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SOCIAL DIS – EASE: A reflection

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Excerpt from a forthcoming CSA&G monograph

by Mary Crewe

Folks, we either have a country or we don’t[1]

Earlier in 2020, Paul Simon recorded from isolation, American Tune for Til Further Notice 03/19/2020:

I don’t know a soul who’s not been battered

I don’t know a friend who feels at ease

I don’t know a dream that’s not been shattered

or driven to its knees[2]

 

In her book, Regarding the Pain of Others, Susan Sontag (2003:5) makes the point that after WW1, there was the realisation of the ruin Europe had brought on itself. That is what we need to reflect about when we think about COVID-19, the lockdown, the destruction of the economy and surely the fracturing of society.[3] While the virus was a random event and circled the world very rapidly – the response – the shutting down of society and the economic and social consequences that will follow, were entirely the decision of our own and other governments, backed up by the hysteria and anxiety generated by WHO and the pandemic of panic that was created by the media. The early responses late 2019, set the scene for what was to follow. Mainstream media revelled in crisis and drama and rising hysteria and the South African media has largely followed suit. One notable exception is the news updated regularly by the Swiss Propaganda research group (https://swprs.org/a-swiss-doctor-on-covid-19/) offering fully referenced facts about COVID-19, provided by experts in the field, to help readers make a realistic risk assessment.

We are in the nightmare of a random control trial of one. There is no control group, just the experiment. No placebo, just the untried drug.  The state is now invested and locked into lockdown orthodoxy. If it works and the epidemic is contained, those who imposed this will be heroes, if not they will be able to claim that they were acting on the best evidence available at the time. The bio medics and the epidemiologists will win either way.

The National Institute for Communicable Diseases (NICD) exhorts us to “play your part”’ in the fight against #COVID19. “Follow the rules, and cooperate with healthcare professionals,” so too the politicians who will also have a greater arsenal of weapons for social control and further action.[4]  A phrase much-beloved of politicians is that they are “following the science”. Mostly however, this is being used “far more as a blame-deflecting tactic than as an acceptance of the disagreements, hypotheses, uncertainties, and traditions of rigorous questioning of actual science.”[5] The National Security Agency whistle blower Edward Snowden warned that governments are using the coronavirus to build an “architecture of oppression”.[6]

The world, said Edward Said is full of, “not so much intellectuals, but experts and professionals – and there is a great pressure on them to commodify their skills and expertise in a given field. And by virtue of that they then belong to a community of experts whose whole role is selling the wares to the establishment. That the principle goal in mind is not to tell the truth, or to say what the alternative to the present is, but rather to maintain the status quo, to satisfy the customer – to represent the ideas of power that rule the world in which we live.”[7]

What we have seen, are seeing with COVID-19 is the array of experts on our TV screens telling us what we ought to know, what we ought to do and how we ought to behave. The public health crisis has hastened the transition to autocracy, and there are serious doubts about the capacity of countries to effect a course correction once the threat from the virus abates. S. Y. Quraishi, the former Chief Election Commissioner of India, writes that, “Joseph Cannataci, the UN special rapporteur on right to privacy, has rightly observed, ‘Dictatorship often starts in the face of a threat.’ Earlier it was the invisible and distant threat of terrorism that demanded obedience, now it is the threat of pandemic – a fear closer to home – that is pushing people to give away their rights.”[8] The question is for how long?

The imposition of any kind of emergency, formal or informal, without an expiry date, should be cause for deep anxiety – as is the case with the current Lockdown 4 where there is no sense of a time frame – just the implicit threat that one way or another it will depend on how we all behave.

This is political science, in other words, as opposed to empirical science.[9] As Lionel Shriver wrote, when this is all over we deserve an enquiry – conducted by independent scientists who’ve not attached reputations to any policy or prediction.[10] In years to come, we too will see that this was a plot against ourselves, or as in the world of sport the disastrous own goal.

Of course attempts to curtail epidemics raise – in the guise of public health – the most enduring political dilemma: how to reconcile the individual’s claim to autonomy and liberty with the community’s concern with safety.[11] How does the polity treat the patient who is both a citizen and a disease carrier? When does the citizen become merely a subject? And in the end what is most important, the rights of the infected or of the uninfected? Sometimes, as Sontag wrote, a disease is just a disease.[12] But, such is the power of fear, of the unknown, of infection, of epidemics, that diseases become powerful metaphors for social issues beyond the death and the pain that they cause.

From the earliest times to the present, epidemics have affected human history in myriad ways: demographically, culturally, politically, financially, and biologically. Humans have never known a time in history when epidemics did not loom large. This is as true today as it ever was. And, despite claims that we would defeat it we are still living with HIV, with the shadow of cholera, with TB, with the memories of Listeriosis. All of these it was claimed would change the world as we knew it. In the end, though, we have learned to live with them rather than be controlled by them.

In this way we, too have forgotten about them.

In 2018, a total of 63 000 people died of TB in South Africa and the WHO estimates that around 301 000 people fell ill. There is, however significant uncertainty about this estimate since there is a 95% chance that the real number lies between 215 000 and 400 000.[13] AVERT estimates that South Africa has the biggest and most high-profile HIV epidemic in the world, with an estimated 7.7 million people living with HIV in 2018. South Africa accounts for a third of all new HIV infections in Southern Africa. In 2018, there were 240,000 new HIV infections and 71,000 South Africans died from AIDS-related illnesses.[14] And let’s not forget that South Africa, in 2017, had the worst outbreak of Listeriosis in global history.

There are no daily mention of AIDS and TB in the news, no condolences to their families, no flags being flown at half mast, no saluting of the health care workers, and no social panic about drug resistant TB.[15] All these diseases have available treatments and yet, these figures are astoundingly high.

Bambi in the Headlights

It’s astounding how various Ministers can, without shame or irony, say that COVID-19 has shown us the inequalities in this country. The lack of water, of power, of roads and transport. How could they not know this intimately? Why have they not acted before with water tanks and mobile support units? It’s not as if we have a shortage of labour – far too many people available for such work. But it’s part of finding an external agent to blame. This is the result of Apartheid – correct – but that’s not a new insight. Close your eyes and you would think that you were back in Apartheid South Africa, ponderous ministers having interminable press conferences surrounded by compliant bureaucrats, and brooking no questions or dissent.

Growing up under Apartheid you were schooled on the irrationality of power. On the capriciousness of Ministers and politicians making things up on the hoof, deciding what was good for you and what was not. We listened to Apartheid Ministers saying why Black people should not have access to alcohol or good housing or education. We hear it again. Apartheid, of course set the pattern for how we live, but what is actually happening to change this?  In 25 years, many kilometres of piped water can be laid, many flushing toilets can be built at schools, many points of power can be connected, many panes of glass can be fixed in schools and chalkboards replaced. The fact that there have been gains in these things does not make the absence right, it makes the insult of poverty worse.

