Imara Jones: Hello there. It’s Imara. Welcome to the TransLash Podcast, a show where we tell trans stories to save trans lives.
Well, I hope that you had a good Thanksgiving holiday and whatever way you choose to spend and mark the day. Of course, this year’s Thanksgiving was much harder for so many in our community, because of the attack just days before on the Club Q nightclub in Colorado Springs, Colorado. I know that for many of you have brought up traumatic experiences that you’ve been through. Of course, the fact that two out of the five victims were trans also adds to the stress and the pain and the anguish that so many people are feeling. I too feel it and felt it. And I hope that you’re already doing whatever you need to do to take care of yourselves. There’s so many resources in our community to do so, both local and national. And I hope that you are taking advantage of those. I spent a lot of time doing press[?] around this during the Thanksgiving holiday, which you can find at TransLash media and my own social media pages. So, we won’t be taking time to do that here, during this program. But just know that everyone here at TransLash is holding each of you in our hearts and want you to be careful.
December 1 is World AIDS Day and HIV/AIDS, even though it is not spoken about greatly in the media much anymore, continues to be a relevant topic for the world, our country, and for our community. There are 1.2 million people living with HIV/AIDS in the United States, and more than 1 out of 10 don’t know it. With respect to trans people, trans women are 49 times more likely to be HIV positive than the general population. But Black trans women having the highest rates of HIV/AIDS positivity at nearly 1 out of 4. And we have to remember that HIV/AIDS has killed more than 35 million people worldwide.
But the good news is that there’s so much hope out there. And so what we want to try to do in this program is to bridge the reality and the severity of what HIV/AIDS can be, to the hope represented by what can happen if we mobilize, give people resources, test all those that we can, and of course, enter them into treatment. And I have long wanted to do a program on HIV/AIDS in our community. As a matter of fact, the very first media campaign that I ran was on HIV/AIDS, a program called NO HIV/AIDS. So this is a topic that is close to my heart. And I am so thrilled that we will be able to talk to leading trans voices on this issue during this program.
First up is Presidential Advisory Commission on HIV/AIDS member, Tori Cooper. We’ll talk to her about her vision for better policy and leadership around HIV/AIDS.
Tori Cooper: In 10 years, what I hope is that there will be more in each of those roles that black trans women will be calling more shots and writing more checks. We won’t just be the recipient of check writing. We’ll also be the check writers, ourselves, and the program developers, and the program implementers and not just the program recipients.
Imara: Then we’ll speak with social entrepreneur and actor, Ja’Mel Ashely Ware, about his efforts to use economic empowerment as a way to combat HIV/AIDS.
Ja’Mel Ashely: For the past three years, I have been able to pour into other young entrepreneurs, who are either living with HIV or vulnerable to contracting HIV, to show them that regardless of your HIV status, there is so much life to be lived.
Imara: But before we get to these incredible conversations, let’s start out, as always, with some trans joy.
Imara: PrEP and PEP are two of our most powerful tools in the fight against HIV. But not everyone has equal access to these life-saving treatments. The TransLatin@ Coalition is working to bridge this gap for the transgender nonconforming and intersex immigrant community in Los Angeles. Their PrEP & PEP program focuses on providing Case management, Referral services and Educational Outreach to those traditionally left out of HIV public health campaigns. Here’s their program coordinator, Rita Garcia, to tell us more.
Rita Garcia: What really inspired me to do this, and the passion to continue and believing on this medication – because I also take PrEP – because I have so many friends in the past that passed away. In their life, there was no PrEP, there was no PEP. And the struggle of their life, and seeing someone living being HIV positive, destroy their life, basically, because they think it’s no future. And having now medication to live in a freedom. This, for me, was like magical, like PrEP and PrEP is magical.
Imara: Rita Garcia, you, and the TransLatin@ Coalition are trans joy.
Imara: I’m now joined by the Tireless Community organizer, educator, author, and trans and HIV Health equity advocate, Tori Cooper. Tori has been a leader on HIV related issues for over 30 years. She’s worked at the local and national level, serving as both a prevention specialist at positive impact health centers in Atlanta, and as a CDC subject matter expert. She even founded her own consulting agency, Advocates for Better Care Atlanta, in 2015. With all of this experience, it is no surprise that Tori is the first black trans woman to serve on the Presidential Advisory Council on HIV/AIDS, commonly known as PACHA. Appointed by the President of the United States, PACHA members advise the Secretary of Health and Human Services on HIV/AIDS health policy.
Tori has also received tons of accolades and awards. She was honored as one of the most influential LGBTQ Georgians by OUT Georgia, in 2020, and as one of the Advocates People of the Year in 2021. Tori also serves as the Director of Community Engagement for the Human Rights Campaign, Transgender Justice Initiative, where she focuses on economic empowerment, capacity building programs, public safety and education. Tori, thank you so much for joining me this morning from Washington, no less.
