Fistula Politics

Birthing Injuries and the Quest for Continence in Niger

Alison Heller

• Publisher: Rutgers University Press
• Year: 2018
• ISBN:
  9781978800380
• Topic: Ciencias sociales
• Subtopic: Sociología

Obstetric fistula is a birthing injury caused by prolonged obstructed labor that results in urinary and fecal incontinence. It is nearly non-existent in the Global North. In contrast Niger, in West Africa, has one of the highest rates of fistula in the world. In Western humanitarian and media narratives, fistula is presented as deeply stigmatizing, resulting in divorce, abandonment by kin, exile from communities, depression and suicide. In Fistula Politics, Alison Heller illustrates the inaccuracy of these popular narratives and shows how they serve the interests not of the women so affected, but of humanitarian organizations, the media, and local clinics.

1 • INCONTINENCE AND INEQUALITIES

I came to know Fana, a 42-year-old Tuareg woman originally from Mali, at an obstetric fistula center in Niger’s capital city, Niamey. Twenty-six years before we met, she had developed a birthing injury following complications during her first childbirth. Although the internal damage had been repaired seven years prior, the deep social, economic, and emotional scars continued to mark her everyday existence.

Fana was married at the age of 15 and soon after became pregnant. When her contractions began, she refused to acquiesce to the supplications of her family to deliver in the neighboring village’s health center, its reputation tarnished by a string of recent maternal mortalities. Fana, who more than 25 years later remained just as stubborn, remembered how her resistance never wavered, even as her labor failed to progress for two days, then four, and finally seven full days. With each sunset, the quiet concern of her family swelled. Still, Fana reasoned that her chances of survival were better if she just stayed home.

After a full week of labor, Fana delivered a stillborn baby boy. Five days later, a persistent trickle of urine began to leak from her vagina. It did not stop for two decades.

Like many women who develop fistula, neither Fana nor her family had ever heard of the condition. Yet for the next 19 years much of Fana’s life was dedicated to managing her incontinence and looking for treatment. Her quest for corporeal and social “normalcy” spanned five pregnancies, four husbands, three decades, two living and two stillborn children, one failed surgery, and—finally—a success: Fana was healed seven years before we met. But most women’s pursuit of normalcy does not end with continence. Nor did Fana’s. Long after the hole was sewn shut and the perpetual wetness had dried, her life was shaped by fistula and her tortuous quest for a cure.

Fana’s story is one of economic deprivation, only exacerbated by the political turmoil in northern Mali, where the rise to power of the militant organization al-Qaeda in the Islamic Maghreb (AQIM) worsened her ill health and pushed her to cross the border into Niger. Her experiences with fistula were shaped by conditions of poverty and structural violence. Fana’s fistula was both caused by and resulted in poverty. Yet her story is also one of unlikely empowerment within a context of major constraints. Through necessity, Fana learned to advocate for her own health care, fight for the custody of her daughter Safi, and negotiate new rules with her latest husband and co-wife. Her story extends across decades, borders, and marriages. The causal connections are complicated. And contrary to many media and humanitarian portrayals of women suffering from fistula in sub-Saharan Africa, Fana is anything but passive. In the pages that follow, Fana’s words, and the words of 99 other women with fistula in Niger, bring to life how this birthing injury is experienced, lived with, treated, hidden, resisted, capitalized upon, and integrated into everyday life.

In a world of one-percenters and the “bottom billion,” where the space that separates people within and between countries is ever expanding, the consequences of inequality and the concentration of power pervade everyday life. Maternal health is a particularly powerful area for thinking about the winners and the losers of global exchanges and local connections. Global disparities in maternal mortality rates—that is, the deaths of women due to childbirth or pregnancy—between resource-rich countries and resource-poor countries are astonishing. They are among the largest of any vital indicator.

In sub-Saharan Africa, one in 36 women will eventually die from pregnancy-related complications. In the often overlooked West African country of Niger, the number is even higher. One in 23 Nigérien women will die from maternal causes. This begins to make sense in the low-level clinics of rural Niger: nurses and midwives may have purchased their degrees without hands-on training, and a practice called “abdominal expression”—physical force applied to the woman’s abdomen by a practitioner’s knees, elbows, or an external object during labor—is common. Poor access to often poor quality health services produces poor outcomes. To give some perspective, following the perilous route many West African migrants attempt every day to the north of Niger through the Sahara, across Libya and the Mediterranean Sea in Greece, the lifetime risk of maternal death for women is more than one thousand times lower: 1 in 23,700 (World Bank 2018).

