Joan Hume: PWDA 30th anniversary speech

On Saturday 16 July 2011, Joan Hume OAM, PWDA Life Member and Founding Member made the following speech at PWDA’s 30^th anniversary celebration in Sydney.

Birth of the Australian disability rights movement

Do you remember a time:

• When the only form of public transport for people with severe disabilities was the ambulance?
• When most children with disabilities were educated (if at all) away from their families, local communities and friends in segregated, isolated schools and sometimes even in hospitals?
• When deaf children had their hands tied to stop them signing to each other and to force them to learn to communicate orally?
• When married women with disabilities were forbidden access to rehabilitation from the Commonwealth Rehabilitation Service as it was assumed that they didn’t need to work? Their husbands would look after and financially support them.  Forever.
• When selling pens at the railway station or shoving unspeakable objects into cardboard boxes in a sheltered workshop for a couple of dollars a week was seen as a smart career move?
• When being pushed in a wheelbarrow was the only way a child with polio from a poor rural background could get around?
• When a beauty queen with a perfect face, perfect speech and a perfect body was chosen every year to represent, raise funds for and speak on behalf of all people with cerebral palsy across Australia?  Did you ever see any woman with cerebral palsy chosen to symbolise her organisation except in a pitiful photo on the charity boxes in milk bars?
• When you turned up at your local cinema/restaurant/church/footy match in a wheelchair or with your guide dog only to be forbidden entry because you were a fire hazard, or the sight of you was offensive to other patrons, or turned them off their food, or there were too many steps, or dogs were banned because they were too noisy or believed to be a health risk. Only to be lectured ad nauseum: we don’t need to provide access because nobody with a disability ever comes here anyway.  Right?

Not too long ago.

And I haven’t even touched on some of the more complex bioethical issues around enforced sterilisation of disabled girls, late term abortions for disabilities such as Down syndrome or short stature, deliberate “medical” killings of newborns or euthanasia on the grounds of disability alone.

All of these examples from the lives of people with disabilities have occurred within the last 50 years, some within the previous 30, some even continue today.

Revolting isn’t it?  Enough to start a rebellion.

The Disabilities Rights Movement in Australia was born from the passion, the anguish, the outrage, the despair and the explosion of frustration caused by centuries of exclusion, humiliation, prejudice, poverty, disempowerment, pity, condescension, charity, segregation, oppression and neglect.

It was a movement whose time had come.  And its stirrings were world-wide.  The United Nations had inaugurated the Declaration on the Rights of Disabled Persons in 1975. But we were also stimulated and inspired by the other great 20^th Century political, social justice and liberation movements which preceded ours: unionism and workers’ rights, black civil and gay equal rights, feminism amongst many others.

We were fed up with professionals of whatever persuasion who, of course, always knew better, who bullied us, spoke for us, told us what we needed and how to do things.  We were denied the strength of our own voice and the powerful truths of our lived, embodied experiences of disability.

We wanted things to change.

People with Disabilities Australia began humbly as the Union of Handicapped People in 1980.  A meeting held in May of that year at the Queen Elizabeth 11 Rehabilitation Centre and chaired by the late Ben Meads, called for the establishment of an organisation that crossed disability lines and united all people with all disabilities, regardless of their medical diagnosis, level of intellectual development or psychiatric condition.

It was the first of its kind in New South Wales and it was beginning to happen right across Australia. Although the catalyst was the forthcoming International Year of Disabled Persons, scheduled for the following year, the smell of insurrection had been in the air for a least a decade.

Most of the existing disability organisations had focussed on a particular medical condition or a charitable approach to disability.  All were competing for the public and private dollar mainly to provide specific services.  All very laudable. Many of them still do this and very well.  But very few, with the possible exception of the Australian Quadriplegic Association, were into advocacy, social change and political activism spearheaded by and for people with disabilities.

So the birth of a new organisation with a radically different perspective of the status and capabilities of all people with disabilities advocating together for political change, was electrifying.

