Part Two: Lesbian Mutual AID During the AIDS Crisis - podcast episode cover

Part Two: Lesbian Mutual AID During the AIDS Crisis

Mar 05, 202554 min
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Episode description

Margaret continues talking with Andrew Ti about the mutual aid and solidarity offered by lesbians in the 1980s.

https://www.globalcitizen.org/en/content/ward-5b-documentary/

https://www.nytimes.com/1985/12/14/us/ward-5b-a-model-of-care-for-aids.html

https://www.npr.org/sections/health-shots/2019/06/26/736060834/1st-aids-ward-5b-fought-to-give-patients-compassionate-care-dignified-deaths

https://www.reddit.com/r/Actuallylesbian/comments/16uyn8i/are_there_more_nuanced_accounts_of_lesbians/

https://www.nbcnews.com/health/health-news/gay-bisexual-men-can-donate-blood-new-fda-rules-rcna83937

https://gcn.ie/lesbian-blood-sisters-crucial-1980s-aids/

https://womensmuseum.wordpress.com/2019/04/10/the-blood-sisters-of-san-diego/#:~:text=Wendy%20Sue%20Biegeleisen%2C%20Nicolette%20Ibarra,in%20at%20least%20130%20donations.

https://www.thebody.com/article/candy-marcum-therapist-since-aids-early-days

https://abcnews.go.com/GMA/Wellness/nurse-cared-aids-patients-1980s-epidemic-explains-fight/story?id=63970606

https://onlineexhibits.library.yale.edu/s/we-are-everywhere/page/why-are-women-invisible-in-the-aids-pandemic

https://onlineexhibits.library.yale.edu/s/we-are-everywhere/page/lesbian-aids-activism

https://www.nytimes.com/1991/06/07/us/aids-definition-excludes-women-congress-is-told.html

https://www.acon.org.au/wp-content/uploads/2015/04/Ann-Maree-Sweeney-today.pdf

https://inews.co.uk/opinion/comment/the-lesbian-blood-sisters-who-helped-save-gay-mens-lives-235100?srsltid=AfmBOorQfWpzL-6iOSpigFOpkO8TeyPRA03Z7I1qPQELuO1cW9hVbTPy

http://www.thedallasway.org/stories/written/2017/11/24/howie-daire

https://www.texasobituaryproject.org/081983daire.html

https://time.com/archive/6703557/guerrilla-drug-trials-the-underground-test-of-compound-q/

https://www.quietheroes.net/about

https://www.cscsisters.org/holy-cross-quiet-heroes/

https://www.thebritishacademy.ac.uk/blog/aids-epidemic-lasting-impact-gay-men/

https://www.workingnurse.com/articles/the-nurses-of-ward-5b/

https://www.npr.org/2019/12/01/783932572/how-the-catholic-church-aided-both-the-sick-and-the-sickness-as-hiv-spread

See omnystudio.com/listener for privacy information.

Transcript

Speaker 1

Cool Zone Media, Hello and welcome to Cool People Do Cool Stuff. You're weekly twice weekly reminder that when there's bad things, there's good things. I'm your host, Margot Kiljoy and my guest who I was I should have I'm now hamming it up because they took a moment to take a drink is Andrew t.

Speaker 2

Thank you, Hi, thanks for having me again, my plan continuing.

Speaker 1

I don't know, I got to kind of brag to my friends the first time you came on my show. But people heard me say this the first time you came on. But we used to read you know, is this racist? Was it Tumblr or something?

Speaker 2

Yeah, yeah, that's so.

Speaker 1

That is coming on twenty years ago, as.

Speaker 2

I know what's not that?

Speaker 1

Yeah totally, But yeah, we used to We used to sit around and you know, yell, oh shit at all the cool stories that you would share on that.

Speaker 2

So yeah, I mean, you know what, it was a fun time. I actually someone had just reached out on Blue Sky and was like, I don't know if you remember you wrote this one line that I quote all the time, and I did not remember the line, but it was very nice.

Speaker 1

Do you remember the line now?

Speaker 2

Well? Yeah, yeah, the line truly is. It's not remarkable. It's just like, first of all, go fuck yourself, and second of all, YadA YadA. But I guess the phrasing. The phrasing landed, but I was like, I don't know, I just talked like that all the time.

Speaker 1

Yeah, no, I like it. It's a little bit of confusing because you know, when you when you produce content as your job, you don't remember everything that you say.

Speaker 2

Oh my god.

Speaker 1

But so that it's like interesting when people are like, oh, you said this thing, and I'm like, I believe you. That sounds like something I would say, you know.

Speaker 2

It typically at least sounds like me. So I'm like, I don't think anyone's being disingenuous, but I'm like, I don't know, or for Yosa's racist. Sometimes people would be like, oh, when you you answered this question on the pod, and I.

Speaker 1

Was like, yeah, I believe you.

Speaker 2

Yeah I hope.

Speaker 1

So yeah. Well, we are in part two of an episode about lesbian stepping the fuck up during the AIDS crisis, and when we last left part one, people were the blood Sisters were leaving Warhammer forty K to take care of people, and I don't know, I kind of like these episodes that are like collections of individual stories, you know, yeah, sort of vignette episodes, because it's really interesting to me doing research on the AIDS epidemic is like one of

the more researched historical events right in a lot of ways. But it's interesting because a lot of it is I don't know if you, I don't know the right word here. It's not like full history, but a lot of it is like oral history projects. There's a lot of like sure, I was reading a lot more archives and a lot more you know, reports about individual people as compared to I didn't pick up a book called like Lesbian Step the fuck Up during the AIDS crisis, the book right now.

Speaker 2

And well also I do I do think to your point also about the like the individual stories nature of this is I prefer that sort of look at history also because I increasingly, especially like really do not subscribe to the sort of like great person of history model. And it is just like it doesn't really matter whether it was like a collective action or a series of collective actions or independent actions not even collective. Maybe that

made X or y thing happen. Yeah, yeah, I just like as opposed to like, uh, you know, the Great Man. I guess it's always great.

