From the first moments of her child’s diagnosis with autism spectrum disorder and intellectual delay, Asmaa Ali (28 years old) was not treated as a mother facing a complex human circumstance, but as the “prime suspect” at whom the arrows of blame and stigma are aimed, as if her child’s disability were an unforgivable sin. In the prevailing social logic, disability is not viewed as an incidental event or a biological probability, but as evidence convicting the mother: her negligence, her ignorance, her body, her behaviour during pregnancy, or even her “genes”.
This narrative reproduces old patriarchal perceptions that see the woman’s body as a vessel of responsibility and error, and that separate the man from any actual accountability, even though science confirms that the causes of disabilities may be shared genetic ones or entirely unknown.
Inside the marital home, this system was clearly reflected: while the husband withdrew from providing for and caring for the child, “Asmaa” remained alone in the position of responsibility, expected to be the ideal, patient and self-sacrificing mother, without the father ever being asked about his absence or his failings. This gendered imbalance in the distribution of roles is not an exception but a recurring pattern; the mother is reduced to the role of unpaid caregiver, while the father is granted, socially and legally, a wider margin to withdraw, and sometimes even to disown his responsibility entirely.
The stigma and blame that Asmaa faced took on a deeper dimension as a result of the interventions of the extended family, as the husband’s mother turned into a “guardian of reputation”, hiding the disabled child from the eyes of relatives, not to protect him, but to protect the family’s image, as if he were a shameful secret. As Asmaa watched this, her heart was torn, because she fears for her son in a world that learns early on how to exclude those who are different. Here, it is not only the child who is excluded, but the mother too, as the source of “shame”, and these practices reveal how women are used as an intermediary to bear a collective social stigma, while the man remains outside the circle of accusation.
One day her husband said to her, without hesitation: “Let’s leave the boy to live with your mother.” He was ashamed of the boy’s disability, and always called him crazy or an idiot. At that point, Asmaa realised that what she was living was not a marriage but a daily war of attrition with a harsh, irresponsible partner who had chosen his personal comfort at the expense of her and her child. Because she is a poor woman without a job, she tried to be patient, but her mental state deteriorated and her days became a mixture of exhaustion, fear and guilt, until she reached breaking point: she filed for divorce on grounds of harm, and the court awarded her maintenance for herself and her child; she filed another lawsuit for the costs of the therapy centres, and a ruling was issued for an amount that was “very small”, as she tells Zawia3.
The battle did not end there; her ex-husband resigned from his private-sector job and proved to the court that he was unemployed, so the payments almost stopped, and she found herself once again alone, in the corridors of the courts, with no income to live on except the maintenance for divorced women and children paid by Nasser Social Bank through the Family Insurance Fund, up to a maximum of EGP 500 a month, and monthly aid provided to her by her family. Amid all this, society was adding another layer of pain.
All the blame is directed at the mother. “You are the reason”, “You must have neglected the child and left him in front of screens, or maybe you took a harmful medicine during pregnancy”: words said easily, without knowledge and without mercy, which hold the mother alone responsible for autism and intellectual disability, leaving her without support or backing, on the verge of breaking down.
Asmaa says she does not regret choosing divorce and choosing to devote herself to caring for her son, so as to provide a calm life for him and for herself. Now she works during the daytime hours that the child spends at nursery, and fights to build a safer small world for her child. Yet her story is not an exception, as many mothers are left alone in the face of disability, stigma, and family and legal abandonment.
Radwa Ahmed (32 years old) tasted the same bitter cup early on: just seven days after giving birth to her first child, she found herself alone after her husband divorced her, carrying an infant with Down syndrome and facing a society that sees in difference nothing but a burden to be fled. Her husband could not bear the idea of having a child with a disability; he shouted angrily in her face: “I have the right to have a healthy child.” He was not only expressing shock, but a patriarchal conception that sees fatherhood as a privilege conditional on the child’s physical and mental perfection.
What the doctors at Egypt’s National Research Centre said did nothing to help her or their child, when they confirmed that the condition was not hereditary, nor the result of anyone’s mistake, but rather fate. Despite that, the father chose divorce and complete withdrawal from responsibility, out of fear of facing society and its stigma, and pushed her to sign a release of her marital inventory and a waiver of her rights to the deferred dowry and her maintenance, and he quickly left the lives of the child and the mother, leaving Radwa to face everything alone. He paid no maintenance and provided no financial support, even though his financial situation was good at the time. Here, gender intersects with class and age, so that vulnerability is doubled and motherhood turns into a struggle for survival.
