Blood on Tony Abbott’s hands

Maybe not yet. But calling the tragic events of Sydney yesterday “politically-motivated violence” is like asking people to start racial riots.

This was an act of a crazy guy. A nut job. A sociopath with a criminal history.

Calling this politically-motivated violence is like calling the Cronulla riots an act of patriotism.

Criminals, not terrorists.

But our prime minister’s words will light the keg. There will be racial riots again in this town. MORE PEOPLE WILL BE HURT and it will be our prime minister’s fault.

My question is: where did he get the gun? There seem to have been a lot more guns around in violent crimes in the last two or three years. Could the prime minister perhaps do and say something useful about that, rather than torching the tinder and watching us burn?

 

 

Discrimination

Something pernicious is afoot. It’s not a conspiracy; except that it is.

As many of you will know, I research for a living. I spend many of my waking hours talking to people and then thinking about what they said, what it tells me about their views of themselves and the world, and what that might mean for my clients.

In my early “career,” I worked as a policy adviser in the Office of the Status of Women (another Whitlam legacy, already dismantled). So the term “structural discrimination” is not unknown to me.

So why has it taken me months, possibly years, to remember those two words and apply them to some of the equity issues I see arising in the social research I do?

Naturally my ageing brain should take most of the blame: those two words have probably been thoroughly buried under mounds of appointments I have missed and kindy costume days I have failed to remember (luckily, my daughter dresses as if every day is a dress up day).

But you know, for fun, I like to read about the history of neoliberalism (I don’t get out a great deal). I enjoy big words. I like abstractions. Give me a pithy phrase to explain why it is so hard for minorities or women to take advantage of opportunities, and I will use it ten times in the next ten minutes.

So why did it take me so long to remember that unintentional barriers to government services, employment, and justice are not just oversights by well-meaning people; they are actual, real instances of “structural discrimination”?

Here is my theory.

I could not remember those two words, “structural discrimination,” because we don’t talk about discrimination at all any more. On the rare occasion that one of the Human Rights Commissioners is on the evening news, just seeing the word “Discrimination” in their job title makes me sub-consciously cringe.

Implying that one social group could dominate another, is to contradict the fundamental rhetoric of neoliberalism: that everyone can make it on their own merits, and if they don’t it is their own fault. Structural discrimination does not happen; people simply fail to sort themselves out.

The word discrimination, like feminism, has fallen out of common usage as the neoliberal agenda has gained ground. (An interesting aside about neoliberalism: despite the rhetoric that greater labour market flexibility will lead to greater prosperity, in no single country has this been found to be true for the common man or woman. By contrast, corporate wealth has most definitely increased. See? I did read the first few chapters of Piketty).

People don’t want to feel like victims, which is fair enough. But it denies a simple truth: sometimes, we are.

Of course, you can turn yourself from a victim into a fighter pretty bloody fast. But that does not change the fact that bad shit happens to good people. Sometimes it is unavoidable: a car crash, a cyclone. When it is the result of discrimination, it is totally avoidable: a government service offered only in English; a continuously renewed contract which runs out just before you (publicly) announce you are pregnant.

But you can’t avoid it if you don’t name it.

“It” is discrimination. “It” is accepting that you cannot always win on your own merits. Sometimes the cards are stacked against you, and you need someone to change the deck.

It helps to name things for what they are. That way organisations, politicians, and well-meaning people who may simply not have thought about it before, are confronted with the consequences of their in/actions.

So come on, friends. Let’s do some naming.

1. The Gang of Breastfeeding Nazis Calling Themselves Community Health Workers

I find it interesting that the last 15 years have seen the decision not to breastfeed equated practically with child abuse. There are some (actually fairly minor) health benefits proven to be associated with breastfeeding (See “Is Breast Best?” for a great summary). But what about the economic, psychological and societal benefits of having women back in the workforce if that is where they want/need to be? Something is going on here. When government-supported services for new mothers push you towards a choice, on slim evidence that it is actually worth stopping your career for, then I think you have to question what is happening. I blame no one. I have not done the research. But I question it. I certainly question it.

2. Career Opportunities Which Require You to be Single and Childless

Never overtly, and often not even intentionally. But if an opportunity has no flexibility about working near or from home, when the work would lend itself to it; if an opportunity means you lose your childcare, or you cannot do the childcare pick up or take care of your ageing relatives for extended periods because you have to be away; then the providers of the opportunity may be structurally discriminating against you. Even if they don’t mean to do it. Even if they would be horrified to hear those words applied to them.

