Albinism is a rare genetic condition where an individual, completely or partially, lacks melanin in the skin, eyes and hair. Melanin is the dark pigment that is mainly responsible for the coloration of the skin, eyes and hair. Therefore, the lack of melanin pre-disposes the people living with Albinism (PLWA) to other issues such as vision problems, skin cancer and skin infections.
As a result, many albinos die from conditions such as skin cancer before they are 40, especially when they cannot access crucial protective elements such as sunscreen and the wide-brim hats. According to the United Nations, this hereditary condition is found in one out of every 20,000 people around the world.
In Africa, this topic is of great importance given that the condition is more prevalent than in other parts of the world due to various factors. However, many people in Africa seems not to be aware of the term “albinism” (which isthe term that the people living with albinism prefer to be used), but nearly all of them have heard of ‘albino.’
This is just a tip of the iceberg of the many issues and challenges that the people living with albinism have to deal with. One of the greatest issues faced by ‘albinos,’ especially in many African countries, is not about the skin irritation from the tropical sun or the poor vision as many would think but is about the lack of approval from the society and support to deal with the condition.
The different African cultural beliefs have made the environment highly hostile for the ‘albinos’ and as some victims would put it, ‘it seems that they are worth more dead than alive given that they have to hide themselves away from the discrimination and violence.’ Research has actually shown that the many social institutions in the African Nations have not been well set up to handle the people with albinism and hence the slow progress in assisting them deals with the daily issues.
Some of the many challenges that they face include the high poverty levels, lack of a conducive learning environment, inadequate access to medication and medical care, prejudice, lack of community empowerment, and stigma. In addition, the people living with albinism have to deal with an inferiority complex due to the many mythical beliefs concerning albinos and misconceptions in Africa. For instance, in western Nigeria, they are barred from taking salt as a way of preventing pickles, while in some East African countries such as Burundi and Tanzania, they are hunted for body parts that are used for rituals.
They are also victims of rape due to the mythical belief that when an HIV-positive man
has sexual intercourse with an HIV-negative albino female, they will be cured. Children with albinism also have to deal with mockery from their peers, which leads to feelings of uselessness and rejection. These challenges mean that the ‘albinos’tend to be excluded
from the normal community activities and education and have limited opportunities for employment. Due to the many challenges faced by Albinos in Africa, there have been a number of initiatives from the local governments and international organizations to offer
support and enhance their living conditions.
For example, Advantage Africa’s project on Uganda was created to support albinos improve different aspects of their lives and their access to vision and dermatology healthcare services. In Nigeria, they have created the Albino Foundation to provide help to the members and train them on how to best manage their condition and access medical attention. In South Africa, the deputy minister of Arts and Culture launched an awareness campaign to sensitize the citizens about the attacks, discrimination, and stigma experienced by the people living with albinism.
The campaign encourages and presents all the Africans with a platform where they can be able to reflect on the violations faced by the albinos. Such campaigns throughout Africa have resulted in a better understanding and protection of the albinos. There are also programs in countries such as Malawi, Tanzania and Uganda to debunk the many myths and raise awareness of the albinos’ needs and their great potential in order for them to access employment, education and avoid abuse.
Tanzania and Malawi have also enabled laws to deter the discrimination and assaults against albinism, although this remains a great challenge. Non-governmental organizations such as the Same Sun (UTSS) distribute educational materials in different schools to dispel the common myths and raise awareness. Probably, due to the measures by NGOs and different governments, the number of albino deaths have been on the decline. However, much still needs to be done if the people living with albinism are to feel a part of the society and safe from any time of harm or discrimination.
To ameliorate the plight of the albinos in Africa, there is a need for more coordinated effort involving different medical professionals, social workers, public health advocates and human rights activists, government support groups and law-enforcement agencies, among others. By coming together, these groups can address the main issues and challenges, such as education on the prevention of skin cancer, prosecution of albino hunters and their sponsors, and discrimination and stigma denouncements.
All the same, Africa as a whole has made great strides in fighting for the rights of the people living with albinism, thanks to the efforts by the aid agencies, civil society and the governments. The people living with albinism are eager and hopeful that they will be well understood by their communities and accept them as they are. PLWA are like any other person. They only lack a pigment which affects the sensitivity of their skin to the sun and their vision, nothing else; they are just as ‘normal’ as anyone can be.
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