Tori: Good morning. And thank you so much for having me. What an honor.
Imara: Thank you. Thank you so much, Tori, before we get into HIV/AIDS, and how it impacts our community, especially where we are on it, I’m wondering if you can just talk to us a little bit about the first time that HIV/AIDS showed up in your life. Do you remember the first time you had contact with the disease in some way personally or someone that you knew?
Tori: Wow, you start off with the difficult questions.
Tori: My first remembrance of HIV and AIDS was hearing about this thing called GRID on television. GRID was an acronym, G-R-I-D, that stood for gay-related immunodeficiency disease. And I remember hearing about that and thinking, “Wow, how scary.” And then I remembered, uh, quite distinctly, when I was in middle school, my mom’s father, and my mom’s cousin died on the same day — one in the morning, one in the evening. So my grandfather didn’t died of complications from AIDS, but our cousin did. And I remembered in that moment, I remember how my parents and some other family members had gone to visit him. He lived in New York at that time. And they describes coming back as having to wear what I- I believe my father used to term, in astronaut suits. And how the summer before, all of us had been with him and, and everything was great, and seen the city and had a wonderful time. And the way that he died all alone, and so sick, and so sudden, and it was simply because he had a disease that no one really knew much about. And so, that was the closest, and really the first time that AIDS, that kind of insert into my personal life.
Imara: Wow. [deep breath] And then- That’s a lot at a young age. Just want to acknowledge that. And so, as you got older and grew up and came into your womanhood and transitioning, I’m wondering, what happened to make you want to work on HIV/AIDS as something that would be a focus of your life? Like, how did it go from something that you were dealing with in your family, and in your wider community, to something where you felt compelled to make it a part of your mission?
Tori: HIV kind of chose me. I remembered my first time, knowingly working around people who were living with HIV, was actually part of a project in honors class. And we had the opportunity to volunteer for extra credit. Some folks, they wanted to work volunteer with people who had cancer and others with other diseases. And so I went to what I thought was a nursing home. And I’d go back every two or three weeks, and I noticed the same people were gone. And I’m thinking, “Wow, they got better really quickly,” until someone informed me that they died. You know, you’d go in, you’d have eight residents, and seven of them would be dead three weeks later. And so what they were dying of? They were dying from complications from AIDS, and I didn’t know it when I first started. But I became acutely aware of it, by staff[?]. And I was still in my teens then.
And then I was born in 1970. And so HIV has always been a part of my sexual health. Um. We’re really the first generation, who for many of us started having sex, and then had to change practices after we started having sex. Our parents didn’t have to do that. They didn’t suddenly have to wear condoms, their folks didn’t. And folks who are younger than us always grew up with the knowledge around condoms. But for those of us who were having anal sex – we’ll call it what it was – that was something we had to do. My first time, at first few times having sex, we didn’t have to worry about getting pregnant. So we didn’t have to use a condom. But being at that age where HIV suddenly entered into the conversation, and it entered into our bedrooms, we have to be very, very mindful of that. And I’ve never forgotten that.
Imara: What have you learned, from your personal experience, about HIV for trans people,
especially for black trans people? I believe that there was a study in 2020, which did a survey of trans people in seven cities across the country and found that, you know, 2 out of 5 trans people, specifically black trans people, were living with HIV/AIDS. And that black trans people are up to 40 times more likely to contract HIV than the broader population. And usually, when I see statistics like that, it means that there’s a lot going on besides whatever the pathogen is. And I’m wondering what you’ve been able to learn about HIV as it impacts black trans people, and just the severity of what’s driving those numbers.
Tori: So let’s break down what you said, because you were spot on.
Tori: Certainly, there are a lot of other things that work that put black trans people at risk, make us more susceptible to HIV. Let’s say it that way. All right. We have reasons to protect ourselves against contracted HIV, but many of us don’t know it, or don’t feel that we have options. There are- Certainly, their data sets that are saying, two out of five, which is about 40%. But we know, those of us who do the work, especially across the south, that there are a lot of places where those numbers are really, really low. Where they’re on the ground, the numbers are probably closer to 50%. And we believe, some places, some clusters across the south, where the numbers are probably 60 to 70% of black trans women, are living with HIV. Uh. That’s incredibly high. And it speaks to all of the systemic issues that exist across the south and other places that make us pre-exposed to HIV.
I’ve always known that we’re at risk. I am very fortunate that I grew up with some ‘prohoes’ from very, very young. I knew girls who were working the streets. And my education around HIV from those girls was, “Hey, don’t have sex with white men, because white men give you cooties, and white men give you AIDS.” That was my sex Ed from them. And it worked until it didn’t. And so I remember hearing those messages very, very early on. And then some of them got sick and they died. And fortunately, some of them were able to share some wisdom that, “Hey, this disease doesn’t discriminate.” that, “Hey, this disease is insidious. Hey, you don’t want to get this.” These are the messages that they told us, and then others, who were able to hold on long enough for antiretroviral therapy, were able to tell us, “This isn’t a death sentence.” And many of- some of them are still around today. So I got early education, I got education on the go from them, and you can live healthily with HIV.
