Interview with Will Nutland

Friday 21 October 2022


NP: Could I start, please, with a broad question. How would you introduce yourself?

WN: Sure. So, I’m Will Nutland and I’ve been involved in activism since I was about 14. And I am the co-founder of an organization called The Love Tank, which is a community interest company. One of The Love Tank’s projects is a project called PrEPster, which is a program of work that was set up almost seven years ago to educate and agitate for PrEP access in England and beyond. I have a doctorate in public health. I’m an honorary assistant professor at the London School of Hygiene Tropical Medicine, which is where I’ve just come from, because I’m teaching right now. And I will probably talk about pre-exposure prophylaxis during this conversation. So, I’m a PrEP user myself and was kind of one of the early pioneers of kind of PrEP use in the UK. That’s probably enough for that.

NP: Absolutely. Again, a broad question to continue: What would you describe as the landmarks, the important moments, if you prefer, in your engagement with HIV/AIDS activism?

WN: So maybe if we start with the present and move backwards, I think that a couple of key points that stand out for me, I think the one right now is the work that me and my colleagues at The Love Tank are doing around facilitating access to sexual health services, including HIV testing, HIV treatment and prevention technologies for people who are in the UK and particularly in London, who have insecure immigration status and data very, very clearly shows that in a place like London, if we look at men who have sex with men, about 50% of diagnoses last year in London amongst MSM [Men who have Sex with Men] were in men who were not born in the UK. And we know that some of the reasons behind that include that lots of those guys or lots of those migrants don’t understand that NHS sexual health services are free, so they’re afraid that they’re going to have to pay for these services. And some of those people are also concerned that if they go into NHS sexual health services they are going to be reported to the Home Office if they don’t have secure immigration status and they are going to get deported. So a lot of my day to day activism right now is trying to educate and support those guys in understanding that they can access PrEP for free on the NHS, regardless of how long they’ve been in the UK and how long they intend to stay in the UK, that they are able to access HIV testing and if they test positive, they are able to access HIV treatment for free and in most cases without having to show any form of identification with some caveats. So that and that’s a really big focus of the work that me and my team are doing right now. The other focus of what I’m doing right now is also looking at the availability of, an access to emerging biomedical HIV prevention technologies, I’ve done a lot of work on access to oral PrEP, but now we are seeing the development of other ways of using PrEP, including injectable PrEP, vaginal rings, long, longer acting forms of PrEP, rectal microbicides, vaginal microbicides. And quite a lot of my current activism is around pushing for proper inclusive clinical studies for these emerging technologies and making sure that those populations of people who are excluded from the oral PrEP trials are included in trial design, trying to ensure that those of us who are actually put those drugs into our bodies are involved in trial design, trial protocols, and that the community advisory boards that are going ahead in most of those trials actually involve those of us who are using PrEP rather than what’s emerged as generally an older white cis gay men living with HIV industry. They quite rightly have a whole set of treatment advocates who are very, very articulate in articulating the needs of people living with HIV for HIV treatment trials. But what’s happened almost by osmosis is that when it comes down to HIV prevention trials, those same HIV treatment activists have tended to take the place around the table for community advocacy. So, I’ve been doing a lot of work for what I call good involvement of people using PrEP in HIV prevention, research and policy and practice. And then if we go back for the last seven years, most of my work has been around helping people to understand the benefits of oral PrEP and also advocating for PrEP to be made available across the UK and then another different parts of the world. So, I’ve been supporting and offering solidarity to HIV prevention activists outside of the UK as well as community activists in the UK. And then if we fire even further back, I used to be head of health promotion at Terrence Higgins Trust until about 13 years ago. And one of the things that I pushed for at THT was to try to change the HIV prevention narratives away from only consistent condom use as the main pillar of HIV prevention. To start to include the emerging options and strategies that we knew were available based upon the data and the evidence that was being generated at the time. So even though this kind of concept of U=U is fairly new, actually, many of us 20 years or more ago were using the emerging evidence about undetectable viral loads of people with HIV on treatment as a way of strategising around our negotiated risk taking as we were around strategic positioning, deciding where to top, top or bottom during anal intercourse without thinking about condoms and talking about issues such as withdrawal, the issues around concurrent STIs. And that was seen 20 years ago as being fairly controversial. Yet a number of us in the States, Europe and places like Australia were really pushing this as an HIV prevention agenda, in part reflecting on what we knew was kind of existing community knowledge and practice around that. And I was involved at that same time instigating the push for the availability of post-exposure prophylaxis. So, PEP in the UK, away from only being available for occupational exposure and making a very clear case that perhaps should be available for sexual exposure as it now is widely in the UK. And then I would say without going too far back, I was involved in HIV activist movements in the early nineties that were a lot less focussed but really pushed on access to HIV treatment for people who were living with HIV, looking at stigma, discrimination around HIV testing. And actually, just to move further forward, I think that’s a crucial thing that I’ve missed is I was also instrumental when I was at THT in pushing and challenging the narrative around HIV testing should only be provided within sexual health clinics by a trained physician. And the early work on normalising home testing or testing by mail or testing that did not happen within a bricks and mortar clinical setting. I’d say those are sort of my key milestones. I was fortunate enough to be in the room at the 1996 Vancouver AIDS Conference when the announcements were made around triple drug combination therapy. I was fortunate in 2010 to be in the conference room where we heard the data around both oral PrEP efficacy amongst MSM and the efficacy of vaginal microbicides amongst cisgender women. So, I think there’s some of those kind of really brilliant milestone moments where I’ve been in the room when it happens, hopefully, hopefully.

NP: And we’ll. When did you join the Terrence Higgins Trust, if I may ask?

WN: So, I joined in 1996. And then and then in 2007, I took a four-month sabbatical. Basically, I was absolutely burnt out. And then I went back for one more year and left in 2009.

NP: But you had already been active in AIDS campaigning, so would you like to tell me about the other organisations or networks of which you were part?

