Monday, December 26, 2016


Roll up, roll up.  Here’s the new Freak Show, right here, right now, right in your country.  It’s not sixteenth century England, nor nineteenth century America.  You don’t even need to go to an amusement park, a circus, a vaudeville hall or museum.  It’s coming to you right from your Twitter feed, in your art gallery, from your Facebook newsfeed.  
It’s ExploitAbility. 

We’re calling this brave new trend ‘ExploitAbility’ to bring it in line with the hundreds of other disability organisations with Ability in their headline (note the capital A) – why not?  It’s as good as any other name to describe the plethora of tragedy and pity porn that’s currently being rolled out as an alternative to inspiration porn.  It’s to raise Awareness, you see.  About whatever particular issue is the flavour of the day – diagnoses, violence, poverty and homelessness.  And like those Freaks in other long-gone shows, our stories are appropriated for public consumption.  You just can’t get enough.  

The late nineteeth century Freak Shows were incredibly popular.  People queued to watch exhibits of people with physical, mental and behavioural rarities, exploited for profit.  Some disabled and non disabled ‘Freaks’ were able to choose to participate for a wage, but it was often a choice between exploitation and poverty – nothing has changed there, either.  And for many people, especially those with conditions like microcephaly, consent was never given.  

That brings us to ExploitAbility, the new world Freak Show.  Because we’re living in 2016, we’re oh so much more civilised.  So here are the rules to be an Official Member of the ExploitAbility Freak Show –
You must not be paid.  Good enough that you're going to be profiled in some widely promoted ExploitAbility production (although there’s some discussion about payment in pageants and television shows about short statured people).  It's 'art' or it's 'awareness raising' or it's for the common good.  And if you are in possession of one giant testicle, if you’re morbidly obese, if you have a rare medical condition that makes you look exceptionally different, you’re IN - for the glory, you understand, not for the minimum wage, no matter how many dollars they propose to make from your story.  Television shows and exhibitions and magazines and click bait articles that start with YOU’LL NEVER BELIEVE…all kinds of media, all kinds of disabilities.  At ExploitAbility, they’re an equal opportunity non-employer.  

You must tell your story.  Your tragic story is what it’s all about.  It’s how we won the National Disability Insurance Scheme, bleeding our private lives all over social media and over the newspapers.  Two showers a week, sleeping in our wheelchairs, no dignity, here’s a picture of my child having a meltdown.  Some of us made the decision to make that trade-off – compromising our privacy and dignity in return for disability care and support for the whole nation.  But don’t be fooled, we're not always in charge of how we're depicted or how our stories are told.  Our stories are our most valuable commodity – valuable not to us but to the hardworking ExploitAbility staff, who are paid on a commission comprised of pain and tears.  It’s the most toxic of combinations – the culture and prevalence of disabled people telling their story to the world and an ever hungry, growing need for More Freaks.  The Shunned, the Deformed, the Weeping Women and the Tortured Souls, all neatly packaged into eight hundred words or thirty lineal metres or fifty one minutes and sixty seconds.  

You mustn’t be the actual NARRATOR of your own story.  Just as PT Barnum promoted his Freaks through an oral spiel or printed advertisement, a non-Freak (or non-disabled person) must be the person narrating the story of your tragedy.  It adds to the authenticity of watching someone who is ‘other’ when their story is narrated by someone eminently respectable, someone with a profile, someone who is relatively untouched by the type of experience or disability that you own.  You’re object, not agent and any part you play in relaying your own story is carefully edited and selected for suitability for a hungry audience.  And once you sign your rights away – you’d want to carefully look at the ExploitAbility contract - you give away your control over where and how you are viewed.  Forever.
All those long gone Freaks.  I wonder what their lives were like after the shows had shut and their lives as they knew it had changed forever.  And more than that, I wonder what that public exploitation did to them.  What the end effect was on people who spent their lives being pointed at and laughed at and gaped over and pitied.  I wonder if it would have been different from being pointed and laughed at or pitied on the street. 

