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The Struggle for Inclusive Education for Children with Hydrocephalus in Zimbabwe

By Tendai Makaripe

Life for 14-year-old Tinotenda Pasira from Rydaleridge Park, a suburb about 27 kilometres from Harare’s central business district, has been a continuous struggle since his birth in 2010.

Unlike other teenagers enjoying their youth, planning futures, and participating in school activities, Tinotenda faces a harsh reality.

He is confined to a wheelchair due to hydrocephalus, a serious condition that affects one to three per 1,000 infants globally and can cause severe disabilities and life-threatening complications.

Hydrocephalus is characterised by abnormal fluid accumulation in the brain’s ventricles, which widens them and puts pressure on brain tissues.

This condition poses a significant global health burden, particularly in sub-Saharan Africa, where around 180,000 new cases are reported annually, according to American paediatric neurosurgeon Benjamin Warf.

Despite the fundamental human right to education recognised in various local, regional, continental, and global frameworks—including The Education Act [Chapter 25:04], the Zimbabwean Constitution, the African Charter on Human and Peoples’ Rights, and the Universal Declaration of Human Rights—many children like Tinotenda are marginalised and unable to enjoy this right.

This publication conducted a one-and-a-half-month-long investigation across several provinces, including Harare, Mashonaland East, Manicaland, and Masvingo to understand the challenges hindering educational access for children with hydrocephalus.

During this investigation, 263Chat interacted with affected children, their caregivers, primary and secondary school teachers, leaders of teacher representative organisations, government officials, lawyers, and analysts.

In Harare, several children with hydrocephalus, including Tinotenda, Anashe Kanosvamira (7) from Ushewokunze, Berven Chingwaru (7) from Kuwadzana 2, Brandon Mupota (6) from Hopley, and Daniel Moda (6) from Damafalls, struggle to access education due to a plethora of reasons.

One of the cited reasons was that children with hydrocephalus often require parental and caregiver attention for physical and emotional care, which many public schools are ill-equipped to provide.

Tinotenda’s mother, Pelagia Mariyano, said: “Tinotenda suffers from frequent headaches and vision problems, and the need for continual medical treatments keeps him out of school,” she said.

Tawana Monisha Chinhenzva (12), who suffers from encephalocele (protrusion of brain tissue outside the skull) and hydrocephalus, said: “My health problems have side effects like aspiration and meningitis. My mother and I have endured many long hospital stays. At one time, I had to be resuscitated after aspiration. I have had numerous surgeries, and the journey of surgeries continues.”

The cognitive impacts of hydrocephalus, such as difficulties with memory, concentration, and processing information, are compounded by the frequent interruptions to their education.

This can lead to a cumulative deficit in learning, where the gaps in knowledge become increasingly harder to bridge over time.

“Without consistent classroom engagement and the ability to follow a structured learning path, these children face substantial barriers to achieving their educational potential,” said Harare-based teacher Dexter Mazanhi.

Psychologist Ivy Mukombachoto added that the emotional and psychological effects of frequent illness cannot be overlooked.

“The constant cycle of health crises and recovery can be mentally exhausting for children, affecting their motivation and self-esteem,” she said.

“The stress and anxiety associated with their medical condition and its impact on their schooling can lead to disengagement and a lack of interest in academic pursuits. This emotional strain, coupled with the academic challenges, creates a formidable obstacle to their educational success.”

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While at school, the children require parental and caregiver attention for physical and emotional care, which many public schools are ill-equipped to provide.

Children with hydrocephalus often need assistance with basic activities such as moving between classrooms, using restrooms, and managing their medical devices like shunts.

Things like accessible bathrooms are important because these children cannot independently visit the toilet.

“The condition can cause damage to areas of the brain that control bladder and bowel functions, leading to incontinence,” said medical doctor Benedict Gudu.

The lack of accessible bathrooms means that children with hydrocephalus must rely on assistance for basic needs, which can be both physically and emotionally taxing.

Having properly equipped restrooms with features like handrails, wider stalls, and emergency call buttons can significantly improve their school experience and independence.

It was also noted that public schools frequently lack trained staff and resources to offer personalised care, leaving these children at a significant disadvantage.

This was a sad revelation considering that these professionals can help monitor the children’s health, administer medications, and offer emotional support, creating a more inclusive and supportive learning environment.

