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.

Tuesday, November 25, 2014

An open letter to Prime Minister Tony Abbbott and Senator the Hon Mitch Fifield, Assistant Minister for Social Services and Manager of Government Business

Dear Tony and Mitch

On Monday, a Four Corners episode aired on ABC, where people with disability told us about being raped in care. They told us about coverups by the organisation, and failures to act on complaints. Other people with disability told us that this is a nationwide epidemic and that people living in institutional and residential care settings are being raped and abused or neglected every day.

You told us that it wasn't your responsibility, but you'd do something in 2019 when the NDIS had rolled out. It is someone else's responsibility, you say.

As of this morning, 3,417 petitioners disagree. They are calling for a national inquiry into violence, neglect and abuse against people with disability in residential and institutional settings. So are peak disability bodies, including People with Disability Australia, http://ymlp.com/z6IlfO, the Australian Federation of Disability Organisations. So is the former Disability Discrimination Commissioner, Graeme Innes. So are thousands of people with disability and their families around the country.

It needs to stop now.

Why is it a Federal issue? There are many reasons, but the reason that people are still being raped and abused in care every day is because there has been no attention to this hidden shame from a Federal level. People with disability living in institutional settings are specifically excluded from the National Plan to Reduce Violence against Women. There is no national coordinated legislation to prevent and address violence against people with disability. There is no independent, statutory national protection mechanism to protect, investigate and enforce findings related to abuse experienced by people with disability.

Even your own mechanism, the National Abuse and Neglect Hotline, stops us being heard. If we report abuse or neglect in a government funded service, we are referred back to that same government body to deal with the complaint 'locally'. And the data from that hotline is kept secret, and is not available to the public.

On Monday, a brave woman named Jules Anderson detailed how she was raped by a support worker whilst she was in care. This was not a one off occurrence by a malevolent individual - this happens every single day. Our children come home with injuries which are unexplained.

One friend has a fourteen year old daughter who does not use spoken language - she came home from her day program with a tear to her vagina so deep that it required surgery. Nobody was accountable. The daughter of another, who lives in a group home and has full time care, became mysteriously pregnant. No paternity tests were conducted. Another has a child who was raped on a school bus - another, a brother who comes home every month with bite marks, bruises, grazes caused from being dragged across a carpet. Nothing happened. There are thousands of stories every day, that we people with disability, parents and support workers hear about. Parents smother, starve or murder their children rather than put them into care, because they know what happens to people with disability living in institutional settings.

People living in boarding houses and other institutions like the Grand Western Lodge are being physically and sexually assaulted by staff and other residents, have died in appalling circumstances and have been denied basic rights. It is an aberration that we are being beaten and killed and raped - 90% of women with intellectual disability have been sexually assaulted in their lifetime, did you know?

Waiting until 2019, until more people with disability have been beaten and raped and killed in care, is not an option. This is a national emergency that affects your most marginalised citizens. The United Nations treaty monitoring bodies have made strong recommendations to Australia in relation to urgently addressing all forms for violence against people with disability. You have a responsibility to act, and to act immediately.

We tell you now that we will bring our stories forward, person by person, and follow the example of Jules and the other people who had the courage to tell their stories. We stand together as parents, support workers and people with disability to bring Australia's hidden shame into the light and to right the wrongs that have been done to us. We call upon you and other decision makers in Australia to take immediate action to ensure that people with disability will no longer be raped, abused or neglected in care settings.
'We're here and we're here to stay. And you or noone is going to change that...get off your backsides. Do something about it.' - Craig McDonald, person with a disability and whistleblower against violence and abuse



Samantha Connor, disability activist, and the 3,470 supporters of the Petition for a National Inquiry into Violence, Neglect and Abuse against People with Disability in Residential and Institutional Settings

Wednesday, November 5, 2014


22 hours after the unexpected deaths of two horses at the Melbourne Cup, animal rights activists are calling for immediate changes within the racing industry to prevent any more unnecessary deaths.

One horse broke his leg. Another collapsed in the stalls, dying from heart failure. There are statements from the racing industry, campaigns with 22 metre billboards with the question ‘Is the party really worth it?’ and public outrage.

And somewhere in America, a six year old boy was thrown over a bridge to his death.

We are collecting stories of the murders of children and adults with disability in an almost dispassionate way this year. There’s little London, thrown 133 feet from the Yaquina Bay bridge. His mother called the police to tell them what she’d done. Across the ditch in the UK, a mother won the right to end the life of her disabled child, Nancy, in a country where euthanising non-terminally ill children is illegal. A Michigan woman, Kelli Stapleton, attempted to murder her 14 year old autistic daughter, Issy, by poisoning her with barbeque briquettes in a van. In Manhattan, a woman named Gigi Jordan stuffed painkillers and anti-inflammatories down eight year old Jude’s throat, killing him. Last year, in Australia, a woman was given a suspended sentence for starving her 29 year old daughter, Kyla Puhle, to death. 14 year old Alex Spourdalakis, stabbed to death by his mother. The list goes on.

Yet there are no billboards protesting the deaths of children with disability. No public outrage, except from a handful of disability and autism groups. And an upswell of acrimonious internecine rivalry between parents of children with disability and people with disability – many parents blame carer fatigue, lack of services and difficulty parenting children with disability, many people with disability argue that there is never an excuse for murder, when the alternative is to leave a child on a hospital doorstep or relinquish him or her into foster care.

Complicated, right? All discussions held from afar are complicated, and they are often held remotely and after the event and in the absence of real facts. Bystanders can only speculate from their own perspectives. I do not know if London’s mother was mentally ill, if she suffered from carer fatigue, if she considered that she had no other options. Likely, many of those assumptions are correct – many carers suffer from carer fatigue, and their mental health is reportedly poorer than any other population group. Options for relinquishment include foster care or an institution, where children and adults with disability are daily abused, neglected and put in situations where they are at risk of harm. Perhaps she did consider that she had no other options – but we do not know that. And are those considerations enough to throw your six year old to his death?

We know the facts. London was thrown, and he died. That his father had been ill – he has multiple sclerosis – and had lost his job. The family was in financial stress. We know the statistics, we know the issues, and we reiterate them over and over again in a dire prediction of further murders. Yet there are no billboards, no vigils – there is no outrage. We are more outraged by the deaths of two horses in a race in an Australian city than we are of the killings of children.

That, for me, is the outrage.

I think of little London being thrown to his death. He was carried by his mother along the bridge. Here is London. He had been diagnosed with autism. He was six years old.

Here is the bridge.

