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Do you want to just give a thumbs up when you're ready? We are rolling. Perfect. So this is the April 11th, 2021 interview of Ron Swanda by Audrey Barnett for the Humanities Truck Community Archive, recorded at American University. Thank you Ron, so much for coming today. Do I have permission to record this interview? You do. Awesome. So would you be able to tell me what your name is and spell it for us?

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I go by Ron, R-O-N, and last name is Swanda, S-W-A-N-D-A. Okay, perfect. And would you be able to tell us a little bit about yourself, just some basic background information. I'm 75. I've lived in DC now for more than 35 years, I'm originally from Nebraska in Omaha and I was in the military after I left Nebraska for about 11 years. Then I moved to DC and I worked for a trade association in DC for the 27 years following that. Thank you so much. What exactly brought you here to DC?

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That job. Most jobs bring you to a new city, that was me. I got out of the Air Force, went to graduate school. I got a master's degree in Business Administration around aviation because that was my background. And then moved here. So, I'm curious. When did you first hear about HIV/AIDS? When I moved to DC in April of 1982. During that time frame, it was really kind of a big mystery and everybody thought of it as something that was happening primarily in New York and San Francisco in the other major cities. This is a major city here, but people didn't think it was impacting us yet. But we always had it under our thoughts that it might and we worried about it. But nobody knew what it was then. It was called a gay cancer at one time, but we did not know and so it was so unknown and how it was transmitted was unknown. So there are so many unknowns that the community in general was pretty ignorant of what the final reality was in those days. So I'm curious then what was a story about HIV/AIDs that had an impact on you and that, you know, first brought you awareness of what was going on.

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Yeah. At the time I moved to DC, I had a lover at the time and so we were living the young gay, male lifestyle, going to beach on the weekends, etc. And amongst the social crowds that we went with, there were a lot of questions but there were no answers. There's a thing called alkyl nitrate, known as poppers in the gay community, people thought, Oh it's poppers, that's what's getting everybody. So don't do poppers. Of course that turned out to be nonsense, but any rate I can remember distinctly going to social events where we had open discussions: What is this, What's going on, How worried should we be, things like that. And then the Washington Blade, which is our local LGBT newspaper, newspaper for the gay community, came out with a series of articles. I read the first article about a guy named Ray Engebretsen. It was astounding to me that there was somebody so open about being infected. It was a great stigma, HIV was so unknown, and people were even afraid to be in the same room with someone with HIV, including hospital workers, There are stories about hospital workers who would not go into rooms to take care of their patients. So that series of articles last about, I think there were 12 different interviews and each one of them documented what was happening to him, what was going through his mind, not only physically and mentally, but spiritually as well. And to me, that was an eye-opening series of articles and I was so glad that they got published the Blade. In fact, I've talked to the person that did the interviews of the time whose name whose name is Lisa Keen, who was at that time the editor, to see if we can somehow capture better for history that series of articles. And then after he died. after the series of articles, about maybe 20 weeks. the Washington Post wrote a long obituary an article about his life noting that he had been so brazen, so brave to disclose some of his social activities. And so that was to me, it was an eye-opener and I think it was to many, many people in DC. We all went, Oh my God, this is what it's like. And not only did they have text, but they had pictures of him before, when he got infected, and right before he died they had some pictures of what he looked like. It was really shocking to people. I think we all knew by that time how serious it was from people we knew in New York, but to have somebody here in DC, I didn't know Ray personally myself but many people did. He was a well-known person, it was kind of shocking.

