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'. 

Monday, September 26, 2016

An Open Letter to Colleen Hartland, Australian Greens




Two years ago, I sat with my mother while she died. 

She’d been dying a long time.  Our family is touched with what we call the ‘gypsy curse’, the BRCA2 gene mutation which affects about one of every forty individuals with Ashkenazi Jewish ancestry. 

Lots of our family members have died – most of them, horribly.  My aunt sat with her mother as she died and she told me that she remembered her screaming upstairs, her body encased in plaster as the cancer spread from her breast and raged through her body.  Upstairs, like a dirty secret, she said. 

My mother sat with that same aunt.  She took a long time to die, too.  My mother and a second aunt died within months of each other – my aunt from vulva cancer that had metastasised from her breast, my mother from bone cancer.  It followed years and years of surgeries, mastectomies, one after the other, a hysterectomy, treatment and surgeries and medication until finally when I told her that she was dying, she sat up with a sigh of relief and said, ‘Oh, good.’

Like every other Australian, I think that we should be able to die pain free, with dignity. 

Unlike some other Australians, I can’t support assisted suicide legislation. 

The reason?  I am a disabled woman with a degenerative disability. 

The news that the Greens will introduce an assisted suicide bill has been welcomed by many members of the community, including my own.  Like all communities, the disability community is divided on the subject of how to die.  But for many of us, the proposal is targeted directly at us.  

Degenerative disabilities are often conflated with terminal illness so seamlessly and ingeniously by the media that our deaths are seen as inevitable and desirable.  Popular fiction romanticises our deaths and paints disability as a tragedy.  The idea of our ‘suffering’ is based on the perspective of non-disabled people, as are ideas about our ‘quality of life’. 

I listen to people talking carefully about safeguarding and the authority of doctors and I am terrified – not just for myself, but for the people in my community.  You might not understand that, but that is because you do not know what we know.  For us, this is personal.  

This is why I’m afraid. 

In February, a man in our community with muscular dystrophy woke up from routine surgery with a DNR band around his wrist – despite never having ordered it and never writing an Advance Care Directive. 

In June, we joined with Australian and international protestors and protested the movie ‘Me Before You’ at a cinema in Perth.  The film is about a quadriplegic who kills himself at a Swiss suicide clinic, despite having millions of dollars, a supportive family, the love of Emilia Clarke and a castle and jet.  The message is that the lives of disabled people are not worth living, that you’re better off dead than disabled.  I took a prop tin that said ‘Send me to a Swiss Suicide Clinic’ and jokingly shook it at the nearest able bodied person – half an hour later, I was no longer grinning.  Not one single patron asked me why I wanted to die – not a single person asked if I was okay.  Not one person refused.  Some people told me that they understood that I might want to die, because it would be terrible being a wheelchair user, and that it was ‘my choice’.  And at the end of the night we had raised over a hundred dollars, which we donated to a suicide bereavement fund. 

In July, a Japanese man, Satoshi Uematsu, broke into a facility for the disabled in a small town near Tokyo and stabbed 19 people to death whilst they slept.  25 others were wounded.  Uematsu had written a letter to the Japanese Parliament a month before, saying that he envisioned a world where a person with multiple disabilities can be euthanised with permission from their family members.  The massacre is Japan’s biggest mass killing since World War II, but it raised barely a ripple amongst mainstream media.  There were no changes to people’s profile pictures, no hashtag.  The victims remain unnamed. 

In August, I attended the Melbourne ABC studios with other activists to speak with Peter Singer, who believes that parents should have the choice to legally euthanise their disabled infants.  His views are that parents and doctors should be able to ‘take active steps to end a baby’s life swiftly and humanely’.   

Activist Kath Duncan asked if his views were not dog whistling violence to people like Uematsu and Singer vehemently denied that idea.  And on the way out, he stopped to chat.  I told him that I agreed with the late Harriet McBryde Johnson, who also had a degenerative disability – my problem is that Singer thinks that it would have been better if I was not born at all.  His response was chilling – if you’ve read that essay, he said, then you know my views.  And then he moved on to a polite conversation about how long he was in Australia and how he would be visiting with his sister.  

Last week, I wrote a paper about hate crimes against disabled people and how our murders often go unpunished.  I wrote about Kyla Puhle, whose mother, Angela, walked free from a South Australian court after pleading guilty to starving her to death.  Peter Eitzen, stabbed to death by his mother Beverley.  Jason Dawes, who was suffocated by his mother – she walked free in to a paid interview with Ray Martin.  There were no penalties or jail time and the rhetoric around the deaths of disabled children is often the language of ‘burden’ or ‘mercy killing’. 

