San Francisco's Year Zero: We Were Here

There was nothing extraordinary about the fact that you'd lose the

people that you love, because it's going to happen to all of us. It's

just that it happened in this targeted community of people who

were disenfranchised and separated from their families. And a whole

group of other people stepped up We are not some network of people

who just like to have sex. We are not some ephemeral subculture that

comes and dissolves and goes. This is a community that was tested in a

way almost no community on Earth is ever tested, and succeeded in what

it was trying to do, which is save as many lives of people as it could,

stop the civil rights attacks and then try to use that example to

transform the world. If you're ever facing a natural disaster as

extraordinary as AIDS was in the last quarter of the last century,

you should be so lucky as to be in a community like the queer

When I talk to young people particularly, they'll say, what was

it like? I mean, the only thing I can liken it to is a war zone, but

most of us have never lived in a war zone, but it was...

You never knew where the bomb was going to drop. I decided to do this

interview because I've- I've been around for the entire epidemic, and

I've seen so many parts of it, and I think there's a lot of people

from, I mean, none of my friends are around from the beginning. So I

want to tell their story as much as I want to tell my story. I think

I came to San Francisco back in the late '70s. You know, there were

more gay people coming here. There was all these love children. It was

right at the end of the hippies. You know, and everybody... I mean,

if you had a bus ticket, it better be saying San Francisco, you know,

because that was the place to come. I was the dancer. I thought I could

dance better than anybody on the West Coast. Centre stage, I would

get up there. I'd climb up on that stage, and I'd dance myself into a

frenzy every Sunday night at the tea dance. And if you got too close,

you might slip off the stage because you were too close to me.

But I thought I had it goin' on. My dad said one day that I should sell

flowers. That's a good business. And I thought, I'm going to sell

flowers in San Francisco because, you know, they got these songs,

Where Have All the Flowers Gone and If You're Going to San Francisco,

Wear a Flower in Your Hair and so I was ready for it. A friend of mine

came up in a pickup and took me right over into the Castro on 15th

and Noe, and I've been there for 28 years. Hey, I'm one of the family

members. You know, come buy my flowers. So I would put up these

rainbow flags, and I, you know... And you could see 'em from a block

away. If you looked down the street, you could just see that little

ribbon until all the colours faded. I always knew I was going to come

out to the Bay Area. And I think a lot of us came out here because we

didn't quite fit where we were. Back in college, I helped start the

first woman's newspaper. Uh, we started the first childcare centre.

Stuff like that. So I was very involved. We had a women's centre

on Haight Street, so I started going to the women's centre, and we

sat around and said, let's open up a women's clinic, and then we just

did it. It was the era of illegal abortions. It was a time when we as

women weren't as educated about our body. I was getting a little older,

my later twenties, and I thought, Eileen, you might want a real job

sometime. So I thought, I'll just go to nursing school and see how I

feel about it. And I loved it. I loved bedside nursing. Once I

started working in the hospital, there were all these gay men, and

it was really fun, 'cause we'd go clubbing together, to the I-Beam,

to the Stud. You know, places like that. I'd dance and go home and go

to sleep. So, you know, we had a good time. It was like really fun.

Unfortunately, none of those guys are alive today.

You know, it's so the end of the hippie era in America, and I was a

queer kid who knew he was different, didn't really know what to do...

And basically left Buffalo, New York, and hitchhiked around the

country for a number of years with the guy I was sleeping with, and

deliberately tried to be free was our, sort of our goal, and I

remember at one point, uh, thinking, well, I've got nothing but the

backpack and my boyfriend, and we literally actually had nothing. Uh,

I guess we must be free. And it was that sort of mentality that we were

pursuing. A phrase that I've sort of come to like is crazy dreamers,

and I would say at that time, I thought San Francisco and

California was like full of crazy dreamers, and that was where I

wanted to be. I belonged to a little commune of leftover '60s

folks who were trying to establish an alternative lifestyle, and I was

struggling with was I gay, was I bisexual. You know, what is going

on? So I come out of the closet in this terrifying moment of coming to

the gay student union at San Jose State in September of 1975 and the

minute I walked through the door and I'm sure most gay men of my

generation, most gay, queer people are going to have the similar

experience, it was like you're home. It was like it all felt familiar.

It all seemed like, oh, how did I not realise this is where I was

supposed to be. My father really wanted me to get a

master's degree, and I really didn't care. So the compromise was

I would go to San Francisco State, because San Francisco was where I

wanted to be. I liked the people here. They just seemed more open,

and I always wanted to meet a nice blonde surfer. When I moved out to

California, I was still in the closet. I didn't come out of the

closet until after college. Um, I came out with a bang. I was in a

production of The Boys in the Band For quite a few years, I was a bit

of a workaholic. I was in my studio all the time. By the time I was 27,

I was having one man shows in New York at galleries, good galleries

in New York, and I didn't know it was supposed to be that easy. It

was just easy, and I was pretty obsessed with my work, and I was

for quite a long time, and until I got sick, really. I was first

living in the Haight, and I remember walking down Haight Street,

and there was this guy handing out leaflets on the corner, and it was

Harvey. It was his first campaign, the first time he was running, and

he introduced himself, and I talked to him. So I went to work for him,

and I was handing out leaflets, and, you know, door hangers and things

like that. And that was very exciting, 'cause I had been

somewhat political in college. I had gotten sick of it because all

my roommates were SDS, and it was very militant. And Harvey was just

a lot gentler and a lot more fun. My partner at that time, Steve, was

also fairly political. Any time there was a march or a

demonstration or a candlelight thing, we were always there. Um, it

was important to us. Those were the things that made us feel connected

Castro Street was just starting to happen, and you would always run

into people you knew. And it really felt like a village, and the Castro

just started to feel like the If you took a bunch of young men

and said, have as much sex as you can have, how much sex would they

The sense was if gay is good, gay sex is good, you know, and more gay

sex is even better. And people often say of my generation that we

I remember, like, January 1977, I went right down to Castro Street.