3. A Tertiary Education System With Uncapped Fees

Since Whitlam’s passing, we have all been keenly mourning Australian society as we knew it. Good-bye, meritocracy; hello uncapped fees. This will structurally discriminate against poor people and retain power in the hands of a few.

4. A Petrol Excise That Disproportionately Discriminates Against Poor People

That was a classic, wasn’t it? Joe Hockey trying to explain that rich people would be more affected by a petrol tax, because they had more cars; as if he had never heard the concept of proportion. The Treasurer of the country.

5. Negative Gearing

Housing prices and rental prices will always be too high for many because of a tax system structured to discriminate in favour of the middle class and against those trying to get in.

I could go on. But over to you. Name it.

The role of art in a post-religious world

The first time I tried, and failed, to remove myself from God, I was 10 years old. I lay on the carpet, playing with the dust motes in a shaft of light which came in through a sneaky gap I had made between the heavy, dark pink drapes my mother kept closed all year around. i wondered if they were atoms; if I was seeing the smallest building blocks of matter. I dared myself. There is no God. You don’t believe in God! The world tipped sideways (I rolled on to my back and pushed myself up). It was the scariest thing I had ever thought, and I had not left the living room.

My next crisis of faith was when a documentary came out about the Dead Sea Scrolls. I was 11, just shy of my Confirmation, which is a Catholic event where you, as an adult, confirm the faith that was first confirmed on your behalf when you were a baby, your godparents speaking for you.

At your Confirmation, the bishop asks you, “Do you reject Satan?” And you say, “I do.” They really ask you that, in front of the parish. You stand up in your white dress with a red sash across your chest, representing the Holy Spirit, and you say that you reject Satan and turn faithfully to the gospel. You will have no gods but God. You believe in Jesus Christ our saviour. “I do.” “I do.” “I do.”

On the day of my Confirmation, I first encountered the dilemma of hedging your bets. I wasn’t sure about God, ever since that documentary (it had been on Channel Seven, which should have been enough to discredit it, as we only watched the Channel Nine News). My parents sent me to bed before I could see it, but I had seen the ads, I had heard the introductory statements. “Was the face of Christ really imprinted on the Shroud of Turin? (Yes, that is a real thing, not something from a Tolkien novel. Where do you think fantasy authors get their ideas?) “Jesus spoke Aramaic.” “These Scrolls reveal the shocking truth, buried for hundreds of years, about the man we know as Jesus.”

None of this should be especially confronting. Yes, Jesus was a Jew, and he spoke the local dialect. But – hidden scrolls! A secret language! What did they reveal?

I knew what they revealed. Jesus was not God. Jesus was just a man. I went to bed, scared.

On my Confirmation, I could feel the lie on my tongue, a physical presence. If there is no God, I reasoned with myself, then I am not going to go to hell for this. I did not want to disappoint my family (Allison), and I did not want to be embarrassed by refusing the bishop’s blessing. Things were a bit muddled – I saw myself, just like a Christian hero, refusing to proclaim my faith, prepared to be ashamed publicly for it. i wasn’t an idiot. I knew I had it the wrong way around – you can’t be a Christian hero if you don’t believe in Christ.

But this is what it is like, when you become post-religious. You still have all the trappings; the inner quest, the need, the longing for closeness to the divine love, the love which encompasses and frees.

Frankly, I had never felt that love. I was 12 years old. I had no idea what love like that would feel like. I tried to imagine it, there on my knees, eyes shut tight. I felt it as a warmth, a smile in my direction from a consciousness as all-enveloping as night time.

I lay in bed in the room I shared with Allison. I thought about eternity. It made no sense, unless it was actually about right here, right now in this very moment, that eternity was possible. And eternity would be like ecstatic fusion with Jesus. It could happen at any moment, that was the main thing. And hell? If God is love, I surmised, then hell would be spending eternity – a forever, timeless moment – feeling how you had isolated yourself from love.

You can work things out for yourself, even when you are 12 years old. I am pretty sure I figured out the meaning of life one night, as I lay in half sleep. But I was too comfortable to write it down and by morning, it was gone.

Later, in my teens, I returned to God with a vengeance which I wreaked upon myself as punishment for all of that disbelief. While other ninth graders wrote Led Zeppelin and Metallica in heavy black Nikko on their canvas backpacks, I wrote “Life is God” on the outside flap, where everyone could see it, and “Individuality” on the inside, so long I had to squish the “ity” together at the very end. I was a missionary, just like the boys smuggling bibles into communist China: Springwood High was my China.

