Wednesday, January 29, 2014

I saw a kangaroo

I remember, years ago, walking into the bush on a Scout camp and coming face to face with a startled kangaroo.

It turned its head and regarded me, and I looked back. I held my breath.

One of those frozen moments in time. I saw that its eyelashes were impossibly long, that the sun caught its fur and struck reddish embers in it. It kept its bright eye on me, and the long muscles in its thigh tensed, ready to bound.

A minute, two minutes, five – and eventually it turned away and hopped casually into the bush. I went back to camp, beaming.

Years later, I remembered this moment when a small Scout walked out of the bush, face lit up, eyes shining.

‘I saw a kangaroo,’ he said.

Sunday, January 26, 2014

In my Shoes

Walk a mile in my shoes, they say.

Many years ago, when I still walked, I went to a shop to buy a pair of Converse sneakers.

"Would you like these ones, or the pre-grunged version?" asked the shop girl helpfully. Pre-grunged? She pulled out a pair of Converse and sure enough, they looked grubby. Fake dirt, you see - the Kurt Cobain Converse line. I was relieved to see that they didn't have any fake blood spatter. Pre-grunged, grubby - and an outrageous ten dollars more.

"I'll grunge them up soon enough," I told her cheerfully, and paid for my (non Cobain) Converse. Grunge them up I did, through paddocks and beaches and miles of bitumen and life.

But then I started using a wheelchair.

I've been wearing my battered Converse ever since. As a mark of pride, because my world, constricted by access barriers, has now narrowed. My Connies said, I thought - 'Look, I have walked 500 miles. I have hiked and run and walked and skipped. I have *lived*.'

Conversely, (ha! see what I did there?) I also own a pair of spotlessly clean hiking shoes. They cost me over two hundred dollars - I knew that walking well was getting harder, but thought 'I have a few more years hiking in me.' An optimistic miscalculation, as it turns out - the nearly new shoes have sat in the corner since, and I glare at them balefully from time to time.

I can read the above and grin that I'm so predictably human. Regret for that which is now lost, desire to 'not appear different', anger and outrage that it is harder than it should be. A faint sense of advantage over lifelong wheelchair users who have never felt sand between their toes or crawled through a cave or swung through the air or jumped out of a plane.

But yesterday, for the first time since using a wheelchair, I donned my hiking shoes - for a Scouting activity, and mostly because I did not have another pair of shoes to wear. And after scrambling through sand and dust and bits of left over Australia Day breakfast all morning, I noticed that my hiking shoes were still pristine - but my wheels were covered in dust and dirt and food and bits of bird shit. There was even a tiny feather attached to my Freewheel.

All of a sudden, I thought, 'Hey, I should wear these shoes more often.'

Nothing's changed, really. My chair is battered and broken and falling apart after two years of hard living in the Wheatbelt. I didn't need that to be pre-grunged, either.

I've spent the last few years looking at the pristine shoes of other wheelchair users, when I should have been looking at their wheels. Strikes me that this is what most people do - in order to walk a mile in someone's shoes, you need to look a little bit harder. Maybe it's time for a new pair of Converse.

Thursday, January 23, 2014

Our Promise to You - Apartheid

I went to McDonalds this morning. I could have gone to an upmarket restaurant – but Maccas is cheap, convenient, and I really like their bacon and egg McMuffins.

So I went to the door and there was a prominent sign on it – ‘Sorry. If you use a wheelchair, we can’t serve you – unless you come in with another paying guest.’


I rang McDonalds to ask what the hell they were talking about.

The receptionist wasn’t even apologetic. ‘Didn’t you read the sign?’ she said.

‘I’m sure it’s a mistake,’ I answered timidly. ‘You weren’t actually saying that I couldn’t eat here unless I was here with another person, were you? Because I don’t have a friend with me today – and besides, most of my friends don’t like Maccas.’

‘Yes, that is what we are saying,’ the receptionist said. ‘We keep our prices down because we have limited staff – and when you come in, one of our staff members will have to move a chair. You will have to bring a paying guest with you to move your chair, or you can’t eat here.’

‘But what about prams?’ I asked humbly. ‘Don’t they also require a bit of moving chairs around? ‘

The receptionist laughed. ‘People with prams don’t have special needs,’ she said. ‘You do. So we’ve made this rule around special needs…but I’m sure you’ll be able to get a meal at the fancy restaurant down the road.’

Would you be outraged if this happened to you?

Maccas have never refused to serve me a McMuffin. In fact, I bought one this morning. I’ve never seen a sign on their door saying ‘No Wheelchairs’ or ‘No Black People’ or observed any other discriminatory behaviour from them. Maccas are an equal opportunity fast food chain, who fatten their clientele equitably.

