Posted in: #fediblog, #music

During the darkest days of the AIDS epidemic—when testing positive was widely treated as a death sentence—pop icons like Madonna, Elton John, the Pet Shop Boys, Cyndi Lauper, and George Michael channeled grief, fear, and resilience into their music.

However, songs addressing HIV, AIDS, and serophobia aren't just artifacts of the 1980s and 90s. Artists continue to write about these themes today, keeping the conversation alive and confronting ongoing stigma.

Coolio – “Too Hot”

Coolio laid it down in his signature 1995 track “Too Hot,” a loose reinterpretation of Kool & The Gang's classic of the same name.

The track directly tackles the risks of unprotected sex during an era when effective treatments were non-existent, and a condom combined with regular testing were the only real shields available. The lyrics follow a long chain of sexual partners to illustrate how quickly a virus can spread unnoticed through a community until it hits someone living with HIV. Coolio calls out the absurdity of abstinence-only preaching from elders, urging people to be realistic, wrap it up, and take responsibility before a good time turns into a tragedy.

Down Low – “HIV”

German hip-hop group Down Low took a strikingly unique angle in their track “HIV.” The song is written from the first-person perspective of the virus itself.

It reads almost like a villain giving a warning speech: the virus describes its arrival in the 20th century, mocks human attempts to eradicate it with early drug trials, and warns listener after listener about the devastating impact it can bring to families and lives. Yet beneath the menace, there's a surreal, desperate tone where the entity demands attention from the public. It serves as a stark reminder of the fear and psychological shadow the virus cast over society in the late 90s.

Elton John – The Last Song (1992)

The story of a young man dying of AIDS who reconciles with his father at the end of his life. Elton John donated the proceeds to AIDS charities.

Elton John – “Ballad of the Boy in the Red Shoes”

Elton John has been on the front lines of AIDS activism for decades. Beyond “The Last Song”—which tells the heartbreaking story of a father coming to terms with his dying son—he also released “Ballad of the Boy in the Red Shoes.”

The song tells the story of a gifted dancer named Sigmund who is forced to step away from the stage as AIDS takes its toll on his body. While the character is fictionalized, the track strongly echoes the real-life tragedy of legendary dancers like Rudolf Nureyev who lost their lives to the disease.

Queen + Paul Rodgers – “Say It’s Not True”

Written by Roger Taylor and performed alongside Brian May and Paul Rodgers, “Say It’s Not True” was originally composed for Nelson Mandela's 46664 HIV and AIDS awareness campaign concert in 2003.

Later released as a global single for World AIDS Day in 2007, the song captures the overwhelming emotional shock, denial, and grief a person experiences the moment they receive a positive HIV diagnosis.

George Michael: Jesus to a child

Dedicated to his former partner who died of AIDS in early 90s, Anselmo Feleppa.

Anselmo was very sick when George performed his version of Queen's “Somebody to love” during the Freddie Mercury Tribute Concert, in April 1992, an event whose funds were desined to HIV and AIDS related research.

Bruce Springsteen – “Streets of Philadelphia” (1993)

Written for the movie Philadelphia (one of the first mainstream Hollywood films to address HIV and AIDS directly), this haunting track explores the physical deterioration, isolation, and social alienation felt by a man dying of AIDS. Springsteen’s understated vocals capture the quiet dignity and devastating loneliness of living with the virus during early 90s.

Lou Reed & John Cale – “Hello It's Me” (1990)

From their tribute album Songs for Drella (dedicated to Andy Warhol), this song also serves as a poignant farewell to friends lost during the early years of the epidemic in New York's art scene. It reflects on sudden loss, unsaid words, and the grief sweeping through creative communities.

Salt-N-Pepa – “Let's Talk About Sex” / “Let's Talk About AIDS” (1991)

At a time when public health education was stalled by taboo, hip-hop pioneers Salt-N-Pepa revamped their hit single into an explicit educational campaign track. They urged young people to break the silence surrounding safer sex, condoms, and HIV testing, playing a massive role in destigmatizing the conversation on mainstream radio.

TLC – “Waterfalls” (1994)

One of the biggest R&B hits of the 1990s, “Waterfalls” tackles two major societal issues of the era: street violence and the AIDS crisis. One of the verses explicitly tells the story of a young man who engages in unprotected sex, contracts HIV, and ultimately succumbs to the illness, serving as a powerful warning about health and lifestyle choices.

Jimmy Somerville / Bronski Beat – “Read My Lips (Enough Is Enough)” (1989)

Jimmy Somerville was one of the most vocal openly gay artists protesting government inaction during the peak of the crisis. “Read My Lips” was an angry, upbeat synth-pop anthem demanding funding, medical research, and an end to homophobic policy decisions that exacerbated the epidemic.

Safe Livin' in Dangerous Times – Automatic Pilot (1984)

One of the very first songs about AIDS. It was written for “The AIDS Show”, staged by Theatre Rhinoceros in San Francisco in 1984, probably the first musical on the subject. A practical, community-made song about staying safe when nobody else was giving information.

Living with AIDS – Romanovsky & Phillips

The gay folk duo Ron Romanovsky and Paul Phillips wrote several songs on the epidemic. This one, together with “No False Hope”, is among the ones they were proudest of: direct, honest and without euphemisms.

That's What Friends Are For – Dionne Warwick & Friends (1985)

Dionne Warwick, Elton John, Gladys Knight and Stevie Wonder recorded this charity single to raise money for AIDS research. The lyrics never mention the disease, but the song became a symbol of solidarity at a time when many people turned away.

Boy Blue – Cyndi Lauper (1986)

Written for one of Cyndi Lauper's best friends, who died of AIDS. The proceeds of the single went to AIDS research and patient care in New York.

It Couldn't Happen Here – Pet Shop Boys (1987)

One of the earliest songs on the subject by a major pop act. It comes from a conversation between Neil Tennant and his friend Chris Dowell about the false belief that AIDS would never reach Britain. Dowell died in 1989.

Domino Dancing – Pet Shop Boys (1988)

On the surface, a story of jealousy and a love triangle, with a Latin sound and a famously homoerotic video. Some critics read it as an implicit AIDS song, with the image of dominoes falling one after the other. The band never presented it as an AIDS song, so it is an interpretation rather than an official meaning.

Jimmy – Boogie Down Productions (1988)

KRS-One's classic hip hop track about using condoms. Often cited as one of the best safer-sex songs in rap history.

Halloween Parade – Lou Reed (1989)

Lou Reed walks through New York's Greenwich Village Halloween parade and notices who is no longer there. A quiet, devastating list of absent friends.

Being Boring – Pet Shop Boys (1990)

An elegy for Neil Tennant's best friend Chris Dowell. It looks back at youth and parties, and at the people who are “missing” by the 1990s. Many gay listeners recognised it at once as a song about AIDS.

I've Got You Under My Skin – Neneh Cherry (1990)

A Cole Porter standard turned into a dark warning about HIV. Recorded for “Red Hot + Blue”, a benefit album where artists reinterpreted Cole Porter songs to fight AIDS.

One – U2 (1991)

The song itself is open to many readings: the band's own crisis, German reunification, broken relationships. But the single was released as an AIDS benefit, with the band's royalties going to AIDS research, and its cover is a photograph of buffalo falling off a cliff by David Wojnarowicz, a gay artist and activist who died of AIDS in 1992. Through the single and its videos, the song became tied to the epidemic.

Dreaming of the Queen – Pet Shop Boys (1993)

Neil Tennant described it as an anxiety dream about the disease: a surreal meeting with the Queen and Princess Diana, where love seems to have run out.

Jonathan Wesley Oliver Jr. – Lee Lessack (1995)

A song about the AIDS Memorial Quilt, the giant patchwork made of panels sewn in memory of people who died of AIDS. Considered one of the most moving songs on the Quilt.

