Wednesday, February 5, 2014

No More Mr Nice Guy

It’s a nice day, isn’t it?

Not many people know that there are two definitions for nice. The way I’ve used it above – a nice day, a nice dinner, a nice puppy-dog – is one way. But there’s also the definition that refers to a slight or subtle difference – a nice distinction.

Here’s a ‘nice’ topic of discussion – the day you lost your virginity. Everyone remembers it, right? Whether you were sixteen or forty, in the back of your boyfriend’s car or on your wedding night – you remember that day.

I remember the day I lost my ‘niceness’.

I don’t think I was ever a nice person, really. Oh, I was able to smile at people and observe the usual courtesies and social conventions. I considered myself a good friend and would do ‘nice’ things for people, because I liked them or admired them. A lot of people told a lot of other people that I was a ‘nice’ lady.

When I started using a wheelchair, I was almost certainly regarded as still being ‘nice’. But those days are gone forever. It’s a subtle thing, the way you’re regarded – subtle and secret, imbued in rumour and subjective truth. Nobody really knows if your hymen is intact or if you’ve ‘done it’ for the first time, and nobody really knows what others think about you.

I used to be described as ‘nice’. And now I’m described as ‘that asshole’. A slight and subtle difference, between then and now.

Fact: Just becoming a wheelchair user isn’t enough to make you lose your ‘niceness’. It takes time, and having your human rights assaulted over and over again. And very few people can come out of that at the other end with their ‘nice’ intact – it takes a great deal of moral fortitude to cross your legs and mutinously refuse to acknowledge your dignity being stripped away from you, one aggression after another.

I won’t tell you about losing my virginity. But on the day I lost my ‘niceness’, I went to the Art Gallery of NSW.

It was a nice art gallery. There are the usual subtle insults and microaggressions – the woman who tried to charge me for a second ticket for a carer, art displays are in glass cabinets that aren’t viewable from a wheelchair user’s perspective, pictures hung at eye level…not my eye level. But these are easily overlooked and it is an largely unappreciated delight to be able to coast through a flat and level surface, skipping the works you dislike and spending as much time as you like, seated comfortably, viewing the works you love. I had a plane to catch, but not for a few hours. It was a really nice day.

Then I caught the lift to the second floor.

The Goya exhibition wasn’t as thrilling as I thought I would be. I like his work, especially the scenes about the savagery of war – he penned these images after the brutal guerrilla action in the Peninsular War. But I was quite happy to leave and so I made my way to the lift. I pressed the button, and nothing happened.

The lift was broken.

I was still smiling. This had never happened to me before. What an adventure! Somehow, I would get down that magnificent marble staircase, right? And there would be a backup plan, of course.

Almost gaily, I tripped over to the desk and told the clerk the lift was out of order. And felt the first pangs of concern as her facial expression changed from carefree to worried. Very worried.

‘Oh,’ she said. ‘The last time the lift was out of order, it took DAYS to fix.’

My plane was due to leave in exactly four hours.

I have a great sense of humour. I told the clerk I needed beefy, shirtless young men to carry me downstairs, and we laughed. I posted it on facebook, and others laughed with me. ‘It could only happen to you!’ one person exclaimed. (But really, it could have happened to anybody – a person with a pram, an elderly person, a wheelchair user or an amputee who wasn’t good at stairs.)

I smiled and laughed with the clerk and she told me she’d ordered the ‘stair-lifter’ from the ‘boys downstairs’. ‘I hope someone remembers how to use it!’ she exclaimed. I stopped laughing when the boys from downstairs came upstairs with the stair-lifter, which looked like a seventeeth century torture device.

I looked at this thing, and for the first time felt a real sense of anxiety. The guy said he hadn't used it before, and the other guy said he'd used it once, and he could remember how it worked, he thought. I looked at the marble stairs and thought about putting my life in the hands of these two guys in suits, whose job it is to usher people around art galleries.

I’m a Scout leader and I like adventurous activities. I’ve spent a hell of a lot of hours hanging off the edge of a cliff and paintballing and jumping out of planes. I’d even spent some time wheelchair abseiling with Dreamfit, which didn’t frighten me at all – those guys know what they are doing.

These guys didn’t.

The first guy scratched his head. ‘Your wheelchair is unusual,’ he said.

Why?

‘Well, the footplates don’t come off.’

No, most wheelchairs have static footplates these days. Unless they’re medical model wheelchairs or unless the user specifically wants them.

