Friday, December 11, 2015


There she is, that mouthy girl. Fines owing. And look at her – bashed, not looking good. She’ll probably be better off in lock-up, she’ll get a feed.

5pm, August 2.

Click on the handcuffs, cold against her dark skin.

She’s another number today. Three grand’s worth of driving fines, and jeez she’s a difficult one. Get her health check done, she’s off her head, probably on drugs. Or just behaving like they do, you know, a lot of them have behavioural issues. You gotta be firm with them.

Fines, the last thing on her mind, between the beatings and the drugs and the fight for survival. And the lock-up door slams shut.

Typing up the file notes. She appears to be suffering withdrawals from drug use, not coping well with being in custody.

On the mattress, her burning skin hot against the blanket. Every breath drawn moves her fractured ribs, burns her lungs.

8am, 3 August.

Into the health campus for the second time, bright white lights. Pointing to ribs, pain is there. Pain is there. Her lips move and she makes words which don’t make sense through the fever and the pain and the fear.

No temperature taken, no x-ray carried out, no heartrate recorded. It is beating at 126 beats a minute against her fractured ribs. She is sent back to lock-up, two Panadol and a paper bag to breath into. ‘Behavioural gain’, they write.

Her heart beating like a trapped bird against her chest wall. Sobbing. Please take me back to the hospital. Please help.

She’s probably faking, you know what those young women are like. Attention seeking behaviour. Three times back to the hospital, yeah, well, we gotta do it. Pain in the arse.

7am, 4 August.

She can’t feel her legs. Hands are going blue, mouth is numb, what does that mean? The officer slips when she tries to pull her up by one arm, she falls and hits her head.

Vomiting, falling backwards, hitting her head on the concrete. The CCTV records it, faithfully. The officers do not.

You checked her? Yeah, she’s going to have to go back. Jesus. Just get the Tojo ready, we can go down in half an hour.

The tape whirs. Wirla, the word for a bad feeling in the gut, the kind of feeling you get when you see a person and know something isn’t right.

12.33pm, 4 August.

Fall back against the mattress when they try to lift her. There are no wheelchairs, stretchers. They drag her along the floor, load her up.

She’s moaning, we had to bloody drag her in here. Seriously. By the arms and legs. Moaning. She’s putting it on.

Dragging. Hands on burning slim ankles, grasping wrists roughly. Her head hangs back and her dark hair makes wings against the air. The doors slam shut. 500 metres. She cries out. Oh, shut up, the officer says.

She’s putting it on, pretending to faint. Get a wheelchair, put her in that.

And the blue sky dims to dark.

She’s faking it. Isn’t she? Oh, shit. Oh, shit.

1.39pm, 4 August.


With other women and anti-violence campaigners, we call for accountability and urgent changes to the systems that allow women to die in prisons, including systems that allow institutionalised racism, sexism and ableism to dictate levels of ‘care’ and access to justice.

We call upon the State Government to urgently review the recommendations of the Royal Commission into Aboriginal Deaths in Custody, now over 25 years old, and implement safeguarding measures, including strategies to prevent domestic violence victims being locked up for non-payment of fines.

We call upon the Federal Government to ensure that Aboriginal women, women with disability, trans women and women from other groups who are not traditionally included in government anti-violence policy to be strongly included in the National Plan for the Elimination of Violence against Women and their Children, with a specific focus on eliminating institutional violence and neglect and oppression based on ingrained cultural attitudes.

We call upon women's groups, anti-violence campaigners and feminist groups to recognise the intersectional issues that women from those groups face and to highlight the multiple ways we are marginalised and the societal conditions that oppress us and prevent us from achieving clear pathways to safety from domestic violence.

We call upon Government to ensure that there is accountability for deaths in care and deaths in custody, including prison sentences and fines for failure of duty of care and to consider implementing legislation that will ensure clear sanctions, expectations and obligations upon those who have responsibility in the same way OHS legislation works.

We offer our solidarity to the family of Ms Dhu in their fight for justice and our respectful condolences for the loss of their beautiful girl.

Sunday, November 29, 2015

An Open Letter to Destroy the Joint – We’re Waiting

Dear Destroy the Joint

Last week, you told us that you apologised for excluding us from your page and from the ongoing conversation about violence against women.

This is what you said;

Dear Destroyers,

Let us begin with a belated and unreserved apology about the way we have handled the comment moderation in this instance. We acknowledge we can always be more inclusive. We are constantly discussing ways we can achieve this and no woman living with disability should be excluded from this page. Anyone who has been banned as a result of this will be unbanned. Please email so we can be thorough about this.

It has always been our mission to include everyone and Counting Dead Women includes all women who have been killed as a result of gendered violence.

We have left this post here, along with all the feedback so we could gain a better understanding of how the events have unfolded and how the way we have run the page may have contributed to it. We want to do the right thing by all women. For this reason, we will take a short break to reflect on how we can ensure no one feels excluded from this page. Women are diverse. We will continue to honour all women killed because of gendered violence in Australia.

We hear you and we need to time to reassess. You are the reason we exist. You have been very clear about what you think Destroy The Joint has done wrong. Thank you for your feedback. We needed it.

But since then, we haven’t heard a word from you. You’re not returning our calls nor talking about dead disabled women, despite the news that a Senate Inquiry recommended a Royal Commission into violence against people with disability and that the news has been full of items around violence and disability. You’ve broken up with us after a relationship we’ve never had.

Last Wednesday, three of our sisters, Senators Siewert, Moore and Lindgren, wore a dried white rose pinned to their jackets as they tabled the Inquiry report that called for a Royal Commission. The roses were dried after the Bolshy Divas, a disability activist group, lay a white rose on the table at the Senate hearing to mark the death of each name they called. You'd think the calling for a Royal Commission into the abuse and murders of dead disabled women would be enough for you to give us a call - but there hasn't been a word.

We think that a week has been long enough for you to ‘reassess’. We expected that you’d contact some of us – any of us – given the scores of articles that emerged about this issue, including this one by Katie Ellis in the Conversation, or perhaps even include us in a post about abuse and violence. But we are not present in your conversations.

What have you left out? Well, since we spoke to you last, these things have happened.

On White Ribbon Day, a poignant memorial was held in the heart of Sydney to remember dead disabled women, men and children who had died as a result of violence, abuse and neglect. The names of the dead were called, the names of the uncounted were recognised. This was the same event that you’d refused to acknowledge and you’d asked us to share it in a ‘disability activist space’.

Australia recognised that the abuse of people with disability was so widespread that it urgently needed a Royal Commission to investigate the abuse.

In Toronto, an article was published saying that a disabled couple were ‘allowed’ to keep their child. Jax Jackie Brown was one of the disabled women who talked about the intersectional issues around removal of children and how that intersects with marriage equality, because gendered stereotypes about what it means to be a mother contribute to the likelihood of children being removed from our care.

Senator Rachel Siewert published an opinion piece in the Guardian saying that disability abuse was a national shame.

Two women, Keran Howe and Julie Phillips, a disabled woman and a parent of a child with a disability, were awarded national awards for their advocacy work around violence prevention and awareness raising around students with disabilities.
This is what we’re talking about in the disability community.

Yesterday, as Kelly Cox and I were about to board a train in Sydney, a woman with a mental health condition was being beaten in a public space. She was dark skinned, and the passersby streamed past them both, like a river round a rock, even when she screamed for help. She had a black eye that her assailant had given her a few days earlier and we discovered that the man hitting her was less frightening to her than police, than being sectioned, than going to hospital. As the paramedic arrived, her eyes widened with fear. She was scared about files being created about her, in case she wanted to have more children, she said. When I asked if she had children, her eyes filled with tears.

He was her friend, she said. He was keeping her safe from other people, worse people, from prostitution, from rape, she said. Women like this woman are not often represented in conversations about domestic and family violence – she had a brain injury, her assailant told me, and bipolar disorder and schizophrenia. She lived a violent life and has no pathways to safety.

Her story was like a period to this week’s acts of exclusion. We are excluded because we are the wrong people – we are excluded from feminist spaces because we are disabled, trans women, women of colour, indigenous women, sex workers, intersex, queer or other. We women do not ask to be included by your group and other groups that represent feminist spaces – we demand it.

We’re not hard to find, nor to engage with. Now that you’ve had an opportunity to reflect on the ways disability politics are essential to feminist politics, we’re expecting a call.

