My Best-Worst Day in Ukraine: On Research, Relationships and Other Contradictions from the Field
by Jennifer Carroll
“The very existence of my research site is unethical … My university Institutional Review Board (IRB) did not prepare me for any of this.”
–Jonathan Stillo, “Research Ethics in Impossibly Unethical Situations” (posted 21-Dec-2011 on the cac.ophony.org weblog)
Dispensary: The front entrance to a large hospital that houses an integrated treatment program, supported by the Global Fund. Patients here receive treatment for TB,HIV, and opiate addiction all in the same clinic.
Recently, someone commented that my research project is a good match for the foundation that awarded my dissertation grant because, “[that group] likes sexy research.” I was momentarily speechless — a rare event for me. My work? “Sexy?” I had never thought of what I do in these terms. No. My work is slow. And boring. And dirty. It involves lots of smelly night trains and wearing the same shirt for several days at a time. It involves spending lots of money on hand sanitizer and facemasks, always having butter cookies and mediocre chocolates on hand to feed to strangers, and forcing yourself to remember that people who look as though they are on the verge of death aren’t always. There’s no glory in travelling with toilet paper or eating cold pizza for breakfast or feeling like an intruder in someone else’s medical care.
Perhaps there is some truth in my colleague’s observation, though. Perhaps I was guilty of highlighting flashy elements and intrigue in my research. In my funded grant proposal, I described my aims like this:
Forbidden: A resident of a closed tuberculosis ward talks with a family member through the hospital gates. The posted sign reads "It is FORBIDDEN for patients to EXIT the hospital grounds."
This project seeks to investigate how lived-experiences of addiction are shaped by Soviet legacies of health and personhood in an increasingly neo-liberal Ukraine ... Anthropologists who work in Eastern Europe have made significant contributions to the cultural, political and historical spheres of post-Soviet studies; however, we have only begun to scratch the surface of how dominant biomedical paradigms that frame public health efforts on the international stage are re-interpreted with in [this] context.
If you had told me eight years ago, when I was training as an EMT and working in a city-funded needle exchange, that I would one day be describing my work in addiction with words like these, I would have never have believed you; and yet, here we are.
Those are, indeed, my research questions. I am motivated by largely unexamined problems with addiction treatment and HIV prevention efforts in Ukraine that significantly impact people’s lives. I do believe that I am accomplishing what I promised my funders that I was setting out to do. In the moment that I heard my research described as “sexy,” though, I was long past the phase of pitching my work to anyone who would listen. I was past the honeymoon phase of getting funding and dreaming about all the exciting things that were going to happen to me when I finally got to go back to Ukraine. At that time, I was only a month back from the most emotionally complicated situation I had ever put myself in, and it felt anything but “sexy.” Mostly, it just felt exhausting.
HIV Ceiling: The elaborate, rococo-inspired ceiling of this HIV hospital serves as a reminder that this was not always this building's purpose. The beleaguered Ukrainian health care system had to re-allocate structures meant for other purposes to manage this epidemic when it emerged here in the mid-1990s.
If you are a drug addict in Ukraine, chances are you’re getting a pretty raw deal. Private rehabilitation programs are exorbitantly expensive, and state-run programs offer a mish-mash of different services, ranging from 12-step programs to placebo therapy, which are rarely monitored for long-term efficacy. To get into these programs, you have to be diagnosed with drug addiction, which involves being hospitalized for a week so that the doctors can observe you for effects of detoxification. It’s pretty brutal. The prevalence of HIV among drug users is also alarmingly high; it was reported at 22.9 percent in 2010, and this is surely an underestimate (Ministry of Health 2010).
The vast majority of health services being offered to drug users in Ukraine (including needle exchanges and harm reduction services) are offered under the guise of HIV prevention efforts and supported by foreign donors like UNAIDS and The Global Fund. Methadone has been legal in Ukraine since 2004 and has grown to be an integral part of The Global Fund’s HIV-prevention program in Ukraine. There are currently around 6,000 people on methadone, a pittance compared to the countries estimated 290,000 IV drug users (Nieburg and Carty 2012). These programs are where I conduct my research. I am interested in the people who have submitted their addiction and, by extension, their bodies and their lives to the medicalized routine of daily methadone therapy.
Methadone is a logistically burdensome therapy, requiring that addicts appear at local clinics every single day to take their medication under the watchful eye of a clinician. Methadone isn’t an easy drug to take either. If your dose isn’t managed properly, you can become lethargic or, worse, you can start withdrawing at home in the evening with no hope for relief until your trip to the clinic the next day. There is also a significant mythology surrounding methadone. Many patients are convinced that methadone is slowly killing them, breaking down their bones and poisoning their bodies bit-by-bit, day-by-day. One wonders why anyone would ever want to join such a program. At least, I wonder.
Clinic Cats: Feral cats who have made their home at a tuberculosis hospital have a mid-day treat in the office of the lead psychologist.
While I many of the methadone programs I visited were happy places, a memorable few were defined by an uncomfortable malaise. This is that exhausting, “complicated” place I was speaking about earlier. Walking into places where the realities of chemical dependency, medical authority, and deep poverty shape others’ vulnerability is awkward — especially when you have an $80 digital recorder in your hand — especially when the people you’re talking to feel hopelessly trapped in the place you’ve come to ask them about. “This place, it’s the end of the road for them — their last stop on the way to death” the director told me. Unlike the other clinicians I’d met, he claimed to be a former addict himself. Despite this insight into the recovery process, his patients were miserable. They acted harassed and angry. Several times that day I asked myself what the hell I was doing there.
I conducted four interviews at this clinic. Each interviewee refused the audio-recorder (another first that took me off guard). Their responses to my questions about their treatment were curt and cold until I began asking them for their personal assessments of the program. That opened the floodgates:
I: “So how long have you been coming here to this [methadone] program?”