Can you picture it? His mother carried him along the bridge, hoisted him over the edge, and pushed him over the side. I cannot imagine what she said – if she was whispering words of comfort or hugging him, or whether she silently hoisted his body over, throwing him to his death. I can imagine what London felt, being hauled up by the person he trusted most in the world, looking down 133 feet to the water below. I wonder how long it took for him to hit the water, and what he thought before he did.

That, for me, is the outrage.

I think of Kyla Puhle. Her mother withdrew her day services and left her in a beanbag while she went to work. She was 29, and her parents withheld food or hydration from her until she starved to death. The police found her body in the same beanbag – she weighed twelve kilos.

I think of her mother, and I wonder what she said to the day services when she withdrew them. ‘Kyla won’t be coming here anymore’ – or, perhaps, ‘She’s taking a break.’ Angela was a high school principal. I wonder how she felt on that day her daughter died, sitting in her office whilst healthy children skipped around the school, laughing, with the auditory detritus of ‘normal’ ringing in her ears. I wonder if she had a silver framed photograph of Kyla on her desk, or photographs of her other children. I wonder if she turned that photograph face down.

Perhaps we are so reluctant to believe the unthinkable – that Mama, the loving person, the giving person, the one who has sacrified everything, would murder her offspring – that we manufacture excuses routinely and reject our outrage. Perhaps it is easier to believe in the myths – that a lack of services and support routinely causes mothers to murder, that nothing could cause a mother to violate a law of nature or rebel against instinct except the direst of circumstance. That children with disability are better off dead, anyway. ‘Altruistic filicide’ is forgivable, because you are saving your child from a fate worse than death - disability.

I can think of the murders of London and Kyla, and they fill me with horror. But that horror pales in comparison when I listen to the murder apologists reiterating their justifications for the killing of disabled children, or hear about juries who release murderers because they were ‘loving mothers’, or listen to the dearth of public outrage, the wild, howling silence in which the murder of a six year old child goes unmourned and barely noticed.

RIP Admire Rakti.

Wednesday, October 15, 2014

The Dignity of Slavery - or 'Why My Shoes Are Cheaper at Kmart'

We used to call them sheltered workshops.

That’s a thing of the past – they’re now branded as ‘Australian Disability Enterprises’, places where people with disability are routinely placed and where you can earn as little as $1.79 an hour. A kinder term, but ‘lipstick on a pig’ in the eyes of many. Workers are scaled by ‘productivity scaling’ – despite the fact that the government’s own productivity scaling tool (BSWAT) was declared discriminatory and illegal last year, productivity scaling in different forms continues in sheltered workshops around Australia. Sheltered workshops using the BSWAT tool have three years to stop using it, but their employees, or ‘participants’, are routinely paid far below the minimum wage.

That’s the picture in Australia, not in countries like the UK. In England, a social enterprise approach is used, where the organisation trades in the market and takes on a degree of business risk, as well as receiving a subsidy in compensation for possible reduced productivity of disadvantaged workers in order to allow it to compete on a level playing field with conventional organisations. Workers are paid the minimum legal wage, £6.50 ($11.80 AUD).

But a scandal hit the UK yesterday, where a welfare reform minister offered a ‘full and unreserved apology’ after information was leaked that he told a conference that some disabled people were ‘not worth’ the minimum wage. He faced immediate censure from charities, disabled persons groups and the Prime Minister and offered an immediate apology. From a news report;

“You make a really good point about the disabled. There is a group where actually, as you say, they’re not worth the full wage,” Freud said. “…without distorting the whole thing, which actually if someone wants to work for £2 an hour, and it’s working can we actually…”

In a statement issued by the Department for Work and Pensions, Freud said: “I would like to offer a full and unreserved apology. I was foolish to accept the premise of the question. To be clear, all disabled people should be paid at least the minimum wage, without exception, and I accept that it is offensive to suggest anything else.’

An outraged Downing Street distanced itself from the minister by saying there could be no exceptions to the minimum wage. The Prime Minister said, “Of course disabled people should be paid the minimum wage and the minimum wage under this government is going up and going up in real terms. It is now at £6.50. We will be presenting our evidence to the low pay commission, calling for another real-terms increase in the minimum wage.”

Come again?

A scandal because a politician holds views that people with disability should be paid under the minimum wage? But our country does that every day!

Two pounds an hour – well over double what Australia legally pays people with disability working in Australian Disability Enterprises – is a cause for national outrage in Britain, but causes barely a murmur in Australia. We speak with disdain about Indian sweatshops, but buy the shoes that disabled workers have packed and paired at Kmart with nary a word. We segregate people with disability into ‘special’ employment settings and exploit them financially, with a menu of work options that generally include menial, tedious and repetitive work. And we use meaningless phrases to validate our abrogation of our responsibilities – ‘dignity of work’ to justify paying people a few dollars an hour, ‘Australian Disability Enterprise’ instead of sheltered workshop.

So what does that look like for people with disability in Australia, where those with a disability earn wages equivalent to those paid in third world countries?

I sat next to a man last night who struck up a conversation with me. He was intelligent, casually dressed, personable. I did not know that he had a disability until he told me. And eventually the conversation turned to his past employment, which included a stint in a sheltered workshop, being paid $2.50 per hour.

“And the work,” he said.

“The worst kind of work. The most boring stuff you could imagine, and people have worked there for years. No wonder they are bored and unproductive – who in the real world has the same job for forty years?”

That view is reinforced by disability rights organisations, who say that packing goods, pairing shoes and sorting recycled clothes for decades in an ADE is isolating, financially exploitative and does not allow people to be able to progress in employment in the same way others do.

Samuel R. Bagenstos, the Principal Deputy Assistant Attorney General in the U.S. Department of Justice, agrees.

“[W]hen individuals with disabilities spend years — indeed, decades —in congregate programs doing so-called jobs like these, yet do not learn any real vocational skills, we should not lightly conclude that it is the disability that is the problem. Rather, the programs’ failure to teach any significant, job-market-relevant skills leaves their clients stuck. As a recent review of the literature concludes, “[t]he ineffectiveness of sheltered workshops for helping individuals progress to competitive employment is well established.”

A 2011 report - "Segregated and Exploited: The Failure of the Disability Service System to Provide Quality Work." – argues that people with disability have the right to spend their lives in the most integrated setting appropriate for them as individuals and that this could just as sensibly be applied to the employment setting.

A full and equal life in the community can’t be achieved without a meaningful, integrated way to spend the day.

All of this means nothing without listening to the stories and understanding that this is about real life for a community of Australians, who deserve to be afforded the same basic human rights as other Australians.

I hear them every day, those stories. Not just from people with disability - from their families and government and from those who run sheltered workshop operations. I can see the competing interests and the frustrations and understand the tensions. That does not abrogate our responsibility to treat people with disability as equal citizens with workers’ rights.