Imara: So that’s the good news in all of this. Kind of the exact opposite of where we started, which is that, there is now HIV treatments which allow for long lives, that allow the disease to be undetectable in the body. And all the studies say that essentially, the health impacts on HIV/AIDS are minimal or greatly diminished. And we also know that, in addition to these tremendous treatments, that there is prevention, there’s PrEP. That allows people to take a pill at a regular interval, which prevents HIV/AIDS. So that’s the exact opposite of where we were. And so I’m wondering if you can just talk about, with those treatments available, both in terms of prevention and longevity, still working on a cure, why the disparities and who is contracting HIV? Because that’s not something that necessarily has to happen with what’s available, the disparities and who’s contracting HIV and who’s dying from HIV, mainly black and brown people disproportionately, of course, trans. If you can talk about why that persists.
Tori: Oh, you are firing bullets this morning. But let’s address, again, some of those things. So I will first start with PrEP. PrEP stands for Pre-Exposure Prophylaxis. And it is an amazing tool and resource to keep people, from who do not have HIV, from acquiring HIV. Period. There are issues with the dissemination of PrEP. Black folks, folks in the hood, folks that I know and you know, folks who don’t live in the hood but black and brown folks, were much later getting involved in PrEP. And there’s still some barriers for folks accessing PrEP.
And we’re asking people to take a pill for something that they don’t get so that they won’t get it. For some people, that creates medical mistrust. Some people just don’t want to take a pill every day. So we’ve got to figure out new modalities. There’s an injectable PrEP, I’m not going to mention the name because I don’t work for a pharmaceutical company, but there is an injectable PrEP option. For some people, that could be a life changer as well. PrEP works for those who need it and who can get it and who want it.
I believe, personally, having done this work for so very, very long and so impacted by HIV, I believe that the way that we get to a functional cure for HIV is making sure that every person who has HIV has every single thing that they need to get to an undetectable viral load. The science is very, very clear, and it’s been proven time and time again, hundreds of thousands of times, a million times over, that if a person has an undetectable viral load, that there is a 0% chance that they can pass HIV along to their sexual partners. I will repeat that again. If a black transgender woman has HIV, and has maintained an undetectable viral load for six consecutive months, she cannot pass HIV along to her sexual partners. That’s great news. People who have HIV knew it. But science had not proven it until a few years ago.
So if we make sure that black transgender woman are- have access to health care quality and affirming health care, which for many of us, some, not every person, also will need access to hormonal therapy. That means, for folks who’d need mental health, if you’re- happen to be a black transgender man, and you have an HIV diagnosis, but you also need mental health, that you have access to mental health. That housing[?] is also a healthcare issue, in my opinion. That you have every single thing that you need to get to and maintain an undetectable viral load. Because if every person with HIV got to undetectable, nobody would ever get HIV. And that is a functional and- and a functional cure.
Imara: Yeah, I think that these dual barriers that you speak about, I mean, we kind of saw them at work in COVID. I mean, still seeing them at work in COVID, which is this combination of issues around access for people, specifically in black and brown communities and at the intersection of being trans. And for them,[?] even more so, the ability just to be able to access health care, access PrEP, even though there’s been a lot of work done around that in terms of making it free and disseminating it to community clinics. But also, just having things, like people don’t think about, like having the time to be able to go visit a doctor.
Tori: Yes, yes. And to get the labs necessary.
Imara: That’s right.
Tori: You know, t-the medicine might be free, but you still have to pay for labs every three months.
Imara: That’s exactly right. And then, on top of it, that combined all those access issues, the ability to trust the medical care system, which we’ve seen, you know, there’s a varying level of trust, specifically, if you are black and brown in this country. I have friends, and even for me, when I don’t go to my PCP, who luckily is trans. But if I go to someone who’s not my PCP, it’s terrifying, because I never know how they’re going to interact with me.
Tori: Uh-huh. Uh-huh.
Imara: And kind of those two things are more systemic issues that we don’t think about in terms of making sure that everyone has access to treatments that are life-sustaining in so many ways, and preventative.
Tori: Thank you for adding that. And can we also mention that systemic racism exists? You know, we live in a country that until this year, January of 22, it was not illegal to discriminate against someone, simply based on the way that their hair grew out of their hand. The Crown Act was passed in January of this year. That says a lot about some of the systemic issues that exist in this country. That as a person with natural hair, I could have been discriminated against for that, and how that bleeds into other areas of our lives.