Here I've lived in Greenwich Village all these years. This is

going to be amazing. I went down and, you know, as you know, it's

like one block long and like a block in either direction, and like

there were a lot of gay men, and as with any group of people, it was

already pretty quickly falling into little cliques. You know, there was

like this kind of military look, and the kind of the outdoorsman

look. And there was a preppy look, and there was already this like

kind of western look and a leather look. It was already starting to

happen. People quickly identifying as certain male images. And I, you

know, I just didn't like fit in. There wasn't like a longhaired,

high voiced, basketball look or something, you know? I was just

kind of me. I mean, I tried. I would go and pick up guys and bring

them home, and like they would go, want to go from zero to 60 so fast.

I couldn't do it. I was terrible at anonymous sex. I didn't know how to

go like, or, you know, I just, I couldn't do it. I was like, hi, my

name's Ed. Who are you? You know, and it just, it didn't, it didn't

click. I tend to be somebody who has a

partner almost my whole life. I've always been in open

relationships, so my sexual outlet was always the bathhouses. And they

were there, and they were fun. And I would go with my friends. It

wasn't like something I would sneak out and go on my own. It was this...

It was something of an outing, we would go with friends. I remember

coming out of one bathhouse at, like, three o'clock in the morning

and walking home across the city in the middle of the night and just

thinking, gee, if my mother could see me now, she'd be just shocked.

But it just felt so good. It was like a club, and we called it

church. It's going to church. Part of it, you're having sex to

have fun. Part of it, you're having sex to find love. Part of it you're

having sex to rebel against the people who said you couldn't have

sex. All of America was feeling very confident that you could be

much more sexual, and that was OK. Venereal diseases and unwanted

pregnancies, it's all curable with a shot or a pill or something to

It's May of 1979 and the verdict has come down, a verdict on Dan

White for the murder of Harvey Milk, and we're all at City Hall

protesting. There's this enormous rage. Thousands of people arrive.

The police attack. We're tear- gassed, we're beaten. Police cars

are burned. So this is not a community that's feeling really

good about the political establishment going into the 1980s.

The next night is Harvey's birthday party. And so the streets close off.

Tens of thousands of people show up, and they give very, very angry

speeches. Anne Kronenberg gives a very fierce speech and at the end

of her speech she starts a chant. Welcome to the '80s, welcome to the

'80s. We couldn't know, of course, that even then, HIV was present.

HIV arrives first in San Francisco probably in '76, and by 1979,

probably 10% of the gay men in that crowd were infected. And by the

time we discover that there is such a thing, AIDS is even happening, in

June of '81, roughly 20% are infected. And by the time we

actually get the test, so people can find out if they're infected,

close to 50% of the gay men of San '81 was a big year. I landed a

really good job, and for the first time, I was part of a large office

staff with a lot of other gay men. I was finishing my graduate degree

in creative writing. I went to Europe, I had this great job. All

these new gay men I was working with, and, um... I felt like, oh,

the '80s, something's gonna shift. I moved to New York in '71. Now I'm

really here in San Francisco in '81. And... And so that is when

everything changed. Because that was... You know, that was the year

in the Castro, running down. I will never forget it. I went to the

Castro Theatre. Great double feature. I think it was like Now

Voyager and Casablanca on the big screen. And I remember running down

to the old Star Pharmacy cos we were gonna smoke some pot and we

didn't have any papers. And I I remember looking in the window of

Star Pharmacy, and there were these little Polaroid photographs that

this young man had made of himself. There were at least three, maybe

The first one was like this. And And then there was another picture,

and he had taken his shirt and pulled it up like this. It was of

his chest. These big purple splotches. And they were just on

the window, and underneath it was a There's something out there."

Something like that. And, uh... Oh my God, it made a huge impact on me.

And then I was really stoned, and I went and watched the movie, and

with the whole movie, I was just thinking about that. It really made

I went to see the movies with a friend of mine named Michael, and

he and I worked together, and he had woken up kind of recently with

this red splotch in his eye. And he kept going "What is this? What is

this?" And he had been going to the eye doctor, and they hadn't been

You know, it turned out to be KS. He had KS in his eye. So it was

right there in the movie lying with us, like already. Like it was

REPORTER: The pictures show the progression of a few red bumps into

Kaposi's sarcoma. It's a rare cancer normally found in the

elderly, but now it's striking young men, most of whom are gay,

like Bobby Campbell. Tests are still being done on the red bumps

on his foot. I don't know how I got it. I fit

the typical Kaposi's patient in my age in that I'm gay and... But I

The first time I heard about AIDS, I think it was called the gay

cancer. It was KS. It was terrifying. And we had friends who

were dying right at the beginning of the epidemic. I mean, this one

person who helped my career greatly, who was a curator of the Brooklyn

Museum, gave me a show at the Brooklyn Museum, and he died before

the show happened. And that was... Looking back, I know he died of

AIDS, but back then there was no I was hanging blood one day in the

hospital, and this was before the times that you wore gloves, and the

infectious disease fellow came in and said, "Eileen, put gloves on.

