Before Dr. Kimberley Hagen co-founded the Center for AIDS Research at Emory University in Atlanta -- back when there barely was any HIV research, or HIV education, or anything but fear and ignorance surrounding HIV and those affected by it -- she was a frontline community educator during the darkest days of the epidemic. Now she's an assistant professor of behavioral science and health education at the Rollins School of Public Health -- and she teaches a massive open online course called "AIDS" with more than 10,000 students enrolled. How did her long career begin? She was looking for a poster for her kitchen.
In this amusing, illuminating conversation, Hagen recounts teaching against the terror of the times; facing stigma with humor in the most unusual places; and how she witnessed the ways HIV/AIDS changed the entire profession of infectious disease medicine.
In teaching HIV/AIDS, have you ever experienced any instances of political incorrect, racist, sexist, heterosexist and/or homophobic language? If so, how did you address it?
Oh, yes. To remind you, I started doing this at the beginning of the epidemic. When I first started working as a medical educator, every single room I walked into was full of frightened people. In some people, the fright would turn to anger. It's just how some people deal with their fright, is to get angry.
For example, I was conducting a continuing education program for a group of physicians in a small Georgia town that will remain forever unnamed. It was a dinner meeting, and I was to talk to them about the need to take sex histories from their patients on a routine basis to try and determine if they were at risk for HIV. One of the physicians stopped me in the middle of a sentence and said to me, "Let me get this straight: You want me to talk to my women who are in my OB/GYN practice, the married ladies who come see me, and you want me to ask them about their husbands' sex lives?" And I said, "Yes sir, I do." And he threw his dinner at me. Threw it right at me! Yep, hit a nerve! [laughs] That was a one-off situation because I didn't have a chance to come in and do any preliminary work around HIV. This particular group had been told by their local whatever that they had to start being more aware of HIV patient care. They had to do sex histories, referrals for testing, use infection control. This is how old I am: When I started, nobody was doing infection control, and it was a new idea.
One of my favorite things to do when I would have a training is to start with what I call the "Dirty Words" game. I'd put pieces of paper all around the room and I would put the anatomically correct words for various body parts and sex acts on them and I'd give people markers and say, "Run around the room and put down every euphemism you possibly can." And that would be a good way for people to go from being nervous, scared or not wanting to be there to laughing about it and relaxing and starting to normalize the conversation. It was extremely effective, but sometimes people would bring up racist or sexist or insert-every-"-phobic"-here terms. But, that would be an opportunity where we could talk it through.
Once, when doing that, I was right in the middle when suddenly a camera crew walked in, and the mayor of the little town I was visiting came in. They set up a podium, and she started talking into the camera about what an excellent opportunity this is, that they had brought people from Emory University down to their hospital to talk about HIV/AIDS education because the hospital is committed to providing the most highly compassionate care that they can. The cameras are pointing right at her. Right behind her is the big white piece of paper with the word "PENIS" written on it, and every euphemism in the planet written down below it. [laughs] Right behind her! And, as she's talking, the top two pieces of tape start to come loose and the piece of paper starts to peel away from the wall. And people start laughing, and that begins to get her attention, so she turns around to see what's going on, and without missing a beat, she goes, "Don't you just hate it when that happens?" [laughs]
Yes, I had a lot of that. I would walk into classrooms and I would give out index cards and I'd say, "I don't want you to write your name on it. I want you to write down any questions you've got around HIV." Because then, I could answer those questions without asking people to "out" themselves by raising their hands. And a lot of times, the questions wouldn't be questions; they'd be sort of rants. "This is God's judgment on" insert whoever you don't like here. People who are promiscuous! People who are gay! People who are drug users! People who are sex workers! And, they'd say, "I think they should just pack them all up and ship them off to an island!" And I'd say, "Really? What island? Rhode Island?" [laughs] It would have to be a pretty big island!
"The fear was there, but everything was a teaching moment; all of it was a teaching moment."
The fear was there, but everything was a teaching moment; all of it was a teaching moment.
I was with my coworkers at a restaurant and the owner of the restaurant came up to our table and asked us to leave. And we were like, "What? We're not having a food fight." And he said, "Look around, you've managed to chase off all of my other customers!" And we were just talking shop around HIV. And everybody at all the other tables had gotten up and left, just in case they could catch it from our conversation.
We turned that into a teachable moment. We asked the guy if we could have members of our supportive services group bring over educational materials, flyers. What could we do to help? Yeah, we're going to keep coming here. You're right next to where we work! He turned out to be an advocate and friend.
There were things like that all the time. I used to have a problem at parties; the hostesses would hate me. If I was eating my food from the refreshments table, and someone would ask what I did for a living, after I told them, nobody would touch the food at the refreshments table. A lot of times, we dealt with it by trying to diffuse it and deal with it with humor.
