Allison

My sister Allison is dying. She is dying at the age of 40 in an aged care home, because the Queensland Government’s disability system is broken.

I always thought that we lived in a country where, no matter what went wrong – if I lost my health, house or job – there would always be a basic level of support; a net to catch me if I fell. I assumed that the systems we have in place, such as health care and disability services, were amongst the greatest successes of a modern democracy.

I was wrong.

My sister Allison is dying, and there is nothing I can do about it but write this letter.

Allison is disabled. She is 40 years old, and she has lived in an aged care home for the last two years. In that time, her neurologist has reported a deterioration in her condition which has nothing to do with the brain damage she suffered as a child. He says that it is at least in part because of the lack of stimulation in her environment.

I have watched my sister gradually lose the ability to move her hands, lift her head, stand and walk to the bathroom.

We have made noise. Youngcare, the national organisation working to get young people out of nursing homes, has advocated with us to the Queensland department of disability services. Our friends and family have written letters to the Minister. Madonna King wrote an editorial about Allison in the Courier Mail, which received over 200 email responses from people around the state, voicing their support and sharing their own stories of loved ones in situations like Allison’s.

My mother cared for Allison as long as she could. She is a war widow; my father was a veteran of the Vietnam and Malaysia conflicts who died of heart disease related to his service more than ten years ago. My family works in public service – teaching, nursing, caring professions. If we could look after Allison, then we would. But her needs require professional support.

So, naively, ignorantly, we looked to the system, the safety net, the social services which we have faithfully paid our taxes towards, the great success of modern democracy.

The system failed. There were literally no places for Allison in disability care. She went into aged care as they waited for someone to die in a disability home and free up a space.

Three months ago we heard that there might be an opening for Allison in a disability home equipped to care for her. But she is still in her aged care home because there are not enough carers at the centre to look after her.

Whilst we have waited, winter has approached, and Allison has contracted pneumonia twice in two weeks because she is so immobile – and that is because she is left in bed or in her chair, with no stimulation.

It is not the aged care workers’ fault. They do their best. But my sister needs to be in a disability home, where there are activities, stimulation. She needs to be somewhere where the focus is on life, and not the other thing.

I am afraid now that, even if the department does find the funding for the carers to help Allison live in a disability home, it will be too late.

What makes a life worth saving? Some might think that it is time to let her die. I feel certain that this is what the government is waiting for. I really don’t think they have KPIs for keeping young people alive in aged care. In fact, one fewer is one fewer in aged care.

I have thought about this for a long time and here is my answer. Allison is loved. We can see her in her eyes, and when she tries to talk and say “mum.” We read poetry and stories to her, some of which she wrote herself many years ago. She runs her fingers across the pages and we know she is reading the words with us.

What makes a life worth saving? Love. It is more than many able-bodies people could claim – that they are loved and loved well.

Please, Premier Newman. Don’t let my sister live, or die, like this.

Since I wrote this, I have had lovely people ask how they might help. There are a few things I can think of:

  • write to the Minister for Disability Services in Qld, Tracy Davis MP, ccsds@ministerial.qld.gov.au
  • write to the Qld Premier, Campbell Newman, thepremier@premiers.qld.gov.au
  • write to your own local member or state Minister, deploring the fact that there are more than 7,000 young people in aged care homes around Australia
  • consider supporting Youngcare Australia, which is a not-for-profit organisation committed to helping get young people out of aged care homes and into age-appropriate disability care

Thank you :-).

Tips for juggling creativity and work: part two

This week, I bring you Tori’s tips for juggling creativity and work.

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Creative type No. 2

Tori, food writer and communications officer

1.  What’s your creative passion or dream?

To live well and share that fun by writing about it. In my early 20’s I wasn’t very well -there were a few  years when I spent a disproportionate amount of time in bed- I kept the brain ticking by writing a terrible terrible novel. I learned that when things are a bit rocky time spent on the couch with a lap rug, cup of tea, and an internal conversation can be instantly comforting. I’m not quite sure where the cooking thing came from; I grew up in a household where food was about fuel, not fantasy. In my blog I call the husband ‘The Hungry One” and I think he’s had a huge role- the satisfaction of feeding and delighting someone you adore can’t be underestimated.  These days I love nothing more than reading other people’s writing about food, cooking and travel; so I try and add to those conversations by writing about what we do. Even if it the writing goes nowhere, hopefully when I’m old I’ll have an excellent dossier of a life well lived.

2.  How do you support yourself financially?

I spend a lot of time taking capital letters up and down in a communications job for a government agency. In my spare time, I write about food for yourrestaurants.com and am always trying to get some more freelance work going. The husband is endlessly patient with my meagre contributions to the household bottom line.

3.  Are there sacrifices involved in following your creative dream, and what makes it worthwhile?

The ego is a tough one; the suspicion that you’re not advancing as quickly as you perhaps could in the ‘real world’ job because of your creative choices. But at the end of the day, it’s about what makes you happy- and the real world doesn’t always do that.

4.  Do you hope to support yourself through your creative work / do you already?

I’d love to earn a bit more cash from it. One day I’d love nothing more than to have two smiley little kids on the carpet tottering about while I get to write.

5.  What are your top three tips for managing a creative passion?

Make sure that whoever shares your life supports your creative life too.

Don’t be afraid to talk about what you do- I wish when you meet people they wouldn’t instantly ask ‘where do you work’, but instead ask ‘what do you love to do?’

If it stops making you happy; give yourself permission to take a break until you feel the urge to play again.

6.  Where would you like to be in your life in five years time, and what are three things you are doing now to get you there?