It cannot be that these terrible social inequalities are only now being exposed by COVID-19.

Hierarchies:  Necessary and essential?

How are the lockdown decisions made? There is the fiction of the collective but that is disingenuous. This is a modern Cabinet working in a modern, constitutional democracy. It is not an NGO governed by the collective. Who determines, during this time, what is necessary? Who decides that it is possible to buy a winter duvet but not a cotton duvet cover? That expensive bubble bath can be bought, but not short-sleeved shirts?  We have debated the cigarettes and alcohol and hot chicken endlessly and there are reasons that transcend public health at play. Smoking will not add to your risk of the virus (it is possible it may be protective) nor will alcohol.[16] The lockdown started as necessary to contain the virus and then morphed into moralising, irrationality, seeming indifference and a lack of care.

As they (and we) regard the pain of others the various politicians claim to care – but they don’t, not really. No, “we” should be taken for granted when the subject is looking at other people’s pain. The failure of these politicians is one of imagination, of empathy – we do not hold the lived reality of people in mind.[17] Compassion, is an unstable emotion. It needs to be translated into action or it withers.[18]

If they cared, they would take and use the money from the “sin” taxes, they would clarify and simplify the lockdown conditions, they would allow exercise all day and they would admit to failures of government.

This is why the rhetoric of “our only interest is our people’s health” feels no longer avuncular but tinged with something more sinister.[19] In the same way that Sontag asks who the “we” is – who is the “our” in this? In far too many of the comments made by people in power there is a sense of power, of patronage or patriarchy and the sense that the populace – we the people – have to be controlled, brought into line and shown the folly of our ways. Were there a real understanding of ‘our people’s health’ then there would be no ban on cigarettes, alcohol or hot food. The moralising that comes from some of the medical commentators about the costs of emergency services, and of the health benefits of not smoking or drinking, are simply fatuous in relation to COVID-19.

In addition, the threats and bullying made by some of the decision makers are simply markers of a profound disrespect for “our people”.

“For Minister Cele to treat the public as errant schoolchildren – if one of you misbehaves, none of you can play outside – is behaviour that is way beyond the scope of the [Disaster Management] Act. Indeed, it has no place in a constitutional democracy. To be sure, in an authoritarian state, or sadly the USA of President Trump, collective punishment is employed. But in a constitutional democracy, such threats should have no place.”[20]  People who deliver threats of this kind have no place in senior political positions. Listening to this kind of menacing paternalism are we really surprised at the levels of sexual and gender-based violence in our country?  What is our nation’s beleaguered identity in times of crisis?[21]

What is necessary?

By the same reason, what or who is essential? We are allegedly all equal but some are more “essential” than others, we have a new hierarchy. Those that are now regarded as “essential” are also those that society tends in “normal times” to neglect and abuse. Teachers, nurses, refuse removal workers, store cashiers and many, many more are now “essential”. We have never considered them that before – if we did we would have paid them “essential” wages. We would make sure that the disparity between the earnings of doctors and nurses was not so vast, or between civil servants and the people employed in the local and provincial authorities who actually do the work.

It’s easy to understand the cynicism. Please don’t blow the vuvuzelas at 7pm, clap on Thursdays, cite us in speeches when at all other times the people now regarded as “essential” rank very low in the employment hierarchy – and whose professions are dismissed with disdain by many middle-class people and so called “captains of industry”. It is also easy to understand their fear. Never respected, before but now you’re placed in the frontline as essential to the response.

Who is essential?

We have been here before

“In September 2005, Dr Nabarro, the WHO’s public health expert coordinating the response to avian influenza, told the Associated Press that a global avian influenza pandemic could kill 150 million people worldwide.”[22] “The overall human death toll was low — in the hundreds — but scientists and government officials feared that the virus could ignite a human pandemic reminiscent of the catastrophic 1918 Spanish flu. Emergency plans were drafted, experimental H5N1 vaccines were created and tested, antiviral drugs were stockpiled. And then … nothing happened.”[23]

In 2020, in his COVID-19 narratives, Nabarro claimed we would see explosive outbreaks in just 2-3 weeks, a pandemic that doubles in around 2-5 days, which means an 8-fold increase in a week, a 250-fold increase in three weeks and a 1000-fold increase in 4 weeks – the WHO was projecting terrifying levels of world deaths.[24] Bill Gates made the point that, “this is a nightmare scenario because human-to-human transmittal respiratory viruses can grow exponentially … [and] … that curve would never bend until you had the majority of the people infected and then a massive number seeking hospital care and lots of lots of deaths.”[25]

So who do we believe? Increasingly the bio medics – the “expert” virologists and epidemiologists are telling us that there is a great deal about this virus that we do not know or understand. That does not stop them, confidently, from speaking with authority. If they got it so wrong with avian flu, is there the possibility that they could be so wrong again. Dissenters are seldom listened to, and no one seems to be anxious that the Imperial College study (not peer reviewed and later admitted to be flawed) was the one that set the tone.[26]

At the start of the HIV and AIDS epidemics we were faced with similar reactions. There was social and political panic. There were calls for isolation and quarantine. In our country we faced calls for the criminalisation of infection, for AIDS to be a notifiable illness and for people not to consume alcohol as this would lead to a lowering of inhibitions, unsafe sex and infections. Early on there was the anxiety and fake news about touching, kissing, saliva, and sharing utensils. AIDS, we heard, would change the world as we knew it, destroy the country, the region. It would cripple industry and the bureaucracies. There were dreadful images of marauding bands of young people threatening our security and many apocryphal stories of deliberate HIV infections or horrifying acts that required prompt action.[27]   None of this came to be. The wild projections of the numbers that would be infected and die were wrong, over dramatised and in the end we live with AIDS.  Indeed we forget now about the daily toll that AIDS takes on the society.

People are now saying that we need to “learn” to live with this virus and not to be controlled by it. We need to understand it and manage it. This message is not the one that the stages of lockdown give us – that message is that we are controlled by and at the mercy of this virus.

This has led to discomforting “war talk”. Boris Johnson referred to COVID-19 as an “invisible mugger”.[28] President Ramaphosa has said that we will need to think “post war”.[29] Essential people are regarded as being on the frontlines, fighting “the war” in the trenches. The economy was “destroyed” by COVID-19, as if this virus has declared war on the economy.  In fact, being controlled by the virus rather than controlling it – a clear and rational decision was made that “we” would destroy the various economies of the world by shutting both them and populations down. Along with the war talk we have the exaggerated use of language.

