Unapologetically Ita, page 15
To my great sorrow, David died from kidney failure in March 2025. At his State Memorial, held at Sydney’s City Recital Hall on 12 March, he was remembered as a prominent HIV advocate, a ‘beacon of hope’ for people living with HIV, and a community warrior. He was always true to his mantra of HOPE – humour, optimism, perseverance and energy. His friends spoke fondly about him and reminded the congregation that he ‘was absolutely adored by the people around him’. And that included me.
The queer community in Australia is one of significant pride, power, resilience and determination. It is a community that has endured great sadness, brutality and oppression, but from the time of the march of the 78ers (the name given to those who took part in the first Sydney Gay and Lesbian Mardi Gras in June 1978) to the HIV/AIDS crisis, the cruelty of gay bashing at Kings Cross, and the fight to simply own one’s identity, one thing has always prevailed – hope.
A hope for less stigma, a hope for more rights, a hope that soon times will change for a more inclusive future. A hope that things could be different for those who would walk in the footsteps of the members of this community who have borne the brunt of the inequity, violence, discrimination, exclusion and separatism.
I believe in hope, and I also believe in the power of people to bring about change, to fight for what is right, to stand up and be counted, to have their voice heard and to speak for others who may not be able to speak for themselves. I also believe in empathy and kindness matched with fierce determination and a will to make right what is so clearly wrong.
Museums can shape public opinion and help change the public’s attitude towards certain issues. Importantly, most Australians regard museums as trusted cultural organisations. According to recent US research, Americans find museums more trustworthy than newspapers, nongovernmental agencies and government agencies. Qtopia is a welcome and long overdue addition to Australia’s cultural attractions. As a cultural institution, it will encourage cultural change; it has the ability to not only change perspectives, but to change lives. It will help foster acceptance and change the community’s view of queer people and transform the next generation of leaders into better informed and empowered individuals.
And what about HIV/AIDS? Will we ever live in an AIDS-free world? As I mentioned earlier, there is no cure for HIV infection, but with access to effective HIV prevention, diagnosis, treatment and care, including for opportunistic infections, HIV has become a manageable chronic condition. WHO, the Global Fund (to Fight AIDS, Tuberculosis and Malaria) and UNAIDS all have HIV strategies that are aligned with the UN’s Sustainable Development Goal target 3.3: to end the HIV epidemic by 2030.
That is an ambitious but commendable target. How do they hope to achieve it? By partnering with health care NGOs and public clinics to raise awareness; increasing access to targeted health services; making investments in health a priority; and facilitating and investing in affordable health care for low-income populations.
I wish them well, but I have never forgotten something the then US Surgeon General Dr C Everett Koop said to me in 1987. I had a one-to-one meeting with him when I was chair of NACAIDS. He told me that we might never find a cure for AIDS; it might be a virus that the world will have to learn to live with. He predicted that ultimately it would become a virus that affected people in the Third World, and people who lived in poverty. That was thirty-eight years ago. While HIV/AIDS affects people of all backgrounds, including those in developed countries, as Koop predicted it is disproportionately concentrated in developing countries and among impoverished communities.
Chapter Eight Australia: Opportunities and Challenges
There were three media identities as finalists in the 2013 Australian of the Year Awards: me, representing New South Wales; the late advertising guru Harold Mitchell, representing Victoria; and Kerry Stokes, chairman of Seven West Media, representing Western Australia. We were gathered in Canberra in the grounds outside Parliament House with the other state and territory finalists. A couple of minutes before Prime Minister Julia Gillard announced that I had been selected, Kerry whispered ‘Congratulations’ in my ear. No doubt someone from Seven West had tipped him off. It didn’t spoil my excitement when Julia Gillard read out my name, and I still felt somewhat overwhelmed.
It was such a great and unexpected honour. So many of the happenings in my life have been unexpected.
Becoming Australian of the Year is not the kind of thing you ever expect to happen to you. It is humbling, and I was conscious of following in the footsteps of many distinguished Australians. I didn’t want to let them or Australia down. It was explained to me that the holder of the title could do as much or as little as they wanted – it was up to each individual Australian of the Year. At the time I was national president of Alzheimer’s Australia and patron of the Macular Disease Foundation. (Alzheimer’s Australia was renamed Dementia Australia in 2017, to represent all dementias, of which there are more than 100.)
I decided to use my year to talk about positive ageing, to raise awareness of dementia, and the need to find a way of slowing it down and, ultimately, a cure through better investment in medical research.
Why am I so committed? Because of Dad, who, as I mentioned in Chapter 5, had vascular dementia, macular degeneration and severe hearing loss – what you might call a lousy health trifecta. For some reason, my mother, who had strong prescriptions in her bifocal glasses, always feared she would lose her sight. She used to tell me that if she went blind I had to kill her. I don’t think she meant that, and fortunately I was never put to the test. Mum never lost her vision. Dad did. My parents got divorced when I was sixteen, so Mum never witnessed Dad’s struggle to cope without his central vision. I doubt my father ever thought he would lose his ability to read, watch TV or recognise people’s faces. Age-related macular degeneration (AMD) is the leading cause of irreversible vision loss and blindness in Australia. It had a shattering impact on his life. There was no Macular Disease Foundation to help Dad. It didn’t open its doors until 2001. I used to go to the Royal Blind Society to find aids that would help him.