I was selling flowers at that time, and there was a guy down the street.

Five days. One day, he went to the hospital. Five days later, he was

dead. I'm looking through the gay periodicals, and in one of them,

"new cancer described". And so I'm aware something has occurred. I

think everybody who was paying attention to the community noted

this could be something to pay People were coming in with

pneumocystis pneumonia who were quite well, you know, one day. You

know, out there swimming, playing tennis, you know, buffed, coming in

and were dying. I mean, were dead People would come in with Kaposi's

sarcoma. There might be one little lesion or two little lesions, then

they would grow. And maybe a lesion would cut off circulation in their

leg, and their leg would balloon up. Or it would get into their lung,

and they couldn't breathe, and Very early, certainly within the

first 18 months, I assumed that a number of my friends were likely

infected, and probably myself and all the people in my group were

From the beginning, I just couldn't stand the homophobia and the

And the fear. There was incredible fear that these people were coming

in and dying, and nobody knew what There were people who were afraid

to go into rooms, and so I found If you were not a family member,

they wouldn't talk to you. So if somebody's partner was in there,

the doctors might not explain to them what was going on. So I found

It was a weird time in the hospital because they didn't want to be

associated as an AIDS hospital because no one would want to come

to the hospital if they knew we were an AIDS hospital. So there was

I remember my mom. She was saying, "Why do you have to do this?" You

know, cos I've already put my mom through lots of stuff. And I

remember saying to her, "Mom, I Cos you're there, and this terrible

thing is happening and you're a nurse and you can help. And

sometimes that's just helping somebody die. But you know, I

Something was happening. These gay men were showing up at places like

United Way, looking for a support group or um... Social services,

because they had no... They had no I saw an ad in the Bay Area

Reporter. Shanti Project was looking for people who'd be willing

to be a buddy to someone with this illness. And I took the second

Shanti volunteer training that occurred here in San Francisco. And

I got matched with someone immediately. I hadn't met a person

with AIDS yet who was just kind of like off on his own and... Like

expecting that someone was gonna I just remember going to his

apartment and here's him opening the door. And he said his name was

And, you know, lo and behold, my way of being with gay men suddenly

Like, hi. Like, who are you? How I took my training in July of '83,

and of course I was close to all these gay men. There were seven gay

men working in this office, and I was coming in and telling them,

like, "Oh my God, you know, they think it's transmitted sexually."

"And they're thinking condoms is a way to protect us, and they're

And I was already disseminating information. Back then especially

there was this whole dynamic about how are you getting it? Who are you

getting it from? Who's giving it to who? And in that little office,

some of that feeling... I'm pretty sure they had all sex with one

another. But once again, in my kind of mismatched way, I hadn't had sex

They all got infected, and they all My partner, Steve, was an

immunology researcher. We'd been together for quite a while,

probably about eight years. And all of a sudden, people were coming to

him and asking him to explain what's going on, and it was

interesting. I mean, his self- esteem sort of turned around

because he was a holder of very important information. He ended up

working in Jay Levy's lab, one of the most important AIDS research

We got tested because Steve took my blood and brought it into Jay

Levy's lab. So we were some of the first people who knew we were

positive, because the test wasn't When Steve came back from Jay

Levy's lab and told me that we were My life changed completely. I had

had five people working for me. And I let them go, and luckily I had

saved some money, and I just Here am I, the kid from San Jose,

come up here. I'm now the vice president of some little gay

Democratic club where maybe 15 or 20 people show up. And suddenly,

the community starts to die of these extraordinary, horrible

diseases. And they want help. How do we, you know, how do we keep

them alive? How do we make sure they don't die of starvation

because they can't cook? And meanwhile, there's all these

attacks that are occurring. Meanwhile, there's this tremendous

debate within the community. Maybe these are all wrong decisions.

Maybe we shouldn't be sexually free. And all these other debates are

occurring. But the leadership, such as it is, is guys like me, who are

suddenly in this little group. We're forced to deal with this

unbelievable circumstance of a community that, in addition to

being hated and under attack, is now forced alone to try to figure

out how to deal with this People would see my picture in the

BAR and come up to me and say, "I was diagnosed. What do I do? Do you

know a doctor? Is it true this We held a series of town hall

meetings, and a group called Mobilization Against AIDS was

created. And I was their first ED, and that's how I formally enter

into AIDS work. Mobilization's purpose was to demand a greater

response to the HIV/AIDS pandemic. The first response was to try to

take care of the sick. The second response was to try to stop people

from getting infected. The third response was how do we advocate?