We have seen all this before – James Baldwin may have been right when he claimed people are trapped in history, and history is trapped in them.[30]

Being a spectator of calamities taking place in another country (or even one’s own) is a quintessential modern experience: “the cumulative offering of more than a century and a half’s worth of those professional, specialised tourists, known as journalists. These journalists come together now with a new powerful force of bio medics and politicians.”[31]

In the end – a peasant that Inspector Salvo Montalbano met in the pursuit of solving a case said, “I don’t think, Mr ‘Nspecter. I don’t wanns think no more. The world’s become too evil.”[32]

It has, but if we are to try and understand the calamity that has taken place in our country – we need to remember that there must be criticism: “there must be a powerful critical consciousness if there are issues, problems, values – even lives – to be fought for.”[33]

 

[1] Osnos, Evan. How Greenwich Republicans Learned to Love Trump, 2020 https://www.newyorker.com/magazine/2020/05/11/how-greenwich-republicans-learned-to-love-trump#intcid=recommendations_default-popular_d96957bf-198e-4b8c-92bc-f729db3fff0c_popular4-1 [Accessed 5 May 2020]

[2] Thurschwell, Pamela. American Tunes for Coronaviral Times: Bob Dylan, Paul Simon, and John Prime, 2020 https://lareviewofbooks.org/article/american-tunes-for-coronaviral-times-bob-dylan-paul-simon-and-john-prine/?utm_source=Los+Angeles+Review+of+Books+Subscribers&utm_campaign=ffd60b05fd-02%2F16+Newsletter_COPY_01&utm_medium=email&utm_term=0_06979e2d46-ffd60b05fd-345801969&mc_cid=ffd60b05fd&mc_eid=a15351b95c [Accessed 5 May 2020].

[3] Sontag, Susan. Regarding the Pain of Others. (New York: Picador, 2003), p5.

[4] This quote is the slogan being used by the NICD in reference to Covid-19.

[5] Cowper Andy. “Slippery Language and Defensive Politics Try to Hide the Real Problems,” The BMJ Opinion, 30 April2020. https://blogs.bmj.com/bmj/2020/04/30/andy-cowper-slippery-language-and-defensive-politics-try-to-hide-the-real-problems/ [Accessed 4 May 2020].

[6] Swiss Research Propaganda. “Facts about Covid-19,” Swiss Propaganda Research, 2020.  https://swprs.org/a-swiss-doctor-on-covid-19/ [Accessed 2 May 2020]

[7] Tariq Ali. Conversations with Edward Said.  (Seagull: New York, 2006), pp.110.

[8] Quraishi, S. Y. Across the World, the Coronavirus Pandemic Has Become an Invitation to Autocracy, 2020. https://thewire.in/government/coronavirus-pandemic-autocracy [Accessed 5 May 2020].

[9]Cowper Andy. “Slippery Language and Defensive Politics Try to Hide the Real Problems,” The BMJ Opinion, 2020. https://blogs.bmj.com/bmj/2020/04/30/andy-cowper-slippery-language-and-defensive-politics-try-to-hide-the-real-problems/ [Accessed 4 May 2020].

[10]Shriver, L. I have Herd Immunity, 2020.  https://www.spectator.co.uk/article/I-have-herd-immunity [Accessed 5 May 2020].

[11] Baldwin, Peter. Disease and Democracy. (Berkley and Los Angeles: University of California Press, 2005).p 3

[12] Sontag, Susan. AIDS and its Metaphors. (Farrar, Straus and Giroux: New York, 1989), p10.

[13]Louw, Marcus. 63 000 TB Deaths in SA in 2018, 2019. https://www.spotlightnsp.co.za/2019/10/18/63-000-tb-deaths-in-sa-in-2018/ [Accessed 3 May 2020].

[14]Avert. HIV and AIDS in South Africa, 2020. https://www.avert.org/professionals/hiv-around-world/sub-saharan-africa/south-africa [Accessed 5 May 2020].

[15]The Western Cape premier suggested that flags should fly at half-mast in honour of people who have died from COVID 19.

[16] The Economist. Smokers Seem Less Likely Than Non-Smokers to Fall Ill with Covid-19, 2020. https://www.economist.com/science-and-technology/2020/05/02/smokers-seem-less-likely-than-non-smokers-to-fall-ill-with-covid-19  [Accessed 3 May 2020].

[17] Sontag, Susan. Regarding the Pain of Others. (New York: Picador, 2003), p7.

[18] Sontag, Susan. Regarding the Pain of Others. (New York: Picador, 2003), p101.

[19] Singh, Kaveel. Tobacco Ban: Our Only Interest is Our People’s Health, Says Ramaphosa, 5 May 2020.  https://m.news24.com/SouthAfrica/News/tobacco-ban-our-only-interest-is-our-peoples-health-says-ramaphosa-20200505 [Accessed 5 May 2020].

[20] Professor Balthazar. Is This Truly Necessary? 5 May 2020. https://www.dailymaverick.co.za/opinionista/2020-05-05-is-it-truly-necessary/ [Accessed 5 May 2020].

[21]Hattersley, Giles. The Judi Dench Interview: “Retirement? Wash Out Your Mouth” 4 May 2020. https://www.vogue.co.uk/news/article/judi-dench-vogue-interview [Accessed 5 May 2020].

[22]Bonneux, Luc and Van Damme, Wim. “An Iatrogenic Pandemic of Panic,” BMJ, 332:786 (2006).

[23]Branswell, Helen. What Happened to Bird Flu? How a Major Threat to Human Health Faded From View. 13 February 2019.  https://www.statnews.com/2019/02/13/bird-flu-mutations-outlook/ [Accessed 4 May 2020].

[24] Nabarro, David. Get Ahead of Covid-19 NOW! 22 March 2020. https://www.4sd.info/covid-19-narratives/narrative-eight/ [Accessed 4 May 2020].

[25]Wayland, Michael. Bill Gates Calls Coronavirus Pandemic a “Nightmare Scenario,” But Predicts Lower Death Toll Than Trump. 5 April 2020. https://www.cnbc.com/2020/04/05/bill-gates-coronavirus-pandemic-a-nightmare-scenario.html [Accessed 5 May 2020].

[26]Medical Brief: Africa’s Medical Media Digest. Debates Rage Over “Severely Flawed Imperial Study Sparked UK Lockdown. 1 April 2020. That https://www.medicalbrief.co.za/archives/debate-rages-over-severely-flawed-imperial-study-that-sparked-the-uk-lockdown/ [Accessed 3 May 2020].

[27]Crewe, Mary. “AIDS, Democracy and the University,” Unpublished address. (Pretoria: University of Pretoria, 2004).

[28] Sharaitmadari, David.“Invisible Mugger”: How Boris Johnson’s Language Hints at His Thinking. 27 April 2020. https://www.theguardian.com/politics/2020/apr/27/muggers-and-invisible-enemies-how-boris-johnsons-metaphors-reveals-his-thinking. [Accessed 5 May 2020].