Speaker 1

Almost always is.

Speaker 2

Yeah.

Speaker 1

I was like I was very well, wok are you to say the great personal history?

Speaker 2

But it's like that's not how history works, right, that's not the problem.

Speaker 1

And like one of the problems with the Great Man theory of history is it gets people off the hook too easily because like, yeah, we are living in history, we are making history, and so we tend to think like either we are the most amazing important person, like we're either Fred Hampton or nobody. Yeah, you know, and that's just not true, right, Like, and Fred Hampton was an amazing person. He was so amazing that the government

had to kill him. But like it's all of the things that come together, and it's all of the people. It's all of the individual people doing all of this stuff, you know.

Speaker 2

And on the on the evil men of history side, like as we were talked about last episode, like yes, Ronald regularly indisputably like evil, but truly like his power, you know, and as we see with like the Donald Trump, it's like the power doesn't come from Donald Trump makes it more stark because it's like obvious that he doesn't have. He has like a type of charisma, but he does not have savvy or intelligence or whatever. But what he does have is this apparatus of like fascists that are

moving this thing forward. And those are all the nameless people of history or you know, relatively nameless compared to Donald Trump, but they're the ones doing it. And you know, this era of Reagan or soon to be, you know, going into this era of Reagan is like you know, when he was in severe mental decline and the agenda didn't pause for a second. So he's not drive. He didn't create or drive or like give the you know, he was sort of just like a figurehead, especially near the.

Speaker 1

End, especially even in the like figurehead is like literally the thing on the front of the ship, you know, like the icon of this thing, like oh, we're all doing it for Mermaid lady or yeah you know, yeah, yeah, no, that is a good point. Well, the next vignette I'm going to do is going to be the first person I featured on the podcast whose Instagram page I found, which.

Speaker 2

Makes me nervous.

Speaker 1

Specific when I first started this show, I actually wasn't going to do anything from about nineteen fifty onwards because I was like, oh, I'm going to stick to history, and I'm going to stick to like a little bit more settled history. And also like specifically, I was like, I don't want to talk about someone who's alive and

get it wrong. And it was kind of a cop out because then eventually I realized I was like, well, a lot of important stuff and interesting stuff happened, Like I'm still probably not going to do like current events on this show, you know, but like but also, I mean, one of my whole favorite things about the show is like pointing fairly clearly to historical patterns and be like see, yeah.

Speaker 2

Yeah, yeah, yeah, it doesn't matter whether it's a current event. It's like, you know, we're pretty evidently at least in our natural lifetime's not going to be pushing equality for word.

Speaker 1

The whole apparatus could collapse and then we can Yeah.

Speaker 2

I suppose, sure, but we're.

Speaker 1

On the defensive right now. I will yit.

Speaker 2

We're on the defensive, right yeah, yeah, yeah, we will be lucky to claw back gains that existed in our lives. I would I would say.

Speaker 1

You're probably right. But the person whose Instagram page I found is Bishop Evette Flunder who is a who is whose bishop? Underscore flunder for anyone who's.

Speaker 2

And a delightful vabe, delightful, vab delightful handle.

Speaker 1

I know, and this woman ruled. She probably still rules. She's a queer Black gospel singer who did an astounding amount for people with AIDS, in particular in making sure that black communities and communities of faith weren't left out of the conversation. She was watching so many people die in the bay and was like, all right, we're gonna

do something. And one of the things her and her broader community did was start an underground clinic, working with something called Compound Q. This is literally an underground clinic. It was in the basement of her church. Unless there are multiple such clinics in San Francisco at the time, I believe this was called Project Inform. I there's a bunch of articles about them, and they're all not quite lining up. Is where I'm at about this particular moment

of history. But I think something too important because I'm now going to talk about illegal studies of untested drugs, right, and I'm going to talk about it as a positive thing. And I think the thing that is important to understand about the AIDS crisis is that people were being failed and masked by the government and the CDC. So AIDS activists themselves had to become the experts on their own illness.

And we covered this a bunch of the act Up episodes that one of the things that act Up the kind of primary direct action group working on the AIDS crisis in the United States. One of the primary things they did was get people with AIDS into conversation with the CDC and like make sure their voices were actually heard and become actual experts on the science, not just like I'm an expert on my own experience, but like literally an expert on the surrounding stuff too, you know, Yeah.

Speaker 2

I wonder. I mean again, it's like like drag parallels today it is so like totally you don't want to like fall into this like do your own research people trap.

Speaker 1

Right, But it's so messy, right, Yeah, because when you say, oh, do your own research, you mean like go find things that conform to your own echo chamber and like, yeah, go like convince yourself that vaccines are bad or whatever.

Speaker 2

Yeah, exactly, but you do, Yeah, actual research might need to be done, right, I guess it's the word research has been completely bastardized.

Speaker 1

No, no, totally, no, it's it's so sketchy. This is the thing about being critical about like government infrastructure of health is that you're like, well about half of the people at least who are critical the government infrastructure on health are doing it in really bad ways.

Speaker 2

Yeah you know, yeah, yeah yeah.

Speaker 1

But like a lot of my friends do DIYHRT, like hormone replacement therapy, and there is like a fairly broad established community working on trying to do this as safely as possible. It's not what I would specifically recommend any listener who's like, oh, it might be trands, I'm like, you know what I actually think because by and large, like most trans clinics that come out of literally old

AIDS clinics. You know, there's a trans affirming clinic that I would go to for a long time, and they like specifically calm out of an AIDS clinic, you know. And that's actually an important thing to remember about it too, Right, Okay, it's a kind of a tangent, but we were talking earlier about mutual aid, and you're talking about how like the limitation of mutually ad how you don't have any bulldozers because you haven't stolen any yet. And and so

then I told you how to steal them. I mean that didn't happen.

