The Ukraine has the most new cases of AIDS infection in Europe and is amongst the nations in the world where the disease is spreading most quickly.
Andrea Diefenbach's series of intimate and personal portraits deliver a remarkable and poignant photographic study of the epidemic there.
Photographer, and regular FADER contributor Krisanne Johnson, whose own long-term work centers on AIDS, both in America (see her work about young African-American women with the disease in The Conundrum from FADER 57) and in Swaziland, spoke with Diefenbach about the project, which has been published as a book, AIDS in Odessa with a corresponding show at ClampArt, New York up now through June 6th.
You grew up in Germany.
Yeah.
And was it formerly West Germany?
It was West Germany, I grew up in a village not far from Frankfurt.
Okay, I googled your town, and it said it was famous for spas and gambling.
It’s true! Dostojewsky was playing there and I actually go to an old roman spa often.
Nice. Moving on to another city in Germany, the first time I saw your work was at the Lumix photo festival in Hannover, Germany. And I still remember the photograph of, now I know her name, Natasha. She’s in this park and she’s on the swing-set and she’s just crying and it’s such an immediate photograph. I still think of it in relation to projects that are on HIV that had an impact on me, it just struck me, and I’ve always wanted to know more, what’s the story behind Natasha? Do you still talk to her? Was it difficult to take this picture?
It’s interesting that you’re saying this because I think it was really the most difficult picture I took during the whole project. At this point I was somehow already close to her. We went together to the orphanage to visit her children and she was speaking about this visit at least since three weeks [before], she was really looking forward to it and really wanted me to come with her to see her children. But then we were only allowed to see them in the office for maybe ten minutes and then they were quickly taking them away. It was obvious to me and I think also for Natasha that she wouldn’t get her children back. And when she’s sitting on this bench in front of the orphanage and she started to cry and she had some cigarettes and she—
It seems like she’s sitting on something like a playground, sort of.
I think it’s only a bench.
It’s just that she feels almost childlike at that moment. You know, the tears...and she looks so young, like she just needs to be held and then her friend’s holding her.
Yes, it’s like a playground. But I think it’s a bench. A Russian bench.
Did you feel like you had her trust at that point?
I knew she wasn’t against it and she wanted me to do it somehow, but still it just feels horrible when someone is so open and, how do you say this…
Vulnerable?
Yes. and taking a picture of this...I knew in the same moment that I really have to take this picture because it’s so important. But it wasn’t easy to take it.
What was your approach in gaining access to subjects? It’s such a large project, you know, AIDS in the Ukraine. How did you choose Odessa?
Actually I heard about the AIDS epidemic in Ukraine and I was really surprised that there was an epidemic inside of Europe and so I was immediately interested and I really thought I should do something there. The epidemic is in the south, and now also in the east of the country. But I wanted to show that it doesn’t sound so far away, to show it’s inside Europe, it’s right behind the EU border. So if I would’ve chosen a city like Donetsk (Doneck) in the east of Ukraine it would have sounded like Africa to most people in Germany. That is why I chose Odessa, because even if people don’t know where it is—they, most of the time, have heard at least the name. And besides Odessa’s harbor was probably the place where the virus came into the former Soviet Union in the '80s, and so it made somehow sense to work in Odessa. I had the feeling I might be able to tell more if I choose only one city and only a couple of people and really tried to come close to them instead of trying to capture the whole epidemic and hospitals and work of NGOs. Before I arrived in Odessa, I was only in touch with two small NGOs, who tried to help me to find people when I got there, but I wanted to find people who were not in contact with NGOs, because most are not, and so it was just searching and finding for two months—someone introduced me to someone else in the hospital and one’s neighbor was HIV positive… it was just asking and asking for two months.
I always feel like the first phone call leads to like the 20th person that you finally photograph...all the yes’s that turn into no’s, did you ever just get extremely frustrated during this?
All the time. I think no day was like I planned it before. And I was really often frustrated and was sure that I [would not be] able to tell what I see. I just had the feeling [that] I didn’t come close enough and nothing is working and thousands of times someone didn’t show up or didn’t pick up his phone or didn’t open the door and I was sitting there with my stupid German expectations with my interpreter at McDonald’s close to the train station, having coffee and thinking about a plan b for the day.
These photographs are so intimate. I feel as if we’re somehow on this journey...seeing subjects stare out into the world, by buses or through bedroom windows. And then you incorporated these detailed, overall shots in your book, from a tree that’s in full bloom outside a building to balloons flying in the air, and then one of my favorites is just a wall with these two butterflies. It almost gives this sense of hope or pause...Were these therapeutic pictures for you to take?
