Wombs' silence: Infringement on women's rights with intellectual disabilities

Menstruation is a rite of passage for every young girl into womanhood; an event that is usually celebrated or causes cheek-reddening. Yet, this joyful occasion can be a most traumatizing one for intellectually disabled women as they try to navigate a situation they can barely comprehend, or one they never get to experience because they were subjected to the surgical removal of their uteri in a procedure known as a hysterectomy.

This invasive surgery, rarely a medical necessity, is a decision often made by the parents, according to Awatef Abu-Alrob, Founder of Al-Yasmeen Association for Children with Down syndrome. “Parents have firm convictions that such surgery is in the child's best interests and that they are doing nothing wrong.”

After extensive attempts to try to speak to families of women who underwent the surgery, our attempts were met with a resounding/deafening silence. “The subject is sensitive and even though the surgery has already been performed in most cases, they do not want to publicize the news. Even within the association, we talk to families in closed groups, we invite them via WhatsApp groups, and we do not announce the gatherings publicly. The cases are hidden, the stories untold and consequently, evidence is sparse with an absence of official disaggregated data,” said Abu-Alrob.

This radar silence was also confirmed by Asya Yaghi, President of ‘I am Human’ Society for the Rights of Persons with Disabilities. She said: “No matter how hard we try, we cannot break into the silence of the families. There is a strong societal stigma that stands between us.”

What could convince parents of adopting a measure so extreme?

Both experts cited hygiene concerns during menstruation and the financial strain from long-term support, emotional and physical fatigue of the caregiving responsibilities, as the pretext driving parents to make such decisions. A more pressing reason, from the parents’ perspective, is their daughters’ vulnerability to potential sexual abuse, especially if they ended up in care facilities after the parents’ death where a stranger would be taking care of them.

Furthermore, mothers in particular wish to spare their daughters the discomfort that comes each month with Premenstrual Syndrome (PMS) and periods including mood swings, pain and cramps. “Some families believe that since their daughter will not get married, there is no point in her keeping her uterus. In other situations, certain parties considered it as a measure to curb the reproduction of ‘less than’ normal human beings,” said Yaghi.

Whether hysterectomies are performed for the women’s best interests or the convenience of others, they pose a concern regarding how our culture views women and persons with disabilities, or both of them.

Intersectionality: Gender & Disability

Women with intellectual disability experience double discrimination. Hysterectomy is where discrimination based on gender intersects with discrimination based on disability resulting in an open infringement on their right to procreate. The United Nations Convention on the Rights of Persons with Disability stipulates that they have a right to maintain their fertility on an equal basis with others.

This irrevocable procedure is viewed as degrading and dehumanizing by several activists since it violates women's bodily autonomy, regardless of how dependent, and consent over their sexual and reproductive health.

Hysterectomy Prohibition & Criminalization

Such a controversial procedure and an ethical decision of this complexity must be governed by a clear framework. Collective efforts from the Higher Council for the Rights of Persons with Disabilities resulted in the adoption of several legal mitigations and the eventual prohibition of hysterectomies in Jordan.

In 2014, Islamic fatwa No 194/2014 was issued from the General Iftaa’ Department, prohibiting the surgery, considering it a clear violation of Islamic Sharia if operated for a non-medical reason and mandating that it is the society’s and family’s responsibility to accommodate women with disabilities, not the opposite.

“Article (2) of the Rights of Persons with Disabilities Act, Law No. (20) for the Year 2017, explicitly and amply defines Free and Informed Consent as the agreement or acceptance of a person with a disability or his/her legal designate toward every action, procedure, or legal measure to be taken regarding their rights or freedoms after being notified, in a way that he or she understands the content, results, and impacts thereof; and it is a very important concept in the context of discussing hysterectomies, ” said Lara Yassin, is the Director of the Legal Affairs Department in the Higher Council for the Rights of Persons with Disabilities.

One could argue that if a girl or woman has an intellectual disability, and therefore she lacks legal capacity and is under guardianship, then consequently, is she capable of giving true consent. “You do not actually obtain the woman’s consent. You do obtain the consent of the family who are her guardians. Yet, if the family is the one who wants to perform the surgery, whose best interest does this consent reflect?” Abu-Alrob interjected.