One day, as I waited outside the library with my friends, three twelfth grade boys found my bag and saw the slogan. They pulled it down and kicked it around on the ground, laughing. I looked straight ahead. My friends, nervously grinning, looked at me. After the boys left, we did not talk about it. Even now, when I do not believe in God, when I have developed a certain fondness for my young, evangelical self, I have never forgiven myself this sin.

Art in a post-religious world. Art in my post-religious world. Art is all I have left. It is the last remaining passage into mystery; the only breath left uncounted. When I hear a piece of music which touches me, I go beyond my emotions and my personal pathos, and I head out into the love that god was meant to be; that all-encompassing pain of knowing you are everyone’s mother, that every single bogan and arsehole in the world is just like you.

As I have said before on this blog, the art I am most familiar with is creative writing. When I read a book that I feel grateful for, it is because the writer has connected me through themselves to the world, but without creating a physical presence in my life, a presence which would demand and require. Instead, the writer lets me be. It is always a surprise, which adds to the gratitude. If you expected it, you would be disappointed.

When else do we get a sense of connection so deep that it transcends our individual selves? Churches are peaceful places. But they only create a sense of un-belonging for me now; a quaint reminder of something I will never have again. In short, they hurt to be inside.

Art (not all art, but some art, the stuff which you recognise as a gift) on the other hand, is not there for me, it is there for everyone. It is where the individual and the group meet, the ultimate fusion of the human condition.

I think that God is the result of society’s need for cohesion in the face of bigger enemies. She has an actual place in our brains, which scientists sweetly call the God-spot, an evolutionary result of needing to balance the survival of the group with the survival of the self. Humans’ two greatest assets, the key to our dominance – our reasonably well-timed selfishness and selflessness. The group and the individual, always in tension with each other.

Now, as religions fade and politics is a sham of self-interested groups, as public spaces become advertising arenas, art unbounded is so very, very necessary. The things we need to pull the pendulum back to the group: community gardens, where we can play out our natural animosity and find our collaborative pecking order. Libraries, where we can feel glad we pay our taxes. Parks, where we can sit with strangers and not feel the need to kill each other. And the excess; the unnecessary; the stuff that makes us laugh and delight. Art. Places where we are safe from the self (our own or other people’s) are shrinking. We need to breathe air into our souls that we didn’t pay for. We need the gift of art to be preserved.

 

 

 

 

 

 

 

Sleeping alone

I sleep alone. I am beautifully, deeply, very married to a man who doesn’t take it personally. I tell people that it is because he is a snorer and I am a light sleeper, both of which is true. But as we all know, there can be more than one truth which relates to an event, either causally or by correlation.

(I never lie. I prefer to call it “summarising.”)

There was one time I remember when I slept with another person. It was 20 years ago and it lasted more than one hour, less than three. It was so completely unexpected – that is not the sort of thing I do. I was the person who could not casually allow a girl or boy friend to crash on the other side of my double bed when I was at uni and everyone sought to be as casual as possible about everything, even big things. (I lacked perspective). I would let them in to my bed, determined to be relaxed, then lie, stiff, alert; for what? A move towards intimacy if it was a boy friend; a call on my duties as hostess if it was a girl.

I don’t remember falling asleep, of course. I remember waking up. I looked up at the ceiling of Frankfurt airport. My friend sat peacefully, my head on her lap, looking around, not in any particular hurry. Multiple miracles: that she was still here, when I had tearfully farewelled her only hours ago, she for the US, me for Australia, our year of desperation (student exchange) over. The things I felt: total and deep peace. I was so completely and surprisingly safe. Wonder: I was completely and surprisingly safe, asleep in the most vulnerable position I could imagine – asleep, in a public place, at the end of happiness, at the beginning of 48 hours flying “home.”

I thought I would curse myself for wasting my last hours with my friend asleep. But I have never regretted it. This miracle. This gift. So many things have faded, but this has not. The sheer, pure wonder and the feeling of waking up, unharmed against all expectation.

I wonder at people who can sleep next to the person they love, every night. I wonder if they wake feeling such deep nourishment every day. I wonder about what I am missing.

I think I should perhaps try again. But I tell myself, and it is true, causally, correlatively, there is never a good time in our busy lives to conduct an experiment which involves losing nights of sleep.

