Speaker 1: Don't let no man or woman put you in a position that they treat you bad because you are HIV V positive and you stay there because you don't wanna venture out and tell anybody else.
Speaker 2: Hello? Hello and welcome to another episode of Positive Voices. I'm one of your host Leah Henry.
Speaker 3: I'm Malachi Stewart. And today's episode we're gonna be talking about black women in H I V. This is a really important subject because we know that of the 12,000 reported cases in dc, 28% [00:00:30] of them represent men who have sex with men. But black women are just behind that, representing more than 16%. We know in Montgomery County, 26% of the reported cases are represented by women and in Prince George's County, 30%. So we're really excited to have Jackie and be here with us.
Speaker 2: Yeah, absolutely. And you know, we realize on positive voices that, you know, truly telling your story is how we spread awareness. And so we're excited to have you ladies here today, and I feel free to get your teeth. We're excited. And so I'll [00:01:00] have you start, tell everybody your story, diagnosis day, and then we'll move from
Speaker 1: There. Okay. I diagnosis my diagnosis with, I was in penitentiary in the jail. Mm-hmm. <affirmative>, my background comes from street walking, prostitution and that. And so that's what, that's how I got to the jail. But once I was in there, they did a physical on me and they found out that I was HIV positive.
Speaker 2: Wow. [00:01:30] And you tell us your story. You okay there? You got your teeth.
Speaker 1: Yes, yes, yes. I was in a drug treatment program
Speaker 1: For the eighteen times, but this time I knew I was really serious. I asked for the test. I don't know why all the prove to you that I wasn't positive because it didn't fit my category. I wasn't gay. I wasn't a male. And so I said, that ain't me. And I took, uh, test in June of 1986. [00:02:00] It's been 36 years now. And I was devastated. I wasn't gonna tell nobody cuz I was scared of death to tell anybody. But I told five people, my immediate family, my ex-husband, my therapist and old boyfriend of mine. And I told them I was gonna kill myself. I wasn't gonna live with this that, so how they did Ryan White so badly. Mm-hmm. And I was just scared. I [00:02:30] was scared. I was scared. Mm. And I, I, and what I found out is that when you're meeting people and they kind of, you're telling me a diagnosis, they are, you know, they back up or they stop talking to you.
Speaker 1: Where I went through that a lot. And even in my relationships with men mm-hmm. <affirmative>, it was hard for me to tell, tell a man, you know, I, I was having sex with him. I tell him that I was HIV positive. But, uh, I was blessed. I, I had [00:03:00] two marriages and the first marriage I had was with a man. And the second marriage I had was with a woman. Mm-hmm. <affirmative>. So it, the, the females don't seem to have the same problem that men do. You know, men, I guess they just scared and they, they don't want nobody to know. And so I wasn't one of these people. I would not hide that I was HIV positive. Yeah, yeah. Just let people know because I didn't wanna have to go through that, them changing their mind or saying [00:03:30] something bad and embarrass me or something like that. Yes. And in 85 it was called Bridges. Mm-hmm. In 1986, it was called H T L V three Virus. Mm-hmm. <affirmative> that they, that's what they told me I was diagnosed with. And then at in 87 it became HIV.
Speaker 2: Mm.
Speaker 1: So I am 39 years into HIV.
Speaker 2: Yeah. A lot of similarities in your stories about the experiences, I think, you know, the change [00:04:00] with you all, you know, finding out your diagnosis close to almost 40 years ago, we know a lot of things have changed in the advancement of medicine. Mm-hmm. <affirmative>, a lot of things have changed with stigma. Talk to me about the trauma that you kind of endured. You're talking about every year there's a new name. Every year there's a new medicine. Every year there's a new, what is it like living knowing that there's this constant change? It, it, it feels like almost there's no control of your health or the way that you can come in and advocate for yourself, especially [00:04:30] as black women. Okay. In this space. So talk to me as a black woman, how, you know, being diagnosed almost 40 years ago, what that was like.
Speaker 1: It, nobody knew what to do with h HIV clients. They didn't know what to do with me. So they sent, when I tried to stop using drugs, they sent me to the mental health
Speaker 2: Mm wow.