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Yeah. What were the progression of emotions that you experienced as you read the article? Did you read it week by week or as it came out or all at once? No, I read it week by week, like most people in DC did. It wasn't every week at first, it was every week and then it was every two weeks and then they'd miss a couple weeks. So it was sporadic and the Blade says they got more letters to the editor about that series of articles than anything they've ever got in the history of the Blade. Some of them were very supportive saying, Oh gee I hope you can do well Ray and things like that, but there were a few people that said, Well you get what you deserve, You know, you were sexually active, doing those crazy things, and so that's what you deserve. So don't worry about it. So it was very kind on one hand and was very blunt on the other. As far as I went, I think my eyes opened up further and further as I read each article until he finally died. Of course, I was greatly saddened. And there was quite a bit of support in the community to remember his contribution and to recognize his heroism. I call it heroism for doing that series of articles. Some of his friends who were probably more involved in the sexual side of being gay did not think he was much of a hero because he said all that stuff. But I did. Because they were used to talking about things like that. And many of us went, Oh my goodness, somebody could be that upfront about their sexual activities in their life. That's pretty brave, especially in the light of HIV. Yeah. Would you expand a little bit more on why you choose to call Ray Engebretsen a hero?

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I think he was extremely brave for what he did. Thinking about those times when there was such a stigma, so much unknown in the minds of people, and the social stigma was enormous. For him to just decide to - I think more of the articles quotes him as saying, I have nothing to give back to the community, I don't have any money and my estate will be zero. I have nothing to give, but all I have is my story and so he chose to preserve that story in very great detail and without inhibition. So you mentioned you didn't know Ray personally. Who is a person that you did know personally? Maybe the first person or one of the first few you knew personally who had HIV/AIDS? Yeah. Not related to Ray. When I was in the Air Force, I had some close friends that were also in the Air Force with me and one of them, we were all pilots that time and we all got discharged within a year of each other. One of my friend's names was Mark and he got out of the Air Force and got a boyfriend. Back then the airline industry was sporadically hiring and not hiring and hiring and not hiring. So anyway, he moved to New York and he was diagnosed with HIV, and he said at that time AIDS, even though he had a boyfriend, and so he was still a good friend of mine and I kept up with him. Unfortunately, the really tragic story here was that he was riding in the back of an employee van and going to the airport. The airlines usually provide a van to take the people from the hotel to the airport. He was riding in the back and they had a major accident and he flew forward and hit his head and got some pretty severe head injuries that affected his ability to continue flying.

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So he and his lover went to court to see if there could be settlement. And one of the primary arguments that the opposing lawyers said was, Oh he's got AIDS, he's not going to live very long anyway, we don't have to give him very much money. And that really upset me. And he got rehabilitated quite well, he was able to live quite a few years later, but never flew again. And he did get a settlement from the airline. I'm not sure how much it was, but it wasn't a huge amount of money. And he lived with his boyfriend, or his lover, at the time for quite a few years here and San Diego. So, but he was never quite the same. His personality was changed and he couldn't hardly walk when he first recovered. But after that he got the ability to walk and talking and remember some things, It was gratifying to see that happen. But finally he moved to DC and shortly after he moved to DC, he got very ill. I think it was the stress of moving and I can remember going to visit him in the hospital at GW, at the time of the old hospital, to talk to him and shortly thereafter he died. I was there with his boyfriend, his lover at the time, shortly after he died, to console him. It was not an unexpected death because he'd been sick for quite some time. But nonetheless, quite an emotional time. Yeah. Would you mind telling us a little bit more about that experience. Was it the first person who you were visiting in the hospital? Well, at that that same time when I first moved to DC, I had gotten pretty involved in the Metropolitan Community Church, which is a church here. that is a Christian church, which at that time especially had a lot of LGBT members. And some people call it a gay church but they're not a gay church, they're a Christian church with gay people and that's important to them. I was a member of that church for about 15 to 20 years and on their board. So I was very much involved in that church.

