When Shame Kills

It didn’t take long before the COVID pandemic was compared to the AIDS crisis. It’s easy to draw parallels between events that both lacked an organisational and medical precedent, hitting the world when it was already in the midst of other crises. It’s true that the way SARS-CoV-2 at first asymptomatically attacks our immune system in various ways is not too dissimilar to HIV. But what’s more important is that both viruses attacked us where we’re most vulnerable: our political convictions and scientific skepticism, and our need for human interaction. Just like during the AIDS crisis, it was the perfect opportunity for rumours, misinformation campaigns, and treatment methods close to superstitious witchcraft to take hold, and for groups to stigmatise the Other. 

Questions arose about what groups society deems expendable and who is to blame for the rise of infections, but there are some crucial differences between what happened during the AIDS crisis in contrast to the COVID pandemic. 

“I think there are links to be seen,” Chris tells me over the gazillionth Zoom call the universe of 1s and 0s has hosted in the last year. “I mean, one obvious one is that they (COVID and AIDS) are seen as a kind of revenge of nature against modern, very hyper-medicalised human society. Here we are in 2021, and a lot of the advice feels, if not pre-modern, very tentative.” 

Government advice to keep a distance and mask up might not feel particularly scientifically rigorous, Chris points out, but they nevertheless make sense to prevent spreading the virus onto others. In contrast to AIDS, the government response was significantly quicker and more proactive for Covid-19, although still not fast enough to prevent deaths that weren’t inevitable. Suddenly facing mortality in an age where death is virtually deemed a medical failure turned into a dark cloud which followed our every move, without ever seeming to evaporate. But as much as the threat of Covid-19 has dictated our everyday lives, questions of morality and shame were significantly different during AIDS. 

“With COVID, the effects of shame and of moral depravity and all of those mechanisms aren't really used, or if they are, they're used in a much more hushed up way for COVID, and in a way that isn't pitched at particular identifiable demographic groups,” Chris tells me.

In January this year, Atlantic writer Saahil Desai wrote a piece called What If I Just Don’t Tell Anyone?, reporting on the stories of people who didn’t disclose their infection to anyone. Sometimes this decision was made by super-spreaders who simply refused to quarantine, or by those who just didn’t want their families to worry. It’s safe to say neither wanted to be painted as the arch villains of the pandemic: people who supposedly took more risks against health guidance and got infected as a result, at least so the assumption goes. 

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Although the sources of shame are different, hesitating to admit your diagnosis is something all too common in the history of AIDS. One 2017 UK study found that 40 per cent of gay men in the UK didn’t tell their families about getting infected. Another study on HIV and shame by Phil Hutchinson and Rageshri Dhairyawan, also in 2017, confirms that shame not only prevents people from disclosing their HIV status, but ‘psychologically imprisons people’ to the point that they won’t attend STI or HIV testing appointments. Unfortunately, AIDS and the shame around its diagnosis is still disproportionately impacting many vulnerable groups today, particularly  communities of colour and queer people, and those who take part in injectible drug use. For as long as those communities don’t receive the adequate recognition and support they need, shame - and its consequences - are here to stay. 

“The context of HIV/AIDS in 1981 in New York and San Francisco and Los Angeles is that it emerges in a time where you've just had a decade of the gay liberation movement, and for the first time there is an assertion of confidence, or - very kind of fragile, but it's there - political mobilisation by queer people generally, but particularly by gay men.” 

“And you have this 'decade in the sun', as some people call it, and then suddenly the nightmare comes in, in the 1980s.” 

Books by notorious writers such as Randy Shilts’ And the Band Played on and How to Survive a Plague by David France all express the ubiquitous feeling that they were either expecting to be diagnosed with AIDS or felt that they deserved it, something that the language also helped perpetuate as AIDS was known as ‘gay-related immunodeficiency’ or GRID before changing to ‘acquired immunodeficiency syndrome’ (AIDS). 

“This is a situation of massive shame around your sexuality: The worst thing you can be as a man is to be gay. And for that to be combined with a disease that is so intrinsically tied with sexual practices just feels like a reinforcement of why you deserve this. This is the consequence of your dirty, depraved lifestyle and so on.” 

Besides the now well-known metaphors of cleanliness and dirtiness associated with infections and disease, AIDS was a perfect opportunity for homophobic society to attach a moral, or rather immoral, frame to a crisis which disproportionately impacted gay men. Far-right, religious evangelists come to mind such as Pat Buchanan who wrote in a column about AIDS in 1983: 

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"The poor homosexuals. They have declared war on nature, and now nature is exacting an awful retribution,” or our UK version of now retired chief police officer James Anderton, that ‘drug addicts’, ‘prostitutes’ and ‘homosexuals’, in other words, some of those most vulnerable to AIDS infections were "swirling in a human cesspit of their own making.” 

“I suppose there's something there about AIDS having a very visual presentation of a person who is dying of AIDS, who is ‘shrunken and loathsome of visage',” Chris explains to me, borrowing a phrase from Simon Watney. 

“So it's that idea that you are visibly decaying in front of someone. And that's an incredibly emotive and incredibly immediate disability of illness that we're not used to seeing anymore. To use another metaphor, you're kind of marked by the disease in a way that people who have various other illnesses, in at least some cases, won't necessarily be visibly marked in that way.”

The idea of being marked by AIDS is a crucial metaphor, as William F. Buckley, Jr. suggested in 1986 that gay men with AIDS should be ‘marked’ through tattooes on their butts. 

Sometimes, however, if shame is directed at the right target, it can be an effective tool for change - even during a crisis that’s so inextricably linked with personal shame and guilt. 

Grass-roots organisations such as Act Up (the AIDS Coalition to Unleash Power) and OutRage! founded by Peter Tatchell were some of the networks which used shaming to mobilise against those who were really to blame for the escalation of the crisis and government neglect. 

