Women with fistula: "The lepers of the 21st century"

Millions of women worldwide suffer from incontinence, infection and resulting stigma that a $300 surgery could fix

Published November 2, 2009 3:03PM (EST)

Among the many dangers, miseries and horrors experienced by millions of women worldwide and highlighted in Nicholas Kristof and Sheryl WuDunn's new book, "Half the Sky," obstetric fistulas -- small tears between the bladder and vagina or rectum and vagina, most often created during childbirth, leaving the woman incontinent -- are one of the few problems with an obvious solution. They're also one of the most invisible problems to those of us who live in wealthy countries where giving birth has become a much safer process, and fistula repair is easily accessed when necessary. But the 3 million to 4 million women living with untreated fistulas worldwide, wrote Kristof in the New York Times this weekend, are "the lepers of the 21st century." A woman with the condition "stinks. She becomes a pariah. She is typically abandoned by her husband and forced to live by herself on the edge of her village. She is scorned, bewildered, humiliated and desolate, often feeling cursed by God."

In a 2006 essay for Salon, American writer Abby Frucht described the experience of living with a fistula for five months between the hysterectomy that caused it (the doctor accidentally cut a hole between her bladder and vagina during surgery) and the time when she was healed enough to go in for the repair. Frucht availed herself of the accessible  luxuries of a developed country -- adult disposable diapers, catheters, doctors who knew what to do about the infections fistula typically causes. And still, her description of how this tiny hole came to restrict her movements, affect her relationships, ruin her possessions, and routinely frustrate and humiliate her is shocking. "There's no sense rushing [to the toilet], no sense in toilets at all," she writes. "There's only this upended pitcher that I struggle to maintain is ordinary." Having some control over the time and place of elimination, something most of us take for granted, begins to look like a priceless gift. After she gets soaked in urine while shopping for a new coat, Frucht says, "The girls at the counter wrinkle their noses, stifle their horror. I imagine them making their casual way to a bathroom, relieving themselves. I imagine them wiping, drying themselves. Every woman I see, I think of this."

Frucht had to live that way for five months, with the support of a loving boyfriend who, in response to her fear that she'd be incontinent forever, said, "If there's nothing they can do about it, we'll live with it, Hon." Dr. Lewis Wall, an OB-GYN at Washington University in St. Louis, told Kristof, "In Liberia, I saw a woman who had developed a fistula 35 years earlier. It turned out to be a tiny injury; it took 20 minutes to repair it. For want of a 20-minute operation, this woman had lived in a pool of urine for 35 years." Of that surgery, which costs about $300, he says, "this is life-transforming for everybody who gets it done. It's astonishing. You take a human being who has been in the abyss of despair and -- boom! -- you have a transformed woman. She has her life back."

Since 1995, when he founded the Worldwide Fistula Fund, Lewis "has been campaigning tirelessly year after year to build a fistula hospital in West Africa." Finally, one is going to be built -- next to a leprosy hospital -- in Niger, with the aim not only of repairing fistulas but "organiz[ing] outreach efforts to promote maternal health and reduce deaths in childbirth. It will also undertake education and microfinance efforts to empower women more broadly." Lewis has a plan to build 40 such hospitals in developing countries, with the goal of eradicating fistula across the globe, at a cost of $1.5 billion, which he hopes Congress will approve as an American foreign aid program. Says Kristof, "I can't imagine a better use of foreign assistance dollars -- or better symbolism than having the most powerful nation on earth reach out to help the most stigmatized, suffering people on the planet."

To create the will to help those people, though, more of us will have to acknowledge that the problem exists and overcome our squeamishness enough to think and talk about it, to imagine "suffering constant infection and dripping urine, or feces, wherever [you] roam," as Frucht put it. We'll have to imagine what it's like to be shunned by your family and community for an injury that could be repaired with a short, $300 operation -- but never will be if you don't live in an area with a hospital equipped to do it. Kristof and WuDunn have brought attention to a long list of agonies and atrocities faced by women around the world, which, taken together, are so overwhelming it's hard to know where to begin addressing them. But here is one that actually has a clear solution that would immeasurably improve millions of lives.  

By Kate Harding

Kate Harding is the author of Asking For It: The Alarming Rise of Rape Culture--and What We Can Do About It, available from Da Capo Press in August 2015. Previously, she collaborated with Anna Holmes, Amanda Hess, and a cast of thousands on The Book of Jezebel, and with Marianne Kirby on Lessons from the Fat-o-Sphere. You might also remember her as the founding editor of Shapely Prose (2007-2010). Kate's essays have appeared in the anthologies Madonna & Me, Yes Means Yes, Feed Me, and Airmail: Women of Letters. She holds an M.F.A. in fiction from Vermont College of Fine Arts and a B.A. in English from University of Toronto, and is currently at work on a Ph.D. in creative writing from Bath Spa University

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