30th World AIDS Day - a time for remembrance, resilience and reflection

Just occasionally, the UK public gets reminded that AIDS isn’t over and done with. Not at home, and certainly not round the rest of the world. 

Ash Kotak
1 December 2018
world aids day india.jpg

Image: Eve of World Aids Day 2018, Kolkata, India. Credit: Tumpa Mondal/Xinhua News Agency/PA Images. All rights reserved.

Just occasionally, the UK public gets reminded that AIDS isn’t over and done with. Yesterday’s brave announcement of his HIV status by Labour MP Lloyd Russell-Moyle was one such moment.

But generally, many people I speak to in the UK think it was a thing of the 1980s and 1990s. That it was about tombstones and doom-gloom deaths of young gay men, Africans, drug users and people living with Haemophilia (the UK Infected Blood Inquiry is currently in process but rarely hits the headlines). And that now it’s over.

But it’s not over in my memory – and it’s not over for many, both at home and round the world.

I remember my many friends who died, now over 20 years ago, prior to the life-saving medications of 1996. John, Nigel, Graeme, Philip, Riyaaz, Peter…

I think too of the HIV positive former Mumbai sex workers I filmed, kidnapped from their homes as girls and sold to madams in the numerous brothels as sexual indentured slaves. They bought tears to my eyes as they performed a group puppet show with song and such joy against so much sadness. I had the privilege of meeting them in 1995 the Elton John AIDS Foundation asked me to assess the projects they funded in Northern India.

What happened to Niru, Radhika, Sonali, Rani, Daksha?

And how about the truckers in Delhi, Paresh and Balraj, who climbed onto the top of the dusty but beautifully and lovingly decorated trucks proclaiming, almost boasting, “it is here, where we do the “reverse gear” (meaning anal sex). Were they all able to get HIV medications? Did they survive?

I still see faces - emotions - and remember conversations that created our memories together. You read names that may understandably mean little. What connects them all is the stigma and the prejudice they faced in separate nations on different continents.

On the 1st December 2018 it is the 30th World AIDS Day – and it’s a time for remembrance and reflection. The London based charity StopAIDS, along with other leading HIV organisations including #AIDSMemoryUK (the UK Campaign to establish a national tribute to people with HIV) are leading on the EndAIDS2030 Festival. Over 40 events will take place across the UK, highlighting how the goal of eradicating AIDS by 2030 will be sabotaged unless global political leaders commit to plugging a significant annual funding gap of US$4.9 billion.

Over thirty-five million people have died of AIDS worldwide, so far. Today there are 36.9 million people worldwide living with HIV. 42% still cannot access antiretroviral therapy (ART) globally. Deaths have fallen but are still around 940,000 per year, and new infections remain high at 5000 per day. More widespread testing and treatment could reduce this dramatically – but that requires money.

In late 2018, nobody needs to die of AIDS with condoms, PEP, PrEP and U=U (Undetectable = Untransmittable). The findings of the landmark Partner 2 Study, released this summer, confirmed the 2017 Partner 1 results: 800 gay couples (one HIV undetectable, the other negative) had sex more than 77,000 times without condoms and it was scientifically proven that it is not possible to pass on HIV if on working medications. We are at a turning point.

Why remember?

I was in my 20s when they got sick and fell. So many experiences were new then. We were fighting homophobia, racism, HIV stigma and moralizing. We were driven with mission: our lives, our bodies, our voices. It was funeral after funeral, march after after march, human rights abuse after abuse, campaign after campaign.

That was before 1996.

In those pre-med days AIDS meant an almost certain death and the journey between it from HIV was terrifying – though soon became almost normalized. I eventually stopped going to funerals. I felt too much yet felt too little too.

I feared my own death as I saw so many of my loved ones die in front of me. I try/tried to discard the feelings as well as the emotions just to cope, to forget, to survive day by day but, they changed form, remaining hidden and held within me just waiting, waiting, waiting.

And then in those days the world was so homophobic I learnt, like so many like me, to not show the emotions as my form of expression. Who wanted to see that when we were all trying to escape the hopelessness? HIV was a pariah, albeit a common one. So the gay world offered solace, a fantasy drink, drugs and fucking. No one knew when the line crossed from freedom to, to freedom from. Soon too the boundaries between escapism and addiction disappeared.

Today I am scared of forgetting yet fearful of remembering. But of course remembrances surface, time machine surprises taking me to another place completely - a summer opening of a new gay bar in Soho, London is Graeme, a rainy winter night’s film at Forum Des Image in Les Halles. Paris is Philip, a spring cocktail party in Chelsea NYC is Peter, a warm autumn stroll in Mumbai is Riyad.

The awakening of 1996 arrived not with a fanfare declaring the war was over, not with celebrations filling all streets and squares. There was just disbelief and exhaustion and in grief. Our solidarity despite our differences, our hopes of how we could continue to live together into an AIDS free future were abandoned.

We survived to suffer loneliness and PTSD. We ourselves couldn’t see the scars and few were looking. Life just went on and it was declared that it was now post-AIDS. And so never forget became don’t remember.

Yet I wondered about little Niru in Mumbai, a mother at 17. What became of her?

The ‘End of AIDS’ is yet to be celebrated in much of the world. Many of us survived by chance and good luck, and we must keep fighting on until we end AIDS globally by 2030. As gay men in the West in 2018 we now can celebrate a breakthrough in HIV and AIDS as if we had micro-managed the victory ourselves as brown people, women, the poor and the marginalised continue to die the same horrible deaths, 22 years after the ‘End of AIDS’

This year on the 30th World AIDS Day, 1st December 2018 4-5pm #AIDSMemoryUK, StopAIDS, Pride in London and the British Council are resurrecting the once yearly London AIDS vigil with the theme: Remembering Women Affected by HIV. Women make up 52% of all people living with HIV today worldwide and this is rarely spoken off. Also forgotten are the many women in the UK who stood up to care and protest with their friends infected by HIV in the early days of AIDS. It’s time to fight again for an AIDS free world.

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