INTERVIEW TOPIC LOG

00:01 Introductions 00:42 Early activist influence from parents 01:38 Volunteering at the Edgemont Community Center; becoming more familiar with impoverished communities 05:25 Activism of the 60s; involvement with movements; idealism 08:49 Friend with AIDS, Jeffrey Wayne Davies; early treatment of AIDS complications; palliative care 13:35 Fear in the gay community; no fear for caring for him 15:29 Vulnerability of the LGBTQ community to diseases and stigmatization 19:33 Expressing interest to working at Duke, while still working at Durham County General Hospital; Anthony Adinolfi, Dani Bolognesi, David Durack 21:50 Working at the Durham County DSS, Adult Protective Services; holes in community services for mentally ill people 25:11 Referrals to John Umstead Hospital, sympathy for patients; work at Durham County General neurology and neurosurgery; difficult advocacy work 30:07 Reactions from others about working in Duke AIDS clinic; doing work for nurses who were afraid at Durham County General Hospital 32:32 Early negative reputation of John Bartlett’s HIV/AIDS clinic 35:22 Patient reactions to discriminatory comments and slurs 36:35 Navigating stigma with patients; talking openly about sex; combating shame 41:41 Understanding the source of the stigma, lack of sympathy for HIV/AIDS patients 42:48 Mindset among healthcare workers; change in mindset over time 45:50 Comparing previous social work with new position at Duke; wide-reaching responsibility for patients; first North Carolina AIDS Advisory Council in 1988 49:53 The three H’s; first HIV blood test in 1985 51:05 Typical day of work in John Bartlett’s clinic; home care versus hospital care for patients near end-of-life; difficult time working with home health agencies; patient social work assessments in the clinic 58:35 Feeling lucky to be able to advocate for communities that she did not belong to; resistant from religious communities; metaphor about sex work; engagement with drug user community 1:03:18 Going to work feeling like going to war 1:04:44 Persuading community organizations to provide services for HIV/AIDS patients; health departments; Four-H youth organizations; anecdote about speaking in daughter’s second grade class about AIDS 1:12:45 Work always on her mind, always talking about it; friends’ boredom 1:14:13 Changing demographics of HIV/AIDS in early 1990s; resistance from black women; going anywhere that she needed to go, even unsafe places 1:19:29 Comfort and confidence in herself for building trust with HIV/AIDS patients 1:21:57 Misunderstandings of patients; astonishing social circumstances; deaf patients; patients who were murderers; patients who were outcasted, rejected, by their parents 1:31:21 Group therapy for the clinic staff 1:33:09 Memorable, admirable moments of John Bartlett and Anthony Adinolfi; cheerleaders for each other 1:36:55 Progress in eliminating stigmas and social barriers for HIV/AIDS; legal clinic in 1990, work with North Carolina Central University’s health education program; lingering stigma towards gay black men; current broken healthcare system 1:44:53 Reflections on career

FULL TRANSCRIPT

Anthony Zhao 0:01 And we are recording. Okay. My name is Anthony Zhao, the date is January 29th, 2024. We're recording in Durham, North Carolina. And today, I'm interviewing Patricia Bartlett for the Agents of Change Oral History Project. Happy to have you here with us. Patricia Bartlett 0:21 Thank you. AZ 0:23 Yeah, so we'll just dive right in. You mentioned when I spoke with you, in the fall, that your mother was hired at one point, by Dr. Stead to be also working in Social Work here at Duke. Did your mother inspire you to follow a similar path with your career? PB 0:42 Yes. I'd like to say that both my parents did. Also, the activism of the period of the 1960s when I started Duke was heavily influential. Mother was quite influential in helping me do volunteer work in the community, especially during the summer, but then during the school year after that, and I worked at Edgemont Community Center, and she was quite supportive of that volunteer work. So there was a combination of the two. But I would say that my relationship with my mother and also her work was definitely [influential]. AZ 1:36 What is the Edgemont Community Center? PB 1:38 So Edgemont Community Center is an area in East Durham that used to be sort of... one side of it is where golden belt is now. There are a lot of shops down there, and then the other side is Edgemont. Now it's getting gentrified, but at the time, it was a very, very poor neighborhood. And they had an active community center there where children could go, and there were classes, things like that. AZ 1:42 So what did you do there as a volunteer? PB 2:19 I was assigned to several young girls who were having difficulties in school. I went to visit them several times a week and worked with reading skills and writing skills, and just generally, sort of hanging out with them, talking to them, and being a friend, AZ 2:50 How old were you at the time? PB 2:52 I was 17. AZ 2:58 Yeah, and then so that was before you're a student here [at Duke]. PB 3:02 That was before I was a student here, I was in secondary school in Massachusetts, but spent the summers [in Durham] and I'm sure my mother wanted me out of the house. It was a great way to get my feet into understanding an impoverished community much better. I really enjoyed my work with the young girls, and I got to know a whole new world of life and poverty. I heard prejudiced feelings about schoolteachers and other people who were perhaps working or trying to educate these young girls, whom they felt were stupid. They were not really willing to see what their background was, or their livelihoods. How could these little girls read first and second grade books to me — and do not very good spelling, but neither did I — how could they do that for me, and not in school? In talking to the teachers, I was able to take away that there was a huge amount of racism and prejudice towards these little girls. AZ 4:41 What was your emotional reaction to that type of prejudice? PB 4:46 Well, at 16 I was really upset. When I was a Duke student, I was less upset. I was more angry and just felt that it was such an unfair world. AZ 5:03 Yeah. Seems like you were pretty connected to the Durham community? That probably grew as you were a student here. Do you think that the time spent connected to this community affected your optimism or determination to be an agent of change, here, later on? PB 5:25 I think, again, I think it was the combination of two things. I think it was the activism of the 60s. I graduated from secondary school in 1967, and came to Duke. You might remember that the sit-in vigil occurred in 1968, that Martin Luther King and Teddy Kennedy, I mean, Robert Kennedy, were assassinated then, that there were marches from Durham and Duke to North Carolina Central and Durham to North Carolina Business School. So all of those things, the takeover of the Allen building, I mean, there were many things that were happening at that time. My volunteering at Edgemont, and just that period of time, were influential. AZ 6:32 Were you involved in any of those student movements in the 60s? PB 6:38 Oh, sure. I was definitely involved. In high school or secondary school, I absolutely believed that I could change all tragedy and sadness and prejudice. Because we were in secondary school, [inaudible], and I came from a privileged background, I believed that I could change all of that. So my optimism was very high. I sat in, I was on the quad during the vigil, and I participated in all of the marches. I was going to say — related to my father and my relationship with Duke — that my father would tell me that I could do anything that I wanted, as long