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Reimagining Hope: An Interview With Simon Watney

Simon Watney has an established reputation in the field of HIV/AIDS. In response to the increasingly surreal and ineffective responses to the fact that HIV infections among gay men in wealthy countries are increasing, he has decided that he and his contemporaries need to return to advocacy.
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Simon Watney has a long-established reputation in the field of HIV/AIDS as a writer, founder of numerous charities and not-for-profit companies, educator and service provider. From 1985 to '89, he was the founding chair of the Terrence Higgins Trust's Health Education Group, where he oversaw the development of the trust's pioneering HIV-prevention campaigns. From 1988 to '95 he wrote a respected monthly column on HIV/AIDS issues in Britain's leading gay magazine, Gay Times; in 1990 he was a co-founder of the activist group OutRage.

His principal publications on HIV/AIDS are Policing Desire: Pornography, AIDS and the Media, Practices of Freedom: Selected Writings on HIV/AIDS, and Imagine Hope: AIDS and Gay Identity. He was awarded the 2001 Pink Paper Annual Lifetime Achievement Award, London, for his "long campaigning for lesbian and gay rights and the rights of those affected by HIV and AIDS." Openly HIV-positive, he was a trustee of the charity Crusaid from 2007 to 2010, with a particular interest in questions of AIDS and poverty in the UK. Simon is also a widely published art historian and was a senior lecturer in art history at the University of Westminster.

In response to the increasingly surreal and ineffective responses to the fact that HIV infections among gay men in wealthy countries are increasing, Watney has decided that he and his contemporaries need to return to advocacy.

Mark Adnum: You told me recently that you were "limping cautiously back into the field after years of exhausted collapse." What triggered the exhausted collapse, and what's prompted your tentative return?

Simon Watney: Well, after 20 years of working too hard and without any proper sense of boundaries, my own health finally gave way, and I was hospitalized following my own infection with HIV in March 1997, which I took very badly, having done my best not to get infected, and I also eventually had a big personal meltdown. Like so many others, I'd put the rest of my life "on hold" when I started to get actively involved in the epidemic, and there were many issues from my past which I needed to deal with sooner or later before I could start to move on again. I also had a lot of delayed mourning to do, and I wanted something of my old pre-AIDS life back, and to be involved with other issues that I care about as a historian.

Although I never entirely stopped being involved in AIDS-related work, I now find myself increasingly drawn back by the situation confronting us, as I think are many of my surviving contemporaries from the early years of the epidemic, most of whom have similar stories to tell. On the one hand we are motivated by the appalling rise in new HIV infections amongst young gay men throughout the developed world, but also because so many of us recognize the need to address and share the profound personal consequences of living through a disaster that has been with us now for three long decades.


Adnum: I loved how you pointed out once that the vernacular of the more strident barebackers -- their denigration of condoms, praise of "sex as it was naturally intended" and so on -- is the language of the Vatican. Also, I remember watching TV in the late 1980s and being as dismayed as everyone else to hear doomed African women saying that their men refused condoms because "skin-on-skin" intercourse was a man's nonnegotiable prerogative (a cultural dictate encouraged by Vatican operatives in many African countries, not coincidentally). Now, in 2013, in New York City and such places, that's precisely the language you hear from many on the lunatic fringe of the barebacking brigade, and I think it's all just too surreal for words, particularly when many of them simultaneously profess to be avant-garde gay sexual revolutionaries. What do you think?

Watney: To begin with, I think one has to identify where all this talk is coming from. The claim for some positive "right" to have sex without a condom comes mainly from a vocal minority of voices located in the United States, though it is instantly transmitted around the world via blogs and social media. One such blog boasts the strapline "Your Mother Liked It Bareback," and although this may perhaps be intended to be amusing, I think one needs to point out at once that she probably would not have done so had she known or suspected that her partner was HIV-positive.