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During that epidemic MCC was the one of the few churches that would hold services for people if they died from AIDS. It was not the only church. There were certainly some other very supportive churches in town, but for people who were not members of those other churches, MCC was often the throwback. So, many of our congregation members had gotten ill and died, and I can remember many times - one funeral that was attended by some members of the leather community and the guy who had died was a member of the community, it was a very important part of his life, and his parents were there. The service was relatively small with bunch of these people dressed up in their leather wear. And after the service the pastor said, you know, "Here's your son's ashes," and they said, Oh we don't want them, you can have them. And I thought that - I don't think it was meant to be - they were there [at the funeral], so I don't think it was meant to be hostile or anything else, but I do think that meant it just didn't matter to them. Fortunately the church had a columbarium to take ashes of people and and remember them. The church still has a columbarium there. It's a great place to visit when I go, I recognize almost all of them. There's probably ashes of 50 people, not interred, but they're on a shelf there with their names and I can remember almost all those those names. So to me it's like going down memory lane. Yeah, thank you for sharing that. So I'd like to backtrack a little bit. You mentioned how you and Mark were diagnosed at the same time or around the same time. Is that true? No. He was diagnosed early on. He got infected in New York and although I had suspected I had been infected sooner, I wasn't actually diagnosed until 1989 and I only got tested in 1989 because there was some drug they could give you. Prior to that, you could get tested for HIV, but there's nothing they could do for you. If you have HIV, you're probably going to die from it. So in 1989, AZT, azidothymidine, came out and it was a very tough drug, probably killed more people that it saved. But nonetheless, I waited until there was something to be done and then I got tested. So in '89 when I did get tested I kind of suspected I would turn out to positive because I'd been around for ten years in the middle of the epidemic.

00:13:15.700 - 00:14:05.820

Yeah, so that was a purposeful decision to make. Many people did that too. Not just me. Yeah, would you mind telling us about the manner in which you did find out and also what some of the emotions that accompanied this discovery were? Yeah. It was kind of shocking because like I said, I expected it to be positive when I went in for the test. You're going in for the blood test, it was at Whitman Walker, which [unintelligible]. At that time there were at a different location and actually at that time, they were mostly a men's VD clinic, so much different than it is now. But nonetheless, you go back for the results and sometimes they just say, Okay you're negative and people walk out, say Hooray. Well, he said, "You're positive." I said, "Well, I suspected that was true."

00:14:05.820 - 00:16:22.900

And at that time there was no emotion, but I think after I returned home, I started thinking it over, what really the implications were, and anytime you diagnosed with something that has - especially then when there were very few medications and the prediction of your life span was pretty poor. So it bothered me that - I think what bothered me the most was that I was now going to be a person that was looked on by the LGBT community, the gay men especially, as someone not to date. And I thought, Gee that's the last time - I had by that time broken up with my lover previously that I mentioned, and so it was tough to think that I would never date anybody again. I've since found out of course that was not true, that there are many people who are also HIV positive that I could date and now there's the drugs, you're non-transmittal if you're on the drugs, Would you mind telling us a little bit more about that stigma or that fear of not being able to date anyone? That desire to have that sort of intimacy with another human being is something that's innate to everybody and pretty fundamental to your being. And as a gay person growing up in the 40s, 50s 60s, that was a thing that was a matter of shame at that time as I was taught, it was a matter of shame. So I finally got over that and started thinking that it was great to be gay and it was okay to be gay, and I can have everything I wanted and meet gay people. And suddenly, the HIV/AIDS crisis came along and kind of put a kibosh on all that. It was a very difficult time and that was before there was any thought of any mitigating medications except AZT and everybody knew how bad that was. I used to go to a special counselor on supplemental food supplications, supplements to do this, do that. And so I became a counselor for many people with HIV. I am curious what resources and healthcare were available to you at the time.