‘I earn $4.33 per hour, and I’ve worked there for over ten years. If you are working there, you are not legally allowed to apply for another job until you quit that one.’
– a sheltered workshop employee in WA

'As a supported employee of (name of sheltered workshop), this letter is to give you information in regards to obtaining 'open employment' with a disability employment service. Open employment is when people work for an employer that is not (name of sheltered workshop). Examples are McDonalds, Kmart, KFC. To be eligible for open employment, you need to be assessed by Centrelink. (name of sheltered workshop)can assist you with this. One of the eligibility (sic) is you cannot be registered with any other government funded employment agency. This could affect your employment at (name of sheltered workshop). If you would like to discuss this opportunity in more detail, please speak to your supervisor.' - a letter sent to sheltered workshop employees in WA

‘They have separate lunchrooms, the employees and the staff…that’s what they call them. The staff are the people who don’t have a disability. They started calling the employees that when someone made a complaint about the word ‘participants’, but they still get paid less than half the basic wage.’ – a staff member at a sheltered workshop in Queensland

‘In some places, they pick up the workers and drop them off in buses, and they take the transport costs out of their wages.’ – a South Australian disability advocate

‘He likes his friends there. He’s been there for twenty two years and likes going to work. I’m sixty now and I can’t look after him all day. He’s never had any funding – I don’t know what I would do if he was not at work.’ – a mother of a forty year old man with an intellectual disability

‘I can’t buy a house and I can’t earn too much money because I will lose my pension if I do. And I can’t move out or rent or do anything, really. I can’t buy my mother a birthday present.’
– a sheltered workshop employee

'She's too disabled to work anywhere. She doesn't work, really. I can't imagine her doing anything else' - parent of a young woman with a 'severe and profound' intellectual disability

'He worked as a swimming teacher at (a therapy clinic). They passed him around in the pool to learn how to handle young people with cerebral palsy, and he knew the difference between when he was in the pool recreationally or when he was at work - he would hold himself differently. He was paid award, casual rates.' - parent of a young man with spastic quadruplegic cerebral palsy, a 'severe and profound' intellectual disability and a vision impairment

‘The average job tenure in Australia is about seven years – in Portugal, it is almost thirteen years.’ - OECD.Stat; Australia at Work W1

Image description - a graph that shows that Australia has the lowest of a range of countries for job duration.

‘They gave me an award when I had been there for twenty five years and they said it was like I was one of the family.’ – a sheltered workshop employee

Image description - a page from the Activ newsletter which provides a list of 'Supported Employee Service Recognition, January to March 2014' Many of the employees have been working for over thirty or forty years.

'The NDIS is a great welfare reform, but the elephant in the room is that it is not tied to bricks and mortar. The NSW government has withdrawn from providing residential accommodation for people with disability. Without people being able to work for a normal wage so they can pay rent or save like others do, there is a great risk of homelessness or further disadvantage...it's hard to be supported well when you are living on the street.' - a NSW disability advocate

'It is a mistake to isolate the hourly rate of a supported employee as the only benefit they receive....they are given the opportunity to experience the dignity of work and to socialise with peers.' - Mitch Fifield, Assistant Minister for Social Services and Manager of Government Business in the Senate.

'I wonder if anyone has told the people working in overseas sweatshops that they have the 'dignity of work'. Or that they're 'respite' for the family.' - a WA disability advocate

‘They were better, more honest, when they called them ‘sheltered workshops’, I thought. At least then they were regarded as a stepping stone to employment, somewhere you could get ‘ready’ or get ‘trained’ for work and try a variety of different kinds of work that would suit your skills and employment aspirations – now you’re stuck there forever.’ – a long term employee at a sheltered workshop in WA

‘He is paid $4.79 an hour, and after extracting administration fees and insurance premiums, he is left with $5.49 per annum in his super fund - who else would be happy with that?'
– parent of a young man working in a sheltered workshop

Image description - A screenshot of a workers super account details, which show payments of $65 in administration fees, insurance premiums of $83.39 and a closing balance of $5.49.

Is it possible, shutting sheltered workshops and moving people to integrated employment within the general workforce? Without a doubt. In the US state of Vermont, a quiet revolution has been taking place. The abolition of sheltered workshops has seen more than a third of Vermont’s disabled citizens employed, with average pay rates more than $2 above the federal minimum wage. All that is needed is a change in attitude and a collective will to make it work.

At the heart of it all lies the great dilemma – that treating people as second, or third, or fourth class citizens suits our agenda. We do not have to pay for people’s disability care and support when they are at ‘work’, and it is easier to segregate and isolate and exploit people than to change cultures and environments so that people can enter mainstream, competitive employment. They are out of the way, and happy – they love their ‘mates’, they’ve worked alongside them for twenty or thirty or forty years. And at the end of the day – our shoes are cheaper when we buy them from Kmart.

People with Disability Australia are running a wage justice campaign around this topic. You can read about it here: http://www.pwd.org.au/campaigns/real-wages-for-real-work.html

Friday, October 10, 2014

Pity Porn - It's a Headf**k, My Friend

Long before I used a wheelchair, another person with muscular dystrophy looked at me kindly and told me this.

“It’s a headfuck, my friend,” she said.

“One day you can do something, and the next day you can’t. And you wonder when you lost that ability, and how many other abilities you will lose.”

I nodded and agreed and didn’t really think much about it. I’d always known I had a disability, and my official diagnosis – of limb girdle muscular dystrophy – had arrived when I was twenty three. And then one day, I went to brush my hair, and my arm felt like it had lead weights attached to it.

It is a funny thing, those changing benchmarks and the way they affect you. The next day, I went and had my long hair cut short (my daughters were dismayed) and joked about it without telling anyone how heavy the hairbrush had become, how unwieldy the hair straightener now was. Just like I hadn’t told anyone how I could no longer shake a doona into a doona cover, or why the kettle was only half filled, just enough for one cup of tea or coffee.

The biggest benchmark, of course, was the moment that I started using a wheelchair.

Impossible to conceal, and the biggest issues are not around the physical barriers but around the societal barriers. People look at you differently, treat you differently. Last week, I was in a shop, and a little boy came up and asked me what ‘fruit’ that was that I was buying. I smiled (it was asparagus) and smiled more when he said ‘sparrow grass’. A delightful conversation, all in all, until his mother came over and told him to stop talking to me. That’s okay, I told her, we’re having a chat. No, she said. I don’t let him talk to people in wheelchairs, they might have diseases.