as my photograph wasn't on the front page of the Durham Morning Herald. But my father was probably as active as anyone I know. He was in the history department [at Duke] during all of that period of time and was chair of the department numerous times. His background was coming to Durham and discovering that people wanted him to rent slum housing, or purchase slum housing, so that he could rent it out to poor people. He was horrified about that, and as he grew in his tenure at Duke, he became quite close with North Carolina Central faculty. So I wasn't a stranger to any of this. AZ 8:40 Can you tell me about the friend that you took care of with AIDS in 1981 and 1982? How did you get to know each other? PB 8:49 Sure. His name was Jeffrey Wayne Davies. I met him in theater productions, singing Gilbert and Sullivan operettas at Boston University and Harvard. He and I became very close, for what reasons, I'm not really sure, but this was back in the 70s. We, and a small group of other people, just did pretty much everything together. So, it was very natural, when he became sick, that I go up and try to help. AZ 9:35 Were you involved in theater productions with him? PB 9:38 Yes. AZ 9:38 Oh, I see. PB 9:42 I sang, he sang. He was a very clever Patter baritone — if you know anything about Gilbert and Sullivan — they're the ones that sing very, very, very fast. AZ 9:57 Where was he when he got sick and where were you? PB 10:00 He was in New York. He and a number of my friends moved to New York not long after I left to come back to Durham after I got my master's. He had been in New York, had bought a restaurant and was running the restaurant when he became sick. Actually, he was doing a theater production at the World's Fair in Knoxville, Tennessee, and was doing a Gilbert and Sullivan production when he became very sick. He had to be air flighted back to New York from Knoxville, where he was determined to have GRID, Gay Related Immune Deficiency Syndrome. AZ 10:57 What were you thinking about when you were taking care of him? How did you take care of him? PB 11:04 We had our little our clan of friends who were in New York by this time, and they took care of him during the week, and I would go up on the weekend. Their concern was — just backstepping a second, you have to remember that during this time, there were no AIDS drugs; there weren't even very good drugs to treat the kinds of illnesses that he had. So, [for example,] pentamidine is a drug that, even when I came to Duke, was the only real drug we had to treat Pneumocystis pneumonia. He had Pneumocystis pneumonia, but they didn't know about pentamidine at that time. So basically, what they had to treat him with were IV fluids, IV antibiotics, vitamins, and pain medications. My friends were very concerned with how he should take each one of these tablets, and I was only concerned with his pain. They would take care of them during the week, [while] I would go up on the weekend. He and I would go through all the pain medications he took, and I would figure out how I could just balance one against the other and he could be taking something all the time, so that he was out of pain. I was much more concerned with his pain than I was with him staying alive because there was no treatment. AZ 12:44 Why do you think you were different than your friends within that mindset? PB 12:48 Because they had been warned against making him an addict, a drug addict, and that remained true, until not even long ago with dying patients and their pain management. I just knew that I wanted him to be comfortable, and they were so worried that he would become an addict. They were fixated on it because the doctor warned them about this. AZ 13:27 How did the community around him other than this group of friends react to his illness? PB 13:35 We all were sad. The part of the community that was not gay was — we weren't afraid, none of us were afraid of getting it from him. I know that all of his friends in the gay community, that I knew at least, were terrified because they knew that potentially, they could get it too. Even though we didn't exactly have the connection about men who have sex with men, and there was no test at that point, we knew it had to have something to do with [sex], and the doctors did too. So all the gay men, especially [since] lots of them had had sex with him, were afraid. They also were seeing at that time their friends one after another fall. New York was a big center, as well as California, so— AZ 14:51 How come you guys were not afraid of the disease or afraid of being around him? PB 15:00 I don't know. I don't know. We just weren't. We washed our hands, you know? AZ 15:11 Before aids came, how did you recognize that communities such as the LGBTQ community, like the ones that your friend was part of, were especially vulnerable to stigmatization? PB 15:29 Well, they were especially vulnerable because they were stigmatized. I have to say that, at the time, we weren't using LGBTQ, [or] LGBTQUI. It was pretty much just the gay and lesbian community. We weren't particularly thinking about the trans community just because we weren't as familiar with that, even at the lesbian and gay health project. So in Durham, there was a lesbian and gay health project. They had been here in Durham much longer than the AIDS epidemic actually had. So one of the things that I was aware of, and they were aware of, and the gay community was aware of, was that their likelihood of getting a sexually transmitted infection was much higher than the community at large. They were not terribly worried about it because there were antibiotics for all the sexually transmitted infections. Nevertheless, the community around, always was stigmatized. ["Stigmatized"] is sort of a strong word to use, but making jokes about gay men — not so much about lesbian women because they could sort of fade in — [was more common]. But I would say that I was more aware that if there was something that came along, that was sexually transmitted, that we didn't know about, then that population would be much more likely to become affected. The other thing was that the Durham County bus station, in all those years gone by, was the first place that penicillin-resistant gonorrhea was found at the Durham County Public Health Department. I was very aware because it was a big news item and up to that point, there wasn't penicillin resistance to anything. This was a big issue in the public health field, and my church was next to the Durham County bus station, so it was also a joke that Episcopalians were much more likely to get penicillin-resistant gonorrhea by being next to the bus station. AZ 18:44 I'm curious about this lesbian and gay health project that you just mentioned. Were they mainly focused on providing medical care? Or did they have a social work piece to what they did for the community? PB 19:01 [They mainly did] education, [and provided] resources for the Lesbian-Gay community that they wouldn't ordinarily have. It was primarily an education [and] support place. AZ 19:23 I see. How did you express your interest to Duke that you wanted to work with HIV/AIDS patients? PB 19:33 Well, I had been working at Durham County General [Hospital]. I had gone from the Department of Social Services, where I'd been for four years, to Durham County General, which is now Duke Regional [Hospital]. I had promised my friend Jeffrey [Wayne Davies] that I would always take care of people with AIDS until there was a cure, not realizing that that would be a very long time. The only place I knew nearby [that took care of AIDS patients] was Duke. Duke was doing those first clinical trials, tests, and research. I had a friend who was a nurse in the first clinic, Tony [Anthony] Adinolfi, and he and I were good friends. He suggested that I send