Coming Together, Staying Apart: What Taking Care and Taking Action Look Like on HIV/AIDS and COVID-19

This piece is part of a series on Autostraddle exploring the overlaps and divergences between the AIDS epidemic and the COVID-19 pandemic — many AIDS survivors have spoken out meaningfully about both the echoes of their previous experiences in the current moment, and the critical differences between the current pandemic (and the urgency of response) and the previous one and ways in which they can’t be compared. We want to highlight what there is to learn from elders and survivors of the AIDS epidemic, now and always, and to remember that HIV/AIDS and the state’s failure to support those living with it it is an ongoing reality globally, not a distant past.

According to the World Health Organization, there are currently two active pandemics: one is HIV and the other is COVID-19. Despite recently drawn comparisons from inside and outside of the queer community, the two pandemics are quite far apart. As anxiety-inducing and unfathomable as it may seem, the effects of the Coronavirus are in no way measurable against the impact inflicted on the queer community during the 1980s AIDS outbreak, though they do share some haunting parallels. According to the CDC, more than 675,000 people have now died from AIDS-related illness in the United States, with 50,628 people dying from HIV or AIDS between 1981-1982, the first year of its outbreak. The death toll for COVID-19 is strikingly close, with 46,996 deaths current confirmed (according to Google’s COVID-19 map). In terms of early mortality rate, the two pandemics are beginning to align, though HIV activist and founder of The PoZitive2PoSitive Initiative Morris Singletary shares concerns over drawing comparisons between the two. Singletary is a HIV survivor who lived through the peak of the outbreak and is now witnessing a global pandemic for the second time in his life.

A survivor of HIV and an avid supporter of other HIV-positive people, he reiterates that the comparisons between the two crises don’t quite make sense in terms of public perception. “There is a clear community effort to help stop the spread of Coronavirus, I cannot say the same about the early days of HIV.” He comments, “More is being done to contain this virus in its early days than HIV, which has been spreading and affecting people’s lives for [decades].” Janice Nelson, a who worked on the frontlines during the AIDS crisis as a hospice nurse liaison further comments that this lack of community effort was largely due to homophobia. “When we first learned about the virus in 1983, [health professionals] were told that this was a “gay” population issue. In fact, at first it was called Gay-Related Immune Deficiency. The CDC then changed it to AIDS (Acquired Immunity Deficiency Syndrome) later that same year.” Janice explains that she and other nurses were forced to learn about the sexual proclivities of gay men. “It was quite graphic in the description and made many of the nurses in attendance uncomfortable. The sexual details and negative information about the gay lifestyle tainted professional opinion about the disease and made it more about an unwanted lifestyle, instead of an epidemic that we had never seen before. I heard people say it was good to “weed them out”.

Deep-seated homophobia and hatred for queer people is ultimately the reason why the US government acted so slowly in combatting HIV, in investing in a cure, and in containing the virus. Homosexual and bisexual men were an ‘unwanted population’ and not considered a priority. Although there are major disparities in access to care in this pandemic, with already-marginalized populations hit the hardest with the least access to treatment, the widespread contagion means there is a general consensus that stopping the pandemic is a priority, something we didn’t see during the outbreak of HIV/AIDS.

Despite these important distinctions, there are poignant similarities: the rumors, misinformation, and the relentless pursuit to allocate blame. The hunt to assign liability to one community endangers the most vulnerable people in society, leaving them subject to further attack. Discrimination against LGBTQ+ people in the 1980s made people even more vulnerable to HIV, due to the shame that came with it. According to the US National Library of Medicine and Institutes of Health (NLM.NIH), shame was and continues to be a motivational factor in people living with HIV not engaging with or being retained in care: “Shame can prevent individuals from presenting at clinics for STI and HIV testing and can prevent an individual from disclosing their status to new sexual partners”. Heterosexual people were discouraged from interacting with queer people altogether, especially gay and bisexual men. This treatment further ostracized the gay community, discouraging them from sharing important resources that could have saved lives and seeking support when they needed it.

We know this abuse carries intense longevity, with people sometimes still referring to HIV as ‘the gay virus’ today. A witness to both pandemics, Singletary confirms the assignment of blame harms as much as the illness itself. He tells us: “I remember hearing about HIV when I was in the 2nd grade; I was told it was a punishment from God. I remember being in 5th grade when I first noticed the shame [attached], I didn’t know what [HIV] was but I already knew it wasn’t a good thing.” Singletary explains that HIV was always considered an exclusively gay illness, a punishment for gay men, until Magic Johnson was diagnosed and spoke about it publicly — but this didn’t remove the assignment of blame on the gay community. Johnson, along with queer people, was still subjected to disgrace, as HIV was considered the worst thing you could ever contract.

