There's one memory of his Aunt Joanne that Jai Rodriguez will never forget.
His aunt took him to his first audition when he was a young kid growing up on Long Island. She was a "very theatrical, fun-loving person," Rodriguez said, and pushed him to pursue acting. And because auditions are professional events, little Rodriguez showed up in a suit.
The thing is, Rodriguez was trying out for a part in a local production of Runaways, Elizabeth Swados' 1978 musical about runaway children living on the streets. All the other child actors, who were mostly white, were wearing rags to fit the roles being cast. The awkward learning experience brought his aunt and him closer together, Rodriguez said.
Rodriguez described Aunt Joanne as a brave person "who took chances other people wouldn't take." And that spirit, he said, didn't fade away after she told her family that she had AIDS in the mid-1990s. Even as she became sicker, Aunt Joanne continued to cheer people up with her boisterous personality.
"She really did choose to live every day like it was her last," Rodriguez, the former Emmy Award-winning star of Queer Eye for the Straight Guy, told TheBody.com. "She was this energy and this ball of light everywhere she went."
His aunt died in 1996. The following year, at the age of 18, Rodriguez starred as Angel Dumott Schunard in the Toronto, Canada, cast of Rent, the musical loosely based on Giacomo Puccini's opera La Bohème. He later reprised the role on Broadway. His Aunt Joanne had a significant influence on how he played the HIV-positive character, Rodriguez said. In turn, his relationship both with the role and his aunt allowed him to better relate to and connect with people living with HIV.
A Reminder That HIV Doesn't Make a Person Less Human
There's one scene in Rent, Rodriguez recalled, where Angel and some of the characters sitting in a support group begin to sing the number, "Will I?" One particular lyric, he said, stands out: "Will I lose my dignity? / Will someone care? / Will I wake tomorrow / From this nightmare?"
That refrain reminded him of a moment with his aunt, Rodriguez explained. One Sunday, he and his family were getting ready for church. His aunt, living in a hospice, was coming along, and his mother gave her what she thought was an appropriate outfit: pink sweatpants and a pink sweatshirt. When Aunt Joanne opened the box, she began to cry.
His mother asked why, to which Rodriguez's aunt replied, "You're treating me like a patient, not a person."
"It stuck with me," Rodriguez said, "to always respect people and to always understand [that] a diagnosis or a status does not speak to someone's dignity or integrity or who they are as a person. It's just their status."
His family's history, as well as his experience with Rent, brought him into the world of HIV advocacy. Rodriguez first began to attend events put on by the New York-based nonprofit Broadway Cares/Equity Fights AIDS, where he helped raised millions of dollars towards HIV-related causes. Over the last 20 years, Rodriguez has been a part of hundreds of campaigns and charity fundraisers, including the annual AIDS Walk in New York City. He told TheBody.com that he participates in at least five to 10 events a year and has worked with groups such as the Richmond/Ermet Aid Foundation of San Francisco and The Life Group LA.
Though his HIV advocacy work spans a wide spectrum, Rodriguez said he has found New York's AIDS Walk particularly gratifying. Rodriguez's aunt was living with AIDS during a time of uncertainty, when people affected by the virus did not have wide access to treatment or understand how treatment worked, he said. But hearing people share their stories at AIDS Walk New York events opened him up to "more hope and optimism," Rodriguez told TheBody.com.
A Focus on HIV Advocacy Among People of Color
Still, despite advancements in treatment and prevention, Latinx and black communities continue to grapple with alarmingly high infection rates. The Centers for Disease Control and Prevention (CDC) estimates that if current rates persist, one in four Latino gay and bisexual men will be diagnosed with HIV during their lifetimes.
"That number gave me great pause," Rodriguez told TheBody.com. "Now that I know those numbers are spiking in my own community, that's personal to me."
That's why Rodriguez recently joined Positively Fearless, a public awareness and education campaign launched last year by the pharmaceutical company Janssen. The initiative aims to inform and empower black and Latinx people to take control of their health.
A confluence of barriers can make HIV prevention and treatment access a challenge for black and Latinx men who have sex with men (MSM). Racism and homophobia, as well as anti-immigrant attitudes and a lack of Spanish-speaking providers, keep Latinx MSM from seeking medical care, let alone getting tested. HIV bias also keeps black and Latinx people from talking openly about the virus, whether with their families or with health care providers.
"There's still a lot of shame around not just homosexuality, but also about being positive," Rodriguez told TheBody.com. "That's why the numbers are specifically rising in the Latino and African-American communities. That shame is innate in our cultures."
Rodriguez sees how this shame plays out within his own family. Despite his best efforts, Rodriguez said, his family continues to have a hard time talking opening about HIV or AIDS and is hesitant to become involved with his philanthropic advocacy. "That doesn't mean I'll stop pushing or stop asking," he said. "[But] they are still grasping with the notion of how to honor someone's legacy and pass any stigma that might be around the word 'HIV'."
But silence, Rodriguez said, is what keeps many Latinx and black people from accessing the information, resources and support they need to start and stay on treatment. To see that situation improve, Rodriguez told TheBody.com, people within and outside the Latinx communities need to tackle the issue head-on -- "to actually look at real facts and have real conversations," he said. "They may be awkward and tricky and uncomfortable at times, but we need to deal with it."
"Keeping it hidden in the dark is never a solution for any effective change. Not just for infection rates, but the stigma around it," Rodriguez added.