Fistula Survivors: Stories from Uganda and Sudan

EngenderHealth

From Halima’s self-assured manner in the delivery room of Darfur’s Al-Fasher Hospital, an observer would never guess how far this former fistula sufferer has come.

This article is part of a series by Rewire with contributions from  EngenderHealth, Guttmacher Institute, the International Women’s Health Coalition, the Fistula Foundation, the United Nations Population Fund (UNFPA), and the Campaign to End Fistula.  All articles in this series represent the views of individual authors and their organizations and can be found at this link.

From Halima’s self-assured manner in the delivery room of Darfur’s Al-Fasher Hospital, an observer would never guess how far this former fistula sufferer has come. Now a certified village midwife, 25-year-old Halima assists in childbirth, saving the lives of mothers and babies and providing them valuable emotional support.

Halima’s empathy derives from her own story as a fistula survivor. Halima has overcome the deaths of two children, abandonment by her husband, and two childbirth-related injuries to become a trusted health care professional. She says, “My treatment and my education have given me a new life, one full of hope.”

Halima’s first pregnancy ended in tragedy. Without access to medical care in the remote Marra Mountains in war-torn Darfur, she saw her baby die in childbirth. “From my village, it takes a whole day to reach the hospital walking or by donkey,” she says. As a result of the prolonged labor, a fistula developed. Even so, she became pregnant again. Another difficult labor ended with a stillbirth and a second fistula. Soon thereafter, Halima’s husband divorced her.

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Sifa’s story of surviving fistula in Uganda. Video courtesy of Engender Health and USAID.

Halima was referred to Al-Fasher Hospital in Darfur, a facility that received training and funding for its fistula repair and prevention program from EngenderHealth. Two operations were needed to repair Halima’s fistulas. In gratitude, she volunteered at the hospital, translating from Fur, her native language, into Arabic, an essential task in diverse Darfur.

The doctors soon noticed Halima’s extraordinary ability to correctly identify the birth complications and problems of incoming patients, as well as her thoroughness in the critical task of monitoring the catheters of women recovering from fistula repair surgery. Perhaps most valuable was the indispensable counsel and emotional support she was providing to fistula sufferers, sharing with them her story of healing and renewed hope.

Sensing her potential as a health care provider, the doctors enrolled Halima in Al-Fasher Midwifery School. Twelve months later, Halima graduated third in her class of 85 and became a village midwife. She has since assisted at more than 60 deliveries throughout Darfur.

Caring for patients and providing help in translation has earned Halima the affection and admiration of the hospital staff, patients, and community. Emotionally and physically healed, Halima is now a trusted midwife. Her work, she says, is her life: “All that matters is that I help my fellow women and their children, that they will not know the suffering of so many others.”

Culture & Conversation Maternity and Birthing

Exploring Birth Justice: A Conversation With Julia Chinyere Oparah and Alicia Bonaparte

Kanya D’Almeida

Rewire delves into the emerging birth justice movement and some of the historic and contemporary examples of how Black women and women of color, as well as trans and gender nonconforming people, have fought to preserve pregnancy and childbirth as a safe and sacred experience.

The numbers surrounding maternal and child health are bleak: Black women are three times as likely to die giving birth as their white counterparts; infant mortality rates for Black children are three times higher than those of white kids; and despite a widely held belief that vaginal deliveries are the safest route for both mother and child, women of color represent the highest cesarean rates of any other demographic in the United States.

Behind these statistics, however, are powerful stories of grassroots childbirth activists and traditional birth workers of color, including midwives and doulas, coalescing for “birth justice.” Building on a long history in which Black women and women of color have resisted birth oppression through the centuries, the term birth justice was coined in an effort to foreground activism and justice for birthing parents in movements around reproductive justice and Black lives.

A newly released anthology titled Birthing Justice: Black Women, Pregnancy and Childbirth explores some of the key issues within the nascent movement, including efforts to end the criminalization of pregnant women of color and trans or gender-nonconforming people, advocacy that aims to expand access to traditional and indigenous birth workers, and struggles to resist medical violence. The anthology is a project of Black Women Birthing Justice, a collective dedicated to transforming birthing experiences for Black women.

