On Feb. 12, Housing Works and What Would an HIV Doula Do? held a play reading and talkback at the Housing Works Bookstore Café and Bar in New York City. The play, entitled I, of Course, Was Livid, was offered in celebration of Love Positive Women, an international series of grassroots events that used Valentine’s Day as a backdrop to create a platform for individuals and communities to engage in public and private acts of love and caring for women living with HIV.
TheBody spoke with Elizabeth Koke, Theodore Kerr, and Valerie Reyes-Jimenez about the play and the importance of personal narratives and storytelling about women and HIV.
Elizabeth Koke is a writer, actor, and activist living in New York City. She’s a member of the What Would an HIV Doula Do? collective and is currently creative director at Housing Works, Inc.
Theodore (ted) Kerr is a writer, organizer, and artist. He’s a founding member of What Would an HIV Doula Do?
Valerie Reyes-Jimenez is a mother, grandmother, organizer, and activist who came to Housing Works in August 1991 as a client and is currently a full-time organizer in the Advocacy Department. She learned she was HIV positive in February 1989, along with her first husband, although she seroconverted in 1981 at age 16, when they first met. She applies her skills and experiences obtained throughout the years to advocate with and for others like herself who are living with HIV and AIDS, particularly in the fields of homelessness, addiction, and prevention.
Terri Wilder: What was the idea behind writing this play?
Elizabeth Koke: While writing is involved in this project, I think “writing” is a little bit generous, in some ways. I mean, the archival material that we were working with, written by women at the CDC [Centers for Disease Control and Prevention], who testified at the CDC in ’92 was so rich; it really lent itself to experiencing it in a live venue. That was kind of a jumping-off point.
Ted Kerr: What Would an HIV Doula Do? has an exhibition on view called Metanoia: Transformation Through AIDS Archives and Activism through the ONE Archives Foundation. And in doing that research, we came across the transcript that captured the testimony of women living with HIV who testified in front of the CDC to have the definition of AIDS changed. And that transcript was so—it just kind of like jumped out of the archives, and I was very excited to think about how we could transform this to a live performance.
I was inspired by a play called Is This a Room that was performed last year in New York, that Elizabeth actually encouraged me to see. And so, once I found that transcript, I was like, “Oh, Elizabeth, we could make our own version and educate the public about women, the definition, and the ongoing struggle to have it changed.”
TW: The play focuses on the changing of the definition of AIDS to include more women-specific illnesses. Why did you guys think this particular time in history was important to highlight?
EK: It showcases the way the medical establishment historically continued—and continues—to leave people out, in the way that research is conducted, in the way that funding is dispersed. And it was important to look back and acknowledge and uncover this part of the story about women advocating for inclusion in the AIDS definition.
TK: For me, we see so much cultural production about HIV/AIDS right now that looks back in history, and so much of it is focused on the amazing work coming from the LGBT community in New York, San Francisco, and a little bit in LA. And although that work is important, it’s only one sliver of the story. And when you tell the story about women and the definition of AIDS, you realize how much we still don’t talk about the past, how much AIDS history we still haven’t uncovered and [are] waiting to confront in the present, and how many women living with HIV now have actually helped fight to change that definition, and how that saved women’s lives and helped free up resources for people who were struggling.
And if we don’t tell that story now, then we have a hard time figuring out what activism has to do with the present and, kind of, the heroes that got us here in the first place. That, for me, was the spark for working on the script.
TW: In the play, it really focuses on testimony that was given to demand that the definition of AIDS be changed to include women-specific illnesses. And these women gave very powerful testimony.
This is a piece that you guys covered—that the CDC was really forced to hold these public hearings about the definition. Those hearings occurred in the fall of 1992. The folks that were there in attendance to testify were not only the CDC officials, but also doctors who were actually treating women living with HIV, and women living with HIV whose travel and accommodations were covered not by the CDC, but by the community, who knew that these women had to be present.
Valerie, you were at the public hearing. Can you tell me about what you remember about that day?
Valerie Reyes-Jimenez: Sure. I remember getting to the CDC. I remember it was hot. The place was kind of dark. And there were plenty of chairs. And there was a body of people sitting towards the front. It wasn’t—there weren’t a lot of people there. There were plenty of empty seats.
Before long, every seat was taken. There were people standing up. I remember hearing the testimonies. And the part that I remember the most was when they started to talk about—I think it was, as a matter of fact, when they turned off the microphone; when they turned off the microphone and we were, like, “Hey, what are you doing? Oh, no. Let her speak!”
It was really great, because I was traveling there with a group of women from ACT UP. And I kind of got my first real taste of what activism felt like, aside from, you know, just going to a rally or attending a march. And I knew what it felt like to disrupt a process, because it was really unjust.
