2016 Sydney Candlelight Memorial Address
I want to start by talking about a painting in one of the rooms of 414 Elizabeth Street which is home to both Positive Life NSW and ACON.
The painting depicts an emaciated man in a hospital bed surrounded by his family and loved ones, in his last days, perhaps in his last hours, perhaps already lost. The father embraces his dying son, his mother and young sister embrace one another by the bedside, a black sleeved arm stretches forward from outside the picture – it maybe a priest - and holds the hand of the dying young man.
It is an uncomfortable image - an image of anguish and impending death.
Many people visit that meeting space and their reactions to the painting vary. Some people move quickly past, not looking at the image, perhaps intentionally. Some have been heard to say they can’t look at it. Others stop and study the work. They take it in and they take a moment to reflect.
It is never easy to reflect on the times depicted in that painting. They were times which for many of us meant a regular cycle of grief and loss, of attendances at the funerals of partners, lovers, members of our family or much of our circle of friends at that time - young people who were fit, healthy and vibrant - not that long before.
During that period, it often felt like a sort of emotional drowning – where there was no time to process and adjust to the loss of a dear friend or friends, before another was taken away. It was a time when many of us with HIV were brought face to face with the sobering reality that we too might soon die. And amidst it all was an environment of fear, and of an overwhelming sense of pain which we just wanted to go away.
When we come together each year for this Candlelight Memorial we give ourselves permission to reflect, to spend a moment within our own minds, and also to publicly acknowledge our grief and the losses we’ve suffered.
We are all here today because HIV has impacted us – and I think about how all of our lives might have been had HIV/AIDS not come along…. What would it have been like if we had all that talent, experience, energy, creativity and political nous still amongst us? Would our culture have been different and more vibrant - I wonder? Certainly, many of our lives would have been unrecognisably different. Different partners, different careers, different friends, maybe even a different country of residence, and definitely a quite different perspective on our own health and wellbeing.
We are diverse and our experiences are different. But what connects us is that HIV has shaped us indelibly. It shaped who we were in the time depicted in the painting I spoke of, it shapes who we are today. HIV will continue to shape and challenge us into the future, and like the virus itself, those challenges change over time.
One thing is certain however; no one can live in a state of permanent grief and loss and remain sane. So we choose, and must choose, to live positively and look forward to the future, and with hope. And there is much to be hopeful and grateful about. Modern medicine has provided us with the ability to live, to love, and to contribute. We’ve gone from a time of dying to a time of living. Amongst us are people who have lived with HIV for 35 years, and as we live longer and grow older with HIV we must learn from and respond to how the virus impacts us over time. Maybe we will get to see an end to HIV transmission in NSW. And wouldn’t that be wonderful! But it’s not all about ending HIV transmission, and we need to remember that…!
We must confront how living with HIV can be experienced differently because of gender, sexuality, age or geographical location. About half of all people in NSW with diagnosed HIV will be older than 55 by 2020. More than half of all people with HIV in NSW will live not only with HIV, but with one or more serious and debilitating chronic health conditions – conditions like anxiety and depression, cardiovascular disease, obstructive pulmonary disease, cancer and neurological disorders. These people’s health is not miraculously going to improve, just because we would like it to be so. As they age, their conditions will arguably become worse and more debilitating. They will need care and support, and it is vital that community steps up and provides these men and women with some compassion and dignity.
We must also confront the relationship between HIV and poverty, and HIV and our mental health. We frequently talk about HIV as a chronic manageable condition and while this is so for 40% of people with HIV in NSW, there is also a small but significant group of older people who have not benefited fully from HIV treatment, who stopped work because of illness, who live in poverty and social isolation and who are at times close to giving up and disengaging in treatment and care. You could call it passive suicide. If we want to be viewed as a community that cares, who behaves in an ethical, responsible and responsive manner, we will need to stop pretending that everything is going to be okay and face the reality that not all people living with HIV are doing as well as we might want to believe.
Increasingly, we will need to address the emerging problems of age, of multi-morbidity, of poverty and loneliness, and ensure that those who haven’t benefited fully from medical and economic progress, get at least some acknowledgment and support to live out their lives in the community in a meaningful and inclusive way.
We must also continue to confront the challenges of HIV related stigma and discrimination. We must continue to build the resilience of our community, and we must continue to value our peers and the strength of our shared experience. And we must ensure that whether diagnosed 35 years ago or diagnosed today, nobody living with HIV is left behind.
If we can do this, we will in some way honour the lives of our dead brothers and sisters who fought for dignity, for inclusion, for justice and for life.
Personally, I don’t think they would have deserted these people, and neither should we.