Maybe. I never thought about it like this, but I somehow took them—and some like the ones with the balloons, there is a meaning because people had written the names of people dying from AIDS on the balloons. Or the butterflies: it’s in the house of Tanya and Yura and I took the picture a couple of days after Tanya’s death—they were to me a such symbiotic couple and it was so sad that she wasn’t there anymore. It was actually the day of her funeral and I came back home with Yura and talked to him and then it was just—somehow I had to take this picture of the butterflies. Later when I was editing and doing the layout for the book I also had the feeling [that] I needed these pictures to give readers breaks, because was getting kind of intense otherwise.
The darkness of the subject, yeah. For me it was definitely effective. There’s something that’s very spiritual about balloons lifting into air, maybe spiritual is not the right word. It’s a bit hopeful...the tree in bloom, you think of spring, you think of new life you think of butterflies, you know, there’s a lot of symbols to those photographs you included.
Actually while I was there I wasn’t reflecting so much, it was more the feeling I had about the pictures, the one with the balloons seen as a symbol, not as a picture from AIDS Memorial Day, I sometimes found even [that] a bit too simple.
And now the balloons are on your cover.
Yeah, And with the butterflies it was similar, they are almost at the end of the book and I thought closing with these butterflies could be cheesy, but somehow it’s about having a bit of hope and I really like them a lot.
How is HIV awareness in the Ukraine?
The whole epidemic started in the '90s and that was a time when most of the people were just starting with injecting drugs. Nobody knew about AIDS, that’s how it spread so fast. They even sometimes put blood inside the opium mixture and then 10 people are taking their dose from this mixture or were just sharing needles, nobody knew about it, and that’s how the virus could spread so fast. There is still not much education about it and even the people in Ukraine and in Odessa who are not involved in this “scene” or who are not HIV positive don’t know much about it and they don’t know that there’s an epidemic in the Ukraine. But slowly now I had the feeling that there is some education about it but [that] it was not easy to spread the information.
I’ve definitely received an education on the disease through my projects and have so many moments where I just feel each subject needs a health advocate. Someone to speak up for them at the clinic because the courage isn’t there due to stigma. Do you ever have this feeling like you’ve become sort of a health advocate in these situations?
All the time. First I had to tell how it is in Germany, but after a couple of weeks, I knew what to do in Ukraine and what possibilities they have there, so me and my interpreter were suggesting things, giving information or convincing them to go to the hospital to do a second HIV test. But it’s also really difficult there, it’s not only that it’s really difficult to get ARV treatment, because it’s not available for many people—sometimes I had the feeling it’s also a lot about the way of thinking from Soviet times, people never learned to care for themselves, to bring up their own energy because the system was somehow caring for you, you had a job and you had this health care system. Now it’s different, but people are not used to it.
You have to seek out the—
Yeah. And on the other hand, there is a stigma from the side of the hospitals and the doctors and the nurses. I think 'til now it’s only treatment available for 5,000 people in the whole Ukraine. When I did the project in 2006 it was only 3,000 that were on treatment. That is just nothing. It’s not only about going to the doctor or going to the NGO. It’s really complicated and the whole thing just makes me so hopeless. When I went there, I thought, It just needs a bit more awareness, and then money comes, and everything will be solved. But it just—it’s so corrupt till the lowest level. Even in the NGOs there’s corruption. There are so many things—like, there was no Methadone at that time, because somehow the customs, and that means also the government, or some other people are earning from the drug trafficking. That’s why some people were not interested in substitute programs. So, it’s so many little weird things. I was kind of hopeless when I left.
No, I agree. I often feel the same way.
How many times have you been in Swaziland?
I just did my third trip. One day I watched a girl try to do a TB test at four clinics, and she couldn’t cough anything up and they wouldn’t do a blood test. She had to take a day off work, and use all of her money just to take this bus around, and then still she can’t receive any help. The drugs are free and getting better. I’ve definitely seen some improvement. But at the same time sexual practices don’t seem to change fast enough. And the prevention and awareness is there, so it’s just, as you said, really complicated.
When you were saying that you went with this girl who was trying to get this TB test. I think it’s interesting when you are with this person, and close to the person, and you really start to understand, somehow, the feeling they have going to the clinic and going to the doctor. You understand that is difficult.
You feel their frustration!
Yeah, you are frustrated yourself! When you see the last story in the book, about Tanya and Yura, she was getting in worse after Eastern and we tried to put her in a different hospital. In the end, we could get a catheter for her, but it was the only thing we could do. I was there and my interpreter was there, and we had tons of connections to different hospitals but it was just not possible. And seeing the husband changing the sheets and doing everything, you have the feeling, This should be the job of the nurse…but it’s not.
I felt I could understand how you would start to lose the energy and how hope could be easily squashed by the environment. That place in their head where it starts to be too much. I read another interview that you did where you mentioned you could leave the country at the end, but it might be harder on your interpreter because he stays behind. Can you talk a little bit about your relationship with your interpreter and why it was, maybe, harder for him?
Actually, he was more my interpreter and not my fixer. I sometimes had the feeling that I was the fixer and I am the pulling person who is taking him into all these clinics. And he is telling me, "But it is written. We are not allowed to enter." And I say, "But we enter."
