Saturday, July 26, 2014

You Gonna Be the One that Pays Me?

I wrote you a song.

It's for all you 'token people'. Not just people with disability, but anyone who has ever been asked to 'be part of a working group/focus group/committee' to provide 'a voice for your people'.

That's us. The guys sitting around the table, day after day, passionately advocating on behalf of our fellow disabled people, indigenous people, people from CALD backgrounds, LGBTI communities. Our presence is valued, they assure us, and we are always profusely thanked for our passionate words and lived experience and valuable input.

Then why do they insist on trying to pay us with movie tickets and taxi vouchers and left over food?

You sit around the table with a bunch of people who are being paid by the hour. The service providers and the executives and the junior who just started last week and who is really keen to learn. And you spend the next three hours talking about the legislation and the service standards and giving your recommendations and advice which you have garnered from years and years of experience. Then they offer you the stale sandwiches and floppy fruit platter as you walk out the door.

So I wrote you a song, with apologies to Liam and Noel, and with thanks to the fabulous Kelly Cox, who inspired me to write it.

Crank up the volume, friends. And next time, ask them if you can change the meeting date to a Saturday.

You Going To Be The One Who Pays Me?

(to the tune of 'Wonderwall)

Today is gonna be the day

That the meeting at that place is on

By now I should’ve somehow

Realised getting paid aint on

I can get all those taxi vouchers

For my work today but no cash now

Back beat, the word is on the street

That disabled people have a voice

I’m sure you’ve heard it all before

That it’s all about control and choice

I don’t believe that anybody likes

To just be paid in taxi vouchers

And all the working groups and all the meetings

You go for free but it’s okay, you’re eating

And at the end of the day

Some guy he says to you

You can take the leftovers…

Because maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

Today was gonna be the day

And I’m gonna throw it back to you

By now I should've somehow

Realized what I’m going to do

I’m going to call a meeting, baby

On a Saturday

Will you come now?

And all the stale sandwiches and the fruit platters

I need to pay my bills not just get fatter

How hard is it to understand that we need payment too?

For our expertise…

I said maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

I said maybe

You’re going to be the one that pays me

For my point of view

Who is paying you?

I said maybe

You’re going to be the one that pays me

You’re going to be the one that pays me

You’re going to be the one that pays me

Friday, July 25, 2014

The Minister said…what?

There’s a war going on.

You might not see the war, because it is a complicated political war, with nuances deep within the disability and government sectors.

Wars are organised conflicts that are characterised by social and economic disruption. There are often prisoners, who are held to isolate them or exploit them for their labour. And in all wars, there are casualties.

I read this article by NSW Minister John Ajaka this morning. Mr Ajaka bemoans the politicisation of disability in NSW, and reminds the population that the NDIS has nothing to do with the closure of institutions like Stockton, tells us that he doesn’t want to get the positive NDIS stories get lost in a political battle. So far, all good.

Then half way through the article, there appears a line that makes me blink and look twice.

‘Regardless of the NDIS, large residential centres are being redeveloped and every existing resident, including the high-needs clients, will be catered for.’

Excuse me, Minister? You said…what?

For those who don’t know about the history of institutionalisation and devolution in NSW, I’ll give you the short version.

During the 1990s, the NSW Government came under pressure to fund the transition of the state’s (then) 47 institutions for people with disability in the wake of a succession of public scandals associated with abuse and neglect at these institutions.

In 1998, the NSW Government made a commitment to close the institutions by 2010.

By 2006, the NSW Government said that they’d changed the timeframe from 2010 to ‘over time’. They said they’d look at a wider range of accommodation and support models, because the nature of institutional care restricts the rights and opportunities of the people with disability who live in these settings.

By 2010, there were still over 1600 people with disability living in institutions, with the largest centre holding over 400 people.

Then came the NDIS –and with it, the agreement struck between O’Farrell and Gillard for NSW to transition all of its disability services to the non-government sector by the NDIS implementation deadline in 2018.

And therein lies the cause for the war. Parents with aging children at Stockton protest strongly that the institution is their home. Nurses and staff at Stockton protest that they will lose their jobs. Disability advocates protest that institutions are outdated models of care that are proven to restrict human rights and community inclusion for residents, and so the battle carries on.

Here’s the bottom line – the NDIS and the closure of Stockton and other institutions is undoubtedly unrelated – the closure of Stockton was decided fifteen years ago, the NDIS is not tied to bricks and mortar. But once the institutions close, it becomes related – because what then?