00:16:23.200 - 00:18:41.600

We were lucky to have Whitman Walker here. At the time they had a totally different financial structure but they accommodated the gay community very well, the gay men especially, and we were supported enormously by lesbians. A lot of lesbians were our friends and would care for us in the hospitals. So it was very good to know that we had those sorts of allies. And eventually, this is a large city and very progressive city, even the mainstream medical hospitals, as more and more became known about HIV and how its transmitted, you could get good care from almost anywhere you went, but it was really nice to know you can always go to Whitman Walker and you can talk to a doctor who had special competence in LGBT people. That's great. Did you feel as though there was a community that was fostered via Whitman Walker? You also talk about the lesbian friends you had who were caregivers. Could you expand a little bit more on the connections that you made because of that? The main political advocacy that was going around HIV and AIDS at that time was happening in New York and San Francisco because that's where it kind of centered in when it started. So we were also like that here in DC, but there was not as much direct activism I think at the national level. Those people worried about the national programs for drug development, et cetera, et cetera. So here we devoted our most of our time to making sure that the laws accommodated when you got sick, people could visit you and and they were reasonable according to medical standards. And there were some people here that got very much involved in the political side of HIV here in DC at that time. There are some who are still around. I was not particularly involved in that part. I was mostly involved in the personal, psychosocial parts of it. Not the political parts of it. And of course, that time marriage was banned and that while that had nothing to do with HIV, the fact that we could not establish long-term relationships and could not have a long term care and partner under the law was an important issue.

00:18:43.400 - 00:20:48.900

Why the psychosocial aspects and not political? What was the reasoning behind that? Well my job here in DC was politics. I was a federal airman but not anything to do with health and human services, I worked in aviation - FAA and NTSB and Congress, et cetera. So I didn't particularly want to be acting in that regard at the federal level. I appreciated the fact that were people doing that, but I wanted to get more involved in taking care of the needs of people here that I knew. So I was not even on the political side here in DC on the local laws, I was more in the organizations caring for people. This is a very minority driven community and the minorities were greatly overlooked in the beginning. So a lot of the people I knew, a lot through MCC, which is a very diverse community of worshippers. I got to know them and started to help develop support services for minorities here in DC. Nice. So I'm curious given your work, how would you say availability and access to resources and health care has changed throughout the years, kind of bleeding into current day too? The Affordable Care Act made a big difference for many, many people. Not so much me because I was working at the time, but even after I retired and before I got social security, before I got a Medicare, it made an enormous difference for people. And I think the awareness and understanding of the medical community about the mechanisms of HIV, how it's affected and a lot of research now going on about a cure. It's a very long term thing and the major obstacle there is that HIV seems to hide in reservoirs inside of you, even if you're suppressed. And so, when you try to get a cure, the first thing happens is that reservoir gets activated and it comes back out again. So, that's a very difficult thing.

00:20:48.900 - 00:22:05.820

And the good thing about the work that the people in New York and San Francisco and others did nationally was that they worked with the NIH and other national organizations and started requiring that the communities and families impacted were involved in the decisions about the research. It made an enormous difference on all the AIDS research especially, and it's even true, I got involved in some of them recently, in some of the committees that are involved in research for the cure. And immediately after I retired, when I had some more time on my hands, I got involved in all the services available to people with HIV in the DC government using federal money. Wow, that's really interesting. It's called the Ryan White Planning Council by the way. I would love to delve into that a little bit further but I would like to backtrack slightly as you emphasized your psychosocial relations, and that aspect of your activism. Would you mind telling us about some of the LGBTQ people you met when you came to DC? And also, just when you maybe first felt connected to this community?