You understand, perhaps, how this would affect a person’s psyche. You are no longer regarded as a mother, an employee, a wife, a pet owner, a member of the community to be treated as any other. You can’t get a job because of it – you are routinely discriminated against because of it. It takes its toll, all that – and add to it the never-ending fear about will happen in ten or twenty years when you need a lot of disability care and support, knowing that it is not there. The thought of living in a nursing home at fifty, the thought of the resigned look in your child’s eyes when you are no longer their parent, but their patient. Wondering whether you will ask your husband or your child to change your tampon, or whether you should choose the gun or the knife or the rope, if you are still able. That terror is mitigated a little when you know others who have high support needs and who live a good life – but imagine that terror that a newly diagnosed person with a degenerative illness feels at the point of diagnosis.

Enter the Multiple Sclerosis of WA.

Imagine the shiniest of charities, with a glossy annual report, a 30 million dollar turnover, ongoing raffles and charity houses and sparkling six bed ‘facilities’ for young people broken out of nursing homes. The ‘business of disability’ is prominent in their advertising and the board is predominantly made up of people with business and financial management acumen, with a couple of high profile medical professionals and a few people with multiple sclerosis.

That’s the organisation that created the ad that hit the headlines a few days ago. It was a confronting and controversial TV ad, part of a bigger advertising campaign, designed to strike fear into the hearts of the community and tug on their heart strings. The ad, named ‘Trapped’, portrayed a woman trapped in a Perspex box, desperately trying to smash her way out. Cut to a sympathetic nurse asking if she is all right – the woman sits in a wheelchair, unable to move, and a single tear trickles down her cheek.

People with multiple sclerosis were outraged. One woman in the early stages of MS slammed the ad saying it "put fear into her kids".

"This is a terrible ad...It put fear into my kiddies as my disease is nothing on that level... And to say if I ever meet a partner being open with my health ... He run a mile thinking I'll end up in that state.... I'm disappointed ... U made my disease look so horrific."

Another person with MS said the ad was "shocking".

"What exactly are you ppl trying to achieve???? Decrease our work opportunities ? Traumatize our children with the worst case scenario. What if the Cancer Council used the same low tactics?"

Within hours, the ad was removed, with CEO Marcus Stafford posting a sombre apology for removing the ad and distressing members.

For the rest of the world, that is where it ends. They screened a controversial ad that portrayed disability in an incredibly negative light, showed a story that depicted the circumstance of only a few of their members – most people with MS do not experience the level of disability depicted in the ad – and removed it after a public outcry. Good, people say. It’s over. And it was only an ad.

Look at it a little more closely – look at it from the perspective of a person with disability who is *in* the disability sector - and the implications are terrifying.

The MS Society recognised the ‘risk’, clearly, that some of their members would be damaged by the advertisement, that the public perception would be damaging. They explained it away in a letter to members – ‘Market research has shown us that more hopeful/positive stories have little, or no impact, for those who are not aware of MSWA…consequently, a reduced audience response will result in fewer donations from the public, and quite simply, that will threaten our plans….we appreciate that…showing these hard hitting details may leave you feeling uncomfortable and even confronted, particularly if the diagnosis of MS is new to you and your family.’

The FAQ’s attached to the letter are even more revealing. ‘Why are you using fear rather than a positive approach? …we’ve carried out research to determine what does and what doesn’t spark positive action from viewers. What we’ve learned is that the more confronting the advertisement, the more it inspires people to stand up and take action in support of the issue. In this case, finding a cure for MS.’

In other words – we knew it would cause incredible harm, but we did it anyway.

I watched the 'Trapped' video – you can see it here – and thought about why you’d choose to portray people with disability as tragic and pitiable objects of charity. Why, to raise money, of course.

It’s a headfuck, my friend.

There are things that people with disability know when they’re *in* the disability sector that make this act a hundred, a thousand times worse. Aside from the terror experienced by women who are not sure who will change their tampon in the future.

If you’re not *in* the disability sector, you would not know about the bright, beautiful and utterly miserable woman with multiple sclerosis who has been locked away for over a decade in an old C class public hospital – the Quadruplegic Centre, an institution in Shenton Park. She desperately wants to leave, but cannot get enough care and support – and has never been assisted in any way by the MS Society of WA.

Text description: The hallway in the Quadruplegic Centre, outside the residents’ 12 x 12 rooms

If you’re not *in* the disability sector, you would not know that Australia rates 21 of 29 of all OECD countries for employment of people with disability, with less than two percent of people with disability employed in the public service. You wouldn’t know that the biggest reason cited for unemployment was not lack of access, but employer attitudes.

If you’re not *in* the disability sector, you would not necessarily understand that the idea of being recipients of charity lowers the self-esteem of people with disability. Because people with disability are seen as tragic victims, it follows that they need care, are not capable of looking after themselves or managing their own affairs, and need charity in order to survive.

There is no cure for multiple sclerosis, and there are thousands of people with MS and other degenerative disabilities living without support around Australia. Only a few percent of the charity’s fundraising goes to ‘research’ – yet the aim of the ad was to raise funds to find a cure, they say. Yet in the letter to members, the ‘aim’ is to ‘raise awareness and educate the public’ – by portraying a fairly atypical story via a ‘shock’ advertisement – to raise funds, and to ‘position MSWA strongly in preparation for the launch of the National Disability Insurance Scheme’. Can you hear the clang of cash registers?

At what cost are these advertisements run? In the eyes of ‘pitying’ donors, charitable giving carries with it an expectation of gratitude and a set of terms imposed upon the beneficiary. The first is patronising; the second limiting upon the choices open to disabled people. We’re charitable cases, and you don’t need to employ us, nor put in a ramp, nor meet social or economic obligations in any other way – ‘I made a cash donation to those people on the phone last week’, and it made me feel good about myself.

Do we still need charity? Sure. I think caring, charitable acts enrich our society and reinforce the idea of community. But not at any cost – and especially not at cost to people with disability who will be penalised in other ways. If they’re using our images, our names, our cause to raise funds, we should have a say in how we are depicted. How hard would it be to actively include their members, or put together formally recognised community reference groups that approve marketing campaigns and inform the charity about community need? Why can't charity managers review the way they operate, actively involve people with disability and ensure that funds are channelled towards initiatives that will promote inclusion into society as equal citizens?

We need support. We need funds for research. But we also need respect, and a voice, not your pity.

It’s a headfuck, my friend.

Thursday, September 4, 2014

Last year I had five cards. Now I have fifty.

A few years ago, I started a Facebook group.

A simple concept, ripped off (with permission) from across the ditch. Stories collected from people, from news and autopsy reports, about people with disability being abused or neglected, raped or murdered. Stories transferred onto teeshirts or created by people who had been victims and who were now survivors. And most poignant of all, the stories of those men and women and children who had been murdered – often by their loved ones.

