Some of ACON's former presidents and CEOs reflect on their time as leaders of ACON.

• Lex Watson
• Bill Whittaker
• Levinia Crooks
• Rolf Petherbridge
• Bruce Meagher
• David Stone
• Stevie Clayton

Lex Watson

ACON President 1985 - 1986

The formation of ACON in early 1985 was an important step in Australia's response to HIV/AIDS which had begun in early 1982. In those first three years much of the blueprint was laid down. The NH&MRC and the Blood Banks had reacted, the team at St Vincent's Hospital and the State Government had set up processes, and the gay community had set up the AIDS Action Committee and GCS (as it then was) took up the task that was to become Ankali.

The Prospective Study was launched with the help of the AAC, the first safe sex campaigns and leaflets were released, one by the State Government, one by the gay community, the first public information meeting was organised by the AAC at the Paddington Town Hall. Other community based organisations were established - the Bobby Goldsmith Foundation, the Community Support Network, People with HIV/AIDS. Liaison was established with Health Departments, State and Federal, relevant doctors and so on.

All of these initiatives drew on the skills, organisations and networks that had grown up over the preceding twelve years of gay and lesbian activism in Sydney and Australia. The epidemic also furthered the links between the political activists and the gay sub-culture or cultures. There had been something of a history of hostility there, but HIV did not recognise such boundaries.

The early challenge was simultaneously to get people to take HIV seriously, to respond to the safe sex messages, while calming the hysteria surrounding the epidemic. It was also to get accepted what some called ‘the new public health', the peer group based model as opposed to the old model of quarantine and messages handed down from on high.

In this context, the so-called ‘Queensland babies' story broke in the middle of the late 1984 federal election campaign. Neal Blewitt, Health Minister, acted rapidly to extend and formalise the government's response. This included establishing the medical AIDS Task Force and the community and education oriented NACAIDS, the National Committee on AIDS on which the AAC and its Victorian counterpart had representation. Further, the federal government, in recognition of the roles they had and would need to play, decided to fund gay community based organisations.

Initially funding was limited and the government decided it would deal with only one body in each State and Territory, not several competing ones. Within the gay community it had also become clear that greater communication and liaison was needed among ourselves. Thus it was that a meeting of the various groups was held in early 1985 and the decision taken to form ACON, with the affiliate structure that suited our needs.

Fortuitously, also in 1985, the NSW Government enacted the Associations Incorporation Act, which came into operation on 1 July 1985. This provided an appropriate legal structure for non-profit community organisations that had legal obligations such as leases, employees and the like. ACON was, it is believed, the first organisation in NSW to apply for such status.

Since those days, ACON has grown considerably and its emphasis has shifted more into service provision while education remains a high priority. The political advocacy role of earlier years, toward governments and the general community, is no longer as central, as necessary, as it initially was.

The extent to which Australia has been successful in containing the incidence of HIV/AIDS is perhaps the greatest achievement of the AAC and ACON, of the other community organisations, and of the politicians, doctors and bureaucrats who embraced the ‘new public health model.'

It is also to be recognised that gay and no doubt lesbian politics in Sydney in the 1970s was a rather fractious beast, fraught with personal rivalries and dislikes and presumed ideological differences. These informed and to an extent affected especially the early years of the AAC and ACON. It is to the credit of many that we were able to grow out of much of that and become as professional as we are today.

For the record, I was also Co-convenor of the AAC, one of the two founding gay members of NACAIDS and the founding President of ACON and member of the Committee of ACON and convenor of its legal working group for some years.

Bill Whittaker

ACON CEO 1986 - 1990

1) What impact did ACON have on the lives of GLBT people and people affected by HIV/AIDS during your time as president/CEO?

ACON was formed 1985 by gay men and their friends at the height of public concern and hysteria about AIDS. Prevention programs were sporadic, treatment and care services were struggling to cope. Few governments were taking the epidemic seriously and there was very little funding. Human rights of gay men and people living with the virus were under attack. So gay men were under threat from many directions and there were understandable fears that the gay community would be wiped out by this deadly disease that people knew little about. Gay men and others affected by AIDS needed a rallying point - they needed an organisation that would fight for their rights and for their lives. ACON was formed for that purpose and has been highly successful over the past 25 years.

2) What were the greatest challenges that ACON had to face during your time as president/CEO?