WN: Yeah. So maybe this is again, this is easier to start at the beginning and move into time. So, I enrolled in university in 1987 and at that time I wasn’t clear about my sexuality, although I’d been having sex with men. And that was the time when we were just starting to hear about HIV in a very, very public way. So, my early sexual exploration had the backdrop of kind of the doomsday narratives around HIV amongst men who have sex with men. So, my early sexual exploration was kind of cloaked in the fear and the uncertainty and the anxiety of what this virus was and how it could be transmitted. And then in 1987, when I enrolled at university, when I went to register at the university, they gave every student a leaflet with the new Department of Health’s public awareness campaign, which is called the Don’t Die of Ignorance Campaign. And so, at a time when you might expect a young person to be going to university, having some freedom, exploring their sexuality, all of us were being given a leaflet basically telling us not to have sex and not to have sex with Americans and all these other things that were happening at the time. So, I went through most of my time at university, actually. Unlike most of my peers, I was completely celibate for the three years I was at university. And then towards the end of my studies and my last year at university, I came out and came out in my peer group, not to my family and started getting involved in, in LGBT activism or gay rights activism. And I don’t know how familiar you are with UK politics at that time, but Margaret Thatcher introduced something called Section 28, and so Section 28 was being introduced while I was at university. And you know, the end goal for Margaret Thatcher was that actually Section 28 pushed a lot of us into coming out of the closet because we decided you could not afford to be in the closet when this kind of legislation was being introduced. So, I got involved in queer politics, LGBT politics in my last year of university. I came out and then I was also involved in environmental activism. So, I had done during my first year at university, I’d been involved in direct action against the building of Sizewell B Nuclear Power Station. I’d been involved in the Campaign for Nuclear Disarmament. I was on the periphery of some of the road building protests. And one of the guys who worked in the Environment Centre where I volunteered was a very out gay man. And he started to tell me that one of his lovers just had an AIDS related illness. And I started to realise that for me as a young queer man, I didn’t relate to or engage with some of the narratives around safer sex. I didn’t go on the commercial gay scene because I felt like I didn’t belong [there]. I didn’t have the social or the economic capital to fit in. So, I started, based on my conversations with this environmental gay activist, I started to volunteer in my local AIDS helpline and on my local AIDS helpline. Most of the calls were either people who are incredibly worried and scared but unlikely to have been at risk, or people who had just received a positive diagnosis and wanted to know what the prognosis was. And at that time, in 1989 and 1990, the prognosis was really poor, and we were also offering family support. But I got frustrated and I guess this is where the kind of the seeds of my HIV activism began to kind of sprout. I got frustrated that I felt like what we were doing on the AIDS helpline was very passive. We weren’t really talking about sex in a pleasurable, joyful way, and all we were offering people was either abstinence or condom use. Instead of really thinking more creatively about sex and sexual pleasure. At a kind of a parallel process, Terrence Higgins Trust started producing information, materials and videos that felt like the kind of stuff that I aligned more with. And so, by the time I left university, a year after I left, with this guy from the environmental activist initiative, we set up and got funding for a small Gay Men’s Health project that I went on to be paid to run for three days a week. And this was a community development project that helped go on the gay scene, went out into places where guys were meeting for sex, lots of engagement with young sex workers, lots of married men, lots of bisexual men and started to produce information and events, safer sex workshops, but using a very, very sexual, pro-active, sexual pleasure stance rather than the kind of the abstinence approaches that people have been speaking about. In parallel to me, setting up the Gay Men’s Health Project, I also set up a chapter of ACT UP in a city called Norwich in the east of England. And so I set ACT UP Norwich and then ACT UP Norwich survived for about two and a half years. And the videos that you see in weRAGEon were all of the historical footage was filmed along with my colleague Gaby, who was part of ACT UP Norwich and two AIDS conferences, the AIDS conference in Amsterdam in 92, and then the following year 93, the Berlin AIDS Conference. And that’s when I started to connect with AIDS activists from across the world. And I was involved for a short block of time in Euro Act, which was a coalition of ACT UP chapters from across Europe to try and plan collaborative pan-European activism and to support activism that was going on in different parts of Europe. And then that was the time when I started to engage with people, ACT UP in New York and San Francisco, ACT UP Golden Gate. And so, my AIDS activism, the kind of the lens shifted from Norwich, UK, Europe, Global. And I worked on the Gay Men’s Health Project until 1996. And that was the point when I left Norwich I went travelling with the guy who then became my husband and we ended up in Vancouver on the west coast of the state, Vancouver for the AIDS conference when we both got press passes, and it was at that conference that by chance someone in the lunch queue told me about a job that was coming at Terrence Higgins Trust. My visa for the US was about to run out, so I needed to leave anyway. So, I flew back to the UK, applied for the job, got the job, and then started the change team. So, with a kind of a splattering of activism going on all the way through that, and that’s where I met Robin Gorna. Robin interviewed me and hired me and was my boss for a short block of time until she went on maternity leave and then she left THT [Terrence Higgins Trust]. So, I guess Robin and I worked together for about nine months.

NP: Well, that’s an impressive trajectory, Will. Could I ask you, please, about Euro Act? Would you like to elaborate a little bit more on its activities, its priorities?