00:22:07.000 - 00:24:14.100

It was the first time since I've been in the Air Force for 11 years, right after college. Then I went to graduate school before I came here. So this is really the first time I've really lived in a major city and been an openly gay person, at least partly open. I wasn't open at work particularly. So it was really refreshing. I remember moving to DC and thinking wow, this is a great gay community. I go to these various events and I see all these gay people is really great, feels good. And I look at the Washington Blade at the time, which was letting the only newspaper and I can see advertisements for lawyers and dentists and doctors and every other thing you could need. Isn't that cool, I can get guy get help from LGBT people everywhere. Since then I've learned that it's nice to be able to get that kind of help, but not necessarily from gay people because even non-gay people can give you that kind of help with the same unprejudiced approach with the same skills. So I broadened down my horizons. I don't look for just gay people to give me services; I look at all kinds of people. Did you find when you first arrived that community was like, immediately apparent to you, or did it require some work on your end to know? When I moved to DC, I had been involved in MCC in Florida where I was in graduate school. So when I moved here, I knew it. I knew - I had an introduction to the pastor here. I remember coming up here to look for an apartment after I got my job and he showed me, he told me about the whole city, all gay aspects of it. And I thought I'd stay with him a couple nights a week, him and his boyfriend at the time. So I had an immediate connection to the gay community had no wondering "how do I find a gay bar?" It was like I was at Disneyland. That's awesome. It seem like that connection kind of revolved around MCC. Would you mind telling us a little bit more about what kinds of people were part of that community or just how it served as the focal point for you?

00:24:15.200 - 00:25:44.100

I think in those days there were still many denominations that had policies discouraging LGBT activity. And so MCC was one of the few places that openly welcomed gay people as they did [straight] people, I mean LGBT. And so that's why it was so instrumental to me and why I got involved in the leadership of the church. At the time they were renting space in a another congregation downtown on Sundays to have their worship service and they would have two or three hundred people come to their worship services. Which is good, but unfortunately when you don't own the church and people don't give as much money as when you do own a church. So I felt like we weren't going to ever going to be a real church unless we had a building. And so I became the treasurer of the church and working with pastors and other people on the board, wrote up a logical explanation of why we had to have our own building, our own church. Even though we didn't worry about - The church we were renting from was very open and welcoming, we didn't worry about that. But so, that was why I decided to get involved in moving to another location where we could own the building. And so we bought a townhouse, a small townhouse. A large townhouse, but small for a church, close to where I now live. And we were there - Which is what area?

00:25:44.100 - 00:27:38.380

Oh, Shaw. We were there for about 10 years and became a very prosperous community because we had very low overhead and yet the congregation was very generous. And so consequently later on, we were able to actually purchase some property nearby and build a brand new building there. And still to my knowledge it's the only building in DC that was established, built by the gay community. The other ones have been - Other people have rented out or even bought, but this was owned and designed for the gay community. It's not huge. It only seats about 150 people or 200 people, but it still makes me very happy to see that I had a role in that. That's awesome. I'm really curious what role this church played during the height of the AIDS crisis. Yeah I was like I said, the pastor of the church at the time is Larry Uhrig. He was very well-known in the gay community. In fact, if you read the Washington Post article about Ray Engebretsen, Larry is quoted several times in there about how he felt about Ray and his articles. So there's a great deal of insight there and I can remember the time. There were so many funerals that we could hardly schedule enough time in the church and at that time we didn't have our own church building that we did later on. So it was really a very difficult time especially when people were were ostracized by their church at at time like that, when you need to get that spiritual support and that the churches were - most of them, not all of them were not so forthcoming with that support. Did you share with the church and the congregation your diagnosis? Was that a community in which you are able to confide about things you were struggling with personally?

00:27:40.900 - 00:29:56.000

1989 when I tested positive was kind of late in the series of HIV stuff. A lot had happened up to then. I think by then we'd already bought the church and et cetera and started designing the new church. So I didn't - Although I was open about my status and there are lots of people in the church that have the same side as I did, including the pastor, he later passed away from AIDS. So it was like a home group, it was something that was nothing special to be be HIV-positive back then. I'm not sure it is today, even. But back then it was nice to know that it's not a big deal. I'm curious if there were any other spaces or also potential events that the church hosted or other people that your connection to the LGBTQ community in DC revolved around. I think gay pride here in DC started to blossom during that time frame. And undoubtedly, I can remember being in one of the early gay prides, not the first because I wasn't here in DC then, but it was probably the third or fourth, at a very small little park over by P Street beach. And any rate, I think that the gelling around that event, what turned out to be something very big in DC. And all the organizations got involved, it was very big. Unfortunately there are some people that missed the representation from the minority groups. And so there have been some - now we have a gay pride for just about every minority group you can think of. And while they tried to get it all under one umbrella for the big pride celebrations, there's still these. We have the big pride celebration, except for COVID, of course. And we have also these other pride celebrations. So we have so many events and also the development of what's called the DC Center for the LGBT Community, which we're on the, I think, the third or fourth generation, What I mean by that is trying to start up several times, ran out of money, got bad leadership, whatever it was. It has survived for more than 10 years now, and to have our own gay community center in DC is a big deal.

