Safety in Numbers

Chapter 5

The Terrence Higgins Trust - a case study

The de-gaying of a gay-founded AIDS organisation can be quite thoroughly documented in the example of the Terrence Higgins Trust in London. The purpose of focusing on the Trust here is not to single it out as a particularly culpable organisation, since the neglect of safer sex education for gay men in the latter 1980s occurred in both statutory and voluntary agencies throughout the UK and the much of the rest of the industrialised world; indeed, in many respects the Trust is one of the least reprehensible of agencies, in that both in the mid-1980s and the early 1990s it has provided undeniably important prevention services for gay and bisexual men. However, the Trust is the organisation with which the author is most familiar, and for which the most documentation is available.

The Trust was founded in 1982 by friends of Terry Higgins, one of the first British gay men to die with AIDS. Following the screening of the Horizon television documentary "Killer in the Village" in 1983 the Trust was re-established with an influx of volunteers from London Gay Switchboard, who continued to swell the Trust's volunteer base throughout the early years. By the end of 1983 the Trust produced its first leaflets, and its telephone helpline opened on St Valentine's Day in 1984. (123) In September 1985 the Trust received its first government grant of �35,000, to fund the helpline and the production of new leaflets. (124)

During the mid 1980s the Trust produced an impressive body of educational work for gay men. It produced its first advice for gay men, in conjunction with the Gay Medical Association, in Autumn 1983. The leaflet More Facts for Gay Men was first published in late 1984; over a two month period some 20,000 leaflets were distributed, largely through STD clinics. (125) More Facts for Gay Men was revised and reissued in April 1985. In late 1985 the Trust launched a campaign to popularise the safety pin as a symbol to be worn by people who might not want to talk about AIDS, but were only interested in having safer sex; (126) safety pins subsequently appeared on a series of fliers entitled Safer sex - don't dream it... do it! featuring a photograph borrowed from an Australian safer sex poster and advice on using condoms. Also in 1985 the Trust was "giving away T-shirts with 'Terrence Higgins Trust Volunteer' emblazoned across the chest, on condition that they are worn in gay venues and that the wearers, who are specially trained, will promise to answer questions on safer sex or HTLV-3 infection". (127) In 1986 the popular Sex... leaflet providing updated safer sex advice in straightforward language and erotic drawings and cartoons was published. Adverts and articles in the gay press and soft-porn magazines such as Vulcan and Him told gay men how they could obtain the leaflets through the post. Throughout this period the Trust arranged a series of two-and-a-half hour open discussions with titles such as Safer sex... an acceptable alternative? to provide gay men with a forum at which to discuss and come to terms with the new realities with other gay men. Oher 'roadshow' events aimed to promoted safer sex by talking face-to-face and giving away condoms, posters and leaflets. (128) Even materials produced for the population at large, such as the leaflet issued in conjunction with Thames Television in October 1986, at this time explained in straight-forward and factual terms that "While anyone could be infected, only people in [high risk] groups are liable to have been exposed to the infection". (129) If anything, this leaflet went further then most in stressing the very limited spread of the epidemic and differentiating between providing information to 'the public' and to those 'at risk'; in a foreword, Professor Michael Adler said bluntly that "AIDS has been blown out of all proportion by the media. It is a rare disease... It is very important that the public realise that they are not at risk...". (130)

Tony Whitehead, chairman of the Steering Committee and the Board of Directors of the Trust between 1983 and 1988 has suggested that "much of the changes observed in [the sexual behaviour of] gay men in 1986 and 1987 can be attributed to the early work of [London Lesbian and Gay] Switchboard, Terrence Higgins Trust, the Gay Medical Association and the gay press". (131) Whitehead argued that the Trust's early work was so successful for a number of reasons which were all intrinsically rooted in the gay community:

 

  1. We were a gay male organisation. We were not perceiving abstract threats to other people. We were faced with very real risks to ourselves and the people we cared about.
  2. We lacked professional skills. On the one hand there were some harmful consequences but on the other hand we didn't know about consultation, pilot runs or evaluation. We simply sat down and did the work.
  3. As gay men, most of us had been activists, we were familiar with each other and we knew people involved in other gay organisations and the gay press. This was a great advantage.
  4. Our approach was informed by our awareness of the gay political scene and our concepts about ethics. We wanted to empower gay men and not proscribe lists of do's or don'ts. The resultant work was strong on empowerment and relatively sex positive. (132)

By 1986 the Terrence Higgins Trust had achieved a prominent place among the various policy lobbies operating on the national level. It remained "the only central source of education, comfort and indeed hope for many either suffering with or concerned about AIDS". (133) It had firm contacts with Sir Donald Acheson, the chief medical officer, and was represented on a 'social' advisory group to the Department of Health. It enjoyed good communications with doctors at the Communicable Diseases Surveillance Centre (CDSC). As Whitehead has described, the Trust was subject to enormous demands:

