Monday, December 26, 2016

ExploitAbility



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.

ARE YOU HAVING A GOOD TIME?
IT’S SO GOOD TO SEE YOU OUT!
GOOD FOR YOU!

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






Wednesday, October 19, 2016

Why We Must Not Go Gently Into The Night



You can see the look of strain in Glenda Lee's eyes as she prepares to meet with media.  There are cameramen bending down to wheelchair height to clip microphones onto her brightly coloured scarf.  Her power wheelchair is wedged into an artfully arranged cluster of manual and power chairs.

'This is the last thing I will do,' she says.  'I'm sick of fighting.  I've been doing this for forty years.'

The other women nod in agreement.  They are not anti euthanasia activists - they are disabled women who have flown or traveled to protest the South Australian assisted suicide bill from a disability and human rights perspective.  Half are South Australian.  Others are from NSW, Victoria and WA.  One by one, they've been admitted through a side door and ushered into a small lift to hold a press conference in a courtyard at Parliament House.

'It wasn't accessible at all until a few years ago,' says a staffer brightly.  The women look unsurprised - there is little disability representation in South Australia, especially at government level.  There are no funded disabled persons organisations, no ministerial advisory council - those organisations were defunded or discontinued years ago.  The only voice for disabled people is a political party, who claim that 'most disabled people support euthanasia'.  Not true, say the women.  We've never been asked.  Any of us.

Four of the women, including Glenda Lee, are eligible to die under the legislation.  I'd be one of them if I lived in South Australia.

Is it personal?  One of the journalists has an avaricious gleam in his eye.  Disabled people are always a good draw card, especially angry disabled people.  Especially people who are literally fighting for their lives.

Of course it is personal, I tell him.  It's about our lives, the lives of my children, the lives of members of my community.  We're here to debate the worth of our lives and argue that we must be assisted to live before we're assisted to die.

He doesn't understand.  I can see it in his eyes.  Why would you want to die?  Who would make you die if it was against your will?  My eyes meet the eyes of another woman, and she patiently explains more.  Slowly, carefully.  But still he looks confused.

We're trying to cram a thousand complex messages into twelve minutes worth of sound bites, and it's impossible.
'It's not possible to explain that the concept of 'intolerable suffering' in the legislation is flawed, because half of us live in poverty, are victims of abuse, have no access to care and support - our 'intolerable suffering' comes often not from our disabilities but from external sources.  We don't have time to explain the concepts of ableism and how daily discrimination impacts upon our lives and often causes our deaths.  Or how we often want to die because our lives are of such poor quality - although mental health conditions are outlawed under the legislation, most of us experience poor mental health as a consequence of marginalisation.   
Our degenerative disabilities make us eligible for a fast path to the grave, despite the careful weasel wording in the Bill - all disabilities arise from a 'medical condition'.  And they will absolutely not understand that their 'safeguards' are meaningless to us - their trusted medical professionals are often our executioners because of their perceptions of our 'quality of life'.  We are switched off in hospitals every month.' 

Most of all, it is hard to explain how we are devalued and treated as 'less than'.  And as an activist who fights against violence, abuse and neglect of disabled people, I have hundreds of examples where disabled people have been murdered, where their perpetrators have walked free, sometimes into paid interviews.  Where our deaths have been described as mercy killings and our lives have been described as 'burdensome'.

I'm choking up, because one of the examples was too recent.  It was the day before, where a family of four - including two autistic children - were killed in an apparent murder suicide.

I talk to Katharine Annear, an Autistic woman who is also the Chair of the Australian Autistic Self Advocacy Network.  She's seen the coverage too - pictures of a pretty woman, smiling brightly, two small children at her side.  All dead, and no information about how, but already the social media feeds are buzzing with the words 'mercy killing' and 'act of love'.  People are talking about how hard it is to raise disabled children and using phrases like 'don't judge' or 'walk a mile in their shoes'.

I just can't, she says.  I can't even process it.

I can't either.  The names of dead autistic and disabled children cling to my memory, carved deeper than in any tombstone.  There's a pattern - the fathers and stepfathers go to prison, the mothers walk free, praised as devoted parents.  There's Peter Eitzen and Jason Dawes and Levai Bonnar and Julian and Shellay Ward and Kyla Puhle and only three of those parents are spending time in prison.  The rest were not convicted or were given suspended sentences, despite stabbing and poisoning and starving or suffocating their children.  The decisions of the juries and the commentary by the public is almost more horrifying than the crimes themselves.

Glenda finishes the presser and we travel together to meet with a small group of MPs in a conference room for a briefing about why we think it's important to reject the Bill.  There are perhaps seven attendees - our numbers are matched.  And one after another, we tell them our stories - our personal stories, the stories of others.  We carefully outline the reasons that we should not die and why this legislation must not be enacted.