Goddam HIV – Mary Gauthier (1997)

Folk singer Mary Gauthier speaks in the voice of a man dying of AIDS. Raw and angry.

Together Again – Janet Jackson (1997)

An upbeat dance song written for friends lost to AIDS. Instead of mourning, it imagines meeting them again. It became a number one hit.

B.O.B. – Outkast (2000)

Not a song about AIDS, but among its list of unanswered questions it asks for a cure for AIDS. A sign of how HIV had become part of the collective worries at the turn of the millennium.

Want to listen to more?

• Queer Music Heritage – Songs About AIDS, a radio special by JD Doyle with hours of songs, many from the gay community.
• Soundtrack to a Pandemic, by the Thackray Museum of Medicine, with Spotify playlists.

Looking Back and Moving Forward

The medical landscape today looks vastly different from the 1980s and 90s. With effective Antiretroviral Therapy (ART), people living with HIV can achieve an undetectable viral load, meaning the virus cannot be transmitted (“U=U”: Undetectable = Untransmittable). Furthermore, Pre-Exposure Prophylaxis (PrEP) offers reliable prevention for those who are HIV-negative.

Despite these breakthroughs, stigma (serophobia) remains a major barrier. Access to treatment and prevention still varies wildly across the globe due to cost and systemic inequalities. The songs written during the height of the crisis remain vital reminders of how far we’ve come—and how important it is to keep fighting for global access to care.

Posted in: #fediblog, #introduction, #personal

Real names or nicknames?

We met online and neither of us guessed a friendship could develop, given how much we fought from March to June 2019; in fact, truth be told, knowing each other better we found out that we had been chatting back in 2003 without ever sharing information about each other’s lives. We were just “Talksina” and “AlexPianoPlay” who argued fiercely on computer-related topics exchanging swear words but accurately avoiding any discussion or attack on private matters. Two moving little windows anonymously talking to each other about nothing, for months.

During early 2000s there was little awareness about digital bullying, so experiencing Internet as a gay man and a woman with disability forced us to build a huge shield of distrust around ourselves; we argued but sought each other out in chat rooms every night, even though we knew how the discussion would end.

Looking back we assume that even though unaware of each other we had instinctively understood that we were experiencing the same virtual humiliation from strangers and that arguing about technologies was like a punching bag in which to vent.

“Coming out” about the past was not easy after years of friendship born with our real names and under very different circumstances since 2003, but it ended with, “See what life is like? It was easier for you to tell me about your HIV than to let me know that you were AlexPianoPlay the Windows fanatic who talked about free software like it was cancer”. Final laughter and inevitable flashbacks of the swear words behind which, perhaps, an unconscious mutual esteem was hiding even then.

Introducing ourselves with our names?

In 2019 when we decided to run the blog together, we agreed that “Elena and Alessandro” were too “normal” to make it a stage name: what appeal would the name “Farrokh Bulsara” have? Much better Freddie Mercury!

Before choosing current nicknames we tried shortening our real names in “Eli” and “Alex”, considering the idea of hiding our real genders.

Who is the man, who is the woman? “Eli” can shorten Elena, Eleonora, Elisa, Eliana, but also male names Elijah and Elias. On the other hand, Alex can stand both for Alexander and Alexandra.

Although they were neutral, “Eli and Alex” sounded too trivial so we changed our mind again: who cares if we’re identified by gender, whenever someone judges us as a couple we’ll behave accordingly.

From stupidity to irony

In the midst of the discussion about nicknames to use for ourselves, we also tried, “let’s call each other by sign!” And we burst out laughing, “you’re a girl, and calling you TAURUS feels like taking the piss.” “You have HIV, and calling you CANCER is inappropriate.”

Misunderstanding: “sign” means “HIV status” instead. Positive and negative? No, it does too much stigma and it’s the worst result. Plus and minus looked like considering ourselves as machines. Electron and proton! That’s it! And we used them for a while but something still didn’t sound all right.

Elettrona

We studied a way to create a feminine version of “Electron” name but nothing fit good: “lion” is “lioness”, “electron” is “electroness” it was really bad. Italian sounded awful, English even worse.

Best choice ended up as “Elettrona” as it turns out to be a hybrid between the word “electron” and her real first name “Elena”.

Gifter

The nickname in question comes from a mainly gay subculture mentioned during late 1990s and early 2000s, caused by anti-AIDS campaigns based on fear rather than awareness: the anxiety of testing, stigma, homophobia and in some cases loneliness, prompted some people to believe themselves more sexually free by making dangerous choices: “if society thinks we are destined for AIDS, we decide on our own how, where, when, who.”

So a chaser -bug chaser- would be someone living without HIV, but wanting to get it through condomless sex.

Gifter or “gift giver” is the one who lives with HIV and passes it on to chaser. Valentino Talluto and other people arrested for deliberate HIV transmission would not be included in this definition though, as people were not consenting or even aware about the virus; let’s call those folks with their name: sex abusers.

While Talluto is an extreme case, we read a lot about these “bug chasers” online but they are a good 95% fictional, and discussing them on media as if it were an emergency only diverts attention from the real pressing problem: countries who can’t afford anti-viral therapies, and the widespread stigma that makes prevention campaigns less effective.

So the nickname “Gifter” is self-mocking: Alex cannot transmit HIV because he follows treatment regularly, and being called that both online and in real life, is the tone-deaf response for those who still associate the term “HIV” with intentional infections, without being even a little ashamed.

Posted in: #fediblog, #internet

Why digital activism matters

The internet and social media give people the chance to share their ideas with all over the world, and they reach an audience that old-school street activism usually struggles to reach: people with physical, sensory or cognitive disabilities, for instance. Large in-person demonstrations are, for all practical purposes, off-limits to them, and anyone in that position who wants to take part has to fend for themselves, often at the mercy of public transport that doesn't always run when the events do. How often have you seen sighted guides for blind people, sign language interpreters, accessible minibuses or wheelchairs laid on for strikes or major rallies? Including nationwide celebrations, such as Labor Day or those related to European nazi-fascism liberation?

And yet who, more than disabled people, still faces discrimination at work? Who, more than them, is pushed to the margins under old and new authoritarian regimes, or even put to death? Despite all this, no official steps are taken to include this group as active participants in those events.

We'd love to be proved wrong, but as far as we know, events that are genuinely inclusive in this sense are few and far between. In recent years we've heard of a handful of Pride marches that provided a minibus for disabled people, and that's about it.

Online, on the other hand, it doesn't matter whether you're blind, deaf or living with any other kind of disability: with your assistive technology, simple or sophisticated, you can speak your mind as often and as loudly as you like, with the theoretical chance that the world will finally notice you exist.

That's digital activism: people who, on their own or with someone's help, show and explain their condition to the world, letting the public see what living with it is really like. Videos and photos, podcasts and blogs, to share what the mainstream media so often leave out.

Except that the privilege is only theoretical, because on social media you have to reckon with the algorithm: the fewer people follow you, the less visible you are.

Building a big list of followers isn't easy. More often than not you get there by knowing the “right” people in digital marketing and, needless to say, by paying. Or, best-case scenario, because someone who already has clout gives you a shout-out.

On top of that, the sites and apps that social networks run on don't always follow web accessibility guidelines, never mind the content people actually post. Ironically, even the most popular anti-discrimination pages regularly leave blind and deaf readers behind, because they don't describe their photos and videos or caption their audio. So where exactly is this all supposed to be heading?

Among others, we're talking about those self-styled “inclusive” communities that, in Italian, use the schwa “ə” as a gender-neutral ending, blissfully unaware that it has no Braille code and that screen readers can't pronounce it properly; or, worse still, use asterisks and @ signs, which sound even more of a mess when read aloud. Include some, shut out others, but hey, they're the inclusive ones! And that's us putting it gently!