And four days ago, disabled people mourned the death of Jerika Bolen, a fourteen year old teen with spinal muscular atrophy who died in hospice after requesting help to end her life.  Her mother held a fundraiser to support her dream of a ‘last dance’ prom and her request to die was praised by her grandmother as ‘unselfish’.  The media used words such as ‘brave’ and ‘inspirational’.  And few people asked the questions that most others would ask of the death of a non-disabled teenager, about pain management, medical care, availability of counselling.  Instead, they threw a party and watched her die. 

All those things have happened to us within a few short months.  Each event has reinforced the message that our lives are not worth living.  Blow by blow, one after the other.  You can imagine the effect this has on the psyche of a disabled person - for me, it's like the sound of a gold coin donation dropping into a charity tin rattled for the purposes of hastening my demise.  

I have thought about this year a lot.  I wish that my friend Erik Leipoldt was here – as a Dutch born quadriplegic and academic who held strong views about assisted suicide, he would lay out the issues with a conciseness that I could never hope to emulate.  He isn’t, though.  He died of bladder cancer a few years ago.  But his words ring as true as they did when he was alive, and in the absence of a loud disability voice around the perception of our ‘intolerable suffering’, I will repeat his words from 2011, written as a euthanasia bill was put before Parliament in South Australia –

– “It is hard to argue that each of us possesses equal human worth to anyone else, when society still widely views us as inferior. Notably, government itself has styled this state of affair as one of social apartheid.

– “It is hard to argue because many of those things that we live with daily involve the sort of intimate care and support that many euthanasia proponents try to escape.

– “We don’t experience indignity when receiving good support. Euthanasia proponents cannot conceive of that.

– “It is hard to be heard when our perceived ‘quality of life’ is painted as unbearable, while we want to live life.

– “It is hard to be heard when your disability involves cognitive impairment, isolation and marginalisation, especially while we know that euthanasia supporters want to do away with such experiences of life by ending it.

– “It is hard to argue as, when we argue for the fair share of control, self-determination or autonomy that society withholds from us in trying to live our lives, euthanasia proponents use exactly those points in arguing for a right to die which, in our case, might become an obligation.

– “It is hard to be heard when disability advocacy has been unsupported, its funding slashed by the same government that might now sanction killing for reason of ‘intolerable ‘suffering.’

Our voices are smaller than the rest of the Australian population.  Erik was right. 

Non-disabled people make value judgements about the quality of our lives.  We are unsupported and the worth of our lives is often counted in dollars.  Advocacy is being slashed across the nation, as we speak. Non-disabled people are terrified of disability. 

Activist Liz Carr says that legislation should not be passed because of fear – it should be passed to keep people safe.  That’s true, and there’s another truth that we’re not discussing.  Unless we pass laws to assist disabled people to live – to live a good life, with the support we need to be who we are - we can’t pass laws to assist them to die.  

I write to you, Colleen, to Premier Daniel Andrews and other decision makers and ask that you shift your focus to the population most at risk, the disability community.  

I ask that you make a commitment to assist us to live with dignity before turning your efforts to ways to help us die.


Tuesday, September 6, 2016

We’re Not Funded To Do That

In the disability sector, we’ve long since struggled with the issues of violence, neglect and abuse.

Traditional violence prevention and response services don’t do disability well.  If you’re white, non disabled and living in a metropolitan area, you have a reasonable chance of accessing vital frontline services.  But if you don’t fit that profile, you’re likely to be left – sometimes literally – out in the cold.

Disabled people who are experiencing violence and abuse often hear ‘we’re not funded to do that’. 

