Today is World AIDS Day 2023, and I want to share some of my story with you. I have been living with HIV for 40 years, since I was diagnosed in 1983 (only some 3% of people diagnosed that year are still alive). That makes me one of the first cases of HIV in Australia.
I have seen many of my friends and loved ones die from this disease. But I have also seen many advances in treatment and prevention, and I have learned to cope with the challenges of HIV and deal with the stigma that come with being HIV positive over these 40 years.
To day is not about me; it is about us as a diverse Community, a family if you will; the Body Positive: a body of people who have lived with HIV for a long time, and others who have lived with HIV for much shorter time.
So 40 years. What have we learned as the Body Positive?
At the earliest meetings in response to HIV we met in friends’ homes. At one of those meetings someone said, at the centre of everything we do should be the concept of “helping our friends out”. It was as simple as that, no career paths, no excel spread sheets, no timelines, no minutes, no agenda sheets, no cost centres and/or no income line, just doing what we could for “our friends”.
Things have grown a bit since those days: all those things are important, but simple friendship should be the touchstone for all we do for each other.
These days our ‘friends’ are gender diverse and culturally diverse, sexually diverse and linguistically diverse, young and old, HIV+ and HIV-. This diversity is a very good thing and days like today are a good time to remember our ‘friends’. Our ‘friends’ form the ‘Body Positive’.
From the earliest days we refused to be labelled as ‘victims’ and ‘patients’; we are not passive, neither are we helpless. Together we make a difference to the wellbeing of other HIV positive people, and our friends and allies: we cared for each other and we let others care for us when we are in need.
For well over 40 years we have stood with people – all people; we protest when people do not give us quality care (especially our First Nations peoples and people newly arrived in Australia), when people seek to fire us from our employment, try to evict us from our homes (a home is a very good determinate of health) or when people separate us from the wider communities in which we live and love. Unjust discrimination and stigma is of no value to anyone at any time.
This year, we use the Australian World AIDS Day theme of ‘inclusion, respect and equity’. We believe for the United Nations theme that our communities should be leading us. To be very clear: HIV positive people should be leading the way as we move into the future and continue to respond to the challenges that HIV places in our lives. Yes, we will get the help of professional bodies, and we must also be there in the room when decisions are being made that effect and affect any of us.
Recently I became aware that the circumstances for people living with HIV in the west and south-west of Sydney have changed, and yes throughout NSW. There seems to be a disturbing trend of new HIV acquisitions. In some cases, HIV that has been poorly and/or diagnosed too late has been among women. A number of deaths have occurred this year: these deaths were avoidable. We need to ensure that all women and men are tested for HIV where possible: in emergency departments, prenatal clinics and sexual health clinics etc. Our experience has told us that the earlier a diagnosis is made, the better the long-term outlook. Yes, this will cost money. In the long term, I believe we all will be better off. This springs from a notion as old as health care itself: prevent harm i.e., to do good.
So looking a little into the future, we need to continue to form and reform groups with us as representatives where decisions are made that are about us: as the slogan goes – nothing about us without us. Any media or statement that concerns us must have our voice in it. I encourage anyone with skills that are useful to us, to be on boards and committees that serve our interests, both in the cities and in the regions of our state.
Whenever HIV issues are being discussed, at whatever level, we need to be there; be it simple committees, conferences, or symposia etc, to the highest levels of government and health care. Our knowledge and experience will ensure that good decisions are made, and harm avoided.
We, the Body Positive are the most credible people to speak of matters about HIV. We may need technical assistance at times; some of that science and statistics can be complicated. We, the Body Positive, have done this in the past and must continue to be active – all of us, women and men of diverse gender, culture and sexuality. To be blunt we know our own lives best, we live those lives daily. For our part, we will take our medications regularly but only as informed people and with advice from our own people.
Positive Life NSW is our legitimate voice. Advised by Positive Life, we can live full and satisfying lives, as sexual people, emotional people, with dignity and respect.
I am not ashamed of my HIV status, nor do I let it define me. I have a fulfilling life, have a supportive family and ‘family of friends’. I take my medication every day, and I go for regular check-ups. I also volunteer with Positive Life and other organisations. It is not that hard, but living is best done in the company of friends!
Once we were people living with HIV and dying with AIDS: that has changed. We are now a Body Positive living with HIV. I may not be here in another 10 years (men in my family die at about 80 years old) but I trust our movement will be here long after I am gone.
We owe it to the many, many, people who have gone before us, people we have loved and cared for, whose company we have enjoyed and celebrated, mourned and grieved, and fought for, to live our lives in community with pride, dignity, equity and respect: and we owe it to each other too as we continue to live our lives with pride in self and each other, with dignity in self and each other, ensuring equity amongst each other, and most of all respect for each other.
Delivered as a speech at a 2023 World AIDS Day event in Sydney, NSW