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Irene’s story of academic resilience despite albinism

Tuesday November 17 2020
albns pic

Irene Kishe believes if students with albinism are given the required support in school, they can do wonders. PHOTO | COURTESY.

By John Namkwahe

People with albinism do not have a clear vision due to an underdevelopment of the central part of the retina called the macula, a challenge that affects their personal opportunities like schooling and career.

This is given the fact that low vision students may require more time to complete assignments and are usually slow readers because of the visual impairment. Because of this, some students with albinism are forced to drop out of school.

Due to the lack of pigment in the eyes, people with albinism have a number of vision difficulties; Reduced visual acuity, light sensitivity (photophobia) and rapid eye movements.

Irene Kishe, who has albinism, did not let her visual impairment prevent her from achieving her educational goals. Despite the challenges that she went through, today Irene is a holder of a Master’s degree in Co-operative and Community development from Moshi Co-operative University. She also holds a Bachelor of Arts degree in Marketing and Entrepreneurship and a Diploma in Cultural Heritage and Tour Guiding.

Irene’s education journey started at Makole Primary School in Dodoma in 2001. Thereafter she joined Oldadai Secondary School and later Bishop Durning High School, both in Arusha.

“As a person with albinism and therefore low vision, it wasn’t easy keeping up with the school environment. School environments were not that friendly but I just did not give up. Am grateful to colleagues who understood my problem and offered me support whenever they could. Some teachers too helped me at different levels,” recalls Irene.

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She adds; “One thing that never crossed my mind was dropping out simply because I could not see well. If students with albinism get support in school they can excel.”

Irene who is the third born and only person with albinism in her family, says her education journey would not have been possible without the support and encouragement she received from her family.

“I was so loved and taken care of just like any other child. My mother and father took care of me just like the rest of their children. My siblings considered me as being equal to them. There was no biasness in my family. My father believed in a girl child’s education so he took all of us to school,” narrates Irene.

The 2019 Survey on Socio-Economic Status of Persons with Albinism and Their Households in the Lake Zone shows that in Tanzania, persons with albinism face different forms of human rights violations, including difficulties in accessing education.

The survey further indicates that education systems for people with albinism differs across African countries. For example, in Zimbabwe children with albinism are educated in mainstream schools within their own community while across the border, in the Northern Province of South Africa, children with albinism may attend special schools for the visually impaired.

In Malawi, the government emphasises on a resource centre and the deployment of itinerant teachers for the blind and visually impaired including those with albinism. In Tanzania, the emphasis is on educating students with albinism in mainstream schools. However, less is known about the kind of support these students are receiving in order to learn effectively.

“There was this one teacher who for some reason managed to darken my school days when I was in Standard Five. I could not see on the blackboard and instead of helping me, all she did was yell at me that I was only good at zipping my bag. She never gave me any support. I hated that class and didn’t like the teacher either,” shares Irene.

A 2016 study titled; Experience of Students with Albinism in Tanzania: An Exploration of Barriers to School Completion, aimed to analyse the learning environment for students with albinism in a public inclusive secondary school in Kinondoni Municipality, revealed that students with albinism are twice vulnerable. They have low vison and therefore have difficulties seeing on the blackboard. They also are the target of bullying and name-calling.

“Most of my friends especially at school were great, they never called me names, only a few children in the streets called me names,” says Irene.

Ending discrimination in school

Non-governmental organisations like Tanzania Education Network and Under The Same Sun have stepped in to help address the problem with a view to ensuring that persons with albinism have access to quality education.

Mr Nicodemus Shauri, the programme manager for Tanzania Education Network recommends that government should take a varied approach towards ending the difficulties that people with disabilities face and that teachers should do their best to improve the learning environment in the classroom.

Article 24 of the 2006 United Nations Convention on the Rights of Persons with Disabilities states that disabled people should receive the support required to facilitate their effective education.

“Special attention will have to be paid to students with albinism mostly who are visually-impaired and are most likely to drop-out of school due to the unconducive learning environment. It is important that they be given support to stay in school and get the same education as their peers who do not have albinism,” argues Mr Shauri.

“Preferential seating is necessary for a student with low vision. Teachers should let the student select a seat where he or she sees best so they can easily copy materials written on the board or overhead projector. Black print on white paper is usually best. Contrast, print style and spacing of letters can be more important than print size,” says Mr Shauri.

Mr Kondo Seif, an advocacy officer from Under The Same Sun appeals to schools and government authorities to ensure academic institutions, especially those designated for persons with albinism are supplied with learning materials, such as the monocular and dome lenses to facilitate learning among students with low vision.

“The challenge is that most of these learning materials are manufactured abroad. They are imported and sold at a high price amounting to $50 (Sh115,950) per unit. I request government to finance procurement and distribution of these materials in schools,” says Mr Seif.

To promote inclusive education, Mr Seif says his office has designed education guidelines to be incorporated into the national education system if approved. This will ensure people with albinism have access to quality education and compete in the job market.

Dr Magreth Matonya, director of Special Needs Education Tanzania at the education ministry reiterates government’s commitment to ensuring people with disabilities have access to quality education.

“We have distributed learning materials to primary and secondary schools across the country. For example, large print books were distributed to primary schools for standards one to five to support learning to those with low vision,” says Dr Matonya.

She says government is reviewing the national education guidelines with a view to incorporating some additional sections in an effort to transform the education sector.

“Once the revised guidelines are released for public use, I encourage the teachers to adhere to the guidelines and ensure students with albinism have access to quality education,” Dr Matonya says.

East African governments developed a regional action plan for people with albinism in 2017. This plan is guiding Tanzania in developing a strategy to protect and support people with albinism nationally to address stigma and structural issues that lead to discrimination against people with albinism. The plan is analysing health and education policies to ensure public institutions provide effective services to people with albinism.

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