Unapologetically Ita, page 14
Somewhere deep inside himself David Polson, whose friends called him ‘Polly,’ found the resilience to fight the elusive HIV virus, for which there is still no cure.
‘So many people and friends were dropping dead,’ he told me. ‘I didn’t want to die and told myself the disease would not kill me.’ A friend made an appointment for him to see David Cooper. The two men bonded and it marked the beginning of a special doctor–patient relationship. ‘David Cooper was an exceptional human being, so kind and understanding,’ says Polson.
Polson told Cooper he was prepared to try any drug that could help him beat the virus and volunteered to take part in as many clinical trials as Cooper suggested. Some of the side effects were ‘ghastly’. He experienced crippling migraine headaches; sometimes he couldn’t eat because his tongue and lips were so swollen; at other times he just felt so sick he asked Cooper to stop a drug treatment. Polson undertook twenty-eight HIV drug trials, each of which gave rise to considerable side effects. He was frequently in and out of hospital.
Polson’s contribution to helping medical science find a treatment or cure for HIV has been immense and his extraordinary willpower in persisting with the drug trials incredible. He said he was motivated half by the hope that he would benefit from new drugs, and half by the hope that his participation would help the community and medical science, even if it didn’t help him.
‘David Cooper was determined that I was going to survive, and I have. He saved my life,’ Polson said.
In November 2024, Polson celebrated his 70th birthday. It was a memorable celebration. However, the drug trials have had a lifelong impact. As David Cooper explained, ‘In Polly’s case, his HIV treatments have caused heart disease and a very rare brain disease which will increasingly disable him.’ Polson takes forty-three pills a day – eleven are HIV drugs, and the rest are for different side effects of HIV treatments.
David Cooper died from a rare blood disease in 2018. His death resulted in Polson deciding to become an HIV advocate and educator. By educating others and sharing his personal story of resilience, hope and courage, he hopes to dispel myths surrounding HIV/AIDS, promote a healthy and positive life while living with HIV, and replace people’s fear and ignorance with understanding and acceptance.
My involvement with David Cooper was always connected to HIV/AIDS education. When NACAIDS was under siege from the media, homophobic politicians or fearful members of the public about how a person could contract or avoid AIDS, and we needed a medical voice of calm and reason to talk to the media, he was always willing to help and to engage in public debate. But David Cooper never sought the spotlight. Quiet and unassuming, he preferred to keep his head down and look after his patients and their welfare, and not surprisingly he won their love, affection and trust. David Polson is testament to that.
Cooper believed that access to health care was a fundamental human right and used to say that he could not easily imagine how anyone could be effective in his field of medicine without collaborating and working with people. Collaboration came very naturally to him. It was why people like me, who wanted to get important information to the public in a form they would understand, sought him out.
He was a wonderful man who touched the lives of many people. The fact that we had clinicians like David Cooper (and Professor Ron Penny) in leadership roles – people who were committed to this collaborative approach – was at the heart of the success of Australia’s response to HIV/AIDS.
Australia’s record in the education and treatment of HIV/AIDS is something to be proud of and our prompt and efficient response to the epidemic in the early days of the virus won praise from the World Health Organization (WHO). We did not see the spread of the virus into the drug-using community which happened in so many other countries, particularly the United States. Our success was due to the partnerships that were formed between scientists and doctors like David Cooper and HIV-infected people in the community.
HIV remains a major global public health issue, having claimed an estimated 42.3 million lives to date. Transmission is ongoing globally in all countries. There were an estimated 39.9 million people living with HIV at the end of 2023, 65 per cent of whom are in the WHO’s African Region. In 2023 (the latest year for HIV figures), it was estimated that 30,010 people in Australia were living with HIV. That same year, an estimated 630,000 people died globally from HIV-related causes and an estimated 1.3 million people acquired HIV.
Of course, back in 1984 ensuring longevity wasn’t part of the plan in fighting HIV/AIDS. Old age wasn’t discussed much at all, as it was evident that the virus killed mainly men in the prime of their youth. But the advances in medical treatment and drug therapies have created a new landscape of LGBTQIA+ ageing and aged care. The nature of the HIV epidemic is now significantly different and more HIV-positive people are living longer and leading more productive and fulfilling lives than ever before.
Most older people, whatever their sexual orientation and circumstances, want to live independently at home for as long as they can and have a good and respectful death, also at home. They want to be able to do the things that they want to do and enjoy the company of their loved ones, their family and friends. If they do need care, either at home or in an aged care facility (as many people do as they age), they want person-centred care.
I like person-centred care because it is not just about giving people whatever they want or providing information. It is about considering people’s desires, values, family situations, social circumstances and lifestyles, and working together to develop appropriate solutions. Person-centred care is compassionate, considers things from the person’s point of view and is respectful, with each person being recognised as a unique individual with their own story.
Many older LGBTQIA+ community members experience frustration and anxiety when trying to navigate the aged care system. This is a common complaint of other older Australians, but in the non-LGBTQIA+ community children often come to the rescue of their frequently confused parents or older relatives. Many older LGBTQIA+ people are likely not to have children, or if they do, they might no longer have contact with them. They may be shunned by their families, or their partner might have died. The voice of older LGBTQIA+ people remains absent from government and private sector policy and decision-making, and their specific needs are still not considered in many government and private sector programs and policies.
