In March, President Obama ordered flags flown at half-mast to honor the death of former First Lady, Nancy Reagan. Remarking upon Mrs. Reagan’s time as First Lady, Hillary Clinton claimed, “because of both President and Mrs. Reagan—in particular Mrs. Reagan—we started a national conversation when before nobody would talk about [#HIV/#AIDS].” Since many people today aren’t old enough to remember the Reagan administration’s disastrous indifference to the AIDS epidemic, I asked former activist and survivor, Dan McCune to share his firsthand experience.
DM: I used to carry a picture in my wallet, it was a group of maybe 20 or 30 people. They’re all gone, except me. So I have what’s called survivor’s guilt. I can remember we had parties for people who were going to go to their doctor to be put to sleep. And the doctors did it. We had a party to say goodbye and they would go off and we’d never see them again. So when people say that euthanasia and having a right to die is a new idea, it’s not. Probably a lot of the AIDS doctors would have gotten in a whole lot of trouble, so it was very quietly done. But it happened.
The Reagans. Ronald Reagan never mentioned–people were so mad at Hillary Clinton–Reagan didn’t mention [HIV/AIDS] until well into his time. People were dying left and right. But it was a ‘gay cancer’, so he didn’t much care.
ME: What got him to care?
DM: I don’t think he ever did.
ME: What got anyone to care?
DM: Elizabeth Taylor started the dialogue in terms of high-end people and getting money donated and getting the discussion happening. After Rock Hudson died, cause he was her buddy. She was really instrumental in starting up a lot of the AIDS clinics across the country, she was really big. Rock Hudson dying brought it into someone that everybody knew and then she took over and did a good job. She should probably be mentioned in any article. Had Hillary Clinton said “Liz Taylor started a dialogue,” I’d say she knew what she was talking about. She [Liz Taylor] kind of did it from the inside, while ACT UP did it from the outside. People were really ready to listen to Liz Taylor.
First of all, when I first got diagnosed there were no drugs. It was my 40th birthday, John [my partner] and my birthday were the same day, so for our 40th birthday we went down and got diagnosed.
ME: What year was this?
Every plan we ever made for the future, it was like, there was no future. And I was in a motorcycle accident shortly thereafter, and I took a quick settlement because I figured I wouldn’t be around that long, but here I am. Both John and I thought we’d never live to see the year 2000, and he didn’t. He died 6 months beforehand.
But I think what made people care was when AZT [azidothymidine, an HIV medicine] came out, there were meds in the pipeline and the FDA said they had to go through all this testing, make sure they’re not toxic, not going to kill people, but we were dying anyway. It was like, ‘fuck you and your regulations’, and they said in 10 years you’ll have the drug, but we didn’t have 10 years.
They put us on AZT, it was a drug used for something, I don’t remember what exactly, but they put us on very high doses of AZT. It felt like there was a wire wrapped around your head all the time. People were sick all the time, I think they killed a lot of people with it. A lot of people that weren’t that strong anyway, they gave this drug, and they couldn’t handle it. A lot of people just decided–I remember a few people were that fairly healthy, we had their goodbye party–they couldn’t take the AZT anymore, just couldn’t do it.
I’d go in and see friends who’d got pneumocystis pneumonia [a particularly serious infection for those with HIV]. They’d see ships going by on the fifth floor of the country hospital, because the virus penetrated the membrane around the brain. So, my biggest fear was that I was going to lose the ability to think. That scared me more than dying. The fact that I would be alive and not be able to be a rational human being. I think that’s what scared a lot of people. They started to hit the mental part, they’d say goodbye
A friend of mine was put in the hospital. One day we were taking care of him at home and the next day he was in the hospital. And they had the cart outside, we had to put on a gown and gloves and all this, so we’d put on all the stuff and take it off when we’re inside. It was like, ‘fuck you.’ I remember one day he had a little cut on his hand and he asked for a Band Aid, I remember the nurse opening the door, and throwing the Band Aid in and slamming the door. Because the nursing staff didn’t want to take care of us. The only ones who took care of us were other gay men. Even when the straight people got it, the people who took care of them were gay men. And it was like, call us sissies if you want, we were the ones who had the guts to take care of each other and anyone else who got the disease. At the hospitals, on the AIDS units, the orderlies and the nurses pretty much stayed out of the room. Didn’t go in the room, they had all the gowns, it was totally impersonal, all you saw were eyes. The nurses came in all gloved they said you have to put this stuff on, we’d say ‘fuck you, we’re not gonna put this stuff on. I live with him, I’ve lived with him for years, I’m not gonna put that stuff on.’