my CV to Dani Bolognesi, who at the time was department of surgery, and was garnering NIH grants for the early, mostly lab-related studies of HIV. I sent my CV to him, and he sent my CV to David Durack. David Durack talked to Tony [Anthony] Adinolfi, and they wrote a grant together that they felt was my grant, and then called me in to interview and so they hired me. AZ 21:28 Before we talk more about what happened when you started working in the clinic, could you please briefly just go over your work at the Department of Social Services, and also at Durham County Regional [Hospital] before you came to Duke? What kind of things did you learn while you were working there? PB 21:50 Sure. When I did my field placement in the year after I got my masters in Boston, I worked in the South End. I worked with senior citizens there, but I was a community worker, and I loved working in the community. There was nothing more fun to me than visiting people in their homes, and learning about where people had come from — and especially with senior citizens, in those years down in the South End, it was really fascinating. So when I came back to Durham, I applied for a position at Durham County DSS [Department of Social Services] that was with Adult Protective Services, which meant that the people that I'd be working with were either a danger to themselves or to others. I was working with a population of mostly younger, mentally ill people who had been released back into the community, but weren't really prepared for being there. The other population in adult protective services were older people who were unsafe in their homes, but didn't want to go willingly to a facility of any kind. So I worked with the older people in desperately trying to find family or get them into facilities where they would be safe. With the younger people, it was just learning, more than anything else, about the holes in the community services. That hole in community services, [in the] Department of Social Services, was with mentally ill people who had been released to the community with nowhere to go, with no community services there for them. So I would find representative payees for them who would keep their checks, pay their bills, and give them a certain amount of money each week, which made them very upset. They didn't understand why they couldn't have their whole check. They might have been mentally ill, but they knew that somebody else was getting their check. Then, the things that I had to do were to prevent them from harming, for instance, the person who ran their boarding school, or — because they would get angry so easily — just trying to find community friends for these folks. What I wound up doing a lot of was committing people to John Umstead [Hospital], and going to pick them up, because they would be released from John Umstead [Hospital], with no transportation back to the community — AZ 25:10 What is John Umstead? PB 25:11 John Umstead Hospital. It's still a state facility for people with mental illnesses, but it's primarily the Federal Correctional Facility out in Butner, North Carolina. We used to call it Camp Butner overnight facility for mentally— AZ 25:44 When you say Camp Butner, I've heard of that. PB 25:46 Yeah. So that was at DSS, and it was really important for me because I got to see how a person who could be very much like me, and very close to my age, could have, whatever it was, that just tipped them over the edge, whether it was poor family relationships, whether it was struggling at school, whatever happened, that could be the thing that tipped them over into mental illness. It was like looking at myself sometimes. When I moved to Durham County General Hospital, which is now Duke Regional Hospital, I was hired into the neurology/neurosurgery floor. My job there was to help find placements for people who had head trauma or strokes, automobile accidents, neurology, because neurological diseases usually aren't good. Most of the time, they wind up with needing further services. I learned about what it was like to have young people who had such severe head trauma that they were not going to be able to function independently. It just happened that at the time, no one wanted my patients in nursing home facilities or even rehab facilities, because the likelihood of improvement wasn't very good, and there were not many insurances, or even Medicare, that would pay for a long period of time for them to be in any kind of facility. People always want good stories about people in rehab, as opposed to well, "this person advanced to being able to wave a finger" or, "this person had advanced to being able to look to make eye contact" or something like that. So, I got pretty used to [hearing], "Oh, no, it's Patricia on the phone again." But I enjoyed it a lot. I enjoyed working with the families of all of my head trauma patients and brain tumor patients and learned a lot medically about what was going on with them. My whole experience at Durham County [General Hospital] was good in that way because I learned so much about the medical field and different diseases. I had the community-based work on the one hand and then I went to an inpatient facility. DSS was not a health facility, and Durham Regional was but it was all inpatient, and then at Duke, it was almost all outpatient, so [it was] fun. AZ 29:55 So now we'll move on to talking about your time at Duke. When were you first invited to join or hired, what was the reaction of the people in your life at the time? PB 30:07 No one was surprised. I had made it very clear. When Jeffrey was sick and died, that my goal was to get to a place where I could work with HIV-infected people, and when the first HIV-infected people came into Durham County General [Hospital], they called me to come and go to see to see these people, all of them were men, at the time very young men, who had sex with men. The nurses were afraid, the housekeeping staff [were afraid], the food delivery staff [were afraid], so I was doing a combination of things: I would be holding an IV, while the nurses were trying to get it in, and when they got scared, I would say, "just tell me what to do, and I'll do it." I would get the [meal] trays and take them in, I would feed the patients. I talked to the families, if there were any families, I would make sure that the patients knew that I was there for them, and that I didn't think they were a horrible person. It was very clear at Durham County [General Hospital] that this was going to be what I wanted to do. So when I was offered the job, nobody was surprised. My parents weren't surprised; I think probably my friends were bored with my talk of wanting to go into the, into a clinic [to work with HIV patients] so that nobody was surprised. They really supported me; I'd had nobody [who] warned me against it. I think everybody was extremely supportive. AZ 32:18 When you first joined Dr. Bartlett, what was the reputation of that clinic among other parts of the Duke Health System? PB 32:32 Horrible! It wasn't the reputation of the clinic. The clinic was a tiny little group of people who wanted to work there enough that they applied to work there. But the rest of the hospital was horrible. With the exception of Dirk Iglehart in surgery in Onye [Onyekwere] Akwari in surgery, nobody would operate on a patient with AIDS. Nobody in radiology would take them in for X-rays, willingly. They were loathed to do it. Nobody wanted to put IVs into patients with AIDS: just trying to get a port into one of our patients was an act of God, to the point where our blood drawer who wasn't a fully registered or licensed phlebotomist would actually do it many times herself because we couldn't get anybody to. It's hard to describe. People would walk by our door and make horrible comments about us and