Imara: Can you tell us a little bit about how you see your work then on PACHA, given the combination of your life experience and your work experience and all the issues that we talked about that impact black trans people and HIV/AIDS, what do you see your role on this Advisory Committee?
Tori: So I will first say, this is an absolutely incredible honor. I remember hearing about PACHA 25 years ago and thinking, “Wow, I’d love to be a part of that, one day.” never actually thinking that it could happen. And so, being the first black trans woman, and only the second trans person on PACHA, and it’s decades old history speaks volumes, I understand that I’d represent a lot of people. It happens to be my voice that’s speaking, saying, every word that I say is on behalf of hundreds and thousands of folks who have similar backgrounds and who have sought into me over the years. I don’t even have to remind myself of it, as to remind other people. When I say something that PACHA, it’s not Tori talking, it’s Us talking. And I think that’s really important. And there’s a- a lot of weight that comes with that.
We are not a direct service organization. We make recommendations directly to Becerra and Dr. Levine and to the Biden administration. So we have direct contact to all of those folks, a direct pipeline. And so it’s important for us to use not just our lived experience, but also the lived experiences of folks from our community. That we can share stories that people share with us, about how HIV is impacting their lives. So it may not be something that I experienced, but it’s something that someone shared with me. Every single time, I understand my role. What I-I think the kids say, because remember, I’m 52. They say I- I understood the assignment. I understand the assignment. And it’s incredibly impactful that we, as a community now, have a voice for us. And I do not take that lightly.
Imara: And just to clarify for listeners, when you mentioned, uh, Becerra and Levine, you were, uh, referring to Secretary of Health and Human Services, Xavier Becerra, and then Assistant Secretary and Admiral, [giggles] Rachel Levine, who is- who is No. 3 at the, um, at the department who we luckily, were able to interview last year. So on that point, if you were called into a meeting with those two, with the Secretary and with the Assistant Secretary, and they said, “Okay, Tori, we want to hear from you the one to three things that we can do right now to lower HIV/AIDS infections and deaths amongst black trans people.” What would it be? If they said, “Okay, we’re serious about hearing you. And whatever you tell us today, we’re going to go do.” And what would you say to them in that meeting?
Tori: Oh, my goodness. Okay. Three of the million things that I would list, one would be, there needs to be prevention for people who are negative. There are very few cases where if a black trans woman goes in and says, “I’m homeless and I don’t have HIV. Can you help me with housing?” other than a shelter, and we know that there are a lot of shelters that actually discriminate against people, there are a few programs that can get her PrEP and also housing at the same time. And so I would make sure to let them know how important it is that we address those things, that we refer to in public health as the social determinants of health, for people who don’t have HIV.
I would also make sure that people understand, that transmasculine individuals and non-binary people also get HIV. And that we need to make sure that their voices are heard as well. So we need to hear and engage those voices much more in prevention and also in treatment.
And then, the third thing would be, that folks who are living with HIV, the black trans women who are living with HIV, have every single thing that they need to get to undetected. Because once you get to that undetectable viral load, your life expectancy is longer, your overall health is much better, you can’t pass HIV along, and I mean that cannot pass HIV along to your sexual partners. And that becomes a functional cure. And so until there’s an actual cure, a magic bullet, if you will, then we have to make sure that all three of those things, and a myriad of other things, are being addressed. But those will be my top three.
Imara: Well, I hope that they will be listening.
Imara: That’s the first thing.
Tori: I want them to listen and act.
Imara: Well, yes, absolutely.
Imara: Everybody listens, but there’s a big difference between, uh, hearing and doing. Looking out five years from now, 10 years from now, what do you hope – when we look at what’s happening with regards to HIV and black trans people – but what do you hope will be fundamentally different? What do you hope you’ll be seeing with regards to where we will be on HIV/AIDS and, uh, black trans people?
Tori: So 10 years from now, I’ll give an Iowa to youth. I hope- In 10 years, I’ll be 62 years old and much closer to retirement, and getting fatter,
Tori: Um, and darker, living on a beach somewhere, eating coconuts, and having Young Trae massage my feet for several hours of the day.
Imara: Oh my God, not to Trae. Okay.
Tori: You’re welcome.
Tori: And so, that’s the odds. The ‘we’ is people who are like me, black trans women, who are, uh, really intent on making a difference. We don’t all advocate the same way. There’s some folks who are better breaking down doors, and there’s some folks who are better sitting at tables, and then some folks who are better at working from the inside, you know, we need moles on the inside, too. And so, in 10 years, what I hope is that there will be more in each of those roles, that black trans women will be calling more shots and writing more checks. We won’t just be the recipient of check writing, we’ll also be the check writers, ourselves; and the program developers, and the program implementers, and not just the program recipients.