Despite the high rates of maternal mortality, for every woman who dies from obstetric complications in Niger approximately 10 more suffer from severe acute maternal morbidity (Prual et al. 1998). These women experience severe complications in pregnancy, labor, or the postpartum period. Counted as “near misses,” on the threshold of life and death, they survive—yet this survival comes at a cost. As a result of obstetric complications or poor management, an estimated 10 to 20 million women develop obstetric-related disabilities each year (Filippi et al. 2006). Some injuries are common; for instance, in the Gambia, nearly half (46 percent) of all reproductive-age women sustain pelvic damage from childbirth (Walraven et al. 2001). And some of the injuries are uncommon but life altering, as is the case with obstetric fistula. Although hemorrhage, hypertensive disorders, and sepsis are all important contributors, obstructed labor—the cause of obstetric fistula—is the leading cause of maternal morbidity in Niger (Prual et al. 1998).

Fistula might be imagined as a physical manifestation of global inequity, local disempowerment, spatial precarity, and economic vulnerability. Although between 1 and 2 million women live with fistula in the Global South, predominantly in sub-Saharan Africa, it is nearly nonexistent in the Global North (Adler et al. 2013; Lewis, De Bernis, and WHO 2006). The last fistula hospital in the United States closed its doors over one hundred years ago, when biomedical obstetric care became widely accessible. And while globally anywhere from 6,000 to 100,000 women develop fistula each year, very few come from cities, in Africa or elsewhere.¹

Fistula is often referred to as a condition of poverty, but it is also a condition of rurality. No matter how destitute, a woman living in a city like Lagos, Abidjan, or Niamey is unlikely to labor at home for a week as Fana did before making her way across town to a hospital. Even a woman of relative means deep in the Sahelian grasslands cannot move a health center closer, improve the conditions of the roads, or ensure that a qualified practitioner equipped with necessary materials can be found when she eventually arrives.

Fistula can more accurately be called a condition of regional rather than individual poverty, although the two are tightly entangled. It is a consequence of power differentials between multiple actors at multiple scales, ranging from the local to the global—between, for example, husbands and wives, practitioners and patients, and multinational trade organizations and Nigérien government officials. Fistula results from vulnerabilities to global, regional, and household-level poverty, to gender inequalities, and to reproductive demands.

Relegated to far corners of the rural Global South, obstetric fistula has until recently been shrouded in relative obscurity. But an increase in international attention to the condition has spawned a proliferation of organizations and institutions focusing on fistula prevention and surgical repair across sub-Saharan Africa.² Fistula is no longer thought of as a lifelong condition of incontinence; biomedicine now offers hope for a full recovery. However, despite media and humanitarian accounts of fistula surgery as a relatively straightforward and highly effective intervention, for Nigérien women the pursuit of surgery often involves disappointment—long waits and frequent surgical failures. As a result, the lives of many women in Niger are transformed twice: once by a delivery gone awry, and again by the quest for continence, which can take them away from their families, husbands, and their social, productive, and reproductive lives for months, years, and sometimes decades. These absences are socially and emotionally (and sometimes financially) costly. Yet, despite the high price of treatment, women remain tethered to fistula centers by their hope for a cure and their faith in the power of biomedicine. This often misplaced confidence in surgery’s promise to reestablish bodily and social integrity is fueled by the clinics and their financial interests in holding women.

By engaging with the women whose lives have been transformed by the condition, in this book I read through fistula to illuminate many larger questions about power, biomedicine, stigma, resilience, care, kinship, commodification, and representation within the context of illness and treatment-seeking in sub-Saharan Africa. This exploration of the lives of women with fistula enables us to better understand how women whose agency is constrained—by rurality, age, ethnicity, poverty, and parity—navigate the West African health care systems that have been privatized and decentralized by half a century of neoliberal policies.

This book’s title, Fistula Politics, reflects not only the fraught and contested struggle over limited resources and the power to define and diagnose that play out in the public health sector, but also alludes to the broader politics of gender, Islam, biomedicine, humanitarianism, and a postcolonial global order. Throughout this book, I explore the manifold competing and collaborative power dynamics that shape women’s social worlds, expose them to stigma, and determine their access to and outcomes of care.

Countless stakeholders have something to gain or lose when working with women with fistula. Competing for limited pots of funding and fleeting public interest, international nonprofit organizations are invested in highly choreographed narrative control. Niger’s underresourced, weak public health infrastructure depends on funding from these same multinational nonprofit organizations. Fistula surgeons and their staff gain international visibility, prestige, paychecks, and per diems through often exploitative and frequently harmful biomedical encounters from which women struggle to disengage.