I became the first ACON CEO in 1986 (following my two years as SGLMG President) and served with ACON until 1990, when I resigned to become President of AFAO. At the time I joined ACON, it was racked by internal conflict, with tensions and hostilities among the board and other community based organisations. Everyone was united in wanting to fight HIV, but there were strong disagreements about how best to do this and who should do what. The gay and lesbian response needed to be united and energy channelled to the fight against AIDS, not at each other.

3) What were ACON's greatest achievements during your time as president/CEO?

• A more cohesive state and national response to HIV.
• Demanding and getting a place at the decision making table with government - both State and Federally.
• Building a strong advocacy and policy base at ACON.
• Establishing national Treatment Information and Legal Projects which benefited the whole country.
• Getting money and staff - we had three staff when I became the first CEO and over 70 when I left plus three branches.
• Helping to set up and get funding for PLWHA (NSW) (now Positive Life) and SWOP (Sex Workers Outreach Project which I hoped would become independent).

4) What was it like working at ACON during your time as president/CEO?

Frightening, exhausting, energizing, challenging, rewarding and an absolute privilege to lead a brilliant and extraordinarily gutsy staff team. I had great support from Board members like Don Baxter, David Buchanan and Lex Watson.

5) What is your favourite 'ACON moment'?

Three really - being driven to the ACON XMAS party on the back of a Harley motorcycle dressed in drag - and doing a magnificent drag performance with several of my staff, being ordained a pope of the Sisters of Perpetual Indulgence during my farewell party from ACON and working with ACTUP in many covert operations!

Levinia Crooks

ACON President 1988 - 1989, 1991 - 1992

1) What impact did ACON have on the lives of GLBT people and people affected by HIV/AIDS during your time as president/CEO?

When I was president there was very little engagement with women as service users (there are a very small number of positive women outside that observation but only one positive lesbian to my knowledge). In respect of gay men, HIV and ACON have a huge impact during my time. To some extent being in ACON meant identification with HIV. This was difficult. For the community ACON, and HIV supplanted much of the work that had been happening to progress GLBT issues. This meant that Madi Gras became focused on HIV. Mostly this also happened in Victoria where the idea of saving (by ALSO) for a gay retirement village got diverted to VAC and the idea of a gay credit card got shelved as well. In Sydney, gay rights activists and activities took up HIV and this became the priority for a number of years.

2) What were the greatest challenges that ACON had to face during your time as president/CEO?

Death, and for a while a feeling there was going to be no positive outcome, just remedying one opportunistic infection so something more horrible could come along and if you survived the physical then dementia, PML or psychosis. Waste and a progression of people from being active contributive members of the communities to wasted and diminished people, and the difficulties of partners, peers and communities in dealing with this.

3) What were ACON's greatest achievements during your presidency?

Making the shift from "in the absence of there being any treatment or cure for HIV, then everyone should assume they are positive and practice safe sex" through to "there are emerging treatments for OIs and HIV and as such we are now changing our position to one where people should test for HIV, monitor their health and make use of emerging treatments".

4) What was it like working at ACON during your time as president/CEO?

Compelling, desperate, very rewarding, sometimes very hard and challenging, time consuming to the point of total absorption, occasionally overwhelming. It was also a time where I learned a huge amount and was encouraged to pursue my engagement in HIV.

5) What is your favourite 'ACON moment'?

There are many. Standing at Taylor Square on the night of the first candle light vigil down Oxford Street and having a very large cop come up to me and say "I think you any your lot need to move out of here now." I turned to him and was about to bite and he said "because that's a big fucking cloud and you don't want to get rained on." It may not sound much, but the juxtaposition was great. Also waiting downstairs at the Shift to hear the outcome of the vote when I was first elected to the Board (1987) and just being so excited when I was.

Rolf Petherbridge

ACON President 1990 - 1991

1) What impact did ACON have on the lives of GLBT people and people affected by HIV/AIDS during your time as president/CEO?

My presidency was close to the peak impact of the epidemic. As an organisation ACON was overtly working to mitigate the various distresses and towards an avoidance of them i.e. a cure. Somewhat less overtly it was working to protect a libertarian gay lifestyle against an ominous right-wing backlash. The strategies empolyed were many and successes considerable.

2) What were the greatest challenges that ACON had to face during your time as president/CEO?

I feel unable to properly answer this question as I don't properly remember which challenges occurred when in a long period of intense engagement. One thing I remember the organisation was worried about and which I am pretty sure did coincide with my presidency was a change of state government from Labor to Liberal and we were I think all worried that that might result in a withdrawal of support or funding or influence. These fears were largely unfounded.

