Jennifer Jako: “It’s Not about Subtlety or Silence”

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Jen Emp[oweredBy Kat Endgame, PQ Monthly
For National HIV/AIDS Women and Girls Awareness Day, I sat down with Jennifer Jako, a longtime HIV/AIDS activist who lives in the Portland area. I wanted to talk to her about her incredible story and get historical perspective on the HIV/AIDS crisis from a 90’s chick who has been living and thriving with HIV. As a young adult, Jennifer co-created a documentary about the lives of HIV-positive youth called “Blood Linesâ€â€”she also toured the country doing HIV/AIDS education, and managed to find time to start her own design company, get married, raise a child, and care for her backyard chickens. You can join her for a showing of the Empowered campaign video (a conversation between a group of five HIV-positive women from across the U.S.—along with Alicia Keys) at the Women and Girls Health Fair at PCC Cascade March 22. PQ Monthly: I want to give the readers a sense of where you come from before getting into the history of your life as an activist. Can you sum up of your life before you found out that you were HIV-positive? Jennifer Jako:  I feel like I was born into activism. It seems that ever since I was a little girl I was saving things. It started really early protecting my sisters from our very abusive father. Somehow innately there is this eternal optimist in me that continually flew forward despite the really terrible situation I was in as a kid. When I was twelve years old, I came home to find that the management group of the apartment we were living in had decided to take power hoses to these beautiful cliff swallows nests under the eaves of the complex, so there were fledglings and hatchlings littering the muddy ground and shrieking swallows wondering where their babies were. I and a gaggle of kids gathered together as many fledglings as we could. I called the Audubon Society and before I know it I’m on the cover of the Denver Post as the bird-saver girl. PQ: So it started early? JJ: It did. In high school I became very involved in protesting the first Gulf War. The idea that we could have a draft in my time was horrifying to me. I wanted it to stop. I walked in our local AIDS walk, I didn’t think of it as a disease that touched young people that I knew, but it was important to me. I got involved in ACT UP fighting as part of the No on 9 campaign. I started learning what worked and what got attention. It definitely helped as I leapt into the discovery of my own disease. PQ: You’ve used your story about how you became infected as a cautionary tale in your speaking—could you give the nutshell version? JJ: I was a pretty sheltered kid so I was in the process of discovering everything—from what sorts of food I liked to what my boundaries are. I ended up partying with a friend in a situation where he and I never meant to have sex. We were completely wasted and he wanted to have sex and I didn’t. I remember clearly saying no, and I also remember being so out of it that I didn’t really care what he did. The next day, I remember that kind of broken, gut-wrenching feeling of “Oh my God, I just had sex with my friend!†and “How do we talk to each other about this?†We couldn’t figure it out so there was complete silence until almost ten months later when I accidently found out my positive test result. PQ: That’s a lot to deal with. How did you find out you were HIV-positive? JJ: I was 18, about to start college and I knew I was going to meet a lot of people so I thought “I’m going to get checked out.†I’d only had a pap smear once before. I went and talked to a nurse and she encouraged me to have an HIV test because I’d had six partners. I didn’t like needles at all, but I thought “I'm gonna have this test taken and then I can motivate someone else to do the same.†I skipped out of that office never thinking I had anything. I got the shock of my life two weeks later. I’ve never had another sexually transmitted infection. I just got HIV. I got something permanent—and at the time deadly. My prognosis at the time of diagnosis was that I’d be lucky to live healthy until I was 25. At the time the life expectancy for women was about 7 years. I feel like the power to my story is the fact that I didn’t have very many partners. There have been many people in my life who had 50+ partners and didn’t contract HIV, I had unprotected sex twice. Two times! That’s really slim odds. PQ: Those are very slim odds. JJ: It only takes one time to infect. We have to establish what is safe for us; everyone has a degree of risk that they are willing to engage in, but I think unfortunately with HIV a lot of people, myself included, option themselves out of the risk. I’m sure it was communicated to me that HIV is a disease that is sexually transmitted amongst humans, but what I understood as a teenager was that it’s communicated amongst gay men and IV drug users, neither of which I am. Because of who I am I’ve been able to be a secret weapon—especially in the early days when AIDS was not a friendly subject. In conservative rural schools homosexuality couldn’t be mentioned and the word