AIDS Then and Now: Bereavement, Hope, Support, Love and Societal Change
1981 was the year that gave us Kim Wilde, Donkey Kong, the wedding of Prince Charles and Lady Diana, and the birth of MTV.
It was a golden age of popular culture – dance floors were full and hairspray was on the top of the shopping list.
But a dark cloud was looming.
In June 1981, the Centers for Disease Control (CDC) published the first official document on the disease that later became known as AIDS. The report had just made a connection, for the first time, between a ‘serious disorder of the immune system’ and homosexuals. The study was with five ‘previously healthy’ gay men, two of whom had died.
It is at that moment a dangerous perception formed of it being a ‘gay disease’ and is still a discrimination that is being fought against today.
Since the airing of the popular TV drama It’s A Sin, more people have been talking about what we can only imagine was a horrific time to be living as a gay man.
Here Tony shares his experiences:
It’s 1982. I’ve just got out of the shower. While I was there I checked under the soles of my feet, my armpits, and my groin for any purple bruises. There’s this new disease affecting young gay men. I’m a young gay man!
The purple bruises are lesions called Kaposi’s Sarcoma, which normally only affect very old people. I’ve read about it in The Pink Paper, but there’s no clear information. Nobody knows why or how, so you don’t know what being careful is about.
They were calling it “H” as it appeared to affect heroin users, homosexuals and (strangely) people from Haiti. Then it became known as “GRIDS” (Gay Related Immuno-Deficiency Syndrome).
In the mid-80s one of my close friends died. He was in his early 20s. I didn’t know he was ill. He was ashamed and didn’t tell anyone he had AIDS. I only found out when it was too late. I heard about more people who became ill, more people who died.
I joined ACT-UP (AIDS Coalition to Unleash Power) – the organisation that originated in the United States. We were a non-violent direct action group: we dropped 40-foot banners from the Town Hall (Action = Life, Silence = Death); threw condoms over the walls at Strangeways Prison; and campaigned against the inaction of the government.
In the 90s I worked at George House Trust (HIV organisation for the northwest) for three years. During that time I knew about 75 people who died.
After that, I worked with asylum seekers. I visited people on the HIV wards in North Manchester General Hospital to assess their immigration status and refer them to solicitors where appropriate. On one occasion I wasn’t allowed in unless I wore full protective clothing. I argued it wasn’t necessary, but I had to comply. On another occasion, I visited a woman. She died 20 minutes after I had left. Her 8-year-old son was taken into the care of Social Services.
I have many memories of bereavement, hope, support, and love.
I wrote this poem at a HIV writing workshop:
My darling, I love you with my heart,
My mind, my body, my soul.
Our bodies touching
Our legs entangling
Our lips pressing
Our tongues darting
Our arms caressing
Our hands holding
Our fingers entwining
But now I am HIV positive
Will I ever find those loving feelings again?
My legs tiring
My body sweating
My head aching
My heart hurting
My eyes crying
My mind slowing
My memories fading
Will my sweet feelings
Keep me going?
I will always love you,
My dearest darling.
Much has changed over the last 40 years. Effective HIV medication means that a person can reach a point where the amount of the virus in their blood is so low as to be undetectable, after which they are not infectious and cannot pass it on. In the UK in 2019, the virus was undetectable in the blood of 89% of all those living with HIV, and they could not pass it on.
There are parallels between HIV and Covid-19: the government was slow to respond; there was a marked impact on minority communities, and victims are blamed by the government. I live in hope that the government will learn from the mistakes of the past – but I won’t hold my breath.
Meet the fearless lesbian couple
Phyllis Papps and Francesca Curtis came out live on national TV 50 years ago, and their actions changed Australia forever.
The couple, who are still together, appeared together on ABC current affairs programme This Day Tonight in October 1970, becoming the first lesbian couple to come out on Australia TV.
The fearless women are now “coming out for the last time” in a new documentary titled Why Did She Have To Tell The World?
The documentary, screened on ABC’s Compass programme, details Curtis and Papps’ 50-year relationship and the wave of political change that came after the couple appeared on TV.
Papps said in the documentary that Australia in the 1970s was “very, very conservative” and that “gay women were invisible” because “people didn’t think lesbians existed”.
The pair struggled with their sexuality in this climate, and Curtis admitted in the documentary that she didn’t know “anything about homosexuality or lesbianism”.
She said: “Nobody talked about it in those days.”
Papps shared how she came from a traditional Greek family and was even briefly engaged to a man. She said that she opened up to a colleague about her sexuality, and the individual “gave me the names of three psychiatrists”.
Papps said she visited one of the psychiatrists and was given the drug “sodium pentothal, injected with it and then had to talk”.
The couple met through activist circles and became prominent members of the Daughters of Bilitis, Australia’s first homosexual political rights group. The organisation was later renamed the Australasian Lesbian Movement.
In July 1970, Papps and Curtis exchanged wedding rings, even though Australia did not legally recognise same-sex marriage until December 2017.
Just a few months later they appeared on ABC’s This Day Tonight to take part in a segment about lesbianism and to push for wider acceptance of the LGBT+ community in Australia.
“No one wanted to go on [the show], they were all in the closet, so Phyllis and I volunteered,” Curtis shared.
While on the show, she told the host that she “had three months approximately of guilt” about her sexuality, but then she got to a stage where she wanted to “tell the world” and “wanted the world to accept it”.
In the aftermath, Papps said her mother “took legal action” to prevent them “from making a claim on her inheritance”.
Beyond their personal lives, the interview signalled the beginning of Australia working towards LGBT+ equality. Papps said she believed the interview was “major in creating a force” towards LGBT+ progress.
“It has been a life of struggle … Not because we couldn’t cope with being ourselves [but because] we couldn’t get people to accept us,” she said.
Throughout the ups and downs, Papps and Curtis have always had each other, and now they live on Phillip Island in Victoria.
Papps visited her mother in her nursing home while same-sex marriage was still being debated in Australia. She said her mother had “voted yes” on the marriage equality postal survey in 2017.
LGBT Mayoral Hustings
The LGBT Mayoral Hustings are coming up in mid-April, and ahead of this the LGBT Foundation is asking you to submit your questions to the mayoral candidates.
You can share your question directly via this google form:
Please see the form for tips on asking your question.
It would be fantastic to have the voices of over 50s represented as part of this event.
Podcasts – “Call Me Mother” & “Meet David Sedaris”
Trust me – these podcasts are amazing. Please do listen if you get the chance.
Call Me Mother is a podcast about older LGBT people. Shon Faye’s new podcast rails against the patronising image that reaching your 60s and 70s involves sitting under a blanket and knitting, by talking to older LGBT trailblazers.
First up is 73 year old Kate Bornstein, who talks about growing up wanting to be a girl, her relationship with Scientology, and finding her identity after she transitioned.
In the second edition Faye speaks with Brad Becker, a 60 year-old gay man whose life’s work has mirrored the tumultuous highs and lows that have rocked the LGBT community over the years.
There are further episodes with Marc Thompson and Caroline Paige.
Faye encourages her listeners to soak up all there is to be learned from the people who grew up in a pre-Stonewall era, as they share their warmth and wisdom.
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What with the whole world grinding to a viral halt and everything, this special series of essays and diary entries is recorded at the Sussex home of the world-renowned storyteller.
In this series of Meet David Sedaris, he continues to entertain with sardonic wit and incisive social critiques. David Sedaris has become one of America’s pre-eminent humour writers and, in 2019, was elected to the American Academy of Arts and Letters. The great skill with which he slices through cultural euphemisms and political correctness proves that he’s a master of satire and one of the most observant writers addressing the human condition today.
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