The illusion of “success at your fingertips” falls apart just the same if you run a website you work your socks off on, trying to give it the best possible design and content, and pouring time and money into making it search-engine friendly. There too, you have to keep up with algorithm changes that can knock you from the top spot to the bottom of the pile in minutes, effectively making you invisible.

So at this point the whole idea of digital activism shrinks down to size: unless you're an individual or a company that already has a profile and plenty of money in the bank, it's really not worth thinking big. Better to settle for your own niche, small but mighty, relying on good old word of mouth and slowly getting known, without trying to become an “influencer” at all costs. That's if you want to stay honest. And if you're less fussy about regards? There's always performative activism!

Performative activism: what is it?

There's a very fine line between digital and performative activism, so you need a healthy dose of self-awareness if you don't want to drift from one to the other without noticing.

• Digital activism: championing a cause you believe in, using new technology. Providing information, supporting events (fundraisers included), using the web to get more people to meet in person, and putting all your effort into the cause itself (obvious? No, it isn't). Digital activism gets real results.
• Performative activism: riding on a social cause, heartfelt or not, to gain visibility as a company or an individual. The method, the medium and the truth of what gets posted don't matter. The effort goes into yourself rather than the cause, and yes, there are real results, but only for your own benefit or your brand's.

Truth be told, it's nothing new; there are forms of performative activism dating back to before social media that still managed to do enormous damage.

Performative activism by email: chain letters

We're talking about the Stone Age of online communication, when newsgroups and email were the only ways to share anything.

A textbook example is the case of George Arlington and his daughter Rachel. It started in 2000 and the email kept doing the rounds until 2010; here's the full text:

Subject: Leukaemia – Please read below

If you delete this, you really have no heart.

Hi, I'm a 29-year-old father. My wife and I have had a wonderful life. God chose to bless us with a beautiful little girl. Our daughter's name is Rachel, and she is 10 years old.

Not long ago the doctors found cancer in her brain and in her little body. There is only one way to save her: an operation. Sadly, we don't have enough money to cover the cost. AOL and ZDNET have agreed to help us.

The only way they can help us is this: I send this email to you and you send it on to other people. AOL will track this email and count how many people receive it.

Every person who opens this email and forwards it to 3 more people will give us 32 cents.

Please help us

Calling a message like this “performative activism” may be a stretch, but it's a primitive form of it: “Never mind how plausible it is that a third party would donate money just because I forwarded an email, I'll send it on. It costs me nothing and my conscience is clear. What harm can it do?”

Shame that George and his daughter never existed, and too bad if, thanks to the signature at the bottom of the email, your workplace unwittingly ends up vouching for a fake story. That's exactly what happened to the Italy's financial police as well as same nation's public health institute, after some of their employees forwarded the appeal in good faith, complete with signature, phone number and address, landing their employers in hot water as they were suddenly bombarded with calls and messages about a little girl who didn't exist.

You drive half the world up the wall, you end up losing your job, but hey, at least your conscience is clear because you helped someone. Well, no kidding! This kind of email always plays the guilt card: “if you delete this you have no heart”, “I bet 93% of you will bin this”, and so on and so forth.

We have learnt of genuine appeals too, ones that kept doing the rounds long after there was anything left to help with. The case of Craig Shergold is a prime example.

In 1989 Craig, a British boy of nine, was diagnosed with a brain tumour, and an appeal went out asking people to send him get-well cards so he could make it into the Guinness Book of Records. The appeal worked like a charm: by 1990 he had received more than 16 million cards, and around 33 million by the following year. In 1991 Craig had an operation that removed the tumour, and he recovered.

The chain letter, however, never got the memo. It went on spreading for decades, mutating along the way: the name became “Craig Shelford”, “Greg Sherwood” and countless other variants, the get-well cards turned into business cards, and the Make-A-Wish Foundation, which had never had anything to do with it, found itself dragged in against its will. Guinness ended up scrapping the category altogether to try to kill the chain off, and by some estimates around 350 million pieces of mail landed on the family's doorstep. The Shergolds had to move house, and as an adult Craig's only wish was for the mail to stop. He died in 2020, at the age of 40.

A case of performative activism by mindless forwarders, let's not mince words. Why anyone would bother to tweak and recycle an appeal that had long since run its course, Zeus only knows.

Luckily, these days Rachel and Craig are only remembered as examples of how NOT to use email, but with the arrival of social media, performative activism has gone from bad to worse.

World-saving shares and copy-and-paste posts

“I bet you won't share me because I'm disabled”, “if you have a heart, type amen and share”, “copy and paste this message on your wall in solidarity with [random condition or disease]”.

Plus all those messages you're supposed to copy and paste to reject Facebook's latest far-fetched new rules.

The “amen” posts and the “I bet you won't share me” ones often come with photos attached, more often than not lifted from the internet without the consent of the people in them. Including pictures of people who have died, yes.

We could give a million examples: a straight couple who voted “yes” in Ireland's same-sex marriage referendum, used as the poster couple for the “traditional family” by the “no” campaign; photos of celebrities, living or dead, passed off as robbers, pensioners or migrants to stir up outrage.

There are several cases where photos of Black actors and white serial killers get attached to stories of social injustice and posted on satire pages, only to be picked up by far-right profiles to push the “Black people have more privilege than white people” narrative, banking on nobody recognising the celebrities in question. And sure enough, the keyboard warrior falls for it hook, line and sinker.

Animals and fake news

Performative activism about animals deserves a mention too: it's not the first time videos have gone viral of a bear “befriending” a dog, or of animals reacting in ways the online crowd finds “hilarious”, only for real scientists and animal behaviour experts to have to explain that no, that dog isn't playing at all, it's pestering the bear, and the bear can't wait for the intruder to clear off.

A cartoon version of our relationship with animals, pets and wildlife alike, which ends up harming the very creatures people claim to love. Since they can't speak up for themselves, they become the unheard victims of human narcissism, all the way to extreme cases like that of Freya, a female walrus killed by the Norwegian authorities in the summer of 2022 because she had become a danger to herself and to people, stressed out by getting far too used to the crowds who photographed and filmed her round the clock.

“Social experiments”

The video of the guy holding a sign saying “I'm HIV positive, hug me”; influencers who hit the streets and film passers-by after asking them some bizarre question. Seriously? And just how good are their intentions?

That's how performative activism works: you're the main event, and the social cause you claim to care about is just a side dish. Who cares if, to grab a bit more attention, you trampled all over people's most basic right to privacy by filming them without permission?

Every social platform is full of people slapping on rainbow or peace flags, taking selfies with banners, and sharing tear-jerking texts and videos, all of which shot through the roof after the Covid lockdowns. But how much of what they post is actually true?

Of all the videos of people filmed without consent, one in particular struck us: the one featuring Maree, an Australian woman who was handed a bunch of flowers by a 22-year-old man in a Melbourne shopping centre while his friends filmed her. She had no idea she'd ended up in a video racking up millions of views on TikTok and, quite rightly, said she felt “dehumanised”. Turned into a product by an influencer who is really selling himself and making money through sponsors, and who, on top of that, passed off her obvious annoyance as being moved to tears.

Even though there was nothing compromising in the video, it can't be pleasant to have your face splashed across the world when you're an older woman who has never once set foot on social media. The whole episode was billed as “kindness”, but the guy in question doesn't have the faintest idea what the word means.

Shock therapy

Enough ink has already been spilled over it and we don't want to give it any more airtime, but there's the business of Fedez at Sanremo 2023, Italy's biggest music festival: the rapper and influencer let one of the competing male singers, Rosa Chemical, kiss him on the mouth live on stage. Rosa Chemical explained the gesture by talking about “sexual freedom”, “trying not to hide 'polyamorous' relationships” and “an act of friendship”. We're actually on the same page as them when it comes to sexual freedom, but doing activism this way draws attention to yourself rather than to the message you want to get across. Style over substance.

