Kimberly Seals Allers  

Welcome to Birthright, a podcast about joy and healing in black birth, where we share positive birth stories of those who have lived out their birthright and help heal those who have been denied it. My name is Kimberly Seals Allers And I’m the founder of the Irth app and your host. This is where we celebrate the ways we find joy in our birthing experiences, and ultimately reclaim our birthright.

Today we are traveling to our Mother continent to take a unique comparative look at birthing with a HIV-positive diagnosis, both in Uganda, as well as in St. Louis, Missouri here in the U.S. Our goal is to dig deeper into finding joy even with the stigma and social shame of HIV. Across the globe, Black people have been hard hit by the HIV crisis. Globally, an estimated 1,400,000 HIV infected women give birth with almost 330,000 babies becoming infected with HIV annually. About 91% of these women reside in sub-Saharan Africa.

Here in the U.S, where Black people are only 12% of the total population, we are 40% of the 1.2 million Americans living with HIV in the U.S.. For Black women, the statistics are even more alarming. Black women accounted for nearly 60% of all new HIV infections despite making up less than 15% of the total U.S. female population. And here in the U.S. for Black women, 91% of those infections resulted from heterosexual contact, followed by 8% from injection drug use.

Clearly, something to talk about.

Our guests today, Teddy from Uganda, who is a mother of  a 7, 5 and 3-year-old and Mary who gave birth in St. Louis, Missouri seventeen years ago are two HIV-positive women who had positive birth experiences and HIV-free babies and ultimately pushed past the obstacles, stigma, shame from church communities and villages around their HIV status to reclaim their birthright. 

Teddy Atim  

My name is Teddy Atim. I am a mother living with HIV. And I have three HIV free children. And this is my birthright story.

Okay, it was in the year of 2013. When I had just completed my senior four, and then I got a boyfriend who got me pregnant. And then later on in 2014, I went for my first antenatal visit with my partner. When reached the health facility, as it’s routine in Uganda, that every pregnant woman has to go through an HIV test. So we went through the process, and we’re both tested for HIV. After being tested for HIV, the results were given to us. And then unfortunately, my results tested positive. Waiting for my spouse tested negative. I was so much devastated. And I felt like I had reached the end of the world, because I couldn’t imagine living HIV positive with a man who is HIV negative. Because first of all, when I got to know about my results, I had a lot of stories in my mind. The questions, I could ask myself a number of questions that I really couldn’t answer them my by myself. Questions like, what would my spouse think about my HIV status, since in our community, being HIV positive was a result of being a prostitute. So I had a thought of my husband feeling unfaithfulness from me because of my status. And then I also feared that my marriage could be broken because of the discordant relationship. And then I also had a fear about my children, or my child that I had, by that time, the pregnancy I had, I had questions like, what would happen to my unborn baby? If I thought I’d given birth, I thought my child would also be HIV positive. So I lived in a state that was really so painful. At that time, I had a number of questions that I could ask myself, and I didn’t have answers for myself. And then later on, we were linked to the mentor mothers who gave me support by giving a living example of themselves. By then, I met a mentor mother who was a site coordinator, who gave me a testimonial of herself giving birth to four children who are HIV negative. And then they also helped me support my partner, educate him about HIV, and also encouraged him to test after every three months, then I later on I came to the facility during but I gave birth at the facility. I also continue taking Well, my treatment as I was being directed by the health workers. And then later on, I gave birth to an HIV free baby. That was the beginning of happiness.

Kimberly Seals Allers 

For over 20 years Mothers to Mothers has leveraged one of Africa’s greatest strengths, its women, toward the work to end AIDS. Through their mentor mother model, Mothers to Mothers employs local women living with HIV as frontline workers, empowering them to unlock life changing results for their communities and themselves. Mothers to mothers has impacted over 13.5 million people across 12 African nations and created more than 11,500 jobs over the last 20 years. Teddy is just one of their success stories.

So, one of the greatest challenges about living with HIV is not the actual management of the disease, per se, but the social stigma and shame that comes with the diagnosis. Did you experience this in your village? 

Teddy Atim 

When we reached home, the health worker had some connections with my mother in law. So she disclosed my status when I had not yet known that she disclosed. So when I reached home, after like, one month, when we were going for another visit, my, my mother in law had already known about my HIV status. So it was not really easy for me, because she moved around the community disclosing my status. When it would reach time for eating, I couldn’t eat with them together. So it was really a challenge at first. She could even advise my husband to take another wife since I was HIV positive. And they talked a lot of things like “that woman can die at any time.” So it was really so challenging to me. However, after meeting mothers to mothers…through mentor mothers, they continued supporting my family, and educating them about HIV. They educated them that living with HIV is not the end of life. So and then the community mentor mothers continued visiting my family. Every month, they could come like three times, educating, and then also supporting my family and also supporting me and my spouse. They had to let them understand that living with HIV is normal. I had to educate them, and then let them know that someone who is HIV positive has an opportunity in life. She can give birth to HIV for children. If I told that they lived in a discordant relationship, they still have chances of continuing in a discordant relationship. How by a pregnant by a mother who is HIV positive? Adhering well to her treatment, one can continue living in a discordant relationship. And I could give myself as an example. So my community got educated.

