Interview with Tony Whitehead

Tuesday 21 February 2023


NP: Please allow me to begin with some more general questions. Please provide some information about yourself, including where you were born, where you grew up, your education, and your occupation. When exactly were you born?

TW: I was born on February 6, 1954, in North London.

NP: And did you also grow up there?

TW: I lived in a satellite town just outside of London until the age of 13, after which we moved to Yorkshire. From ages 13 to 18, I lived in Yorkshire, and from ages 18 to 21, I attended Durham University.

NP: Then, Tony, would you tell me what you consider to be the defining moments of your involvement with AIDS activism?

TW: Yes. That was the conference organised by London Lesbian and Gay Switchboard, which I believe was the name at the time, and the Health Education Council or Health Education Authority, I cannot recall which. And this occurred at Conway Hall in 1983. Prior to that, I had worked in and out of the country and spent approximately nine months in South America. I spent a year in the Spanish Canary Islands. Consequently, I volunteered for London Lesbian Gay Switchboard. So, while working with them in the country, I learned about AIDS. But what made the conference significant was hearing from people directly affected by AIDS.

NP: That is very intriguing. I believe it was a profoundly moving experience.

TW: Quite. I cannot recall the exact names of those who were present. There were a few physicians present. I cannot recall if Rupert, Terry Higgins’ partner, actually spoke. A man named Mel Rosen from the New York Gay Men’s Health Crisis was also present. Where [New York], obviously, the disease had spread further, and [the activists] were further along than we knew in London. So, I listened to these individuals, and it was a very visceral experience. I was horrified by what I heard.

NP: I imagine! And then, Tony, what about the latter part of the 1980s, such as the formation of ACT UP in London? What role did it play for you?

TW: No, I didn’t. I was certainly sympathetic, but the situation was complicated. When we were attempting to develop ideas for safer sex, the Terrence Higgins Trust was heavily criticised by several individuals. These were topics about which people had understandably strong feelings. Therefore, our relationship with organisations such as ACT UP was always complicated. I believe [The Terrence Higgins Trust] was perceived as being very close to the medical establishment, whatever that might mean. We collaborated closely with hospitals and physicians because we met with them and because I and others visited patients in hospitals.

NP: So, Tony, you remained affiliated with the Switchboard and Terrence Higgins Trust?

TW: Remember that Terry’s friends and partner established the Trust under the name Terry Higgins Trust. I followed on from that meeting I told you about. I basically stood up in the meeting and said, ‘these people clearly Terry’s friends and need our help and support, so let’s get together’. Consequently, I ceased working for Switchboard on that date and devoted all of my time to the Terrence Higgins Trust. I believe the name change was necessary, but we were simply re-establishing it as a legal and charitable organisation. Therefore, this type of fundraising and all other tasks had to be simplified. Thus, this was the first major job.

NP: And what was the impact of section 28 on your activism?

TW: It was extremely challenging. I and the people with whom I worked for justice wanted to take an immensely pro-sex approach. And education about safer sex, gay sex, is impossible without, you know, being completely open and speaking very positively about it. Thus, we were vehemently opposed to the entirety of Section 28. And we’ve begun building bridges with government officials quite early on. I do not wish to deviate from your enquiry, so…

NP: Please, feel free to elaborate.

TW: I don’t recall the exact date, but it wasn’t long after that that we relaunched the Trust. Sir Donald Acheson, the chief medical officer at the time, was also present. He stated, essentially, that we need to know how to communicate with the gay community about this issue because it will be extremely serious. You are the people on the ground who are capable of doing this to us. That was the end of it. Shortly thereafter, we met with Norman Fowler, who later became the Minister of Health. And we got on very well. I still see him occasionally today. He was extremely helpful and concerned. I believe he was essentially stating that we must find a way to circumvent the position taken by the Conservative Party on issues such as Section 28.

NP: That’s interesting.

TW: Therefore, we were very fortunate to have those individuals sit down. At that time, Donald Acheson and Norman Fowler were in office.

NP: And Tony, what about other groups besides ACT UP? Individually or as a part of the Trust, did you collaborate?