I remember Jack, he was sick, I went into his house and I was taking care of him. I was hungry but I was afraid to eat the food. So we were given that fear. I took care of him but I was afraid because I hadn’t been diagnosed yet. We didn’t know how it spread. We just didn’t know. Then they started talking about the fact that it was through sex. We had just become liberated enough to be able to have sex, then all of sudden we’re told we can’t have it. So, the gay community wasn’t happy with ‘gay cancer’ either and I think they pretty much denied that it existed just as much as Ronald Reagan for a while. But it got to a point when there were just too many people dying and we had to step up. Ronald Reagan chose not to step up and I think that’s when ACT UP came into the picture.
There was a gay pride parade in New York, and we were there because of the Gay Games. We were told that we couldn’t march down Fifth Avenue because ACT UP had gone into St. Patrick’s Cathedral and interrupted the mass. Because the Catholic church, to this very day, says that condoms can’t be used because whatever, so people were dying. Bisexual men were having sex with men then they’d go have sex with their wives, and the virus would be passed on to children. So, by this point we knew it was sexually transmitted, we knew that latex condoms work, and the Catholic church didn’t want anybody to have latex condoms. They were denying the fact that condoms should be shipped to Africa. There was sexual disease in Africa but they still didn’t want them to have condoms. So we demonstrated against the Catholic church, we stopped the mass. But, the gay pride was after that happened. And ACT UP said fuck you, we’re marching down, right past St. Patrick’s Cathedral again. We got to the cathedral and there were cops everywhere. It was actually on a Sunday, come to think of it.
So there were two parades, there was all the people who followed the law, and there were enough people who didn’t, that the law was not gonna stop us. But I think ACT UP is the reason why people started to look at it. Why the FDA started to change their view because ACT UP said we’re dying here. We had those shirts, ‘Silence = Death.’ It was. We had to disobey the laws in order for the laws to change. Any change, when people are content with the way things are, that’s what’s required.
When Trump comes into the fact that people shouldn’t interrupt his freedom of speech, when you see something that’s any kind of phobic, you have to be able to speak up, to say, ‘No, this is wrong, now shut your fucking ass down.’ And it worked. They opened up the channels, they had Bactrim that they’d give you if you’d get pneumocystis pneumonia so I took it prophelatically which would also make you sick. So, I’d take AZT and Bactrim, the two drugs that made you sick.
The quilt. We had sewing bees for the quilt. As they were dying, some people would say what they wanted on their quilt and they knew that we would do it. One day I was sitting working on the quilt and I said fuck this. That’s when I joined ACT UP.
ME: So ACT UP didn’t make the quilt?
DM: No. The quilt project was very different from ACT UP. I don’t think I was angry at first, I was just scared. But after a while, after people died, and as less and less of the people were still alive in that picture, I got angry. It’s like, ‘fuck this, this is ridiculous.’ And when we heard Reagan never really talk about it. I think he mentioned it in one of his State of the Union things, I think it was ’85 then he mentioned it again in ’87. [laughs] Good for him. Nancy Reagan never did. Which is why I got kind of ticked off at Hillary. And I don’t know why she said that.
ME: We were talking about it the other day, you said you think she was mistaken.
DM: She was mistaken, obviously, but how in the hell did she get that mistake? I think she really felt that they did do something, but she was really wrong. I don’t know how she could not know. I don’t know how she would think that nobody would call her on that.
ME: ‘Cause everyone who was around is dead.