Not that we don't understand why they did it: as a sort of “shock therapy”, a jolt to make people realise “this is part of the real world too, like it or not”. The usual idea of wanting to “shake things up” in an attempt to change a status quo you're not keen on. A peaceful notion of “revolution”, but one that doesn't always deliver the results people hope for.

So, are we activists?

Absolutely not, and we don't call ourselves that. We could list websites and groups fighting HIV stigma that regularly organise in-person events and travel up and down the world, taking to the town squares; we haven't been able to afford that yet. Not together, at least.

That's why we don't want to be called “activists”; we see ourselves as just two amateur bloggers trying to tackle a difficult subject with a lighter touch. Seeking attention? Never! Posting photos of ourselves with our articles? Even worse. We may well be an empty box, and we're fine with that.

Let's be blunt about it: it would be the easiest thing in the world for us to fake a sex act, French kiss included, on a live stream. With “positive” and “negative” written across our backs, everything on show and no condom in sight, under a banner reading “I'm on treatment and I can't pass on HIV”. But all it would do is draw in the voyeurs and the moralisers. Is it worth it? Definitely not. We'll leave those games to people who are already rolling in money and can land another gig the moment they lose one.

We have no interest in parading ourselves around the internet, posting every breath we take. If someone reads our posts, we want it to be for what's inside. As for the wrapping, you can safely ignore it, thanks.

Posted in: #fediblog, #personal

Out of the blue

Back in the early days of our blog, someone reached out to us through our Facebook page, back when we still had one.

“Interview request for a personal blog,” and our first reaction was: why not? Bloggers, seasoned or not, tend to look out for each other. We might even interview you in return and publish it.

A few emails back and forth, and then we politely set some ground rules: send the questions to this address, and we'll decide together whether and how to answer them. Until you hear back from us, though, please don't schedule any post. Thanks.

Questions we received

The questions finally arrived. We won't publish them, because airing material that was sent privately, without formal permission, is not only deeply disrespectful but also against the law. Still, we'd like to give you the gist.

“How did you meet?” That's the bare minimum for an interview. How else are you supposed to introduce yourself to another blogger, if not with a bit of backstory?

“Do you live close to each other or far apart? Do you see each other in person?” Right, this is where our guard starts going up: our private life is our own business, and for this website's purposes, whether or not we meet face to face is pretty much irrelevant.

“How have you dealt with each other's problems?” The fact that one of us is blind and HIV negative, and the other is sighted and HIV positive, is not something we've ever hidden. But while we talk about it openly in real life, in this particular space we would rather not have brought it up.

Apart from the fact that there are virtually no images here, we'd have no reason to broadcast the sensory condition of the person who came up with this project in the first place. The other author's HIV status, on the other hand, is still a defining factor, because he experiences HIV stigma firsthand.

“How does a person without sight deal with HIV, and vice versa?” This one could actually have been an interesting question, a way to show how stereotypes and stigma hurt everyone, whatever condition you're living with, directly or not.

But the point still stands: we're not a white cane and a virus on legs. We're two amateur writers, and if the plan is to devote an entire chapter to disability and assorted illnesses, thanks, but no thanks. We don't do pity, not offline and not online.

“What's it like being friends as a gay man and a straight woman?” And here, if that's even possible, the bar drops even lower: what do you think it's like? Spoiler: we've never given it a second thought, because we've always treated each other with respect.

We held our tongues, but we had a comeback ready: “If a man and a dog can form the deepest of friendships, why on earth shouldn't two humans?”

“Have you ever fallen in love with each other? Maybe the HIV-based bond between your characters is a way to make up for an unrequited love that's eating you up inside?”

We were too polite to say it in private, but this is our house, so here goes: go take a crap!

A good bowel movement does wonders for your health, guaranteed. We have absolutely nothing to declare on the matter, because if you think there's some dream or void of ours hiding behind a few works of fiction, the one with something pent up is you.

Writing can help people work through pain in certain circumstances, no question about it. But unrequited love is NOT our story, so if you need to relieve yourself, the bathroom is down the hall on the right. And please, flush when you're done!

Turn off the light and leave the window open to let some air in. Everybody's poop stinks. Thanks.

The comeback

However blunt, and at times downright rude, we may be on our own turf towards people or situations we don't care for, when we deal with the public, courtesy is non-negotiable. This time was no exception: we replied with a simple “No, thank you, we're not interested in that kind of narrative.”

The comeback was swift: according to our would-be interviewer, the tearjerker angle is the most loved and most clicked-on narrative on social media, so going along with it “just this once” would have benefited us too, if the interview went viral.

Exactly: IF. Because that's far from a given!

That kind of narrative is fine if the interviewer is after visibility at any cost. We, on the other hand, want readers to grow attached to our characters rather than to us, and the only way to rise to that challenge is to show up every day and keep getting better, without falling for the cheap allure of the fleeting world of social media.

It's all too easy to outrage people, tug at their heartstrings or make them laugh with emotionally charged stories. But just like in our real lives, nothing has ever been handed to us on a silver platter, and every time someone appreciates our work, it feels earned. Quality over quantity.

We partly agree with the point about adapting. You can't always show up exactly as you'd like. An athlete who dresses up for a wedding might feel out of place, but once the party's over, that's the end of it. Bending to a toxic narrative to stroke a stranger's ego, however, could tarnish our reputation for good. The internet never forgets, and what people love about you today could come back to bite you tomorrow.

It wouldn't have cost us much to make up a story; we'd just have sent out one of our many creations. We even had the title ready: “A Viral Story.” And it would surely have been a hit: the gay HIV-positive guy meets the straight, HIV-negative blind girl and falls for her, and she loves him back, complete with her saying “you're the light of my life” and him saying “you're my cure,” all topped off with little hearts and a built-in marriage proposal, flowers, hugs, tears, the whole nine yards. And if we ever did write a story like that, it would come with a price tag, say 5 euro cents a word (in which case we'd make it as long as humanly possible).

But that's just not our style. We want to stay true to ourselves, even knowing that the world at large has no idea who we are. Oh well. But if someone wants to interview us, it's on our terms or not at all. Good fences make good neighbors.

Accessibility, inclusion, guidelines

Too many people keep on talking about accessibility and inclusion but how many times do these words come true?

Plenty of easy or complex rules concern accessibility both in physical and digital world, often we also encounter endless debates about which terms should be used not to offend marginalized people, and especially this topic turns into grotesque. But frequently these discussions involve everyone, except those who rely on accessibility for their personal needs.

Think of 80s and 90s advertisements against AIDS transmission: they were conveying a fear message rather than awareness, because they were created by good communication experts who did not live AIDS firsthand, so general panic has been the evident result.

However, if early AIDS activists could contribute to these campaigns, they would have been more effective and avoid to develop a stigmatizing culture.

Unfortunately it seems that despite being often made with underrepresented groups’ advice, few written laws or guidelines make an essential statement come true: “nothing to say (or to do) about us, without us”.

When groups don’t talk to each other

This isn’t the right place to delve into the specifics of physical or digital barriers, but let’s look at a prime example of what happens when different work groups fail to communicate: in the case we talk about, “nothing about us without us” principle doesn’t apply to a single “category” of people but to an entire sector: information technology.

Without getting bogged down in technical jargon, what does digital accessibility legislation say?

Any information conveyed through images must have an alternative text format to make it accessible to people with visual impairments.

European cybersecurity regulations, though often explained in a vague and non-technical way, require that sensitive banking information (like security codes and credit card PINs) be displayed in a format that cannot be copied, pasted, or intercepted by third parties.

As a result, most websites and smartphone apps display this information as images that are only visible on screen for a few seconds, completely undermining accessibility regulations.

So the outcome is a paradox: if you can’t see, to obtain this information, you have to rely on sighted people who are quick readers and whom you trust implicitly (how do you measure that level of trust?)

The not-so-distant risk is that this sensitive data could end up in wrong hands, all because two groups of people responsible for drafting laws didn’t communicate with each other.

