Exploring the experiences of persons living with albinism in Ghana

Abstract

Albinism is typically misunderstood, resulting in myths and misconceptions about the condition in different parts of the world. This study explores the misconceptions about albinism in Ghana through the lens of lived experiences of persons living with albinism (PLWA) and other relevant stakeholders to ascertain the level of socio-cultural exclusion. This study used qualitative methods and a purposeful non-probability sampling strategy was employed to gather diverse perspectives of information from participants in this study. The participants with albinism, their families, and experts were interviewed in semi-structured street interviews about their lives and the impacts of albinism on their human rights. The results revealed the extent of the suffering and denials experienced by persons living with albinism in different communities in Ghana. It reveals that due to certain misconceptions many PLWA were denied access to education, brutalised, killed, some lost their source of livelihood, and dehumanised. The study recommends that the government should organise intensive public education and health awareness in collaboration with civil society organisations to demystify albinism and promote the human rights of PLWA in Africa and Ghana in particular.

Keywords:

• People with albinism
• social exclusion
• lived experiences
• myths
• well-being
• Ghana

REVIEWING EDITOR:

• John Lee, Education University of Hong Kong, Hong Kong

SUBJECTS:

• Mental Health
• Education–Social Sciences
• Religion
• Indigenous Religions
• History
• Archaeology
• Cultural Studies
• Health Conditions

Acknowledgements

We hereby acknowledge the full permission and rights given to us by individuals and organisations whose names were mentioned or used in this paper to drive home different points and provide contexts to this study on the lived experience of PLWA in Ghana and elsewhere in the world. In addition, we acknowledge every participant who shared their experiences, insights, and beliefs about albinism in this study. The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors.

Disclosure statement

The author(s) have reported that there are no potential conflicts of interest.

Additional information

Notes on contributors

Andrew Kwame Daklo

Andrews Kwame Daklo, mentee under the second author. He studied and completed his Master’s programme in democratisation and human rights at the Centre for Human Rights, University of Pretoria. He conceptualised the study and conducted the data collection. He also shared his personal experiences in the original draft of the manuscript. He was part of the mentorship programme organised by the University of Pretoria that visits the University of Venda every year as part of the requirement for graduation from the Master’s programme. Dr. Olusegun Obadire is an active researcher and mentor at the University of Venda who contributed largely to the quality of the manuscript to the level it is now. He designed the methodology, formal analysis, visualisation, project administration, validation, provided resources, supervised and reviewed and edited the manuscript.

Olusegun Samson Obadire

Olusegun Samson Obadire holds a PhD in Rural Development with a background in Computer Science and Economics. He is an international higher education professional and currently the Director, of International Relations and Partnerships, University of Venda, South Africa. He is a certified UNESCO trainer for student training on entrepreneurial promotion and the leader of the CoP on student entpreneurship programmes at the University. He was a member of the Management Council for the International Education Association of South Africa (IEASA) from 2018 to 2020. He has more than 22 years of extensive teaching/research experience in the field of Rural Development, internationalisation of higher education, Entrepreneurship, and computing. Segun has continued to provide strategic direction to the internationalisation of the campus and curricula resulting in students acquiring global competence skills to adapt and succeed in a dynamic and highly interdependent global economy.