WN: Yeah. So, we used to have periodic meetings. The first one I went to was in Paris. I don’t know if you’ve seen 120 Beats per Minute. So, there’s a scene when a bunch of activists are sitting around the main character’s living room. When I was watching 120 Beats per Minute, I was like, what the fuck this is? I mean, it was like someone had just picked me up and dropped me back in 20 years ago. So, Euro Act was a loose coalition of ACT UP chapters, sometimes also involved activists and organizations that weren’t ACT UP chapters, but shared a similar vein of thinking. A lot of the activists that we discussed worked on how we were going to organize protests at the upcoming AIDS conferences. So, 1992 and then 93 in Berlin. So, there was a lot of collaboration and conversations about what are we going to do? How are we going to get into those conferences? How are people with HIV going to be given a platform? There was often a parallel process between what activists in the States were doing and then what activists across Europe were doing. So, activists in the States were pushing for the CDC [Centres for Disease Control until 1992, Centres for Disease Control and Prevention subsequently; in both cases in the USA] to change their definitions of an AIDS-defining illness, to include much more situations that impacted upon women. And then once that started in Europe, we tried a parallel process of trying to get the European CDC to do exactly the same thing. So, there was learning across continents. We did a whole lot of work about how we might raise the profile about HIV prevention at the Barcelona Olympics that was coming up around that time and including one of the activists wanting to run out and disrupt the opening ceremony. And we started to develop something called the Little Bad Book, which was a pan-European initiative, it was never a book. It was a resource of businesses and organizations, corporations and governments that still had HIV discriminatory policies in place. So, for example, Texaco at the time insisted that all their employees have a compulsory HIV test. And then sometimes what we would do is that we would offer a collaboration if one of the one of the chapters, for example, was doing a demonstration about HIV testing policy in the Netherlands, then other ACT UP chapters might go and offer support by doing a demonstration outside the consulate of that country in the place where they were based. So, we might have gone to the Embassy of the Netherlands and demonstrate the solidarity and stuff like that. And I think it was very strategic. Yeah, it wasn’t, it wasn’t very well-resourced, and it didn’t last very long.

NP: So, does it last until the mid to late nineties, Will?

WN: Yeah, that would have been early nineties. Early to mid-nineties.

NP: Was this network covering the entirety of Europe or was it stronger in particular parts of it?

WN: Definitely stronger in Western Europe. So we had the UK, France, Germany, Netherlands, Belgium, Luxembourg, possibly Spain. I don’t think we reached down as far as Portugal and Greece at that time, but we might have done. To be honest, I don’t remember. But it was much more west than north, northwest Europe. I don’t remember reaching into Scandinavia, definitely didn’t reach into Eastern Europe. I mean, particularly the politics at the time, you know, the Berlin Wall had only just come down. So there definitely wasn’t a reach into places like Poland or Ukraine or Russia or any of those kinds of places.

NP: That’s very interesting. And what was the relationship between Euro Act, on the one hand, and Terrence Higgins Trust, on the other?

WN: There was a very frosty relationship between Terrence Higgins Trust and ACT UP chapters as a whole. And bear in mind, Nikos, that this was this was a very political time and it was also a political time in that AIDS activism gave a home to people who may have been interested in activism but their main activist focus wasn’t necessarily HIV. So, when I think back to some of the stuff that we did in ACT UP Norwich, there were probably a dozen of us who were regularly involved in ACT UP Norwich who came to meetings and took lead from demonstrations. There was not one single person who was open about living with HIV. In fact, I would probably say there was probably no one living with HIV in ACT UP Norwich, and there was a large number of lesbian women who were involved in ACT UP Norwich and other ACT UP chapters. And given what we know we knew at the time and what we now know even more about the epidemiology of HIV, there is some kind of questions about why would what would motivate lesbian women to be at the forefront of an activist movement for a viral condition that they are least likely to be impacted by unless they are injecting drugs or unless they are having sex with their male friends. And to some extent, the agendas started to bleed so that some ACT UP chapters started to do a lot more around LGBT rights issues rather than HIV issues on their own. So those politics were playing out. There were politics playing out as around the extent to which organisations like THT should take money from pharmaceutical companies. And THT was frequently accused of being in cahoots with Wellcome and promoting the drug AZT. And there were some really, really nasty demonstrations that happened outside THT headquarters by a couple of people who had a name Gays against Genocide or GAG. I’ve actually recently seen some of the archive photographs, and these guys took photographs of blow up posters of Nick, the chief THT executive at the time, and put swastikas on his face. They sent like horribly misogynist letters to some of the women who worked at the organisation. They threatened people who were coming in and out of the building, including people who just recently had an HIV diagnosis, and an injunction was brought by THT against a couple of those activists with a cease-and-desist order asking them to no longer protest. And the guys broke that injunction and ended up being sent to prison. And so here you had a situation when gay men living with HIV, where a judge deemed that they should go to prison. And it was horrible and messy and really, really horrible for those people at THT who stood up in court and said, please don’t send these guys to prison. That’s not what we brought the injunction out for. So that helped fuel the distrust against THT. And then there were other things about the sense that organisations like THT were degaying AIDS, that they were they were trying to make HIV an equal opportunities virus, even though it was very clearly not. And debates about whether this was a way of sanitising those organisations, whether it was a way of helping those organisations to become more acceptable to government organisations that would then give them funding. And that led to in the early nineties, a split off. So THT’s Gay Men’s Health Promotion Group resigned from THT or a large number of resigned and went on to form an organisation in 92, Gay Men Fighting AIDS (GMFA) and they formed because they felt in part that HIV prevention work had become too generalist and that organisations like THT were no longer focusing on HIV prevention with gay and bisexual men. So, there was, there was a lot of antagonism, there were a lot of politics, THT, despite its size was seen as being this kind of big monolithic organization. And when I worked for THT, when I decided to apply for a job with them, whilst THT had been the organisation that had provided me with their HIV prevention information that I had needed as a young gay man, I applied for that job with the sense that I might be watering down my politics, maybe I was becoming part of the establishment. And so, to go back a long way of answering your question that the relationship between THT and ACT UP chapters, including Euro Act, was often antagonistic. And yet when you look to the case study included in WeRageOn, there of the demonstrations against THT at the 92 Amsterdam AIDS Conference, I think for me really illustrate the antagonism that was felt towards THT for now with the hindsight of history, was really unthought through, was really unfocused, and for me exemplifies this issue about who got to determine ACT UP’s priorities. And I remember sitting in the activist centre of the International AIDS Conference in 92 with a bunch of activists from the US who had seen the posters that THT had brought out that were protested about, including women who identified as being lesbian, some of whom were living with HIV, who felt that the information that THT was being put out was wrong and dangerous and potentially could lead to people getting HIV unnecessarily. And I can remember that the push to demonstrate against THT was in part led by some of those American activists. But also I felt that this was if you really look at if now we were doing a policy analysis of what are the most striking issues in 1992, the impact on people with HIV or people at risk of HIV, a set of posters put together for a really limited period of time by a UK HIV organisation should have been so far, so far down our collective activist agenda. Given that there were no there were no HIV drugs keeping people alive, the clinical trials were falling apart because there were no clear protocols, that people in the US living with HIV weren’t being allowed back into the country, that there were people being put in detention camps, that people were being fired from their jobs, that thousands of gay and bisexual men right across Europe were being diagnosed with a virus. That we knew that most of those people will die from within three or four years’ time. And yet here we were prioritising a massive high-profile demonstration about something that was so minimal. And I don’t want to minimize how some of those lesbians felt about what THT were doing. But looking back in hindsight, it’s so minimal compared with what most of the people in the world living with HIV or at risk of HIV were dealing with that. Actually, looking back at you feels I’m embarrassed that we did that. And actually, The Times newspaper did a write up and described this as lunatics taking over the asylum. And actually, I look back at that and thinking, well, they were actually not far off some of the things that we did, some of our activist priorities now feel really irrational given what we knew, what else was going on in the world. And that’s that, again, is not to belittle some of the fantastic activist priorities that did happen. So, some of the treatment activism that happened, some of the really good, long-lasting work around employment discrimination, all of that, all of that stuff was fantastic. And those, I think, were the right priorities. But looking back, I think some of the decisions to target THT were also driven by some antagonistic history between some of the UK ACT UP members and some of the people they knew across Europe. It’s almost like, let’s go and give THT a bloody nose because they deserve it, because they’ve taken money from pharma or because my friend didn’t get a job with them or because what? List of the reasons and, Nikos, this was a part of the psychodrama of the time. And, you know, I’ve talked to people who were involved on both sides of that demonstration 20 years after. And, you know, some of those people just said ‘I was grieving’. I needed somewhere to take my anger. I sat behind a stall at that demonstration and heard people accusing me of all sorts of things just after my partner had an HIV diagnosis, or just after I’d been thrown out of my home. And so, to say that to give us some context about what it was like with that much community and communal grief going on. But that doesn’t mean to say that those priorities were the right priorities.