When the divorce took place, the country was living through the turmoil that followed the 25 January 2011 Revolution, and Radwa was still a university student, with no money and no experience; she did not even have the means to hire a lawyer. All she had was her will and her fear for her little child, so she made the decision not to marry again and chose to stay by his side to care for him. At the same time, she completed her university education and obtained a bachelor of arts degree from the psychology department, in an attempt to understand her son’s condition and how to deal with his psychological and behavioural needs.
She tells Zawia3 that she worked giving private lessons to children, making use of the hours when her son was at school, and every pound she earned went straight to speech therapy, skills development and physiotherapy sessions, so that he could speak and walk. For years, financial crises pursued her, especially with rapidly rising prices and the absence of any regular maintenance.
She searched for a better education for her son, so she decided to move from Cairo to Alexandria, because the “intellectual education” schools in the capital were overcrowded, bringing all disabilities together in a single class of twenty children. In Alexandria, she found a new school with better supervision and classes of no more than seven students; she moved into her mother’s flat there, trying to create a more humane space for her son.
The years passed slowly until the child grew up and became a teenager, and the responsibility grew with him. After more than ten years of silence, in 2022 Radwa turned to legal aid at the family court and filed a lawsuit demanding maintenance from her ex-husband for their child, and the court ruled for monthly maintenance of EGP 1,500, but it was not paid regularly: arrears of eight or nine months would accumulate, and each time it took four months in the corridors of the courts and another two months for enforcement. Even when she tried to collect part of the maintenance through Nasser Social Bank, she discovered that the cost of transport and the waiting queues almost equalled the amount she would receive; so she chose to let the maintenance accumulate and then file arrears lawsuits to collect it in one go.
In these contexts, the law does not work as a tool of justice so much as it becomes an additional, exhausting path. Irregular maintenance, long procedures and the cost of accessing government support are all factors that make women bear an invisible burden, added to the burden of daily care. The paradox is that the state implicitly recognises the child’s right to maintenance, but leaves the mother to bear the psychological and material cost of collecting this right.
Today, her son is 14 years old. He can walk, talk, express himself and use the toilet on his own, despite his laboured speech: small achievements in the eyes of some, but for Radwa they are great battles she won through patience and will. Yet she still feels wronged, as a result of social stigma, paternal abandonment and the heavy price mothers pay when they are left alone in the face of “difference”. All Radwa hopes for is that her son be seen as a human being, not a burden, and that society realise that disability is not a reason to run away, but a shared responsibility that starts with the family.
As for the experience of Hoda El-Sayed (36 years old), it reveals another face of gender-based violence: intertwined domestic and societal violence. At first, she did not know what her infant daughter was suffering from; the baby rarely slept and kept crying and screaming day and night. With every scream, the blame around her multiplied in the marital home, which was itself the home of the husband’s family, who set up an open court for her: the husband blamed her for falling short in the housework, and his mother was the harshest judge, dragging the neighbours into her daughter-in-law’s life without permission, while the mother was required to explain and justify herself to them.
When her doubts about the child’s condition grew, she took her to see doctors; one diagnosed her with abnormal electrical activity in the brain, another with developmental delay, before she was diagnosed with severe autism. At first, the husband’s family tried to convince her that the doctors were lying and that the child was not like that, and shortly afterwards the husband’s mother began stigmatising and taunting her in front of the neighbours, before contriving a quarrel and throwing her and her daughter out of the house. She then went out into the street, carrying her little one, who had not received a dose of her medicine and whose wet nappy had not been changed, not knowing where to go. Here, gender-based violence takes its most extreme form: the mother and her daughter were left without protection and without shelter.
That day, her siblings tried to intervene, but the mother-in-law refused even to open the door. In the end, she allowed her in for a few minutes, only to take the child’s medicine and a few simple clothes, and then to leave without her belongings and furniture; she carried nothing but a blanket to keep the little one warm. She moved to her sister’s house, but her sister could not bear the child’s constant screaming, so she took them to the house of their late mother to serve as a refuge for them. There, a new battle began with society: the child’s screaming disturbed the neighbours, and some of them threatened to call the police, accusing her of torturing her daughter.
