dedication

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This blog is dedicated to:

My beautiful, big-hearted baby sister and her valiant, generous hubby, and my most loyal and supportive friend YS – thank you for helping me eat better, look beyond my feet, reach out, live my dreams and keep on keeping on, knowing always that I am loved.

My canine angel, Lucy Like a Charm, who shares this wonderful journey.

walk

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We enjoyed a bracing early sunrise walk this morning.The photograph is a sample of the lovely flowers we encounter along our route. In my headspace, there were three thematic components interwoven and unfolding. Tchaikovsky’s Violin Concerto in D and Piano Concerto Opus 1, and Brahms’ Violin Concerto, also in D. Please don’t ask my brain how it mashed these three together. I am not sure how to dissemble this strangeness myself. I just revel in it, that is all. Lucy doesn’t seem to mind my occasional humming of fragments either. I literally see musical lines as moving tendrils, and my entire body thrills to the proprioceptivity inherent in this movement. And the rhythmic structures help me to walk without tripping or losing the feel of the ground beneath. Continue reading

about us without us

Ever wonder what it feels like to consistently hear and see in mainstream media programmes, interventions and whatnot, all about you but without you?

I am mentally exhausted, and still physically shaking from the effects of this programme:

Living With Autism – 9msn

It was very triggering, I could not vocalise my reactions coherently last night, but am going to try now. I could write a conference paper on this alone, or more, but here is a brief.

Big glaring questions:

1. A programme about autism… BUT… Where are the autistic voices? A few seconds here and there, nothing more. Would this be acceptable if it were a programme about, for example, Chinese culture and nobody bothered to properly research or interview Chinese people seriously?

2. Has anyone thought how a more ‘severely autistic’ person would feel, watching this? OK, so I know many so-called ‘high functioning’ autists / Aspies may be quite happy with the programme, and glad for the functioning label that sets them apart superficially from the ‘lows’. But not me. I am not considered ‘severely autistic,’ and there are some sympathetic bits in this programme, but it was in general quite horrible to endure.

3. I wonder what the response would be if Down Syndrome or any other condition were to be examined and presented in this way? Today’s trend is autism. Have we really evolved in our attitudes towards differentness and difficult deviations from the prevalent norm? Continue reading

ode

Here, a brilliant entity in itself, an ode to one artist by another artist, bridging all arbitrary generic divides… and resonant in its warm light… gentle prompting… speaking to the bodied distress emanating from a previous post of mine (insult).

Read the entire poem, I urge you, it is worth the few moments to take…

To the Brave Artist Richard Harrington, by Stephen Rifkin.

My favoured quote…

We forgive them all, those who

Speak to us of their views,

When they are interesting, catch us,

And we stand in wonder

In the dim light, alert as cats,

As quick to offend.

We appreciate your spheres.

Dub them Harringtons, for today.

(Stephen Rifkin, August 21st 2015.)

arabesque

Sometimes, when extremely stressed, my brain goes into ‘word stimming’ mode, and seemingly random words flood my mind in a literal, concrete flow. They wash in, swirl around, bob up and down like flotsam and jetsam, and then seep out eventually. Other times, one single word gets stuck in the echoing space, and performs its own dance – which may be gentle and undulating, or vigorous and dramatic. Continue reading

insult

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When is it ever a “wrong place wrong time” to voice my objection to being insulted?

If I am dealt an insult couched in the form of a compliment just because of my race, nobody in their right mind would tell me to just celebrate the compliment and not point out that I feel insulted – to quote, “wrong place wrong time, just saying.” If someone used derogatory terminology to ‘praise’ a person with Down Syndrome for having achieved a level of ‘normality,’ e.g. “not so retarded,” most people would be up in arms at the use of the derogatory term. Yet, when I protest against an insult to my autistic embodiment, on a forum meant for autistic people no less, I am shot down as a wet blanket because I ought to be celebrating achievement instead of pointing out the ironic fact that the ‘celebratory’ comment contained an insulting term.

The most disheartening aspect of this was not the comment made by that person telling me to basically suck it up, but what caused me some personal pain was that the ignorant comment was supported (FB-liked) by the admin of the autism group, who are people I thought and trusted would know better, having shared so much of my journey in my research and quest for Beingness. Continue reading

edification

What does it feel like to be in an inclusive as well as embracing milieu? Yesterday, Lucy and I spent six hours in the company of people who demonstrated what open hearts and minds mean. My instinctive reading of the group told me they were a mixed bag of neurotypical and neurodiverse from all walks of life. It was a grueling two day workshop for art educators, but to me, on the very simple basic level, we were just earnest humans sharing experiences and insights, inspiring one another to develop professional and personal skills, strategies and perceptions. Artistic practice is truly a cogent agency for empathic edification. Continue reading

sustenance

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A garbled ramble on the theme of sustenance. Staying alive.

I love cooking. I love food. But lately, conjuring sustenance has been a wearying and fraught activity. The washing up itself triggers uncontrollable waves of despair. How does one explain executive dysfunction and sensory breakdown? How can the excruciating agony of separation anxiety from one’s intense passion be unfolded in mere words? The terrible flogging of that silent howling… every minute spent labouring over the laundry, vacuuming, chasing never ending armies of dust bunnies, attacking greasy dishes, wiping kitchen surfaces and then doing it all over again, and again, and again… precious physical energy sucked out from an already precariously limited reservoir… Too little left for the important tasks, the crucial agenda of passion: my work. Continue reading

innocence in dreams

Another nonverbal day. The last few days have been even more of a struggle than usual. Is it even possible, without completely losing the plot? Yes, it seems so. I am still here. Still relatively coherent, very much alive (the pain tells me that, very clearly so), but in a surreal state of high-pitched silently shrieking fugal stretto. At the same time… oh no, there’s that Pina Bausch Le Sacre dance scene again! How do they all coexist? I do not know. They just do. It’s all ‘going on’ in there, a palpable, concretely physical unfolding in the abstract realm of my brain. Yep. Go figure. Continue reading

poco a poco

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The Bung-Up Budget Breakfast

The autistic life is not terrible. Just very challenging. In fact, some days, the struggle is monumental and overpowering. But the wonderment is so glorious and beautiful, the thrill so resonant, I will not exchange it for anything less – even if it is a 5% compared to the 95% of struggle. Continue reading

allegro con brio

A fitful night. Strange dreams. Shivering cold / sizzling heat – sensory imbalances. Terrifying and overwhelming fear-anxiety – how will I ever get this project (Sonata in Z) out of the bog and up and running?  Continue reading