00:29:57.200 - 00:31:35.900

Do you remember any specific events that had a really big impact on you? Events similar to what you just described? I can remember going to the NGLTF, National Gay and Lesbian Task Force, I think they've changed their name now, an event that - I was intimately involved in the gay community and was well aware of the terminology and how people describe themselves. I never really heard a transgender person talk about their life and I can remember going to a large NGLTF conference with a good friend of mine and sitting in the audience and just being totally torn by hearing the trouble that they've gone through. And although I think I had the connections and passion for their issues then, I've got come to realize that transgender people are probably the most, have the most difficult journey of all of us. And so, I've always related when I talk about a difficult Journey or the problems I've had, I keep them in perspective by thinking what would happen to a transgender person. Many of the opportunities that would be lost that I had, the advantages I've had, they would not, so I think that was a major event for me, hearing that person talk. I was sitting in the middle of an audience of 3,000 people in a big, huge, ballroom at the conference in some city away from here. So, that is a major event for me in my evolution as a gay person. Yeah. You mentioned feeling torn, would you be able to expand on what exactly you mean by that?

00:31:36.200 - 00:32:29.800

What context did I say that? How you were in the audience at this conference and you were feeling torn. Torn is not a good word, if I used that. I think I was feeling - I understood intellectually what transgender was all about, but I didn't really understand the difficulties a transgender person might encounter and that person expressed it very well. And that's what I got. I got educated. More than torn. I got educated. Thank you for the clarification. On that issue actually, DC is a city known for its racial segregation and also class inequality, I'm curious if this is how you've experienced DC. On that subject of intersectionality, if that's factored in a lot to your communities here.

00:32:30.100 - 00:34:56.190

Absolutely, I value diversity, any kind of diversity and I've always valued the fact that DC has a large African-American population. A lot of my people, my friends came from that community. MCC is probably - Well, a lot of them were in MCC, so I started there but I got to know more. When you live long enough, you get to know lots of people. And so it's always been my joy to go into rooms and look around and realize that there's a very diverse audience there. It's always my disappointment when I go into the room and lots of white female faces. And unfortunately, it happens a lot of the times when I go to meetings nowadays about the social workers and nurses that are taking care of people. They're all very educated, very accepting of LGBT, but that community is not very diverse. Yeah, would you expand a little bit? Just specifically in the role of care workers or what did you mean exactly? So, care workers or social workers in DC, that's my experience. Because after I retired, I started getting more involved in the senior community, not just LGBT seniors, but all seniors, I was on like DC Commission on Aging for six or eight years. I'd come to understand all the things the city does to support seniors here. And one thing I noted in all of this, even though there are some really great services in some parts of our city, there's nothing for LGBT people. and I got to know some other people around the country that came from larger cities and their cities have pretty good programs, and I couldn't understand why DC could come to that as well. And so I started taking the research that I got from the Gerontological Society of America that I always go to and using that research as the basis for advocacy here in DC. And I'm happy to say that me and a lot of other people doing that finally resulted in about 3, 4 years ago now. And it got some funding for DC government to do some programming for LGBT people. Senior LGBT people. So, was your point that on a lot of the people within those spaces or having these types of conversations, there's not a lot of diversity in those conversations? Or what exactly did you mean?