In 2013, Ajaka argued that institutions ‘have long been viewed as antiquated models of care’ and that other models of care like group homes ‘are able to be situated in the community, which offers greater inclusion for people with disability and opportunities to participate in what their local community has to offer’.

But today, it seems that he’s changed his mind – or at least his public viewpoint.

‘Regardless of the NDIS, large residential centres are being redeveloped,’he says.
And some of the devolution stories to date back that up – stories of institutions closed but others reopened ‘further away from town’ or slightly smaller. New ‘innovative’ centres with sensory gardens and fresher paint. Lipstick on a pig, some say, when people are still physically separated from the community, when large numbers of disabled people live together with little private space, set routines and restrictions on personal freedom and autonomy. When people are not encouraged to be part of the rest of the world or develop relationships or social networks outside of where they are shut in.

We close the institutions, and what then? The State is saying that it no longer has a role, because the NDIS will be the panacea for all evils, including institutionalisation. In other states, like WA, government is privatising only sixty percent of their residential services. Despite the fact that the majority of abuse and neglect has occurred in government settings, many people with disability and their families are against wholesale privatisation of government disability services because there will be no ‘place of last resort’. The place that people who have no family or who are ‘complex’ people can go if a non-government provider refuses to accept them. If we are not included in affordable and social housing or shared equity and partner arrangements, or afforded adequate and appropriate support, what then?

The stories roll in. Parents and staff protesting in the streets. Human rights advocates protesting the failure to close the institutions and the dressing up of bad old models. Politicians trying to assuage angry voters with stances that waver when votes or funds are at stake. A war played out through newspapers and union meetings and dark meetings in government offices.

In this war, you cannot see the casualties and prisoners of war. They are hidden behind old style ha-ha walls, shut in behind best intentions and political gain and fear and anxiety. Their gatekeepers are soft-spoken and well meaning, but isolate them from freedom and advocacy as effectively as if they were wielding machine guns.

We must shut the institutions, and we must ensure that people with disability have the right to support and the same freedoms as the rest of the community. And we must, together, work out a way to do that.

“It took a while to get used to living in the community…for most of my life, I did not know what happiness, friendships or choices were.” - Kim Walker, a former resident of Stockton Institution

Monday, July 21, 2014

The Right to Something Real

I'm reading a brochure at the moment. It's for a cluster house proposal, a purpose built congregate care facility for people with disability. In the literature, it has the title 'Better than a Nursing Home.'

I beg your pardon?

It's symptomatic of the way that we promote 'second best' as something desirable in the disability sector.

'Better than a Nursing Home'. You'll be more happy there than you would be in a nursing home or a hospice. The brochure goes on to talk about 'your happy family' - 'there is no build up of resentment towards you', it says. It's like those other brochures that talk about 'accommodation' and 'residential settings' and a 'home-like atmosphere'. Or becoming an 'intern' to learn 'vocational, work readiness, training and skills development'. Or being a 'participant' instead of an 'employee', in a place where you and the people supervise you have lunch in different lunch rooms. Wank words, weasel words, to convince us that something substandard is almost as good as something real.

You, my dear little disabled friend, can almost have a real life.

You can go and work for free in the name of 'participation'. You'll wash cars or shred paper or pack boxes or strip electrical cable. If your sheltered workshop is up on the lingo, you'll be working in a 'social enterprise' where you might be recycling something or working with other disabled people to do something worthwhile in the community. It's almost a real job, with no mention that you 'interns' or 'work experience participants' will be paid well under minimum wage, sometimes at less than a dollar an hour.

It's almost a real job, right? You'll be learning valuable skills and you can talk about that for forty years when you sit with the other 'guys' in the disabled-people only staffroom.

You can almost have a real home. Institutions, group homes, cluster villages, places which are 'purpose built' for your 'individual needs'. And we're proposing more and more of them every day, despite this new rhetoric about human rights and individualised service settings. Autistic? Try the 'Never-the-Less' farm, proposed by the 'Shouldering the Journey' Foundation and based on the poignantly named 'Bittersweet Farms' model in the US. It's a long way out of Brisbane, but hell, it will be quiet. Safe, and secure and 'far less challenging' than the real world. And, cocooned in your safety and your onsite one shop stop resources, you'll never get to do or see the things your peers are doing - it's hard to see through cottonwool.

