In 2017, Abdul-Aliy A. Muhammad refused to take their HIV medication until Nurit Shein, the Executive Director of the Mazzoni Center, Philadelphia’s LGBT clinic, was fired. It was under her tenure, that people living with HIV had been abused by medical staff and let down by the organization as a whole via systemic bias. Muhammad’s demonstration was successful. Shein stepped down.
As a co-founder of the Black and Brown Workers Cooperative, Muhammad was already known within East Coast organizing circles, yete merged from the medication strike with even more followers. They used this larger platform to further draw attention to racial, gender, class and sexual based bias, and increase the general public’s awareness of the specifics of living with HIV in the present, often with a focus on desire, disclosure and surveillance. Two of their widely read essays are Desiring Intimacy After an HIV Diagnosis, in a Time More Naked Than Sexy on The Body, and Grindr of Gears: An App for the Surveillance State for The Gran Varones.
Muhammad’s writing talents do not end with essays and journalism. Last year, they also released a chapbook of poetry entitled, A Flower Left to Wilt. Around this time, they released a series of beautiful and erotic photographs of themselves taken by Ero Rose. While the images were a work of art on their own, they also reinforced a message: Muhammad is a sexy, sensitive, political person living with HIV who will not be ignored.
Similarly, Louie Ortiz-Forseca is a force to be reckoned with. Long a voice within AIDS activism, the last five years has seen Forseca focus his vision into a multi-prong project called The Gran Varones that, as the project tag line makes clear, works to amplify “Queer & Trans history and the stories of Latinx & Afro-Latinx Gay | Queer | Trans | Bisexual Men & Bois.” This is done a variety of ways, including a network of information-sharing via links on social media platforms, hosting conversations, and Forseca’s own writing about HIV and culture. Within his writing, Forseca blends a love and knowledge of media, and HIV history that rivals most of his contemporaries, with the deft skill of a culture worker who knows how to use nostalgia, affect, and shared knowledge to cultivate interest and understanding. Some highlights from his writing include That Time A Sitcom Beautifully Handled HIV Disclosure, about the under-watched show, Half and Half, and his running commentary on the TV series Pose.
Related to the connections that Forseca creates online is the work he does to build community offline. Forseca recently launched a YouTube show, Kikis with Louie, made in partnership with Advocates of Youth, which provides fresh perspectives and information to viewers around sexuality, race, gender and other pillars of contemporary lives. Similarly, Forseca has started the GV Fellowship, an opportunity for a new generation of activists to learn, be listened to, and make a positive impact. In looking at Forseca’s output, a driving force seems to be ensuring that the work of world-building continues and that the past is not forgotten.
With all of this in mind, it should come as no surprise that Muhammad and Forseca are friends, and support each other not only in their work but also supporting each other in life. In the conversation below, the pair begin by working through a terrible situation Muhammad went through, as Fonseca first listens, and then provides his own perspective. Together, the two end up discussing what it means to be queer, black, brown, and living with HIV, including. the role disclosure, families, and cultural pressure play in their lives.
While the conversation has historical content, it also dives into contemporary issues, including the HIV prevention medication Truvada known as PrEP (pre-exposure prophylaxis); and the slogan U = U, created by the Prevention Access Campaign, which stands for Undetectable = Untransmittable, a short way of saying if a person living with HIV is on a treatment that reduces their viral load to a medically approved minimal amount, then the virus is no longer transmittable.
To the uninitiate in the world of HIV, the conversation may bring up a lot of questions, but for people long in the life, the conversation offers itself as a salve, a healing contribution to the ongoing global response to HIV that too often is not about the inner lives of people with HIV as this conversation is.
– Theodore (ted) Kerr
Abdul-Aliy A. Muhammad: We live in a world that doesn't know how to show up for HIV positive people, or for black people. I am reminded of it every time I am rejected for my status. Like the first time I disclosed to someone, in the middle of a date and saw their whole body language shift. Their response was “Oh, you know, you're a nice person. Thank you for that. We can be friends.” It was painful. It just adds to that constant feeling of being inadequate but also feeling criminalized and policed by my friends.
Louie Ortiz-Fonseca: Right, like you courted disaster.
