Good evening. For those of you who do not know me, my name is Joey Tabone.
Tonight, however, I am not speaking as the current president of the AIDS Action Council of the ACT but instead trying to speak as if I was that very institution. I want to share some snippets of the Council’s history and provide a sense of how the Council has developed over the years.
What is the AIDS Action Council of the ACT?
The Council currently resides at Westlund House which we moved to in 1995, after being evicted from Lonsdale street on World AIDS Day 1994. Soon we are to move again. This is part of the revitalisation of the city centre, the building up the heart of Canberra. While revitalization can be wonderful, it is important to remember that what gives Canberra its heart is not offices, shops and apartments but human interactions such as care, concern and love. These are things the AIDS Action Council has provided in abundance for well over two decades.
If the Council is not a particular building, is it a government service contract, a group of dedicated staff or an energetic band of volunteers? These things are vitally important but I do not think they get to the core of what the Council really is. For me, the essence of the Council is a contained in couple of ideals that generate ideas and are brought to life by taking action.
The ideals of the Council are simple; to live in a world where no one gets newly infected with HIV and those that have HIV enjoy a good quality of life. Simple heartfelt desires, but difficult achieve in practice.
Contemporary challenges to effective action
"Rights are not won on paper; they are won only by those who make their voices heard." - Harvey Milk |
However, the interest in AIDS has diminished over time. The Commonwealth government is more and more reticent to approve direct and explicit materials that promote safe sex and injecting practices. The Commonwealth has not run a widely broadcast television HIV awareness campaign for over a decade. The process of achieving a fifth national strategy, has been excruciatingly slow, and is still not completed. It has dwelt on impractical issues and still does not contain clear funding commitments at the Commonwealth level. The partnership between governments, health professionals and communities affected by HIV is imperilled. The understanding and enthusiasm is necessary to achieve low infection rates are sadly dissipating.
The Commonwealth’s budget measures to force Disability pensioners onto active job search programs appear to have little empathy for people whose health is variable. The personal cost of treatment for people with HIV keeps increasing with additional charges for pills, GP visits and all manner of specialist services. The AIDS Action Council’s charity fund is facing ever-increasing pressures to assist with essential medical costs. Many people living with HIV face an even more uncertain economic future under current government plans.
Where did it all start?
The Council has worked hard in responding to the Australian AIDS epidemic, and it has done so with care, affection, energy and quite often a huge amount of courage and daring. The Council started out in 1983 with a group of concerned volunteers meeting in a lounge room and forming the AIDS Action Committee of the ACT. With the provision of a Commonwealth grant the committee was formalised into the AIDS Action Council of the ACT in March 1985. It started work under the leadership of John Westlund.
The early AAC was a disease-focused group concerned with all who were at risk. In the early days of the epidemic it was not clear who was at risk and how, we did not even have a test for HIV until mid-1985 and safe sex was a hotly debated idea. The AAC was the birthplace of most of the Canberra community-based HIV/AIDS projects and organisations that were later to get funding in their own right. A vital component of being a community-based organisation is working in a manner that engages, encourages and supports people most affected to be part of their organizations.
Through effective engagement, vast numbers of sex workers, intravenous drug users, people living with HIV and gay men have made enormous contributions to keeping Australia’s potential AIDS epidemic in check. The AIDS Action Council needs to work hard to ensure that local gay men and people living with HIV feel they have ownership of the organization.
In recent years the costs of insurance, audit requirements, contract management and all of the infrastructure costs of running an organisation have skyrocketed. This has made keeping a range of viable groups going much harder. However, the Council maintains its fundamental belief in keeping community ownership and direction of its efforts.
Council innovations
The ideals of the Council have generated an astounding array of new ideas for an extremely small organisation. These innovations have helped shape the overall Australian response to HIV and in many cases have been successfully exported internationally. These innovations include:
- Happy Healthy and Gay (now known by various aliases including Out there and doing it) was the first workshop-based program for Gay Men in Australia. Jeanette Baldwin designed it in the early days, while working with Peter Rowland. The program is successful and changed the direction of peer education in AIDS Councils around the country.
- In 1994 The Council took the initiative and funded the first resource to be produced in Australia for women with HIV and AIDS: "Treat Yourself Right..."
