communication as access & inclusion

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clear communication is access & inclusion

Clear and direct information is the autistic person’s access to the human world. Neuronormative communication is confusing and extremely anxiety inducing. Questions go unanswered, conversations are left suspended in mid-air, semantic meaning is vague and the autistic is supposed to be the one with the communication impairment?

Communication is respect. Clear communication is like a well-built ramp for a wheelchair user to access spaces that are otherwise inaccessible. Without clear and timely communication, the autistic person is made to crawl around the floor with no idea where the entrances and exits are, crawl up the stairs and still not have any confirmation of exact location.

Communication is access and inclusion too, in case people forget. What is important is not always visible or physical. People who work in disability focused fields need to remember this. It’s not always about wheelchairs.

(Photo: assorted multicoloured wool pompoms)

direct

Alien Invasion - Lucy & MiniB

Why do I love dogs? Many many reasons, too much to unpack, really. Maybe some day I’ll write a book. Well, actually, I’ve already touched on this in my PhD dissertation, haven’t I? But who reads these things anyway – longwinded dissertations, I mean?

One huge issue I have with the human world is the lack of direct, clear communication. Even with the most well intentioned. And far too much talk, talk and more talk. Words have a way of creating chaos in my brain. People spew words that are ambiguous, poorly constructed, and then become irate when their words are misunderstood.

Dogs are different. They don’t bother to mess around with bizarre vague social meanderings, no dancing between the lines, no illogical ‘protocols’, no furtive agendas that have to be kept hidden, no subterfuge – just blunt honesty.

In this photograph, Lucy and Mini-B are asking for chicken. Isn’t it obvious? Those faces, and the body language. They look like little alien creatures demanding to be given something – and that something in this case happens to be bits of boiled chicken. Chicken is their favourite, next to Loyalty Pet Treats Chewy Roo strips, of course. Now, that is the kind of social communication that does not stress or shred my nerves.

Sadly, reality bites – I am human after all, and I still need to gyrate together with the rest of confusing humanity and our human words, words, words, even when everything is more than merely slightly out of tune. If only our human social goings-on were just a little bit as beautiful as the music we have managed to produce.

aggression oppression

 

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I am an artist, musician and a researcher. I am not an ‘Avenger’ or any comic book hero. I am no sword-wielding warrior. I am merely a reluctant Advocate – I dream of a world wherein there is no more need for disability advocacy because disability will just be accepted and embraced as part of natural human diversity – but I know advocacy is crucial in the here and now, else we the disabled will never have equity and autonomy. Without advocacy, I would not be able to practice my art, music and research, because of my known disability. Continue reading

five-four

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Today was yet another brain melt day, I have been having a great deal of these lately – triggered no doubt by the combined crush of lack of intellectual and creative stimulation, too much stress from trying too hard at everything apart from engaging in real creative work (which includes research, not just art, which I love), overload of weariness from advocacy (often this means preaching to the un-convertible), and the ironic lack of empathic understanding from even the most well-meaning non-autistic ‘autism experts’, who, despite their book knowledge and claims of having worked with autistic people for x number of years, still have little to no idea how to actually communicate with Autistic people according to our intrinsic styles. It is always us Autistics who have to bend, bow, wriggle, wrangle and perform grand calisthenics in order to reach out to the normative. It’s no walk in the park, trying to make ourselves understood – ironically, the ‘autism experts’ seem sometimes the least capable of comprehending us (not always, I am glad for the wonderful allies I have met and with whom I work). Blame it on the rigid (oops, aren’t we Auties the ones who are supposed to be inflexible?) stubborn adherence to the Medical Model, perhaps?

Anyway… Mental exhaustion, emotional depletion, and sensory-physical devastation can have crushing effects on a hyper sensory Autistic Bunny. Too debilitated to even cook for myself and too out of linguistic spoons to instruct our helper to cook for me, I decided to order in my lunch via FoodPanda delivery. As with almost all Asian (especially Chinese) food, it tasted better than it looked. (With the exception of Japanese cuisine, which looks every bit as delicious as it tastes!)

Then, while going through some work-related emails (as the food gurgled it mushy way down my digestive tract), I was reminded to look again at Damian Milton’s video on “Double Empathy”.

I love Damian’s work, he has done a great deal of work in the area of empathy, and I also like his dry, deadpan humour. I won’t add further to this excellent talk, but just to insert in here that somehow, my brain zipped and zapped a connection with this other thing, seemingly unrelated but yet it is, because Damian did mention music as a communication… Here we are…

Why “Take Five” by Dave Brubeck? I seriously do not have a ready explanation, although I am sure there is one if I dug deep enough. For now, my brain isn’t working in the conventional way, so I’ll just say that’s just the way my brain works. Seemingly bizarre connectivities. But sometimes exquisite!

No prizes for guessing what rhythmic time signature my brain worm is gyrating to now.

fools & horses

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Little Saraband – Lucy Like-a-Charm

So much fluttering the past couple of days around social media, on my feed and that of others. Someone really quite brilliant once confided in me, that he feels an overwhelming sense of loneliness because few people are able to properly understand what he is conveying to them. It is a lonesome space to be, when one is extremely intelligent and intellectual, I suppose? I won’t know. I’m really not all that clever, but painfully few people fully grasp my communications too. Maybe my friend and I are at opposite extremes? I don’t feel lonely, though, because I have Lucy. No need for words between us, though being human I tend to use words a lot. She knows what she knows, and what she knows is enough for me.

My friend said of me, that I do not suffer fools gladly, but perhaps he is wrong this time about why. I merely despair because humanity seems hell bent on folly, while riding rigid-backed upon nervous horses on stilts.

Too many words flooding my brain lately. Maybe I am the greater fool after all. I’m happy inside wordlessness, and it’s once more time to repair frayed nerves, so I shall take my leave from here until my human ego and folly returns yet again with more words to scatter.

Fools. Here’s a song I wrote and recorded in 2000. This version is the instrumental, without words, but today, just the music is enough conveyance.

https://soundcloud.com/dawn-joy-leong/fools-instrumental-version

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

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