HIV is not a death sentence. Malachi and Leah are joined by HIV Positive advocates Linda Scruggs and Ken Pettigrew. Our guests recount their experiences being diagnosed with HIV, the effect of stigma, and how culture’s understanding of HIV has aged with them.
Speaker 1: So I don't want folks to think the aging is about this great fifties, sixties. You look, there are folks in this epidemic that're well entered their eighties. I'm the oldest person I know was 92.
Speaker 2: Welcome everyone to Positive Voices. My name is Malachi Stewart. My pronoun preferences are he his, him.
Speaker 1: And
Speaker 3: I'm Leah Henry and my pronouns are she and her.
Speaker 2: And we are really excited and honored to have two guests with us. Our first guest is Linda Scruggs. [00:00:30] She's an advocate speaker, very well known, very well seasoned in the in the game of speaking for H I V. Introduce yourself for us.
Speaker 1: So good morning and thank you Linda h Scruggs. My pronouns are she and her. I am a woman diagnosed with H HIV V here in the Washington metropolitan area. I'd love to tell folks actually I live in District Heights, Maryland and I also am the co-executor director to a ribbon, which is a national H HIV V AIDS chronic disease management education system.
Speaker 2: Awesome. [00:01:00] I told you she got the soul, so I
Speaker 3: Was gonna say she forgot to say fabulous. Okay. Do you
Speaker 2: See the diamonds down?
Speaker 3: Ok. Period.
Speaker 1: I am my mother's daughter.
Speaker 3: Period. Love
Speaker 2: To see you, period. Legacy. Legacy. And I also wanted to introduce a colleague of mine, someone I definitely respect in the game. Kim Petr. Will you introduce, tell a little people a little bit about yourself?
Speaker 4: Sure. Good morning. My name is like Kim Pet. I am from Chicago, but I've been in DC for about 30 years. I'm sorry. I will say that I'm a Washingtonian, whether they let me have it or not. I've been living with HIV V since the beginning [00:01:30] of the century. I mean, I'm sorry, the beginning of 2000. <laugh>. It feels like a century. My pronouns, I like to say I'm available to all, you can call me, whatever, as long as you respect me, period.
Speaker 3: Okay. I'd love to see it. Well, listen, today's episode is about aging and H I v and you all are advocates in your own right. And we wanted to hear from you because I think there's a conversation. The, the tides are turning and information is constantly being
downloaded. And we thought that it was perfect to have you two on today to talk about it. So we like [00:02:00] to ask our guests living with h i, what are their stories? What was that diagnosis day like? And especially because this episode is aging with H HIV v, talk about some of the parallels between, you know, what a diagnosis would look like when you were diagnosed versus today. We'll start with you Linda.
Speaker 1: So I think, oh wow, that's interesting. So I was 25 years old and I was pregnant when I was actually diagnosed. I was 13 weeks pregnant and I had left DC to start a new life. I think I was about three years in drug recovery. So I, I think I'm like 33, 34 years [00:02:30] in drug recovery. So I went to Baltimore to like start a new space and I was, had a wonderful partner at that time and was pregnant and I went and did what women do. I went to prenatal care and a part of my prenatal care was a HIV test. And I was very surprised when they contacted me to come back to the clinic and share with me that I had tested positive for H HIV V. But I was also real mad because at the time I didn't have healthcare. Mm-hmm. <affirmative>. So I was in the other clinic, right?
Speaker 1: So [00:03:00] I was in the other clinic that happens when you don't have healthcare. And I remember like doing the sexual health history mm-hmm. <affirmative>, like telling them all my secrets because I was one that was taught and knowing the doctor asked you tell 'em. So I told 'em about the two rape. I told 'em about molestation. I told 'em about some of the things that I had with men's space and I remember was different. Now, the person who tested me was this wonderful little black woman named Jackie Hamilton. And she was so wonderful. I took the test, right? But when it came time [00:03:30] for my diagnosis, these three white men walked in the room and Jackie had to sit on the stool as the tester and behind them and they shared the diagnosis. And I remember like, who is these white guys? First of all? Like, and like while I'm on this little stool and I'm like, at that time I'm like 250 pounds on this little stool and you're giving me the worst news in the world.
Speaker 1: And the person who shared a why I should consider this was stand sitting in the corner behind you. And so what's different now is [00:04:00] that the community advocated. So Jackie don't sit in the corner anymore. She's the person who engages you. Yeah. And she's the person who gives you the tools on how to manage, you know, it was the day before Thanksgiving and what these three white biased doctors had for me was the option of an abortion that day. Right. So that's very different. The stigma around women, you know, and I'll be real, real around black women living with h, HIV and having babies. Mm-hmm. <affirmative> was very prominent [00:04:30] in 1990. So the difference, again, that's not the option, you know, for you in this sense. So that's some of the paradigm shift they have come along, both with work with learning, but also in the partnership of government health systems and the community advocates itself.
Speaker 1: So like to me, I love telling that that's the paradigm shift of having that experience. I can't talk to what the experience is of a woman diagnosed today. I said this a call last night cuz I don't know if [00:05:00] her experience is any different. Mm-hmm. <affirmative>, because it's not about treatment. It's not about access to care at that moment where we're not giving people life sentences. Where literally I was told that within three years if I choose to have this baby, we both will be dead. That's a death sentence. We don't have to say that anymore. We don't say that. But I still don't know if her experience of hearing those words are any different. Mm-hmm. <affirmative>, I think we haven't, as a nation, as a global nation haven't really addressed how do we look [00:05:30] at H I V as a chronic disease, a blood-based disease that happens. So I'll stop there. That's, but that's really like my initial diagnosis. When I look at today, I think any woman, any man, any non-binary, anyone who receives that diagnosis, the trauma, I don't care how they show up, I don't care if they're sex workers. I don't care if they've had 10 sex partners or if they were like me trying to figure out how to do it on a chandelier. I don't know. That doesn't matter how you did it, but it's not the words that you are prepared for in life.
