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

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.

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

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.

 

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