Of victims and heroes

In a day like this, where scientific advances and social tolerance towards people living with HIV/AIDS have improved their life expectations, improved the solidarity and partly destroyed stigmatisation, it is time to remember the early victims looking back at how the pioneers of the fight against the virus committed their efforts to combat prejudices and help those who faced a new unknown and underserved death full of the most possible negative connotations at the time.

Talkingdrugs has interviewed Liz Day, a social worker during the eighties in the UK, but now a systemic psychotherapist, about her role supporting children whose parents were going to die soon and other members of the community who lost their lives or simply were at risk.

TD- Liz, the first question seems inevitable: What made you choose that line of work when there was such a general panic about AIDS?

In 1985 I was studying social work at Croydon College. I was also volunteering with PACE the counselling service which was based at the London Lesbian and Gay Centre in Cowcross Street. This was in the early days of HIV. We were a small group of counsellors and we decided we needed to have some training on HIV. Anthony Hillin, who was the PACE worker (there was only one in those days) provided the training.  This made me decide to do one of my college assignments on HIV. I wrote to all the London Boroughs and some of the big authorities outside London asking them what training they were providing for social work staff. There was very little training going on and some of the replies were truly shocking; both because of their prejudice and their ignorance. I interviewed Jim from Frontliners who kindly came to my flat and spent an hour or two with me. From the outset I believed that knowledge and information were the main ways of combating fear and prejudice. When I began my first social work job in 1987 I asked the training department what they were doing about HIV. Inevitably, I got asked to help with the training; it was mostly home helps in those days and we gave out aprons and gloves at the same time as we talked about safer sex! The following year saw the first awards of money under the AIDS Support Grant Scheme and I became one of the cohort of original HIV coordinators. People like Nick Partridge and Lisa Power were there too. It really was like being part of a war.

TD- How was preparing children for their parent’s death and explaining to them that despite all the bad things they could hear their parents were dying of something beyond moral judgement?

Oh that’s a difficult one. Most of the families found it very difficult to even speak about HIV. It was not unusual to have husbands and wives who had not disclosed their status to one another. They refused to have their children tested. Sisters were infected but each did not want the other to know as they thought they would turn against them; we had to arrange for them to attend clinic on different days. So talking to children was completely taboo. Most children did not know what their parents had died from; they had often been told something that wasn’t even a half truth. It was like the elephant in the room. Most of the families were African, their communities were completely decimated, but very few people talked about HIV. The hardest thing I had to do was tell young people that the reason they were taking so many drugs was that they were HIV positive and that they had caught the virus from their mothers; their mothers were usually already dead. I developed a group programme for African children affected by HIV but we had to promise not to talk about HIV overtly.

TD- I suppose you have come across all sort of people, but let me ask you about drug users to find out what were their general thoughts about dying. Was it perceived as a drastic end of the road as the media wanted to portray it? Or was it seen as something unexpected from which people who would have liked to turn back could not actually do? Or even as something that users would not have given up ever? 

It was hard to engage drug users in our services. But that was true of other groups as well. There was quite a lot of blame in the early days, which made it difficult to bring people together.  People with haemophilia blamed gay men and drug users for infecting the blood supply. Africans didn’t want to be seen in a group with gay men. Gay men wanted a gay friendly service. Drug users wanted to be able to smoke. Most drug users preferred to use services like Mainliners where they felt they would be understood. 

TD- How was the information about harm minimisation disseminated?

We worked closely with the local drug projects, produced leaflets and persuaded chemists to provide needle exchange schemes. Looking back on it, I think we made some big mistakes but we didn’t know it at the time. The advice about cleaning needles and syringes was fine for HIV, which is a very fragile virus, but we didn’t know about Hepatitis C (it didn’t even have a name then). As long as people used needle exchanges it was fine but the information about washing in water and detergent just wasn’t good enough for hep C.

TD- I know this is going to be a controversial question but not long before Michael Foucault died of an AIDS related complication he said that AIDS was another name that people used to refer to lack of moral. Have you come across that sort of attitude among the people you dealt with? If so have you also met people who faced death with a non-regret attitude? 

I have heard prejudiced and ignorant people refer to AIDS as a punishment. People make choices in their lives and take risks. In the eighties people took all the usual risks with drugs and sex, most of them didn’t know about HIV. It’s all more complicated than that. What choices does a sex worker who needs to make money have? It depends what power they have to ask clients to use a condom, to keep the money themselves, to be in a safe working environment.

TD- Going back to drug users and your experience working with women with substance misuse problems in hostels, How AIDS/HIV affected their chances to recover and resettlement in the community? And how was the care they received in prison?

I worked in a women’s bail hostel for five years but that was from 1980 – 1985, before we really knew about HIV. It was just beginning when I left and we were thinking about how to deal with blood and body fluids. I am sure it must have been pretty bad as I remember the fuss that was made when we had a woman with Hep B. However, a lot of the innovative work that was done on education and prevention in those early days came from male prison officers. There were pilot projects to provide prisoners with condoms and injecting equipment but they came up against the problem of accepting that prisoners had sex (which was forbidden) and had access to drugs (which the authorities denied happened).

TD- Continuing with gender issues, what were the information, treatment and care available for sex worker in those early days? 

Because HIV services developed in sexual health clinics people were very aware that sex workers needed user friendly services. My local clinic had special drop in sessions for sex workers. We had an outreach worker who visited sex worker flats, provided free condoms and lube and tried get people into education. There were outreach sessions in public sex environments as well.

TD- And finally if you look back and reflect on all the efforts that people like you put in the first place would you agree that there is a place for hope and things are increasingly changing for the better? 

Actually, I think what changed things was the advent of viable treatment options. Suddenly people who had retired and made plans for their funerals found they could go back to work. One of the difficulties that I saw was that some people, who like me had worked in the field for 15 years, were still acting as if we were in a war zone. There had to be a shift in strategy, people were burned out from fighting all the time. HIV is now a chronic disease which needs a long term approach. There will always be prejudice and ignorance but it is completely unacceptable.

Thank you, Liz