the people who came [and] they saw coming in— AZ 34:08 What are some of the things that they would say? PB 34:10 Well, they would call any woman that walked in they call a slut. A cunt. I mean, you couldn't imagine the things we heard when we escorted somebody in. For our gay men, it would be, "sissy," "killer," it was just astonishing. AZ 34:42 How did you react to those comments, in the moment? PB 34:50 You know how John reacted, he would break the phones. [Laughter] He was lucky because he had something to break. I would just turn around and say, "I'm really sorry, you feel this way." Because all of us are humans in the eyes of God and others. I would always say something like, "there but for you go I." [Laughter] AZ 35:22 How would the patients react to those comments? PB 35:26 They seldom were angry. Most of the time they were afraid, ashamed, tearful. They said that it made them realize that their families couldn't find out about [their disease] even more than before, because they might react [the way others in the hospital reacted] towards them. They might believe the same thing that other people were saying about them. Mostly it was being really sad. There were a lot of tears in our clinic. Not from our little staff. We were all pretty mad about it. AZ 36:25 How did you navigate this with the patients? How did you navigate these stigmas that come from not only their family, but also the whole community here? PB 36:35 There were two different types of stigmas. There was the stigma that you could discuss and use the stigma of AIDS. So, for instance, when someone would ask me why I thought that our patients should be treated differently than say, someone with cancer, I would respond that there wasn't stigma towards [cancer patients], and people felt more compassion towards people with cancers or other debilitating illnesses, whereas with our patients, it was always that they deserved what they got. With patients themselves, it was working to [try and] demystify in our work in the community. It was just a constant discussion of, "We're all human. We all could have [HIV], and we all could contract HIV. HIV is a disease that doesn't look at race, or wealth, or gender, or class. We're all sexual human beings, and just by being sexual human beings, we're all at risk." That's how we would approach families. Of course, the issue really boiled down to sex. I actually had families who would say, "Oh, thank heavens. My family member has cancer now, so he doesn't have AIDS" or, "Thank heavens, he's sick with this [as opposed to AIDS] because then he's not homosexual anymore." They were always trying to see if there could be some way, in those early days, that child of theirs might not quite be the homosexual that they thought, because things boiled down to sex. Even still, when you look at what's happening in the North Carolina General Assembly [now] and general assemblies all over the United States, where discussing sex is off the table in some parts of the country. It was like that then, and I'm not sure if it's not more so right now. The difference is that we've become much more welcoming and open to LGBT communities in sort of the communities that matter, I would have to say, but at the time it was working with each patient, to try to build back, if possible, a sense of not being ashamed, not feeling so desperately sad about their situation. There never was a way to stop the stigma entirely. AZ 41:07 When you tell me now that the virus doesn't discriminate based on race or class or sexual orientation, it sounds obvious to me. But why do you think that was so hard to understand for people at the time? PB 41:31 I think everybody wanted to feel like they didn't have a chance of getting it because it was so terrible, and anybody who had seen a person dying with HIV just saw how horrible it was: the sores, weight loss, and dementia in very young people. I think that fear was a huge part of it. People did not want to think they had a chance of getting it, and so it was easier to think that it was only with this [LGBTQ, sex workers, injection drug user] population. [They thought] therefore, we should try to get rid of this population or cure people with that illness of being gay or lesbian. AZ 42:33 Do you think that mindset among general community members was different from the health care workers who were also scared in the hospital? PB 42:48 Yes, in those early days, most of the health care workers were afraid they were going to get it themselves from being in the room, [and] having someone cough on them. I think that that was primarily their fear. Certainly, [the patient's] being a gay man was also part of it, because they, for religious reasons, perhaps, looked down on people who were gay. Over time, that really changed with more education in the hospitals and healthcare settings. AZ 43:46 Did you try to persuade these healthcare workers that they shouldn't be scared or that they still needed to take care of your patients? PB 44:01 When I did talks in the community, I felt like demystifying HIV was the most important thing to do. Especially after 1985, I think that we had the tools in place. Sure, you could mask if you were worried about a contagious disease or tuberculosis, but gloving was the easiest, best way to do everything. I never tried to persuade people that they shouldn't glove or mask. I just tried to let them know that I wasn't afraid to touch people. If I hadn't gotten HIV in such a long period of time, I would do by example of touching, and in almost all the talks that we did in the community, we would have someone with HIV, who would be there to talk about their experience, and we would do a lot of touching. AZ 45:25 Did that work? PB 45:29 I think so, for the people who wanted it to work. AZ 45:33 I see. How did the social work that you did with Dr. Bartlett feel different than your previous experiences with social work, especially at the DSS? PB 45:50 Well, again, it was simple. I was doing all outpatient, and I wasn't even working with patients at DSS. At Durham Regional, I was inpatient [and worked with mentally ill patients]. [Duke] was very different in that we didn't have anything. Even getting people on disability, on Supplemental Security, or social security disability was very difficult in HIV, because we didn't have parameters to go by. I was trying to get medications, I was trying to get home health, nursing, I was trying to get rents paid and, sometimes clothes for people who would just wind up coming into our clinic with nothing but scrubs on from when they had been discharged from the hospital. Because we didn't have a lot of parameters, I was building the parameters. I was involved inpatient, I was involved outpatient, and in working with the outpatients, I was the inpatient social worker, because there wasn't one. Then, I was working with the community agencies in order to be able to get services before these folks died. It involved changing the whole way of thinking about illness, because the measurements weren't exactly the same as they had been for other disabling diseases. So I was involved with the first North Carolina AIDS Advisory Council, and I was one of the few people who was coming from their perspective of a clinic. John Bartlett would be an advisor, let's say, but I was on that committee, and at the time, they would not allow a homosexual to sit at the table for this advisory council. I can't explain to you the insanity of those years. But it was true. This was under a Republican Governor Jim [James] Holshouser, and I'm not sure how, other than self-disclosure, they were going to know that these folks were gay, but they weren't allowed at the table. So I was one of the few from a clinic— AZ 49:25 What year was this? PB 49:29 This was 1988. AZ 49:36 Earlier, you mentioned