Thursday, August 21, 2014

The Spaces In Between

Draw a circle, I said. It was in one of those classrooms where many people drew circles and talked about things like personal space and public and private behaviours and how to make a cup of tea.

He dutifully drew a circle.

Now draw another circle around it, I told him. He did, and I filled in the gaps, drawing more circles – family, friends, paid support, others. That’s what we were taught to do, to help people understand their boundaries. Paid support workers won’t hug you, but they will take you to your day programme. Friends and family live in the same circle, and they will hug you as much as you want.

He looked at me. ‘Why are they in circles?’

That’s the question that keeps coming up. Who else in the world has areas firmly delineated by ‘professional boundaries’ when it comes to your day to day life? How can you compartmentalise your whole life into little circles?

There’s a show on television at the moment called ‘Dream House’. It’s a reality television series about three young people who are living in a group home – it’s been roundly criticised by the disability sector and has divided much of the disability community.

The housemates are young and presentable and capable people with an intellectual disability or autism. They are being supported by ‘buddies’, mostly TAFE students who are volunteering their support to the project. And there, again, the issue of ‘boundaries’ raised its ugly head – a young man with autism flirts with one of the ‘buddies’, another housemate goes to hug her. She flinches away as if a cockroach has crawled on her, unsure what to do. Laughs off the flirting, but raises it as a ‘behaviour’. A ‘behaviour’, and who can blame the young man? She is busty and pretty and has a lot of mascara on her long eyelashes and a flower in her hair. She is laughing and joking and smiling winningly into his eyes. He is a good looking lad but his affection is articulated in the way that is usual for him, a young man with a disability. Something different, something that she and others aren’t used to, something outside professional boundaries.

Outside the circle.

Those ‘circles of support’ that we keep drawing, over and over again. Drawing as though we’re reinforcing the lines and boundaries, for all of us. You must stay there, as client. She must stay there, as support worker. Here is the disability sector, and this is your world. And out there in that tiny circle to the left is ‘mainstream’ or ‘community’…you can travel there, but you must travel within your clearly delineated boundary, not quite belonging.

Two of the housemates were teasing the third, an attractive young woman who has a disability. They call her ‘darling’ and ‘sweetheart’ and she laughs and calls them ‘ratbags’. And later, a serious-faced staff member sits the men down for a ‘chat’ – you can’t call people darling or sweetheart, that’s what you call your girlfriend, not your housemate. You cannot hug, it is not allowed. And the man who has ‘inappropriately’ hugged another looks wearily at the camera – he has just knocked off work – and says, ‘I can’t help it. It is how I FEEL.’

I stop watching the show as it cuts to the ‘disability specialist’, who solemnly tells the world that people with Down Syndrome are ‘very friendly’. And I wonder how that stereotyping would work for a number of people with disability I know, including myself.

If you have Down Syndrome you are friendly, and ‘always happy’. If you have a disability that is physical or sensory, you are inspirational or a victim – vulnerable, weak and a tragic object of pity. If you speak up, you have a chip on your shoulder – you’re twisted and bitter. You can’t be a sexual being – unless your partner is a pervert or a martyr – and you certainly can’t participate in everyday life like the rest of ‘us’. Clown, victim, inspiration, burden and outcast.

I’m beginning to think that the way that we write and define those same ‘circles of support’ are sometimes the same way we write those stereotypes – with indelible ink, in negative attitudes and long held and preconceived misconceptions. With the same pen that we write policies and procedures designed to fit the best interests of the workers or the agency, the same pen we write both person centred plans and risk management with. You can’t define relationships, no matter how much you want to clarify boundaries. You can’t compartmentalise lives, because we are complex and intricate, all of us.

Six weeks before my mother died, her support worker came to me.

Here’s my phone number, she said. I’m worried about her. I know you’re worried about her, too. It’s against the rules, but here is my phone number. Ring if you need me, and I will pop around. I know you’re two hours away, but I am just around the corner.

