In August, longtime community advocate Tori Cooper became the first Black transgender woman appointed to the President’s Advisory Council on HIV/AIDS (PACHA). Cooper is Director of Community Engagement for the Transgender Justice Initiative at the Human Rights Campaign, the nation’s largest LGBTQ+ advocacy and lobbying organization.
Enid Vazquez: We’ve been telling our readers for years how the statistics for the transgender community are disproportionally bad. What do you think is important now about HIV in the transgender community, and where do we need to go?
Tori Cooper: One of the reasons why we’re still having these discussions is because we still need these discussions.
There are healthcare systems that are not inclusive of trans people. There are treatment modalities that are not inclusive of trans people. When you think about HIV, you don’t just think about treating people living with it, but also about prevention. And the fact that one of the newest prevention methods actually says in its advertising that it hasn’t been tested on people who were assigned female at birth leaves out transgender men, trans masculine folks, and non-binary folks, folks who simply because of who they are and who they have sex with are at greater risk for HIV.
So the fact that there are all of these different systems that are not inclusive, and some that are actually even anti-trans, means we have to still have these conversations.
It’s important to incorporate new voices into the conversation as well, not just the voices who are always speaking the loudest. As public health professionals, we have to take much more of an intersectional approach to our work.
Intersectional doesn’t just mean listening to people. It means listening and implementing new policies and procedures, with a DEI focus—more diversity, equity, and inclusion.
But it also means having a more diverse set of providers—folks who are providing the services, folks who come and represent a bunch of different communities—because our waiting rooms don’t just look like all of one thing. So in turn, providers should not just represent one community as well.
EV: There’s stigma in clinics. If young trans girls know they’re going to be looked at funny, why the heck would they even go in for treatment?
TC: That’s one of the many reasons that people who are neither White, nor cisgender, nor gay, nor male identified are falling so behind when it comes to treatment.
And, especially when folks are new to an HIV diagnosis, if you have to go to a place where “AIDS” is part of the name of the clinic, you’re probably going to be less inclined to go to that place for treatment. It may be because of your own stigma, or because of the stigma of other people. We are also underutilizing peers in the fight against HIV. Folks who represent different communities.
Peer is one of those catchphrases that has both negative and positive connotations. One of the negative connotations, from a public health perspective, is that any time you have peer in the title, it’s a kind of outing. You know, if you are a trans peer coordinator, that means you’re a trans person who works with other trans people.
But some of the positives that are associated with peer is that peers have that lived experience. And that’s really, really underutilized. Most providers of HIV services are not people living with HIV. And so utilizing and empowering peers and peer-to-peer interactions is one of the best ways to incorporate lived experience into treatment. It is one of the best ways to use subject matter experts who sometimes may not be degreed. But it’s a way to use that lived experience and acknowledge that folks are subject matter experts in their own lives. And there’s a lot of value that comes with that.
When we talk about empowerment, I think a message that really gets missed is that we—as a healthcare system, as providers of services—have failed to empower people who are living with HIV to take a greater part in their own health care. What I mean by that is, if every person who’s living with HIV achieved viral suppression and maintained it, there would be no new HIV infections, which is essentially an end to the HIV epidemic, right?
However, that’s not the model that we use. We don’t address many of the factors that in public health are referred to as social determinants of health. We don’t address the factors that keep people from becoming virally suppressed. We don’t properly address homelessness. We don’t properly address mental health. We don’t properly address wage equity, employment, or education for people who are living with HIV.
There’s been this model that was set up. Through the years, there was a time when you got an HIV diagnosis, you got a disability check, because you’d be dead in six months or a year. Since that’s no longer the case, how are we empowering people who are living with HIV to live their best lives? What are we doing that’s helping folks to live healthfully between doctor appointments?
‘It’s important to incorporate new voices into the conversation as well, not just the voices who are always speaking the loudest. As public health professionals, we have to take much more of an intersectional approach to our work.’
EV: It seems like you’ve already answered this question, but where do we need to go from here?