that something changed with how patients were treated in the hospital with gloving and masking in 1985— PB 49:53 That was when the first blood test was accepted to determine HIV in the system. That's how it was, if you remember, for some reason, Haitians, hemophiliacs, and homosexuals: the three H's. For hemophiliacs, this was this test was incredibly important because it showed that this was a blood-borne illness, and that the transfusions that they had been getting, especially whole blood transfusions were very much at risk, and that's why so many hemophiliacs have become HIV infected. AZ 50:53 That makes sense. What did a typical day of work look like for you, at the time? PB 51:05 Well, as you know, I was there for a long period of time, and I had been a social worker for 16 years prior to coming to the clinic. So I wasn't a novice social worker. Plus, my job, and even that first grant that Tony [Anthony] Adinolfi and John Bartlett and David Durack wrote for me to come involved both community agencies and the inpatient. [The grant] was looking at the relative cost and preferences of patients to die at home versus in the hospital. It really behooved me to have as many services as I could garner, outpatient [ones], because most patients wanted to die at home, and that meant that, for me, incorporating the religious community, the public health community, people at the North Carolina level to support services in the community. I can't really say that there would have been a typical day for me, because sometimes I would be going to Raleigh, to sit on the board of two different boards that we had with Health and Human Services. Sometimes I would be speaking to religious groups, and particularly the Episcopal Church and the Presbyterian Church were very much, very supportive of groups of people who were willing to be buddies for people who were living with HIV. [It was] the same thing in the black community. So, I would go to the black community and speak in churches and, with some of the other young people who are coming into the public health department who were mostly African American, we would go anywhere to talk. We also had to get the home health agencies on board, and that was really hard! I think that was harder than anything else I had to do, except when I worked at Durham Regional Hospital, I had formed really close relation relationships with several of the home health agencies. So, I called on my friends and I would say, "Okay, this is what we really need. We need to get infusion at home, and we need to get infusion therapists who are willing to go in at home so that some of the [IV-only] medications that we had, [such as] ganciclovir could get that done at home and not in the hospital. I was able to use the relationships that I had built at Durham Regional [Hospital] and then and then those that I built [later]. It did not hurt that my parents were very active people in the community. I think I have to make that clear. I had a step up from everybody else in our clinic because my parents were so active in the Durham religious, political, and social communities. There were times when it would be, "Oh, Dick Watson's daughter, we know you, of course, you can come in and talk." So, I was welcomed more, and I used that to my advantage as much as possible. I would be doing those things, but what I always tried to do is to check to see who was coming into the clinic, and if it was someone who didn't have good family support, or who was very sick, then I didn't worry about taking the day off, because it was too much to expect people to come back into the clinic just to have a visit with me. I could visit them at home, and I did many times. But I tried to make sure that it wasn't a new patient, for instance. If it was a new patient, then what it looked like, would be that I did a new patient assessment as soon as they came in, because then I could share my information, with the person who drew their blood, with the doctor, who was John Bartlett at the time, or the nurses, or whatever nurse would be planning to evaluate them for enrollment into a study. I had a social work assessment that I had pieced together from lots of other home health or health assessments, and looked at the things that were going to be necessary in order for that person to be able to navigate the system. For instance, if they didn't have any health insurance, which was something that many people, especially young people, [didn't have], if they've been fired from work, or they hadn't started really working, or had been in jail, [or] prison, [or] sex workers who had gained their money from other means, then what I had to do was figure out what was going to be necessary for that person to go through the system. Usually we would find information out, they would find information out, and we would be able to pull it together to be able to serve that person the best we could. AZ 57:58 I have one more question before we will take a break. You talked about how you went in to talk to these various organizations in the community. How did it feel to be advocating for people whose communities you didn't belong with, because most of these HIV/AIDS patients were LGBTQ, or they might have been part of the black community, or a sex worker community? How did you feel to be advocating for them? PB 58:35 Lucky. I love advocacy. I loved advocacy work long before I started working with HIV infected people, and then it was just a privilege to me. AZ 58:54 Were there any times when members of the communities were resentful towards you because you didn't belong to them? PB 59:22 Certainly in some of the religious communities where we went to speak, there would be people who would just speak out and say that I was wrong, or that I was going against the teachings of God, and quote passages from the Old Testament. I think my being very supportive of injecting drug users, sex workers, and people who had been in prison, there's always a natural rejection of people like that. Personally, I had the had the attitude that, "there but for you go I." I oftentimes felt like, in some ways, I, myself, was a sex worker because I was always trying to gain the end. I wanted my patients to get certain things, and I was willing to bend the truth sometimes. The analogy isn't terribly clear with a sex work, but when I think about that people were trying to get what they needed all the time. That's what sex workers were trying to do: get what they needed. I considered myself just a step removed from it. I wasn't trying to get paid, obviously, but what I was trying to do was to get the needs that I felt that my patients needed the end of the day, so I never felt that much out of the community. I also was a child of the 60s and 70s, and so illegal drugs were not that far. My generation at Duke, even, was one year before more students were starting to become addicted to heroin, because it was going from marijuana, to acid, to downers [depressants], and then lastly heroin was very big. So it was a step, in a sense, before needles. That was never anything that I was interested, in fact, [I] was pretty horrified with the idea of it. Lots of my current friends, actually, started using heroin, and some of them were in the classes ahead of me at Duke. Now, heroin, you could get off of easier than other drugs, if you're not absolutely addicted to it. It's not as addicting [as other drugs]. So it was very much a part of the culture that I was in. AZ 1:03:12 That was very interesting. We're going to take a break, he's going to pause the recording. Alright, we're recording. PB 1:03:18 I just want to add one sentence. Never before had I felt that when I work went to work, I went to war. But that's what we used to say: when we went to work, we went to war. Because we had war with other