Sam Connor -

Image description - a paper heart is stitched together after being torn. A needle and thread lies nearby.

Monday, November 23, 2015

On the Bus

It is so frustrating.

Destroy the Joint are counting dead women, mostly women who are killed by men.

Destroy the Narrative are counting dead men, only those who have been killed by women.

For both those groups, they are counting the people who have been killed 'this year'.

But for many people with disability, nobody is counting. Nobody knows when we are dead. The story of an Autistic boy who was killed by his mother and stepfather - he was bound to a chair, doused with cold water and put in a garden shed, where he died of hypothermia - only went to court this month, in 2015. He had died in 2011. Rebecca Lazarus, a woman murdered by her partner outside her group home in 2007, also went unnoticed, uncounted for over five years. On the 14 November 2012, 1960 days after Lazarus was brutally murdered, the Coroners Court of Victoria released its report, a “Finding Without Inquest”. Until then, nobody knew - and perhaps that was because nobody cared.

Our deaths 'must be for some other reason, it is not like other violence'. Last week, a feminist organisation suggested that the details of a memorial to commemorate the lives of dead disabled women, men and children should be placed on 'a disability activist page'.

We will never make change until our deaths are counted, until we are regarded as victims of violence in the same way others are regarded. That includes equal coverage and treatment by advocates of non violence, access to justice and access to services and supports.

In 1955, Rosa Parks created change for the black community by protesting exclusion and segregation on city buses. She refused to give up her seat to a white person when told to move to the designated 'coloured section'.

'People always say that I didn't give up my seat because I was tired, but that isn't true. I was not tired physically, or no more tired than I usually was at the end of a working day. I was not old, although some people have an image of me as being old then. I was forty-two. No, the only tired I was, was tired of giving in.' - Rosa Parks

We people with disability are not at the back of the bus. We are not even on the fucking bus.

The argument for addressing the pay gap is almost irrelevant for the thousands of disabled women and men who cannot get into employment because of employer attitudes. We do not fit into 'mainstream places' - we are more likely to be incarcerated than admitted to a hospital, and Australia ranks 29 of 29 OECD countries for poverty risk of people with a disability. 90% of women with intellectual disability report being sexually abused in their lifetime, and instead of this being a national emergency, we are excluded and segregated from supports, services, policy documents and frameworks and the wider conversation.

Tomorrow is White Ribbon Day, but it is also the day that we will hold the White Flower Memorial. We will join together in the reading of the names of those dead women, men and children with disability to express our solidarity for those lost to violence, anger at the perpetrators and determination to fight together against oppression, violence and the social conditions and power imbalances that have caused our deaths.

We also call upon decision makers to listen to the stories told to the Senate and the report about violence against people with disability which will be tabled tomorrow in Parliament.

We call upon all people who care about nonviolence and justice to bring about changes that will relegate acts of violence against people with disability to the past.

We call upon every person in Australia, including our disabled brothers and sisters, to speak up, tell our stories, and let the world know that violence against people with disability is unacceptable.

Let us start counting the uncounted and listen to their stories. And let us build a ramp to make that bus accessible, so that we can ride with other women, men and children, be granted equal rights and assert our place in the world.

Image descriptions: A black woman sits on a bus, her face turned slightly away. She is sitting at the front of the bus. Behind her sits a white man. Image 2: Two protesters sit in their wheelchairs in front of a bus holding protest signs.

Saturday, November 21, 2015

The Apartheid of Mainstream Feminism (or when is a woman not a woman?)

When is a woman not a woman? When she’s disabled, of course.

It’s been a sad week for women with disability who are battling for inclusion in feminist circles. But it’s nothing new.

In 2013, Stella Young wrote an article about ‘The Politics of Exclusion’, in which she recounted a story of her contact with Destroy the Joint, a feminist group who aims to make sure women are included in public participation.

Destroy the Joint had set up a website where people could take a pledge. It read, in part:

I want an Australia where girls and women, where men and boys, can take part in our society without enduring discrimination, sexism and violence.

I want an Australia where we respect each other; an Australia where no person experiences hate because of their gender, race, religion or sexuality.

And I will challenge anyone who uses sex, race, religion or sexual orientation to incite hatred or to demean or vilify any of us. I will not stand by and let others do so without speaking up.’

Stella thought that the omission of disability as a reason many people experience hate and exclusion is striking, so she raised it with the creators of the pledge. Disappointingly, they said, 'we can't include everything'.

It seems nothing has changed. Despite the fact that people with disability make up twenty percent of the population, and more than half of us are disabled women, it seems that we don’t rate a mention in the exclusionary world of mainstream feminism.

Next week, I will be at the White Flower Memorial with other board members of People with Disability Australia, where we will remember women, men and children who have died as a result of violence, neglect or abuse. There are hundreds of current stories about the abuse of disabled women – literally hundreds. Despite the fact that Destroy the Joint refused to include some women with disability who had died at the hands of others in their ‘Counting Dead Women’ project, I thought I’d ask them to share the White Flower Memorial event on their page. After all, we are also counting dead women. I received this (inboxed) response.

'Destroy the Joint
Hi Samantha, thanks so much for your message. This is obviously a very important issue to bring attention to. Can I suggest posting it to disability activism pages? That may be the best way to raise awareness. Unfortunately we won't be able to post this to our page as we have to stick to our remit closely, but we all wish you the best for raising awareness of this important cause. D49.’

I was confused. Aren’t dead disabled women – well, just women? When we’re murdered, we’re just as dead. I wrote back,

‘We're not trying to raise awareness. We are holding a memorial service for dead disabled women.’

I thought I would reword the message to focus more on the gendered nature of violence against women. Then I went to post it, and it would not post. Then Facebook sent me this message. Destroy the Joint had reported the above message as 'abusive'.

‘Your message couldn't be sent because it includes content that other people on Facebook have reported as abusive.
If you think you're seeing this by mistake, please let us know.'

I was blocked from further messaging.

Not just othering. Not just ignoring. Actual lateral violence by women against women, because somehow disability renders us genderless.

Counting dead women, unless you're disabled.

So much for the fucking sisterhood.

I was stunned. I went over to look at their page and find out what kind of information DtJ considered more important than the counting of dead disabled women. They’d just posted a lighthearted ‘Buzzfeed’ post, where women were asked to contribute their experience of #beingawoman.

The Tweets included lighthearted and serious statements from women, including the following –

Rachel Wenitsky @RachelWenitsky
We should probably stop applauding men for marrying accomplished women as if they adopted a blind one-legged rescue dog
Siobhan Thompson @vornietom
BRB, teaching a flock of parrots to say "what if that character was a woman?" And then releasing them in Hollywood
Lily Karlin ✔ @lilykarlin
Ladies, never show panty lines!!!!!! It breaks the illusion that your pants are actually your skin!!!!!

The comments were so far removed from some of our experiences that I decided to post some #beingawoman posts from a disability perspective, some personal, some about dead disabled women.

'My doctor told me to get a hysterectomy or change my tampon in my office because there was no accessible toilet nearby at my workplace #beingawoman'

'Peta Doig was raped thousands of times in her lifetime in a WA institution before dying screaming - the WA Government refused to segregate her from aggressive male clients #beingawoman'

'In 2011, it was reported that a major mental health service in Victoria had been covering up sexual assaults of its patients that that a 20 year old girl allegedly was sexually assaulted by a male nurse. She was told by staff not to tell anyone so it didn't become 'office gossip'. #beingawoman'

'Young women with intellectual disability are routinely sterilised without their consent because of the 'chance of rape' or because 'she may become distressed by the sight of blood'. This contravenes the Torture Convention #beingawoman'

Other women with disability joined in, including an Aboriginal woman with a disability.

'when i lodged a complaint against a taxi company for racism and all the drivers assumed i had been sexually assaulted because that happens to lots of disabled women. taxi rape #beingawoman’

'when people deny my sexuality because they think disabled people having sex is disgusting #beingawoman’

'When people deny my womanhood and treat me like a child #beingawoman’

In social media circles, we would call this ‘engagement’

But instead, we received this comment.

Destroy the Joint Destroyers, please note that as always, repetitive, circular and off topic comments will be hidden in line with our commenting guidelines. Repeat offenders will be banned. D25

We were banned and our comments were deleted.