Mary Harper-Holly

Hello, my name is Mary and I am the mother of Farah, the founder of Pay It Forward Projects and this is my birthright story.

As far as stigmas go, I am the fifth of six children born to a COGIC, pentecostal bishop and evangelist. So there are certain stigmas that definitely come with being a PK for one. And then on top of that, being a single black woman, a single black mother, and then the stigma of course, of being HIV positive. So there are quite a few stigmas that I have had to deal with, prejudices and assumptions. And just being able to live through those, work through those, and staying positive, has been challenging, but it’s been rewarding, it’s been rewarding at the same time. And at the end of the day, the best reward for me is my beautiful baby girl. So it has all been worth it. I was diagnosed with HIV in 2004. And that was coming out of a relationship with one partner, my childhood sweetheart since I was 11 years old, my high school sweetheart. We were together until I was 29 years old, the only person that I ever knew. But society doesn’t care about that when you say that you’ve been diagnosed with HIV or AIDS, you know. We are prone to automatically assume the worst about the person and about the situation. And that was not my case. It was actually simply a matter of infidelity. And it was an emotionally, mentally and unfortunately, at the end, an abusive relationship, but I had to make the choice to, to leave that situation. And after doing so, after finding out that I was HIV positive, that was the first time I dealt with a bout of depression, and dealing with depression and anger, and, you know, just all kind of emotions that are going, you know, through your head, through your mind, when you receive that diagnosis. It’s an experience that I wouldn’t wish on anyone. So I’ve dealt with a lot of depression and anger and lashed out and took on a lot of reckless behavior. You know, to be honest, a lot of reckless behavior. But the beautiful thing is, you know, of my faith, and my faith and my trust in God. And I can tell you that in my situation, God chose to bless me in my mess. You know, and for me that was because all my life, I had been told that I cannot have children. I had a miscarriage with my partner early in life, I was 17 years old when I had a miscarriage. And as a result of that, I had been told, you know, all of my adult life that I could not have children. So that was not something that I expected to be in the cards for me. And so to find out that I was pregnant, now that I’m HIV positive, you know, I had a choice to make. And my choice was to either continue to wallow in self pity, or to accept this, you know, miraculous blessing and do what, you know, I needed to do to make sure that my baby had the best chances of coming here happy and healthy. You know. So when I think about my experience, one thing that sticks out to me is my mom, and that’s when I called her and I told her I was HIV positive. And I was like, oh my God, I’m gonna die, I didn’t know anything about it, you know, and she told me, you know, quit crying, and accept your part and put your big girl panties on and bring me a happy, healthy grandbaby. And let’s just do what we need to do. And so that’s what I made up my mind to do. And my relationship had been over for about six to seven months at the time that I conceived. And I can tell you that every day for that six or seven months, I cried, you know. Every single day I cried. I was angry with myself. I was angry with everyone around me. I didn’t want consoling. I didn’t want encouragement. I just kind of wanted to wallow. But the moment, you know, I found out that, you know, I was pregnant, and that I was going to have this child, I made up my mind. I cried my last tear, you know, over that situation. And that, in order for me to make sure that my kid was happy and healthy, I had to put that behind me. And I needed to make sure that I surrounded myself with people who loved me, with people who supported me and encouraged me, and I needed to educate myself. So that I could do the best that I could do for my baby. And so that’s what I chose to do. 

So, the steps for me were, at that point, I had an infectious disease doctor. And so before I consulted an OB/GYN, or anything, I went to the infectious disease doctor, and I let them know, Hey, I took a positive pregnancy test, I have not seen anyone yet. Before I get my hopes up high, take a look at my numbers. And tell me, what are the best odds that I have for bringing, you know, a healthy baby into this world, because I had a decision to make at that point. For me, my decision was, I simply was not going to do it. If you know, the chances of me having a healthy child were not feasible. Because I watching the media knew about different children at that particular time, this was about 18 years ago now. But, you know, quite a few children being born with HIV, you know, and, you know, while they were learning to thrive, they were still dealing with sickness or, you know, having to, you know, deal with that stigma of going to school and being HIV positive things like that.  And I knew that I was not going to put a child through that. So the first thing for me was to find out what the odds were, what are the numbers saying was, what are the statistics, so that I could make a decision on whether or not I was going to have the child, because I believe in a woman’s right to choose. And, you know, for me, I was not going to do that to my baby. You know, some people may say it’s selfish, some people may say this, that or the other, and that’s okay. That’s okay. But it’s a decision that, you know, was between me, and my God, you know, and I knew that I was not going to bring a child into this world to have to deal with that hardship. So that was the first step for me, is talking to my doctor about it. And so once my infectious disease doctor, went over my personal health care numbers with me and let me know where my viral load was, where my CD4 level was, and things of that nature, and reassured me that it was, you know, a 95.5% possibility that I can have a healthy, happy, healthy baby, then I decided to, you know, move forward. So my infectious disease doctor actually referred me to my OB/GYN who they knew or worked with moms in that situation. And so I connected with the OB/GYN that my doctor set up for me, and she was great, she was great. She was, you know, awesome, walked me, you know, through each and every step. And we went from there.

