Sai Hankuri

A Patchwork of Facts and the Thread of Supposition

In “Where Young Women Find Healing and Hope”, New York Times op-ed columnist Nick Kristof presents the story of a relatively new (and largely foreign donor supported) fistula hospital and of one of its patients. Because this hospital is one of my field sites, one of the four fistula centers in Niger where I’ve spent months and conducted interviews, when the article was published, my inbox was full of links and requests to respond. So here I go.

First, let me be clear. This is not a critique of Danja. I believe in the work that those dedicated to Danja do day in and out. The nurses, doctors, and administrators work long hours to improve the quality of their services. Staff focus on the importance of prevention, understanding that fistula is difficult to fix, and that keeping women from needing them in the first place is the most effective solution.

This is a critique of the way fistula is branded, packaged, and sold to Western audiences. This is a critique of methodology. A critique of sloppy investigation. A critique of the pre-fabricated template, the mad-libs of fistula, where a name and an adjective are swapped out, but the story is essentially the same. And it’s a critique of those who perpetuate these fictions when they ought to know better.

I know Hadiza. And I know Hadiza’s story.
This was not it.

I doubt that this is any woman’s story. Still, it is the story of fistula, born from a marketplace that craves worst-case scenarios, lurid tales in which girls are victimized by lecherous and cruel African men, abused, neglected, and eventually dismissed and discarded. Tales in which girls must be saved. And we Westerners – our goodwill, our dollars – must save them.

According to Kristof, Hadiza is young. Still a child even. She was forced to marry her own uncle. When she got fistula, he threw her out of his house. He had no more use for her. She was shunned. She was ostracized. She was insulted. For years, she endured it. She was hopeless. But then she found the hospital. And it was there that she found hope.

And it isn’t all false. Hadiza is young. And she is beautiful. But I know a fairly different story.

Hadiza was married around 14 to an adopted son of her grandmother – sort of like an uncle, yes. But he was young too, and here family marriages are considered the best kind of matches. She was his only wife. And at the beginning of their marriage they were very happy; they loved each other very much. She tells me that although she was married early, they waited years before consummating their marriage. And when she eventually got pregnant, they were joyous. But, her labor went badly and she was left with fistula. Her husband didn’t divorce her, and he certainly didn’t throw her out – you see, she grew up with her grandmother, in the same house as her husband. When she married, she changed rooms, but not houses. Her home was his home.

But, in the face of her health problems, his behavior changed and his love faded. He began to ignore her, neglect her. After a year with fistula, he took another wife. She returned to her grandmother’s room. Her new co-wife was unkind. Still, “besides him and her, everyone loved me as they had before” she tells me. “But, I feel ashamed of the urine. I am ashamed that I will wet myself, and people will notice, so I mostly stayed home with my grandmother. But my friends came to visit me as they had before. They tried to console me. They told me to be patient, that I’d be cured”.

A few years ago, Hadiza began her search for treatment. And it has been a long road. She’s undergone six failed surgeries, four of which at this hospital, and she continues to seek. Some fistulas are hard to close. Surgery isn’t the silver bullet. After six failed surgeries, it is likely that Hadiza will never go home dry. This part of the story is often left out of these odes to hope.

“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.”

Women with fistula are incontinent, and although the severity of their leaks dramatically vary, they all leak. That said, most women with fistula meticulously tend to their self-care – adapting to their condition, creating homemade barriers or sanitary pads, washing diligently, slathering themselves in perfume. Very seldom can you smell a woman with fistula. Indeed, although they shoulder a heavy burden, they “trail” neither stink nor urine. In fact, many women go years without anyone knowing about their condition, including those closest to them, those with whom they share a house, or even a bed.

“Most have been sent away by their husbands, and many have endured years of mockery and ostracism . . .”

A statement like “most” assumes some sort of empirical understanding. This is a data-driven statement. But where’s the data? For many people writing about fistula, the data comes from anecdotes circulated from one eager mouth to another sensationalist ear. In my sample of 70 women, the majority are in a liminal phase of sorts – not technically divorced, but often not living with their husbands. Indeed, the diversity in experience between “married” and “divorced” is vast. For some, their husbands show little interest in them while they are ill, sending neither money nor support until they are either healed (at which point they will be welcomed back into his home) or deemed incurable (at which point they will be divorced). For others, husbands entrust their in-laws to care for their sick wives better than they’d be able to, sending money and visiting often. Still, many other women have made the decision to leave their husband’s home themselves- angry at him for not caring for them as they ought to, or unhappy with the marriage in the first place, they capitalize on a period of conjugal uncertainty to leave, to start again. And yet, despite the great diversity in the meaning of these separations, most journalists prefer to call all of these women “abandoned” or “sent away”. It’s simpler. Sadder. But unfortunately, not only is it far less accurate, but the assumption strips women of their agency, of their choice in the matter.

And what is ostracism exactly? Is it spatial segregating? Of the women who don’t live with their (sometimes quite supportive) husbands, most others live with their parents, grandparents, or aunts or uncles. Of the women I’ve met, not a single one lived alone. Not one. In fact, many women with fistula share a room, and often a bed, with their mothers, sisters, or grandmothers. Is ostracism something more abstract? “Has anyone refused to eat with you because of your fistula?”; “Refused to share your drinking cup?”; “Has anyone insulted you?”; “Has anyone asked you leave because of the way you smell?”; I ask. The majority of women say no. “Never”. “Really, not once”.

“There is nothing more wrenching than to see a teenage girl shamed by a fistula”

Nearly all of these “girls” have been married; nearly all have carried one or more pregnancies to term. Many sufferers of fistula are in their mid to late-20s, many in their 30s, and some in their 40s, 50s, 60s, and 70s. Does the suffering of a middle-aged woman with fistula count for less than the suffering of a “teenage girl”? Is it less “wrenching”?

Hadiza’s story, Kristof urges, is a testament to the nefarious force of child marriage. Fistula is caused by child marriage, he exhorts. The average age of marriage in Niger is 15. One might consider most marriages in Niger “child marriages”. Still, fistula is rare. Quite rare. And women can get fistula during their 1st delivery or their 15th (and, of course, anywhere in between).

So let me stress the point: fistula is not caused by early marriage. It is caused by the lack of access to quality medical care, particularly during obstetric complications. And access to quality care is not the same as access to care. Indeed, fistula can be caused by a poorly trained clinician keeping a woman at a center for far too long, refusing to refer her to a higher level of care, or performing forceful and inappropriate interventions in the face of an obstetric complication. Early marriage is a cultural scapegoat (as is “uncle” marriage). You see, if backward cultural practices are to blame, we needn’t try to tackle larger political economic forces. It lets us off the hook from building more health centers, making reliable and affordable ambulance services widely available, training more health workers, or ensuring that there is some mechanism of accountability for negligence and malpractice by health workers.

They arrive as “humiliated women and girls with their heads downcast” and leave “courageous and indomitable” with their “heads held high”. And what about Hadiza, who after several operations is still waiting for a cure? Is her head still downcast? Can she be anything but miserable?

Interviewing women about sensitive subjects can be difficult. It takes time to grow a relationship and foster trust. On the surface, many women’s stories seem the same – shame, pain, and hope for cure. But after picking and prodding and posing and prying (a process that takes not just hours, but weeks and sometimes months), their stories take shape, holes are filled in, and the diversity of experiences begins to show itself. Still, it is too easy to cobble together a patchwork of facts with the thread of supposition. Reality fades into to fiction.

When we look for what we want to find, we usually find it. And herein lies the problem – if our minds aren’t open to being proven wrong, they won’t be.