00:34:56.190 - 00:37:12.000

The lack of diversity is superficial. When you look around the room it looks like a bunch of white women and I say, oh my God, but I know a lot of those people now. I've come to know them, I know they're all very accepting and open and very service oriented and very culturally competent or sensitive. So, I've come to know that that's a superficial misjudgment on my part, if I walk in and say that, oh gosh, there's no different minorities here, LGBT included, very few LGBT people. But there might be very few minorities racially too depending on the organizations. But I've learned that it's superficial. DC is such a wonderful city. I've come to appreciate it even more than I used to, because I've gotten more involved in the government side of things, seeing how they train people. And their hearts are in the right place. Okay. Yeah, thank you for sharing that. That's really interesting to know. I am curious also specifically, with the gay community in DC, do you think that it has come together across those racial and class boundaries? If so, when and how did that occur? No I don't think it's come together. I think it grew up as being more legally if not traditionally segregated. Many Black people want to go to Black bars. And many white people want to go to white bars and they're not officially that way, this is the way they grew up. There was a private club in DC that was by membership only, that was for not all Black people but primarily Black people. And there's an organization called Black and White Men Together, organizations that appreciate the need to have people that are in a bi-racial couple to be able to talk to other people also in that situation. And I don't mean just Black and white, it also could be Asian for instance. So I think - Now with COVID and the lack of gay bars and my getting older, I'm just not sure I'm connected with that scene anymore. I think it's kind of that the scene has kind of gone away or almost gone away and even if it was here, I'm not sure I could tell you much about it.

00:37:12.000 - 00:39:07.060

Yeah, so I'm curious then how demographics of your community at MCC differed from your more social scene. Although, of course MCC was social as well, but I'm thinking especially bars, as you just mentioned, was there a difference in the demographics? Back - I'm not longer a member of MCC by the way, my faith has evolved. But nonetheless, when I was a member at MCC, most of the activities I was involved in were not bar-related, they were social activities at people's houses, or if it was at a bar, it was more like a restaurant that was also in a bar, to have dinner and talk. A lot of people did the bars, but bars were always very integrated here, since I've lived here anyway. There's no reason they can't - Any people of any race can go in or even gender can go in. Although, you may feel pretty uncomfortable in some of the bars that used to be here, women might, but they still could come in. Oh interesting. So did you know that women were excluded somewhat from those social scenes? By choice, by choice, you know. People like to be around people who are like them, whatever you want to measure. So, women like to be around women and men like to be around men, that doesn't mean they don't like them. In many cases they may have strong preferences but, you know, I was looking for sexual hookups either. And the sexual nature of men is very different than women and so women tended to have their own social activities including bars. And those were the first to fall by the wayside here in DC, in piece because I think the women in DC seems to be smaller than the male population of LGBT people.

00:39:09.200 - 00:40:22.400

So you are describing the phenomenon where there was some segregation within social spaces for LGBTQ people. How would you say your community at MCC differed from that or potentially overlapped? Segregation is a pretty hard word, you know, I think voluntary separation would be a better way to say it. And MCC's always been very diverse always been very diverse more so than most other churches or organizations in this city. What would you say was the reason for about - how was it able to draw such a diverse population? I can speak to MCC specifically. I think the style of worship and whole kind of church attitude that MCC has adopted here reflects very much the experiences of African Americans growing up in a church. So they could go to MCC and it was very open to gay people but they found the sound of worship, the hymns, the pastor's messages were the kind of things they used to hear when they were a kid growing up an African-American church before the church threw them out, and then they had to move to another church.