The stories are horrendous.  Naomi tells the group that she once traded her shoes for care so that she could be ventilated at night - she needs oxygen to breathe.  They were ugg boots, she says.  Brand new.  Jax Jackie Brown, a disabled and queer feminist, tells them about Jerika Bolen, a fourteen year old queer black girl with spinal muscular atrophy.  Like many other marginalised fourteen year olds, she wanted to die.  Unlike other fourteen year olds, her mother held a fundraiser for her 'last dance', a farewell ball before she ended her own life.  Her grandmother called Jerika 'unselfish' for making the decision, and thousands of people donated to the fundraiser or attended the ball.  Jerika died a few weeks later after being supported to take active steps to end her life.

She had the same type of disability as sixty year old Glenda.
I grew up waiting to die, Glenda says.  My sister died at a very early age of the same condition.  The doctors said I was going to die - my parents thought I was going to die.  It took me a whole lifetime of waiting to die until I realised that I could live.  
We read or speak our statements, trying to be dispassionate, trying to break down a lifetime of complexity into easy to understand concepts.  We're worth as much as you are, we tell them.  We live in crisis and people are afraid of disability.  They think we are better off dead, that disability is a fate worse than death.  We carefully explain the issues and tell our awful stories and watch them struggle to understand.

By the time we are finished, one woman is openly crying.  The others thank us as we leave the room.

A colleague rings and tells us that Andrew Denton is outside - he's a much admired public figure who has been out campaigning for the right for us to die for weeks now.

We race down the corridor and go outside.  There's a lonely wheelchair user, one of the pro euthanasia camp, who has been summoned to attend.  He's wearing ripples, desert boots, and he smiles at us when we get there.  He's a nice bloke.  We all know each other in the disability sector.  We hold the same diversity of views about this issue as the rest of the population, but the issues are conflated with the complexities of being a marginalised and oppressed minority.

Denton has many cameras pushed into his face and is earnestly explaining the Go Gentle assisted suicide campaign to journalists.  Most of us are conflicted - Denton is a compassionate and talented comedian and interviewer, and we're caught between helpless fangirling and a rising and ironic desire to kill.  I wheel up to him and he catches my eye from the corner of his.

Hello, I say.  You're the guy who wants to kill us, right?

Denton doesn't miss a beat.  He is charming and articulate and successfully fobs us off to attend another appointment, but insists that he wants to hear us out - we arrange coffee across the road at our hotel in an hour.

When he leaves, the cameras turn back to us.  We're pretty confident that the loud voices of the articulate public figures will drown our own in the media, but we speak anyway.

The news is rolling in now about the murdered family.  There's all kinds of speculation about the way that they died - there were no signs of violence, police say.  People speculate that they were poisoned.  There is great emphasis on the death of the family's pet dog, and interviews with the neighbours.
 We're trying not to deal with this just yet - there's still tomorrow.  When this kind of thing happens, the disability and autistic communities join together to try and combat ableist and stigmatising commentary and mitigate damage for those who are already traumatised by the tragedy itself.  It takes its toll. 
It's hard to listen to people talking about why it's okay to kill you.  It's personal, you see.

And eventually, as promised, Denton turns up.  By then it's just me and Naomi Clarke and Kelly Cox, a disabled activist from Ballina, NSW.  Kelly has fascio scapular humeral dystrophy, which, like my disability, is degenerative and often 'life limiting'.  Under the South Australian legislation, we are both eligible to die.

It's an interesting discussion.  Denton is warm and compassionate and funny and intensely interested in gathering information of a personal nature, which is expected - he's a story teller.  He's attended the NDIS session earlier today and is inquisitive about supports for disabled people in Australia.  We get the impression that it's a new area for him, but we have a robust and frank discussion over two hours which we wished someone from the pro euthanasia camp had had with disabled people perhaps two years ago.  And there's that niggling thought at the back of our minds that he's perhaps just information gathering, amassing evidence to counteract future arguments.  He is a skilled interviewer and he didn't climb the media food chain by luck.

We talk about some issues which he might not have considered.  The fact that many of us are far cheaper to kill than to keep alive.  A colleague's annual funding cost is $47,000 per month - he is a ventilator assisted quadriplegic.  He's a productive employee and a magnificent human being, but the state pays for his care - the same people who are debating this legislation.  Other issues, like what it looks like to be unsupported, and that abuse or neglect are rarely recorded on our death certificates, that our deaths are often not mourned but are regarded as a 'release' or 'blessing'.

None of us are particularly kind.  Dark humour abounds - we congratulate Naomi on being the first person of the three of us who would be able to be legally killed off under the legislation because she lives in South Australia.  Denton looks slightly shocked and Naomi leans over and gently invites him to her funeral.  We point out that being given the right to die before being given the supports and right to live a good life is not really a choice.  It's a light approach to the most deadly of subjects.
Denton argues the terminology - it isn't about suicide, it isn't about the right to die, he says.  It was about giving people a hand to avoid intolerable suffering.  We pointed out the type of intolerable suffering that affected us which is often not caused solely by our disabilities, and he had no answers.  There was no middle ground, because there is no middle ground in an unwinnable argument.  He was not ever going to change his argument.  We are unable to change ours.  
During the conversation, Denton didn't once refer to the campaign name - Go Gentle.  As a lover of Dylan Thomas, I'd been incredibly affronted that the name of this poem had been appropriated - Thomas was a disabled man and his message was to his dying father, who he encouraged not to die or 'go gentle' into the night, but to 'rage, rage against the dying of the light'.  Like Thomas and Denton, I'd watched my parent die.  But unlike Denton, I have skin in the game.

