Monday, June 9, 2014

Shut out, Shut in, Shut up.

In 2009, the Federal Government commissioned a report into disability in Australia. It was called 'Shut Out', and was prepared by the National People with Disabilities and Carer Council.

The report described how Australians with disability were treated - not as second, but as third class citizens. It talked about a broken and fragmented disability services system that failed people with disability and their families. And it made a series of findings which were slated to assist with the implementation of the National Disability Strategy.

Listen to this quote from Shut Out - 'Persons with disability are subject to multiple and aggravated forms of human rights violations, including the neglect of their most basic survival related needs. These human rights violations do not only occur in far off places that lack enlightened legislation and policies, or the resources needed to meet basic needs. They occur every day, in every region, of every state and territory in Australia. Virtually every Australian with disability encounters human rights violations at some points in their lives, and very many experience it every day of their lives. In 2009, in one of the most enlightened and wealthiest nations in the world, it is possible for persons with disability to die of starvation in specialist disability services, and to have life-sustaining medical treatments denied or withdrawn in health services.'

The National Disability Strategy was developed, and a blueprint for a National Disability Insurance Scheme followed shortly thereafter. For the first time in decades, people with disability and their families had hope.

We haven't lost that hope just yet, but it is fading fast.

Imagine being on the beaches at Gallipoli. That is what it feels like for many people with disability and their families. You're crawling through the wreckage of broken bodies and lives, scrambling for shelter, ducking for cover. Crawling so fast that you don't have time to look left or right at the others who are scrambling with you. You are under fire and all you can hear is the hail of bullets and the blood roaring in your ears.

That is what it feels like to live a life where you are in crisis, day after day.

You are dealing with your disability or your lack of support or your employment or unemployment or a school or your family or your lack of equipment or your barriers to *insert anything here* and sometimes you are dealing with all of those things at once.

And just as you think you have reached a trench where you can breathe for a moment, another missile falls.

Bang. There's a cut to the Disability Support Pension.

Bang. The National People with Disability and Carers Council is sacked.

Bang. The ABC's disability website, Ramp Up, has been abolished.

Bang. The position of the Disability Discrimination Commissioner has been abolished.

Do I sound angry? Damn right I am angry. I care about the others who are scrambling through the trenches and I wonder how Australia's most disadvantaged citizens came to be under fire.

Shut out, shut in, shut up. We're locked in institutions without having committed a crime. We're unable to access basic medical and health services. We have our voices taken away from us. That's despite the popularity of ABC's Ramp Up. That's despite the fact that 37 percent of discrimination complaints relate to disability.


We are scrambling for safety, all of us, uphill, occasionally glancing sideways to meet another terrified set of eyes. Make no mistake, this is a crisis. And it is deeply personal for all of us.

The missiles fall softly.

Last month, I lost my job because there was nowhere for me to piss. Bang.

Last year, a woman starved her daughter to death because she and her husband had lost hope. Bang.

Last week, a man told me he had an 'exit plan' if his supports were cut. Bang.

Shut out, shut in, shut up.

We haven't lost hope yet. There are many of us down here in the trenches, and if we can only catch our breath for long enough, we can crawl to the same spot and form a strategy of our own. It's hard to do that in an environment of every-man-for-himself, but the time has come for us to focus our attention. We need to catch the eye of each desperately scrambling individual and motion for them to join us in one safe area. And once there, we need to plan what to do next.

The missiles fall softly. But perhaps we have missiles of our own.

Time to find out.

Friday, June 6, 2014

Defined by Disability

I used to work with a woman who was a nose picker. She was great.

And then there was the guy I once married. A pornographer and a masturbator. Really nice guy.

My kid, he likes to steal and tear headbands off babies in shops. Sometimes he hurts himself. Will you accept his enrolment now?

I have never heard anyone make these statements about the people they know. But that is probably because I am not talking about people with disability.

Here’s a meme that is currently floating around. It’s developed with the ‘permission of the parents’ to tell the world that T (who I have de identified) must remain locked up in an institution, and why the institution must not close.

T, the meme says, displays ‘high risk behaviours’. She takes things from shops, grabs babies’ headbands and takes things from shops.

There are, of course, no babies in the institution.

T does things, like others do things. But since when did we describe people by what they do?

Why, we started doing that when we found out that they had a disability.

That institution, one of many. They’re full of absconders, elopers, smearers, biters, fighters, bedwetters, runners. The language of difference tells us that we must not, in any circumstances, let these people out. They are dangerous – they must be locked up for their own good. They are different, and may never be trained to be less different. They are the ‘other’.

There are no babies in the institution, and it is unlikely that T will learn that babies are fragile, small creatures who must be loved and protected. Most people learn this by being around babies, watching them, spending time with them and loving them. T will probably never learn to see the baby, not the headband. She doesn’t have the opportunity to learn those things, because she has been ‘put away’ in a snug, safe place, without danger or fear, without choice and control or spontaneous walks in a park or visits to a corner store. A place without your own pet, a place where you wake at the same time and sleep and eat when you are told. A place without babies.

Last week I presented a workshop to a group of service providers. It was a successful workshop and we received great feedback. And then a colleague told me that another colleague who attended the workshop had asked him if I could ‘do a standing transfer’.

I thought about T, then, and why her personal traits are so relevant to the rest of the world. Would it be acceptable to ask my colleague if the workshop presenter was circumcised? Did he know whether he stood or squatted to wipe? Why is it important that the world knows that T might have ‘self-injurious behaviours’?

To define her difference. To justify our decision to lock her away from the world forever. We are defined by our disabilities rather than our abilities – marked forever by our ‘behaviours’.

There goes T, the thief, the perpetrator of terrible acts against babies and headbands. T, who cannot be let out, cannot be let in, cannot be with. T, who is 'other'.

I look at this photograph of T and I understand that there are people who wish her to be locked away ‘for her own good’. I know that these people mean well, that they want their family member to be safe and looked after and secure. I know that the institution, with its ‘one stop shop’ of medical services that will attend or be visited daily, seems like the most desirable environment for T, who has never been allowed to experience anything else. Let alone choose her own doctor.

And then I wonder why, with all these fantastic services and supports that are available to T…nobody cared enough about her to save her teeth.