TW: Several groups emerged, and then some of them disappeared. At the start of my involvement in 1983, the virus had not yet been identified. Therefore, the individuals became ill and were diagnosed with AIDS or other conditions related to AIDS. However, it was not confirmed that we are HIV-positive because the virus was not identified. So, a group called Frontliners arose from individuals involved with the Trust, who all had AIDS or were becoming ill and believed it was most likely AIDS. However, other groups within HIV-affected communities felt that the Trust did not necessarily represent their interests as effectively as desired or required. There was also Positively Women, which was founded by Caroline Guinness and her friends. There were groups for people who injected drugs that began in the Trust, but later grew outside of it. Needless to say, this was a significant method of HIV transmission. And then there was a group known as the Black Liners, which consisted of individuals of diverse cultural backgrounds. As with self-help, it is believed that the best people to understand and represent those directly affected are those directly affected. All these organisations were primarily concerned with assisting those directly affected. And the Trust was heavily involved in public work, lobbying, and education. And then, of course, there is the diversity of the country, not just its ethnic composition, but also the diversity of the various countries that make up the United Kingdom. A group called the Scottish AIDS Monitor was established. I can’t recall what it was in Wales, but in other parts of the country, such as Manchester’s George House Trust, various organisations were established to address the needs of the local population. I also understand why the Terrence Higgins Trust was believed that a London-based organisation would not fully comprehend the complexities and needs of HIV-affected communities in Scotland.

NP: Oh, this is very interesting, Tony. So, speaking of diversity, were there also any conflicts within the trust concerning people who varied in terms of ethnic background, gender, social class?

TW: I do not recall any conflict. It was widely acknowledged that the Trust represented a type of white, middle-class gay male. We had the wonderful Janet Green working in the office, as well as a few other women who volunteered, despite the fact that there were people who did not fit that description at that time and in the very beginning. However, we were keenly aware of who we are. The image was of a middle-class nature. Primarily white and British. A university-educated, educated group. Therefore, there was much discussion about attempting to comprehend and move beyond this definition. I cannot recall any additional details, but it was something we were acutely aware of.

NP: That’s interesting. But you told me that there was a group of Black Liners that emerged within the Trust.

TW: It emerged independently, emerged outside the Trust, established by people who had contact with the Trust.

NP: Okay.

TW: No, they were they were quite independent. The only group that really grew up within the trust was the Frontliners. That was, I think, the very first of these other groups to come.

NP: And then later in the eighties or in the nineties, do you remember about your activities within the Trust and the roles that you undertook and important tasks in your opinion?

TW: My formal role from the beginning of my involvement, when we put the Trust on a business footing, was that I presided over the Board of Directors. Due to the fact that I majored in zoology and psychology in college, I was particularly interested in the educational aspect of the work. In addition to the meetings with the directors, I am interested in this aspect of the business. Because they wanted to visit a close friend in Australia, I gathered some funds and also contributed some of my own. I was able to secure grant funding in 1985 so that I could afford to travel to various locations and spend time with AIDS organisations there. I cannot recall the order in which I visited New York, San Francisco, and Los Angeles, but I spent a couple of weeks in each city. I recall a brief period of rest and recuperation in Hawaii, but it was only a few days. New Zealand, Australia, Sydney, and Auckland. These were all English-speaking locales with many similarities. I suppose that would be a criticism. On the other hand, the response to AIDS in each of these regions was quite advanced. The Australian groups were very active, and I returned with a great deal of material. Not only did we learn from the literature, but some of our early Trust posters were, if I recall correctly, with permission, direct copies of Australian posters, albeit with obviously different text. Consequently, I do recall that. I also recall having several meetings with Dutch individuals in an effort to develop a more European response. I have no idea what transpired there. I do not believe it was as fruitful. I’m not sure. It was very, very difficult regardless.

NP: Well, that has very nicely precipitated my question. So let me please ask you a little bit more about your transnational connections. So, how long-lasting were those, for instance, with New York activists or Australian activists?