How do we now get other people involved to be able to generate

resources? We're here to try to spark across the land general

support for the actions that are being led by people with AIDS to

try to get the nation to move into an effective response to this

We lead a delegation of people with AIDS to Washington. Now, here's

guys, very sick. By definition, they're end-stage AIDS. There's no

treatments to speak of. Maybe there's some experimental

treatments they're starting to get. And here they are flying on planes,

going across the country with no money, sleeping four to a room, to

be able to go do lobbying. And my belief is, all those folks thought

they would die. None of them thought they would survive AIDS.

They were doing it because they thought they would make it so other

people from the community and beyond were able to live. And that

happened many times, where people with AIDS would do extraordinary

things. That's who was, in fact, When he went to the hospital, I

followed him there. So I went to 5B, which was right here at San

Francisco General Hospital to- to visit him as his Shanti volunteer.

And 5B was a seven-bed unit in the old intensive care unit that had

been turned into the first AIDS- dedicated hospital unit in the

world. And everybody who worked there was there on a volunteer

basis. 1983, which they weren't sure how it was transmitted.They

didn't want anybody working there who was gonna have contagion

issues.So they wanted to make sure here at San Francisco General that

you were not going to be coming from that kind of fear.You'd be

This is where I started encountering like lesbians coming

and working on the AIDS unit with all these gay men who were dying.

It was so moving, because certainly gay men were- were not making a

whole lot of room for lesbians. Let's put it that way, back then.So

I got this sense of this group of people who were really caring for

Steve became more and more obsessed with trying to find out what the

latest treatments were. He wanted to save our lives. He wanted to

figure out, you know, how we were gonna beat this thing. And he found

out about a study that was done in Africa with a drug called Suramin.

And they were doing- they were doing the study here at San

Francisco General. And he got us both into the study.Across the

country, there was like three study sites. There were like 80 people in

the study, and the drug was hideous. It was, you'd go in, and it was

like two hours of IV, and for the next two days, you literally felt

like you'd been run over by a truck. And I was a wuss, and I could, I

just... After a month of this, I just said, I can't take this. It's

just, you know, I'd... I was just, it just made me so sick, and I

hated it. But Steve just kept on going, and he had had chronic

hepatitis B from a needle stick that he'd gotten in the lab when he

was working in a lab. And it activated his hepatitis, and

within-- We started, I think, the study in July. He quit the study in

October, and he was d- He was dead It was really quick. Uh, and

everybody in that study died except for me. Cos I was a wuss. I

couldn't take it. And I'm so glad I took care of myself that way.But I

talked to a doctor in the study afterwards, and he, they had a

meeting of all the doctors and people who had researchers across

the country, who had been involved in the study. They said he never

he'd never been in a room of doctors sobbing before. They had

lost all their patients very quickly.So that was one of the

first disasters in AIDS treatment.I think it really made everybody

really careful afterwards.Steve was 35.Two weeks after Steve died, my

best friend died, Peter.Two days before Steve died, another good

friend died. I mean, it was just, Steve was 35. Two weeks after Steve

died, my best friend Peter died. Two days before that, another

Apology for the loss of subtitles for 42 seconds

friend died. There was just this Within a mile of epicentre of

Castro and Market, large numbers of people died. And not just your

friends who died, but, you know, the people you didn't know, the

friend of the friend. You know, you'd go get a coffee, and the

person who used to give you coffee has died. You would, you know,

whatever it was you were... Your banker, your mailman, your... All

that mass, mass death, to the point where you, to some degree, would

stop asking if people weren't around, where they were. Unless you

wanted to get into a discussion of them being dead or them being sick.

So for a number of years, people are all assuming we've got this

disease and it's very likely we'll be dead soon.

Everybody was reading the obituaries because they went from

like this to like this. You know, it was just like, oh my God, and

everybody would get the BAR every week just to see who's gone. Being

the flower man, I was thrown into the middle of it because a lot of

people would say, "Guy, uh, my friend died, and I don't have

enough money to buy flowers, and I need some help. Can you help us?"

They wanted to bury their friends with a lot of dignity and beauty

and I came to you to help me out.You know, I'm emotional because

it's the first time I thought about it.I can't even count the funerals

that I did, you know, and if it You know, some people would bring

me a vase, and they said, "Guy, this is all I can afford. Can you

put some flowers in it or?" You know, and I did that, and I, you

know, it was never about money, it was about love. You know, it was

about these people, not letting my friends down. You know, just

Today I have ordered the closure of 14 commercial establishments which

promote and profit from the spread of AIDS.