The course description for your online class is wonderful; it talks a lot about the divide between people who grew up before the dawn of the AIDS epidemic and those that have grown up since. It got me thinking about how you were teaching in the '80s as a medical educator and now you're teaching university courses in 2013. How have students' reactions to HIV/AIDS changed from when you were teaching in 1986 to now?
When I started as a medical educator here at Emory University, we all thought that we were going to be getting requests to give lectures about infection control and about how you provide patient care, what the new drugs were, etc. But the requests we got from the infectious disease doctors and the internal medicine doctors were all about how they should deal with their grief. How they dealt with how hard it was to provide this care. And it occurred to me that we were at a pivotal moment in medicine, here.
"One of the reasons people who became infectious disease doctors went into medicine was that they really loved to ride in on the white horse, apply their brain cells, figure out what the problem was, judiciously pour antibiotics all over it, and then ride happily off into the sunset with the patients they'd cured."
Doctors self-select. The personality of the person who becomes a pediatrician and the personality of the person who becomes a neurosurgeon: not the same people. They self-select into the area that they want to go into. One of the reasons people who became infectious disease doctors went into medicine was that they really loved to ride in on the white horse, apply their brain cells, figure out what the problem was, judiciously pour antibiotics all over it, and then ride happily off into the sunset with the patients they'd cured. It was the golden era of antibiotics. If you were smart, you liked puzzles, and you had a little bit of a hero complex in you, that was the field you went into -- infectious disease and internal medicine -- because you could cure all your patients.
And then HIV came along. And it didn't matter what you did, no matter what, because in those early days we did not have the drugs we have now, the tests we have now. All we had were people who showed up late-stage, highly symptomatic, and we could do nothing for them. No matter what you did, your patients died. And so, they would turn to me, and other educators like myself, to help them figure out how they were going to deal with this. I gave so many classes about how you process grief.
Now, jump forward to 2012, 2013, and I go and talk to infectious disease and internal medicine doctors -- those are guys who grew up knowing that this is what the deal was. They went to medical school after HIV/AIDS became a routine part of the medical horizon. They're different people than the students that I had in the early years. Their questions are different, their issues are different.
It's the same with the undergraduates. When I first started doing community education, the most common question that I got was, "Can you get this from a mosquito bite?" No one asks that question anymore. Enough years have passed that, if you could get it from a mosquito bite, somebody would've. [laughs] But, the students that I see now, all of them -- except perhaps for non-traditional students -- there aren't any students in the undergraduate schools who were born before HIV. For them, this is just part of the background. They're interested in it almost as a historical artifact, or finding out about this because they have friends who might be infected, or that they're possibly at risk. The divide is very apparent to me, in that the information that people ask me about has changed, and the degree to which people just think this is normal.
How did you first get involved in HIV education?
I'm going to tell you a story about that: Back in the mid-'80s, I had just moved into a new apartment in Atlanta, and I was in the process of decorating my apartment. I was walking through town one day, and I saw the most perfect poster. It was gorgeous. It was a big heart. And I thought, "Oh, that's exactly what I need for my kitchen!"
I walked into the store and I said, "Can I buy a copy of that poster?" The man said, "No, I'm sorry, that's just an advertisement for a fundraiser. But, I'm sure if you attend the fundraiser, they'd be happy to sell you a copy of the poster." I decided, sure, why not. On the day of the fundraiser, I had nothing else going on.
I went up to the Fox Theatre, having never been to the Fox Theatre, not realizing that it was one of the most gloriously beautiful theatres in the country, and that people who go to events there are in long dresses, tuxedos, etc. [laughs] I slid into the lobby in the shorts and T-shirt I was wearing as I biked over there, and tried to be as inconspicuous as possible.
I sat in the last row of the top balcony, but it was so far away from the stage that you could not actually see the stage from there. So I moved down and sat on the steps, which put me right next to a person sitting on the edge of that row, and that's when I found out what the fundraiser was all about. I was attending this without even knowing what it was; I just wanted a poster for my house! This fundraiser was for an organization called AID Atlanta, which existed to provide help, social support, help people locate care providers, anything, for people living with HIV.
I was mesmerized by this. I was also becoming very aware of the fellow sitting next to me who was very clearly moved by everything we were hearing and seeing. He began to kinda fall apart and cry, and what could I do? I started patting his knee then put my arm around his shoulder, telling him, "Oh, it's going to be OK." Finally he calmed down, and I said, "What's going on?" And he said, "I really shouldn't have come this evening. It's too much. I buried my 13th friend from AIDS today." And that rocked me back on my heels.
