About the Author
Living Positive Victoria is a peer-led organisation. They provide support and services for people in Victoria who are living with, or affected by, HIV. Timothy produces health promotion content for members and works across peer education, support, research, and evaluation.
Peer-led organisations are highly responsive to their communities’ needs. This is because most staff and leadership are community members — peers. As the W3 Framework shows us, peer skill is central to a peer-led organisation’s work. It drives their ability to stay closely attuned — and adapt so effectively — to their communities’ changing needs. We have seen a lot of this since the start of COVID-19.
We invited Timothy to share his insights on the impacts of COVID-19 lockdowns on people living with HIV. His post is a heart-warming testament to how critical peer-led responses are in times like these.
Moments of connection and adaptation throughout the COVID-19 pandemic reveal the creativity and emotion that sustain embodied health movements.
Online platforms have long promised to help peer and community organisations extend reach and access for communities of people living with HIV. Over time, much of our informal networking and grassroots organising has shifted to social and personal media.
But when people living with HIV are forced to stay apart, these innovations become essential.
During the early stages of national stay-at-home and physical distancing orders, the ABC released a highly anticipated episode of its hit TV series, You Can’t Ask That. The show is premised on airing the curiosities and judgements that surround misunderstood communities. For the first time, it featured people living with HIV.
Moments like this are big.
Realistic and true depictions of the lives of people with HIV are largely absent in Australian mainstream media. But putting a spotlight on stigma, judgement, and misunderstanding is also confronting — especially when our usual support structures and networks are disrupted.
Informal peer networks will often act quickly and intuitively to address community concerns. The Institute of Many (TIM) is Australia’s largest grassroots and online community of people living with HIV.
Steve*, a member from Sydney, posted in the group a few weeks after the You Can’t Ask That “HIV Positive” episode aired. He said,
“It took me days to be able to watch the episode … and I still haven’t finished it. It’s just not the same without having my poz community around.”
Sensing this need, TIM’s group moderators created a watch party so that members could view the episode at home together.
Ever since, TIM’s forums and platforms have continued to be a hub for live streams, seminars, support and discussion throughout the pandemic.
The International AIDS Candlelight Memorial (IACM) was also marked while national stay-at-home orders were in force. The memorial is one of the oldest and largest grassroots mobilisation campaigns for HIV awareness in the world. The IACM annually supports affected communities to pause and publicly reflect on those they have lost and where we have come from.
Historian and social researcher Dr Jen Power was a keynote speaker. On the night she said,
“Candlelight memorials embody the emotion, the creativity and performance that have always driven activist responses to HIV.”
Living Positive Victoria’s event team aimed to recreate this sense of performance, participation, and feeling.
In the weeks and days before, community members were invited to record and share their reflections on social media. The night’s proceedings were interspersed with footage of previous years’ memorials. Community members were shown holding candles, crowded close, embracing and standing side by side. These images were then overlaid with original arrangements performed by Low Rez community choir.
A montage of community members holding candles and crowd close ups recreated the performance, participation, and feeling of previous International AIDS Candlelight Memorials for this year’s COVID-safe event.
Those of us at home listened, watched and stayed silent together. Over 1,400 people shared the experience.
Moments of connection sustain community during times of stress. But these adaptations are part of the future of health promotion for people living with HIV in Victoria.
For the foreseeable future, public health orders will need to continually respond to a rapidly evolving situation. In any case, it will be a long time before many community members feel safe or comfortable gathering in large numbers. And many members who are house bound or living far away will always benefit from more engagement through online platforms.
Living Positive Victoria has successfully delivered a range of online seminars, workshops and over 230 peer navigation phone appointments since the end of March. This has given vital information, support and community resources from a peer-based approach throughout the pandemic.
Community members are willing to engage through these media. Our learning and evaluation shows that participants gain many of the benefits of in-person events and appointments.
We will need to take care to guide people with lower English and computer literacy through using these platforms. Creative ways of involving the experiences and stories of communities are also needed to maintain a sense of ownership and participation in events.
It is clear, however, that many people living with HIV miss being close.
Calendar events like the IACM and World AIDS Day are opportunities to socialise and catch up with old friends. In his post, Steve went on to explain that without being able to “look you in the eye and feel you” there is something missing.
“I know you’re all a keystroke away for a chat, and activism never ends, but it’s not the same. I don’t get that energy I thrive off.”Steve (TIM forum contributor)
Community and peer workers are acutely aware of the impact that face-to-face peer connection has as an embodied experience for people living with HIV.
Living Positive Victoria’s services, events, and workshops are often where participants meet another person living with HIV for the first time. As internalised fear and shame are processed, emotions can flush and remake neuropathways. It is not uncommon for participants to experience feelings of relief, validation and describe the weight of stigma begin to be lifted, even just a little.
One day we will be able to safely return to our workplaces, restaurants, bars, a sense of normalcy and the other parts of our lives that we put on hold. And when we do, peer and community support workers will be waiting to be back doing this lived and embodied work, person to person, face to face.
*To maintain the privacy of TIM members, posts have been reproduced (with permission) using first names only.
This post was adapted by Timothy from his article originally published in Poslink (Living Positive Victoria’s newsletter).
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.