Living with disability in the 21st century

By Penny Mulvey

Disability advocate Dr Rhonda Galbally AO, delivering the annual Sambell Oration in Melbourne last week, reminded the 300 plus guests ‘that like being born, getting old and dying, disability is part of life’.

Dr Rhonda Galbally

Dr Rhonda Galbally

Using her own life as the yardstick, Dr Galbally tracked community and political attitudes to disability from the 1940s to the present – the National Disability Insurance Scheme (NDIS).

Dr Galbally led the campaign to establish the NDIS and is a current NDIS board member and chair of the NDIS Independent Advisory Council.

When Dr Galbally was an energetic toddler in the early 1950s, polio was scuttling families in the same way the Grim Reaper was presented during the HIV/AIDS epidemic of the 1980s. She told the Brotherhood of St Laurence dinner that polio emerged in a policy vacuum and led to a policy of disability, which became the model for many years into the future – a medical approach, institutionalising polio victims, rather than an alternative of home-based programs.

“Largely developed by parents, often in partnership with charitable groups and strongly supported by doctors, institutions for cripples were established to provide a cradle-to-grave place to live, go to school, work and die,” she said.

“While mental institutions had existed since the late 19th century, the response to the polio epidemic heralded the emergence of places similar to asylums that would contain people with disabilities for their entire lives – away from shame and fear and from the dangers of the outside world.”

A traumatised Rhonda was returned as a three-year-old after over two years of hospital care, to a mother determined to ensure her young daughter had a fighting chance at life – not one of institutionalised care.

It is little wonder Dr Galbally became a passionate advocate for all who experience disability at some point in their life journey, as she pointed out the complexities of bringing about significant policy and community change from that early model.

Deinstitutionalisation was another significant step in the 1980s, but Dr Galbally expressed sadness when she noted that even shared housing could become institutional, “providing no tenancy rights or choice over who you live with, how you spend your day, what you eat and for most residents seeing no non-disabled people except paid workers”.

“The 1990s saw the beginnings of accessible transport and accessible government buildings. There were flurries around inclusive playgroups and childcare. But basically getting governments to mandate the move towards inclusive mainstream systems and infrastructure was piecemeal and painful – one step forward and two back. For example, special schools kept making a resurgence even though all of the evidence, even at that stage, showed that mainstream education brings superior learning outcomes for disabled children.”

And now the NDIS is rolling out. For Dr Galbally it is the fulfilment of a lifelong dream to enable people with disabilities to “be in the driver’s seat of their own lives”. However it is not so straight forward, she explained, as she concluded the Sambell Oration.

Australia needs to decide whether people with disabilities belong in the world. She said that has been the key question her entire life. People with disabilities must be able to participate fully in society, not relegated to treatment with ‘their own kind’, away from the world.

“But the outcome of this struggle must be that the NDIS supports people to live their lives as citizens, enabled to become playmates, schoolmates, workmates: out there everywhere with their mates, leading ordinary lives.

“This must become what it is to be disabled in Australia in the twenty-first century.”

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