Magazine Stories Featuring Bob Bowers aka One Tough Pirate

Bob Bowers, who appears on POZ’s May 2006 cover, tours the country speaking to students through his organization, HIVictorious.

How did you get involved with public speaking?

When I was diagnosed, I was living with my girlfriend, and we were both using IV drugs. I didn’t get a ton of support right away from my friends and family, so I went to the AIDS Project Los Angeles. I was one of their first clients. Someone there recommended that I go speak at a high school. It was weird standing on a stage and saying I have AIDS. But the students gave such a warm response to something that was supposedly so shameful. I realized sharing my story was empowering, so I kept doing it.

Did you date much after your diagnosis?

I broke up with my girlfriend, who had stayed negative, and for the first year or two, I felt dirty or shameful. But eventually, I realized I could kiss and have intimacy just like anyone else. But I was still this 21-year-old kid trying to explain HIV to negative women. I would be out on a date, and they would start talking about marriage and having a family, and my heart would just sink. My support group was all gay men, and while they were amazing, I couldn’t really talk about those issues, and I started to feel completely alone. Then around 1990, I found a support group for heterosexuals. But that group really taught me how to live with HIV. I remember saying to one guy, “You’re going to die, and you’re not even 30.” He said, “Bob, it’s quality, not quantity, of time.” He was right. I think I’ve lived a more full and incredible life than most people could ever hope for.

What has your experience been with all the changing treatments over the past 20 years?

After so many years of living with no hope, it was still bittersweet when AZT first came out. Prior to AZT, I had tried all kinds of alternative treatments. One day, I went to the gym and was told that my friend Tom, who had been taking AZT, had died of liver failure. That was the first time I realized how toxic these lifesaving medications can be. I’ve experienced side effects, from nausea to neuropathy to severe depression. For a while I couldn’t adhere, and as a result, I’m resistant to a lot of drugs. But that’s changed, and now I can count the number of doses I’ve missed in the past two years on one hand. Plus, the number of pills I have to take each day has gone down to  nine.

Where did the name “One Tough Pirate” come from?

I was hanging out with this cop who also rode motorcycles. I had a legal prescription for marijuana, but I was 240 pounds and heavily tattooed. I was afraid if I ever got pulled over, a cop would be like “Yeah, right, you have AIDS,” because of the way I look. I asked Clark, the cop, about it, and he said, “Yeah, unfortunately the world operates in the way you look over reality, and if I saw you while on patrol, I would think you looked like a pirate that ate small children.” But then he said that if I opened my mouth and was as kind and calm as usual, they would believe me. So I went home and told my wife I looked like a pirate. And I thought that whole “don’t judge a book by its cover” lesson was really important for my speeches to kids about HIV. So I made it my website. I have pages and pages of letters that people have written me on it. They are heartfelt and poignant. I don’t put them up to toot my own horn but to show people the beauty of being honest and sharing your life story.

Why did you and your ex-wife agree to be the subjects of The Fire Within documentary, released in 2003?

My wife was going to pedal in the California AIDS ride and I was going to crew. We were at a meeting for the ride, and this beautiful woman came up to us and asked if we wanted to be in her documentary. We went home and talked about it and decided to do it. She followed us throughout the ride and in our home life for about a year. It’s a very vulnerable position to have someone filming you when you are sick and to trust them to tell your story with heart and compassion. The film was in some film festivals, like Edinburgh and Leone. I saw it at the LA premiere, and I had goosebumps. After watching so many friends die, I had told myself, I’m not going to die without leaving my mark and making a difference. It was like I had been immortalized. I could have just floated out of the room.

Is it true that you get a tattoo for every year of survival? What’s next?

I have 26 tattoos, and some are just dumb or from a biker rally. But most of them mean something. I have a blue bird with RIP written on it for the 20th anniversary of AIDS. Next, I want to get a phoenix on my back, rising.

Now, at 45, he looks back at whom he’s become after living longer with the disease than without.

by Jill Nebeker 

First, some perspective. Imagine it is 1983. You are 19 years old, living in southern California. Your idea of the basics isn’t food, shelter and clothing but sex, drugs and rock ’n’ roll. You don’t have much in the way of family, but friends make up for that. You are unattached and hungry. You can go anywhere and do anything. In a word, you’re free.

