HIV Activists on Organizing and Self-Care in the Trump Era

The 2016 presidential election in the United States spurred many people to step into activism for the first time or to amplify their efforts. But many have been organizing for years. Here's how some longtime community leaders are balancing organizing and self-care strategies.

Tiommi Jenae Luckett
Tiommi Jenae Luckett
Carmen Bradford

Tiommi Jenae Luckett

Steering Committee, U.S. Caucus of People Living With HIV

Positively Trans
The Well Project

What does your organizing look like?

Organizing for me as a person living with HIV in the era of Trump has been innumerable conference calls, emails, think tanks and telephone calls to senators and representatives urging them to stand on the right side of history and denounce these targeted legislative attacks being handed down from the office of the president. It has been signing and sharing petitions. I have been taking notes and sharing information through social media.

How do you practice self-care, especially during these intense bouts of organizing?

Seeing as how I have been organizing behind the scenes, the images that I see on my laptop, tablet and phone can become quite overwhelming. Social media activism is in print and online and the hateful comments that are left can have a crippling effect on one's psyche. At those times, I unplug and go off the grid with the exception of phone calls and texts.

Steven 'Humble' Mangual
Steven "Humble" Mangual
Victoria Law

Steven "Humble" Mangual

Prison services coordinator, Hudson Valley Community Services, Inc. (HVCS)

Volunteer with On the Count: The Prison and Criminal Justice Report WBAI/99.5 FM

What does your organizing look like?

I am the prison services coordinator for HVCS. I volunteer with WBAI 99.5 FM/Pacifica radio, with a specific show called On the Count: The Prison and Criminal Justice Report. I am a producer and co-host and do communications. It runs every Saturday from 11 am to 12 pm.

As prison service coordinator for HVCS, we're contracted through the Criminal Justice Initiative grant of the AIDS Institute. We go inside the six NYS prisons that are in the Sullivan County region. I go in to all six facilities, and we work directly with the PACE program -- the Prisoners for AIDS Counseling and Education program. We provide trainings; we do lectures; we do counseling; and we do rapid HIV testing. More importantly, we do linkage to care and discharge planning for the HIV-positive people who are returning home. I make sure there are no gaps in services; we link to care out here. It's really unique for me because the PACE program is where I first learned about HIV while I was incarcerated. I was a student, then became a facilitator over 20 years ago, so to be back now is full circle.

I am formerly incarcerated. I served 14 years in the NYS Department of Corrections. I've been home almost 10.5 years working in the field of HIV and criminal justice.

How do you practice self-care?

When it comes to myself, it's so much easier to help someone else reach that point, but I try to eat healthy; I try to get as much rest as I can; I do a lot of reading and meditating; my family keeps me focused. I have a beautiful family -- my wife and I have six kids between the two of us, two grandchildren and one on the way. It's a beautiful family, so I make sure that I'm taking care of myself so I don't burn out. I have been there. I take as much time off as I need.

I don't eat red meat; I don't eat pork; I try to stay away from sweets. I don't exercise as much as I should. I try to exercise, but I spend more of my time on forms like meditation. That helps a lot.

Donna Hylton
Donna Hylton
Victoria Law

Donna Hylton

Founder, From Life to Life

Member, National Council for Incarcerated and Formerly Incarcerated Women
Speaker at the Jan. 21 Women's March in Washington, D.C.

What does your organizing look like?

My focus is women, so what does that mean? It means a lot of things, especially in the climate that we're in. The majority of women I know have been incarcerated and experienced violence at some point, if not in their entire lives. I believe it's going to take women being really in the forefront to have a shift in this movement, to bring any kind of change. We're at a critical moment, and it's going to take, in the words of my friend Aida, "ordinary people doing extraordinary things."

It's a lot of outreach, creating events and spaces where we can come together, women and people from all across the nation [can] come together and put our heads together, our experiences together, and figure out what do we do and the responses. Rallies are great, but rallies are not the simple solution. You need organizing. I call myself a "network leader." It's weaving those networks that are there. How do we bridge them, how do we come together?

How do you practice self-care?

Yesterday, I really didn't do anything. Today, I'm not really doing much. Especially since I had this stroke, I've had a little extra care. I walk and meditate, like I just did now to go to the pharmacy. Just take time out. I don't even look at the emails; I will not respond to email because that's work. Phone calls. I really have to be careful in that because, if I'm no good, the movement is still going to be there, but I won't be there.

So, definitely, take time off for self, whatever you need, if it's 10 or 15 minutes during the day.

I definitely think about what I eat and drink a lot of water. I even added some raw vinegar to some water, just a little teaspoon to 12 ounces or eight ounces. I walk, it's my form of exercise and my walking is my meditation. Sometimes, I'll just play music; music is soothing for me. I'll just put on some music and go someplace else in my mind. It doesn't matter [what kind of music]; it can be classical, opera. I just don't like this hardcore hip-hop; it's not for me. I can't take the cursing and the craziness and the calling women names. It's anti- everything I do and stand for, I just can't do it.

