Kari Hartel, Advocate and Mom, Bridges the Gap Between HIV Long-Term Survivors and Newbies

Kari Hartel
Kari Hartel
Robert Riester

Name: Kari Hartel
Location: Littleton, Colo.
Birthday: April 21, 1981

"I know I am a baby in this epidemic," says Kari Hartel, who has been living with HIV since 2003, "and often feel as if I am bridging the gap between long-term survivors and newbies."

By day, Kari works with youth and pregnant women at a Ryan White Part D-funded clinic. In her free time, Kari is involved with her community in numerous ways, including as a co-chair for the Positive Women's Network - USA's Colorado chapter and as a founding member of the CO Mod Squad, a team of advocates led by women living with HIV that successfully lobbied, drafted and achieved the passage of a bill making Colorado the second U.S. state (after Iowa, in 2014) to reform its HIV criminalization laws. She is also a full-time single mom to an insightful and precocious HIV-negative nine-year-old, Liana, whom she describes as "one of the best allies."

In honor of the HIV epidemic's official 35th anniversary, Kari and I chatted about intersectionality, the wisdom of young people and why we need to stop talking about "ending AIDS."

Where were you when HIV first entered your consciousness?

I think it was about 1989. I remember watching the Ryan White movie on TV -- the woman who was in Who's the Boss, I think, was in it.

I also remember getting this book around then -- and I quite frankly don't remember how I got it: AIDS: Trading Fear for Facts -- A Guide for Young People, which I still have. It has a Keith Haring drawing on the front; I didn't know who that was until much later in life when I became an activist.

Keith Haring book cover
Consumer Union of the U.S.

I have reread it since then and realized that it has some of the most horrific language in it! It talks about "those people," and "infected" is in there a lot, and there's a lot of stigmatizing language about injection drug users. It has a lot of those early ads that were all super fear based: "Suddenly, sex is dangerous!" and "She has her father's eyes and her mother's AIDS."

What I took away from the book was that you should get routinely tested for HIV -- so that was always part of my sexual health regimen. I got tested between all my partners; and I was always a serial monogamist, so it was easy to do that.

What wasn't in the book was that you should have your partner get tested too -- it only works so well if only you get tested.

Complete the sentence: At the age of 35, I am _______; and I wish I were __________.

At the age of 35, I am glad to be part of a lot of really amazing activist movements, and I wish I were independently wealthy so I could dedicate more time to that!

I wish we were further ahead. The new buzzword "end AIDS" makes me cringe, not because I don't want us to do it -- I think that would be great -- but because we're not addressing all the pieces that it actually entails.

We are not addressing all the intersections: institutionalized racism, sexism, classism, heterosexism, all of those things that impact someone getting HIV, that the bulk of society avoids talking about and doesn't want to address. It takes a lot of conversations and self-evaluation for some people to even realize that it's there; and for others, it's painfully present every day. We live in a culture where we want things as quickly and painlessly as possible, and God forbid we have to do some sort of self-evaluation.

I hate that we keep using that language, "ending AIDS" -- because I feel like people think, "Yeah, I'm totally going to get behind this so we can end AIDS." Then, when we don't, people fade away and stop wanting to work on this. It's an unrealistic campaign goal. It sets us up for failure in the future.

As somebody who works in this field, a lot of our campaigns and our organizations are geared around "AIDS" -- AIDS Watch, the Campaign to End AIDS -- and that term doesn't resonate with me. I have never progressed to an AIDS diagnosis. I get how the term resonates with a lot of emotion and history for people, but I don't have any tie to that term whatsoever.

I see that with a lot of young people. It creates this age gap, and it's not even just an experience gap -- even younger people I work with who have been living with HIV their whole lives oftentimes don't identify as people living with AIDS. It turns into this debate that I wish we could have in a way where it wasn't so emotionally charged, so we could have honest, vulnerable conversations about how to bridge that gap.

Where do you think you will be in another 35 years? Where do you think the epidemic will be?

I don't know whether this will be my passion. Hopefully I will still be involved in a campaign -- I don't know whether it will be HIV or HIV and 10 other things. But I will be 70, so I hope I will be retired and doing things just for fun on the side. I hope that I will maybe be a grandma at that point. Who knows what else will be part of the mix? Hopefully I will be of sound mind and body -- or if I am a crazy old lady, hopefully I am a cool crazy old lady.

In terms of HIV: When I do outreach, people ask me all the time what is the one thing I would change. I think they always assume I'll say that I wouldn't be living with HIV, and that is never the thing that I would change.

This is part of being diagnosed at a time with multiple treatment options. The medical piece, for me, is manageable -- and I get why [manageable treatment] is the new message, but it pisses me off because all the things that come along with that socially are not always manageable and are not always impactable by individuals.

I hear that often from the young people I work with: The medical pieces are fine once you get plugged into care, but the social pieces are a bitch -- stigma, shame, people talking about you and not understanding. If nothing else, I hope those are the things in 35 years that have changed.

I hope people like my daughter and the young people I work with can educate people and open hearts and minds. That's part of why I love working with young people -- they are very matter-of-fact: "This is just dumb. We just need to fix that, and we'll just do that!"

I'll be 70 and sitting in my rocking chair, and hopefully they'll have changed it.

What does your nine-year-old daughter have to say about that?

One message that has been a part of her growing up is that she says: "When people are afraid, they make bad decisions. Fear never creates good decisions." She carries that through to everything, and ties it into all of these things we work on, whether it is LGBT rights, or HIV, or any social justice issue. As we're looking at war-torn countries and talking about people immigrating here, and people are saying horrible things about that, she always brings it up.

What that means for her is: "Hey, we just have to educate people. When they don't understand, they make dumb choices. If they were educated, that would change." I love that.

My favorite quote from her: When I officially told her that I was living with HIV (not that I had ever not told her), we were having a conversation about other people that we knew who it was safe to disclose had HIV. Liana said, "Mom! Do you know that most of my favorite people have HIV!" and I was just like "Me too!"

This transcript has been edited for clarity.