Nonetheless, “Article 14 of the Medical and Health Responsibility Law mandates that in addition to obtaining consent, the opinion of a specialized committee consisting of at least three doctors with specialization in the field is required. Their medical reports must state that the procedure is a medical therapeutic or preventive necessity with no alternative medical therapeutic intervention available.” Yassin elaborated.

“Hysterectomies for women with intellectual disabilities is an act of violence according to Article 30 of the Rights of Persons with Disabilities Act, Law No. (20) for the Year 2017,” explained Yassin.

We asked Abu-Alrob and Yaghi on their opinion if the cases decreased following the adoption of the law on which Yaghi answered “We are almost certain that the cases have not decreased, but we do not have evidence amidst the continuous silence from families and the medical community’s closing of the ranks. We had several anonymous calls claiming that some hospitals continued performing hysterectomies while writing them as minor procedures on the official medical records, bringing us back to square zero.”

Abu-Alrob’s opinion was that it has become more difficult for the General Iftaa’ Department to issue a Fatwa unless the medical reports explicitly state that the uterus poses a life-threatening harm. “It does not mean that the newly instigated hurdles actually stopped some families - as they were unbelievably desperate and determined; some travel to Turkey and some try to seek sympathy from doctors in order to obtain the required medical reports for legal justifications.”

A heavy price to pay

Although hysterectomies are pictured as a perfect solution to a difficult question, the surgery, and its aftermath ushers in new difficult realities. Over a decade go, Jordan had a very publicized incident in a poor neighborhood where a girl with Down syndrome had been repeatedly raped by her drug-addict uncle. Then he started escorting her to an abandoned house where drug dealers would rape her in return for drugs.

Yaghi believes that the surgery is counterproductive as it might perpetuate the likelihood of rape and presents a carte balance for rapists to walk free, shield them from punishments and allowing them room to repeat their crimes with the fear of the possibility of pregnancy is eliminated. "Infection with AIDS and other sexually transmitted diseases is another risk associated with rape.”

These counterproductiveconsequences, which might lead to Hysterectomy for women and girls with intellectual disabilitie sas a means of protecting them from any sexual abuse, can be avoided with the implementation of preventative measures such as: providing comprehensive sexuality education tailored to their cognitive abilities, teaching them about personal boundaries, appropriate and inappropriate touch, and how to recognize and report abuse, as well as, raising awareness among caregivers, family members, and staff about the vulnerability of individuals with intellectual disabilities to sexual abuse, and monitoring and supervising interactions between women and girls with intellectual disabilities and caregivers or service providers.

Similar to any other surgery, there is a chance of confirmed side effects post-surgery: whether psychological including pain, trauma and depression, or physical such as osteoporosis, heart diseases and early menopause symptoms ranging from hot flushes, sweating to disturbed sleep and insomnia.

Is it the only way out?

“No,” said Abu-Alrob. Wanting to give her Down syndrome-diagnosed kid the best care possible, she began looking into alternative approaches and interventions.

“There is a common misconception that girls with intellectual disabilities are incapable of learning about menstruation and personal hygiene. Early intervention remains an untapped resource in our society; I watched a British video produced in 1961, showing how a 6-year-old girl with intellectual disabilities was taught to use sanitary pads in anticipation of her first menstrual cycle (in most cases, their menarcheal age start as early as at 9).”

“Then I started training my daughter on hygiene and using ‘Everyday Pads’; my daughter, a second grader, wears the pad to school and packs an additional one in a black plastic bag. Like any skill development and learning process, it is manageable by establishing regular, structured routines and then watch them thrive.”

Abu-Alrob and Yaghi have been helping other families in adapting and learning about other available options, the associated risks in performing hysterectomies and how to shed society’s stereotypes and expectations through their respective associations.

Other mitigations, like increased government budgetary allocations, more easily accessible facilities, medical care, mental health, and psychosocial support services, as well as robust safeguards against sexual abuse, raising awareness, and providing training for caregivers, would give families better reasons to give their daughters the benefit of the doubt rather than more pretexts to subject them to hysterectomies.

By: Roa’a Abu Nada