3) What were ACON's greatest achievements during your time as president/CEO?

In my estimation, the greatest achievement which occurred (or at least began) during my presidency, and for which I was considerably responsible, was the comprehensive overhaul of the Australian drug regulatory system.

4) What was it like working at ACON during your time as president/CEO?

Intense, stimulating and exhausting. But what is probably difficult for those who weren't there to understand is how much like being at war it was. Dealing with death and decline was an almost daily challenge. For many, the normal emotions were an indulgence one could not allow oneself. One just had to push on. To illustrate the extremity I give two personal examples:- 1. I went to Washington for an FDA workshop and was away two weeks. While I was away four close friends died. 2. I represented HIV+ve's on CTTAC for seven years. In this forum I was up against an array of medical professors. At a few meetings I had said that I reckoned I must have lost a hundred friends and colleagues to the virus. After one meeting I became concerned that I might have been exaggerating so that night I sat down and made a list. There were 180 on it and that wasn't near the end. I didn't keep a running tally thereafter but the total would be well past 200. If we aren't each suffering Post-traumatic Stress Syndrome we are each entitled to. In this regard I might suggest that somewhere in this exercise you might compile and publish an "ACON Honour Board" of our fallen soldiers.

5) What is your favourite 'ACON moment'?

To give an answer which is the most personal rather than cooperative: Ddc was the second drug to demonstrate efficacy and trials were showing the benefits of combination therapy. Many who had enjoyed some benefit from AZT had exhausted its benefit. We had initially been told by Roche, Ddc's developer, that we (Australia) would be getting access to the drug at the same time and under the same conditions as the US. Through a personal contact I won't reveal, I learned very reliably that Roche top management in Switzerland had decided there would be no early access offered in Australia. I was able to get the fax number of the head of Roche Clinical Research and that night sent the most outrageously threatening fax demanding compassionate access. In less than 12 hours I had a reply promising drug access within the week.

Bruce Meagher

ACON President 1994 - 96

1) What impact did ACON have on the lives of GLBT people and people affected by HIV/AIDS during your time as president/CEO?

My term 1994-96 was a time of great change and challenge for the community. It was at the pivot point when combination therapies were producing positive results in trials but were not yet widely available. Getting access to these drugs at affordable prices and educating people living with HIV/AIDS in their effective use was a significant challenge but clearly one that was ultimately successful. Secondly, the term saw a change in government at the State and Federal level. ACON was instrumental in maintaining a broadly bipartisan approach to HIV/AIDS funding and support. Two doctors, Refshauge and Wooldridge, were as good health ministers as we could have hoped for. Andrew Refshauge took some important steps in funding access to drugs and Michael Wooldridge delivered a third national strategy that, while not perfect from ACON's point of view, allowed the effective response to the epidemic to continue.

2) What were the greatest challenges that ACON had to face during your time as president/CEO?

Our greatest challenge by far was pushing to make combination therapies available as soon as possible while at the same time managing community expectations about the processes that would inevitably be involved in making that happen. The most awful experience I had as President was my very first public meeting. The room was full of people living with HIV/AIDS who were desperate to get access to drugs that could save their lives but who could not because they had not gone through all the approval processes. I could promise that we would lobby and argue for fast access and a massive expansion of trials - but ultimately I could not give them the reassurance they so desperately needed and deserved. Many of the people in that room would survive because of the new drug regime - sadly for too many it would become available too late. The emergence of the euthanasia debate was highly controversial and one that threatened to undermine support for ACON in the broader community. It had to be managed with great care.

3) What were ACON's greatest achievements during your time as president/CEO?

I think the work that was done dealing with the combination therapies issues and the move the third national strategy was critical. We also moved to the current ACON building in Commonwealth Street which made a huge difference to the organisation. Underpinning all of this was the fact that we managed to maintain focus on a range of issues related to the epidemic and other matters (education, discrimination, community support etc) despite the fact that after 10 years there was a sense of near exhaustion given that the HIV/AIDS affected community had been living a crisis for all of that time. The build up of grief and loss was palpable and the fact that ACON and the community stayed positive and motivated was truly remarkable.

4) What was it like working at ACON during your time as president/CEO?

My overwhelming recollection was of the dedication and commitment of the staff and volunteers of the organisation. People gave above and beyond what could reasonably be required of them. I also remember the passion - sometimes too much passion from certain directions but even that, with the benefit of hindsight, was truly admirable.

5) What is your favourite 'ACON moment'?

