Dancing in the face of death

These days, in Australia, it’s rare to go to the funeral of someone who has died of AIDS. It’s now almost two decades since combination therapy turned the epidemic around, and as effective treatments are rolled out across the world, the number of people dying of AIDS is declining even in poorer countries. 13 million of the 35 million people living with HIV are now on treatments and the death rate has dropped by 35% since 2005.

It’s possible the end of HIV and AIDS is now in sight, but 1.7 deaths and 2.1 million new infections in 2013 show that there’s still a way to travel on that road. For some communities, the grief and loss that I experienced in the early 1990s, when I was losing friends to AIDS, are raw and real and happening right now.

Yesterday people all over the world lit candles to remember loved ones who’ve died, and to raise awareness that HIV is still with us.

I don’t go to the Candlelight Memorial. There were multiple deaths in my family when I was a teenager, and I again had to deal with the deaths of many people I cared about when I started working in an HIV organisation in the 1990s. I’ve always felt that attending a public event dedicated to grief would open a floodgate of sorrow that I’d prefer to keep private. But it’s still a time when I think about those people.

It’s easy to dwell on the sadness and anger, but there are also, of course, many good memories. When I reflect on those years, what stands out the most is people’s passionate determination to win the fight against the virus.

This took many forms. Activism and advocacy for access to new treatments and to needle and syringe programs, campaigns against stigma and discrimination, people taking risks to ensure those they loved died well, and, underlying it all, a dark humour that helped us to face our fears. One of the things I remember the most is … laughter. We thumbed our noses and danced in the face of death.

I still work in the HIV sector and I’m still surrounded by amazing, passionate, determined people. The fight hasn’t ended and people are energised by the prospect of defeating HIV, just as in the early years we were energised by our stubborn resolve that we would not be defeated by it.

The history of HIV is a story of human resilience, and it always has been. Musicians were there from the beginning, of course, supporting and magnifying that resilience. I’ve shared some of their music on previous posts, and here are two more for the HIV collection. They’re both songs from the 1980s that I’m sure have helped many people dance in the face of death.

I wonder how many people owe their lives to the Mighty Sparrow’s exhortation that ‘tho it be soft [condom] must not fall off’?

This song is apparently the first ever written in response to HIV/AIDS.

And finally, the great Congolese guitarist Franco Luambo Makiadi whose Attention Na SIDA told people how they could protect themselves from HIV.



3 thoughts on “Dancing in the face of death

  1. Very heartening to hear more and more people being more vocal about the fight against AIDs around the world. It’s something that is real, something that is prevalent. However, growing up in Singapore and Malaysia for ten years a decade ago, I had no idea what AIDs or HIV was. Nothing about these two topics were taught in school and I certainly didn’t see any campaigns raising awareness for it on TV or in the papers. I don’t know why, but I’m certain these two Asian countries have a low AIDs/HIV rate. It wasn’t until I came back to Australia that I started gaining more awareness about it – and how it can actually be overcome.

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