Not so FlyScoot.

You might not know FlyScoot. They’re new, a budget airline to compete with Jetstar and Virgin and Tiger. But this morning, they refused to serve me a bacon and egg McMuffin.

From their website –

Can I travel if I have a disability?

You must be able to travel independently, i.e. be able to board, deplane, toilet, feed, move about the aircraft and communicate with the crew with respect to safety instructions unassisted. If you are unable to do so, you will need an escort/carer to travel with and assist you throughout your flight as Scoot does not have the systems, staff or facilities to assume responsibility for such assistance. Please note that, should you need an accompanying guest, they must be included in the same booking as yours; our call centre can help facilitate this.

I rang them this morning to try and book a trip to Singapore. I have never been refused a flight on the basis that I use a wheelchair. But I’m unable to do so – despite the fact that I can work, camp, eat, parent, live independently – in fact, I have hardly any support needs other than requiring a wheelchair for mobility.

The call centre girl said clearly, ‘If you use a wheelchair, you will not be able to fly with us, unless you bring a carer.’ In other words, get your bacon and egg McMuffin somewhere else, bitch.

On their website, they say they've 'standardised and simplified their processes' to keep fares low and that they haven't 'forgotten people with special needs'. That's their promise to you - they haven't forgotten us. No, they've actively discriminated against us.

In 2008, a 78 year old advocate named Sheila King launched a Disability Discrimination Act complaint against Jetstar when she was refused carriage on a flight. The basis for Jetstar’s refusal of service was that there were already two people using wheelchairs travelling on that flight.

Sheila’s complaint was investigated by the Australian Human Rights Commission, and she went to court. Jetstar’s mass of lawyers argued that only two people a day should be able to buy a McMuffin. Sheila lost.

At the time, Disability Discrimination Commissioner Graeme Innes said, ‘While Jetstar's "two wheelchair" policy is also practised by Virgin Blue, and by Tiger, Jetstar's parent airline Qantas, do not have this policy. Nor do Virgin internationally. I know of no other airline in the world flying big jets which does.’

All that’s changed now we have FlyScoot. Instead of pretending we don’t have disability apartheid, the ‘No Blacks’ signs are on the door, loud and proud, for everyone to see.

That’s why I’ll be launching a DDA complaint against them today.

I’ll be asking that they change their discriminatory rules – and I’ll be asking for a payment of $5,000, to donate to a systemic advocacy organisation of my choice. For the sole purpose of making sure that we work to align ourselves with the rest of the world and that we are no longer treated as second class citizens when on the ground or in the air.

Wednesday, January 8, 2014

Choose Life - or the Alternative

'Choose life. Choose a job. Choose a career. Choose a family. Choose a fucking big television, choose washing machines, cars, compact disc players, and electrical tin can openers. Choose good health, low cholesterol and dental insurance. Choose fixed-interest mortgage repayments. Choose a starter home. Choose your friends. Choose leisure wear and matching luggage. Choose a three piece suite on hire purchase in a range of fucking fabrics. Choose DIY and wondering who the fuck you are on a Sunday morning. Choose sitting on that couch watching mind-numbing spirit-crushing game shows, stuffing fucking junk food into your mouth. Choose rotting away at the end of it all, pissing your last in a miserable home, nothing more than an embarrassment to the selfish, fucked-up brats you have spawned to replace yourself. Choose your future. Choose life . . . But why would I want to do a thing like that? I chose not to choose life: I chose something else. And the reasons?' - Trainspotting

The answer, of course, is 'because I use heroin' - you'll know that if you ever watched the movie Trainspotting.

But it could just as easily been 'because I have a disability' - only it's not a choice.

I'm editing a disability magazine called 'Starecase', and working through the policy areas of the National Disability Strategy as inspiration. And watching Trainspotting out of the corner of my eye, which is what made me think of this quote.

I'm struck by the number of things that you might not be able to choose if you have a disability. A job, a career, sometimes a family. A 'fucking big television', or anything on hire purchase, because you don't have a job. Junk food, because you can't afford it. If you're lucky enough to be disabled enough, you might meet the Trainspotting objective of pissing your last in a miserable nursing home - and you don't even need to be old. There are plenty of younger people in nursing homes.

My friend is currently in a fight with his provider over provision of a support worker to take him shopping. The agency argues that he can order meals online - why wouldn't he?

Well, some of us like to CHOOSE the food we eat. We like to smell and touch and make decisions based on what is on special, or even sometimes go to more than two stores.

