Friday, October 30, 2015

Do You Stand To Wipe?

Do you stand to wipe?

I blinked a little. Out of the blue, my charismatic 25 year old son was asking my friend this question, with all the charm that he could muster. The friend blushed. Of course not, she said, and my son carefully explained that he had asked hundreds of people this question, and the results were unexpected – almost half the group sat, the other half stood. And a few lonely souls put their foot on the toilet seat, meeting the others half way.

We’re not comfortable with sharing our personal habits, and it’s only people like my lad who can (almost) get away with asking questions like this. Curious about how this subject arose, I asked why he’d thought of conducting this slightly odd research – he’d told his friends he had fallen over in the toilet whilst drunk, in the act of wiping. But why were you standing? one friend asked. And thus the Great Standing or Sitting Debate was born.

It’s an amusing topic. Last night, I sat with some friends around a table and told them this story, to their great delight. The three wheelchair users, unsurprisingly, were sitters – only one young man confessed to his standing status. The conversation that ensued was hilarious – we talked about starting a support group for Standers, designed a logo and laughed about terms like ‘bowel divergent’.

And then something happened.

A young waitress came over to clean away our plates, and I asked her if she’d mind answering a personal question. Do you sit or stand to wipe? I asked. She blushed, stammered, and eventually said that this was far too personal, she did not want to disclose that information and actually, it was rude to ask someone very private information. She had her head down as she walked away.

I agree.

It was an interesting social experiment, because this what happens to disabled people every single day.

It begins with the inevitable question – how did you end up in a wheelchair? But the personal questions don’t stop there. We are often grilled over our private medical details, our sex lives, the intimate secrets which most people only reveal to their close friends, relatives or medical practitioners. Our stories are commodified so often for the use of others – generally for inspiration or tragedy porn – that the type of dignity and respect that others expect is unavailable to us.

Consider this.

One day, I delivered a workshop to a group of service providers. One man asked my friend, without me present, if I could ‘do a standing transfer’. I remarked that it was unusual to ask how the presenter went to the toilet.

One weekend, I went on a respite weekend with a group of carers. Within the first three hours, I had been asked how I had sex, why I used a wheelchair and what my life expectancy was. I had met only one of the women before.

One night, after telling another woman that I was married with children, I was asked if I had given birth vaginally, if ‘the father is still with me’ and if I’d ‘stopped having sex after becoming disabled’.

I wonder if the commodification of our stories – the type the able bodied population expects, the narrative about overcoming great odds, the stories of tragedy and inspiration, the story of the power of the human spirit to overcome – has led to the perception that we must be willing to reveal every single personal detail to casual passers-by. That our stories automatically belong to the able-bodied stranger. I wonder whether our willingness to share our experiences to educate and spread awareness have backfired on us, making us public property. And I wonder what kind of stories we should be sharing – or if we should be sharing our stories at all – to change that circumstance.

That young woman’s blush said it all. It was an inappropriate question to ask, because she was a stranger. Nobody has the right to ask you those questions, and nobody should be compelled to answer. Whether you’re able bodied, or disabled.

The irony is this. I have been asked how I have sex, when I will die, how I gave birth. But as a wheelchair user, nobody has ever asked me whether I sit or stand to wipe.

Monday, October 19, 2015

Virtually Non Existent.

I don’t exist.

Neither do many of my friends – specifically, those with disabilities.

I discovered this recently when playing the Sims, a ‘life simulation video game series’, developed by EA Maxis and published by Electronic Arts. It’s one of the best selling video games of all times – it has sold more than 200 million copies world wide.
There are fat Sims, black Sims, Sims with purple hair. You can tweak your Sim character until he is a morbidly obese black guy with a bad ass taste in goth fashion. You can add traits and characteristics to make your Sim charismatic, a good kisser, lucky – but you will never see one type of Sim in the land of the Sims.

Yep, that’s us. People with disability.

There are no blind Sims. There are no Deaf Sims. There are no wheelchair using Sims, and it is unlikely that you will be able to introduce learning disabilities or neurodiversity into the Sims’ basic makeup. When you google ‘disabled Sim’, YouTube will tell you all about how to unlock your phone with a PUK code. We just don’t exist.

Game designer Will Wright was inspired to create a ‘virtual doll house’, and that’s just what he did. He adapted his life experience from his own experience – a house on a street, with people who live in a certain way. No prayer mats, no ramps and certainly no disabled people. We’re presumably living in the institution or working at the sheltered workshop down the street.