Speaker 3: [00:06:00] Mm. Wow. Yeah. That's incredible. I, there, there's so many things I want to touch on, but I want to talk to Ken and let him answer the question as
Speaker 4: Well. You know, it's, it's not funny, but when you asked like, do you remember when we first diagnosed? And I immediately went dark. Um, it was a dark space and it's a space that I found myself not going back to. And I don't know if that, I haven't completely healed, but it's, whenever someone asks me that, I just immediately go back. And I remember that dark space, I remember the isolation. [00:06:30] I remember not being able to talk to my family about it. I couldn't talk to my friends about it. Although everybody supposed and suspected I was, because at the time I started getting these funny warts on my forehead, I had lost about 40% of the strength in my legs and I denied it. I just said something wrong. And, and again, I didn't have anyone. And again, this just takes me back to a space of darkness.
Speaker 4: And I think to your point, I don't think that has changed for folks in getting a diagnosis. Although there's medication [00:07:00] that darkness, that isolation, the inability to still tell a parent about your h HIV status. And I have heard a particularly young folks who still can't tell their, their families about their HIV status, still hiding medication. So although things in medication has changed, I do believe that darkness still exists for a lot of folks. There's a hope at the end of that. But the darkness is real. And I'm not sure when you say trauma is trauma and trauma doesn't go away simply cause time passes. I will say that work advocating is a healing and [00:07:30] is a great way to heal, is to immerse yourself in it rather than to deny. And I think that's where I am where I amm today. Cuz I say I'm going to heal through this. I want to, to be able to wear a button, it's says high, I'm gay, I'm, and I'm HIV positive, and I'm baldhead to all the
Speaker 2: <laugh>. And,
Speaker 4: And I can, I can honestly say I, I I feel that way now. I feel that way now. Yeah.
Speaker 3: Yeah.
Speaker 2: That is powerful and a lot for me to digest. Especially because we've talked about in other episodes, even in, when we're tackling the subject of living with HIV [00:08:00] V and I said, and kind of just set it off the cuff and didn't even realize how true it was, but like, I felt really failed in that moment of diagnosis. I felt by myself. I wasn't given the resources, I wasn't, I wasn't given an example. I mean, just what a, what a peer program would've meant. What seeing someone like you two would've meant thriving and living and just the energy of like, yes, I'm here. I look good, <laugh>, I'm laid, and, and this is what it looks like to live, to survive a long time. Going back to, for me, it would be 14 years ago, that [00:08:30] 2008 diagnosis for myself. If I had been in the room with you, if you had been the, the, the tester and counselor, what would you have said to me?
Speaker 3: Mm, that's good.
Speaker 1: Wow. That's deep. So I'll tell you, I always intentionally never was a tester. Okay. So I think my can share was, I think when you understand and you figure out your purpose and you figure out you're getting ready to enter into this space. My entry into H I V was a women's health advocate. I decided I wanted to help women make conscious decisions about having babies. And [00:09:00] I was hired as one of the first peers ever at Johns Hopkins because that was my mission that women should have choice. Right? Like that's no pun intended, like Right, no. Right. That women should have choice. And I didn't wanna be a tester. I don't think giving someone a H I V diagnosis is bad news. I think because of my pregnancy, I didn't have a fair time to process my diagnosis. I went into mother mode, I went into survivor mode.
Speaker 1: I'm a woman who had had abortion before my son. [00:09:30] And I had decided it was, and that wasn't for me. I didn't wanna ever do it again. So I went into a protector mode. So, but training testers, I've always said to them, the one thing I don't like what testers do is when they test someone positive, they tell 'em, you don't have to tell anybody. I think that's projecting stigma from the very beginning. If I was the one testing you, I would've said to you, who can you bring back with you? Yeah. So we can talk about this journey and how to process it. Helping me identify a support system, helping you identify is there [00:10:00] someone and taking you through that process to debunk stigma from the very beginning. Mm-hmm. <affirmative>, I think what I've heard from, unfortunately, my work have given me the opportunity to be in front of thousands of people living with a H I V diagnosis.
Speaker 1: And often we as a provider, STIG de add and validate the stigma by offering a secret by offering. And when you think about many of our experiences, I know for me, I didn't have room for another secret. I already told you some of the things that happened. Yeah. I didn't [00:10:30] have room for another secret. Yeah. So H I v I literally went home that evening and told my partner, I went home very que I just didn't have room for it. I was gonna jump off a bridge. I mean, I, you know, I couldn't wait three years. I was going to die if I had another secret. So I always try to make sure I'm talking to folks. No, if you have room for a secret, hold the secret. But if you don't have room, we have to get people options how to connect recently. And I'll pass it.
Speaker 1: I got a text from [00:11:00] a woman who lived in Miami who had a friend in Texas and said, my friend was diagnosed today, can you get on a seven o'clock zoom? And I thought that was like so huge. Yeah. Like, wow, your friend got that and she called her friend that she got diagnosed and like at seven o'clock there was like 50, 70 people from all over this country on the zoom to meet this woman and her partner. And literally, I mean that's like, that's peer space, right? Yeah. And [00:11:30] there's nothing, any medical, any academia space can't touch the fact that when I show up and I hug you, and I don't know the shoes that you're sitting in, but I know some of that pain. Yeah, yeah. You know, that that pain, that hurting you can't describe. It's like, I don't know if you ever, it's just like if there's this piercing that for many of us, we have an experience of that kind of piercing space that we don't know what that pain is
Speaker 4: About. Yeah. Okay. Well, so if it was 14 years ago [00:12:00] and I was a tester and I was giving you results, um, I, I have been a tester and there's, you just take that energy and there's noth there's no way to avoid it. Giving someone a po a positive diagnosis. You, you just, you I own it. And it's, you have to own it and then release it before you tell that person. But as a test, I will tell you, look at me. And I think that's the great part that I can say, well, you'll, you'll, you'll be fine. It's going to be a journey. One of the things that I tell people is to think about it is important to have, uh, [00:12:30] a, a network or, um, social support. I think I tell people to think strategically. The first thing I say is, do not tell the criers first.