DM: [laughs] That’s true. A lot of younger people wouldn’t know. In LA, for example, there were the old gay people and the young gay people and this whole section in the middle that was dead. I think normally the way things worked in the gay community, was people that were 18 learned from people that were 25, but there were no 25 year olds for the 18 year olds. So there was a whole generation of young gay people who had to figure it out for themselves because there was just nobody there. We still have ageism in the gay community, so they didn’t want to listen or deal with the older people, because why would you want to do that, and they were… so I look back and I like what the gay community has done. I think they’ve done a good job. Marriage became very important.
I had sex everywhere I could have sex. That was our identity. Sex was the gay community’s identity.
ME: Do you feel like it’s moved away from that?
But I think probably the fact that part of sex is drugs. And I don’t know how much of that is still true. I do know that as of 14 years ago, when I first got clean, we still had AIDS units in hospitals, now they’ve pretty gone away. They don’t have AIDS units anymore, they just have regular beds. They used to have AIDS wards where everybody on the floor was an AIDS patient. Now there are so few of us going into the hospital dying, that we don’t have–all the nurses had been specialized in AIDS care. We’ve moved on to other things. My doctor is one of few AIDS doctors.
The doctor that told me I was probably not going to make it to 40 died. He didn’t die of AIDS, he died of a heart attack.
ME: And you’re 70 years old.
DM: I am 70 years old.
But there were some good things to it. It’s like because we thought we weren’t going to live, we traveled, we did a lot of stuff that I would have never been able to do now. We had the experiences and John didn’t live, so we got to live. I think when you’re given what you think is a death diagnosis, you kind of live life a little better. I think we did. We enjoyed the hell out of our life. And we didn’t use drugs all the time because we traveled a lot.
ME: Crystal meth has been part of the community, hasn’t it?
DM: Yeah. The gym that I went to—believe it not I used to the gym on a regular basis—you go into the locker room and everybody would be doing crystal.
ME: Do you think that propelled the epidemic?
DM: I think drugs do. It was sex, drugs, rock n roll. Gay sex was all based around drugs, having the right combination.
ME: Once you’ve crossed some line in terms of social acceptability, do you think it’s easy to cross the next one? Do you think that’s true for everybody?
DM: I think so. I also think as a society, it’s not as bad now as it was, but when I grew up, you learned to hate queers and then you found that you were. Didn’t mean you hated them any less. There was a lot of self-hate. So, the cycle was, you felt gay sex was dirty, so you took the drugs which allowed you to have sex, which perpetuated unsafe sex. Even when it was known that there was a sexually transmitted disease, you still wanted to. So, I think the self-hatred that was brought into the gay community played a big part in ‘who gives a fuck, why not die young.’
Then, when I got clean here, there was an AIDS housing initiative. I don’t know if it still exists. One of the guys who lived there came to a [12 step] meeting, so I said I was HIV positive in the meeting. When I shared, he came up and said, ‘Why bother? Why are you bothering getting clean?’
I was already on [medications] at this point. Some [medications] had to be taken four hours before a meal, some had to be taken two hours after a meal. The problem when using drugs is, you don’t necessarily know when your meals are, or when you wake up. So, I’m surprised that I lived through that, because I didn’t know when to necessarily take those [meds]. But getting clean, I was able to do that. Plus, there haven’t been any new [meds] coming around for a while. They’ve combined [meds], so you have to take less.
So, that would’ve been 14 years ago, people were still, ‘Why bother getting clean.’ Of course the laws here are, if you have sex and don’t tell somebody first, you’re breaking the law. There’s a law about that. Which is a scary thought because unless you have them sign a paper saying that you told them…
ME: Right. It’s your word against theirs.