You are forced to compromise your privacy because someone assumed they could protect it solely through the use of sight. Epic fail.

Don’t talk about us without us!

Despite being essential for a peaceful life, “don’t talk about us without us” can be a very difficult goal to achieve; however we should do our best to make it true in any daily action, including virtual activities such as writing and social networks interactions.

Although we share ownership of this blog, the concept of “positive world” was Elettrona’s brainchild. As an HIV-negative person she couldn’t fully grasp the experience of living with the virus, so the “nothing about us without us” concept was clearly disregarded.

Let’s face it, no one knows everything about everything, especially something as complex as HIV. But it’s pretty clear that the best books are written by people who really know what they’re talking about.

There’s no plan on writing a book anytime soon, but we’re reading a ton to learn as much as we can. It’s easy to tell the difference between someone who just reads a few articles and someone who’s actually lived the experience.

Like, if you’re writing a book about ancient Rome, you can’t exactly interview Julius Caesar. But if you know someone who lives in Rome today, they can show you around and provide a real feel for the city.

That’s what we’ve done with HIV. We’ve talked to a lot of people who are HIV positive, and we’ve read tons of stuff online, even from subcultures we don’t agree with at all.

In our case it’s been a real challenge as our fantasy world is reversed – people with virus ostracize anyone who has an HIV negative test, so every perspective we learnt about, had to be studied and turned upside down.

This meant a lot of writing exercise in order to save what we liked and discard characters or stories not fitting with our values.

Then “day of reckoning” came and we finally shared our project with some HIV activists. We needed their endorsement, conscious that whenever they disliked our satire approach, we would have given it up because our own experience with HIV is not the absolute truth, the fact one of us lives with it means just a single point of view.

Fear of failing brought our self-esteem down , until an Italian association of HIV-positive LGBT people enjoyed our initiative. To be precise, we had a long conversation where they complimented us, but also gave us some constructive criticism which became a great contribute to our growth.

Having the HIV virus speak in human language was a risky experiment. At first, we thought of turning it into a kind of pet for our human characters, but giving it a voice proved to be the most intriguing option. It felt fresh and original compared to other stories we’d read.

How much can HIV see from the inside? This symbiotic relationship offers endless narrative possibilities, far from the usual clichés. Thanks to this talking virus, we’re constantly challenged to consider different perspectives, reminding us that we’re not alone in this world.

DISCLAIMER: this post has lots of psycho-drama and explicit content. Readers have been warned! Posted in: #fediblog, #hiv, #personal

Risks and fears

Someone on line asked me: “Is there a situation where you have taken a risk and never regretted it?”

I gladly and explicitly answer: the risk I never regretted was when I stopped using condoms with my husband.

I can't deny I spent months in fear before this decision: who made me do it, could I continue as I was used to? Impossible!

At the time, 2017-18, I was seeing this strange acronym going around the Internet: “U=U,” “undetectable = untransmittable.” Complex concept for those unaware of HIV but I had already understood it referred to the quantity of virus in my blood.

A fundamental discovery that could have stopped the spread of HIV in a few years and yet at least in Italy it did not have too much media coverage, in fact only a few HIV activists were talking about it.

Then my doctor would throw in, “yes, that’s right, it’s proven by many studies, but I wouldn’t risk it if I were you.”

For me and my beloved HIV negative man, there were more doubts than enthusiasm about what doctors and international associations were saying regarding the lack of sexual transmission due to antivirals' effectiveness, and when you know about a new protection strategy but are afraid of the unknown, you may as well go on with your usual life however, the acquired awareness has already torn you out of your comfort zone by making you feel, even physically, a discomfort you didn’t even feel before.

Realizing how this matter threatened to send us into a crisis, we allowed ourselves the classic “pause for reflection,” which if for others it means politically correct version of “breaking up”, for us, on the other hand, was true reflection on a situation we could not and would not ignore any longer.

Had I been more of an asshole, I would have sneaked the condom off (stealthing) that, however, is sexual abuse and would have resulted in a catastrophic breakup because I would have betrayed him in the worst way, with a real sexual assault.

HIV and condomless sex: science before U=U.

The virus was not yet with me when between 2007 and 2008 there was talk of studies first in Switzerland then in Canada confirming the impossibility of transmission to the negative partner of a serodiscordant couple. There, however, the sample focused more on hetero couples seeking pregnancy so, more than that, I didn’t delve into it. There were antivirals though compared to current years, 2007-2008 is a geological era ago.

Even at the same time a newspaper article had come out, which I can’t find now, in which they talked about a gene being isolated in people exposed to high HIV risk and who remained negative; “test available within two years,” the Japanese said. And I dumbly thought “come on let’s hope it comes out soon worldwide so I can do it too and if I’m protected I don’t have to worry about AIDS anymore”-I barely understood the difference between HIV and AIDS.

Come 2009, then 10 and 11, that story went under the radar; in 2012, however, PrEP pre-exposure prophylaxis started coming out in the U.S. and I, still negative, was reassured: OK a few months of patience and it will come to Italy!

Months however became years because this therapy for negative people who want to avoid getting infected came to Europe in 2016 but I had already been HIV positive since 2013 after an abusive relationship.

I was in the worst of situations even though, had it been up to me, I would have gone on PrEP as soon as it came out even if it meant being the first to test it on myself. How fucking scared I was of AIDS in my teens, to hell with all of them and their serophobia.

U=U: the end of paranoia.

Between 2007 and 2016, three studies involved several gay and hetero serodiscordant couples in which the HIV-positive partner was on antiviral drugs, and in no case did transmission from sexual contact without barrier protection occur. Since then gradually people have been talking about it on specialized forums, first half-heartedly then increasingly loudly.

U=U, undetectable viral load, I thought I was hearing an unfamiliar language because still in 2017-18 in Italy this evidence was not widespread. The Italian scientific community only made it official on November 12, 2019.

I, however, had grown tired of standing behind the condoms because for years the test results had been speaking very clearly: first “less than fifty copies,” then “undetectable,” the virus inside me was always relaxing and probably even saying to the lab technicians, “do me the favor of telling my human that I’m not going to touch his husband! He still doesn’t get it!”

As a poz man, I was unable to hear what HIV was saying to me, let alone neg folks in the hospital! So I went on for quite a while longer keeping the “condoms” option in the grocery note even though, while not letting it weigh on me, I was growing impatient: living together planning to get married, having the scientific evidence U=U at home but behaving as if we were in a serodiscordant couple in the early days where the virus was still scary.

Freedom

If sneaking off condoms is abuse, “accidentally” forgetting to buy them isn’t! Shit happens!

So, that night I just inserted my hand under the pillow and said, “oops, yeah, darn I thought there was still one left, I actually felt like I forgot to buy something! Now what do we do?”

I was comfortable because I had consulted with the doctor earlier, “we would like to get married and experience an easier intimacy but just in case, I would like my husband to go into PrEP; what do you think, doc?”

To make a long story short, the doctor replied that since I have an undetectable viral load and our relationship is monogamous, pre-exposure prophylaxis is unnecessary; so I gave my partner a provocation that was a little bit ironic a little bit not: “perfect, then if you cheat on me and add an extra virus to our family, don’t blame me.

What do we do, give it up or U=U? “The second option,” he replied. And I was being a jerk as usual: no, I didn’t understand, the second option that is? I want to know what you decided. No shortcuts or unspoken words. Explicit consent or dissent.

Only when he looked me in the eye and said “U=U” did the evening go on. The following days were not easy because – I admit – he conditioned me a little bit with paranoia “what if you got the virus raising up in your blood and you don’t know,” “what if medicine decided not to work, science I don’t know if and how much to trust, there is always bad luck.”

How could I tell him “if you don’t trust the doctor trust me” if it was a situation I had little control of myself as well? To hear him tell it, they should have invented a device that could be hooked onto a finger (which one of the 21 of them?) that would monitor viral load minute by minute.

