Join Ann Richardson as she takes a look what it was like to live with AIDS or HIV in the dark days of the 1990s @CelebratingGran

Living with AIDS or HIV

 in the dark days of the 1990s

By Ann Richardson

Myths?  Definitely not.  Legends? No. Books?  Yes, for certain. And a very powerful one at that.

I am not a historian or a even a writer of historical fiction. I write books that are not easily squeezed into any genre. They are sometimes called ‘narrative non-fiction’, but I don’t much like the term. They are based on interviews with people talking about their lives and are best described as like a TV documentary, but in words.

So what does this have to do with history? Well, if you live long enough, what you lived through when you were younger becomes ‘contemporary history’. And nearly thirty years ago, in the early 1990s, there was a very real crisis in the lives of millions of people across the world – the rise and spread of HIV/AIDS.

Now, so many years later, this is seen to be almost like any other chronic disease, with those diagnosed being able to expect a normal life span. Back then, it was a different story. Seen as a kind of twentieth century plague, it had everyone terrified. For the individual afflicted, it caused a lot of pain and other physical and mental problems, followed by almost certain death. There was no cure.

Because of the stigma attached to the disease, people avoided talking about it. It was thought to be caught, primarily, from the transmission of bodily fluids via blood or sperm, but many lived in fear of accidental contagion.

And the data were frightening: millions died over a short number of years – not just in faraway places, but nearby. It took an enormous toll of mostly young people. Even writing about it now makes me tremble slightly.

Wise Before their Time is a book about a small number of people living with AIDS, who happened to be attending an international conference in London in 1991. It is based on interviews with 21 people – and written material submitted by 23 others –  spanning every continent.  It allows them to tell their stories in their own words. I felt the statistics being spouted at the time were so overwhelming, there was a need to see the human side.

These men and women talk about how they first learned of their diagnosis, the difficulties of telling their partners, friends and family and the problems of keeping in work and active. Indeed, they explore the many challenges of living with a stigmatising condition, often with numerous friends in the same situation and knowing that they did not have long to live. For the most part, perhaps in part because many were active in their local communities, they were immensely dignified and strong, hence the title of the book.

Sir Ian McKellen kindly offered to write a Foreword, in which he wrote that these stories were “as powerful as any great classic of fiction”.  But the power rests, in part, from the fact that it is not fiction. It is all true. Readers will come away with the real understanding of what it was like to live through this terrible time in living memory.

How did I come to write the book?  My day-to-day job was a researcher and writer on health issues – and this brought me in touch with many problems of the day. In 1989, I met Dietmar Bolle, a young (early thirties) gay German man, who had been living with AIDS for five years and was a busy AIDS activist. We had little in common (I was in my early fifties, happily married and not an activist at all), but somehow in the way that can sometimes happen, we became close friends.   

At that time, I had no particular interest in AIDS – nor, indeed, in issues surrounding dying, although I subsequently wrote another book about people providing end-of-life care (Life in a Hospice).  But when I learned that Dietmar was the principal organiser of a conference – and had asked those attending to send in their ‘stories’ with their application, I was hooked. 

I immediately saw that this could be lead to a load of fascinating stories, especially if supplemented by personal interviews. Here were  people living with the most feared disease of the day, all coming together to talk and learn. It would be a challenge to undertake and would prove a valuable way to humanise this dreadful condition.

Wise Before their Time is the result. Published by HarperCollins in 1992 (Dietmar did not live to see it),  it sold well at the time, but eventually fell by the wayside. I took back the rights from the publisher and re-launched it with a new cover and short introduction in 2017, primarily for its historical interest.

Here is one story, to give the flavour. As with the rest of the book, it is written in the present tense, but one has to assume that Danny died within a short time after the interview – along with others I tried to trace some years later.

Danny

Danny is thirty-two and from Northern Ireland. He is currently unemployed, having just spent four years at college studying theology. He had hoped to be ordained as an Anglican priest, but his ordination was deferred on grounds of his homosexuality. He is now seeking to have this decision overturned. He lives on his own.

Danny's diagnosis is very recent:

I was diagnosed HIV on the 13th December 1990. The reason I went was I'd got a swollen gland under my armpit. I discovered that at Easter of last year and it was still there in December. When they took the test, it was a week's wait. Those seven days were like an eternity.

I remember it exactly, probably always will. The doctor said to me, 'As you know, Danny, we took some blood.' I said, 'Yes, I was here when you took it.' And he said, 'Well, we had the results back and I'm very sorry to tell you that it's highly probable that you are positive.' It was as if somebody kicked me in the balls. Then I thought, hang on, what do you mean 'highly probable'?