Speaker 4: Cause they gonna make you cry <laugh>. And I said, go to the intellectual person and they're gonna walk you through this intellectually. Yeah. And once you have sort of a knowledge base, then go to those criers and those huggers because the criers and the huggers are great, but you need them after you've throughout thought this through. Yeah. So I would tell you to look at that network and look at the people who are really strong and strategic [00:13:00] and, and can help you think through things. And then you have that foundation to begin that emotional piece that's going to be lingering. But again, you don't start that off with the choir. So I would tell you, look at me, look at the world, look how much things have changed, and then look at your support system. And if you don't have a support system, I can, I can be part of your support system. That's what I would tell you as a
Speaker 3: Tuft. Yeah. That's, that's beautiful. And I think like, yeah, again, y'all's stories are, are truly inspiring. [00:13:30] Totally different perspectives, but amazing. I wanna talk to you guys about stigma because obviously over the years that's changed quite a bit. And then realistically there's still a lot of stigma out there. But at the time of your diagnosis, can you talk about the reactions of the people around you? Were you embraced? Was there any community? Cuz you both centrally keep saying that people who are diagnosed need community and it's such a dark time mm-hmm. <affirmative> so at the time, because we know stigma even just 15 years ago was, was drastically [00:14:00] different. So talk about that when y'all, when it was your time. I'll start with you Ken.
Speaker 4: So I, my definition for stigma is, is what you believe others think about you. Mm. And so when I think about when I first diagnosed and what I thought, I thought other people thought about me. I thought they thought I was dirty. I thought they thought I was nasty. I think there used to be a a a a saying, you got the package and I became one of the persons who got the package. I also got on the list of undesirables. Nobody wants you anymore. [00:14:30] And you know, to add that, you know, we don't come into this with, with a whole lot of self-esteem to begin with sometime. Yes. So now you just layered that on I'm cross eye, I'm short all these things and now you're, now you're living with hiv. And so the stigma is huge and, but I do, I think to some degree it's because of the attitudes we see around us, but I think we take a lot of that on.
Speaker 4: Yeah. So it is true that people have issues and challenges and say the horribles things about people who are living with hiv. But I think a lot [00:15:00] of that is also we've got some work to do with ourselves, right? Because the stigma and how people believe and think about you may never go away. Right? And so how do you then say that's what you think? That's not what I think. And so for me, unpacking stigma from a personal perspective is easier to me to dismantle structural stigma that I, yeah, I, that's a whole lot of work that I don't have time to do, but I do have time to work on myself. So I just encourage people, when you're thinking about what you think people think about them, ask yourself, what do you think about [00:15:30] you? And that doesn't dismantle stigma in how people might treat you, but it gives you a space or a place to start from, if that makes sense. Right.
Speaker 1: I think that, yeah. So the worst stigma, I'm like, yeah, it, it is just such a, it itself is a ugly word. And I think, you know, I was kind of, I, I kind of believe, you know, so I'm a Christian and I kind of believe I was created different. Like, you know, there was a mold that wasn't even formed when I was created. And again, I think because I didn't have room for the secret, I didn't have room [00:16:00] for stigma, you know, I had already addressed stigma in my life. I was fat, I was black, I was a woman, I wasn't well educated. You know, I graduated high school like on the skin of my mother's teeth, like, like not even on the skin of my teeth, right? On the skin of my mother's teeth. Like you got to go through high school. Um, and fighting a lot of other things in life.
Speaker 1: So H I V again was that other thing and I didn't have room for it, you know? So I think when I think about stigma and I think about this disease in 1990, nobody was telling [00:16:30] me that I should have been looking out for this. Right? So my history isn't high promiscuous. And you know, and again, I don't care if you had 10,000 was you yoing, I really don't care how many partners you had <laugh>. No. Did you at least have some yodel space? Right. Yo, so what, you've had 10 partners or some of the people I know have had one partner Yeah. And was diagnosed. I think the stigma really is about how do you manage you and how do you wanna show up? What are you looking for for peace? It costs me more to worry about what other people are [00:17:00] thinking than worry about.
Speaker 1: Like I need to survive. So I think unfortunately, I think there are many other individuals, and particularly I work with a lot of women, a lot of women don't show up in that space. Right. I think that and, and I, if I can be honest, I'm real good at just being telling the truth. You know, before my diagnosis, I was one of those families that talked about the gay guys. I was one of those families that talked about homophobia space and about AIDS and how AIDS was, what was God doing, right? Yeah. Mm-hmm. [00:17:30] <affirmative>. So my stigma had to be addressed to me coming to my own atonement of ni ignorance. Yeah, that's good. Right? Yeah. So I'll be real clear, I was diagnosed in 1990 right? When gay men was dying in the droves mm-hmm. <affirmative>, right? Mm-hmm <affirmative>. I have funeral home family members. Right. Talking about charging them more because they had, I mean I want, I have to be true with self.
Speaker 1: Yeah, yeah. In how I show up, right? Yeah. So me de coming to that atonement that I was part of the harm [00:18:00] of dressing stigma, right? Mm-hmm. <affirmative>. So I had to go through that about me. And what I even found now is when I think about that
person who's being diagnosed today, and I actually had a woman in a training once. She was like, Ms Scrubs, this is all great and I wanna do it, but I can't do this. And she like started squirting tears, right? And never seen tears squirt out. And she said, I'm stigma. And I'm like, what? Like how are you stigma? And she talked about, and this was like 2012 [00:18:30] and she talked about on Facebook blasting somebody else's mother who had aids. She talked about utilizing social media and her friends literally taking flyers and putting it in the apartment complex that this girl mom had AIDS and now she's been diagnosed with hiv.
Speaker 1: Mm-hmm. Right? So she's like, I wanna do this, but I can't. I'm stigma. Right? So I think when we think about how people show up today, it's about some of [00:19:00] what Linda had to do. It's that self atonement. Yeah. Yeah. What did you say? What did you do? What did you think? Could you think the church would do that? Because you been in a church talking When I went to my church within six months of my diagnosis, I'll never forget my bishop. Like, and I was one of those bold people. I'm like, you like maybe you not. So I like before the whole congregation or after Sunday morning, and I remember my bishop coming down and standing between me and a church and saying, nobody's allowed to touch her. Nobody's allowed to do [00:19:30] harm to her. Okay. To that kind of touch me. Right. Cause people in the church touch.
Speaker 1: Yeah. Yeah. Right. So, but I knew that, and you talk about picking your community, I knew that would be my bishop's response that same day. Three other people came to me and one of 'em had this son dying in their living room, but they had never went to the church. Right. The same thing we have to look at how do we show up in the stigma conversation. Mm-hmm. <affirmative>, you know, so whether you are living in the south and there's a different level of systematic oppression [00:20:00] that goes along with someone who's living in Birmingham. If you're living in the D M V, that same oppression doesn't exist unless you're part of the existence of it. So how do you break your chains to break other people chains? Because we have to make the decision to live. And if you can live in this secret, go ahead.