There was a broad view that there was a sexual transmission component

of the disease. So here we are debating, how do we continue to

have sex? How do we continue to love each other? How do we continue

to be- to pursue the dream of the community that we want to have in

the midst of this plague? And so then comes the discussion, well,

the government would like to shut down some institutions, and some of

these are old, core institutions, which is the bathhouses.There've

always been bathhouses. They precede the gay community as we

know it, where gay people would go and meet and have sex. And some

people thought that was a good idea. The bathhouses are run by

irresponsible business owners who are just- don't care about the

pandemic and are ripping people off. And other people thought this is a

dangerous precedent, that your friend the government would like to

shut down these institutions. Is that OK with you? A majority of the

community felt that we were in a crisis right now, and the baths

And a lot of people were very afraid of it. And so the community

divided. And to some degree a split also between the women's community,

the lesbian community, and gay men, where gay men uh, uh, kept being

controversial to a degree by insisting on having as much sex in

as many places as they were doing. And the women's community was you

know, to some degree saying, you know, we don't know. This is not

the commu- this is not the core definitions of the community, that

we should think the community should be fighting over. We don't

think the central battles of GLBT liberation should be about, you

know, public sex, for example. We think it... There should be a

broader discussion. So it was a Since I did sit on the corner for

20 years, I just saw the progression of people, you know, it

was so scary. All of the sudden, they were walking down the street

and the next time you see them they would be walking with a cane, or

they would be in a wheelchair and that was devastating. There, I

remember him. -- oh, I remember him. Here is the gay community who are

concerned with appearances and here comes this disease that destroys

your physical appearance. That is the first think it does and people

were just losing many pounds. It look like we were looking in a

concentration camp. People were losing so much weight in their

faces and bodies so quickly. They did not know what part of the

disease was causing it. So it it was these very physical

manifestations that were horrifying to people and were very scary to

people, especially if you had AIDS and saw someone who was worse off

than you, you almost have to turn away. It was too scary. I was

losing all the fat in my face and everywhere and I would walk by a

store window and see myself and just jumped. It was like, who is

that? I remember my mother saying, could you stand on your head and

make some of the stuff flowed down to your face? Q Our skin and bone.

-- you are skin and bone. The AIDS epidemic allowed me to move into

the community and in many ways I began to thrive. It was like being

in the army. For the first time, other than being involved with my

family, I was involved with something else. I rolled up my

sleeves and I wanted to be a part of this. The AIDS ward was a

terrible and beautiful place at the same time. My primary role was to

be one of the Shanti councillors, which is someone who is trained to

sit and be and witness and have conversations and supports people

through their processing. I work with people there who were 18 years

old. We had people there who were in their sixties, but in their --

but in general, they were sexually active young men. There were people

coming in with diseases that were unbelievable and they were

susceptible to so many things. It had to be a controlled environment.

There was this idea we were there to cure and heel and not to

minimise any of that, but really, back then what people were doing it

was they were dying of AIDS and we were trying to help them as best be

called. You could go at a couple of days and no-one would die. And then

in one day, six people could die. And we saw many couples come in.

One would die, at the other partner would be there, go to the whole

process. Some time but pass and then the next lover would come in.

There was a mum who came there and one, two, three times she lost her

I would stand in the hallway are visiting and talking to a mother

and father who had just stepped out of a room who had just found out

about their son had three months to live or whatever, and the father

would stand there and go, you know, it is harder for me to find out

there but my son is a fag then to find out that he is going to be

dying soon. And there I would be When Steve died, my friends were

there for me. I felt so supported. My family was very, very much there

for me. Also, I had other friends who were sick, and so I... It

pulled me out of myself cos I could go help take care of them. And I

think I mentioned Peter, who was one of my dearest friends. He's one

of the first people I met when I moved to San Francisco. He was tall

and handsome and grew up in a trailer park. And he... He used to

keep these diaries, and he always wanted them published after he died

as "Diaries of an Illiterate Homosexual". Peter was such an

original. He was just amazing. He He had moved back here to die. He

and his lover. I had introduced he and his lover, George, and then

they moved to Rhode Island where George was from. And then when

Peter got sick, they moved back to San Francisco cos care was better

and their core group of friends was here. And Peter was getting sicker

and sicker, and they told him he had four or five days to live. And

he was just in so much discomfort that he decided to take his own

So we got together all the drugs and the cocktail that was gonna

kill him, and we had a party at his house. He was in bed, sort of like

a queen holding court. And we each got to go up and say our goodbyes.

And I remember him saying, "You know, when I was single, you were

married, and when I was married, you were single." "Do you think if

we'd both been single at the same And I said, "Yeah, I know we would

And then he gave me one of the most passionate kisses I've ever had in

I was the charge nurse in the medical clinic, and we were

starting the first AZT trials, and Doctor Jay had come on to help that.

And he looked at me one day, and he said, "I think we could do this. We

could do clinical research." And so we started the Quest Clinical

Research Centre together. You know, both of us had never done research.

We just kinda did it. You know, back then there weren't as many

regulations. The reason that you wanted to do research back then was

because there was nothing. And all you were doing was helping people

die. And you felt like you had to work on these trials and figure out

what was working, figure out what the problems were and get these

drugs approved so that everybody could have 'em. By doing this and

working really hard and getting these drugs on the market, maybe we

In the early days, I would go to people's houses. They were too sick

to come in to get their medicine. I'd go to their house, I'd draw

their blood. They would come in very educated, wanting the newest

treatment. Sometimes they would know more than I did cos they had

And I would learn from them. There You know, of course, we made

mistakes. Uh, you know, when we first started the AZT trials, we

were giving way too much. You know, that's why people got so sick on it,

If you ever come to our office, we have this picture of this guy who

is almost like a skeleton, and he's holding a sign, "man cannot live on

And every time I see that picture, it brings me back to those days of

"We need more than AZT, and we need I remember one fellow said to me,

"I'm at the end of my chemical rope." And I thought, boy, what a

These doctors were coming up with every kind of pill you should take.

