Tuesday, 16 February 2010

What has happened to disability services in Australia?

Guest posting by Chris Chappell

The Four Corners program, Breaking Point, (transcript here and Flash video presentation here) brought back for me a lot of bad memories and generated a storm of anger and outrage.

I grew up with a sister who lost sight in both eyes by the time I was about four. Some of my earliest memories are of my parents having to send her to a “school” for the deaf and blind in Adelaide – a dark, seemingly medieval, bluestone institution that no doubt provided the care and education that she simply could not get in country South Australia, but a bleak and disciplinarian place nevertheless. Despite a impressive musical talent, she was taught basket weaving as her means to achieving a modicum of independence in adulthood.

Memories of my beautifully strong and resilient sister are only dwarfed by the memories of the pain and sacrifice my parents went through in trying to find the best for her while also caring for two no doubt demanding and generally blissfully unaware boys.

As I reached my early teen years, my respect and admiration for my sister was only strengthened while I watched her cope with becoming a partial quadriplegic.

Anger and outrage soon took over when her 18 year life was taken because of poor patient care in a state-run institution.

Fast forward a decade and my first real job out of school in the early 1970’s was as what was then called a Registered Mental Deficiency Nurse (no joke!) at the then relatively new and purpose-built Strathmont Centre on what we called “Institution Hill” in Adelaide’s north – right next to Hillcrest Hospital for the mentally ill, across the road from Yatala Jail and the Women’s prison, and within a stone’s throw of a place that experimented on animals, another that trialled pesticides and genetically engineered crops, the Guide Dog training facility, the Repatriation Hospital, my old High School and the facility for para and quadriplegics where my sister had died.

While I’m not sure that my language is any longer appropriate, I nursed severely disabled people – people with levels of disability similar to those I saw discussed on Four Corners - along with those whose disability were unimaginably profound. I also nursed a couple of old aboriginal people who were by then ‘retarded’ (read, fully instituitionalised), having spent a lifetime in mental hospitals and other institutional care after being taken as children from their parents and country – not because they had an impairment, but rather because they were black and ‘difficult’ children.

I learnt there how to make beds in exactly the way taught by Florence Nightingale almost a century earlier (no joke, my pillow cover openings are still turned away from the window so that no germs will get in and settle).

I learnt too how the medical system and how institutions brutalise staff and how they in turn brutalised patients (we were modern enough to refer to them as ‘residents’ but the strictly hierarchical medical and institutional ‘system’ treated them no differently from how the physicians treated Florence and she in turn treated her patients).

I learnt how to drink Harvey Wallbangers at 7:00 am after a 12-hour nightshift and how to do drugs to escape for a few brief hours. I learnt how to care for, and how the ‘system’ could be relatively kind to, fellow staff members who had breakdowns and psychotic episodes.

I saw again how parents struggled with the pain and angst of caring for children with a severe disabled. I learnt how some fathers don’t cope with the reality that their progeny could be anything but in their image. I saw again how mothers grieve at not being able to provide the care their child needed.
In ’75 while working in what we called “the Back Wards” I went alone to see One Flew Over the Cuckoo's Nest. It made me angry.

It confirmed what I was beginning to understand about the brutalisation that institutional care breeds and fosters. It shocked many of my colleagues to see themselves on the screen.

I walked out after 2 ½ years – just a few months out from receiving my qualification – the very day I hit a patient. I had come to fully realise the effect of institutional care on me as a staff member and, in turn, on the patients I cared for.

Fast forward another few years and as a Project Officer with SACOSS in the late ‘70’s, I met and was inspired by some of South Australia’s first disabled peoples’ advocates - Jeff Heath (founder of The Link magazine for people with a disability) and Neville Kennedy. I worked with Jeff and Neville and others editing "The Rights of Intellectually Handicapped People" published by SACOSS in '79.

A visit about that time to Australia by Wolf Wolfensburger introduced me to the theory and practice of Normalisation for which I (along with many others) quickly became a passionate advocate.

Wolfensburger and Normalisation provided me with an explanation (and validation) of the insidiousness of institutional care that I had come to instinctively recognise and understand. It provided a model for how people with a disability and in need of full-time care could take a dignified and rightful place in the world.

And it is here that we come back to the Four Corners story. Wolfensburger and the Normalisation principle had an enormous influence on disability policy in South Australia and, in fact, across the world. It ultimately led to the wholesale deinstitutionalisation of disabled people in the ‘80’s and ‘90’s and even ultimately to the closure of Strathmont in 2008.

But like all good public policy, the devil wasn’t in the detail – rather it was in the implementation.

While deinstitutionalisation was right and just and welcome, it also provided governments with the opportunity to create savings.

The community-based care that replaced the discredited institutional care model was, and still is, a humane and civilised approach to ensuring a comparatively normal and empowered life for people. But it was done on the cheap.

As we saw on Four Corners, families of people with severe and profound disabilities are now paying the price. Governments (in Australia at least) and the community more generally have systemically and systematically abrogated their responsibilities to those who are least able to care for themselves.

It's about time those years and decades of ‘savings’ were paid back - now and not in three or five years as Bill Shorten seemed to be suggesting on the program.

I get angry and outraged about many things - something that my sister’s experience, the Vietnam War and people like Jeff Heath inspired in me. But I only hope that the Four Corners program creates in others the sort of anger and outrage I’m feeling now.

Footnote: My apologies to readers who have a disability or their families for any inappropriate language or labels I have used in this post. It is not my intention to offend. Rather, it reflects my length of time out of the sector.


Anonymous said...

I to was a nurse at strathmont and later glenside and agree the care given in the 70s was appalling, the move to community care in the 80s was a step in the right direction, though the promises where never forefilled, 100 million of federal funding and nothing of substance built for respite care, absolutely nothing built in south aus. in two years since the money was made availible as the four corners program points out, in 2009 a mother kills her teenage interlectually disabled son after years of abuse and violence, she is the victom of state neglect for the parents who care for their disabled children with high dependency, the state labour govt. has failed in its duty of care for these families and there fore do not deserve a third term in office, the same will apply to the families of the mentaly ill if the bed attrition in this area continues. replacing psych nurses with ngo staff who have no training or experience and can have there funding cut at federal govt. whim is a form social genocide. the sell off of glenside will be a travestry and will hurt this state in the future, this land could be utalised for a new and better way of dealing with the problems of mental disabilities and 100million bucks would be a great foundation. lets fuck off mike rann and save glenside land for the respite housing that is needed in this area and a purpose built residential school for those in desperate need. the neglect has gone on long enough make your vote count in south australia in march.
jim bourne

Chris Chappell said...

Thanks Jim - do I remember you from the olden days????

The only thing I'd add to your comments is that it has been a whole string of State and Federal Governments at fault here