AAAM: But here is the thing, it shouldn’t matter. But as we know, it does. Like that time I got to Chicago for this event, and this person said I could stay with them, and this person was—I will just say it—attractive. We were having a conversation all night on the couch, and I was under the impression that I was supposed to sleep in this person's room, and that they were going to sleep elsewhere. But it became clear at some point that something changed. Next thing I know, the person started disrobing me. It happened so fast. And then we had to have the disclosure conversation later, on the phone, when I was back in Philly. They became irate and started saying because I lied to a black person about my intentions, I was upholding white supremacy. And I am like, how am I a white supremacist because you are AIDSphobic? And it did not stop there. The word rape got used. I got really scared, now the chance of law enforcement getting involved is closer. But also, we had sex consensually.
LOF: Was that the end of it?
AAAM: No. Because then I reached out to a friend for support, they said something like, no, I can't support you. It was rape, I worked in the domestic violence movement, and I know what consent is. As a seronegative person to say something like that to me at that point… I mean, I was done…but the world wasn’t, because then the social sanctions happened. I was made to feel predatory, dangerous, and criminal. Mediation was brought up, and I was willing. Regardless of how I feel, if this person feels harmed, I am going to listen and be accountable. Meanwhile, they made a social media status about that night, and because people are so misinformed it comes down to me, as the poz person, left holding all the burden of responsibility, not just for my health, but for the health of the sexual partner and the community. What are your thoughts about that?
LOF: So, first, let’s name the obvious. That is a lot to go through. Thanks for sharing that with me. Second, I am going to respond, but let me get there. Okay?
AAAM: Of course.
LOF: Okay, so whenever there is some HIV news breakthrough or AIDS-related headline, I am almost always upset by how supposed AIDS-aware people react. I see in their reposting and comments that they still frame HIV as a one-sided thing. And you know what, it is so often people with access to advanced social justice language who frame their misinformation and judgments as intersectionality. HIV exposes the limit to so many people’s analysis around race, class, gender.
AAAM: People have it on their minds that we are predators who don’t need or get to have intimacy, and that HIV is something we invited in just by living our life. Like, before we are human, we are a walking vector, a risk to public safety, and yet hardly any of these social justice warriors are stopping to question who is this public they are speaking of? I remember working at Mazzoni, Philadelphia’s LGBT health center, and a lot of people working in the testing program would say things about people who didn't disclose to their sexual partners, and it became clear to me that the staff did not understand the very real fears of rejection and retribution facing people living with HIV, regardless of how non-transmittable the virus is. The staff just failed to see people with HIV as fully human, and so how incredibly strange it is to have to disclose anything to a stranger or a loved one, let alone something like HIV. I am not trying to go medical before we hook up.
LOF: I remember in the late nineties when a friend of mine who seroconverted came to me to tell me that he wanted to get tested for an STI. This was years before I found out my own status, and in my head I thought, bitch, you didn't learn. I, like so many other people, thought that HIV was a lesson that you had to learn. You know what I mean?
AAAM: I feel like it comes down to it, people feel that HIV is something you have to make amends for, or, maybe, it is proof that you need to make amends for something, a sign you have harmed yourself and everyone around you.
LOF: I compare it to recovery, as there's no room for slipping. Once you name your status (be it poz, sober, or both), you have to be inspirational. That is how you make amends. And I think as queer men we just accept this, like, we just accept that once we disclose it is supposed to be our life’s mission to END AIDS, with no real consideration what it means to END it, and what an END means for the living. I feel this especially for black and brown folks. We are supposed to just be working for redemption in order to find love after great failure.
AAAM: Right! Like you are supposed to be handing out condoms and lube—ALL THE TIME! It is such a fucked up feeling. Immediately after testing positive, my first two thoughts were: I need to see a doctor, and I need to give back to the community. Like, why the fuck was I socialized to think that way? Any other person when trauma happens to them are given space, provided a chance to step back and begin to recover.
LOF: But not black and brown people with HIV. Nope, we have to volunteer, share our story, be of service to the AIDS service organizations. And this way of being works for a while because you make a community, but there is a limit to how much service I can do after the shock of diagnosis is over. The fatigue kicks in.
