Shifting social, political, and theoretical realities of health research in Niger
My research project was originally designed to follow women with obstetric fistula, a birthing injury, over time as they sought treatment and then returned home after surgery. During prolonged obstructed labor, obstetric fistula results when women cannot quickly access biomedical emergency obstetric care such as Cesarean sections or forceps delivery. The condition results in permanent and chronic incontinence and is nearly nonexistent in the global North; the last fistula hospital in the United States closed its doors in 1895. Thus, sparing the whiter bodies of the wealthy, and seen as an archaic disorder of rural and ‘traditional’ Africa, fistula becomes a lens through which myriad social issues are illuminated. How are distant forms of suffering represented? How do local networks of care expand or contract in times of illness? How is social stigma negotiated? Can surgically repaired bodies lead to repaired conceptions of self and ultimately to repaired social relationships?
Fistula is thought of as profoundly stigmatizing – women are thought to smell and be unable to have children, and it is assumed they will be divorced by husbands and rejected from homes. Portrayed in donor and media narratives as victims of their kin and culture, women with fistula are said to find salvation through a relatively simple surgical repair. Interested in this narrative of stigma and biomedical redemption, I methodically planned a longitudinal study in Niger, hoping to examine processes of destigmatization after women returned home following surgery. I hoped to learn if women’s social relationships were repaired along with their bodies. Yet, like many anthropologists, I found that the project that I had diligently researched and planned, the project for which I had received three major grants and IRB approval, that project simply did not reflect the realities on the ground.
The first major indication of my original project’s impracticability was that women with fistula at clinics were not receiving fistula repair surgeries. In my initial interviews, I found that women with fistula in Niamey had already stayed an average of seven months at their respective clinics, and as long as six years, without having received an operation. Despite having the resources to operate locally, including a dedicated surgical facility and staff, clinics demonstrated a preference for the surgeries to be completed by foreign surgical missions. This preference may have been due to financial incentives: foreign surgical teams pay Nigerien staff for their participation in surgical missions, thus disincentivizing local staff to conduct operations independently. As a result, during my research period there were no regular surgeries in Niamey clinics: operations were performed only two or three times a year when mission teams came, arriving from various counties such as Turkey, Sudan, or China. Typically funded by those countries’ governments, Islamic charities, or the Saudi Arabian government, the teams usually arrived with one or two surgeons, an anesthesiologist, two to four surgical nurses, medical equipment, medications, and – perhaps most important – ‘bonus’ or ‘incentive’ money for local surgical teams. Even then, only a fraction of women at the center received operations (as missions often operated on only the simplest cases). By the time I had completed initial interviews, the majority of the women had not only not returned home, but many – particularly women with complex fistula – still had not received operations.
Secondly, when women finally did receive surgeries, I found that their quest for continence was often far from over. Although many humanitarian and donor narratives suggest that fistula surgeries are quick and relatively simple – fistula surgeries are frequently cited as successful 90 percent of the time – I found quite the opposite. Women experienced multiple surgeries, undergoing as many as eleven failed operations. Contrary to widely cited success rates, in my sample of one hundred women, 44 percent had already undergone three or more failed surgeries, and only 36 percent left clinics ‘dry’. In the first months of my research, as I watched woman after woman emerge from postsurgical recovery wards with the same streams of urine wetting their feet and excoriating their thighs, tempering hopes for ‘normalcy’, I began to understand that I could not study the effects of a change if no change had occurred.
Then, I discovered something that had never been discussed in any literature – neither academic nor popular. Although fistula is assumed to be a highly visible condition, the majority of women with whom I spoke made significant efforts to conceal their condition (often successfully) for years or even decades from their communities, their friends, their families, their co-wives, and – most impressively – their husbands. Through ingenuity, tireless self-regulation, and systemic relational changes, 74 percent of women in my sample had attempted to conceal evidence of their incontinence. Fifty-five women hid their fistulas from all or most of their social contacts. Incredibly, fifteen women were able to successfully conceal their fistulas from even their husbands. The widespread effort to hide fistula meant that my presence alone in a woman’s home could jeopardize her passing as a ‘well’ woman.
The first two issues – the lack of surgeries and poor surgical outcomes – rendered my planned project logistically difficult. There simply weren’t enough women undergoing physical transformation for me to observe if social transformation followed. But this attempt at concealment made my planned project not just impractical but unethical. I had planned to follow women through time, back to their communities to observe how their social lives changed following fistula repair. I wanted to ask: Were they still stigmatized? Did their communities treat them differently? Because fistula is presented by the media and donor agencies as highly stigmatizing – an all-consuming, all-defining trait – I had not previously considered the possibility that women’s families and communities might not know. What alibi would I give for my presence? Would it be ethical to deceive community members? And even if I did, if a woman concealed her condition, how could I study how fistula shaped people’s behavior towards her?
Finally, I landed in Niger the day that French forces intervened in the neighboring country of Mali in order to combat al-Qaeda in the Islamic Maghreb-affiliated groups that had taken over the northern regions. Instability and fear spilled through the porous border. Prison breaks, kidnappings, terrorist threats, suicide bombings, and the growing instability in the south due to Nigeria’s terrorist organization Boko Haram, which had penetrated Niger’s southern border, led to government restrictions on the movement of Westerners like myself. At the beginning of my project, traveling outside of the capital required hiring military escorts. Even if women with fistula were getting surgeries, even if those surgeries were successful, and even if communities knew about both of the above, if I could not freely move within rural areas, I could not follow women back home.
Sometimes the background literature misses something and leads us astray. Sometimes exigencies in the field make our projects logistically unrealistic. Sometimes the political realities render our projects unsafe. Sometimes we realize that parts of our projects or our methods would be unethical. So, we adapt. We go back to the beginning and we think of new and better questions, rendering richer and more relevant data. Like a mantra, I tell my students, ‘Research is iterative’. Iteratively, recursively – through repetition, return, and rebuilding – we move successively closer to capturing lived experience. I’ve found that remaining intellectually agile is our most important anthropological method.
About the author
Alison Heller is a medical anthropologist who studies reproductive health and humanitarianism in West Africa. She received her PhD from Washington University in St. Louis and is currently a traveling faculty for IHP/World Learning. Before beginning as an assistant professor at the University of Maryland College Park, she will complete a year fellowship at the School for Advanced Research. Alison’s research has been funded by the Fulbright-Hays Program, the National Science Foundation, the Wenner-Gren Foundation, the Worldwide Fistula Fund, and PEO International.