AMD is highly hereditary. If one of your parents has it, you have a 50 per cent risk of getting it too. My brothers and I promptly had our macula checked, and I still do so on an annual basis. The macula is in the centre of the retina, at the back of your eye. It is responsible for our detailed central vision, used in reading, driving and recognising faces. It is also responsible for most of our colour vision. AMD damages a person’s macula and central vision.
Since I became patron of the Macular Disease Foundation in 2005, so much has changed. There has not only been the breakthrough in drug treatments, but awareness of AMD has grown significantly. Community awareness of AMD has increased from one in three people to two in three people (aged over fifty) being aware of AMD. There are two forms of macular degeneration, wet and dry. There is no cure for AMD, but there is effective, sight-saving treatment for wet (neovascular) AMD, which is the most aggressive form of the disease. This requires regular injections to the eye. In January 2025, the Therapeutic Goods Administration approved a new eye injection treatment to slow the progression of dry AMD, also known as geographic atrophy. This is a welcome breakthrough, giving people with dry AMD a treatment option they’ve never had before. Australia is one of the world leaders in the treatment of macular disease.
Research carries the key to Australia’s fight for sight and the foundation has invested more than $5.9 million into unlocking new knowledge and innovations, making it Australia’s largest non-government source of funding for macular and retinal disease research. Macular degeneration affects one in seven Australians over the age of fifty and the foundation estimates 2.1 million Australians will be impacted by macular disease by 2030. Our aim is to double the number of research projects we fund by then. It is an expensive goal and the foundation will have to raise more than $3 million. But having seen what vision impairment did to Dad, I know what a worthy goal it is.
To put it mildly, 2013 was a busy year for me. As well as my official Australian of the Year commitments I was hosting Studio 10 at Channel 10, along with Sarah Harris, Jessica Rowe and Joe Hildebrand, and using every opportunity to talk about AMD and dementia. There is a link between the two conditions. People with dementia have a higher chance of developing AMD, particularly late or advanced AMD, and people with AMD have a higher chance of developing dementia.
Having a platform to talk about issues that were close to my heart – and still are – and that affect many people in our community was a tremendous opportunity to spread the word and meant that I was able to immerse myself in those issues for an entire year at many events at different occasions around Australia. Tony Abbott was then federal Opposition leader. He asked to see me. His chief-of-staff Peta Credlin was also present at his office in Sydney. He wanted the facts and figures on dementia. I’d had dealings with Tony before, when he was Minister for Health and Ageing (2003–07) in the Howard government. He was supportive of the initiatives of the Macular Disease Foundation. I knew he was genuinely interested in health.
I gave him the information he was seeking and stressed the urgent need for a greater medical investment into dementia research, stressing that we needed to find a way to slow the progress of dementia and ultimately find a cure. I raised our concerns about some people with dementia being exposed to physical and mental abuse and subjected to the use of physical and chemical restraints, often without consent. It was a fruitful discussion. Tony said he might be able to find $60 million for medical research. I told him it wasn’t enough. Dementia research needed $200 million over five years.
As Australian of the Year I travelled around our country and, whenever and wherever I spoke, talked about Australians’ health, AMD and particularly dementia and its prevalence, plus the vital need for significant medical research funding. There was a federal election in Australia in September of that year, and in his campaign launch speech Tony Abbott promised a Coalition government would give $200 million to dementia research over five years to Australian scientists and medical researchers working on ways to prevent or cure dementia.
‘An incoming Coalition government will commit an additional $200 million to dementia research to help the 300,000 Australians who have it today and to help the 900,000 at risk of having it in thirty years’ time as our population gets older,’ he said. ‘The best people to find treatments and cures for this insidious disease are our world-beating medical researchers.’
Glenn Rees, the then CEO of Alzheimer’s Australia, and I couldn’t believe our ears at first. I rang Glenn: ‘Did you hear what Tony Abbott just said?’ Of course he had. Glenn was as excited as I was. It had been a long campaign for us, starting back in 2011 with a march on Parliament House, Canberra (my first-ever protest march; I enjoyed it immensely) to launch our Fight Dementia campaign. At the time, Australia’s health policy considered dementia a normal part of ageing (it is not). Too many Australians, including politicians, think like that, but dementia is actually a chronic condition that affects brain function, including the loss of cognitive functioning (such as thinking, remembering, learning and reasoning) and abilities to the extent that it interferes with a person’s activities and overall quality of life.
Our Fight Dementia campaign called for a revolution to effect change not just to Australia’s health policy, but also to the pervasive negative social attitudes that endure towards people living with dementia, which lead to negative stereotypes, loss of rights, stigma and social isolation.
