(soft music) (soft music continues) (soft music continues) - I actually reread my journal from that time and it was 11 people who died in that week.

- That was one year, in December of that year, we buried 13.

- Went through 52 deaths.

(weeps) Can we stop this for a second?

- [Director] Sure.

- They didn't wanna acknowledge it and so people died, and a lot of us didn't get to say goodbye.

- We knew people hated us, but we didn't think they hated us that much to let us die in really, really, really awful ways, really awful ways.

(soft music continues) (soft music continues) (gentle music) - I had been following the emergence of it in "The Advocate" and reading articles about there's this thing where gay men seem to be getting this really rare cancer and there's this whole, like, cluster of diseases.

So they're calling it gay-related.

It's really pretty much clustered on the East Coast, a little now on the West Coast and in Chicago and Miami and hemophiliacs are getting it and Haitians and, you know, it's like the joke at the time.

What's the hardest part about having AIDS?

Telling your parents that you're Haitian?

- I had heard about it when it started appearing in things like "Newsweek" and "Time Magazine," but at that time it was called the Gay Pneumonia or some such euphemism for it.

- [Participant] The first reports of AIDS in Kansas City was 1982, late 1982.

- A friend of mine who was in Wichita, she was talking about having seen this patient.

"I think it's that new stuff they're calling ARC, AIDS-related complex."

And I said, "Ah, you know, that's such a zebra.

I'm sure I'll never see it."

- There were many skeptics in our metropolitan area that HIV would ever come to Kansas City.

- The head of the health department continually said, "AIDS will never be a problem in Kansas City."

Because we didn't have a lot of infections that were diagnosed and reported in Kansas City because people with HIV were coming home and they were coming home at that time to die because there was no treatment.

- It galvanized the community very quickly and we all thought we were gonna die.

(gentle music continues) - My boyfriend at the time was an older man and he was very protective of me and was rather jaded.

And the way that he talked about AIDS was entwined with his sort of moral judgment of the friends of his who he knew who were suffering with this illness.

'Cause they were all whores or they were drug users.

- The volume was never similar to what it was, of course, in big cities like New York or San Francisco or Los Angeles.

But the fear and the concern was just as great here.

- Everybody at the Liberty Memorial back then, everybody knew everybody.

You know, you knew everybody and their car and you knew who had the best music and who was the best dressed and who had the best hair.

Of course, you had to have hair.

And we had friends that would wear, you know, short shorts and fluffy pumps up there all the time.

So you had people that everyone knew.

So watching this circle kind of disappear was kind of hard and that's when you kind of knew that it was really happening.

(soft music) - Well, I didn't think there was any way that the Midwest would be spared and perhaps a tiny bit fortunate that we had a little bit of time to gear up for it.

And a little bit fortunate that we knew a little bit about the disease before it got here, rather than the initial introduction in San Francisco where really didn't have any idea why, where, who, and so on and so forth.

- I saw a patient in the office and it was very clear to me what was going on.

So as soon as he left, I got on the phone and called an infectious disease doctor that was one of my mentors and I thought would help me out here.

And he said, "Ah, Sharon, there's not much to be done anyway.

You can hold his hand as well as I can."

I knew that I wanted to take care of people that fall through the cracks.

My heart was in caring for people that don't have insurance and that don't have resources.

Most of the time what was happening is folks would be getting sicker and sicker and then at some point they would lose their job, so they would automatically lose their health insurance.

And so those are the folks that made their way to us and most of those patients died.

Our initial life expectancy when people came in, and we diagnosed 'em with AIDS, was six months.

(soft music) - I was hooked with the science and the uncertainty and the fact that this was an emerging disease.

I'd gone through a life-changing event and made a lot of decisions as a result of that, and one of them was I was no longer going to be a semi-closeted lesbian.

It was time for me to take care of my own in a way.

And at that time it was a very small clinic.

The providers were all volunteers, you know.

So I really felt awful that we had to, at the worst moment up to that point of a patient's journey with HIV, when they were told that they had AIDS, that then we had to say, "We're gonna help you, but now you have to establish care somewhere else."

- It was a different time.

It was very different.

A lot of the people that were dying of HIV had families that maybe they were estranged from, so they didn't necessarily want the family members to know what was going on in their lives.

I was asked to come see a patient at home and when I got there, the person that I was talking to didn't seem to be in any hurry.

And so finally I said, "Did you want me to see someone?"

And they took me around the corner, and around the corner was a bed set up in the dining room.

It was very obvious that the fellow had passed.

And when I said, "You know, well he's already gone.

How long has this been?"

