Tuesday, December 23, 2014

The Dead Kid Card

Uncharitable post ahead - warning.

There's an awesome movement going on in Australia that has one of the most potentially inappropriate names ever, given that it is around playgrounds - 'Touched by Olivia'. Let me tell you about it.

Olivia was a little girl - a baby, really - who died of some awful rare disease in 2006. Like so many parents who have lost a child to some tragedy, her mum and dad decided that they wanted to give her life meaning by working for something really worthwhile. So they started this campaign for inclusive playspaces, called 'Touched by Olivia'. It is a great campaign, with incredible successes - check it out. http://touchedbyolivia.com.au/

But the campaign began in the name of a Dead Kid.

The campaign itself is not my issue. Not at all. Any time something good can come out of something terrible, that is a good thing. I understand that grief and anger is often best channeled into something productive, and I have seen this over and over again. Drink driving campaigns, changes to laws around domestic violence and other crime, all those things often come out of awful tragedies, fuelled by the will of a family to make it right. The 'Coward Punch' campaign is a good example.

But the other side of it is this - when your child dies, especially senselessly, you win something at the same time that you lose something, something that can never be replaced. Whether you like it or not, you now own a Dead Kid Card.

How you play that card is not my concern. I truly believe that there is no intentional exploitation by families to on-sell the image or memory of their Dead Kid - it is always, always out of a genuine desire to commemorate someone dear to them, to make a difference for others in the name of their loved one. What I am interested in, and critical of, is our willingness to engage with that process. We, the consumers of inspiration porn, pity porn and grief porn, especially in the disability sector.

Here are some examples.

Damian and Rae Panlock established the Brodie’s Law Foundation in memory of their 19-year-old daughter, Brodie, who tragically took her own life in 2006 after being relentlessly bullied at work. The Alannah and Madeline Foundation was set up in memory of Alannah and Madeline Mikac, aged six and three, who were killed with their mother and 32 others at Port Arthur, Tasmania, on 28 April 1996. Children365 was developed after the death of Darcey Freeman, aged four, in January 2009. Following her death, it was the wish of the family that there be some positive action out of such a terrible tragedy.

There are thousands of these things. I think that it is wonderful that a young life should be commemorated, that someone's name should be remembered in a positive way, that good can come out of senselessness and brutality.

But then there is the Dead Kid Card response. I think it is fuelled by the same wave of grief porn that incited people to put cricket bats outside their homes, to march with 30,000 others to mourn Jill Meagher's senseless murder, to place a sea of flowers outside a cafe at Martin Place. Collective grief and pity, united and incited.

Here's the question - why are we more willing to support laws and donate money or take action in memory of a Dead Kid than a Live Adult?

This applies especially to the disability sector. There is nothing more powerful than an Angel Baby. It is unarguable, unassailable. That parent now has the card that they never wanted, a powerful hand, a bargaining chip in some war or another to make something right. They are afforded a heartbeat of respect, a genuine outpouring of sympathy, a real desire to make amends for something unfixable, to do something, anything, to help.

But what about the live babies, those who have grown to often unattractive adulthood? The ones who are unsupported by governments - some people with disability cannot afford more than two showers a week - and disregarded by society? Those who are isolated and segregated and excluded and ignored? Why do we not care about those people, too?

Their images are not marketable - their stories are not appetising. Compare Iris, who snatches headbands off babies in public and lives in an institution and has no teeth, to Jessica, who died at six months and is forever frozen in a beautifully frozen Photoshopped montage on a screen at a charity ball. Iris is never going to be able to compete with the Dead Kid Card. And Jessica will never grow up to drool in public, or shout at strangers, or snatch headbands from babies. We don't need to shut her away in an institution, nor address her support issues. Yet we're happier to donate our Dead Kid dollars, march in a Dead Kid March, attend a Dead Kid Ball, than we are to lobby for Iris.