So my journey was different, because I took a blood test every week. They closely monitored, monitored my CD4 count and my viral load. Because I wanted my CD4 count to go up, you know, which is my white cell count. It was important for those numbers to come up and for my viral load to come down. And so at the time that I had been diagnosed, when I was diagnosed with HIV, I was one point away from being diagnosed with full blown AIDS att the time that I found out about it. Literally one point away. But my doctor immediately started me on a regimen of medication. And that regimen began to bring my viral load down, and began to bring my CD4 count up. This was prior to my pregnancy. And then once I became pregnant, the medication that I was on was not good for the fetus. So they had to change my medication. And I was very, very sick. I was very sick. But I didn’t care. You know, because if that’s what I had to go through for her, then I was willing to do that. So my first and second trimester were very hard for me. The basic, or the traditional pregnancy symptoms of the, you know, morning sickness and the stomach cramps and everything, to the 10th power. To tenth power. It was rough. It was, it was rough, you know, but necessary. So once I got into my last trimester, I tested rather frequently, they drew blood rather frequently just to kind of monitor my numbers throughout my entire pregnancy. And by the time my daughter was born, I went from, you know, having a viral load that was in the 1000s. And a CD4 count of 201. 200 is AIDS status, or it was at that point, my viral load my CD4 was 201. So had it dropped one more point than I would have been categorized as full blown AIDS. And so at that point, I started to see the numbers tittle tattle you know, and my CD4 count went up, my viral load came down with the medication that the doctor had me on, and doing what I needed to do, I was able to have my viral load at an undetectable status by the time my daughter was born. And she’s 16 now, about to be 17-years-old. And I have been undetectable ever since that time. 

Kimberly Seals Allers 

Wow! What a journey! I’m sure you are looking back thinking of how far you have come. 

Mary Harper-Holly

At the time that I was diagnosed when I walked into that office, I didn’t know anything about HIV or AIDS other than what I saw on TV. You know, so for me, you know, what I saw on TV was sick people dying. You know, I saw Philadelphia, you know, I saw the movie, you know, where the man died. I thought, you know, no, that’s white gay people stuff. No, it’s not. You know, you know, it was a misconception for me, but there were so many people who thought like I did, you know. And, you know, I thought it was a death sentence. You know, I thought it was a death sentence. I was sitting trying to figure out, oh, I gotta get my life insurance together. Who I’m gonna leave my house to? What I’m gonna do? You know, and my doctor said to me, when I was diagnosed, and I’ll never forget, my primary care doctor at the time that I was diagnosed. And I went, oh I was just crying, and I was laying all on the table. At that time they called you in and told you in person. And I’m like, Oh I’m gonna die. And I’m gonna  be my momma first child to die. My momma gonna bury me, and she said, Ms. Harper, you have better chances of going out here and getting hit by a car, then you do of dying of HIV or AIDS today. She said, now had you been diagnosed, you know, 10 years from now, even 10 years ago, or even five years ago, that might have been a possibility. She was like, but look up and live, honey. She was like, because the the science and the medication is so much more advanced. And it was, because what I heard, or what I saw was, you know, people having to take 15 and 16 pills, three and four times a day, you know. And when she told me, you take one pill, once a day, at night, and that’s it. And I was like, What? What are you talking about? I see all these people on TV, all these colorful pills, all this stuff?  She’s like, we don’t do that no more. We don’t do that anymore. You know? And so that’s all I’ve ever taken. One pill. One night, you know, every day. Do I like taking one pill one night, every night? For the rest of my life? No, but I’d rather be alive and take that one pill, you know. And even in this 16 or 17 years, medicine has progressed. So, to the point where I’m actually in the process of changing my regimen. And going from that one pill, you know, every day, to going to a shot once a month. You know, once a month, you know, that has been tested. You know, FDA approved. You know, because that’s the other thing, I want to know who’s approving this.

Kimberly Seals Allers 

Well, there have been some incredible advances on the disease management side, both for HIV and AIDS. But when it comes to the stigma and shame and the isolation, I’m sure it can feel like we are right back in the 90’s. Where did you face the biggest stigma and how did you deal with it? 