Foregrounding the stories in this collection are historical analyses of medical violence and “medical apartheid,” which shaped the fields of obstetrics and gynecology in the United States, as well as a close look at the ways in which “a patriarchal medical establishment seeks to control women’s bodies.”

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In an interview with the book’s co-editors, Julia Chinyere Oparah, co-chair of ethnic studies and director of the Research Justice at the Intersections Scholars Program at Mills College, and Alicia Bonaparte, associate professor of sociology at Pitzer College, Rewire delved into some of the intersections between the emerging birth justice movement and the broader reproductive justice movement, and explored some of the historic and contemporary examples of how birthing parents have fought to preserve pregnancy and childbirth as a safe and sacred experience.

Rewire: Walk us through the current landscape of the birth justice movement.

Alicia Bonaparte: I consider this a movement that is designed to respect the rights of all individuals who aspire to become birthing parents and have a child in a supportive environment: one in which the birthing parent has autonomy over their body and the ability to choose the ways in which their birthing process flows, from the prenatal to the postpartum process.

Julia Chinyere Oparah: This is a movement led by Black women and women of color, so the focus is on dismantling inequalities around race, class, citizenship, sexual orientation, and all of the intersecting oppressions that lead to negative birth outcomes, particularly for women of color, trans folks, low-income communities, and immigrant women. We are working toward reclaiming a midwifery tradition that originates within communities of Black women and women of color, and making sure these communities have access to these alternative birthing practices, including doula services. We are trying to raise awareness and build grassroots power, so we focus on ways in which communities can come together, talk about the violence, coercion, and neglect that’s happening in medical contexts, and work together to improve birth inequalities. We look at disproportionate maternal and infant mortality as the very visible tip of the iceberg, but we also go further to examine issues that might not necessarily cause mortality but that lead to pain and lasting trauma.

Rewire: What are some of the synergies between the reproductive justice (RJ) movement and the birth justice (BJ) movement? Are there distinctions between the two?

JCO: The BJ movement is part of the broader movement to dismantle reproductive oppression. Both the RJ and BJ movements aim to decolonize our bodies, and both advocate for the right of every person to choose whether or not to carry a pregnancy to term. Many of us in the BJ movement are birth activists who come from the RJ movement, so there isn’t a huge difference in terms of our frameworks, which are really intersectional. The only real difference is that we try to center issues that sometimes get sidelined in the larger RJ movement, such as fighting the stereotyping of women who choose home births as selfish and irresponsible, or highlighting the disproportionate impact of VBAC (vaginal birth after c-section) bans on women of color. We foreground the right to choose when, where, how, and with whom to birth, and try to lift up experiences that have been somewhat invisible in reproductive justice organizing, such as the right to access traditional and indigenous birth workers.

AB: Another synergy is that both the RJ and the BJ movements aim to lift the voices of women of color and resist a narrative that is dominated by white middle- and upper-class women. Both movements also aim to push beyond the narrow boundaries of “choice” and instead use a lens of economic and racial justice. But the movements diverge slightly when it comes to policy. Birth activists are trying to raise legal and policy issues that would, for instance, force insurance companies to pay for midwife-assisted births. Nationally, midwifery services covering everything from prenatal to postpartum care run between $6,000 and $8,000. In comparison, hospital births can cost upwards of $15,000, depending on what interventions are deemed “necessary” for the birthing parent. So midwifery-assisted birth is actually cheaper than a hospital birth assisted by an OB-GYN, and yet policy fails to address this—so this is something the birth justice movement is fighting for.

Rewire: The book talks a lot about medical violence and medical apartheid. Can you explain these terms, in both historical and contemporary contexts?

JCO: Both terms refer to the ways in which the bodies of Black people, both alive and dead, have been made into sites of medical examination, to achieve medical advances that improve the health of white communities. It’s important to foreground Black women’s stories here: such as the story of Anarcha, an enslaved Black woman who was forced to endure a series of horrendously painful medical experiments at the hands of J. Marion Sims, a white physician who is often held up as the so-called father of modern gynecology for “pioneering” a technique to repair vaginal fistulas (a condition caused by traumatic or obstructed labor resulting in an opening between the birth canal and the bladder or rectum) by experimenting on Black women with fistulas. Scholars like Harriet Washington have documented the legacy of American obstetrics, in which the bodies of enslaved Black women have been used to further birth options for white women. She documents the work of Louisiana surgeon Francois Marie Prevost, who “introduced” the cesarean section in the 1820s. At the time, opening up a woman’s abdomen was considered a death sentence, yet this was exactly what was done to Black women in the name of advancing medical techniques.