But listen, I also need to say this: disclosure matters. And I am talking about how we reflect and show up for each other. Over the years, I have seen how when you know more people living with HIV, it changes your relationship to the epidemic. Think about it, less people get dragged on social media for a positive status now than they did ten years ago. Disclosure is not a perfect arrangement, because it still puts the responsibility of ending stigma and the virus on us, but there is some power in seeing others and not feeling alone.
AAAM: Yes, and within that work we all have different ways of making it happen. Like, for example, there are some people who really take on the HIV STOPS WITH ME rhetoric, or the people living with HIV who are really into being on the PrEP squad or talking about U = U all the time.
LOF: True, true, which brings up something I want to talk about: maybe a sign of progress is that HIV-positive folks can be problematic now, too. You know what I mean? I see so many people with the virus who cultivate, what I call, a third status, which is, they are positive but feel the need to declare as much as they can that they are undetectable. They think it makes them attractive.
AAAM: That's interesting, the idea of the third status. Like, a 21st-century way of creating a division between the “good people” with HIV, and “the bad,” creating a divide among the already oppressed, without taking into consideration health access and the difference in people’s ability to take and respond to treatment. But, I mean, now that you mention it, we see this kind of division happening when it comes to HIV criminalization laws. Some folks are trying to modernize the laws so they reflect the U = U science, so instead of criminalizing all people with HIV it just criminalizes people who are not undetectable, and to me that is bad. We don’t need the laws modernized, we need them abolished.
But wait, can we switch gears? I have a question for you that I will preface a bit. So, as you remember, in 2017, I refused to take my meds until Mazzoni Center CEO/Executive Director Nurit Shein stepped down after years of allowing abuse of people happen under her watch. And #humble brag, it worked, and I resumed my medication. What I have realized since then, is that it was that activism that put my positive HIV status on people’s radar. And then I started to get a lot of hits and messages on social media, much of it intense. You, of course, are the founder of Gran Varones, a cross platform and network that amplifies trans and queer pop culture history and the stories of latinx and afro-latinx gay|queer|trans|bisexual men and bois, and so I am wondering that since in the work you are also public about your status, what are some of the weirdest questions you have gotten about HIV?
LOF: I have gotten random and misinformed questions, but never downright malicious comments or anything. The thing that happened to me was, my status was disclosed in a tweet, by me. I was still trying to figure out what Twitter was, and I put my status in the last tweet of a thread assuming it would be buried. I didn’t know that the tweet alone could be retweeted.
AAAM: But you had shared your status before, right?
LOF: Yes, but because people read the way they do, it was glanced over. And I was okay with that, because what I had not told my family.
AAAM: Because you were afraid?
LOF: No, I just didn't want to be a burden, I didn't know how to be that vulnerable. Of course, once my family found out, they were supportive, as much as they could. I was worrying about nothing, but not really, because you never know.
AAAM: I had the same experience. I didn’t want to tell my mother. The first person I told was my younger sister, Badriyah. We were watching BET, and something came up about HIV. My body got hot. I knew this was an opportunity, so I was like, Badriyah, I have to tell you something: I am HIV positive. I think she cried. We had a moment. And then I told her that I didn't want her to tell my mother because my mother was dealing with cancer at the time and, as you know, later passed from it. So, I had similar thoughts about being a burden, in part because since I was a gay teen, people always told me to be careful, referring to the streets in general, but a lot of warning from older people about HIV.
LOF: Oh, I can relate. When I was in the hospital with pneumonia, in the ICU, my mom called me out of the blue. She didn’t know I was in the hospital. She said, God told me to call you. What's going on down there? And let me tell you, I was too weak to walk but not too weak to keep up a facade. I wanted to protect her, and I didn’t want her rushing up from Florida to see me. That, for me, would have confirmed that I was dying soon, and I was not ready. But eventually I did tell my aunt Janet. She was like my best friend, and she was dealing with cancer. I was in DC, and she had just found out she was stage four. She was not okay, and so I said, Janet, I'm gonna tell you something, and I need you not to cry. I'm only telling you because a lot of what you're feeling I have felt, too… I just wanted to make the world less shitty for her. We navigated her being sick and me disclosing. And I'm glad that I told her because she is really important to me, and she is someone connected to my mother. So, I didn’t tell her as a form of burden, but to share.