Mary Harper-Holly

So, for me, the stigma came primarily from my environment. It was really more so of an anticipated statement, or an anticipated prejudice, you know, from what you hear, in society, really. And just wanting to make sure that I didn’t fall victim to that. So I went into this with a certain level of defensiveness for myself, because I was determined not to let anybody categorize me, or for anyone to, any physician to base the level of care that they provide for me, based on my sex, based on my race, or based on my diagnosis. I just, I’ve always been the type of person that when it comes—because I am in the medical field, I believe that our physicians should be held to a certain expectation. And, unfortunately, in so many of our African American communities, our people, male and female, are not educated on their rights. They’re not educated on what to look for, or what to listen for, you know, and so often is because we just do the so and so told me this, or so and so told me that, you know. And there is a saying that says, our people, you know, fail for lack of knowledge. You know, our people perish for a lack of knowledge. And so, you know, I always felt like it was important to arm myself with education, you know, with the facts, with the true black and white, you know, of it all. And so that’s what I aim to do. I can’t say that I particularly, that I know of, experienced any prejudices or stigmas. And I think that’s because I knew what to look for going into it, you know. And I knew how to arm and prepare myself going into it. And a lot of people don’t know how to do that, you know, they don’t know how to do that, you know, for so many reasons, you know. Whether it be educational reasons that they don’t know or societal reasons that they know, don’t know, you know, depending on you know, what communities they come from, or what societies they, they don’t know. And so I believe that the biggest thing is to educate yourself, arm yourself with education. 

Teddy Atim 

The misconceptions that are still there, especially in very, very rural areas, those does deep remote areas, is that people still believe that every pregnant HIV mother gives birth to HIV positive children. It’s still a misconcept in my community. And then there is also a belief that living with HIV is really like a misfortune. And yet it is not. There is also a misconception where people believe that someone who is HIV positive was a prostitute before. That was how she acquired the virus. However, mothers to mothers is doing a big work in Uganda. As far as education is concerned. Yeah.

Kimberly Seals Allers 

For more context on this issue, I reached out to the Afiya Center, which was established in response to the increasing disparities between HIV incidences worldwide, and in their words on their website, quote, for extraordinary prevalence of HIV among black women and girls in Texas, unquote. Given their long standing presence and commitment, we spoke to Helen Zimba, the HIV programs manager at the Afiya center. Helen is a Dallas-based international HIV and reproductive justice leader. Her professional background encompasses both business management and communications, as well as extensive experience in community health. She has also served on the grant review committees for HERSA, the NIH, and as a board trainer for the AIDS Alliance. But she also has a very personal story.

Helen Zimba

There was not much education around. I did not know anything about HIV, myself, so did the doctor, they did not know what to tell me. And I didn’t know how to expect. As a result, what the doctors knew about is to tell me about prevention, for which didn’t, you know, help me because I was already positive at that time. So I felt like I was robbed a little bit, because instead of talking about my health being, and the child that I’m going to bring into the world, they just talked to me about not having this child. It was very stressful, because instead of me being excited, I was worried every time I had a doctor’s visit. It was just horrible because of a push back. My OB was reading through the book on what was going to happen to me or my baby. And because I didn’t have any resources, I didn’t know where to tend to, I kept going there. 

Teddy Atim

Because in Uganda, once you’re full HIV status, once you’re full HIV positive, the first thing is that you’re linked to a peer. So when I was linked to a peer, that was the beginning of the health workers support, because they have frontline health workers. So they supported me a lot. As I am also supporting my fellows at the moment, those peers of mine were HIV positive. And then also, the health worker supported me so much, especially the midwives, because they continued educating me on the importance of taking my drugs well, and they also encouraged me to deliver at the facility. So I really had enough care from them. Because they showed us love. They showed me love. They showed me care. And then they really have supported my partner so much. They were really so much supportive to my family. 

Teddy Atim

Sometimes when I’ve taken long, during my first child, when I’d like missed my appointment, they could also come in and follow me up to my place, my home, and then also support me from home. So that was more than showing love to me. Yeah.

Kimberly Seals Allers 

Did you know that less than 15 minutes of your time can help make black birth safer for us all? Irth as in the word birth, but we dropped the b for bias, is the first of its kind nonprofit rating and recommendation platform for black and brown women and birthing people to find and leave reviews of their OBGYNs, birthing hospitals and pediatricians. My name is Kimberly Seals Allers, and I created the Irth app because I wish I had it when I gave birth. I learned the hard way that reading the doctor and hospital reviews at mainstream sites, which were overwhelmingly from white parents, was just not helpful to me as a black single mother at the time. Irth is by us and for us. In less than 15 minutes, you can complete the structured review of your birthing experience. Also, tell us about your prenatal, postpartum, and newborn care, so we can inform and protect each other. We turn Irth anonymous reviews into meaningful data to work directly with hospitals, payers and providers to improve our care now. When it comes to safe, respectful and dignified care, we got us. Download the free Irth app now and leave your reviews. Follow @TheIrthApp on Instagram, Facebook and Twitter. 

