Dr Patricia Lund is Senior Lecturer of Applied Sciences and Health at Coventry University. Here she discusses how the issue of albinism in being approached in Malawi.
Children with albinism are often excluded from full participation in education because of their visual impairment and the stigma associated with the condition in Africa.
Past studies have identified simple, low-cost adjustments that can be made in the teaching environment to accommodate the needs of this group of children in mainstream schooling. A better education will improve their opportunities in life and reduce the impact of stigma. Teachers were chosen as an entry point as, once trained, they can directly improve the education of this vulnerable group and also cascade information on albinism throughout their communities. Radio was chosen as one mode of information delivery as it is more readily accessible, reaching even remote, rural communities. Coventry University led this project as part of their studies on albinism in Africa, with funding from the Innovation Fund grant from Sightsavers UK.
In this project we aimed to:
- highlight and address the barriers to education often experienced by those with albinism and
- showcase low cost interventions (such as ensuring the pupil with albinism always sits at the front of the classroom and has their own book to read) that can enhance the classroom experience and lives of those with this inherited condition.
The team conducted field work in both rural and urban areas of Malawi, interviewing children, youths and adults with albinism as well as their parents and teachers. We gathered a wide body of evidence and experiences which was used to develop a radio drama.
Bonface Massah of The Association of People with Albinism in Malawi was a key member of the creative team developing the drama. He comments: The full participation of persons with albinism in the development of the radio drama from the onset, ensured that their voice will be heard in the drama.
The radio drama storyline
A young writer, Ian Simbota, was mentored by the scriptwriter of LOVE BUILDS, Edgar Nyirenda, as part of the project.
From this our talented scriptwriter, Edgar Nyirenda, developed characters and a storyline to both inform and entertain listeners.
Madalo is a nine-year-old girl with albinism. Her quest for education is challenged when she faces stigma and inadequate support from peers and society. Mr Zgambo, a new teacher at her school, is convinced that teachers, pupils and society can do better to address her needs. He believes LOVE BUILDS.
In the story, Madalo’s teacher does not at first realise that she is visually impaired and cannot see what is written on the board. Her classmates do not understand why she looks so different from them, and mock her. The drama shows how Madalo’s life is improved when the well informed Mr Zgambo arrives and educates both teachers and pupils about albinism.
The first episode of the radio drama (LOVE BUILDS) is available online here and you can read more about the development of the drama, the broadcasts and feedback from radio phone-ins, SMS and interviews in this report.
What listeners thought
A Form 4 student with albinism at secondary school stated that: the play is good; am happy with the way it was played because it will change the negative attitudes of the community towards people with albinism. Teachers have a responsibility to find out why and how a pupil with albinism is not doing well in class because having albinism doesn’t mean that you are lazy. Parents will also realise that it is their role to inform teachers about the condition of their children and make sure those children’s needs to put on protective wear to protect skin from sunburn and for them to take part in any activity that happens at school.
A student at technical college shared his thoughts on the drama: the play is educative, touching and marvellous. Every human being is entitled to enjoy his human rights irrespective of any disability. This play will definitely enlighten communities on the plight of persons with albinism. It exposes myths, wrong perceptions and all bad things that are said against persons with albinism that are not true at all. This will optimistically reduce stigma and discrimination that persons with albinism suffer.
Using multiple approaches
Emmie Chiumia co-hosted the phone-in programme after one broadcast. She commented: It was a nice one. People have a new mind, new ideas; they have the truth about albinism.
We wanted to use the radio as a mass media approach to reach the maximum number of people throughout Malawi, but many people (even teachers) do not have easy access to the internet to obtain further information and it was clear that there was a need for supplementary hard-copy materials such as posters and information booklets, which were also produced as outputs of this project.
Planning for the future
After the initial broadcast radio stations immediately demanded to know when the next episodes would be ready! We had to move quickly to capitalise on the success of the pilot and source additional funds from small charities in the UK to develop a series and explore the issues in more depth. We now (January 2015) have a total of four episodes in both English and Chichewa which have been broadcast (English version freely available on this blog.
We have plans to extend and expand this project into other countries in the region, notably Tanzania and Uganda, and look forward to working with new partners and contributors.
Thanks to the many people around the world who have contributed their time, expertise and ideas to this radio drama.
Outputs of this albinism project are freely available via Coventry University’s online repository here and on the DASH to Africa blog here.
By Dr Patricia Lund, Senior Lecturer for Applied Sciences and Health at Coventry University