My husband now has a snoring machine, and I have tailor made ear plugs from a cheery audiologist who wished me good luck. Last time we travelled, I slept in the same room and it was ok. It was OK. There was an alertness, but still.

I try not to think about this in terms of progress. And I try not to think about what buried bones make me so alert in my sleep. Maybe nothing. Maybe something. I try not to think.

It was so unexpected: waking, seeing the ceiling, then realising what I had just done. Wonder at myself. Love for her. I only saw her once again in my life. I googled her, but there is no trace. I do not think I will ever see her again.

It was the result of a strange combination of utter exhaustion and bonus time. A gift. Extra, spent in a miracle. Sleep like that is pure luxury: in broad daylight, in public, with someone you may never see again and love desperately because of it. There is nothing of need or functionality about it. It is pure excess, which is why it stays with me, year after year, as close as I have to an experience of mystery, of total surrender, of encompassing peace. Of god.

 

 

 

 

 

 

The Gift

Gift.

I keep hearing the words of gift. Gratitude; generosity, giving, receiving. Love.

There is another layer to the language of the gift. Reciprocity, exchange. Hospitality. Hosting. Obligation and the eternal return.

I think, perhaps, that people know about the rules of the exchange instinctively. In the business world, even men (even men!) understand the implicit rules of the helping hand. You have to be careful what gifts you accept. And how you decline. Best to not be in the line of receiving some gifts at all.

But what about the rules of the gift, sans exchange? The gift, where no one is obliged? Does this exist?

Here is my hypothesis. Yes, they kind of exist. (I wonder if I can say this in my dissertation?)

By which I mean: you can never have a gift without a return. It’s not how we work as humans. See, gifts operate at a primal level, at the basis of evolutionary snake-brain society. Society itself only exists because of the rules of exchange, give-and-take. We all know that when these rules break down – when you cannot trust someone to let you in on the road merge – the skies darken a bit. You start thinking of those other words, the opposite of gift words – social exclusion; isolation; a merciless society.

But humans like the idea of transcendence. We like the feeling of, momentarily, finally, flying.

Enter the gift of art. Art is a gift which is made to yourself at the same time as it is made to others. Art is a “giving-and-receiving,” in the words of sociologists Andrew Metcalfe and Ann Game.

When you make a work of art, you do not demand a direct return. You make your offering and you put it out in the world. You might make money from your art, but this is relevant only to your survival, not to the nature of the work.

I am speaking here about the art which with I am most familiar – creative writing. When you write creatively, you give yourself a gift. Time, permission, space for the unexpected. Something else too. Some sort of essence, a connection with the feel and flow of time and timelessness. And some sort of dispersal of essence; a letting go of the necessary; an unbounded feeling; a recklessness which allows you to fly freely.

The marketplace is there. You pay for books.

But there is the thing which you do not pay for, because it is a human to human thing on the level of the spiritual. It is outside the mechanics of a money transaction, the myth of an objective, measurable reality which can be superimposed onto the sticky, fluctuating relationships between people.

I am talking about the essence of the thing, the thing that you feel grateful for because you did not pay for it. The thing that transcends and surprises you into feeling something you did not expect. The thing which Lewis Hyde, in his book on the gift, describes as that which “revives and refreshes.” Which “has nothing to do with the ticket price.”

When you publish your writing, you can only put out your humble offering and look away. When you read, and you have the experience of seeing something, knowing something, of being powerfully and present to something which you did not expect, then you can only say thank you. Your gratitude overflows, because you cannot repay this gift. And you are not required to repay this gift directly. There is no meanness to it. You have to give it on, by which I mean, now, share it – with yourself, giving yourself the respite to read and perhaps dabble in something of your own, your own gift creation. With others, by offering them this book, or perhaps some other subtler moment of recognition, a smile in the direction of community, palpable or otherwise.

To make a leap (because I can hear my daughter waking up), this is why art and books are crucial to society. This is why we cannot over do the transactional experience of the arts. There must always be preserved the gift. In how we support art creation, distribution and experience. This is why the work of Luke Jarman is so beautifully received. A “gift from the gods,” one member of the public called it in Melbourne when they saw his street pianos appear over night. This is what it feels like to be seen and thanked for seeing.

Art as gift has never been so important before. As religion and other oases from consumption shrink, the importance of spaces where we can simply relate as people has never become so necessary. Libraries, galleries, public festivals; books.

 

 

 

 

 

The black dog

I have always wanted a pet. Ever since my sister brought home Fitzy, the yappy little mongrel, I thought, yes. Finally, we are going to be normal.

