Our history of HIV activism is certainly a remarkable one.
Australia owes much to those committed individuals who at first challenged and then worked together with government to bring about change. The privileges people living with HIV enjoy today are due largely to those early HIV activists.
Sadly, many of them are not around anymore and of those who are, only a few have the energy to act up. Some are now senior and respected professionals in their own fields or within the community sector that emerged as a result of their struggle.
But what of the new generation of HIV activists? Have we really become a ‘slacktivist nation’? Are we all ‘armchair activists’, passively and virtually ‘liking’ every new cause? Are today’s self-proclaimed activists no more than professional marketers wanting to flex their multi-platform social media skills to improve their own employment opportunities?
Certainly, there have been seismic shifts in the way people now congregate, communicate and relate to issues. Networks are no longer limited by geography or post-reporting. Journalism has evolved and we now all have the ability to report news and to be followed. People can now be mobilised almost instantly. We may be physically disconnected, but we can all link-in to virtual community networks of like-minded people.
And if we look outside of HIV, for a moment — at gay marriage or refugee asylum, for example — we can see the attributes that we associate with traditional activism. We see community driven, well-attended protests and rallies often mobilised by social media. They prove that, when necessary, we are still prepared to front-up and demonstrate our commitment to a cause.
While there are still issues within the HIV community worthy of a rally — stigma, discrimination, treatment access, prevention, gender inequality and inter-generational challenges to name a few — they do appear less urgent than those we fought for in the early days; when HIV treatments were being withheld and lives were at stake.
But across the globe there are many individuals working hard to change opinions and attitudes, to break down stigma, to increase and improve access to treatments, to reach out to vulnerable populations and to make sure that governments work harder to protect and care for those living with HIV. And many of these individuals are working here in Australia.
The ENUF campaign is a great example of HIV activism at work today.
This anti-stigma campaign originates from within a government-funded community structure yet receives no direct government funding itself.
Online, individuals are able to investigate the research that sits behind the ENUF message. They can share their own experience of building resilience in the face of stigma and record the process of change as it happens. They can even sign a pledge to stand up and challenge HIV stigma should they encounter it; in other words, commit to becoming an activist themselves.
The ENUF message has been carried on the streets during Melbourne Pride March — not a ‘hostile’ environment, perhaps, but certainly one where we know HIV stigma exists. Even some of our cherished activists from the early days were there, carrying placards. ENUF has achieved activist status by bringing people together under a banner with a challenge they believe in.
‘Poz Action’ is another example of organisation-based activism. Launched by NAPWHA at the Australasian HIV and AIDS Conference in Darwin, Poz Action is a national movement aimed at reinvigorating the HIV positive community-led response to the current and future needs of all those affected.
Poz Action is about raising the visibility of PLHIV activity and prioritising key areas of advocacy.
The red stamp is now being used by PLHIV organisations across Australia to brand any work they do for the collective good.
But what about outside these organisations?
Positively Fabulous+ is one example. This art project uses mannequins as a device to challenge issues relating to the 17 million women living with HIV worldwide.
"Activism needs to be about getting attention in a way which challenges and stimulates discussion," says Melbourne-based organiser Kim Davis.
The campaign is working towards a fashion show of mannequins who have been adopted by individuals and groups to represent and embody the issues of women living with HIV both from Australia and around the world.
Positively Fabulous+ relies on social media to connect people and while its ‘protesters’ are separated geographically they are united in seeking universal change.
But what about local groups focused on local activism and change? Social media is supposed to facilitate civic engagement and collective action, but is there proof that this is at work in our community? The answer is yes.
There are real groups of HIV-positive Australians congregating in real time on social media for the purpose of activism. Some of this activist energy has even spilled over into the public arena.
Voices are emerging that are not grounded within the HIV establishment, but are free agents for social change.
If you’ve ever tuned into SBS or picked up youth press, you might have come across Nic Holas and his ever-growing band of merry men and women from The Institute of Many or TIM.
"One of TIM’s founding principles is to live openly and honestly as an HIV-positive person," says Nic.
The success story he is most proud of is one member who, upon joining, had not disclosed his status to anyone for over two years. Six months later he was appearing on national radio telling his story and using his real name.
"This is not because we found him and saved him," Nic reassures me. "The group self-manages and we have collectively developed a sense of pride about who we are and what we’re living with. While we’re not storming pharmaceutical companies like the previous generation, we are still out there and putting our faces to this chronic illness, some of us very publicly."
Nic co-founded this group completely free of institutionalised support, although they have partnered up with ACON to present an event called ‘The Social’. BBQs and beach outings may not be rallies or protests, but their members may well be the ACT UP equivalent of today, waiting in reserve for the call to arms.
By acknowledging all forms of activism, great or small, individual or collective, as being driven by committed people wanting to influence change for the better, we will be stronger as a community. Handing the baton of activism onto those willing and ready for the challenge is about succession planning and the ongoing protection of our privileged position.
The latest HIV Futures Seven report shows our continuing need for positive action. While ART means that AIDS deaths are practically unheard of in Australia, nearly one-third of PLHIV still live below the poverty line. Almost 50% of us worry about disclosing our status because of the current laws; and nearly a fifth of us have been diagnosed with depression in the past two years.
These worrying findings may not be enough to galvanise the broader community into rallies or protests, or even coax some of those original activists off their couches and into the streets; but it’s a reminder that there are still areas that need the directed energy of activism to challenge us to do better.
Inside and outside of the effective government-funded community structures, physical or virtual, there is a strong and vocal community of HIV-positive people who are not sitting idle or resting on the laurels of past success.
If we are to improve the lives of all people living with HIV, we need to acknowledge that these new activists are at work right now and to join forces with them.
Activism always needs new voices and new energy.
The nature of the epidemic and Australia’s response has changed. People with HIV are mostly living longer and better and can rise to the challenge of new responsibilities. We are better equipped now than ever before to invest in our own community, to support each other to test and treat and to help reduce and stop the transmission of HIV.
Photos, from top: ENUF activists congregate after the Melbourne Pride March in February 2013 Photo: LIVING POSITIVE VICTORIA; Poz Action tattoos were all the rage at the recent Australasian HIV and AIDS Conference in Darwin Photo: SCARLET AllIANCE; The Institute of Many (TIM) co-founder, Nic Holas Photo: ADRIAN TUAZON