Speaker 2

How one could. Yeah, that's the thing is, that's the important thing, is like, yeah, no one knows.

Speaker 1

Yeah, I mean I wouldn't know how to dry one. But like people see formal and informal disaster relief as entirely separate spheres, and they're not right. Yeah, Like formal disaster relief relies on informal disaster relief at the very least for the last mile problem. Right, If you show up and you're like, oh, we put all this stuff in a warehouse, how does it get to where it

needs to go? The answer is like, well, if it's in if it's in western North Carolina, it means like people will pick up trucks or mules, you know, And it's just different in different areas. But like I think that sometimes health, like the aid's response, is another situation where there's formal and informal, and the informal is pushing the formal, yes to be good.

Speaker 2

I will say, actually a thing that I didn't say last episode about just like the things that were happening around the wildfires. Is as much as I was putting in sort of friendly, friendly digs and jokes about the mutual aid community, I will actually say the thing that was also very evident and eye opening for me, and maybe less eye opening for some but definitely opening for

me was the formal like humanitarian response not better. Yeah, like fucking Red Cross is also just made up of a bunch of people with incomplete information, and they also have the added layer of sort of not necessarily the purest.

Speaker 1

Motives and slowness with red tape.

Speaker 2

Yeah, so they it is. Yeah, so I should say, like for all my joking about you know, yeah, fucking communists are always late, like whatever, you know, And I'm not saying these organizations are necessarily bad, but even like you know, your Planned Parenthoods, your Red Crosses or whatever the fox, you know, you're good parts of the federal government. They're not necessarily better are at this shit than you and your friends? Right?

Speaker 1

And they're also, like you said, they're made up of people you know, and so often those people are like, oh whoops, all this was supposed to go to the Red Cross, where it was sit around a warehouse but I seem to have left it here in front of you punks.

Speaker 2

Gotta go yeah, yeah, yeah, well, and that's the version that works, or it's just like, oh, the Red Cross also didn't know where all these supplies should go.

Speaker 1

Yeah totally.

Speaker 2

So like you know, they don't they're not magic. They don't have like a system, even though we want them to know. They don't necessarily have a system. What they do have a little bit is a little more experience and vastly more resources.

Speaker 1

Yeah, totally.

Speaker 2

Well.

Speaker 1

The compound Q was an experimental drug in the late eighties. I was being tested in tiny doses, and it was like being formally tested in a clinical setting in the hospital nearby hospital. But people were like, look, we are going to die. We are we have a disease with a one hundred percent mortality rate. People were willing to try anything.

Speaker 2

Yeah, who cares.

Speaker 1

Aids patients and doctors worked illegally together to run tests. They knew that folks were going to try injecting this stuff at home, so why not trying to do it in a more controlled environment where the lessons could be applied to others. I want to know more about this part. I will say like there's like I started reading about like how many people died as a result of this these tests and you know, all of these comparing mortality stuff. That is maybe a story for another day.

Speaker 2

Yeah, I'm sure some of that information is not available or some of it would have to have been, you know. And again, you know, maybe this was not the right compromise. And I am purely speculating, but like, sometimes it might not be available for legal reasons, for legal peril, et cetera.

Speaker 1

Like, Well, what's interesting is that people who are involved in this do talk about it really openly, and they actually like, I mean partly because they're like, well, what the hell do we have to lose?

Speaker 2

Right, yeah, what are you going to do?

Speaker 1

Yeah? And like and the people who weren't dying of h e ades were like, but I have a moral imperative to try and save people. And so it was like literally, you know, it was like five hundred patients and six doctors working at this clinic, you know, and they like supposedly and there's people arguing one way or the other about this, they actually gave the CDC a

heads up that they were going to do this. Oh no, not the CDC, the the people, h no, what did FDA maybe, Oh sure, yeah, they like gave them a heads up that they were going to do this, and then the FDA was like, oh, I don't know that's out over there, you know, yea, And so it was kind of a like I think there was like a wink and a nod coming from institutions because they were probably like, yeah, no, that makes sense. All those people

are going to die, yeah, you know. And then also it's hard because like some of the articles I read were from nineteen eighty nine, when a lot of this stuff happened, and so like I didn't find the articles on the follow up. This is the thing that I've run across a lot. A lot of stuff is newsworthy when it first happens, but then the long term results aren't as like immediately available to lazy researchers, I mean, hard working researchers.

Speaker 2

Right, and well, but you know, like all things like they are just less likely to be published. Like it's just like you got the headline and you move on.

Speaker 1

Yeah and yeah. So out of this church, doctors and patients were working together and you know, and there were some positive it was a very toxic drug, right, But it like people were seeing results and stuff like that, and so people were trying it, and Bishop Flunder worked tirelessly for AIDS patients. She wrote once quote in those years, there weren't a lot of men who were engaged with this work, not a lot of men who were involved in handling people with HIV and interacting with people up close.

There were a lot of women, though, And I can remember when most of the folks who would really actually touch people and engage with people were women. And I was one of those women, and I was surrounded by other women. And so her and the people she's working with, they also built faith based AIDS organizations. They worked with act UP and called themselves blacked up because there weren't enough black voices in the act UP movement from there. Yeah,

well there weren't. So they were working to correct that.

And then, in one of the most like amount of effort to amount of dollars won by a direct action I've ever seen in my life, her and a bunch of other black AIDS activists and faith AIDS activists were having a meeting with the CDC and they were trying to get them to design a minority AIDS initiative to like work inside communities that weren't white or whatever, and they weren't being taken seriously, so they just like did a walk out, and it was like it looked really

bad because it was all the like pastors and shit had just walked out. So they got half a billion dollars of funding.

Speaker 2

Like, yeah, I mean, we'll see, we'll see if anything like that ever continues.