[29] Erasmus, Des. Radical Economic Transformation Best for SA Post-Covid-19, Says Ramaphosa. 6 May 2020. https://city-press.news24.com/News/radical-economic-transformation-best-for-sa-post-covid-19-says-ramaphosa-20200506 [Accessed 6 May 2020].

[30]Crewe, Mary. AIDS, Democracy and the University. 2006. Unpublished address.

[31]Sontag, Susan. Regarding the Pain of Others. (New York: Picador, 2003), p18.

[32]Camilleri, Andrea. Rounding the Mark. (London: Picador, 2006), p.111.

[33]Said, Edward. The World, the Text and the Critic. (Cambridge: Harvard University Press, 1983), p. 28.

Just LeadersCSA&G

Reflections on stigma, HIV and COVID-19

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by Chris Joubert

As someone who works in HIV testing services, I have heard a lot of misconceptions about HIV. This misinformation ranges from the origins of HIV, to how it’s spread and treated. It wasn’t surprising to see similar trends with the Covid-19 pandemic.

In these times, information is more accessible and therefore spreads very quickly. This, like everything else, has its pros and cons. The cons being that it’s very easy to spread misinformation. Fortunately, on the pro side it is also possible to spread the truth. By being able to quickly relay information on a global scale, world leaders can share strategies for dealing with epidemics and pandemics. Scientists can share data to help give a clear picture and to contain the virus so that it does not keep spreading. Moreover, they can communicate with other scientists, with the objective of finding a vaccine and/or cure for this pandemic.

The downside however is that misinformation can also be relayed with great speed. When HIV first showed up in the 1980’s it was known as GRID (gay-related immune deficiency). This was because many of the people experiencing the symptoms of the virus were homosexual men. The reason behind the origins of the virus soon became “clear” to the general public: GRID is a biological weapon created by the government to eliminate gay people. Naturally there were more and more confirmed cases who were not gay men. We learned that HIV spreads from person to person through blood, breast feeding and unprotected sex (regardless of your sexual orientation).

Many years later the idea of the virus being a man-made bioweapon is still common:  some people still believe that the targets of this bioweapon are gay men, others believe that it was created to kill black people. Their reasoning behind these beliefs are that gay men and black people seem to be those who are mostly affected by HIV.

Similarly, the theme of genocide has shown up with Covid-19. Shortly before the lockdown I was in a taxi when the driver asked me what I think about the virus. I gave the very generic answer of “it’s crazy”. Soon after he started speaking about a conspiracy: we shouldn’t worry because the virus was made by the Chinese to destroy America and Europe. Admittedly I was intrigued by this conclusion and wanted to know more. The driver went on to say that the Chinese created the virus and have a cure already. They are simply waiting for other countries to collapse before selling it.

Bill Gates has also been blamed for Covid-19 as he’d mentioned in 2015 that a pandemic like this could happen and that the world’s health care systems needed drastic improvement. As many point out, this was fair comment, while others believed he was in some way behind the creation and spread of Covid-19.

In a way I do understand conspiracy theories. They may sound a bit far-fetched but the need to believe them makes sense. For many people it’s much scarier knowing that some things are random and are not in our control. As inhumanly cruel as it would be for people to destroy each other by means of a bioweapon, there’s a comfort in knowing that we (or at least someone!) is in control.

Control is also at the heart of stigma, the negative actions and attitudes towards those who are infected or pass on the virus. The attitudes and actions are a way of isolating and punishing those we dislike or don’t trust.

When I was in primary school, I remember a group of boys saying you only get HIV from “sleeping with a black girl … who would ever want to do that anyway”? Similarly, in the 80’s and 90’s many people who found out that they were HIV positive responded by saying “but I’m not gay”.

These misconceptions about HIV created an increase in infections, because they allowed people to believe they did not belong to a “risk” group. They also led to the stigmatisation of a lot of people. For the clients I work with as an HIV counsellor, the most challenging aspect of being HIV positive is the fear of how their community will treat them. I am not saying they are not concerned about their health, but usually that comes from a lack of understanding of how antiretroviral therapy (ART) works. Once I explain ART, and where they can access it, the fear of getting sick reduces quite a bit.

The potential stigma from family, friends, current or future partners, health care workers, teachers and the greater community are what my clients see as their biggest challenge. Some have stories of how family members or people they know are mistreated once their HIV status is revealed.

When it comes to Covid-19 some people once again need a group to “brand” as the infected. Even though South Africa’s patient zero was a man who had recently travelled to Italy, and most of our first cases came from people who had recently travelled to Europe, Chinese people, or people assumed to be from Chinese origins, were the first to be stigmatized. Some even went as far as calling it the “Chinese flu”. And many people around me said that it would only really affect elderly people. But those who are infected and those who unfortunately have passed away from Covid-19 are not exclusively elderly Chinese people!

The problem with this stigmatisation is that not only are certain groups of people horribly mistreated, but that it also puts everyone at a much higher risk of exposure because they feel invulnerable.

As with HIV, when you believe that only certain groups have the virus and will be the cause of your infection, your mistreatment or avoidance of them doesn’t make you any safer. The opposite belief, that anyone could have it, will be the thing that keeps you safer. If you accept that anyone could have HIV, you’ll be more likely to take precautions by testing, being aware of your status and your partner(s)’ status and ensuring you use protection.

Covid-19 is no different: distancing yourself only from certain groups of people helps no one. Our country, like many others, encouraged social distancing and later went into a nation-wide lockdown. The belief that only specific groups of people are at risk and that by distancing yourself from these specific groups of people you will be fine, is extremely dangerous to one’s self and ones’ surroundings.

I will confess to having made the same mistake of stigmatising both HIV and Covid-19. Before my time with the CSA&G I had a lot of misconceptions about HIV. Thankfully, during the Future Leaders at Work volunteer trainings, I learned about how HIV works and realised the dangers of being misinformed, and the risks of not learning from the correct sources. And with Covid-19 I wanted to believe that it wouldn’t reach South Africa or if it did that it would be contained before something as drastic as a nation-wide lockdown had to happen. Unfortunately, that was not the case.

Clarity on prevention and treatment of both HIV and Covid-19 is imperative. Being HIV positive, your immune system is compromised and it’s vital that one does what one can to take care of one’s health. HIV has been plagued with false remedies: raping a child, sex with a virgin, fake cures. ART is still the best way to help fight HIV and one needs to get it from reliable places such as hospitals, clinics and pharmacies, and one must adhere to the treatment.

During this Covid-19 pandemic it’s important to stay up to date with prevention and treatment options. Avoid information that is passed on through instant messaging. If one does receive information, make sure to confirm it with a reliable source such as the WHO (World Health Organisation). For now, it is vital to stay at home. Leave home only when absolutely needed, like for essential goods and services. Furthermore, regularly wash your hands with soap for 20 seconds.