organizations and other places in the hospital. It felt like a war because we had so many people dying. We went to their funerals, and sometimes it almost became so overwhelming going to one funeral, another funeral, another. It really was like seeing so many people die. So many wonderful people die. AZ 1:04:27 Do you have any anecdotes about persuading a community organization that it was okay to provide services for your patients? PB 1:04:44 Yes, I think for the health departments it was that they were already doing infusions at home. If they were doing infusions for people whom they really didn't know what [infectious diseases] they had, wasn't it a better deal for them to know what the person had, to know about gloving and being extra careful with the needles. That was a fairly strongly persuasive thing for the home health agencies. For the religious communities, I would pull things like "welcoming in the stranger," and "what are the two great commandments" and, obviously there was considerably more that was involved with that. For groups like the Four-H [network of youth organizations]—believe it or not, I went in to talk to the Four-H—it was that they didn't need to be afraid of someone with HIV sitting next to them or working on a project together. They could always come up with the extreme example, you can always come up with an extreme example. Teachers did this to me, and one or two [school] principals as well, that "what if you had a child who was playing softball. The ball came, and they fell down running to get the ball. They skinned their hands and their legs and their knees, and they were bleeding. You as the teacher just ran out to help the student and you didn't have time to put gloves on; they were bleeding all over the teacher, and the teacher had cuts big cuts in his or her hands. So the blood got mixed together, and therefore, teachers were at risk." I would go well, I can tell you this, that many is the time that I fell down running to catch a softball, because I was always afraid it was going to hit me in the eye with skinned knees and skinned hands, and I never remember a teacher coming to lay his or her hands on me in any way to help me. So that would be such an outrageous idea that it just would be outside the limit of possibility. It happened all the time, that sort of thing. Depending on what organization it was, I would approach with the idea of not being afraid, and [the idea] that we know this, we know that you don't have to be [afraid], and here are the reasons why. I would go back to the studies that were being done and had been done as time went on, that really showed that this [contact with blood] is the only way that you can get HIV and trying to bring it back to this idea with especially with adults. It would behoove you to start talking about sex education earlier than you're doing it and to talk about sex education [at all], frankly. So that's the way I approached things. It was very it was different with each group. I do remember an anecdote that I will share is that my youngest daughter was in second grade when I was working at the clinic, fairly new. Her teacher invited me to come to talk to the class the second grade class about AIDS. I mean, talk about re-honing your story! What I did was back to this whole thing of being next to somebody in class, [or] having a classmate who had HIV. Certainly we had the pediatric clinic at that point. It wasn't a big clinic, but it was nevertheless still there. One thing that I knew from some of the children who were in that clinic was that children don't keep secrets. Especially at that age, they pretty much blurt everything out. So the likelihood was that if they had even heard that they had this disease, that they would blurt it out to the kids at school, "I wish I didn't have AIDS" or, you know, whatever it was. My idea was to try to make it not so scary, and I thought that I had done an excellent job in talking to the second graders. I had answered all their questions, which were mostly completely random questions. On the way back to the principal's office, the teacher walked with me, and she said to me, "Well, I sure wouldn't sit next to anybody with AIDS. I don't want to get that AIDS from somebody that just flies across the desk." I remember, "Wow," and I tried to talk to her a little bit more. Not only did she repeat what she had, but she was horrible. She was so horrible to my daughter after that I almost moved her to another class. So clearly, I failed with the teacher, and if I had any hopes that the teacher was going to help to demystify this to her students, I was indeed wrong. AZ 1:12:15 When did you feel the most resistance to your beliefs? And your work? PB 1:12:45 Well, I this is odd, but I guess that it was with old friends. It wasn't resistance, it was boredom. They were just tired of me talking about work. But I would get home fairly late, many evenings, and I would be tied up during the weekends, because most of my community activism was on weekends, or in the evening. When people would start talking about what they were doing at work, and they were, and then I would say something, they would be quickly drifting kind of away. So I guess that's kind of a weird way to say resistance, but in my way of thinking, they should have been listening to me more, but in their way of thinking, they were sick of hearing about it. AZ 1:13:55 As the demographics of HIV and AIDS changed in the late 80s or 90s. How did how did the nature of your work change? PB 1:14:13 Well, there was a whole lot more work and focus on injecting drug use with the demographics changing, and prison. It's important to remember that black men in particular are incarcerated at a much higher rate than white men or [other] people are for similar infractions. So, for instance, crack cocaine and cocaine possession, the difference in cocaine amongst white males of which is rampant as we know. Coke and crack [as well]. Black men would be locked up for 15 or 16 years and white men would get off or get a year. So, the percentage of the population of black people incarcerated is, especially black men, is so high in comparison to the white population. It was important for me to be very aware of incarcerated populations. Another area I do have to say of resistance was particularly for black women who became HIV infected from their husbands who had been incarcerated and either had gotten HIV in prison, and yet, the prisons remained in refusing access to condoms among prisoners, because of course, no one in prison has sex. That was the language of the day: we couldn't get condoms into the prisons. Just looking at that population, black women were very angry at me, when I would give talks about needing to wear condoms with your partners, because they couldn't imagine that their husbands with, whom they went to church with, could have HIV, when there were men who had sex with men in the black community, and that they identified differently than being gay. They didn't identify as being gay, and women were very angry that they could possibly become HIV infected, and then who were very angry when they did become HIV infected. It wasn't the time for me to give them the statistics of the numbers of black men who were incarcerated, and the prevalence of HIV in that [prison] community. But that's what we knew and we really had to talk about. As much as it as it would seem that, I'm so white and I was in the black community a lot, that it wouldn't work, but the thing was that as long as I was knowledgeable, [it was okay]. I always worked with my colleagues at the health department in health education, and I volunteered on all the boards. I went anywhere anybody asked me to go, and so a lot of people told me that they didn't even see that I was any different. I was never