Then, you get sick.

At first, no one knows why. You are told it is cancer or an autoimmune disease. It takes a couple of years and a newly developed test to determine your diagnosis: AIDS. What do you do? If you’re Bob Bowers, your illness becomes your crusade.

Fast forward to 2008. Bob Bowers is a mainstay in Wisconsin’s HIV/AIDS activist community. If you’ve been to an ACT Ride or an AIDS Network benefit, you cannot have missed him.

Bob’s head is shaved, and his glasses are thick-rimmed. What he lacks in height, he makes up for in muscle (think tree trunk or Marine arms). And then there are the tattoos. Like Bob, they are vibrant and bold: waves and skulls, webs and flames, a bluebird, a phoenix, a heart with a banner reading “Courage”–one tat for every year he has been positive.

Bob–aka One Tough Pirate–looks like gym freak meets ultimate fighter meets beatnik. That’s not too far off because Bob travels in all those circles–and more.

Bob has been living with AIDS for 25 years – a quarter century with a disease that owns his body and his life. Twenty-five years with a disease that has a stigma like no other. Twenty-five years with a disease that has no cure, only experimental drug after experimental drug. In those 25 years, Bob has made HIV/AIDS awareness his cause. And although not gay, he has also become an outspoken activist for gay causes.

After being diagnosed, Bob felt fear sink in. AIDS-related complex (or ARC, as it was often called then) causes severe fatigue, swollen glands, compromised immunity and a lot of unanswered questions. He was told he’d have maybe ten years to live. For Bob, this conjured up his mother’s short life. When he was ten, Bob’s mom died of breast cancer. She was only 35. Bob was certain that, like her, he would not live to see much more than 30. In his words, “I thought, ‘I’m dead at 32. I’m fucking dead.’”

By the late 80s, Bob was receiving treatment for HIV/AIDS. The disease made him sick, and the drugs made him sick. He also began participating in the culture of the disease. He went to walkathons and dance-athons. He kept on being Bob: loud, uncompromising and passionate about life, if a little lost. He just did it as someone with AIDS.

Then in 1999, a friend convinced him to watch the Tanqueray California AIDS Ride. He resisted. In fact, he says, “I went only out of guilt.” But it turned out to be something he never forgot. “Looking into the eyes of the riders when they came in … it was life changing.” The next year, his wife, Shawn, whom he had married in 1990, cycled the 575 miles from San Francisco to Los Angeles as part of the Seventh California AIDS Ride, now called AIDS/LifeCycle. By 2002, Bob was enmeshed in the rides. Although he doesn’t cycle – Bob happily admits he’d rather be on a Harley – he lives for the rides. He explains, “The Ride pushes everybody. It breaks down façades. There is nothing else that can mirror what it is like to live with HIV or how we should respond to it.”

In 2004, after a divorce and a stint living in Kenosha, Bob moved to Madison. It didn’t take long for him to get involved in ACT, the Wisconsin AIDS Ride. He volunteered to speak at Ride orientations; he crewed; he looked the riders in their eyes when they came in. Today, he is the check-in lady. Whether in shorts or a skirt, Bob is there to make sure all the riders come in – and to give them each a hug.

Before moving to Madison, Bob often spoke at high schools and fundraisers about HIV/AIDS awareness. Once in Madison, he founded HIVictorious, a nonprofit organization dedicated to creating HIV/AIDS awareness. But it’s more than that. It is a career, a calling, a catalyst. Through HIVictorious, Bob lectures, gives interviews, and volunteers his time to other organizations, such as Camp Heartland in Willow River, MN. He encourages, educates and challenges his audiences. He wants people, especially young people, to know that sexually transmitted diseases (STDs) are serious business. In the way only Bob can, he holds up his experience as a warning.

Given the choice, Bob chooses Madison over anywhere else, hands down. He is amazed by the access he has to the media and to politicians. He says, “There’s no way I could walk into the L.A. mayor’s office and have a talk with him about HIV/AIDS.”