There's a big buzz-phrase in the disability sector, 'choice and control'. It's often used in a game we call 'wank word bingo' - along with phrases like 'flexible and responsive'. But looking at the policy areas of the Strategy - areas around accessible communities, justice, jobs and money, support, education and health - I realise just how disadvantaged many people with disability are when it comes to choice.

Choose life. Hell, we'd like to. And the reasons we can't?

I'm not quite sure.

Monday, January 6, 2014

What Katy Did - To All Of Us

I have been sick in bed for some days now.

I fell asleep and woke in a sweat, and it had nothing to do with the forty degree heat.

Let me explain.

I am forty six years old, and a casualty of the years of death-by-Enid-Blyton - Secret Seven and the Famous Five, the Folk of the Far Away Tree, a bunch of stories created in the sixties and seventies that no doubt shaped my viewpoint and imagination into whatever it is today.

But until I slept, I had almost forgotten this book - What Katy Did.

I don't think I dreamed - I just remembered. Katy, inspired by Cousin Helen - poor brave Cousin Helen - suffering patiently through three books. Katy the invalid. Katy, who I had not realised until now, was disabled.

Disclaimer: What Katy Did was written in 1872. It was full of outdated ideas about disability and sickness and bravery and women's place in society.

Why, then, was I reading it? Because in the 1970s, it was badged as a 'children's classic'.

I think I may just have found the secret of why society's attitudes towards disabled people are so negative and perverse. Check out these gems; Aunt Helen, Katy's crippled aunt, comes to visit.

'Cousin Helen coming! It seemed as strange as if Queen Victoria, gold crown and all, had invited herself to tea. Or as if some character out of a book, Robinson Crusoe, say, or "Amy Herbert," had driven up with a trunk and announced the intention of spending a week. For to the imaginations of the children, Cousin Helen was as interesting and unreal as anybody in the Fairy Tales: Cinderella, or Blue-Beard, or dear Red Riding-Hood herself. Only there was a sort of mixture of Sunday-school book in their idea of her, for Cousin Helen was very, very good.

None of them had ever seen her. Philly said he was sure she hadn't any legs, because she never went away from home, and lay on a sofa all the time. But the rest knew that this was because Cousin Helen was ill. Papa always went to visit her twice a year, and he liked to talk to the children about her, and tell how sweet and patient she was, and what a pretty room she lived in. Katy and Clover had "played Cousin Helen" so long, that now they were frightened as well as glad at the idea of seeing the real one.

"Do you suppose she will want us to say hymns to her all the time?" asked Clover.

"Not all the time," replied Katy, "because you know she'll get tired, and have to take naps in the afternoons. And then, of course, she reads the Bible a great deal. Oh dear, how quiet we shall have to be! I wonder how long she's going to stay?"

Holy fuck. And on it goes.

"Papa," she said, after dinner, "who is Alex, that you and Cousin Helen were talking about?"

"Why, Katy? What makes you want to know?"

"I can't exactly tell – only Cousin Helen looked so; – and you kissed her; – and I thought perhaps it was something interesting."

"So it is," said Dr. Carr, drawing her on to his knee. "I've a mind to tell you about it, Katy, because you're old enough to see how beautiful it is, and wise enough (I hope) not to chatter or ask questions. Alex is the name of somebody who long ago, when Cousin Helen was well and strong, she loved, and expected to marry.

"Oh! why didn't she?" cried Katy.

"She met with a dreadful accident," continued Dr. Carr. "For a long time they thought she would die. Then she grew slowly better, and the doctors told her that she might live a good many years, but that she would have to lie on her sofa always, and be helpless, and a cripple.

"Alex felt dreadfully when he heard this. He wanted to marry Cousin Helen just the same, and be her nurse, and take care of her always; but she would not consent. She broke the engagement, and told him that some day she hoped he would love somebody else well enough to marry her. So after a good many years, he did, and now he and his wife live next door to Cousin Helen, and are her dearest friends. Their little girl is named 'Helen.' All their plans are talked over with her, and there is nobody in the world they think so much of."

"But doesn't it make Cousin Helen feel bad, when she sees them walking about and enjoying themselves, and she can't move?" asked Katy.

"No," said Dr. Carr, "it doesn't, because Cousin Helen is half an angel already, and loves other people better than herself. I'm very glad she could come here for once. She's an example to us all, Katy, and I couldn't ask anything better than to have my little girls take pattern after her."

I'm twelve and on Chapter Seven and already I have learned that in the future, I am expected to be a saint and a martyr. No wonder I had a rebellious childhood.

