Translated by  Kobe Spells

 The menstrual cycle is considered an important stage in every woman’s life and, what’s more, a right of passage for every girl to womanhood. Responses to the menstrual cycle differ from one person or society to another, as some celebrate it whereas for other, more traditional societies it is a source of embarrassment.

 However, this joyful occasion shocks women with mental disabilities, as navigating such a situation is considered to be beyond their understanding and control. Perhaps, in more difficult situations, they may not experience this part of their womanhood due to their having previously undergone a hysterectomy. 

The decision to undergo this surgery–which is rarely due to medical necessity–is typically treated as the right of the family. According to Awatef Abu ar-Rab, founder of the Al-Yasmeen Association for Children With Down Syndrome: “parents are deeply convinced that this type of surgery is in the best interests of the child and that they are not committing any mistake whatsoever.

All of our requests to speak to the families of women who underwent the surgery were met with resounding silence. Abu ar-Rab explained that this subject is extremely sensitive and–despite the surgery having been effective in most cases–denial and secrecy persist. Even at the association, we speak to families in private groups and communicate with them over WhatsApp groups whose existence is not publicized. Thus, cases are hidden, stories remain untold, and evidence is limited due to the lack of detailed statistics.

As Asia Yaghi, director of the I am a Human Society for Rights of Disabled People, stated: “no matter how hard we try, we cannot break the silence of the families. There is a powerful social stigma standing in our way.”

What Could Motivate Families to Take Surgical Measures So Extreme As These?

Two experts shared concerns related to feminine hygiene during the menstrual cycle and financial pressure associated with long-term support, in addition to physical and emotional exhaustion due to caregiving responsibilities. These factors form the pretense under which parents make such decisions. And from the parents’ perspective, there is a more pressing reason: the potential for their daughters to face sexual assault, especially if they end up losing one of their caregivers due to the death of a parent, leaving a stranger to take care of them and leaving them more vulnerable to assault. In addition, some families believe that if their child is not married immediately following the onset of their menstrual cycle, the uterus ceases to have any purpose. Still, in other cases, parents believe that the procedure is a preventive measure which limits the increase in such disabilities. 

Conversely, many mothers hope to spare their daughters from the frustration that accompanies PMS, which causes mood swings and painful cramps. Yet, setting aside whether the surgery was undertaken for the benefit of the disabled woman in question or for the convenience of others, it constitutes a truly concerning issue regarding our society’s view towards women and/or people with disabilities.

Intersectionality: Examining the Relationship Between Gender and Disability

Women with disabilities face a two-fold discrimination. The hysterectomy is at the intersection of discrimination on the bases of gender and disability, and this intersectionality leads to the outright violation of their reproductive rights. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) dictates that disabled individuals have an equal right to preserve their fertility as others. 

Likewise, this irreversible procedure is seen by many activists as offensive and inhumane because it violates the bodily autonomy of the woman, regardless of the extent to which her sexual and reproductive health is reliant upon others. 

Between Taboo and Criminalization

Such a complex moral decision must be judged within a clear legal framework. Further, collective efforts by the The Higher Council for the Rights of Persons with Disabilities (HCD) have resulted in the adoption of several legal measures limiting the practice in Jordan. In 2014, the General Fatwa Office published Fatwa 194/2014 which forbade the procedure, calling it a violation of  Islamic jurisprudence when undertaken for non-medical purposes and indicating that the responsibility of the family and society must include the needs of disabled women and not the other way around.

Lara Yaseen, director of HCD, speaking on the concept of free and informed consent, stated: “Article 2 of the Law on the Rights of Persons with Disabilities defines–at length and with utmost clarity–the concept of free and informed consent as follows: that the disabled individuals or their legal representative agreed to every act of behavior or legal procedure taken in relation to any of their rights or freedoms after being informed–in a manner comprehensible to them–of the content, consequences, and implications of the procedure. This concept is critical in the context of discussing these procedures.”