That simply is not good enough. I have heard that in their quest for equality, LGBTQIA+ people are told that everyone is treated the same way, but this response does not recognise the lived experiences of older LGBTQIA+ people and how those experiences have impacted their lives. Many of them started negotiating their sexuality or gender identity in a period when homosexuality was a crime and frequently considered a mental illness. They have often lived their lives in both shame and secrecy, carefully negotiating relationships out of the gaze of the public eye. They have experienced discrimination in the workplace and sometimes even lost their jobs.
Many LGBTQIA+ people have struggled all their lives and in their older years they’re at their most vulnerable, and when the stigma of an HIV diagnosis is added, many withdraw into themselves, as they did when they were younger. Although HIV has gone from a devastating epidemic to a manageable chronic disease, stigma around HIV is still prevalent.
Increasing awareness among health workers and aged care workers of what stigma is, and the need to eradicate it, is critically important. Raising awareness of stigma and allowing for critical reflection on its negative consequences for patients – such as their unwillingness to disclose their HIV status and adhere to treatment regimens and the resulting reduction in the quality of care they receive – are crucial first steps in any stigma-reduction program.
Health and care workers’ fears and misconceptions about HIV transmission must also be addressed if people living with HIV are to receive the care they require as they grow older.
For instance, fear of acquiring HIV through everyday contact leads people to take unnecessary, often stigmatising actions. Programs will need to be developed to provide health and aged care workers with complete information about how HIV is and isn’t transmitted and how practising universal precautions can allay their fears. They also need to be educated about the occupational risk of HIV infection relative to other infectious diseases that are more highly transmissible and commonly found in health and aged care settings. There is a shortage of skilled aged care workers in our aged care facilities, especially for older Australians needing specialised care – people living with dementia, for instance – who sometimes experience behavioural problems, while LGBTQIA+ people living with HIV can also develop cognitive impairment. There is much work to be done if Australia is serious about providing quality aged care to all its older citizens.
Like other older Australians, many in the LGBTQIA+ community are not prepared for their older age. And there isn’t much data on the LGBTQIA+ community growing older, which is one of the challenges facing organisations trying to respond to their needs. And generally, there is a lack of relevant population data, given that government systems and national agencies – like the Australian Bureau of Statistics – do not collect data on sexuality and gender identity.
The first LGBTQIA+ retirement guide published in the UK in 2017 found that members of the LGBTQIA+ community were ill-prepared for old age. Only 20 per cent of the LGBTQIA+ community had prepared adequately for retirement, with over a third having made no provisions. Because many older LGBTQIA+ people spent their younger years in the closet, fearing persecution, they didn’t prepare for later life, financially or legally. Younger people in the community often put off retirement planning, thinking they have plenty of time.
As I noted in Chapter 6, ‘Sex and the Older Person’, the sexual needs of residents cannot be overlooked or dismissed once they are in aged care facilities. Health care professionals need to ask LGBTQIA+ residents about their sexual needs, without embarrassment – both those with HIV and those without. This question needs to be asked of people with HIV who have a cognitive disability too. Residents also have the right to select and maintain social and personal relationships with any other person, without fear, criticism or restriction. That includes sex workers. Many LGBTQIA+ people enjoy sex with sex workers. They should still be able to do so in aged care facilities.
Once they are in care, further challenges await them. All too often LGBTQIA+ people are subjected to discriminatory attitudes and verbal abuse from staff, and other aged care facility residents and visitors. Many aged care services do not have any plans to prevent this from occurring, which is why HIV-related stigma and discrimination in aged care remains a major concern. Finding aged care services that meet the needs of LGBTQIA+ people and those living with HIV is difficult. While hundreds of providers are listed as LGBTQIA+ ‘specialised’ services on myagedcare.gov.au, the lack of adequate accreditation processes raises doubts about these claims and their ability to deliver inclusive services. My gay friends say the bar of being listed as LGBTQIA+ friendly on the My Aged Care website is too low, that it relies on ‘self-assessment’, and that training for inclusivity is not consistent.
Current estimates from the Department of Health state that approximately 11 per cent of the Australian population is lesbian, gay, bisexual, transgender or intersex. This means over 10 per cent of residents and staff in any aged care facility may be LGBTQIA+. Aged care facilities are essentially small communities, with a subset of the general population living and working within their walls in almost a share house arrangement. Just as there are people outside aged care who may lack understanding, be fearful and judgemental and not accept LGBTQIA+ people, those people are also in aged care facilities as residents and staff.
It is not surprising, therefore, that many older LGBTQIA+ people fear going into aged care facilities. There is an urgent need to raise awareness of the issues facing older members of the LGBTQIA+ community. There needs to be better education and training for everyone providing, or wanting to provide, aged care services to LGBTQIA+ people. That includes government, the public service, the medical profession, allied health services and care workers in aged care.