Speaker 1: I'm okay with folks that doing that. You know, I'm okay with folks to do that, but I want people to own their part of stigma cuz that's a part of the healing process. And I, and people like why you be telling that? I'm not apologizing [00:20:30] that it's true for eight years I was part of the process. Mm-hmm. But when h I v knock on your door, it does create a different paradigm shift of your mindset. You have to invite yourself to say, oh you know what, I made a mistake. I was ignorant. I didn't have have the knowledge that I had. I wasn't part of the L G B T community for real. But knowledge is power. You know, schoolhouse rock, we're talking about ag, knowledge is power now. I know. And now we [00:21:00] are exposed to, but there's a piece of stigma that we have to, and I know people's like don't like when I see it and somebody gonna tweet and email me, I'm on Facebook all I bet I can handle it. But I own many of us own peace of Yeah. What we are afraid of.
Speaker 2: Yeah. I I have to ask there, because you talked about owning the part of stigma that you perpetuated and same, right? Same. Definitely can relate to that. But I have to ask you this because something [00:21:30] people don't really know is that when I worked as a retention inherent specialist, people think, cuz I worked at places that are high profile,
that most of your clientele is gay men. And it's not true. Actually, my program had a very heavy program. I carried probably like 90% of the population. Over 80% were black women. All of whom had found out that their diagnosis had came at the time that they were pregnant. So they found out why they were pregnant, they were diagnosed. My question for you is because I noticed a reoccurring theme, right? [00:22:00] Just anecdotally that that people, they were really, really struggling with adherence. Probably some of the worst adherence I've seen.
Speaker 2: Some of these people have been diagnosed literally in the eighties and they were just now getting to undetectable. But it's because anecdotally I just see that like we created a space for them and there was a, a space for them to really face their own stigma. Like, okay, yes man, you go to the cookout, they're not eating your food. But what do you feel about you? And when I hear you say that you had to face yourself, how important was that in adherence for you? How important did that was [00:22:30] in taking your medication? Did that change the game for you in being able to take care of yourself?
Speaker 1: Now I was like the worst adherent person in the world. Like I'm so like barely restricted in all of the, so like a lot of good treatment I can't get because I didn't know how to, and I, and this is adherence. I didn't know how to be in a relationship. Okay. I didn't know how to be in a healthy relationship and adherence to me meant a long-term commitment. So, you know, I, I use a lot of parables in my own space. Yeah. So I didn't know what long-term commitment looked like. [00:23:00] And when you are diagnosed with H I V, everything is forever.
Speaker 2: Mm-hmm.
Speaker 1: <affirmative> like what is forever when they already told you you don't have a forever mm-hmm. <affirmative>. Right. So it is learning this other space. Right. And I think, you know, so I'll, you know, I'll be black for a minute, right. Many of us, you know, who live in DC you know, it's, it's, it's, it's the running course. We came from South Carolina, we came from, we ran, we came into the DC space. Some of us was here, we got here. Right. But many of us didn't have access to care. We didn't have access to treatment. You know, I [00:23:30] can go boil some lemongrass, right. I can go get some herbs, I can pray, I can do a lot of things, but I don't wanna take these pills. Right. And when I was first diagnosed, people was taking 30, 40, 60 pills a day. Mm. And you're talking about a relationship that was, and I didn't know, I didn't have enough life space to wanna save my life.
Speaker 1: I didn't wanna die, but I didn't have enough life space that I thought that a commitment of 60 pills a day could save my life. So that's some of the difference [00:24:00] of being diagnosed then and being diagnosed now. Yeah. And that, but that's, that's great. We had to go through that to get to this where we are. Yeah. Now. So I think that for many of us, many black people, the relationship with healthcare was different. Yeah. And again, who we was walking into healthcare with were people who had not been good to us. It was people who had not took good care of us. Yeah. It were people who had belittled us or didn't speak to us, talked at us. There was a lot wrong with healthcare. And even in the AIDS service [00:24:30] community, that service system was built for white gay men. And black and brown people started showing up and changing a paradigm.
Speaker 1: And they're like, well wait a minute. We don't know how to do this <laugh>. So I mean I think that was that's some of the battle wounds Yeah. Of being long-term survivors. Yeah. We had to teach people how to do this. Yeah. You can't do that. I mean, I literally had a doctor, a nurse. She was a nurse practitioner. I had, I went to Africa and I got these spear earrings that screwed on each end. Mm-hmm. <affirmative> now she had seen me with the earrings and I had to come back the [00:25:00] next day and I had some different earrings on. She asked me how my whole do that. Like literally as a black person was, it did my whole stretch for that because the next day I hit hoops on and she like touched my ear. I'm like, how dare you? And I didn't have that much Christ in me yet.
Speaker 1: So my hair dare you. <laugh> I was new saved. So, but again, would that mean we're different? Yeah, yeah, yeah. Yeah. So the health system thought we were different. Yeah. You know, so that was part of that, the hearing space. But I'm supposed to trust you and I'm not even talk about who, you know, [00:25:30] women not being part of clinical trials then and now. Mm. Right. So am I gonna grow another boob? Am I gonna grow something that you didn't look for? Yeah. That's part of the adherence battle that we're not part of the process. And often the process is available, but it's not being advertised or marketed where I can access it. It's most
Speaker 2: Yeah, absolutely. Ken, what does adherence feel like for you? How has it changed?
Speaker 4: That's, it's, it's funny. That's my, my story is [00:26:00] probably different. I unfortunate, well I, I'm vain and I'm scared to die <laugh>. And so take the pill, whatever it meant, take that pill. So that was, I was, I was getting skinny looking funny. And I was told you start taking the pill, you'll get your weight back on. You know, the blemishes will go away. You'll start walking. Oh heck yeah. I'm taking that pill. So wasn't it for health reasons? I'm be honest, it was for health, but it was for just looking better because I was looking a mess <laugh>. And so it was very easy [00:26:30] to, to take that pill over time. It's funny, I had this conversation with somebody yesterday. And this is the difference I think between like living with HIV v for a long time, taking that pill every day is a testament now of my love for myself.
