Showing posts from 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.

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 an…

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…

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…

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,, the Australian Federation of Disability Organisations. So is the former Disability Discrimination Commissioner, Graeme In…


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…

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 p…

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 hal…

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…

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 abo…

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 …

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…

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…

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 recommen…