Another disabled woman, Carole Robinson, a UK activist, made this comment,

'Hmmm...what would the reaction if the buzzfeed post had said '32 hilarious comments that only disabled women would understand'. Personally, I don't think that would get a mention here.'

Her comment was promptly deleted. She was banned.

Destroy the Joint felt the need to justify banning disabled women and silencing their voices.

'Regretfully, we did have to ban a couple of people who were repeatedly spamming this post and page with a large number of obvious half truths and distortions,’ they said.

‘Unfortunately, this meant their one main ontopic visitor post which was already seen by the page's large readership was automatically deleted too. But when we give a warning to stop spamming repetitive comments, it's a good idea to take notice. Sorry if any other Destroyers saw any of the other stuff. Feel free to carry on in the original spirit of the post! D25'

There we were. Other disabled women who posted something, anything, about disability and being excluded from discussions about feminism were promptly banned from commenting. Their comments were deleted.

Disabled abuse survivors also began posting on the wall in protest.

‘Three times I left and three times I was forced to return....forced by the agencies who were supposed to help me. Told the abuse was my fault and I should be grateful for the sacrifices my carer and his son gave up for me. And when I tried to complain about one of the dv agencies I ended up losing all supports and funding as the agency was affiliated with the ngo disability service provider I was under. Leaving me even worse off. And left much more traumatised as a result than I already was by the abuse at home.’

Dozens of messages from disabled women have been directed at Destroy The Joint – who have left a single ‘visitor’ post, neatly in the corner in the back room, mostly untouched. We’re allowed to have our space there, you see. Not over there at the desirable 'disability activist' space, but in the equivalent of a special school or a small congregate setting, where disabled women can remain unseen and unheard, excluded from the main conversation. No inclusion, but a respectful heartbeat of silence to allow ‘those people’ their space before going back to business as usual. Despite the murders, despite the abuse. Despite the fact that 90% of women with intellectual disability report being sexually abused in their lifetime.

We can count dead women, but not dead disabled women.

When we are murdered, it is not violence, because it may not be the type of violence you know and understand.

We are abused and murdered in places that you do not know about, in circumstances that you're not familiar with.

But there is this.

We are still women, and we are just as raped, just as dead.

Next week, at the White Flower Memorial in Sydney, we march. We will call the names for dead women and others with disability who have died as a result of violence, neglect and abuse, especially those in institutional settings. We will place white flowers in memory of those who have had their lives taken, whilst elsewhere, the Senate Inquiry into Violence, Neglect and Abuse against People with Disability is tabled.

We call upon all women – not just disabled women – to join us in expressing solidarity for the thousands of women with disability who are abused every day. We call upon you to express anger towards the perpetrators and at the social conditions that disempower us, including exclusion, segregation and apartheid. We call upon you to fight with all your sisters against oppression and violence.

We are disabled women. But we are still women.

Image description: A sign reads 'The divisional council of the Cape - White Area. By order Secretary. Die Afdelingraad van die kaap. Blanke Giebied'.

Tuesday, November 10, 2015

The Boy and the Bed

This week, police interviewed a mother of a 16 year old Autistic boy who was found chained to a bed. She was later released without charge, and her son was returned home.

And then it started. The media, the cameras and the comments on social media, many from members of the public who argued, ferociously, that although child abuse was 'never all right', the community should 'not judge'. Until you are this mother, a struggling Somalian migrant with five children, you cannot 'walk in her shoes'. You do not know what Autistic children are like, many of them declared - they can be violent, dangerous, and at least the boy would be safe chained to the bed.


In 2008, 16 year old Callista Springer died in a house fire after being chained to a bed in her home. She had tried to escape from the upstairs room, but the chains held her. Her parents were imprisoned, not for murder but for torture and child abuse - 18-50 years.

This was Callista.

But over in Australia, we are not having the same conversation. It appears that torture is not torture, abuse is not abuse, when it is perceived by the general public that there are 'extenuating circumstances'. Those circumstances, of course, being the fact that the child who was chained to the bed has a disability.

From Nicole Rogerson, the CEO of a not for profit parent organisation, Autism Awareness Australia - 'I'm not going to pretend like we don't undertand how these things occur'. Rogerson argues that compassion should be shown to the mother and that the 'situation is complex'.

Groups like Autistic Self Advocacy Network of Australia and New Zealand are horrified at the response. They say that abuse is 'never okay, never excusable'.

'It is a violation of the child’s rights. We needn’t live in a society where these abuses seem to be common place,' their press release says.

'The stigma surrounding autism has a profound impact on the way Autistic people are treated. This stigma leads to shame, shunning, abuse and even death. We along with all the organisations working toward upholding the rights of disabled people condemn this act and the society that allows these acts to continue to occur.'

In online groups, the discussion from the community is wildly divided. She was keeping him safe, many commentators said. You can't judge, because you're 'not in her shoes'. And then there were the speculations about his behaviour and the probability of violence and absconding and eventually the agreement that really, the mother had no choice other than to chain her child to the bed.

In other communities, we call this victim blaming.

We watch it happen when rape victim's sexual histories are dissected, when someone's socio-economic status is examined, when people are determined that poor lifestyle choices must somehow have contributed to the person's abuse. And although this child is Autistic and is behaving in ways that are natural for him to behave in, there's a persistent, othering narrative that the cause of the abuse is to be found within the child himself - despite the fact that there are thousands of Autistic children who are not routinely chained to furniture around Australia.

After a day of wading through this mire, my son asked me a simple question. 'Why did his mother chain him to the furniture?' he asked. Immured in discussions about lack of support and behavioural challenges, the automatic response trembled upon my lips. 'Because he was Autistic, and ran down the street naked,' I had been about to say. I caught myself, horrifed. My response was the ableist equivalent of those who said that rape and murder victim Jill Meagher had asked for it. Walking home from a pub at night, walking in a dark alley, wearing a short skirt, running down the street naked. It's all the same. There are no victims if there are no abusers.

Nicole Rogerson may not be entirely wrong. There is a dearth of supports and services in this country, and that is not entirely a separate discussion. But the decision to place the immediate focus on supporting the perpetrator rather than the victim is ableist, offensive and incredibly damaging. People with disability are entitled to the same human rights as others. And condemnation of abuse should not ever carry the disclaimer 'but'.

Image description: A young man is carried out of a house on a stretcher. His face is pixellated. Image two: Callista Springer

Friday, October 30, 2015

Do You Stand To Wipe?

Do you stand to wipe?

I blinked a little. Out of the blue, my charismatic 25 year old son was asking my friend this question, with all the charm that he could muster. The friend blushed. Of course not, she said, and my son carefully explained that he had asked hundreds of people this question, and the results were unexpected – almost half the group sat, the other half stood. And a few lonely souls put their foot on the toilet seat, meeting the others half way.

We’re not comfortable with sharing our personal habits, and it’s only people like my lad who can (almost) get away with asking questions like this. Curious about how this subject arose, I asked why he’d thought of conducting this slightly odd research – he’d told his friends he had fallen over in the toilet whilst drunk, in the act of wiping. But why were you standing? one friend asked. And thus the Great Standing or Sitting Debate was born.

It’s an amusing topic. Last night, I sat with some friends around a table and told them this story, to their great delight. The three wheelchair users, unsurprisingly, were sitters – only one young man confessed to his standing status. The conversation that ensued was hilarious – we talked about starting a support group for Standers, designed a logo and laughed about terms like ‘bowel divergent’.

And then something happened.

A young waitress came over to clean away our plates, and I asked her if she’d mind answering a personal question. Do you sit or stand to wipe? I asked. She blushed, stammered, and eventually said that this was far too personal, she did not want to disclose that information and actually, it was rude to ask someone very private information. She had her head down as she walked away.

I agree.

It was an interesting social experiment, because this what happens to disabled people every single day.

It begins with the inevitable question – how did you end up in a wheelchair? But the personal questions don’t stop there. We are often grilled over our private medical details, our sex lives, the intimate secrets which most people only reveal to their close friends, relatives or medical practitioners. Our stories are commodified so often for the use of others – generally for inspiration or tragedy porn – that the type of dignity and respect that others expect is unavailable to us.

Consider this.

One day, I delivered a workshop to a group of service providers. One man asked my friend, without me present, if I could ‘do a standing transfer’. I remarked that it was unusual to ask how the presenter went to the toilet.

One weekend, I went on a respite weekend with a group of carers. Within the first three hours, I had been asked how I had sex, why I used a wheelchair and what my life expectancy was. I had met only one of the women before.