And it’s not just talk. Bob conceived of a contest where students created posters answering the question, “What if it were you?” (meaning, “What if you were HIV positive?”). Madison Mayor Dave Cieslewicz and Congresswoman Tammy Baldwin got involved. Both have given written answers to the question, and both have hosted the contest winners at their offices. Bob is proud of these connections. He says, “We’ve affected them as well. They have stepped outside of their comfort zones.”

Bob says that starting HIVictorious and its various projects “wasn’t business, it was personal. It’s not work, but an extension of me.” He likes what he’s doing and will continue to come up with new campaigns, but he doesn’t want to expand. He’s content with his small volunteer staff and the small amount of monthly revenue from private donations. He explains, “I don’t want more overhead. I want it to be grassroots and heartfelt. I don’t want to lose myself. You start taking federal or state dollars, and your hands are tied.”

Even after how far he’s come, Bob continues to deal with fear. He takes about 15 pills each day, and on some days, such as the day of our interview, he still pukes. But he says, “Today I barf, and I take it in stride. I don’t give up and think I’m done for the day. Instead, I think ‘That’s how today turned out.’” He credits the good doctors he has, the gay community, and the people closest to him for helping him put fear aside.

To be sure, Bob is driven. In all he does, he pushes himself. Why? That’s just who Bob is. “If it wasn’t AIDS, it’d be something else. Who knows? I might have gone to school. Or been a CEO. Or a Hell’s Angel.” But because of a shared needle or unprotected sex – he’s not sure which ultimately caused him to contract HIV/AIDS – he is HIV positive. And so he fights the only way he knows how: continuously, inventively, and genuinely. 

Thinking ahead to turning 45 this May, he says, “Given the hand I’ve been dealt, I’ve played it pretty well.”

www.onetoughpirate.com

Poster contest combines art with awareness to deliver a message of hope

By Jeff Berry

Bob Bowers talks about HIV prevention and education the way that most people talk about their family or their pets, or even their favorite hobby—with a great deal of passion, mixed with just the right amount of sentiment.

​“I deplore the egos and infighting between organizations—it’s getting in the way of the war that we’re all fighting.” That’s one of the reasons he came up with the HIV awareness campaign, “What if it were you?” The campaign, sponsored by HIVictorious, a grassroots HIV/AIDS prevention and education organization in Madison, Wisconsin which he founded in 2005, includes a contest which challenges area high school students to answer the question, “What if it were you?” The students then incorporate the slogan and their response into posters they design themselves, in an effort to raise public—and student—awareness about HIV/AIDS. Bowers explains that it wasn’t about bringing resources to his organization, but rather about showing unity, collaboration, and fighting against HIV/AIDS.

​Bowers tested positive in 1985, and today looks the picture of perfect health. But he’s been at death’s door more than once, and estimates he has been living with HIV for more than 25 years. At age 45, he’s known by friends, on his website, and his MySpace page simply as “One Tough Pirate.”

He got the name and idea from his friend Clark Baker, now a retired Los Angeles policeman. At the time Bowers was living in Los Angeles, and he took medicinal marijuana to ease the nausea and vomiting caused by his HIV medications. He was worried that he would get pulled over and subsequently arrested because he rode a Harley with straight pipes, and portrayed a tough guy image—shaved head, tattoos and all (in truth, Bowers claims, he’s been in only two fights in his entire life).

​When a friend introduced him to Clark, Bowers’ spilled his whole story, but his first impression was, here was a guy who was his polar opposite—cop, straight-laced, clean cut. Clark told Bowers that when he first saw him on his Harley, he thought he looked like a “friggin’ pirate who ate small children.” But Clark taught Bowers a valuable lesson about people’s perceptions. The reality, said Clark, is to just be as honest and nice as you are, and the cops aren’t going to mess with you. If a cop brings in a card-carrying medicinal marijuana club member with AIDS, they’ll get in more trouble than you ever would, said Clark.

“That’s where the quote of ‘compassion is our cure’ came from,” explains Bowers. “I really thought that the campaign was a compassionate way to make people understand perception versus reality. It provided a very safe way to put it into our community.

“So many of the messages are ‘just say no,’ or ‘put on a condom,’ or ‘sex kills.’ Instead, I prefer to let the kids send that message.” And out of that came the “What if it were you?” campaign.