And exhilarating.

A wonderful adventure of which I was privileged to be a part.

But no sooner had the new voice of dissent and challenge to the status quo begun to assert itself when there was a offended squawk  from an unexpected source: “You’ve stolen our name”, cries Barrie Unsworth, the then Secretary of the NSW Labor Council and later the NSW Premier. He claimed, whether from guilt or ignorance, that we’d usurped the name of “union” and it had to go or he’d sue. We changed our name to the Handicapped Persons’ Alliance.

The fruits of the International Year of Disabled Persons (IYDP) were bountiful, both here in Australia and globally.  It witnessed the birth of Disabled People’s International at its first World Congress in Singapore in December 1981. The NSW IYDP Secretariat funded the Disabled Persons’ Resource Centre, The Handicapped Persons’ Alliance and the formation of regional councils based on the IYDP Committees centred in major rural and regional centres. These disparate groups all merged under the umbrella of Disabled Peoples International (NSW) in 1984.

In its first decade, collectively the disability rights movement achieved:

Firstly and critically, was the united, proud and increasingly insistent voice of people with disabilities.  Secondly, were our growing skills in self advocacy, lobbying, organisational management and informed, articulate debate. We raised issues or complained loudly in letters to newspapers, politicians or anywhere else that was relevant.  This led to invitations of our members to participate on government advisory bodies and play a more decisive role in our local communities and non-government organisations.  Thirdly, we took to the streets: we demonstrated noisily with placards and megaphones.

The first demonstration I ever attended in a wheelchair was the protest at the opening of the inaccessible Eastern Suburbs Railway in 1979. Genni Batterham inspired it but the AQA organised the wheelchair brigade of placard wavers.  We were abused, jostled and screamed at: “Go back to your nursing homes, you’re spoiling the view.”  An embarrassed Premier Neville Wran promised action and two years later he introduced wheelchair accessible taxis and the Taxi Transport Subsidy Scheme.  This scheme gradually spread to other states.  So direct action can bring results.

We also achieved:

• The introduction of national aids and appliances scheme, now administered by individual states
• The Attendant Care Scheme whereby people with disabilities control their own personal care support
• Amendments to states’ various anti-discrimination laws to include disability as grounds for complaint, culminating in the Commonwealth Disability Discrimination Act 1992
• Improvements in access to public buildings, public spaces and transport, including air travel
• Expansion of the Home and Community Care Programme to include younger people with disabilities
• Better equality of access to education especially in the post school and higher education sectors

These are but some of our earlier triumphs.

But there is so much more to be done. We are still striving for a more just and equal society.  We still struggle against stigma and exclusion and poorer services in all aspects of our lives: whether it be in trying to get a job or merely wanting to sit next to our partner at the Opera House concert hall. But we are much stronger now, we are not invisible anymore and we now have avenues of complaint and redress which weren’t available a generation ago.  People with Disabilities Australia stand up and take a bow.

Movers and shakers of the 1980s: Handicapped Person’s Alliance and Disabled Peoples International (NSW)

Ben Meads, Graeme Innes, Robert Wood, Brian Newtown, Kevin and Patricia Byrne, John Roarty, Les Hume, Jenny Stanzel, Ross Soutar, David Brice, Ian Irwin, Franz Weber, Brian McLeod, Marilla North (Eidlitz), Rosina Grosse, Ian Cooper, Jacob Baldwin, Noel Hiffernan, Wayne Best, Ron White, George Peterson, Laurie Alsop, Hazel Freed, John Ahern, Alisa Coleman, Pat Quin-Boas, Neil Sleep, Fiona Strahan, Kali Wild, Joe Harrison, John Moxon, Margaret Tucker, Terry Fletcher, Joe Mannix, Faye Druett, Heidi Forrest, Marushka Hanak, Wendy Potter, Joan Timperley, Bronwyn Moye, Jan Daisley, Col Casson

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