Tuesday, 8 December 2015

International Day of People with Disability 2015: Write-ability Salon, Writers Victoria.

The awesome crew of writers. Top left Sarah Widdup, Paul Dalla Rosa and Write-ability mentor extraordinaire Fiona Tuomy. Bottom left Claire, me, Jax Jacki Brown. (Ashlee Bye not pictured). 

On Wednesday night a group of fabulous disabled writers took over the Writers Victoria Salon. The theme, "Nothing about us, without us." We raised our voices and shared our stories. I was proud to be amongst such a great crowd. The Write-ability Program, supports disabled writers at all levels to develop their writing and it is a group I've been very grateful to be a part of for a few years now.

Disabled writers have diverse stories to tell. And no one is more qualified to tell these stories than we are. We can raise our voices and tell the truth of our experience.

Hear Us.

This is a video of my reading for the Write-ability Salon, to celebrate International Day of People with Disability 2015. A transcript can be found below. 


My neighbour's growling four-wheel drive reverses past our headboard. Thin walls and a driveway less than a metre from our bedroom negating any need for an alarm clock. Pavlovian instinct kicks in triggering my first curse of the morning. An unsteady hand extends from the covers. Sausage fingers stabbing at the screen turning off flight mode. If I squint and close one eye I can mostly deal with the little flashing light. The phone vibrates and messages by the dozen begin to arrive. It's too early. Pre-caffeinated me can't process that level of interaction. I swipe aimlessly through time lines. Past cat videos, music videos, heavier news stories. And then a meme catches my eye.

Without your health, you have nothing.

My sleep addled brain can't quite process the message. I shake my head and scroll back to the picture. A woman stands triumphant, well-toned arms raised above her blonde head in a sun-kissed wilderness, white Georgia font in bold. I read it again.

Without your health, you have nothing.

It leaps from the screen and stops me still.

Without your health, you have nothing.

I look at it again and feel my body tense. My broken and breaking, health-free body. Even in my mouth-breathing, drooling state I can conjure up some choice expletives.

I look at the increasing number of likes and shares. The “Ra Ra motivational” speal written above the picture grates.

Without your health you have nothing.

Taken as truth and perpetuated in shares. The message spreads like an infection through the ether as followers find motivation and inspiration in the simplistic words. The underlying judgement begins to fester amongst the followers as comments multiply about those who are somehow the cause of their malady or disability, and how they couldn't bear a life like that.

I read it again. And feel my anger rise.

If accepted as truth, I have always had nothing. My “constituation of a wet tissue” as my father was want to say, belying even the pretence of health in any portion of my life.

And now?

Now I am living with illness and disability 24/7. Year after year. With full knowledge that it will never resolve. Health is not to be mine, not now. Not before. And not in the future.

Is my life to this point a collection of nothingness?

As I continue to be ill and my disability increase, is nothingness all I have to look forward to?

Without your health you have nothing.

The meme on the screen before me states as fact that which is a lie.

A lie perpetuated in a society that seeks perfection at every level. Whatever that is? Perfection. An arbitrary guideline created by those who would other. Those who have products and ideologies to sell.

Such sentiments reek of health privilege. They reek of false lessons, false security and small ideas. "I have my health," is the new statement of prestige and success. Up there with a new BMW, or a mansion in Toorak.

The ill and disabled become inspirational for simply breathing, because others cannot understand how we continue on in a such a state of constant nothingness.

Advertising campaigns contrast the bright lights of health with the grey world of illness. They see joy vs despair. Friend vs Enemy. The Good vs Bad. A moral argument that is transposed upon those whom illness calls. And so we are told, "without your health, you have nothing."

Avoidance of illness at all costs. If you become ill and disabled you have not tired hard enough to avoid the nothingness. You must be judged. You should judge yourself. Bludger. Lazy. Worthless.

My broken body is held up as both warning and object of scorn. I am the reminder they work hard to forget.

But no amount of simplistic memes and soft lit backgrounds can erase the truth.

Illness doesn't care. It doesn't care if you run 10km everyday. It doesn't care if you only eat organic. Or have never smoked or consumed alcohol. It doesn't care if you help old ladies across the street or kick kittens for fun. Good, bad or indifferent. Illness happens. Disability happens. Life happens. Genes can kick in, or accidents can occur.

Yet we have so demonised the idea of illness and disability that we fear and judge those who live with them. We see the end of the world. The “I could never live like that”. And in turn the “if only you'd done this, that, or the other.”

Is it then truly surprising that people fall apart when illness and disability come their way? No wonder they struggle. We are so ill prepared for the concept of a fallible body, that we are suddenly thrust into a world of nothingness. Of no hope. Of fear. Of helplessness and hopelessness. We have no skills, no training. Illness is so alien, so other, that we cannot conceive a way through it or a way to live with it. We have failed ourselves in our self-indulgent belief that we have control over the fickleness of life. In turn we have created our own failure. Where in truth none exist. Sometimes shit happens. But, more importantly, we continue on, often fantastically on, when it does.

1 in 5 people live with disability. I in 2 live with a chronic illness. Are we to believe that all these people are living lives of nothingness? That lives of worth, are the province of the able-bodied alone?

Such a belief does a disservice to us all.

This notion of morality and value is something we have created and in turn something we can change. If we have the courage to move beyond purile slogans and embrace the infinite beautiful variety that is life.

I don't live in nothingness.

And I don't live despite my illness. I simply live. No caveats needed. I live a life of possibilities and joy. A vibrant, fulfilling and worthy life.

I don't have my health. I have never, and will never, have my health.

And despite what a lie-filled, and promptly deleted, meme would suggest,

I have always had my everything.

A couple of the other pieces from the night are avaliable online. Check them out.

Claire Barnier's piece can be found here

Sarah Widdup's piece can be found here

1 comment:

  1. Such a good article - I often trawl pinterest for spoonie hope - having words of encouragement and wisdom can really make a difference on the low days when coping with chronic illness is just so hard. But so many of the memes out there are stupid, facile, or just plain wrong!
    Well done for pointing this out!


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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