 

We were called upon by the medical community for medical information, for information about the care of people with AIDS. We were also called upon to meet the needs of the other parts of society and develop wide-reaching responses to diverse needs for information on prevention and other kinds of support. (134)

All this put the Trust in a relatively powerful position. However, the agenda that united all the strands of the emergent 'gay/medical/scientific policy community' at this time was "a stress on the need for urgent action and for public education to highlight the heterosexual nature of the disease rather than the 'gay plague' angle of the popular press". (135) According to Zoe Schramm-Evans, "the price of [the Trust's] power was a high one B the public and sometimes private denial of the gay essence of the Trust". (136)

Schramm-Evans goes as far as crediting the Terrence Higgins Trust with inspiring the government approach which resulted in the 1986 advertising campaign run by the Department of Health and Social Security B that 'everyone' was at risk. Moreover, she argues that "few people in the Trust who had any knowledge of the political epidemiology (sic) of AIDS believed that it would ever spread significantly into the heterosexual population" and that its public face was entirely designed to protect the gay community at a time of very considerable public and political opprobrium. These rather extreme conclusions are disputed by others involved with the Trust at the time. (137) Indeed, tensions between the Trust and the government were becoming increasingly clear, as Tony Whitehead denounced as "an insult" the lack of funding for the Trust or other "gay community based organisations" in the package of measures announced by Social Services Secretary in November 1985, and called for the implementation of a public education campaign targeting gay men and drug users in advance of that planned for the general public. (138) The Trust was not consulted in the planning of the Don't die of ignorance campaign and, like London Lesbian and Gay Switchboard, it was not warned that the number of its telephone helpline, which had only four lines, was to be listed in the leaflet sent to 23 million households in January 1987; consequently new lines had to be installed as up to 400 callers per minute jammed the local exchange. (139) What's more, it is highly unlikely that the Thatcher government, of all governments, would form policy on the basis of the views of an organisation founded by and publicly identified with gay men. Rather, the Trust's was just one voice in a powerful consensus which included leading epidemiologists and clinicians, as reflected in publications such as the Cox Report of 1988 which predicted that between 2,500 and 12,000 new cases of AIDS would be diagnosed in 1992 (the true figure turned out to be 1,492).

Substantial internal changes took place in the Terrence Higgins Trust during the second half of the 1980s. According to Whitehead, "In the early 1980s THT spent about 80% of its health education budget on gay men, by 1986 that was about 8%... New priorities emerged. 'We must fulfil all public needs, be seen as responsible recipients of Government funds etc'." (140) Those government funds, which had stabilised at just short of half a million pounds per year by the end of the decade, allowed the Trust to grow, employing more staff, expanding its services to people with HIV, moving to new premises, producing a wider range of leaflets, helping other local AIDS groups to establish themselves and so on. But in this process the Trust may have sacrificed many of the qualities which it originally possessed as a gay community-based and identified organisation, from which its ability to work effectively with gay men were derived. As Adam Carr has argued, "...no organization can effectively influence and lead the gay community if it is not firmly based, and seen to be firmly based, in that community". (141) Whitehead, in common with others, has described how "during the first years of the Trust's existence the radicals held power. As they left, burnt out or died, then the balance of power shifted towards conservatives". (142) Meurig Horton, a longtime volunter at the Trust, has described a growing sense of division and tension between rank-and-file health education activists, who were keen to see the Trust maintain frank, sex-positive safer sex campaigns for gay men, and directors, managers and staff whose view of the organisation was rooted in the framework of conventional charities such as Age Concern. (143) As the Trust became increasingly insitutionalised, and as the growing demand for its direct services to people living with HIV meant that it was becoming more and more similar to statutory social service agencies, its desire to be perceived as 'respectable' also grew. According to Horton, by the late 1980s the Terrence Higgins Trust was "a timid organisation full of conservative queers" (144); Simon Watney, after attending a Trust directors' meeting in 1987 "virtually to beg for funds for gay men=s health education", (145) angrily parodied it as:

 

full of middle-aged Thatcherite queers taking two hours to decide whether they should give another AIDS help-line �200 or �300. A camp, Fifties, Kenneth Williams voice: "We don't want the Government to think we're just a bunch of screaming queens, do we?" ... Trying to please everyone - the National Health Service, the DHSS [Department of Health and Social Security], the DES [Department of Education and Science], the Government, all political parties, gays, non-gays ... Helping people die, with no idea how they might have lived, no idea what I'm talking about now, reading this page with blind incomprehension and shaking their heads: "We can't change the world dearrr, can we?" (146)