ExploitAbility.  You’re supporting them, you know.   Every time you buy a ticket to something commercial that ‘raises awareness’ or ‘tells a story’ that is told by a person who is not a member of that minority group.  Every time you watch the TLC network on Foxtel, every time you click on that story with the shocking headline.  You’re not just contributing to their revenue but actively supporting and promoting the exploitation of current day Freaks and contributing to their othering.  Frank Lentini, the three legged man, was quoted saying, My limb does not bother me as much as the curious, critical gaze.’

What you pay to view Freaks allows you to fulfil the type of curiosity that caused any Peeping Tom to first look through a window.  You’re feeding your own ableism or personal bigotry by giving yourself permission to compare yourself with our perceived inadequacies.  You're transforming us into fodder for public consumption and objectification by non disabled people.  And it’s not just we disabled people who are considered to be freaks.  Roll up, roll up, see the Fat Lady, the Poor White Trash, the Sexually Aberrant, the Raped Ladies, the Strangely Exotic and Quaint.  My 600 Pound Life.  The Man with a Half Body.  Roll up.  

When it comes to voyeurism, difference is a great leveler.  We're all the same in the eyes of the non-Freak viewer. 

The Freak Shows died out.  They died out when medical science started helping people understand that medical conditions and differences were commonplace and explainable.  And eventually, as public opinion evolved, the display of human novelties became distasteful.  

What a shame it’s re-emerged in modern day Australia.
This post is dedicated to any member of a minority group who found their image used by an agency or organisation, years later, despite only granting permission for a one off use many years before.
It's dedicated to all those freaks - The Lizard Man, the Elephant Man, Penguin Boy, the Bearded Lady, the Dog-Faced Boy.  All of them, living and dead.
And most of all, it is dedicated to members of the disability community past and present, who deserve to have both the right to privacy and dignity and control over their life and story. 
Image description - a black and white photograph of an old style freak show.  A crowd of spectators face a large display stage and stall.  An advertising banner reads 'Human Freaks Alive' and 'Main Sideshow, Human Freaks'.

Sunday, December 11, 2016

The Cripple High Five

There we were, on the dance floor, feeling slightly conspicuous.  Drunk enough not to care, but conscious that we were in our forties (in my case, late forties) and far older than most of the twenty somethings on the dance floor.  We danced at the outskirts – me in my wheelchair, my three friends in a group around me.  

 It’s a different thing, dancing when you’re older.  You’re not dancing to please anyone but yourself.  If you’re with friends, you’re dancing with wild-woman abandon, uninhibitedly, to celebrate your friendship and your own joy in the moment.  There are those casual encounters with strangers, a shared dance, a conversation, but mostly it is about the music and the dance and the celebration of being alive. 

We’d been there for a whole twenty minutes.  And then it happened. 

A young woman in a crop top and sneakers danced over to us, attracting every male gaze along the way.  She saw me, made a beeline for me, and held her hands out to me, palms up.  ‘High five!’ she said brightly.  And I could do nothing but put my hands up to slap hers and keep a straight face until she danced away, smiling. 

My friends were shocked and astounded.  

‘That was a cripple high five,’ I said.  It doesn’t happen often, the cripple high five, but I’m increasingly used to weird interactions with strangers.  It happens all the time – not every day, but often enough to make more of an impact than it should.  It doesn’t surprise me anymore, but it inevitably leaves me feeling humiliated.  It’s a sign of condescension, of pity, of a misguided and patronising kindness that makes me want to crawl away and never, ever emerge from my home again. 

‘Why did she do that?’ asked Peta over the music, eyes wide.  She’s a disability activist who spends a lot of time around other disabled friends, including people who are far more visually different than I am.  She’s watched weird interactions time and time again – it was a rhetorical question.  We laughed a little.  My friends apologised for the young woman, which amused me no end.  

It took about fifteen minutes for it to happen again. 

This time, a young woman approached Peta.  ‘I have a cousin like that.’  