That’s true, sometimes I feel the same way, "No, no, we’re going!"
So I think he often hated it, or me...to go to tuberculosis hospitals or hanging around with annoying drug-addicts...but I think it was just more difficult for him, because it’s his country, and his city, and his language, and his people suffering. I think then you are just closer. I guess it’s a different feeling.
Did he know a lot about the problem when you started?
No, not at all. At the first appointment he thought he might get AIDS because we were drinking tea out of a cup. And the second time he thought maybe now he could get the virus, because he used the toilet in the AIDS clinic. So in the beginning it was a bit difficult, but then he also got to know about the project and about the situation. The other thing, I think, which makes it easier for the photographer, is that you have something to do. If you are in this horrible room, and it stinks, and it’s just full of people coughing, and it’s just so hopeless—you still have the camera. I think it’s helpful that you have this thing and you have something to concentrate on. But the interpreter doesn’t. And besides, he hears all these horrible stories twice. They are going through him to me. I think sometimes I just took pictures to go through a situation. I just took the camera to put my focus on something else. I just took the picture to—and then you have all these horrible things and somebody’s crying, and you simultaneously have the feeling that you have to take the pictures and you start to think about the light, and think about this too. You feel a lot, but for the interpreter—for him it’s just his job. He doesn’t have the same big interest in the project as you. When it was getting late he just wanted to get home to his family. He was like, "I think we have to stop now, because I have to get home." And I was like, "But we can’t go now!" You are driven to something, and that makes you go.
Subjects from your book, they’ve passed on. For me, the first girl from my project that passed away, I had access to her funeral but I, physically, almost couldn’t take the pictures because I had become friends with her. So it was one of my subjects and one of my friends, I felt, had passed away. How was your experience? Now I feel like we are in therapy...
I actually never thought that I could take these pictures. If you would have asked me before this project I would have definitely said that I wouldn’t take any pictures at the funeral or even the crematorium. But somehow I did. There were three people actually dying at the same time. So Igor, he was also in the book, I found him dead and I had to tell the nurses that he was dead. And then one other, Oleg, another man in the AIDS hospital, but there they didn’t tell us, they told us a couple of days later when the funeral was already over. And with Tanya, we were almost the only people her husband could talk to, we were in the hospital every day for the last week. It was also that he wanted me to be there. I took—maybe it’s like I said before—it was so hard that I took pictures just to do something. Like the opposite way you were reacting, and I felt hurt and I just felt bad, but somehow it helped me doing something.
I agree. It’s interesting how you said before you wouldn’t but through this whole experience you felt compelled.
Yeah, and maybe before I didn’t know how much of a photojournalist or a photographer I was. I just thought I wouldn’t do this, but somehow there was this strong feeling that I really needed this picture, even if it’s not nice of me to stay with my camera in front of this couple and take the picture, but somehow I had to. I don’t know.
After you completed this project where did you want to find a home for it? Did you feel it was difficult to get a piece on AIDS published? Do you think there’s AIDS fatigue?
Yes, it was difficult to find a place for the project. Some magazines just had done something on AIDS and one magazine had just done something about Ukraine recently, that’s why they wouldn’t do it. Many magazines in Germany also found it just too hopeless. They always want to have at least a little bit of hope in the end, for their “anonymous reader” and my project just has no hope at all. And it was funny, the only magazine who published it, I would not have thought they would do it. But I was lucky that I came in contact with Hatje Cantz, the publishing house, only about three months after I did the project, and they decided to do the book. And because of the book I was confronted with exhibitions, I had some shows with the pictures in Germany, and now this small exhibition here in New York. I did not think about this before. So it is still a bit weird because the reason I did it was more a journalist reason. I only wanted to tell the story. And now there is much more response from the art world than from the magazine world. This sounds now probably kind of naive—But it was an interesting experience, well, it’s still interesting.
Do you feel like you’ve reached your intended audience?
I think now I probably bring awareness through a different way than I thought before. It’s not through a magazine. But it works. The exhibitions in Germany were different from the one here, too, there were lots of pictures, like 35 or so, and it was more like in the book you could really follow peoples stories. So I guess it’s just getting awareness in a different way. But still I think that it’s more a project for a book. Even in a magazine. When it was in this one magazine and they really did it nice, I somehow had a strange feeling putting my subject or my people in this magazine between all this advertising, it’s weird. But in this book it’s safe.
Did you self-fund this project, or did you find grants? Any advice?
I funded this myself. I think that it’s important that you find out what you’re best in and what you really want to do. For me, I think it was an important step to understand that I am kind of good working close to people and that people trust me. And I think this is something that you have to find out—what are you good in and interested in. You will do this, and you will succeed— at least I hope! Sooner or later.
You just gave great advice.
No, this is what anyone would tell you. You have to find yourself, otherwise you can’t do good work.