But Fitzy was only ever on loan. We were looking after him while my sister arranged to buy a dog which would be an investment. It was called a Shitsu, and she got two of them. I blame the boyfriend.

I remember my dad, throwing Fitzy a tennis ball, and Allison standing back while I circled around the bouncing little bleeder, saying, Here Fitzy! Here! because that is what you say to dogs. Dad was smiling. Mum was inside the house. Things like that don’t last forever.

My depression is not a black dog. Winston Churchill used to call his that. Mine is more of a shadow, an unpleasant odour, something that clogs the pores and the nostrils.

My depression is like this: a weight on my chest, which would move, damn it, if only I had the energy to get up.

It is a vapour, that circles my body and my mind; the hint that life is bleak, that there is no point, that it would be better to just, lie down.

The reason for these gas and fluid analogies: my depression has never been a solid thing, no panting, doleful mutt. It has always been like this: a Geist, a trickster, uncannily able to get into every crack and crevice without saying a goddamn word or opening a goddamn door.

My depression makes me tired.

Here are the things that lift the cloud. I have friends who love me. I have a husband and a daughter who keep me in this world, tethered, so I can’t sink. I have intelligence, and work, and I can exercise and release the good chemicals.

I don’t want to overstate it. But I don’t want to understate it, either.

We can’t have a dog because of allergies. I don’t think it would solve the problem entirely, anyway.

But when I turn my eyes directly on him, my shadowman, he flickers, a wisp shimmering in the headlights. I name him, Ged-like, and he flees for the corners of my ceiling. There he hovers, and lurks, while I get on with living. I can do this, and he says nothing. I can do reality. Watch me burn.

 

 

 

 

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 :-).

To dye or not to dye

My hair is going white. It is skipping grey and going straight to wise old grandmother, and part of me is quite OK with this.

Most of me however, is not.

I want to be a bastion of feminism. But as my friend Jules put it, at some point when a woman stops dying her hair, she just looks un-groomed. It is sad but it is true – in a job where meetings are required and first impressions are part of the deal, grey roots make you look unprofessional.

Will not dyeing my hair help to change this preconception? Can I make a difference?

I am thinking of Susan Sontagging my hair – getting some white foils to let the greying process happen a little more gracefully.

But that is just stupid. it is more work than dyeing it all black.

And there is this: I saw my hair yesterday in the bright, radiant light of a Sydney day – you know, the kind of day where even black objects seem to reflect and increase the sun. My mirror at home is lit tastefully and forgivingly. This was not.

I saw my hair – dry, straggly, and with white bits popping out in unbecoming wires. This on a day where I was off to a meeting and so had ‘done’ my hair. I saw my face too – something else I try to spend not much time reviewing – and saw the telltale lack of elasticity that signals ageing. For someone who has always been young by default of being short and the youngest in the family, I was not prepared for this. I knew I was older – I welcomed it and I feared it, not because being old is scary but being mortal is. But I had not really seen it.

Vanity of vanities: I care about looking better.

But there is the other thing – I want to know I am getting old. I want to see the hair go grey and the skin thin and see that yes, I am getting closer to my estimated time of departure. I don’t want it to be a shock. I don’t want death to be a shock.

I will get my hair cut this week, but as for dyeing – well, I think I will wait a bit longer. Maybe my hair will cooperate and grow its own white slices. If not, well, with the passage of time I may just not care so much anyway. My confidence in my abilities and my person may start to outweigh my fear of making people think of me as a greying relic of the hippy days, back when green was the new black.

I think I will give my head an olive branch: a conditioning treatment to soften the dryness. White hairs, you have won a temporary respite; but springing from my head like crackling pieces of albino hay? Those days are numbered.

A birthday present for Allison

As many of you probably already know, I have a disabled sister. She is my closest sister in age and heart.

To put it simply, she has been left to rot in a Qld aged care home by the Qld Disability Department. She turns all of 39 next week.

Do you know what would be a most excellent birthday present? If we could all lobby the Qld government to get her into disability accommodation NOW.

Madonna King will be telling Allison’s story in her column in tomorrow (Saturday)’s Courier Mail.

Let’s try and get as many people as possible to:

In your emails, please urge the Qld government to:

– give Allison proper disability accommodation NOW
– get young people OUT of aged care homes

Thanks everyone!

BELOW is the letter I sent to Madonna which she will be using in her column. Please feel free to reproduce.