Speaker 4: Yeah, yeah, yeah. You know, and somebody said, well why not get the, you know, the injectable? And I think that works for people. But every day when I wake up, it's right there in my drawer and it's like, I love you and that's what adherence means to me. So now it has an emotional connection and it has a physical connection. And my experience [00:27:00] with doctor was, I, I, I was so blessed and I also think I helped me with adherence. I came across a company name, drop us, helping us save my life. Mm-hmm. <affirmative>, it was a support group. And they told you when you go to the doctor, act like you wanted them, you go in there, will the pad, and you ask as many questions as you need to. You tell them, I need five more minutes of your time. And I remember the first time my doctor said, you sure have a lot of questions.
Speaker 4: I said I do and I should. And so I think that what, what [00:27:30] some, for some folks unfortunately did not have that support and don't know how to talk to doctors and don't know their right. And I think that's how we help people. Again, I'm, I'm about helping people not the system. I think the system is so whacked. It's ridiculous. I'm sorry. Yeah. It's not that whacked, but it's whacked. Yeah. But I'm saying I think we, we, we need to help people go into a doctor's office and say I want my 25 minutes. That's Yeah. And I need you to sit down and not look like you're getting ready to go into the next room with the patient. That helps adherence when people feel empowered [00:28:00] that they're in control of their life. Whether it's for physical reasons or health healthy reasons. I think we have to do a better job of telling folks it's your right to get good medical attention. And it's your right to ask that doctor whether he looks like you or not. That's right. To get what you deserve. So I think that's what, what we can do these days in terms of adherence. It's like we gotta teach folks, you deserve this. You deserve a lot better.
Speaker 3: Yeah. This, this conversation is so good. Listen, I'm literally sitting back like watching the podcast like with my popcorn. But no, I think, you know, honestly, you [00:28:30] know, talking about the parallels of, of the black community at that time because there was so much distrust. I mean we saw with the covid vaccine, black folk was like, I'm not getting it cuz I don't know what's in it. You know what I mean? There's still an underlying distrust for the medical system when it comes to communities of color. And you know, I don't think people even really think about, you know, in the nineties or in the eighties, the extreme distrust that you have to have for people to be telling you you have a death sentence and then on top of that, but take this pill and trust me. Right. So [00:29:00] I think that's a beautiful point.
Speaker 3: One thing we talk about, Malachi and I have talked about probably generationally speaking his disclosure and about how that works. And you know, he was telling me that this episode we might see a different perspective than maybe some of our younger guests. So I wanted to know from you all, what are your thoughts on disclosure? You know, you have talked about, you know, not having secrets. So disclosing was not h difficult or maybe it was difficult, but you choosing what space to do. So how do you feel about that when it comes to relationships or just your community in general?
Speaker 1: All right, [00:29:30] <laugh>. So disclosure, I mean, I mean I don't wanna act like it doesn't exist in my life to challenge a disclosure because I was just recent in Dubai mm-hmm. <affirmative>, right. And I was doing some work in Dubai mm-hmm <affirmative> and I was wrong, I'm wrong. A room full of clinicians. Mm-hmm. And I chose not to disclose. So there are places where I feel that I get to choose when and where. It wasn't a rel relevant space. There are places here in the community is not relevant. Disclosure is my gift. Mm-hmm. <affirmative>. Right. I look at it as my gift. Mm-hmm <affirmative>, I choose what I wanna give you. I [00:30:00] don't give people gift cards for holidays and birthdays cuz that's like a cop out. Right. I wanna go find you that bad bumping dress <laugh>, I wanna go find you that something. Right. So I decide how that shows up and I wanna give you what you can handle.
Speaker 1: Yeah. Right. And I'm gonna give you the 20, I'm not gonna give you no $500 jeans if your $20 jeans is in the corner. Yeah. Alright. Because you gonna do what with the $500 jeans you gonna put 'em beside the $20 jeans, right? Mm-hmm. <affirmative>. So disclosure have to be a strategic process of why [00:30:30] and who you're giving it. Mm-hmm If we're talking about health systems, I want you to tell everybody, cause I want your clinicians, whether it's a dentist or whoever, be able to treat and manage all of you. If you are in a relationship. And women hate that. I say this, most women don't agree with me Uhoh, you know, so I was dating, I have a wonderful husband, I had a practice husband, you know, so in between the two, cuz when I was diagnosed we got married, you know, it didn't last because of issues of disclosure, right?
Speaker 1: Mm-hmm <affirmative>, the stigma of he, he was fine, but he was worried about, well who else would find [00:31:00] out? So I had like this window pair of dating and I love dating. I think all women, I don't know about the rest of folks. I think all women should love dating. Right? It's not always a free meal, but it's always fun. And for me, I'm part of the generation like you know like by the second or third dating and guys, we telling y'all a secret, we start writing your name out if it start feeling good or we start quivering. Right? Right, right. We've been like Linda, no, Frank out and fix Gerald. Right. Blank. So that means that you emotionally connected. Yeah. [00:31:30] Yeah. And I'm healing. So disclosure for me is still healing, right? Yeah. And if I'm emotionally connected, I'm at a place where I might create harm.
Speaker 1: So for me, dating disclosure, I was like first or second date I'm telling because you gotta take all of me or none of me, right? Mm-hmm. <affirmative>, there are women who don't even disclose they got kids. Wait, how do you do that? Right. But it happens. Men do that. They don't disclose Baby I was protecting me. My disclosure was about me protecting my emotionally me because I had trauma, I had my hurt stuff, I still [00:32:00] was new. Save I might fight you <laugh>, you hurt me. I wasn't getting hurt no more. Right? So disclosure for me was plus who are you going to tell You don't know none of my friends. It's the first or second date. Yeah. So I went to that like logic space of disclosure was about me, right. And me dating where I was safe that you could, you gonna go Google something?
Speaker 1: What you gonna do? So that's different. But it was that emotional. Once you write Linda, fix Gerald some something, you know? Yeah. [00:32:30] You are emotionally connected. So I tell people, I need you to disclose before you're connected Canal you're creating another level of harm. But if you just here to free dinner and plus if he left, I only had my money for dinner anyway. <laugh>. I always make sure we could go affordable places. Okay. You know, so I look at it a little different. Yeah. Because it's, it's a real selfish lens. H i v is very selfish for me. Mm-hmm I have to make the conscious decision how I show up and how I take care of me. Yeah. In that, in that space. So [00:33:00] I know it ain't for everybody. Yeah. Go on to dinner. How come now they say go to Starbucks somewhere, <laugh>, you know, tell it.
