Photo: Youcef Hadjazi
I bet you feel exhausted, right?
2020, the year everything changed.
A deadly new virus, a new way of life, fear and anxiety the new norm.
But as a person who has lived with HIV for over seventeen years, let me tell you, the level of fatigue you’re feeling after ten months of this shit-show of a year pales into insignificance compared to what people like me feel each day.
Fear, shame, stigma, blame – people with HIV have been navigating these since the fateful day we were diagnosed.
We live with the only disease that people (even Doctors) still think they have a right to ask: ‘but how did you get it?’ and let’s face it, they only ask so they can decide if we are deserving of their sympathy or their judgment.
When prominent Government officials declared Covid-19 was the first major global pandemic our generation had faced, well, forgive me when I say I choked on my freshly baked lockdown banana bread.
Globally, around 38 million people live with HIV, and it is estimated that 37 million people have died, many hundreds of thousands of them this year – whilst here in the U.K. people like us can access life-saving medication for free on the NHS, access to life this medication and to HIV education varies wildly across the world.
Thankfully, the fatigue I am feeling now isn’t due to the virus, I’m privileged enough to be kept healthy by medication... in fact, my exhaustion isn’t biological at all.
I’m exhausted because of the emotional labour I have to place into educating others in understanding their role in ending HIV and HIV stigma.
I’m so exhausted in fact that when the North West Tonight News programme broadcast an article about commemorating those lost to coronavirus by tying red ribbons to a tree on 1 December 2020 that I didn’t even have the energy to respond.
I’m exhausted because I now know I will need to explain why that was deeply disrespectful and downright offensive.
1 December is World AIDS Day.
The red ribbon has been a symbol of the fight against HIV/AIDS for thirty years.
To knowingly appropriate the red ribbon (they admitted they considered the colour and it’s implications but decided to proceed anyway) on a day set aside to memorialise millions who have died and to stand in solidarity with the millions who live with HIV smacked of erasure.
Erasure of LGBTQ+ lives (in the U.K. around 50% of people living with HIV are LGBTQ).
Erasure of Black, Brown and Asian lives (HIV disproportionately affects people of these ethnicities).
Erasure of women (women with HIV are often underrepresented and overlooked because, well, misogyny).
Erasure of sex workers (who have very little rights and respect as it is).
Erasure of anyone who doesn’t fit into their cisgendered heteronormative worldview.
Perhaps if North West Tonight had responded to my PR Consultant’s emails and phone calls requesting they run a story that celebrated the amazing people with HIV working tirelessly to end all new cases by 2030 then they wouldn’t have casually erased around 37 million lives lost to HIV and casually dismissed the 38 million people living with the virus.
But here’s the rub.
The fight for justice and equality is so often left to the marginalised communities disproportionally affected.
The history of the fight for better HIV/AIDS healthcare and against HIV stigma has been led by fierce LGBTQ+ people, Black folk, people in poverty, sex workers - people on the outside looking in.
And you know what?
The emotional labour we invest in educating YOU takes its toll.
Very often this labour is given free of charge.
Sharing from personal experience is a powerful tool for changing hearts and minds.
But too often marginalised people are asked to relive their trauma for free in order to educate.
And then I hear the dissenting voices resonate from the depths of my Twitter feed:
But it’s just a ribbon! People we’ve lost of Coronavirus should be remembered too!
Of course people we’ve lost this year should be remembered.
And of course the Herculean efforts of the healthcare professionals who have saved many lives from coronavirus, and ensured many deaths were as pain free and dignified as possible, all whilst putting themselves at risk should be commemorated.
But imagine if the red poppy had been used on 11 November.
Imagine if the pink ribbon had been used during Breast Cancer Awareness Week.
Imagine the outcry...
And although HIV doesn’t only affect men who have sex with men, I’m reminded once again of the words of fictional character Prior Walter in Tony Kushner’s seminal play about the HIV/AIDS epidemic, Angels in America:
‘F**gots?!’ he declares, ‘We’re just a bad dream the rest of the world is having!’
(Of course you can replace the first word with your marginalised human being of choice).
So what’s to be done about it?
Well you’ve got this far and you’ve read what I’ve had to say (a little more angsty than my usual posts, but hey).
Now is the time to commit to some affirmative action in the fight against HIV and HIV stigma.
Below is a list of things you can do that will make a difference - commit to one action, that’s it, just one.
Being an ally is about sharing knowledge and showing your support to those who need it - but don’t be performative about it, sharing online is great, but if it’s purely to make you feel better about yourself, think twice.
OK, here’s a list of things you can do:
Share this blog - add your thoughts, comments, questions, hopes, fears, provocations to it as well!
Get tested for HIV (if you have multiple partners, test every 3-6 months) - knowing your status is the best way to protect yourself and others from HIV. Find your nearest testing centre using the NHS.uk website. Many areas now have postal testing services, in Manchester head to sortHIV.org.uk.
Learn about Undetectable=Untransmittable (U=U) and commit to telling one other person about it.
Find out what PrEP is and if you’re sexually active and not using condoms, get yourself signed up for it (it’s free on the NHS).
When challenging prejudice, do the leg-work yourself, don’t just signpost to someone with HIV to put the emotional labour in for you (but equally, do ask for advice if you’re really stuck).
Buy my book First Time - on the surface it may look like a published playwright is raking it in... let me tell you, even if I sold 20,000 copies, I wouldn’t be.
Share ACTUP+Live (our free online creative educational resource) with teachers and community group leaders to use with their young people - it will help eradicate HIV stigma and shame in the next generation.
Donate to a HIV or sexual health charity, if you can’t afford to donate, follow them on social media, engage in dialogue with them, share their amazing work.
Follow Dibby Theatre on social media - keep up to date with our outreach project ‘In Equal Parts’ which is all about encouraging allies to step up and do the work.
Write to North West Tonight on my behalf (feel free to drop the link of this blog into your email too) ;)
Image: Youcef Hadjazi