Since the beginning of the HIV epidemic, women have had to fight for recognition as a group of people living with HIV in the U.S. They’ve also had to fight to be remembered—which is why there’s a critical effort underway to document the lived experiences of women in the HIV community through oral histories. Oral histories not only enrich our understanding of the HIV epidemic; they also go a long way to correct assumptions and stereotypes about people living with HIV, as well as the larger HIV community.
I’m Still Survivingis a collaborative digital and print exhibition that launched in December 2020, featuring hundreds of excerpts documenting the stories of 39 women living with HIV in the U.S. These stories illustrate, in minute detail, the women’s collective experiences—illnesses, violence, and loss alongside joy, growth, and success.
The I’m Still Surviving project was led by Jennifer Brier, Ph.D., a professor of Gender and Women’s Studies and History at University of Illinois at Chicago, where she’s largely focused on U.S. sexuality, gender history, and public history. Our correspondent Terri Wilder interviewed her along with three long-term HIV survivors whose stories are featured in the exhibition:
Alicia Diggs, Ph.D., an HIV/AIDS activist, educator, and speaker and member of numerous HIV/AIDS advocacy groups, including the Presidential Advisory Council on HIV/AIDS and the National Community Advisory Board (NCAB) for the Women’s Interagency HIV Study (WIHS).
Cheri Harris, a mother, grandmother, minister-in-training at Haven International Ministries, and member of the women-centered HIV and sexual-health advocacy organization SisterLove.
Marta Santiago, a mother, grandmother, and member of the Women’s Interagency HIV Study’s Community Advisory Board (CAB) for 25 years.
This transcript has been edited for clarity and length.
I’m Still Surviving Started With a Chance Meeting
Terri Wilder: I am thrilled to be talking with you all today. To get us started, Dr. Brier, can you tell me about the history and inspiration for this project?
Jennifer Brier: Before I say anything about the history of the project, I just want to reflect on how excited I am to get to be in conversation with all of you. Those introductions of your lives tell me so much about how much we can learn from you about the history of HIV. I’ve been a practicing women’s historian for 20-plus years, and I’m just blown away by what it means to say that people can be both the tellers of their own history but also really the interpreters—and can share the significance of their lives with other people.
That’s actually in some ways the origin of the project. I spent a long time writing an academic history of HIV/AIDS in the United States. I was always troubled by the fact that that book and that work—while it definitely paid attention to the experiences of women, and it thought about feminism and why feminism matters for the history of HIV—didn’t address in any meaningful way the reality of women living with HIV.
I took a break from doing that historical work and created this project with my colleague Matt Wizinsky called History Moves. The idea of History Moves is that you can engage with people to make their own history and to make that history visible to the outside world.
We started with different ideas. We were going to create a bus that drove around the city and collected people’s histories and displayed them back. Then we really had a chance meeting with someone who you’ll probably hear about at different points from Marta, named Mardge Cohen, who’s a medical doctor. She was at Cook County for a long time and now is in practice in Boston. We have mutual friends. We met one day, not in Chicago, but in New York, and I said, “Oh, I’m running this project called History Moves.”
She said, “Oh, I run this project—I’m part of this project called WIHS, the Women’s Interagency HIV Study, and it’s about to celebrate its 20th anniversary.” I was like, “We should figure out a way to get those things together.” And so began what is now a five-year project of working with a group of women living with HIV, having them learn how to interview one another, doing the interviews, spending time looking at transcripts and looking at old photographs, and putting things back together again. It’s really a sort of incredible thing.
Along the way, we got some funding from the MAC AIDS Foundation to expand the project out of Chicago and into Brooklyn and North Carolina. That’s how we got here, in 500 words or less.
Wilder: The history is meant to be housed on a website. Can you talk about some of the features or themes on the website?
Brier: I should say, the history is housed in a lot of different forms. We’re finished with the one for Chicago. We’re very close to finishing the one for Brooklyn. And then we’re going to turn to the one for [North Carolina]. We make our own books that are for the women who have participated in the project. They’re a compendium of all of the stories from that particular city.
The idea was to produce those things that went to all 40 women. The idea was to produce that first. We did it in Chicago, and we had intended to do it all along for all three sites—to produce a traveling exhibition, a physical exhibition that would travel around to the different sites. We’d pack it up in boxes and mail it. Obviously, that has become no longer feasible because of COVID. So, we switched to the digital gallery. We’ve been working since the summer on recrafting the entire way that we were approaching this.
The one other important thing to know is that we do oral histories. We have the audio of those oral histories, and then we have them transcribed. We also use photographs. We have some of Cheri’s photographs, some of Alicia’s photographs, and some of Marta’s photographs. And the majority of the women in the project have shared their personal photographs. We also have photographs from historical archives that help us illustrate pieces of their stories.
