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The fight for inclusive education for children with hydrocephalus in Zimbabwe

DStv

By Tendai Makaripe

The life of Tinotenda Pasira, 14, from Rydaleridge Park, a suburb about 27 kilometers from Harare’s central business district, has been a continuous struggle since her birth in 2010.

Unlike other teenagers who enjoy their youth, plan their future and participate in school activities, Tinotenda faces a harsh reality.

He is confined to a wheelchair due to hydrocephalus, a serious condition that affects between one and three in every 1,000 babies worldwide and can lead to serious disabilities and life-threatening complications.

Hydrocephalus is characterized by an abnormal buildup of fluid in the ventricles of the brain, which widens them and puts pressure on brain tissues.

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

Despite the fundamental human right to education recognized in various local, regional, continental and global frameworks, including the Education Act (Chapter 25:04), the Constitution of Zimbabwe, the African Charter on Human and Peoples’ Rights and the Universal Declaration of Human Rights: Many children like Tinotenda are marginalized and cannot enjoy this right.

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

During this investigation, 263Chat interacted with affected children, their caregivers, primary and secondary school teachers, leaders of teacher representative organizations, 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, are struggling to access the education due to a multitude of reasons.

One of the reasons cited was that children with hydrocephalus often require the attention of parents and caregivers for physical and emotional care, which many public schools are not prepared to provide.

Tinotenda’s mother, Pelagia Mariyano, said: “Tinotenda suffers from frequent headaches and vision problems, and the need for continuous 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 such as aspiration and meningitis. My mother and I have endured many long hospital stays. There was a time when I had to be resuscitated after an aspiration. I have had numerous surgeries and the journey of surgeries continues.”

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

This can lead to a cumulative deficit in learning, where knowledge gaps become increasingly difficult to overcome over time.

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

Psychologist Ivy Mukombachoto added that the emotional and psychological effects of frequent illnesses cannot be ignored.

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

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

While in school, children need the attention of their parents and caregivers for physical and emotional care, something that many public schools are not prepared to provide.

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

Things like accessible bathrooms are important because these children cannot go to the bathroom independently.

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

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

Having properly equipped bathrooms with features such as handrails, larger stalls, and emergency call buttons can significantly improve your school experience and independence.

It was also noted that public schools often lack trained staff and resources to offer personalized attention, leaving these children at a significant disadvantage.

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

This finding is in line with the Zimbabwe Pulse report conducted in 30 educational districts by the Amalgamated Rural Teachers Union of Zimbabwe (ARTUZ), which revealed that inclusive education remains a distant goal because schools lack specialized facilities and trained staff to support children with diseases such as hydrocephalus. .

As a result, they drop out of school or do not enroll.

“Sustainable Development Goal 4 advocates for inclusive, equitable quality education and lifelong learning opportunities for all, but this cannot be achieved until students with disabilities are included in a meaningful way,” said ARTUZ President Obert Masaraure.

Everjoy Mahobho, 16, from Shurugwi, Midlands Province, does not go to school because those close to him do not have adequate infrastructure to meet his educational needs.

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

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

“In addition, teachers need training to understand the unique challenges that children with hydrocephalus face and adapt their teaching methods accordingly.

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

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

Mariyano said he had to remove Tinotenda from a preschool in Rydaleridge after parents threatened to remove their children, arguing that his disability was a distraction to his classmates. “I felt hurt because I expected better from them. My son did not choose his disability. It is a condition that cannot be changed, but he was deprived of education for those reasons. It hurts,” he said.

However, Ministry of Primary and Secondary Education communications and advocacy director Taungana Ndoro said the Ministry has Individualized Education Plans (IEPs), which are personalized plans developed for students with special needs to address their specific educational needs. .

“IEPs typically describe the student’s learning goals, accommodations, support services, and the roles and responsibilities of teachers, parents, and support staff,” she 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 that there has been no visible transformation in the education sector, making it difficult to achieve inclusive education even three years after the Education Law became law.

“There is no timeline for the aforementioned ‘progressive transformation’, and terms such as ‘subject to resource availability’ make accountability challenging,” he said.

According to a review of the 2023 budget by ARTUZ, only 0.68 percent of the education budget was allocated to social services aimed at funding these progressive and transformative policies.

In addition to the situation in schools, the financial limitations associated with caring for a child with hydrocephalus often force parents to prioritize immediate medical needs over education.

Tafadzwa Masuka (8) from Nyamandi village in Gutu, Masvingo province, does not go to 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 start to think that education is secondary because their health is our priority as parents,” Guvana said.

Mariyano is in the same financial situation.

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

“My husband’s employment contract was terminated. We need money for Tino’s rent, food and medical expenses. “We can’t afford magnet school tuition,” he said.

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

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

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

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

Continuing 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 managing medical emergencies.

Partnerships between schools and healthcare providers can ensure timely healthcare 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,” said social justice advocate Alois Nyamazana.

FCB

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