Saturday, July 15, 2017

Stories Create Culture

In the disability community, our diversity is our worst enemy.

It is hard to be proud in the face of oppression and discrimination, but it is harder when your culture is almost wholly comprised on stories based around those things.

Stories create culture. The response to the story makes it narrative, and it informs the way people behave. Our public narratives are all created by non disabled people - inspiration and charity and tragedy, and our private narratives are concealed by our diversity. 

Even stories which should belong to us have been appropriated by non disabled people as inspiration porn. We're objectified every day because of it. And even stories that reflect pride are often based on protest. Although it is wonderful being part of a community who are fighting for their rights, there is nothing beautiful about the desperate struggle to stay out of nursing homes or have good health care or access or just to be part of the world.

It is hard to think of stories which reinforce crip culture as positive, because they are secret, even when they are commonplace.

Nobody, unless they are blind, know that blind people often hold hands when traveling in groups.

Nobody knows that Deaf people have their own culture and language and that families with intergenerational Deafness have a completely different concept of normal which often results in pride.

People don't know that autistic people aren't just 'good at computers'. Or music. They don't know that having minds that utilise visual or pattern or creative or memory based thinking skills are part of how the autistic mind operates every day - and yes, even if you also have an intellectual disability. If you're intellectually disabled, you're no less autistic.

There are hundreds of cultural secrets that disability communities hold and they are all as invisible as a disabled person in a nursing home or a sea of dead disabled bodies under a golf course in Wagga Wagga.

They are invisible not just to non disabled people but also to many members of the disability community, because our diversity is our worst enemy. Cross disability solidarity - and other intersectional solidarity - is the only way to bring our cultural narratives into the sunlight and help us become proud.

Saturday, January 21, 2017


All those people who rightly condemn the nationalist fools shouting about integration. Integration, which happens when people are forced to give up their identity and culture and language in order to adopt a country or culture not of their own.

The same condemning people who tut tut over seventy years of the forced removal of Aboriginal children from their families. Those stolen children were sent to missions and institutions where they were taught to reject their heritage and their language and become 'assimilated' into white society.

And yet those people are the same people who approve of ABA, the practice of training autistic children to be as non-autistic as we can possibly make them. Eye contact, no stimming, it's weird and abhorrent otherwise, our native practices. What our neurology dictates to them is wrong, because our neurology is not like theirs. They approve of the idea that 'some disabled people are too disabled to live in the community' or have the same right to schooling as other children.

And then there's the endless insistence on walking, even for children who will never walk, because you are normal and we are not.

It's not such a difference, is it? You might cloak your intolerance in a professed desire to help those poor, poor things and you might get a butterfly or ribbon or jigsaw tattoo to show your love and solidarity. Wear a wristband, step up for Steptember.

But the outcomes are the same. Those poor stolen children who were taught to deny their Aboriginality, the stolen children who will never tick the 'autism spectrum disorder' box on a form. The now grown children with PTSD from being therapied into something they are not. Over and over the damaging message that you are less than and other and that you must be changed or fixed because you are not okay just the way you are.

You don't have to be an angry white man draped in an Australian flag to be arrogantly intolerant of difference. It doesn't even matter whether you can distinguish between the words 'you're' and 'your'. If you think we're broken, less than you are, then you're just the same.

Monday, January 16, 2017

Administrative Error - An Open Letter to the Greens on Euthanasia Safeguards

An Open Letter to the Greens on Euthanasia Safeguards 

Dear Greens

As I write this, the Greens are proposing euthanasia legislation in both South Australia and Western Australia.  Although Greens have not consulted with the disability community – the population most at risk - they say that they’re putting ‘safeguards’ in place, including a panel of doctors who will make the final decision about our lives. 

Last year, disabled people lobbied against proposed euthanasia legislation in South Australia.  I wrote about it here, and there are links to our testimony.  The Bill failed by one vote.  

And then today, this story broke.  I’m writing this not just for my fellow disabled people, but for all the members of my community who have woken up with DNR tags around their wrists.  For activist Stella Young, who was once told pre-surgery by a nurse that at 32, she’d had a good innings.  For the people who are switched off by your ‘safeguards’ every day. 

They’re not single incidents, or bad eggs, or chance occurrences.  A fortnight ago, a clinician told his patient that he would ‘want to die if he was her’ and asked if she was in favour of euthanasia.  It’s common for people to tell us that they’d ‘rather die than be in a wheelchair’.  There’s a pervasive attitude of ableism in Australia and disabled people encounter this every day, whether you believe that or not.  Deep-seated, institutionalised ableism and a belief that disabled people are burden, deficit, less worthy, other.  Better off dead. 