They said, "Well, when I came down this morning he was gone."

And I said, "Well, you've been here alone all day?"

"Oh no, I had friends over.

A lot of friends were here.

In fact, the friends were the ones who told me to call you and, you know, but the friends didn't wanna stick around while you came.

Does it look like a natural death?"

"Yes, this sure looks like AIDS."

And they'd say, "But he was never tested.

We don't know that."

- At the time the stigma associated with HIV was so prevalent.

People were being fired from jobs, kicked out of their homes, being disowned by families.

And so the fear of testing and having your name reported, because there was also this fear of what would the government do with your name.

But the state determined that there would be three anonymous test sites in the whole state.

There was one in St. Louis, one in Kansas City, and one in Springfield.

And so having an anonymous test site was really important because there was no way to try to contain the epidemic without people who were positive knowing that they were positive and taking steps not to spread it.

- I knew that we were seeing a lot of HIV and I knew that there were other people in town that were seeing some and it was such a new disease and we had so little information about it, I felt like we should do some sharing.

- The Kansas City AIDS Research Consortium is one that's about nine weeks old now.

It's a conglomeration of all of the practitioners in town that take care of HIV patients that come for therapy.

The advantage that the Kansas City Research Consortium has is that all of the physicians or healthcare providers that are interested in this disease, it allows us to get together to understand the problems that we have in Kansas City.

It allows us to hopefully design protocols and come out with research that will be specific for Kansas City.

And it allows the practitioners of the city to get alternative therapies for the patients of Kansas City that need alternative therapies.

- One of the things I will always feel good about, and proud of, is how all the practitioners from the major institutions and medical schools within our metropolitan area came together, put the politics aside, at least for a while, put the politics aside and, you know, pursued the goal of being patient-centered.

That the patient was what mattered.

- The joy for me came from seeing people be able to die easier.

(gentle music) So whatever we could do to support that.

- The grief of people you know dying and the fear that you're gonna get it and you're gonna die.

That's your daily existence.

- And, in fact, I'd been to so many funerals that I had a jacket that I've worn to all of them on which I just collected all of the little red ribbons and I had, like, six of them on there.

And I started just cutting up any red fabric and cut up a red T-shirt to make a really huge one to say, "Goddamn it, do something about this."

- It just felt like this thing hit and there was no hope on the forefront.

It was a scary time, but it was also a time where people really pulled together and they came together.

- The city responded by setting up an office in '83 and it ran a hotline and it ran some support groups.

What happens is this real tension between organizations trying to respond and what the community sees as its needs.

And so that first response by the city in '83, what we now call the LGBT community, was very suspicious of it because they didn't reach out to anyone in the LGBT community.

The common assumption was all this money's being spent on these bureaucratic responses to the crisis instead of giving money to people who are afflicted.

You know, the President wasn't on the TV every afternoon explaining the latest things the government did to try and manage this issue.

It was all coming from the ground up.

- We were desperate, but we weren't hopeless because without hope there would've been nothing.

And we knew we had a community of brothers and sisters and others, and we had to lean on each other in ways that we had never relied on each other before.

- And there was something that was so important back then.

It was the relationship between the lesbian community and the gay male community.

Without our sisters, we would've died.

Without our sisters, we could not have accomplished as much as we accomplished.

- You know, it was the lesbians taking care of us because if we weren't actually ill, then we were spending so much of our time grieving.

And I say that's smiling because gotta get through it.

- I went to a general conference in 1985 at Sacramento, California, and many of the people that I knew and were friends with from when I had been pastor in San Francisco were not there or were ill, and at that time I realized that what happens there probably would happen here.

And so I personally began investigating and looking into and researching everything there was about AIDS that I could find.

I thought it was just gonna be a matter of me linking up a volunteer with a buddy.

I mean at the beginning, that's about basically what I did.

They were going to visit them at home to make sure that they were eating, drive them to doctor's appointments, to help people get their medication.

Our very, very first client that passed away, his name was Dwayne Wimberly, his buddy was Joe Chanowski.

And Joe took care of him and Dwayne passed away.

So he called his family.

His family wanted nothing to do with him.

And so the church assumed the responsibility 'cause it was our first client and we did not really know what to do.

And we paid for his cremation.

His ashes to this day still remain in the chapel at our church.

We wanted to make sure that he had a resting place where he was loved and he was supported.

What we did not bargain for was that he was the first of many.

And as we started losing clients in the project, it became apparent that we couldn't do it like that anymore.

And so we had to become very, very creative and we wound up with benefactors all over the city.

Basically, The Good Samaritan Project outgrew the church.