See above; sitting on a couch somewhere with one happy little muffin on the floor and maybe another in the oven, writing and earning a little bit of money from it would be perfect.

Being able to properly poach eggs (always my downfall)

Maybe turning the writing into a book (but this one may see the light of day)…

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Thanks Tori!  To visit Tori’s blog and hear some truly excellent foodie tales, go to http://eat-tori.blogspot.com

To see last week’s tips, from playwright and business analyst David, click here.

I have one more set of tips to bring you, from the lovely, art’n’crafty Kate over at http://love-you-big.blogspot.com. I’ll publish that in a couple of weeks – might be a bit busy next week, getting married.

Tips for juggling creativity and work: part 1

Some time ago, I wrote a post called “The Juggling Act.” I got quite a lot of responses from you guys, about how you face the challenge of juggling creativity and a paying job.  So I thought I would interview three creative types and get their insights about how they do the juggle. This week’s creative type is:

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Creative Type No. 1:

David Sharpe, playwright and business analyst for the creative industries

David was a recent finalist in the Short’n’Sweet play competition, and won best emerging playwright award.  He’s currently working on a number of play and film projects.

1.  What’s your creative passion or dream?
To write for theatre and for film/television.

2.  How do you support yourself financially?
I work full time in arts management.

3.  Are there sacrifices involved in following your creative dream, and what makes it worthwhile?

It’s the other way round.  It’s my creative output that suffers from me working full time. So the sacrifice is less time spent writing and learning how to do it better. But I like the security of full time work and the bonus is that I enjoy working in arts management.

What makes this juggling act worthwhile is two things:

  • seeing my work performed and
  • being able to pay the mortgage.
  • 4.  Do you hope to support yourself through your creative work / do you already?
    No.  I hope to be able to continue to work full time and find enough time to pursue my writing.

    5.  What are your top three tips for managing a creative passion?

  • Commit to it.  Set yourself goals. Where you can, quit other things you’re doing and pursue your creative work (I know, I know.  How can I say this when I’m working full time?  But you can cut out the other stuff around you – for instance, I’m currently finishing and unrelated degree early in order to concentrate on my writing).
  • Continually improve your work.  Seek criticism of your work from smart, talented people.  Don’t be precious about it – it’s vital.  You won’t be able to manage a creative passion if your product is no good.
  • Find people who can help.  Make contacts, pursue opportunities, create a network.  In turn, take time to help those people who help you.  If nothing else, you meet some great people!  But it’s practical too – I know that none of my work would have got to stage without the efforts of others, so I keep networking.
  • 6.  Where would you like to be in your life in five years time, and what are three things you are doing now to get you there?

    I’d like to still be pursuing my career in arts management.  I will probably still be working full time – though possibly I might move to working for myself.

    Creatively, I’d like to have a range of plays and scripts ready for production and available to exploit.  I’d like at least some of those plays be in regular demand for production, and to generate a small stream of income.  And I’d like to eventually – maybe in five years, maybe sooner or later – have a full length play produced by a major company and published.  How’s that?

    I’m searching for professional development opportunities.  Making contact with people who can improve my writing.

    I’m looking for opportunities for my work to be performed – in essence, bringing it to the attention of others who can produce it.

    I’ve set some goals for the year – to continue to develop one full-length script and to write the first draft of another.  To have two more short plays produced.  To enter one new competition.  To access two professional development opportunities. To write two short film scripts – one new and one adapted from a previous work.  Some of these are done already!  And some haven’t been started…

    And just for the moment, I’m not writing.  No time.  But soon there will be and until then there’s other stuff I can do.  I’m reading, watching, listening, researching, making notes – so that I’ll be ready to work.

    ***

    A big thank you to David for giving us such honest and useful advice!  Next week, I’ll publish Tori’s tips.  Tori is a food writer by night, a communications officer by day.  You can check out her blog at http://eat-tori.blogspot.com/

    The people have spoken

    Well, at least some of the people…and what they have said:

    1. Change this blog template to make the comments appear more obviously and so it is easier to leave a comment

    2. Keep doing horoscopes, but if you must cut back, then weekly is ok

    3. Keep telling the self-publishing story

    4. When are you going to introduce us to Mr Middleton? 

    5. As for the other stuff you thought you might do, try it and see if we like it.

    OK. So what I’m giong to do is this:

    1. Do what you told me to. 

    2.  That’s pretty much it.

    So, I will look for a new WordPress template, start with a weekly horoscope as of next Monday, try to drag Mr Middleton away from his laboratory for an introduction, and I will do a self-publishing report each week, plus any other random stuff that comes to mind, and see if you like it.

    The people have spoken!   Thanks, the people.

    Blog plans

    Hey there punters. I have done some hard thinking about what I should be doing on this blog, thanks to some emails and comments from you guys, and I think I need to modify what I’m doing.  Frankly, trying to write a horoscope every day is killing my blogging mojo…

    SO I have decided to trial this:

    Mondays: Horoscope for the week ahead 

    Wednesdays: Self-publishing update

    Fridays:  Random nonsense fascinating insights

    What do you guys reckon?  I was thinking also, about maybe doing an occasional feature, maybe once a month, on a different “creative type” because so many people I know have a secret creative life (check out this for a starter…I work with this girl, she is up on level 5 doing important comms stuff, and I am on level 1 doing lowly research work…anyway, I just found out about her secret foodie passion!).  

    And also, I was thinking about an “I heart nerds” column, because I do, and they do the coollest stuff.  

    AND I was thinking pretty soon, it might be time to upload the first chapter of Mr Middleton...

    Your thoughts please!