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Comment by djaque | Hacker News Reader

I didn't understand the AIDS epidemic until I listened to a podcast [1] where they interviewed a gay survivor. I can't imagine my friends dying off one by one around me from an unknown specter. The government pretending you didn't exist and ignoring you because it was a "gay problem". Society demonizing you.

He said that even after it was understood that AIDS was not transmissible by touch, morgues would refuse to accept the bodies of gay men. When people knew they were at the end of the rope, they would ask their friends to throw their ashes over the fence into the white house lawn. That way as their final act, they could tell the government that their active silence was literally killing people and that even if they considered them others, they wouldn't be ignored.

It's heartbreaking, but I'd recommend anyone to listen to the interview if you don't know much about that period in history.

[1] https://www.stitcher.com/podcast/shame-on-you/e/66787240

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In 2002, I was back in my hometown after some years away. By then they estimated that HIV infection was running at 1/3 of the population. I had a job that took me most days to the local cemetery, and was harrowed by the next round of graves freshly dug, most three foot long. I imagine you can guess why they were so short. And if that sounds angry, it is anger - still - but not directed at you, OP. I went to the hospital on one occasion to see the child of a friend, a little boy called AK, draw his last breath. His name was a reference to the machine gun; a child of a revolution I didn’t understand.

I’m not sure why I write this. I never really spoke of it before. I think I found your comment deeply moving.

Your story is heartbreaking. Thank you for sharing. I would love to learn more about your hometown and hope it has fared better since 2002.

Sorry... Trying to understand. Are you saying that all these little kids died of aids? How did they contract it? Most kids are 3 feet tall by age three or four. Also, why so many deaths in 2002? Very effective drugs had been widely available for a long time.

Kids got it trough birth/breastfeeding.

Combine that with AK, 2002 - I would guess somewhere in the southern half of Africa.

I guess that it was combination of medicine not being cheap and IIRC some political leaders in the region were downplaying HIV by that time.

Also corruption, ideology and ignorance.

https://www.politicsweb.co.za/news-and-analysis/the-virodene...

> Most kids are 3 feet tall by age three or four. Also, why so many deaths in 2002? Very effective drugs had been widely available for a long time.

Effective HIV suppression is not cheap, and usually out of reach of developing countries or poor communities such as… pretty much all of sub-saharan africa, where the AIDS pandemic remains essentially unchecked.

According to wikipedia, as of 2016, 8 countries had more than 10% of the population infected and two of them (Swaziland / Eswatini and Lesotho) were above 25%: https://en.wikipedia.org/wiki/HIV/AIDS_in_Africa#/media/File...

Given mother-to-child transmission is somewhere between 15 and 45% without mitigation measures (which are unlikely to be in place in a country where a quarter of the population is infected), we're talking 5~10% of children born infected.

The Australian government's 1987 "Grim Reaper" ad gives some impression of the mood at the time. Of course, it didn't do any favours to the gay community.

https://www.youtube.com/watch?v=_lhFc_9U_UY

Italy’s 1990 “AIDS: If you know it, you avoid it” public service advertisement is indelibly seared into the consciousness of my whole generation. Drawing purple outlines around things is still an instant reminder of that. The soundtrack is often heard overlaid over threatening scenarios much as the Benny Hill soundtrack is overload over situations to indicate they are ‘funny’.

https://youtu.be/so94WTK8kBw

What a sad way to ruin the song "Oh Superman" by Laurie Anderson.

It's one of my all-time favourite songs, since I was a kid. Italian partner looked at me oddly first time I played it at home, as her memory of it was all bundled up in grim negativity.

It's not a song that gets played much at home, when she's about :(

Yeah, it’s really ingrained in us. It’s shorthand for existential dread.

Damn son. That gave me chills.

My mother worked in a funeral home from about 1986 to 1997. I recall when they got their first AIDS victim in 1987. They took the body and I don’t recall my Mother freaking out about it. They realized that sooner or later they were going to get remains of someone who had died of AIDS. There were few protocols at the time regarding how to prepare bodies for viewing and I think they simply used common sense. I recall my Mother describing double gloves, smocks, and face shields when dealing with the blood. Despite the times, I think the folks who work in the funeral industry at that time (mostly family run) were truly compassionate about caring for someone’s remains regardless of who they were and didn’t judge. While they had concerns about dealing with this first case, it became routine (sadly) very quickly thereafter. I’d imagine they received referrals from their handling of that first case. And very quickly they started handling all remains are handled as if they were HIV positive.

The only other thing I do recall was some concern on this first case about folks showing up to disrupt the Funeral in part because most of the mourners were from the gay community. So I think they hired the an officer from the local PD to provide security but nothing happened.

I'm sure it varied quite a bit depending on where you were.

In the podcast, the interviewee talks about how in some major cities there was only one funeral home which would serve that population. Those places have now become the only place some gay men want to handle their body when they pass as a sign of appreciation for their compassion during the AIDS epidemic.