For the digital exhibition, we’ve taken the historical photographs and the audio and the texts. We decided, for a host of reasons, to not use the personal photographs on the website because we wanted to maintain people’s privacy in this time of hyper-surveillance. At the same time, we wanted to really be able to feature their voices. The sound of their voices can be incredibly powerful, as well as the words.
The themes that are covered in that exhibition are largely of the women’s own making. It’s about what it means to center women’s stories in the way you talk about the history of HIV. It’s about what it means to pay attention to issues related to the family, whether it’s women who have family members who live with HIV or who have passed. It’s also about how, for example, the different kinds of institutions affect their lives, whether it’s schools or religious institutions or, more problematically perhaps, incarceration—and other forms of how institutions shape the women’s lives. What we’ve really tried to do is take these small pieces of excerpts of the oral histories and weave them together in ways that get you to think about these topics in new ways.
“We’re Louder Than Ever. We’ll Continue to Be Loud.”
Wilder: Alicia, Cheri, and Marta: How did you hear about this project, and, more importantly, why did you decide to take part in it?
Alicia Diggs: I heard about the project through the Women’s Interagency HIV Study. I made a decision to take part in it because, once I received my diagnosis, I felt like I’m a voice for those who do not have a voice. For other women who haven’t had the opportunity to speak up or don’t know how to speak up, I feel that it is my duty to speak up for my sisters.
For so many years, women have not received the respect or the rights that we fight for. There have been so many conversations about how women, particularly women living with HIV, have been silenced. Their voices have not had the opportunity to be heard. That’s where we come in—to stand for our sisters in solidarity and to make sure their voices are heard.
Cheri Harris: I was also interested because of the WIHS study. MichelleAnn [Joseph] came to me and said, “I need you to be a part of this. Your story is so profound. You need to be a part of this.” And I said, “OK.” Then I decided to do it mainly because sometimes when you’re dealing with such stigma—there’s so much stigma with this disease—you can feel alone and left out. I wanted to be a part of this so that the women would know that they are not alone, that there is someone who understands what they’re feeling, who understands what they’re dealing with—the ups, the downs, the highs, the lows. That’s why I agreed to do this project—so that these women know that there are women out there who understand and know what they’re going through.
Marta Santiago: I’m the same. I’ve been with WIHS since the inception in ’93, so when I came to the women’s clinic at that time, back in the late ’80s, it was something new. I grew out of being part of them. They became part of my family. Other than working with them, eventually, it was something that was normal. When an idea would come up, they liked to pass it through me because I was one of the folks that was working at the clinic and, at the same time, I had access to these new women who just got the news. They had no idea what HIV was all about. And, of course, that stigma of, “You’re supposed to die pretty soon,” was all around their heads.
My story is my story. I’ve shared it so many times—and again, this time, with pictures. I thought, “Oh, this is good.” But it really took me down memory lane, in a sense. The pictures took me to thinking again, “Look at the road that I’ve taken. Where did it lead me?” Dark places. But then the light was there.
I kept learning with the folks there. And this was another lesson. I figured, “Well, yeah. Somebody’s going to relate to this.” We’re all different, but we’re not all that different.
Wilder: Many, many years ago, I put together a women’s HIV timeline with a friend, a woman living with HIV. It was really inspired by the fact that in 2001, which was kind of labeled the 20th anniversary of HIV, everyone seemed to be releasing an HIV timeline for publication. I found that looking at these timelines, I was becoming very frustrated, because very few highlighted the contributions of women in the fight against AIDS: doctors, social workers, and caregivers. In particular, very few highlighted the contributions and the lived experience of women living with HIV.
Why do you think it is such a fight to center women in the history of HIV?
Harris: When HIV first came on the scene, HIV and AIDS, all you heard about was gay men getting this disease. So, all the focus went to them. They didn’t realize that women were being infected. And because of that, they didn’t focus on us. We were kind of pushed to the side because it wasn’t as much an epidemic with women as it was with men.
When they started to realize that it was infecting women, as well, it was like they were so far gone with the men, they didn’t really have what the women needed in order to push us into the forefront. Most people consider us women not that important, anyway, you know? “Stay home. If you weren’t out there doing all of that stuff you were doing, you would be all right. You shouldn’t be dealing with this disease in the first place.” There’s a lifestyle that is attached to this disease.
Because of these things, they just didn’t really focus on it. It was not that important because, one, not that many women were getting it. And then, when they realized that women were getting it and it was mostly through drug use, it was like, “Oh, well, then you get what you deserve.”