I read on -

"She met with a dreadful accident," continued Dr. Carr. "For a long time they thought she would die. Then she grew slowly better, and the doctors told her that she might live a good many years, but that she would have to lie on her sofa always, and be helpless, and a cripple.

"Alex felt dreadfully when he heard this. He wanted to marry Cousin Helen just the same, and be her nurse, and take care of her always; but she would not consent. She broke the engagement, and told him that some day she hoped he would love somebody else well enough to marry her. So after a good many years, he did, and now he and his wife live next door to Cousin Helen, and are her dearest friends. Their little girl is named 'Helen.' All their plans are talked over with her, and there is nobody in the world they think so much of."

"But doesn't it make Cousin Helen feel bad, when she sees them walking about and enjoying themselves, and she can't move?" asked Katy.

"No," said Dr. Carr, "it doesn't, because Cousin Helen is half an angel already, and loves other people better than herself. I'm very glad she could come here for once. She's an example to us all, Katy, and I couldn't ask anything better than to have my little girls take pattern after her."

A crippled, angelic, saint, and a woman who would never marry, nor have children. Half an angel. The pressure is on.

"Isn't it horrid?" sighed Katy, as Cousin Helen looked around. "Everything's horrid. But I don't mind so much now that you've come. Oh, Cousin Helen, I've had such a dreadful, dreadful time!"

"I know," said her cousin, pityingly. "I've heard all about it, Katy, and I'm very sorry for you! It is a hard trial, my poor darling."

"But how do you do it?" cried Katy. "How do you manage to be so sweet and beautiful and patient, when you're feeling badly all the time, and can't do anything, or walk, or stand?" – her voice was lost in sobs.

Cousin Helen didn't say anything for a little while. She just sat and stroked Katy's hand.

"Katy," she said at last, "has Papa told you that he thinks you are going to get well by and by?"

"Yes," replied Katy, "he did say so. But perhaps it won't be for a long, long time. And I want to do so many things. And now I can't do anything at all."

"What sort of things?"

"Study, and help people, and become famous. And I wanted to teach the children. Mamma said I must take care of them, and I meant to. And now I can't go to school or learn anything myself. And if ever I do get well, the children will be almost grown up, and they won't need me."

"But why must you wait till you get well?" asked Cousin Helen, smiling.

"Why, Cousin Helen, what can I do lying here in bed?"

"A good deal. Shall I tell you, Katy, what it seems to me that I should say to myself if I were in your place?"

"Yes, please," replied Katy, wonderingly.

"I should say this: 'Now, Katy Carr, you wanted to go to school, and learn to be wise and useful, and here's a chance for you. God is going to let you go to His school – where He teaches all sorts of beautiful things to people. Perhaps He will only keep you for one term, or perhaps it may be for three or four; but whichever it is, you must make the very most of the chance, because He gives it to you Himself.'"

"But what is the school?" asked Katy. "I don't know what you mean."

"It is called the School of Pain," replied Cousin Helen, with her sweetest smile. "And the place where the lessons are to be learned is this room of yours. The rules of the school are pretty hard, but the good scholars, who keep them best, find out after a while how right and kind they are. And the lessons aren't easy, either, but the more you study the more interesting they become."

"What are the lessons?" asked Katy, getting interested, and beginning to feel as if Cousin Helen were telling her a story.

"Well, there's the lesson of Patience. That's one of the hardest studies. You can't learn much of it at a time, but every bit you get by heart, makes the next bit easier. And there's the lesson of Cheerfulness. And the lesson of Making the Best of Things."

"Sometimes there isn't anything to make the best of," remarked Katy, dolefully.

"Yes there is, always! Everything in the world has two handles. Didn't you know that? One is a smooth handle. If you take hold of it, the thing comes up lightly and easily, but if you seize the rough handle, it hurts your hand and the thing is hard to lift. Some people always manage to get hold of the wrong handle."

I am clearly a failure at being disabled. I am not patient, cheerful and I am certainly not making the best of things.

It is funny, reading this long lost prose and remembering how enraptured I was with these books. Not a thought that Katy would have ever become 'cross', despite the lengthy descriptions of her 'trials' - much clapping of hands and quaint turns of phrase like 'How delicious!' and 'cunning bronze slippers'. I think that was part of the charm of the book, aside from the strong message of the saintly invalid. But I wonder, now, how forgotten Katy and her 'trials' were, given that I had woken with a start and remembered her from my sickbed.

We are shaped by what we see, hear, read, and so are our attitudes. In future, when a middle aged woman calls me 'brave' or 'inspirational', I shall smile, and say brightly, in my best Katy voice, 'Why, did you ever read 'What Katy Did?'