This finding is in tandem with the Zimbabwe Pulse report conducted in 30 education districts by the Amalgamated Rural Teachers Union of Zimbabwe (ARTUZ) which revealed that inclusive education remains a distant goal because schools lack specialised facilities and trained personnel to support children with conditions like hydrocephalus.

Resultantly, they drop out of school or do not register in the first place.

“Sustainable Development Goal 4 advocates for inclusive and equitable quality education and lifelong learning opportunities for all, but this cannot be achieved until learners with disabilities are meaningfully included,” said ARTUZ president Obert Masaraure.

16-year-old Everjoy Mahobho from Shurugwi, Midlands Province is not in school because those close to her have inadequate infrastructure to support her educational needs.

“None of the schools near me have the facilities I need to be comfortable and succeed in my studies. I need accessible bathrooms, specialised seating, and support for my medical needs, but these are not available,” she said.

Founder of Matifadza Hydrocephalus Care Organisation, Wadzanai Mhindirira concurred with Masaraure, adding that schools should adopt inclusive education policies that promote equal access for all students, regardless of their abilities.

“Furthermore, teachers need training to understand the unique challenges faced by children with hydrocephalus and to adapt their teaching methods accordingly.

“This might include allowing more time for assignments, providing notes and lectures in various formats, and ensuring that classroom activities are accessible to all students,” said Mhindirira.

In some learning institutions, discrimination against children with hydrocephalus is also a problem.

Mariyano said she had to withdraw Tinotenda from a preschool in Rydaleridge after parents threatened to remove their children, arguing that his disability was distracting classmates. “I was hurt because I expected better from them. My son did not choose his disability. It is a condition he cannot change, yet he was deprived of education on those grounds. It hurts,” she said.

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However, the director of communications and advocacy in the Ministry of Primary and Secondary Education, Taungana Ndoro said the Ministry has Individualised Education Plans (IEPs) that are personalised plans developed for pupils with special needs to address their specific educational requirements.

“IEPs typically outline the pupil’s learning goals, accommodations, support services, and the roles and responsibilities of teachers, parents, and support staff,” he said.

“Our policies often encourage collaboration between educators, parents, and support professionals to create a supportive learning environment for children with special needs.”

Analyst Lazarus Sauti believes there has been no visible transformation in the education sector, making inclusive education difficult to attain, even three years after the Education Act became law.

“There is no timeline for the ‘progressive transformation’ mentioned, and terms like ‘subject to the availability of resources’ make accountability a challenge,” he said.

According to a 2023 budget review by ARTUZ, only 0.68 percent of the education budget was allocated to social services meant to fund these progressive and transformational policies.

Besides the situation in schools, financial constraints associated with taking care of a child with hydrocephalus often force parents to prioritise immediate medical needs over education.

Tafadzwa Masuka (8) from Nyamandi Village in Gutu, Masvingo Province, is out of school due to financial constraints.

His mother, Constance Guvana, struggles to balance medical bills with the cost of education.

“When you are in our situation, you begin to think education is secondary because his health is our priority as parents,” said Guvana.

Mariyano is in the same financial predicament.

Tinotenda’s medical expenses are taking their toll on the family yet there is no money.

“My husband’s work contract was terminated. We need money for rent, food, and Tino’s medical expenses. We can’t afford tuition for a specialised school,” she said.

To address the challenges faced by children with hydrocephalus in accessing education, it is crucial to implement inclusive policies at both the governmental and institutional levels.

“Increasing funding for special education is essential, allocating more of the education budget to provide necessary facilities, trained staff, and adaptive learning materials,” said economist Benedict Marufu.

This includes building accessible bathrooms, ramps, and elevators, and equipping classrooms with specialised seating and technology.

The government should also introduce incentives for schools that adopt inclusive practices.

Continuous professional development for teachers and staff is vital.

Training programs should equip educators with skills to support children with special needs, including adaptive teaching methods, emotional support, and medical emergency management.

Partnerships between schools and healthcare providers can ensure timely medical attention without disrupting education.

“Public awareness campaigns to reduce stigma and promote understanding of hydrocephalus can create a more inclusive school environment, allowing all children to thrive academically and socially,” social justice advocate Alois Nyamazana.

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263Chat is a Zimbabwean media organisation focused on encouraging & participating in progressive national dialogue

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