Speaker 1

But I know good, I know good. She did an awful lot of work, I believe, with others to develop a theological framework within Christianity to support queer people and people with aids. And a lot of her work was like specifically two faith communities to be like hey, stop abandoning people, you know, And people fucking hated her for that. That was the thing, not the illegal drug tests, not the like you know, sure people hated her in the

conservative parts of religious communities. Yeah, someone shot out the back window of her car. Someone else shot through the

window of her bedroom. These were different events. She never figured out who did it, but she's pretty sure it was like I think it was even like someone from like a church that she went to or something, but it was like people from within faith communities who were like, no, fuck you, right, And to this day she has ashes on the altar of her office of the people whose families wouldn't take them, And that's like an image from

everything that I'm like reading today. The stuff that happens with people's ashes when they're abandoned is like one of the things that sticks with me. She went on to serve on Obama's HIV AIDS Council, and she's now senior pastor of the City of Refuge United Church of Christ, a radically inclusive congregation in the Bank. And I think actually was her. I can't remember. I read a lot of these vignettes all at once and then didn't put

it in the script. Several of them made it really clear to include trans women among the people who were suffering and dying and like really speak and like trans inclusive language that I really appreciate it. So that was you, and you're listening, I appreciate it. And if you're not listening, well, then you won't hear this. And if it wasn't you, well I believe you would have done it too, because you seem nice. Yeah, but you know what I would be annoyed at if I was listening to a podcast

about myself from actions I did forty years later. I would be annoyed at missing out on the sweet sweet deals offered by our advertisers. But you don't have to because you can hear them. Well, not you, but the listener.

Speaker 2

This way's around it.

Speaker 1

Yeah, anyway, here's ads. Then we're back. Okay, another one of these stories. In Salt Lake City. You have another sort of example of how everything can go down and how complicated this world that we live in can be. There was an infectious disease expert in Salt Lake City, a lesbian named doctor Kristen Rice. She had just moved

to Salt Lake City in nineteen eighty one. She like literally moved there the same day that I think the CDC was like, hey, Grid is happening, you know, right, And her and a bunch of game started the AIDS Project Utah. As best as I can tell, this happened like a lot of these other things where a lesbian and some gay men start a gay thing and then the lesbian's the only one left to run it, right. And there's another woman, a PA, a physician's assistant who's

working with doctor Kristen Rice. Maggie Snyder. The two actually fall in love doing this work, and they're still together today, and it's like really sweet. They're like, meet cute is like a fucking battlefield.

Speaker 2

Yeah, you know, yeah, I guess happens. Yeah, it's nice.

Speaker 1

Yeah, I guess real battlefields are also a lot of gay couples meet cutes.

Speaker 2

Yeah.

Speaker 1

One of my favorite sayings from like gay liberation stuff is an army of lovers cannot lose. Yeah, and it's a reference to like some shit in Rome where like the units of gay men or whatever. You know, it's fucking good. Yeah. Anyway, Aggie, when talking about when she'd just been working as a PA, told an interviewer for The Body quote, nurses wouldn't go into patients rooms. And I'm a person that always thinks everybody should get care, so I wasn't fearful. I didn't understand why the nurses

didn't go in. As nurses, we took an oath to take care of people, and to me, that meant you take care of everybody. But Mormon, Utah was a really rough place to be a gay person period, let alone someone with AIDS. Right, Doctor Rice ended up the only doctor in Utah or at least sat Lake City, but I believe Utah who treated every aid's patient in the city.

Speaker 2

Jesus.

Speaker 1

Yeah, they ended up partnering with when their clinic was like a private clinic, because basically what would happen is that as soon as you have like AIDS, your family would kick you out, and then your job to fire you, and then also your health insurance would be like now we're good, we don't care, right, fuck you, you're the devil.

Oh yeah, I actually don't know the means by which everyone was kicked off of their health care, but it's certainly when I'm reading about this particular story, it seems like everyone's getting kicked off their health care, and so they end up going to the one clinic that will take them, and so they end up partnering with a

Catholic hospital. The Sisters of the Holy Cross is a congregation of nuns who worked at I believe Holy Cross Hospital, and the nuns then started throwing down two working to help everybody there, like running errands and providing care and early AIDS healthcare was more or less hospice care right right, and the other I was like, oh, there's another story about ashes in here that really affects me when I think about it, is that a ton of gay Mormon

men who are abandoned by their families wound up with their ashes and turned in the Catholic cemetery because the Catholic Cemetery had a place that was like, no matter who you are, you can have your ashes buried here. You know, we'll take everyone, which brings me not to an add transition. So the really bizarre role of the Catholic Church during the AIDS crisis, I kind of assumed it was like just universally bad, right, Yeah, it's not.

There's no middle ground. This is like I was talking to my friend about this, like Oscar Wilde, I think as a quote where he's like the Catholic churches for saints and sinners. Yeah, like there's no middle fucking ground.

Speaker 2

Yeah, yeah, that is. I have very little, Like I grew up with the religion and I didn't really have a sense of this, but I have sense. Weirdly, I feel like more than I would have thought in La run into like you know, left wing Catholics, I guess. And it is the thing where I'm like, okay, but surely you see what this. I can't believe. I just can't believe these people are willing to be part of the larger institution of the Catholic Church.

Speaker 1

That is the real messy part.

Speaker 2

Yeah, but they are and they are not conflicted, So yeah, you know, what do I know? But yeah, it is it is sort of eternal. Only surprising to me these folks exist even though they do.

Speaker 1

I was reading didn't end up in the script, but I was reading this piece about a Catholic, a gay Catholic during the AIDS crisis, and how he'd been super Catholic but he was also just super gay and he was just fine with it. But then during the AIDS crisis, he was like fuck this and he left the church. But then he actually came back to the church, and his argument for why he came back was, I'm as Catholic as the Pope is. I'm not going to let

them kick me out of my home. And so I think it's like, because I'm kind of a like, I think there's a lot of Catholic teachings I really appreciate people have probably caught onto that from this show. But I have a lot of critique of the Catholic Church as an institution. People have probably also caught onto that I'm sort of a like love the Catholic, hate the Church.

