Working with Young People
Although we had produced the "AIDS & Young People" booklet, we knew that in addition there needed to be really effective AIDS education in schools. We knew that it was not sufficient for young people to be provided with information, they also needed to be helped to develop the skills needed to translate this information into effective action which would protect their health and the health of other people.
The second phase of the HIV/AIDS Education & Young People project involved documenting the progress made in the provision of school based education on AIDS for young people. It also involved identifying areas where further resources and training were needed. It was found, amongst things, that most schools were introducing education on HIV/AIDS too late, and over a third of schools did not have a teacher responsible for coordinating HIV/AIDS education.
However, it is not only in schools that young people need to be offered a chance to discuss how AIDS affects their lives. A great many young people were meeting in a variety of non school environments such as your clubs, drop-in centres for young people and youth and community projects. Many of the adults working with young people in these environments had a willingness to help young people understand how AIDS affected their lives.
So in 1988 we started to develop the teaching pack "AIDS - Working with Young People" which used and promoted a participatory style of health education. It was published by AVERT in 1990. Together with a background text the pack involved using exercises, group work, open discussion techniques, games and role plays. This was to help young people clarify what they already knew and felt about HIV & AIDS, and to consider the consequences of this information in the relationships with other people.
Widely disseminated the pack was used in many different countries and with many different groups of young people. When we could we sold the pack, but when we couldn't and the pack was much needed we gave it away for free. An example of this is when we sent a dozen copies to South Africa for use by community organisations working in townships.
As it was so successful a second version was later developed for use in schools. The Norwegian government so liked it that they translated it into Norwegian so that they could use it in their schools. The third and final phase of the HIV/AIDS Education & Young People project at Christ Church College Canterbury was completed in 1992. The result was a comprehensive guide to HIV/AIDS education in secondary schools for classroom teachers, health education co-ordinators and other concerned with the teaching of AIDS in secondary schools. The Times Education Supplement said about this book:
"This book is a must for all secondary schools .. and anyone else with an interest in seeing that our young people get the best education about HIV/AIDS that we can given them"
AIDS Related Dementia
After the success of the "AIDS & Childbirth" and "AIDS & Young People" booklets, we decided to produce some booklets on the medical aspects of HIV disease. These booklets would primarily be for HIV positive people but we also hoped that they would be helpful for health professionals and carers.
We did at the time write to some pharmaceutical companies asking for help with the production costs of the booklets. They weren't prepared to help. But we did in any case then decide that AVERT wouldn't accept money from any company, or indeed individual, where accepting the money might affect AVERT's reputation and/or make us appear less independent than we actually were.
The first booklet was, rather surprisingly looking back on it, on "AIDS related Dementia", a subject of great concern to people living with HIV. As with all the medical booklets I had to find a doctor willing to write the booklet. I then usually edited it so that people with limited medical knowledge could understand it. Written by Dr Agnes Kocsis of St. Mary's hopsital, the "AIDS Related Dementia" booklet was first printed in May 1989.
Medical Treatment & other booklets
In 1990 we produced two further booklets in our rapidly developing publications program. The first was a booklet on the "Medical Treatment of HIV Disease". Initially written by Dr Susie Forster at St. Mary's Hospital, Paddington, the booklet was to quickly go through a number of different editions as there began to be rapid changes in treatment. We also regularly had to change authors as doctors became too busy to write, or they no longer had sufficient up to date information themselves. Between 1990 and 1996 we printed and distributed nearly 90,000 copies of the booklet.
In 1990 we also produced the first edition of our "Women Talking about AIDS" booklet. At the time almost all of the people who publicly talked about being HIV positive were men, and almost the only time that women were talked about in relation to HIV was regarding pregnancy. I wanted to change that, and with the help of the late Tamsin Wilton, who was known for her writing on feminist issues, we set about contacting women who were prepared to tell us their stories of how HIV/AIDS had affected them. In the introduction to the booklet we explained that:
"AIDS has become the leading cause of death for women aged between 20 and 40 living in cities of Western Europe, the United States, and sub-Saharan Africa"
To some people in the UK who perceived AIDS as a disease that still only affected gay men, this was an astonishing statistics.
A particularly moving account in the booklet was "Ruth's poem". Widely distributed at the time, it was a poem written by an HIV positive women about the difficulty of talking to her child about HIV.
