Mark Butler (Port Adelaide, Australian Labor Party, Shadow Minister for Environment, Climate Change and Water) Share this | Link to this | Hansard source

It is a great privilege to rise and talk on the enormous contribution of Anne Deveson to Australia over a very, very long period of time. I did not know Anne personally, but I knew her daughter, Georgia Blain, who tragically passed away two days before Anne did. Georgia was a very close friend of my family. But my reflections on Anne's contribution really are informed by the honour I had of being Australia's Minister for Mental Health and Ageing over three years. In mental health particularly—the understanding that Australians have of the challenges of mental illness, particularly severe and persistent mental illness—Anne Deveson made an unparalleled contribution to Australia. I think it is important that we recognise her enormous legacy in that sense.

I think her overall contribution to Australia is reflected in the fact that her passing was recognised by the Prime Minister, the Leader of the Opposition and the parliament before question time. As you know, Deputy Speaker, it is a very rare occasion for the passing of a person who has not served as a public official to be recognised in that way. I think that recognition reflected across the parliament a deep sense of Anne's long and very broad contribution to Australian life. As the Leader of the Opposition said, Anne, over 40 years ago, was a member of a landmark royal commission initiated by Prime Minister Gough Whitlam into human relationships that led to quite a signature change in the way in which Australians thought about homosexuality, about a woman's right to choose and about the responsibility that society has to build refuges, particularly for women and children fleeing domestic violence. These things seem a matter of course in 2017, but they were incredibly difficult, highly contested social debates back in the mid 1970s, debates in which Anne played an extraordinarily important part—along with others, but she herself played an extraordinarily important part. Those decades ago, it became clear why Anne was able to play such a significant role in talking about social change: because she was able to combine a deep sense of compassion and a deep sense of social justice with extraordinary communication skills and a very high profile in this country. That, to my mind, is really what Anne was able to do in the area of mental illness.

Our challenges in the area of mental illness and also in relation to Alzheimer's—which I will talk about briefly as well—have been a challenge of bringing these issues into the open. They are not rare. As you know, Deputy Speaker, and as other members of this House know, very few families escape without confronting the challenges of mental illness. Anne has confronted them very deeply indeed. But for far too long in this country it has been an invisible story. It is one talked about within living rooms; it is not talked about in the broader social discourse. Happily, it is talked about more than it was when we were much younger than we are now, Deputy Speaker, and in large part that is due to Anne Deveson. She brought these things into the open, but in bringing them into the open—in having public discussions and public stories that reflected the experience of so many Australian families—she was also able to use that open debate to start to battle stigma. In that sense, we owe Anne an enormous debt for her legacy.

But I do want to say that Anne's challenge was a particularly deep challenge. Her experience, as people know, was with schizophrenia—a low-prevalence but very severe and persistent part of the family of mental disorders that, back then, was not well understood and not particularly well treated. I think it is important that, while we recognise the extraordinary contribution Anne made to lifting our understanding of schizophrenia, there is still a long way for us to go. Over the last two or three decades, we have made enormous strides, I think, as a society, particularly in our understanding and compassion towards the more high-prevalence disorders like anxiety and depression, but we must be honest that our understanding and our compassion as a society for the psychotic disorders, particularly schizophrenia, still leaves a lot to be desired. I remember, while I was Minister for Mental Health and Ageing, being told by a professor that a 21-year-old today diagnosed with schizophrenia has a lower life expectancy than a 21-year-old who is diagnosed with HIV/AIDS. It is not that long ago that that would have been unimaginable. It says two things. It says an enormous amount about the strides that we have made in treating HIV, and it says an enormous amount about the challenges that the many, many Australians living with schizophrenia face in relation to not only their mental illness but also a whole range of comorbidities associated with physical illnesses.

Anne's lasting legacy is not just the extraordinary contribution she made to Australian society by talking about her own story and writing that book about her much-loved elder son, Jonathan; it is also the establishment of a framework to drive that cause of a better understanding of schizophrenia through what we then called the Schizophrenia Australia Foundation and we now know as SANE Australia. This is a wonderful organisation, led for so many years by Barbara Hocking—who, tragically, also died only in the last few months—and now led by the wonderful, incomparable Jack Heath, and is still doing wonderful work in this area.

Late in her life, as both the Prime Minister and the Leader of the Opposition mentioned in their very fine remarks yesterday in the House, Anne also discovered that she had Alzheimer's, as her mother, her grandmother and her aunt had had. When I was Minister for Mental Health and Ageing, one of the things that really struck me about our experience as a community with the family of dementia illnesses, particularly Alzheimer's, is our inability to talk openly about our experiences with them. I remember talking to Alzheimer's Australia very early on in my time as the minister and trying to think of people other than Hazel Hawke and her family, who had really taken the country on a journey, in a public way, with their experience of Alzheimer's.

Like the family of mental illnesses, it is still a condition that is kept inside the family home, that is not talked about sufficiently in the public space, in the public arena, because we know that this is a condition that affects so many families. The number of diagnoses of dementia is climbing very, very quickly, partly because we are getting better at diagnosing it, obviously, and because of the ageing of the population. Anne, after learning of her diagnosis, again took the community into her confidence and spoke openly about her experience with Alzheimer's, which was again a wonderful contribution to the community from someone who had already contributed so much.