It seemed like every day they were coming up with a new cure. But my

friends were guinea pigs, and those cures didn't work. And they were

still dying, and they were still dying. And not even just my friends,

my relatives. You know, my cousin, he died of AIDS. You know, and it

was like the whole family kept it, you know, zips the lip. Nobody

wanted to say that people were gay, you know, and we didn't speak about

it. We just said Romeo was sick. And he just succumbed to AIDS and

I think my biggest fears around There was a lot in the early days

of AIDS of CMV, cytomegalovirus, which attacked the eyes. And people

were losing their eyesight in a short period of time. And, you know,

I could deal with pain, or they could, you know, they could manage

pain and all that, but the idea of losing my eyesight was really... I

We worked on this trial for CMV retinitis. It infected people's

eyes. We wanted to do research, so we would ask them if we could take

And... You know, that was a hard conversation to have, but people

were into it. They were going, "This awful thing is happening, and

if I can give my eyes to advance Any time anybody is ill, you're

meeting them at a very vulnerable place in their life. And these

relationships can grow very intensely, very quickly. So it was

my job to go into the autopsy room when the pathologist would come and

And I would have to put them in this little urine container, and

then put them in a paper bag and And that was really, really hard. I

mean, these were people I really knew and loved, liked, whatever you

want to say. And it was really hard And something that I'll never

forget, actually. But one of my patient's sisters really helped me,

because she said to me something like, "It makes me feel better to

know that you're gonna be with him That I was there to watch over

these people and make sure they were treated with respect and that

their body was handled with love. And I just was so grateful for her

How deeply are Americans worried about AIDS? A Los Angeles Times

poll found that 50% of Americans favour quarantine for AIDS victims.

48% said they should be issued special identification. 15% said

We were preoccupied for those first four years with extraordinary civil

rights attacks. In 1986 in California, there was an initiative

put on the ballot by Lyndon LaRouche. It was an initiative to

enforce the quarantine laws relative to HIV in California. And

it was written in such a way as to sound medical. But the intent, as

interpreted by the queer community and everyone else, was this is to

stigmatize people with HIV/AIDS and could go so far as to have them

quarantined under doctor's orders. And when that ballot initiative

first was put forward, it was overwhelmingly favoured. And a

state-wide campaign formed, and we organized throughout California to

defeat the initiative and defeated it. And it came again two years

later. It was put forward a second time, in '88. And simultaneously

there were laws that people could be fired for being HIV-positive.

People could be mandatory tested. In other words, you could be tested

without your consent. And then those results made available to

The Reagan administration has been criminal in its response because

they thought it was a disease of the gay community. What needs to be

done is a federal programme equivalent to our effort to get to

the moon or develop the atomic bomb. If we implement that, we can stop

AIDS. But the way to go is not to start violating civil rights. It is

not to start turning American against American in times of crisis.

And I believe that when you live immorally, heterosexual or

homosexual, and you violate the laws of God - and homosexuality

does - you become wide open to I think the country as a whole

understood that the queer community was taking care of each other, that

our principal response was food banks and care programmes. And that

it was a response that America should be proud of. And that maybe

the Pat Buchanans and the bigots who were attacking us and who

basically just wanted us to die, were wrong. And at a certain point,

those attacks just stopped. They just couldn't get traction to

continue to stigmatise people with AIDS organisations were just

popping up everywhere. It was called the San Francisco model. I

think one of the reasons the San Francisco model worked was cos of

the size of San Francisco, and because of Castro Street itself,

that there was a centre. San Francisco, people came here not for

career. They came here because they wanted to live here. And when AIDS

came along, the community was sort of inherent in that. All it needed

was the AIDS epidemic to really make it coalesce. Whether it was

taking care of people's pets when they were in the hospital, or

bringing them food like Open Hand. Everybody wanted to do something.

It was a way the community came together in an amazing way that...

You know, politics had never done that. And it brought together the

women's community, the gay women's community and the gay male

community in ways that had Again and again, in every situation,

every circumstance, there's lesbians there leading the fight.

All the women had friends who were gay guys who were sick. I was

walking up Castro Street one day to my apartment, and in the early days

of these horrible tests, people would become severely anaemic.

There was also a blood shortage because of the HIV in blood.

Lesbians weren't at risk of HIV, and could donate blood, and did.

And so I'm walking up Castro Street, and I see a poster. And I believe

it was from the lesbian caucus of the Harvey Milk Gay Democratic Club.

And it said, our boys need blood. Lesbian caucus blood drive for

people with AIDS, San Francisco. And I remember thinking, this is

People came to San Francisco to go, what is happening here that the

response is so heartfelt? We make the hospital such a fantastic place.

It is also true of the Shanti Project. Literally, there were

thousands of people who volunteer thousands of hours. Every other

Sunday, there is a party here. The hostess is a travel agent called

Rita Berger. She came at Easter and offered to do and eastern branch.

