U.S. Doc's Specialty Is Women with Cut Genitals

BOSTON (WOMENSENEWS)–Mona was just 7 years old when her female relatives led her away and performed her genital mutilation. In her village in Somalia, women underwent the most radical form of genital cutting, leaving no trace of the clitoris and little remnants of the labia.

"It was very painful," Mona recalled, rocking gently as she nursed the youngest of four children. "I had no choice. My aunts, my mother, my grandmothers–they didn’t see it as aproblem. They saw it as something we just did."

When she came to the United States three years ago, Mona (who did not want her last name used) said medical care was a problem because of her genital cutting. Some doctors were appalled when they examined her, said Mona, 32. Others were curious, treating her like a laboratory specimen; even summoning nurses and other physicians so they could see what genital mutilation looked like outside a textbook. And no one seemed to know what to do about recurring problems, such as infections, that are common among whose genitalia have been cut.

The same set of concerns prompted Dr. Nawal Nour to start, in 1999, the African Women’s Health Center at Brigham and Women’s Hospital here–this country’s only clinic for women who have undergone cutting. Without what she called "culturally competent care," Nour feared cut women in this country would avoid medical treatment altogether.

"Access to health care is about feeling comfortable with your health care provider," explained the 38-year-old Sudanese-American physician. "If a woman comes in with a headache and turns into a guinea pig, we have completely blocked her access to health care."

Dedicated to Eliminating FGM

Although the procedure has been illegal in the United States since 1997–when then-Rep. Patricia Schroeder sponsored a bill to outlaw female genital mutilation –Nour said about 170,000 girls and women in this country have undergone genital cutting or are at risk of it. About 140 million girls and women worldwide either have been genitally cut or will have it done, Nour said, citing figures from the World Health Organization.

Nour was still a medical resident when she began to attract a following among African women in New England. Word about a female, Arabic-speaking doctor circulated in the area’s burgeoning immigrant community. In turn, Nour began working with organizations that aided African immigrants in Boston.

Her "little niche," as she called the specialty practice she developed, exploded from a handful of patients five years ago to close to 1,000 today. Armed with a master’s in public health to go with her bachelor’s degree from Brown University and her medical diploma from Harvard, she also did research in minority health policy, asking African female immigrants directly about their health care needs.

Not only did the women say they wanted a clinic, but they told Nour they wanted it at Brigham and Women’s Hospital, "because that is where the rich women went," Nour said. Nour also set up seminars to educate doctors around the country about treating genitally cut women.

Last year, Nour won a MacArthur "genius" award in recognition of her work with survivors of female genital mutilation. She makes no secret of her opposition to the practice.

"I am dedicated to eliminating female genital mutilation," she said.

Right of Passage

Nour grew up in the Sudan, the daughter of two professors. She remembers genital mutilation as "something that happened to the girls I knew in Khartoum." Starting in elementary school, her friends would casually report: "Oh, I got circumcised. Did you?"

Nour’s parents opposed the practice. But genital cutting was so common for girls that Nour recalls her 8-year-old sister asking their father, "When is my circumcision?" When he told her she would not have one, her sister cried, Nour said.

"It was something she looked forward to, like a rite of passage," she said. "For me it was a mystery. I wondered why we could do this practice in a country that I loved so much."

No one knows when or where female genital cutting originated, Nour said. No religious doctrine ordains it and the extent to which it is practiced varies from region to region in Africa, she said.

It continues because so many cultures believe their daughters will not get married if they are not cut, Nour said.

"They think that if you want to hold on to her chastity, you circumcise her," she said. "It is done out of love."

Hidden Practice

The mythology around female genital cutting also serves to perpetuate the practice, Nour said. Some groups in Africa believe, for instance, that if a baby’s head touches a mother’s clitoris, the baby will die, she said. Others say that if the clitoris is not removed, it will continue to grow until it touches the ground.

"To women who have been circumcised, it may be seen as beautiful," she continued. "And if you talk to the majority of women who have been circumcised, they are leading healthy and productive lives, just as their mothers did. They do not want to be seen as victims–and they are not victims. They are very healthy, happy human beings. And they look just like every other woman they know."

Yet the procedure carries risks. Women can bleed to death. They can experience menstrual problems such as heavy monthly flows. Infection is common. Sterility also can result. Sexual pleasure also is compromised.

Nour is convinced that one reason genital cutting continues is that it is so hidden. She thinks attention and education could reduce the practice, and possibly bring it to a halt.

"If you think of how foot-binding ended, it basically stopped overnight," she said. "I think the same could happen here."

Nothing would make her happier, she said, than for her medical specialty to become obsolete: "That is my goal."

Mona, her Somali patient, pledged to help Nour attain that goal.

"I will never do this to my own daughters," Mona said.

Elizabeth Mehren, a writer based in Boston, is the New England bureau chief for the Los Angeles Times.