afraid to go anywhere; that was one thing that DSS taught me. I had to go places at night, I had to go down into parts of Durham that were exceedingly seedy. I don't know what it was. I just figured, if I got killed or something, it would just happen, but I never worried about it. It changed the nature of my work, because I spent a lot more time in the black community, as the disease morphed. AZ 1:19:09 Were you always relatively confident that you could build trust with HIV patients? The ones that you saw in the clinic? PB 1:19:29 To some extent, I think I did feel quite comfortable. I was very comfortable working in the gay community, and I was very comfortable working with families. So because I'd had so many years of experience before, and because I worked in theatre—I did lots of community theater, [so] I was with lots of gay men. Lots and lots of gay men— and because I was involved with the health department so much, I was working with people from vastly different backgrounds. I said yes and no, I realized, I think that for the people who it was difficult to garner trust were the people who had been turned away by so many people, [and] so many places, they walked into our clinic believing that they were going to be treated badly. They had already been treated badly by the medical system, horribly by the medical system. So why would they feel any different about our clinic until they got to know us? That's why, I'm sure John Bartlett talked about it, but that's why we saw people from all over North Carolina, people from the Virgin Islands, people from California and New York, where you would have expected that people already had their own primary care doctors. But they came to us, they heard about us. They heard about us at National HIV meetings, the big activists in New York heard about us. In large part, let's just say that that had to do with John Bartlett, but it also had to do with word of mouth, that people knew they were safe with us. I was a part of that. I was a part of that safety net. AZ 1:21:50 Looking back, were there any times where you misunderstood the social circumstances of your patients? PB 1:21:57 Yes. There, I'll just say that one particular thing sticks out for me. Now, this did not happen very often. In fact, I only know of this particular time. But I did an entire social work assessment on a new patient, and as a result of that assessment, I referred her to our gynecologist, Elizabeth Livingston. Because she said that she had never had a pelvic exam or GYN exam, so I sent her in to see Dr. Livingston, who happened to be in clinic that day and had some space. She was a drag queen, and she sort of took me for a ride. We had a big laugh. I was the subject of great laughter for days to come. But it was an amazing thing. I was often astonished at just how the social circumstances of some of our patients, how horrible they actually were, and to give you another example, a woman who we saw in our clinic came in and took some condoms as she was going out. I congratulated her and said that she'd come a long way, and she said yes, that she knew that she had and she said that she had, I think four condoms with her and that she knew then that she could have unprotected sex 16 times, and then she would have to use the condoms for the last four times because 1 out of 20 chances that you would get HIV. I realized that she was completely illiterate, and that led to a horrible circumstance with her that I didn't realize that I needed to tell her social worker in the pediatric clinic about this experience, because she had a baby. The baby was taken away from her because she was given advice on how to bathe the baby, but was told that it was very important to bathe the baby in warm water. She had put the baby in a big pan on her stove and was essentially boiling the baby. The baby went to the emergency room, this was down in Fayetteville, with third degree burns, and obviously the baby was taken away from her. But that led me to understand better. She didn't have any heat in her house, and so she wanted to make sure that the baby had a warm bath. She was following what she thought were the recommendations of the nurse in the clinic by keeping the baby warm while giving the baby a bath. She didn't have any heat in the house, and this was the way that she was able to get heat: on her gas top stove. So I learned about difficulties that I hadn't really thought about. We had patients who were deaf, not many. But as I talked through the interpreters with these patients, I realized the barriers that were put up for them [for] getting their medications on time, taking their medications every day appropriately, getting their transportation to come back up for clinic appointments. We had to make sure there was always an interpreter, so we needed to look at who was coming to the clinic that day to get that interpreter in time. That was an example. Another example was never to take for granted the way that other people in the clinic felt about other people. We had murderers in our clinic, and I'd worked with murderers in the past, so they weren't necessarily new to me. But they would always tell me in the clinic that they murdered for a good reason and to take a person like that, who had been a murderer, and to see them weeping when young people came into the clinic, [because] they would say, if only God knew about their sins, and this young person's [sins], they would gladly give their life up for that young person. It hadn't really occurred to us how much some of our older patients who had done things like rob, kill, break the law multiple times, or other things that they consider to be bad, that it could be so sad for them. I think that for me, I never realized the limits or the issues that parents could have, and that there were certain things that parents could not cross for their children. There were many parents who couldn't recognize same sex relationships. The stories were true about one of our patients dying, and the parents arriving and changing locks on the door so that the partner couldn't get in and not letting them get back in, or taking the child away, regardless of whether there was a caregiver with them or a circle of friends. That kind of social behavior was so rooted in, I'm not saying southerners, exactly, but maybe people considered their social position being at risk because their son or daughter had HIV and somebody might find out. They couldn't get over it. That was always a surprise; it was a big surprise when these locked doors started happening, but we had it all the time. AZ 1:31:05 What was the reaction from the other members of your team to these circumstances? Did they react to similarly to you, or were they more surprised? PB 1:31:16 I think they were probably more surprised. AZ 1:31:19 And did you guys talk about those things together? PB 1:31:21 Yes, all the time. Initially, we had the psychiatrist who was very interested in having our clinic meet once every two weeks or once a month, I can't exactly remember, to talk about what we had experienced in the past week. That didn't work as well with me as it did [for others]. It seemed the wrong venue. The better venue for us to do that with was, we would sometimes have a Friday afternoon, when we would close the clinic at four, and believe it or not, go out and get beer and snacks, and just sit around and talk. Then, if there were a particularly difficult situation with a particular patient, we would talk about it together. It was the way that we could get through it emotionally. We could [also] find some resolutions. More is better than one in that kind of situation. But most of us didn't have people on the outside that really understood what we were dealing with. AZ 1:32:57 Do you have any particularly memorable moments when you