Speaker 1: Unit. And so, and they treated me real bad, you know, and that was just that way they felt, I understand people get scared or don't wanna [00:05:00] be with someone that's HIV v positive, but you know, you believe in the God that I know about, it's going be all right. Come
Speaker 2: On somebody.
Speaker 1: Yeah. Yeah.
Speaker 2: What about you?
Speaker 1: I tell you, I was traumatized. I was not going to tell nobody. And I thought my life was over because I was getting sober too. When I got sober at the same time that I found that I was positive and what helped me to come to grips with it. I didn't wait [00:05:30] long time. I was diagnosed with 86 and I started working on H I V in the next year cuz I was recovering a alcohol to get addict. And that's what I used I said, oh, this another disease. And that's, I got through there, through the book of job, job helped me a whole lot. Yeah. With the stigma that they placed on job, you know, with leprosy and things back then and there. Yeah. And I've been doing it right ever since. Yeah. My mother and I told my [00:06:00] mother, she told me to use a certain bathroom.
Speaker 1: Right. It was two bathrooms in the house. I got, I have to use one of the bathrooms. Wow. This just before me and one this, the padding on the bed had to be one of my paddings, not someone else's in the house. You know, they had, I had to keep everything that she was going to, what I was living had to be close to me and I could not, um, I couldn't understand that my mother treated me that way, you know. And she wouldn't, she didn't wanna talk [00:06:30] about it or nothing. And she still don't wanna talk about it. Wow. She think it's, she think the God can can get, get rid of it. I do thought, thought that too. But he, you know, I learned that what was done, what was done, you know, and try to live accordingly the best way I can.
Speaker 1: But the rest of my family, my mother has 14 brothers and sisters and the rest of my family, they were more understanding than my mother. Mm-hmm. [00:07:00] <affirmative>. So that, that bridge, I mean that, that put a wedge in our relationship still today. Mm. She just, she didn't want to talk about me being in therapy. You know, everything is that God is gonna fix. Yeah. Yeah. And so he didn't, and you know, and life goes on and my family was very supportive. He go, my aunt told you gonna be all right. I said, you say that it's not you. And I would tell them my family members, cuz she was one of the first people I told [00:07:30] and they was very supportive. They didn't treat me like that. Like mm-hmm. I know my grandchildren, she still tells them, don't drink after me, don't use no fork after me.
Speaker 1: Oh yeah. It's life <laugh>. She just won't get it. And I said, you should read about 'em mama. You know, and I gave, what's some information? You read it, you know, so. Mm. It's a love and hate relationship I tell you. Cause she can be really mean when it comes to that. Yeah. But I didn't tell my children when I was diagnosed. [00:08:00] Mm-hmm. <affirmative>. Wow. I told them when the movie, when Ryan White came out, that's when I told them mm-hmm. <affirmative> and my little bratty daughter, the baby. And I said, I got something to tell you. I came in the house and they were looking at the story and they saw how they was treating Ryan. Yeah. It was horrible. Mm-hmm. <affirmative> to go to school, they burn house down and mm-hmm. <affirmative> whole nine yard said, ma, you should come. Listen. I knew what it was, they was looking to it and I said, BeWell this is my opportunity.
Speaker 1: Time to tell [00:08:30] them. Mm-hmm. And after they went over, I told them I had something to tell them. Mm-hmm. <affirmative>, I said, your mother's HIV positive. Mm-hmm. <affirmative>, because first I, do y'all know anything? She said No. They said we know. Cause someone say no, it's something you have to do to get it right. And baby girl said, mother, don't use that for no excuse. Mm-hmm. <affirmative>. And I was like, oh no, she did say that <laugh>, she checked you. Yeah, she did. Yeah. And then she was working in the field of H I V too, so [00:09:00] what else? And so she got real educated and they used to go to places with me because I got star help. I'm founding board member of the first women H I V AIDS organization in Washington, DC that went under, it was called the DC Women's Council on aids. Mm-hmm. <affirmative>. And that's how I got started with advocating for myself. And I used to work in Department of Health and Human Services that they tried to discriminate against me, but the Surgeon General saved me. [00:09:30] What? Yeah. Her and Dr. Mullin. Mm-hmm. <affirmative> was my supporters and things and kept that secret. And I was, I was, and I lived. And I, because that was my first job, first legal job anywhere.