“That's where you start to see shame really being turned against the opponents of people with AIDS. You see mass sit-ins or lie-ins (also known as die-ins), where people take to the streets; and that happens across most of the West, and in some other countries too, like in South Africa.” 

“People would start throwing blood, sometimes pig or animals, sometimes human blood, on the White House lawn. They would storm big services, like St. Patrick's Cathedral in New York, which was stormed by Act Up, and you start seeing people with AIDS and their allies saying 'Well, no, the shame should actually land with people who are perpetuating this pandemic and who are allowing people to die. And who are whilst those people are dying either denying it or kind of saying they deserve it.’” 

Hit TV show It’s a Sin, which had such a big impact during HIV testing week that it likely contributed to record-breaking numbers of HIV test orders according to the Terrence Higgins Trust, presented one particular scene which nodded towards the discussion of who we should direct shame to.* In the heartbreaking last episode after Ritchie died of AIDS, his friend Jill confronts his mother’s complicity in her son’s death. In a passionate monologue, she points out how Valerie’s homophobia contributes to the shame that prevents queer people from opening up about AIDS, even in their own circle of friends. “He was ashamed. And he kept on being ashamed,” Jill says. “He kept the shame going by having sex with men, and infecting them, and then running away. Because that's what shame does, Valerie. It makes him think he deserves it. The wards are full of men who think they deserve it. They are dying, and a little bit of them thinks 'Yes, this is right. I brought this on myself. It's my fault, because the sex that I love is killing me.'"

“I loved that scene. I thought it was brilliant,” Chris tells me as we both confess our love for the show. 

“I think that was really interesting because the parents and the families of these mostly men, some women, and some non-binary people, suddenly appear into these men's lives when they were dying, and claim 'Oh, well, you know, I'm his mom and his dad, this is all about me. It's all about our family’ after having ignored him for 10 years or whatever, and just neglected everything about his life. They would appear in in these hospital scenes, and then close around him in a very claustrophobic and actually quite homophobic way.”

“The very people who were espousing family values and the kind of back to basics morality, whether that was John Major and Margaret Thatcher over here, whether that was Reagan in the States, whether that was the evangelical lobby, or whether that's just kind of ordinary homophobic families, those are the people who should feel the shame, rather than men who essentially just slept with someone.” 

Using conservative notions of personal responsibility and blame as a distraction from the need for government support was prominent both during the AIDS crisis and Covid-19. While queer people were targeted for having sex with others, our Home Secretary Priti Patel told people to inform police and health authorities if their neighbours were breaking lockdown rules. Neither methods fostered solidarity for those struggling during the same fight, and they most certainly did not prevent any infections. 

“I thought It's a Sin was good at showing how backwards the British Medical Response was to AIDS. These were hospitals that in many ways look like hospitals from the war. And, you know, there were these really kind of primitive nurses in black gowns, and you were just locked in a room and left to die, sometimes literally for years, with no explanation, and no kind of patient directed care at all. In Britain, there was a huge responsibility that needed to be laid at the door of the National Health Service, and the government made clear political decisions about where its support was going to go.”

With the vaccine roll-out for Covid-19, countries were eager to promote mass uptakes of vaccines, sometimes with the help of celebrities. We remember the impact Lady Diana had on raising AIDS awareness when she shook hands with patients and staff members in wards to disprove the rumours that you could get infected through touch - a gesture that’s very different from Boris Johnson shaking hands of hospital staff during the beginning of the pandemic. Regardless of who has the science on their side, prominent figures have an enormous influence on responses to healthcare measures. 

“We've got prominent celebrities trying to recruit people to get vaccinated and dispelling myths around the vaccine -and clearly, I think that's welcomed.” 

“I suppose, whilst it can be really effective, the only reason I'm skeptical is you don't want to then make that public figure be the story rather than the government. What can happen when you give individual celebrities the big front line on these things is that they actually can get the governments and the state institutions off the hook, right? Arguably, that's what happened a lot with AIDS. There was this big kind of grassroots effort by people to help people with AIDS and to combat the virus, and that was all pretty much from the charity sector. And it wasn't coming from either private companies or from the government.”

Around 25.4 million people are receiving life-saving AIDS treatment today, but there is still a long way to go in our fight against homophobia and shame associated with HIV infections. We’ve learned from AIDS and COVID how important human connection and touch is for our wellbeing, to the point where we’re willing to take risks at the expense of our long-term health. To make sure we approach these issues in a way that protects human dignity and safety, we need to start understanding what responses certain stigma triggers that currently prevent harm reduction. 

With the attention that shows like It’s a Sin and the pandemic have directed towards this issue, Chris hopes that we’ll find a way to keep this momentum going. 

“I don't want it to be yet another thing of people having this kind of big peak of insight and then it goes away again, which I think sort of happened with Black Lives Matter last summer and could happen with all sorts of movements and has in the past. So it's about how do you harness that? How do you get people to keep caring after it stops being a sexy talking point? And I'd love to tell you I have the answers to that, but I don't think I do.” 

In the aforementioned paper by Hutchinson and Dhairyawan, they write: 

"We know that poverty, culturally‐bestowed attitudes to sex and sexuality, laws on sex work, drug use, immigration, and poor mental health, to name but a few items from a long list, are significant drivers of infection rates, take‐up of testing, and development of clinical AIDS."

We need to stop viewing shame as a purely psychological, individual problem, but to point out that the sources of shame are deeply cultural, political, and social, and therefore all need to be considered when trying to eliminate it. With increasing exposure, maybe we will find a way to reflect on our shame - with honesty, accountability, and in a way that highlights the fundamental humanity which lies at its core. 

*spoiler, drop everything and watch the show first