And so, ‘you,’ when I speak from the ‘you,’ it’s always a call to action to everybody that’s not a black trans woman. It is important that you speak up for us when we’re not there, and hell even more when we are there. So I hope that more of us have good quality affordable health insurance. So whether you have HIV or not, that’s good. I also hope that HIV will have less of a burden in our community. And I hope that many people who are working in HIV will be out of a job. Folks who aren’t doing a good job will be out of a job. And then, the epidemic itself will have become so controlled, that there will be a need for less folks.
Imara: Well, I think, on this World AIDS Day and this World AIDS Day program, that that’s something that we can all hope for and understand that if that hope is realized in 10 years, that you’ve been a really important part of helping us get there. Thank you so much, Tori.
Tori: Thank you, thank you. I value the work that you’re doing and the voice that you are from community.
Imara: Thank you. Thank you so much. That was Tori Cooper, who is, among other things, the first black trans woman to be a member of the Presidential Advisory Committee on HIV/AIDS.
Imara: I’m so excited to talk to social entrepreneur and actor, Ja’Mel Ashely Ware. Ja’Mel works to reduce the stigma around HIV/AIDS, through his leadership at Project Innovate, housed in the Atlanta nonprofit, THRIVE SS. As project manager, he mentors aspiring young black entrepreneurs on how to create businesses of their own and use them to reduce HIV stigma. Ja’Mel has been a lifelong advocate starting when he toured around the country to tell his story at age seven. After being born HIV positive and orphaned at age 15, Ja’Mel got a degree in social work and founded the Intellectual Ratchet — a diversity and inclusion consulting brand. She has provided consulting services for events like, “Our Lives Magazine,” “Top 100 Queer People of Color Reception,” and “Black in Business.” Ja’Mel is also an actor and has appeared in commercials and films including, “I Need Space,” a new digital series from Donja R. Love about an HIV-positive queer man’s experience of love, loss and healing. It’s no surprise then that Ja’Mel has received numerous awards for his advocacy work, including the “Atlanta trans life resilience award,” and the “I am human hope award.” And most exciting of all, Ja’Mel gave birth to his first child this past May. Ja’Mel, thank you so much for joining me.
Ja’Mel: Thank you so much. It’s so weird to hear someone read your Bio back to you.
Ja’Mel: But it makes me, actually, very proud. Because I think all too often, I’m too hard on myself. I should be doing more, I should be doing more. And in reality, when I hear the things that I’ve done, I feel like I’ve been a great contributor to society. So thank you so much for having me here and for acknowledging the works that I’ve done.
Imara: Of course, of course, and I’m a big fan of the fact that your child was born in May. Now, when were they born in May?
Ja’Mel: May 16th. My little Taurus baby.
Imara: Okay, so then, this is why I’m happy, because they are Taurus baby. I’m a Taurus baby. And they have the exact same birthday as Janet Jackson.
Ja’Mel: Oh, well, that I did not know. [chuckles]
Imara: Mm-hmm. May 16th.
Ja’Mel: It also is my partner and I’s anniversary.
Imara: Oh my gosh. So you have to start incorporating music with Janet Jackson.
Ja’Mel: [giggles] I can guess so.
Imara: Into your anniversary celebration.
Ja’Mel: And in children’s birthday parties.
It will be interesting. [chuckles]
Imara: And in children’s birthday parties. Absolutely. I wanted to start out with why we wanted to talk to you. And that is that, far too often, when it comes to a conversation about HIV/AIDS, writ large- Forget the stories of trans men being included, specifically by trans men. But the leadership, the vision, the role in helping to make sure that this epidemic becomes a thing of the past, is something that we rarely ever hear about. And so I’m wondering if you can just reflect for us why you think that is? Why don’t we center writ large as a community, and in health policy, the leadership, the stories, the perspectives, the needs of black transmen within the HIV/AIDS epidemic?
Ja’Mel: That’s a loaded question.
Imara: You can answer it loadedly.
Ja’Mel: [laughs] I think we’d start with the fact that trans men, in general, aren’t just invisible in the conversation. So how can we have a conversation about trans men and HIV if we’re not having conversations about trans men at all? When folks think about trans men, if they think about us in the first place, we’re still often lumped into categories with females or with women. And the data just isn’t tracked. The efforts aren’t noticed. Because the other thing is that a lot of trans men live stealth lives. A lot of us transition and we don’t want to be in the forefront of the trans movement. We just want to live our everyday lives.
I think another thing, too, is that, when you think about HIV in general, even in 2022, I’ve done this work since I was seven years old. I am vertically transmission, which means I was born with HIV, right? And then, I still don’t see myself in the story. People still see HIV as this gay virus. And so you have these three things. We’re invisible in the narrative of life. Some of us just want to be stealth. Others of us don’t feel comfortable enough talking about our sexuality and the sexual acts that we have.