AB: An example of contemporary medical apartheid might include the ways in which, for example, Black and Hispanic women receive disproportionately fewer screenings for potential birth complications like preeclampsia. The medical establishment is grounded in racism, classism, and inherent sexism, and so unfortunately these axes of oppression come to the fore in doctor-patient relationships. Involuntary c-sections are another example of medical violence in the way we see women of color experience far higher rates of c-sections than white women. In particular, women of color are coerced by OB-GYNs and nurses [who convince them] that they are acting in the best interest of the child, despite the fact that many of these c-sections are unnecessary and unwarranted. We see hospital workers like nurses resort to fear-mongering to create the narrative that you are not a good mother if you don’t subject yourself to the unnecessary interventions and processes that the medical establishment has chosen for you, and this also hits Black women and women of color hardest.

Rewire: Who are “birth revolutionaries,” and how are they reclaiming natural birthing traditions?

JCO: Two sections in the book, “Changing Lives, One Birth at a Time” and “Taking Back Our Power: Organizing for Birth Justice” really lift up the stories of birth workers and birth activists working to change the systems, policies, and spaces surrounding pregnancy and childbirth. The word “revolutionary” suggests that the movement is not only about reform and tinkering around the edges, so to speak. We are not looking to simply reduce disproportionate mortality rates; we are seeking a fundamental transformation of the conditions under which we become pregnant and give birth so these inequalities no longer exist. One example I can point to is Tina Reynolds and the Women on the Rise Telling HerStory initiative, an advocacy organization comprised of current and formerly incarcerated women resisting the brutality of the prison system, such as the shackling of women during labor.

AB: I co-authored a chapter in the book with a Black birth revolutionary named Jennie Joseph who works to change deleterious birth outcomes for women. She has worked specifically in the three counties in Florida that have the worst maternal and infant health outcomes for women of color and has created a program called the JJ Way, which unites volunteer community health workers with birthing parents in underrepresented and underserved neighborhoods to improve overall health outcomes. Such efforts amplify birth advocacy and activism for the benefit of the entire community, and I would argue that this is revolutionary.

Rewire: The book discusses the “commercialization” and “co-optation” of traditional birthing practices. Can you tell us what this means?

AB: If you have a global perspective on childbirth, you will notice that midwife-assisted births are the most common form of delivery worldwide. Here in the United States, however, midwifery has long been denigrated by the white medical establishment, and associated with superstition and other “non-scientific” practices. Birth workers have fought against this quality versus quantity approach, which frames hospital births and all their attendant interventions as being the better option. This is largely the result of living in a highly consumer-driven society.

JCO: The other side of the coin is that natural birth and midwifery activists have achieved greater acceptance of these practices, but this has not opened the door to women of color because the system is premised on the ability to pay. A typical response within a highly commercialized and consumerized society is that the establishment will recognize certain demands, but only for those who are able or willing to pay. Coming at this from an economic justice lens, we see this as exclusionary, since many Black women and women of color do not have the means to “purchase” their preferred birthing process. This is where we return to what civil rights activist Ella Baker called “legalism”—the idea that laws alone will not build participatory democracy. She believed that change would not come only from individuals speaking to power in the language that power understands, and advocated for the mass mobilization of collective power. In the same way we see arguments for the legalization of midwifery, which stops short of calling for it to be accessible.

Rewire: What would you say are some of the most important messages in the book?

JCO: One of the messages I’d like to lift up is that this is an urgent movement about saving our lives. I consider birth justice part of the broader Black Lives Matter movement, especially the SayHerName campaign, which has really worked to center women’s voices and stories. In the same way, this book highlights how Black women are reclaiming birth as a powerful and beautiful experience, despite all the forces of birth oppression. Many stories in the anthology uphold moments of what I would call “autonomy,” where Black women and women of color have created completely separate spaces and moments of full empowerment. This is a message of hope in the now—we are not only struggling for a future birth experience but celebrating the birth revolutionaries who are decolonizing the birth experience in the present moment too.