Our history proves the danger of recklessly assigning blame during crisis, and Chinese and other Asian people are currently experiencing this throughout the Coronavirus pandemic. What we can learn from the HIV epidemic, is that it’s incredibly important to reach out to our Chinese friends and neighbors during this time, ensuring they’re supported, respected, and have access to essential resources. Many Chinese people are currently subjected to intense bigotry born from long-standing xenophobia and heinous misinformation about their lifestyles circulating. And though it stems from different circumstances, it’s of the same vein which gay people suffered from during the 80s. Throughout March, President of the United States Donald Trump frequently referred to Coronavirus as “the Chinese virus”, with the prejudice towards the Chinese community even coming from the World’s leaders.

Janice Nelson, who was a hospice nurse liaison during the AIDS crisis, describes the horrendous prejudice the queer community faced, and how she worries Chinese people could experience the same level of suffering. “In 1983, I was sent to a critical care conference to learn about a new emerging disease called AIDS. As AIDS progressed, people were afraid to sit near [homosexuals], to eat near them. [Queer people] were shunned by society. They were treated like they were the cause of their own deaths and that it was justified because of their lifestyle, it was awful.” She adds “Hospice patients were not even visited by family as they lay dying of the disease. They were not held; the human touch was limited for them. They died lonely deaths isolated and shamed for being sick.”

Janice shares her concern over this, commenting, “Much like HIV, this is to direct culpability toward one certain group. I find this not only disturbing, but dangerous. It is discriminatory and reckless as we try to fight this horrible contagion. This reckless pursuit does not belong in medicine, and it does not belong here now. And, because of the 1980s stigma that AIDS/HIV attached to the gay community, it will never, ever go away. And that is a travesty.”

The negative impact against the Chinese community is already occurring, in alarming numbers. The Anti-Defamation League (ADL) confirm that since January 2020, there have been more than 44 serious reports of Asian American and Pacific Islander (AAPI) people being threatened and harassed on the street, with some victims being told to “go back to China” and being blamed for “bringing the virus” to the United States. Hate crimes related to racism in the UK and US have spiked in reaction to Coronavirus. Stop Hate UK confirm their organization has seen a surge in incidents reported by Asian communities and individuals. “There has been a significant increase in calls [to our helpline] from the Chinese community,” he said. “The incidents range from name-calling, through to spitting, through to someone having been pushed in the road in the path of oncoming vehicles.” Just a month ago, a young Singaporean man was badly beaten in London. The perpetrator allegedly said, “I don’t want your coronavirus in my country,” before attacking the victim.

The ADL have also been analyzing racist Internet posts and social media content (mainly memes) since the Coronavirus pandemic’s outbreak. They are monitoring negative online activity directed toward Asian communities, in reaction to the virus. They’ve uncovered a range of discriminative examples of ‘cyber hate crime’ including cartoons depicting an Asian “Winnie the Flu,” mocking references to “bat soup,” along with violent imagery.

The ADL recently posted some of their findings, writing in a blog post, “For months, there have been posts on notoriously extremist-friendly platforms like Telegram, 4chan and Gab linking the coronavirus to racist and antisemitic slurs and memes. Users across these channels regularly share racist messages or caricatures of Chinese people, mocking their eating habits, accents and hygiene. Posters on Telegram and 4chan appear to be cheering on the virus, hoping it will spread to predominately non-white countries, such as those in Africa.”

Even those who manage to go unharmed by the disease itself will be at risk for discrimination and violence, and many of those who are sick or who lose loved ones to the coronavirus will have to suffer racist microaggressions and violence on top of their illness and grief.

The impact of COVID-19 is certainly not softened by the lack of leadership and liability from the government. As the United States now overtakes Italy as the country with the most Coronavirus-related deaths, the effects of a narcissistic government have never been clearer. They have delayed taking appropriate action that could have prevented the spread of Coronavirus, that could have saved lives. What’s more, the lack clarity in government orders and announcements (paired with misinformation circulating the internet freely) leaves citizens confused and unprepared for the very real reverberations of COVID-19.

There’s a familiar gut-punch of grief and fear led by the unknown that’s reminiscent of the AIDS crisis – when uncertainty was a frequent, chilling companion. Gregg Gonsalves, who has been an AIDS activist for the last 30 years, tweeted a few days ago “I am so fearful and sad right now, because while I think there is a way out of this that minimizes the pain and suffering ahead, the President and his party have no interest in it, no conception of how to move forward. It means all this will go on longer than it should, be more cruel than it needed to be. This is one of the most shameful episodes in American history and it’s happening in real time.”