Imara: Yeah, that is a lot. I can see why you say it’s a loaded question. Because we have to touch on so many things that we don’t speak about — around invisibility, around who gets seen and heard, and around sex, and the way in which we often- too often associate sexual acts with masculinity or femininity, even the way amongst gay sex, the way that it’s perceived as being, you know, either active or passive and given these gendered roles and stereotypes. And so, extrapolate that to trans men, and all of those things together are really intense burdens. What do you think that we’d lose by not including trans men, though? We’ve talked about why that’s not happening, and they all track with bigger things we have to take out in our community. But what do we lose by not including trans men in the conversation around HIV and AIDS?
Ja’Mel: I think the biggest thing that we’d lose is the ability to save lives. In 2022, there are still people that are dying from HIV, when there is no need to do that. We have the resources. The scientific advancements is- is beyond anything that I ever thought that I would see in my lifetime. And so I think the biggest thing that we’d lose is that true opportunity to end the epidemic. We’d lose the ability to talk to a community about how we see the world, how we move through the world.
[deep breath] Oh, this is- this question is kind of, it’s kind of making me emotional because it- it makes me think about a really good friend of mine who is a trans man, and who is living with HIV, and who has not been on HIV medications for the past few years. And his reasoning is because he doesn’t want to be seen in HIV clinics, in the case that someone might know his sexual preferences. So I think what we’re losing is the ability for people to fully be themselves, to be seen, to be undetectable, and to stop the transmission.
I think the question just brings so much sadness to me because I have a lot of trans guys who come to me who are positive, and who don’t feel comfortable being public, or who contracted HIV from some kind of sexual assault, and are afraid to go to the doctors because they are afraid of being blamed for their own status. And I think that not including the narratives of trans masculine leaders or trans-masculine folks who are living with HIV, we just are perpetuating this- this HIV stigma. And we’re not doing our job of ending the epidemic. I-I’ll-I’ll leave it at that.
Imara: I think those stories are really powerful because what they underscore is that, for people in the United States, especially people at the intersections of so many marginalizations, that the AIDS epidemic is far from over. And what you’re describing are stories which could be from the 1990s.
Imara: In terms of stigma, and shame, and that stigma feeding, the inability of people to be able to access care because we’re failing to make people visible and to accept her.
Imara: I can see that that’s deeply painful, of course, it’s deeply painful.
Ja’Mel: You know, I have watched so many people die from complications to HIV. And as I got older, I actually walked away from HIV advocacy. I just couldn’t take it anymore. I was somewhere in college, and I didn’t want to talk about living with HIV anymore. I didn’t want to hear anything about HIV advocacy, because I was tired of losing the people that I loved. And when I moved to Atlanta in 2018, somehow or another, I-I was actually calling God, and shuffled me back into advocacy work. And it’s the same thing.
And so I often find myself overwhelmed with grief because here I am, 34 years old, have outlived both of my parents. I have outlived some of my peers that I know that are living with HIV. And now, I’m finding myself outliving people who were diagnosed three or four years ago. Because there is so much shame attached to HIV that people cannot see beyond the cloud of judgement or fear of what might be to even save their own lives.
Imara: I’m wondering if one of the things that brought you back is some sort of hope that you have. What role is hope driving you in this moment of intense sadness, as you said, intense invisibility? Because when it comes to trans men and specifically, black trans men, as we’ve touched on, there’s so many things that you have to confront in order to be able to even get to how to turn back and stop HIV/AIDS and get people what they need in order to live. So what hope is driving you in this moment? What is keeping you going?
Ja’Mel: When I stepped away, I decided to do anything but social work. And that’s how I became a business owner. As a business owner, I learned to appreciate the skills that I’ve always had. But for some reason, I wasn’t able to see when I was an advocate, or when I was a social worker. I was able to see and appreciate them in the world of business. And when I moved to Atlanta, I moved here to follow my childhood dream. And that is to be an actor. So here I was in this city. I feel confident in my skills, finally, for the first time in my life. I feel very hopeful about this idea of acting, because I have absolutely amazing agent that I met before I’ve been moved to Atlanta.
And then I was presented with this opportunity to run this program called ‘Project Innovate.’ The ideal of Project Innovate is to tie business and community together. And for the past three years, I have been able to pour into other young entrepreneurs, who are either living with HIV or vulnerable to contracting HIV, to show them that regardless of your HIV status, there is so much life to be lived. So for me, the hope is in finding youth and pulling their passion out of them, so that they always have something to fall back on. Because I realized that that’s part of the reason that I have survived this long. I always had something to strive for. I always had goals and ambition. And to be able to help other people recognize that their visions are possible, is enough for me, because I think that’s life-changing. Because you can get an HIV diagnosis. And if you have a community that can pull you up, and can remind you, you still wanted to start that business, or you still wanted to be a singer or a dancer, or a doctor, or whatever, then there’s still something there for you to fight for.