Partly there is wishful thinking, as if the epidemic could somehow be magically wished away and we could simply turn the clock back to the 1970s. It has long been misleadingly if well-intentionally claimed by some American charities that "AIDS affects everyone," yet even the most casual perusal of the statistical data available since the widespread introduction of HIV testing from late 1984 onwards demonstrates with the greatest clarity that all along, HIV has had a vastly disproportionate impact on gay men throughout the developed world, and this means that targeted education remains as urgent a priority as ever. Anything that distracts from the message that if you have the slightest doubt about your own or your partner's HIV status, you should use a condom if you are fucking, is to be deplored.

And in any case, try telling your girlfriend, if you're straight, that you have a "natural right" to have unprotected sex, and see where that gets you. Why should some gay men imagine that, unlike anyone else on the planet, they are somehow specially entitled to limitless, risk-free unprotected sex? Yet this is precisely what many gay men are currently arguing, with varying degrees of shrillness. This is grossly insulting to all those who have worked so hard to encourage risk reduction over the course of the past 30 years, to say nothing of the memory of the countless hundreds of thousands of gay men who have died as a direct result of HIV infection. It strikes me that it is extraordinarily selfish and irresponsible to run around blithely talking about the supposedly limitless joys of unprotected fucking. Moreover, the quasi-religious promotion of condom-free fucking by some gay men, all too often presented as if this were somehow "radical" and "edgy," may indeed, I suspect, be directly or indirectly responsible for countless otherwise avoidable new infections. In a way, they are not unlike a new version of the deluded "AIDS denialists" of the late 1980s who willfully denied any connection between HIV and AIDS in the face of all the evidence to the contrary.

The fashionable cry these days that "condoms don't work" flies in the face of all the epidemiological evidence available since the introduction of HIV testing. You cannot possibly explain the rates of incidence and prevalence amongst gay men from 1985 to the late 1990s in any other way than in relation to condom use. Were it not for condoms, the majority of sexually active gay men would already have been infected long ago.

Since nobody else appears to be doing so loudly and clearly, it seems to be up to us older gay men like myself to forcibly point out that the epidemic is here to stay for the foreseeable future. It is not going to go away. And there is no way around this.

Adnum: "Treatment as prevention" is the fad of the moment. But how do you imagine it can work, since it requires identifying a scattershot mob of gay men who are already condom-averse and/or indifferent to HIV, then roping them into an even more sophisticated approach to prevention, and expecting them to adhere to its routines?

Watney: There is a lot of confusion on this point. To begin with, I have always argued that treatment issues and HIV prevention should be regarded as equally important, and not as alternatives.

Taking treatment issues first, I think that getting life-saving drugs to those in need should always be our highest priority. The fact that reducing the viral load of HIV-positive individuals may reduce their potential infectivity is an important but secondary issue, and it should always be noted anyway that the extent of this reduction of infectivity remains the subject of considerable uncertainty. Medications were not introduced to allow men of either status more condom-free sex: They were introduced to save lives. Furthermore, the policy that everyone with HIV should immediately be put onto treatment drugs, regardless of their CD4 count or viral load, strikes me as unethical. As my old friend and esteemed colleague Dr. Joseph Sonnabend has pointed out, there is no precedent outside the criminal justice system where individuals are given drugs for purposes other than their direct benefit.

The second area that concerns me is "pre-exposure prophylaxis," usually known as "PrEP." The theory here is that putting HIV-negative people onto antiretroviral drugs may protect them from the risk of infection. PrEP has been widely and enthusiastically promoted in recent years by some organizations, often accompanied by the claim that condom education has failed, with the implication that PrEP is some kind of semi-magical alternative. But there are enormous problems here. To begin with, the claims for the effectiveness of the only type of PrEP drug currently available have been greatly exaggerated, on the basis of very limited trials, conducted by the very companies which have an enormous vested interest in expanding their market. Like most people, I ardently wish there were indeed some demonstrably effective form of PrEP readily available and affordable for the uninfected, but unfortunately it is simply magical thinking to imagine that Truvada, the current drug on offer, fits the bill.

Nor should we forget that many of the self-proclaimed "community-based" HIV charities busily promoting PrEP are dependent on rafts of money provided by the pharmaceutical sector, for whom they operate as willing glove-puppets, although this is hardly unique to the HIV sector, since so many NGOs these days depend on undisclosed commercial backing.