Despite the government’s lack of reliability during this difficult time, we have not lost hope. There are roles we in the LGBTQ+ community can step into to protect ourselves, one another, and those most vulnerable to the repercussions of this pandemic (much like the AIDS veterans who precede us did).

Activism has always played an integral role in the queer experience. Whether you’re actively involved in it or observing it, every queer person’s life and rights will have been improved activism in some way. From activist groups during the peak of the HIV outbreak all the way to Stonewall, activism has intersected with queer people’s livelihoods throughout history. During the 80s, the likes of activist groups like ACT UP (AIDS Coalition to Unleash Power) executed exemplary campaigns to strengthen the LGBTQ+ community and fight prejudice, while offering essential Aid to those most vulnerable to HIV.

This situation is the testament to the raw power of communication during crises, and how mutual aid can benefit us during uncertain times. As well as organizing pressure on state institutions through direct action, organizations like ACT UP worked to encourage impacted communities to engage in mutual aid and shared social responsibility – whether that be handing out condoms or offering emotional support to those ostracized as a result of positive HIV status.

When HIV was officially identified and it was discovered that the virus was transmitted through sexual acts and the exchange of bodily fluids, this led to the development of safe sex guidelines, making for less unprotected (and ultimately fatal) blood contact, which saved and extended lives.

This was the result of an inherently collectivist response, one where people took responsibility to alter their social practices for the benefit of their communities, encouraging them to adjust too. People do not change their usual practices overnight, and so this was based on a great deal of community education and support.

Much of this was based on the assumption that everyone was infected, so it broke down the barriers between those infected and those not, something US officials have been encouraging the general public to do as well.

Similarly, the Coronavirus pandemic has resulted in social media becoming an indispensable source of vital Coronavirus information. While, in many ways, social media is fertile ground for misinformation and the spread of hate (as ADL has shown us), many influencers, health officials and regular citizens with access to the internet are seizing the opportunity to dispel myths and help other people socially distance properly through online forums and platforms.

Whether it’s to exchange recipes, encourage people to stay home and socially distance, educate others about regular hand and surface washing, or simply offer emotional support and social interaction in an isolating time, many people all over the United States (and the rest of the globe) are using their platforms to exchange resources. Similar to organizers during the 80s who exchanged resources like information, food and healthcare products, the public is providing visibility and a platform for resource distribution to vulnerable people who are socially distancing and cannot access supplies and those displaying symptoms who can’t leave their homes. Since the lockdown was established, many citizens who cannot access specific goods have been posting Amazon shopping lists in the hopes that someone can help them out; NHS hospitals in the UK are even using Amazon Wishlists to request supplies such as masks, toothbrushes, blankets, and care packages, necessary for supporting patients suffering from COVID.

What’s more, crowdfunding efforts have been created across the globe to supply hospitals and care homes with personal protective equipment (PPE) – stepping into the role the government is ignoring. The United States and The United Kingdom, in particular, are experiencing a severe shortage of PPE, while the coronavirus surges on, leaving many healthcare professionals without adequate protection. As of the 18th April, members of the British public had raised over £50million for the NHS through platforms JustGiving, Virgin Money Giving and Crowdfunder.

Crowdfunding efforts have also been made to assist those laid off work, particularly food service employees and gig workers. The National Restaurant Association (NRA) launched a Restaurant Employees Relief Fund, offering grants to restaurant workers who’ve lost work due to COVID-19. In the US, alcohol brands such as Boston Beer Copany and Greg Hill Foundation launched the Restaurant Strong Fund in March, to support those out of work due to pub closures.

Of course, the ramifications of COVID-19 has brought on barriers we could never have foreseen – such as the challenges of social distancing. Community support and direct action are difficult when remaining six feet apart, though some ACT UP members are executing direct actions even now, while adhering to social distancing regulations.

The most notable lesson we can take from AIDS was about the power of communities coming together to take care of one another, to invigorate one another, and to fight. While an enforced lockdown leaves methods like outdoor protests and rallying difficult to arrange, we can devise more creative ways to organize. COVID-19 is and will continue to be painful for many people, but the extra time spent indoors presents a lot of available time and a myriad of ways to protect our community and organize against oppressive systems which put our neighbors at further risk.

One method for helping society (in and outside of the queer community) is through neighborhood support. Within the regulations of lockdown, you can post a letter offering help to those who need it, along with your contact details. During this process, it’s likely you’ll inspire others to follow in your footsteps and help the people they’re able to reach. In turn, you’re setting up a fast-growing support network for the community and making the crisis much easier for many people.

