Disability rights: a journey
The NDIS has the potential to take Australia from keeping people with disability hidden away to true inclusion
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or centuries people with disabilities were viewed as poor helpless cripples, blind beggars, dumb idiots. For centuries they were outcasts, denied recognition as human beings. People with disabilities were cast out from families, or hidden behind closed doors and curtains for fear that they would bring shame and cause the family to be ostracised. In the mid-20th century, in part in response to the worldwide polio epidemic, a solution was put in place to get the crippled beggars off the streets and into a safe, secure environment. This solution was the development of charity/welfare institutions where children went early in life – to live, to go to school, to work and to die. These institutions were often parent-driven with the best of intentions: parents wanted to keep their children safe from harm; they wanted their children to be looked after. But because institutions in the 1950s provided a birth-to-death service, they became places that kept people with disabilities out of sight and out of mind, separate from the mainstream communities.
NDIS facts and figures At end third quarter 2013-14: 6500 people deemed eligible 5400 tailored plans approved Average package costs $32,000 (lower than recommended $35,000) Trials in every state of Australia, except Queensland, which will start in 2016
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Rhonda Galbally National Disability Insurance Agency Board member and NDIS advisory group deputy chair
These institutions looked after children right through to adult life and adults with a disability were seen as vulnerable, weak, unable to make decisions or take responsibility for themselves. In the late 1960s the disability rights movement started in the USA, generated by the Vietnam veterans coming back from an unpopular war, many with multiple and profound disabilities, both physical and mental. The vets refused to be put away into the American equivalent of our institutions. These were grown men who had tasted life before the war. They were very different from those who were institutionalised from a young age.
Independent living
The Vietnam vets brought disability out of the closet and into the streets. They began to demand rights that had never been thought about for disabled people before, much less acted on. The context for the Vietnam vets and their struggle for disability rights in the USA also included western liberation movements such as women’s liberation, sexual revolution, gay liberation and youth liberation. By the mid-1970s, Australia had connected to the US independent living movement and our own disability rights movement took off, led by a small group of people with disabilities, supported by a contingent of social workers. Social work by then had moved from a charitable individualised approach to community de-
velopment, advocacy and a sophisticated understanding of the impact of external structures and systems and their need to include people. I inadvertently joined the disability rights movement when I began working at a council of social service, VCOSS, in 1979.
Nothing about us without us
I was sitting at my desk preparing a policy paper on housing for disadvantaged groups when the phone rang. There was a slurred, angry voice on the phone. Sounding drunk, Hal Fitzpatrick presumed to challenge me. “What do you think you’re doing, designing a housing policy for disabled people?” he demanded. “What do you mean?” I snapped back. “This is my job, I’ve researched everything.” Hal took a long breath: “Who do you think you are, deciding for us what we want for our housing policy?” “Who is this ‘us’?” I asked. “What are you talking about?” I soon found out that ‘Us’ was a group of disability rights activists who wheeled, swayed, or felt their way into my office with white sticks, wheelchairs and guide dogs. They were a feisty lot, but most of all they were all disabled, like me. The work of the Australian disability rights movement in the early ‘80s was first and foremost to fight for deinstitutionalisation. By providing everything people with disabilities needed in a