One night, after telling another woman that I was married with children, I was asked if I had given birth vaginally, if ‘the father is still with me’ and if I’d ‘stopped having sex after becoming disabled’.

I wonder if the commodification of our stories – the type the able bodied population expects, the narrative about overcoming great odds, the stories of tragedy and inspiration, the story of the power of the human spirit to overcome – has led to the perception that we must be willing to reveal every single personal detail to casual passers-by. That our stories automatically belong to the able-bodied stranger. I wonder whether our willingness to share our experiences to educate and spread awareness have backfired on us, making us public property. And I wonder what kind of stories we should be sharing – or if we should be sharing our stories at all – to change that circumstance.

That young woman’s blush said it all. It was an inappropriate question to ask, because she was a stranger. Nobody has the right to ask you those questions, and nobody should be compelled to answer. Whether you’re able bodied, or disabled.

The irony is this. I have been asked how I have sex, when I will die, how I gave birth. But as a wheelchair user, nobody has ever asked me whether I sit or stand to wipe.

Monday, October 19, 2015

Virtually Non Existent.

I don’t exist.

Neither do many of my friends – specifically, those with disabilities.

I discovered this recently when playing the Sims, a ‘life simulation video game series’, developed by EA Maxis and published by Electronic Arts. It’s one of the best selling video games of all times – it has sold more than 200 million copies world wide.
There are fat Sims, black Sims, Sims with purple hair. You can tweak your Sim character until he is a morbidly obese black guy with a bad ass taste in goth fashion. You can add traits and characteristics to make your Sim charismatic, a good kisser, lucky – but you will never see one type of Sim in the land of the Sims.

Yep, that’s us. People with disability.

There are no blind Sims. There are no Deaf Sims. There are no wheelchair using Sims, and it is unlikely that you will be able to introduce learning disabilities or neurodiversity into the Sims’ basic makeup. When you google ‘disabled Sim’, YouTube will tell you all about how to unlock your phone with a PUK code. We just don’t exist.

Game designer Will Wright was inspired to create a ‘virtual doll house’, and that’s just what he did. He adapted his life experience from his own experience – a house on a street, with people who live in a certain way. No prayer mats, no ramps and certainly no disabled people. We’re presumably living in the institution or working at the sheltered workshop down the street.

But imagine how much richer, how much better, the Sims would be if there was a disability expansion pack. All of a sudden, your Sim can only get a job in a sheltered workshop if he has a learning disability. He has additional challenges – sometimes he needs to sleep in his electric wheelchair when his disability support worker doesn’t turn up. His budget just doesn’t stretch far enough, and his social circle is comprised of only people like him. He can’t go to other people’s parties if they have a staircase, or if their toilet is not accessible. He has to buy additional ‘household items’ in order to live – a guide dog, a cane, a wheelchair, a hoist.

Imagine, too, that this was a feature of a usual game – where your Sim could acquire a disability at any moment by breaking his or her neck with a fall downstairs. Off to hospital and into a massive learning experience. Imagine if he experienced a mental illness, and suddenly became schizophrenic. How would his family cope with no support? Would he still live at home? What would he do? How would he live?

Imagine that your Sim had a baby and that it was diagnosed with a disability. Or imagine that you could be tested for disability – would you be like the 90% of parents who abort babies with Down syndrome? What would you do?

We don’t exist. We’re invisible. But imagine, just imagine, if we were included, not excluded, from games in ways that offered other people insight into our ‘worlds’ – by using a virtual platform.


Monday, October 5, 2015

They Built A Wooden Coffin.

She locked him in a cage, in the corner, because he wouldn’t do what she wanted him to do.

He tied her to the bed so that she wouldn’t leave the room. Every night, for two years.

They built a wooden coffin, with a padlock, and soundproofed it with egg cartons so they wouldn’t hear them scream.

By anybody’s standards, these are acts of torture. The kinds of torture that we read about in the tabloid rags, titled with sensationalist headlines that scream, ‘He locked me in a coffin!’

But in Australia, you won’t read those headlines. Why? Because we are disabled, and torture is de rigueur. It’s par for the course. If you won’t comply, if you don’t fit in, into the box you go. And aside from a slight flurry of outrage by disability rights activists, the rest of the world will make a moue of distaste – ah, that really should not happen, should it? – and will carry on, business as usual.

The reactions are appalling. Only yesterday, the news headlines told us that a wooden box had been constructed for the sole purpose of restraining disabled clients. In a domestic relationship, the perpetrators of that act would have been hauled off to the police and interviewed. The victim or victims would be interviewed. But this is disability, where torture is an accepted practice. So what has happened? Well, practically nothing. We're talking about 'investigations' and the organisation is hiring PR firms and writing trite press releases about 'unauthorised structures' and telling us that actually, Autistic children and adults might like to be locked in wooden coffins. It's the Josef Fritzl equivalent of a press release that says that the family who plays together stays together, and that dungeon basements are quite cosy, really.

Let’s consider the facts.
The box was constructed by ASPECT staff last year and intended as a ‘calming device’, to put ‘diffficult’ clients into the box to calm them down.

The box was nailed to the windowsill, to stop it from falling over.

The box was intended to be soundproofed, with egg cartons.

The box was fitted with a metal latch, to enable it to be locked.

Within hours of the organisation being notified that a whistleblower had told authorities about the box, the whistleblower was fired.

Staff were led to be believe that it was an ‘approved practice’.

The two staff members who built the box were given the choice to resign and thanked for their service.

The clients of the service – the same people who were intended to be locked in the box – were made to paint the box with colourful designs.

It’s just the latest in a recount of thousands of cases of abuse against people with disability. Earlier this year, a government school purpose built a metal cage in a classroom for the restraint of a ten year old Autistic boy. It was painted blue.

Boxes and cages. In any other place, there would be outrage, investigations, prosecutions. Instead, there is silence and hiring of PR firms to kick off the damage control process, in the sure knowledge that in the disability sector, nobody will ever be held accountable.

In Australia, we torture people with disability every single day. In health care settings, in education settings, in disability settings. We force them into compliance based behavioural intervention, and say that it is ‘for their own good’. We tie them to hospital beds and restrain them with medication. We cut out their reproductive organs and force them, coerce them, abuse them in a hundred, thousand ways.

This cannot continue – yet it does. Australia has an abhorrent human rights record when it comes to the treatment of people with disability, and it is not getting better. We need a Royal Commission into the abuses against people with disability in Australia, and we need it now. We need strong legislation that places accountability where it belongs, and we need an independent, statutory, national body to investigate and act upon violence, neglect and abuse.

He locked him in a cage.

He tied her to a bed.

They built them a wooden coffin.

Help us stop this from happening. Urge your local member of parliament to take action and ‪#‎endtheviolence‬ by clicking this link.

Monday, September 28, 2015

A Fair Trial for the NDIS

The recent opinion pieces published in the West Australian by David Gilchrist, Gordon Trewern and other stakeholders in the disability sector are of great concern to Western Australians and their families.

The views expressed are not the views of people with disability and their families themselves, who want a fair trial for the National Disability Insurance Scheme and the State based scheme, My Way.

The West Australian Government and disability service sector have been vocal in decrying the Federal scheme, stating that 'My Way is the best way.'

But who should get to decide what the 'best way' is? Those who will be directly affected by the scheme, or those 'stakeholders' who have vested interests?

In his latest opinion piece, Gilchrist not only fails to disclose his own vested interests, but tells West Australians that the scheme is destined for failure because the 'amounts being paid for services being paid for services by the NDIA will not sustain the disability services sector'. Ultimately, he says, the risk associated with this concern will be 'borne by people in our community living with disability'.

Gilchrist has strong links to government - as a former Assistant Auditor General and employee who relies on government funding - and is currently the chairman of Nulsen, one of WA's biggest service providers. He asserts that there has been 'no real research into the NDIS' - despite hundreds of thousands of dollars having been sunk into the national scheme's design, primarily on consultancy and actuarial work in assessing the scheme's costs - and says that the scheme is now 'bound by a funding envelope that is artificial.'