I’m in a little trouble at work, she told me. They only let us drive clients nine kilometres away from their homes, but there’s just not a lot around here, so I drive her to Fremantle, and they found out. Sometimes, she confessed, I take her to my house for a coffee. And the gratitude must have been shining in my eyes for my mother, who had spent two years being pushed around shopping centres by disinterested staff.

It was that support worker who told me that she’d fallen – Mum wouldn’t tell anyone else. I’m worried, she said. Nothing I can put my finger on, but she’s just not herself. Hard to wake up, and I went around to check on her after work. I’ll phone later. And it was that call at eight o’clock at night that led me to take my mother to the doctor, then hospital, then a palliative care facility, where she died.

She broke the rules, that support worker. She stepped outside the circle. And for that, I will always be grateful.

I’m no longer interested in those circles, truth be told. I’m interested in the spaces between - in investigating the concept of community and how communities are formed, and how and more importantly why they support people well. Looking at where people have stepped outside the circles to the spaces in between, rupturing the old lines that have been drawn forever, pushing fresh ideas and new ways to include people. Occupying that same mysterious space that is called ‘community’ or ‘mainstream’, resisting the spaces that have been appropriated by ‘services’, investigating the spaces in between.

We need to think outside the circle.

Saturday, August 16, 2014

Shut in, Shut up and Shut Out

NEWS that the UK government is risking ‘systemic violation’ of international human rights law in its treatment of disabled people raises the question – what about us?

Australia is also a signatory to a binding UN convention on the rights of people with disabilities, but our scorecard, whilst not being publicly damned, doesn’t cover us with glory.

We are letting people with disability down. We routinely discriminate against people with disability in the justice system, although we promised to ‘ensure effective justice for persons with disabilities on an equal basis than others’. Ask Marlon Noble how he feels about our compliance with Article 13 – he was locked away for ten years under laws relating to the Mentally Impaired Accused Act, despite never being convicted of a crime. Marlon was ‘freed’ after a campaign for his release, but must now be in a support worker’s ‘line of sight’ for the rest of his life, and must ask permission to leave his home town, Geraldton – something we haven’t imposed on indigenous or other peoples since they were governed and managed under the Flora and Fauna Act in 1967. Ask Marlon how he feels about access to justice.

We promised to make sure that people were free from torture or cruel, inhuman or degrading treatment or punishment, but we still routinely employ forced sterilisations upon people who have the capacity to consent when provided with appropriate decision making support. It’s a clear breach of Article 15 and our international obligations to prevent torture at all costs – forced sterilisation constitutes torture. Is that a matter of conjecture or opinion? No. The UN Special Rapporteur on Torture explicitly prohibits it.

Forced interventions [including involuntary sterilization], often wrongfully justified by theories of incapacity and therapeutic necessity inconsistent with the Convention on the Rights of Persons with Disabilities, are legitimized under national laws, and may enjoy wide public support as being in the alleged “best interest” of the person concerned. Nevertheless, to the extent that they inflict severe pain and suffering, they violate the absolute prohibition of torture and cruel, inhuman and degrading treatment. (Méndez, Juan (UN.Doc A/HRC/22/53)
We told the UN that we’d make sure that people were protected from exploitation, violence and abuse, but there is a clear and acknowledged epidemic of abuse of people with disability in institutional settings. Our response? We’re solving the problems, we say, though National Disability Services, via a program called ‘Zero Tolerance’ - where people with disability are excluded from the process of developing strategies around prevention of neglect and abuse in institutional settings. There is limited national data available, and the national reporting line for abuse and neglect does ‘not cover institutional abuse’ – ring it, and they’ll tell you to complain to the provider. Disability care and support is often tied to housing, so if your complaint is not upheld by your abusers, you’re likely to be out in the street. And they’re the people who are developing the ‘strategies’ to stop it happening – as effective, perhaps, as asking incarcerated paedophiles to develop strategies for child protection. The Government’s response to the issues? The National Disability Strategy doesn’t give us any specific actions around preventing and reducing violence, the National Human Rights Action Plan doesn’t address issues like sterilisation, exploitation, neglect or violence in institutional settings and the National Plan to Reduce Violence against Women and their Children excludes violence against the disabled if they’re in care or service settings.