Nonetheless, an argument can be made about mentally disabled women lacking mental competence and being under the guardianship of another, and thus being incapable of giving informed consent. Conversely Abu ar-Rab, says “You are not getting the consent of the woman. You are getting the consent of her family members in their capacity as her custodians. Thus, if the family is the party that wants the procedure, who is it effectively serving?”

Yaseen clarified, saying: “Article 14 of the Medical and Health Liability Law dictates that, in addition to receiving consent, a specialized council consisting of no fewer than three physicians must be consulted, and must produce a medical report indicating that the procedure is a treatment necessity or medically preventative with the lack of alternative medical intervention.” She added that hysterectomy performed on mentally-disabled women is considered an act of violence according to Article 30 of the 2017  Law on the Rights of Persons with Disabilities (#20). 

We asked Abu ar-Rab and Yaghi for their opinion on the decrease in cases following the legal amendments. Yaghi responded that “we are nearly certain that the cases did not decline, but we do not have evidence amid the continued silence of families and the concealment of their files by the medical community. Some anonymous calls have claimed that hospitals continue to perform hysterectomies, recording them as surgical interventions or procedures in formal medical records, returning us to square one. 

 As we were informed by Abu ar-Rab, it has become rare for the General Fatwa Office to publish fatwas barring greater honesty from medical reports about the life-threatening nature of the procedure, but this does not mean that the full range of consequences has disappeared. Some families had resorted to appealing to doctors to produce the requisite medical reports that would provide legal justifications or facilitate travel to Turkey for treatment abroad.”

A High cost 

Despite the portrayal of hysterectomies as an ideal solution to a difficult situation, the surgery leads to unforeseen consequences. Nearly a decade ago, in an episode that shook the streets of Jordan, a girl with Down Syndrome was repeatedly raped by her uncle who was a drug-addict, in addition to being escorted by her uncle to an abandoned house where she was raped by drug dealers in exchange for drugs, not to mention the possibility of more painful incidents. 

Yaghi believes it is clear that the operation has negative side effects as it increases the probability of sexual assault and encourages the assaulter to do what they please without hesitation or fear of consequences, leaving them free to repeat their crimes by taking pregnancy out of the equation. And we need not forget AIDs and other sexually-transmitted diseases.

As is the case with any other surgery, even if it performed under normal conditions, the side effects of hysterectomy cannot be ignored–whether psychological (i.e. trauma or depression) or physical (i.e. bone fragility, heart disease, or early menopause which ranges from hot flashes and sweating to troubled sleep or insomnia).

A Reasonable Answer to a Difficult Question… Is Hysterectomy the Only Answer?

“No”– This is the response of Abu ar-Rab, who researches alternative methods in pursuit of the best possible care for her daughter who has Down Syndrome. There is a common misconception that children with mental disabilities are incapable of learning about the menstrual cycle and personal hygiene. Early intervention continues to provide an underutilized solution in our society: through my research I came across a British video clip from 1961, which shows how to teach a 6-year old girl with a mental disability how to use sanitary pads in the event of her first menstrual cycle. In most cases, the onset of puberty amongst mentally-disabled girls is early, and could take place around the age 9.

I began training my daughter on personal hygiene and using daily pads. My daughter, who is in the 8th grade, wears pads to school and packs an extra one in a black plastic bag. They are capable of managing the task because they are creatures of habit, and can develop this skill like any other.

Abu ar-Rab and Yaghi help other families to adjust to and familiarize themselves with the other options out there, the risks associated with hysterectomies, and how to get rid of the societal stereotypes with the assistance of organizations which are dedicated to addressing them. 

There are other measures for mitigation such as increased government allotment, accommodations to help those in need take advantage of allotted resources, medical care, and mental and social support.  In addition, the government could provide firm guarantees against sexual assault, increase awareness, and train caregivers, which in turn gives families hope for providing their daughters with the ability to acclimate and exercise discretion in distinguishing between right and wrong rather than being subjected to hysterectomy.