Not long after winning government, Prime Minister Abbott announced budget cuts. I was worried that the money for dementia research would be reduced or even cancelled. I rang Peter Dutton, later federal Opposition Leader, but then Health Minister, to check that the money was safe. He reassured me it was. ‘It was an election promise,’ Dutton said. ‘The money is safe.’
In 2025, dementia has become an urgent public health issue and is the chronic disease of the 21st century. Dementia Australia estimates that in 2025 more than 433,300 Australians are living with dementia. Without a medical breakthrough, that number is expected to increase to more than 800,000 by 2054.
As Australian of the Year, it was a privilege to be part of informing discussion and raising awareness about dementia. I think that’s what I enjoyed most, apart from meeting so many Australians: the opportunity, within the objectives that I set myself, to try and communicate information about ageing, vision loss and dementia.
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I wear my heart on my sleeve as far as Australia is concerned. I am a proud Australian and always have been, and was truly honoured to become Australian of the Year. It is one of the greatest honours your country can pay you.
When I was a small child I lived with my parents and two of my brothers in the United States (the third one wasn’t born until after we had returned to Australia). After World War II, my father, who had been a war correspondent in Java for The Sydney Morning Herald, joined the Australian government’s News and Information Bureau in California. During World War II, Java was part of the Dutch East Indies. It is one of Indonesia’s largest islands and now home to its capital city, Jakarta. We were in America for five years. By the time we left to return to Australia, Dad was working in New York for Australian media proprietor Ezra Norton, who owned Truth & Sportsman Ltd, and had also received an offer of a good job in the UK on the Manchester Guardian, the forerunner of today’s Guardian. He and my mother decided to come home as they wanted us kids to grow up in Australia.
Fast forward twenty years to when I was living in London with my husband and our first child Kate, who was born there. We loved our life in England. There were plenty of career opportunities for both of us, but we decided to come home because we wanted our daughter to grow up in Australia. We thought the opportunities available here – the lifestyle, the weather, the plentiful fruit and vegetables, plus meat that, unlike in London, we could afford to buy – offered us and our daughter a better life. We returned home at the beginning of the 1970s, a decade of sweeping change. It was an incredible era; exciting, full of promise. We all worked hard, but unlike in today’s time-strapped 24/7 world, we had time to play, to enjoy life and friendships.
Women’s liberation was in full swing. Gough Whitlam became Prime Minister one month after the launch of Cleo, the magazine for ‘the progressive woman’ that I created for Australian Consolidated Press, then run by Sir Frank Packer and later his son Kerry. Putting politics aside, I have always thought that Gough Whitlam’s greatest achievement was to make Australians feel proud to be Australian. He stirred a sense of patriotism that I suspect was always in us without us realising. Gough told us it was no longer necessary for young Australians to go overseas to make their name. We could do that here in Australia, he said. I believed him, and as my life has turned out, Gough Whitlam was right. But it was a big shift in thinking and put an end to the cultural cringe that existed in the Australia of those times.
What exactly is so special about being Australian? For some it is our community spirit and mateship, our rich blend of cultures, our natural friendliness, our magnificent and diverse landscape, our climate, our ability to produce champion sportspeople, our flora and fauna. Many people from other countries have contributed to our development, have prospered through the opportunities Australia has given them and successfully embraced the Australian way of life.
I think the freedom that Australia offers is precious, but too many people take it for granted. Just think about it: we enjoy freedom of expression, which gives us the right to express ourselves orally, in writing or through the media; we have freedom of worship and can practice our own religion or decide not to practice any religion. We enjoy freedom of association with others; we have the freedom to vote in elections and, if we choose, to be elected, and we have the freedom to assemble, which protects the rights of individuals and groups to meet and to engage in peaceful protest.
We have the freedom to make our own choices, to speak out, to have a point of view about anything and everything, to disagree, to be an individual; to travel wherever we want in our own land; to aim for the top, to dream dreams and work hard to make them come true; even to make mistakes, learn from them and still have the opportunity to have another go. Freedom is the incredible gift that Australia gives all its citizens, and it is something we can’t put a price on.
Of course, things do go wrong and life can be difficult at times, but as I learned early in my career, tough times don’t last, tough people do. We can lose our job, experience loss of income, the closing of our business, illness, suffer the effects of drought and bushfires, but we never lose our freedom. Even when our lives are at their lowest ebb, we still have freedom of speech and movement. It is the freedom to express these views that makes Australia a great country, among the few in the world where there is a genuine freedom of expression. We should never forget that. Queensland and Western Australia have occasionally muttered about seceding from the rest of Australia, but if that were to happen – and I think it is highly unlikely – I doubt that any prime minister of Australia would send in tanks and bring in troops to stop any of us crossing state borders.
Australia has many other pluses that are important to the way we live. We have a vast and beautiful country. Geographically, Australia is extraordinary, with its dry arid areas, its lush plains, its snowfields and magnificent coastline. We have immigrants from more than 170 countries now calling Australia home and bringing to our island continent their cultures, knowledge and skills, all of which have been to Australia’s gain, and most Australians agree that well-managed migration is beneficial to the nation.