When they realized that women were getting it through having heterosexual sex and blood transfusions and things like that, it was like, “Oh.” But by then, I personally think it was too late to focus on how the women were dealing with this disease. Now, when it became such a great number of women with this disease, it’s like, “Oh. OK. Now we have to focus on them.”
Now they see so many people being affected by it, and it’s not because of a lifestyle that they’ve led, and being judged for the lifestyle that they’ve led. It’s women you’d least expect, because they’re not living a promiscuous or a high-risk lifestyle. Now they’re scrambling to put us out there. We realized that we have to put ourselves out there and help ourselves, and help each other deal with this disease.
Santiago: I’m thinking about all that you just said there, and I agree with a lot of it. My personal view here, again, is yes, they had the focus on the men. They had their research and studies to do. So, when it started coming out that the women were getting infected and it was an issue, a real issue, they had to get the folks interested and the medical teams interested in actually starting out again. “But now, you guys have got to look at women. This is a real problem here.”
Once that started, many women didn’t step forward because of fear or because of the way they were brought up. With many Hispanic women, their place was to be seen, not heard. “Take care of the kids. Do as I say.” A lot of that had to do with women being afraid to come out, and how they’d be ostracized should any family member find out.
In my case, you go through a little domestic abuse, a little sexual abuse, as a very young child. I was growing inside. I wasn’t blooming out.
Finally, when I did, there was a dark road that I took. Eventually, I found my value, but it had to be with help.
Now, I could say, there’s a lot of research on women. But is the spotlight on them? There is, but maybe not enough.
Diggs: I have to absolutely agree that, at the beginning of the epidemic, the focus was on men. It was completely on men. And as it pertains to women, women are always the ones who take care of everyone but ourselves. That’s been the case throughout history. Women have been on the front line of taking care of everyone.
As it pertains to HIV, many women did not speak up—and still, some don’t speak up—due to the stigma and rejection against women. With the sexual violence and violence, the traumas and gender oppression, the women just have not had the opportunity to have a voice. Now that we do have a voice, we have to force our way through, because, as has been mentioned, we are pushed to the side, like we don’t matter, like we don’t have feelings. There are so many things that we deal with—depression, hurt, and anxieties. But those are not taken into consideration unless we push forward.
So it takes many of us as strong leaders to say, “Yes. We are here. Hear us. See us. And you cannot do anything and make full decisions without the input of women.”
Looking at the history behind the fight of getting women centered, that path of the stigma and rejection has been a true-blue call, in my opinion, for women not being heard. But now, we’re louder than ever. We’ll continue to be loud. And we’ll continue to grow.
Challenging Assumptions Through Vulnerability
Wilder: The stories you shared as you were doing your oral histories cover topics such as violence, racism, substance use, homelessness, and discrimination—as well as resilience, victory, leadership, and the power of women. Why was it important to be honest in the telling of your story? And how can the way that you shared your story challenge assumptions about people living with HIV and, in particular, women living with HIV?
Santiago: I mentioned there was domestic violence in my first marriage. And there was sexual abuse. It started probably when I was 4. That does something, psychologically, to one. Either you’re all-out crazy with everyone or like me. I withheld. I was the wallflower. I was the quiet one.
The first time I came to the clinic, it was maybe a change. Maybe they could help with my life. I really felt that. I didn’t give them too much, but, at the same time, a little bit at a time, baby steps.
I slowly came out of my shell, simply because the women started a group. There was, “I’m kind of home. I’m here, where other women have had worse situations.” Yet, at the same time, we had the same situations. There was a feeling of belonging and getting the weight out of my system. It was a feeling of growth. I volunteered more. And before you know it, I was working there. After that, I went back to school. I had a son. So that was another big purpose for me.
Alicia, you were saying, we’re the backbone. We’re the ones that take care of family. I was a single mom. I had to take care of him. But I had to take care of me first to take care of him.
Things kept going, one positive thing after another. And with that, there were a lot of times that the women wouldn’t believe me, that I was positive. Those pictures show. There’s a picture of me pregnant with my daughter, my firstborn. I thought I was so miserable when my mother took that picture. I was probably about eight months pregnant. But now, I look back at it as just another growing spurt.
Would I do anything different? Well, maybe. But then, at the same time, I wouldn’t be where I’m at now. It’s a big difference from back then. I have my own place. I’m retired. I have wonderful grandchildren. I don’t know what I’d change.
So, again, those pictures, they’re different stages of my life. I see and I feel every one of them—the good, the bad, and the ugly. And I know that other women do the same.
