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

2015 Write-ability Fellowship Applications are open. Time to suck up the self-doubt and apply.

Writing has been a godsend for me over the last nine years of illness. I'm not quite sure what I would have done if I hadn't found my words again. When illness came knocking I fell apart. All the pieces of me were scattered on the floor and I had no idea where to start to put them back together. Now as I sit here typing I realise I have managed to glue most of me back together. Not necessarily in the same way as before I became ill, but that's not a bad thing.

In many ways illness has allowed me to reinvent myself and pursue paths that I had shoved aside in favour of career, family and life. Writing was a natural outlet when I was younger. I used to watch black and white movies on the weekend and write myself into the plots. I'd read a book and write myself into the pages or fantasise alternative plot lines where I'd be slaying orcs or wandering over English moors alongside the main characters. Poetry and short stories were written in blue biro in the back of note books and in secret diaries. It was an important part of my life. 

Over time that writing went by the wayside, to be replaced by writing protocols and lengthy patient reports. Then illness hit and nothing. When 2 years later a social worker suggested that I start writing again I was unsure. But I took the plunge and rediscovered that old love. And those words and the process have had a healing effect. But my confidence still wasn't there.

"Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me." (Writing Myself, 2014)

When the Write-ability Fellowships came up in my timeline I was reluctant to apply. I had been to a few Write-ability workshops and been both inspired and worried that I was in over my head. I saved the application form and closed the tab. I reopened it and closed it more times than I could count, convinced that I had no hope and that my writing was too poor. I wanted to write my memoir, something that was scattered in pieces throughout my computer, but my confidence and organisational skills were a mess. On the last day I had a "Stuff it!" moment and sent in my application with a sample of my work.

When I was selected it didn't seem real. I was shocked. I double checked the email to see if I'd read it right. And there it was I had been selected and was paired with a mentor. Sam Twyford-Moore was incredibly supportive and helped to build my confidence and writing skills. Books and writers I would never have found now fill my bookshelf. Aspects of writing I had never considered were discussed and knowledge generously shared. I was also given the boost I really needed to continue and finally a real "maybe I can do this" moment. 

To have someone in the field help, encourage and guide is a fantastic opportunity. Since that time I have direction. Outlines have been created to tame my scattered mind. And I received the kick up the bum I needed to get excited about writing again. Amazing what you can get out of 6hrs! 

Being part of that program opened up opportunities that I would never have imagined and while I still have a shocking case of Imposter Syndrome I am also content to call myself a writer without cringing (okay so there is still a little cringe of unworthiness, but it's a process and I am working hard to reign it in.)

I have been lucky to be introduced to what is a very welcoming and encouraging Victorian writing scene. I have spoken at the Emerging Writers Festival and had two pieces published by Kill Your Darlings and been part of the Day in the Life series during the Digital Writers Festival. 


Kill Your Darlings: 21
Sucker Punched: Ducking and Weaving Through the Grief of Chronic Illness. 

Kill Your Darlings Blog
It's All Just Preparation for the Zombie Apocalypse.

A month ago I sat in a freezing warehouse in the Melbourne CBD watching writers speak about their weird obsessions. I had just been up there myself, microphone in hand, opening up about my love of zombies. And I realised that life truly is unexpected and sometimes absolutely fantastic.

Now while not everyone dreams of talking about zombies at a writers' festival, you never know what the future may hold. If I had never taken the plunge to apply for a Write-ability Fellowship last year I know it would not have happened.

If you are a Victorian resident who lives with disability and loves to write I encourage you to apply. Poetry, screenwriting, memoir or fiction writing it doesn't matter. If you think you've got what it takes, or even if your confidence is not just in the toilet but flushed and on the way for processing, take a deep breath and apply. You can hyperventilate into a brown paper bag later.

Even if you don't get selected in this round, I encourage you to head along to one of the Write-ability workshops or monthly get togethers and join Writers Victoria (very affordable if you live in country Victoria.) 