There are of course pitfalls when it comes to this. Adherence to ART has been difficult for many people due to social and economic restraints. It’s hard to adhere when ART is not in stock at your clinic or when you are forced to hide that you are on treatment. ART also requires you to eat healthily and regularly, which is a challenge for many who simply can’t afford to do so.

In relation to Covid-19, staying home is difficult to do when people are homeless. Additionally, the country has high levels of domestic abuse and for some being away from home is a safer option. Some communities like informal settlements don’t allow for social distancing because they are densely populated. A shack made from corrugated metal gets inhumanly hot during the day, sometimes as hot as 40-50 degrees, and people are forced to get out.

In conclusion, I do understand that this lockdown is difficult for some people. In many ways it has shone a light on problems we had long before Covid-19 came to South Africa. Consequently, the government and other institutions will be forced to address these challenges during and long after the pandemic. However, staying informed and avoiding stigmatizing and spreading misinformation are things we can all do.

References

Altman, L. K. (1982, May 11). NEW HOMOSEXUAL DISORDER WORRIES HEALTH OFFICIALS. New York Times.

Coronavirus disease (COVID-19) Pandemic. (n.d.). Retrieved from World Health Organisation : https://www.who.int/emergencies/diseases/novel-coronavirus-2019

Gates, B. (2015). Ideas worth spreading. The next outbreak? We’re not ready for? TED2015.

Zanetti, S. (2020, March). Coronavirus – South Africa LOCKDOWN: What they didn’t tell you. The Digital Rainmaker with Simone Zanetti.

 

CSA&GCSA&G

Covid-19, HIV and me

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by Dipontseng Kheo, Professional Nurse, CSA&G

When the news of Covid-19 came I panicked and feared for my loved ones who recently moved to China.

And when the first case was confirmed in South Africa, as a Professional Nurse working at the CSA&G mainly with HIV testing, I started getting calls and messages. From students, relatives and friends, about how this would affect them since they were living with HIV. I could sense fear, panic and stress. I did not know much about Covid-19 and I started reading more. It was said that individuals who were on treatment, and were stable, would be seen as low risk. This helped to put the people I was communicating with at ease because they were on treatment and complying well.

In my opinion, and looking at the trends of how it affects individuals who are older and individuals with underlying medical conditions like diabetes and heart disease, I feel individuals who are on treatment and stable need not panic.

My advice for individuals with HIV is the same for everybody else: they should take their medication religiously, avoid stress as this also can lower immunity, maintain social distancing, wash hands frequently, wear a mask to prevent one inhaling air droplets from an infected person, and avoid touching their faces to prevent entry of the virus.

According to the World Health Organisation (WHO), “People living with HIV who have a compromised immune system should be extra cautious to prevent coronavirus infection. These include people with a low CD4 count (<200 copies/cell), a high viral load, or a recent opportunistic infection. This is because your immune system may not be prepared to deal with the virus. We also know that people living with HIV are more vulnerable to respiratory infections when their HIV is not well managed. For this reason it’s very important to be taking your antiretroviral treatment as prescribed – always, but especially during this time”.

There have been some uncertainties about how Covid-19 spreads, like whether it is airborne or not. Over the past few weeks it has been confirmed that you can actually contract it from inhaling droplets of an infected person if you are standing less than one meter away from them. That is where social distancing came about. Weeks before lockdown I witnessed a physical fight between two people at a retail store because one individual touched the other, showing that people don’t always agree on what should be done.

Because I have worked in HIV I have been thinking about the similarities and differences between the two diseases.

Information

The lack of information has caused fear and enormous amount of panic about both HIV and Covid-19 –involving the community and giving information on all social media platforms helps to reduce fear and builds compliance.

Stigma

We saw, when Covid-19 first emerged in South Africa, how people of Asian descent and people who travelled were met with anger and violence. I witnessed a physical fight in a store where an individual was furious because someone of a different race touched her. This was how people with HIV were treated at first; black people and homosexual individuals in particular were treated like dirt and people did not want to live with them.

Biology

Covid-19 is transmitted through droplets (coughing and sneezing) from an infected person and HIV is transmitted through unprotected sex, blood contact and from mother to child. This makes Covid-19 much more contagious than HIV, you can contract Covid-19 just by being in the same space with an infected person if you do not wear necessary protective gear like a mask. It is harder to contract HIV because you need more intimate contact, like unprotected sexual intercourse.

Both HIV and Covid-19 can be asymptomatic in some people, especially at first. And in the acute stage (just after the person has been infected) both HIV and Covid-19 can present with flu-like symptoms.

What have I learned from Covid-19 and HIV so far?

  • No human being (and no race) is immune from contracting these viruses if prevention measures are not taken.
  • Providing and involving the community with information helps to reduce or stop the spread of these viruses.
  • Fake news creates unnecessary panic.
  • Scammers always take advantage of any epidemic e.g. they impersonate health care workers, or they push fake cures.

In conclusion I feel that while HIV has taken lives over many years, Covid-19 has taken lives across the world in a very short space of time. Only time will tell what the impact of this will be.

Bibliography

www.who.int

www.cdc.gov

CSA&GCSA&G

Theorising in the thrall of a pandemic

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by Pierre Brouard

Is it possible to have theory in an epidemic? Paula Treichler asked in the early years of AIDS.

In an essay, AIDS, Homophobia, and Biomedical Discourse: An Epidemic of Signification, Treichler argued that “AIDS is not merely an invented label, provided to us by science and scientific naming practices, for a clear-cut disease entity caused by a virus. Rather, the very nature of AIDS is constructed through language and in particular through the discourses of medicine and science; this construction is ‘true’ or ‘real’ only in certain specific ways – for example, insofar as it successfully guides research or facilitates clinical control over the illness.”

Not only was Treichler alerting us to the power of language to frame disease responses, she is suggesting that the words we use to name diseases are themselves reliant on specific social, political, cultural and global moments: through the naming we “make” and “remake” the disease, we “construct” its meaning and our response to it.

Her question about theory was, as I see it, both academic and moral. It is a valid academic duty because it is necessary to think even when we are held in thrall to a new disease – how we think can affect how we respond in the midst of the drama and panic.

And it is moral because there is a suggestion, even now as we deal with Covid-19, that to theorise is to be frivolous, an unnecessary, and even dangerous, displacement activity when so many systems have to be set up and lives in peril saved.

Someone else who brought theory to AIDS was Susan Sontag. As a 1989 review of her book AIDS and its Metaphors by Paul Robinson in the New York Times notes[1], “Susan Sontag’s purpose in ‘AIDS and its Metaphors’ is to show how the way we talk and think about AIDS makes the disease even worse than it actually is. The metaphorical packaging of AIDS, she argues, increases the suffering of the afflicted while creating unneeded anxiety among the population at large.”