NP: I understand what you mean. In the meantime, what was the relationship between ACT UP Norwich and other charters of ACT UP in the UK, like in London or elsewhere?

WN: Yeah. So as soon as we set up ACT UP Norwich, we made links with the other ACT UP chapters that we knew about and those were mostly Manchester, Leeds, Leicester. There were a couple of chapters in Scotland that we didn’t really make much contact with. And then ACT UP London in part because my partner at the time moved from Norwich to London and he joined ACT UP London. And so, there was a kind of a nice bridge between those two chapters. So, it’s those five, those five chapters and we, we started to have UK wide meetings. We had what we called ACT UP UK meetings. When anyone from any of those chapters came together about every three or four months, we would rotate round all of those sites and we would usually try and combine the meeting with a demonstration at that particular place. So, in Leeds, when we met there, we had two days of meetings and strategizing, thinking about how we’re going to work together. And then we went and did a big demonstration through Leeds City Centre against the police because an earlier ACT UP demonstration where they’d arrested people, they’d all worn gloves. So, we all had this big rubber gloves demonstration. So we would always try and fit that in. And I would say, Nikos, that kind of way of collaborating lasted for about a year or 18 months. But I think we came to a big, a really challenging moment in, in ACT UP in the UK, the ACT UP in London in particular, straight after the Berlin AIDS Conference. And for me that was, that really focused on who was leading ACT UP, whose voices were being heard. And I’ve already said that, you know, a sense that in most of the act, UK ACT UP chapters, they were not led by people living with HIV. And as a result of that, the agenda setting was different to the agenda setting that might have happened if there was a majority of people living with HIV involved in those groups. In 1993, at the Berlin conference, we had international ACT UP meetings every night to share information and share intelligence, talk about collective demonstrations and actions we might do the next day. But also we had UK meetings to try and organise UK-focused actions. Some of them went really well, some of them ended in kind of chaos, as you would expect when you bring a bunch of people together. And I think I’ve got this amazing photo. I think it’s on a website, with at the very, very end of the conference. And there’s about seven of us from ACT UP Norwich and ACT UP Leeds all sitting around a table all looking like this, and we’re all really pissed off with each other and everyone just wants to go home. You know, we’ve been doing this for ten days, sleeping on people’s floors. We’re all running out of the small amount of money that we had. Now, this was this was pre-Internet, pre-mobile phones. So organising was very different. And, you know, you might show up where you thought the demonstration was going to be, but actually they’d have to change it and then go to a call box and try and work out where everyone was. And so, it was exhausting, but also ACT UP London had taken a grant, a donation from the Wellcome Trust, and at the time the Wellcome Trust was seen to be very closely associated with Burroughs Wellcome, the drug company. And there’s a guy who was kind of the lead person in ACT UP London, and had a good relationship with an advertising company. An advertising company wanted to prepare and produce a whole set of bus shelter adverts about safer sex and came up with these really sweet designs and they were going to offer pro bono or really, really cheap advertising space. And [this guy] brought this to an ACT UP meeting and said, I’d really like to do this. This would be great. And a bunch of people said, ‘well, this isn’t activism. This is HIV prevention. This is what people like the Health Education Authority should be doing. We don’t support this. We don’t want to do it’. So, [his] view was, well, fuck you then, and ACT UP London will do it. We can do it on our own. But then [he] went to try and get money to fund it and managed to get 50,000, £50,000 donation from from the Wellcome Trust. And then the advertising idea fell apart. The big company involved got cold feet and pulled out. So, we had this donation and suddenly the gay press started running stories, that ACT UP were taking donations from a trust that was very heavily associated with one of the drug companies that we had been demonstrating against, the company that had produced AZT. And so, there were people saying, ‘hang on, ACT UP, you hypocrites. At the AIDS conference in 92, you were demonstrating against THT for taking money from Wellcome. And now here you are two years later, taking money from the Wellcome Trust, who gets lots of its money from Wellcome Burroughs, the drug company. And we think this is despicable and all the rest of it’. So I got really heavily involved in all of that, embroiled in that and in part because [he] was a really good friend of mine and [he] suddenly felt very vulnerable. And so, what ended up happening was that we split the money, half of it went to cover the flights and the costs for 50 activists from the UK to go to the International AIDS Conference in Berlin. So, half of those places went to ACT UP chapters and the other half there was, you could write in and say why you wanted to go to the conference. And then we allocated spaces to people and the other half went to basically a fund that community organisations could apply for, and those funds were distributed by the National AIDS Trust. But, because we were taking 50 activists to the Berlin AIDS Conference and half of them being people living with HIV, lots of those people then started attending the ACT UP chapter meetings. So, the dynamic shifted away from chapters from the UK predominantly being HIV negative or untested people through to lots of positive people. And this tension started to emerge because lots of those positive people were saying, ‘why do you want to run this demonstration over here? It is about a long-term, possibly unrealistic, possibly unachievable goal that I’m never going to see because I need drugs in my body? Why are we not over here fighting hammer and nail to get drugs that I can take, that’s going to keep me alive until a cure comes, and this tension starts to emerge’. And actually, what happened is lots of those people just said, fuck you, ACT UP, and went on to form something called the UK Coalition of People Living with HIV and AIDS. The UK Coalition lasted for about ten years and also had a magazine called Positive Nation that was associated with it. So, there was this big tension that happened, this big kind of explosion that happened, and that led to most of those ACT UP chapters just dissipating. Most of us were burnt out and I don’t think ACT UP Norwich met again after that. I think we were all like, okay, it was great while it lasted, but let’s get on with other stuff in our lives. ACT UP Manchester and ACT UP Leeds carried on for a bit longer. But that was it really. That was that was the catalyst, I think so.

