Sundaymail Editor
Disability Issues
Dr Christine Peta
TODAY’S article focuses on the International Albinism Awareness Day (IAAD), which is observed on June 13 every year.
It is important for all of us to take time to reflect on what albinism is all about, the progress made with regard to promoting the rights of persons with albinism, as well as raising awareness on the same issue.
The cause of albinism is a defect in one of several genes that produce or distribute melanin, which is the pigment that gives colour to the skin, eyes and hair.
Albinism is passed on if the gene is carried by both parents. This occurs even if the parents themselves do not have albinism.
The belief that close interaction with persons with albinism will result in others “catching” the condition, is, therefore, misplaced.
The United Nations states that one in every 17 000 to 20 000 people in North America and Europe, one in every 1 400 people in sub-Saharan Africa and one in every 1 000 people in Zimbabwe and other parts of Southern Africa, has some form of albinism. The high prevalence of albinism in Africa is linked to consanguinity (kinship that is characterised by sharing common ancestors). Tanzania has the highest number of persons with albinism in Africa.
Controversy also surrounds albinism, with some people arguing that the condition should not be regarded as a disability while others feel otherwise. The reality is that whilst it is a genetic condition, most persons with albinism also have some form of visual impairment.
That is so because melanin also plays a pivotal role in the development and function of the eyes. As such, little or nil production of melanin means persons with albinism generally experience low vision. Lack of melanin also increases the vulnerability of persons with albinism to skin cancer when they are exposed to direct sunlight. Research has indicated that few people with albinism live beyond the age of 40.
Nonetheless, the Government of Zimbabwe seeks to ensure life-saving measures are in place for persons with albinism. They include regular health checks, sunscreen lotions, sunglasses and sun-protective clothing. Slaying of persons with albinism is reportedly still common in Malawi, Tanzania and Mozambique, in scenarios where their body parts are used for ritual purposes. This is due to a belief that such parts can bring along career success, good fortune, wealth, power or sexual conquest. Great strides have been made throughout the world, including in Zimbabwe, with regard to promoting the rights of persons with albinism.
On June 9, 2021, the National Disability Policy, which clearly acknowledges albinism as a disability, was launched. The policy addresses the rights of persons with albinism in all facets of life that include education, health, economic empowerment, social protection and access to justice.
The 2022 National Population and Housing Census indicated that Zimbabwe has about 9 753 persons with albinism.
In addition, the Government takes cognisance of the fact that women who give birth to children with albinism are sometimes shunned, due to traditional beliefs that associate the condition with evil spirits, witchcraft and sleeping with white men or ghosts.
To enhance understanding of disability issues that include albinism, the Department of Disability Affairs has rolled out a robust awareness-raising programme on the rights of persons with disabilities.
Also, the Government has since implemented a number of the recommendations that were made at the 2016 Consultative Forum on Action on Albinism in Africa, which was attended by representatives from 26 countries, under the banner of the United Nations Independent Expert on Persons with Albinism. In line with provisions of the Constitution of Zimbabwe; the United Nations Convention on the Rights of Persons with Disabilities, which Zimbabwe ratified in September 2013; and the Sustainable Development Goals — 2030 Agenda, there is a need for all of us to join hands to ensure that persons with albinism are included in all human rights interventions.
Dr Christine Peta is a disability, public health, policy, international development and research expert. She is the national director of disability affairs in Zimbabwe. She can be contacted on: developafrica2020@ gmail.com
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