Globally, 1 in 18,000 people have albinism. In sub-Saharan Africa it's more common, with data from Tanzania showing that 1 person in 2,652 has albinism. According to Standing Voice, an international non-governmental organisation based in Tanzania, only half the children with albinism complete primary school and only 10 per cent access secondary school. The Conversation Africa's Nontobeko Mtshali spoke to Dr Charlotte Baker.
What challenges do school children with albinism face?
The myth that children with albinism will die young and that it's not worth devoting resources to their education means that many are prevented from attending school. Siblings without albinism may be prioritised, or assumptions may be made that children with albinism aren't as capable.
There are, in fact, no cognitive or academic learning disabilities associated with albinism. Children with albinism are able to perform as well as any other student in the class when their low vision is addressed.
Albinism is a rare genetic condition that limits the body's production of the pigment melanin in the skin, hair and eyes. Children with albinism face a number of challenges. One of them is low vision. In Africa, other big challenges include vulnerability to the sun and beliefs associated with albinism.
The visual impairment of children with albinism means that although they attend school, their needs aren't accommodated in the classroom. They'll also often have experienced serious trauma such as stigmatisation, bullying or neglect. This can affect their ability to learn effectively and develop a positive sense of personal identity.
Teachers play an extremely important role in the lives of children with albinism as they can help them to grow, learn and realise their full potential in life.
What are the repercussions if education systems, and societies, don't remove barriers to education for students with albinism?
Education is the basic right of every child and is essential for their cognitive, emotional, social, cultural and physical development. It provides the knowledge and skills they need to integrate into and contribute to their societies.
On a wider societal level, access to education is critical to tackling poverty, reducing inequality and empowering women and marginalised groups.
Children with albinism face multiple forms of discrimination which can lead to their exclusion from society. Attitudes towards people with albinism, as well as a lack of resources, can compound the challenges they face in accessing education.
It's important to acknowledge that the barriers that can prevent children with albinism accessing education are linked others in the domains of transport, health care and social services.
If societies don't remove barriers to education for students with albinism, the potential of these young people will be lost.
But getting children with albinism into classrooms is only a first step. It's essential that they can learn once they get there.
What can be done?
Teachers can remove physical barriers to learning. For example, they can make simple adjustments to accommodate the individual learning needs of each student.
These can be simple changes such as seating a child so that they aren't in direct sunlight, allowing them to wear a hat indoors to help protect their eyes, allowing them to move close to the board and making tasks and materials more accessible.
Teachers can also help children manage the fact that their skins are sensitive to the sun. For example, they can rearrange the school schedule so that outdoor activities take place in the morning or late afternoon to protect the child from unnecessary sun exposure.
Teachers can also contribute to fostering an understanding of children with albinism. They can help end name calling, the use of common yet disrespectful labels and dispel misconceptions about albinism.
Teachers and head teachers also play an important role in raising self-esteem. They can encourage young people with albinism to achieve by stressing that they have the same potential as others.
The effective integration of children with albinism into mainstream schools also has the potential to shape attitudes for the better.
How can these messages be conveyed?
One way is by sharing information, and offering advice. A booklet, "Albinism: An Information Booklet for Teachers in Tanzania" aims to do just that by improving teachers' awareness and understanding of the learning challenges faced by children with albinism.
The guide explains what albinism is and offers advice on how teachers can help children with albinism reach their potential. It includes an appendix on low vision and recommended classroom modification.
The booklet has been developed as part of the Albinism in Africa Project, funded by the Wellcome Trust and Lancaster University. The team included Charlotte Baker (Lancaster University), Gareth Dart (Worcester), and Patricia Lund (Coventry), working in partnership with the Standing Voice and the Canadian NGO Under the Same Sun.
The booklet is available in Swahili and English. It will initially be distributed to teachers and schools throughout Tanzania through the Standing Voice Vision Programme.