Story by Chris Graham

Shawn Decker had thought that the old wounds from the Waynesboro school system’s decision to expel him from school in the wake of his 1987 HIV diagnosis had long since been healed.

But the response to his telling of what he had been forced to go through at the end of his sixth-grade year in his book My Pet Virus: The True Story of a Rebel Without a Cure shows that while the bandages from the old wounds have been removed, the sensitivity is still very much there.

“For me, when the book came out, and The Hook did their cover story on it, and they contacted the guy who was the superintendent back then, and he said he had no recollection of what I was saying, that I was never excluded from anything, I was just like, Seriously?” says Decker, a hemophiliac (he prefers the term “thinblood” that he coined as a child to the medical term, for those keeping score at home) who contracted HIV through a blood transfusion.

My Pet Virus

, published last year by an imprint of book-industry biggie Penguin, has received attention in media markets far and wide - but, curiously, has basically been ignored in the hometown press.

You want to think that that silence is just coincidence - but then at the same time, you probably also have to look at the responses from those who were part of the decisionmaking process in the school-system central office at the time that Decker was facing having to fight his way back into school to the charges that Decker laid out in his book as being revelatory to some degree of the mindset of Waynesboro officialdom in their own right.

What’s most interesting about this story is that while some of those involved in the Decker story have apparently found it hard to move on, Decker himself has - to the point where he has committed his life to being an advocate for HIV awareness. Decker and his wife, Gwenn Barringer, travel the country speaking to audiences about their relationship - including the ins and outs of their sexual relationship as a couple that includes one member who is HIV-positive and another who is HIV-negative.

“When we speak, initially, people are kind of like, Oh, my God, they’re together, and he’s HIV-positive, and she’s not,” Decker says. “But it’s kind of funny - at the end of that hour, after answering questions and everything, people realize that we’re the ones in a safe relationship, and it’s their friends and in some cases them that are risk for a lot of these things, because they don’t know their partner’s status, because they don’t ask, and because they don’t use protection.”

Their travels take them primarily to college campuses - where Decker’s approach of being as open and up front as possible about life as a self-styled “positoid” breaks down the barriers that otherwise inhibit dialogue about HIV.

“I think when I realized that I wanted to speak about HIV, I kind of knew that I could do it in my own way - and it was really important for me to not change who I was just because I was going to start opening up about this. Because a lot of what I’d seen in terms of education was just heavy-handed - and a lot like the things that in high school and junior high school that you just tuned out. As a young person, you’re always being told what not to do - so I was like, You know, I want to do it in a way that I’m comfortable with and that people can get something from,” Decker says.

“From day one of educating, it was important for me to be myself - and to show that, hey, I’m somebody that you could probably be friends with. I didn’t want people to be able to turn me away as easily as they could, say, a teacher or somebody in that sort of authoritative position. I never wanted to approach it that way,” Decker says.

Decker views My Pet Virus as a continuation of his efforts to promote awareness of HIV.

“One of the things that made it really easy to write about the experiences that I’ve had in my life, and particularly the experiences surrounding my HIV diagnosis, is the fact that since the age of 20, I’ve been speaking about it,” Decker says.

“I’ve been interviewed before, the whole thing’s been written about - it’s been in print, it’s been on TV specials, things like that. To me, it’s kind of like the story’s been out there - but the book was my opportunity to really write it in my own voice and write it from my own perspective, as opposed to somebody asking questions and filling in their own narrative in terms of how they want to write a piece on me.
“I think people with HIV are essential in this fight - particularly those who are in committed relationships where they’re effectively preventing the spread of HIV. I wish there were more couples like us out there doing this,” Decker says.

Decker has been on the front lines of this battle since 1996 - that was when he began making appearances on the speaking circuit, and when he launched a website to serve as a forum for getting his message about HIV awareness out to a worldwide audience.

“We’re much further along with this now than we were 11 years ago,” Decker says. “But what’s weird about this is that when I started writing about my experiences, it was at a strange time to be starting HIV education - because it was right around the time when the combination therapy came out. So there had been sort of a lull in HIV reporting, and then it was all over the news that treatments were available, HIV wasn’t a big deal anymore, it was going to be a manageable disease. And so I kind of started when HIV was becoming not a cool cause anymore - because the perception of mortality wasn’t there.

“Now, 11 years after first speaking out, there’s so many things going on. Student groups are doing HIV-AIDS peer education. There’s the ONE Campaign, the Red Campaign. It’s kind of cool to see it come back around, and to see that people are taking it seriously again,” Decker says.

Thinking back to the reaction to his book in his hometown - the silence, the denials - Decker understands the reluctance of those around him to come to terms with HIV.

“Before I started talking about HIV, I really kind of ignored the HIV thing,” Decker says. “I didn’t really let that be a part of who I was - because I didn’t really know how to fit it in. And part of that was my own issue with not knowing how to explain it to people - and I didn’t want to make people feel uncomfortable.

“You know, what are people supposed to say when you disclose that - are they supposed to treat you differently? Are they supposed to be so caring to the point where you’re uncomfortable? Are they going to be not caring enough?”

But at the same time, as much as he understands the sensitivity on the issue, “I mean, really, it’s been 20 years now,” Decker says.

“No one would fault anybody if they said, You know, back then, we didn’t really know how it was transmitted. Parents were scared. They were worried about their students. Really, the way we handled it was the only way we could think of in terms of not causing mass panic. And everybody would be like, Yeah, that’s reality. That’s probably how they did have to handle it back then in certain instances - maybe not the best way, looking back,” Decker says.

“People deal with things different ways. But it’s just amazing to me that I’m 31 now, I’m over it. For me, I was over it back then in terms of getting on with my life and trying to get my social life together and trying to do as best as I could in school - even though I didn’t take my studies that seriously after my HIV diagnosis. But it’s funny that as somebody in his early 30s who went through that stuff, who has a really healthy attitude about it - it was like, Whoa, here’s somebody who’s much older, and this is how they’re acting about it,” Decker says.

This story does have something of a happy ending - Decker has been invited to give the commencement address at Waynesboro High School at the school’s graduation exercises in June.

He’s definitely come a long way from being bounced out of school as a sixth-grader - and if you ask Decker what the future holds, he’ll tell you that he has a lot left to do.

“It’s funny - people’s perceptions of me as somebody who’s been living with HIV for so long, they kind of think, Oh, you have sort of a limited future. But it couldn’t be more opposite. I kind of feel like it’s wide open,” Decker says.

“I don’t get too cheesy and say that there’s a reason, and everything’s meant to happen. But I definitely remember the feeling that I had the night that I decided that I wanted to talk about HIV - and I knew that my life was going to change. I was very excited about that - and still am,” Decker says.

“I’ve found a niche - I’ve found a way to use my personality to educate about this issue. And I’d feel like I wouldn’t be doing what I was supposed to be doing if I wasn’t out there doing this stuff,” Decker says.

Filed under: 7-April 2007 Issue