/ 8 July 2020

Eusebius McKaiser: A witness to Covid-19 stigma

(Delwyn Verasamy/M&G)

In Witness to AIDS, Edwin Cameron explores the roles of fear, stigma and shame in setting us back in the fight against HIV/Aids. He does so using many stories. One of the most memorable  is of a gardener, called Gladwell in the book for purposes of the story. Gladwell was chronically ill — he had tuberculosis — and his health deteriorated rapidly. Edwin asked Gladwell once if he had tested for HIV and the gardener answered that he had, and that the result was “clear”.

After returning to his family in Zimbabwe, Gladwell died a few weeks later. There are several unknown facts here, and plenty of ethical minefields. Edwin, characteristically a very careful thinker, grapples with the question of whether he should have — could have — done more to help his friend. Gladwell knew that Edwin was living with HIV, and that he was living well, in large part because he was taking and adhering to his antiretroviral (ARV) treatment. 

But one gets the sense that Edwin didn’t want to be presumptuous about whether Gladwell had been entirely honest about having taken the test. Edwin wonders, belatedly now that Gladwell is dead, whether he could have, without being overbearing and undermining the man’s agency, nudged him to have gone along to his own doctor or to take a test. 

There is a lot here I do not want to explore in this context: power distributions between us; assumptions about truthfulness; how to strike a balance between respect and being helpful, and more. 

But this, and many other stories, entitled Edwin on a deeply personal level —  since his decision was about him only, morally — to disclose his status as a public figure living with HIV in 1999. It was regarded, and in context appropriately so, a monumentally brave decision, given how much stigma was attached to being infected with the virus. 

But Edwin also knew that, although he could face profound and paralysing stigma and ostracism, socially and professionally, that for many people living under conditions of violence — especially black women such as Gugu Dlamini who was stoned and stabbed to death after disclosing her status on a local radio station — it was much worse. Millions of citizens did not have access to treatment, support structures, or the law. 

One of my favourite parts of Witness to AIDS moves from these considerations to also exploring the deadly —  yes deadly —  effects of self-stigma and self-shaming. Quite literally, many people died from being too ashamed of themselves for having HIV. This deep personal shame —  obviously occasioned by, and linked to, societal stigma and shame —  stopped many from testing or from accessing treatment or from adhering to treatment. Shame and stigma remain important obstacles to our dream of living in an HIV-free world. 

Edwin hypothesises, correctly in my view, that one of the drivers of this shame and stigma is that the main way in which HIV is transmitted, is through sexual intercourse. To disclose your status is therefore to reveal that you probably had sex, and that you probably had unprotected sex. [Of course there are other ways you can get the virus, such as through sexual violence.]

But, statistically, if someone says “I have HIV” they are also read and heard as saying “I had sex”. And “I had unprotected sex”. The shaming then creeps in: “OMG, you had sex! Yuk! You’re not even married …”/ “TMI! The thought of you being naked …. eeeuw!”/ “You were a slut!”/ “You were irresponsible!” Never-mind, of course, the deep hypocrisy by many of us who also enjoy sex  —  casually and yes sometimes without protection —  and that despite our own messy lives we often still judge others. That is how a culture of silence, shaming, stigma and self-stigma, takes root. 

Which brings me to Covid-19. Please can we not repeat the HIV story? PLEASE? I was saying to my dad, as well to my friend Karima and my friend Aki, in different conversations, that I have now, sadly, already been “Witness to Covid-19 stigma”. Now that just about all of us know people who are Covid-19 positive, how we respond to that fact is going to be a really important part of the battle against this pandemic and we must learn lessons from HIV. 

I have seen some people already being assumed to have been reckless when they test positive. Do not make assumptions and do not judge. It is unhelpful. It discourages testing. It makes it hard for people to disclose their status, to seek medical and psycho-social support, and to reduce the chances of them infecting other people by being able to openly and honestly discuss the implications of their positive status. 

Not everyone who tests positive for Covid-19 was as reckless as the president of Brazil. Not everyone who tests positive for Covid-19 was as irrational and risk-averse as Donald Trump and Boris Johnson. 

One of my best friends, his wife and children all tested positive, and I had almost, at the beginning of the lockdown, teased him for the measures they had taken to protect their family. There is no way in hell their positive test results are proof of recklessness. Some people who test positive might have been reckless. But you cannot assume that to be the case, not least because we are all, including doctors and scientists and public health experts, trying to figure out the complete truth about all the different ways of getting infected. 

Condemnation isn’t always helpful or always justified. I, sort of, think it is okay to experience schadenfreude when you read about the Brazilian leader testing positive, but in our general engagement with one another as citizens of the world besieged by this pandemic, with so many unknown characteristics, let’s prioritise compassion and (accurate) information-sharing over judging someone who tests positive. 

Many of us have lost friends and family to Aids because of shaming and stigma. Covid-19 is hard enough on the body. Let’s not worsen that reality by introducing a moral dimension that simply multiplies the effects of this pandemic needlessly.

Centre love and compassion over hasty assumption and quick judgment.