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'. 

6 comments:

  1. This is freakin awesome......thankyou thankyou thankyou!!!!

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  2. This was tried on my son who was sick in Rockhampton Base Hospital. He survived that, but the Docter put a DNR on him against our will.
    He now has a Health Directive as he knows what he wants, being non verbal made it difficult.
    Would a Health Directive help in these situations?

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  3. Maybe when you engage in a debate next time tone down the hyperbole. I mean this constructively not horribly.
    But comparing Denton to Hitler? A bit much. Australia currently lacks the social, cultural and economic conditions that led to the Holocaust and Denton intentions are very different to Hitler's. If Australia ever went down the Holocaust path then making euthanasia legal isn't a necessary precedent and there's no reason to think that euthanasia will lead to mass killings.

    Secondly, those parents who went free were shown compassion - that's a good thing. Do you think though that maybe if they had the option to ask for their child to be assisted to die humanely that maybe then those kids would have had the chance to have their cases looked at by independent bodies who would then be able to make the decision of whether it would be in their best interest to die or to be put into care away from the parents that obviously couldn't cope? Looking after disabled children is extremely hard no matter how much support you have. Watching your child suffer must be unbearable.

    There doesn't need to be dichotomy of either assisted dying or assisted living either - we can campaign for and have and both. Suggesting we can't is majorly defeatist and let's down a lot of people who are suffering and would like to have the opportunity to die peacefully.

    Might get more sympathy and attention if you ask for a register that allows people to opt out of the assisted dying scheme to safeguard those who don't want to be pushed into it, or some other safeguard that you choose. But don't hold others ransom to your fear.

    We are a country capable of working out complex legislation that protects everyone. But bringing over-emotional arguments and invoking Hitler with absolutely no justification is the fastest way to get your opinions discarded. Especially when comparing the deaths of a really troubled family just because they used gas. A bit of empathy for others might take you a bit further.

    I wish you the best of luck in the future:)

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  4. I thought l had this worked out...Right to Die sounded eminently reasonable. Now Right to Live sits more comfortably. Go Gentle...what a crock of shit! Go Hard and suck every little bit out of life that you can. Be Blessed and Be A Blessing. Not a pious cliche but a call to ARMS. I've learned that those with disabilities can teach us as much as the " normal" about how to live a life worth living. Anthony

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  5. I thought l had this worked out...Right to Die sounded eminently reasonable. Now Right to Live sits more comfortably. Go Gentle...what a crock of shit! Go Hard and suck every little bit out of life that you can. Be Blessed and Be A Blessing. Not a pious cliche but a call to ARMS. I've learned that those with disabilities can teach us as much as the " normal" about how to live a life worth living. Anthony

    ReplyDelete