Speaker 2

You know, it's just like the like I don't. I mean, I think to me and again as an outsider who's never had any religion, and yeah, I mean my biggest shortcoming in religion talks is I do not see the value of it, yeah, the same way that I think people who really get a lot out of it do. So. To me, the cost benefit analysis is like so skewed towards What the fuck is wrong with you for doing this?

Speaker 1

Yeah?

Speaker 2

Yeah, because I'm just like, I just see huge damage to society, humanity, the world because of this. So I don't have a sense of, like, you know, the value of it really yeah, which is my own deficit. But I mean I'm just like, I don't know. You can believe in a lot of teachings, but also like ten percent of your money or however much you know that works goes to some pretty awful things.

Speaker 1

Yeah, I mean it's kind of like taxes, right, Yeah, taxes go to my roads, which I appreciate, and it goes to like genocide, which I don't appreciate.

Speaker 2

Yeah, And it's like you can't disentangle them. Yeah.

Speaker 1

Yeah, and the Catholic Church supports a lot of like social justice initiatives. Yeah, it supports a lot of like preventing people from getting birth control initiatives. Yeah, you know, like it's like it's ad Yeah, and I'm not saying that, like even I'm not even saying that, like averages out

fifty to fifty. When I was thinking about this particular thing about why the Catholics have such a strange role in the AIDS crisis, I think of Catholicism as trying to create paladins, like trying to like from a D and D point of view, not a crusade point of view, although very related in this context. Yeah, but people who will do what they believe is right regardless of the consequences.

And the problem is is that they both believe it is right to take care of the sick regardless, Yeah, and try to stop people from having condoms.

Speaker 2

Yeah. Yeah, like yeah, it's like it's really just like what they think a soul is.

Speaker 1

Yeah.

Speaker 2

Yeah, if it was just helping humanity, that would be fine. It's just that their soul, they're you know, saving souls also intel or making life better for souls. Involves a lot of other shit that is yeah, fake at best, fair enough.

Speaker 1

I think NPR did a really good job with the headline from twenty nineteen how the Catholic Church aided both the sick and the sickness as HIV spread. Yeah, because we mostly hear about and for good reason, we mostly hear about, like specifically how they helped the spread of AIDS by trying to like the Pope literally doubled down on no condoms during this period. Yeah, and Act Up was protesting against the Catholic Church and like or specifically against one bishop in New York City who was doing

a lot of that stuff. But at the same time a ton of in the same way that you can say, like lesbians stepped up the largest institution I think for a while that was like supporting gay people financially and like hospice care and like all of this stuff was literally the Catholic Church is what's so fucking wild about it?

Speaker 2

Yeah.

Speaker 1

Yeah, And so it's during the AIDS that the Church doubles down on a nocondom's policy, possibly the worst time in human history to do so. These policies almost certainly killed millions of people.

Speaker 2

Yeah, And to.

Speaker 1

Be clear, Well, the Mormon Church came out of the gate horrible because the Mormon Church also wasn't not so positive on homosexuality.

Speaker 2

Yep.

Speaker 1

Originally it came out the gate saying like famili should disown their HIV positive children. Then a bunch of mothers forced the church to change its position. It's only in the past few years at the LDS Hospital in Salt Lake City has opened an AIDS clinic.

Speaker 2

Oh god, yeah, I mean that. I guess you know again, I do not see the value of religion personally. Yeah.

Speaker 1

No, it all seems very silly with that. Yeah.

Speaker 2

So, but it's just like all of this stuff, all the good things could have been done without the bad stuff. I feel in a non religious context. Yes, is I guess my largest take on this sort of like thing where I'm like, you see how religion and makes us have to do all this horrible shit just to get a slipper of something good.

Speaker 1

Yeah, And I mean I think that the people who are proving that are the mutual AID groups, are the lesbian stepping up. Many of them are religious, but many of them are not. Right. Yeah, So I think there are the people who are proving that you can do that. Yeah, And it's like, but then again, you look at like the religious community and the non religious community are just both full of people doing really good and really bad shit with the AIDS crisis.

Speaker 2

You know, yes, I will say one of my absolute worst thing habits is because a fairly common question when when we're on skid Row for solidating snacks is like, oh, what church are you with? And I am, I am way too snippy that about no church, never church. And I also I am like I should be more unaware that I'm not religious, but many people are very religious, including you know, many residents of skid Row, and I'm just like, why am I starting anything? And it's not like I'm starting.

Speaker 1

Ship but telling them you're not with a church and that you like are an atheist or I'm not to put labels on you.

Speaker 2

But no, no, yeah I am.

Speaker 1

Yeah, so like, but telling them you know that isn't like you're not telling them like and therefore you're fucking wrong. You know, you're just like, yeah, I mean, okay, maybe you are, but like.

Speaker 2

I'm not, I'm not like that, but my tone is definitely that. But also sometimes people just don't like that, you know, I I am. I will say stuff like, oh, I don't believe in I'm not religious, I don't believe in a god, And you'd be surprised at how that is, you know, more combative than I would have thought.

Speaker 1

Well, it's like when I tell people I'm vegan and they're like, but I eat meat. I'm like, I didn't say anything about that. Yeah, that's a whole separate conversation that you brought up. Like, yeah, you know, yeah.

Speaker 2

But it's fairly common. I would just say, yeah, anyways, I believe.

Speaker 1

Yeah, it's very common when you say things like this because people take it as a challenge, whether or not it's intended as it.

Speaker 2

Yeah.