Speaker 3: <laugh>. <laugh>. I have a question about that, the advocacy, because you mentioned, and this is for both of you. You mentioned, you know, at the time of your diagnosis, the traumatic feeling and you both kind of talked about, you talked about not wanting to live mm-hmm. <affirmative> mm-hmm. <affirmative> not, maybe even if I'm understanding you [00:10:00] hearing beyond what you're saying is like not being sure if there is a reason to live or what life looks like. Yeah. Yeah. Afterwards. How important was advocacy? Advocacy for that? Like how did that change things when you started doing the work in the community?
Speaker 1: Yeah, it definitely did. I started talking about it in, um, NA meetings and AA meetings. I started there de disclosing. So it made, it kinda, it made it hard, but it made it good too. So, you know, everybody's not gonna like
Speaker 3: You, you were getting your feet wet. Right.
Speaker 1: Yeah. <laugh>. Yeah. [00:10:30] Right. And so I've, I've done several things to advocate for people that, especially women that has h, hiv mm-hmm. <affirmative>, you know, you were saying, talking about, you know, how you've been treated and stuff. It, every person, every person I met for some reason they couldn't talk to me. Mm-hmm. <affirmative>, you know, especially men. Cuz what happened, I told it in the meeting and they told it somebody, he told somebody, you know what I'm saying? Mm-hmm. <affirmative>. And so [00:11:00] it was just crazy and, and nobody really knew what to do with us. The women talking about the women, they really didn't. Well I didn't disclose cuz I had children mm-hmm. <affirmative> mm-hmm. <affirmative>. And I thought about it ain't about me cuz they have to live on, they got to go to school and I know how cruel kids can be. Yeah. And so I gradually, cause I got into the speaking circuit and then the advocate, matter of fact I spoke for Julian Bond on [00:11:30] TV and things and Channel seven did a segment there. And, uh, my kids, I, and that's what the main point why I didn't, and people talking about free, you say I am free mm-hmm. <affirmative> and then I said, people ain't lending you money. Mm-hmm. Hmm. <affirmative> and they know you dying wage. I was trying to buy a house and a car mm-hmm. <affirmative> the whole nine yard. Oh wow. Wow. So I wasn't putting that out there. Yeah, yeah, yeah. <affirmative> that's important. After I got my stuff <laugh>. Yeah,
Speaker 2: No, that, that makes sense. And I, I think, you [00:12:00] know, one of the reasons that we wanted to have an episode about black women and HIV is because we don't, like you said, they don't know what to do with black women. Mm-hmm. <affirmative> for women in general because the face of H HIV looks so different. Right. Yeah. We assume it is men having sex with men mm-hmm. That are the face of this. And at the time both of you were diagnosed, that's what it looked like. You even said yourself, this not, this is not me. Mm-hmm. <affirmative>, this isn't me. So, you know. And then I think it's a very interesting point too, that you said that, you know, your, the reason that you decided not to disclose was [00:12:30] one for your children. Mm-hmm. <affirmative>. And I think that there's something powerful to be said about the fact that disclosure meant danger. Yeah. So talk to me about some of the things that you all have had to overcome as women, you know, 40 years ago, almost being diagnosed with HIV I mean, you talked about you almost couldn't buy a house, you couldn't work. But talk to me about some of the hardship that you have experienced in your journey, you know, with, with some of the stigmas that were in place almost 40 years ago.
