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

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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

Mother’s Day again

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It is Mother’s Day today in Australia and many other parts of the world. The media is having a field day, of course. Though not as rabidly frenzied as during Christmas, social media is literally cluttered with cute-cute love-love sweet-sweet Mother’s Day posts, shops are awash with Mummy Love paraphernalia, and well, you know the scenario – a literal pyrotechnic bombardment of the Greatness of Motherhood fills the mental, emotional and physical landscape.

Here, in our tiny microcosmic corner of the vast universe, Lucy and I have enjoyed yet another beautiful day together. Continue reading

viaducts

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Soggy dissipation. It isn’t cold, why are my legs screaming so? A tight, wet, cold cast is set around legs and feet, so tightly bound, frozen pain pounding at the walls, crying to be set free. Continue reading

cloudy

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Lucy is my Angel of Clemency.

[This is not a Pity-Party Poor-Me post. I am voicing these thoughts because I hope that there will be greater awareness and understanding of the conundrum faced by autistic people who struggle to live and function within a system that is largely alien to our innate make up. It is not a grumble either. There is no “Us vs Them” anymore in my mind. I strive for Neurocosmopolitanism – a coming together and blending of minds – rather than to emphasise the divide.]

After two days of intense sunshine and heat, last night, it finally rained a little. We woke up to cloudy skies and a relatively robust wind. I have a love hate relationship with robust wind. On one hand, I love the refreshing feeling of a good cool breeze, the way it skims over my skin in a firm, passing yet continuous caress, but my auditory senses become increasingly stressed by the cornucopia of sounds that the wind stirs up. Rustling leaves are delightful, but my senses can only absorb and contain a limited volume – decibel level, frequency and yes, ‘volume’ as in capacity – before becoming overwhelmed. Continue reading

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