We’re living in poverty, over a quarter of us. We rate lower than Mexico and the lowest of all OECD nations when it comes to poverty risk – 29 out of 29 countries. Our work and employment rates are shameful, with labour participation at record lows and the Australian Public Service leading the way in low participation rates. We’re breaching Article 19, where we promised to let people live independently and be included in the community – we lock people up in a range of institutional settings and don’t give them options about where or how to live. We still use a discriminatory wage assessment tool, the BSWAT, to justify paying people less than a few dollars an hour in sheltered workshop arrangements. As you go through the list, it becomes evident that Australia is doing more than ‘sleepwalking towards the status of a systemic violator’ of human rights – we are galloping towards it. Faster and faster. Despite the National Disability Insurance Scheme and decades of work by disability advocates.

The United Nations has the power to launch an inquiry if it receives ‘reliable information’ that violations have been committed by a country signed up to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and its optional protocol.

We don’t want to be locked up any more. Shut in, shut up, shut out. Perhaps it IS time to do what the UK disability movement is doing - stopping the navel gazing and asking the international community to step in.

Wednesday, August 13, 2014

If Only Everyone Was George Takei

George Takei. If you’re not on his Facebook page, you need to be. George is witty, thoughtful and passionate – especially about human rights issues. George didn’t come out til he was an older guy, but his work in the gay rights movement has been outstanding.

As of today, George Takei’s Facebook page has 7,425,539 likes.

And today I liked him even more.

A week ago, Takei shared this meme. Unfortunately, I missed it.

Today he posted this incredibly thoughtful apology.

‘I’ve just come back from an extended trip to England, and I came home to a large number of fan emails concerning a meme I shared more than a week ago. In that meme, a woman in a wheelchair was standing up to reach for a bottle of liquor in the store, and the caption said something about a miracle in the alcohol aisle. To this I added a quip about her being touched by the holy spirits.

I did not expect the level of offense this meme caused. I had naturally just thought of those movies where the evangelical preacher miraculously cures someone who was disabled. What I’d never really considered before so many fans wrote in is how that portrayal of disabled persons is filled with ignorance and prejudice—two things I never want to promote, even inadvertently.

Now, before all of you go and start defending my right to post what I want, I want first to thank the many fans who wrote in with the hopes of educating me on the question of “ableist” bias. While I did not ever mean to suggest by sharing the meme that all people in wheelchairs cannot walk, or that they don’t need them despite the fact that they can stand on their own from time to time, I have taken the fan mail and criticism to heart.

After I’d posted the meme, I noted in the comments an inordinate amount of very uncivil behavior on the part of many fans, including both those who demanded I take it down and those who said I should leave it up. I also received a good deal of email IN CAPITAL LETTERS asking me if I would feel the same way if someone called me FAG or a JAP. Now, I took down the meme from my timeline shortly after it went up, but I admit I was decidedly irked by the tenor of some of those criticizing me. In that moment, I posted a follow up telling fans that perhaps they should “take it down—a notch” which, in retrospect, was not the most sensitive response.

The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community. I appreciate those who took the time to write in. I wish I’d had the chance to respond sooner, but until today I was not able to go through all the mail I’d received.

So to those who were hurt by my posts on this issue, I ask you please to accept this apology. To those who think I shouldn’t have to apologize, I want to remind you that I get to decide what I apologize for, so there’s no need to come to my defense.

Very well then, carry on, friends. Carry on.’

And as of this minute, 45,487 have liked the post, and 1,235 people have shared it. But…then there are the comments.

Let me clarify something. This woman in the picture could well have been me. I mean, it would be me with a far trimmer rear end, a new hairstyle and a decidedly hospital grade wheelchair. But I can stand. I can walk. I didn’t break my neck. Nothing is paralysed.

I have a condition called limb girdle muscular dystrophy, and it could well have been me in the bottle shop. For a start, the woman is reaching for the stuff on the top shelf. Yeah, baby.