Why not everyone?  I asked.  If it's about helping people to die, why not make it accessible to everyone?  Silent Witness star and Not Dead Yet campaigner Liz Carr uses the example of a person on a bridge, ready to jump.  Do you help them jump, or extend your hand to save them?  she asks.  Would you do a different thing if they were disabled?  And if you would, should you not ask yourself why?

When confronted with the question of why everyone shouldn't go gently off that bridge, Denton is momentarily lost for words.


It is a respectful conversation and Denton was more generous than we expected.  I remind Denton of his interview with my beautiful friend, Melissa Noonan, an amputee who he'd interviewed about her organisation some years ago.  I ask if he remembers the other interviewee, a self created amputee who had BIID.  Of course, he says.

He's dead now, I tell him.  Denton looks shocked.  How?  Suicide, they say, I tell him.  I don't know why.  But it is tough being disabled, especially when you experience stigma.  Add that to the fight for supports and services and it's a recipe for 'intolerable suffering'.

I tell him about the death of my mother, who had ovarian and cervical and breast and bone cancer.  My aunt, who had breast cancer, another aunt, who had vulva cancer.  She had most of her vagina removed, from pubis to anus, and joked with us that her bike riding days were over.  All dead, and a third aunt with a fist sized tumour excised from her chest wall.  We have the BRCA2 gene, a condition that affects some European families of Jewish descent.

I tell him that my mother didn't want chemo because she remembered her mother screaming and dying of cancer in an upstairs room like a dirty secret.  We talk about his father a little, but that was the beginning of his journey, he says, and shuts that conversation down quickly.  Regardless, I feel immense compassion for him.  I cannot imagine how I would feel if my mother had not 'gone gently into the night' naturally after a long and fierce battle.  She had good palliative care, reported no pain and died naturally as we watched her body run down and stop ticking.

We finish the meeting on a light note.  He lies by our feet, his head inches from Kelly's metal footrest, pretending to be dead.  But I look at the face of this man who I've admired and who I like so much and I'm reminded that he might be the author of our deaths.  I think of the Nazi T4 program and I am reminded that hundreds of thousands of disabled people died in the gas chambers at the hands of a mild mannered little man with spectacles.

As I leave my hotel, I read that the autistic children who have died have been gassed by a parent or parent who have set up an elaborate gas chamber in their home.

Later, in the taxi, I read an apologist article by a parent who tells us that she and her husband rationally discussed the murder of their three children, who have a rare degenerative disability, and tells the world that we should 'not judge'.

Personal?  Damn right it's personal.
We are at the cusp of the full roll out of the NDIS, which is already in danger in some states of being reduced or capped.  People are still living in crisis.  We are still regarded as being better off dead.  
As Kelly and I leave Adelaide, we hear that the vote has been delayed.  Perhaps we made more of an impact than we realised.  As I get on a plane, I hear that Denton has contacted Adelaide's most famous disabled man to ask him to make a video about his anti euthanasia stance.

I feel more compassion for Quentin Kenihan than I do Denton.  He's been wildly exploited at the hands of media before, throughout his entire life.  Like Denton, he's a talented interviewer and a funny guy, but he's had to fight for every opportunity to become an actor and media personality.  And without any contact  or discussion with other disabled people, Quentin says the same thing as we do - 'living is different from existing', he says.  Our views are not far apart at all.  I'm reminded of the very recent advocacy that Quentin did to raise awareness about lack of support when he spent the night in his wheelchair last year.  Like Stella Young, who also had osteogenesis imperfecta, he's battled the medical system throughout his entire life.
Stella famously said that just before going into an operating theatre, a nurse once asked her how old she was.  When Stella replied that she was 32, the nurse exclaimed that she was 'doing very well!'  Stella was horrified that she thought that at 32, Stella had had a 'good innings' and wondered what the implications might be for her should she require resuscitation. 
Like other disabled people, I do not know what will happen from here.  I encourage legislators to put their personal bias aside - whichever side of the fence they happen to be on - and look at the facts.  This legislation is not good legislation.  Laws are made to keep people safe.  If you want to make laws that affect disabled people, make laws to help us live - to help us be contributing and productive citizens of this country who can live on the same basis as other Australians.

Watch the videos below, talk to disabled people not only about what their views are on euthanasia but about what their lives look like now.  And think about this carefully and responsibly, because our lives are, literally, in your hands.

Video presentations to SA MPs, 18.10.2016. 

Jax Jacki Brown (Vic)
Naomi Clarke (SA)
Katharine Annear (SA)
Glenda Lee (SA)
Sam Connor (WA)
Kelly Cox (NSW)



Image descriptions - top, five women sit and stand and look at a camera.  They are not smiling.  Four are wheelchair users.  Bottom - a tattooed arm bearing the words, 'rage, rage against the dying of the light'.