An online group called Covid-19 Mutual Aid has a list of local groups on its website, which is growing quickly. These groups are autonomous and communicate online, through social media and email, and each will have individual priorities and focus according to their assigned location. If you’re looking to set up your own COVID-19 Mutual Aid group, guidance from The Guardian recommends setting up a local group through Facebook, Whatsapp, or a simple email chain (depending on your neighbours’ IT skills). Their advice: “the smaller the group, the better.” A group for those who live on your street or in your building alone may be more effective and manageable than a district-wide support group. Many local communities and neighborhoods have set up social media groups (mainly on WhatsApp) to check in on neighbors, ensuring they’re safe and healthy, and are arranging to pick up goods for them when needed. You can also build Facebook pages for local communities, so neighbors can discuss the situation and share/request resources. These acts of neighborhood care and solidarity will become a legacy that holds endurance when we’re the other side of this crisis.

According to information released by WhatsApp, usage of their app has jumped by 51% since the Coronavirus pandemic began. They’ve witnessed a huge surge specifically in the amount of group chats made, and the app is being utilized for social support, organizing mutual aid, and sharing of information all over the world. The South China Morning Post reports that Hong Kong citizens are using WhatsApp to mobilise local communities. With an initiative called “Small Business Mondays”, group members can choose three small businesses to support through the pandemic. In India, survivors of slavery are using online groups to raise awareness about coronavirus among their peers in villages where many former bonded labourers are unaware of the pandemic and offer aid to poverty-stricken communities either unable to access resources or struggling to understand which resources are needed. Over in Paris, even medical professionals are forming online group chats in order to keep up to date with intensive care capacities and monitor supplies.

According to their data, tens of thousands of people have joined app-based community efforts to look after the most vulnerable in society by volunteering to pick up shopping, deliver medicine and even offer virtual dance classes and music lessons as a boredom buster. What’s more, WhatsApp are helping combat the spread of misinformation, by limiting the ability to forward messages that could contain false or misleading information about Coronavirus. Another lockdown friendly method for organization is online activism, which allows important messages to be amplified and to reach those who need the information most from the comfort of our own homes. It also allows us to focus on pressing matters that may be exacerbated or complicated by Coronavirus.

For Singletary, digital activism was not something he originally wanted to engage in, but something that proved necessary and important in a time of need. In 2016, he published a Live Facebook video titled #HIVandMe, in which he ‘came out’ about his positive HIV status, and truly began to understand the power of speaking up and engaging in activism. “The video was in association with organization THRIVE SS (where over 900 black and brown men access HIV support) and in it, I came out with my status. I got so many messages thanking me for what I did, asking me about where to get tested. I saw this was something I had to continue.” From Here, Singletary launched PoZitive2poSitive. His goal with this group is to keep “keep HIV negative people negative” using engaging activities and community education. Singletary’s work has reached thousands across the United States and has helped HIV positive people to extend their lives and become more informed, through his important, accessible resources.

Activism can always adapt to new technologies, new communities, and new barriers. Isolation is just one of those barriers. We’ve witnessed blocks before, and we will witness them again. Of course, the barriers presented by the ramifications of COVID-19 also have unique implications for the LGBTQ+ community. For transgender and gender-non-conforming people, the virus presents complications for hormone access. And for those living in unsafe abuse or unsupportive homes, isolation may exacerbate gender dysphoria. For queer people who work in the nightlife industry or sex workers who perform intimate labor, the closure of bars, clubs and other nightlife venues hinders their income, and thus access to other support resources. And for those who usually rely on their time spent with a chosen family, quarantine can trigger anxiety and make it difficult to access the social support they need to protect themselves.

akt, a charity supporting LGBTQ+ people through homelessness and other difficulties, provides a great example of how community support can adapt to lockdown-related restrictions, as they ensure their services remain open throughout the pandemic. Director of Services Lucy Bowyer says their priority during lockdown is to keep young people safe and prevent homelessness.” Since lockdown began, we have supported several young people to find safe accommodation to isolate in, where the alternative would have been the streets or staying in an abusive or at-risk environment. We’re also here to support people who can’t escape their current environment for whatever reason. For example, those living at home with parents who don’t use their correct pronouns or accept them for who they are. This can have a huge toll on mental health and it’s vital young people can continue accessing remote support.”

With non-essential public spaces (including some vital resource services for LGBT+ people) closing, everything has shifted to digital. This means charities and community services are adapting accordingly. Speaking about their adaption plan, Bowyer adds “We’re aiming to put out softer content online to support wellness and offer tips for staying calm and positive. We will also provide casework digitally, whether that’s via calls or through our live chat function ensuring young people stay informed. For example, we have many COVID-19-related pages on our website that take the official guidance on issues such as universal credit and social distancing but break it down into more digestible chunks and use queer-inclusive graphics.”