My weirdest experience was negotiating the sex on premises code of conduct with venue owners and managers. I held several lengthy and detailed meetings about how and where condoms and lube should be available, what level of lighting there should be etc never having been to any of their venues. I understood the theory, but had no practical knowledge. I think we came to a very beneficial outcome despite my ignorance!

David Stone

ACON President 1998 - 2000

1) What impact did ACON have on the lives of GLBT people and people affected by HIV/AIDS during your time as president/CEO?

Throughout its history, ACON has striven to improve the lives of the LGBT community and those living with and affected by HIV/AIDS. I was privileged to be president of ACON around the turn of the millennium - a time of significant shifts in how our communities were responding to the epidemic, and a time of great change for ACON as it developed a greater role in the wider health issues of the LGBT community.

2) What were the greatest challenges that ACON had to face during your time as president/CEO?

Change is a great challenge to any organisation - responding to the changes in the shape of the epidemic and changes in its communities was ACON's greatest challenge, in my view, at the time. Improved therapies meant significant improvements in the health and wellbeing of many living with HIV, but also brought new challenges around engaging our communities in education campaigns, and different support needs for some in our communities.

3) What were ACON's greatest achievements during your time as president/CEO?

Looking back after nearly 10 years living in London, for me, it was the people of ACON who I felt were its greatest achievement - volunteers, clients, staff, board members - an amazing community of groups and individuals who have, in many senses, led the world in terms of a community response to the epidemic.

4) What was it like working at ACON during your time as president/CEO?

Exciting, challenging, engaging, maddening, fun, exhausting - but always packed with delight. I learnt so much from my time on the ACON board - including some skills that have been really useful since.

5) What is your favourite 'ACON moment'?

MAG meetings; getting around NSW to visit all the ACON offices; giving evidence before the NSW upper house; being interviewed in bed in pyjamas for Fair Day; dragging up for a fund-raiser; selling ribbons for World AIDS Day - too many favourites to pick just one! But if I had to, I always enjoyed volunteering at Hand in Hand - literally hundreds of people came together to help put on a fantastic night each year to raise valuable funds for ACON's work - particularly for work for which ACON didn't have to account to Government. My mum and dad helped on bag search at the gate in the early hours of a Sunday morning - that said so much about what ACON was about.

Stevie Clayton

ACON CEO 2001 - 2009

1) What has been the impact of HIV on lesbians in NSW?

Of course someone doesn't become infected with HIV because of their sexual identity, they become infected with HIV because of sharing infected body fluids either through sex, drug injection, or in the very early days before the blood supply was made safe, through blood products. Whilst most sex between lesbians is per se low risk for HIV transmission, some lesbians do have sex with men, including gay men, do inject drugs and may have other practices that put them at risk of HIV. Indeed there are and have always been some lesbians in NSW with HIV. The numbers are so low, however, that it has always been difficult for them to get the support programs that they need and that are so readily available for men. Secondly, we have very much a 'coalition' community in NSW so most lesbians have gay men they are close to and may even regard as part of their 'chosen family'. As HIV has impacted on those men so it has impacted on the lesbians in their 'families'.

2) How have lesbians contributed to the response to HIV/AIDS in NSW, particularly in the late 80s and early 90s?

Throughout the 80s and 90s lesbians were looking after gay men who were their friends and family as they got sick and died, advocating alongside gay men for improved services, better access to treatments and improved rights, working in HIV organisations, providing care as doctors and nurses, and being volunteer carers alongside the many heterosexuals who also wanted to help.

3) What impact has HIV had on the identity of the GLBT community? Has it brought the gay and lesbian communities closer together?

We have a fledgling rights movement when the HIV epidemic hit. In some ways it distracted people from the fight for increased rights, took the energy and resources away to what was a more urgent struggle and decimated the newly emerging community as one by one the strong voices died from AIDS. But at the same time, it brought different parts of the community together against a common foe. It mobilised people to united community action and created a powerful voice for our community with government which then helped to achieve legislative reform.

4) What are some of the stories involving lesbians and HIV that you find particularly memorable?

People think of ACON as a gay men's organisation because for most of its life most of the services were targeted to gay men but in fact for a really long time, almost half of the staff have been women and many of them lesbians. In fact many of the longest serving staff are lesbians. I think if you got personnel to do a quick rough count of lesbians in the organisation and how long each has worked there you would easily get a total of over a hundred years of service.

5) What do you think is the legacy of lesbians in relation to HIV/AIDS in NSW?