AB: One thing I think the book highlights that is missing in conversations about reproductive justice is the shame associated with miscarriage. I think there has been a lot of internalization of the idea that women are machines who exist solely for the purpose of producing children—and when we are unable to do so it means we are defective in some way. It’s extremely important to interrupt this narrative with one that centers the autonomy of women and birthing parents, and fights the notion of miscarriage as something shameful. We have a chapter in the book by Viviane Saleh-Hanna, a professor at University of Massachusetts Dartmouth, “On Natural Birth and Miscarriage,” which really speaks to this important message.

And finally, one of the things that I find incredibly powerful about the anthology is that we historicize the cultural traditions of Granny Midwives, older Black women who have functioned within Black communities not only as birth caretakers but also health workers for the entire community. So we start there, and end the book by looking at ways in which activists are reclaiming these traditions, and reclaiming the birth space as something sacred, which I see as a really hopeful message.

This interview has been lightly edited for clarity.

Commentary Abortion

The Largely Forgotten History of Abortion Billboard Advertising—and What Pro-Choice Advocates Can Learn From It

Cynthia Greenlee

Ideological warfare about abortion via advertising has a long track record, though it’s a past largely forgotten in history’s fog and the present’s relentless attacks on abortion rights. Today’s reproductive rights and justice advocates can’t afford to forget that past.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Across the United States, billboards are visible evidence of the contentious abortion debate. Enlarged images of fetuses, cherubic babies, distressed women, and Bible verses tower over highways and byways like anti-abortion sentinels overseeing America’s culture wars.

Notice I didn’t mention images that show happy, pro-choice women, for it’s a lopsided roadside debate.

Rarely do we see billboards promoting abortion rights or the broader ideals of reproductive justice; there are few examples like New Voices Cleveland’s recent sponsorship of these billboards that affirmed, in the wake of the police killing of 12-year-old Tamir Rice in the city, that reproductive justice includes the right to parent and protect children. Abortion opponents have effectively cornered the market on this advertising medium and, to paraphrase a hackneyed phrase from “American Idol” judges, have made the billboard their own.

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But the good news: The billboard is just a tool (like video is a tool)—and tools can be harnessed for any movement. In fact, past abortion-rights advocates used billboards to good effect—even before Roe v. Wade. Ideological warfare about abortion via advertising has a long track record, though it’s a past largely forgotten in history’s fog and the present’s relentless attacks on abortion rights. Today’s reproductive rights and justice advocates can’t afford to forget that past. They may need to “go back to the future” to resurrect this tool in an era where women face increasing restrictions on abortion, and providers face proposed laws that would curtail their ability to offer reproductive health care to women most in need.

So what is it that advocates need to remember or learn? For starters, many early billboards functioned as straightforward advertising for abortion—even when it wasn’t widely legal. This roadside sign popped up in McGrann, Pennsylvania, in 1971 and pointed people to neighboring New York state, which had legalized abortion in 1970.

Abortion Billboard

Similar billboards featuring phone numbers began sprouting like giant flowers on the American landscape. As this picture demonstrates, referral services—some nonprofit and some that operated as for-profit entities—also took to streetsides before Roe to tell women that they could find health care in the form of abortion and sterilization.

Billboard on Abortion

Distributing information about abortion through billboards or other advertisements was not without risk; those who did so could face arrest. In 1972, Charlottesville, Virginia, newspaper editor Jeffrey Bigelow was charged with running advertisements for a New-York based abortion referral service and convicted under a state law banning any public promotion of abortion services. The case eventually made its way to the U.S. Supreme Court, but took a back seat to the bigger challenges to abortion bans: the cases that would become Roe and Georgia’s Doe v. BoltonBigelow v. Virginia was eventually decided in 1975; Bigelow’s conviction was overturned because there could be no limits on the advertising of a service that had become legal.

At the same time, the young anti-abortion movement was also rolling out its own billboards, said historian Jennifer Donnally, a Hollins University visiting professor who researches abortion politics and the new right. From the early days when anti-abortion advocates were organizing against state-level abortion law reform, they have made billboards a key part of their messaging.

