Salwa, 45, finished work and rushed out to catch her bus home, returning to her 15-year-old daughter. Her daughter, Farah Mohammed Ibrahim, suffers from an intellectual disability that prevents her from being self-reliant. Nonetheless, Salwa is forced to leave her alone each morning and go to her job at a public authority. She opened the door of her apartment and called out for Farah, but the girl did not respond. Terrified, Salwa ran out of the house looking for her daughter. She sat on the doorstep of the house crying, nightmarish images wreaking havoc in her mind, she recalls. Her biggest fear was that her little daughter would be kidnapped or assaulted. Her fears were rapidly assuaged after hearing Farah's voice call her. She had been sleeping in her room. Salwa, embracing her, breathed a sigh of relief. But these moments of terror prompted her to take a desperate decision regarding her daughter. Salwa, whose husband died six years ago, decided to have her daughter undergo a hysterectomy (surgical removal of the uterus), justifying the decision as a precaution to protect her daughter from the consequence of sexual assault—that is, pregnancy—and to avoid the difficulties that menstruation might impose on her daughter. "I leave my daughter alone all day long and someone may break into the house and assault her. If my daughter gets pregnant, that would shame and dishonor us," Salwa tells Raseef22, speaking at her home in the low-income Saft el-Laban district in the Giza governorate. "My daughter is physically mature, but her mind is still that of a three year old," Salwa explains to Raseef22. "I feel helpless, and I cannot send my only daughter to a specialized learning centre or association to train her to take care of herself." An agreement was reached at an obstetrics and gynaecology clinic downtown Cairo. "I explained to Dr. Hussein the situation my daughter was in, and he very much sympathized, reassuring me that the operation is easy and will not take more than two hours," Salwa recounts. She was asked to fill out a form stating that her daughter was suffering from uterine cirrhosis, thus requiring the full excision of the uterus, and that she was responsible for any damage suffered during the surgery. "We headed to the hospital. My daughter was fasting, as per the doctor's orders, and the operation was successful," adds Salwa. Farah is one of many young women whose families have resorted to this unseemly measure due to their intellectual disabilities, fearing the “dishonor” that would ensue if the girl were raped and became pregnant. Families in the capital and surrounding governorates go to specific clinics where doctors act as mediators between the parents and the hospital. Since hospitals generally do not authorize such a procedure, certain doctors are known to counterfeit reports to justify the need for the operation, and thus, the procedure is approved. In rural Egyptian towns and smaller villages, where the eyes of the authorities are not as watchful, families need not go to such great lengths. Doctors will often agree to perform the procedure in their own clinics, out of “sympathy” for the families. [h2]The Facts in Numbers[/h2] Official figures in Egypt show that 72% of Egyptians with special needs fall into the 15-64 age group, the majority of whom suffer from an intellectual disability. A survey was conducted by the National Center for Sociological and Criminological Research, entitled "Types of Violence against Persons with Disabilities" in six rural villages in Egypt. The study found that 85% of the female participants had undergone hysterectomies in clinics and hospitals. Of these, 53% were in Cairo, while 30.3% were in Upper Egypt. The National Council for Motherhood and Childhood Hotline for Children with Special Needs received 9,490 reports of physical violence against girls and women with disabilities during 2016, an average of 26 reports per day, according to Deputy Minister of Health and Population Maisa Shawky, speaking at a press conference at the National Population Council. [h2]Sexual Abuse[/h2] The screams of 20-year-old Ayat echoed through the apartment, awakening residents of the building in the Dar el-Salam neighbourhood of Cairo. The screams only got louder and the neighbors gathered around the door and began knocking violently, while the mother stood outside crying in a panic, frantically trying to turn the key in the door, but to no avail—the door was locked from the inside. The neighbours finally broke down the door and piled into the room, only to find Ayat crying while her brother stood at the doorway, naked, panting and mumbling unintelligibly. Thus, Hanan Rajab Qutb narrates what happened to her daughter Ayat Abdul Hafiz. She recalls that she rushed to her daughter and screamed: "If only I haven't left you home alone." The mother, who is in her 50s, went out to visit one of the neighbors, unsuspectingly leaving her daughter with her 22-year-old unemployed brother Reda Abdul Hafez. When the house was empty, he assaulted her, taking advantage of the absence of the trusting mother. The brother later admitted to repeatedly assaulting his sister, whom he threatened with murder if she told anyone. Feeling that there was no escape from danger, even in her own home, Qutb decided to take an extreme measure to “protect” her daughter. Faced with the prospect of her disabled daughter bearing a child of incest, she decided to force her to undergo a hysterectomy. "My daughter reached puberty at a young age. Removing her uterus will block hormone production, and therefore, she will not be as attractive to rapists. The procedure will also protect her from pregnancy, in the case of rape," Qutb tells Raseef22. "She has also suffered a lot of embarrassment during menstruation due to her lack of knowledge of personal hygiene and how to take care of herself," adds the mother. When she managed to save the money needed for the operation, which costs 9,000 Egyptian pounds ($500), and obtained the written consent of a doctor, she rushed to a private hospital, where she filled a form to have Ayat undergo a hysterectomy. [h2]The Absent Role of the Government[/h2] The role of the state, and in particular that of the Ministry of Social Solidarity, is completely absent when it comes to raising awareness about, or the curtailment of, such operations, and protecting the victims. Amal Gouda, a member of the Coalition for Children's Rights, says that the Ministry of Social Solidarity does not acknowledge the type of protection it must provide, and the rehabilitation it is supposed to offer. Instead, it insists that