TW: I cannot recall. In 1987, I returned to Australia for a private visit. There was no Internet at the time. Therefore, the type of effortless communication that we now take for granted was not available. I believe we exchanged information via snail mail. Nonetheless, I feel compelled to note that my direct involvement with the Trust began to wane around the year 1988, when I met someone who joined the Trust. Because he has a history of drug abuse, he was in fact present. And he was present as a member of the team analysing information for drug users. We were infatuated. We united as a couple. He became gravely ill in 1988 and died in 1989. So, this significantly diverted me from mainstream Terrence Higgins Trust material. I was in a terrible, terrible mess. So, I believe I had resigned from all my official positions. I got better, I suppose, and got a job working at a day centre with young men who essentially sold sex, so that HIV was a major focus of our work there. But many of these young men required additional assistance, such as counselling, housing, and medical care. Thus, it was a step away from HIV, but it was not entirely eliminated. After that, I began a new relationship. Then, however, I became gravely ill, and my partner became gravely depressed. I never returned, except in honorary capacities, such as speaking at Terrence Higgins Trust fundraising dinners and other events.

NP: I’m really sorry to be evoking difficult memories.

TW: No, no, it’s all right, then. Don’t apologise; I’ve had to do this on television. This is significantly more difficult than telephone conversation. Then, I’ve recently completed filming for BBC One that will air in July, August, or September. In addition, we contributed significantly to the projects of Bishopsgate Institute and the British Library. Thus, there were quite a few oral history tapes. So, they had various “pioneers,” if you will, read the tapes and recordings that we had. It is very strange to meet the person who was supposed to be me, as they could not look more dissimilar if they tried.

NP: Then if it’s fine, if I could ask again about the era before 1988, did the attitude of activists from other countries influenced your pro sex stance towards AIDS or any other elements of your approach to HIV AIDS?

TW: I cannot recall the specifics, but there was a fairly widespread agreement with people we had contact with, for example in the Netherlands. Undeniably, if one examines the literature emanating from the Anglosphere, the United States, Australia, and Australasia, they were all sex positive. I suppose the information was presented with a bit more caution when less was understood. As I recall, we divided our recommendations into high-risk, medium-risk, and low-risk activities. Therefore, I would offer advice on anal intercourse. We and others with whom we had contact in English-speaking Australia sought to provide as much information as possible to the public. In a positive sense. Always when people must make their own decisions, which I continue to believe is the correct approach. Because there was a medical group within the Trust. They proposed an extremely cautious approach. But what came out in the end with the leaflets, which I hope you’ll see for yourself, is hopefully fairly sex-positive and primarily intended for people to understand the facts and devise their own strategies for dealing with the situation. The importance of condoms was emphasised. And we endeavoured to be very upbeat about the various ways to have great sex. We attempted to be very positive about sex by emphasising what could be done, but we made it clear that anal sex, especially without a condom, was extremely dangerous. We were uncertain about the dangers of oral sex. I cannot recall what was said, but it was somewhat ambiguous.

NP: So, speaking of the Dutch activists, Tony, did you liaise with them to discuss the approach of the European Communities or member countries towards AIDS treatment?

TW: Yes, we did. And I recall that on several occasions, they came to us from Amsterdam, where they had travelled. However, I cannot recall any further details about that. The European picture at the time was extremely fragmented and complex. Therefore, you would have likely seen 120 Beats Per Minute, a film about the French response at the time. In this country, the spread of the virus appeared to be more pronounced. Again, I believe this is partially due to the travel between here, the United States, Australia, etc. Although the virus originated in Africa, the major vector of its spread was the Western world. At the time, we were unaware of the full situation in Central Africa. We didn’t see it. It was not as closely monitored as it is now.

NP: Did you happen to have any links at all with activists in the broader region of the Global South, perhaps?

TW: No, not during my early years.

NP: And then in the case of Europe, Tony. Apart from the Netherlands, there were organizations like the Deutsche Aidshilfe in Germany. Did you have any contact with them?

TW: I think so, but I can’t remember that. I’m sorry, it was such a long time ago. And with my lover becoming ill and dying, everything got so complicated.

NP: I imagine.

TW: After George’s death in the summer of 1989, I recall travelling to the Soviet Union with a friend in March 1990. George was a very close friend of our Russian-speaking friend, and she sincerely desired to bring things to the attention of the Russian people. So, I recall spending a few weeks in late winter in Moscow and Leningrad, unofficially discussing the work of the Trust and what we were doing with gay people and health workers, and providing them with copies of leaflets to translate. I have no idea what came with that.

NP: But how was your interaction with them? Were they keen on discussing those issues with you?