It’s gruelling work. Each story is catalogued in an effort to look at where and when and how and why. Themes emerge. Repeated abuse, often sexual abuse, in residential care. Pregnancies in institutions, and women who are sterilised to ‘protect them’ from pregnancy, rather than rape. Unsupported carers, worn down by caring, killing their children and never, ever going to prison. What’s the point? They won’t do it again. And the unspoken words are never whispered, but always heard – ‘It was a blessing.’

I just watched a movie, called ‘The Lonely Heart’. It’s about the beginning of the AIDS epidemic, where people were terrified for their lives and where nobody wanted to know. The main character runs a helpline and collects cards with the names of people who have the then undiagnosed condition, and he stands at the funeral of a friend, and he speaks.

‘Last year I had five cards. Now I have fifty. Collection of cardboard tombstones bound together with a rubber band. I hate these fucking funerals, and you know what else I hate? I hate the memorials. That’s our social life now, going to these things. Nick was a choreographer. I don’t know if any of you knew that. He was just starting out; he didn’t tell a lot of people. He was waiting to invite you to his big debut at Carnegie Hall or some shit so we could all be proud of him. But he was so good; he had such promise. We’re losing an entire generation. Young men at the beginning… just gone. Choreographers, playwrights, dancers, actors. All those plays that won’t get written now, all those dances never to be danced. In closing I’m just gonna say I’m mad. I’m fuckin’ mad. I keep screaming inside ‘why are they letting us die? Why is no one helping us?’ And here’s the truth, here’s the answer: they just don’t like us.’

It resonates with me in a way that nothing else has. I paint my ‘cards’ and write the names and bind them together in ways that make sense to me. Boys who have drowned in respite homes when their carer has left them unsupervised, many of them. Girls who have been murdered after someone finds out that they are pregnant. Children who have been stabbed or starved or shot or thrown, hundreds of them. We’re losing an entire generation.

There’s a difference. There shouldn’t be, but there is.

Of the hundreds of dead children, of battered and raped adults, I have only a few photographs. You see, they were and are people with a disability.

We’re protected – our faces are hidden, like our bodies. No Facebook pages, no name revealed on a Google search – even in death, we’re rarely referred to by name. We’re locked away in institutions and isolated by disability and routine segregation. That whole generation – we are rarely people who will be choreographers, playwrights, dancers, actors that others will know about. We’re not allowed to choreograph our own lives, write our stories, dance in the morning, act out the roles that others take for granted. And when we die or are raped and bashed, nobody cares.

I look at the last few stories on the Clothesline page.

There’s Freddy, who had been in a locked ward for 25 years. When he was found dead in the bathroom, his face bashed in and a plastic bag twisted around his head, the police found that his death was self-inflicted. There was one problem. It wasn't. Nobody has ever been charged with his murder.

There was Daniel, who needed a lot of care and had been subjected to cold baths, punished by being made to lie in a starfish position, gagged, bound locked in a cupboard, beaten and repeatedly abused. Then he was killed by the babysitter, with the help of his mother, and buried under a house, to be dug up by dogs some years later. Nobody has ever been charged with his murder.

Three disabled men from the Sunshine Lodge, dead within 70 days. Complaints of neglect, awful conditions, malnutrition - they turned off the heating at 9pm to make people stay in bed. And when the Coroner requested the files, a fire was deliberately lit. Nobody was held responsible for their deaths.

And the abusers – when they’re caught, if they’re caught, we let them go. Seven children between the age of six and thirteen, allegedly sexually abused by a South Australian bus driver, all with intellectual disabilities. The charges were dropped because the children, under South Australian law, were unable to testify. Kyla Puhle, starving to death and alone whilst her school principal mother went to work, twenty seven years old and dead in a beanbag – she weighed 12 kilos. Her father shot himself when arrested and her mother walked free with a suspended sentence after being convicted of manslaughter. She had removed Kyla from her day programs prior to her death.

The judge commented that her mother had suffered a lot. Because she had a disabled daughter, but also because she had lost her job.

I read these stories and I know nothing much is being done. But what horrifies me is the lack of public outrage, and what that says about the way other people think about us. As mistake, as burden, as a casual accident of nature that shouldn’t be given the opportunity to write their own stories. All those plays that won’t get written now, all those dances never to be danced.
I’m mad. I’m fuckin’ mad. I keep screaming inside ‘why are they letting us die? Why is no one helping us?’ And here’s the truth, here’s the answer: they just don’t like us.’

1,121 people on the Disability Clothesline page. A group of service providers working on the Zero Tolerance project for NDS, looking at abuse in residential care facilities. Some dedicated advocates in disabled persons’ organisations, some police who recognise the issues. And that is it – the sum total of those who haven’t turned a blind eye to atrocities that happen in our country every day.

We need to get mad. We need to get fuckin’ mad. And we need to do it before one more man or woman or child with disability dies in this country.

Thursday, August 21, 2014

The Spaces In Between

Draw a circle, I said. It was in one of those classrooms where many people drew circles and talked about things like personal space and public and private behaviours and how to make a cup of tea.

He dutifully drew a circle.

Now draw another circle around it, I told him. He did, and I filled in the gaps, drawing more circles – family, friends, paid support, others. That’s what we were taught to do, to help people understand their boundaries. Paid support workers won’t hug you, but they will take you to your day programme. Friends and family live in the same circle, and they will hug you as much as you want.

He looked at me. ‘Why are they in circles?’

That’s the question that keeps coming up. Who else in the world has areas firmly delineated by ‘professional boundaries’ when it comes to your day to day life? How can you compartmentalise your whole life into little circles?

There’s a show on television at the moment called ‘Dream House’. It’s a reality television series about three young people who are living in a group home – it’s been roundly criticised by the disability sector and has divided much of the disability community.

The housemates are young and presentable and capable people with an intellectual disability or autism. They are being supported by ‘buddies’, mostly TAFE students who are volunteering their support to the project. And there, again, the issue of ‘boundaries’ raised its ugly head – a young man with autism flirts with one of the ‘buddies’, another housemate goes to hug her. She flinches away as if a cockroach has crawled on her, unsure what to do. Laughs off the flirting, but raises it as a ‘behaviour’. A ‘behaviour’, and who can blame the young man? She is busty and pretty and has a lot of mascara on her long eyelashes and a flower in her hair. She is laughing and joking and smiling winningly into his eyes. He is a good looking lad but his affection is articulated in the way that is usual for him, a young man with a disability. Something different, something that she and others aren’t used to, something outside professional boundaries.

Outside the circle.

Those ‘circles of support’ that we keep drawing, over and over again. Drawing as though we’re reinforcing the lines and boundaries, for all of us. You must stay there, as client. She must stay there, as support worker. Here is the disability sector, and this is your world. And out there in that tiny circle to the left is ‘mainstream’ or ‘community’…you can travel there, but you must travel within your clearly delineated boundary, not quite belonging.