Iris's image and story was used some months ago in a campaign by parents to keep an institution open. No Dead Kid Card available to play, and pity won't work - Iris's image is not a commercially acceptable one. She is not young, nor is she portrayed as being beautiful - nobody cared enough about her to save her teeth. And so the advertising tells us that we should be afraid of Iris, that she does not belong in the community - the meme uses fear and pity to tell us why we should campaign against the closure.

No 30,000 strong marches for Iris, let alone her rights to live in the community amongst others. No bats placed outside the door as a show of support for former cricketer David, who broke his neck and has lived in a public hospital for thirty years. No sea of flowers for Joanie, who was raped in care dozens of times and is still stuck in the same group home with the same staff who covered up her rape.

To all the parents of those beautiful children lost - because all children are beautiful - I extend my sympathies and warmest thoughts and support to you at Christmas time, the hardest of all days. Like many other parents, I am no stranger to miscarriage, stillbirth and death, which has touched my immediate family. But to the rest of Australia - let's stop this unhealthy obsession with grief porn, and give equal time and attention to the living, especially those who are exceptionally marginalised.

Let's make 2015 Year of the Live Adult.

Image description - On one side of the image is a sleeping baby, dressed in an angel costume, with wings. The text reads 'Until we meet again, rest in the clouds, my Child...' On the other side of the image is an image of a middle aged woman wearing a headband. Her eyes have been pixellated to conceal her identity, as have her details. She has no teeth. The text reads ' yrs - has a severe intellectual disability. loves her personal belongings, especially headbands, bangles and rings. gets very excited in anticipation of special events. Christmas is her favourite time of year. She walks independently around the community in safety. displays high risk behaviours when in the community, stealing items from shops, grabbing babies headbands, self injurious behaviours and rips parts of clothing from members of the public.

Wednesday, December 17, 2014

I Wish I Had Killed You Before You Were Born

I didn’t want you. I wish I had killed you before you were born.

That’s not what is written in this article, but that is what I hear. I read this article today, a story about a couple who terminated their pregnancy at 28 weeks – because their child had a slight physical deformity.

Frank and Cindy had a scan, and the scan confirmed their fears: their child was suffering from a deformity, one that would cripple its left hand. The hospital’s board of ethics approved the termination on the basis that the foetus had a disability.

A crippled left hand. I read the article, sitting in my wheelchair, and I thought – if that pregnancy was terminated because of a physical difference, what hope would there have been for me?

There’s a lot to consider when talking about late term termination of pregnancies. 28 weeks is a viable pregnancy – strangely, the foetus was at more risk inside the uterus than out, because it had a disability. Although there are no abortion statistics collected in most states of Australia, statistics show that over 90% of foetuses who test positive for Down syndrome are aborted. And 28 weeks is not an unusually lengthy late termination date – in 2000, a woman requesting pregnancy termination was referred at 31 weeks gestation. The termination was granted on the basis that the woman was suicidal, and the child had been diagnosed with skeletal dysplasia, or dwarfism – it would be shorter than other people.

Thirty one weeks – I had to count that up on my fingers. Almost eight months, the time when my own children were rolling impatiently and kicking like footballers and wedging their tiny feet under my ribcage. I could hardly imagine having a scan and finding out that they were different from other babies – but I could not imagine at all making the decision to end their lives before they had begun. Perhaps if they were doomed to immediate and interminable suffering and a lifespan of hours, but not on the basis of eugenics, never that.

The University of Melbourne's Lachlan de Crespigny is an advocate for late term abortions, and it turns out that he was one of the treating doctors in the termination of the pregnancy above, of the 31 week old foetus.
"Women have the same rights as the rest of the population in deciding what to do with their bodies, so do you see them as a pregnant woman, someone who doesn't have that right to decide and must carry that foetus - that it is the role of the Catholic Church or parliament to decide for her?" he says.

Women have the same rights as the rest of the population – but who cares about the rights of the disabled foetus? Who cares that a child with disability will not even be given the right to exist, on the basis of the parents’ fear about disability and society’s inability to give us the respect and value that is our right?