Marco Castro-Bojorquez
Marco Castro-Bojorquez
Tapatio Flores

Marco Castro-Bojorquez

Filmmaker

What does your organizing look like?

I am a filmmaker and have been doing the distribution of my film El Canto del Colibri for the past year. My film is about immigration and family acceptance and my HIV/AIDS work with the United States People Living With HIV Caucus. I'm still trying to re-energize Venas Abiertas. My work as filmmaker has taken me to doing community advocacy and empowerment; in the last months I have been working with LGBT collaborations in rural California and, just two weeks ago, we had our first ever Latinx LGBT film festival in Salinas, and it open with my short Tres Gotas de Agua.

How do you practice self-care?

There's a lot of people in my communities suffering as we speak, and let me include myself and use 'I' statements: I am in pain; I feel pretty shitty; I am fearful; and I am angry and, at times, hungry. I know I am not the only one. If this is my picture with all my privileges, I wonder how are my sisters and brothers in the most marginalized communities: trans gender women of color, sex workers, undocumented immigrants, to mention a few.

My friends told me to take care of myself because no one was going to do it, and when I showed up at my family's home, my compadre told me -- you're very skinny and need to eat a quesadilla right now! And that's how my recovery began. So, my self-care looks like an afternoon with my familia on the border and eating pozole, talking a walk in Long Beach with my godson and proudly singing Justin Bieber songs, making the case to my family on why is better to fix the doggie than have a bunch of puppies around, or baking cupcakes with my nieces and, finally, interacting with the dog and the two cats!

The most effective self-care in an emergency moment that works like charm is to listen to a song by JuanGa (Juan Gabriel) -- the best tactic out there! :)

Nestor Rogel
Nestor Rogel
Nestor Rogel

Nestor Rogel

Administrative clerk at Hyde Park Library, Los Angeles

What does your organizing look like?

These days, my organizing looks like individual outreach through case managers, trying to create and build more youth advocates and also trying to reach out to people about HIV criminalization, especially in California because this bill [to reduce HIV transmission from a felony to a misdemeanor] is something that we're trying to get pushed.

How do you practice self-care?

As far as self-care goes, I find comfort in taking the activist approach and [doing] advocacy. Doing something at least gives me comfort.

I like to run. I'm spending more time with my family, running with them, exercising. I keep going, and while I run, it helps me think about what's going on and helps me to sort it all out. Reading really helps me. I like to read historical fiction. I have no [preferred] period. Just any book really.

Rusti Miller-Hill
Rusti Miller-Hill
Linda Steele

Rusti Miller-Hill

Positive Women's Network (PWN), NYC

Coalition for Women Prisoners
Member of National Council for Incarcerated and Formerly Incarcerated Women and Girls

What does your organizing look like?

I am the co-chair of the PWN NYC chapter. Our campaign for this year is reproductive health and criminalization of HIV. The intersection of the work that I do is around incarcerated and formerly incarcerated women. We look at how women are treated during incarceration [from] sanitary napkins to being able to see an infectious disease doctor, making sure that they have medications that are comparable to the medications received by individuals here in the community and that they're getting their proper follow-up care. We look at domestic violence and how HIV can be a weapon in a relationship for a woman, whether she's incarcerated or not. The intersection of the two plays out sometimes.

We [PWN NYC] meet on a monthly basis at GMHC. We have a core group of women that we work with. We're constantly looking to do outreach and bring women in from the community to join us on an advocacy level. We look for allies; we're looking for allies to be part of the conversation because those are the ones who are going to support you no matter what, whether it's HIV or women's rights at the forefront. You definitely want to build your membership with allies and those affected so that the voice becomes louder, bigger and more formidable as you move from level to level in your advocacy. Even with my work with the incarcerated women, that's a point that I talk about: HIV and women and the importance of women getting the medical assistance that they need while they're incarcerated and, then again, making the reconnection so that their rights are honored, their body is honored, and they're not in the position where that becomes the weapon of choice in a volatile relationship.

How do you practice self-care?

I'm still learning how to do that. Honestly. My husband complains, "You never slow down!" We do date nights; there are times when we don't talk about work. I love to read, I spent a lot of time diving into a book that can take me in a whole different direction. If it's a good read, I'm reading it. That's an escape -- sometimes it gives me ideas about something we can do, but oftentimes it's just to get away and to relax my mind, to breathe.

I do yoga breathing. I'm famous for telling people stop and breathe, but sometimes I have to remind myself to do that, as well. It's a work in progress. I don't have any set routine.

I have a friend who does skate-aerobics. My work schedule has changed, so I was thinking that I could carve out the time to go. That's something that I'm looking forward to. I used to roller skate all the time with my kids. Now they're big and don't want to do it anymore, and I'm like, "I can go back to it and have a good time." It's always good for some laughs, and it's good for the body, and so that's going to be my go-to.

The text has been lightly edited for clarity.