But the comments – there are comments beneath Takei’s post, despite his considered response, that make me understand WHY I drink. Comments like this.

Wow!!!! Get a life folks!!! I thought it was pretty goddamn funny George!!

Butthurt (repeat this witty comment x 1000 times)

Seriously ! it seems no matter what you do someone somewhere will take offence, and to them I say GET OVER IT! for god sake realize humor is not always kind, yet you laugh and i don't think it was in very bad taste, there are many frauds out there sitting in wheel chairs, I have a great , but sad story that emphasizes that very thing, George Takei you don't need to apologize to anyone ! And I don't have the time to retell that story... About a one legged black woman and her wheel chair in Vegas.

It must get tiring having to live politically correct. To the people "educating" George, kiss off and get a life. Half the disabled people I know are full if shit, just lazy and want pills. There, now give me crap cause I dont care.

And then there was this.

(Picture of a hamster, with the words ‘Ableism? Cic? I laugh at your made up words. You betas, manginas, thuglovers and alphacock carousel riding feminazis are hilarious’

About five percent of the comments were from people who thought that Takei was right to apologise, and thanked him for doing so. A percentage of others just loved Takei, but well over sixty percent of people thought those disabled people just needed to lighten up. They didn’t find it offensive at all, and didn’t think anyone else had the right to be offended.

Takei, as a gay man (and a man who had Japanese parents) understands microaggressions, the type I wrote about a few months ago here. But he's not disabled. Takei looked at this meme, like the rest of the world did, and he laughed. If I looked at it, I would have seen it differently.

This is what I would have seen. This is what I would have remembered.

I would have remembered every time that someone jumped when I moved my foot or stood or leaned far over and looked at me, wondering, speculating. Because all people in wheelchairs have a spinal cord injury…if you can walk, why do you use a wheelchair? Are you a fraud?

I would have thought about the conference I co presented at last month, and the incredible upset and hurt that I felt when a colleague told me that his co-worker had asked ‘Can she do a standing transfer?’ The equivalent of me asking of an able bodied male presenter – ‘Is he circumcised?’ All of a sudden, you are reduced to being not regarded as a professional, nor an advocate, nor a speaker – you are reduced to a disability, a body in a chair.

I would have remembered that it is getting harder for me to stand, and that when I get up from the ground, I need to straighten my legs and ‘ladder’ my hands up my thighs to get up. And that sometime in the future, I will not be able to stand up at all.

I would have thought about the lack of understanding and lack of caring that led to me losing my job, because there was not a place for me to piss at my workplace that was close to my office.

I would have remembered the daily speculation, the lack of understanding, the perception that people with disability are ‘slackers and slouchers’ who do not work and who bludge off the government. That’s the message sent by the meme. It’s an insidious one, one that is creeping into our media every day and into the minds and hearts of the masses. In May of this year, this headline hit the Daily Telegraph –

(A newspaper headline ‘NSW DSP Recipients: 270,415 Nations War Wounded: 226,016 – Slackers and Slouch Hats)

And I would have thought about the number of disabled friends who have told me that it will take 'one more thing' - one more check to see if you are 'still disabled', one more fight, one more slur, one more hurtful word - for them to enact their 'exit plan'.

It wears you down, eventually, that ableism. I wonder, too, if the experiences of other marginalised groups aren’t so different. The speculation about your sex life, the perception that a child should have a mother and a father, the questions to an Australian person of Asian descent about ‘where you come from – no, where you ACTUALLY come from?’

It’s not about political correctness, it is about thoughtfulness, and it is about respect.

If only everyone was George Takei.

Wednesday, August 6, 2014

Thirty Three Times in Thirty Four Days

Tomorrow, a man named Peter Edward Kasatchkow will be sentenced for 33 counts of sexual assault against five women with disability.

Mr Kasatchkow was a taxi driver, and as such, held a position of trust. He routinely drove people with disability in his Maxi Taxi to and from work or other places.