OK, now we are both laughing about it however then I would have felt like throttling him and being widowed early because it was starting to bring back my fears too, so I kept myself ppatient by letting him wait for the window period and get the HIV test while rationally aware myself first of what the outcome would be.

Finally with his negative result in hand I took him to celebrate at a nice place where we had appetizer, first course, second course and dessert both of us. That is, three with the virus.

We were free and this state of mind would last forever, with the condom to be used only if we voluntarily chose it. I most of all felt as liberated as I had ever felt before.

At the end of the evening, in a coincidence we will never forget, our car's radio played a song that I still carry in my heart to this day: “my freedom” by Zucchero. Song on which I finally proposed to him and we ended up like two jerks singing “my freedom talking, my freedom walking.”

NOTE: I chose Zucchero’s song for the English article as it’s about a guy setting free from an abusing relationship and was suitable for me, my husband and our past HIV fears. But the true song playing that day was in Italian and is a sort of hymn to freedom.

It’s now been years since the never-purchased box and we got married in the fall of 2019; my husband’s still HIV negative, he’s still putting up with me, and I’ve never regretted looking at the pharmacy sign that day and moving on. Then, truth be told, during the Covid emergency we became more afraid than before and stocked up on condoms, but the awareness we gained also allowed us to ironize about preventing the two viruses together: where does the mask go? Where does the condom go? How does your face look? And mine?

Since meeting my HIV virus, I swore to myself that I would always use condoms even in a long-term relationship. But what about now? Yes, come on, but in 2013 the situation was different and U=U had not yet been discovered.

Okay, I would have liked to close this post talking about the song but I don’t feel like it because the risk is still high: true that we U=U poz folks are the safest people, in fact we periodically get tested for all sexually transmitted infections. This is also true for neg people under pre-exposure prophylaxis (PrEP) since the therapy in question involves regular check ups, from Chlamydia to syphilis and so on.

The reality, however, is complex, and the circulating virus is not something to be taken lightly. Especially here in Italy there is poor information about U=U and PrEP, years of stigma shared by wrong communication campaigns is still causing problems so much so that screenings for sexually transmitted infections are still fully paid for by patients because sexuality is still seen as a whim and not a human right; for hetero, gay and any involved group.

Then condoms still remain a necessary aid to protect yourself (and others) in case you are unaware of your health status. I chose to share my experience just to make the point that, today, HIV prevention no longer comes through physical barriers alone – and stigma has never been a protection method.

A blog we follow, @futuroprossimo@mastodon.uno, one day asked:

Science will reach milestones unthinkable today,[…] what would you like to see? A world without disease, first alien contact, a green Earth? […]

We would “only” like a world where no one ever has to feel inferior to others and apologize to anyone, simply for existing.

According to certain people across the Internet, a person with a disability and someone living with HIV shouldn't use humor regarding their own conditions. Is it really possible that we still have to justify ourselves for existing and trying to live a “normal” life?

Tired of repeating the same story

For years, everywhere we publish a content, we have always clarified reasons behind our writing project: fighting against HIV stigma through satire, attempting to target those who fuel hatred and discrimination to any degree.

We are inclusive, which means no one is exempt from our mocking: media, institutions, and especially ordinary people who, in the second decade of 2000s, still hold an 1980s mindset regarding HIV and AIDS because they ignore scientific progress and discriminate against people living with HIV within families, relationships, at work, at school, and even in healthcare settings.

We hoped that the advent of COVID-19 and related restrictions on social interactions might foster greater empathy toward those who have been wrongfully “kept at a distance” for forty years. Instead, we are forced to admit that mistrust and suspicion has grown even further in the long term, and people have become even more hostile.

It doesn't take much to understand our reasoning; one simply needs to understand the role of satire from antiquity to the present day: calling out political and societal flaws through humor to make the public reflect, often through a bitter laugh. Satire must target the “powerful” categories, the most privileged, not vulnerable individuals.

Mocking people who are already targets of contempt and stigma is a cowardly act, plain and simple. Furthermore, we clarify that the “powerful” —beyond politicians —, also include circumstances capable of negatively affecting human life, including illness and death; in fact, irony serves to exorcise them.

Between satire and bullying

Unfortunately, for the general public, it is difficult to distinguish between satire and bullying because many web and TV outlets hide behind satire to promote vulgarities like the f-word. It is quite a different matter when that same word is used ironically by a gay man making fun of himself. Are offenses in intentions rather than in words? Let those who live with the condition and have suffered hatred for centuries decide. Freedom of expression does not mean freedom to offend—under any circumstances.

Bullying is extremely easy. Satire, on the other hand, is complex because it requires a shift in perspective: the targets of mockery must be all the self-proclaimed “untouchable” people who indulge in fueling stereotypes from their privileged positions, whatever that may entail.

For our part, we created this blog to exorcise our respective conditions that have been stigmatized since time immemorial.

We are here, we exist!

Elettrona in real life is Elena; she has been blind from birth, is HIV-negative, and is the ex-partner of a man living with HIV (a condition that is public knowledge). Therefore, she has always stood up openly when discussing the infection.

A public condition inevitably brings stigma, even from certain alleged friends; thus, Elettrona developed the ability to respond with witty irony and tell real friends from fake ones.

“Bury them with laughter”? Not quite. Even if one responds with irony, it doesn't mean your words have stopped hurting; it simply means realizing that it's not worth feeling bad over trash like you.

Alessandro “Gifter,” a sighted person living with HIV, made a different choice by disclosing his condition only to those directly around him: his husband, of course, close friends, family, colleagues, and healthcare workers. However, (at the moment) he has no interest in large-scale public activism.

Will he do it? Will he not? Whichever decision he makes on the matter should be respected for what it is.

So do not accuse us of making satire against people who suffer from stigma—if you do, you are stating a falsehood. We were clear on our About Us page, and if you criticize us without going in deep, the problem is not ours.

In fact, let's lay it out clearly: we are convinced that what destabilizes you is the fact that we do not fit the stereotype of a blind person in perpetual self-pity, nor a person living with HIV always remaining silent, nor the frontline activist attending every single rally dedicated to the virus.

Are we harmful performative activists? And why? We are simply trying to contribute to a cause close to our hearts within the limits of our capabilities. Therefore, if anyone wishes to criticize us, feel free to suggest an alternative to what we offer—we would be more than happy to discuss it.

PS: If we respond with a laugh to someone who offends us, it isn't because we got the joke, but because we feel sorry for them and consider them too foolish to realize they are harassing us.

We close with a piece of advice: haters, please get a life and leave us alone.

DISCLAIMER: there is irony in this post, but also a fair bit of Drama Queen behavior: readers have been warned.

Posted in: #fediblog, #hiv, #personal

POSITIVE change

Right now, it’s not “Gifter” speaking, but Alessandro, sharing a post about my experience as a person living with HIV to dismantle the prejudices of those skeptical about my participation in this blog, which started as a satirical project.

Negative event? Yes. Devastating news? Absolutely. But since when “positive change” comes along you just have to deal with it, it's worth acknowledging and learning to live with it as peacefully as possible over time.

2013: Think twice!

I listen to all kinds of music because I'm passionate about it, but there's one particular track I can't bring myself to face: “Think Twice” by Celine Dion.

Yet, back then, I used to adore this track because it was the one that brought me and Alberto together—the great love and mistake of my life.

At 32, I should have already been an adult, but instead I fell for someone who promised to be faithful while being a serial cheater. I kept forgiving him even though, with the benefit of hindsight, the signs of an unhealthy relationship were glaringly obvious.

Eventually, though, one day—finding yet another stranger's sock under our bed, I packed up all his stuff and left his suitcase outside the door.

If I had found used condoms instead of socks, it would have been disgusting, but at least I would only have had to deal with his cheating. Instead, I was forced to face a “positive change” I gladly would have avoided.