‘Well,’ he said sadly. ‘Your wheelchair won’t fit. I don’t know what we are going to do.’

It took ten minutes of discussion before they figured out they could get a wheelchair from downstairs and use that. It was an interesting discussion, and I felt my ‘niceness’ slipping away from me. Quite quickly, considering this was a first date. There were phrases bandied around like 'dontworrywewillcarryyourwheelchairdownstairs' and 'noyoufuckingwontyouwillletmetakeitapartbecauseitcost15Kandcarryitdownpiecebypiece'. But I hung onto my niceness with both hands, and tried to notice the positive things, the amusing things.

My wheelchair was pulled apart and shoved against the wall, and I thought about how many people would come and look at it with great introspection, thinking ‘hmm, I can see what the artist was trying to say here. A wheelchair, deconstructed. ’ You can find humour in almost anything.

The man from downstairs said, ‘Let’s get you tipped back.’ So they started tipping me aback til I was lying, head down, feet into the air.

Now you must remember that all this took about ten minutes, the positioning. And in this time, the lifts were out of order and so many people were walking past us to access the stairs.

Some made awkward comments. Some laughed. Some said nothing and pretended that there wasn't an 80 kilo Scout leader being positioned awkwardly with her arse pointing to the ceiling by two sweating men in suits.

I was sort of okay with it for a while. Because we trust people. You know? Like doctors, or firemen, or people who rescue us. But then I had a moment of clarity, when my head almost hit the floor because I was tipped backwards so far.

And suddenly the realisation came to me. ‘These guys don't know what the fuck they are doing,’ I thought. They told me that they didn’t, but I didn’t realise until now what that meant. This is dangerous and humiliating and wrong.

I used to coach kids in abseiling, remember. I knew more about this stuff than they did. That pissed me off, that I was now terrified and strapped incorrectly into a dodgy manual wheelchair on a steep marble gradient.

That was the moment I lost my ‘niceness’.

Stop, I said. No, I said. You’re not doing this right. You’re not doing this at all, actually. Take me back up the stairs.

And one of them looked at me and had a lightbulb moment and said 'oh, the chair is round the wrong way'.

There’s more, of course. It took a long time. They eventually loaded me onto the machine correctly, equally terrifying, and I got to be hauled down the stairs, very, very slowly, in a machine that sounded slightly louder than a Sherman Tank. I took a video – the best part of it is the noise and the small crowd who stand at the bottom of the stairs and the child who points until the parent drags her away.

Was that the moment that I stopped being nice?

It’s never that one incident. It was the cumulative indignities of that day, sure - but it was also the inaccessible cloakroom, the complicated and faulty lift system, the stares on the stairs, the way the taxi didn’t pull in at the kerb properly despite the driver seeing that I used a wheelchair, the Qantas guy who tells me he is being ‘smashed by wheelchairs today’ and that I will have to wait. The guy who puts his hand in my face in the universal ‘shut the fuck up for a moment’ signal because he was busy and didn’t have time to look at my permit – the taxi driver who tried to refuse my fare at the other end because ‘your wheelchair might scratch my paintwork’.

Like the stair-lift, it took a long time to get there, but we’re here. At that hymen-breaking moment, when I popped my niceness cherry – when I said out loud, ‘Enough.’ When I stopped smiling and being grateful, when I gave myself permission to refuse to be treated like a second class citizen.

The taxi driver looked me in the eye and said, ‘Your wheelchair might scratch my paintwork.’ And I looked right back at him and said, ’Buddy, this is a fight you want to pick with another fucking woman on another fucking day. Put my wheels in the back of your station wagon. And do it now.’

So now you know how I lost my 'niceness'. No more Mr Nice Guy. If you hear me being described as that ‘nice woman in the wheelchair’, you have my permission to laugh uproariously and correct them immediately. It’s unlikely that my niceness will grow back now.

Saturday, February 1, 2014

On Peer Support and Platform Nine and Three Quarters

"Where is this school, anyway?"  

 "I don't know," said Harry, realizing this for the first time. He pulled the ticket Hagrid had given him out of his pocket.  "I just take the train from platform nine and three-quarters at eleven o'clock," he read.  

 His aunt and uncle stared.  

 "Platform what?"  

 "Nine and three-quarters."

  "Don't talk rubbish," said Uncle Vernon. "There is no platform nine and three-quarters."

