Moments of connection
By: Tim Krulic
Regardless of how we have been affected, communities of people living with HIV have responded to the challenges of Covid-19. Moments of connection and adaptation during the pandemic reveal the creativity and emotion that sustain embodied health movements.
Only a few weeks into government stay-at-home and physical distancing orders, the ABC aired an episode of its hit show, You Can’t Ask That featuring people living with HIV. The premise of the show centres on airing curiosities and judgements that surround misunderstood communities.
The personhood and experiences of people living with HIV shouldn’t be up for debate. But moments like this are big.
Realistic and true depictions of our experiences are largely absent on Australian mainstream media and TV. The Institute of Many (TIM), Australia’s largest online community of people living with HIV, was instrumental in getting the show to air. Members pitched the idea to producers, and over a few meetings shared their inclusive vision for the episode. The result was that for the first time, the modern reality of HIV in Australia was shown on a popular program to a national audience. The faces and voices on the show belonged to gay men, heterosexuals, mothers, people who inject drugs, Aboriginal and Torres Strait Islanders, people of colour and people who have migrated here.
Putting a spotlight on the stigma, judgement and misunderstanding we sometimes face—though helpful to create empathy—can also be hard. As Steve, a TIM member from Sydney* posted in the group a few weeks after the show aired, “it took me days to be able to watch the episode after it was released, and I still haven’t finished it,” he said. “It’s just not the same without having my poz community around.”
With people’s usual support structures and networks disrupted, TIM’s group moderators created a watch party so that members could view the episode together. Ever since, TIM has been a hub for live streams, online seminars and forum-based support and discussion throughout the pandemic.
The International AIDS Candlelight Memorial was also marked during isolation. The memorial is one of the oldest and largest grassroots mobilisation campaigns for HIV awareness in the world, supporting people living with and affected by HIV to pause and publicly reflect on those they have lost and where the community has come from. With less than two-months’ notice, the local annual event presented by Living Positive Victoria and Positive Women Victoria was adapted to stream to audiences on Sunday, May 17. As historian, social researcher and keynote speaker Jen Power said on the night, “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 effectively 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 year’s memorials. Moving images showing community members holding candles, closely crowded, embracing and standing side-by-side were overlaid with original arrangements performed by the Low Rez community choir. Those of us at home listened, watched and stayed silent together. Over 1,400 people shared the experience.
This year’s theme, On the shoulders of giants, took on particular resonance for many as we live through another global pandemic. Speeches by the night’s MC and TIM co-founder Nic Holas, Dr Jen Power, and Positive Speakers’ Bureau members Sarah Feagan and Julien Fournier all touched on parallels between HIV and Covid-19. The fear, panic, loss of life and the social issues and inequities produced and revealed by both pandemics can resurface old traumas and were reasons to reflect for speakers. The hard-fought victories of the giants on whose shoulders we stand as people living with HIV in Australia and the ongoing death and suffering caused by HIV and AIDS globally, were thrown into sharp relief against the comparatively swift action of governments in response to Covid-19. Yet as Covid-19 deaths now climb into the hundreds of thousands in the US and at higher rates among over-policed and under-resourced communities of people who are black, indigenous and people of colour, the resemblance to the uneven impact of HIV is, again, telling.
These moments of connection sustained our community during isolation. However, as restrictions on physical distancing begin to ease, it is clear that many people living with HIV miss being close. 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 for him. “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.”
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 peer navigation and support services, and workshops for the newly diagnosed are often where participants meet another person living with HIV for the first time. As internalised fears and shames are processed, emotions can flush and remake neuropathways. It is not uncommon for participants to experience feelings of relief and validation or describe the weight of their self-stigma begin to be lifted, even just a little.
Throughout restrictions, online seminars for the newly diagnosed and peer navigation phone appointments have continued to successfully deliver vital information, support and community resources from a peer-based approach for people living with HIV. Once it’s safe, peer and community workers cannot wait to be back doing this lived and embodied work, person to person, face to face
* To maintain the privacy of TIM forums, posts have been reproduced with first names only, with permission.
Photo: 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.
Timothy is a health promotion officer at Living Positive Victoria and a PhD candidate at the Australian Research Centre in Sex, Health and Society at La Trobe University.
Parellels between the pandemics
By: Ross Duffin
Two pandemics bookend my adult life. HIV began when I was young. Covid-19 began when I had just retired. Both have huge impacts on our social and sexual lives. These similarities led many to claim that we could learn a lot from how we responded to HIV. I thought these claims were doubtful because the epidemics are very different. But as time progresses, I am struck by a few key takeaways that are important to keep in mind as we move into the next phase of the pandemic.
