Milani Varela has taken part in nearly two decades of HIV education and prevention work in Chicago and nationwide. To her, one of her greatest strengths is her lived experience.
An Afro-Mexican drag performer and community advocate, Varela is using her personal story with HIV to empower others to be the architects of their own journey. Her most recent project includes a campaign with Merck highlighting taking care of the whole person.
Varela began her drag journey back in 2009, before there were many spaces for the Latinx community in Northalsted, she said. She began going to the clubs on their 18+ nights and became introduced to the art of drag performances.
Just for fun, she participated in her first competition and ended up winning the first round. Although she didn’t win the competition, Varela said she realized how much she loved the experience and kept up with it.
One aspect Varela loves about drag is the ability to create your own character. She realized she had a “powerful voice to advocate for [her] community,” and her goal became to raise awareness for HIV and connect with other performers.
“I was able to create basically my own chosen family between my friends and then my daughters, and now I have granddaughters,” they said. “…I not only mentor with drag, but also with the advocacy work that involves our communities here in Chicago.”
Most of Varela’s advocacy has centered around HIV education and prevention. She received her own HIV diagnosis in December 2018, 10 years after she started working in the field. One month later, she was diagnosed with AIDS.
At first, they said they felt like they had let their community down—having worked so much on educating youth about HIV prevention. Their life “changed completely” as they needed to learn how to navigate the healthcare system for themselves. They now aim to use those experiences to be a more knowledgeable advocate for others.
Varela’s journey with HIV activism began in 2008 after seeing friends get diagnosed earlier in the 2000s.
“It hit me really hard to know that my friends were now living with HIV and they were so young, they were in their teens still,” Varela said. “I’m like, ‘I don’t want other people to go through what I went through with my friends’ … I wanted to educate people. I wanted to educate myself because I had no idea what I was doing in the beginning.”
She began a youth program and eventually rose in the activism world. Now, she’s lead navigator for essential support services at CALOR, as well as part of Chicagoland HIV Integrated Planning and Action Council and Getting to Zero Illinois. They’ve also presented at the U.S. Conference on HIV/AIDS and lobbied in Washington D.C.
Programs have come and gone through the years, but Varela said a lot has changed for the positive—more campaigns about HIV prevention and research have made awareness more widespread. Stigma has reduced since she began in 2008, with ordinary citizens and celebrities more openly sharing their status.
“That’s one of the reasons why I was open about it,” she said. “I’m like, ‘I can’t carry this heaviness on my shoulders of keeping this a secret.’ So I came out publicly, and then I was able to really, still to this day, help a lot of people just by speaking my truth.”
Most recently, Varela was asked to be part of the Merck campaign “Your Hive of Whole Health,” a multi-year program encouraging people living with HIV to build support networks assisting all areas of well-being. She said she felt connected to the message of focusing on emotional and social health along with physical.
Varela said they were selected to join the campaign through a panel of nationally-known advocates. She said two different people reached out to her—”I [felt] honored. They’re looking for little old me?” she said.
The full campaign launched on the website in September and at the U.S. Conference on HIV/AIDS.
“It’s something that I truly believe in, and that’s what made it even more exciting,” she said. “We’re so much more than our HIV status.”
One of Varela’s most important lessons learned through her career was to be okay asking for help. She described herself as “a very stubborn person,” but living with HIV forced her to realize the importance of having that support system—chosen family, medical care team and beyond.
“It takes a lot of people. That’s what I learned, I have to let myself be helped,” they said. “For so many years, I’ve been helping so many people that I forget to take care of myself. I also realized that people who help others also need help themselves.”