Wilder: Alicia, why was it important to be honest in sharing your story, and what do you hope it will do, in terms of challenging assumptions about women living with HIV?
Diggs: My story helps other women to know that they do have a support system and they are not alone. It took me a little while to feel that way. I felt like I was in a little bubble by myself, though knowing that I was not the only woman living with HIV. But that is a feeling some of us have had.
In the very beginning, I felt so alone and so separate, so set apart and different from everyone. As I started to tell my story, it was important for me to do that because it helped me heal. I was healing, and I was able to help another person to heal.
I also think about the fact that we all have a story to tell. And while my story is one of many, it’s the story that belongs to me. It is my story. It is my truth. I can only tell my truth, and no one can tell it like I can tell it. My story, honestly, helped me feel like I was a part of something. As I started to tell my story and hear other women’s stories, it really made me feel like I was a part of a family. We have our family tree and everything, but when it came to HIV, getting connected to other women and hearing their stories made me feel like I belonged somewhere, and that I had big sisters, or little sisters, or additional mothers. It helped me feel more whole, if you will.
Telling that story, I’m able to tell the truths that I know, the truths that I understand, so that I can help dispel a lot of the myths, as they pertain to HIV, and the myth as it pertains to women being involved in research, and women being at the forefront of the table. That’s what I think about. My story is powerful. The next woman’s story is powerful. All of our stories are powerful.
And it may not be for everyone, but your story is for someone. I may talk to a hundred people and my story only impacts two people. Well, I did my job, because it at least impacted those two people who can make a change for themselves for the better, and who can spread the word. I count it as a win.
Wilder: And Cheri, why was it important for you to be honest in sharing your story?
Harris: I’m going to kind of piggyback off of Alicia. My story is somewhat different from a lot of people that I have come across who have been infected with this disease. But my story is someone else’s story. Somewhere, someone has had some of my experiences. And they’ve contracted this disease, and they’re saying, “Why me? I have done this. I have done that. Why me?”
I asked that question a lot. I also asked that question when MichelleAnn asked me to be a part of this. I’m like, “Why would you choose me to be a part of this? I’ve had no traumatic experiences in my life. I led a really sheltered life and now I have this. Why would anybody need to hear my story?”
In asking the question, my God told me that it was because of the fact that I lived the life the way I lived my life and still contracted this disease—and that needed to be known. There will be some other woman out there who had a similar experience in her life and still contracted this disease and feels like her life is over because of it, because she felt she did everything right and still contracted this disease.
And there are a lot of people who still are afraid of this disease, in spite of how far we’ve come with treatment. They still have those dark feelings telling them, “Oh, your life is over.” But for someone to hear my story, or read my story, it can give them hope for their life. I’ve been living with this disease for 26 years. I know there are many women who have been living with it a whole lot longer than I have. But when you run across the one who has the experiences you have and has lived with this disease for as long as I have, it gives you hope. That’s what I wanted to give to women: hope that their life is not over if they test positive. Their life will go on. They can still live a happy, healthy, fabulous life. Because that’s what I did. And that’s what I’m still doing.
Why Oral Histories Matter
Wilder: Dr. Brier, if folks want more information about this project, where can they go to learn more about it? And also, what are you hoping will be achieved by releasing this project to the world?
Brier: Well, just getting to listen to this conversation, I’m more and more certain there’s a reason that we’ve all come together. There is something so incredible about the way all of the women in this project speak the truth about their life. Some of it is very difficult, and there are traumatic and violent stories. But there’s a way they narrate and talk—and just to be able to hear their voices again in this context reminds me of what we hoped would happen. All of it now is finally coming to fruition, which is, when you put women into conversation with one another about their lived experiences, they tell you more about the history of something than you can learn from a lot of books.
Frankly, there is some tremendous research. And the WIHS study is an incredible body of research. It’s an entity that has produced hundreds, if not thousands, of research articles and other kinds of publications and grants and studies and sub-studies. But listening to the women talk about their own experiences is so critical to understanding what it means to say that if we are going to end HIV in our lifetime, we have to center the stories of women, because they’re the people who have been surviving for decades. The lessons that they can share with us are critical, and everybody needs to listen to them.
I think that that, for me, to come back to where I started, is naming a very simple truth: that people should be able to talk about and tell us about their histories, and that that history matters in the way that we understand the world we’re living in, as well as the one we may hope comes to fruition in the future.
If people are interested in hearing these three voices again, as well as the other 30-plus interviews and voices, the website is stillsurviving.net. You’ll also be able there to hear the audio interviews, as well as read the excerpts from the interviews. If you want, you’ll be able to purchase print copies of the book from North Carolina, Brooklyn, and Chicago.