Layers of resilience

In the early 1980s, I was living in Los Angeles when I began to hear rumors within LGBT communities about an illness. The media and the health care system were calling it an unknown “gay cancer” that was afflicting mostly white males. We didn’t know much about it in the transgender Latinx immigrant community. As a transgender teen, I didn’t see this as relevant to me.

A few years later, some of my transgender friends started to become ill and quickly died from the new virus, just recently christened as HIV. I began to pay attention. It didn’t matter if they were sex workers or substance abusers or not—this virus was spreading regardless of gender identity, race, social status, or sexual orientation.

Thanks in part to the fictional television series Pose, younger generations can now get a sense of what our communities went through during the HIV pandemic at the moment it all began. Things haven’t changed much in almost 40 years. Transgender people are still at high risk of acquiring HIV; systemic violence, discrimination, substance abuse, homelessness, and incarceration make us even more vulnerable. Now, the same is happening with the coronavirus pandemic. Many people are dying of COVID-19 and, once again, transgender communities are severely affected as we continue to fight for our place in a cis-heteronormative society.

In Mexico City, where I have lived for the past nine years, this new pandemic has given visibility to the great inequality that trans-identified individuals face in a society and a system that see us as disposable. For example, as COVID-19 began, the hotels where trans sex workers work and reside were closed down, leaving this group, which includes trans migrants and trans mature women, in the streets with nowhere to stay. Thanks to local and international organizations along with local activists, we were able to support our sisters who were suddenly put in an extremely precarious situation through no fault of their own.

Like me, there are other trans women who lived through the early HIV pandemic and now are fighting to stay alive during COVID-19. I recently spoke with two longtime trans activists living and aging with HIV who model that struggle to protect and uplift their own lives while advocating for human rights, justice, and wellbeing in their communities. Their testimonies bring to light the realities of living and aging with HIV that we may not see in any television series.

Kenya Cuevas is an award-winning human rights advocate from Mexico City. She founded several programs and organizations helping transgender women in vulnerable situations—including Casa Hogar Paola Buenrostro, a shelter for trans women experiencing homelessness. The shelter is named for one of Cuevas’ friends, a young trans woman whose murder she witnessed.

Nadine Ruff coordinates the Aging Positively program at A Place to Nourish Your Health (formerly AIDS Project New Haven) and is a mother and grandmother based in New Haven, Connecticut.

You are a trans woman, an activist, living and aging with HIV. What does this intersectionality look like in your daily life?

KC: I´m also a woman who spent time in prison and dealt with substance abuse for 20 years. I´m aware that not everyone can come out of these situations of vulnerability. Truly, these situations are what made me a humble person with a different vision in life: to protect and care for others.

My life experiences helped me to have a different perspective regarding institutions, and educate them to better serve my communities. I believe that my pain and my vulnerability kept me focused to be able to help other trans women and to give them hope.

To have lived through these experiences has given me a resilience to generate seeds of hope without making me feel I’m better than others. My intersectionality has helped me to have tenacity, to build humility around me, and also to be strategic on how to better serve these disadvantaged communities.

NR: I’ve done sex work, I’ve been in prison, I’ve been homeless. All these experiences I lived through are what motivate me to try to save another individual from going through what I went through.

I try to break these identities down little by little. If I was to think about all the things I have to face every day in society, I’d probably give up. I have come to terms with the fact that I do not live with HIV; HIV lives with me. I’m more than HIV—I’m a sister, I’m a parent, I’m a student.

I don’t look at the things that I go through in society; I look up at how these experiences are going to help me to save the next transgender person coming behind me.

As a long-term HIV survivor, what are your thoughts on living and aging with HIV?

KC: It’s not the same, to be a young person diagnosed with HIV, and now being an older person living with this virus. I have been living with HIV for 34 years and I’m one of the survivors from my generation. I’m glad I can talk about it, and tell you that I’m undetectable.

I can remember that, ever since I’ve been living with HIV, I have never felt like I was living with something different or strange. I have seen more than two hundred people die from this virus—so, I feel very privileged and blessed to be a mature woman that lives with HIV.

NR: As I’m aging I try to center myself on some positive aspects. I try to take care of myself and take my medications. I look at other people who live with other chronic illnesses, not necessarily HIV, and I try not to let that deter me or make me feel negative about what I’m doing. HIV is a part of who I am. As I’m aging and living with HIV, I know I have to stay tuned in with my doctors and my medications, because I know my body better than anybody else.

As we know, now we are going through the COVID-19 pandemic. How do you envision the future for transgender women who are living and aging with HIV?

KC: We still have a lot to fight for—our human rights, for example, to be accepted in this heteronormative society. The future for us trans people living and aging with HIV is desolate. I see the government’s posture of total abandonment—and not only for us trans people, but for communities in vulnerable situations. We trans people have no recognition, nor the same rights, and we’re still being limited in society because of our gender expression.

I see this new pandemic being used as a political and economic strategy by governments to control us. Unfortunately, we transgender people living and aging with HIV are the most vulnerable and forgotten community. We must continue fighting and not let our guard down.

NR: have to admit that right now is a scary time for those of us who are aging—especially for us transgender people living with HIV. We are dealing with loss because of COVID-19; we’ve seen friends and family die this past year. 

This pandemic takes me back to when I was diagnosed with HIV. What I went through trying to stay alive—and now all of a sudden COVID-19 comes. I just hope we can survive this new pandemic.

Now they are telling us there’s a vaccine for COVID-19—and we have had HIV for almost 40 years and there’s no [effective] vaccine? That doesn’t sound right. They might be just testing with us to see if it works. It’s like when AZT came out: I took it and it made me very sick; I had to stop taking it. It killed many who were trying to survive AIDS. It might be the same thing with COVID-19; our lives are at risk once again. [Editor’s Note: Vaccine skepticism and medical mistrust have valid, understandable origins, as Ms. Ruff’s comment makes clear. Still, it is important to note that studies, some of which included people living with HIV, have shown COVID-19 vaccines to be safe and effective in over 40,000 people studied. Further, while HIV and the new coronavirus are very different viruses, some researchers are hopeful that new processes that led to a COVID-19 vaccine in record time will have a beneficial impact on HIV vaccine development as well.]

What message would you like to send out to new generations—to our transgender youth?

KC: To love each other. Love transforms and changes people. With love there can be empathy and solutions. There can be harmony.

We know that within our trans communities, violence is rampant. Therefore, with love, forgiveness, understanding, and solidarity, the new trans generations will be better. We must educate them and show them how to believe in these values. Our greatest justice [in the face of violent systems] will be for us transgender people to be happy.

NR: I understand that people don’t see us as a significant part of society. In other words, we have to do the work that no one else wants to do, for example, we have to rely on sex work to survive.

My goal in life is to shine a light on individuals like myself to teach them that there’s a different way to make it. I’m not putting sex work down, but there are other opportunities we must consider—and take them. Sex work is not going to give us security. That’s one of the reasons I put myself through school—I wanted to do things differently.

I want the new generations to know that education is the way to go—education opens doors for you. There are more opportunities for you as an individual, and for you to do something positive for your community.