Speaker 1: Find your safe space. Don't. Because once you start meeting family, friends and all that stuff, you are emotionally connected. Yeah. You know? And that is what hurts. Yeah. You know, and I love to tell folks in those 10 years, I only had two people that say, mm, I can't do this. You know, they often said, well tell me how it happened. What happened? Then I got to become the educator, you know? And number two people that said, [00:33:30] no one called me back the next day. It was like, let's talk about this. Yeah. So it's also a teaching moment. Yeah. So to me, you know, I'm like having this like research theory thing. Like it's a teaching moment. And I found the brother was willing to learn and some of 'em was willing to stay. I'm just saying next,
Speaker 5: Kim, were you telling the truth? Were you disclosing to the tree?
Speaker 1: <laugh>. Oh lord <laugh> it's
Speaker 4: A whole different world. See what we, what we talk about disclose it's really is just develop it. It it probably just sexual for the most part. We could care less. [00:34:00] Not we, I'm generalizing an entire population, but it's, it really is. Like we, if we're gonna do something didn't disclose, I could care less about family and friends knowing that's not really a thing for me. I think the challenge for gay black men and gay men is that it's that sexual moment. And then it's also that point, you know, there was a theory, like tell them the first day you meet them, get it out of the way. Yeah. Then it be, well no wait and see if you liked them then either way it was a trick pad. My, the way that I do it now, it's, I just, if, if I like you, I'm telling you, I'm gonna tell you up front.
Speaker 4: I [00:34:30] don't think the whole world needs to know, and particularly if we're not gonna get into anything. But I do think disclosure has changed. And I think that that's, it's kind of a challenge. And I think we have to have a real conversation with medication it the way it is now. People are not talking about this before sex. Yeah. So it's not even happen. So the explosion's really sort of sort of taken a backseat because you either try a kind of sex or you think of sex that is safe mm-hmm <affirmative> or you are on medication so you figure I'm not gonna do anything. Or they are not doing it is becomes such a non-conversation [00:35:00] and our community now. But for me, if I was getting to know somebody and want to get involved with them, I would definitely tell them. But I think disclosure is a, it's a, it's a non, I believe for the most part. And I, again, I can't speak for everybody in my universe. It is a non-top.
Speaker 1: Mm-hmm. And, and I think again you just said that whether you're talking about a sexual interaction or you talking about relationship, most women come looking for relationship. Right. We were conditioned right. To seek relationship. Right. So I definitely know in other cultures it's about sex space and some women have sex space and [00:35:30] you're right. I think particular now because you equal you and other things, folks are just having sex again. Like right. Anecdotally. And I love it. I'm not mad about about that space. But again, I think when most women show up and not to say men don't. Cause I know many men across identities and you know, sexual orientations look for relationships. You know, one of the conversations recently talking about, you know, because of you equally cuz of some of the treatment folks are holding out and you may not decide you really like that person.
Speaker 1: Like, like that person to somewhere [00:36:00] into that relationship. So how then do you disclose when you three, six a year, you know, 12 months in? Yeah. That's a whole different dynamic. So I know in my educating and working when training and doing stuff, I'm still encourage people that it, you have to figure out where for you individually does that conversation show up. Because it's a whole different thing. If you kept that for six months a year and both of you are now, if you just sex and work it out, go ahead yell them. I ain't, I ain't mad at you.
Speaker 4: [00:36:30] It was a safety issue too though. Yeah's. Why you can't tell everybody on the street and even a date, you have to be careful cause you never know that they could pop off. Shoot you. You just don't know. So we always used to talk about that. Be careful even when you are disclosing, make sure you're in a safe space. You're not at somebody's house. You can get home if you have to. That's you have a plan. Oh yeah. You gotta have a plan if you're gonna, if you're gonna disclose.
Speaker 2: Yeah. Yeah. I think my safety plan for it has always been too, and I'm probably more, most like you Miss Linda writing the name, you know, just [00:37:00] like you in in the sense that like it's on my profile, it's out there. It's the first you gonna see it and it's Googleable. So I've been doing this enough, I've been open enough about it For you for it to find out That comes with its costs. Yeah. It comes with its cost upfront but it has given me safety long term. Cuz you can't say you didn't know if now if you didn't know you ain't read baby. Now I'm not gonna tell you again. It's on the profile. So if you ain't read these good words and literally, honestly for those who have seen me on Jack and and Grinder, it is literally all that's there. That's all I have to [00:37:30] say. <laugh>
Speaker 2: Like, is this because I want to, to make sure that's communicated clearly. But I, but I don't disagree with the voice of this generation that I'm hearing. Say, that's not your business. I'm undetectable. There is no risk. It's not your business. I, I don't disagree with it. Just from the lens of, for me, when I Sarah converted, I didn't care what the intention of the person was. I didn't care. That didn't matter. I owned immediately. Like the moment that I decided [00:38:00] to have sex without a condom, that was the risk I took. I owned the inherent risk, the natural consequences of that. And I encourage people to, in your own life, take control the same way you take control and you're in the driver's seat as far as your healthcare, you're in control. And that fully, so whe whether that means prep for you, whatever, whatever protection is comfortable for you, have that protection and protect yourself because you really can't trust other people to share anything with you. Cuz like you said, safety issues. You don't know where people are with their life. I can't tell a person how [00:38:30] to approach stigma. I can't tell. I mean, you know, I'm like you must send AKA fights. I'm not really worried about it. <laugh> if I had to. But there are plenty of people who I have seen be in severely dangerous situations. That's right. Because of disclosure. I would never tell anybody that you owe anybody
Speaker 1: That. Right. Right. And, and I don't. And there's an issue of criminalization, right? Mm-hmm <affirmative>, we haven't talked about that particularly this far into the epidemic that we're still looking at H criminalization, you know? Mm-hmm <affirmative> and in the dmv that's an issue if folks don't know it. So disclosure is also [00:39:00] not just about personal space. And I love that you say it's in my social media, I gotta, I have a pathway for you to see that this space is true. But for that person who haven't chosen that, you know, and much as I like and it's like those are like 40 year old like laws or rules or norms. Cuz some of 'em may be not even laws, but it's a norm in a norm by built in ignorance and biases. Mm-hmm. <affirmative>, you know, so you, you know, I teach young people that piece too. But also, I mean I remember being 21, like I'm [00:39:30] like I'm not forgetting it.