TW: So, there were three women that you guys focused on—or, sorry, maybe two women. There was a woman named Wendy that gave really powerful testimony. And then there was also a woman named Mary Lucey, who—you just referred to—got the mic cut off as she was talking. In Wendy’s testimony, one line that she talked about really stuck out to me, that’s a common phrase that’s unfortunately still used today. She talked about that women are not some “special population. We’re an integral and vital part of humanity, equal and necessary.”
And so, I’m just wondering, why do you think government health officials still refer to women as, quote, special populations?
VRJ: Who the hell knows? I mean, why does government still use minorities, the word minorities, when the minorities are in the majority? I mean, who knows?
EK: It’s really pretty embarrassing, when you think about it. Like, people, they should be ashamed. They should be so embarrassed that that’s the word that they’re using. I mean, I don’t know. It’s like the patriarchy is alive and well, and it’s like the white men in charge just can’t imagine that anything different from them is as important, or people, or substantial.
TK: Yeah. I agree. I think it relates to what we as a collective do. And right now, the trending stories about HIV reflect white, cis gay men. And that means that most of the activism is around white, cis gay men.
We think that if we tell different stories that we’ll actually get different and better activism, and different and better action. So, we certainly don’t see this story as a minoritized versus white life story; we just see it as a story of HIV, as well. And so I think, hopefully, our cultural activism, our kind of holding space if the culture gets its head out of its ass, will be helpful.
But I think that Valerie said it best: Who the hell knows?
TW: Right. Wendy also spoke to intersectionality, which, Kimberlé Crenshaw’s scholarship was essential, you know, to the development of intersectional feminism. She’s really known for introducing the development of intersectionality, which is the theory of how overlapping or intersecting social identities, particularly minority identities, relates to systems and structures of repression, dominance, or discrimination.
The line that Wendy said that really kind of stuck out to me was, “It’s strange to live in a country that, first, due to my race, then my gender, my economic and now my health status, considers me unnecessary.”
So, really speaking to these kind of othering frameworks that, it sounds like, Wendy and probably a lot of other people during that time of women living with HIV felt completely erased, completely silenced. And I’m just wondering again, Valerie, if you can speak to that time. Was that the dominant narrative, that women were just not important? Black women were not important? Women of color were not important?
VRJ: Absolutely. I mean, a lot has not changed since back then, in respect to that, on the intersectionality of women, especially if you’re a woman of color, if you have an illness that is shaming, like HIV. They’ll just—let’s see; how can I put this? I’ll put it in my experience, right?
When I first found out that I was HIV positive, I was living in my mother’s house with my husband, my two children. We were pretty much living on top of each other. We were, quote-unquote, the invisible illness. You know? When I went to get help for someone who was HIV positive, I was not able to find any group or anyone that were able to help me, because I was not a gay man.
I specifically went to GMHC, and they straight-up told me: “There’s nothing we can do for you.” So, I really felt that I was on my own and I needed to do something. Because I was not prepared to just lay back and die. It was considered a gay man’s disease. So here I was, a straight mother who was married with two children, who didn’t fit into that—you know, I didn’t fit into that category.
So, it was really difficult. And it was when I came across Housing Works, who was helping people who were HIV positive who were homeless, where I kind of found a niche that I was able to kind of get into, and start finding some help, and seek some guidance.
But, yeah. It was pretty tough, and it was hard. Because a lot of the women that I knew that were having children were losing their babies. Their babies were dying. And that was a horrible piece of it that was hardly ever spoken of unless you were a woman who was HIV positive, who was pregnant or going to have a baby. It was like, “Oh, my God! How dare you?”
TW: Another woman who spoke, Mary, talked about that at the hearing—that this was not merely idle talk on “women’s issues. The outcome of this hearing will have a profound impact on my survival. And yet, a more offensive and revolting fact is that we die without even being counted, as if our lives didn’t mean anything. Don’t our lives count? Then count our deaths.”
One of the things that you mentioned earlier, Valerie, was that they cut off her mic in the middle of her speaking. Why did they cut off her mic?
VRJ: The only thing I can think of is that they got tired of hearing her. She passed through a lot of time. She was telling the truth, and the truth was really uncomfortable. I guess after a while of hearing this, it’s like, you know, “I don’t want to hear this anymore. So let’s just stop this.”
Same thing just happened to us the other day. We were over at the Medicaid, the MRT—[New York State] Medicaid Redesign Team II. Another group of people who don’t want to hear the truth in what’s happening. So, what did they do? They cut off the live feed. They’re uncomfortable with what we’re telling them. It’s the truth. The truth is uncomfortable sometimes.
TW: Yeah. So, it’s interesting. Because, as that part of the play, which—I was lucky I got to actually see it—when her mic got cut, the first thing I thought was, “Would they have done that if it was a man speaking?”
