We’ve beaten the virus — it’s time to kill the stigma
Disclosures, published by Stewed Rhubarb Press, is a book of sometimes harsh contrasts. Of visibility and invisibility, silence and noise, innocence and experience, openness and closedness — despair and hope.
And the contrast at its core is about shame. It is, unashamedly, a book about living with HIV in Scotland today. And yet, without the shame that has stubbornly clung to the virus, it would scarcely be necessary for its stories to be told.
As our Makar, Jackie Kay, writes in her foreword to the book, ‘old fears and superstitions and neo-biblical warnings have been woven into the fabric of lies about HIV.’ Here, she says, is a collection of accounts which seeks to ‘stitch new squares in the tapestry of stories.’
That such a collection should matter at all, hurts. It feels like the ultimate slur on the lives of people we loved and lost. Those, like my late partner, Lawrence, for whom advances in science came too late. And my friend Tim who went to his bed one night and died of stigma — undiagnosed, undisclosed — alone.
Yet 36 years after Terence Higgins became the first person to die of AIDS in the UK and 22 years after the arrival of retroviral drugs changed the disease’s narrative, still, the stigma persists.
Recent research revealed that two-thirds of people in Scotland would not feel comfortable dating someone with HIV. It’s scant comfort that bald statistic makes us no better or worse than most of the rest of Europe. And it should be a call to arms.
We have tamed the plague — first by finding a way to stop it in its tracks and then — with the arrival of PrEP — by creating a means to prevent it from taking hold at all. But the shame — that’s another story.
‘We can now live without being judged’ says one of the book’s contributors, speaking of attitudes to sexuality. He’s right — and what a remarkable story that is — more than two-thirds of us now think that same-sex relations are not wrong at all.
That’s up from less than a fifth in 1983, the year after Terence Higgins died. Shockingly that figure shrank to barely more than a tenth in the early years AIDS — in no small part because of the moral panic it sparked.
So now we are far more likely to judge someone for having HIV than we are for being gay. The figures are almost in reverse — despite the fact that we have stemmed the tide of the disease. That HIV doesn’t only affect gay and bisexual men makes that fact more offensive, not less.
Disclosures, and the stories within it, is — as its subtitle declares — about rewriting the narrative. It challenges us to confront attitudes, still prevalent, we should have long since banished.
And we know that it is by telling stories that we can beat this thing. We know from the reversal of fortune in our attitudes to the very same-sex relations we feared were responsible for spreading the disease a generation ago.
Campaigns — hard fought — played a noble role. But, ultimately, it is the stories we tell each other — in relationships and families and communities — which are normalising same-sex relationships. We’re not there yet but we’ve adjusted the sails and we have a fair wind behind us.
We can — and must — do the same with attitudes to HIV. As another contributor recounts, it’s not HIV that kills, it’s fear and stigma. Scotland’s Minister for Public Health tweeted this week:
‘Brilliant news that Scotland has hit the UNAIDS targets for HIV. 91% of people living with HIV in Scotland have been diagnosed, 98% of those are on treatment, and 97% are virally suppressed. More work to do, but a significant milestone.’
He’s right — brilliant news indeed. Great too that the city of Glasgow has committed, boldly, to eradicating HIV transmission by 2030. But this will only happen — in Glasgow, in Scotland and beyond — if we pledge, fearlessly, to eradicate shame too.
Thirty-three years ago, Lawrence and I sat on a bench in the fading light of an October evening just a few weeks after we’d met. As we looked out at the River Thames in front of us and the busy world bustled by, he told me — ‘I’m positive.’ For a moment, those words silenced everything around us.
Heart in mouth, I paused. The plague was up close and personal. ‘It’s okay’ I said. In so many ways it wasn’t of course. And he, unlike me, did not live to tell the tale. But what was okay — was that he had HIV. The next ten years was a roller coaster — but to have lived without them? That’s unthinkable.
And our mission now must be to make HIV okay — it’s that simple. We’ve all but beaten the virus. It’s time to kill the stigma.