‘Do you mean that she has red hair?’ Peta asked, knowing exactly what she meant.

‘No, she’s mentally disabled,’ the young woman replied.  Peta asked her if her cousin used a wheelchair. 

‘No, she’s mentally disabled,’ she repeated, looking confused.  Clearly a change of tack was required, so she changed course.  ‘It’s so sad that your friend is in a wheelchair,’ she said.   Peta looked at her.  ‘Why?’ she asked, and was met with a blank stare. 

The young woman extricated herself from the situation quickly and turned to me.  

‘Are you having a good time?’ she asked.

This is our online catch cry for Patronising Bastards.  Always in capitals, because it’s rare that people don’t shriek at you (if you’re disabled you’re probably also hard of hearing, you see).  You need to resort to humour, or you’d be drowning in despair.   We use it often.


My other two friends, less accustomed to condescending attitudes towards disabled people, were visibly shocked.  So when the next person wandered over, smiling broadly at me, I could see Protective Girlfriend Mode being violently switched to ‘on’.  This was never going to end well.

This was a young man who thumbs-upped in my face, clearly delighted to see me ‘getting out into the community’.  ‘What is WRONG with you?’ one friend said.  He looked confused.  After all, he was just being kind.  But nobody was thrusting upraised thumbs into my other friends’ faces, nor high fiving them, nor smiling pityingly at them on the dance floor.  He was just being kind, but he was being kind because I am disabled.  

Peta resorted to snark.  ‘Would you like to give her a drink?’ she asked, and handed him my empty glass and water bottle.  And he dutifully poured it and handed it to me whilst my friends laughed and gaped behind him.  

When he eventually wandered off, he looked slightly bewildered. 

As I said, it’s not unusual.  But this night was unusual.  In just under four hours, we counted nineteen instances of condescension and by the end of the night, we were unanimously discomfited. 

What I wasn’t prepared for was how the barrage of micro aggressions made me feel. 

Even surrounded by a posse of supportive women, I felt as though I had been slapped in the face nineteen times.  Those misguided, well-meaning interactions weren’t born of any conscious desire to treat me differently, but they stung more than any personal slight.  In their eyes, I was no longer a woman, or even an old woman.  I wasn’t a slightly drunk person with a raucous laugh, nor a woman who you might make passing comment to without asking intrusive questions.  I was an object of pity and charity and I was their good deed for the night.  And every single time I was metaphorically slapped, my head dropped, my smile faded, I became bowed under the weight of my humiliation. 

Cripple high five.
I have a cousin like that.
It’s so sad she can’t walk.
Thumbs up for being out in public.
Inappropriate hand kiss.
Personal unsolicited cripple lap dance from a boy young enough to be my son.

Over and over.  

And this is at the heart of it all, isn’t it?  The soft bigotry of low expectations is directly related to that perception that we are less than human, pitiable creatures. Those charities and that media that perpetuate those stereotypes about disabled people have a lot to answer for.  It’s why we can’t get jobs, why disabled people find it hard to make friends or have relationships, why we’re not seen as anything but other.  The head-patters and patronisers have learned their lesson of unconscious bias well.

Those pervasive attitudes are more damaging than any lack of a ramp.  I understand wholly why one disabled friend has a framed, cross stitched sampler on her wall that reads, ‘I hate people.’

There’s not a lot we can personally do to change those deep seated attitudes across Australia.  It takes a long time to create systemic change.  And part of why we lobbied so vehemently for the National Disability Insurance Scheme was so we could be IN the world, working alongside non-disabled people for regular wages in regular workplaces, living in ordinary houses with ordinary neighbours and growing up with our non-disabled peers in inclusive education environments so that people would find disability as unremarkable as eye or hair colour.  

I don’t think that change is going to come in my lifetime, because ableist attitudes are too entrenched.  But I fervently hope that a day comes where the Cripple High Five is a thing of the past. 

Image description - a packed dance floor in a night club