- In 1996 the council secured the first ever government funding for a Complementary Therapies Booklet for PLWHA in Australia. Much later, after intensive debate, the Commonwealth approved a national print run.
- More recently “Cover Yourself in Canberra” was delivered in the face of criticism from other AIDS Councils. It bought back simple and widely broadcast messages reinforcing condoms use. Now, three years later, this approach being employed all around the country.
These and many other projects have broken the established pattern of doing things. We have been innovative in bars, in saunas, in parks and in individual’s homes. Our passionate belief in striving for a world without AIDS has invigorated some of the best minds in Canberra and harnessed the enthusiasm of hundreds of people.
Putting it out there
The AIDS Action Council is not a shy group. We have always pursued a colourful public profile that encourages people to consider their personal safety and encourage them to spread the word about AIDS. Sometimes people thought we were a bit over the top, but it at least got people talking.
Some fond memories exist of:
- Forty adult sized walking condoms, jiggling through the crowd in the 1994 Canberra Festival Parade.
- The amazing unfolding of the Australian AIDS Quilt on the lawns in front of Old Parliament House, at the same time as Ted Gott’s magnificently curated Art in the Age of AIDS exhibition at the NGA.
- Being one of the earliest interstate AIDS organisations in Mardi Gras where we proudly declared our focus on volunteers.
The support of ACT politicians. Who could forget that red jacket, publicly getting into bed with Michael Moore and arriving pillion with the local lesbian bikers group for World AIDS Day. Many others including most Ministers for Health in Canberra have been vitally supportive of the work that we do.- Condom Miranda amusing passers by in many locations including the ACT Government shopfront.
If you get out there boldly and colourfully (and occasionally in a bright frock) you not only assist people to avoid infection but also hopefully reduce the stigma and discrimination often experienced by people living with HIV and AIDS.
Leadership and effectiveness
But we also deliver a serious message, sometimes quite firmly. At a previous Candlelight memorial one president even demolished the lectern as he thumped out the fact that we still have no cure for AIDS. We have spoken publicly and provocatively when things are not right. We are vigilant in holding governments and agencies accountable when their actions do not match the spirit of their words.
AIDS demands practical responses. For the Council this has meant adjusting the way things are done. We have moved from directly allocated grants to purchaser provider contracts based on outputs, we have upgraded our systems to cope with ever increasing levels of reporting requirements, we have had to curtail some activities to cope with enormous increases in public liability insurance costs, we have become extraordinarily flexible and adaptive.
All through this we have kept reinforcing the value of practicing partnership. At the local level this has seen the continuation of effective relationships between governments, departments, Community based organizations and various groups in Canberra. But it is hard work that requires extensive effort and extraordinary patience. This work cannot be done without sufficient resources; we wait to see if the necessary funds will continue to be provided under the Fifth National Strategy, whenever it is finally released.
The very hard work that we do
We do what we do because we care. With fairly limited resources the AIDS Action Council has assisted numerous individuals and their families through the end stages of dying from AIDS. This is not pretty work. We have provided 24-hour care teams even in hospitals, as the hospital staff did not feel they could cope. We have provided care teams to people who have recovered, and many who have not. Working (often as a volunteer) with people about to die is a significant burden to shoulder on behalf of the community at large.
If you happen to see the candle alight in the front of Westlund House reception area, you will know that once again we face a funeral of someone who has become our friend.
AIDS has robbed us of many vibrant, capable, lovable people. It has caused many others untold suffering through opportunistic infections and the uncertainty of waiting for a premature death. Despite the fear that AIDS generates the Council has been fortunate to have many brave individuals as members and friends. These are people who are prepared to take action to reduce the impact of AIDS here in our community.
Action = Life
Back in 1983 the AIDS Action Committee of the ACT was formed. Canberra is the only Australian AIDS Council to keep Action in its name. When confronting a danger as significant as HIV you cannot afford apathy, inaction or evasion. As we remember tonight those who we have lost, I ask that you take the time to consider what actions you will be taking in the coming year. Without your help the Council’s ideal of a world without AIDS is not possible, with your help, perhaps we can get a little closer.