Self reinforcing rhetoric is not uncommon at present when it comes to Western Australian disability services. At a public hearing in April, the Disability Services Commission's Dr Ron Chalmers was asked to explain why funding packages in the My Way trial were routinely, on average, over $10,000 cheaper than the national average. He replied that people in the lower South West were encouraged to rely on 'friendship networks' and informal supports. When questioned about lack of access to therapy services, he told the Standing Committee that although people were not being supported to access therapy, it was a 'transition issue'. According to the DG, people with disability prefer to have less money for their funded supports, and would prefer to ask their friends for assistance.

Dr Chalmers : I draw again on 20 years worth of experience to say that, firstly, there are many people who would prefer that type of arrangement to be in place than having to rely on the fellow yesterday who did not have the support worker turn up on the second day in his plan. Those informal networks are very attractive to people and they would prefer to be supported it that way, a more natural way, than just saying, 'I am totally dependent on a funded service.'

A petition signed by hundreds people with disability and their families recently asked decision makers to give Western Australians with disability a fair trial under the NDIS, but their voices and public protests at the Canning election sites went all but unnoticed by mainstream media outlets.

It is a shame that allegedly bipartisan-supported reforms like the National Disability Insurance Scheme have been tainted by divisive politics which are informed by potentially the wrong stakeholders. Disability reform requires a nuanced and complex understanding of social policy, and this can only be directly informed by people with disability themselves.

There is one thing that is certain. Unless we are in possession of all of the facts - the facts about which scheme will work best for West Australians with disability themselves - we will be doing them a disservice by cutting the trial and evaluation short.

What do we need to happen in the NDIS/My Way trial?

- People with disability, their families and consumer representative groups in Western Australia must be directly involved in decision making around the future of the State scheme for people with disability and people with psychosocial disability. It is not acceptable for politicians, service providers and government departments to be making decisions which will directly affect our lives and futures.

- The NDIS/My Way trial must be allowed to run its full course, and people with disability must be directly involved in the design and implementation of the evaluation to ensure that it is fairly and equitably conducted.

- Key issues for different population groups, including the Aboriginal population in Western Australia, the CaLD community, the LGBTIQ communities, people with psychosocial disability, people with acquired injuries (including those who are compensable), regional and remote Western Australia and people who are exceptionally disadvantaged (including people who are living in institutionalised care and people with very high support needs) must be thoroughly examined to ensure the workability and appropriateness of any implemented scheme. There will also need to be close thought and examination of workforce and sector capacity issues and an understanding of how a state based scheme may interact with a national scheme (different residency requirements, portability of funding, safeguarding) and the NDIS legislation.

- A citizen’s jury should be considered as part of any evaluation to ensure that people with disability are independently and fairly judging the merits and pitfalls of each scheme. This jury should be funded by government (either State or Federal) and conducted by disabled person’s organisations.

- People with disability and their families should be given equal voice by media outlets, in political arenas, and in governance and decision making processes around the two schemes.

- There must be specific attention given to choice and control for people with disability, which under the State based scheme is allegedly more limited than the NDIS, to transport in regional and remote areas, to portability of funding and ownership of information. There must be robust analysis about the contention that My Way is able to be delivered for $10,000 cheaper than NDIS, despite higher costs for providers and regional locations, and the assumption that people will be forced to rely on 'friendship networks'. There should also be close examination about the apparent failure to fund therapy services because of 'transitional issues'.

- The bilateral agreement should be closely examined in relation to the impact upon choice and control for people with disability, as should the My Way emphasis on service provision.

- People with disability need to have roles as critical questioners in some of the key differences between the schemes. For example, it takes much longer from time of consent to time of plan approval in the My Way scheme. In the NDIS trial, more people are found ineligible. There is a vast and unexplained discrepancy in package sizes (ten thousand dollars more in NDIS) and My Way claims to have 34% self management, with no breakdown regarding shared management costs. Alarmingly, there is no available data from the My Way trials about complaints, internal reviews, AAT applications, safeguarding or satisfaction ratings.

- Modeling should be carried out about how a person will not be worse off if they move from Geelong to Perth, or vice versa. Portability was one of the key components of a national scheme, as was certainty - will certainty of funding be guaranteed under a state based scheme that sits separately from the NDIS?

- We need to ask and address key questions about certainty and change in the future. Will improvements/legislative amends are made in national scheme - will My Way just get left behind or will it seek to provide parallel level of benefits? How will they guarantee "not worse off" into the future?

Image description 1:

Three vests sit on stands. One is an Argyle sweater, the second is a standard vest and the third is a life jacket.

The Vested Interest Exhibition
The WA Government and Public Service has a vested interest in a successful My Way trial. They care about their jobs, power and control and will do anything to make sure they retain that, at any cost.

The big service providers have a vested interest in a successful My Way trial. They are in corporate survival mode, and will do anything to survive, no matter what the cost.

But what does a vested interest look like for people with disability and their families?
You think you're stakeholders, but this is about OUR LIVES. We want a FAIR TRIAL for the NDIS.

Image description 2:

A group of protesters holding signs speak to a politician about the NDIS My Way trial. One of the signs reads, 'A Fair Trial for the NDIS'.

Transcript of the Opinion Piece in today's West Australian.

The West Australian, Monday 28 September 2016
Summit throws down gauntlet on NDIS cost
By David Gilchrist

Last month’s National Reform Summit was one of he first realistic and open policy discussions we have seen in Australia for a long time. It included participants from industry, unions and non-profit and community groups and, essentially, laid down a challenge to politicians to implement real reform in a comprehensive rather than a piecemeal and politically-averse way.

One of the key areas of focus was the National Disability Insurance Scheme, and for the first time industry and government leaders are realising the challenges of implementing this critically important policy.

The summit identified that this important initiative was likely to be more expensive and more complex than seemed to be understood in policy circles and that the rollout of the scheme was at considerable risk if there was not a more realistic policy discussion – focused on demand and true cost.

This observation has not come too soon. The NDIS was established during the death throes of the Gillard/Rudd governments and was not well researched or planned prior to the commencement of the trials around the country, primarily because the political drive to be seen to get it started overshadowed the research and planning that should accompany any massive policy implementation process.

Because there was no real research undertaken, and because we still do not know what the levels of demand or what the true cost of service delivery are likely to be, the National Disability Insurance Agency, the government agency charged with implementing the NDIS, is now bound by a funding envelope that is artificial.

This policy corner into which the NDIA has been painted may lead to a significant disruption of critical services to some of Australia’s most vulnerable people if the true cost of service delivery and likely demand are not identified and service providers are unable to operate because of lack of funding.

Combined with higher than expected likely demand – estimates of which were originally based on service user and ABS data which did not match the eligibility criteria now applied by the NDIA – the current $22 billion funding envelope is being stretched by the NDIA as they attempt to fund service providers at unrealistically low levels.

There is growing and justified concern that the amounts being paid for services by the NDIA will not sustain the disability services sector. Ultimately, the risk associated with this concern is borne by those people in our community living with disability.

To be sure, $22 billion is no small amount and we expect any government agency to be frugal with taxpayers’ money. However, the issue is not that these things cost a lot of money or that we should simply throw more money at the problem. Rather, we need to understand the problem before we can identify an effective solution. Without a government appetite for finding out what true cost of service delivery and demand is likely to be, any attempts at identifying efficiencies will be ineffectual and the sector itself cannot focus on assisting government to find solutions.

Commonwealth government funding is critical for sustainability of the disability services sector. However, local decision-making and disability service sector involvement is also critical. The WA experience is a case in point. The Disability Services Commission “My Way” model is likely to help ensure local decision-making and control build on the use of national resources for a better and more efficient outcome for service recipients. Indeed, local decision-making strengthens integration of services – both NDIS funded and others which, in turn, helps engender efficiencies.

The popularity of the NDIS is a very important political asset. Such popularity can be used to allow the Federal Government the political latitude needed to identify the real demand and true cost of service associated with this scheme and to build a plan involving sector cooperation and thoughtful funding arrangements over a longer period. Indeed, the accession of Malcolm Turnbull as prime minister may also allow this to happen. Arguably, he has the political capital needed to reset this important initiative.

The summit’s call for realistic debate may be the circuit-breaker needed to jolt policymakers and commentators into thinking more comprehensively and with a long-term view.

Professor David Gilchrist is the director of Curtin Not-for-profit initiative and a Director of a major service provider in WA.

Sunday, September 13, 2015

The Specificity of Pain

‘White people weaponize both the concepts of individuality and equality in order to deny that they constantly perpetrate patterns of abuse by denying the specificity of marginalized experiences and pain (which, in itself is a form of abuse).’ – Cassandra L.