Speaker 1

But doctor Reese worked with the hospital and the nuns to care for people, and nuns were running around trying to convince doctors and funeral directors alike to stop being afraid of people with AIDS. All the while, everyone kept telling them, all you're going to catch AIDS and die. What are you doing? You you know you're dooming yourself by going anywhere near these people. And they're like, no, we're going to do it. This is what we're gonna do, you know.

Speaker 2

Yeah.

Speaker 1

They also provided medications under the table basically using PREP years before it was approved. When AIDS patients died, I read an interviewer. I was like, wait, where'd you get all the medications? And they're like, oh, well, AIDS patients die all the time, So we take their surplus and then give it to the people who you know can't get it, prescribe to them or whatever, because you can.

I'm not trying to tell people how to do AIDS drugs in never mind, go to doctors, talk to them, which is great AIDS clinics if you ever want to take PREP. But but yeah, so they like were doing this well before PREP became on the scene. And they would also work with people who are ordering drugs in from overseas and people would just like smuggle them drugs from all over Yeah.

Speaker 2

I think that is also tough about this, like you know, you see it with with this fucking right wing garbage of the ivermectin, which is that like like, thankfully this was all correct, but in the moment and you know what and this this you know, use of the medication was much much much more based in reality. Yeah, but there is still like a you will simply be judged by hindsight and you cannot totally know where you're at while you're doing it.

Speaker 1

Oh, totally, they could have been totally wrong. Yeah, like, yeah, I think they did a good cost benefit analysis. I think overall all the people doing not all of the doctors and social workers and AIDS activists that I read about who were working with like drugs that were not allowed yet. I think that they did a good cost benefit analysis. But like they could have done a bad one, you know, and they could have or.

Speaker 2

You could have done it right, but you could have done the analysis right, and you can still just be on the marginal side of I'm wrong and history. History just looks at you differently.

Speaker 1

Totally, No, you're right, because all of this looks really like hah. They were just ahead of their time, right, And if I we mectin had cured COVID or.

Speaker 2

Whatever, then yeah, you know, they'd be the same thing.

Speaker 1

But yeah, but yeah they were. That's just sort of like wonky science where they're like, yes, oh, I think this one thing that's good for another different thing will totally be good for this other thing because I want it to be related, whereas like this is like an epidemiologist or whatever, you know, like, yeah, yeah.

Speaker 2

With at least a like a hypothetical mechanism and like a totally you know, a path totally Yes, they're not the same, but but I just it's.

Speaker 1

Like, no, but they rhyme in a way that's almost uncomfortable, like.

Speaker 2

How can you really be sure? Sure?

Speaker 1

But yeah, you know what you can be sure of. These deals are technically deals. Actually that's not true. It might not even be products. They might not even be services. A lot of the ads are just like go outside or gamble.

Speaker 2

I do like, I do like that you've pitched twice now that there are deals in the ads, and I'm trying to think. I feel like it's actually pretty infrequent that there are actual deals in ads.

Speaker 1

I know, it's such a shame. Well, I will say.

Speaker 2

You never know. Yeah, you can only find out if there's a deal if you listen to.

Speaker 1

The ad exactly exactly and here they are and we're back. So I don't know a ton about the rest of the world this relates to it, But I have one anecdote from Ulstrol that I found interesting when I was doing this research. So lesbian nurse named Anne Maurice Sweeney, who wrote about her time as a nurse for AIDS patients in the early nineties. Quote, I can't talk easily about nursing people who are dying of AIDS. During the early nineties, it was like being on the front line

during a war, except nobody won. Dykes were everywhere during the AIDS crisis in this city. We were the least likely to contract the virus, but the most likely to take it on to help to confront a community crisis head on. And just like just like reading her right with pride about like, yeah, all right, we could have stayed safe. You know, like literally, statistically the there absolutely were lesbians who died of AIDS during the AIDS crisis.

And I'm not trying to diminish that. We're gonna talk a little bit about women and AIDS at the end of this, but you know, yeah, the safest way to have sex and from an aid's point of view, and just doing it anyway, just going and helping people anyway, Like I like it. Yeah, Slowly, people fought the stigma

that was isolating AIDS patients. I feel like the waves of the early battle against AIDS were like, get people to admit that it's happening, Get people to stop isolating dying people, get information about transmission out to people, so that's safer. Sex practices can spread, get enough basic treatments out, and let people experiment rather than just die waiting for

proper medical trials. These are a lot of the avenues by that people were fighting, right, And it's kind of interesting too because you can kind of present these like victories like death with dignity rather than like because normally, when we think about like victory in terms of an pandemic or an ailment or whatever, we think of like cures, right, Yeah, but being able to set this bar of like victory sometimes means like I can die with my family in

the room, or I wasn't completely isolated in a weird plastic place before I died, you know.

Speaker 2

Yeah.

Speaker 1

In terms of fighting the medical stigma, a lot of that work was done by the first dedicated AIDS ward in the US, Ward five B, which opened in July nineteen eighty three in the San Francisco General Hospital. It was on the fifth floor, that's why it's called Ward five B. It was actually like words five A and five B or whatever. But like history wanted to simplify.

Speaker 2

It, you gotta pick a name.

Speaker 1

Yeah, yeah, and there's like a documentary from a couple of years ago about it, and you know, it's called five B. Patients had been dealing with extreme isolation, with staff refusing to treat them and all that shit we've been talking about. So the idea of putting the AIDS patients together was appealing, but at first folks weren't so

sure it would be for the best. There was an awful lot of comparison early on between AIDS patients and lepers, who for millennia were put into leper colonies and they still are in many places. But in the end folks were like, fuck it, we need to give people a place to be, so they created five B. San Francisco at the time had the highest rate of AIDS per capita.