saw another member of your team doing a piece of very important work at the time? PB 1:33:09 Oh, sure. We were each other's cheerleaders. So there would be so many times that I would tell you that John Bartlett did amazing things. Some of the most memorable moments for me were that he is one of the best public speakers I know, and he could give the most stirring talks. He could also give the most fact-based talks. He could do a PowerPoint presentation, and he would know what his next slide was, without having a clue what it was. It was before we even had the fanciness where we could see the presenter slide and where you could see your next slide. We didn't have that stuff. He could just move seamlessly from one to the next. In addition to that, he was a mentor and a guide for all of us, I think, in being understanding and aware and not prejudiced against anyone that I ever knew. He didn't come from the background I did, being with gay men all the time, yet, he was just naturally that way. Then my nurse friend Tony [Anthony] Adinolfi, he was just brilliant at talking to family and friends of our patients. He communicated that warmth easily. I think each one of us in the clinic had strengths, and as new doctors came, some of the doctors were better than others. We had one doctor who was particularly odious to most of our ways of thinking [in the clinic], so there was no mentorship there. But we kind of got around it because the rest of us were so close. But I think the most important thing was we were each other's cheerleader: they were cheering me on, when we were able to celebrate that we either were able to get this person services or whatever that was considered really wonderful. So I think that those times were really great. AZ 1:33:21 This is the this is the last question I have for you. During your time working at Duke, where do you think the most progress was made in eliminating stigmas and social barriers, for HIV and AIDS patients? PB 1:36:55 First of all, I think we've finally eliminated the stigma of our clinic: a lot of people like working in our clinic. To their surprise, we've got a great cadre of doctors working with us now. We are able to work with other specialty areas, and there's not that same kind of stigma that there used to be. So I think that would be the most important. The second is that hospice, public health nurses, and nursing homes, are all taking HIV-infected people now, and that's tremendous. I mean, to me, a great accomplishment since that was a big focus of what I did. We have much better access to Medicaid and Social Security. We started a legal clinic, way back in 1990. We were really actually initially able to get help for our patients, and we had law students who were excited about that, who had never even known an HIV infected person before, but really wanted to work in this legal clinic. The patients were so excited about it. They had their own lawyer, that was their thing: "Oh, my lawyer told me, my lawyer..." Can you imagine that, you know, some years before? We didn't have nearly the services for Substance Abuse Treatment around the state that we do [now]. Unfortunately, Medicare and Medicaid, like everything else, aren't paying for as much of it, especially on the inpatient side, as they used to be, but that doesn't have to do with stigma, it's just has to do with crappy health care in the state. We've developed more cross-cultural work in the institutions around. We have Duke doctors who work with North Carolina Central [University] at their Student Health. We have more respect for Central and UNC as they do with us and Central. I think that's a really important change. Certainly, I can't tell you [how much] has changed in health education. North Carolina Central [University] has a health education department, and for years, the focus of their work would just be more on senior citizens and teaching more about seniors and what senior needs would be, or teaching more about actually what students were doing in the community and primary health issues with them. None of it [was] related to HIV. So, we actually have in the state, a sexologist, who graduated from North Carolina Central in their health education department, and she teaches at North Carolina Central, and she goes all over the state doing safe sex discussions and parties and work. She's very hands-on very adult education oriented. We have people who are working with the state, now, in particular, looking at health education in college, and working in dorms and dorm settings. [They] find ways to text message safe sex messages. This whole idea of health education and adult health literacy working together [was] never focused towards HIV in the past, and now there's a huge part of it that focuses on HIV. All those young people I talked about, who are health education majors at North Carolina Central now have gotten their doctorates and are the leaders. That's an enormous accomplishment, that they're the ones that are really going to be the ones that reduce the stigma. I'm long out of here in doing that, but I feel like I helped to accomplish that. That just really warms the cockles of my soul. I'm sure that there are still the same issues. I think that in the black community, men who have sex with men is still a difficult topic for both parents and friends, you know, the tenor in the choir. That's just not something that they can really get their heads around still. But there are more people who have been advocating in the community and more of the black churches that have become very involved in embracing the population of people of humanity. If I said that there was anything that I think is worse or the same, it's that the healthcare system is broken. It is so hard for specialists to communicate to each other. You've got a person who has HIV, and you're taking care of him. He goes home, [and] he comes into the hospital for something entirely different. Does anybody call their HIV doctor? No. It's happenstance that they find out from another patient coming into the clinic and saying, "Oh, by the way, did you know that James Smith is in the hospital right now? At Duke?" It happens to all of us. It's not just HIV infected people. But I think that that's where things have gotten worse, where I think things are behind. But in terms of stigma, I think that there have been improvements. AZ 1:44:42 That's all the questions that I had for you. Is there anything else that you wanted to still share, before we stop the recording? PB 1:44:53 No, I don't think so. It's been a privilege for me. I never looked back. Not once did I ever look back. I loved working with everybody. I loved my women who, for so many different reasons went into sex work, mostly because they had been abused. You just had to understand where people came from. And, the same thing with incarceration. You looked at how many people were incarcerated for murder, as they said, a good murder is a bad murder, when it was because somebody was beating up somebody else or because their mother killed their stepfather because their stepfather was abusing their mother. I mean, there's lots of reasons, that's the gamut. So I never looked back. I loved everybody I worked with, maybe with the exception of one or two patients. AZ 1:46:09 Thank you for sharing all these stories with us today. PB 1:46:13 Thank you for asking me. AZ 1:46:17 Okay, so before we stop the recording, let's record 15 seconds of room tone. And then afterwards, can you just introduce yourself in a production style? So for me that would be like, my name is Anthony Zhao and I am a second year undergrad at Duke University, your version of that super brief thing. PB 1:47:01 My name is Patricia Bartlett, and I'm a retired clinical social worker. I worked at Duke for over 30 years and retired in 2018.