I sat in front of the man at the conciliation conference, and he looked at the file. For a long time, fixedly. Finally he spoke.

‘You said in your message that you were ‘slightly concerned about how this is going’. That really doesn’t reflect that you felt discriminated against, or that you were hurt in any way, does it? ‘Slightly’ concerned?’

I blinked. We were there to discuss a physical barrier that his organisation had installed to prevent cars from entering a site. That had also stopped me and other wheelchair users from entering the site, something they admitted that they hadn’t thought about.

I could feel my face reddening and my throat closing up. The last time I’d been in this room, I’d been at another conciliation meeting – a hearing where we’d talked about another discrimination matter, one which had cost me two years of my life and a fairly solid dose of PTSD. Sitting here, in front of another man in a suit, was actively causing me further pain. Pain, denied, unless I caused myself further pain by expressing it.

‘I wasn’t going to bleed all over my messaging to your employer,’ I finally told him. ‘I like her, and she’s being attacked from all angles about this issue. But yes, I was hurt. Yes, I was and am upset by the fact that I was physically prevented from going to work on this day. I don’t imagine you know what it’s like to be stopped from going to work in the morning…’

‘You don’t know anything about me!’ His face was red and his voice was a near shout. I didn’t know what trigger I’d hit – nor did I care. I collected every piece of my composure and injected it into my mother’s voice, channelled from the grave. Calm, British, reasonable.

‘I don’t know anything about you,’ I told him. ‘Nor do I want to. But I can look at you and see an able bodied man in a suit, who walked into this office. I am using that observation to make the assumption that you are not a wheelchair user, nor have you ever been prevented because of your physical disability from attending a place where you needed to go for work. Unless your colleagues bricked up your door in the office one day as a practical joke.’

To my alarm, I felt tears welling in my eyes – not only because I was wounded, but because this man was doing exactly what Cassandra L describes, denying the specificity of marginalised experiences and pain.

This was the same man who had told me, in a phone call, that ‘the collective good must outweigh the entitlement of the individual’.

It’s always hard to articulate the experience of discrimination and the impact that it has upon you. Nor do we always want to. There’s something peculiarly humiliating about admitting that you’re being marginalised, that you’re being abused, that you’re being discriminated against, that you’re being treated as a second or third class citizen. Our default response is to muster any semblance of dignity left to us and shield ourselves against the inevitable experience of 'pain denied' or an accusation of being angry, or bitter.

It’s the disability equivalent of wearing makeup to conceal the black eye he gave you in the kitchen for the third time this year – the grasping of any scrap of self esteem that might remain to you after all else has been torn away. Don the dark sunglasses, girls, because nobody needs to know that snot dripped from your nose as you sobbed, bleeding, in a corner. Nobody needs to know that in that one moment of furious injustice, your heart quickened and your mood grew bleak. Nobody needs to know that the thing that seemed reasonable to them at the time – because there’s always a reason, isn’t there? – has the cumulative impact of a thousand slaps, lightly delivered, more powerful for their subtlety. If you kick a dog every day, it will not take long before that dog flinches, expecting the inevitable.

Slightly concerned about how this is going. I wrote that, my dark glasses covering my eyes, my dignity wrapped around me like a bulwark against pity. Those thousand slaps, delivered daily. The psychologist who told me that that I was very lucky that the downstairs business had agreed to let them use their rooms, once a week, on a particular day. The businesses that I could not access, the workplace who refused to install an accessible toilet. The doctor who told me that in the absence of having an accessible toilet to address my menstrual needs, I could perhaps consider a hysterectomy. The man who described my human right to equitable access as ‘the entitlement of the individual’.

We fight this, daily – not just we people with disability, but every other marginalised group. Some barriers might be physical, but they are installed not just by workmen but by discriminatory attitudes. It’s all about power and control and the imbalance of power between those who are marginalised and those who hold the reins of power.

What choice do we have but to fight back? Like that dog, I do not want to be hurt again. But we only have two choices, to slink away as far as we are able, knowing that we will be kicked again tomorrow, or to bite. To fight back. And we are not dogs – there are others experiencing marginalisation and pain beside us. No choice, then, but to fight. Even when we understand that the fight is uneven.

We fight to live. And we fight together.

Wednesday, August 12, 2015

'Oh, what a feeling...exploitation.'

"Every year, small children die in their driveways when their parents accidentally reverse over them in their SUVs. Take a photograph of yourself doing a Toyota jump in your driveway to raise awareness about the perils of childhood!"

"Too many toddlers and children drown every year. Last year, 30 children under fourteen drowned in pools, at beaches and at inland waterway locations. You can help raise awareness about the possibility of drowning by taking a photograph of yourself in your pool and posting it to Facebook!

Don’t you think they’re good campaign strategies? Why not?"

That’s right. They’re offensive. The idea of your healthy, live child posing in the same place that someone else’s dead child has been to ‘raise awareness’ is a horrible idea. Yet Epilepsy Australia has chosen to do just that, with their ‘epilepsy australia bubble bath challenge’ campaign. They’re saying that you can ‘raise awareness’ – and, of course, funds – by posting an image of yourself in a bathtub.

In 1998, 34 year old Alice McTye drowned in the bathtub after a mix-up with her medication and after being left unsupervised in care in an Adelaide facility. By 2000, another three young men in the A.C.T. had died, including Brett Ponting, a man who had experienced seizures in the past. In 2008, 18 year old Jack Sullivan drowned in a bathtub in respite care – not because he had epilepsy, but because he was not supervised in the bathtub by his support worker. The government-funded respite facility where he died had a string of complaints lodged against them and many agencies had shunned the facility because of its record.

People with disability need care and support, not offensive and demeaning campaigns that exploit us and seek to profit from our circumstance. It might make you feel good, posting an image of yourself surrounded by bubbles – you’ll be part of a trend, it won’t cost a cent, others will think you’re a good person. You’ll feel good about yourself. But think, just for a moment, about how Jack and Brett and Alice’s families will feel when seeing your ‘bathtub selfie’. And think, for a moment longer, how the charity you donate to chooses to portray the people they say they support.

Image description: A toddler is retrieving a ball from behind a reversing SUV. Superimposed on the image is a picture of a women doing the 'Toyota jump', her legs bent as she leaps into the air.

Saturday, July 11, 2015

'Learn, Respect, Celebrate' - and other trite, white, phrases.

Image description: Children play in raw sewerage around a toilet block.

There’s a running joke in the disability sector that goes something like this.

Q: If the 3rd of December is International Day of People with a Disability, what happens on the other 364 days?
A: Discrimination.

I’m reminded each year on that day by the hypocrisy of the sector, who hold breakfast events to celebrate IDPwD despite most disabled people being unable to attend, who speak in glum terms about two percent employment rates and then do nothing to remedy it, who do things for us and to us but never with us, and consequently seldom get it right.

But sometimes I see this happening in other sectors. That happened this week, and it hurt my heart.

Down the centre streets of Perth, flags are proudly flying for NAIDOC week. There are celebrations in parks, in schools – even a ‘Miss NAIDOC Perth’ event for young Aboriginal women to be ‘trained’ in grooming and deportment and leadership skills. The theme for this year’s NAIDOC day is – ‘We all stand on Sacred Ground: Learn, Respect, Celebrate’.

Then why, during a week that purports to celebrate ‘Aboriginal and Torres Strait Islander peoples’ strong spiritual and cultural connection to land and sea’, are there increasing numbers of homeless people living in tents in the middle of the city, in bitterly cold weather? Why are our government departments installing sprinklers to douse our homeless like fighting dogs? Why is it that raid after raid has been carried out on a population of people who already have nothing, and why is our City imposing further disadvantage on a population who have had almost everything torn away already?

The pictures are telling. Children play in effluent, raw sewage that has leaked from the overflowing toilets. The City of Perth has refused to carry out maintenance works on Heirisson Island, and the toilets have backed up, spilling sewage into the river. Pictures appear on Facebook – there is an outcry from the public, who recognise the risk to children’s health. The City acts swiftly – they install an orange, plastic barricade and a laminated sign that warns of contamination, telling people to stay out.