“Anti-abortion billboards began to appear on highways in New York, Massachusetts, Michigan, and Washington [state] prior to the 1973 Roe v. Wade decision as part of statewide campaigns against abortion repeal efforts,” Donnally told Rewire.

Many of those billboards were tied to specific ballot measures or potential law changes. In 1970, when Washington state planned a referendum where voters could decide to allow abortion in some circumstances, opponents (and their billboards) came out in full force. “Kill Referendum 20, not me,” implored a billboard picturing a fake fetus cradled in an adult hand. Accused of using tasteless scare tactics, Voice of the Unborn (the group behind the billboards) replied through a representative, reported the New York Times in October of that year: “They show an exact medical school replica of a 4-month-old baby. If the billboards seem to be shocking, perhaps it’s the idea of abortion that’s shocking.” (The referendum passed with 56 percent of the vote, and allowed women and girls to have abortions if they requested them, with the consent of their husbands or guardians, and if the procedure was performed by a licensed physician.)

Donnally noted that anti-abortion billboards have taken different forms and served many purposes over time. They moved from makeshift messages in cornfields to slick public-relations creations, and they mobilized supporters in different ways according to the movement’s age and successes.

“The publicity billboards educated the public and recruited potential activists. Behind the scenes, efforts to place billboards trained anti-abortion activists in fundraising and media relations while also [making] activists feel effective when the movement was in its early stages, following setbacks or celebrating victories. Sometimes, billboard campaigns were sophisticated. Other times, a farmer in a rural area who had a hard time connecting to anti-abortion chapters concentrated in cities and towns took action into his or her own hands,” added Donnally. “They made a plywood anti-abortion sign and posted it on their land next to a heavily traveled highway.”

After the Bigelow ruling, anti-abortion advertising gained steam in the mid-1970s. A February 1976 Village Voice article called John C. Willke, then a practicing obstetrician and a future president of the National Right to Life Committee, the “visual aids guru of the pro-life movement.” Willke’s first visual aids were often slideshows that Willke and his wife presented in talks to high schoolers.

But, according to the article, Willke’s “newest project [was] the creation of the three billboard posters. The least offensive reads ‘Abortion: A woman’s right to choose.’” “Choose” was crossed out and replaced with “kill.” A second billboard depicted tiny feet and this text: “This baby won’t keep his mother awake at night … at least not yet.” Willke planned to erect a fetus billboard atop a building across from a Minnesota hospital that provided abortions, the article added.

Willke’s focus on the fetus and abortion’s supposedly negative and life-changing effects on the woman—now cornerstones of anti-abortion rhetoric—was an experimental and emergent strategy then. Emphasizing abortion as an emotional harm and women as its simultaneous victims and perpetrators, right-to-life groups were often explicit when telling their members how to best deploy billboards. An undated newsletter from the Jackson, Mississippi-based Christian Action Group provided hand-drawn illustrations of possible billboards, one showing “baby’s first visit to the doctor,” a menacing-looking physician holding a black sack and a frazzled woman hovering in the background. Also included was a sample billboard that showed a hand wielding a scalpel, labeled “a pro-choice pacifier.”

Christian Action Group

 

"Pro-Choice Pacifier"

The illustrations came with this advice on using billboards to the best advantage: “One form of ‘advocacy advertising,’ such as political advertising, is to convince people of the justification of your point of view. Another is to make people ashamed to be with your [opponents]. These billboards are the latter.” Cultivating and multiplying shame was a tactic. As abortion opponents’ philosophy went, Americans—even the most well-intentioned or those ignorant of the “real” story about abortion—needed to be confronted visually with their silent complicity.

When Roe came under significant legal challenge in the 1980s, billboards became even more overtly political. In 1988, the year before the U.S. Supreme Court decision Webster v. Reproductive Health Services that allowed states to restrict abortion, a Planned Parenthood billboard showed six male (and mostly anti-abortion) Supreme Court justices holding their own sign saying “Freedom of Choice,” but with Chief Justice William Rehnquist slamming his gavel on the word “of” and Justices Harry Blackmun and Clarence Thomas holding a replacement sign with the word “from.” Also in 1988, anti-abortion activists experimented with a new form of advertising by placing anti-abortion placards in Atlanta taxis during the Democratic National Convention there.