​“I had never done a social marketing campaign before,” laughs Bowers. “I didn’t even know what that was. But I just felt that by asking, ‘What if?’—that no one could really argue with that. I’m not asking you to agree or disagree with AIDS, or who it’s affecting, or why it’s affecting certain demographics, but—what if? What if you were in my shoes? How would you want people to react? I think it’s extremely profound and powerful.”

​Today he regularly goes on speaking engagements and delivers that same message, that “you can’t judge a book by its cover,” to anyone who will listen—local groups, businesses, schools, and even nursing homes. Bowers, who’s straight, believes it’s essential that kids, especially, understand that HIV does not discriminate, and can happen to anyone. And just as importantly, people shouldn’t be afraid to discuss it, and be able to do so in a manner that doesn’t incorporate fear or judgment. He does this by talking with them frankly about his own experience living with HIV, and finds he has an ability to connect with the kids on their own level.

​Bowers is quick to point out that he’s not artistic, in the sense of being able to create his own original artwork, and so he really had no clue where the contest would lead. “I just totally trusted and put my faith in these kids, and we’ve been blown away by some of the very powerful and heartfelt messages that they’ve created.”

In addition to the poster contest, students fill out a brief pre and post questionnaire which poses the question, “If you found out a classmate had HIV, how would you react?” as well as other questions about transmission and prevention.

Bowers is adamant about the need to address the social issues and the stigma surrounding HIV, in addition to emphasizing prevention and education. He says that racism and homophobia continue to play a large part in the rising infection rates in the community.

“The demographics of this epidemic show that half of those infected are African American, and half are men who have sex with men (MSM). I can’t help but think that if it were affecting white, upper-class folks that we’d be faced with a different outlook right now. We may not have the scientific cure, but money would be pouring in, left and right.”

This fall will mark the third year of the contest. Unfortunately the program did not receive renewed funding from the Johnson and Pabst LGBT Humanity Fund of the Greater Milwaukee Foundation, which had funded them in years past. Upon learning this, Joe Pabst, a member of the well-known Pabst family who has done a great amount of philanthropic work in the city and state, generously reached into his pockets and made his own personal contribution.

This helped offset some of the initial costs and started the ball rolling again for the next round of the contest, but in the absence of any other funding Bowers has had to seek additional donations from individuals and organizations in order to cover the remaining costs. While Bowers says he doesn’t mind, it makes it difficult to reach a broader audience, and requires much more time to promote on his own.

Bowers’ organization doesn’t accept any federal or state funding because of the strings attached—the limitations to what one actually can say or do when it comes to HIV prevention and education. HIVictorious has no administrative overhead, so all of the funding goes directly to cover the costs of things such as printing, ad placement (billboards and bus ads), and Product Red iPods, which are used as giveaways to some of the finalists. “It’s all peer-driven and grassroots—and I pride myself in keeping it that way,” says Bowers.

Bowers reached out and enlisted the help of key local politicians, including Madison Mayor Dave Cieslewicz (better known as Mayor Dave) and U.S. Representative Tammy Baldwin, who were both eager to help. Mayor Dave and Congresswoman Baldwin were instrumental in helping to get the contest off the ground. They also helped raise awareness prior to the campaign with not only their constituents but the media as well, and met with winners and their families afterwards.

The same school produced both the first and second place winners of the most recent contest, of which there were about 100 entries altogether from four area schools in Dane County. James Madison Memorial High School senior [CHECK] Collin Burke was awarded first prize, and Kevin Julka was runner-up.

The morning that the winners were announced, Bowers opened the paper to read an article that a reporter had penned about the contest. It was only then that he learned that Collin’s uncle, who had been an outspoken HIV/AIDS advocate in Madison, had in fact died of AIDS before Collin was born. Bowers just sat there, in tears. He says he is continually humbled by the project and the support that has come from the entire community, including even the local police department.

“It’s a testament to keeping it out there, and giving people the ability to share openly about their experiences,” says Bowers. “That’s why Collin’s family has been so involved and thrilled by this whole thing.”

For more information visit www.onetoughpirate.com

Click here to learn more about the contest and to view entries from past winners.