A woman tells me that a wheelchair has been taken in a raid. It turns out that it is not a wheelchair but a Zimmer frame, but the elderly woman to which it belongs can hardly walk without it. She is told to walk off the Island and leave, but cannot walk. Another woman with a chronic health condition is herded into the back of a paddy wagon. The raids come often, without warning – and every time the site is raided, the people are left with less. The tents, donated by Maori communities, emblazoned with messages of support, are removed on the back of a truck by silent City of Perth workers, with police standing by. The campers watch whilst their possessions are removed, leaving them with less than when they started. Weeks later, the concrete barricades are erected, preventing cars from entering the car park. I watch a car load of people handing out scraps of wood from a building site over the barricade to a waiting lad with a wheelbarrow, one by one, their warmth for the night. There were too many people there, says the CEO. We had to limit the numbers. I’d complained because they’d also prevented people with disability from entering the site – when I tried to get to the campsite to meet with a disabled woman and hook her up with advocacy services, I could not. The CEO tries to allay my fears – what happens if someone cuts off their foot with an axe? I ask. Emergency services can’t get in there. They can, he reassures me. Later, I learn that two young white women had set a fire at the rear of the Island and fire control vehicles could not access the site. The campsite is an accident waiting to happen. And when people are forced out, where will they go?

Learn, respect, celebrate. Those words haunt me today, on the last day of the NAIDOC ‘celebrations’. Little to celebrate for those who are out in the cold, and certainly little respect. Communications have been cut off between the two warring parties, the Aboriginal community who remains at the site and the City of Perth. Stalemated, they keep doing what they are doing – one side trying desperately to survive at any cost with their pride and dignity intact, the other imposing increasingly punitive measures to force action, whatever that may be. The legal issues drag on and on, but the reality exists that old women and small children are living in third world conditions, that people have been thrown off their lands and communities, that children are playing in effluent. Learn, respect, celebrate.

I wake at five am, the time when we Scout leaders recognise that the winter temperature always drops sharply, when no matter how warm your sleeping bag is or how many clothes you have on, you are always, suddenly cold. I think of the homeless man who is dying of cancer and living at Matagarup and I think of the elders, huddled in their tents. I wonder if they are cold – I wonder if they had firewood last night, or if they had a meal. Like the employees of the City of Perth, I am sleeping in a bed, with my belly full. Nobody would dare to take my possessions, nor turn a hose on me whilst I sleep.

I do not know what the solutions are – all I know is that what is currently happening is not working. I have called on the CEO of Perth for a ‘winter amnesty’, where both parties can work together to make sure that people are safe, as an interim solution. Others have called for a Homelessness Summit, or a discussion about how we can ensure that we have homelessness precincts. The bigger issues will play out in their own time – they always do.

But for now, on the last day of NAIDOC Day, 2015, there are 10,000 homeless in Perth. And old women and children who are cold, in a tent.

Learn, respect, celebrate. The theme is an opportunity to pay respects to country; honour those who work tirelessly on preserving land, sea and culture and to share the stories of many sites of significance or sacred places with the nation. – NAIDOC website

Sunday, March 1, 2015

I'm Not Here For Your Entertainment

‘How would you do that?’ I asked the job candidate. She’d applied for a job in the disability sector, and I was interviewing – one of the questions related to the ‘how’ of making systemic change in the sector.

‘I would find people and get them to tell their stories,’ she said earnestly, and I made a mental note – she was the third in as many interviews who had spoken about the importance of using people’s stories to create systemic change.

She’s not the only one. Bolstered by the success of Twenty Years: Twenty Stories, former Disability Discrimination Commissioner Graeme Innes has long been a proponent of the use of the stories of people with disability to transform the system. We all know it works – telling a personal story adds that extra, authentic, undeniably effective element. The BSWAT decision, the result of a concerted wage justice campaign, would not have been made if Messrs Nojin and Prior had not been prepared to tell their stories about being paid $1.85 an hour. Disability Justice Centres in WA would not have been built if men and women like Marlon Noble, imprisoned unfairly and without charge under the Mentally Impaired Accused Act, had not been profiled in the newspapers. People react to tragedy and unfairness, and it is often the only ammunition left in our arsenal – the NDIS was launched after a massive campaign by people with disability and their families, shouting about only being able to afford two showers a week or not being able to afford a wheelchair.

But is anyone asking the question; ‘is this just another form of inspiration porn?’

In feminist culture, there’s a current discussion going on about tokenising rape survivors. It argues that we live in a rape culture, which makes survivors feel ashamed about their trauma. For this reason, many anti rape campaigns encourage survivors not only to say that they were sexually violated, but also to give accounts of their experience of sexual violence.

But, they argue, the strong focus on story-telling has an unfortunate side-effect. Often, survivors are reduced to their stories. In other words, survivors’ stories are treated as ‘inspiration porn’. And that is an argument that is transplanted across sectors – is it possible to keep re-telling our stories of discrimination and abuse and violence without being reduced to eternal victimhood?

I see many parallels. Rape is a denial of someone’s personhood – a victim’s body is used for the gain of another. Discrimination and other abuses, including ableism, deny the rights of a person with a disability to be a person with the same rights as any other citizen. We’re constantly perpetuating the ‘perfect victim’ narrative – it is a simple thing to tell a story about someone who is unable to be ‘victim-blamed’, because it conforms to the perfect victim scenario. If you’re raped whilst drunk, the public sympathy is lesser – if you blew your compensation payout after breaking your neck, your stories about only being able to afford two showers a week are unheard. If you glanced through the submissions to the WA no fault insurance scheme, you’d probably be astonished at the vitriol hurled against cyclists – unlike motorists, they are somehow at fault for acquiring catastrophic injuries simply because they had the unmitigated gall to be on a road in the first place. Can anyone say Jill Meagher in a dark alley, hallelujah?

The feminists argue that we look for a certain thing in rape narratives – we want to be inspired. We want to hear how the individual overcame their circumstances, not how society needs to change in order to eradicate those circumstances.

We want to hear that everyone can overcome suffering. We don’t want to take responsibility for a creating a culture that perpetuates that suffering.

Last year, I told a group of startled bureaucrats that I had to leave my job because they refused to put in an accessible toilet. I had become accustomed to telling that story – not just to my employer, but to my lawyer, to a whole cast of men and women in suits and people on the ends of telephones and email addresses. I think of the men and women I know who constantly tell their stories to create systemic change – stories about toilets, yes, but also other forms of unfairness and discrimination and abuse and brutality. It takes an enormous amount of courage to disclose those personal details and your private hell to a group of strangers, who will invariably tut tut and tell you that it is dreadful, that terrible thing that happened.

There’s evidence that we’re reduced to our stories, we people with disability. Last year, a man at a workshop asked a colleague ‘if I could do a standing transfer’. I was horrified – but is this not an unintended consequence of being reduced to a story, or a cohort? Is the perception that our individual personhood is 'less' now the collateral damage of a mechanism calculated to create change?

I’m not here to inspire you, said disability advocate and journalist Stella Young. Neither are the rest of us. And there’s a difference between choosing to tell your story in order to heal - making damned sure your experience will never happen to anyone else – and doing it for someone else’s gain, sacrificing your dignity and privacy and personhood in the process.

Food for thought.

Tuesday, February 10, 2015

An Open Letter to Jules Anderson

Dear Jules

At three thirty today, Parliament are being asked to say yes to a national inquiry into disability violence, abuse and neglect.

I heard today that you are standing shoulder to shoulder at Parliament with other disability advocates, making your voice heard.

When I watched the Four Corners episode, where you talked about being raped by a disability support worker, I cried.

You spoke out with such ferocity. You understood that this man was wrong to do what he did. You spoke up, and he went to jail, and now the nation waits to hear what our Government will do.

I don’t know if you know how important your voice is. That you have made change for hundreds and thousands of Australians with disability – no matter what they say today.

You were not just speaking up for yourself.

You were speaking up for every single woman with disability who has been raped or who has suffered some other form of violence – that’s 90% of Australian women with an intellectual disability.

You were speaking up for every single Australian man, woman and child living in residential care or an institutionalised setting today.

You were speaking up for every woman who was not believed when they told others, every man and child whose voice was not heard.

You spoke up with dignity, clarity and determination that this would never ever again happen to any other person with a disability.

I want you to know that the rest of us owe you the biggest debt of gratitude you can imagine. Your courage means that today the whole of Australia will be thinking about making change for people with disability – to keep all of us safe.

By telling your story, you have made more of a difference than dozens of advocates who have worked for decades to make change.

Today, you are the one in the position of power.

