Heller in group
Ali Heller poses with group of women after a focus group in Niamey, Niger.

Letter from the Field: The Other Extreme

by Alison Heller

Over the past decade, obstetric fistula has been effectively branded as a profoundly stigmatizing illness, usually conjuring images of young girls forced into early marriages, “backwards” cultural and religious practices, and victimization by African men. Indeed, this traumatic birth injury, which is caused by prolonged obstructed labor and results in chronic incontinence, has become symbolic of the physical consequences of harmful culture on the quintessentially innocent. However, my experiences in the field contradict (or maybe just complicate) this narrative. Indeed, as I parse through story after story of Nigerien women seeking treatment for obstetric fistula, neither archetypical sufferers nor archetypical stories of suffering emerge. Women’s stories are as diverse as they are – they are young and they are old, they are rejected and they are embraced, they are forced by parents to marry before menarche and they choose when to marry the men they love.

Still, the discourse surrounding obstetric fistula presents one single picture: just a girl, really, who, one by one, is abandoned by her husband, then her community, then her family, until she’s alone. She’s ridiculed. She’s poor. She’s hungry. She’s enshrouded by the indelible odor of urine or feces. Yet out of the 52 women with fistula whom I’ve interviewed and the dozens more with whom I’ve informally chatted, I can count on one hand the few who fit this picture. This archetypical fistula suffer – young, abandoned and crippled by shame – may exist; she’s just at the far end of a multidimensional spectrum.

Fati, a 50 year-old Hausa woman

Fati, a 50-year-old Hausa woman and participant in a focus group on women’s reproductive health – Maradi, Niger

And this week I met a woman who deviates from the norm as much as these abject few. But she’s the other extreme.

I met Aissa at one of the four fistula treatment centers where I work in Niger. Just two weeks ago, Aissa’s catheter was removed. As she whispered “Alhamdulillah,” which means praise to God, over and over, not a drop of urine fell. Her yearlong search for continence resulted in success.

Aissa was 20 years old when she married the man of her choosing. “Soyayya muke,” it was mutual love between us, she told me. He’s her first cousin, and, rather than bring her problems — as auren gida, or intrafamily marriage, does for many other women in the face of reproductive complications — she explained that, because he is her family and her mother-in-law is her aunt, they have no choice but to support her, love her and have patience until God sees her through. And they have done so. Throughout her sickness, she says, her husband never said a bad word to her, he refused her nothing, he never took another wife, and he waited patiently during a year of abstinence while she lived with a catheter.

She contracted fistula during her fourth pregnancy. At a prenatal consultation, she was told that her child had a deformation, an enlarged head that could make a natural birth difficult, if not impossible. As soon as her labor began, her husband rented a taxi (with money he’d saved up since he had heard the news of potential complications). By the time she arrived at a health center, she had birthed the hands and feet of her child, but, as expected, she was unable to birth its head. The nurse reported that the child had already died, but, because the center was not equipped to perform cesarean sections, he pulled with extreme force to extract the baby’s body.

Photo of 18 year old Hausa woman, Maradi

18 year old Hausa woman, Maradi

Soon after, urine began dripping down her legs. Because she’d never heard of any sickness that rendered a woman incontinent, Aissa went home and tried to wait it out. Eventually, through a long and convoluted chain of referrals and misdiagnoses, she arrived at a fistula center. Due to a long backlog for surgeries as well as political tensions that make fistula repair surgery unattainable for many women, the center opted to try an older technique — inserting a catheter for a prolonged period of time, hoping that the respite of urine leaking on the raw tissue in the vagina would allow the hole to heal on its own.

Aissa lived with the catheter connecting to a small bag that collected her urine for eight months. Because she lived close to the center, she spent most of those eight months at home with her family, returning to the center once a week for a check-up. She told me that, while the catheter was physically uncomfortable and she worried that it wouldn’t fix her fistula, she never experienced any mistreatment from anyone. No one refused to eat the food she prepared. No one called her names. No one spit when she passed. Life went on.

You will see, she said. “Come home with me, and you will see. My family will be there waiting. They will say. ‘Aissa is home! Thank God, Aissa is back!’”

Curious, and wondering if perhaps she was withholding experiences of mistreatment, I accepted her offer (which may have been more for rhetorical purposes than an actual invitation, but such impositions are standard — and arguably necessary — for anthropological fieldwork). When we passed through the mud archway of her home, pushing aside the woven grass mat that acted as a door, her sister ran to us. Her 12-year-old daughter flung her arms around Aissa’s waist. They ushered us into a small room with mats on the floor — the only room of the house. Her husband came in grinning. Her four-month-old niece was placed in her arms. Her father, who reclined in the shade, beckoned us. I spent the afternoon sitting with her and her family — listening as they joked, laughed, gossiped and told stories and parables.

Photo of 45 year old Fulani woman, Niamey

45 year old Fulani woman, Niamey

Even if, beyond this placid afternoon, Aissa’s neighbors do gossip about her condition or her friendships do suffer (realities that I will try to uncover over the coming months), the truth remains that Aissa’s experiences of suffering and frustration are overshadowed by her experiences of social support and compassion. And indeed, if we accept only one fistula narrative and deny that, for some, illness doesn’t disintegrate social networks, rather it reinforces them, then we cannot understand what makes Aissa different from women all the way at the other end of the spectrum. Can it all be boiled down to good luck, or is there some confluence of factors (age? parity? ethnic group? severity of fistula? conjugal dynamics?) that predictably determine where on this spectrum a certain woman will fall?

Still, a story of fistula that extols the power of community, love and social embrace would be as much a misrepresentation as the familiar narrative focused on rejection, mistreatment and shame. The truth is that the experience is dynamic, and most women find themselves somewhere in the middle.

So, if we begin to look at the middle of the spectrum for a new fistula narrative, what is it? What ties these women together? Seeking care in a world of disparities and structural inequalities, feeling the shame and frustration that comes from adult incontinence? And what can anthropologists pass on to clinicians to encourage more experiences like Aissa’s and fewer from the other extreme?