It went so well, it turned out that she would come every Sunday, and

she would come this whole group of men, who spent a good part of the

week baking all the food that was going to be eaten. I got together

Apology for the loss of subtitles for 42 seconds

with some friends and we started an We should have the place where we

could sell these things. I had an idea to sell a store. I put

together a board of directors and they wanted to call it AIDS Mart. I

said we can't. I pulled rank. I was the President and it was not going

to be called that. They said how about AID-Smart. I said no. No-one

is going to shop there. I remember working the cash register and when

you are working at a store you usually say thank you to the

customer. Every customer would say it. They would say thank you for

doing this. To them, just buying a teacher or a mark would help. A lot

of people on disability, but they would come in one day a week and

were the cash register. It was the only time some of them left the

house. I felt we were more compassionate. We were going

proving its other people did not understand. It went over

everybody's head. I just remember how close that brought everybody it

together. You know, it was just, or we did not care who you work, but

we all had the same burden and that was just like the clue. Gay people

were never seen as care givers. They were seen as good time people,

having fun. All of a sudden, we were the ultimate care givers. It

changed people's view of the gay community in a huge wave. I

remember my father saying, because I was spending so much time taking

care of my friends, he said, these on family. I said, yes, they're off.

This is my family. He got it. He ended up taking care of my friends

Apology for the loss of subtitles for 42 seconds

When I was in the thick of it, I became, and I suspect many people

do, I found it hard to imagine a future. I did not look much further

than the next week or two because the whole thing was just so it

impossible to grasp, but all this was really happening. I went

through a long period of been isolated, been very sad -- being

sad. All of the death and dying had taken its toll on me. I had been

there for three years and it did cross my mind, how do you stop? How

do you stop working in a place like this? We have a local newspaper

here in San Francisco called the BAR and there was one issue where

they ran up the photographs of all the people that had died that year.

It was just page after page after page after page. All these people

died on the unit. I just felt something right here. It was a

physical quick. I saw all these faces and I was stunned by how many

of them I knew from working on the unit. And I, you know, I realised I

couldn't, I just couldn't do it any more. There are times when you

think, I cannot take it any more. I don't want to watch this, I don't

want to see it. There are just too many images I don't want in my head

and, you know, you're feeling of wanting to run away. It was my

generation that was being infected and so that, of course, made it

even heavier because, you know, we were too young to die and I felt

like I was too young to go all through this. All this loss. When

you are doing this work, you have to figure out how to take care of

yourself and not feel it all the time, but sometimes when somebody

would die and I'd find myself crying, I would feel like I was

crying for everyone. It wasn't just that person, it just felt

overwhelming and I just... Because sometimes you just had to cry. You

had to let it out. I think there were times to the epidemic when I

would hear someone was sick and it was just, I would not call them, I

could not see them, it was too much. I somehow knew my limits and I

couldn't take one more sick friend on. It felt bad, but it so easy to

become part of a care givers's group and that is your life for

many months and sometimes I could not do it, especially in the late

1980s and early 1990s. I was sick. It was just about enough to get out

of bed. A lot of times it was the side-effectss of the drugs. He did

not have time to worry about what else was happening. Tim was my

partner during this time, but he was also HIV-positive and I did not

think I could lose another partner, and I told him that. But we liked

each other and we kept seeing each other and after six months he said,

I'll weep together or aren't we? I just that, you know, I'd really

love this person and what happens happens. We would take turns been

sick. I would be sick and he would take care of me and vice-versa.

Thank God we were never sick at the same time. He was not feeling well

and I called the doctor and I said, I am going to the hospital. I

bundled him into the car and we were driving down the street and I

guess he had an aneurysm. I was driving Atmph, trying to open his

mouth and telling him to breathe. - - driving Atmph. I ran every like.

Thank God I didn't kill anybody. By the time we got to the hospital, he

was dead. It was so quick. I was in a total state of shock. I thought I

was going to lose my mind. It just felt like it would be really easy

to not be here any more. Most of my friends were dead and there did not

seem to be any reason to stick around. But I didn't, and I am glad

I did not kill myself. It is the only time I had been suicidal, and

it was odd. It wasn't a crazy suicidal. It just felt very light,

I don't need to be here. There is no reason for me to be here. It

seemed very logical. I still can There was some hope on treatment

and research. Some of the money was flowing. Experimental drugs were

more accessible. The activists were meeting the pharmaceutical

companies to talk about medicines. And then Act Up came along. There

were political artists. -- they were. It transformed the dialogue.

Fight back, or fight AIDS. -- fight AIDS. He is the first time I

crossed a picket line. I wanted to go into the AIDS Conference because

it was information I wanted to get. What they were screaming and

hollering about, I agreed with, but then I realised that everybody is

doing what they need to do. They need to be out there screaming and

hollering and pushing because things don't happen unless you push

and I needed to go in and get that information so I could take care of

them. Once I figured that out, it I mean, that was when drugs weren't

on the fast track, where it took ten years to get a drug approved,

and the activists really worked for Neil Yeager. James Martin Case.

One of the way I came back into the world was through the Names Project,

which was the AIDS memorial quilt, which Cleve Jones started. And my

friend Marvin Feldman. He came up with the idea that people would

make panels memorialising their friends and children and lovers. It

was a creative, positive way to focus their grief then sew it all

together and make a powerful When they went to Washington and

unfolded those blankets, it was like, you know, lotus flower after

lotus flower after lotus flower. And each petal was a person, you

know? And it was so powerful. It was so powerful you didn't even

have to say anything. The tears How are you? I'm good. Nervous, but

good. Sure. The results are negative. OK. Good. Good. I still

wanted to be involved. After my work in the hospital, it was fairly

easy for me to translate, take those skills and move into working

in testing clinics and working with people who are at risk for HIV, as

well as occasionally having to tell people that they were infected.