As a woman with a disability and someone who cares about the safety and rights of others with disability – thank you, Jules. Thank you from all of us.

- Samantha

Jules Anderson told the story of her rape and abuse to Australia on the Four Corners program in November, 2014. You can watch it or read the transcript here.

Sunday, February 8, 2015

Her Absence Filled The World

Her absence filled the world.

It's an image by Kentridge, a simple sketch of a figure standing on an empty hill with the words 'her absence filled the world' sprawled across it. An desolate image that makes you think about loneliness and loss, and grief. For me, it makes me think of something other.

I read a story a few years ago, and it haunts me still. It is about a girl, a young girl who moved out of her home in Pyramid Hill when she was nineteen. Her learning disability was mild enough to present few barriers, and she could read and write and work.

Her name was Krystal Fraser.

You've probably never heard of Krystal, right? If you lived in Pyramid Hill prior to 2009, you might remember a bright, sociable girl who was described by a community member as a 'serial pest'. She talked to everyone, indiscriminately - as a person with a mild intellectual disability, she wasn't supported by staff. And eventually Krystal fell pregnant, although nobody ever knew who the father was.

The reason you've never heard of Krystal Fraser is that she is almost certainly dead.

The real reason you've never heard of Krystal Fraser is that her absence never for a minute filled our world.

Why, in a country where the killing of 29 year old Jill Meagher invoked widespread outrage, public displays and a thirty thousand strong march, did the murder of pregnant Krystal Fraser cause barely a ripple?

The easy answer is this - Krystal had a disability. And despite being loved by family and included at the fringes of her community, she has now almost been forgotten.

Chris Johnson and Nino Bucci wrote a very good investigative piece three years later about Krystal - you can read it here.

There are a few other online references in the Herald Sun, and a call for information and an offer of a reward from the Victorian Police. But Krystal's disappearance has largely gone unremarked by our community - it is like she was never here.

Krystal was twenty three years old.

I read the tributes for Jill Meagher - bright, popular, an ABC employee.

But there are no tributes for Krystal, who walked out of a hospital to meet her unknown killer. No yellow ribbons tied around trees for a girl who had 'too many friends'. The family stands alone on the hill, waiting for a phone call that may never come.

The last time Krystal was seen alive was at a house in Pyramid Hill, where she made a call from her mobile. It was Friday night, and she had checked out of the hospital where she was due to give birth on Sunday. Just before midnight, someone else called from a public telephone box some fifteen minutes away. And that was it - her phone was tracked travelling down a bush road nearby, and Krystal was never seen again. Her baby, a boy who she planned to call Ryan, was due two days later.

Krystal's brother, sister and parents are convinced that she was murdered.

"She was always on her phone. I heard from my daughter 20 times a day, every day," her mother, Karen, says.

"If she was out there, she would have found a way to contact me....I believe she was murdered."

The hardest part for her family is not knowing where Krystal is.

"If it’s raining, I wonder if she’s warm and dry," her mother says. "If it’s hot, I wonder if she’s staying out of the sun."

"I just take one day at a time. She’s gone. I have no answers."

I cannot imagine not knowing where my daughter is, or contemplating the thought that I will never know.

Her absence would fill my world, and I would expect it to fill yours.

There is a 100,000 reward for information leading to the apprehension or conviction of whoever killed Krystal and her unborn child.

Anyone with information should call Crime Stoppers on 1800 333 000.

Tuesday, January 27, 2015

Public Stripping

I stood there, in my underwear.

They were pale blue, with small flowers on them. I remember it very clearly – mostly because there were four men in the room who I had never met before. They were looking at my body, and my mother wore a worried expression.

The tallest man touched me.

“You see, here and here,” he said.

His hands were warm. The other men were looking at my body, and none of them looked at my eyes.

“You can get dressed now, dear,” he finally said, and I scrambled to put on my clothes.

I was four.

I was not sure why that memory has always stayed with me, nor why it was a traumatic one. There was no suggestion of sexual impropriety – these men were doctors. Nobody ever acted inappropriately. It was not until the first time I looked at a medical image of a young girl with a disability that I blenched. A young girl in her underpants, facing the camera without a smile on her face. The image was posted online and I immediately recoiled. So did other women with a disability.

My disability is degenerative – I had limited intervention until later in life. But can you imagine the psychological trauma experienced by those now-adults who were routinely measured, prodded, photographed and inspected every month of their childhood?

In her scathing account about ‘public stripping’, Lisa Blumberg talks about this crude practice. Privacy in medical examinations may be the norm for ordinary persons, she says, but they’re not the norm for disabled people – and particularly not for disabled children. Doctors at hospital and clinics which specialise in paediatric conditions such as spina bifida, cerebral palsy, muscular dystrophy and brittle bone disease have traditionally displayed their patients in front of colleagues, residents, therapists and students. Public stripping is a degrading practice that has a lasting psychological impact on adults today.

Strap these to your feet, he said. They were sandbags, fashioned into clumsy calico bags that my mother could strap to my ballet shoes.

“They’ll strengthen your legs,” he said, and dutifully I went to my ballet classes – plie, plie, demi plie. Amongst all the other little girls in pink tulle, my feet weighed me down and I shuffled around the room. At the doctor’s, more public stripping, and a delighted inspection of my legs, hips and feet.

“I think she’s getting stronger,” he said at last, and my mother sent me back to ballet classes. Eventually, I refused to go.

“But you love ballet!” she exclaimed, and I did not have the words to tell her that ballet was now indelibly intertwined with doctors, pain and public stripping – with shame, embarrassment and a sure knowledge, instilled with a deft hand, that I was broken forever.

At a recent disability rights conference, Blumberg says, a 30 year old woman with spina bifida described her medical experiences in a voice shaking with pain and anger. All through childhood and adolescence, Anne told the group, the semi-annual orthopaedic examinations her doctors required her to have took place in a large hospital room, with 20 or more doctors, residents and physical therapists looking on. During the sessions, Anne was permitted only to wear underpants.

No one ever explained to Anne why she had to be examined in front of a group. No one ever considered whether she found it embarrassing or upsetting to be viewed nearly naked by so many people. No one ever acknowledged to her that she was being used as a teaching tool. No one ever told her or her parents that she had any choice in the matter.

What the medical profession does not understand, argues Blumberg, is that disabled people who seek medical advice are like anyone else seeking such advice. By and large, we want to be provided WITH a medical service, not to render one.

As an adult, I have an aversion to physicians. I can barely scrape up enough courage to attend for an annual medical examination – after a childhood filled with adult stripping and teenaged years filled with muscle biopsies and needle electromyograms, I am sufficiently traumatised to avoid any doctor, often to the exclusion of good general health. It is difficult for me to go into a doctor’s surgery without reimagining the worried look in my mother’s eyes or the doctor’s dispassionate tone. The smell of antiseptic or bleach makes my heart race still.

As disabled people, we are routinely discriminated against by the medical profession. We do not have access to regular medical facilities because of lack of accessible facilities or equipment – we are routinely denied basic treatment because we are ‘difficult’, not shaped or created in the same way that others are. We are killed at an alarming rate – we are ‘let go’ rather than resuscitated because of the opinion of the medical profession about our quality of life, in the name of mercy killing. The phrases ‘she’s not suffering any more’ or ‘he’s free now’, are sentiments regularly stated at the funerals of disabled people. We’re killed even before we’re born, in the womb, a staggering 90% of foetuses diagnosed with Down syndrome terminated on the basis of their difference. We are sterilised without our consent and have routine medical procedures carried out without our informed consent.

‘All the ladies in the group home go and get the shot every month,’ a woman living in a group home told my friend. Depo-Provera suppresses menstruation in many women, despite carrying side effects. Few of the women in the group home are sexually active, but menstruation is a messy business. None of the women were given any information about the side effects or about using other forms of contraception. It goes on every day, this casual breach of our rights in medical settings.

There’s a prevailing myth that people with disability should be ‘dealt with’ by the medical profession, and that leads to the belief that ‘doctor knows best’. People with disability certainly need access to good medical care. But why should that be at the expense of our dignity, our privacy and most of all, our basic human rights?

The next time I take my clothes off in front of a group of men, I expect them to throw money at me. As a middle aged disabled woman who isn’t prone to frequenting strip clubs, I don’t expect that to happen often.
You can read Lisa Blumberg’s account about ‘Public Stripping’ here.