“Disclosure doesn’t have to be a scary place”

ETAF Ambassador Kelly Gluckman interviews politician Bob Poe

Many of us who are living with HIV choose to remain in the shadows because of the stigma that goes along with this virus. The prospect of becoming public as HIV positive can be a really scary thing. Stakes are high with possible social and professional repercussions and for so many of us, staying in the HIV closet is the safest bet. Although we are not our virus and the truth is that it’s really no one’s business except perhaps our sexual partners, many of us do decide that it’s worth it to come out and tell the world.

Recently, I had the opportunity to speak with Bob Poe, who made the courageous decision to go public about living with HIV while running for the U.S. House of Representatives in Florida’s 10th district this November. According to his interview in Watermark Magazine, if Poe is successful, he will be “the first openly HIV-positive person elected to Congress.”

I was honored to have him share his story with me.

Kelly: So I know you’ve been HIV positive since 1998, how long did you consider being public about your status?

Bob: When I was thinking about running for Congress, disclosing my HIV status was one of those things that sort of weighed on my mind and I thought that I might have to do it.

Kelly: Was there a defining moment?

Bob: There were a couple. It was one of those things that sort of happened slowly, then all of a sudden, you know, you get to that tipping point. I was at the multi-cultural center here in Orlando that does a lot of work in the Haitian, African American, and Hispanic communities in central Florida. A woman was telling me about the spike in diagnoses here. I had asked her how many people she thought had been exposed to the virus but didn’t know and weren’t tested. What I found out was that stigma and shame were the biggest obstacles preventing people from getting tested and treated. There was this woman that I met when I was out campaigning. She was newly diagnosed and thought she had a death sentence. I tried to share with her that she didn’t. I tried to help her find resources that she desperately needed while living out on the street. So I tried to give her some direction, but at that point, what I really wanted to do was just give her a hug.

Kelly: And tell her that she’s not alone.

Bob: Yeah, and I couldn’t! And it still bothers me. So then I realized that this is something that is bigger than me. It was something that was really important for me to come to realize. If I’m in a public position, then I have some additional obligations and responsibilities. I need to be part of the solution and not part of the problem.

So once I made my decision, then I had to figure out the right way for me to do this. I needed to figure out the what, when and how and all of that. That took me another couple weeks to figure out. I had people telling me in my political circle, “No, why don’t you wait until you get elected. This is going to cause a problem in the campaign. It will distract everything that you’re doing. You’re just going to be the ‘HIV’ candidate.”

I had to get to the point where I could say to myself and everyone else that if that happens, then so be it. If it craters the campaign, so be it. This was more important than my political future. I was fortunate enough that I knew a writer who had handled my coming out story a few years back. He handled a lot of issues around my ‘coming out’ with mindfulness and sensitivity, including being a survivor of childhood sexual abuse, alcoholism, drugs and all of these dark things in my history. He handled it with respect and grace and dignity. So I was able to call him and ask him to write this piece and luckily he said yes. It gave me the confidence that my story would be handled with respect and that it wouldn’t be sensationalized.

Kelly: I can relate to wanting to feel safe. That’s really important. When did your video and announcement come out, what was that process like for you?

Bob: The video was actually not planned; it was a last-minute decision as I had my team in place getting ready for this. And yes, my anxiety meter was definitely over in the red zone.

I had no template of how to do this, no one in politics had done this before. With other things I’ve done, you could stand on other peoples’ shoulders before you who’ve blazed the pathway and the trail ahead of you, but I had nobody in the political arena. So I was out there on my own, and I was very anxious and didn’t know what to expect. One of the guys on the conference team said: “you know we should do a little something on your Facebook to send to your supporters, and that will guide them to the printed piece.” I was uncomfortable with that idea and Kevin said to me, “Ok, here’s what we’re going to do, we’re going to do five takes, and five takes only and if none of them work for you, then it’ll hit the trash can.” It was on the fifth take that I did the piece that landed on the page. I’m astounded at how far and wide it’s gone. People from all over the world have contacted me, you know. Except for Antarctica.

I’ve had people who have come up to me and even some public figures people who have shared with me that they are living with HIV and just haven’t had the courage to come out with it.

Kelly: The first thing my family said to me when I told them I had been diagnosed was never to tell anyone. And it was already too late at that point. I thought the same thing, that this is bigger than me, this is more important than me. And after I did my MTV documentary special, I had people contacting me from all over the world too.