This was my body we were talking about. It took me three times saying I wanted to know what's going on before he said, 'Okay, Danny, the results of the first test are positive.' Although I'd more or less convinced myself that it was possible I was positive, it didn't really prepare me for hearing those words. I'd lived in hope that the result of the test would be negative.

I went with a friend, a close woman friend, for the results. I went out and got her and the poor woman, she knew right away what had been said. We sat and talked to the doctor. Or she talked and I just gazed into oblivion.

I went back to her place that night, to her and her partner. I intended to get totally drunk, but no matter how many drinks I downed, I couldn't quite make that stage. Who? Why? What's going to happen? Who can I tell? Why me? And even, 'Hang on a second, they got my test mixed up with somebody else. That's what it is, some other poor sod has been told he's negative and in fact he's positive.' And I thought, no, get a grip on yourself, that doesn't happen.

My health has been fine. I'm healthier now than I have been for the last two years. The chances are that I'd been living with HIV for at least two years, as my weight had dropped then, over three stone in four months. I did go for a test at that time – and that proved negative. They said to come back in three months, because I had put myself at risk, but I was so relieved I didn't bother going back.

One difficult aspect of learning about HIV is telling other people – friends, partners, parents and so forth:

The first people I told was the faculty at my college, because they were people I trusted. They'd seen me through the ordination being put off and stood by me. We disagreed very strongly, theologically, with God's view of sexuality, but that didn't matter. When I needed their support they were there. They were fantastic. I couldn't have wished for more from anyone, both faculty and fellow students.

When I was first diagnosed, I was in a relationship with another bloke. We'd been together for a number of months. And although we practised safe sex, the first thought that came into my head was have I put him at risk? He wasn't around for a few weeks. When I eventually told him, all he did was get up and just hold me for about twenty minutes, which was fantastic.

We're no longer together. I don't think it was anything to do with the HIV, but it might have been. The important thing for me was his immediate reaction – wanting to support and comfort and hold me. He didn't get himself tested. He saw the health advisor and as a result decided that there was no call for him to be tested.

I haven't told my mother and brothers. The three of them know that I'm gay – they've known since I was nineteen. That caused enough problems in itself. I went home this Easter, not really sure whether I was going to tell or not. I was only there for a week. And when it came to the Wednesday and I hadn't told them, I thought no – thinking about my mother particularly – to dump this on her now and just leave would be an awful thing to do.

It's a difficult thing. What I don't want to happen is that in three years time I become ill with something like pneumonia and end up in hospital. I don't want my mother to find out that way. That would be horrendous for her. But if I tell her now and then go on for the next ten years being healthy, will she spend those years in fear and trepidation?

In two or three years time, I'll be ready. I'll know when it's time for me to tell. I want to tell her. It will send her up the wall, it will be as if things are caving in on her. After that, there would be, I hope, a tremendous amount of support.

There was a situation about three years ago where my brother wouldn't let me see his kids. That tore me apart. I'd arranged to meet him at his home, to be there for the evening. I met him in the middle of the road and he said his wife didn't want me near the kids, she's afraid of AIDS. He said, 'You're a queer, queers get AIDS, don't they.' I left him, went into town and just got totally wrecked. I was in tears.

One effect of telling people is that relationships change:

Some of my close friends suddenly wanted to wrap me up in cotton wool. It was as if I became some china doll that had to be treated gently.

I was known at college as being one of the more controversial figures. I revelled in that. I'd be forever challenging people about issues to do with unemployment or race or sexuality. I loved getting into heated arguments at times. Two people in particular, I noticed that their whole tone towards me changed, they wanted to 'care for' me. I didn't need to be cared for in that way. I said, 'Listen, I'm still Danny, I'm not "Danny-HIV-positive", I'm Danny.'

On one level, it was good to know their desire to shield me from other people's ignorance and fear. On another level, I'm a fighter, born into the civil rights movement in Ireland and brought up with protest almost running in my veins. It was the possibility that that part of me could have been lost. They became like the parent and I became the child. But I was able to say, 'Hang on a minute, I'm still me.' I still enjoy stirring things, I've spent my life breaking out of closets and I'm not about to be shut into another closet called HIV.

I'm now involved in a number of training groups. And I'll say 'Listen, if I as a person with HIV get up your nose, then bloody well tell me.' If you begin treating someone as if they're breakable, then you're in danger of robbing them of some of their humanity.