NP: Then, speaking of activism in ACT UP Norwich and ACT UP in general, did die-ins play an important role as a practice?

WN: So, the first demonstration we ever did, as ACT UP Norwich was a die-in in Norwich City Centre on World AIDS Day. And it was it was symbolic. We weren’t protesting against anyone. We were giving out safer sex information. So, half of us did a die-in. The other half of people were running around giving young people information about World AIDS Day and what it was, what it symbolized. Nikos, herein lies, I think, the contradiction for me that was embedded in ACT UP and ACT UP Norwich right from day one. So, we asked people who were involved in other HIV organisations, including the Sexual Health Staff, the Sexual Health Clinic, to come and join us and to ask, ‘what do you think? We’ve got this right, given that there are there’s no one who’s living with HIV, in fact, in ACT UP Norwich is planning this event, so what do you think we should do?’ And the feedback from the Sexual Health Clinic where they were looking after and offering support to people with HIV was we don’t like the word “die”. “It symbolizes that we’re dying. Can you call it something else?” So, we change it to a lie-in, which was a lying down. And, you know, maybe if we’d had positive people involved right from the start that we would have, we would have understood that. So the die-in was the first thing we did in Norwich, but we didn’t ever do any die-ins after that. Everything else we did was either loud, noisy protests and demonstration of Benetton, or when we targeted Texaco, we either held banners outside Texaco or we have these little stickers that said “Texaco out of order”, and then really, really small letters underneath it said “For HIV discrimination”. And we worked out the petrol stations, the gas stations at the time that were 24-hour ones. They only ever had one staff member in a kiosk who would pay. And that staff member was not allowed to leave the kiosk under any circumstances. So, we would wait until the last person started their shift. We would get the stickers, we would plaster the front of the petrol pumps with a sticker that as you were driving up, you would see it said Texaco out of order. You think, oh, the petrol pumps aren’t working, and then you would drive off without giving them any of your money. And the person in the kiosk couldn’t come out to take the stickers off because they weren’t allowed to. And so, this time we worked out, Texaco was going to start losing lots of money. If in effect we were closing down the service stations with only one of you having all two of you having to go in and do an action that took 5 minutes, that was as impactful as having 20 of you standing and blocking the pavement. So, we started to rethink our tactics so that you could actually be almost like these little guerrilla groups. We did do die-ins and lie-ins in other events, but we generally tended to do them when we’re involved in international work. So, I remember almost all of the actions that we did at the AIDS conferences involved die-in. And so, you go to a drug company stall and you would all just take it over and lie down as this kind of simple, symbolic death action.

NP: What was the origin of the die-in/lie-in? Was it something coming from activists in the United States or other movements, perhaps?

WN: So, I mean, because I was involved, as I said, I was involved in early anti-nuclear demonstrations and I remember coming into places like London to demonstrate against, cruise missiles in the UK. This would have been the mid-80s. It’s a long time ago. So I was, you know, I was at school, and I remember coming on a coach from the West Country into London. And I remember doing die-ins there. And they were symbolic of, you know, if a nuclear bomb drops now on London, this is what the street will look like. And so, you had 100,000 people just quite literally doing a symbolic die-in. And, you know, it was symbolic because it was the press to take loads of photos or a helicopter up to take an aerial view of 100,000 people dead on the streets of London. But the other thing that we did through the campaign for nuclear disarmament was on Hiroshima Day. And with the 6th of August, we would go, and we would paint chalk, shadows on the pavements to symbolise people that apparently when the Hiroshima and Nagasaki bombs were dropped and if you were in the right of the hub of the explosion, your bodies just burnt to ash. And then it left this pattern of where your body was on the sidewalk. So, lots of anti-nuclear demonstrators would go out with real people. So, you would lie down and someone would use chalk paint and paint around you, or you would have cut-outs of people and you would just paint the pavements and then you would leave them often with a little note to tell people this is what it was symbolising. So, I don’t think that the concept of a die-in or a lie-in, I don’t think it came from HIV activism. I think it was borrowed from the civil rights movement and from the anti-nuclear movement, and they probably borrowed it from somewhere else.