If you’re a Harry Potter fan, you’ll remember this quote from ‘Harry Potter and the Philosopher’s Stone’. Platform Nine and Three Quarters is a platform at King’s Cross Station in London. It’s magically concealed behind the barrier between Muggle Platform Nine and Platform Ten, the place where Hogwarts School of Witchcraft and Wizardry students board the Hogwarts Express in order to attend school.

To get onto the platform, you have to walk directly at the apparently solid metal ticketing box, and you’ll disappear into the wall.

I was thinking about the quote yesterday, and how Harry worked out how to get onto the Platform. He didn't get the advice from a Muggle. He got it from a peer.

In the disability sector, people are often given ‘Muggle advice’ – advice from people who do not ‘live the life’. They’re often highly trained professionals and sometimes their advice is really useful.

Often, it is not.

That is where peer support comes in.

Peer support happens when people provide knowledge, experience, emotional, social or practical help to each other. If you’re a peer, you’re an equal – you don’t have a power relationship, or a paid relationship – you’re just another person who can offer support by virtue of relevant experience.

Been there, done that.

That’s what Harry did. When he got to the station, he didn’t ask a person who was ‘in charge’ – nor did he google ‘Platform Nine and Three Quarters’. He didn’t contact the architect or the head of King’s Cross Train Station. He watched someone doing it, and asked for help. Read on.

‘What looked like the oldest boy marched toward platforms nine and ten. Harry watched, careful not to blink in case he missed it -- but just as the boy reached the dividing barrier between the two platforms, a large crowd of tourists came swarming in front of him and by the time the last backpack had cleared away, the boy had vanished.

"Fred, you next," the plump woman said.

"I'm not Fred, I'm George," said the boy. "Honestly, woman, you call yourself our mother? Can't you tell I'm George?"

 "Sorry, George, dear."

"Only joking, I am Fred," said the boy, and off he went. His twin called after him to hurry up, and he must have done so, because a second later, he had gone -- but how had he done it?

Now the third brother was walking briskly toward the barrier he was almost there -- and then, quite suddenly, he wasn't anywhere.

There was nothing else for it.

"Excuse me," Harry said to the plump woman.

"Hello, dear," she said. "First time at Hogwarts? Ron's new, too."

  She pointed at the last and youngest of her sons. He was tall, thin, and gangling, with freckles, big hands and feet, and a long nose.  

 "Yes," said Harry. "The thing is -- the thing is, I don't know how to --"  

 "How to get onto the platform?" she said kindly, and Harry nodded.  

 "Not to worry," she said. "All you have to do is walk straight at the barrier between platforms nine and ten. Don't stop and don't be scared you'll crash into it, that's very important. Best do it at a bit of a run if you're nervous. Go on, go now before Ron."

Peer support. You watch others do it, and you think about doing it yourself. You wonder if you can do it, and then you ask others how you can do it. They support you, give you encouragement – and when you run at the Platform you might be scared to death, but you know you’ll be okay.

Then why don’t we pay more attention to it?

There’s a new scheme in Australia called the ‘National Disability Insurance Scheme’. I’ve been asking a lot of people where the gaps are, what is needed. And I hear over and over again – information, advocacy – and peer support.

There are pockets of peer support cropping up, but it’s a bit hit and miss. And rarely funded, and rarely designed and run by people with disability themselves. It’s a bit like having a bunch of Muggles sitting in the National Rail office, talking vaguely about the need for more information around Platform Nine and Three Quarters without actually having a great idea about how it works on the ground.

Muggle advice. Under the rules of the National Disability Insurance Scheme, my 22 year old city based physiotherapist can become a planner, but I cannot. Call me sceptical, but I don’t think she knows a lot about equipment, support, Scouting, living in the country, parenting – let alone planning. She knows a LOT about physiotherapy. On the other hand, most people with disability spend their lives planning – so why is an allied health qualification important when it comes to being an NDIA Planner?

Disabled people consistently choose cheaper and more effective options if they are allowed to make their own choices and support each other to do so. Recognising that disabled people are the experts in their own lives doesn’t mean just paying lip service to the idea – it means funding and implementing and supporting real peer support networks, with actual involvement at every step of the way.

I’m dreaming of a time when governments and powerbrokers recognise that and move forward with the idea. I wonder what would be possible if we were supported to work out how to crash through the barriers that we face every day - with each other, not people who insist on doing things 'to' or 'for' us instead of 'with' us.

A world where people with disability could share and support and do things for themselves and each other. It would be – well, magic.