We hear it from the disability service providers, whose core business is to care and support, not send victims or survivors of violence on endless referral roundabouts or to inaccessible dead ends. 
We hear it from the underfunded refuges and domestic and violence services, who deal with an endless queue of non disabled women and don’t believe that disabled people are their business. 
It’s long been a barrier to disabled people, especially those who are living in institutional settings and those whose perpetrators might not fit the narrative around ‘intimate partners’ or male perpetrators.  We don’t fit the mould, and so we’re excluded.
But now that tired old catch cry is increasingly less relevant.  With the advent of the National Disability Insurance Scheme, disabled people can access their own supports.  Your refuge might be inaccessible to wheelchair users, but disabled women can now access external care and support if they are being abused by a caregiver.  For the first time, there are real possibilities for disabled women (and men) escaping violence.  So – where are the gaps?
There are many. 
Like Aboriginal people, sex workers and trans women, we don’t necessarily fit into a neat little box labeled ‘gendered, intimate partner violence’.  We’re different.  The domestic violence sector recognised this years ago after much lobbying by indigenous groups, and changed their language to include family violence.  Still, family violence is not well understood when it is placed within a disability context.  Nor is the idea that ‘domestic violence’ may occur within a variety of settings for disabled people, including those who live in institutions and group homes.
To understand the types of violence we experience, you need to look at the experiences of disabled people themselves.
Take Kyla Puhle, for example.  She was killed by her parents, who slowly starved her to death whilst they attended the school that they both worked at.  Kyla had been withdrawn from her day program prior to her death, and the family had many hours of respite available to them.  Kyla was deprived of food and hydration, left at home in a beanbag.  Her father shot himself upon being arrested, and her mother walked free on a suspended sentence.
There was Peta Doig, whose home was Graylands Hospital, a psychiatric hospital where she’d been institutionalised for decades before her death in 2013.  The Coroner, who chronicled her death, said that she was ‘vulnerable to sexual exploitation by other patients’ – she’d been assaulted so many times during her 58 years that she could no longer bear anyone touching her.  Not even to examine her – she died in agony, banging her head repeatedly, until her heart stopped.
And then there are the boys, usually autistic or intellectually disabled, who upset the gendered and intimate partner violence narrative completely. 
They are murdered in droves by family members – sixteen year old Peter Eitzen and ten year old Jason Dawes were stabbed and suffocated by their parents, Mark* and Thomas* were bashed to death by their stepfathers. 
Eleven year old Matthew* froze to death in a garden shed, bound to the chair where he slept most nights by packing tape and ratchet straps.  His stepfather rubbed his face into his faeces before putting him in a cold shower and leaving him in the shed in freezing weather – his mother listened to his death on a baby monitor from her warm bed. 

There are literally hundreds of accounts of violence and abuse against disabled people, many painstakingly collected by a Senate Committee who handed down an ‘urgent’ report into disability violence late last year. 
The report, which laid out a series of recommendations including the need for a Royal Commission, has been steadfastedly ignored by the Liberal government for over ten months – the same government who authorised a Royal Commission into the abhorrent practices of Don Dale within a scant twelve hours. 
Without a public outcry, it seems, there’s no need for action. 
For all of the people listed above and thousands more, there was and is no clear pathway to safety. 

'We’re not funded to do that'.  Our language isn’t even the same.  The domestic and family violence sector speaks of domestic and family violence and prevention and response whilst the disability sector talks about safeguarding and violence, neglect and abuse. 

Disclosure means something different when the person being abused doesn’t use spoken language, and disability sector workers aren’t trained to understand signs of trauma.  In the courtroom where Peter Kasatchkow admitted raping five disabled women in his taxi, the court heard evidence that the sexually assaulted women were medicated for ‘their behaviour’. 

The DFV sector doesn’t understand disability and the disability sector doesn’t understand responses to and prevention of violence.  Even the National Plan for the Prevention of Violence Against Women and their Children is flawed – children are regarded as appendages to beaten women, not individuals who are abused, tortured, forcibly sterilised and murdered in their own right.  The Plan would do nothing to protect Peter, Thomas, Mark, Matthew, Jason* or thousands of other disabled boys and girls.

So where to from here?  Well, the National Disability Insurance Scheme provides new opportunities for disabled people who are experiencing violence.
Those tired old excuses for dereliction of duty will no longer hold up – women are women, no matter where they live, regardless of whether their perpetrators are paid to ‘care’ for them. 

We’re just as raped, just as murdered, just as abused as non disabled women – yet our existence is erased, despite being more at risk of violence and abuse than any other minority group.

It’s about time we came together and listened to each other.  Disabled people have been segregated and isolated for so long that it’s become natural for policy areas to work in silos. 

It’s time to smash paradigms designed around non disabled white women, shift ableist attitudes and make sure we’re accommodated on the same playing field as our non disabled peers. 
We're your business.  Whether you like it or not. 



*Not his real name.  Courts in NSW prevent publication of the names of disabled children who are victims of violence

We’re Not Funded To Do That

In the disability sector, we’ve long since struggled with the issues of violence, neglect and abuse.


Traditional violence prevention and response services don’t do disability well.  If you’re white, non disabled and living in a metropolitan area, you have a reasonable chance of accessing vital frontline services.  But if you don’t fit that profile, you’re likely to be left – sometimes literally – out in the cold.


Disabled people who are experiencing violence and abuse often hear ‘we’re not funded to do that’. 

We hear it from the disability service providers, whose core business is to care and support, not send victims or survivors of violence on endless referral roundabouts or to inaccessible dead ends. 

We hear it from the underfunded refuges and domestic and violence services, who deal with an endless queue of non disabled women and don’t believe that disabled people are their business. 

