AMMAN, Jordan — Though they’ve been close allies for sometime now, Jordan and the United States have an unlikely common ground. Groups in both nations are working to stop the sterilization of intellectually disabled women.
Around the world, families are having doctors remove the uteri of their mentally disabled daughters. While there have been a handful of widely publicized cases in places as far-flung as the United Kingdom, Jordan, India, and the U.S., for the most part the procedures are performed without discussion, even among disabled rights groups.
In Jordan, part of a region where the role of women is undergoing a constant evolution, the issue has recently entered the public sphere, sparking a debate that has raised concerns about both the treatment of women and mentally disabled people. While doctors in support of the practice insist that it improves the quality of life for both the affected women and their families, opponents say it is a form of violence against women and a base violation of human rights.
“This is a humiliation to human rights. We don’t have the right to decide for these girls,” said Manal Tahtamouni, a Jordanian gynecologist who has campaigned against the practice. At a workshop to warn families about the dangers of the procedure, Tahtamouni said that many families reported that “their care providers advised them to do this [surgery on their mentally handicapped daughters], so our main concern is that it will be a common practice in the future.”
Throughout the world it’s difficult to determine exactly how prevalent the procedure has become, says Curt Decker, executive director of the National Disability Rights Network (NDRN) in Washington, D.C. Online, however, NDRN has found thousands of parents inquiring on internet message boards about how they can perform such a procedure on their child.
Two years ago Decker’s organization sparked an active public awareness campaign in Washington state after doctors removed a developmentally disabled girl’s uterus and breast buds and gave her hormone therapy to limit her growth. Decker and others at NDRN only learned about the surgery after two years after it had been performed when an endocrinologist published an article about it in a medical journal suggesting that it might be appropriate to perform on other individuals.
“If this is happening in a country that has some fairly strong civil rights protections for people with disabilities, I don’t think it’s much of a leap to think that in countries where female castration and all that is happening, why wouldn’t we think that this isn’t something that is a fairly normal occurrence?” asked Decker. “I’m sure this is something that doesn’t make it into the light of day very often.”
In the U.S., there is a patchwork of legislation regarding the procedure that differs state-by-state and in most places it is not illegal. Even in places where there might be strict regulations, Decker said that the surgery can easily be performed outside hospitals in medical suites that skirt the sort of strict oversight found in larger medical facilities.
In Jordan existing regulations technically prohibit the procedure, but leave wide loopholes that give doctors enough leeway to perform the operation. While specialists like Tahtamouni stress that this procedure is only being performed on a handful of women each year, she said the health risks and human rights implications make it a practice that must be immediately stopped and forbidden by law.
Those who support the surgery argue that for severely disabled women, the procedure provides a way for them to improve their personal hygiene by eliminating their period. Isam Shraideh, a Jordanian gynecologist who supports the procedure for severely disabled women, says that menstruation can often prove difficult for mentally disabled women to understand.
Additionally, in large Arab families people often struggle to provide enough care to properly help these girls through their periods.
“You have to take into consideration our traditions in the Arab world. The females, they might expose themselves during their period. It would be disgusting for other members in the family,” Shraideh said. “The uterus is not needed because these girls are mentally [disabled], and, as we consider them, they should not marry. So why keep the uterus?”
Still, many activists charge that in the Arab world the practice mainly revolves around the concern that a disabled woman could leave the house unattended, get raped and become pregnant. This is also a concern for families in the U.S. In Jordan, rape of disabled women is extremely rare, but the concern still looms large for many families in a country where such an incident could lead to an honor killing, said Asma Khader, secretary general of the Jordanian National Commission for Women.
Families “thought that this is a way to prevent these types of sexual crimes,” said Khader. “But the fact is that rape can still happen, and [this procedure] can only prevent pregnancy. ... It is a practice that will make sexual crimes even easier.”
Before Shraideh or his colleagues perform a hysterectomy on a mentally handicapped woman, he said they perform a rigorous evaluation of the patient, which includes physical and psychological tests, to ensure that her condition is severe enough to merit the surgery. Shraideh, who usually deals with two to three such cases a year, said he has never performed the operation for a family who later regretted it.
“It is really humane to give them a hysterectomy in order to keep their dignity in tact,” said Shraideh.
Still, doctors like Tahtamouni who oppose to the surgery say that with time these disabled women can be taught how to deal with their periods and families should be more concerned about protecting their daughters from sexual assault, rather than just preventing pregnancy.
A recent campaign by the Higher Council for the Affairs of Persons with Disabilities sought to educate families with potential candidates for the surgery about the risks of the procedure.
While there was no one case in particular that spurred the council to action, the group’s representative, Lara Yassen, said the group grew concerned when it heard about several families deciding to carry out the procedure. Many of the families who attended the workshop did not realize a hysterectomy is an invasive surgery that can lead to major complications.
“We told families that it’s not permitted in any way by Shariah law [Islamic law] or from a human rights perspective,” said Yassen, who added that the practice is also widely condemned by Christian scholars.