The mother learned that no one would show her daughter tenderness and support her as much as she did, so she turned to searching online and to support groups, and took training courses so that she could calm her daughter’s tantrums and teach her to use the toilet and to take care of herself, turning from a frightened mother into an expert. After about ten years, the child became able to speak and to enrol in school within the inclusion system, but the stigma has not completely disappeared: to this day, there are female relatives who give birth and hide the news from her, and weddings and occasions to which she and her daughter are not invited. She used to suffer from the blame, social rejection and discrimination, and then she decided that her daughter was enough for her.
In the experiences of Asmaa, Radwa and Hoda, children’s intellectual disability does not appear only as a medical condition or a developmental difference, but as a revealing lens on an unequal structure of gender roles, which places on women, and on women alone, the cost of care, guilt and stigma, and which often exempts men from both moral and material responsibility. Despite that, each of them insists on redefining motherhood outside the discourse of forced sacrifice. They chose divorce, or isolation, or rebuilding their lives, not as a failure, but as an act of resistance against a system that sees disability as shame, the mother as the cause, and the man as optional.
From a gender perspective, these stories reveal that disability does not produce injustice on its own, but intersects with patriarchal structures that place on women the burden of “total care” without recognition or protection; the mother is not merely a provider of care services, but a “social shield” that absorbs blame, conceals institutional failure and exposes the fragility of the family and legal support system.
The Burden of Care and Society’s Blame
Mothers of children with intellectual disabilities in Egypt are subjected to compound forms of blame and social stigma that cannot be separated from the gender structure governing family relations and the division of roles within society. This blame begins in the narrow family circle and extends into the public sphere, and in some cases may end in divorce, abandonment of the child or refusal to provide for him. In this context, the mother is held fully responsible for her child’s disability, as the main “gendered actor” in care and childbearing, while the father is often excluded from the circle of accountability, whether morally or medically.
Yasmine Matar, an expert at the National Council for Persons with Disabilities, explains that this pattern of stigma takes multiple forms: in cases of autism, the mother is accused of negligence or of failings in upbringing, while she is burdened with what Matar describes as “genetic guilt” in cases such as Down syndrome or hereditary disabilities, despite the absence of any scientific basis proving the responsibility of one party. She links these perceptions to the prevailing social culture, levels of education and a preferential view of males, which means that giving birth to a girl with a disability is viewed as a “double failure” borne by the mother alone, as the one held responsible for both childbearing and the sex of the newborn.
Speaking to Zawia3, the expert points out that some hereditary disabilities, such as “Fragile X” syndrome, exacerbate the gendered pressures on mothers, as the disability may recur with every male birth, which pushes some husbands to withdraw from the marital relationship or to refuse to have children altogether, out of fear of “repeating the mistake”, even though these cases do not necessarily mean that the mother’s genes are the cause.
She stresses that the causes may be shared between the father and the mother, and that the scientific verdict remains dependent on carrying out genetic tests, not on preconceived moral or social judgements.
“Yasmine” explains that families usually go through several stages when they discover a child’s disability, beginning with shock, then denial, then blame, up to the stage of decision-making: either withdrawal and flight, or rehabilitation and acceptance. However, the gender dimension is clearly manifested in the fact that many families stop at the stage of blaming the mother specifically and are unable to move beyond it, which keeps the woman trapped in a cycle of permanent accusation that reflects negatively not only on her mental health, but on the child himself.
She notes that children with intellectual disabilities are more vulnerable to discrimination within the family, as in some cases clear discrimination is observed in spending and in the quality of food and clothing, compared with their siblings without disabilities. From a gender perspective, this discrimination is read as an extension of the logic of “selective investment” in children, whereby the child with a disability is viewed as being of less “social utility”, while the mother is left to face the consequences of this marginalisation alone, as the one responsible for his daily care.
Gender-based violence does not stop at the boundaries of the family, but extends into the wider social sphere, where mothers are sometimes subjected to direct social violence because of their children’s behaviour while playing or in public interaction, behaviour that by its nature differs from that of other children. This violence pushes many women into social isolation and into avoiding contact with those around them, in an undeclared process of exclusion that removes both mother and child from the public sphere.
