Last week, premiers sat down with the Prime Minister to decide on the trial sites for the proposed National Disability Insurance Scheme (NDIS). Conservative premiers initially refused to participate, instead demanding that the Prime Minister institute a Medicare-style levy. Reporters blamed the PM for the failure to make a deal and, perhaps surprised by the public backlash they then received, the Victorian and NSW premiers eventually agreed to contribute some funding to support a local trial in their States.
Despite the NDIS's roots in conservative ideology, GetUp also put the weight of its email list behind the scheme. The Greens, despite previously campaigning against voucher schemes in education, are supportive of this voucher model of disability funding.
So here we are: the conservative states are demanding increased taxation to pay for increased services, and progressive groups are demanding the implementation of a market-based, individualistic funding model that will turn people with a disability into "potentially empowered consumers". The cognitive dissonance, it burns!
But why does any of this matter? Surely any funding is better than none? What could possible be wrong with supporting a disability funding model that is "an entitlement-based funding mechanism, which will provide flexible, person-centred supports so that people can participate in ordinary, daily life."
For starters, how about this study of a Queensland program of individualised funding that found:
"... few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated that they should receive."
We are citizens, not consumers. As a citizen, I have access to a range of services that are provided to everyone, like roads, schools, the PBS and local parks. I'm not assessed as to my need for them, and then asked to go out into the market and buy them. That would be stupid, right?
Secondly, the social model of disability is the accepted paradigm that people with disability have used since its inception in the 1970s. That model, from the leading academic in this area, says:
"For too long, this individual, medicalised model of disability has dominated disability policy and service provision The medical view of disability tends to regard disabled people as 'having something wrong with them' and hence the source of the problem... [the social model] is an attempt to switch the focus away from the functional limitations of individuals with an impairment on to the problems caused by disabling environments, barriers and cultures."
Or put another way:
"Much of the public world is structured as though everyone were physically strong, as though all bodies were shaped the same, as though everyone could walk, hear, and see well, as though everyone could work and play at a pace that is not compatible with any kind of illness or pain, as though no one were ever dizzy or incontinent or simply need to sit or lie down."
Thirdly, and 20 years ago, the then Labor government enacted the Disability Discrimination Act. Parliament was full of speeches proclaiming the fundamental rights of people with a disability to live a full and dignified life, with access to jobs, buildings and transport.
Brian Howe, Minister for Health, Housing and Community Services at the time, said:
"The Government began the process of expanding opportunities for people with disabilities in 1983 with the comprehensive review of programs and services for people with disabilities — the handicapped programs review. The outcomes of this review culminated in the implementation of the Disability Services Act in 1987. The Act requires that services for people with disabilities be provided in a manner consistent with their rights as Australian citizens and as human beings. These include the right to dignity, privacy, choice and the fulfillment of their capacities to contribute fully in community life."
The then-Opposition supported the Bill, despite their concerns that surgeons could be forced to operate on people with HIV and that people with disability would be able to serve in the armed forces.
So here we have, after decades of knowing that there are societal and structural barriers for people with disability to engage fully as citizens and the introduction of legislation to change this, supposedly grown-up politicians unable to engage with anything other than petty squabbles.
And to make it all even more galling, the last two decades have brought extraordinary prosperity to Australia, where government coffers overflowed with revenue which was then handed out to make sure the rich could have cheaper private health insurance and low taxed superannuation.
Two decades where significant money was available to fund the real and profound needs of people with a disability. To comply with the measures in the Disabilty Discrimination Act. To recognise the rights of all Australians to be able to participate in the world.
And now that there are a few crumbs on the table, in the form of a trial of an insurance scheme, LNP Premiers have the audacity to play politics? When their side of politics started the cuts to disability support pensions and increased the cost of medication?
Now where was the ALP when disability pensions were being cut and curtailed? Oh yes, that's right — just waiting for their turn to do the same. Thanks for chiming in last week GetUp, but where have you been in advocacy for accessible public spaces? Where have all sides of politics been in responding to all the myriad of reports that have called for increased disability funding before this?
I'll tell you where — absent. This is not some abstract, philosophical argument. This is my life they are talking abbout.
Here's a message for the politicians on show last week. I'm no cute child for a politician to have a photo opportunity with. My disability is ugly, messy and disfiguring. You'll never see my photo in some annual report as the beneficiary of corporate largesse. I'm old, creaky, and damn pissed off.
As Stella Young says, I'm not here for your inspiration. I don't want your charity or your pity.
In another time, I would have been housed in a leper colony or an institution. As it is, my hospital stays add up to months. I have no choice over my medical treatment or my doctor or even access to medication that would give me a pain-free life.
The system as it is is broken. In that much I agree with the Every Australian Counts campaign. But what I won't agree with is that the NDIS will change the societal or structural disadvantage of people with a disability. Or that the whole faux debate of the last week is anything other than conservative premiers again trying to shirk funding for disability services.
Think back to those original words spoken in our Federal Parliament, nearly 20 years ago, on the passing of the Disability Discrimination Act. How many of them were ever implemented? Precious little. Why? Because to them I am not a real person. I do not have the same rights as they do. And to expect more is to be some kind of uppity cripple.
So fuck you all. I hope you never know what it's really like to have a disability. Because it's blatantly clear that you have no idea.
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