Kimberly Seals Allers 

And we know that the doctors, the providers, can play an important part. 

Mary Harper-Holly

I was blessed to have really good physicians. I was in St. Louis, Missouri at the time that I had my daughter. I was blessed to have really good physicians. I had an HIV infectious disease doctor that worked right with my OB/GYN. I did not rely solely on the information that they gave me. I did my research. I communicated with other mothers, nurses. I had to educate myself—everything from, you know, knowing what my viral load was, my CD4 count. I was a diabetic at the time. So making sure that, you know, I kept my diabetes under control. And not only for myself, but knowing what effects it was going to have on the child that I was carrying. Right down to any medicines that they prescribed, I wasn’t just taking medicines because the doctor told me to take it, you know. I wanted to, you know, read and find out about that medication, if I could. Any long term effects, things of that nature, because I always had that phobia that, you know, you turn on TV and you see a commercial for, you know, allergies, but then it’ll tell you, Hey, you might be prone to depression or heart attack, diarrhea, things like that. So I’m like, okay, you know, let me make sure that I know what I’m putting into my body, so that I know what I’m putting into my child. So the main thing, for me, was making sure that I was healthy so that she could be healthy. And that consisted a lot of my mental health as well, you know. I believe that you can pass something to your children that are mental and emotionally damaging, you know, before they even get here. So, for me, it was very important for me to have prayer, to have meditation in my life, to get my rest, to avoid negative people, negative situations and circumstances. And that’s what I did. I just made everything that I did about her, you know, about giving her the very best of me, you know, during that period, so that she could be what she needed to be. 

Kimberly Seals Allers 

Teddy, take us to your birthing experience. 

Teddy Atim  

Oh, well, really, that today I had worked up to because of Friday, I had worked up to around four. And then I went back home. When I went back home on Saturday. And then on Sunday, Sunday around midnight, yeah, I began feeling the labor pains. And then I let my partner know about it. Then after knowing about it, he had to escort me to the health facility. We got cycle and then he escorted me to the health facility. So when I reached the health facility, I got the midwife who always worked with me. And then by then, I was already a mentor mother. So they really handled me with enough care. They showed me love. Whenever I could feel like the pains are coming, they’re always by my side telling me Teddy just be patient. The right time is coming. So they really showed me enough love. Then later on at around seven in the morning, I pushed my baby properly. 

They really don’t have anything to reduce the pains. Only that may be when the child is almost like, the child is really almost. And then if maybe you don’t have enough energy to push the child, and then there they can support you. There is some medication they can put you on so that you can get enough energy to push the baby. But then they don’t have any treatment that they can give you to reduce the pains. No, they don’t have.

Then after pushing my baby properly. Then we moved out of the labor room, then after moving out of the labor room, I had to breastfeed my child immediately. Then after breastfeeding my child immediately, I was given a syrup for the baby. And then later on, we had to go home.

Kimberly Seals Allers

Teddy, tell us more about giving birth in Uganda.

Teddy Atim 

Okay. In Uganda, when a woman comes for delivery, her boki is taken off. When the boki is taken off, the health worker checks on her records, how she has been attending the antenatal services. And then after, if she was tested for HIV, that is the first step. And then the second step, she’s asked to lay on the bed. Then when she lays on the bed, she’s been checked to know how she’s progressing and then to know whether it is already time for her to push or she still has some time to push. So after telling you how it is going on, if you still have time, they can tell you to move around, do an exercise. You can walk around the maternity room just like that and then when, after sometime again you will be called back to the labor room. And then again, you’re checked. If you’re told the baby’s time to be pushed, and then lay on the bed, put your legs up, and then you push the baby. That’s how we do it in Uganda.

Kimberly Seals Allers 

So you were able to breastfeed? 

Teddy Atim  

Yes, yes, it is common in Uganda, because most of our people are vulnerable. And so they cannot afford the replacement method. And then with mothers who are HIV positive, you cannot mix to feed your child. Because you either decide, either you do the replacement breastfeed, the replacement feeding, or you do the exclusive breastfeeding. So most of our mothers do not do replacement, because of inadequate money or support, or they don’t have enough money to support the procedure. So most of them rely on exclusive breastfeeding in Uganda. And that’s what I also used for all my children. exclusive breastfeeding.

Kimberly Seals Allers 

Ms. Mary, tell us about your childbirth.

