activism, advocacy vs clement space

100T5459-lucy

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.

Autistic Thriving

 

“How can autistic and non-autistic people grow and thrive, not despite but because of the unique features of autism? And what can society learn from autistic persons?”

Lucy and I shall be at TEDx Pickering Street this Saturday 4 August 2018, talking about autism and neurodiversity. Come join us!

…….

[Autistic Thriving – Dr. Dawn-Joy Leong]
There is a great deal of ‘awareness’ these days about Autism – mainly from non-autistic observations. However, where are the Actually Autistic voices in this cacophony of opinions and interpretations? What is it like to be autistic? Discover how Dawn learns to thrive within her autistic ecology, not despite but because of her autism.
Grab your tickets here: https://tedxpsthrive.peatix.com/
.
[自闭世界的生意盎然]
自闭症在当下取得了广泛的关注,只不过这些观察结果都是从非自闭症患者角度获得的。可是抛开这些不和谐的观点和解释,我们从何听到自闭症患者的真实发声?作为一个自闭症患者是什么样子?在这场演讲中,Dawn会向我们分享她是如何在患有自闭症的情况下茁壮成长。

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

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

IMG_6641-vintagelamp

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