Speaker 1: Well, the, [00:13:00] the most, not saying the most, the, the way that people treated you based on your H I V status, it wasn't even looking at you as a whole person. Mm-hmm. <affirmative>, they just looking at the status and some of you were very, very mean, you know? Mm-hmm. <affirmative> very mean, like the church. Mm-hmm. You know, they would say you going die. Mm-hmm. Yeah. You know, and it is, it's, and you shouldn't be around other people, you know, and people didn't wanna drink behind me, eat behind me, you know that mm-hmm. <affirmative>, all [00:13:30] that crazy stuff. Was looking for starting a job in I v field. Mm-hmm. It's HIV coalition. Yeah. And they, they helped me be, be more comfortable with myself because it was a H I V organization mm-hmm. <affirmative>. And so I kind of just went up and went in, took up, up, up into my job. So eventually I created my own company. Mm-hmm. And I had a nonprofit for women and we provided prevention services for over [00:14:00] 13 years. But I, I've always been a little part of H I V but the, the things that they talking about now are mental health. Mm-hmm. <affirmative>. Cause you know, mental health came along with, I was suicidal too. And I still go that through that every now and then. Yeah. That I, I, you know, I feel lost or not want
Speaker 2: 40 plus years, almost 40 years later. Yes. There's still, there's still
Speaker 1: Stigma is terrible still. I'm telling you. It's, it was a horrible situation. Yeah. [00:14:30] Trying to do it one day at a time. And that's where I have to stay in the day. Yesterday gone, I can't do nothing about that and tomorrow ain't promised to me. Yeah. So when I go from there, cuz I, I be depressed. I mean all the time I was holding up everything. But I tell people I'm a human. Yeah. And I still feel things. That's right. But I, I don't allow you to dismiss how I feel. Yeah. And it's okay to feel however you feel. Yeah. And that what gets me through is trying to, [00:15:00] knowing I could help women. Cause I used to be a case manager also. Me too. And I still work with the health department also mm-hmm. <affirmative>. Mm-hmm <affirmative>. So since I've been retired in 95. So I'm trying to do what I can do when I can do it.
Speaker 1: And it's most of the time I help women don't be pessimistic about what you wanna do. Write it down. Mm-hmm. <affirmative> and I used to do support groups. Write down what you want, what you see and what you wanna buy. What write it down. Mm-hmm. <affirmative>. Mm-hmm. <affirmative> and my list depleted. Had to add [00:15:30] some more stuff to it. <laugh>, I wanna do a camel, I wanna go to India, buy a whole bunch of clothes and things. Yeah. And I love me more today than I did yesterday. Yeah. Because it has to given me life that I can do anything long as I say sober now and I got God in my life. Mm-hmm. <affirmative>, y'all know I try to run the drove witnesses away. <laugh>, I told em I was psychotic, got out drug treatments to them more thine and HIV parts, <laugh>, they didn't [00:16:00] go nowhere. And that's what I preach.
Speaker 1: I have a bad taste in my mouth for the church cause they was rejecting us and that's the time we needed them most. So. And I said the stigma is still there. Oh yeah. Yeah. Why? I live in kicking so I mean, don't be so ready to go out there and throw your name about that girlfriend. <laugh>. If you can't handle it, don't throw it up out there. Mm-hmm. <affirmative>. And that's the kids being able to handle it. What comes down the pike your way. Cause it, you know, it's not a good feeling. [00:16:30] Mm-hmm. <affirmative> at all. Mm-hmm <affirmative> to be discriminated to get in that kinda way.
Speaker 3: Mm-hmm. <affirmative>. And you said something that was so, I think powerful. You rarely hear people who are advocates who work in this field say, I still have hard days. Yeah. Say that I'm still depressed. Yeah. Sometimes mm-hmm <affirmative> that sometimes it's still hard. I know from doing the work from, from you know, being a retention specialist from you know, supporting case management that how we feel about ourselves will reflect [00:17:00] on how we are able to stay retained in care. How we're able to adhere to our medications. There is somebody watching right now. There's a black woman watching right now who is living with h i v who is still having hard days, who was still depressed. Who is having their adherence affected by that. Who is having their ability to go to their appointments affected by that. What would you tell them about your story? What would you say to them in that moment?