Mary Harper-Holly

And so that’s that’s where we are I had a normal childbirth, I did end up having a C section, of course, because that’s what they recommend for you know, HIV moms. I had a C section and the beautiful thing about it was the doctors had told me to anticipate that even though she would most likely not be HIV positive because of the medication that I was on and everything, that she would have antibodies naturally, because I did. But you know God is so awesome and He is so great that she didn’t even have antibodies. You know, she did not have a single HIV antibody in her. And that was shocking to a lot of my doctors. It was not shocking to me, because, you know, I put prayer on.I put prayer on her, but I followed everything that the doctors asked me to do.

Kimberly Seals Allers 

Teddy, what was your process for finding out the HIV status for your child? 

Teddy Atim 

After we had left the health facility, I was told to come back after one month and two weeks. That is roughly six weeks to come back for the first PCR, first HIV test for my baby, to get to know if at all by bad chance, my child got HIV during the period of pregnancy, because a child has chances of getting HIV during pregnancy, even when the child is in the womb, or maybe during the time of delivery. That was why the first PCR was taken off at six weeks. And then I also had to come back for the second test, second test after after weaning off my child. That was when my child was one year. I weaned off at one year, and then I had to take off a period of one month and two weeks. That is roughly a year. And then six weeks. And then I had to do the second PCR for my child to prove during that period of breastfeeding, did my child by any bad luck, get infected by the virus. And then she was HIV negative. Also during the second PCR, I was really so so happy when I got this results, because during that period of breastfeeding, it’s quite risky. But I thank God that even during that second chance, my child was HIV negative. And then I also had to do the third, I mean the rapid test. That is the final test at 18 months. So when my child was 18 months, they had to bleed for the rapid test. And also the results were HIV negative. I was really so so happy about the results. So that was how I got to know that my child is HIV free.

Mary Harper-Holly

Yes, ma’am. So I, that’s a blessing for me, you know. So after I—and the doctors were really, you know, kind of shocked and surprised at that, you know, but I, you know. There’s a song that says, whose report will you believe? And we believe the report of the Lord. So, I believe that is all coupled together, you know. I know everyone is not as faith-based or religious. You have different people from different aspects or, you know, different phases of life or whatever they may believe. That’s just my journey. That’s my truth. That’s my story, you know, is that I could not do anything that I did without having strong faith and having a supportive community around me. And my supportive community was small, because I had, I was very reserved with who I wanted to share my status with. So like I said, I’m the fifth of six children, and my mom and dad. And so, for me, my journey consisted of, you know, my mom and dad and four of my five siblings. Unfortunately, sometimes we all got that one.

You know, 17-18 years later, that’s still my secret that she don’t know.

Kimberly Seals Allers 

Wow, Mary as a PK, a preacher’s kid, I can only imagine what your concerns were around the response from your church community. Can you tell us a bit more about that? 

Mary Harper-Holly

For me, I come from what a lot of people in my age and before me deal with when it comes to church folks. And that is, you know, being a PK, there’s always a stigma that preachers’ kids are worse than everybody else’s kids, even though we right with your kid. Your kids are our partners in crime but you know, we tend to, you know, to get the slack for it. And so my family was from that traditional, “don’t tell,” you know, “this is our secret,” you know, “what will the church people think,” you know. Things like that. Being shunned by the church, you know, but what I found out, is that they’re human, too. You know. And that we are so uneducated in the church, because for some reason, we’re under this disillusion that, you know, because mommy and daddy have a connection, or a prayer life with God, that that makes us exempt, you know, from dealing with the consequences of our actions and our decisions, you know. And so many need to know that, you know, even in the churches. So a few years back, I made the decision not to hide my status anymore. And to specifically speak to church audiences, and young people in church, and letting them know that, you know, you cannot ride the coattails of your mom and dad’s prayers. Number one, you got to know the Lord for yourself, you know. Number two, you have to have a moral conscience. And you have to make smart decisions. 

Kimberly Seals Allers 

One of the things that has always stuck me and saddened me about Black women and HIV, and this is somewhat related to the church—is that 91% of Black women get HIV from heterosexual contact. For me, that includes far too many down low men who do not feel safe to come out and be free about who they are. And so for me, we do see the shame and stigma of LGBTQ+ lifestyles or even the stigma around sexual or gender fluidity, especially among our Black men, is critical to saving Black women. And Black women need to know that 91% of Black women who get HIV are getting it from heterosexual contact. That’s significant. 

For more context on this, we reached out to the Afiya Center, which was really created in the absence of programs to assist marginalized women living in poverty who are at high-risk of contracting HIV/AIDS. The Afiya Center in North Texas embraces a reproductive justice framework as the most productive means to tackling this dual epidemic. 

Kimberly Seals Allers 

Mary, what is it that you think black women need to know? 