Yasmine adds that depression and burnout are common features among mothers, especially after the stage of initial shock. Even in cases where the mother shows outward acceptance and contentment, an internal comparison with other children remains present, aggravating the psychological pressures resulting from constant thinking and unbalanced caregiving responsibilities. She believes that this reality reveals the absence of any real institutional support, calling for systematic and early intervention with families from the moment of diagnosis, not limited to “consolation”, but including organised family counselling programmes that redistribute roles within the family and help it confront social stigma.
The expert explains that determining the genetic causes of a disability requires precise tests, and that scientific integrity requires informing the family of their results to help it make informed decisions about having children, stressing the need to stop holding the mother responsible for causing the disability without any scientific basis. She points out that the responsibility for adhering to therapeutic or rehabilitation programmes may in practice fall on the mother, since she is the one most present with the child, which once again reflects the unfair distribution of the burden of care within the family.
Meanwhile, Amal Mobdy, president of the Sports Federation for Intellectual Disabilities, believes that over many years mothers of children with intellectual disabilities have faced deep-rooted patterns of social stigma and blame, stemming from cultural assumptions that place the responsibility for care and its consequences entirely on women, considering that the intensity of this phenomenon has declined relatively in recent years compared with the past, owing to growing public awareness and the state’s intervention in this file.
She explains that many mothers used to be held directly responsible for the child’s disability, whether by the extended family or by the surrounding social circle, in a context that reproduces traditional gender roles which assign to the mother alone the task of childbearing and care, and then hold her to account for any “difference” that arises, pointing out that these practices occur in some families, but have declined with the appearance of children with disabilities in public space, especially through events such as “Differently Able”, which helped break the stereotype that used to besiege mothers and gave them greater space to take pride in their children and to highlight their abilities, especially in sport, instead of confining them to a position of permanent self-defence.
She tells Zawia3: “Although the federation plays a primarily sporting role, while offering some awareness activities or lectures for parents from time to time, as complementary efforts that do not address the gap in the structural support that mothers bear alone most of the time.
She touches on the pivotal role that mothers play in the lives of children with intellectual disabilities, not only in daily care, but in medical follow-up, rehabilitation, sports training and managing every detail of life, pointing out that the rate of fathers’ participation in bearing these responsibilities is extremely small and may not exceed about 5%, compared with the enormous caregiving burden on mothers, which reflects a gender gap in the distribution of caregiving roles within the family, especially in cases of disability, as the child depends on the mother, while the father is absent or of limited presence, or confines himself to the financial role.
Mothers Alone in the Battle of Care
Paternal abandonment of children with intellectual disabilities cannot be read as isolated individual behaviour, but as part of a wider social pattern in which paternal responsibility is reformulated according to an unequal gendered division that places the full burden of care on women and allows men a wide margin to withdraw without real accountability. Ahmed Hanafy, a child protection consultant at the National Council for Childhood and Motherhood, explains that a not insignificant number of fathers, as soon as they discover that the newborn has an intellectual disability, choose to distance themselves from the family under the weight of economic and social pressures, either through divorce and formal separation, or by withdrawing in practice from the lives of the wife and child while formally retaining the title of “father”.
He explains that this withdrawal takes multiple forms, beginning with leaving the wife in her home with the children without any actual support, and possibly extending to starting a new life by remarrying or living independently, sometimes paying no more than symbolic sums that are not commensurate with the complex needs of the child with a disability. He notes that some fathers view the disabled child as a “burden” that threatens their traditional conception of masculinity as the capacity for production, achievement and social success, not care and nurturing, especially if the child is the first at the start of the marriage, when disability is redefined as a personal obstacle in the course of the father’s life, not as a shared family responsibility.
In contrast to this pattern, he stresses that there are examples of fathers who deal with disability as a human and moral test and continue to bear their responsibilities towards the child and the family. However, the core problem lies in the fact that the father’s withdrawal is not met with decisive social rejection, but is sometimes justified on the pretext of “inability” or “pressure”, while the mother is left, often as the first victim of this structural imbalance, since she is automatically pushed into the position of sole caregiver, even in the absence of any material or psychological readiness, and regardless of whether or not she works.
He tells Zawia3: “Even working mothers find themselves facing care costs that exceed their income, including rehabilitation sessions, treatment and medical follow-up, in addition to the invisible daily burdens of care at home. In this context, the father’s absence is not limited to its psychological impact, but extends to directly affect the level of services the child receives.”
