International Journal of Educational Development 39 (2014) 226–234

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International Journal of Educational Development
journal homepage: www.elsevier.com/locate/ijedudev

Identifying strategies to enhance the educational inclusion
of visually impaired children with albinism in Malawi
Paul Lynch a,*, Patricia Lund b, Bonface Massah c
a

School of Education, University of Birmingham, UK
Faculty of Health and Life Sciences, Coventry University, UK
c
The Albino Association of Malawi (TAAM), Malawi
b

A R T I C L E I N F O

A B S T R A C T

Article history:
Received 15 September 2013
Received in revised form 4 June 2014
Accepted 1 July 2014

Oculocutaneous albinism is an inherited condition with significant health and social impact on the lives
of those affected throughout sub-Saharan, including in Malawi. Myths and superstitions surrounding the
condition lead to stigmatisation, rejection and misconceptions. In a participatory study, consultations
with educational professionals, children with albinism and their families documented the barriers to full
educational access and revealed low-cost strategies that could be implemented in mainstream schools,
to minimise the effect of the visual impairment associated with albinism. These were captured in two
information booklets in English and vernacular, one for children and the other appropriate for teacher
training.
ß 2014 Elsevier Ltd. All rights reserved.

Keywords:
Albinism
Visual impairment
Resource centres
Teacher training
Special educational needs

1. Introduction
I feared his hands; he had sores on them. . .my belief was that
whenever you see an albino you have to spit saliva on your chest
(Miles, 2011).
Children in African communities born with the genetically
inherited condition oculocutaneous albinism are strikingly different from their peers. Instead of the usual dark pigmentation they
lack melanin pigment in their hair, skin and eyes, making their hair
sandy coloured, their eyes blue to hazel and their pale skin
extremely sensitive to the damaging effects of the sun (Lund,
2005). The high risk of developing skin cancer makes it imperative
that all those with albinism adopt sun protection strategies from
birth, including wearing protective clothing and avoiding sun
exposure as much as possible (Lund and Taylor, 2008). Less obvious
are the eye problems associated with albinism: involuntary
nystagmus causing their eyes to wobble involuntary from side
to side, photophobia, poor depth perception, strabismus (squint),
poor visual acuity, and refractive errors (Yahalom et al., 2012). An
optometric study in South Africa found that 85% of the children
with albinism had less than 30% vision, even with best optical
correction (Raliavhegwa, 2001).

* Corresponding author.
E-mail address: p.lynch@bham.ac.uk (P. Lynch).
http://dx.doi.org/10.1016/j.ijedudev.2014.07.002
0738-0593/ß 2014 Elsevier Ltd. All rights reserved.

The very visible difference in appearance of those living with
albinism can lead to a lack of acceptance and poor social
integration. A myriad of myths and superstitions surround the
condition (Baker et al., 2010; Braathen and Ingstad, 2006), leading
to stigmatisation, rejection and a lack of understanding about
albinism. Alex Munyere describing his personal experience of
living with albinism in Kenya called it ‘a disability that others do
not understand’ (Munyere, 2004). The vulnerability of people with
albinism has been dramatically highlighted by reports of
dismemberment and killings in Tanzania and other regions of
central and east Africa, to obtain their body parts for use as ‘good
luck’ charms (reviewed in Cruz-Inigo et al., 2011).
Albinism has been recorded throughout sub-Saharan Africa
with estimated frequencies of between 1 in 2000–5000 (Hong
et al., 2006); however there are few detailed epidemiological
studies that provide evidence of the frequency of the condition in
the region. Published data on the prevalence of albinism among
schoolchildren in Zimbabwe and South Africa estimate that there
are up to 7000 people living with albinism in Malawi, assuming a
total population of 14.86 million and a prevalence of 1 in 2000
(Lund, 1996; Lund and Gaigher, 2002).
In order to help address the paucity of data on the lives of people
with albinism, a small team of Malawian and UK researchers
carried out a study to collect primary data about school children’s
experiences living with the condition in different educational
settings in Malawi. Seeking to use participatory research
techniques (Lynch et al., 2012), the team designed tools that

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