Lesbians have been there alongside gay men and others in every aspect of the epidemic.

6) How have lesbian health services developed at ACON over the last 25 years?

In the late 90s the Policy & Women's Unit at ACON contained projects focused on women living with HIV, women partners of bisexual men, HIV prevention with women generally. The obvious focus was on areas of risk for HIV and this was a very small part of the organisation because over services were seen as having the main responsibility for working with women and ACON was funded mainly to work with gay men. At the same time, it was obvious that there were few services for women and this was an area that ACON could not overlook. So initially ACON's work for lesbians was very small and only in the only in the context of HIV prevent for women and care and support services for lesbian with HIV. The second step was the development of the Aboriginal and Torres Strait Islander Unit which had a focus on HIV health promotion and support programs, in a very broad context, targeting people with HIV, gay men, lesbians and sistergirls in Indigenous communities. Then in 1999-2000 the ACON Board began a lengthy and far reaching consultation process to develop a new strategic direction for the organisation. They recognised that the advent of HAART in 1996 had brought about a profound change in the course of the epidemic in Australia and particularly in the way that many gay men prioritised HIV in their lives and with great foresight they realised that ACON would need to change too. The result of that consultation process was an acceptance that good HIV services, whether prevention or care & support must be provided within the context of people's whole lives. That means delivering broad population-based programs that look to total physical, mental, social and emotional health and well being, not just the treatment of disease and in the case of ACON the Board was clear that the population to serve was a GLBT community. So ACON then began slowly but surely broadening its programs to GLBT, where appropriate and where new funding was available.

7) What have been some of ACON's key achievements in terms lesbian health over the last 25 years?

The lesbian health project itself has remained relatively small, although ACON has always managed to have some presence for it in rural and regional areas which is incredibly important. The project has developed some ground breaking resources such as Opening the Window - A Guide to Lesbian Health which is requested from all over the world and an important resource on HIV prevention for lesbians into BDSM. The project has also been an important catalyst in encouraging research into lesbian health in conjunction with ALMA, encouraging lesbians to take greater care of their own health and working with the Cancer Council to provide support groups. It is also important to understand that almost all new projects at ACON, unless they are HIV specific, are now GLBT projects which means that lesbians are included in those broader programs and services from the Anti-violence project, though drug & alcohol programs to the new work in ageing.

8) What were some of the challenges involved with developing lesbian health services at ACON?

Funding for lesbian health work has been very difficult to get as (1) there are no policy and funding structures in Federal or NSW State Government that recognise GLBT health in general or lesbian health in particular; (2) even when you could get them to listen, they would say "Where is the data?", but they wouldn't fund the research or mandate sexuality questions so we could get the data; (3) we would often be told that the needs of lesbians are no different than other women and they should be subsumed into women's health; (4) women's health programs were so under-funded it was impossible to get anything out of them. Most men were incredibly supportive of building lesbian health and GLBT health programs at ACON but I have to say that one of the greatest challenges and most disappointing things has been the handful of men who at every turn were critical of this change and made constant unfound accusations about taking HIV money to fund lesbian health programs. For some reason they just couldn't bear the thought of lesbians having something for themselves and so they had to make up lies and attack women working at ACON. They are quite sad really.

9) What impact has ACON had on lesbian health in NSW specifically and in Australia and internationally generally?

When ACON began working on lesbian health there were only a few isolated researchers and project officers around the country, and of course the long history of women's health centres providing services to lesbians but no real profile of the issue and certainly not with government. There is now a major research centre in the form of Gay & Lesbian Health Victoria, researchers working at various centres around the country, Ministerial Advisory Committees on GLBTI Health in some states and various projects springing up. ACON's lesbian health project was a forerunner of many of these and is now in contact with all of them, learning from them and collaborating with them. Across the country and internationally we are seeing other organisations following in the footsteps of ACON and starting to develop GLBT health organisations and increasing they are looking to ACON to learn about the benefits and the pitfalls.

10) How do you think lesbian health services will develop over the next 25 years and what role do you think ACON will play?

I think the biggest issues for lesbian health will be: (1) getting lesbians to understand that they have health needs and caring enough to deal with them in the necessary timeframe, which means regular pap smears and breast checks but also quitting smoking, drinking less alcohol, exercising more, and de-stressing; (2) getting doctors to understand that they have lesbian patients who have health needs and meeting them in a welcoming and appropriate way; (3) building programs so that we can age and then ultimately support each other to die without having to lose who we are on the way. I hope that ACON will help me with all of that.