And I completely agree with you: I fail to comprehend how anyone whose understanding of their relationship to HIV is sadly so scattered that they have difficulty using condoms at the right moment is somehow thought more likely to be able to adhere to the necessary routine of a pill regime, a regime which, for many people, has quite strong and unpleasant physical side effects and which may be required to be sustained over the course of a lifetime. And what, moreover, would be the consequences in terms of later treatment options for those who have been on PrEP and then indeed sadly subsequently get infected? And who is to decide which groups are at greatest risk, to whom PrEP should be made available, and how are such decisions to be made? Should every gay man on Earth not already infected with HIV go on PrEP for life? This is surely crazy thinking.

At the end of the day, it seems to me that many people are naïvely arguing for PrEP as if it were a guaranteed way of directly facilitating supposedly risk-free unprotected sex. But who is to pay for all this? It might make limited sense for employed or otherwise insured Americans, but it would certainly not be available for anybody else. There is thus a real class bias behind such demands, as well as a clear racial dimension, since so many of those in greatest medical need are both poor and black. PrEP is also far beyond the cash-strapped means of more civilized countries with socialized medicine, such as the UK.

Adnum: "Pleasure" and "rights" (the right to not use condoms, the right to donate blood, etc.) seem to be vogue topics at the moment as well. What ever happened to protecting the community rather than catering to the individual?

Watney: Strident demands for PrEP as a limited, let alone a universal, goal strike me as typical of a certain type of selfish individualism which is hardly limited to the United States. Again, I well recall the essentially naïve demands back in the 1980s that gay men should have the "right" to donate blood, as if this were an issue of civil rights and supposedly homophobic discrimination, rather than one of protecting the blood supply. This point was hammered home for me very early on by my early encounters here in England with pioneering members of the Haemophilia Society, who played an important role alongside gay men like myself, and others, in early policy making and advocacy, motivated by the fact that so many British hemophiliacs were infected by blood plasma imported from the U.S.A.

It is clear that one unintended consequence of the eventual achievement of major sociopolitical goals on the part of lesbians and gay men in many countries, in the form of legislation affecting the age of consent, gay marriage and so on, has been a marked weakening of older communitarian gay identities. This has of course also been a consequence of the rise of social media and online dating sites in place of the direct-social face-to-face world of the fast-vanishing gay scenes in cities all around the world.

This seems to me to be a universal downside of life in the 21st century, and there is no reason why gay men and lesbians should be magically immune to the wider forces of fragmentation and social change which are obviously affecting society as a whole. We're all supposed to be happy consumers these days, and this, alas, all too often includes the idea of consuming one another. If the marketplace is the dominant metaphor for thinking about social relations, it follows that people will be increasingly encouraged to think of themselves primarily as entirely free individuals in complete control of all their choices as consumers. This is hardly conducive to thinking about collectively shared responsibilities, whether in relation to HIV or the environment or any other issue you might care to name. Only a few weeks ago a younger friend of mine was actually spat at in a London back room when he got out a condom. Of course we can't turn the clock back, but this is not to say that we have to entirely abandon all those ideas of gay "brotherhood" that my generation forged back in the 1970s, and how we might best promote them today.

It might be added that in many countries, including Britain, the leading "rights-based" LGBT lobbying groups never showed any real interest in the epidemic, since it didn't fit in with their style of squeaky-clean "rainbow coalition" campaigns. At the same time most, though not all, university-based queer studies courses disappeared in a fog of increasingly impenetrable theoretical gobbledygook whilst stridently distancing themselves from what they loftily dismissed as the supposedly "essentialist" vulgarity of so-called "identity politics," and some academics have certainly been in the vanguard of the pro-barebacking lobby.

Looking back, I strongly suspect that both these reactions were, in their different ways, reflections of displaced anxiety generated in response to the epidemic, but that's another story.


Adnum: More word association: "normalization." How can something as disruptive and inscrutable as HIV/AIDS be "normalized"?