We rely on each other
HIV is mainly spread by shared injecting equipment or unprotected sex involving a person with HIV with detectable viral load. Unlike HIV, Covid-19 is spread by activities like going to the supermarket, work or having lunch in a restaurant. Those differences in transmission make a huge difference in how the pandemics are experienced.
In a lot of ways, HIV brought us together to respond. In Covid-19 it’s go home and get on Zoom – and sorry as a social life, Zoom doesn’t quite cut it. But in Covid-19 we are still reliant on everyone. If you are younger and healthy, your individual risk of serious illness from Covid-19 is not great. However, there is much greater risk of serious illness to your much older friends should you pass on the virus. One would hope given how well younger people have responded to this health crisis, that the responses to the incoming recession recognises them appropriately.
HIV was also responded to using modern public health strategies based on the Ottawa Charter where communities most at risk were heavily involved in the response. In Covid-19, we have gone back to the old public health approach led by public health doctors. A response where everyone is at risk like Covid-19 is probably better suited to a traditional public health model. But as the impact sets in and keeps persisting, it would be useful involving younger people and older people most at risk in helping with responses to the economic impact and longer-term adjustment to living in a world with Covid-19.
With this shared responsibility it is still important not to heap blame onto some segments of the community. I was on a tram just after restrictions lifted. Four nurses got on. They got abused loudly by someone on the tram telling them that people like them should not travel on trams. Early on there were a number of reports of verbal abuse against Asian people about Covid-19. For someone with HIV, like me, who has lived through decades of HIV stigma, it felt sadly familiar and equally ridiculous.
It’s important to promote the best available advice
Across both pandemics, initial important messages persist but new knowledge is often not sufficiently taken into account. For instance, it’s still the case that people get an HIV positive test result and think it is a death sentence. They know about condoms and safe sex – but sometimes don’t know that undetectable = untransmittable and that HIV is a treatable condition.
With Covid-19 the two initial guidelines – physically distancing and hand washing – are well known and remain important. However, there is more knowledge that needs to be utilised. We now know that most infections happen inside.(1 )And in these environments, it is not just physical distancing that is important – it is how often the air is refreshed and how the air circulates that plays a role in transmission. The longer you stay within an inside environment, the more the risk. For me this means when I go to cafes, I prefer ones with outside tables.
The second area where knowledge has increased is in mask wearing. Initial advice was not for mask wearing – often framed because the appropriate priority was for health care workers. Now the evidence is that if you have Covid-19 (and may not know) mask wearing is very effective in preventing onwards transmission.(2) Additionally, the evidence is now more solid that mask wearing provides some protection from infection to the wearer. I now wear a mask when I go to the supermarket or get on the tram.
We are in this for the longer term
On the way to effective HIV treatments, there were thousands of ‘breakthroughs’ and a lot of bad science. Once upon a time there was optimism about a HIV vaccine. Now that we know how HIV evades the immune system pessimism has become the norm.
Each virus is different. There is more reason to be optimistic about an effective vaccine for Covid-19 – but the oft quoted statistic of 6% success rate for any vaccine is quite dependent on what virus you are talking about. Covid-19 has some tricks that may create difficulties in vaccine development. It is also often much harder to get effective vaccines for older people – who are those most at risk of serious illness. And even if an effective vaccine is developed by early next year, rollout and manufacture will take 12 months or longer. There has been a lot of news about some treatments having some benefit. Perhaps combinations of these given at the right time could show extra benefit. However, the costs involved in scaling up manufacture are huge. If a vaccine proves difficult this will be necessary, but I’m not sure any treatment strategy yet shows enough benefit for mass roll out.
So it seems to me, like HIV, we have to adjust to Covid-19 being with us for the medium term at least. This will change how we live our lives – and
I’ve already been talking with some of my close friends about the sort of strategies we will use for living in a Covid world – to replace the things we can no longer do. And as this goes on, I hope my life gets bookended by an effective Covid vaccine (I’m hopeful) and an effective HIV vaccine (less hopeful) and we learn that science works and use it to apply where appropriate – such as a better response to global warming. Probably the biggest lesson from HIV is that pandemics have consequences on mental health. Be aware – look after each other and value your friends.
1 Howard, Jeremy, Austin Huang, Zhiyuan Li, Zeynep Tufekci, et al. 2020. “Face Masks
Against COVID-19: An Evidence Review.” Preprints.
2 Nishiura, Hiroshi, Hitoshi Oshitani, Tetsuro Kobayashi, et al., MHLW COVID-19 Response
Team. 2020. “Closed Environments Facilitate Secondary Transmission of Coronavirus
Disease 2019 (COVID-19).” MedRxiv.