The Liberal Party and the Christian Democrats proposed a controversial law in NSW in 2013, the so called ‘Zoe’s Law’. The law was designed to enact foetal personhood, but was defeated after an outcry from women’s rights groups. The law was designed to punish people who assault pregnant women, when that assault results in miscarriage – but concerns were raised that foetuses should not be granted legal personhood in their own rights until they achieve an independent existence outside the womb.

That delicate balance between reproductive rights and disability rights. As a woman who considers herself pro-choice, I am torn by the idea that women should select babies on the basis of their idea of perfection.

Five days ago, a Sydney mother who drowned her six month old baby in the bath was found guilty of murder – the had become obsessed with the idea that her daughter was suffering from dwarfism or some other genetic abnormality and had begun to view the child as "an imposition”. She told a friend that if the baby was found to be "abnormal" she would take her and ‘jump off a cliff’ or ‘throw her in the bin’ and told a family member it was ‘better to deal with a terminal illness than a lifetime with a dwarf’.
I don’t want you. You are better off dead. If there had been a test for muscular dystrophy before I was born, I might not have been here. You are not perfect, you are not worthy…even of life.

I cannot help but think that if Cindy, or the mother who drowned her child, had met an actual, real live person with a disability, they might have changed their minds. If they’d met a young man or little girl with a limb difference and watched their delight as they showed their school friends how they could catch a ball or do up a shoelace one handed – if they understood that their difference was the least important thing about them. If they’d met people from communities of short statured people and understood that they are ordinary people who sometimes need a hand to get something off the top shelf at the supermarkets. If they’d known – or if they had been told, or shown – that a good life is not just possible, but probable.

Cindy says that she felt guilty about giving birth to a child with a disability and felt that she must be to blame for the condition.

"I grew up with many people who were disabled, and… there was discrimination," she said. "I didn't want my child to be discriminated against. The problem is... obvious because it is the fingers, and I think the child would have a very hard life."

Cindy didn’t want her child to suffer, and so she killed it. The ultimate discrimination, enacted.
I don’t want you, you are less than I am. Less than we are. You’re better off dead.

Richard Dawkins says that babies with Down syndrome should be ‘aborted, try it again…it is immoral to bring it into the world.’ Anne Furedi, a leading abortion advocate, argued that 'to deny this woman's choice is to condemn her to carry to term and give birth to a child that she may dread and wish dead.' We should not be dreaded, as though we were monsters – we deserve to take our place in society as equal citizens before the law and in society.

If you deliver a stillborn baby after 20 weeks gestation, you must register it as a birth, name the child, bury it or cremate it. I wonder if this is the case for disabled foetuses whose lives have been cut short before they began - and what kind of indictment it is on our so called 'civilised' society that we allow this to happen.

“Although eugenics flourished in Nazi Germany, the ideal of a blond-haired, blue-eyed master race wasn’t Adolf Hitler’s. It may surprise many to know that, in Mein Kampf, Hitler credited America with helping formulate his ideas on eugenics, and he admitted he’d studied the laws of US states to familiarize himself with selective reproduction and other eugenics issues.”

― James Morcan, The Orphan Conspiracies: 29 Conspiracy Theories from The Orphan Trilogy

Tuesday, December 2, 2014

I Have A Dream

In 1963, Martin Luther King delivered what became one of the most famous speeches of all time – ‘I have a dream’.

Tonight, on the eve of International Day of People with Disability, I wonder what that dream would have looked like had King been Australian, and disabled.

He might have talked about Australia signing the Convention on the Rights of Persons with Disabilities, six years ago. He might have said that this came as a ‘great beacon light of hope’ to thousands of Australians who had been ‘seared in the flames of withering injustice’. That it came as a 'joyous daybreak to end the long night of our captivity'.