Applications close: 5pm Monday 3rd August 2015

4pm, 4th July 2016
4pm, Monday, July 10, 2017

Apply here

Michelle

I thought this an appropriate musical accompaniment. I used to have a very particular view of what of what I wanted and what my life would look like. Then my world fell apart and came back together to give me just want I needed. 

Writing Myself.

(source)

We were on our long drive home from the city after yet another disappointing and disheartening medical appointment. I was contemplating the injustice of the world, the universe, and life in general, and a blog post was already forming in my head. Words and phrases, the panacea to life's ills. If I could order my thoughts on the drive, I knew I could transfer them to my laptop when I finally made it home. I could write a post. Get it all out. And move on. In that moment I knew the need for words. No choice in writing. Just pure need. If people read, great. If they understand, even better. If no one reads or understands, the need is still there. And words will be written, if only for myself.

Each time the words build up and there is no room to breathe. Then slowly they trickle from my mind to my fingers and fall on the keyboard. I watch them appear on the screen in front of me, slowly drawing the venom from the bite of bad news. And then there's room to breathe again. My spirit is lighter and I can face the day. That is writing for me.

I've been ill for eight years now and the last year has been particularly challenging (multiple ED visits and my specialists admitting there's little more they can do for me). And yet I've taken leaps of faith I may not have without that sense of having nothing left to lose.

When I finally had to admit just how ill I was and leave work in 2008, I felt defeated. Work was my life and I didn't know who I was, or where I was going any more. In 2009 a lovely Social Worker I was seeing, suggested I start writing again. I used to write when I was younger, but life had gotten in the way and it had simply slipped aside. Slowly, I started putting words to paper. I showed her, then on her insistence, my family and some other therapists I was seeing. Eventually I started blogging. And in the process I found a renewed love of writing. Therapy in a sense, just in the shape of a keyboard. But I never had the confidence to go further.

Then in 2013 I went to my first Write-ability workshop, offered by Writer's Victoria and Arts Access Victoria, and I began to believe that maybe, just maybe, I could take the next step. Another Write-ability workshop this year on Memoir and my confidence and excitement grew. I took a leap of faith and offered up a piece for a Write-ability Salon at the Emerging Writer's Festival, and suddenly I was in front of a room full of people sharing my words. Then, more recently I took a deep breath and applied for one of the Write-ability Fellowships and was lucky enough to be selected. And suddenly I feel like I can do this.

I wonder if I would still be sitting in my bedroom tapping away at the keyboard and hiding my words in the safe zone of blogging, if not for the Write-ability program? In all likelihood the answer is, yes. Becoming seriously ill and living with a progressive neurological illness challenges your sense of self in ways I cannot fully articulate. For a long time I thought I had nothing to offer the world as who I thought I was, was slowly stripped away piece by piece. And my confidence took a battering in the process. But now there is a real light in my life. I may not have my health but I do have my writing, and a new sense of confidence. Where it will lead I have no idea, but I am ready for the ride. The Write-ability program has been a huge part of that realisation.

So I wanted to take the opportunity to say thank you to both Writer's Victoria and Art Access Victoria, for creating the Write-ability program and for the fantastic team headed by Fiona Tuomy. It provides so many great opportunities for writers with a disability and means a lot to me, as a woman muddling through life with an acquired disability, and I know to many others.


Excited to announce that I was awarded a Write-ability Fellowship recently. Can't wait to start the mentoring process with Sam Twyford-Moore.

Michelle

For those who missed it, this isn't the best quality, but it's my first time publicly reading my words. And the first time since I left work where I've done any public speaking. I've presented research in a room filled with a couple of hundred other researchers, but this moment was one of the most anxiety provoking I have ever experienced. Plus, I had only been discharged from ED two days beforehand, so not in the best state. Go the power of good pain drugs! And supportive family and friends who convinced me I could do it.