And here I am now. I just graduated my third cohort in October and had this little community. And they all take care of each other, and they check in on each other, and they keep pushing each other. And they make sure that everyone’s taking their medications, or they make sure that they got paperwork for grants turned in on time. And that is empowerment. Not for me, but for them.
Imara: Yeah, I mean, I think that one of the interesting things that you do, as you say, that, you know, this program works on skills around entrepreneurship and the full range of things that people need to be able to thrive and to succeed individually, which is really important for our community, because so many trans people are marginalized economically and entrepreneurship is a way for us to thrive. But in meeting the needs, and having conversations about what people actually have to have in order to make it, you’re able to build, and all of the things that you need to do in order to promote health and wellness around HIV and AIDS. As you say, it becomes a community. It ends the stigma. They’re able to be with each other without hesitation or judgment, which is so key.
And so I think that that’s one of the smart things. And every successful HIV/AIDS program that I have seen, that works on historically marginalized communities, understand that HIV/AIDS is the result of something else that’s gone wrong in our society with regards to opportunity or health or housing or safety, or wellness. And that dealing with HIV/AIDS for those people is about dealing with those other things.
Imara: And it’s one of the things that you’ve tapped into in a way that I’ve never even heard. I mean, a business innovation program for black trans men who have HIV/AIDS. I mean, it is a standout.
Ja’Mel: And- and I can’t take credit for that. So I will say, THRIVE SS is where I work from our Executive Director, Larry Walker, who is a cis gay man. The program initially, when it was handed to me, it was just for queer cis-gendered men. And I said, “Well, you can’t have me run this program,” and that expanded to my brothers. And so we had to really look at the language of the grants and actually go back to our grantor, and, you know, tell them that there are transmen, queer transmen, and also straight transmen, that can benefit from this program. And we’re all one community.
That was the first action that I did, back in the world of advocacy. It’s like, “Yes, I want to run this program, I see the benefit in it, but you cannot forget trans-masculine individuals.” And I think that was a moment of liberating myself because I’ve been caught in the world of being invisible and being okay with that. And I realized that when you get to a certain point in life- We have responsibilities. And I realized that it was my responsibility to not only be open about who I was but to make sure that I took the hinges off the door for my brothers.
Imara: You’ve been doing this work since you were seven years old in a certain shape form or fashion?
Imara: And one of the things that we’re doing right now is what you’ve done all your life, which is to tell stories and tell stories around HIV and AIDS. And I’m wondering if you can tell us why you think it’s important for us to tell these stories and our stories within the larger story of what’s happening, first? And second, what more needs to be done so that the person whom you met, who doesn’t want to get treatment because of stigmas around HIV/AIDS and stigmas around what type of sex they have, what do we need to be doing in order to reach that person through seeing themselves as a part of a community that accepts them to be able to turn that around?
Ja’Mel: You ge- [giggles] you just hitting me with ballparks today, huh? Oh, my goodness. I’ve always been a firm advocate, that visibility is important. And so for me as a kid, it was just that simple, right? I’m here to tell my story. Because I don’t think you understand that HIV affects everyone. And that no one did anything deserving of a virus that can potentially kill them. I was very clear about that, from a young age. My mother was terrified about me wanting to tell my story. But I told her that this is something I had to do. And so she allowed me to.
And so now, as I understand intersectionality, and I’m become more comfortable with my own intersecting identities, I understand that it’s important for me to be not just a person outliving with HIV, but also my trans identity and my queer identity. That can’t be the only one, right? There need to be more stories, because there are parts of me that are disconnected from someone else. Because I do have so many privileges. And I recognize that. So we need more trans masculine stories, not just with people who are living with HIV, but a sexually diverse trans masculine stories, right? Simple stories of trans mass folks who are just simply going to get tested, and making it a normal thing. People need to see these things.
But I really believe that if we’re actually going to get more trans mass folks, on treatments, adherent to medications, we got to do a better job in the doctor’s office. [giggles] Because oftentimes, what I have noticed from people who have come to me, is they may want the care, but they’re more terrified of the doctor sometimes than they are of their community. Because I think it’s particularly as black trans folks, we know how to gather our community. We can gather our community if we need to, but gathering a doctor or a nurse is different. They often are condescending, or they don’t address this in the way that we should be addressed, as far as our body parts or our sexual preferences, or the language that they use. Right?
There are these different langs that we need to see more trans mass folks in, so that we can, together as a community, guide us through the medical system. Because I think when you have someone there, because I’ve gone to doctor’s appointments with many of my brothers, you don’t want to go by yourself, fine out go. Because I’m not intimidated. I’ve been in the system my entire life. I’m not going to let a doctor talk to me crazy, I’m going to tell you, you need to listen to me, you need to listen to my brother. Because doctors will over-talk to you often. We need more of our brothers to step up to do things like that. This idea of this grassroots organizing, to care for each other.
