Disability care is still all about us without us 

Oct 30, 2023
Working together with disability.A disabled child in a wheelchair being cared for by a voluntary care worker

Any talk about disability in Australia is very likely to quickly lead to mention of ‘the System,’ which controls everything in the lives of People With Disability.

This phrase comes from Australia having started its European settlement period as a British penal colony, so we inherited ‘the System’ as a foundation stone of our society. It was the term commonly used for the British system of “transportation, assignment and secondary punishment of convicts,” as described in detail by Australian writer Robert Hughes in his book The Fatal Shore (Hughes, 1986, p. xxi). Now it has become part of the language that many citizens use to describe the Big Brother machine that is regularly directing their lives.

Convicts were shipped here to relieve the growing numbers of prisoners crowding English gaols on land, and the stinking, overcrowded prison ships sitting along the River Thames. Tragically a scenario now being revived in Britain and Europe to manage asylum seekers.

“What the convict system bequeathed to later Australian generations was not the sturdy, sceptical independence on which, with gradually waning justification, we pride ourselves, but an intense concern with social and political respectability” (Hughes, ibid.).

This national method of avoiding unpleasant truths about our origins continued over the centuries, originally with many families being in denial of their convict origins, while local communities and Federal and State governments were in denial of the frontier wars against our First Peoples.

And public administrations up and down the east coast generally continued to reflect a culture of ‘we are in charge of you, not here to serve you.’ For People With Disability, with whom I have worked and become friends over the past 25 years, this paternalistic, patronising tone still dominates delivery of the services that are meant to support their lives.

Despite the advent of the National Disability Insurance Scheme, People With Disability still struggle to gain respect for themselves as individuals and their Lived Experience, acknowledgement of their concerns, and day-to-day access to jobs, transport, housing, appropriate education and many other basics.

The recently released public response to the Federal Government Consultation Draft on the National Strategy for the Care and Support Economy  illustrates why this problem remains unsolved. And behind it lies the ongoing culture of ‘the System,’ which now includes an embedded commitment to ‘the market economy’ as its fundamental starting point.

Respondents to the draft paper showed huge concern about the ‘Quality of Care,’ 44% of them worried about access to services and person-centred care. The paper’s other way of identifying the problem was under the term ‘thin markets.’ Again this neoliberal market mentality shrinks real people’s lives into a glib phrase. Another telling response from 29% of respondents was that ‘system navigation is too complex.’

In contrast to his feedback, the Disability Royal Commission last month outlined its vision for an inclusive Australia (with) a future where people with disability: live, learn, work, play, create and engage together with people without disability in safe and diverse communities; have the power of choice, independence and the dignity to take risks; make significant contributions to communities that value their presence and treat them with respect; and are culturally safe and belong in families, communities and peer networks.”

The disconnect, between what People With Disability and their carers are experiencing from day to day, and what ‘the System’s’ architects are thinking and expressing in writing, is still huge. The Three Goals of the National Care and Support Economy program are pertinent cases in point: Quality Care, Quality Jobs, and Productivity & Sustainability.

Quality Care is summarised as ‘Person-centred services that recognise those accessing care and support as individuals and deliver quality outcomes.’ We are a long way from People with Disability feeling recognised as individuals with a seat at the table in all areas of society. And from my direct observations working alongside people, they are still feeling more like convicts in the system than valued customers of services designed around their preferences.

The Productivity and Sustainability goals are summarised as ‘A care and support economy that has functioning markets, sustainable funding and harnesses innovation to generate productivity gains.’ That smacks of management consulting jargon, not listening, person-centredness, or community-building, or understanding difference and diversity. We still have a long way to go…

As Robert Hughes mused decades ago: “Yet despite neglect, amnesia and a thousand unconscious acts of censorship, the System did continue to flourish in popular memory – as Grand Guignol” (def. a short drama stressing horror and sensationalism) (Hughes, p. 556).

For more on this topic, P&I recommends:

Crushing the human connection: Managerialism does not deliver good care

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