Hi Madonna

I am getting in touch on behalf of my mother, Mary Bailey, who lives in Shailer Park, about the Qld government’s terrible neglect of my disabled sister, Allison.

I urge you to please use your journalistic skills to bring our politicians to account for their false promises of care for young people. The government has a commitment that young people will not be left in aged care homes – yet here is my sister, left to slowly fade away when she could be having quality of life in a disabled person’s home.

I will tell you a little about my sister Allison. She is 38 years old. She likes playing Scrabble and is known as the “UNO Queen” in our family. She is deeply religious, and has long inspired all who meet her with her fortitude and grace.

More than anything, she likes to care for others. She worries that our mother, now 77 years of age, doesn’t take her blood pressure tablets. She frets and tells me to stay warm if I have a cold. She loves her nieces and nephews, and kisses the photos of the babies she has pinned to the wall by her bed.

Last year, my mother finally accepted reality: she could no longer care for Allison. My mother, a War Widow, is too old and frail, and my sister’s needs grew too much for her.

For many years, we had applied to the Queensland government for an adult lifestyle package to help Allison stay socially connected, and contribute to the community as she so dearly loves to do, having spent many years volunteering in childcare and hospitals.

We were always refused.

Last year, when things got too much, Allison was placed in temporary care to wait for a place with Disability Services. In the first week, she suffered a major setback. She lost the ability to swallow and speak.

And so the Queensland government’s systemic neglect began. The government has forgotten her, conveniently shifting her care burden to the Commonwealth, first in St Vincents and now in Yurana aged care facility.

Whilst there, her condition, rather than improving, has slowly deteriorated. Before going into care, she could still walk to the bathroom and around the house. Now she can barely keep herself upright in a wheelchair, so long has she been left in bed by the “carers”.

An aged care home is perfectly good if you are old and about to die. Allison is neither of these things.
She is left in her room, or in front of the TV, with demented residents. There is no stimulation for her; no social interaction, no musical play, no activities for a young person like Allison.

This is simply wrong. We have made formal complaints and contacted the Department and Minister, to no avail.

Allison belongs in a disability support model, one which treats her as the young person she is, with quality of life to be cultivated rather than quietly forgotten.

Even so, Allison still smiles. She can still say, “Mum,” and tries to communicate with her hands and face. She plays UNO and Scrabble, and does her puzzles. She listens to music. When alone, for the many hour of the day and night that my mother or one of us cannot be there, she prays.

Allison is disabled, but there are people who love her and people she loves. She belongs in the disability system, with support for her to live as good a life as she can.

Thank you for reading. I dearly hope you can bring the situation of thousands of disabled young people like Allison, left in aged care homes, to the attention of the public and the government.

Yours sincerely,

Jackie Bailey

The Moopet Files

It has been so long since I last wrote blog posts, that I want to get some Moopetisms down before I forget them.

She is now 17 months old and oh, so cute! She can stand up now, and looks at us with a wide grin, seeking our applause, which we readily oblige with. Walking is going to start soon – we don’t know when, but the elements are there.

She is very affectionate. She kisses babies, other children, people’s knees. She wants to pat them and it is my job to stop her from going for the eyes but still encourage her lovingness.

She has lots of words and understands more. I give her relatively complicated instructions (yesterday afternoon: play with shapes? Go get shapes and the ball and we can play with them. And off she goes. Or she says “draw?” pointing to the high shelf where the crayons live. And I say: if you draw on the floor mummy will take the crayons away. And so on. Obviously a child genius ;-)

She sings. She sings especially on her way to sleep, but also at any other opportunity – if I start singing, or if there is a song on the stereo. She still mimics sounds as she has since we counted her age in weeks: dad’s cough, the car engine, the microwave, the seagulls….

Her favourite DVD (and only DVD) is “Baby learns Chinese.” When the green screen with the DVD warning comes on, she looks at me with a big smile, as if she can’t believe it is going to happen.

Who knew that it would just keep getting better and better? She is so much fun and so interactive! I can’t believe how much I love her.

We have started taking her to a music session, which she LOVES. The whole time she grins at the music teacher (from the safety of my lap or its surrounds), revelling in all the sound. She dances and sings along, and when the silky parachute comes out, it is all I can do to keep her from crawling right on to it to be buoyed up by all the mothers.

She is our delight. She is cheeky and wilful and a little bit complicated. She is thoughtful and perseverant and smart. She is manipulative and coy and thoughtful. She is the Moopet package, all in one.