Aged care providers need qualifications and mandatory education. They need sexual health education too. But as long as the voice of older LGBTQIA+ people remains largely absent from government and private sector policy and decision-making, as long as their specific needs are still not considered in many government and private sector programs and policies, we have a less than perfect situation. This must be rectified and special strategies need to be established to identify and engage with those more marginalised groups within the LGBTQIA+ umbrella, recognising the diversity within that community. Federal, state and local governments should be lobbied and asked to appoint a reference group or advisory panel to provide advice on policies and legislation affecting older LGBTQIA+ people. This is long overdue.
Nick Lawson, the CEO of the Bobby Goldsmith Foundation (BGF) confirms that stigma around HIV is still prevalent, and that the biggest concern among LGBTQIA+ people living with HIV is how they are going to be treated, and whether they will be respected. Founded in 1984, when a group of friends got together to give their dying mate Bobby Goldsmith the care he needed in the comfort of his home, BGF has gone on to provide that same individualised care to thousands of Australians, and while HIV treatment has come a long way, the need for support remains.
BGF is Australia’s oldest HIV charity, and I have worked with them since they began. I was appointed a life member in 2013, and in 2023 I was honoured to become patron. BGF provides practical, emotional and financial support to people living with HIV, who come from all walks of life. From diagnosis onwards, they work with their clients to limit the challenging circumstances of social isolation, economic poverty and stigma that are often so detrimental to their physical and emotional wellbeing.
David Polson sought BGF’s support in the nineties, when he had retired from work and was unwell and struggling financially. BGF paid his rent, his phone bill and electricity account for three months until he was approved for Department of Housing assistance and the disability pension. ‘I would have been lost without them,’ he says.
David Polson and I had met a few years earlier at a BGF fundraiser, Walk for AIDS, held in Sydney to raise awareness of the everyday challenges faced by people living with HIV, and to raise money for much-needed services to provide care and support. We got on well, but our friendship flourished when Qtopia, ‘a place for Memory, Education and Celebration of Queer Lives’, brought us together again. David was the founder and first chair of Qtopia, Sydney. Former High Court Judge Michael Kirby and I are co-patrons.
David Cooper was Polson’s inspiration for creating Qtopia. In 2018, Cooper’s wife, Dorrie, shared with Polson her late husband’s vision for a Sydney AIDS museum. The concept became Polson’s goal. Telling Dorrie she had given him a mission, he said, ‘I’m going to honour David and his wonderful work. I’m going to get him his AIDS museum.’
He spoke with Michael Kirby about the idea. ‘He was enthusiastic,’ Polson said, ‘and suggested that the museum should include the history of Queer people who have been oppressed, persecuted and discriminated against over the decades.’
A committee was formed. Sydney’s Lord Mayor Clover Moore was ‘receptive’, said Polson, and subsequently Sydney City Council gave seed funding of $285,000, which allowed Qtopia to officially launch in February 2023 with inaugural exhibitions at the Bandstand, in Green Park, opposite Sydney’s St Vincent’s Hospital. This coincided with Sydney WorldPride 2023, the first WorldPride to be held in the Southern Hemisphere and the largest LGBTQIA+ event ever staged in the region.
The official launch was memorable in more ways than one and included a particularly generous donation of $1 million from the Lachlan and Sarah Murdoch Foundation. Sarah Murdoch said, ‘I hope our donation will encourage many more corporates, foundations and families to invest in what will be an amazing institution. An institution that not only protects, respects, and extends the quality of future queer lives, but saves the lives of many young Australians.’
Lobbying for a permanent home for Qtopia continued and the NSW Labor government announced that the old Darlinghurst Police Station would be the permanent home for Qtopia and, in September 2023, handed over the site. As well, they committed $6.7 million towards the establishment of the museum. As it turns out, the old Darlinghurst Police Station on Sydney’s Forbes and Bourke Streets has an important place in the city’s queer history. It was once associated with the harassment and persecution of Sydney’s gay community. The museum also features exhibitions about Indigenous history, transgender history, the changing legal status of homosexuality, queer media and police brutality.
David Polson said Qtopia was centred around three principles – memory, celebration and education:
I want people to be able to go to Qtopia and see our AIDS Memorial and acknowledge and remember all the people who died from AIDS. I want them to see the reconstruction of Ward 17 South, the first HIV/AIDS ward in Australia, and recognise the wonderful contribution of the Sisters of Charity, who then ran St Vincent’s Hospital. That is such an important part of the history of queer Sydney. The nuns looked after us without judgement. They simply said, ‘We are here to look after these people, to love, and support, and care for them.’
What about celebration? ‘We have so much to celebrate. So many of our queer community have done many wonderful things in every walk of life. We need to celebrate and we will have that celebration in the museum, and show people just exactly what we have done.’
Australia’s queer community has a vibrant, culturally rich history which is constantly evolving and progressing. More people need to know about it. Qtopia will play a valuable role in educating the public about the queer community. David said education was the most important part of Qtopia. ‘It’s very much going to be a place of education, and I really want that to be my legacy for Qtopia. It is going to educate people, not just next year, and the year after, but in ten years’ time, twenty years. It’s going to be a continuing process of educating people.’