A year later, in 1989, Prolife Across America was up and running. It works as an anti-abortion billboard mill, cranking out design after design (as well as radio spots and other advertising).

Therein lies the difference: Billboards have been institutionalized in anti-abortion media strategy and organizations, but they seemed to fade from the strategic agendas of reproductive rights organizations. In 2014, the Prolife Across America/Prolife Minnesota tax return reported that its designs were emblazoned on more than 6,000 billboards, reaching Americans stuck in traffic or driving to work every day with its larger-than-life messages. The group often says those messages are hotlines for pregnant women, educational, and roadside ministry all wrapped into one. Other organizations provide templates or the actual printed vinyl panels that bear the messages and drape over the standard billboard frames for prices as cheap as $200 (not including the cost of billboard rental, which varies widely according to geography, company, and the estimated number of motorists and views at given locations).

As the billboard has become a consistent anti-abortion platform, the messages billboards have carried read like a conversation between abortion opponents and other social movements. Billboard makers have blatantly adapted the slogans of feminism and civil rights and even the images of Black political leaders such as Frederick Douglass or Barack Obama—and with varying degrees of deftness or tone-deafness.

By the 1990s, billboards in the Midwest had reworked a common feminist bumper sticker to read “Pro-life: The radical idea that fetuses are people.” Later, billboards took an explicitly racial turn. In 2011, billboards proclaiming “Black & Beautiful” alongside pictures of Black infants appeared in Oakland, California. Sponsored by the anti-abortion group Issues4Life, the billboards appropriated the language of the Black Panther movement, which had its most well-known and vocal chapter in the Bay Area city.

Images and messages on billboards that explicitly targeted Black communities—and paved the way for others aimed at Latinos and Asians—were not entirely new. As scholar Gillian Frank has pointed out, a 1972 Michigan referendum about changing that state’s abortion law pushed anti-abortion groups to begin developing brochures that pictured Black babies and compared abortion to slavery, now old-hat anti-abortion fare.

More than 20 years later, diverse groups protested the encroachment of racist billboards in their home communities. In Oakland in 2011, Strong Families and a coalition of multiracial groups joined forces to persuade CBS Outdoor to take down controversial signage—a campaign similar to one used a year before by the Atlanta-based SisterSong Women of Color Reproductive Justice Collective when billboards also owned by CBS and claiming that “black children are an endangered species” appeared in the Georgia capital. Earlier this year, the reproductive justice group SisterReach successfully pushed for the removal of anti-abortion billboards in Tennessee.

Yet the hand that giveth does taketh away. Contemporary groups fighting for abortion access find that many billboard and other advertising companies reserve the right to deny or take down controversial content. And those contractual stipulations mean that some companies will reject outright advertising that specifically references abortion or simply points women to services—for fear that the other side will cause a ruckus and demand its removal. Fears of the “A-word” have made it into the online world, with Google determining that abortion ads were “non-family-safe” content and categorizing them with adult advertising and entertainment.

Whatever the advertising format, it’s clear that this type of commercial and political speech isn’t going away. And few people know that better than Jasmine Burnett, New Voices Cleveland’s field organizer in the Midwest. In 2010, she led the campaign to take down a SoHo, New York, billboard that proclaimed the most dangerous place for a Black person was the womb, and this year, Burnett was a driving force behind the Cleveland billboard.

Cleveland Billboard

Burnett said that it’s not enough to mount defensive campaigns that respond to the propagandistic billboards that increasingly dot urban and mostly Black neighborhoods. What’s necessary is billboard activism that moves beyond reproductive rights’ preoccupation with abortion and, in keeping with a reproductive justice lens, addresses the racism that’s an American bedrock.

“Anti-abortion billboards are an affront and an attack. [In doing the billboards, New Voices Cleveland] wanted to provide other spaces for creative thought, affirmation, and liberation,” said Burnett. “We work for the full health and well-being of Black women and people. For us, full health means having a different image of ourselves, being able to control and discuss our reproduction, and thinking about how we navigate self-determination in the midst of white supremacy.

“There are not many [billboards or other advertising] that talk about Black people’s lives,” Burnett added. “And we wanted our billboards to say, ‘We support your decision and right to parent or not parent. And we care about your life.’”

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