Panic, fear and the racialised others of COVID-19
By: Aashvin Jeevan
The racialised construction of Covid-19 and the pandemic’s economic fallout have disproportionately affected the safety and wellbeing of communities of people living with HIV in Victoria, writes Aashvin Jeevan.
There remains much to be revealed about the natural origin and exact timing of the early spread of the novel coronavirus that causes Covid-19.
From December 2019 however, reports of a serious outbreak in the Chinese city of Wuhan in Hebei fuelled perceptions that Chinese people in Australia were a risk to the community. Amid an air of panic, travel bans also cast Covid-19 as a foreign invasion. Although border control and quarantine have now effectively controlled new transmissions from overseas in Australia, travel restrictions were unevenly and haphazardly implemented. Despite outbreaks in the US and UK proving to be far less controlled and more deadly than in Wuhan, travel bans to these countries only came into force when all travel outside of Australia was prohibited, almost two months after bans to and from all of mainland China were announced.
These developments powerfully exposed racist attitudes and beliefs against people of Asian appearance in Australia.
On April 22, ABC News reported that Asian Australians have been victims of assault, refused services and their property damaged; one report punctuated by photographs of a spray-painted message on the garage door of a Chinese family’s home linking Covid-19 deaths to China.(1)
These racist assaults and accusations of blame targeted at Chinese Australians and the Asian community can be likened to the branding of gay men as deviant, unclean and responsible for the rise of AIDS in the late 80s and early 90s. Early efforts to conceptualise HIV resulted in the othering of the LGBTQ community at the time, segregating the perceived disease carrier from the rest of the ‘healthy’ community.
This xenophobic social construction of infectious disease as an illness of ‘the other’ is now reflected in the racism faced by some Asian Australian communities since the Covid-19 outbreak and is leading to fear and mistreatment of the Asian community, some of whom are also disproportionately affected by HIV.
Joel is a young Malaysian Chinese man who arrived in Australia as an international student in 2018. Since then he has graduated from film studies and currently resides in Melbourne. While living here, Joel was diagnosed with HIV. He recounted to me his experiences in the months since the pandemic began. During trips to the supermarket white Australians treat Joel with fear based on racist assumptions. Over the phone, Joel shares his anger and frustration. “People stare at me at the supermarket. One group of teenagers made a scene of deliberately avoiding me and my friend,” he said. “They turned a corner, saw us, then screamed and ran.” Even his home is an unsafe space. This xenophobia continues online, underlined by the community’s complacency towards this behaviour. According to Joel, there exists a lack of unity within the community and this has worsened since the pandemic.
As the Covid-19 pandemic unravelled in Australia, one of the implications of attempting to flatten the curve is 600,000 jobs lost in April. Joel has been fortunate to find and keep his job during the period of self-isolation. However, many international students, travellers, workers and other migrants unable to return home are among those who are ineligible for Centrelink payments have had to tough it out with little aid. People born overseas make up key communities of people affected by HIV in Australia.
HIV surveillance data shows that while the proportion of Australian born men who reported sex with men as their risk exposure is falling, the proportion of men and women born overseas being diagnosed in Australia is rising.(2)
As of March, just over half of all people who accessed Living Positive Victoria’s peer navigation program were born overseas.
In recognising a lack of financial support aimed at cushioning the effects of the outbreak for these communities, Living Positive Victoria applied for and received funding for targeted financial relief. One-off payments are administered through the peer navigation program for people affected by Covid-19, irrespective of citizenship or visa status. Living Positive Victoria is also assisting people without Medicare who usually import or travel with their ARV medication with streamlined access to compassionate pharmaceutical schemes.
Joel hopes to find collaborative work and freelance in his field of study once things return to normal. He intends on applying to be a permanent resident of Australia but is preparing for the challenges that might rise due to his positive HIV status. In the meantime, he depends on his close-knit circle of friends for safety and hopes this discrimination towards Chinese people and Asian Australians subside.
1 Jason Fang, Samuel Yang and Bang Xiao, ‘Racist
coronavirus graffiti sprayed on Chinese-Australian
family’s home in Melbourne.’ ABC News, 22 April, 2020.
2 Kirby Institute. 2018. HIV, Viral Hepatitis and Sexually
Transmissible Infections in Australia 2018 Annual
Surveillance Report. Sydney: UNSW.
Photo taken by Collingwood resident @joshuabadge detailing graffiti of racist slurs spray painted on an Asian family owned cafe near his house. Yarra city council removed the slur later that day.
Disclaimer: Poslink is published by Living Positive Victoria. All views expressed are the opinion of the authors and are not necessarily those of Living Positive Victoria, its management or members. Copyright for all material in Poslink resides jointly with the contributor and Living Positive Victoria.