Speaker 1: Um, I, I go, I go to the doctors all the time. People [00:17:30] say why you go to the doctors, say, I say cause I want them to catch wherever I get before get it. Mm-hmm. <affirmative> and uh, and I take a lot of my medicines, a lot of some at night. So if I have any, if it new stuff, if it's going affect me, it's gonna do it while I'm sleeping stuff and I'll know how to handle it when I come up. But I, I treat myself royally anytime God buy me something, something to know my appreciation to how I learned how to, and that's [00:18:00] how I do. Cuz I went back to school, got my g e d and I was real happy at 30, at 30 years old. And I, and those are some of the things I did in different segments of stuff that I did to empower me.
Speaker 1: And I said I could do this cuz that's how you do. You accomplished this stuff off my list. You just write a list what you like about yourself, what you don't like about yourself, what you love about yourself and what you want to do. And that was one of my first things I wanted to do. Get [00:18:30] my GED back. And that's when I got into the federal government. And from there I went on and just began to thrive. I was empowering myself there, but I'm thriving now to keep doing, even though the medicine didn't mess me all up and turn on. But that's why we these, to hide all that, the fat and stuff. And so, and I just try to play positive stuff. Music, I love my Beyonce but ain't Patty. [00:19:00] And what I was doing when I was there was Patty LaBelle.
Speaker 1: I got a new attitude and I used to get up with my kids and we would play that and do to Richard Simmons in the mornings and we used to do all that stuff. But I get tired. I do, I get tired of taking medicine, but guess what? Every time somebody call tell me somebody died, I say, you, I think you better rethink that. Don't you wanna take your medicine <laugh>? I say yeah because like they said, it is fine and dandy butt cuz if you start [00:19:30] going downhill, you are getting ready to die if you stop taking the medicine. Cuz that's what keeps us alive
Speaker 3: First. And be, it sounds like your resilience is really rooted in constantly being intentional about reminding yourself of all the reasons to live. Yes. Acknowledging that you have those moments, acknowledging exactly that there are moments that you feel depressed, that you feel sad, that you feel overwhelmed, that you don't feel like taking the medicine, but being intentional about, but here are all the reasons I have to live. Is it the same for you
Speaker 1: Jackie? Well, I told my daughter, she was very [00:20:00] kind to me when I told her she's been my support for a long time. Okay. And I used to, we both for us used to do support groups and stuff like that. Mm-hmm. <affirmative>, my goal was to teach women how to be in a relationship and not to be so desperate. Cuz a lot of times you, if you, well, I could, I could tell you what, what I went through with feeling that I had to be with somebody mm-hmm. <affirmative> that accepted me, but they was gonna treat me bad and I still would stay there. Mm-hmm. Mm-hmm. <affirmative> and [00:20:30] because I was so desperate that I didn't wanna be alone. Yeah. But once I began to build myself and realize how important I am, it got a little, it got a little easier. I still go, like I said, still go through the depression thing because recently I just started taking my medicine again cuz I had took a break because I wanted to die.
Speaker 1: I wanted to know, I wanted to see myself go. I would imagine in my mind how I was gonna kill myself every day. [00:21:00] So I really, I, my, my diagnosis with depression is really, really getting bad right now. So I have to be careful who I have in my life that's telling me things. Mm-hmm. <affirmative> and Yvette and I had known each other for a long, long time. And so she came back in my life this last month, wasn't it this last month and this month or so. Yeah. Yeah. And I was so grateful to have her back in my life, someone that was HIV v positive to think [00:21:30] the way I thought, you know, because who would think that I would create a whole program for women? I would get to that level where I needed to be in charge because it wasn't getting done.
Speaker 1: Yeah. And so I have, I started off with HIV been doing HIV stuff with the health department, but eventually I went into recovery stuff dealing with substance abuse and other, other drugs. Mm-hmm. <affirmative>. Um, because [00:22:00] I am 37 years in recovery and I can't believe it. I don't know how I made it, but the grace of god, you know what I'm saying? Mm-hmm. <affirmative> because I was ready to leave here, it wasn't working out for me. Yeah. And so, but I, I'm, like I said, Yvette has come back in my life. She's trying to put me back on the road with dealing with H I V. Um, and I didn't think I would ever go back, but I did. I was glad to go back.