He said, "How many people have you lost to AIDS so far?" And I said, "Hmm. None. Yet." He looked a little puzzled and said, "Are you gay?" I said "No." And at that, he physically withdrew from me and looked at me extremely suspiciously and said, "Then what are you doing here?"
"I realized this is not just a terrible disease, this is a terrible disease that was isolating the people who were affected and infected."
In that moment, I realized this is not just a terrible disease, this is a terrible disease that was isolating the people who were affected and infected by it so much that a person who was attending a fundraiser could not even imagine why someone who was not personally affected by this would even want to come. It just hit me, like a bolt out of the blue. It's the mid-'80s, the epidemic is not widely known outside of the circles of those who are in fact affected by it.
I'm trying to stumble my way through the conversation, and I say, "Well, you hear what they're saying down there. This isn't just a gay disease. This affects everybody. I'm part of the everybody!" He saw right through me. He said, "Those are great words, but what are you actually doing?" And I'm thinking to myself, "Buying a poster for my house?"
It was a challenge. It was not even a thinly-veiled challenge. I left that fundraiser that evening and couldn't stop thinking about it. And that weekend, I walked down to AID Atlanta and volunteered. They were as surprised to see me as this young fella was! I may have, in fact, been the first straight woman who didn't have a brother with AIDS to walk in the door to volunteer. Once I was really aware, I just couldn't let it drop.
I had a perfectly excellent job working in management development, taking people out into the woods and doing team-building exercises, and I taught high-ropes courses and rock climbing and rappelling and I loved my job. But, somehow, this seemed more important, so I quit my job! I became an 80-hour-a-week volunteer over at AID Atlanta. I read my way through the entire treatment library, I volunteered for the Helpline, and I did everything I could to self-educate around HIV/AIDS.
In the process of that, I became a buddy. That was a big deal, because it was only after I started working there that it dawned on me that the person who had worked with me at a previous job at a bank, the next bank teller over, was probably gay. Now that I had developed my gaydar, I had realized, "Oh my goodness, I have lots of friends and family members who are gay, I just didn't know it!" And I started to obsess about these people who were a part of my life or had been a part of my life, and, for some reason I really focused on the fellow who had been the bank teller next to me. I thought, "OK, I'm going to make a deal with the universe. I'm going to become a buddy to a person living with AIDS so that out there somewhere, somebody like me will be a buddy for him!" We had completely lost touch, it had been years since we had been in the same place, and I didn't even know if he was still in Atlanta.
I went for my interview to see if I had what it took to be a buddy. I walk in the room, and there's my friend. He's the one who's going to give me the interview. I just stopped and stared at him. His first question was, "Why do you want to be a buddy?" I'm like, "Should I tell him the truth? Should I say, 'So that somebody will take care of you if you have HIV'?"
"I'm making a deal with the universe!" I said! Fortunately, he thought that was funny and kind and touching and I passed the interview.
My very first task when I was assigned my very first buddy was to go over and introduce myself. It turned out that it was a bad day for him. He was on the sofa, he didn't have the strength to get up; but he was raised right, he was raised in the South, just like me. So he said, "Why don't you go in the kitchen and fix us both some Cokes?" I got the cans of Coke out, thinking I'm so glad that the first task I was given with my buddy was within my skill set. I went to the cabinet to reach up for a glass and my hand got about an inch and a half form the glass and it froze. Just froze. I mean, I had been through all the training sessions by this time. I knew you could not get HIV from touching a glass or from drinking out of a glass, but it's like my hand didn't know that. My brain did, but the rest of my body didn't know it.
To this day, I sometimes think, following through with that action, forcing my hand to go that extra inch and a half, pour a Coke into a glass, take it into the next room and share a Coke with this man who was living with AIDS was probably the bravest thing I ever did, because despite what I knew, I was experiencing fear. And I said, "I will not let this fear stop me. I will do this even though I am afraid."
"But I've never forgotten what that \[fear\] felt like, and it moved me in the direction that I have taken for the rest of my career path."
I think that, as I was driving home after that was when I realized I wanted to be an AIDS educator, because I thought there must be people out there like me who are care providers and they're still doing it even though they're scared. I want to be one of those people who help them work through the fear. It wasn't long before I was grabbing the pizza and Coke out of his hands; I got past my fear almost right away. But I've never forgotten what that felt like, and it moved me in the direction that I have taken for the rest of my career path. It was a desire to help people understand that the difference between the risk that they felt like they were facing (huge) and the risk that they were taking (tiny) could be bridged.
That was when I moved full-speed into really trying to self-educate. There were no formal programs you could take.
So, there's the really really really long story. How did I get into this? I wanted a poster for my kitchen! [laughs] I tell the story sometimes to my graduate students, and I say to them "Sometimes you do the right thing for the wrong reasons, and that's OK. As long as you do the right thing."