Albinism is a congenital condition characterised in humans by the partial or complete absence of pigment in the skin, hair and eyes. Albinism is associated with a number of vision defects, such as photophobia, nystagmus and amblyopia.
According to the BMC Public Health Research on Albinism in Africa, albinism frequency ranges from one in 832 to one in 1000 people in some selected population in South Africa. Many hold the view that persons with albinism must be excluded from society.
According to the United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism (UNIE on Albinism), the condition is relatively rare, non-contagious, and genetically inherited.
Mawunyo Kuma Yakor-Dagbah and Mawuse Yakor-Hamidu are persons with the albinism who have defied all odds to become auditors at the Ghana Audit Service, contributing their quota to the development of the country.
Born in Ashaley-Botwe in Accra but hail from Tavie Fe near Ho in the Volta Region, their very strong foundation was built on determination to excel and do exploits in life.
Mawuse and Mawunyo had to deal with significant stigma, discrimination, and social rejection due to deep-rooted harmful cultural and traditional beliefs and practices.
Childhood Experience
“Growing up with the albinism condition, my twin sister and I faced unimaginable challenges. We were constantly stared at, called names, and made to feel like outcasts. People’s reactions were crippling. They’d ask our parents why we weren’t kept indoors, hidden from the world. My mum would firmly respond, 'They have a life to live,” Mawuse, the older sister revealed.
“Our parents ensured that we were protected from health challenges, especially skin cancer. They educated themselves on albinism, understanding the sun’s harmful effects on our skin. They protected us diligently,” she added.
In Senior Secondary School, Mawunyo shared that finding a “School Mother” to accept them as “School Daughters” was traumatic. Most rejected them outright, but one eventually accepted to care for them. However, the experience left scars.
“This our God-sent school mother constantly reminds us of how fortunate we are to have her as our mother. The least provocation she tries to make us feel like some kind of object and a burden to her. The experience was bad,” they said.
Achievements
Fast-forward to present day, they are blessed with three children each and have a Postgraduate – Chartered in Forensic Audit, MBA Accounting, University of Cape Coast; Bachelor of Commerce, University of Cape Coast, and HND in Accounting, Accra Polytechnic.
Mawunyo has risen to the Assistant Director of Audit at the Ghana Audit Service. She currently holds the position as Deputy Branch Head-Ghana Audit Service Central Government Audit Department /Ghana Revenue Authority – Domestic Tax Revenue Division.
She was the first woman elected to lead the Ghana Federation of Disability Organisations since its establishment in 1987.
As a board member of the National Council on Persons with Disability (NCPD) she advocated for the implementation of the Persons with Disability Act, 2006 (Act 715) while liaising with various organisations to sensitise the public and advance disability issues at all levels in Ghana.
She is also a board member of many organisations including the Technical Committee for the Review of the Persons with Disability Act, 2006, (Act 715), Africa Albinism Network (AAN), Treasurer and Executive Committee for Commonwealth Disabled People Forum (CDPF).
Also, she was selected as the 1st Vice President of the West Africa Federation of the Disabled (WAFOD) where she collaborated with other members of the executive committee in supervising the running of WAFOD at the West Africa sub-regional level.
She held the position of National President of the Ghana Federation of Disability Organisations (GFD), a member, delegation of the Republic of Ghana Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) 12th Session, United Nations (UN) Headquarters, New York.
Mawunyo was also a Co-Presenter on the topic: Promoting Access to Justice for Women with Disabilities in Africa: The Case of Ghana, Commission on the Status of Women at the 59th Session, United Nations (UN) Headquarters, New York
Mawuse on the other hand is the immediate past Secretary for the GFD – Greater Accra Regional Branch, and currently occupies the position of Finance and Administrative Manager for the Ghana Association of Persons with Albinism.
African Albinism Network
Advocacy Manager in an interview, Kwame Andrews Daklo, highlighted that discrimination and stigma significantly affect individuals with albinism, often leading to a sense of isolation. Indicating, many individuals with albinism experience increased shyness and withdraw into themselves, making it difficult for them to express their thoughts and feelings in social settings.
Kwame Daklo further indicated that students with albinism have visual impairments and require specific accommodations, such as sitting at the front of the class or finding a suitable spot where they can see the board clearly. Additionally, teachers need to write in bold on the board and verbalise what they are writing to enhance understanding.
“Unfortunately, many teachers fail to provide these accommodations, especially when there is only one child with albinism in a class. They may feel they lack the time to cater to individual needs and instead apply a one-size-fits-all approach to teaching,” he said.
Kwame Daklo noted that the network has taken various capacity development trainings for leaders of albinism advocacy groups throughout Africa. The training includes skills in human rights advocacy, self-care, and mental health support, enabling them to effectively advocate for their rights upon returning to their home countries.
“Our goal is to ensure that individuals with albinism can live safely and with dignity in their respective countries,” he said.
BY Prince Fiifi Yorke