As early as 1984 there were accusations from others that "the Terrence Higgins Trust was overly identified with the gay community". (147) In 1987 the Trust featured prominently in a Sunday Telegraph article which asked "Is there a gay conspiracy?" (148) and from the late 1980s was the subject of a series of attacks by far-right groups such as Family and Youth Concern and the Conservative Family Campaign, who reprinted and quoted from a number of the Trust's earlier publications for gay men. (149) Faced with such criticism, there were real fears that government funding would be withdrawn, and that the survival of the organisation was genuinely in doubt. (150) Such attacks thus simply reinforced the conviction of those conservative gay men within the organisation that any frank association between homosexuality and the Trust could only damage the organisation, and prevent the provision of effective services to people with HIV and AIDS.

This left the Trust with a schizophrenic attitude to its origins within the gay community. In an interview in 1991 the Trust's (then) Chief Executive Naomi Wayne declared "I don't think this organisation has to excuse where it came from...", while at the same time claiming that "AIDS is not a gay or even a male problem... As long as Aids is ghettoised as gay, it will not be taken seriously". (151 According to one of its counsellors, interviewed by a newspaper in 1992, the organisation had been "tarnished by the gay label". (152) Just as the de-gayed view of the epidemic saw AIDS as initially a gay problem which had now moved on to affect everyone else (rather than having simply expanded but with gay men still right at the epicentre), so the Trust appeared to view itself as an initially gay organisation which had now turned into something else entirely. So, for example, it routinely objected to being described as a gay organisation, as opposed to an AIDS organisation. This is a message whose only purpose can be to reassure heterosexuals about the 'respectability' of the organisation. To gay men, it is an unwelcoming message suggesting denial and disregard.

During the period from 1987 to 1991, in which the effects of the de-gaying of AIDS were most widespread and apparent, the Terrence Higgins Trust undertook virtually no new activities targeting gay men. The main exception was a set of six posters bearing black-and-white homoerotic photos and the slogan Safer Sex - Keep It Up!, which were translated from Dutch originals in December 1988; however, these were viewed as a low-cost crisis intervention measure by health education volunteers. (153) The only other new publication for gay men was one of the six posters entitled Get Set for Safer Sex produced in 1990, which carried a photograph of two androgynous-looking men kissing, and the slogan No Risk In A Kiss. While the Trust's direct services had expanded to meet a growing demand from people living with HIV and AIDS, there remained only one health education post; since the organisation now viewed itself as a generalist AIDS organisation, rather than one concentrating particularly on gay men, that worker's time was spent on projects for other population groups which the Trust had not previously targeted. According to a later manager of Education and Information at the Trust, "there is no doubt that during this time work with gay men suffered". (154)

Nevertheless, there are indications that the Department of Health still believed that the Trust's history placed it in a strong position to undertake safer sex activities which would be well-received by gay and bisexual men. Tony Whitehead recalls that the Department was always perfectly clear that it wanted to maintain some distance between its money and the most explicit gay safer sex education, but that that did not mean that the money could not be spent on much-needed gay men=s campaigns. (155) If anything, the Government seems to have become less shy about its willingness to support the Trust's safer sex initiatives for gay men; for example, in a November 1988 press release, the Department of Health explained that its grant of �400,000 for the forthcoming financial year was "intended in particular to help develop the Trust's health education work with drug users and with homosexual and bisexual men", as well as other services. (156) This was only three months before the first Health Education Authority advertisements were published in the gay press, and suggests that the Department considered the Trust would continue to have an important role to play in the spectrum of HIV prevention services for gay men. In the event, however, the only Terrence Higgins Trust expenditure on novel gay safer sex activities during 1989-1990 appears to have been the pre-trialling of a draft booklet, which was eventually to inform the development of the Tales of Gay Sex campaign in 1991.

In late 1990 the Trust's health education team was at last expanded, and its first staff post responsible specifically for work with gay men was appointed. (157) New resources such as the Tales of Gay Sex photostory leaflets, the leaflet Safer Sex for Gay Men and the groundbreaking video The Gay Man's Guide to Safer Sex were produced. In 1992 the Trust's Gay Men's Health Education Group collaborated with the National AIDS Manual, North-West Thames Regional Health Authority and Gay Men Fighting AIDS to produce a critical report documenting the extent of the de-gaying of statutory AIDS prevention services throughout the UK. (158) While this re-commitment to the interests of gay men was of course welcome, it remains regrettable that similar efforts were not sustained during the late 1980s. Commenting on the effects of the de-gaying of AIDS, Tony Whitehead concluded, "I think on the one hand where the Terrence Higgins Trust accepts so much credit, they must also accept some responsibility for where things have gone wrong". (159)