Access to information for people with albinism: Issues, challenges and resolutions
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Date
2021
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Abstract
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and eyes. The difference in appearance between pigmented people and those with albinism is often the object of inaccurate and harmful beliefs about the condition. These beliefs are fuelled by myths, lack of knowledge and understanding. In recent years, it has cost people with albinism (PWA) severely with the mutilation of their body parts and killings in some countries in Africa. PWA challenges include discrimination, stigmatisation, derogative naming, skin cancer, visual impairment, rejection, and social exclusion in fundamentals such as healthcare, education, and employment. Also, access to information remains a challenge to PWA due to poor eyesight and myths associated with the condition, making it difficult for society to openly discuss albinism issues and share information with those in need. The study explored PWA’s challenges, parents of children with albinism (CWA) and organisations that serve PWA in Khomas region Namibia when accessing information. The researchers adopted the interpretivism paradigm and employed a qualitative approach. Data was collected through individual
face to face interviews with all the participants. Sixteen participants, both male and female, took part in the study. The fi ndings show that PWA encounter problems when accessing information. These include lack of awareness of information sources coupled with poor eyesight for PWA and reading of information in small fonts that are not provided in alternative formats. The immediate sustainable
resolution is delivering inclusive information services that avail health information in multimedia formats to accommodate people with challenges such as visual impairments and other forms of impairments. Although far-fetched, a change in mind-set and negative attitude to PWA, especially in Africa, is critical.
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Keywords
People with albinism, Challenges
Citation
Ngula, A., & Bitso, C. (2021). Access to information for people with albinism: Issues, challenges and resolutions. In C. Mnubi-Mchombu., Nengomasha, C., W. Uutoni (Ed.), Proceedings of the 24th Standing Conference of Eastern, Central and Southern African Library and Information Associations, pp. 52-62.