NP: That’s very interesting. Very interesting. I was wondering about what you mentioned beforehand, your approach to prevention and the discourse of sexual pleasure when addressing AIDS as well. So, did your contacts with activists from other countries influence those ideas of yours at all?

WN: So, yes and no and yes. So yes, the 92 AIDS Conference in Amsterdam, I met with some HIV prevention activists or educators from the Netherlands who have produced safer sex video series, which was basically a workshop with a video that you, you know, you’ve got a bunch of guys in a room for 3 hours and it was kind of modular. And you showed different parts of the video and what would the guys do next? And it was very, very sexually explicit and there was no euphemism. It was it was a very Dutch way of doing things. It was no nonsense. So, it shows guys fucking and guys going on a date and someone putting on condoms and all the rest of it. And me and my colleague took an order form from that video. We came back to Norwich, we sent off for it and the video got impounded by Customs for being obscene. So, I got threatened with prosecution under, under obscenity laws and we challenged that, you know, this was, this is what the climate was like in the UK in the early nineties, you know, the height of Thatcherism and moral hysteria. So, to some extent I would say my, my practice and my thinking around prevention was influenced by this kind of people I met. And so, I borrowed materials from other parts of Europe.

And I said, yes, no, yes. It was also not influenced by, I think, a highly panic-driven moral agenda that was really kind of fomenting in the States, which was in part driven by grief. I experienced this when I did the work with THT in the early 2000s, when we looked at kind of harm reduction models of safer sex, when we put information out into the public domain to talk about anything that wasn’t only 100% condom use. I received letters and phone calls from guys who would say, “I lost 20 of my partners or I lost the guy I lived with for five years. If you had ever experienced what I had experienced, you would never for one minute suggest that anyone should have sex with anything other than with a condom”. And so, the guys who, for one reason or another, 100% consistent condom users, started to attack our practice because they said we were irresponsible and it could lead to someone getting HIV. To which my response was, I can stick my head in the sand, in the sand with you if you’d like me to. But I know from my own friends, my own sex life, my own experience of what I’m seeing in London. But that’s not how most guys live their lives. Most guys do not consistently use condoms 100% of the time. And you cannot allow your grief, your pain, to influence what other people do in order to reduce their own sexual harm.

And at the same time, as I was getting the kind of safe sex videos from Amsterdam, I was also dealing with some other activists, including other parts of Europe, who wanted to use panic-driven ways of doing HIV prevention. There’s a German group who wanted to talk about safer sex and showed a poster that had the image of a guy who was just about to die with an absolute decimated body and his face all shrunk and saying, you know, you use a condom or this could be you. And we you know, we know that fear doesn’t work. We know actually what it does is, it pushes people away. People who aren’t the good boys, who aren’t following what they’re told to do, end up disengaging. They don’t end up coming to you when they when they haven’t being 100% what you’ve asked them to do, because they’re fearful. We’ve seen this with COVID. And so I had a very, very early lesson in how not to do things. And I’m really grateful that I learnt how not to do things because I think lots of HIV education activists at the time felt that they had the right to tell people what to do. And I’m really grateful for being surrounded by a small bunch of really brilliant ethical activists who really helped me to understand why telling people what to do doesn’t work. And I do not have the right as an educator to tell people what they should do with their bodies. And so, I was able to disregard some of that educational activism. And so, yes, some of those international collaborators, those activists did influence what I did.

And then I said, yes, no, yes. And then finally the other the other thing that really, really tipped me into focusing the work attention on the harm reduction model rather than 100% condom use model, was some activists in Australia and some activists in Canada who I encountered, I think it was the Geneva AIDS Conference, which would have been about 1998. And one of the Canadians who was there showed me a really, really simple, almost hand-drawn kind of comic book that talks about different ways that you could reduce HIV risk during sex without condoms. And it was basically targeting guys who were already fucking without condoms and saying, this is what we can do to make it safer. And it was really clear that this was never to make it safe sex, but to make it safer for sex. And that influenced, massively influenced what I did next around prevention. And I did quite a lot of both formal and informal collaborative work with a bunch of those people, including some really great people in Australia where we shared ideas, we collaborated, we shared evidence and quite often mirrored some of the work that we were doing.

NP: What about your approach to AIDS treatment? Was it again also influenced by your transnational contacts?

WN: Yeah, absolutely. And so I, I tended to stay away from AIDS treatment activism in part because I didn’t understand the science, but in part because I felt I should be an ally around treatment activism and I shouldn’t be at the forefront of it. And that it was right that people living with HIV determine clinical trial protocols, should be on community advisory boards. And to be honest, some of those treatment activists are really, really scary and intimidating just because they were so damn smart! And, you know, I don’t do stats very well. I don’t do, you know, chemistry and biology very well. And lots of the guys were talking about things that I just didn’t really understand. But when I moved to THT in 1996, I worked alongside a woman called Lisa Power. And Lisa was and still is an amazing activist. Lisa and Robin and I all worked at THT in the kind of same over a period of 6 to 9 months together. And Lisa started doing some great community advocacy work around HIV treatments in the UK through the work at THT. And I remember being in a small conference in my first year at THT and hearing Lisa present a whole bunch of data and just going up to Lisa at the end and saying, Lisa, you’ve just turned me into an HIV treatment activist. How do I get involved? And that meant I started to learn how clinical trials work. What are the different phases of a clinical trial? What do they involve? What do clinical trial protocols start to look like? And from that, whilst I haven’t been involved in HIV or AIDS treatment activism for a long, long time, I’d been able to take all of that learning from AIDS treatment activism into what I now do around PEP access, PrEP access, HIV preventative vaccine trials. And all of that was learned from those international and UK-based AIDS treatment activists and everything I learnt about clinical trial activism, I actually learned from the Toronto AIDS Conference, which would have been, I want to say 2000. And actually, no, it wasn’t the Toronto one. It was the Vienna AIDS Conference. I think there was this amazing session in 2012, 12, 12 years ago, an amazing session run by community activists from GMHC in New York in the global village at the HIV conference. And I just rocked up. It was like it was kind of 101 to clinical trials and understanding how clinical trials happen. And I learned everything that I needed to know that I’ve since used around clinical trial protocols and development from an hour-long community activist workshop run by AIDS treatment activists from the States, from New York.