Mary Harper-Holly

Because there are consequences to the decisions that you make, you know, and my decision was to—my unsmart decision was to love a man that didn’t appreciate my worth, and didn’t love me back. You know, and being accepting of his unacceptable behaviors, which ultimately, landed me in this particular situation. And so, I speak to young people in churches about, you know, taking accountability, taking accountability for your actions. Thinking about you know, what you’re doing before you do it, you know, and realize that, you know, Hey, it’s okay to be in love. It’s okay to meet somebody and love them, but know who they loved before they loved you. Find out a little bit more, or accept that they loved someone before they loved you and recognize that you have the right to ask questions. You know, because it can and it will ultimately affect your life. You know? 

Kimberly Seals Allers 

Absolutely so. And it could have lifelong implications. As we look at the devastating toll HIV has had on our communities and Black women in particular, what do you think we need to do as a community?  

Mary Harper-Holly

I think the number one thing that we need in our communities, especially the African American community, that is not just for the sake of HIV/AIDS awareness, but life in period. In the African American community, we need to teach accountability. We need to teach accountability. We make a lot of excuses, you know, in the African American community. Whether it be, oh, you know, the white man held me down from this job, or I can’t get ahead because of this or that. We need to take accountability. We need to teach our young people accountability. And how not to wallow when you make bad decisions. But how you can choose to learn from the bad decision that you made, so that the next time around, you can make a better choice. You know, and we need to know how the decisions that we make affect other people. You know, that is the biggest thing that we lack, in my personal opinion, in the African American community. We make a lot of excuses. We make a lot of excuses. And we do a lot of deflection, you know, deflection onto other people, you know, for other things, when, you know, we can’t change other people’s thoughts, or opinions, without giving them a different perspective. You know, how can I tell you that this isn’t the way to do things, or this isn’t what we’re about if that’s all I’m showing you? You know, you’re gonna go off of what you see. And you know, I’m from St. Louis. So, I’m from the show me state. I’ma believe what you show me, you know. So show me something different, you know, show me something different. And so I think that’s where it starts in our African American community. Number one, with education, we need to take accountability in educating our children and not just relying on the public school system, to do it public, private, you know, whatever. We need to take accountability with arming our own youth and educating our own youth. And I believe that that’s where it starts.

Kimberly Seals Allers 

Teddy, what do you see as necessary to move forward? 

Teddy Atim  

What we really need to do as black women who are living with HIV, especially, we empowered mothers who really have enough information about how to live positively with HIV, is that we really need to reach further, especially to those clients who still have the other fear about living with HIV. Those ones who are still stigmatized. We really need to reach them, and then educate them, support them, and then help them understand their HIV status, because there are some who are even still in denial. They don’t believe that they’re HIV positive. So we really need to use our experience, our life experience, to continue supporting our fellow women who are also living with HIV, like us. Because when we continue giving them this education, stigma is going to reduce slowly, slowly.

Kimberly Seals Allers 

The founder of the Afiya Center said it best to Ebony Magazine when she noted, quote, I want to see black people take ownership of HIV, yes ownership. And I don’t mean that in a negative or shameful way. But one that is about controlling our destiny. Because when one takes ownership of an issue, then they begin to put in place mechanisms to assure the best outcomes for that situation. Black people carry a disproportionate burden of HIV and have a shorter survival rate than any other racial ethnic group. Therefore ending HIV in the black community must become a collective effort and not a targeted one that only focuses on black gay men and heterosexual black women. We all need to be alarmed at what is happening to us, ending the divisiveness, demanding that policy leaders stop playing politics with our lives and continuing to advocate for ourselves. Because if we don’t save us, who will? Unquote. Ms. Helen, based on your expertise in this area? How far have we come? And quite frankly, how much further do we need to go?

Helen Zimba

We have come a long way, because now, even the providers that were not open to learning about HIV, they are doing that now. So pretty much every doctor that is willing, they know about HIV, and how to treat women living with HIV. And what has also changed now is that women living with HIV have found courage, have the freedom to speak up, because they’re learning more about HIV themselves. We’re learning more about HIV. So we are speaking up for ourselves and others, to make sure that the barriers that we encounter are not there. Now we do have, we know that we have rights, to do everything, just like a person who is HIV negative can do, a person living with HIV can do.

Kimberly Seals Allers 

So, Teddy, if you had a woman sitting here, a person, in tears, in fear, perhaps even in denial, maybe even stuck in her shame, around an HIV diagnosis, what would you tell her? 

Teddy Atim  

Yeah, living with HIV is not the end of life. Living with HIV is not a crime. When woman is HIV positive, she has chances to live a healthier life and give birth to HIV free children. So, one should not be stigmatized, because he or she is living with HIV. It is not a curse. It is not a crime. It is a disease, just like any other diseases. So we need to learn to live positively with HIV. Then also adhere properly to your drugs so that you can live a healthy life.