Speaker 3: It sounds like the [00:22:30] sisterhood Yeah. Is really important. And I'm, and I remember you said in the beginning that they didn't know what to do with us mm-hmm. <affirmative>, it sounds like we still may not know what to do. It sounds like there may be areas where we're still missing, particularly with black women Right. How to support them. What, what do you feel from your observation, both professionally because you both have worked in the field and just your own personal experiences, what are we missing? What support is needed? What would be helpful?
Speaker 1: Transitional housing, independent [00:23:00] housing for women. Okay. Not just women with children, but just women, you know, women by themselves and they don't have a lot of places. I've been advocating for housing for a long time, but it, it is, they just getting kind of aware of having places for us to go and, and they're usually not that expensive. So that's a reason why, you know, you can still hang on to the hope that your life will get better.
Speaker 3: [00:23:30] Yeah.
Speaker 1: Yeah. No, I didn't want ma I've seen a lot of women, you know, hurt, hurt their self in different ways. They don't feel like they worthy of anything. Yeah. So I can understand that, you know?
Speaker 2: Yeah. And this is my last question, but first of all, I want to thank both of you for your transparency because the reality is, is y'all story will save somebody's life. Mm-hmm. There's somebody listening right now mm-hmm. Who feels like you do. There's a black woman who's afraid to tell her family mm-hmm. <affirmative> and tell her own children. Mm-hmm. [00:24:00] <affirmative>, there are people out there who are suicidal, there are people who are struggling on and off mm-hmm. <affirmative> consistently with depression due to this diagnosis. So thank you so much for your transparency. You know, you talked about, um, you know, people not knowing what to do with you and, you know, taking your medicine and that I appreciate your transparency about stopping your medicine. Mm-hmm. <affirmative>, you know, as it pertains to the medical field and the way that blacks have been treated in general mm-hmm. <affirmative>, you're honestly what a quadruple minority.
Speaker 2: You're, [00:24:30] you're black, you're women. Mm-hmm. <affirmative>. Mm-hmm. <affirmative> and you have hiv. So three, you're triple right. Right. So, so talk to me about the, the structural difference of healthcare at the time. And talk about like as black women, because we're saying there's still work to do mm-hmm. <affirmative>. How, how, how is that space filled in that void? You know, you said transitional housing but like, you know, 30 plus years ago, how is that different to now? And how, again, you're saying you take your medicine to choose to live, but continuing [00:25:00] to, to tell yourself that there is a reason to do so. What, what, what are those contrast in that space?
Speaker 1: Every day I have to kind of talk to myself and kind of get myself up and going because a lot of times I just wanna lay in the bed and I do so mm-hmm. <affirmative> just sleep. I wanna sleep it away, you know? Yeah. But it doesn't work like that, huh? Mm-hmm. <affirmative>, I, but the medicine, like I said, I, I'll take a little weekend breaks from it or I don't know why I do that, but I, it [00:25:30] is, you know, I just do it. I just get tired of dealing with the fact that I'm HIV v now I'm not just HIV but I have a AIDS doctor. Me too. And so that's something more chronic, you know, and dealing with and, but medicine and senior doctor and all that, I, I hadn't even, I haven't seen my doctor in a long time. I just started seeing her again last week. Wow. So I was, you know, I don't know how people deal with this in their own way, but I have to really kind of keep myself [00:26:00] close to God. Yeah. Yeah. You know, and I just be trying to encourage her mm-hmm. <affirmative> to do so because of, that's why I tell write a list. Mm-hmm. It may seem far, but write what you wanna do, what you wanna buy, what you just write it down where you wanna go. Mm-hmm. <affirmative> and I have traveled to it. I've been to Africa twice free and
Speaker 2: We love free
Speaker 1: Because I still volunteering for 30 something years and I do know that, [00:26:30] and I'm kind of tired of traveling now, but I still have three more places I want to go and I write that stuff down mm-hmm. <affirmative>. Yeah. And check it off as it come. And even when I have to do stuff I write down when I need to do 30 people. If you do one of those things, you've accomplished a lot. Mm-hmm. <affirmative> and stop thinking I'm failure that I did something to just do it. Mm-hmm. <affirmative> and I have to do it cuz it helps me to help myself in order to help other women and things. Mm-hmm. <affirmative>. So when most I be trying to get them to buy their own condo [00:27:00] and things. Yeah. Yeah. Because they, if I could buy in welfare, I say, what are they talking about? We can't buy this.