But imagine how much richer, how much better, the Sims would be if there was a disability expansion pack. All of a sudden, your Sim can only get a job in a sheltered workshop if he has a learning disability. He has additional challenges – sometimes he needs to sleep in his electric wheelchair when his disability support worker doesn’t turn up. His budget just doesn’t stretch far enough, and his social circle is comprised of only people like him. He can’t go to other people’s parties if they have a staircase, or if their toilet is not accessible. He has to buy additional ‘household items’ in order to live – a guide dog, a cane, a wheelchair, a hoist.

Imagine, too, that this was a feature of a usual game – where your Sim could acquire a disability at any moment by breaking his or her neck with a fall downstairs. Off to hospital and into a massive learning experience. Imagine if he experienced a mental illness, and suddenly became schizophrenic. How would his family cope with no support? Would he still live at home? What would he do? How would he live?

Imagine that your Sim had a baby and that it was diagnosed with a disability. Or imagine that you could be tested for disability – would you be like the 90% of parents who abort babies with Down syndrome? What would you do?

We don’t exist. We’re invisible. But imagine, just imagine, if we were included, not excluded, from games in ways that offered other people insight into our ‘worlds’ – by using a virtual platform.


Monday, October 5, 2015

They Built A Wooden Coffin.

She locked him in a cage, in the corner, because he wouldn’t do what she wanted him to do.

He tied her to the bed so that she wouldn’t leave the room. Every night, for two years.

They built a wooden coffin, with a padlock, and soundproofed it with egg cartons so they wouldn’t hear them scream.

By anybody’s standards, these are acts of torture. The kinds of torture that we read about in the tabloid rags, titled with sensationalist headlines that scream, ‘He locked me in a coffin!’

But in Australia, you won’t read those headlines. Why? Because we are disabled, and torture is de rigueur. It’s par for the course. If you won’t comply, if you don’t fit in, into the box you go. And aside from a slight flurry of outrage by disability rights activists, the rest of the world will make a moue of distaste – ah, that really should not happen, should it? – and will carry on, business as usual.

The reactions are appalling. Only yesterday, the news headlines told us that a wooden box had been constructed for the sole purpose of restraining disabled clients. In a domestic relationship, the perpetrators of that act would have been hauled off to the police and interviewed. The victim or victims would be interviewed. But this is disability, where torture is an accepted practice. So what has happened? Well, practically nothing. We're talking about 'investigations' and the organisation is hiring PR firms and writing trite press releases about 'unauthorised structures' and telling us that actually, Autistic children and adults might like to be locked in wooden coffins. It's the Josef Fritzl equivalent of a press release that says that the family who plays together stays together, and that dungeon basements are quite cosy, really.

Let’s consider the facts.
The box was constructed by ASPECT staff last year and intended as a ‘calming device’, to put ‘diffficult’ clients into the box to calm them down.

The box was nailed to the windowsill, to stop it from falling over.

The box was intended to be soundproofed, with egg cartons.

The box was fitted with a metal latch, to enable it to be locked.

Within hours of the organisation being notified that a whistleblower had told authorities about the box, the whistleblower was fired.

Staff were led to be believe that it was an ‘approved practice’.

The two staff members who built the box were given the choice to resign and thanked for their service.

The clients of the service – the same people who were intended to be locked in the box – were made to paint the box with colourful designs.

It’s just the latest in a recount of thousands of cases of abuse against people with disability. Earlier this year, a government school purpose built a metal cage in a classroom for the restraint of a ten year old Autistic boy. It was painted blue.

Boxes and cages. In any other place, there would be outrage, investigations, prosecutions. Instead, there is silence and hiring of PR firms to kick off the damage control process, in the sure knowledge that in the disability sector, nobody will ever be held accountable.

In Australia, we torture people with disability every single day. In health care settings, in education settings, in disability settings. We force them into compliance based behavioural intervention, and say that it is ‘for their own good’. We tie them to hospital beds and restrain them with medication. We cut out their reproductive organs and force them, coerce them, abuse them in a hundred, thousand ways.

This cannot continue – yet it does. Australia has an abhorrent human rights record when it comes to the treatment of people with disability, and it is not getting better. We need a Royal Commission into the abuses against people with disability in Australia, and we need it now. We need strong legislation that places accountability where it belongs, and we need an independent, statutory, national body to investigate and act upon violence, neglect and abuse.

He locked him in a cage.

He tied her to a bed.

They built them a wooden coffin.

Help us stop this from happening. Urge your local member of parliament to take action and ‪#‎endtheviolence‬ by clicking this link.