VRJ: Exactly. I don’t think they would have cut it off.
EK: Yeah. I doubt it. The one thing that is mentioned in the notes from the original archival, in the document, is that it was perceived that it was a critique of the Bush administration, a kind of pointed critique of the current administration, what led them to cut her mic. But, yeah. There’s a number of factors there at work.
TW: Yeah. She had some very, very harsh words as she was talking. She said, “I am appalled and disgusted at policy makers and bigots who argue that women will become hysterical and panic. Women demonstrate their ability to handle life’s truths on a daily basis. We are capable of making decisions based on accurate information. And the truth is that women with HIV are dying from AIDS-related cervical cancer at faster rates than men die from AIDS-related Kaposi sarcoma. It is asinine that the definition of AIDS has not kept pace with the change in our understanding of the epidemic, nor the epidemic itself.”
She was very strong and pointed in her comments to this panel of people that she was talking to.
TK: Yeah. And we should say that she and Nancy, who are actually partners, are still alive and doing the hard work. After the definition of AIDS was changed, Mary helped start an organization called Women Alive, and it provided support for women living with HIV in Los Angeles. And she keeps doing that work; it’s actually part of the talk-back with the Metanoia exhibition in, hopefully, February, early March in Los Angeles, to talk about her ongoing activism.
TW: Great. I also want to mention a woman, Katrina Haslip. Although she wasn’t there at the public hearing, she was included in the play, in that she was a well-known citizen activist, and that when she found out that the CDC was actually going to change the definition to include the women-specific illnesses, she was actually in the hospital, near death. And, in fact, she died a short time later.
And then, when a reporter asked her how she felt about the fact that the government had changed the definition of AIDS, she answered, “The government didn’t change the definition of AIDS. We did. We did.”
Why do you think people in power get praise for something, in terms of a change, versus the real story of how the community made the change?
VRJ: Sometimes I think that the history of the United States is based on a whole bunch of fallacies; just like that. An example right now would be how our governor, the New York governor, Cuomo, is getting kudos and stuff for ending the epidemic in New York State—which is a whole bunch of bullshit. Because at every turn he put up a wall, a block, for us to go forward and do our jobs. So, I think that’s just how—I think that’s just how people that are in power make themselves seem greater. And people don’t know any better.
TW: What does that say about our society, in terms of constructing a narrative? Like, fact and truth versus untruth.
TK: I think it’s also that the media is lazy and doesn’t know how to report. Maybe lazy is too harsh a word, but I can’t think of a better word. But it doesn’t know how to report on the nuance of actually how change happens, how it unfolds over time and involves many people. And so often, I think, powerful people just get used to getting the credit for all of that work.
I don’t like it. I think it’s wrong. And so I think that something that we do as a collective is, we try to fight against it as much as possible. And we draw out the nuance around HIV. And I think you do that through a lot of conversations, repeating yourself, and listening really hard to activists like Valerie. Because that’s how you hear how change actually happens.
TW: The focus of this play clearly unpacked what happened around this event of changing the definition. And you guys mentioned that before January of 1993, the medical community’s understanding of who could be diagnosed with AIDS was incredibly narrow.
Why do clinical criteria for diagnoses matter? Why was this so important to get this changed?
EK: Well, the definition was totally exclusive of cisgender women. I mean, in order to get an AIDS diagnosis, you had to have—you had to be, to test HIV positive, and that could happen under one of the opportunistic infections. And none of the opportunistic infections that were currently listed were the ones that were actually affecting women. So, yeast infection, cervical cancer—also, things affecting injection-drug users, like tuberculosis. Folks would be presenting with these symptoms and dying, and completely miss the opportunity to be recognized as an AIDS case, or get into a clinical trial, or be eligible for benefits to support their health journey.
So, it was crucial that the definition change. I think it’s crazy that it took as long as it did. I think that looking back, we’ve come such a long way since 1992. But people were dying.
VRJ: It basically took from 1981 to 1992 to even look for these changes. Like, “Hey, this is something that might just be happening. Because they keep telling us that it’s happening. So maybe we need to look at it.”
That’s why they take—why it’s a 20-year process in government for anything.
EK: And why the experiences of people living with HIV are never considered as valid information. At some point, if everyone shares the same experience, why does it take the medical community so long to accept that those lives matter, or to get on board and say, “Oh, yeah. We hear you. You’re all getting chronic yeast infections. I guess we should pay attention to that.” Why did it take so long for those voices to be heard?
VRJ: When I started to come together and started attending, like, support groups with other women who were going through things that I was going through, it was almost like—that was like the first Me Too movement. We were like, “Oh, my God. Me, too!” “Oh, man. Me, too!”