Two of the housemates were teasing the third, an attractive young woman who has a disability. They call her ‘darling’ and ‘sweetheart’ and she laughs and calls them ‘ratbags’. And later, a serious-faced staff member sits the men down for a ‘chat’ – you can’t call people darling or sweetheart, that’s what you call your girlfriend, not your housemate. You cannot hug, it is not allowed. And the man who has ‘inappropriately’ hugged another looks wearily at the camera – he has just knocked off work – and says, ‘I can’t help it. It is how I FEEL.’

I stop watching the show as it cuts to the ‘disability specialist’, who solemnly tells the world that people with Down Syndrome are ‘very friendly’. And I wonder how that stereotyping would work for a number of people with disability I know, including myself.

If you have Down Syndrome you are friendly, and ‘always happy’. If you have a disability that is physical or sensory, you are inspirational or a victim – vulnerable, weak and a tragic object of pity. If you speak up, you have a chip on your shoulder – you’re twisted and bitter. You can’t be a sexual being – unless your partner is a pervert or a martyr – and you certainly can’t participate in everyday life like the rest of ‘us’. Clown, victim, inspiration, burden and outcast.

I’m beginning to think that the way that we write and define those same ‘circles of support’ are sometimes the same way we write those stereotypes – with indelible ink, in negative attitudes and long held and preconceived misconceptions. With the same pen that we write policies and procedures designed to fit the best interests of the workers or the agency, the same pen we write both person centred plans and risk management with. You can’t define relationships, no matter how much you want to clarify boundaries. You can’t compartmentalise lives, because we are complex and intricate, all of us.

Six weeks before my mother died, her support worker came to me.

Here’s my phone number, she said. I’m worried about her. I know you’re worried about her, too. It’s against the rules, but here is my phone number. Ring if you need me, and I will pop around. I know you’re two hours away, but I am just around the corner.

I’m in a little trouble at work, she told me. They only let us drive clients nine kilometres away from their homes, but there’s just not a lot around here, so I drive her to Fremantle, and they found out. Sometimes, she confessed, I take her to my house for a coffee. And the gratitude must have been shining in my eyes for my mother, who had spent two years being pushed around shopping centres by disinterested staff.

It was that support worker who told me that she’d fallen – Mum wouldn’t tell anyone else. I’m worried, she said. Nothing I can put my finger on, but she’s just not herself. Hard to wake up, and I went around to check on her after work. I’ll phone later. And it was that call at eight o’clock at night that led me to take my mother to the doctor, then hospital, then a palliative care facility, where she died.

She broke the rules, that support worker. She stepped outside the circle. And for that, I will always be grateful.

I’m no longer interested in those circles, truth be told. I’m interested in the spaces between - in investigating the concept of community and how communities are formed, and how and more importantly why they support people well. Looking at where people have stepped outside the circles to the spaces in between, rupturing the old lines that have been drawn forever, pushing fresh ideas and new ways to include people. Occupying that same mysterious space that is called ‘community’ or ‘mainstream’, resisting the spaces that have been appropriated by ‘services’, investigating the spaces in between.

We need to think outside the circle.

Saturday, August 16, 2014

Shut in, Shut up and Shut Out

NEWS that the UK government is risking ‘systemic violation’ of international human rights law in its treatment of disabled people raises the question – what about us?

Australia is also a signatory to a binding UN convention on the rights of people with disabilities, but our scorecard, whilst not being publicly damned, doesn’t cover us with glory.

We are letting people with disability down. We routinely discriminate against people with disability in the justice system, although we promised to ‘ensure effective justice for persons with disabilities on an equal basis than others’. Ask Marlon Noble how he feels about our compliance with Article 13 – he was locked away for ten years under laws relating to the Mentally Impaired Accused Act, despite never being convicted of a crime. Marlon was ‘freed’ after a campaign for his release, but must now be in a support worker’s ‘line of sight’ for the rest of his life, and must ask permission to leave his home town, Geraldton – something we haven’t imposed on indigenous or other peoples since they were governed and managed under the Flora and Fauna Act in 1967. Ask Marlon how he feels about access to justice.

We promised to make sure that people were free from torture or cruel, inhuman or degrading treatment or punishment, but we still routinely employ forced sterilisations upon people who have the capacity to consent when provided with appropriate decision making support. It’s a clear breach of Article 15 and our international obligations to prevent torture at all costs – forced sterilisation constitutes torture. Is that a matter of conjecture or opinion? No. The UN Special Rapporteur on Torture explicitly prohibits it.

Forced interventions [including involuntary sterilization], often wrongfully justified by theories of incapacity and therapeutic necessity inconsistent with the Convention on the Rights of Persons with Disabilities, are legitimized under national laws, and may enjoy wide public support as being in the alleged “best interest” of the person concerned. Nevertheless, to the extent that they inflict severe pain and suffering, they violate the absolute prohibition of torture and cruel, inhuman and degrading treatment. (Méndez, Juan (UN.Doc A/HRC/22/53)
We told the UN that we’d make sure that people were protected from exploitation, violence and abuse, but there is a clear and acknowledged epidemic of abuse of people with disability in institutional settings. Our response? We’re solving the problems, we say, though National Disability Services, via a program called ‘Zero Tolerance’ - where people with disability are excluded from the process of developing strategies around prevention of neglect and abuse in institutional settings. There is limited national data available, and the national reporting line for abuse and neglect does ‘not cover institutional abuse’ – ring it, and they’ll tell you to complain to the provider. Disability care and support is often tied to housing, so if your complaint is not upheld by your abusers, you’re likely to be out in the street. And they’re the people who are developing the ‘strategies’ to stop it happening – as effective, perhaps, as asking incarcerated paedophiles to develop strategies for child protection. The Government’s response to the issues? The National Disability Strategy doesn’t give us any specific actions around preventing and reducing violence, the National Human Rights Action Plan doesn’t address issues like sterilisation, exploitation, neglect or violence in institutional settings and the National Plan to Reduce Violence against Women and their Children excludes violence against the disabled if they’re in care or service settings.

We’re living in poverty, over a quarter of us. We rate lower than Mexico and the lowest of all OECD nations when it comes to poverty risk – 29 out of 29 countries. Our work and employment rates are shameful, with labour participation at record lows and the Australian Public Service leading the way in low participation rates. We’re breaching Article 19, where we promised to let people live independently and be included in the community – we lock people up in a range of institutional settings and don’t give them options about where or how to live. We still use a discriminatory wage assessment tool, the BSWAT, to justify paying people less than a few dollars an hour in sheltered workshop arrangements. As you go through the list, it becomes evident that Australia is doing more than ‘sleepwalking towards the status of a systemic violator’ of human rights – we are galloping towards it. Faster and faster. Despite the National Disability Insurance Scheme and decades of work by disability advocates.