AAAM: You have a beautiful way of telling stories, like all the ones about your brother.
LOF: I think you relate to those stories because your relationship with your brother is very similar to mine with Nicholas, one filled with frustration, resentment, but an awareness growing up that we are all we had. So, maybe you understand how telling stories about him has been about letting him off the hook. I know that he didn't create all the systems that have impacted him. You know what I mean? Like, for years I blamed him and my mother. I would see Nicholas making decisions that I wouldn't have made, and I almost let it get me depressed. Like, sometimes I was literally killing myself over the fact I couldn’t change him, or anyone. I had to learn that you can love someone, but you can't make decisions for them. And your frustration about what they're doing does nothing to shift how they move in the world. It just makes you more embittered. Which is hard because there was a lot of projection going on at the time. I was making decisions I wanted him to be making. But here is the thing, in the end, we ended up in the same place, we are both living with HIV, making our lives work. So, it is confusing. I thought by making different choices, I could avoid everything I wanted me and my brother to be saved from. But it didn’t work. And you know why, because I was still doing all the same shit he and everyone else was doing, but I was doing it in secret.
AAAM: I hear you, and it makes sense to me.
LOF: And looking back, I get it. I understand why I had these narratives of about my brother, and about me, and these ideas about how we were going to beat the odds or whatever. It was due to the bad ways we are taught history. We get all these stories about great people, but no context, no web of relationships, no nuance. And so I thought we could control our fates through individual choices. But that is not how it works. Our lives are interconnected. You know what I mean?
AAAM: Yes, I do, and this kind of big picture to look at things that I am talking about. With your social media presence, and Gran Varones, you provide the fuller picture when you are talking about your family, or HIV history, or even when you talk about celebrities (people forget that pop culture matters, that it provides context.). You provide a place for me to feel myself, and to see myself reflected back at me.
LOF: Thank you for saying that, and you are naming something vital to me. Like, I love the work of Joseph Beam and Essex Hemphill, and I love hearing their stories, and telling their stories as interconnected. I love the way they exist as history together, it is amazing, and I love that they were friends and were creative together. It is a good reminder, people have friends, and witnesses, and lovers.
AAAM: Yah, I cannot get behind that historical trend of isolating people. Like, we know Bayard Rustin was not alone being gay in those streets, or James Baldwin. And we know that even when people do isolate parts of themselves to protect their loved ones, their loved ones are part of the story. I am thinking about all the House Ball mothers who dealt with HIV in silence because they didn't want to be out about their status, fearing their children, who were also poz, would leave. These mothers, even in their silence, were in community.
LOF: I mean, this brings me back to thinking about my mother, and I just have to say, it's not that I was protecting her, I don't think I sat down and said, let me not tell my mother about my HIV status because I want to protect her. It was more like breathing; I was socialized not to be a problem, and rather, to be of service. The message growing up was: if we are needed in the world, then the world won't take us out so quickly. I think that is a story within the existence of blackness. Like we need to be more special than the next person. You know what I mean? It’s always like, let me do this, because if I die now without doing that thing for you, what makes me different from any other motherfucker that died on the block?
AAAM: Ooh, wow. I want to talk about that. Did you ever read The Calendar of Loss: Race, Sexuality, and Mourning in the Early Era of AIDS by Dagmawi Woubshet? There is a great quote from the book:
The recurrent practice of enumerating the dead in mass in social media seems to conform to the logics of accumulation that structure racial capitalism, in which the quantified abstraction of black and trans deaths reveals the calculated value of black and trans lives through states’ grammar of deficit and debt.
For me, what Woubshet is saying, is that the counting of the dead, if we are not careful, can fall in line with capitalism. Like, in capitalism we need numbers to track, count, and validate. And so, his example of trans women is powerful because the media right now only reports about their lives in terms of compounded loss. It gets to a point where the reporting does not seem like it is about bringing humanity to the women, or casting light on what we could be doing to save lives, but instead each report seems to validate the last one, as if accumulation is justification. But for me, I am like, should we only care because there was a high loss of people? As if one death isn’t enough.
