Albinism is one of the commonly misunderstood conditions in many African communities. In some communities, albinism was viewed as a curse, a bad omen, or a punishment from the ancestors for atonement of wrong deeds. In others, albinism was viewed as a sign of bad luck that brought about either sickness or even death[1]. These misconceptions have fueled much hatred, discrimination, and social exclusion of persons with albinism. Report by the UN Human Rights Independent Expert indicate that in the recent past, due to the wrong belief that the body parts of persons with albinism can provide some form of wealth or fortune, persons with albinism have been abducted, mutilated, and killed in several countries in the region[2].
Albinism is a rare, non-contagious, genetically inherited condition that occurs at varying frequencies in populations all over the world, regardless of race or ethnicity. The most common form of albinism, oculocutaneous albinism, is characterized by the lack of melanin pigment in the hair, skin and the eyes, causing susceptibility and vulnerability to skin damage from exposure to the sun, including skin cancer. Due to this, lack of melanin in the eyes contributes to visual impairments, including photophobia, strabismus, nystagmus, low visual acuity, and refractive error[3]. Africa has the highest prevalence rate of oculocutaneous albinism, with an average rate of approximately 1 in 5,000 persons[4].
In most of the GPE KIX Africa 19 Hub countries in the Eastern and Southern Africa region, children with albinism still face stigma and discrimination which often affects enrollment, participation, and transition in the schools. Report from UNICEF Uganda office indicates that more than half of the persons with albinism have only attained primary school education and among this, over 75% have visual difficulties which leads to a high rate of school dropout. In addition, due to the poverty levels and lack of assistive devices, some children with albinism are unable to remain in school and there are no organizations to support their return to school.
In Madagascar, access to quality inclusive education remains difficult, and people with albinism continue to be among those who cannot access. Their access to education is limited due to a lack of adequate infrastructure, specialized learning resources, and trained staff. Few schools have trained teachers with the necessary skills and training to cater for pupils with albinism. In remote areas of the island, it takes 3 to 4 hours to walk from one village to another to get to school, and some people with albinism cannot go to school for fear of being attacked. In both rural and urban areas, pupils with albinism regularly face discrimination. However, the few persons with albinism who have been able to complete postgraduate studies successfully in various fields, although with a lot of difficulties, can serve as role model.
Children with albinism in Lesotho usually struggle to get support for their low vision as schools do not provide assistive devices such as magnifiers to assist the learners to learn independently. Only a few schools can provide the support of donors through the Ministry of education. In Kenya, most children with albinism are enrolled in integrated schools where there is some level of ignorance about albinism among the teaching staff. In some cases, children with albinism are made to sit at the back of the class and due to poor visibility, they can hardly see the board.
Despite all these challenges, there is a ray of hope for children with albinism in the region as many governments and stakeholders are working hard to support inclusion of children with albinism. For instance, the Tanzanian government has taken steps to address the challenges faced by persons with albinism through awareness campaigns on albinism matters as well as increasing their access to the healthcare services by distributing free sunscreen lotions to persons with albinism in some areas via the Tanzania Albinism Society and regional hospitals.
In Malawi, the government is supporting Low vision and skin screening clinics for learners with albinism in the districts. This program involves eye screening and the fabrication of appropriate glasses for learners with albinism. It also involves skin clinics that offer persons with albinism education on skin cancer prevention strategies, skin assessment and provision of appropriate sunscreen lotion as well as treatment and referral of suspected cases for surgery in tertiary health facilities. So far, over 1000 learners with albinism have been reached with ophthalmology services.
The Ministries of Health, Education and Sports, Gender, Labor, and Social Development in Uganda are primarily responsible for persons with Albinism. Uganda has taken steps toward addressing discrimination against persons with albinism, triggered majorly by the recognition of albinism as a form of disability by the Persons with Disabilities Act, 2020. The role played by civil society organizations has been instrumental in increasing awareness about albinism and promoting debate about equality and inclusion of persons with albinism.
In conclusion, the journey towards greater understanding and acceptance of albinism in the Eastern and Southern Africa region is ongoing and people are embracing diversity and inclusion. Through this, traditional myths and misconceptions are being broken down and people with albinism are slowly taking up their place in society. The efforts put in place by the government and civil society organizations on advocacy and awareness on albinism have greatly contributed to this shift in mindsets. UNICEF continues to support efforts led by the governments to ensure children with albinism access quality and inclusive education equally as any other child.
[1] https://thisisafrica.me/african-identities/myths-on-albinism/
[2] https://www.ohchr.org/en/press-releases/2021/07/witchcraft-killings-people-albinism-rose-during-pandemic-un-expert
[3] https://www.ohchr.org/en/topic/albinism
[4] https://www.ohchr.org/sites/default/files/Documents/Issues/Albinism/Albinism_Worldwide_Report2021_EN.pdf