I even managed to grow to hate “Think Twice.” Fortunately, that relationship didn't drag on much longer, but Alberto’s scenes outside my house or on the phone begging, “Alex, please forgive me,” with that song playing in the background, repeated themselves from mid-January 2013 until March—and I'll skip the details about Valentine's Day, when he risked me filing stalking charges against him multiple times.

So now, just the opening notes of that song make me as irritated as when a solicitor rings the doorbell hoping to sell me things or preach improbable religions.

I’ve never allowed myself to do that to anyone at the door, but I did throw more than a few buckets of water out the window at Alberto when he came to bug me. In the middle of winter, that’s not ideal, so if he caught a nasty cold, he brought it entirely upon himself.

On the bright side, during that same cursed period, I had caught a terrible flu myself without even being hit by any buckets of water—or at least, that’s what I considered it to be. Relationship over, stress, but with a pill and some rest, everything disappears.

As soon as I recovered, I went to the dump to throw away the last pair of underwear Alberto had left in my drawer, perhaps to delude himself into who knows what. But the old Gifter—or rather, the old Alex in this context—once he decides to close a chapter, he closes it with no room for second thoughts. I was still unaware that, objectively speaking, you can't just throw away all the “gifts” left behind by an ex.

2013: Rite of Passage

When you get past the climax of post-breakup stress, what do you think? “Cemeteries are full of irreplaceable people,” there might be someone else to love, and you realize that at 37 maybe, just maybe, it's time to “get back on the market” so you don't end up like an austere 19th-century widow.

So, with the idea of starting to meet people with a classic “we'll see,” I made an important decision: to get tested for sexually transmitted infections, including HIV, because I felt in perfect shape. However, knowing that I had been monogamous while Alberto hadn't, I considered myself sufficiently vulnerable: in the worst-case scenario, I would at least safeguard any potential new short-, medium-, or long-term relationships.

We gay men have developed a certain awareness over decades of HIV or AIDS being primarily associated with our sexual orientation: viruses don't care if you're monogamous or polygamous. All they need is an open door to enter, and they don't give a damn if you make love without protection because you “trust” your partner, or if you're with a completely anonymous stranger you only care about until you're dressed again. Viruses walk into your house without knocking or asking, “May I?”

To be fair, it's the same for straight people too. However, the latter most of the time feel lulled into the media's “comfort zone” regarding risk categories. Even if the serial cheater is the “next-door neighbor” who devotes themselves to home and family, the average straight person often fails to consider the possibility of STIs, doesn't get tested, and then tragedies happen—like a husband or wife with full-blown AIDS after years of silence, or an HIV diagnosis discovered during a pregnancy.

I don't care if I sound brutal, but since life pulls no punches, I don't pull mine when expressing my views on these topics.

With the tests, I planned to officially close the Alberto chapter, and I even joked about it with my best friend: “Come on, I can't be unlucky enough to be cheated on and HIV-positive? I can handle the betrayal, but I don't know about HIV.”

Adriano, however, is much more astute than I am and dropped the hint: “I'm sticking to you like a barnacle because that flu you had a while ago didn't sit well with me at all.”

Who even remembered that flu? Certainly not I! But like a good “leech”—as I still call him today—he never misses a single sign of vulnerability from me, and even back then he said, “The two of us can handle the weight of any misfortune. I'm with you.”

He’s been close to me since we were teens; he was the first person I confided in that “I didn't like pussy” (boy, did I phrase things poorly back then). That’s a friendship spanning decades. We’ve been through so much and we feel completely secure — there’s not even a risk of stealing each other's partners since he's straight!

2013: The Answer

The flu — what could it be? I had already read on the internet that the “conversion” from HIV-negative to positive could trigger flu-like symptoms, but I never wanted to let myself get influenced by that. After Alberto, I hadn't allowed anyone to approach my life until I was certain of “being CLEAN”—which was how I defined being HIV-negative at the time. So, I had my blood drawn without any dramatic thoughts. All in all, I was calm: I had “a clear conscience,” “I had behaved well,” the test was just a precaution, and generally speaking, “AIDS only gets those who aren't careful.” I too was a victim, in some way, of poorly executed media campaigns.

The screening was for all sexually transmitted infections; I hadn't gone to one of those clinics offering anonymous HIV-only testing, and I waited for the results.

I remained at peace until my cell phone rang: the doctor wanted to “see me to discuss the results.” At that point, I even snapped at the receptionist: “For fuck's sake, young lady, don't beat around the bush, just tell me I'm HIV-positive and hang up!” She was formal yet polite: “Sir, please have patience, I am not authorized to give you information over the phone, I kindly ask you to make an appointment with the doctor!” Friday, May 3, 2013—fine.

Adriano accompanied me that day, the only person I could trust, and he waited outside while I was shut in the room talking with the doctor. “All negative, except for HIV, I'm sorry.” No, fuck no! Me, HIV positive? No! Alberto couldn't have done this to me!

Receiving news like that shatters every certainty you have, but everyone reacts in their own way: at that moment, I no longer had a doctor in front of me, it wasn't a clinic anymore; I felt as though I were sitting at my dining table at home across from Alberto, and all that was missing was Think Twice playing to make me completely lose my mind.

Treatment and Psychotherapy

That doctor had (and still has) the patience of a saint. Only once I had calmed down did he explain the whole roadmap ahead. I was too terrified of the “aftermath,” and I still remember saying, “Doctor, please, if you give me a treatment that doesn't turn me into a walking ghost, I'll take it.”

He did much more than that and gave me the opportunity to undergo both antiviral and psychological therapy. Thanks to that, I have recovered my balance and have no trouble talking about it openly.

Alberto? Naturally, he tested positive too, and to this day I am convinced he wasn't aware of it. Just as he paid little attention when driving, he was the same way with sex, and the consequences showed. Yet, over time, I let go of the resentment toward him because hatred wasn't making me feel well.

Despair and Loneliness

Psychotherapy lasted a year and a half. The first few months felt completely useless to me because I loathed myself so much that I locked myself indoors for days without taking a shower. Adriano, for his part, came to visit me, but less and less often.

“You don't want me as a friend anymore because I have HIV,” I wrote to him one day, but his response was merciless: “If I don't like coming over to your place, it's because you smell like a goat. Do you think you're going to scare off the virus like that? More likely, I'm the one who'll leave! Keep going like this and HIV will remain the only one sticking by your side, but only because it has to and can't detach from you or it'll die.”

No professional will ever say a line like that to you, but a childhood friend will— especially when he watches you self-destruct and doesn't know what else to do to help.

To top it all off, there was the shock therapy from the psychologist, to whom I confessed that I had spent the summer of 2013 figuring out the best way to die before the virus killed me.

He confronted me head-on: “You're describing so many ways to die. But if you spend days thinking about it without actually doing it, I gather you don't really want to kill yourself. What do you say? Let's start from here: you don't actually want to die.”

“Of course I don't want to die,” was my reply, “but it's HIV forcing me to think about it! At 37, an expiration date! It's not fair!”

Adapting and Living With It

That holy man let me rant nonsense nonstop, and then started telling me the exact words I had already heard from the doctor: “It's no longer a death sentence,” “take your therapy regularly,” “have as healthy a lifestyle as possible.” It took a long time, but eventually, besides making peace with HIV, I made peace with my own self-esteem and eradicated the internalized stigma and homophobia I had carried inside for years.

Chapter closed on hating the infection too: I am now emotionally at peace, to the point where the virus is part of my family just like the cat, and I take care of it by staying regular with my pills and medical check-ups.

I should exercise more, but me and my HIV are like this: whenever one of us wants to go for a walk, the other coordinates with Jupiter Pluvius and makes it rain. Like human, like virus! TV series, couch, horizontal activities! At least, being in symbiosis, there’s no risk of HIV rooting for the opposing team while we're watching sports.