Imara: Well, if, and where you kind of began, which was in your life wanting to be an actor before you faced so many other cross-currents, is that something that you still want for yourself?
Ja’Mel: I, actually, was able to play a role where all my intersections came together in Donja Love’s “I Need Space.” I played a transmasculine queer man living with HIV. And when I say that, it was such a heavy role. The work to prepare for the role, the filming of the role, even when I watched it, it was so heavy for me. I never want to do it again. [chuckles] I am a comedic actor. I want to make people laugh. [chuckles] I want to be silly and goofy. And that is the direction I want to take my acting career. Because I’ve lived such a heavy life. Now, if I happen to get a comedic role in a series that they’re talking about HIV, that’s fine. But I don’t want to put myself through things I’ve already been through again. Because acting is a lot of emotional work and I have been on an emotional roller coaster from the day I was born. And I’m frankly done with it. [laughs]
I want to make people laugh. I want to raise my kid with my partner. I want to be in love. And I want to empower people, but not that way on the screen. I’ll leave all my heavy work for my nonprofit work. And when it comes to my dream, I just want to be free, and to make people laugh, and to be criticized because maybe you didn’t think that was funny, but I did. [chuckles] That’s how I’m choosing to take my acting career, it’s in a way of just black trans joy. Because I think that life is heavy enough. And on a day-to-day basis, I will see something traumatic, I will hear something traumatic, something- some kind of violence may happen against my own person. And I can deal with that. But when I get on the set, I just want to see smiles, and feel joy, and hopefully carry that back into real life.
Imara: Well, I think that we share that hope, not only for you, but for our community and for our world. I want to thank you for coming on and sharing your story, as you have done countless times, and your insights, and for showing us again what it means to be trans, which is that we get to be multiple things at once. We can be an actor, even a comedic actor, an activist, an entrepreneur, and a parent of a child born on the same day as Janet Jackson [chuckles] that was the same time. So I just want to, um, thank you so much and it would be great to see you in a- another black trans actor in a comedic, like, sent up or something. I’m gonna put that out. You and Markis[?] on something. I’m- I’m with it.
Ja’Mel: Yes… Speak that into the universe, for me. I’ll receive it.
Imara: Bake[?] that into the universe. Thank you so much again. That was Ja’Mel Ashely Ware, social entrepreneur and actor.
Imara: Thank you for joining me on the TransLash Podcast. Now, listen all the way through to the end of the show for something extra. If you like what you heard, please go to Apple Podcasts to rate and review us. We still need your help to combat the trolls that are trying to give us one stars. You can listen to TransLash wherever you get your podcast. Check us out on the web at TransLash.org to sign up for our weekly newsletter. Follow us on Twitter and Instagram @TransLashMedia. Like us on Facebook and tell your friends.
The TransLash Podcast is produced by TransLash Media. The TransLash team includes Oliver Ash-Klein and in Aubrey Calloway. Our intern is Mirana Munson-Burke. Xander Adams is a contributing producer to the show and our sound engineer. Digital strategy is handled by Daniela Capistrano. The music you heard was composed by Ben Draghi and also courtesy of ZZK Records. The TransLash Podcast is made possible by the support of foundations and listeners like you.
I’m looking forward to what’s going to happen on Twitter. I don’t know about you all, but I’ve become obsessed about this story because it has been revelatory of the fact that everything that we had been told about billionaires, and specifically about one genius billionaire in particular, is just total bunk. And it just shows like the vast inequality and inequity in our society, that impart the way that he accumulated his money was by Wizard of Oz, and get all the way through. And the fact that he’s been dragged into this site, which he thought was about technology, is actually about people. And when he actually has to deal with people, he fails.
And… I mean, partly, I’m sad because I use Twitter. And I know y’all use Twitter and a lot of trans people have used Twitter like Black trans man Thursday, and all these other things that have been really positive about the site. And increasingly trans people are being harassed by the right-wingers and Nazis and Christian nationalists, who’ve all piled back into the site and the bots[?] to harass us. So who knows how long we’ll be able to stay on. And that’s not good for our community.
But what is being revealed in all of these is the fallacy of the idea that certain people deserve the vast amounts of wealth they’ve been able to pile up, while everyone else is- is left trying to scramble to make ends meet. And I am enjoying that because I’ve long thought that it’s BS. You know, even the story that he told about himself of like, being, you know, this immigrant from Canada and all the rest of it. It’s just totally not true. Wealthy, South African apartheid family ran a gem mine. Yeah, it’s just all being revealed. And so I am looking forward to seeing what happens with that over the next two weeks, and trying to figure out what in the world I’m doing for the holidays because I have absolutely no idea. So if you have any ideas of how I should be spending my holiday and what I’d be doing besides just be wanting to be under the covers and sleep. I don’t know. Pop it in the chat.
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