But it is not just the biomedical and public health establishment that has a stake in fistula politics. Husbands fear fistula’s implications for their wives’ fertility and their own social status. For co-wives, fistula changes the balance of power in the endless competition over scarce emotional and material household resources. In-laws may see fistula as the point to cut and run from a failed investment. Local religious leaders grapple with questions of purity, piety, and obligation after reproductive failure. And, ultimately, fistula marks a bodily, social, and perceptual rupture for the women it affects, requiring their skillful navigation of their own corporeal boundaries while remaining both socially visible to those back home and ontologically recognizable to themselves. These multileveled patterns of cooperation and contest where a panoply of actors have a stake in fistula and its outcome determine Nigérien women’s experiences, helping to explain their vulnerability to fistula and mediating their success or failure in treatment-seeking.

These intersecting macro and micro politics actively shape a woman’s vulnerability to fistula stigma and her power to resist it. Fistula politics help us to understand whose interests are served by the application of fistula stigma, and how that stigma manifests and transforms throughout a woman’s life. When we understand the politics at play, we can ask whether surgically repaired bodies lead to repaired conceptions of self and ultimately repaired social relationships. How is social stigma negotiated in the face of illness and treatment-seeking? How does the stigma of fistula grow out of and illuminate attenuated structures of support? How do local networks of care expand or contract in times of illness? How can co-wives be both integral parts of and the greatest threats to women’s conjugal health? How might treatment-seeking be paradoxically harmful, and how might that be a result of the media and humanitarian organizations that aim to help? These questions—how, why, and when women’s identities are reconfigured following fistula—undergird this book.

REPRESENTATION

Fistula is a lens that allows us to better understand how distant forms of suffering are represented, commodified, and medicalized, and why this matters. Because fistula spares the whiter and wealthier bodies of urban women—it is a condition almost unimaginable in Western bodies—it has come to be seen in the Global North as an archaic disorder of “traditional” Africa, affecting poor, brown-bodied women in the “deepest” parts of the continent.³ Often conceptually coupled with female genital cutting (a spurious link), fistula has captured the imagination of the West, where damaged genitals become a synecdoche for the oppression of African women who are rendered invisible and silenced by culture and religion.

Recognizable representations of fistula and the women who suffer from it are most visible in Western media and humanitarian donor fistula narratives. Recall the story of Fana that opened this chapter: a narrative of frustration, hope, loss, resilience, and chronicity. In contrast, Jamila’s story is similar to many popular and humanitarian portrayals of fistula’s passive victims. In his New York Times editorial, “Where Young Women Find Healing and Hope,” Nicholas Kristof (2013) introduces Jamila as a patient at Niger’s Danja Fistula Center, drawing from and reproducing the familiar narrative tropes of fistula:

DANJA NIGER—They straggle in by foot, donkey cart or bus: humiliated women and girls with their heads downcast, feeling ashamed and cursed, trailing stink and urine …

The first patient we met is [Jamila Garba]; with an impish smile, she still seems a child … Her family married her off at about 11 or 12 … She was not consulted but became the second wife of her own uncle.

A year later, she was pregnant … She suffered three days of obstructed labor … The baby was dead and she had suffered internal injuries including a hole, or fistula, between her bladder and vagina …

Jamila found herself shunned. Her husband ejected her from the house, and other villagers regarded her as unclean so that no one would eat food that she prepared or allow her to fetch water from the well when others were around … She endured several years of this ostracism …

A few months ago, Jamila heard about the Danja Fistula Center and showed up to see if someone could help. Dr. Steve Arrowsmith, a urologist from Michigan … operated on Jamila and repaired the damage …

Women who have suffered for years find hope here … They are courageous and indomitable, and now full of hope as well.

I knew Jamila. I met her in February 2013 while I was in Niger researching women with obstetric fistula, six months before Nicholas Kristof’s visit to the Danja Fistula Center. This was not how I would have told her story. Kristof’s take is an exemplar of how fistula is often presented by a global media—worst-case scenarios, lurid tales in which girls are victimized by African men: abused, neglected, broken, dismissed, and discarded. Tales in which brown-skinned girls must be saved, and Westerners—their goodwill, their dollars, their surgeons, and their scalpels—must save them. In these tales, through Western humanitarian efforts and technological solutions, women are transfor...

Table of contents

• Cover
• Series Page
• Title Page
• Copyright
• Dedication
• Contents
• Foreword by Lenore Manderson
• List of Abbreviations
• Note on Terminology
• 1. Incontinence and Inequalities
• Part I: Living Incontinence: Laraba’s Story: Rejection, Resistance, Refusal
• Part II: Clinical Encounters: Six Beds, Sixty Minutes
• Part III: The Marketplace of Victimhood: Arantut’s Story: The Other Extreme
• Appendix
• Acknowledgments
• Notes
• Bibliography
• Index
• About the Author