just sayin’

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Agedashi Tofu and Speaking Through the Body by Lucy Like-a-Charm

This morning’s rambling spinning thought processing (involuntary) brain exercise is about words. Ironically, I have to use more words to express my despair of wordedness.

As an Autistic person, as well as a researcher and practitioner in the field, and inevitable advocate, certain words people use to refer to Autism affect me greatly.

Autistic. Not Person-with-Autism. Our neurology is not a handbag we carry with us, or a handy gadget to wield as and when our fancies strike. The vast majority of autistic persons now prefer to use identity-first language, and it is the choice of official Autistic advocacy, yet, the neuronormative world is steadfastly refusing to respect this. Why? Because they think they know better. Words are little missiles containing perception and attitudes. When a person insists on delivering words that hurt, even when repeatedly told to refrain or

Using Autism as a derogatory slur is becoming more and more rampant too, for example, “That’s so autistic!”. And lately, celebrities who have been caught for heinous deeds have been wielding the deficits-focused pathological descriptions of Autism to excuse their vile behaviours.

Meandering onwards from the above mental rumblings, onto more about Words. Words. Words everywhere. Continue reading

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gaseous exudations

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Respectful social communication 101: In this day and age of technological advancement, there are multiple ways to communicate. If a person (with or without disability) tells you their preferred mode of social communication, please respect it, that is, if you wish to communicate with the person. Insisting on your own way and disregarding that person’s repeated requests is nothing but utter contempt and disrespect. Simple.

Communication is a complex effort. However, respect can be a really simple thing.

Sadly, there are people who just cannot connect in a straight-forward way, with mutual regard, across respectful space. I’ve come across many such folk along my more than half a century of traversing the hazardous human social-scape.  Continue reading

creating clement space

 

As the BIG Anxiety festival draws ever nearer, I am plunged into a flurry of making, musing, more making and more musing. While crafting the installations for Clement Space in the City, contemplating the concept itself, and trying to find spaces of clemency along the way, an old song of mine wove its way into my consciousness.

The road is long and the dark night is lonely“… A line from one of my songs, “To Touch the Edge” written and recorded 1998/1999. I did not realise it at the time, but it was a plea to find Clement Space: a place – mental and/or physical – where mind, soul and body may dwell, even for a few brief moments, without threat or assault to intrinsic Beingness. (Click on title of song to access on SoundCloud.)

Days are now filled with the sensory textures of netting, organza, cotton, linen, yarn, thread, pinpricks on fingers, and the whirring gargling rattling of my mother’s trusty old Singer sewing machine. Continue reading

wordless enunciation

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angel unspeaking

My Angel cannot speak the worded language. Yet, I know she tries to tell me things. There are times I am tuned in and able to sense, just by touching her, watching her eyes, her mouth, her body, but there are times when I am sadly oblivious, lost inside my own domain. Then, there are the moments of sheer terror, when she is unwell, and I am haplessly flailing, desperate to grasp her subtle wordless enunciations. Continue reading

ear

your aura is ringing in my ear

soft rotting vegetables

painting nausea in the corner

a room full of sweat beads

dancing merrily

bouncing

on fine tentacles

wordless interlocution

hairs embedded

crackly long nails

scratching screeching

ouch! it is painful!

though it’s your skin

not mine

yet my ear

hurts

in

enforced trespassing

someone

Someone to Watch Over Me

It’s not easy bobbing around on the surface of Scheherazade’s Sea. Sensory challenges are a huge feature, contributing to 90% of my existential struggle. However, if I was asked if I would give up my autistic embodiment for a life without piercing acuity of this nature, my answer would be a very vehement and resonant, “Of course NOT!” The 10% of wonderment is indescribably precious: so intense and rich in its tapestry and multidimensional juxtapositions, that realm is what many people can only refer to in dreams and fictitious stories, yet it is reality for me. And I have Someone watching over me for this part of the journey – an Angel Hound! Continue reading

vomitus

pigeons

It is a damp, cold, spring morning. The pigeons are still bravely cooing despite the rain, and I find my mind contemplating the flotsam and jetsam bobbing, shuffling, jostling and heaving in the social seas. People with verbal diarrhoea. People who spew words willy nilly. People who speak the truth. People who cannot tell the difference between truth and lies. Gullible people who seem really smart. And savvy people in cleverly woven cloaks of false innocence. And, of course, the social measurements attached. Continue reading

word-spinning

Weaving, spinning, crafting words all week. Today, my brain decided to grind to a halt. No more words, please. The sky needs no explanation. And neither does Lucy’s beauty.

Word smithing is a very important part of my life, a key to my survival in a world full of words – from meaningless, vapid chatter in noisy social parties, to wave upon wave of ponderous academic parlance, words are such an essential aspect of neurotypical life. There is so much to say and not enough words to say it all with.

This is when we should look at different communicative channels, different paradigms for expression and conveyance of meaning. Is it so necessary to “talk words” so much? Music and all its tonal-rhythmic-patterned richness can be a language that transcends  the weighty worded domain. Just as our senses may provide yet another realm of communion with Beingness. Continue reading

elemental empathy

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Daylight Saving is no more. We woke up as our bio-clocks whispered, regardless. I don’t ‘hate’ daylight saving and the changes as much as some do, I just take it as part of the roller coaster wonder-ride that is life.

And that is…

My head is still wanting to explode, my lower limbs still screaming, the new additional thematic wriggle to the raging two day epic Silent Cacophony are several large mouth ulcers pounding away. We had a rough night, the wind howled and rattled the atmosphere, Lucy tossed and turned, I could hear her tummy rumbling, she cuddled close all night, leaning into me each time she got up and settled back down (which is unlike her because we both don’t like cuddling when sleeping). I rubbed her tummy. We got up, it was still very dark, but we did enjoy a calm morning walk, despite the heavy soggy air – at least it isn’t raining anymore. Micturitions and excretions all completed, we trotted home to the rhythmic chant (by me), “Hungry, hungry hippos, we’re hungry, hungry hippos!”

Then, just as I was about to tuck into my sammich, Lucy threw up her breakfast onto the shag rug. I don’t mind at all, the shag rug, that is. I am concerned about Lucy, though. Lucy is more important to me than any material thing, or person, actually. She stared at me, laying by me, as I vigorously cleaned the patch. I reassured her she was still mumma’s good girl, but she looked unsettled. Continue reading

mosaic

I am down with the flu, along with being just down. A vicious cycle really, as I find that although this affects everyone, the mind-body connection is ever more cogent in autistic individuals, However, while some people are looking to rid themselves and others of autism, I cling on to my own functional ability and embrace it, because being me is very precious. I only wish I could be less affected by my physical comorbids, but then again, would that still be Me in totality? I am not sure. I guess nobody wants to be always in pain.

I read this post by Aspie blogger Lynn Soraya today. It was first published in 2010. In this post, the writer describes her father’s peculiar way of communicating via so-called ‘unoriginal’ channels of borrowed words and phrases, as a kind of “mosaic.” Three thoughts stand out in my mind above the plethora of other threads and buttons. Continue reading