Bob: You can’t even imagine! You just never know where things are going to land and how they can be meaningful, even life-saving, to someone. And it has been meaningful. And that’s been rewarding.

Kelly: What is your experience sharing your story with people who are HIV negative?

Bob: That’s been an interesting experience as well because some of the most shocked responses have come from close friends who didn’t think they knew anyone living with HIV. So they had a different vision of what someone living with HIV looked like or acted like. It’s like, “Oh wow, I couldn’t tell!” or, “You don’t look like someone with it.”

Kelly: I get that ALL the time!

Bob: Because it’s that otherness. And there are all kinds of stigmas that need to be erased and obliterated and that we as a society need to get rid of. There is stigma around race, sexual preference, gender identity, gender expression, etc. All of these stigmas are stumbling blocks for people and are very unhealthy. I learned a long time ago when I was in recovery that it’s our secrets that make us sick. Being a survivor of childhood sexual abuse, I remember my abuser saying “you can’t tell anyone” and still to this day I can hear him say that to me and that made such an impression, an awful impression on me. Because you can’t un-ring the bell, you can’t un-tell someone.

Kelly: Powerful, thank you so much for sharing. Has being public about having HIV affected your campaign at all?

Bob: Not at all. Thankfully, It’s been a non-issue. One thing that affects me personally as I go out and share my story is that I can tell who has a personal connection with HIV. I can tell by a person’s facial expression and body language, how it changes as soon as I bring it up, that they are either living with HIV, they have a loved one living with HIV, a family member, or a friend. When I had my staff meeting the afternoon that I was going to announce my HIV status, one of my campaign workers came up to me to let me know how thankful she was, because she was living with HIV.

Kelly: I’ve experienced MUCH more positive than negative.

Bob: I think that there’s a level of acceptance today that I can’t imagine was true many years ago, particularly in the 80’s when there was so much fear. I mean, there’s still a lot of ignorance, and I mean that in the kindest way, just lack of knowledge and misunderstanding. But my experience is that people have been very compassionate and understanding. I’ve had many conversations with long-term survivors, people who have been living with HIV for 30 plus years telling me about how things have changed for them since that time period.

Kelly: Once you get elected, are there any HIV-focused policies you would like to introduce?

Bob: I think the number one thing is beginning to start a conversation. To have somebody who’s in a position that can really talk about it from a first-hand experience. To be at that table and put a different face to what HIV is and isn’t. To be able to take that otherness and stigma away. That’s a huge thing, because once we get at stigma then people can begin to talk about it.

We have everything available to us to eliminate this as an epidemic. We just don’t have the political will power or the determination to actually get it done.

Kelly: People will ask me how I got it and before when I first got diagnosed, I would tell people the sob story of “oh you know, I got it from my boyfriend who lied to me and cheated on me, but over time I became stronger and would just say “I’m HIV positive” and the first question is always “how did you get it?” and my response is always “I had sex” at the end of the day that’s just it. It takes just one person one time to contract this and anyone who has had sex is at risk.

Bob: And then there’s the shaming that goes on. You know, some people who are either straight or gay will look down on IV drug users and vice versa, some IV drug users don’t want to admit their status because they don’t want to be looked at as gay. So you’ve got this shame that’s going on. My answer to that question is always, “Well we all know by now how people are infected and specifically what happened is really irrelevant at this point.” It’s what you do about it. What do you do about it? Are you getting tested? Are you getting treated? Prevention is important, but at the end of the day, it’s the testing and the treatment that’s going to end the epidemic.

Kelly: My last question for you is, what is one thing you want to leave in people’s minds as an HIV advocate?

Bob: I want to say that if people feel like the time is right for them, to share their status, that there WILL be people there to comfort them. Disclosure doesn’t have to be a scary place.

Being open about one’s HIV status is one of the only ways that we can change the vision that people have of this ‘otherness’. I feel we need to inform more people that HIV is an equal opportunity. It doesn’t matter who or what you are: gay, straight, male, female, black, white, brown, old, young, rich, poor, educated or not. HIV is here, and if people are properly treated, if they get tested and connected to care, there really isn’t anything to fear. HIV is a very manageable condition and as Bob said, “Disclosure doesn’t have to be a scary place.”