New York had more total cases, and those folks needed to be cared for, and in particular, they needed to be cared for by people who would actually, you know, care for them right and not just treat them like shit. Early on ward, five B was many ways of hospice. Not everyone who checked into the hospital with AIDS died right away. You kind of have this kind of oversimplified thing where you're like, I now have AIDS, and now I am go to hospital and now I die, right,

which happened to a lot of people. But it was more like, I now have a complication of this and have to go to the hospital for a while, and I might die there. And I eventually will die there, but maybe not this time.

Speaker 2

Right.

Speaker 1

Many people did recover temporarily from this or that ailment, and there was a companion out patient service of like eight different housing organizations and grew like places to go help people find places to live outside of it. But

people came to the hospital and died there. Ninety seven percent of the patients in the ward in nineteen eighty six were gay men, which is also the like, again, we're going to talk a little bit about AIDS affecting women, and AIDS absolutely affects a lot of straight people, and you know, it's like, yeah, but the very beginning of this as a crisis, and during the period in which it was killing everyone in the United States, the brunt

of that was born by Meadow Sex with men. When they made this ward, every person who worked there had volunteered to be there, and they had a much higher retention rate of workers than elsewhere in the hospital because they believed in what they were doing. Even though it was like this is going to shock you. Other workers in the hospital were like dicks about it, and they

would complain about this. One nurse complained about the quote homosexual hierarchy that provided quote preferential treatment for AIDS patients.

Speaker 2

God, right, just because like their caregivers were good people. Yeah, totally, yeah, yeah, yeah.

Speaker 1

The fucking people just don't talk enough about dying of AIDS privilege.

Speaker 2

Yeah, Jesus Christ.

Speaker 1

Within five b patients were treated as humans. One of the main things they offered was human touch, which people were being denied. Like a lot of people were just like literally like, oh, kind of the main thing I did because I couldn't actually help anyone as I go around and give people hugs, you know.

Speaker 2

Yeah. Yeah.

Speaker 1

Care was directed by the patients themselves and their loved ones. And one of the things that they did was really cool. They fought successfully to overturn the hospital rules that limited what counted as family, right, Like, you're a gay couple, you can't be like you there's no legal marriage, you know, right, like the future sorry, I mean keep.

Speaker 2

That, I mean, yeah, not to totally derail. It just feels like the bigger impediment to equal marriage being rolled back is going to be something along the lines of like how big a headache and its state tax planning. It's going to cause sure, it's companies are going to push back. It's not going to be for justice if it survives.

Speaker 1

Yeah, I mean, it's like there's a certain amount of like genies and bottles and where their relative positions are to each other where it's like hard to get them back in. Yeah, but like, you know, I think we would have thought that. No, actually I'll say it was like we would have thought that about abortion. But actually, now that I think that through, I'm like, no, that has been a territory of struggle, yes, from the day of Roe v. Wade, you know.

Speaker 2

Yeah, but still it is like, yeah, I mean, you know, there's there's no there's no regression that these folks are not on board for is H and are increasingly willing to pull the levers on against the face of all evidence.

Speaker 1

And you know, so yeah, and even like the majority of American people being like.

Speaker 2

Yeah, so yeah, so yeah, I'm not holding my breath.

Speaker 1

Yeah, everything that I read whenever I read like homophobia from the eighties and earlier or whatever. It's this the literally the same stuff as transphobia from now you know.

Speaker 2

Yeah, And I'm like, yeah.

Speaker 1

They will never defeat us. If they managed to defeat the trans people, then they would just then do the same for gay people immediately afterwards, Like they're absolutely coming for you next. This gay is listening to this, but I think you know that, or you wouldn't be listening to this.

Speaker 2

Yeah.

Speaker 1

But the hospital worked to let more people in to count as family or you know, friends. Family partners were allowed to visit twenty four to seven. They could sleep on cots in the rooms, and patients were encouraged to

treat these rooms as their home. To quote a New York Times article from nineteen eighty five quote, the staff also tries to be prepared for the first visit by patient's parents, some learning for the first time that a son was homosexual, right, and that's like one of the again, the like little fucking heart string shit about it is You're just like fuck, I just yeah that moment, Yeah, and knowing that only like I don't know, probably half a parents are going to pass the test.

Speaker 2

Yeah, yeah, God, I can't even imagine what the actual like percentages and that stuff is. Yeah, I don't know, but I mean I guess for what it's worth, it is like not that it gets easier, but you can get better at it, get better at like like working to prepare and like, you know, I don't know. Yeah, I guess it's just like heartening that like there's no task too horrible that we can't at least get like improve at it. And it's good that it's like you know,

a collection of knowledge can be had. Oh, totally grow. Sorry, this is a totally just mind tangent.

Speaker 1

But no, no, because this is in the same way that the buddy system developed in Dallas spread across the country, the system of how to have an aids ward spread across the country. And like, yeah, this is the difference between like di Y fake science and DIY actual science. Is like they actual science. You build a body of knowledge.

Speaker 2

Yeah, you know, well because it works.

Speaker 1

Yeah, and like and you compare notes with each other, like like everyone at home injecting themselves with random drugs as they hope it'll cure COVID or AIDS or whatever. I know it's a weak comparison made, but we already made it.

Speaker 2

Yeah. Yeah, but no, I mean I saw that they're They're like ifromactine can cure cancer, and I'm just like, wow, I should cancer exactly.

Speaker 1

Yeah.

Speaker 2

Yeah, but it's just like these people are like making they they now just needed to be magic because it was it was it was magic before, so why wouldn't it be you know, magic now.

Speaker 1

No, And it's such a like even earlier when I was like, well, the people a dying, so they'll try anything, and you know, almost as this inspirational thing or whatever, there's actually like thinking about the cancer comparison. Yeah, that's just like the Land of Grifters.

Speaker 2

Yeah exactly.

Speaker 1

I like wonder I almost like one or why there were I mean I'm sure there were some, but like overall you read about this stuff and it is like doctors who are serious doing some stuff that would look sketchy in other situations.

