Moments of creativity and connection: Supporting people living with HIV during COVID-19

During the COVID-19 lockdowns, peer-led support services for people living with HIV used creativity and peer skill to keep their communities connected and safe.

This post reflects on some of the ways the peer-led HIV sector adapted to the changing landscape brought by COVID-19 lockdowns and restrictions.

Overall, it is a heartwarming testament to how critical peer-led responses are in times of rapid change and crisis.

Estimated reading time: 6 minutes

Moments of connection and adaptation

Throughout the COVID-19 pandemic, there have been many moments of connection and adaptation within communities of people living with HIV. Such moments reveal the creativity and emotion that sustain embodied health movements.

Finding new ways to provide support

Online platforms have long promised to help peer and community organisations extend reach and access for people living with HIV. Over time, much of our informal networking and grassroots organising has shifted to social and personal media.

But when new rules force people living with HIV to stay apart, these shifts 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’s premise is 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 the Australian mainstream media.

However, putting a spotlight on stigma, judgement, and misunderstanding is also confronting — especially when our usual support structures and networks are disrupted.

Informal peer networks 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 You Can’t Ask That’s ‘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.

Moving events online

We also marked the International AIDS Candlelight Memorial (IACM) while national stay-at-home orders were in force. The IACM is one of the oldest and largest grassroots mobilisation campaigns for HIV awareness in the world. It annually supports affected communities to pause and publicly reflect on those we have lost and where we have come from.

The local event presented by Living Positive Victoria and Positive Women Victoria was rapidly adapted to stream to audiences on Sunday, May 17.

Historian and social researcher Dr Jen Power was a keynote speaker. On the night she said, 

Candlelight memorials embody the emotion, the creativity, and the performance that have always driven activist responses to HIV, internationally and in Australia.

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. Original arrangements performed by Low Rez community choir then overlaid these images.

The image shows the Low Rez Choir — a Melbourne-based male choir — holding candles while they sing at the the International AIDs Candlelight Memorial. There is red light shining on them.
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.

Beyond COVID-19: The future of health promotion for people living with HIV

Moments of connection sustain communities 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 keep responding to the rapidly developing situation. In any case, it will be a long time before many community members feel safe or comfortable gathering in large numbers. Furthermore, many members who are housebound or living far away will always benefit from more engagement through online platforms.

The image shows a sign on a desk next to a laptop that reads, "You got this".

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. We also need creative ways of involving the experiences and stories of communities to maintain a sense of ownership and participation in events.

The need for connection

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)
The image shows two hands coming from the left, palms down, holding each other. The background is red and the hands have red and blue light shining on them.

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 people process internalised fear and shame, emotions can flush and remake neural pathways. It is not uncommon for participants to experience feelings of relief, validation, and describe the weight of stigma beginning to lift, even just a little.

One day, we will be able to return safely 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 back, doing this lived and embodied work, person to person, face to face.

*To maintain the privacy of TIM members, we have reproduced posts (with permission) using first names only.

Timothy adapted this post from his article originally published in Poslink (Living Positive Victoria’s newsletter).

This post is one of a 3-part series published in 2020 during Australia’s COVID-19 lockdowns. These posts illustrate how the Australian HIV and hepatitis C sectors adapted to the shock of COVID-19. We wanted to celebrate the amazing ability of peer responses to adapt in times of rapid change in order to support their communities.

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