Watney: There is nothing "normal" about HIV or AIDS. There was nothing "normal" about the way so many of my friends died, many of whom were younger than me and whom I had idly once imagined would be the younger friends of my own old age. Nor can I assure you is there anything in the least bit "normal" about living with HIV, concerning which the issue of drug-compliance is, for me, at any rate, the least of the issues. Not everyone comes from loving, gay-friendly families. Many battle with shame and guilt. Show me a gay man with HIV, and I'll show you someone who has battled with, or will eventually face, chronic, long-term problems with depression, or worse. There is nothing remotely normal about the awareness that should you stop taking your drugs for very long, you will die a horrible death. The only thing that is "normal" throughout the developed world is the widespread withdrawal of services formerly available to all those with chronic long-term illnesses, which is to say nothing of the shocking state of HIV treatment in so many poorer regions.

However, going back to a period before many of the readers of this discussion were even born, when people with AIDS in the early years of the epidemic were losing their jobs and even being forced out of their homes, when children were turned away from schools, and when barrier-nursing procedures caused immense suffering to the sick and dying and their friends and families, the initial aim of "normalizing" AIDS was thus entirely honorable and was concerned mainly with combating prejudice and discrimination.

Meanwhile, in the here and now, I recently heard a colleague from Zimbabwe asking at a conference if anyone could imagine how a woman from a village in which more than three quarters of the population has already died of AIDS might feel when she is cheerfully informed that the epidemic has now been "normalized"?

Adnum: I always return to Alan Sinfield's great quotation that "we may have passed beyond AIDS, but we have never actually passed through it." The way we're falling so rapidly down the rabbit hole into HIV wonderland, do you think we're ever going to process what happened, much less find a way to stop it from continuing?

Watney: My father was a soldier in the Second World War who died when I was 16. He suffered from lifelong, undiagnosed clinical depression, and one symptom of this was that he was almost incapable of talking about his wartime experience in Italy and elsewhere. If my generation of gay men does not talk about AIDS, we will fail the young as well as ourselves.

Young people need encouragement. They need people who will listen to what they are saying about their feelings, especially negative feelings, that they evidently seem to have difficulty acknowledging and sharing with one another behind all those struggling beards and manly tattoos.

AIDS today is little more than background noise in the lives of young gay men born long after the start of the epidemic, for many of whom I strongly suspect it's almost as if it all never happened. And why should they know any better, since the subject is no longer dealt with in schools? In other words, they have simply been abandoned to their fate, and it strikes me that this is perhaps the single most glaring symptom of ongoing homophobia anywhere in the developed world. If the rates of new infections were taking place in any other social group, I feel sure that there would be riots in the streets protesting the scale of neglect.

I am particularly worried by the casual way in which so many people entering the field of prevention work nowadays often casually speak and write about the supposed "failure" of condom education, the history of which they are usually entirely ignorant. As I pointed out some 20 years ago, the problem is not that condom-based prevention work has failed but that prevention work itself has so often been actively prevented, not least in the United States. It is sometimes erroneously claimed that gay men only took up condoms when we saw large numbers of our friends actually dying, but this is completely untrue in most parts of the world outside America, where the worst mortality rates only kicked in years after the original "safer sex" revolution, which began exactly 30 years ago with the publication of How to Have Sex in an Epidemic in New York City, long before the Internet was even dreamed of.

Throughout my adult life I have been enormously inspired by the courage and creative energy of American LGBT activists, going right back to the origins of the Gay Liberation Front movement in which I participated, and on through the early community-based response to AIDS before the eventual identification of HIV, and the subsequent rise and fall of ACT UP, and so on. One of the greatest ACT UP slogans was "Think Global, Act Local." Nobody from the outside can protect Americans from the consequences of their own paradoxical provincialism, but it is not too late for those in other parts of the world to look back at the extraordinary achievements of the past three decades in the fight against AIDS, from Mexico City to Melbourne by way of Manchester. Everything we know about that history tells us that condoms work, but that condom education needs to be constant and ongoing and appropriate to changing times and circumstances, whatever else may be on the horizon by way of new types of prevention. Some wheels cannot be reinvented too frequently.

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