The United Nations has the power to launch an inquiry if it receives ‘reliable information’ that violations have been committed by a country signed up to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and its optional protocol.

We don’t want to be locked up any more. Shut in, shut up, shut out. Perhaps it IS time to do what the UK disability movement is doing - stopping the navel gazing and asking the international community to step in.

Wednesday, August 13, 2014

If Only Everyone Was George Takei

George Takei. If you’re not on his Facebook page, you need to be. George is witty, thoughtful and passionate – especially about human rights issues. George didn’t come out til he was an older guy, but his work in the gay rights movement has been outstanding.

As of today, George Takei’s Facebook page has 7,425,539 likes.

And today I liked him even more.

A week ago, Takei shared this meme. Unfortunately, I missed it.

Today he posted this incredibly thoughtful apology.

‘I’ve just come back from an extended trip to England, and I came home to a large number of fan emails concerning a meme I shared more than a week ago. In that meme, a woman in a wheelchair was standing up to reach for a bottle of liquor in the store, and the caption said something about a miracle in the alcohol aisle. To this I added a quip about her being touched by the holy spirits.

I did not expect the level of offense this meme caused. I had naturally just thought of those movies where the evangelical preacher miraculously cures someone who was disabled. What I’d never really considered before so many fans wrote in is how that portrayal of disabled persons is filled with ignorance and prejudice—two things I never want to promote, even inadvertently.

Now, before all of you go and start defending my right to post what I want, I want first to thank the many fans who wrote in with the hopes of educating me on the question of “ableist” bias. While I did not ever mean to suggest by sharing the meme that all people in wheelchairs cannot walk, or that they don’t need them despite the fact that they can stand on their own from time to time, I have taken the fan mail and criticism to heart.

After I’d posted the meme, I noted in the comments an inordinate amount of very uncivil behavior on the part of many fans, including both those who demanded I take it down and those who said I should leave it up. I also received a good deal of email IN CAPITAL LETTERS asking me if I would feel the same way if someone called me FAG or a JAP. Now, I took down the meme from my timeline shortly after it went up, but I admit I was decidedly irked by the tenor of some of those criticizing me. In that moment, I posted a follow up telling fans that perhaps they should “take it down—a notch” which, in retrospect, was not the most sensitive response.

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community. I appreciate those who took the time to write in. I wish I’d had the chance to respond sooner, but until today I was not able to go through all the mail I’d received.

So to those who were hurt by my posts on this issue, I ask you please to accept this apology. To those who think I shouldn’t have to apologize, I want to remind you that I get to decide what I apologize for, so there’s no need to come to my defense.

Very well then, carry on, friends. Carry on.’

And as of this minute, 45,487 have liked the post, and 1,235 people have shared it. But…then there are the comments.

Let me clarify something. This woman in the picture could well have been me. I mean, it would be me with a far trimmer rear end, a new hairstyle and a decidedly hospital grade wheelchair. But I can stand. I can walk. I didn’t break my neck. Nothing is paralysed.

I have a condition called limb girdle muscular dystrophy, and it could well have been me in the bottle shop. For a start, the woman is reaching for the stuff on the top shelf. Yeah, baby.

But the comments – there are comments beneath Takei’s post, despite his considered response, that make me understand WHY I drink. Comments like this.

Wow!!!! Get a life folks!!! I thought it was pretty goddamn funny George!!

Butthurt (repeat this witty comment x 1000 times)

Seriously ! it seems no matter what you do someone somewhere will take offence, and to them I say GET OVER IT! for god sake realize humor is not always kind, yet you laugh and i don't think it was in very bad taste, there are many frauds out there sitting in wheel chairs, I have a great , but sad story that emphasizes that very thing, George Takei you don't need to apologize to anyone ! And I don't have the time to retell that story... About a one legged black woman and her wheel chair in Vegas.

It must get tiring having to live politically correct. To the people "educating" George, kiss off and get a life. Half the disabled people I know are full if shit, just lazy and want pills. There, now give me crap cause I dont care.

And then there was this.

(Picture of a hamster, with the words ‘Ableism? Cic? I laugh at your made up words. You betas, manginas, thuglovers and alphacock carousel riding feminazis are hilarious’

About five percent of the comments were from people who thought that Takei was right to apologise, and thanked him for doing so. A percentage of others just loved Takei, but well over sixty percent of people thought those disabled people just needed to lighten up. They didn’t find it offensive at all, and didn’t think anyone else had the right to be offended.

Takei, as a gay man (and a man who had Japanese parents) understands microaggressions, the type I wrote about a few months ago here. But he's not disabled. Takei looked at this meme, like the rest of the world did, and he laughed. If I looked at it, I would have seen it differently.

This is what I would have seen. This is what I would have remembered.

I would have remembered every time that someone jumped when I moved my foot or stood or leaned far over and looked at me, wondering, speculating. Because all people in wheelchairs have a spinal cord injury…if you can walk, why do you use a wheelchair? Are you a fraud?

I would have thought about the conference I co presented at last month, and the incredible upset and hurt that I felt when a colleague told me that his co-worker had asked ‘Can she do a standing transfer?’ The equivalent of me asking of an able bodied male presenter – ‘Is he circumcised?’ All of a sudden, you are reduced to being not regarded as a professional, nor an advocate, nor a speaker – you are reduced to a disability, a body in a chair.

I would have remembered that it is getting harder for me to stand, and that when I get up from the ground, I need to straighten my legs and ‘ladder’ my hands up my thighs to get up. And that sometime in the future, I will not be able to stand up at all.

I would have thought about the lack of understanding and lack of caring that led to me losing my job, because there was not a place for me to piss at my workplace that was close to my office.

I would have remembered the daily speculation, the lack of understanding, the perception that people with disability are ‘slackers and slouchers’ who do not work and who bludge off the government. That’s the message sent by the meme. It’s an insidious one, one that is creeping into our media every day and into the minds and hearts of the masses. In May of this year, this headline hit the Daily Telegraph –

(A newspaper headline ‘NSW DSP Recipients: 270,415 Nations War Wounded: 226,016 – Slackers and Slouch Hats)

And I would have thought about the number of disabled friends who have told me that it will take 'one more thing' - one more check to see if you are 'still disabled', one more fight, one more slur, one more hurtful word - for them to enact their 'exit plan'.

It wears you down, eventually, that ableism. I wonder, too, if the experiences of other marginalised groups aren’t so different. The speculation about your sex life, the perception that a child should have a mother and a father, the questions to an Australian person of Asian descent about ‘where you come from – no, where you ACTUALLY come from?’