I think this can be similar to concerns around self-worth. We get trapped into thinking we need to matter in order to be cared for, and let’s be honest, the bar to mattering is unstable and ruled by market forces. How do we know when we matter? Is there is a number? Like, today was the 34th anniversary of the MOVE bombing. And I was just thinking, do I need the number 34 to remember that black radicals are targets? Do I need enough people on Facebook to share a story about MOVE in order to be reminded? People can write eloquently about what happened, but is it real for them? Because for me, that moment in time is my life right now, and I can’t chart that, or quantify for anyone to understand.
LOF: Right, like does HIV only matter because millions of people have died with the virus? Or—going back to HIV-positive influencers—do we only pay attention because they have a blue mark by their name? All of this makes me think about the ACT UP days, and how they were fighting against the pharmaceutical companies and then pharmaceutical companies said, “okay, well help us—join our team.” And some people did, and that caused fracturing within the movement. Now some folks were co-opted; they were on the side of pharmaceutical companies feeling important because they were being flown to talk about how their activism got pharmaceutical companies to lower their prices. Meanwhile, other people were not included in that conversation, in part, because they didn’t have a story to market, or they didn’t want to curate a narrative for consumption. And these same dynamics are alive today. I see it online, the race to be the AIDS poster child. And I’m like, okay, if that is your brand.
AAAM: I was part of a social media fellowship, and it was really shocking to me how people were being pushed into becoming sponsored activists. It should not have been surprising since I worked in the nonprofit world of Philly, but it was strange to see how people were hoping for Gilead to sponsor them.
LOF: I get it. But I have no patience when a sponsored activist comes for me, my work, or someone I care about.
AAAM: Agreed. Let's do one more swerve and then we have to wrap this up.
AAAM: So, here is the thing, we are two people who have gone through a lot, and try to give a lot. We have figured out that we can be of service not because we have to be, but because we can and we want to be, and we can do it on our own terms, in ways that are for us and by us.
LOF: Yes. And I think we understand that all of this work within the field of HIV response is more than just meds. Like, we have not even really spoken about medication, I think because we both come from this place where we understand we need to have access to healthcare that involves choice and getting what we need before we lose more t-cells.
AAAM: We need healthcare so I am not just waiting until I find myself in the emergency room, because now I am not thinking about money because I am almost dying.
LOF: And I think for us, we are interested in where does that healthcare start? I see the work you do, and I think for you maybe it starts in the street…
AAAM: I mean, it starts where people are. So, yah, the street, if that is what is needed. But also in the home, and online. I think most of my work, or the times I am most happy being of service is when I am just talking to people, and we are showing up for each other. Sometimes that is connecting people to services, or organizing a demo, or writing an article, but honestly, sometimes it is just this: talking about everything.
LOF: My work is also where people can access it. I think meeting in person is great, but also social media is big for me.
AAAM: Online is important.
LOF: We work through so much within digital spaces when we can really show up for each other, and share information we might not get.
AAAM: Okay, now you are starting a whole new conversation about access, geography, and so much more, BUT WE HAVE TO GO TO BED!
LOF: Ok. I love you very much.
AAAM: And I love you. But one last thing, did you see Paula Abdul almost slice that woman’s head off with a fedora during that dance number?
LOF: That is how you enter a room!
AAAM: And how to wrap up a conversation.
Louie A. Ortiz-Fonseca is an HIV Positive Queer AfroBoricua award-winning HIV activist and artist. For over twenty years, he has worked with influential, nationally recognized agencies and has been an integral part of HIV prevention and youth development programming in Philadelphia. He is the Director of LGBTQ Health & Rights at Advocates for Youth, where he works in partnership with young people living with HIV to combat stigma, and hosts a YouTube series for LGBTQ youth, Kikis with Louie. Outside of the organization, Louie is the creator of The Gran Varones, a digital storytelling project that amplifies queer history and is a Ford Public Voices Fellow.
Abdul-Aliy A. Muhammad is a black queer HIV+ non-binary jawn from Philadelphia, PA. They’re a cofounder of the Black and Brown Workers Cooperative, which focuses on workers’ rights and racial justice using an intersectional framework. Recently they released a poetry project, A Flower Left To Wilt, a work interested in intimacy, Blackness, bodily autonomy, and HIV. When they’re not organizing, they write for various outlets about state surveillance, impacts of displacement, and institutional white supremacy.