So we started to kind of realize, holy shit! This is something that women with HIV are getting. This is something that we’re going through. This is something totally different than what men are going through, or even at the rate that IV [drug] users are going through. So we kind of had to—as we were learning—because there weren’t too many people, women, anyway, trying to get together—only because they weren’t afraid. It’s like, “Oh, shit. We have this virus. It’s going to kill us. Everybody that we know is dying within two years. So we need to get our shit together and do it fast.”
And there was a sense of urgency, and everything. It’s almost like—I forget her name—the one that said, “If you’re not going to count our lives, then count our deaths.” You know? But we were going to make sure that people knew that this was happening.
TW: As I’m listening to all of you talk, it’s very obvious that gender bias really threatens women’s health, and that this is something that is systemic, and it’s historical, and it hasn’t stopped because the definition got changed. It’s still happening.
You know, about a year and a half ago, a woman named Maya Dusenbery released a book called Doing Harm. It talks about how this is still ongoing, and how it puts women at risk for disability and death. There’s still this cage that is part of this system that’s threatening women. And it’s all based on gender bias.
So, what’s next for the play?
TK: We’re working with the Brooklyn Academy of Music, BAM, to hold an afternoon workshop on March 21 called, “Living Testimony.” And that’s going to be an opportunity to think about the ways in which we as people who are alive can use our personal archive, or our interesting history to tell the past and future and present. And we’re going to do a reading and then a workshop based on our play.
TW: Great. And I guess my final question for you guys is, you know, this was such an amazing experience. And I feel very lucky that I got to see it. A lot of the collective’s work seems to do a lot around the cultural production of HIV and AIDS. And I’m just wondering if you feel like the work that you guys do is a form of activism.
EK: Yeah. It would be. I think that there’s lots of different ways to do activism, and sometimes that involves organizing a demonstration, or planting a seed and having a conversation. And I think taking time to consider nuance and to be really intentional about story and people is countercultural in 2020. So, I think of this as activism.
TW: And if folks wanted to hear or look at more information, there’s a couple of resources. There’s the website for your collective. Of course, there’s www.housingworks.org. And I’m also wondering, you know, because this was done in celebration of Love Positive Women, if there’s information about Love Positive Women? If there’s a website for that? Unfortunately, I couldn’t find one.
TK: There’s not a central website. Terri, I would also add the panel that you put together for the New York Public Library a few years ago as being one of the most important documents about this story of changing the definition of AIDS. I show that in my class. I show parts of that in my class every year. What you were able to do with that really helps get the word out there. So I’d really include that.
TW: Alright. Thanks, Ted. And it’s mainly just because you want to embarrass me, because I cry at the beginning of it.
TK: I would also say—you mentioned Katrina Haslip earlier? And I would say anything anybody could do to read about and learn about Katrina Haslip will help open up this door of HIV.
She did a lot of her activism from prison. And she not only helped change the definition of AIDS, but she also made sure that people living with HIV in prison got to have a little bit more dignity, and that women had a local and a vocal point. For me, she’s like a gateway drug to amazing greatness.
TW: Great. Thank you. Yes. She is certainly somebody to read about and learn from.
Thanks, everyone, for speaking with me today. This was a great conversation. I look forward to seeing what happens with the play. As I mentioned, I have fantasies of seeing it at the Public Theater, and then later on Broadway.
VRJ: One more thing that I’d like to add—I’d be remiss if I don’t say it—is that, you know, even though we’ve come a long way since then, there’s still a lot that we don’t know, as far as women’s health and how HIV has affected the body of a woman who has been living with this for 30 years.
I say that because I still don’t know what other women that have had it for 30 years are going through now. I only have a handful of those people in my life right now. And we have a lot of the same things happening. And there’s still so much more that we need to do.
Why is it that there’s nothing that we can really do to address the lipodystrophy, other than popping another pill that might or might not do something? Why are my bones feeling the way they are? Why are my joints so affected?
My mother’s, what? Eighteen years older than I am; and I think I’ve surpassed her in almost every area of, you know, health. So, it’s frustrating. It’s a very frustrating process. It’s still frustrating.
TW: No, I think that’s important. I’m glad you brought that up. Because of the miracle of medicine, people have the opportunity to live longer. And so, with that is, what does it mean to age with HIV? That’s a whole area of research that is starting to finally get some attention. But, to your point, we still don’t have a lot of answers.
TK: And to Valerie’s point, there’s disparity about who gets to survive. Right? Like, Wendy, also whose name is in the play; she died in 1994. Katrina died in 1992. It’s like even among people who are marked for premature death, there’s people who still die faster. And that’s because a lot is still unknown.
EK: That’s right.
TW: Right. Again, thank you so much for speaking with me today. Good luck to everyone in your individual work and continue contributing and raising awareness. It’s so important.
TK: Thank you for doing this. It’s such a pleasure to speak with somebody so knowledgeable.