And The Band Played On, the whole 1993 film (2h20min) is on YouTube. It's based on a 1987 book.

https://www.youtube.com/watch?v=0KthBMpST7Q

The Randy Shilts book it is based upon is a very engaging and detailed record of the AIDS epidemic in the US. He himself sadly died of it, shortly after finishing the book.

The white house lawn comment sounds powerful. But I don't see any evidence it actually happened. Right?

Looking closer I found this [1] which is the guy the interviewee was speaking about. It looks like it was his ashes, not literally his corpse. I think it was referred to as his body in the podcast which is where I got it from, but I'm assuming that was in the sense of "what remains of his body". I'll update my post.

It looks like the white house lawn is home to the remains of at least 18 gay men that died from AIDS.

[1] https://www.vice.com/en_us/article/vdqv34/why-the-ashes-of-a...

I followed the AIDS crisis in the newspaper from Day One, starting with one-inch long columns about "mysterious purple lesions called Kaposi's sarcoma" to shrines with hundreds of photos occupying whole sections.

The similarity with corona in 2020 is that so little was known, but for years, not months. The difference was that AIDS was 100% fatal until drugs were developed, and AIDS killed a generation of young adults rather than older people.

(There were interviews with a handful of men who were immune to the AIDS virus, but had to endure all of their friends and partners dying, and had to deal with inheriting a lot of possessions that reminded them of dead people.)

Almost all hemophiliacs in North America used pooled blood products from thousands of donors, so just about all of them died. (There's a Canadian film on Youtube that covers this.)

>There's a Canadian film on Youtube that covers this.

Yeah it was a major scandal here in Canada. The Red Cross lost the right to handle blood a new organization called Canadian Blood Services was created.

Many people with hemophilia died but I think people at the tail end of it were around when the new drug cocktails slowed the disease.

As a teen in the 80s AIDS was pretty scary even for a straight kid with no girlfriend. It seemed like everyone was talking about it, getting it, scared of people with it, or denying it existed.

Anthony Fauci had a hard time getting Pres. Reagan to even take it seriously (sound familiar!?). Many conservatives saw it as the "gay disease" and dismissed it as irrelevant.

Isaac Asimov was so embarrassed to have contracted AIDS from a blood transfusion that it wasn't mentioned 'til after his death.

I had no idea that he died of AIDS and that was in the 90s. It's terrifying how recent it was that he would have received public backlash for contracting a disease during a surgery.

To be fair, 1990 is 30 years ago.

I remember how much of a hero Magic Johnson was presented as being for simply publicly admitting he got it during surgery and advocating.

It was brave for a multi-millionaire celebrity to admit publicly that he got it by accident. If he'd have been gay too my gosh... what scandal...

Terrifying indeed.

I feel like you're leaving homophobia out of the equation. Asimov was ashamed, and there would have been a backlash, because society associated AIDS with gay men. If people had really believed that he'd got it through surgery, there wouldn't have been a bad reaction.

At the time, some pediatricians used to give moms after birth a pint of blood to "pinken them up" (make their cheeks rosy.)

Of course, that gratuitous pint gave some of them AIDS or liver disease for no useful purpose.

More and more you realize hospitals are the most dangerous place to be, emphasized by corona, but the CDC maintains a list of about 18 infectious diseases rampant in hospitals today.

Yeah- I remember being in high school biology class and we had a poster of AIDS symptoms from HIV infection (KS, along with others). Would have been mid-to-late 1980s. Fast forward to grad school- 1995-2001 and I'm working with protein structures like HIV protease and reverse transcriptase to find drugs that interfere with them. Only around 2001 did drugs start to be approved that were really effective.

I still remember that poster with KS and other symptoms on it, some 35 years later. Folks outside of biology have no idea how slow the time frames of some disease treatments can be.

Look up The Ashes Action organized by ActUP

You know how public restrooms in the USA always have paper toilet seat covers? This dates to that era (the product existed already but was extremely uncommon).

Because of that whenever I see those I think of the bigoted attitude that lead to their deployment and won't use them.

Really? I'd think they'd be more likely for things like herpes, staph and maybe fungal diseases.

They do help for those things, and not for HIV. But which caused them to be deployed?

I respect your commitment to fighting bigotry, but I mean - those toilets can be pretty nasty. May as well use them, now that we have them. :)

Well, I survived for decades before they were widespread, and have survived since, so...

There are more pathogens on your hands than on your butt, as you touch the whole world with your hands and keep your butt most of the time in your pants.

Paper ass gaskets do not diminish transmission of any microbial contamination on a toilet seat. They exist solely for psychological benefit.

An excellent term that made me laugh out loud!

And the band played on. Great film that tells the story

This reminds me of an art history class in college; amidst a lecture covering works in the '80s and '90s, the professor just broke down in tears as a lot of the artists he knew personally, and had passed from AIDS at the time...

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