Yes Covid-19 is contagious in ways which HIV is not, but it is worth asking if our response so far has managed or exacerbated the epidemic of anxiety we are now seeing, and enabled agency in individuals, families, communities and countries.

Sontag was building on her earlier work, Illness as Metaphor, in which she noted how language could distort perceptions of diseases and, in some instances, prevent patients from acting rationally. With AIDS she saw how certain metaphors, invoked in describing the disease, were employed with varying effects.

One metaphor was the botanical or zoological one: the disease has stages (from being infected with HIV to having “full blown AIDS”), the stages have a biological inevitability (one will die). As Robinson notes, “it is an invitation to despair, causing much misery in its own right and also diverting victims from a sensible medical attitude toward their condition.”

Sontag was trying here to combat some of the fatalism which can come from notions of inevitability. If the disease progresses in ways which seem unstoppable, or indeed if a country is seen to go through “stages” (a virus arrives and spreads, takes hold, picks off the weak and the elderly, then containment and testing follow, resulting in a situation where hospitals struggle to deal with the numbers, ending perhaps with “herd” immunity), a sense of anxiety and panic is manifest, and may even be created.

Other scholars have written about the challenges (and to be fair, opportunities) of military metaphors (we are said to be waging a “war” against the virus). When we use these metaphors of course we can talk about casualties in casual ways (Gauteng was said to be “leading the pack” in Covid-19 infections, according to a recent news report), about collateral damage in dispassionate terms, and even view those with the virus as the enemy, to be managed in ways which deny civil liberties and some key human rights.

And words which incite fear, words like “dread” and “terror” and “horror” are used quite casually in news stories. Recently our minister of health sought to challenge complacency about our relatively low number of (known) infections, warning of what was to come ahead of the upcoming flu season.

“This will flood our hospitals and clinics and create a fertile ground for the coronavirus to spread or to be masked in its presentation. This means with this small growth in numbers we may be experiencing the calm before the devastating storm. We need to be aware that there may not be many further warnings before the pounding descends…”

The words “devastating, pounding, flood, fertile ground” are profoundly emotive. Do they create panic, do they help us to feel ready, or do they induce further helplessness? Their invocation of natural disasters, acts of God if you like, carry the weight of Old Testament predictions of doom.

A second metaphor Sontag explored was the idea of AIDS as a ”plague” (in contrast to an ”epidemic,” the term she preferred).

In her view, virus as plague invoked questions of punishment, not only of the sick person but society at large. In the case of HIV, the punishment was for the moral “weakness” of those infected (not surprising since most of the early known infections were in socially marginalised gay men, sex workers and drug users), and perhaps even a sign of moral “decay” in the broader society. Many conservative religious leaders saw AIDS as God’s punishment for societal ills, including anything that strayed from the heternorm, abortion, contraception, etc.

In South Africa we have already seen examples of how communities have rounded on those identified with Covid-19, wishing to drive them out in Salem-like witch hunts. We have also seen questions of blaming and othering. Mark Gevisser, in a recent New York Times piece, speaks of how black South Africans have called this new virus a “white-man’s disease”; callers to radio stations say “white people are obeying the lockdown but not black South Africans”, implying greater moral and patriotic fibre in the former community.

Like the biological stage metaphor, the plague metaphor contributes to the aura of inevitability: ”The plague metaphor is an essential vehicle of the most pessimistic reading of the epidemiological prospects. From classic fiction to the latest journalism, the standard plague story is of inexorability, inescapability,” says Robinson.

The pessimism evident in parts of South Africa, some of the languaging in news reports here and beyond our shores (references to a “deadly” disease or “killer bug”), and the awareness that it is poorer and marginalised South Africans who are likely to be most at risk, all may lead to feelings of inevitability, and fatalism. Fatalism which can be helpful – as a coping mechanism it is a way of avoiding emotional overload – or a hindrance – in some instances it can lead to behaviour which disregards the risks to self and other.

Contrary to the depictions of some of her contemporaries, Sontag challenged the idea that AIDS was dehumanizing or degrading, even though early images of people with HIV were of men in their prime looking haggard and disfigured. We could debate this, because it is awful to imagine the inner anguish of some of the early HIV patients, but what is interesting, in the context of Covid-19, is our current media interest in images and stories which convey the idea that the social body has become degraded. Desperate patients on ventilators, field hospitals which look efficient but are often quite basic, stories of cruise ship holidaymakers trapped in their cabins as their ship sails ineffectually from port to port, awaiting permission to land, tell a story of a globe gone bad.

Of course, as Sontag said, ”one cannot think without metaphors,” so we may ask which metaphors are useful, or problematic, or at least we should be open to seeing how our metaphors may hinder or help our response. Metaphors can be well or poorly chosen. They would be poorly chosen if they misrepresented the disease, contributed to its victims’ pain or lowered the threshold for risk behaviour. They may be well chosen if they tell a story which neither diminishes individuals with a “feared” virus nor engenders panic, anxiety, helplessness and “anti-social” behaviour.

This article was first published on Gender Justice

[1] https://www.nytimes.com/1989/01/22/books/booksspecial/aids-and-its-metaphors.html

CSA&GCSA&G

Black Queer Visibility: Finding Simon | 17 July to 9 August 2019

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The Simon Nkoli Collective is a partnership with the Dean’s Office – Faculty of Humanities, the Centre of Sexualities, AIDS and Gender (CSA&G), the Centre for Human Rights (CHR), and the Sociology Department. The Collective aim is to use this exhibition to open debates on transformation, social justice and ideas of memory 25 years into democracy.  Moreover, the exhibition is also a celebration of the Faculty of Humanities Centenary through which Simon Nkoli’s memory is evoked as a site for reflecting on Black queer resilience. The desire to inhabit the past through Simon’s journey is to  map this existence within the contradictions of (in)equality.

Why Simon: The aim is to provide an interesting and engaging introduction to the history of LGBTIQ activism rooted in Black narratives. In the excavation of the earlier narratives of black queer visibility it is difficult to overlook the much-documented life of Simon. It is undeniable that he championed many efforts. When Simon Nkoli’s  memory is revisited, three images are often portrayed: his anti-apartheid, HIV/AIDS, and LGBTI activism. Some argue that he was an internationalist. Nonetheless,  Nkoli remains one of the prominent internationally celebrated South African black queers.

The photographic exhibition profiles a series of thirty images, eleven awards, one video installations and a kanga designed by Kenyan visual artist Kawira Mwirichia. The nature of the installation requires minimal narration with the material intended to solicit the participatory presence of a spectator. Visitors will absorb, critically analyse and construct for themselves the Simon they prefer.

 

Dates: 17 July to 9 August 2019

Viewing times: 9:00 to 16:00

Venue: New Student Gallery, Javett Art Centre, UP Hatfield Campus

Queries: simonnkolicollective@gmail.com

 

Nkoli poster

 

deadly medicineUSHMM

Reflections on the Deadly Medicine, Creating the Master Race Seminar: 20 September

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What follows below are reflections of the second seminar in the series of seminars that were hosted as part of the Deadly Medicine exhibition at UP. [ed.]