When the test occurred, we could see how we're doing on prevention,

and we were able to turn that around. So the likelihood that more

and more people were being infected had changed. So less despair, less

sense of absolute crisis. We're now getting into a sense of maybe

there's a place to go here. Something seemed to be working. I'm

not saying that there was a cure, but there was a slowdown. People

weren't dropping like flies any more. Some people were hanging on.

And there was this one guy, he was in a wheelchair. He used to come by

on a bicycle, and then he was in a wheelchair, and then he had a patch

over his eye. And I hated to look at him because I remember when this

guy used to come by on his bicycle and buy flowers for his sister. And

we would just laugh and everything. And I couldn't laugh at him any

more because he was coming by in a wheelchair, and it was like he was

almost on his way out, and I just thought, "God, where are you?"

And he was one of the first who, the next time I saw him, he wasn't

in a wheelchair. He was walking. He had a cane. And then the next time

I saw him, he didn't have that eye patch on anymore. And then, hey, I

swear to you, yesterday I saw him at my flower stand, on his bicycle,

and he was back. He wasn't back like he was in the beginning, but,

you know, I'm not the way I was 20 years ago either. But he was there

and he had gone through the storm. And he had weathered the storm, and

his spirit was just as bright and effervescent as it was in the

The Washington Post came out with a headline, and it showed death from

AIDS, and it was a graph going down. And it basically said cocktail

This means that AIDS work as we I remember my friend Ben saying in

the old days that he would never go to Costco and buy one of those big

things of toilet paper, cos he didn't think he'd ever use it all

up. And now he can. That's the difference. I would never take a

commission more than five or six months out, cos I didn't think I'd

be able to finish it. Now I'll take a commission that's, you know, a

year out. And now I have a partner whom I love and whom I hope to be

with for a very long time. And so I'm imagining a future. I'm

allowing myself to imagine a future. And that's scary, too. I mean, I

can feel it right now. There's like butterflies in my stomach. It's

like I'm hoping. I'm feeling that hope again. And I could lose it,

and I have to remember that. Cos you get sick and, bam. You just

My friend John, who has studied Buddhism, talks about this metaphor

of people who have been through some huge experience of loss, who

cannot find their way back, if you But they still walk the Earth

hungry. Hungry for connection. Hungry for some way to regain a

sense of life and balance. And I do, when I walk through the Castro

sometimes, I see people who haven't been able to do that. And that's

something that could have easily happened to me, in that I could

have, you know, become one of those hungry ghosts. And, luckily for me,

I met someone, and I encountered life again. Here was this man

walking down the street, and thank God I got it together, and I said

hello. And he's younger than me. Like much younger than me. And it's

been a powerful, powerful experience to love and be very

close to someone who's younger than me, who did not have the experience

that I had with the AIDS epidemic and all that terrible loss. And go

on with my life having that inside me, and... And it not be the all-

consuming experience that I had had. And as much as I think about my

father and what he went through in the war, I don't want like my war

In January of 2007, I became the executive director of a GLBT

Historical Society in San Francisco. And it surprised me that the

conversation about AIDS that I had been having for so many years

wasn't still going on in that group or in the community of the GLBT of

San Francisco. For me it had continued, cos I was doing

international AIDS work with AIDS groups. So suddenly no one was

talking about AIDS. There weren't people with AIDS who everyone was

sort of... If they were around, it took me a while to figure out who

they were. And an entire part of how I had perceived the community

I don't have to worry when I'm old, you know, in looking back at my

life, that I didn't do anything. And in terms of my politics, this

was the thing that I got to do the most. Without all these people

participating in these clinical trials, we would not be where we

are today. And I really wish that some of them were around today to

see where we are, because I don't This tragedy, it taught us how to

be humble. It taught us how to be honest. It taught us how to love in

spite of what's at the end of the tunnel. How to be a little bit more

considerate of another person. It showed us how to find spirituality.

It taught me. I can only speak for myself. It taught me how to find my

spirit and how to make my flame You know, it's like the AIDS

epidemic is not over. I still have friends who are living with HIV.

Every once in a while, someone I know becomes infected. I mean, it

continues. What has stopped continuing, at least in San

Francisco and in most of the developed world, is the vast amount

I would really like to be able to live long enough to know how does

the epidemic actually come to an end. Like will the treatments come

and finally and effectively stop people from becoming sicker? And

will the vaccine come and stop people from being able to transmit

and acquire it? And will it all You know, when people say how did

you get through it, I don't know. You know, you just do, and

everybody does. I mean, anybody who's got cancer or AIDS, and

there's like, "Oh, you're so amazing, you've gotten through

this." It's like, do I have a choice? You know, I want to stay

alive and I'm gonna take care of myself the best I can. And you just

do it. And it's not heroic. You just do it. And same thing with

losing a partner. It's, you know, so many, you know... Most people in

the world lose partners, you know, at one time in their lives or

another. And you just... You live through it, and it's horrible, but

I know I have so many friends who died so young. That's... I mean,