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.