He points to a structural gap in the services provided to children with intellectual disabilities in Egypt, in which disability intersects with poverty and gender: inclusion and special education schools are limited in number and the procedures for enrolling in them are exhausting, and government centres are under severe pressure, while private centres remain expensive and out of reach for the majority of families, especially those supported by women. He adds that government rehabilitation sessions are often short and irregular and do not allow the required progress, and consequently class differences are clearly reflected in rehabilitation outcomes and in better opportunities for partial inclusion or relative independence.
He addresses the geographical disparity in the availability of services, explaining that rural areas and villages suffer an acute shortage of rehabilitation centres, which are concentrated in the big cities, placing additional burdens on mothers related to transport, or forcing them to keep the child at home without any rehabilitative intervention. He points out that this institutional absence may push some families into dangerous ways of dealing with children with intellectual disabilities, such as restraining them inside homes or leaving them unsupervised, in an environment lacking community protection, where they become more vulnerable to exploitation, whether sexual or economic, because of their limited ability to discern or to report.
He adds: “In the absence of comprehensive protection policies, and with weak psychological and social support services, dealing with intellectual disability becomes more complicated as the child grows older and his mobility increases without sufficient awareness of risks, which pushes some families, despite their limited resources, to resort to shelters or residential care in search of a minimum of safety”, stressing that the burdens on the family double in the case of separation and reach their peak when the mother is left alone without sufficient income or a support network. In the absence of supportive policies, and with modest government services, mothers and their children are left in direct confrontation with poverty, gender-based stigma and the risks of exclusion and violence, in a scene that reflects a structural imbalance that cannot be blamed on individuals alone.
Gendered Stigma Linked to Disability
For her part, Dr Hagar Ramadan, a specialist in psychiatry and addiction treatment, explains that intellectual disorders often have genetic or hereditary causes, and that their source cannot be determined with certainty nor can one party be held responsible for them; society, however, within its male-dominated structure, tends to lay the blame on the mother alone, as the primary caregiver, which multiplies the psychological burdens on her.
She explains that the mother in the Egyptian context bears a compound burden: she is responsible for the child’s health care and education, for accompanying him to clinics and for managing the household, and at the same time she is held socially accountable for every behaviour he displays, from the moment of diagnosis, through the stage of upbringing, up to adolescence. She tells Zawia3: “Society interprets the child’s behaviour in moral or educational terms, so the mother is blamed if the child does not speak, or if he continues to wear nappies, or if he shows aggressive behaviour, without any consideration of the nature of intellectual disability and its effect on development.”
She points out that this pattern of stigma extends into adolescence, when sexual desires appear in some children, and the burden is placed entirely on the mother, who is accused of negligence or bad upbringing, in the absence of any societal or institutional discourse that recognises the rights of children with disabilities to understanding, protection and specialised care.
“Hagar” warns that this accumulated pressure may push mothers into social isolation, a chronic sense of guilt and long-term bouts of depression and anxiety, especially in the absence of real support networks. She also stresses that the mother’s psychological exhaustion is reflected directly on the child, as she represents his main source of security, and if she is exhausted, depressed or emotionally detached, both enter a closed cycle of mutual tension, which in extreme cases may lead to suicidal or harmful thoughts.
She believes that confronting this crisis requires a multidisciplinary approach, beginning with dismantling the gendered stigma linked to disability, expanding the scope of specialised services at affordable prices and providing systematic psychological support to caregivers, especially mothers, in order to protect the children themselves, ensure family stability and reduce the long-term psychological and social risks.
Under this social reality, disability intersects with patriarchal and societal structures to multiply the burdens on women, as the mother bears the double burden of the child’s daily care and of social blame, while the father is often exempted from moral and material responsibility.
In this context, every step towards the child’s rehabilitation, and every small victory in pronouncing a word or achieving partial independence, becomes a double win: for the child in facing challenges, and for the mother in the battle to redefine her role outside the discourse of forced sacrifice.
Without restructuring family and institutional support, many mothers will remain alone, between society’s stigma, the exhaustion of care and the absence of state protection, facing every day the consequences of a system that recognises difference only as a burden that falls on women alone.
This report was produced as part of a fellowship with Free Press Unlimited, under the editorial supervision of Ruba El-Helou.