And then the other thing is that what these women go through someone like I, Teddy, I had already gone through it. In fact, this is what gave me moral to accept my status. Because when the mentor mother told me that she was also positive, I knew that I’m not alone. I have someone who has also managed to live with this virus. And then this could encourage me, be like her. I also wanted to give birth to my HIV negative child through her experience, because I had in my mind, someone has already done it. So I could also do it. Yeah. So this, this is a bit different. It’s a different model. And it’s really so much support too, because what I’m going to support this client through, I have already passed through it. So I understand it very well. If it is about the side effects of drugs, I understand. If it is about how to do the exclusive breastfeeding, I understand it very well. 

Kimberly Seals Allers 

Ms. Mary, what would you say to that person?

Mary Harper-Holly

Be excited about your baby. If this is something that you want, and you want your baby, look forward to your baby. Look forward to your future with your child. And know that from conception you are your child’s number one advocate until they are at a stage and a point in their lives where they can advocate for themselves. So educate yourself. Know what your options are. Don’t accept no for an answer if you need a yes. Don’t expect a yes if you feel no in your gut, you know, pray. Feed positive thoughts into your kid, you know. Meditation, prayer, they are very important on your journey. Whether you are HIV positive, whether you have diabetes, or whether you’re in perfect health, when you’re pregnant, there are hormones and emotions that we deal with as women that can have us crazy, and all over the place. It can cause us to second guess ourselves. You know, it can cause depression, anxiety, things of that nature. So I would say to any woman who is HIV positive on their birthing journey, number one, the best thing that you can do for anybody is to first do what’s best for you. And that means take care of yourself, take care of your body, get exercise, get rest, take some quiet time, turn off the phone, you know. Don’t spend the next, you know, six to eight months, you know, worrying about the baby shower, you know, or you know, fixing up the room. You know, take time for yourself, for your mental health, for your physical health. I will tell any woman with HIV or AIDS, save you some money, put your money away, you know, for unexpected emergencies. Because you never know what our politicians are thinking. You never know what they’re talking about in the rooms of Congress that may or may not have an effect on you. So pay attention to what’s going on, you know, in the news, in the media, related things. I would tell any woman, there is a website that I recommend that was very helpful to me. It’s called www.thebody.com. And the body.com is a educational website for people with HIV and AIDS diagnosis where you can go and you can research any subject matter as it relates to HIV and AIDS.

Kimberly Seals Allers  

Thank you for sharing that incredible resource. We will be sure to post that link and many more in our show notes. Teddy and Ms. Mary, we close every episode of Birthright by asking the question, what is our birthright? 

Teddy Atim  

First of all, is love. They need enough love. Because when you’re pregnant, and HIV positive, and you don’t have someone who is showing that love to you, you feel stigmatized. And you can have thoughts like, Why did I? Why did I? How, why should I live with this virus? So when you don’t have someone showing you love, it becomes so hard. So every positive woman who is pregnant needs love from the community. And this love should begin from the spouse, and then from the family, and also the community. The other thing that these mothers need is care. They really need a lot of care—financially, spiritually, and then physically, because when you feel that someone is caring for you, just the only that makes you happy. 

Kimberly Seals Allers 

Ms. Mary, as a Black woman living in the US with HIV who had an HIV child, as a preacher’s kid, in a red state–what is our birthright? 

Mary Harper-Holly

You have the right to have a happy, healthy, thriving child. You have that right to have a beautiful birth experience. You have the right to enjoy it. The good, the bad, the ugly, for your entire journey. That is your right. You have the right to make the decisions that are best for you and your young king or queen. It’s your right.

Kimberly Seals Allers 

In the US, society attached so much stigma to Black women—as unwed mothers, or low-income parents, or even with an HIV positive diagnosis. I often say, do not confuse someone’s circumstances for their character. Those are two different things. But regardless of whatever stigma you may be struggling with, know that it does not define you and that you still can have a joyful and positive birth experience and you can still thrive as a Black mama and parent. That is your birthright. 

Kimberly Seals Allers  

Season Two of Birthright is funded by the California Health Care Foundation and the Commonwealth Fund. Birthright is produced by Motor City Woman Studios in Detroit with Kimberly Seals Allers as executive producer, and Alexa Imani Spencer as researcher and assistant producer. Our music is by Dantrel Robinson and we dedicate this season in his memory. And don’t forget to subscribe to Birthright wherever you get your podcasts. Give us a rating and review if you like what you hear. Find episode notes and learn more at www.BirthrightPodcast.com. And don’t forget to like and follow the Birthright podcast YouTube page for exclusive videos and extras. Follow at @iAmKSealsAllers on Instagram, Twitter and Facebook and please support our Patreon account. Together, we are reclaiming our birthright, one story at a time.