00:40:24.700 - 00:42:37.500

So you also mentioned how you're no longer part of that community. I'm really curious how your ties and relationships with LGBTQ people in DC has changed over time. I think as I mentioned to you, I used to think, Oh, this is great. I can get a gay everything here. And I've gradually begun to understand that it's probably even better to get that same sort of support sport as a gay person from non-gay people. Here in DC it's so easy to do that. I came to value probably even more than having a gay dentist, I just value the fact that a dentist - I could be openly gay and no big deal about being gay. But as far as, well that's good. Again, I'm really intrigued by care of work and specifically - So I'm really curious if you have ever had a caregiver or if you know anyone who's ever received care for HIV/AIDS. I know lots of people that had care, varying degrees of it. And in fact the Ryan White Planning Council is the agency that doles out the federal money to help take care of LGBT people, mainly gay men. It's a sizable community of women too. So we used a part of our job as the Planning Council, and I used to be on the analysis part of it, so you can have data to back up what you wanted to do, which was to see what the needs were, needs assessment. And so I was very intimately involved in surveys of the whole HIV community in DC to find out what their needs were, anywhere from food to medications to social services, housing, a whole smorgasbord of services that were required. And for lower-income people, people basically qualifying for Medicaid, which meant the government would pay for it.

00:42:38.700 - 00:43:44.200

Yeah, so I'm curious because you mentioned your friend Mark, and it seems as though he - Was his partner his caregiver or he had some - Yeah, his partner was his caregiver. Do you know, then how these people felt about their caregivers or what their relationship were like? His lover was his caregiver, so I mean it was - Many of the people I know that have a caregiver, it's their lover, long term lover. Just like any long-term relationship, straight or gay, their primary caregivers turn out to be their partner, I would call it a partner more than lover. But I know of other situations, since now we have legal marriage but we didn't for a long time. Matter of fact, I never considered it as an option to be in a long-term relationship and call it marriage. So I when I think about what I need from a caregiver, I need somebody that's a close friend and I can trust, my chosen family to be my caregiver.

00:43:44.700 - 00:44:54.380

Yeah. How would you say being someone's caregiver? I don't know if you have direct experiences with this, but maybe you can draw from what you've witnessed happening with friends. How does being someone's caregiver impact that relationship between the two people? Well, that's pretty tricky. There are social scientists that do major PhD theses on that question. And I'm not sure if I can answer it very easily, but ti's very tricky situation and each one is different I think, because the dynamics change totally. Especially if it's memory-related, the person that you used to know 20 years ago without memory problems can be totally gone mentally but fully there physically, and so there are many many issues that come up for caregivers. Fortunately, I think that's being recognized by the whole community, not just the LGBT community. So there are a lot of resources for taking care of the caregiver. We used to have a lot of resources on how to take care of somebody. Now, we have resources for taking care of the caregiver. That's something that's changed then? Yes, I think, in the last five years, especially AARP has a tremendous amount of resources now on caregiving.

00:44:56.300 - 00:46:41.880

I feel like that's incredibly important. So it's kind of it's nice to hear about that has changed. I'm curious if maybe you could comment on like, Mark and his relationship because I'm sure - Mark and then his relationship with his partner and caregiver and how that relationship evolved as the disease got worse. I'm not sure how close you were, but maybe you could elaborate a little bit on your relationship with the two of them. I knew Mark pretty well. In the beginning, they moved to San Francisco, I mean San Diego, and I got kind of distanced from their day-to-day activities. Then when they moved to DC, he died shortly after that. That particular relationship, however, they stayed together until the end. Tt was very intense physically and emotionally. Did you have quite a few friends and a couple friends who kind of assumed that type of relationship when someone was diagnosed and started to deteriorate with the disease? Was that something you noticed a lot? I think I know more people that don't have a caregiver, had to find somebody. I knew somebody, their partner became their caregiver. Because not many of us had partners that have that nature. So most of us had to find somebody to do that like that for us. I think it's changing the younger you get, but when you're an older person like me, you don't have that built-in caregiving in your house. There's always exceptions of course, I know people on both sides of that. I also know people, their partner found out they were HIV and deserted them. There was that kind of partnership, I guess.

00:46:44.600 - 00:46:59.860

Would you then elaborate a little bit more of that process of finding a caregiver? It seems as though you said there's more people who had to go about it that way versus having an automatic caregiver. That's probably one of the biggest