its role is limited to vocational rehabilitation only, and providing vocational education for those with special needs so that they are able to earn their livelihoods. The ministry neglects social and medical rehabilitation, as well as the importance of integrating young women with special needs into society, and teaching their families how to protect them, instead of resorting to such operations. "It makes no sense to perform hysterectomy on young women with special needs under the pretext of fearing their rape," Gouda tells Raseef22. She expresses her condemnation of these forced hysterectomy procedures, referring to it as a failure to protect these young women. She moreover contends that these kinds of operations increase the likelihood of rape, and grant parents a sense of amnesty, allowing them to leave their daughters without protection. [h2]Parents Defer Responsibility[/h2] Gouda says that the parents resort to such operations to evade the responsibility they should bear in terms of taking care of, supervising, and making efforts to integrate their daughters into society. Such procedures, which fall under the category of physical violence, cannot be justified by medical motives or personal safety reasons. Rather, they mask a clear inability or unwillingness to protect the young women from all forms of violence against them, including sexual violence. Rasha Ernest, an activist for the rights of persons with special needs, believes that an adolescent girl with an intellectual disability should be treated like any other girl, and thus must be granted all the same rights, including the right to health and natural and undiminished growth in all stages of her life. She adds that the removal of any part of the body is an act of unjustified discrimination that violates the principles of equality and is considered an assault on the girl's body and free will. Ernest believes that protecting girls from rape and pregnancy is the responsibility of the parents, as they should bear the responsibility of teaching their teenage daughters how to protect their bodies. This requires an overhaul in the way that families and society regard young women, and in particular those with special needs. There must be an effort to recognize them as equal to their peers, and not a source of shame and disgrace. [h2]Doctors Consider It a Humanitarian Act[/h2] Egypt's National Council for Disability Affairs stated in a report that 400 hysterectomies are performed on young women with intellectual disabilities every year. However, the Egyptian Medical Syndicate countered by stating that hysterectomy procedures are only performed on a small scale, not exceeding two operations per year. "The obvious discrepancy in the figures stems from the falsification of the patients' medical reports," says a former head of the Medical Syndicate to Raseef22, refusing to give his name. "The cause of the operation documented in the medical reports of girls who undergo hysterectomy is uterine cirrhosis or bleeding. The real cause, which is intellectual disability, is rarely reported, which is why it is difficult to obtain accurate figures that illustrate how widespread these operations are," he adds. The former head of the syndicate believes that some doctors agree to perform the operation, despite the fact that it is illegal, because they sympathize with the family. "Operations are no longer confined to the slums and rural areas and are no longer conducted in secret. They are being performed in public and private hospitals, with the treating physician facilitating them," he adds. [h2]Legal Measures[/h2] Article 30 of the Egyptian Penal Code states that the removal of any part of the human body without medical necessity is a crime. However, Ahmed el-Gohary, a lawyer and Deputy Chairman of the Board of Trustees of the Egyptian Foundation for the Support and Empowerment of the Disabled, explains that the problem lies in the scarcity of complaints on cases related to persons with disabilities. "In most cases, the decision to commit the crime is taken by the family. Hence, there is a need to grant more authorities to human rights organizations concerned with the affairs of persons with disabilities to file complaints related to violations against disabled people, without waiting for the aggrieved party to file a complaint themselves." El-Gohary believes that there is a legal loophole in Egypt in terms of criminalizing these operations. Although the state has signed an international convention that guarantees the protection of people with special needs, the Egyptian law fails to provide the legislative framework that criminalizes violations or punishes perpetrators, despite the existence of six drafts for a law to protect persons with disabilities. [h2]Clinics Doing Business[/h2] In the bustling neighbourhood of Shubra in Cairo lies one of the clinics that is frequented by families to plan for hysterectomies in secret. The clinic doctors often refuse to negotiate over phone, preferring to reach a face-to-face agreement at the clinic. The cost of the consultation visit is 250 Egyptian pounds, and in a quick exchange, the doctor openly assents to the hysterectomy procedure for a girl with special needs. In the examination room, the doctor displays his price list, which lists 8,000 Egyptian pounds as the price for partial hysterectomy, and 9,000 pounds for a full hysterectomy. The price includes the falsification of a medical report showing that the cause of the operation is a problem in the uterus, such as cervical cancer or cirrhosis, which requires a hysterectomy. Half of the money goes to the doctor who performs the operation himself and the other half goes to the private hospital in the neighborhood of Heliopolis, where the operation is performed, after the parents sign papers releasing the doctors from responsibility in the event of any harm caused to the girl. This clinic is not considered an exceptional or a rare case, as many clinics, when directly contacted, confirmed that they perform hysterectomies on girls with disabilities. These included private clinics and hospitals, some of which are affiliated with the General Authority for Health Insurance. The doctor looks at the mother and tells her that he sees no use for a uterus in the body of a girl with an intellectual disability, since she will never marry in any case. That is to say that he is doing her and her family a service, and is bemused by the suggestion that the procedure is a violation of the daughter’s rights. The mother relaxes, and an agreement is reached.
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