NP: So, Will, did treatment activism feature prominently in ACT UP or ACT UP in general in the UK?

WN: In the UK? It didn’t. Definitely didn’t in Norwich. Definitely, definitely did not. I, I can barely remember us talking about AIDS treatment activism, unless it was about pricing or unless it was about who got on a clinical trial. But I think most of that we kind of we kind of followed what was being done by US activists around that. And there were some great European AIDS treatment activists, and there still are. But just in the same way that in New York there was that split between ACT UP New York and then TAG, the Treatment Activist Group. There was a bunch of UK based activists that went on to form NAM, National AIDS Manual or AIDS Map, as is now known. Some of those early people involved in NAM went on to write really great documents and really great policy around treatment activism, people like Edward King. And then in parallel, there was an organization called iBase that’s another AIDS treatment group that was set up and led by people living with HIV, which was slightly different from the National AIDS Manual. That was seen as a bit more of a generalist organisation, whereas the organisation Simon [Collins] set up was very much driven by people with HIV.

NP: And then in the nineties, Will, were you involved in any commemorative practices for people who died of AIDS, like the Names Project?

WN: So, I wasn’t involved in the Names Project. The only time I encountered that, the AIDS quilt was, I think, in London pride in 1993, where there was a great big set of the quilts laid out. And there was cynicism about that project in some quarters of AIDS activism, HIV activism, a sense that we don’t have time to grieve. We why are we focusing on death and dying when we should be focusing on the fight to keep people alive? You know, we could psychoanalyze that one to death. It used to be called the duvet of death rather than the AIDS quilt. And there were you know, there were certainly people I knew who were very sick and saying, if you ever create an AIDS quilt panel for me, I’ll come back and haunt you until, you know, until you die. So, there was this kind of weird kind of snobbishness about amongst a bunch of activists. What I did go to, and it was very powerful for me, I went to the memorials that were held in Trafalgar Square, and actually they were they were hosted by THT. And I went to a couple of them in the early nineties and I remember the one where GMFA [Gay Men Fighting AIDS], was just about to launch and they did something that got a lot of coverage. It was slightly controversial, but they were measured in what they do. And at the periphery of Trafalgar Square, activists from GMFA, a guy gave out a postcard and the postcard was two sides. And on one side it said, “this is to arouse you”. And it had a photograph of a guy on erection, and then the other side had said, “this is to enrage you”. So aroused the rage and the rage was this number of people have died. This many guys got HIV last year. This many people are dying, government aren’t funding this and GMFA gave them [the postcards] out as people were leaving this memorial event. And that caused a lot of anger because there was a sense of ‘you’ve hijacked a memorial event’. Some people felt it was distasteful to be giving out postcards with the images with a hot guy and a big erection on, after you’ve joined a community grieving event. And I thought it was the right thing to do. And I remember grabbing a handful of the postcards from the guys and getting back on my train to go up to Norwich and writing myself notes about why it was important to maintain this anger and what I was going to do next.

But I can remember the few times I went to them [Trafalgar Square candle light memorials] being really touched because it gave you the opportunity to quantify how HIV was impacting on our communities, because they would read names. Martin, Nikos, Steve, Ahmed, Ritchie, and you would suddenly hear someone next to you wail because the person’s name had just been read, the lover had been read. And I can remember a guy who I didn’t know very well, he was an American guy. And I was there with my partner at the time. And (this guy) just looked around at us and tears streaming down his face. He just said there’s 20, 20 names of guys I loved. And so, it became very powerful. It became very tangible. And I think looking back now, I wish that we had been able to drive more of a common ground between the activist anger, the kind of the hard, hard-core activists and the people who wanted to do things like commemoration and NAMES, quilts and balloon releases. And I actually think in retrospect now when I think about what good activism is, good activism involves finding time to grieve. Good activism means finding a place to nurture and to acknowledge you are hurt and your anger and the pain and to name these things. And I say that with the caveat and also understand that lots of people have gone to lots of funerals at that time. And it was a horrible, horrible time for many people. And so, I understand why lots of people wouldn’t want to go to an event like that. So, from when I think about good activism and smart activism, I think, in retrospect, we should have been more forgiving of these kind of events rather than being quite so cynical of them, because for me, they were very powerful. And I’ve certainly found the space to commemorate and remember and to reaffirm my activism by attending some of those events.

NP: And at that point, Will, were you discussing what the AIDS activists in the USA were doing, like political funerals or the Ashes Action?

WN: We did have discussions about it. We saw it happening. People we knew and loved were involved in those demonstrations. When I watched both of those films, the US films How to Survive A Plague and United in Anger. When I watch that footage back now, I see people in those demonstrations who I met at conferences and with whom I’d been exchanging faxes and letters with, people like Eric Sawyer. And I remember being in a meeting and Eric, Eric telling me about these political funerals. And now, two decades later, you see that footage being put into the documentaries we’re watching. And I think that’s the contradiction that started to play out. And I’ve been doing a lot of work and a lot of writing in the last few years about what I call smart activism. I think one of the things that failed with the early iterations of ACT UP and to some extent we still haven’t learnt from, is that we take a model of activism that works in one part of the world and we try and ape it and transfer over to a different setting where the political system is different or the culture is different. And I think those early days of ACT UP, why ACT UP fizzled out so fast in the UK, ACT UP London fizzled out so fast, was that they looked at what was going on in the States. They said, this is a great idea, this is a brilliant model, let’s do that in London. And some of the early demonstrations were trying to copy what was going on in the States without looking through a cultural or political lens and wondering how you could take the best elements of that and transfer that over. And we’ve seen some of that in PrEP activism, some of some of the models of PrEP activism that have worked really well in the UK, for example, encouraging, facilitating people the ability to buy by PrEP online from overseas. People have tried to ape and transfer to other settings and wonder why it hasn’t worked. And often why it hasn’t worked is because the laws and the regulations on self-importation of generic drugs are different in those countries and your drugs don’t arrive. Or the person giving the advice is giving advice that could be deemed to be illegal and therefore they’re being censored and silenced or even fined. So, I think this is my overall critique of an activist model that attempts to take what’s happened, what’s worked, what’s been visible in one part of the world and trying to transfer it across to another place without thinking enough about it.

