By Liriel Higa
May 22, 2015
When Jaha Dukureh created a Change.org petition to tackle female genital mutilation, or “female circumcision,” in the United States last year, her goal was modest: 1,000 supporters.
Dukureh, then 24, who herself underwent genital cutting as a girl in Gambia and now lives in Atlanta, wanted an updated federal estimate of the women who have had the procedure or are at risk of it. The number was last estimated by the Centers for Disease Control and Prevention in 1997, when 168,000 women and girls were said to have had the operation, or been at risk, in the United States. Dukureh hoped her petition would get a modest number of supporters to back the call for gathering data, as a step toward addressing the issue.
“1000!!!!!!,” she wrote in an update on March 7 about her petition signatures. Nine days later, she topped the 1,500 mark. With a push from The Guardian, and tweets of support from celebrities including Paula Abdul and Susan Sarandon, the numbers took off, reaching 220,000 signatures by July. Most significantly, the administration agreed to study the number of women affected and create a working group to come up with a plan to tackle it.
The CDC hasn’t released a final estimate, but a draft obtained by The Guardian estimates 513,000 women and girls are living with or a risk of female genital mutilation, or “female circumcision,” as it is sometimes referred to euphemistically. Illegal to perform on minors in the United States since 1996, it has no health benefit and typically involves removing part or all of the genitals of babies or young girls, though in some cases it can be a nick. Under one extreme form, the vulva is sewn up afterward, leaving just a small opening for menstruation and urination. The result can lead to great pain and health complications, particularly in childbirth. Parents have their daughters undergo the procedure because they view it as a rite of passage that will improve marriage prospects; there is often an assumption that a girl with a clitoris is likely to be “wild.”
The Population Reference Bureau used methods similar to those the CDC employed, and in its own study concluded that 507,000 women are at risk and affected in the United States. The numbers are calculated based on the number of women coming from countries with high prevalence rates of female genital mutilation, or daughters with parents from those countries. In fact, says Mark Mather of the Population Reference Bureau, compared to the 1997 estimate, which included people with ancestry from an affected country, the latest figure is more conservative because it is limited to the first and second generation.
Yet the women who come to the United States aren’t necessarily representative of other countries’ population as a whole, and when it comes to a precise count of how many women have actually undergone the procedure, that’s much harder to calculate. The practice isn’t uniform within a country — it can vary by region, religion and wealth, for example, a level of nuance that is difficult to extrapolate when it comes to the U.S. population. In Benin, 72 percent of Peulh girls have undergone the procedure, while it is not practiced among the Adja and Fon ethnicities. In Gambia, 82 percent of girls and women who have been cut think the practice should continue, compared to only 5 percent of those who have not been cut. Low-income Liberian women are twice as likely to have been cut as wealthy ones.
Within the United States, the immigrant groups also tend to be clustered — with 40 percent living in five metropolitan areas: New York, Washington, D.C., Minneapolis-St. Paul, Los Angeles and Seattle.
Immigrants to the United States are often better educated and wealthier (with refugees a notable exception). In fact, calculating the number of just women who have been cut, says Mather, is “flat out impossible to do with the data we have. There are no national surveys…. All the data we have are hospital, clinical data, anecdotal evidence.”
Brendan Wynne of Equality Now, which has been lobbying for years to address female genital mutilation in England and the United States, says that it’s a mistake to assume that just because immigrants to the United States may be more affluent and educated, that means they are less likely to have been cut. “There’s no real connection in that sense, he says. “The last places for FGM to exist will be in the Western world. Diaspora communities tend to hold onto it.”
The United States isn’t the only country with outdated numbers. UNICEF counts 29 countries in Africa and the Middle East where the practice is most prevalent, and estimates more than 130 million women and girls in those countries have been cut. The greatest numbers are in Egypt (27.2 million), Ethiopia (23.8 million) and Nigeria (19.9 million), while the highest rates are Somalia (98 percent), Guinea (96 percent), Djibouti (93 percent) and Egypt (91 percent). Yet Somalia’s data is from 2006, Ethiopia’s from 2000 and 2005, and Yemen’s from 1997. (It is also believed to persist among Muslims in Indonesia, which is the world’s largest Muslim country.)
So how can the United States get more precise numbers? The United Kingdom — where some 137,000 women are said to be affected — offers one model. There, health professionals in the national health care system must make note in a patient’s health care record if she has been cut. The Department of Health also collects data every month from acute trusts, which manage hospitals, on how many patients have undergone the procedure.
But collecting such information in the United States is challenging. Charlotte Feldman-Jacobs of the Population Reference Bureau says that there are privacy and legal issues. “Are you going to ask someone who lives in a country where FGM has been outlawed: ‘Have you cut your daughter?’ ”
And there’s a reluctance by women who have undergone it to talk about it — even among themselves. “Women don’t want to talk about it because every time, you revisit that awful day,” says F.A. Cole, who grew up in Sierra Leone and lives in Germantown, Md., and is launching a magazine for fellow survivors.
Still, more research, even if it’s qualitative, would be helpful. And there are issues in the United States that don’t apply to countries where it is prevalent. For example, how prevalent is “vacation cutting” — when girls are brought back to home countries to be cut? And what about the rumors that there are cutters brought into the United States to do the procedure?
Dr. Nawal Nour, founder of the African Women’s Health Center and associate professor at Harvard Medical School, cautions against putting the onus on just health care professionals for reporting vacation cutting. “As a health provider who has been working hard to maintain access to care for this population, I believe strongly that it would be difficult to make the health system primarily responsible,” she writes.
Getting better data will require improved record keeping and coding by healthcare professionals, better surveys, and “sensitive evaluation of changes in attitudes that influence this population,” says Nour.
And by providing a more accurate estimate of how many women have undergone cutting, instead of just being at risk, that could persuade the public and legislators about the need to better train those who come in direct contact with girls at risk, as well as provide appropriate emotional and psychological support for those already affected.
Numbers aside, Dukureh’s Change.org petition has helped to create momentum in important ways: More people in the United States are aware that cutting is not just a practice that affects women overseas, which could provide meaningful public support for legislative and policy change. In February, Rep. Joe Crowley and Rep. Sheila Jackson-Lee introduced legislation to establish a multi-agency strategy to tackle the practice, which could include an emergency hotline for girls seeking help. That would add the United States to the group of countries that have a national strategy, like England and Italy.
Dukureh says that when she started her campaign, “I would have never imagined in a million years that it would be this successful.” But the past year has given her hope — and the drive to continue. Citing the success of ending foot binding in China a century ago, Dukureh says, “I feel like we can really end FGM in our generation.”