Lest we forget: Communities make the difference

Another day of AIDS awareness and mourning is upon us. It’s the 32nd since the 1 December was designated World AIDS day in 1988. This year’s theme — both timeless and timely — is ‘Communities make the difference.’

Earlier this year I republished a letter to my late partner, Lawrence, who died of AIDS in 1995, which I’d written in 2017. When it was first published a few hundred people read it. This time, it caught alight somewhere in the ether and the number climbed to more than 6000.

It’s rewarding, of course, when people read your words. And that they speak to readers means more (to me at least) than any amount of praise for the writing itself. Though perhaps the two go hand in hand — tell a story well.

But I like to think the response is a symbol of a collective understanding of the tragedy which befell Lawrence and those like him. One which wasn’t always there at the time. And that’s an understatement.

In one of the many conversations I had after the republication, one friend said to me he didn’t think he and others had really grasped the scale of what we went through in the grip of the AIDS crisis in the 1980s.

He was right — it often felt pretty bloody lonely. It was a generous admission, no less so for being said now. I reflected later that he and I had first met at an event in 2016 to listen to Matthew Todd talk about his book, Straight Jacket.

Largely attended by gay and bisexual men, including many of my generation, the event left a mark on me that I can still feel three years later. There was a visceral sense of pain in the room — a spasm which became an outpouring. And threaded through it all was stigma.

For those of us who lived through the 1980s, that stigma was a game of double jeopardy. We were only just learning to love without shame. Then we found ourselves in the midst of judgment — the ‘gay plague.’
AIDS was known for a period in the early 1980s as GRID — Gay Related Immune Deficiency. The label’s significance clung on to us long after the acronym changed.

I have been thinking about those years a lot lately as I tackle them in my memoir. And to take myself deep into the world we inhabited back then, I read two novels this year — Tim Murphy’s Christodaora (for the second time) and, most recently, Rebecca Makkai’s The Great Believers.

Both books are epic and sweeping tales of loss and survival — Murphy’s set in New York and Makkai’s in Chicago and Paris. Each is remarkable in its candour. Neither is for the faint-hearted.

The scale — and pace — of loss among gay men in the US at that time remains almost unimaginable. For the most part, what happened here didn’t touch the sides and yet the core experience was the same.

Makkai’s book, in particular, captures the fear that took hold. The endless counting we did. Not just of those infected, ill and dead — and of funerals — but of the sexual encounters we’d had and whether they might have put us at risk.

It made me recall the debates around testing in the early days too. We know the value of testing now. But then it was different. Many didn’t want to know they might be positive when that meant almost certain death.

And yet, as we know now, some survived. They made the arbitrary cut in the mid-90s when retroviral drugs emerged. I know how cruel that was because it happened just a year after Lawrence died. Still in the throes of grief, the possibility he might have lived eluded me until years later.

Others among us dodged the bullets — more possible here than in the US because we heard the warning sirens of death across the ocean. We rubbered up or stopped fucking altogether. But we felt guilty about our survival too. Why us and not our lovers and friends?

And yet ask anyone who went through those years who is still around, and I’ll bet they will recount the same cautionary tale. AIDS has framed the way we love — and don’t — ever since. We may not have died, but we still dwell in the land of the virus.

Both books are also a potent reminder of this year’s theme — Communities make the difference. Of how those most affected, and our allies, built movements on the ground. Before the world wide web and long before social media, we made our placards and pamphlets at home with Gestetners, Letraset and anything else that came to hand.

Those movements, as much as any scientific advance, literally altered the course of the disease. Murphy’s book, like David France’s brilliant How to Survive a Plague, chronicles how such advances happened because of communities — and in spite of establishments, medical and political.

As the writer, Tucker Shaw, reminded us in his searing thread on Twitter last year, AIDS is said to have ‘galvanised the gay community, spurred change, paved the way to make things better — in the long run.’

Other communities were part of that endeavour too as both Murphy and Makkai recount. I write primarily with reference to the gay community because it is the one I know, not to deny the weight of suffering — or contribution — elsewhere.

And I do so because it was in our response to the tragedy that I came to understand that we were a community — one that could make a difference. I wish it had been otherwise.

The need for the fabric of civil society at home and around the world to be strengthened has never been more urgent and yet simultaneously undermined by ruling elites. And the story of the AIDS epidemic — and the pandemic which followed — is as instructive as any about why we ignore that threat at our peril.

Lest We Forget is customarily used in relation to the red poppy rather than the red ribbon, an earlier cause we commemorate just a few weeks before World AIDS Day. The words, from a Rudyard Kipling poem which predates the Great War, have come to capture the sacrifices of those who died in wars so that we could live.

Yet it applies just as much to Lawrence and his ilk. They lost their lives, often fighting tooth and nail so that we might have a chance not to suffer the same fate. They neither chose nor were sent, to war. But they found themselves fighting one.

And boy did they make a difference — lest we forget. Because people are still dying. And the long run, as Shaw’s thread concludes, wasn’t that long ago.

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    Chris is a writer, influencer, activist and leader. Find out more about him here. image of Chris Creegan
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