When we die, our deaths are not mourned.  It’s a blessing, they say.  If we die as a result of violence, it’s a mercy killing.  We’re burdens, you see.  If we die as a result of institutionalised ableism, it’s an administrative error and there is never, ever any public outcry. 

I hope you read this.  Think about this.  Think about why ableism contributes to our deaths, which often we crave, because you haven’t fought for the right for us to live well before you’ve fought for us to have the right to die. 

This is the story of a real woman.  Her name was Shona Hookey and she died three years ago in NSW.  But I want you to imagine that she’s you, because if you were intellectually disabled or had a disability where you required high support, it *could* be you.  

Samantha Connor 

Imagine this. 

You’re constipated.  You have the kind of pain that comes with constipation, but you can’t tell anyone and you can’t do the usual kinds of things that relieves constipation. 

Your constipation grows worse, and you’re in intolerable pain.  It’s because you have an impacted bowel, but you can’t tell anyone. 

It’s 1.30pm.  You’re taken for an unrelated doctor’s appointment and you are in such pain that you begin to cry. 

The doctor looks at you.  He says that you are highly agitated and distressed.  You’re ripping your shirt, you’re drenched in sweat.  He doesn’t know what is wrong with you and neither does anyone else.  If you’re not better in half an hour, you should go to the hospital, he says to the people who are caring for you.  They take you back to your group home.

5.30pm. It’s been four hours now and you start to cry again.  They serve you dinner but you are in such pain you lie on the floor and bang your head, over and over.  It’s the only way you can tell them you’re in pain. 

They give you two Panadol. 

One of them takes a video on their phone.  They’ve never seen you lie on the floor, crying with pain and banging your head over and over.  Their plan is to show another staff member the video to explain why you are behaving in this way.  Later tonight.

It’s 19.45 pm and another person arrives at your care facility.  She knows you well.  It’s not like you to behave like this and she calls 000.  She watches you lie on the ground.  You’re banging your head, you’re very pale and you can’t support your own weight when standing.  You’re moaning in pain and when they touch you, you’re ice cold. 

When the ambulance arrives in the ambulance bay, your worried caregivers tell the staff that your behaviour is very unusual.  The triage officer palpitates your stomach – it’s rock hard.  You’re grey in the face, she notes, your limbs are yellow.  They record it on a file note.  

You’re thrashing so much they can’t take a blood pressure reading, they can’t find your pulse.  You’re in obvious pain and they think that you might be so very cold because you’ve been lying on the floor, for hours, in winter.  

There are rows and rows of trolleys and so you never get into the Emergency Department at all. 

You’re in the ambulance bay, writhing in pain.  You’re put onto a trolley and left for two hours – eventually they triage you at Category 3, saying you should be seen by a doctor in thirty minutes, despite not having specific vital signs recorded, despite your agony. 

Nobody ever gives you pain relief.  It’s been at least five hours since you had your last Panadol.  Your support worker tries to get the attention of the nurses and fails.  

A doctor, Dr Mestrige, quickly assesses you.  He puts a cannula in your foot.  He takes blood, orders an x-ray.  He doesn’t give you any pain relief or fluids.  He doesn’t touch your distended stomach.  He doesn’t do anything else – in fact, he leaves. 

You’re in and out of consciousness now. 

It’s hours and hours and hours later and you’re still in the trolley bay and you’ve stopped responding.  Somebody from the hospital notices and they ‘escalate’ you, but it’s now 1.20am.  It’s been twenty four hours since you became so unwell that you were banging your head on the floor in pain.  And you’ve had two Panadol eight hours before. 

You’re ‘escalated’ and finally they bring you into the hospital – not the ED, but the resuscitation area, so they can save your life.  Surgery, they think, because you are gasping in pain.  Your stomach is as hard as a drum and they wait an hour before try to stabilise you, intubate you, ventilate you.  It is half an hour after finding that you have no pulse that you commence CPR.  The hospital later say that they started CPR when you went into cardiac arrest.  A shot of adrenaline to the heart and your heart starts again, then stops, they said.  Still your body keeps going.  You're 29 and your body is strong.