Text by: Pierre Brouard

DM 25 Sept 2018

Dr Rory du Plesis, Attorney Sasha Stevenson, Dr Tlaleng Mofokeng & Prof Catherine Burns

First do no harm, medics are exhorted. Yet history tells another, more complex, story.

Rory du Plessis of the Department of Visual Arts at UP started this engrossing seminar by exploring depictions, visual and textual, of two black women who were inmates at the Grahamstown “Lunatic Asylum” in the late 1800s. “How do we humanise photographic portraits, to bring into view an understanding of patients as individual subjects”? he asked. The two women had been declared insane – Boitumelo had “claimed the mealie fields as her own” and Vuyelwa was a victim of “homelessness, poverty and loneliness”. Rory noted that they were deemed by the authorities as “being unable to cope with civilisation” and were examples of “cultural and physical degeneration”.

Rory spoke movingly of the ways in which the complex subjectivity of Boitumelo and Vuyelwa was reduced to a “mugshot” of abjection, thus debasing them, in contrast to case books of white patients, which to some extent filled in the missing pieces of their lives, a partial act of “resurrection”. The texts in the casebooks allowed those described to “explode into subjectivity and personhood”, even while archival material is itself always incomplete.

For me, the role of the psychiatric professional was raised in this paper: in the execution of their duties, and in the ways in which they depicted their patients, were they guilty of a form of deadly medicine, reducing their patients’ humanity? Similar questions, over a 100 years later, arose at a recent psychology congress I attended, where we were challenged to think about what an “African” psychology could look like. In a time of land hunger, poverty and disconnection, perhaps we need to ask where the mental unwellness lies; in the individual, in the system that produces their distress, or in the discipline which labels and categorises in ways which are sometimes decontextualized?

Tlaleng Mofokeng, a medic and activist for sexual and reproductive justice, began her paper by drawing on the story of Henriette Lacks, an African-American woman whose cancer cells are the source of one of the most important cell lines in medical research, to outline one of her major theses, that gender and racial biases in medicine are well documented. Henrietta’s cells were taken from a tumour biopsied during her treatment for cervical cancer in 1951. No consent was obtained to culture her cells, nor were she or her family compensated for their extraction or use. As a black women, she was an object, not a subject.

Many examples of sexism, racism and objectification were linked by Tlaleng: gynaecological experiments performed on African American slaves; Saartjie Baartman’s treatment as an object of cruel humiliation; and black women in apartheid subjected to reproductive control as an act of racist anxiety and hatred.

Even in post-apartheid South Africa there are challenges: the role of Depo Provera, used mostly by black women, is questionable; and the agency of many black women was limited by a health system which both coerced them into HIV tests as a requirement of ante-natal care, and at the same time denied them ARVs which could save them and protect their children.

When teaching slides of sexual infections are mostly of black genitalia, poor trans youth self medicate to find some congruence between gender identity and appearance, and women still die of abortion-related complications because of state and practitioner ambivalence, we need to ask tough questions about society’s views on sexuality in general, and that of black people in particular.

Tlaleng was at pains to point out that systems of oppression are intersectional and that race and gender need to be seen through the lenses of class, ability, sexual orientation and gender identity.

Health professionals may elide these complexities, or are complicit in acts of omission or commission which limit women’s rights, produce research which is decontextualised, allow global funders to limit funds for abortion work, or develop curricula which reflect colonial notions.

Tlaleng thus made a compelling case for a form of contemporary “deadly medicine”. Yes there are systemic and structural hangovers from apartheid, but in current-day South Africa we still shame and police black women’s bodies and label and shame sexual and gender minorities. We have to look forward with imagination, she argued, holding in mind that women are navigating these intersections on a daily basis in a society steeped in patriarchy.

Catherine Burns of UP challenged us to think of the possibilities of medicine beyond binary forms of thinking; medicine does not have to be either liberatory or “poisonous”. How do we break down the split between traditional medicine and “bio” medicine? What do we do when good medicine comes out of unethical work?

The work of J Marion Sims on slave women, for example, helped to educate a generation of gynaecologists who came to work in South Africa, many of them good practitioners. In her work in the Medical Humanities, and as a historian, Catherine has been able to explore histories of medics who were complicit in acts of dubious morality or who stood up for justice: an example of the former was the use of Depo Provera as a tool of control in the apartheid state. And in the 1970s the story of Steve Biko’s brutal torture and death was an example of both. Just as Ivor Lang and others were found to have breached their ethical codes in how they lied for the state’s actions, other medics of conscience brought this to the public awareness, sometimes at great personal cost.

In the early years of HIV forms of denialism (and the relationship between medics and the state) colluded and collided with each other. Thabo Mbeki refused to acknowledge that “a virus could cause a syndrome”, supported by famous denialist and biologist, Peter Duesberg. And despite his cynicism of ARVs, his government sanctioned Virodene research at UP as an “African” cure for HIV. This research grossly flouted accepted ethical practice and the doctors concerned were dismissed by UP.

Finally, Section 27 lawyer Sasha Stevenson, using the Life Esidimeni tragedy as illustrative, spoke powerfully of how the law can be used to realise health rights, with legal advocacy and activism being enabled by South Africa’s powerful constitution.

Referencing the Treatment Action Campaign’s legal activism around PMCTC and the provision of ARVs to all who needed it, Sasha illustrated how mobilisation of affected communities was a tool to challenge abuses of political (and medical) power by those in authority. The fact that these abuses occurred in the post-apartheid state is depressing, and a sign that power needs always to be held to account, as was even more powerfully illustrated by the Life Esidimeni matter.

And this was made possible by coalitions of psychiatrists, psychologists, mental health NGOs and the families of those affected, who came together to challenge the state’s foot dragging, indifference,  bloody mindedness and callousness. Ultimately the findings of the Health Ombudsman and the subsequent arbitration under retired former Deputy Chief Justice Dikgang Moseneke were scathing about the state’s actions and made provision for significant redress and the restoration of dignity to the families of those who died.

Ultimately, we are forced to ask whether Life Esidimeni shows we still debase and dehumanise the vulnerable in South Africa; whether health system inequalities are a form of violence; who classifies as human; and how we all have a role to play in ensuring medicine is not deadly but democratic.

CSA&GCSA&G

Should people living with HIV assume the main responsibility for being open about HIV?

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by Pierre Brouard and Rob Hamilton

In a recent posting on Facebook, an HIV educator living with HIV was highly critical of gay men who are HIV positive, yet who say on gay dating and hook-up sites that they are “HIV negative on PrEP”.  He called them out for “lying” about their status, arguing that being HIV negative on PrEP is not equivalent to having being HIV positive and having an undetectable viral load on ART.