It has to do with the Parable of the Good Samaritan.

There were many people who passed by that did nothing for this person who had fallen among thieves.

And it was the Good Samaritan who stopped and took care of that person.

It was one of the gospel stories that our congregation related very, very strongly to to.

And I could not remain as executive director of Good Samaritan Project and as the pastor, and I had to choose.

And it was at that time that I hired Virginia Allen, who was a member of our congregation.

- It was at a board meeting if I remember correctly of the church.

And Tony was on the board and she came home and told me, "By the way, I volunteered you."

"Okay," you know?

So the first day on the job was me doing some research on what do I need to be able to tell people that are volunteering.

And then we talked about what kind of training are we gonna need and who was gonna come do it?

'Cause I knew I couldn't do it.

I didn't have the experience.

- Oddly enough, my best friend in San Francisco that I used to live with, we were roommates, and his partner were very, very active in the San Francisco response.

And they did our first training.

(soft music) - Back then, GSP was, it was the only game in town.

And so it was just a constant flutter of activities.

There was an enormous body of volunteers.

- We'd trained over 1,500 people.

Now not all of them were active, but I'm thinking at least 1,200 were active volunteers.

Some of them were part of the speakers bureau.

Some of 'em were actually allies.

At that time they were called buddies.

And I thought that was kind of not gender neutral.

So I called them allies.

Some of 'em were advocates.

We needed people to, what we used to call sussing, stir up stuff.

You know, if somebody in the hospital, if we got a call from someone who said that the staff at the hospital wouldn't bring their food trays in they'd leave them outside, then we would go to the hospital and we would talk with people and make sure that they knew this is not acceptable.

- The society wasn't particularly welcoming of out gay people, and sick out gay people were particularly unwelcome, especially with this phantom disease.

- I would get phone calls from Kansas, Nebraska, Oklahoma, "We have a person here with AIDS and we don't know what to do with them."

People were so anxious for information and I think that was the key.

Everybody by 1985 had heard of AIDS, they knew it was bad, they knew it wasn't gonna go away, they knew there was no cure, they knew it was a heartbreaking thing, and they were hungry for information.

What can I do?

How can I protect my kids?

How can I protect myself?

How can we just survive this?

- [Participant] Until '89, when you went to the bar every weekend, you tended to see the same people.

It's a small community, right?

They're still around, they're still around, they're still.

You didn't know their names or anything, but you just knew their faces.

And then when you didn't see a face for a while that was cause for concern.

- I haven't seen this person in a while.

Oh, they have AIDS.

Or what happened to?

Oh, he went home and died because he had AIDS.

And it got to be the punchline to the worst joke ever, is that it always ended with, "Oh, he had AIDS, he died."

- Helping a person to just relax and to not be afraid, to assuring them of God's love, and assuring them of God's understanding of who they were.

And in doing that, then I think people were able to pass more serenely.

We also decided that we needed a place where these people who could no longer take care of themselves could go and feel safe and be nurtured.

And so we brainstormed and we came up with the idea of the Good Samaritan House, and that's what we called it.

It was not an ideal situation, but it was better than them sitting by themselves and dying alone.

- The hospice opened while we were through our training and Virginia came up to me and because I said, "There are a lot of things I wanna do, but I don't know really know what."

And she said, "I think the hospice would be a good fit for you."

And I thought, oh, okay.

So I was one of the first volunteers to do the night shift there.

And it was scary, terrifying.

The fact that I was gonna walk into a situation that somebody could die that night and I had no idea what to do.

- We were given to understand that by the time we met folks we were probably going to be helping them to die.

I think it's important for us to remember that the hospice movement was very much in its beginnings at that time.

We were helping to invent that with this work because we didn't have any choice.

They were sick and they were dying.

We had to help them cope with that and escort them toward that.

- I mean, I remember more laughter really than crying and breaking down.

I mean, we did have a kind of a gallows humor.

There was a guy, his name was Jerry Dyer, and he graduated at the Art Institute and he was hilarious.

And then on the day he died, I noticed there was a magic marker next to his bed.

And I thought, oh, Jerry, what have you done?

But I was taking his shirt off and he had drawn a happy face on his stomach.

It's like, oh my God.

I don't want these guys to be forgotten.

And I know the NAMES Project did a beautiful job, but how many thousands and thousands of people did they miss just because nobody cared?

- When someone passes in your presence it's a great gift and you can feel their spirit.

You can feel almost like an electricity in the air, but it's not like your hair stand up on your arms or anything.

It's just a presence.

And I always felt like by sitting with them, you're demonstrating one last small act of love.

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