Most of the people Kasatchkow transported had disabilities that severely impacted upon their lives. The 29 year old woman who caught his taxi on February 3 was no exception. She has cerebral palsy, uses an electric wheelchair and has great difficulty speaking. When Kasatchkow drove her to a racecourse car park at Ascot and sexually assaulted her, he probably never dreamed that she would be able to alert her support workers to the abuse, much less ask them to record his registration number.

In WA, only police are able to access taxi security camera footage, which is used to provide evidence in court when taxi drivers have been assaulted. It is not monitored in any other way, and police will only access the footage if a crime is reported. The footage is routinely deleted at the beginning of each year.

Police almost certainly did not expect what they found on the security cameras. During the first 34 days in 2014, the cameras had caught Kasatchkow raping or indecently assaulting five disabled women – thirty three times.

On April 14, Peter Edward Kasatchkow, 58, of Dianella, was charged with 29 counts of indecently dealing with an incapable person, one count of aggravated indecent assault and three counts of aggravated sexual penetration without consent. He pleaded guilty to all charges.

If it had not been for the fact that his last victim had been both brave and articulate and had communicated the abuse to the authorities, there is no doubt that Perth women with disability would continue to be raped on a daily basis. Some people cannot speak, you see. And nobody would ever know.

This is what keeps me awake at night – how many more victims are there?

The security camera started rolling on January 1, and by February 3 Kasatchkow had raped or indecently assaulted thirty three times. It’s highly unlikely that Kasatchkow, who had worked for the Department of Education and who had transported people to and from school and disability service settings for years, had suddenly developed a New Year’s resolution to rape a passenger a day. Predators generally have a history of predatory behaviour.

Sadly, this story is nothing new. The Royal Commission into Institutional Responses to Child Sexual Abuse is currently hearing evidence about the St Ann’s Special School case in Adelaide. Bus driver Brian Perkins abused up to thirty children, but the police and school authorities did not tell all the parents whose children had come into contact with Perkins. And for ten years, those children developed ‘behavioural problems’ – one boy sobbed inconsolably when he saw Santa (Perkins had a beard), another family resorted to sleeping in the garden shed because their child screamed himself hoarse every night after the lights were out.

The abuse – and the fact that Perkins had been caught with naked photographs of many schoolchildren, but was never convicted after escaping bail – was only discovered and raised publicly after a chance encounter between parents.

The statistics are telling. Women with Disabilities Australia say that women with disabilities are denied their right to freedom from exploitation, violence and abuse – they experience alarmingly high rates of all forms of violence and abuse from a range of perpetrators yet remain excluded from violence prevention legislation, policies, services and supports. They continue to be assaulted, raped and abused at a rate of at least two times greater than other women. Both men and women with disability are far more likely to be abused than their able bodied counterparts, and people with intellectual disability are 10.7% more likely to be victims of sexual assault.

You’d expect a public and immediate response from the taxi and transport industries about the safety of vulnerable people. But in the wake of the Kasatchkow scandal, there has been nothing but a resounding silence. The last victim’s mother reports that she received no contact or offer of support from the taxi company, despite the fact that her daughter is too frightened to use wheelchair taxis and is effectively trapped at home – the cost of hiring a wheelchair accessible van is about $1000 a week. Neither did she receive a call from the Taxi Council, who rather defensively say that they acted appropriately by immediately suspending Kasatchkow’s license. They’ve also implemented a taxi driver demerit system – if you have a car crash or carry out a criminal activity, you can now have demerit points accumulated against you. There are no plans to monitor the security cameras, nor make changes to the system in other ways, they say – they don’t have the resources.

On Friday, a number of Western Australians with disability and their families will be present to bear witness to the sentencing of Peter Edward Kasatchkow. But how many of them will be able to get inside? When I phoned the District Court to ask about the accessibility of the courtrooms, the staff member told me that there was only one wheelchair accessible space in each court room. Despite the fact that the District Court building was constructed only five years ago.

All five victims use a wheelchair.

We people with disability are routinely denied access to justice, education, transport, services, facilities and employment. On Friday, I will join others who are thinking of the victims. Inside and outside the courtroom.