The Coroner will later say that the testimony of Dr Mestrige, who is heavily criticised, ‘doesn’t seem like a reliable guide’, especially as the progress notes say something very different.  But that's later, after you're dead.  For now, you're still alive.

The doctor says that you were almost dead when you got to the resuscitation bay, but that’s not what others say.  Someone calls the Public Guardian, who is in charge of your health and affairs – your family say they didn’t know where you’d been institutionalised and that they hadn’t seen since you went into care. 

They discuss your life with the Public Guardian, who says that your resuscitation status is at the discretion of the medical staff.  It’s eleven minutes after you’ve gone into cardiac arrest for the first time.  Another doctor records in his notes that they’ve been told that you are for ‘full resuscitation/CPR/intubation. 

At 3.30am, you’re still alive.  They’re now manually pumping oxygen into you.  Dr Mestrige tells your caregiver that they don’t know what’s wrong with you.  He’ll have to take legal advice, he says, and he asks her to leave.  

And then we come to the crux of your routine, bog standard death – hundreds of disabled people die of impacted bowels when they are in care, primarily because of lack of exercise and neglect and poor diets.  But there are four witnesses who come forward later after making careful notes – four witnesses who have had separate conversations with Dr Mestrige, four conversations which say essentially the same thing – that Dr Mestrige considered your life less worth living than others, because you were intellectually disabled. 

They are interesting conversations. 

‘Look at her, she’s 29, if she was normal we’d treat her differently,’ one witness says the doctor told her. 

‘Given her history, should we really treat her?’  The caregiver said that if he didn’t, he’d have the public guardian to deal with.  That’s when they call the Public Guardian.

And back at the office of the Public Guardian, the duty officer takes faithful notes.  This is what they say. 

‘Dr Mestrige called to advise that Ms [Hookey] had been admitted to hospital yesterday afternoon. She has had an [intellectual disability] and history of ingesting objects. Dr Mestrige advised that she was very unwell and dying. He advised that scans did not reveal anything had been ingested but that she was septic.

Dr Mestrige requested advice as to [whether] or not to resuscitate given her intellectual disability and quality of life. I advised that he should not be making decisions based on her disability but on her presenting condition and his clinical opinion. Dr Mestrige asked if I was a medical practitioner. I said no. He said well you can’t help me.

 I attempted to explain the [Public Guardian] decision-making role in relation to end of life matters and that he needed to make a clinical judgment based on her condition as to [whether] resuscitating was indicated or [whether] it was futile. As I was speaking to the [doctor] he indicated that Ms [Hookey] was arresting as we were speaking. He thanked me and hung up. (Emphasis added).’
The testimony rolls on and it’s even corroborated by another doctor, who gets a call.  Dr Mestrige says that you’ve arrested when administering CPR – given her developmental delay, how long should the resuscitation attempts go on for?  The doctor tells him that if your medical condition is reversible, they should continue resuscitating until the surgical team can come and assess you. 

 ‘The doctor appears to have taken the fact that Shona was severely intellectually disabled into account in an irrelevant way that was disadvantageous to Shona’, says the Coroner.  

The Coroner's report doesn't tell us what time you died.  

The Department of Family and Community Services made a number of recommendations and reviews around administrative practices and staff culture following your death.  They wrote an employee development program and a policy called ‘Good to Great Policy Framework’ and a ‘Continuous Improvement Review Tool’.  They made some changes to the system at the hospital, too.  But you’re just as dead, and the Coroner doesn’t recommend any further changes for either hospitals or disability settings in NSW – other than asking that hospital keep better records. 

I don’t know where you’re buried, or who misses you.  The Coroner says Shona’s family mourns her deeply – it is the second daughter her parents have lost - and he praised them for being ‘remarkably forgiving and generous spirited’ about the system that killed their daughter.  I don’t know if your death keeps anyone in that system awake at night.  I hope it does, but I suspect you’re just another number in a system that routinely fails disabled people. 

And this week, another family came forward.  Their daughter had also been taken from state-run Plane Tree Group home to Campbelltown Hospital with ‘increasing agitation’, swollen feet.  In February of last year.  

She was also Aboriginal and was four years older than 29 year old Shona.  She died in hospital eleven days later and her disability was cited as ‘contributory’, despite the autopsy saying she’d inhaled food and contracted pneumonia, despite it saying that she’d had pneumonia prior to being admitted.  

There’s no inquest planned. 

Your name was Shona Hookey and the people who killed you are the people the Greens want to keep us safe. 

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'.