It’s long been a barrier to disabled people, especially those who are living in institutional settings and those whose perpetrators might not fit the narrative around ‘intimate partners’ or male perpetrators.  We don’t fit the mould, and so we’re excluded.

But now that tired old catch cry is increasingly less relevant.  With the advent of the National Disability Insurance Scheme, disabled people can access their own supports.  Your refuge might be inaccessible to wheelchair users, but disabled women can now access external care and support if they are being abused by a caregiver.  For the first time, there are real possibilities for disabled women (and men) escaping violence.  So – where are the gaps?

There are many. 

Like Aboriginal people, sex workers and trans women, we don’t necessarily fit into a neat little box labeled ‘gendered, intimate partner violence’.  We’re different.  The domestic violence sector recognised this years ago after much lobbying by indigenous groups, and changed their language to include family violence.  Still, family violence is not well understood when it is placed within a disability context.  Nor is the idea that ‘domestic violence’ may occur within a variety of settings for disabled people, including those who live in institutions and group homes.

To understand the types of violence we experience, you need to look at the experiences of disabled people themselves.

Take Kyla Puhle, for example.  She was killed by her parents, who slowly starved her to death whilst they attended the school that they both worked at.  Kyla had been withdrawn from her day program prior to her death, and the family had many hours of respite available to them.  Still, Kyla was deprived of food and hydration, left at home in a beanbag.  Her father shot himself upon being arrested, and her mother walked free on a suspended sentence.

There’s Peta Doig, whose home was Graylands Hospital, a psychiatric hospital where she’d been institutionalised for decades before her death in 2013.  The Coroner, who chronicled her death, said that she was ‘vulnerable to sexual exploitation by other patients’ – she’d been assaulted so many times during her 58 years that she could no longer bear anyone touching her.  Not even to examine her – she died in agony, banging her head repeatedly, until her heart stopped.

And then there are the boys, usually autistic or intellectually disabled, who upset the gendered and intimate partner violence narrative completely. 
They are murdered in droves by family members – sixteen year old Peter Eitzen and ten year old Jason Dawes were stabbed and suffocated by their parents, Mark* and Thomas* were bashed to death by their stepfathers. 
Eleven year old Matthew* froze to death in a garden shed, bound to the chair where he slept most nights by packing tape and ratchet straps.  His stepfather rubbed his face into his faeces before putting him in a cold shower and leaving him in the shed in freezing weather – his mother listened to his death on a baby monitor from her warm bed. 

There are literally hundreds of accounts of violence and abuse against disabled people, many painstakingly collected by a Senate Committee who handed down an ‘urgent’ report into disability violence late last year. 
The report, which laid out a series of recommendations including the need for a Royal Commission, has been steadfastedly ignored by the Liberal government for over ten months – the same government who authorised a Royal Commission into the abhorrent practices of Don Dale within a scant twelve hours. 
Without a public outcry, it seems, there’s no need for action. 
For all of the people listed above and thousands more, there was and is no clear pathway to safety. 

'We’re not funded to do that'.  Our language isn’t even the same.  The domestic and family violence sector speaks of domestic and family violence and prevention and response whilst the disability sector talks about safeguarding and violence, neglect and abuse. 

Disclosure means something different when the person being abused doesn’t use spoken language, and disability sector workers aren’t trained to understand signs of trauma.  In the courtroom where Peter Kasatchkow admitted raping five disabled women in his taxi, the court heard evidence that the sexually assaulted women were medicated for ‘their behaviour’. 

The DFV sector doesn’t understand disability and the disability sector doesn’t understand responses to and prevention of violence.  Even the National Plan for the Prevention of Violence Against Women and their Children is flawed – children are regarded as appendages to beaten women, not individuals who are abused, tortured, forcibly sterilised and murdered in their own right.  The Plan would do nothing to protect Peter, Thomas, Mark, Matthew, Jason* or thousands of other disabled boys and girls.

So where to from here?  Well, the National Disability Insurance Scheme provides new opportunities for disabled people who are experiencing violence.
Those tired old excuses for dereliction of duty will no longer hold up – women are women, no matter where they live, regardless of whether their perpetrators are paid to ‘care’ for them. 

We’re just as raped, just as murdered, just as abused as non disabled women – yet our existence is erased, despite being more at risk of violence and abuse than any other minority group.

It’s about time we came together and listened to each other.  Disabled people have been segregated and isolated for so long that it’s become natural for policy areas to work in silos. 

It’s time to smash paradigms designed around non disabled white women, shift ableist attitudes and make sure we’re accommodated on the same playing field as our non disabled peers. 
We're your business.  Whether you like it or not. 



*Not his real name.  Courts in NSW prevent publication of the names of disabled children who are victims of violence