In total by the end of 1991 AVERT had produced and distributed more than one million booklets.
The San Francisco Conference 1990
Since the start of AVERT we had funded many medical people to attend conferences. I began to realise how much people learnt, and how much of it could be understood by a lay person with limited medical knowledge. Major AIDS conferences were being held every year as new information about AIDS was being discovered so quickly. So I decided to attend the San Francisco conference in 1990.
There were a few practicalities such as who was to look after our children. But the ever supportive Pete volunteered to be the one who stayed at home whilst I went to the conference. This is perhaps the place to say that without Pete, not only would AVERT never have started. But it woulld not have achieved even a fraction of what it has. If he had not been there, supporting me as well as often providing practical help and advice. He was also for twenty five years the chairman of the trustees.
So I went to the conference and the amount I learnt and the atmosphere was truly amazing. there was also a plan to have a march. This was to be a peaceful march of thousands of people to protest that not enough was being done by the authorities. This was both in terms of duning for research and support for those living with HIV. But the authorities had vetoed the march, fearing that it would turn violent. So they banned it, and the San Francisco police were out in force, many on horseback.
So it was the end of the conference and it was the final session. The speakers on the platform said that they were going to march. They invited the audience to march with them. As the conference speakers turned and walked out of the hall, almost everyone there, including myself went with them. It was scary confronting the police on horseback. But as we reached the police lines they parted and we walked through and held our march.
It was also at the San Francisco conference that I saw some of the panels from the AIDS quilt for the first time. I was to wear the badge on a number of occasions afterwards. Because, at that stage of the epidemic, when you saw the panels you really did understand.
A gift of £3 million
As Pete and I got more involved in AIDS work, we felt that we wanted to concentrate our charitable efforts entirely on AIDS. We decided therefore to give the whole of the rest of our charitable money, some £3 million to AVERT. We knew when we made the gift that for tax reasons we would not be able to be paid if we worked for AVERT, but we were prepared to remain as volunteers.
The gift did not mean that AVERT could stop fundraising, because the money was to be kept as an endowment with the income available to be used by the charity. We did not make it a legal requirement that it was kept as an endowment, just in case there was one day a good reason for a small part of it to be spent. But we hoped that the great majority of the money would be kept as an endowment as it was intended. It would provide AVERT with financial stability and it would mean that we could fund projects that it would otherwise be extremely difficult to do such as work concerned with prisoners.
HIV infection amongst prisoners
It was not just medical research but also social research that AVERT was involved with, gaining a better understanding of people's behaviour and circumstances, and how this might or might not put them at risk of HIV infection. Prisons and prisoners were a regular topic of conversation and in 1989 AVERT funded a small study looking at injecting drug use amongst prison inmates in Saughton prison in Scotland.
However, when it came to prisons in England we were always told that the Home Office would not allow any researchers to go into prisons. Then in February 1989 I attended the third conference on the "Social Aspects of AIDS" and I was on a panel with other funding bodies, and yet again the subject of prisons came up. Well:
"if you can't interview people in prison why don't you interview people who have just come out of prison?"
was my response to yet another researcher talking about a lack of Home Office consent.
The following day I got a phone call from a researcher, Kate Dolan, and this led to AVERT in 1989 funding a study to investigate the risk of HIV infection in prisons in England. Four hundred and fifty ex-prisoners throughout England were interviewed, and were asked about their behaviour before, during and after imprisonment.
An HIV prevalence rate of 10 per cent was found for the drug injectors in the study, and it was also found that there were high levels of drug use in prison, and high levels of the sharing of injecting equipment. The project report received considerable attention in the media, in Parliament, and amongst practioners and researchers. In 1992 a major conference was held on the subject of "Prisons, HIV & AIDS". There were also a number of papers published in such journals as the BMJ and AIDS Care.
Following on from this work, in 1993 we started some further work looking specifically at drug use amongst prisoners. This study produced detailed qualitative information on drug use and injecting practices within prison and it identified opportunities for, and obstacles to, the development of appropriate policies and practices to prevent the spread of HIV within prisons, and to reduce other problems related to drug use.