There is always a fear of prejudice:

I get paranoid on occasion, I think I overhear or see the odd kind of look, as if people are talking about me, people who I'm not close to particularly. I refuse to keep my HIV status under lock and key. I'm not broadcasting it from the rooftop, but one of the things about HIV and AIDS is the stigma and the loneliness and isolation.

I used to run a playschool. I really love kids. Often, the mums would be a bit harassed and they'd say, 'Here Danny, take this little so-and-so off me hands.' And I'd take the child and look after them, while mum went for a walk. Which I loved. Sometimes, when the kids were coming through, before they'd get from A to B they would have to crawl all over Uncle Danny. You'd see me crawling under the tables chasing the kids.

One day, just after my diagnosis, I was doing that with one little kid and the thought hit me ­­– how would his parents react if they knew I was HIV-positive? And I froze, it was a horrendous thought. Then I thought, no, I'm not going to let this child suffer. He's used to me chasing him around, he looks forward to it and I enjoy it as well. As for the parents, I don't know how they'd have reacted, because they didn't know.

Awhile later, I had an incident with a married couple who I'm very close to. I told the husband I'd been diagnosed HIV-positive. The next day, his wife came with her child around the corner and she said 'Look who's here, Jim' as she did every morning. And Jim came tearing round, 'Danny, Danny, hug', arms in the air. There was nothing out of the ordinary. Just this woman being the same with me as she'd always been. I walked away feeling twelve foot tall.

It is most helpful to meet others in the same situation:

I can come across as being very outgoing, easy, laid back. And I am, partly. But there have been times when it's almost as if the whole surroundings just freeze. And I'm just left there, feeling like I'm suspended on the end of some rope somewhere.

Within the week of being diagnosed, I went into the AIDS centre in my area and saw one of the workers. I told her and she didn't say a word, she got up and came over and held me. That was exactly what I needed. Then I found I was going in there almost every day of the week, just to sit down and have a coffee. And let people in the street walk past – they could be out there, I was in here and I was safe.

I asked if I could speak with someone else with HIV. The feeling of relief when I saw this person who had been living with it for at least five years and he was healthy! That was so good, to talk to him. We were in the same boat. He knew what it was like, he had experienced some of the same things and he was enjoying his life.

Just the other day, I was asked to speak to someone who had just been diagnosed. That gave me a great feeling of contributing, of helping somebody else, just like this person that I spoke to. Just being there.

Danny found he needed to come to terms with himself:

When I was first diagnosed, I felt very angry at myself, that I had been stupid enough to pick up HIV. I should have been practising safe sex for at least five years.

In one of my counselling sessions, the counsellor piled on top of one another five telephone books. She gave me a piece of wood and said, 'Anger doesn't have to be a negative thing, it can be healing, but only if you express it.' I started to hammer into the telephone books and it was frightening, the rage that was in me. It was directed against me.

My feeling about myself has changed. Overall, I like me. I am a wholer person today than I was this time last year. HIV brought out all kinds of issues – things that happened as a child – I've been able to look at them. I like being me. The God I believe in doesn't make mistakes.

The Jesus of the gospels and the Jesus of the Church so often seem two different people. Some parts of the Church even go as far as saying that AIDS is a plague sent by God. But those who think that haven't met my God. That's blasphemy, to say that God is a despot, playing germ warfare with sections of humanity, it's blasphemy.

I'm going to go ahead with the ordination. Very much so. I've been on the road to ordination for eight years and I'm not about to fold up.

Wise Before Their Time:

People with AIDS and HIV talk about their lives

By Ann Richardson

‘This collection of true stories is as powerful as any great classic of fiction’ Sir Ian McKellen.

They are young and they have a life-threatening disease…

The year is 1991. Diagnoses of HIV are rising and there is no cure in sight. Coming from all corners of the world, forty-one young men and women talk about living with HIV and AIDS.

They must cope with the enormous stigma, blame and guilt associated with the disease. And there are challenges in telling their parents and partners, trying to keep healthy and looking for work – all while facing an inevitably shortened future.

Yet they remain committed to celebrating the joys of life as much as they can. The book is testimony to the resilience of the human spirit.

Amazon UK • Amazon US

Ann Richardson

Ann Richardson spent her working years as a health researcher, undertaking work commissioned by governmental and other agencies to understand people’s experiences of - and views on - their health care. Now retired, she enjoys writing books using her research and writing skills. These books are on all on different subjects: people with HIV/AIDS; people working in end-of-life care and grandmothers, but use the same technique of direct quotation from interviews. A fourth book about the inner thoughts of older men and women is in planning. American by birth, she has lived in London for over fifty years.

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