Bowyer’s insight emphasizes the need for balanced content; we must be able to escape as well as access integral information. What lends itself to both, and has been utilized greatly by activist groups, is art. What activist groups during the 80s accomplished was nothing short of lifesaving. They provided a place for exchanging resources and offering protest training, but they also protected and amplified the LGBTQ+ community through art, a vital comfort in times of crisis.

ACT UP photographer Stephen Barker told Dazed in 2017 that he photographed the group’s work to document “out of anger and fascination – a desire to make the invisible visible.” He talks fondly about the power of artistic activism during the AIDS crisis, stating: “Does photographing through your tears make the work better, more powerful? I don’t know. But it does offer power and agency in the face of oppression.” He also cites ACT UP’s ‘crazy creativity’ as one of the most effective tools for creating real results.

Queer activist group Far and Pride are capturing that spirit of art meeting activism, acting as a virtual Pride to offer an alternative to outdoor, protest and festival led Pride events (most of which have been cancelled due to lockdown). The team, which is made up of well-known queer artists Hannah Daisy, Wednesday Holmes and writer Prishita Maheshwari-Aplin use illustration, moving image and creative writing to focus on LGBTQ+ issues and assist people (queer and otherwise) through the impacts of lockdown, whether that’s by pointing their audience to important resources, or providing a fun, affordable recipe. Their content ranges from virtual panels (not unlike those we would see at an outdoor Pride event!), general guidance for queer people, intersectional queer support resources, and artistic activities with a LGBTQ+, organizing twist, such as their workshop on creating gifs to be used social media activism posts.

On Instagram, Maheshwari-Aplinuse writes, “Pride is such an important part of the year for the LGBTIQ+ community. It’s our time to unite with our chosen families and celebrate ourselves while continuing to fight for the rights of all our queer siblings. This year, with physical distance between us and growing uncertainty around the feasibility of Pride events over summer, let’s make sure that our community spirit and presence is stronger than ever by creating an online global movement.” The team go on to explain that many queer people will be feeling understandably anxious, scared and isolated now, so virtual activism and unity is the perfect way to inject spirit into the community. They also point out that this approach to Pride is perhaps more inclusive than the usual events, “This is a Pride Day that everyone can attend – whether they’re unwell, in hospital, bed-bound, sectioned or self-isolating.”

In the same spirit, a number of LGBTQ+ specific mutual aid groups have been set up in response to the pandemic, either ran by queer people, or for queer people. LGBT communities across the country are coming together to show each other solidarity, support and provide lifesaving services. For example, transfeminist care organization QueerCare has compiled resources for support workers and those taking part in mutual aid efforts, including how to safely deliver food and items to others.

SWARM (The Sex Workers Advocacy and Resistance Movement), based in the UK, are focused on the impacts upon sex workers, particularly QTPOC sex workers, during this uncertain time. They’ve created a list of resources on dealing with financial hardship, lowering the risk of transmission during work, and creating household action pans. Though they are based in Britain, much of their informational resources apply globally. On their website, the Stonewall organization have detailed queer specific resources, services and means of accessing Mutual Aid for the elderly, disabled people, transgender and gender-non-conforming people, and asylum seekers.

Before the pandemic is over, we must make it through the worst, which is yet to come. And though we should look forward to normalcy returning, an essential takeaway from HIV is to not forget. We must not forget how low governing bodies went, how slow the state responded even when the numbers of infected people spoke for themselves. We mustn’t forget the soaring hate crimes against Asian people, and the impact this is having on their communities, businesses and livelihoods. We must memorialize and document while we are in the midst of this crisis. We must use our voices and listen to those most vulnerable to COVID-19. HIV activists never forgot the fatalities, the ways vulnerable communities could have been protected, how the government could have acted faster, and their refusal to let those realities fade into the past has formed the backbone of the movement for better treatment and care in the present. They also remember the heroism and ingenuity of those who stepped up to fight oppressive systems and protect one another when governing bodies would not, as we are doing now.

We asked Singletary what message he’d like those of us fearing the pandemic to take from HIV survivors. He said, “let’s use this time to show people that we are already survivors. Let that be an example for the world – let’s follow the directions given [by leaders before us] to protect ourselves and move forward.”

Beth Ashley is a freelance creative writer and journalist based in South-East England specialising in health, sex and relationships, culture, and subjects related to the LGBT community. You can follow her on Instagram and Twitter.

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