Wednesday, January 1, 2014

A Gentle Slap in the Face

I haven’t always used a wheelchair.

I remember listening to a disabled friend who told me, with a smile, that her most hated experience was being asked ‘how she ended up a wheelchair’.

What a princess, man. Seriously. It’s curiosity, right? Surely people have the right to ask ‘the question’, and the right to know. Just natural curiosity about a condition that is unlike your own.

Now I know differently.

It’s a hard thing to explain, the effect of those subtle microaggressions of phrase that cause you to wince over and over and over again. And I’m hyper-aware of the differences in myself since becoming a wheelchair user – I think it’s important to write them down. It's a hard thing to describe, but I'll try.

It feels like this.

One day, a man came up in a shopping centre, apropos of nothing, and slapped me gently in the face. It didn’t hurt, and I laughed.

On the following day, another man came over and slapped me gently in the face. I laughed, but there was an edge to my laughter.

The day after, a man came up to me in a shopping centre and I winced before he slapped me.

On the following day, I stopped making eye contact with men and I wheeled a little faster past them.

Now imagine this. You’re a man, and a woman comes up to you every time you are in the shopping centre and asks, ‘Are you circumcised?’

You might laugh it off, or answer truthfully, or answer flippantly, or ignore the asker. But one day, you’re bound to snap. The imaginary woman isn’t asking other people in the shopping centre if they’re circumcised, and it’s actually none of her business. You feel a little like a dog that is kicked every day – mostly, you’re able to deal with it, but on days that you’re tired, upset, or already angry, you’re going to turn around and bite somebody.

I’ve found myself biting people over and over again. It helps not that I am dealing with a workplace discrimination case, nor that I am a more recent wheelchair user, nor that I have a complicated life. And on the days that I do not bite, I find myself falling into a toxic pattern of learned helplessness. I can’t control what people say to me in a shopping centre, so it is easier to fail to respond or wheel a little faster or refuse to make eye contact when they give the small, sweet smile that says, ‘I am so sorry that you are disabled.’

Learned helplessness. In 1967, the year I was born, a group of scientists discovered that dogs could be conditioned by adverse stimulus which they cannot escape from. Three groups of dogs were placed in harnesses and given electric shocks, and the dogs who learned that they could not do anything to prevent their situation simply lay down passively and whined.

There’s one difference between us and the dogs. Studies show that humans can ‘vicariously learn’ – people can learn to be helpless through observing another person encountering uncontrollable events.

Let’s think about that for a moment. Surely if it is possible for us to learn helplessness, it is possible for us to learn the opposite?

Sure it is. It’s called ‘peer support’ – people with disability watching other disabled people deal with attitudinal barriers with equanimity, dignity and humour.

I’m not sure how we make that happen, the unlearning of helplessness, the taking back of our power to deal with the big and little issues. To end the excruciating pain of powerlessness and support each other to release our capacity and strength and bolshiness.

I want a world where disability is unremarkable and where diversity is accepted. Where we're not helpless, and where a gentle slap in the face doesn't feel like a shocking blow.

“There is no such thing as helplessness. It's just another word for giving up.” ― Jefferson Smith, Strange Places

Make it Count

Like most people who resolved not to make New Year's resolutions, I have made a bunch, mostly inside my head. They probably sound like everyone else's.

The one thought that stuck with me, though, was a long-ago conversation I had with one young man, Jason Dale, who was my work experience student. Jason had Duchenne's muscular dystrophy and was only fifteen when we had this conversation, which turned into a violent argument (about why I should care if he was late or not).

Ten minutes into the conversation, he blurted out 'but I'm going to DIE!' - Duchenne's is a condition which results in a shortened life expectancy for most young men.

I gave him some kind of sanctimonious lecture about how everyone was going to die and 'the point' of existence, and used an analogy about money and life - if you only had three dollars left til the rest of the week, would you spend it wisely, or fritter it away, saying 'What's the point?' He looked at me in frustration and I could tell that he knew that I did not understand, despite knowing both Jason and his brother Andrew, who died some years before, fairly well.

At this time of year there are many resolutions made - but the only one that I am thinking of is 'making it count'. Living every day as though you know, for sure, that your last breath on earth will be taken on 1 January, 2015. Doing whatever you're passionate about, or taking time out, or hugging your family, or spending time with your friends.

Thank you to Jason, who turned out to be my teacher rather than my student. Jason passed away on September 26, 2012. Thank you also to Josh Hackett, Michael Baptiste, Lesley Hall, Shane Oreilly and the many other advocates and friends who have passed on the baton.

I promise to make it count.