He suggested that making a claim like this in effect denied the other party the right to make an informed decision about whether or not to have sex with the person who was living with HIV, because they “would not have sex with them if they knew they were HIV positive”. Yet he admitted that a person living with HIV who takes antiretroviral treatment as prescribed and has achieved suppression of the virus in their body is safer to have sex with than someone who does not know their current HIV status.

He tacitly acknowledged that the prospect of having sex with an HIV-positive individual was still daunting for some HIV-negative people, because prejudice and stigma persisted. He claimed that stigma could be “stopped” if people living with HIV didn’t “present false information just to get a lay”.

We respect these views, and they may indeed be popular, but suggest they are an interesting starting point for some debates and provocations, which we set out below.

Why do we lie?

As two gay men concerned about HIV – one of whom is living with HIV and has an undetectable viral load, and one of whom is to the best of his knowledge still HIV negative – we thought it useful to look more closely at the meanings and unintended implications of this Facebook post. Firstly, we agree that deliberately misleading someone with a conscious intention to cause them harm is indefensible.

And in an ideal world we would all be honest with each other about everything (including our HIV status). But the truth is that we don’t actually live in an ideal world: the truth is often unpalatable, or it offends some people, and it alienates others. In some circumstances, telling others the truth – such as disclosing one’s HIV-positive status online – elicits a negative response, which can range anywhere from the other person refusing to chat further and blocking all future messages, to harsh judgements and vicious name-calling, through to various unpleasant threats, and in some cases, it can even culminate in physical assault or much worse than that.

While some might argue that only minor consequences follow truth-telling on a hook-up site, any disclosure of one’s HIV-positive status to a complete stranger on an internet site involves an enormous leap of faith, and, in truth, means making oneself vulnerable and taking a major risk which is seldom appreciated or respected by the recipient of the message. In fact, we have seen that it far too often leads to summary and hurtful rejection: the conversation is ended by the other person with no explanation given, and the person who has disclosed their HIV-positive status is blocked from having any further communication with them.

Stigma management

We argue that gay men who are living with HIV might adopt an “HIV negative on PrEP” identity as a self- preservation strategy. Yes, they are not telling the full truth – an act which some might see as lacking integrity – but they are attempting to protect their public identities, and to maintain the integrity of their self-image: a self image which may have taken a battering as a result of relentless hostility from both straight and gay society over nearly four decades of the HIV epidemic. To say that one is “HIV negative on PrEP” is  a less risky way of communicating that one cannot infect another person with HIV, even via unprotected sex , which is true for a person living with HIV who makes sure that they stay “undetectable on ART”. The words might differ, but the effective meaning is the same. Perhaps those of us who are HIV negative need to ask ourselves: why and in what ways we contribute to a society which still stigmatises people with HIV?

Internalised stigma

Furthermore, when people living with HIV express views that imply that people living with HIV should be held to a higher moral standard than others, we argue that this is actually a form of internalised stigma. To require gay men living with HIV to be more consistently honest than other gay men suggests having bought into the idea that gay men living with HIV are in some sense ‘damaged’ goods, and, therefore, that they should be held to a higher set of standards than other gay men!

This is of course unremarkable, since it is inevitable that someone with a “socially spoiled” identity will experience internalised stigma to some degree. We need to remember too that very few of us – whether gay men or lesbians – ever completely divest ourselves of the homophobic beliefs and attitudes that surrounded us and that we all grew up with. This can lead to many forms of self-loathing, self-justification and self-promotion. We think here of ideas of queer fabulosity and exceptionalism as two common examples of this.

Or the comment so often made in conversations between two gay men – and, if we are honest, we need to admit that most of us have indulged in such stereotyping at one time or another: “Well, you know, I’m not like other gay men. They are so promiscuous / shallow / just after sex / not interested in a real relationship / unreliable / judgemental / camp / two faced / materialistic / unattractive / pretentious / etc” (fill in the applicable negative description yourself).

Moral certainty?

Do gay men living with HIV owe their potential partners the “complete truth” about themselves and their HIV status? In an ideal world we would all tell the truth all the time. But in an epidemic which has seen people living with HIV betrayed, attacked and excluded, we suggest that strategies for psychic self-protection, like a claim of being HIV negative on PrEP, need to be understood in more nuanced ways and perhaps judged less harshly. Humans lie all the time, and not just to “get a lay”.

We acknowledge that some might find our ideas controversial, and that they could reinforce the irrational fear in some quarters that people living with HIV are more “unreliable” than others, or that they seek to “deliberately infect” their sexual partners. But what we are trying to do is to unravel apparent moral certainties, to embrace complexity, and to understand these so-called acts of “lying” a little differently.

PrEP as a social signifier

Finally, as PrEP rolls out and it is absorbed into the social imagination and adopted as a “folk” understanding of biomedicine, it will be used increasingly as a social signifier of being HIV negative, of being HIV anxious, of being HIV careful, and perhaps even of being willing to take sexual and other risks. This is normal, and we believe that claims of being HIV negative on PrEP  are not to be railed against and vehemently condemned, but that they need to be understood as yet another example of how humans adapt to new scientific developments and fresh knowledge.

Already tensions are on the rise in queer communities, tensions between the undetectable = uninfectious (U=U) and the HIV-negative-on-PrEP rhetoric. At the recent International AIDS conference in Amsterdam, Nic Holas of the Australian online organisation the Institute of Many pointed to the tension between these two approaches. Some PrEP users remained fearful of and stigmatised people living with HIV, he suggested. They prioritised their new found freedom but ignored the fact that it had only been possible to develop PrEP “after people with AIDS put their bodies on the line”, adding that “in the age of PrEP, people living with HIV must not shy away from taking up space and ensuring [their] voices are heard. It is not enough to end the HIV epidemic with PrEP and leave us isolated, criminalised and stigmatised.”

So what’s the answer?

To reduce stigma, we argue, it is important to acknowledge that stigma is in all of us, and that it might well be wired into the human condition, and be a common feature of all human societies over time.

We need better social science and more comprehensive interventions, which dig down into the subtle and intractable nuances of “othering”. Expecting people living with HIV to do all the “heavy lifting” on online hook-up sites is, we believe, both unfair and unreasonable, and does them a real disservice.

Finally, we need to acknowledge that new tensions inevitably develop as biomedicine evolves. It might be more helpful in a case like this to not respond so quickly, but to rather apply our social science lenses and try to understand what these emerging social meanings and new identities are actually all about.

 

Downloads

CSA&G

Adherence Resource Pack

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Education: the forgotten side of prevention

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Pep-talk too far

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UNDP Compendium

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UNDP Guide

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Third Degree

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BucklingCSA&G

Buckling

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HCI Report

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