NP: Speaking of AIDS activism more broadly in the nineties, Will, I was also wondering about the extent to which migrants or people of colour participated.

WN: There has been a narrative about early nineties about ACT UP activism that in certainly for a European and UK and European perspective, we failed to attract migrants and people of colour into our movement. And Gaby, with whom I am doing the WeRAGEon film, and I have been working on weRAGEon for about seven years just because it’s a labor of love, when Gaby and I were talking about who we wanted to go back and interview for, weRAGEon. We were both really cognisant that all of the people we have footage of were all white, and I think all of them are cisgender. And Gaby and I reflected, well that that’s not fault of the film. This is this is a fault of the makeup of ACT UP at the time. And then we were trying to look back and remember back 25 years to who was this a function of who attended those conferences, were these conferences generally attended by white cis people? And Gaby, Gaby’s got some great footage that she took at the Amsterdam AIDS Conference that pans across. And the audience is full of people of colour and so what Gaby and I took from that was lots of lots of the people who are not white either were from parts of the world where the type of activism we were doing was not seen as appropriate or necessary or acceptable. Or, those people didn’t want to be involved because they were scared of getting arrested and deported, or they were government representatives from those countries, for example. Or they were doing activism, but they were doing activism that was in parallel to what we were doing or the type of activism we were doing was just not appealing or was seen as being too radical or too threatening. And when you look back at the footage of what we were doing at Berlin and Amsterdam, almost everybody [was white] in global ACT UP meetings, with a couple of exceptions. And those people were generally from the US. And I’ve also reflected so a guy called Marc, who is the co-founder of and the co-director of The Love Tank with me, he’s a Black gay man living with HIV of a similar age to me. And Marc and I often talk about why was AIDS activism in the in the nineties so white. And Marc’s reflection is lots of Black people had other things going on, including the toxic racism of the eighties and nineties in Thatcher’s Britain. But also, if you are a person of colour and you go on an ACT UP demonstration or you go to any demonstration and the police turn up, who is the first person that they’re going to arrest? Who is the first person [to be arrested] if you are one of the few people of colour? I remember from the work that I did, the anti-apartheid demonstrations I was part of in Norwich, when I was at university, and we used to go and picket the local Shell petrol station because Shell was highly associated with the apartheid regime. If you are a person of colour and someone has a problem with your demonstration, they don’t call you out as demonstrators. They start picking on the Black people and using racism, which is exactly what the experience that I observed in lots of the anti-apartheid demonstrating demonstrations in Norwich. Plus, in a place like London, if you are a person of colour that also intersects with other inequalities, so you are much, much more likely to be poor. You’re much more likely to be working-class, or much more likely to be dealing with other health inequalities, which means that an activist movement where you are able to go to a meeting for 3 hours every Monday night, where you are able to go to a demonstration on a Saturday, where you’re able to risk arrest and you have the economic capital to be able to pay for your bail or you’re able to spend a week in jail because you’re making a political point, all comes from a point of privilege and a point of privilege regardless of your ethnicity. That means that, you know, you don’t have dependents. You are not dependent on a job, that if you’re if you if you get arrested and don’t go to work on Monday morning because you’re still on bail, that you’re not going to get fired. So, there’s all these kinds of intersections that influence who has the privilege to be on the front lines and who doesn’t.

And then I think there’s another reflection for me, Nikos. And this was actually this was actually reflected to me from an activist from ACT UP London who came up to Norwich when I was still at university and did a kind of a seminar. And he raised the issue that there were two groups of people in the early nineties who were most likely to be diagnosed with HIV, and they were gay and bisexual men and Black Africans. Those are the two groups of people. And he raised the issue, how are we going to start to navigate as an AIDS activist movement issues around homophobia in Black African communities and racism in white gay communities, because at some point we’re going to have to confront this and we’re going to have to start talking about it. And his observation, and the observation from most of my Black friends are, why am I going to rock up into a meeting with a bunch of white, cisgender gay men who have never experienced a person of colour. They’re going to have no, no, no sense of my world experience. And conversely, why am I going to as a gay man, why am I going to walk into an environment where I’m with people who may have had, up until this point, absolutely no contact with a gay person who may hold their own prejudices and issues. And I think, you know, this activist from ACT UP London really started to probe and challenge some of our collective thinking about the siloed ways in which AIDS activism had happened. And, you know, thank God, a whole bunch of us have done work on this because I think now we are in a really fantastic space, look at the work we do at The Love Tank, and I know that The Love Tank is extraordinary, but we actively pursue and work with and mentor and find the funding and support people who are ordinarily least likely to come forward to be involved in some of this work. And I know we’re extraordinary. There are other organisations where I think we can absolutely say they are not much more than white cis people. And so, I think that there has been a really positive impact of some of the early nineties activism that a bunch of us were challenged to think about what it would be like to be a person of colour coming into a predominantly white movement and what it might be like to be a queer person going into a predominantly heterosexual movement.

NP: That’s such an important issue. Well, thank you very, very much. Will, I don’t have any more questions, but do you think that there is anything that you would like to add that I haven’t asked that might relate somehow to transnational connections and AIDS activism?

WN: Nothing springs to mind.

NP: Thanks a lot. Have a great day, Will.

WN: Bye bye!


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