You’ll put yourself in an early grave bothering with trolls… Read the rest of this entry »

In the first pages of Nobody Nowhere I wrote about an aunty ‘Linda’. This week, this aunty died. I visited her twice in palliative care and got to thank her. She had known me from birth. When I was 6 weeks old I was taken to her with all my belongings and she was told ‘take her’. She had told me at least half a dozen times that she wanted to adopt me but ultimately couldn’t because she and her husband feared they’d become attached and I’d be taken back when I was older. Along with my father and grandmother, she was pivotal in my survival Read the rest of this entry »

If you tune in to it, you amplify it… that’s the basic principal… so tune in to your own heartbeat, the sound of your own breathing, the annoyance of a particular sensory stimulus, and guess what… you amplify it. Read the rest of this entry »

The definition of a degenerative disorder is when there is an active process contributing to measurable decline in functioning, be that of the spine, of the brain, of the myelin that protects the nerves. Ehlers Danlos Syndrome is not an autoimmune disorder (though one could certainly have both). In this sense though autonomic neuropathy, in fact polyneuropathy, may occur in both MS and EDS, in EDS there is no autoimmune disorder at work attacking the myelin, even though there may be degeneration of the connective tissue that protects the myelin which in turn protects the nerves. Expose the myelin through the degeneration of the connective tissue that protects it and you leave the myelin vulnerable to whatever damaging processes the body has to offer. Read the rest of this entry »

Connective tissue in the brain is essential to learning and how we store information. What then of those with connective tissue disorders such as Ehlers-Danlos Syndrome? Whilst EDS is presently thought to effect 1 in 5000 people in the general population (though other rarer forms like EDSIV 1 in 20,000) would we be more likely then to find EDS related connective tissue disorders in those with learning and developmental disabilities? Read the rest of this entry »

Why I’m voting for the greens

Scientists have found genetic markers in a network of genes that allow them to identify up to 85% of one year olds who are predisposed to developing autism. These are GENES, so we’re talking about what these kids were born with. Read the rest of this entry »

Something vaguely resembling Ruth emerged in the doorway as if from nowhere and held out a five dollar note. Her face looked like one of those patchy dogs with shades of grey and brown where the punches had hit. ‘Go down to Mings and get me a packet of Kool, you hear me. Here, take this, now bring me my fags, Kool, a packet of Kool. What’d I say?’. ‘Kool’, I said to myself, fresh is the flavor of Alpine, this is Marlborough Country, Benson and Hedges, when only the best will do, and isn’t that all the time. Read the rest of this entry »

The mashed potato of the school day was over with again as the sensations of the day crashed down on me step by step along the path all the way home. Didn’t need a brain because my feet knew where they were going. Passed by the big expanse of beige. The older kids, big vinyl bags slung over shoulders, interactive sounds of challenge and bravado as they poured out of the technical college a few doors down from my junior school and spewed out into the street, onto my footpath.
I kept walking, shoes off, straps of my sandals in hand, the heat of the path causing a burning sensation as sun kissed the soles of my feet via the footpath. I stepped a while on the sun dried scratchy beige that was meant to be grass but was well over due for a drink and I busted for a Sunny Boy, cold frozen orange ice popping from the top of one of those pyramid shaped packages and turning my mouth orange, not to mention what it probably did to my brain. But I didn’t have one.
Across the tarmac, black sticky goob tar latching onto my eight year old feet like fly paper. My feet quickened across the surface, hopping up onto the semi-grass nature strip, shoes still swinging on fingers, prickly bindis spiking my feet from the dead old grass, sun crisping me, beckoning yet more freckles and turning my white body a progressively raw shade of pink. I squinted, still catching roses in my nostrils, trim lines of flower beds in front gardens numbers sixty-three, forty-seven, seventeen.
At the corner a tram rumbled by on a rattling straight line to mysterious places unknown out there in the disappearing distance of the hazy city center with its towering buildings. Around the corner, press the button, and press, and press and and and and presssssssssss. The lights spoke back changing from green to red and I crossed in between the movement of cars, standing in the spaces, navigating my maze, car horns filling the space between my ears. Past the motorcycle shop with its glossy lickable metalica and painted handwriting that glided like a dream over rounded surfaces hugging shiny silver metal.
Ming Wah, Cafe Milk Bar. I could read words and make the sounds to them and this one felt good in my mouth and rang softly in my ears with poetry. Ming Wah, Cafe Milk Bar. It had timing and rhythm and rhyme. And it smelled strange. And it was dim and beckoning with its checkerboard floor and red tassel things hanging from the ceiling, little pictures all around and gold plastic with scrolled shapes curling. Ming Wah, Cafe Milk Bar. It had allure.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

The clock in the hall struck five o’clock on a summer afternoon 1972, a Friday. My skinny pale legs ran around the billiard table chanting ‘oh my hairy Godfather’ from the Jackson Five cartoon from last week, poking out and putting back the net pockets at the corners, at the sides, in turn as I
passed. It would make the world tick and all would be well. Read the rest of this entry »