He almost certainly would have agreed that in 2014, people with disability, like African American people in 1963, are not free. He might have agreed that we are still sadly crippled not by our physical, neurological, or intellectual condition, but by the ‘manacles of segregation and the chains of discrimination’. Like the African American people of 1963, people with disability ‘live on a lonely island of poverty in the middle of a vast ocean of prosperity’ – that we ‘languish in the corners of (Australian) society and find ourselves exiles in our own land’.

King talked about going to the nation’s capital to cash a check. He said that when the architects of the American republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promise that black men, as well as white men, would be guaranteed the ‘unalienable rights’ of ‘life, liberty and the pursuit of happiness’. King might well have looked at the United Nations Convention on the Rights of Persons with Disabilities and declared another sacred obligation defaulted upon – the Australian government, in those six years, has given Australians with disability a bad cheque, a cheque that has come back marked ‘insufficient funds’.

We can count our winnings, which seem enormous when judged against the imbalance of our struggle, miniscule when judged against the magnitude of the work that is left undone. The National Disability Insurance Scheme, trialled in almost every state. A voice that is becoming steadily louder, and growing with confidence. We can count that which has come to pass and celebrate our successes. We can revel in our achievements to date, and take a moment to reflect on how they came about.
But like King, we should also be reminding our people of the ‘fierce urgency of Now’.

‘This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism,’ he said in 1963. ‘Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of…justice. Now is the time to lift our nation from the quicksands of…injustice to the solid rock of brotherhood. Now is the time to make justice a reality.’

The fierce urgency of Now. Now, whilst we have momentum, we must demand that the wrongs of the past are redressed, that we move into the future as equal citizens before the law and the community. The eyes of the nation are upon us, so we must demand our rights, not ask for them. King said, back then – ‘There are those who are asking the devotees of civil rights, ‘When will you be satisfied?’

Our answer might be that we can never be satisfied as long as people with disability are the victims of unspeakable horrors in residential settings.

We can never be satisfied whilst our brothers and sisters remain unemployed, or are paid wages far below the wages of others, despite working as hard or harder than their non-disabled peers.

We can never be satisfied as long as we are stripped of our self-hood and treated as pitiable objects of welfare and charity, or isolated and segregated due to people’s attitudes.

We can never be satisfied whilst we are shut out, shut in or shut up.

No, no – we are not satisfied, and we will not be satisfied until ‘justice rolls down like waters, and righteousness like a mighty stream’.

On one day every year, the world joins to recognise the rights of people with disability and celebrate their achievements, and that day is December 3. Like King, I have a dream. A dream that is deeply rooted in Australian values – equality of opportunity, respect, freedom and a spirit of egalitarianism that embraces mutual respect, tolerance, fair play, compassion and pursuit of the public good.

I have a dream that disability apartheid will become a thing of the past – that no longer will we be segregated in schools and at work, shut into institutions and shut out from the freedoms and responsibilities of everyday Australian life.

I have a dream that mothers will no longer murder their children because the fear of institutionalisation, a fear worse than death. I dream that people with disability will be safe from rape, violence and abuse in residential settings.

I have a dream that one day people with disability will no longer be living in poverty, disadvantaged, discriminated against – that we will work, study and live on equal terms alongside our non-disabled peers.

I have a dream that we will one day live in a nation where we will not be judged by the way we walk, talk, think or move but by the content of our characters.

That is my hope, and the hope of thousands of other people with disability living in Australia. That we cease to be invisible and take our rightful place beside our fellow Australians.

If we are to become a great nation, that must happen. We must elevate people with disability into positions of power to address power imbalances and involve them in decisions at every level of government. We must address and redress the injustices of the past, including carrying out a national inquiry into violence, abuse and neglect of people with disability in residential settings. We must make sure the words written in the CRPD have meaning, that they are not consigned to being meaningless marks on a piece of paper.

For people with disability, we must retain hope and confidence in equal measure, and speak up for ourselves. We pass through this life but once, and we have enormous potential to make changes that will resonate for people with disability far into the future. It is time.

The fierce urgency of Now is upon us. And we have a dream.

Let’s make it happen.