I pay tribute to the public contribution that Anne Deveson made over decades, particularly over the last couple of decades. In my small experience as the Minister for Mental Health and Ageing, her contribution to a vastly overdue challenge that our country had to better understand and better support people experiencing mental illness, and their families, was really quite unparalleled. It is not alone, but it was an extraordinary contribution that she made.

Having some personal connection to her family, through Georgia, I understand the depth of grief being felt by that family at the moment. It is a grief that is reflected at the public level, because that family was so well known to all of us over so many decades—really, from the time that Jonathan, Georgia and Josh were very little children.

On behalf of so many people who have benefited from Anne's work in the area of mental health and, very recently, in the area of dementia, I thank Anne for her contribution and send our commiserations to her remaining son, Joshua; and to Georgia's partner, Andrew, and their daughter, who I understand is phenomenally talented, Odessa.

Joanne Ryan (Lalor, Australian Labor Party) Share this | Link to this | Hansard source

It is an absolute privilege to be in this place and to have an opportunity to pay my respects to Anne Deveson by putting on the record the impact that she had on not just me but also my family and all the students I taught who studied the text Tell Me I'm Here. That is where my life intersected, if you like, with Anne's, as did the lives of all the students across Victoria over several years who had the privilege of studying this text in year 12 English. It was an extraordinary text, and I think I am going to limit my comments today to the power of that text—to what Anne Deveson managed to do at the height of her powers as a writer and a communicator, in making the very brave decision to take perfect strangers on a journey with her family, recounting the highs and the lows in the extraordinary events of their life from Jonathan's diagnosis through to his death. It was an honour to be able to read that story. I know that, for me and for many families, reading that firsthand account from Anne opened our eyes and assisted us to reflect on the way we interact in our own families, the way we interact with society and the way that society thought about mental illness.

I vividly remember reading passages in classrooms of 25 young adult children who could do nothing but connect with Anne's children through that text. They could connect so closely to Jonathan's experience, thinking about themselves and their friends. Schizophrenia is an incredibly cruel disease that tends to come on young men in particular, or in larger numbers, at a time when they are developing their notions of themselves and are entering a world that is no longer so black and white as they go into adulthood but is filled with shades of grey. It makes the onset of schizophrenia so much harder on the individual when their own identity is being shaped and then there are those layers and layers of confusion.

I remember distinctly the first time I read that book in class, when Anne had used the word 'mad' to describe Jonathan, and how confronting it was to think in those terms. As a teacher and as someone who strove to write, I remember thinking how incredibly brave it was but, most importantly, how incredibly effective it was. Anne did not write Tell Me I'm Here, in my interpretation of the book, to shy away from the words that scared people. She did not come across in the text as wanting to say that the story of her family and the illness was different to other families. She wanted the world to understand that this was the illness and that this was the impact of the illness. I had the privilege of watching young people interact with the text and open their eyes to a new understanding of mental illness, with empathy for sufferers and for the families.

The writing that Anne did in this text was also extraordinary, and often what Anne was doing, or what it appeared to me that Anne was doing as I read it with young people, was that they heard Jonathan's voice. The young people in my classroom heard that young man's voice as he struggled with a diabolical illness. One of the most compelling lines in the book for me and for the classes that I taught—the one that the young people I taught came back to more and more often—was the single line where Jonathan recounted that it would be better to be a junkie than a psycho. The power that that had on young people thinking about mental illness was extraordinary—the notion that a disease was the worst thing that could happen to you and that belonging was so important to every individual that Jonathan was relaying to his mother that somehow he had found a place where he felt like he could belong.

There was the heartbreak, I know, for mothers around the country when they read that line—the heartbreak they felt for Anne and for mothers around the country at the time who were struggling with this. As the member for Port Adelaide said, they were alone in their lounge rooms or were with a close group of friends, whispering about the pain, whispering about the anxiety and whispering about the nights they lay awake and wondered where their child was, if their child were coming home and, if they were, what state they would be in. It was that one line and the devastation of that one line—that belonging was so important that you would rather be a junkie than be perceived to be mad or psychotic in our society. It was the pain for a mother who had fought so hard to have a welcoming home for Johnathan on his return—to know that he no longer saw home to be a place to belong. It is in that one line, in the retelling of Jonathan's saying that, that I think Anne Deveson captured the pain that was happening across the country and which still happens across the country, as families battle with themselves and with their own perceptions and understanding of mental illness.

For me, Anne Deveson opened a door in my classroom that went wider, of course, than that classroom. It reverberated around the suburbs of the children we were teaching. It started conversations that had not been had before: young people going home and coming back into class, telling me that they had relayed our classroom conversation about this text to families. The copies of that book were sometimes not in our classrooms because they had been lent to a mother, to a brother, to a cousin or to a friend down the road. It was an extraordinary thing to see.

So for that, I wanted to take this time to put on the record my appreciation for the courage that it would have taken to be that mother who put pen to paper after the extraordinary loss of losing her son not once but losing her son daily in moments when the illness took over his life. Thank you.

Sharon Claydon (Newcastle, Australian Labor Party) Share this | Link to this | Hansard source

Thank you. As a mark of respect I invite honourable members to rise in their places.

Honourable members having stood in their places—

I thank the chamber.