DM: Yeah. ‘He never told me.’ There was talk towards the end of Reagan’s term: People were advocating basically concentration camps. ‘They would be nice,’ they said, but if we took the people that were HIV positive and put them in these camps and closed them, that that would stop the spread of HIV. I think the straight men were so afraid of the disease, they were coming up with these ideas of how to separate everybody out. It was the gay community saying you’re full of shit. But that was the talk. Even in California, some of the congressmen, the Republicans, a guy by the name of Dannemeyer, advocated the camps. So, they were talking about camps. We still have some of the laws that were passed, like gay men could not give blood. Still can’t, by the way. I think they loosened it, but that was a disqualification for giving blood. Which I know up until recently that was still true. Even though they have tests to tell.
ME: I think now it’s you have to be abstinent for a year.
DM: There were all these laws that were passed. Some states like Ohio still have it on the books. I forgot about the camp idea until I just mentioned it.
ME: Yeah, I never heard about this.
DM: Yeah. There were [internment] camps that were used for the Japanese during WWII that still existed in California. They didn’t exist as camps but the facilities were there. People lost their jobs so they lost their insurance. Then you can’t get insurance because you have a preexisting condition. So, of course once you start taking meds, the insurance companies knew. Plus if they found out, if you lied and got insurance, if they found out they’d disqualify you anyway. But just like, it was the trans people that made Stonewall happen, it was the sissies that were the AIDS votes.
I think the confidentiality laws have tightened up pretty much but once upon a time if some insurance company found out, you couldn’t get insurance, even if you lied, ‘cause they knew.
ME: What do you think is the most important thing LGBT people can do about today’s struggles for equality? You guys got something done; it’s not as bad as it used to be.
DM: Yeah. On one hand I say realize that things can change. And that they change, so not to be defeatist. Things have changed a whole lot, I’ve seen the changes. Then the other side says stand your ground. Things don’t happen just because they should. Half of me says things will change, but the other half of me says they won’t change unless you make them change. If it wasn’t for ACT UP, some meds would probably just be getting to the tunnel now. When I was 40, I was told I wouldn’t make it to 43. John only made it to 54.
When people are dying, you can’t be silent. I think one of the reasons why things changed is because when people saw that we were there, and visible. I can remember the [gay] bars in Cleveland, there was one, in this Italian restaurant, this lady sat in the back, she’d buzz you through the door, you’d go down the stairs through a hole in the wall, and there was a bar. There were not signs up at the [gay] bars. So when I moved to California it was like, oh my god! I was finally free.
ME: As trans people have more visibility these days, it seems like we’re at greater risk. Visibility and acceptance are two different things.
DM: You have to maintain the visibility. You’re not going to get acceptance right away. People didn’t like ACT UP. People in ACT UP got the shit beat out of them. People didn’t want to listen, even members of the gay community said be quiet. And it wasn’t easy, it doesn’t happen overnight. But visibility is probably the biggest thing to make change. Change comes through visibility more than anything. But when you first become visible, you’re going to get a backlash. This is why I feel that things are going good because there’s a backlash happening and the visibility that goes along with it. That’s the pattern, the changes are coming because people are pissed off about it.
ME: That’s a nice way to look at it.
DM: But you see it all the time. You see it on TV all the time. I watch the news, it’s on the news. There are people actually on the news who are pissed off because some trans person was beat up or something happened.
ME: Anti-LGBT legislation has been introduced in like 44 states in 2016
DM: When people know that their brother or sister or cousin is gay, it makes it harder for them to hate. Not that they change overnight. And it’s the same thing. I’m sure that trans people learn a lesson about hating trans people, the same way with gay people who hate gay people. There’s a lot of self-hate that has to be dealt with. So anger has to kind of be tempered, within the community. Because you have to be there for each other. We looked like angry motherfuckers, with ACT UP.
ME: Didn’t you guys have die ins? Just go out and–
DM: Lay in the street. Yeah. People drew the outlines around you. Carried coffins.
ME: Anything else you want to share?
DM: Visibility is the key. At first there’s going to be backlash. You have to not be angry, well you can be angry, but don’t show your anger. Because what’s really gonna piss off a straight man, someone angry, or someone who just stands there and smiles. Be visible, don’t show your anger. The fact that people are lashing against you is a good thing because that means they’re scared. That’s the beginning of the change in values. Things are getting better. Things do get better.