Speaker 1: Why you think you can't afford that? Yeah. Yeah. Just step out there mm-hmm. <affirmative> regardless how I might feel. Mm-hmm. Because I have those feelings about, you know, the in it is not gonna be ready cuz all this other stuff with the thyroid. Mm-hmm. <affirmative>, if they give me one more contraption, I think I'll just <laugh> my walker mm-hmm. <affirmative> and the things [00:27:30] and my uh, belt that I supposed to wear and then, then I just go mess my arm up and one more, another little thing <laugh>. So, and, and it just makes me feel and the C pap machine mm-hmm. <affirmative> diabetes. I said, what end does this? Please call God take me away <laugh>. And I love my bubble bath with Dr. Till. Yeah. And my candles. See you gotta do that stuff. Mm-hmm. <affirmative>. So period. Yes. Yeah. Self care I sure go to the doctor. I'm scared [00:28:00] to take that many breaks away from my, I have not ever taken a drug holiday. Scared to death. Wow. And I wouldn't tell nobody to do that. Mm-hmm. Because when this numbers start coming down mm-hmm. You might be, cuz I had too, like, I was diagnosed with AIDS in 93 mm-hmm. <affirmative> and I'm still, and my tcells has been like past a normal immune since like 1500 and waved in that area and that's and been undetected for over 20 years. Right? Mm-hmm. <affirmative>. Wow. Wow. [00:28:30] So that's why I keep it going, keep it moving and then I say, oh I got a shot. So that can't go nowhere now. <laugh>.
Speaker 3: That's amazing. Yes. I wanna say something I didn't expect to learn from you all as the, not as the person not identifying as a woman <laugh> in your room. I can speak for black queers, black msm, black men who have sex with men. One thing that we don't do probably a great job of is when we are in those spaces of depression or we're in that space of I just don't wanna take my medicine. Mm-hmm. <affirmative>, even as people who work in the field, we don't do as good of a job [00:29:00] as of reaching out to one another for support mm-hmm. <affirmative>. And so I'm learning something from you all and how that sisterhood is important. How important it is to have a person who, who empathizes, who has a shared experience, be able to kind of give you, you know, some wisdom and guidance and just be there for you.
Speaker 3: Mm-hmm. <affirmative>. And in that vein, first of all, I am proud of you all <laugh> for being able to overcome those barriers and for being able to be transparent about what those barriers still look like, right? Mm-hmm. <affirmative> and I'm glad that you are still here mm-hmm. <affirmative>, you know, through all those moments. And because [00:29:30] you're here and you have so much wisdom mm-hmm. <affirmative> again, there are so many black women who when they see these news reports that says black women are the new face of the, of the epidemic, um, what would you say to that woman who is watching right now and wondering imagine if Prep was out right <laugh> at the time before your diagnosis, most of us probably wouldn't have, have, have even thought that we were, you know, eligible, we were people who should have taken it. What would you say to that black woman who's watching right now? And like, prep is for gay men, prep [00:30:00] is for trans people, prep is for, what would you say to them about being able to take kind of those precautions?
Speaker 1: You wanna go with that first? Well, you know what, lemme say this, but by me not taking my medicine, my T-cell went down to 2 26 mm-hmm. <affirmative>, but my viral load is undetectable. One, it had been a long time. So it kinda weighs, you know. Yeah. It keeps things going. So I, I, like I said, my goal is to teach women how to love yourself. Mm-hmm. <affirmative>, you know, and [00:30:30] teach them how respect for their self don't fall for the Okie, do you know what I mean? Mm-hmm. <affirmative> don't let no man or woman put you in a position that they treat you bad because you HIV v positive and you stay there because you don't wanna venture out and tell anybody else.