TW: Yes. I mean that they were eager. It was similar to the early days of the epidemic in that gay individuals who felt they were directly in the firing line were eager to learn more. And medical personnel who could already observe the arrival of some patients and who had access to international publications. The doctors with whom I worked there viewed it as a very serious public health issue that needed to be addressed through support and education because no public health message containing the phrase “don’t do this” has ever been effective.

NP: And then, Tony, speaking of your transnational connections, were you involved at all at any of the international AIDS conferences that started?

TW: No, I didn’t go to any of them. I didn’t go to any. I did go to a meeting in New York. I remember I was invited and paid for by the New York Public Health Board, but it wasn’t one of the big international AIDS conferences as such. I was flown over there with a few other people so I could talk about what we what we were doing. But no, I didn’t, because those big AIDS conferences really got going after George had died in 89, I did my trip to Russia. However, then I had to find something else to do, which is why I became involved in this project in London to assist young men who sold sex. Then, both I and my new partner contracted AIDS and were hospitalised. Consequently, I never returned to all of that.

NP: Yes. Would you like to talk a little bit more about the New York meeting that you mentioned? About the agenda, the people that you met there, perhaps?

TW: I cannot recall a great deal. I’m sorry. There were many people present. It was more of an information exchange than a straightforward medical conference, in my opinion. The fact that I spent a week at the World Health Organization (W.H.O.) in Geneva was likely more intriguing. In addition to inviting me, they had also invited individuals from various regions of the world, including the Global South. Discussing what we are doing in our respective nations. And examining what was being done elsewhere and, in a sense, attempting to formulate policies with which the W.H.O could collaborate to provide global AIDS education and support. I had no idea what would result from that. Obviously, something resulted because the W.H.O. was extremely active and involved, but I cannot recall what. I recall that the New York conference consisted of a large number of people scattered throughout the city. And that was extremely intriguing. But the W.H.O. in Geneva consisted of a much smaller group of individuals from vastly different regions of the globe. In addition, the workplace was extremely engaging. And I cannot for the life of me recall the date.

NP: Don’t worry!

TW: 1990. 1991, I suppose.

NP: Do you perhaps remember whether this meeting in Geneva had any transformational impact on to you, any perceptions of yours that it changed?

TW: Beyond a much deeper understanding of problems faced in other parts of world, particularly for the Global South, I don’t remember.

NP: And then I know that both gained momentum from the late eighties on. But did you get involved at all in the Names Project or World AIDS Day events?

TW: No, I didn’t. I cannot recall the specifics, including the exact date. This received extensive publicity. Wembley Stadium concerts, for example. Tina Turner’s concert in addition to other concerts. Also George Michael. Princess Margaret, the sister of the Queen, attended a theatrical performance. This was the first direct involvement by a monarch. In terms of publicity, therefore, extremely beneficial. I was the director of these events and the stage productions.

NP: And about the World AIDS Day events, Tony: Did those events serve as a means of sharing information about what was going on in other countries in terms of issues, treatment and so on?

TW: Informally. Yes, absolutely. When conversing with individuals such as Elton John. These individuals who travel frequently for work. Thus, there was a great deal of informal conversation over coffee, drinks, or even a very nice lunch one day. However, I believe there were a large number of individuals in the Trust, as well as a variety of individuals who participated and spoke. Similarly to other organisations, the Trust was largely the result of people coming together. Therefore, I do not wish to give the impression that I did this, that, and the other because I was part of a team.

NP: Oh, sure, sure. Do you remember any person with whom you collaborated very closely as part of the team? Any interaction you would like to flag out?

TW: In the early days? Very significant was Rupert Whittaker, who was Terry Higgins’ partner. He spent a great deal of time in the States and I’m sure you could probably track him down. And Martyn Butler, who was Terry Higgins’ friend. He was helping put on benefits and distribute information. Nick Partridge and Janet Greene were incredibly talented full-time office employees.

NP: Tony, let me thank you very, very much. I have really learned a lot from our discussion. These are my questions. But is there anything that you would like to add? Anything that you find important?

TW: No, I can’t think of anything.

NP: Thank you very much indeed once again, Tony!

TW: You’re welcome. I’m most interested to keep in touch.

NP: Absolutely. I will. Thank you. Bye bye.

NP: Bye bye.


Interviewer: Nikolaos Papadogiannis.

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