A: “Two and a half years.”
I: “And where did you first hear about the program?”
A: “From a girlfriend.”
I: “She was a patient here?”
I: “And what did she tell you about being treated here?”
A: “That she had so much free time, you know. She’s got work and her kids, and she can take care of those things properly. She said she liked the program.”
I: “And do you like the program?”
A: “See, for me, it’s like this. I came here for the first time, and they were like, ‘Oh, we’ll help you.’ But people are just coming here and they keep coming. The problem here is that there is no detox facility. There is no way to quit the program. I decided that I wanted to quit — to quit the methadone. I talked to the narcologist [a doctor specializing in addiction and addiction treatment] about this, asking them to lower my dose so that I could quit, and they said, ‘Why? Why is this something you want to do on your own?’ And they wouldn’t decrease my dose. So, in reality, there is no possibility of quitting. And, you know, earlier, I was on Methadol [a brand name for prescription methadone]. I took 25-30mg of that. Here, they started me on Methadict [another brand name for prescription methadone]. I’m taking 80mg of that. I don’t feel good on Methadict. They have to give you a dose that’s twice as high.”
I: “So, if you could go back to before you started the program, if you had the choice to make all over again, whether to start this program, would you make the same decision?”
A: “No. No …”
I keep going back to this interview. I read it over and over. I think about it when I am transcribing, when I am editing photos, when I am going over my notes. I have the portion excerpted above memorized in its entirety now. It is a terribly important moment for me. It is a moment when the complicated nature of this work deeply affected me, a moment that changed me.
When teaching research methods, I have often presented this transcript to students as an example of bad practice. Look at the number of limited yes-or-no questions that I asked. Look especially at our last exchange. What was I doing? This person clearly had so much to say, and instead of welcoming her to elaborate, I fed her emotions back to her and asked her to confirm my own description of her experience. Really, I should know better.
I have taught this interview as a cautionary tale. I am from Texas. In Texas we talk fast, loud and often. Repetition and interruption are the two main ways I was taught to signal active listening. So, while I am being a bad interviewer in this piece of transcript, I am being an excellent conversationalist, by Texan standards. The moral of my lesson is that your best features as a social creature — your politeness, your etiquette, your desire for conversational equity — can be your worst enemy when you are acting as a researcher.
Election: In October 2012, President Viktor Yanukovych's Party of Regions retained its political control through what many believe to be massive election fraud. The Party of Regions is notorious for resisting the expansion of HIV treatment and criminalized methadone therapy in Ukraine,.
What I didn’t consider for quite some time — and what I have come to understand only recently — is why the interview devolved as it did. I’m a reasonably experienced interviewer. You won’t see this sort of thing in most of my other transcripts. For all intents and purposes, I do know better. But something here, some social, emotional, personal force, drove me out of my role as a researcher and into one defined by equity and turn taking rather than a unidirectional reaping of information. I realized that when I stopped leading the interview, I started having a conversation. When I look at this transcript now, I no longer see myself, as I once did, falling out of my research protocol. I no longer see an ethnographer struggling with her task or having an “off” day. Instead, what I see is someone bending her speech towards equity, helplessly overtaken by the moral imperative to acknowledge the person sitting across from her as human.
None of the textbooks I’ve read on qualitative research methods talk about this but it happens to all of us. In listening to friends and colleagues who have had similar experiences, I have come to understand that we often trek off excitedly to do our fieldwork completely unprepared for the amount of bold, unfiltered humanity that our research invites into our lives. We ask the world to let us see things that we haven’t seen before, and, wouldn’t you know … the world does. Sometimes, this gave me an incredible feeling of power. Other times, I felt a powerlessness so deep that I couldn’t see the bottom.
Maybe that is what I mean when I say that my research is “complicated” and exhausting. I often put myself in positions where I am subject to competing imperatives: to feel and share my emotions, and to cool them, to check them, to get it together enough to just finish the darn interview. I’m coming to realize, though, that this is just one of many contradictions that make up this job. It is exciting research. But also sometimes it’s boring — and occasionally dirty. It is a positive experience, but sometimes sad, often confusing. It’s about other people, but also about ourselves. Our research is defined by the relationships that we build, its value measured by what we ultimately do with our work product.
I don’t want to leave you with false impressions of my experiences. Most of my interviews were lovely. I met amazing people who have incredible ideas about health and life and democracy. Some of the methadone patients I talked to spoke passionately about freedom to work and the right to healthcare. Others had me in stitches as they told stories about their lives and antics in the clinic. Dozens of people offered me the distinct privilege of sharing their words with a global health system that isn’t always designed or prepared to hear them. So much of my fieldwork was rich and beautiful and incredibly uplifting. But this interview haunts me. Moments like this interview are hard for us because they don’t happen very often. We find ourselves in uncharted territories where we don’t always understand our power, our role, or our responsibilities. But we don’t slog through this territory for its flashiness or social intrigue. Such moments are valuable simply because they are so uncommon. They are easy to come across if you go out looking for them, though.
Ministry of Health of Ukraine. (2010). National Report on the Progress Towards the UNGASS Declaration of Commitment on HIV/AIDS (Reporting Period: January 2008-December 2009). http://www.unaids.org/en/dataanalysis/monitoringcountryprogress/2010prog... , <Accessed October 10, 2011>.
Nieburg, P. and Carty C. (2012). Injection Drug Use in Ukraine: The Challenges of Providing HIV Prevention and Care. Washington D.C.: Center for Strategic and International Studies. http://csis.org/files/publication/120314_Nieburg_InjectionDrugUkraine_we.... <Accessed January 20, 2013>.