condom couldn’t be said, but they were allowing us to talk about HIV so that was a win. PQ: So you were working with Cascade AIDS Project locally. How did you get involved in national work? JJ: Another HIV-positive young woman, Rebecca Guberman, and I went to a national youth conference organized by the now-defunct National Association of Positive Youth. There were 70 of us there and we were all speaking the same story, and I was inspired to capture it as a film. That was the birth of “Blood Lines,†the documentary film that she and I collaborated on. It’s a kaleidoscopic view of what it’s like to live with HIV as a young person. It’s a cautionary but hopeful tale. We started it in ‘95 but didn’t finish it until ‘98. In ‘98 it started broadcasting on MTV and continued over 4 years.  I’ve heard from some people who saw it on MTV as late as 2004. PQ: How did the film getting picked up for heavy rotation impact your life and activism? JJ: It seemed like there needed to be more of me. Once the film was a viewable piece, I was rarely home. I toured college campuses across the United States. I had a sponsorship from the Kaiser Family Foundation, and student groups would fundraise for plane tickets and maybe an honorarium. I would usually speak at a college and then I would try and speak at local high schools or at other programs that never have the funding to bring a speaker in. I did two to four speeches at each place I was brought in. I’m glad this all happened when I was young, and I had a lot of energy. I barely kept it all together. When there wasn’t enough money I’d work a temp job for a few days. It was very hard, but there was also this knowledge that I was getting the message out to literally millions of people. As a teenager my message was getting to hundreds of people. With the film all of a sudden it was millions—they believe the viewership of “Blood Lines†was 12 million a year while it was being broadcast. That’s huge! To have that much of a voice as an activist is incredible. We had an 800 number at the outset of the showing of the film on TV and I know for a fact over 180,000 kids called the number to get information about safer sex. PQ: Damn! JJ: In Italian there’s this expression “...and now I can die...†I’ve always thought that about the film, if I never did another thing than reach those viewers, now I could die. As a young person I made that film in a place of anticipating my own death. That passionate self-effacing work happened because I knew I wasn’t going to be around very long, and I needed to help prevent HIV/AIDS from entering others’ lives. PQ: The last 30 years of HIV/AIDS activism has produced some radical changes in how our culture talks about HIV and AIDS. How is it completely different than when you first got involved with the struggle? JJ: I see greatly reduced stigma around HIV and AIDS. In the early 90’s I had a job in a deli and I was let go because they wouldn’t want their clients to find out their sandwich was being prepared by someone with HIV. That’s very different from today where people are a little more informed and there is more acceptance. Mind you people are still getting fired from their jobs, but I do think that the misperceptions and the overall stigmatization of the disease have been reduced. It’s fantastic that we’ve made those kinds of inroads. Another big difference is the digital age. It's a much faster and more effective way of disseminating information. My initial activism was very much in the trenches, person to person work. Today there's the beauty of Twitter which is accessible to people of all socioeconomic backgrounds. Today great actions can be taken by the disenfranchised because of that access to technology. PQ: What advice would you give to the next generation of HIV/AIDS activists? JJ: Pimp this thing! Put neon lights underneath it! Give it hydraulics! It needs flashing lights. It needs to be in bold. It’s not about subtlety or silence. Silence and subtlety did absolutely nothing for us in all this time. Amongst a young population we have to keep talking about this, we cannot have this complacency that it’s treatable. We cannot have this complacency that people are living longer. The fact is that not everyone succeeds. The fact is that I am not going to die of old age, I am going to succumb to one of the side effects from these toxic drugs I pump into myself every day. That’s not pretty. We’ve lost the traction of the prognosis of the early days that struck such an incredible fear in people, of contracting this disease. People still need to remember that it only takes one risky decision to infect, that you are still vulnerable and this isn’t just disease light. There is a lot involved in maintaining one's health with HIV and it’s lifelong. There’s no going back. We need to be more present. We’re living in an age that is keeping us from being present, from taking care of the health of our bodies. The more distracted we are the easier it is for this disease to get in. We need young people to understand that we are still at the same place that we were before we had treatment. We need to stop the transmissions, that’s the only way we’re gonna win.