It’s not about political correctness, it is about thoughtfulness, and it is about respect.

If only everyone was George Takei.

Wednesday, August 6, 2014

Thirty Three Times in Thirty Four Days

Tomorrow, a man named Peter Edward Kasatchkow will be sentenced for 33 counts of sexual assault against five women with disability.

Mr Kasatchkow was a taxi driver, and as such, held a position of trust. He routinely drove people with disability in his Maxi Taxi to and from work or other places.

Most of the people Kasatchkow transported had disabilities that severely impacted upon their lives. The 29 year old woman who caught his taxi on February 3 was no exception. She has cerebral palsy, uses an electric wheelchair and has great difficulty speaking. When Kasatchkow drove her to a racecourse car park at Ascot and sexually assaulted her, he probably never dreamed that she would be able to alert her support workers to the abuse, much less ask them to record his registration number.

In WA, only police are able to access taxi security camera footage, which is used to provide evidence in court when taxi drivers have been assaulted. It is not monitored in any other way, and police will only access the footage if a crime is reported. The footage is routinely deleted at the beginning of each year.

Police almost certainly did not expect what they found on the security cameras. During the first 34 days in 2014, the cameras had caught Kasatchkow raping or indecently assaulting five disabled women – thirty three times.

On April 14, Peter Edward Kasatchkow, 58, of Dianella, was charged with 29 counts of indecently dealing with an incapable person, one count of aggravated indecent assault and three counts of aggravated sexual penetration without consent. He pleaded guilty to all charges.

If it had not been for the fact that his last victim had been both brave and articulate and had communicated the abuse to the authorities, there is no doubt that Perth women with disability would continue to be raped on a daily basis. Some people cannot speak, you see. And nobody would ever know.

This is what keeps me awake at night – how many more victims are there?

The security camera started rolling on January 1, and by February 3 Kasatchkow had raped or indecently assaulted thirty three times. It’s highly unlikely that Kasatchkow, who had worked for the Department of Education and who had transported people to and from school and disability service settings for years, had suddenly developed a New Year’s resolution to rape a passenger a day. Predators generally have a history of predatory behaviour.

Sadly, this story is nothing new. The Royal Commission into Institutional Responses to Child Sexual Abuse is currently hearing evidence about the St Ann’s Special School case in Adelaide. Bus driver Brian Perkins abused up to thirty children, but the police and school authorities did not tell all the parents whose children had come into contact with Perkins. And for ten years, those children developed ‘behavioural problems’ – one boy sobbed inconsolably when he saw Santa (Perkins had a beard), another family resorted to sleeping in the garden shed because their child screamed himself hoarse every night after the lights were out.

The abuse – and the fact that Perkins had been caught with naked photographs of many schoolchildren, but was never convicted after escaping bail – was only discovered and raised publicly after a chance encounter between parents.

The statistics are telling. Women with Disabilities Australia say that women with disabilities are denied their right to freedom from exploitation, violence and abuse – they experience alarmingly high rates of all forms of violence and abuse from a range of perpetrators yet remain excluded from violence prevention legislation, policies, services and supports. They continue to be assaulted, raped and abused at a rate of at least two times greater than other women. Both men and women with disability are far more likely to be abused than their able bodied counterparts, and people with intellectual disability are 10.7% more likely to be victims of sexual assault.

You’d expect a public and immediate response from the taxi and transport industries about the safety of vulnerable people. But in the wake of the Kasatchkow scandal, there has been nothing but a resounding silence. The last victim’s mother reports that she received no contact or offer of support from the taxi company, despite the fact that her daughter is too frightened to use wheelchair taxis and is effectively trapped at home – the cost of hiring a wheelchair accessible van is about $1000 a week. Neither did she receive a call from the Taxi Council, who rather defensively say that they acted appropriately by immediately suspending Kasatchkow’s license. They’ve also implemented a taxi driver demerit system – if you have a car crash or carry out a criminal activity, you can now have demerit points accumulated against you. There are no plans to monitor the security cameras, nor make changes to the system in other ways, they say – they don’t have the resources.

On Friday, a number of Western Australians with disability and their families will be present to bear witness to the sentencing of Peter Edward Kasatchkow. But how many of them will be able to get inside? When I phoned the District Court to ask about the accessibility of the courtrooms, the staff member told me that there was only one wheelchair accessible space in each court room. Despite the fact that the District Court building was constructed only five years ago.

All five victims use a wheelchair.

We people with disability are routinely denied access to justice, education, transport, services, facilities and employment. On Friday, I will join others who are thinking of the victims. Inside and outside the courtroom.

Saturday, July 26, 2014

You Gonna Be the One that Pays Me?

I wrote you a song.

It's for all you 'token people'. Not just people with disability, but anyone who has ever been asked to 'be part of a working group/focus group/committee' to provide 'a voice for your people'.

That's us. The guys sitting around the table, day after day, passionately advocating on behalf of our fellow disabled people, indigenous people, people from CALD backgrounds, LGBTI communities. Our presence is valued, they assure us, and we are always profusely thanked for our passionate words and lived experience and valuable input.

Then why do they insist on trying to pay us with movie tickets and taxi vouchers and left over food?

You sit around the table with a bunch of people who are being paid by the hour. The service providers and the executives and the junior who just started last week and who is really keen to learn. And you spend the next three hours talking about the legislation and the service standards and giving your recommendations and advice which you have garnered from years and years of experience. Then they offer you the stale sandwiches and floppy fruit platter as you walk out the door.

So I wrote you a song, with apologies to Liam and Noel, and with thanks to the fabulous Kelly Cox, who inspired me to write it.

Crank up the volume, friends. And next time, ask them if you can change the meeting date to a Saturday.

You Going To Be The One Who Pays Me?

(to the tune of 'Wonderwall)

Today is gonna be the day

That the meeting at that place is on

By now I should’ve somehow

Realised getting paid aint on

I can get all those taxi vouchers

For my work today but no cash now

Back beat, the word is on the street

That disabled people have a voice

I’m sure you’ve heard it all before

That it’s all about control and choice

I don’t believe that anybody likes

To just be paid in taxi vouchers

And all the working groups and all the meetings

You go for free but it’s okay, you’re eating

And at the end of the day

Some guy he says to you

You can take the leftovers…

Because maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

Today was gonna be the day

And I’m gonna throw it back to you

By now I should've somehow

Realized what I’m going to do

I’m going to call a meeting, baby

On a Saturday

Will you come now?

And all the stale sandwiches and the fruit platters

I need to pay my bills not just get fatter

How hard is it to understand that we need payment too?

For our expertise…

I said maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

I said maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

I said maybe

You’re going to be the one that pays me

You’re going to be the one that pays me

You’re going to be the one that pays me