I admit it, after all the trouble it put me through just to get welcomed in, I've actually grown fond of this virus. It forced me to question far too many certainties built on nothing, but in the end, it allowed me to find much firmer ones—including some solid friendships and loves that perhaps were there all along, but I couldn't see them.

Ugly to say perhaps, but without it, I probably wouldn't have befriended @elettrona, the creator of this blog, who shares this experience with me from the opposite perspective: that of an HIV-negative person and former partner of a man with the virus.

What more could I want? To go back to being negative? At the moment I don't think about it because it's not possible, save for those leukemia patients who receive stem cell transplants that the media occasionally reports on.

It would be enough for me to keep HIV at the Undetectable = Untransmittable threshold without having to take medications; research is focusing in that direction, so it's just a matter of patience. For now, my desire is simply to live and enjoy it to the fullest—I've already wasted too much time on bullshit!

In closing, I reassure readers that I have no intention of writing books and profiting off my experience; I just want to tell my story to help defeat the stigma.

Goodbye, WordPress

We've left the WordPress content management system after a long reflection period (from autumn 2024 onwards), for both technical reasons and corporate policy, because WordPress's founder has been acting with little transparency towards the community of individuals and businesses who, over more than twenty years, helped this platform spread to the point of powering almost 43% of all websites.

Since 2021, when we adopted WordPress as our long-term content management system, it brought us big satisfactions and let us meet many people, so we don't regret any of it. But because of the new policies of WordPress's creator, we stopped writing new content quite a while ago: how can you publish anything new when you don't know whether you'll still be on the same website tomorrow?

New platform: focusing on text only

Our new content management system is text-only and it's called WriteFreely. We have no comments or “likes”, no search and no contact forms. We just want to write, and we're fine with that, even though we miss some design features, like publishing pages that show only specific content, such as “fantasy” and “real world”, or having a piece of text that appears automatically on every page, which is useful for a license or a disclaimer. Oh well. We'll get over it. Besides, we can hardly believe it: being able to focus only on writing feels like heaven! We'll admit that from late 2025 to mid-2026 we wasted a huge amount of energy deleting spam comments!

How to reach us?

Does no comments mean losing the community? Not really: we're trying to build a new one, and we'll take this chance to share our Mastodon contact for anyone who really wants to talk to us: @plusbrothers@mastodon.uno – both for Italian and English speaking folks. Elettrona and Gifter

Valentino Talluto

We came across an Italian-speaking podcast telling the story of Valentino Talluto, a man convicted of transmitting HIV to many people, a case that shocked Rome and the whole of Italy and brought a dramatic truth to evidence: when dealing with HIV, media talk less than expected. And often in inappropriate ways. Unfortunately the podcast is in Italian only so we won't link it here.

The same old toxic narrative

When the news covers an extreme case like that of Valentino Talluto, journalists' tone is always the same:

• “He was kind, gallant, I trusted him, and yet inside there was a monster”: as if a person living with HIV couldn't be kind and caring towards their partners;
• “HIV-positive man has unprotected sex with dozens of people”. They forget the detail that modern treatments can make it possible to have sex without condoms while, at the same time, not spreading the virus;
• “He killed her by making love to her”… No comment needed.
• The use of words like “plague-spreader”, which stigmatize people living with HIV, when the correct term would be sexual predator.
• The morbid storytelling, hunting for salacious details about the protagonist's sex life.

This fuels stigma against HIV-positive people, who are considered solely responsible for other people's health when, in fact, everyone involved should be accountable for their own sexual behaviour. The immediate consequence of media-guided serophobia is that, once they learn a friend, colleague or partner is HIV-positive, far too many people still push them away, as if just talking to them could transmit the infection, without knowing that nowadays the greatest danger is someone who has never been tested because they consider themselves immune to risk, yet goes around passing the virus left and right: this is called unscreened HIV.

The girls Valentino Talluto harmed are therefore victims twice over: of their abuser, and of a distorted culture, especially present in Italy, built on prejudice about sexuality and sexually transmitted infections, HIV included, which are seen almost as divine punishment for “immoral behaviour” rather than as conditions to be diagnosed and treated in time, like any other. Media-guided serophobia hurts them too.

In 2014 a young woman filed a complaint against Talluto, but he had been spreading the virus since 2006 (or perhaps even earlier). Proper sex education, along with prevention campaigns focused on risk behaviours rather than on “risk categories”, would have given every girl all the tools to protect herself, testing included, and the cases of intentional infection would probably have stopped at one (which would be too much as well, of course), but the man would have been stopped from doing harm right away.

In fact, we think that if pre-exposure prophylaxis were offered as a preventive drug to the whole sexually active population, disturbed people like Valentino Talluto wouldn't be able to do this much damage.

PrEP exists, but there isn't enough information about it in the so-called “mainstream”.

There's no point crying over spilt milk, or pitying those who find themselves facing a chronic infection because of someone else; the State has every new infection on its conscience until it starts dealing with prevention in a truly concrete way.

Right now, instead, prevention is moving slowly, at least in Italy. Politics priority is to hide the situation, because HIV only concerns “certain groups”; people keep repeating “I trust him, so I don't protect myself”, as if trust were a form of prophylaxis, and in doing so they leave the field wide open to a twisted mind like Talluto's.

We want to remind our readers: we are all sero-involved. For better or worse, HIV and the feelings connected to it concern everyone, and knowledge is the only way to defend ourselves against a condition that today is completely preventable.

Unprotected sex while HIV-positive?

It's not us saying it, it's science: if a person with HIV is on effective antiretroviral therapy, they cannot transmit the virus sexually, so in theory they can have sex without a condom, although, of course, nobody recommends condomless intercorses, since there are dozens of other infections, more or less manageable, transmitted that way.

Unfortunately this kind of information does not easily reach mainstream media, because the idea of sex as “sin” and illness as punishment still suits those in power.

Clearly, extreme cases like Valentino Talluto are people who are NOT on treatment and have a very high viral load. Then there was the uproar over the news of a priest who organized chemsex events but, as usual, nobody bothered to find out whether he was on treatment, or whether the other participants were on PrEP. Newspapers only care about the homosexual HIV-positive man infecting the world. Setting aside that this person probably wasn't a saint, despite wearing a cassock. To public opinion it seems that being HIV-positive is the real crime, while any other offences fade into the background.

Sexuality, AIDS and death: an ancestral fear

A distorted view of sexuality has given rise to many urban legends about HIV and AIDS: AIDS Mary, a woman who hooks up a man at a club and, after the one-night stand, writes on the mirror in lipstick “welcome to the world of AIDS”.

Even the Italian band Elio e le Storie Tese poked fun at this tale, as they did with all the others of the “my cousin told me” kind.

There's also a male version, AIDS Harry: unlike the female one, though, the villain is a handsome, kind, romantic young man who sweeps the unfortunate woman off her feet during a holiday and gives her a present, telling her to open it only on the flight home. Inside the package, of course, the usual surprise: “Welcome to the world of AIDS”.

Stories like these exist to feed morbid curiosity, and we won't hide that we thought of an Italian “AIDS Harry” when we first heard about Valentino, but sadly it was all true; fortunately this man received a final sentence of 24 years in 2019. But nothing will give the girls back their HIV-negative status, nor will it erase the prejudice spread by articles and reports built on a morbid narrative. A stigma exploited every first of December, World AIDS Day, or to stoke outrage against the latest maniac; and one for which those very journalists remain responsible.

Conclusion

Some people, given the ironic tone we use when talking about HIV, decided to claim that we promote intentional transmission of the virus or justify those who act like Valentino Talluto. Nothing at all: we completely distance ourselves from irresponsible sexual behaviour and, since both of us have experienced HIV up close, one directly and one not, we have always dealt with the condition properly, showing our faces and talking about it when needed. We only make fun of all the serophobes wallowing in prejudice, exposing their absurd contradictions and throwing them right back in their faces.