Speaker 3: Yeah. And if you're negative is would taking prep to prevent h i v be a form of self life and self-care?
Speaker 1: Yeah, absolutely. Messing yeah.
Speaker 3: Hurt. Mm-hmm. <affirmative>, what are your thoughts? Be
Speaker 1: I ain't too coach with that prep cause they can [00:31:00] probably gimme permission to go have bad behavior and all I have to do take a pill to fix it. Right. And learning to learn to be alone but not alone. Mm-hmm. <affirmative> being able to do things by yourself that you don't need other people as a matter of fact to define who you are. Mm-hmm. <affirmative> and you don't need to have somebody with you to carry on. Just like I the teddy bear, I used to give my women a spoke group Teddy bear. I said hug them, they won't talk back and they won't leave [00:31:30] you <laugh>. So, and that's where I get it is okay to be alone opposed to being lonely. Mm-hmm. And it's all right both ways, but it ain't worth your love for yourself mm-hmm. <affirmative> Yeah. To hurt yourself like that.
Speaker 2: Yeah. And that just honestly shows that stigma is, it's
Speaker 1: So,
Speaker 2: Is so real.
Speaker 1: Yeah. It's still there.
Speaker 2: Yeah. Yeah. Yeah. You know, I think again, you ladies have lended an incredible lens for people to [00:32:00] see black women in what black women living with HIV look like. So again, thank you guys so much mm-hmm. <affirmative> for sharing your stories. I think y'all's transparency is really gonna help a lot of people, especially young women listening mm-hmm. <affirmative> who might be where you were Right. 30 plus years ago. Yeah. So again, thank you ladies so much. Let us know where we can get in touch or follow you or get in some of those organizations that y'all help. We'll stay
Speaker 1: Here. Yeah. I, I work with Hosta too. Yeah. Okay. Okay. And uh, who else? I I'm want Women Walk. I'm on so [00:32:30] many people boards and carrying on and the wise buddy <laugh>. Okay. Uh, but I go to help the other women do what they need to do for themselves. And don't think you can't.
Speaker 2: Yeah.
Speaker 1: It's not in my vocabulary. Mm-hmm.
Speaker 2: <affirmative>. Mm-hmm. <affirmative>, what about you? Where can we, uh, go to learn more?
Speaker 1: You can reach me on no text or email or my phone. It's not hard to, if you just call, I accept calls 24 hours a day, so, okay. You know, I, that's how I used to work. I mean the work was so [00:33:00] intense that I had to have my phone on 24 hours and you know, when you be the boss, everybody comes to you, you
Speaker 2: <laugh>. Yeah. Yeah. So you're used to the community outreach. Yeah. I think there's some ladies listening who, who will definitely grow a lot talking to you. So thank you guys so much for coming on today. Thank you for being a positive voice. For sure. Listen, we also have our own set of resources. Malachi, I plug that website cuz you know I never remembered
Speaker 3: <laugh>. Our website is dcendshiv.org/podcast [00:33:30] and we asked for the real conversation. We talked about wanting to hear people's real stories and that's what we did today, right? We heard real stories and this is why it's important for us to hear back from you to get feedback. We need some little, some talk back for you. So when you go on the website, please complete the survey. Let us know what you thought about today's episode, let us know where you are, if you are HIV positive and where you are with adherence, where you are with emotional feelings, where you are with being able to, to kind of navigate your own, your own way through staying [00:34:00] in care. We wanna definitely hear from you and also provide resources. So please again dcendshiv.org/podcast. We wanna hear back from you. Me and Leo will be waiting. Leah tell 'em to use the hashtag.
Speaker 2: Yes, of course. And there is a hashtag that we want you to use. Hashtag Positive Voices. Let us know on social media sound off about this episode. Let us know what you think and if you connect with these ladies stories, please let us know. Listen, that will do it for this episode of Positive Voices. We thank you again for tuning in for listening. Make sure you download, subscribe, and we'll see you next time.
Speaker 4: [00:34:30] Positive Voices is produced by Chris and Tiana. Our production team is led by C3 Creative Agency.