What about a real education? Ah, a far trickier argument, because mainstream education often doesn't offer any support, so 'special' versus 'mainstream' is often not a choice at all. But have you ever seen a novel - as opposed to an information booklet - written in easy English? Fifty Shades of Grey for the Raunchy Middleaged Woman with an Intellectual Disability? What about those endless 'life skills programs', where you learn over and over again how to make a cup of tea but never how to pick up a bloke at a night club? How many years did they spend teaching you to tie your shoelaces, instead of buying you velcro fasteners and teaching you to dance?

Better than A Nursing Home. It's like your doctor telling you he won't treat your herpes, because it's better than syphilis. A car salesman telling you he'll sell you a bike, because it's better than walking. E-Harmony telling you that you need a platonic penpal, because it's better than a tub of Vaseline.

Why do we settle for second best? Why do we believe the myth that we are second class citizens? And when are we going to make it change?

Almost a real life. We deserve better.

"When I believe I can, then I acquire the ability to do it even if I didn't have it in the beginning" ~Gandhi

Monday, July 14, 2014

Parking Oversights from the Not Very Smart

What do you do when the disability community is outraged about being charged for parking at public railway stations?

Label the decision an 'oversight', of course. And remedy the situation by stinging members of the general public with a two dollar a day parking fee, but letting disabled passengers park for free.

It's not an equitable decision for the general public, unless you take into account that Australia ranks 21 of 29 OECD nations for employment of people with disability. And with barriers like the cost of disability, the slashing of the disability support pensions and societal attitudes to people with disability, a two dollar a day penalty is hardly an initiative that will promote inclusion for Australians with disability.

That's why we were gobsmacked to receive these photographs at the Australian Disability Parking Wall of Shame. They show one of two accessible Transperth parking bays with the universal access symbol removed - and a 'SmartParker' machine installed. In June, the government announced magnanimously that they would waive the two dollar fee for ACROD users, without mentioning that they would consider removing parking bays in order to install the new system.

These images were taken at Mosman Park railway station, and we're yet to hear if there has been a wholesale removal of accessible parking bays across the board, or if this is merely an 'oversight'.

One thing's for certain - if it's an oversight, someone's not very 'smart'.

Friday, July 11, 2014

Why We'd Never Publish A Photo Of The Queen In A Diaper

"An image of an incontinent Queen Elizabeth wearing a nappy has been published in a News of the World publication.

The Queen, who did not give her permission to be photographed, was sleeping at the time, wearing only a continence aide.

Buckingham Palace cleaner Anita Bath said that the use of the image was justified in the fight to improve the working conditions of cleaners across the United Kingdom.

'The image accurately depicts the condition that older people find themselves in, and consequently the hardship that is imposed upon underpaid cleaners across the UK,' she said.

'I have personally had to clean up not only the Queen's urine but also an occasional royal turd.'

The Queen was not asked for comment."

Funny, right? And it would almost certainly never happen. Why? Because the Queen does not have a disability.

This image is the cause of much current controversy between people with disability and carers. The image, which depicts sixteen year old Justin Lee wearing a diaper, 'depicts how being carers affects ageing parents'. And NPR argues that 'Justin is not in a position to tell them what he does and does not want.'

Isn't that a good reason NOT to publish the photo?

I look at the photograph, of a loving father carrying his son, and I think, 'You poor man. Your back must hurt, that boy weights 100 pounds. He's wearing a nappy - he is just like a baby. You have been picking him up like that since he was a baby. You poor man.' And that is what the image is supposed to invoke.

Nowhere in that image do I see anything of who Justin is. And why? Because Justin has a disability. This image portrays him as 'burden', rather than 'person'. Literally.

Dignity and privacy is a tradeable commodity. It is important that we accurately portray the plight of unsupported caregivers, so we will use this image of Justin in his nappy, being carried, helpless. Pity porn at its finest.

I wonder if Stephen Hawking would allow someone to photograph him wearing a diaper. His first wife, Jane, told the press that it was “difficult…to feel desire for someone with the undeniable needs of an infant.” They divorced in 1990.

And I wonder what would happen if Justin and his family were supported properly and if they were provided with an electric hoist. And if the 'need' for this kind of story was no longer there - would we then see a photograph of Justin in the surroundings that he loves best, wearing his favourite football jersey, laughing with other young people?

That's what the National Disability Insurance Scheme is supposed to do. Support people so that parents can be mothers and fathers, siblings can be brothers and sisters, people with disability can be individuals, rather than burdens.

I wonder what the story would look like if it was about Justin, not his physical care needs.

Let's find out.