the adventure ahead. It was so good to be back in our old neighbourhood of Paddington too.

Continue reading

all about me without me

photo-2

silent sonnet

A music symposium about music and disability, but no musician with disability represented. No voice of our own.

A prestigious art-work about disabilities, for people with disabilities, but not a single artist with disability in sight. All very ‘high-quality’ mind you, as if to say that disabled artists do not and cannot produce works of similar ‘high quality’ to serve our own community? No voice of our own. Continue reading

a name I call myself

There does not seem to be an equally heated (and ferociously foolish) argument in any other context within the normative social sphere about what people wish to call themselves, so why is identity-first vs. person-first preference in autism such a ridiculously aggrandised and dramatic squabble among non-autistic persons?

All in the name of political correctness, which is such an irony that the non-autistic PC (politically correct) police do not seem to understand – or just stubbornly do not wish to acknowledge. (The latter is far more sinister than the former.) Surely it is more politically incorrect to insist on calling someone by a name they DO NOT wish to be called by? Is this a conspiracy of the deficits-focused overground social colonialists fearing an eventual autistic world domination (should they as much as acknowledge us for what we wish to be recognised for), or is it just plain and simple flabbergasting ludicrousness?

Right… why the rant? Well, it sort of builds up every now and then, like those giant cyst-like pimples that come and go, as nature’s way of blighting your life, you know those? Usually the culprit is my terrible penchant for reading comments on FB or blogposts, and getting caught up in the horrific pompous ignorance displayed by the general non-autistic populace about autism. Sometimes I do try to put in my two cents’ worth of advocacy / education, but mostly, I just become upset and do this babble-rant thing.

Here’s my most recent one (rant, that is):

Hear ye! Hear ye!!!! People! People! People! EDUCATED people! Educated people who work in the disabilities field! Educated people who work with autistic people! HEED THIS PLEASE!!!

We are autistic. We are not ‘persons-with-autism.’ Unless the individual specifically tells you they do not wish to identify as autistic (and I do have a view on this but it’s not part of my rant), then PLEASE do try your very best not to impose your preconceived notions of what is respectful or politically correct on us. Give us that amount of respect to know what we wish to be referred to, please, please very kindly.

If you really wish to be politically correct, then PLEASE go do some research on current political correctness!!! The internet is available to you, the information is free and readily accessible! From ASAN, autism advocates’ webpages, to (yes, gasp!) recent research studies in neuroscience (check out Michelle Dawson – an actually autistic researcher – gasp gasp gasp!!!) !!!!!!

Non-autistic people claiming to be experts/professionals working in the field of autism can often (not always but often) be the MOST annoying know-it-alls. Next up are the self-styled ‘educated’ folk who try to tell me, an autistic person and researcher in the field of autism with an almost PhD, what I should want to be called!!!

AAAAAAAAAAAARGH!!!!!!

—- Rant brought to you courtesy of the wonderful internet and my silly tendency to even bother to read the comments that people vomit out as a by-way-of reflex activity (not unlike burping and belching) underneath some really wonderful FB posts about autistic persons —-

Oh hey, here too is my own take on the grand circus that should not be: Identity First by Dawn-joy Leong.

The video clip? Well, that’s just a stim that stuck in my head, added here for whimsical weird effect, ala Bunnyhopscotch twisty humour. Enjoy! 🙂

inadmissable

The UnHoly Duo Saga continues. I attended a ‘conciliatory meeting’ with one half of the twinset yesterday afternoon. She had a screaming toddler with her and a mousy little attendant who was introduced as ‘the one who answers the telephones.’

Inside the conciliation room, we proceeded to bring forth our case notes.

Once again, I was chided by this person for not declaring in my rental application form my disability and the detailed specifics of my needs.

We were there to talk about end of lease conflict (I am accused of leaving the premises in a dreadful state) but over and over, this person persists in reiterating the irrelevant – and in fact illegal – demand that I disclose my disability. The fact that she is mentally fixated on this, and repeatedly points to the beginning of my tenancy, i.e. the application form, with threats and insults, is very telling. It shows that this whole fiasco is a direct result of a long festering vendetta centred upon her repeated theme, spun out in as many twisted ways as she and her twin in this fiasco can think of. A libretto of deliberate discrimination, no less. Continue reading

windows

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Windows. Spaces. Tiny perforations.

Fissures dynamic always shifting melding moving without punctuation.

Crevices of grace.

Fleeting portals.

Once grasped, hold fast.

Breathe. Continue reading

disconnect

Another difficult morning. Waking up to overwhelming pain – physical and mental. My heart beating so fast it felt as if wanting to escape the confines of ribcage and skin. Dizziness and nausea. Lucy was there, her eyes told me she knew, and that was enough for me. She is not demonstrative in the way many other dogs are. Which is why I treasure her so dearly. She will not jump on me and lick my face to ‘comfort’ me. Instead, my Lucy Angel just lays there, touching but not intruding, gazing with a knowingness that seems to emanate from a different universe. Were it not for her, I would not get out of bed in that situation. And who have I to call for help? How many times can you call a friend to come to your aid? What constitutes a real emergency anyway?

Pain is a complex conundrum. For many people with chronic painful disabilities, pain is so much woven into the tapestry of daily life that they would need to be admitted into 24 hour care, finger on the buzzer or ear to the phone, summoning help from near and afar, if they approached their suffering in the same way as some ‘normal’ people do. For me, I may not be in as severe a situation as some other people I know, but I am nevertheless extremely grateful to have Lucy. No fuss, no effusive emotionality, no nagging, no unwanted ‘advice’ (try this or that herb / medication / exercise / filtered water etc), no expectation for social reciprocity (hello, I’ve dropped by to see how you are and cheer you up, so you should at least sit and chat with me for awhile) – just a silent witness who needs me to get up and get going.

I was listening with great empathic amusement the other evening, to my friend recounting his misadventures with a man he was dating. Continue reading