Speaker 1: I absolutely love being 21. I will only go back if I could go back with what I know now. Right. Yeah. Because I would do it all over again. Yeah. Right. I I, I'm like I had so much fun <laugh>, I had so much fun in my twenties, like I would do it all over again. So I love telling young people like do it but take these tools that this 57 year old has for you. You know, I teach my sons, you know, I'm like, I have sons. My son who was born when I was pregnant, Isaiah, he's not positive. You know, he's 32 [00:40:00] years old now. You know, I taught my boys like what condom you says, you know, I taught my boys how to use the condom. Right. He go to practice. Right. And do it in the morning when you get up cause you're 16 and I know what happens in the morning, right?
Speaker 1: So being the educators of what H I V is how it looks like goes with aging. You know, we are legends, you know we are here, we survive. So there's an ownership of aging that we're teaching, but there also is a learning space even in our own health. Like I know the [00:40:30] old H I V I'm looking at now as I'm aging, right? Like where are the comorbidities? What are those other things that are happening? And you know, for some of us we're baby boomers twice over, you know, in the H I V epidemic because well over 50% of cases now are people over 50. Right. We're aging and we're thriving. Mm-hmm <affirmative>. But we're entering a place of H I V where we've never had this many people living with H I V. What does our health systems need to do to prepare for us?
Speaker 1: What do I need to know? We've been such [00:41:00] in this H I V lens, how do we take away that H I V lens and look at a broader aging space that, you know, some of these other health conditions are gonna start overtaking what H I V is cuz we do have such good treatment available to us now, you know what's gonna show up? You know, I our husband, you know we're talking about you know, male healthcare, you know when you're talking about black men in H I V and you're talking about black heterosexual men in H I V healthcare system is not set up for them. The healthcare system is not set up for us aging [00:41:30] and entering new health systems or health clinics where the AIDS service organizations have been very comfortable, very warming to us. But if I come up with a cancer, the cancer center ain't ready for me. You black and you got AIDS and you want some what? Stop playing. So there's some other conversations that we have to have even now. We gonna have to teach new systems how to be prepared for us and those after us. People have been aging with H I V since the epidemic, but [00:42:00] this is the largest cohort so to say. Mm-hmm. <affirmative> that there ever was. And I'm glad to say that they ever will be. Right. But that's hitting us as well.
Speaker 2: Absolutely. And we are glad to see it. We are glad that this is a large cohort of people who are living. It leads me to my final question because even as we're seeing like medications, some aging so long be that they're realizing like, oh wait, this causes long-term bone density. We've never had a generation live long enough to notice that the medication had bone density issues. And we're seeing so many changes in formularies [00:42:30] as people who've, you know, kind of the OGs what, no. What effects have you noticed, if any, like on your body long term after taking moti, taking medication for so long? Like has it been changes to your body? Have you noticed the effects?
Speaker 4: I don't. I think my bones are, yeah. I wake up in the morning and it hurts. It's, I, if I had to get out of the bed running, I couldn't do it. <laugh> okay. I do so small thing to the restroom every morning. It takes like five minutes to get there. But I think what's interesting is we don't know what would've [00:43:00] happened in, if without it. I could, my bones could have been in this shape and, and you know, turning 60th, you know, regardless of, I think that's the challenges we can't, there's no real comparison because everybody's body is different. Mm-hmm. <affirmative>, uh, I, you know, I do get concerned as I, you know, get older that some of those challenges will, will probably happen. But for now, I would say the only thing that in terms of like medication, I think that my weight, you know, gut.
Speaker 2: Yes.
Speaker 6: Yeah. We used to call it the medication. Good. Yes.
Speaker 4: [00:43:30] I just had my chop, I just had it taken away. That's the only thing I can say to do about that. But no, I think that that's, you do worry about your body doesn't look, it looks different. And that's the best word I can describe it. Like it doesn't, like the stomach is not the stomach of a Yeah. But yeah, so that's what I'll say about the medication. I think it, it just changes folks differently and to your point, we just don't know. Yeah. And it's gonna be different for every person. Yeah. And so we have to be available for that. And I'm not sure we're not available for that. And I don't even know [00:44:00] if people are thinking and you know, for ourselves like what should I be doing? What should I, I mean are you talking to your doctor about that? Like what else could I be doing?
Speaker 4: Yeah. We've been looking at my help my HIV for the last 15, 20 years, but now we should be having other conversations, you know, prostate cancer, colon cancer. But I also think that goes back to particularly for black men, you're gonna wait till they fall off Cause the H I V is under control. You're like, I'm not, I don't have the bandwidth to even think about this. So how do we encourage people to start thinking about those other conditions [00:44:30] that could come, come along and be proactive so that you're not waiting until they fall off. And I think that's something that's something we really need to be aware of. Yeah,
Speaker 1: Yeah. Yeah. So I, I ashamedly plug our organization. So ribbon, we actually have a grant right now. We are Rockford Aging is, uh, national technical system for persons aging over 50. And we're looking at that, right? So we're looking at, the research tells us that we are aging probably 10 years of our age. So at 57 I probably do feel like the [00:45:00] 67 year old at times when I'm looking at the questions I should be asking at 57, I need to be talking to my older sisters and family members. And what questions are you asking at 67? So research have already shown us that we aged faster accelerated. So what are those questions that we need to be asking? Again that list what how do treatment and what other comorbidities we have? You know, um, H I V is good, right? So for most of us, not all of us, many [00:45:30] of us in particular, those of us that have been aging with H I V, not all of us are viral suppress, right?
