Activist With HIV Fights To End Stigma
Each week, Weekend Edition Sunday host Rachel Martin brings listeners an unexpected side of the news by talking with someone personally affected by the stories making headlines.
Reed Vreeland was born with HIV, which means he has struggled for most of his 27 years deciding how and when to inform people about his illness. His mom was infected, but his dad was not.
Dozens of states criminalize HIV exposure, or perceived exposure, through sex, shared needles or, in some states, exposure to "bodily fluids" that can include saliva. Reed works for an organization, the Sero Project, that fights these state HIV criminalization laws.
Vreeland has very clear memories about the day his dad told him about his HIV. "I immediately just started crying, because we'd read in our first grade class a book about HIV and AIDS," he tells NPR's Rachel Martin. "I remember the first thing I thought of was 'Oh, I'm like the kids in the book.' ... And the book was about AIDS in Africa and about kids in Africa dying of AIDS."
His own mother died of AIDS when he was 10, and "the pain of losing her was even more intense," Vreeland says, "because I knew I had what she had." She had many complications in her last few years, and grew extremely weak. "I could beat her in an arm wrestle as a 10-year-old and she was just so fragile. It's just so hard to see a parent in that state and then know you could be next."
In 2006, in college, Vreeland met a woman with whom he had an incredible first date. At the end of it, she ran toward him and puckered her lips to kiss him, and in that moment, he had a decision to make about how to handle the information about his status.
"I felt the stigma, I felt the fear," he says. He knew that if he told her about his HIV, it could become fodder for the campus rumor mill. So he opted to kiss her on the forehead, much to her confusion.
"The following day we had a deeper conversation, and I disclosed to her that I was living with HIV." He describes it as a huge leap, and a huge investment of trust in her. Later, they shared "the most romantic first kiss" Vreeland has ever had in his life, and they began a great relationship — they're now married.
His wife, Vreeland says, is more the exception than the rule when it comes to how people handle his HIV status. "The stigma you face, still, with medical professionals is very significant. And you constantly feel you're being judged," he says.
Together, they see a future with a family, and Vreeland plans to continue his work as an activist on behalf of people with HIV. It's time, he says, "to force society at large and our medical establishment to confront this issue and stop making people living with HIV carry the full burden of stigma. We're not going to do it anymore."
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REED VREELAND: I found out I was HIV-positive when I was 7 years old. I was told by my dad. He actually took me out to a really, very scenic location. I remember a picnic bench and a lot of grass around.
RACHEL MARTIN, HOST:
The scene stood in sharp contrast to the news Reed Vreeland had just received. Vreeland was born with HIV. And since the day he found out about his illness, he has struggled with when and how to tell people in his life about his HIV-positive status. He now works for an organization called the Sero Project, which fights HIV criminalization laws which exists in dozens of states, laws that make it illegal to expose someone's HIV.
Reed Vreeland is our Sunday Conversation. And we begin back in that moment, in that park, when Vreeland's dad told him about his condition.
VREELAND: I immediately just started crying...
VREELAND: ...because we had read in our first grade class a book about HIV in Africa and kids in Africa dying of AIDS. And I remember the first thing I thought of was, oh, I'm like the kids in the book. Then it was, oh, I'm going to die. And then, oh, we read that book in class because of me.
VREELAND: And from then on, you know, thinking about my status and, you know, mortality and all those fun things has been a part of my life. And HIV has been a part of my life.
MARTIN: Your mom, we should say, eventually died of AIDS. Your dad however was not HIV-positive. When she died, obviously it's a huge loss in your own life, how did it affect how you thought about your illness?
VREELAND: The pain of losing her was even more intense in a way because I knew that I had what she had. It's just so hard to see a parent in that state and then know that, you know, you could be next.
MARTIN: When did you first start to feel that your status, as someone who is HIV-positive, that it was something people were judging you for?
VREELAND: I think my first girlfriend, I was in middle school - I guess I was maybe 12 or 13. And we were doing of it but holding hands, really. And then we just had a very sweet kind of budding romance. She was really lovely. And I found out that her mother had banned her from seeing me. And so that ended our relationship. And after that I didn't have any relationships for over five years. I was 19 the first time I had any intimate contact with anyone, including a kiss.
MARTIN: I understand you went to Bard in Upstate New York and you met a woman in 2006, who became a very important part of your life. Why were you ready in that moment to have an intimate relationship with someone?
VREELAND: This was one that I was initially very scared about because I kind of saw how promising it was going to be. I remember our first date. We just had this amazing date and talked about everything - everything, everything - except for my positive status. At the end of our date, she went to be her friends and and went into a cafe. Then she just came running down the street and she kind of puckered her lips sweetly to come and kiss me. And it was at that moment that I had to make a decision. Am I going to kiss her? Am I going to disclose to her?
The extreme awkwardness that I was put in at that moment was really painful. And I felt the stigma. I felt the fear. I was very aware that if I told her my status it could either go around school in an uncontrollable way, and that could really affect my time there and make it painful or, you know, make people more involved in my business than I wanted them to be. And so at that moment I made a decision.
I brought her head forward and just gave her a really sweet kiss on her forehead. And she just looked so confused and dejected. And then, the following day, we had a deeper conversation and I disclosed to her that I was living with HIV.
MARTIN: May I ask you? Were those words hard to conjure up in that moment?
VREELAND: I think for me one of the things I was thinking about, is this a safe place to disclose? Is she someone I can trust with this information? But I knew that I wanted that trust with her in terms of something longer term, and that if I didn't tell her now it would eventually come out. So I really wanted to take a huge leap and a huge investment trust in her - and I did. And so, I told her.
You know, she went back to her friends, and again, she couldn't tell them the full story, right? She just said, we had a conversation, it was great. And then she came back in my room and she goes, they're asking why we haven't kissed, why haven't we kissed? This is so awkward. What do we do? What do we tell them? I don't wan to tell them your status. I don't want to expose that to all these people and, you know, I don't...
And at that moment I just gave her this amazing first kiss - really, the most romantic kiss I've ever had in my life - in the doorway of my room, and that was really the start of our relationship.
MARTIN: So she took the news well.
VREELAND: She did. And I can't tell you how uncommon that is. It's extremely tough. The stigma in negotiating relationships and the stigma you face, still in with medical professionals, is very significant and you constantly feel you're being judged. I think the fact that we've been able to have an amazing relationship has been, I think, a tribute to her and to me and that we've made it work, and that I've been able to explain the pace that I felt comfortable going at and that she did. And I explained, you know, transmission routes to her and, you know, where I felt comfortable in terms of those routes and the risks I was willing to take and the risk that she was and all that.
MARTIN: You and your wife have talked about having kids. That's something that you want?
VREELAND: Yes. When I look at my future, a family, I hope is part of it. My wife is ready right now. I'm - I see a future with a family, I think that's where we are. But moreover, I see myself having kind of gone from being a writer to being an activist. And I see myself kind of continuing to thrive and continuing to work with people, and continuing to force society at large and our medical establishment to confront this issue, and stop making people living with HIV carry the full burden of stigma.
MARTIN: Reed Vreeland is the communications director at the Sero Project, which advocates for people with HIV. Thank you so much for talking with us and sharing your story, Reed.
VREELAND: Thanks so much, Rachel.
(SOUNDBITE OF MUSIC)
MARTIN: You're listening to NPR News.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.