TC: I use the term CED: community economic development. Cede power back to the community.
The HIV healthcare system really was created when the community, which at the time essentially was a bunch of gay, White cisgender men of a certain socioeconomic status, created it. And that’s wonderful. That’s also why White gay men aren’t dying from AIDS the way that they were 40 years ago, because they created a system that works for them. And it’s wonderful. Because of their advocacy, we got highly active antiretroviral therapies, which were the first HIV cocktails. Because of them, we have programs like the Ryan White CARE Act.
But because HIV doesn’t look like that today, we have to perhaps dismantle the system in order to create a new one that’s much more inclusive of a lot of different identities and experiences. We need to have policies, procedures, and programs that are much more inclusive of all kinds of different folks. The fact that there are HIV medicines being prescribed that in their research didn’t include Black bodies, that’s problematic.
And so at all levels of HIV engagement—research, of course, and doctors and medical providers, but also evaluators of programs, and statisticians, and folks who work at the CDC—we need to have many more Black and Brown people. It’s also because we share community. I can’t tell anybody that’s White what it means to be Black in America, so that they fully get it. But another Black person understands it. A Spanish-speaking person whose first language is Spanish can articulate that better than someone who took a year of Spanish in middle school. And so, we have to add more value to these lived experiences, and really incorporate them much, much more across the board in how we tackle HIV, pre-diagnosis and post-diagnosis.
Here’s an interesting thing that I think some non-trans folks don’t get yet. Trans people don’t have to just do trans jobs.
At my first job in HIV, I was like, Don’t put trans in my title. Now, in hindsight, I’m glad that they did. But I fought against having trans in my title simply because I didn’t want to limit the work that I do. And I didn’t want folks who are by definition trans but who may not live their life as openly trans people to feel left out. You know, Black women are working in aeronautics and in auto mechanics, and they are teachers and professors, and firefighters. But none of those terms have the word “Black” or “woman” attached.
EV: It’s a journey. One of the reasons I wanted to write about you was a conversation we had a couple of years ago. I thought “cis-gender” sounded weird and didn’t like being called a “cis-gender woman.” And you said, “Well, I don’t like being called a transgender woman.” Oh! Of course not. It was a lightbulb moment.
TC: Let me add some context to that. My trans identity is simply a part of me. And what I tell people is, if we’re picking fruit at my local grocery store, I don’t expect anybody to identify me as that trans woman. It doesn’t mean that I’m not proud of who I am. But it doesn’t matter. At that point, we’re both just two people who want to spend our money on some melon. And until we get to a point that people are just people and we’re all sharing this earth together, how we got to where we are in our adulthood, how we describe our journey and how we got there is less important than how we all share the space. Until that day, you are cis and I am trans.
EV: If you have trans people in a program, but you want to say they’re like anybody else, how do the trans kids know there are trans people there?
TC: Right now, in a lot of organizations, it feels like you’re just ticking boxes. And the truth is, we may have to tick boxes in the spirit of intentional inclusion, until we no longer have to tick boxes. When folks are hired simply because they’re the best person for the job, regardless of the agenda items, of their race, their age and physical ability or disability. Until we get to that point, we do have to tick boxes. We have to make sure that we cover a whole bunch of bases. But that’s what essential inclusion looks like, until we no longer have to do it.
It also goes to why we’re giving pronouns, and we are identifying ourselves, at the start of every Zoom meeting and even in the medical office. It’s one of the reasons why, in my opinion, that should just become common practice. We’re modeling good behavior. Because if we only do it when we think somebody is trans, then we missed out on an opportunity to engage someone who’s trans and we don’t know. And we also missed out on a lot of educational opportunities for people who are not trans.
EV: What do you want to tell our readers, most of them living with HIV?
TC: I want to make sure that people understand that everybody’s lived experience is as valid as everybody else’s. And then, as a community of human beings, it is important to validate other people’s experiences, and honor those experiences, especially when they’re different from
our own.
One more thing I’d like to add: Folks who need the most should get the most.