Compulsory testing of prisoners was definitely not one of the appropriate policies identified in the study and we were therefore dismayed when just a few weeks after copies of our report had been sent to the Home Office, the following was said by John Major:
There will also be a major blitz on drugs in prisons. I want people to come out of prison reformed, not sucked into a sub-culture of drugs. We must choke off the supply of drugs to prisons... New powers in the Criminal Justice Bill will allow compulsory drugs testing of inmates"
It was subsequently to be claimed by a number of people, that compulsory testing actually encouraged inmates to change drugs from Cannabis to Heroin and Crack, as Cannabis stayed in your body for the longest period of time. It was therefore most likely to ggive a positive result to a compulsory drugs test.
In addition to the two main reports published by AVERT, there were many other published papers, as well as significant coverage in the media as a result of AVERT's two projects concerning prisoners, HIV & AIDS, and related areas such as drug use. And although at the time it didn't appear to progress either relevant policies or education, a number of comments made in subsequent years led us to believe that these projects might have had a greater impact than we at first thought.
The situation regarding HIV and prisoners was also for a number of years an important part of AVERT's advocacy work. We spoke out about this whenever we got the opportunity. This included the time when there was an actual outbreak of HIV infection at Glenochil prison.
Safer Sex Education with drug users
It was in late 1992 that I unexpectedly got a phone call from the Department of Health asking if we would like to carry out some work with drug users involving safer sex education. The reason that this was so surprising is that whenever in the past we had asked the Department of Health for funding they had turned us down. It seems that someone at the Department had suddenly reaslised that drug users not only injected drugs but they also had sex, and that it would help if it was safer sex! Having heard about some of our earlier project work they thought that we might be the people to help. We did indeed then carry out this project w ith funding from them, producing a useful training pack for people working in drug services.
Young Gay Men
Gay and bisexual men continued to be the group most at risk of contracting HIV infection in the UK. There was starting to be considerable work looking at the behaviour of adult gay men. However, there had been an alarmingly small number of HIV prevention initiatives targeting young gay men.
So in 1993 we funded a study looking at the HIV prevention needs of young gay men. This included those who had come out to very few people, and who as a result were not in contact with any of the limited servies for young gay people. The research consisted of a two year longitudinal interview study of sixty young men living in two contrasting areas of the UK, Norfolk and Manchester.
The words of the young men vividly described some of the difficulties they faced.
"It was just complete terror that someone would find out, that people would be able to tell. I was very paranoid - even in my diary - I wouldn't even write it in there." Phil
A major research report from the project was published by AVERT but it was to be the words of the young men themselves that were to have such a major and last impact.
The Young Gay Men talking booklet
This booklet was one of the most significant produced by AVERT and the title "Young Gay Men Talking" seemed to make it possible for it to be picked up and read by a very wide range of people whether gay or straight. First produced in 1995 it was made available and avidly read in some of the most unlikely places.
An important aspect of the booklet was that what the young men said was put in context. For example, the difficulties they had in "coming out" to their parents. The booklet was also used in many different ways, such as being used by health professionals to help with discussion about the needs of young gay men, and it was also used by teachers to encourage discussion in the classroom.
For what I thought was a specialist booklet, the distribution figures were amazing, with more than 130,000 copies distributed. Also, although the booklet design was updated, the words largely stayed the same, and stood the test of time remarkably well. Fifteen years after it was first produced the content of the booklet was still available, largely unchanged, on the avert.org website where it was being read by several hundred people each week. And although all the young gay men were in the UK, their words were now read and appreciated by people , both gay and straight in many other countries in the world.
The booklet was produced at the time of section 28, the part of the Local Government Act 1988, that stated that a local authority:
"shall not intentionally promote homosexuality or publish material with the intention of promoting homosexuality"
or "promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship"
Of course Section 28, which was later repealed, never applied to health education in schools. However, such was the fear of it, that for many years it prevented any discussion in the classroom, or almost any issues relating to gay people. The issue of sex education in schools was also further complicated by the Education Act 1993 and circular 5/94 on Sex Education in Schools, which amongst other things said that:
"any sex education must be provided in such a manner as to encourage young people to have regard to moral considerations and the value of family life"
In 1997 AVERT was to develop and publish the book "Talking about Homosexuality in the Secondary School", to further encourage discussion of the issue in the classroom. One of the authors of the book was Simon Forrest, who had helped with other AVERT publications, and who later on was to become a trustee of AVERT.
You might like to read about how AVERT's work was affected by the start of the internet
This page was last updated in April 2020
Author Annabel Kanabus