Speaker 1: Viral suppression isn't the outcome of good h i v health. That's not, that's not the endpoint of that space. But how do we intersect with these other things? You know, arthritis, right? So I don't have 'em on nail, you know, those three or four inch chills tomato, like how does that show up? Cause I took off an ankle brace to put these boots on, right? <laugh>, is that about bone density? What are those things about? Yeah, so we do have [00:46:00] to look at, and we know at our organization we are looking at very much like how do comorbidities research tells us by 2030, everybody over 50 living with HIV probably would have another second comorbidity or some other chronic management disease that they're looking at. Again, how do we manage that? If H I V is okay, how do we prepare for that something else When many of our population we think about, so I call them the elders, the old white gay guys.
Speaker 1: And I can say that cuz [00:46:30] us, they know, I call them that, right? They're in their sixties, seventies and eighties. That's a very different lens for me at 57 when we are thinking about frailty, right? When we are thinking about cognitive. So I don't want folks to think the aging is about this great fifties, sixties, you look, they're folks in this epidemic. They're well into their eighties. Um, the oldest person I know was 92 mm. You know, so we've been aging in how HIV v shows up there. We have to be aware [00:47:00] of when we have to keep our lenss open and how do we manage that? How do we manage that? Well, space people are being diagnosed late into their fifties already and how does that show up? You know, folks entering into this journey later in their life and may have other chronic disease. When you look at the frailty of our community, people with walkers, people with the little scooters in their forties, fifties, how much of that may be related to h i v cognitive long-term care or [00:47:30] treatment? We don't know yet. There's a lot of work to be done.
Speaker 3: Yeah. There is a lot of work to be done. And I think you said it beautifully. Aging and thriving. Yeah. Is what you all are doing. So we want to thank you so much for coming in today. Absolutely. Let people know where they can follow you, find you if they need community reach out to you, Linda, we'll start
Speaker 1: With you. Wow. So definitely our website is ribbon three.org. I'm on Facebook. I think I'm Linda h Scruggs on Facebook. I am LH SCRs on Twitter and Instagram, all that kind of stuff. I [00:48:00] may or may not respond to you, but you can Google me and I I take phone calls. I'm old school. I almost wanna say, you know, 2 0 2 2 9 9 7 8 3 2. I'm gonna respond. You know, I'm okay with that. We want, as Ke Ke Keith, Kevin Keith said, excuse me, we wanna connect you with who needs to be connected. So yeah, you can call me Text Googley. We gonna respond. Rock four Aging. We wanna connect with the aging community to connect you to the tools that you need [00:48:30] to fully thrive and thrive well with HIV V
Speaker 4: Okay. I'm old school. I don't have all those. All I have is Facebook <laugh>, you can find me on Facebook. Ken j Petru, uh, on Facebook. Also, I will say this, if somebody wants to reach out, it's 2 0 2 4 9 8 7 4 2 6. Text me, I'm available. The, the, there's so much grace in aging with HIV and I, I I think we owe something back to the community Yes indeed. To be in this space. And so that's why I would, and [00:49:00] just contact me. But I do work for Health, health hiv, you can reach me there, Ken, at health hiv.org around education as we've been talking about a lot today. So feel free to reach out, you
Speaker 1: Know? Yes. Great. It's great hanging out with you guys. It is. Yeah. Thank you
Speaker 3: Both. Well thank you guys so much. And uh, listen, we are having of this episode, but we do have a website, Malachi, come on. Let's see if you got it cuz I don't.
Speaker 2: Dcns i v.org/podcast.
Speaker 3: Mm-hmm. Hmm. <affirmative> and use our hashtag positive voices. We [00:49:30] want to hear from you. We want to know what you're thinking. If you love our guests like we did today, make sure that you guys use the hashtag so we know what you want to hear. And a shout out to our guest. Listen, we are about to get up outta here, but we will talk to you next time on Positive Voices.
Speaker 7: Five Positive Voices is produced by Chris and Tiana. Our production team is led by C3 Creative Agency.
The AIDS educator, activist, and renowned leader in the HIV community. She has worked in the HIV/AIDS community for over 31-years, both nationally and internationally. Her start in HIV was as a women’s health advocate shortly after her HIV diagnosis in 1990. Over the past 30 + she has done to denounce stigma and discrimination against people living with HIV/AIDS.
In 2012 Linda co-founded and incorporated with her colleague Vanessa Johnson, JD, Ribbon (formally known as Ribbon Consulting Group, LLC), a leading provider of skill-building training, technical assistance, sustainable organizational development, and leadership development services. At Ribbon, Linda integrates her life experience with HIV, substance use, and mental health with a public health and policy lens to facilitate change in communities to impact and improve health outcomes for persons living with HIV.
Her accomplishments are many, as she stands to be a Positive Voice in the HIV community. In 2010, she received an Honorable Mention by President Barack Obama. In 2012 she was a plenary speaker at the International AIDS Conference. Linda is currently the Board Chair of the Board of Directors for the Well Project and a member of the Board of Directors for Sister Together and Reaching, Baltimore, MD.
Simply stated, Linda has committed a portion of her life to ensuring the health and rights of persons living with and vulnerable to HIV are high priorities to policymakers, systems of care, research communities, and the communities in which these individuals live and play.
Ken currently works at Health HIV in Washington DC as the Director of Capacity Building focused on HIV Prevention and Care and Harm Reduction. Ken also worked at NMAC as the Director for the Center to End the Epidemic. For over five years Ken worked at the Washington DC Health Department gaining perspective from a systems level. He has an extensive background in program development and managed various local federally funded programs. He was the Chief of Programs at Metro Teen Aids, focusing on youth. He also served as the executive director for the Wanda Alston Foundation which provides housing to homeless youth.
Ken is a native of Chicago Illinois; he moved to Washington DC in 1989 in pursuit of professional growth and development. Ken began working with gay men in the late nineties as a volunteer facilitator for a local gay men’s discussion group. In 2000 Ken accessed services at local HIV community-based organization, Us Helping Us, People Into Living. Shortly after his experience as a client, he immediately began volunteering to assist in a variety of functions, thus tapping into his passion, helping others. From volunteer to client to executive director, Ken’s life experience has informed how he continues to do this work. As an ongoing consultant for many years, he has provided capacity building and subject expert consultation to such agencies as the Center for Disease Control, American Psychological Association, Stroger Hospital of Cook County- Chicago Il- Department of Psychiatry, and ABT and Associates. Ken remains committed to serving the community by participating in various interest groups and committees. He currently serves as a commissioner on the Washington DC integrated local planning.