Speaker 2

Yeah, you know, like I mean, look that might also just be the hindsight of it there. Yeah, as you said, there probably were like abject failures in this type of arena.

Speaker 1

Oh yeah, I mean one of the things I was reading is like basically is like, look, patients are trying anything. People are like I grew mushrooms in my refrigerator. I literally don't know what that one means, but like that

was the thing I read. Yeah, I don't know how you grow mushrooms and refrigerator seems too cold, but yeah, you know, like oh that's not freezer anyway, Like yeah, and so I think that the systematizing of this thing that's happening, I think that's what makes it DIY or non institutional science instead of like land of grifts and like yes.

Speaker 2

Yes, yes, yes, yeah. It's like it's so hard from a broad view to like figure out the words to differ between this and snake oil.

Speaker 1

Because you're like, totally.

Speaker 2

They share a lot of like nouns and verbs, but.

Speaker 1

They are different languages somehow. Even Yeah, well some of the science, I mean Ward five B was not you know, that was.

Speaker 2

Institution's part of a hospital. Yeah exactly.

Speaker 1

But then again, the last the folks in Utah who were like sneaking people drugs were epidemiologists who worked for a hospital too, you know. Yeah, and in Ward five B staff were studied extensively to see if they would catch aides, right, because they were like, no, we're pretty sure we know how this works. Now we're going to

stare and see. And at least one person did contract it after I believe she accidentally pricked herself with a used needle, right, But then other people were tested after like someone got bodily fluids in an open wound or you know, like things happen, right, but like, you know, it became a place where people were learning about the disease, you know. Yeah, and so they had this, you know, despite people being mad at the homosexual hierarchy or whatever.

Speaker 2

Like.

Speaker 1

Patients were allowed to move around the hospital unless they had specific contagious issues, and the care provided at five B soon became a model for the rest of the country. Like I was saying, one of the nurses there, a guy named Guy Vanderberg, said to ABC in twenty nineteen, don't wait for a leader, don't wait for someone to show you the way, don't wait for the right presidential candidate to show up. It's you and me. It's right now, it's right here. You are as prepared as you need

to be. I really like that. I really like the like, yeah, it's it's us, that's we. Yeah, we can do it, you know.

Speaker 2

Yeah, we have to do it. Those things are all amith the other shit, Yeah, it has to be us.

Speaker 1

Yeah. It's like a cliche I ran across that I liked recently that have been on my mind a lot, which is like, we're all we've got and we're all we need.

Speaker 2

Yeah. Yeah, I think the B side, the B side helps people because I think the A side really makes them scared.

Speaker 1

Yeah, totally. No, it's exactly that, Like it's like, Okay, we're all we've got, but that's okay, we can do this, you know, like yeah, and when we say we it's a pretty big wei Like yeah, especially when we remember to focus on our solidarity and not our divisions, you know.

Speaker 2

Yeah.

Speaker 1

For good reason. Most of the attention around the AIDS crisis is focused on gay men, but HIV can spread to anybody, and part of the erasure of women from AID statistics was based on the CDC's definition of AIDS that categorically excluded women. For years, the CDC's definition of AIDS didn't include opportunistic infections that often affected and killed

women with HIV. To quote an old Act Up pamphlet quote, for example, thrush in the mouth of an HIV infected person is recognized as AIDS, but the same fungus in the vagina, chronic candiditis is not as a result of the skewed definition, by the time women are diagnosed with AIDS, they are almost dead. Pelvic inflammatory disease and cervical cancer are killing women with HIV who are never diagnosed with AIDS. Sixty five percent of HIV infected women die without having

ever been diagnosed with AIDS. And again, that's an old pamphlet if you're listening, that's not the current statistics. The Women's Caucus of act UP got together and worked on the issue for years and finally managed to get the CDC to change the definition in nineteen ninety three. And one of the reasons that this is so important is that by this point there is funding available for a lot of AIDS related stuff, right, and so you need to not be cut out of that. And it was

made available to more women with AIDS. And that's my mutual aid in a time of accidental health war episode.

Speaker 2

Yeah, yeah, it's I mean, as as you were saying, shoot, and I can't remember if it was this episode of the previous but like or maybe in the break like this idea of like recently settled or like, I mean, you know, the E's crisis is like settled, I suppose, but not really.

Speaker 1

Globally it's not. Yeah, and in the United States it's like ongoing, but there's a lot better treatment and shit like that. You know, it's not it's not the same thing it was in the yes.

Speaker 2

Yes, yes, yes, I don't know. I mean it's just like like the again not to be too like dark time to come in or hear or ben to come in, but like, yeah, these these are the times that like fucking we can do something and we will. So yeah, not like it's gonna be okay because someone will save us. It's gonna be okay because we got to do it.

Speaker 1

Totally.

Speaker 2

It's not gonna be fun. Yeah, but we got to do it.

Speaker 1

And when we say it's okay, it's like, well it's okay in the like larger sense where bad things happen too. You know. Yes, it doesn't mean like we're gonna win everything, but it's gonna be okay, and that we're like gonna do the best we can and we're gonna try and yeah, like all this people were saying, you know, it's just like, well, you find the way to be useful and you do it, you know, yeah, yeah, well anything you want to plug here at.

Speaker 2

The end, I don't know, I have a podcast. You know, it's this is racist. It's pretty depressing too, honestly, but what but looking at look you know, as as as with uh as here, it's like, it's not about depressing, it's about looking for you know what light and connection there can be, so you know it ebbs and flows, the light and the dark, ebb and flow.

Speaker 1

Yeah.

Speaker 2

Inversely, yeah, we'll end with that.

Speaker 1

Everyone knows the plugs that I was already gonna plug and I will see you all next week with more Cool People Do Cool Stuff. Cool People Who Did Cool Stuff is a production of cool Zone Media.

Speaker 2

For more podcasts on cool Zone Media, visit our website Foolzonemedia dot com, or check us out on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

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