Remembering the AIDS Epidemic and the Lessons We Learned

Do you remember the terrible AIDS epidemic in the 1980s and 1990s? Were you directly affected by it? We are all old enough to remember. But for some, it may have passed by as an awful situation that happened to other people, with little impact on their family or friends.

And for others – more than is often recognised – it had a dreadful import. Many were reluctant to talk about it to anyone. It was a time of great stigma and shame.

AIDS and Women

Because HIV was most rife in the gay community, it was often thought that it did not have a big impact on women. Yet, there were some women who acquired HIV through other routes, such as needle-sharing or partners who brought it home to them.

But to limit discussion to these women is to misunderstand the nature of human relationships. Whether or not we had HIV ourselves, we were also mothers, sisters and friends. Some of us worked in professions, such as dance or theatre that were heavily implicated. Many of us were deeply affected.

Wise Before Their Time

In the late 1980s, I met – and became close friends with – a young man who had been living with AIDS for a long time and was very active in the HIV/AIDS community.

In 1991, he was organising an international conference in London of people with HIV and AIDS, and we decided to write a book based on interviews with some of the participants. In all, we interviewed over 20 people from 15 different countries about their lives.

These mostly young men and women described their efforts to cope with the stigma, blame and guilt associated with the disease. They talked about their difficulties in telling their parents, partners and friends. Not to mention coming to terms with a very early death.

The book, Wise Before Their Time, was published in 1992 and republished in paperback and as ebook in 2017. Sir Ian McKellen wrote a Foreword in which he said, “this collection of true stories is as powerful as any great classic of fiction.” My friend did not live to see its publication.

Bringing the Significance Home

I always saw a major audience for this book to be the ‘hidden’ mothers all over the world. Some might be too ashamed to tell their friends or neighbours about their son with HIV, while others might be grieving for a son who died too early.

The significance of HIV for all sorts of women was brought home to me on one very memorable occasion.

My parents were living in a retirement community, which sometimes invited residents’ children to give public talks, based on their expertise. My father was keen for me to give a talk based on this book.

Since AIDS was not a disease discussed much by ‘respectable’ people, I suspected this was not likely to be a very popular event! But my father was very well liked, and he told everyone that they had to come. The hall was therefore packed.

Silence

I did readings from the book for half an hour or so. At the end, there was a short silence before any applause. One friend of my parents told me afterwards, “We were all stunned.” But there was enormous response, with active questions and discussion.

Afterwards, I was swamped with women wanting to talk to me about their own situation. They wanted to talk about their sons, their brothers, their friends.

One woman asked me to come to visit her, because her son had died of AIDS, and she had never told anyone at all. Another left some cash in my parents’ mailbox with a request that it be given to an AIDS charity.

It showed how many women were affected by the disease, yet were suffering in silence, perhaps not realising how many other people were in the same situation.

AIDS is no longer a fatal disease, and people diagnosed with HIV can expect to live a normal life span. But I recently decided that Wise Before Their Time would have historical interest and I have now reissued it.

If you were affected by AIDS – or even if you weren’t – I hope you will find it very powerful indeed.

Let’s Have a Conversation:

Were you affected by the AIDS epidemic years ago? If so, were you able to talk about it with friends or others? Please share your experience below.