Society should celebrate people when they excel, which will in turn motivate them to do more for the benefit of humanity.. Life is full of ups and downs so we should salute those who have overcome extreme difficulties. Their stories must be told to motivate others to move forward with determination. Their stories inspire people to aspire before they expire. In this piece, I will tell the story of Mawunyo Kuma Yakor-Dagbah (hereinafter called Enyo Yakor). She is a Ghanaian woman with albinism. She hails from Tavieƒe near Ho in the Volta Region. Enyo Yakor and her twin sister, Mawuse Yakor -Hamidu are Auditors in the employment of the Ghana Audit Service. Her story unfolds in two successive episodes. This is Episode 1.
What is Albinism?
Albinism is an inherited genetic condition. It is a rare genetic disorder that reduces the amount of melanin pigment formation. Melanin is the pigment that accounts for the colour of human skin, hair and eyes. In essence, dark-skinned people have more melanin in their skin than light-skinned people. Melanin formation in the body also depends on specialized cells called melanocytes. The sun serves as a catalyst for melanocytes to produce more melanin. The melanin produced protects the skin against damage by the sun. Albinism is no respecter of race or ethnicity. It is empirically established that approximately one in 18,000 or 20,000 people in the United States have some type of albinism.
People with albinism (PWA) suffer from medical conditions such as vision problems that cannot be corrected with lenses. This is attributable to malformation of the retina and abnormal patterns of nerve connections between the eye and the brain. While the degree of vision impairment varies with the type of albinism, people with albinism are generally considered legally blind. They usually have a visual acuity of 20/200 or worse. Nevertheless, some of them are able to read, ride bikes and even drive without much difficulty.
Due to the low melanin in their system, people with albinism (PWA) equally suffer dermatological conditions including but not limited to skin cancer. They therefore have to seek protection from the sun rays by wearing sunshades, sunblock hats, sun-protective clothing and using sun lotions. It is considered derogatory to refer to PWA as albinos. The acceptable reference is PWA or you can simply address them by their names or social titles.
Types of Albinism
There are different types of albinism. Notable among them are:
- Oculocutaneous albinism (OCA), which affects the skin, hair, and eyes. OCA has several subtypes.
- Hermansky-Pudlak syndrome: It is a rare form of albinism resulting from a defect in one of eight genes and its symptoms are similar to those of OCA. However, it is associated with lung, bowel and bleeding disorders.
- Chediak-Higashi syndrome: This is also a rare form of albinism. Its symptoms are similar to those of OCA but it may not affect all areas of the skin. It leads to blond or brown hair with creamy white skin.
- Griscelli syndrome: This results from a defect in one of three genes. It occurs with albinism but the entire body may not be affected.
Social Considerations of Albinism
Globally, people with albinism have been discriminated against to the point of death threats or even death. In Tanzania for instance, Ghanaian undercover investigative journalist, Anas Aremeyaw Anas exposed people who hunt down PWA and use their body parts for rituals. Anas’ film, The Spell of the Albino fortunately led to the arrest of some of the culprits.
In most parts of the world, there are some strange beliefs or myths about albinism. PWA are mostly isolated due to misunderstanding of the condition. The stigmatization against PWA even destroys marriages due to accusations of infidelity against women who gave birth to children with albinism.
Enyo Yakor growing up as a child with Albinism
The discrimination against the twin sisters with albinism (Enyo and Mawuse) started from childhood. People hooted at them, referring to them as Ofiri Djato; people refused to take pictures with them because they would be mocked for having such pictures. People even avoided sitting close to them on public transport.
The twins have two brothers; one with albinism, and one without. When their second brother without albinism was born, there were derogatory and hurtful comments to the effect that their parents had now given birth to a “proper” child. In addition, and somewhat incongruously, he too was stigmatized because there were disrespectful and doubtful comments about his paternity.
Enyo Yakor and her twin sister went to the same schools from primary to tertiary and were classmates throughout the period. According to Enyo Yakor, seniors were reluctant to accept them as school daughters in senior secondary school; and most outright rejected them. One senior finally accepted the two of them but that entire experience was very traumatic. In her view, such discriminatory situations often results in PWA dropping out of school.
It was as though they were less human than others. One wonders how skin colour can make anyone less human. We often speak out against racism against black people yet even within the same black race, we discriminate against PWA.
Enyo noted that the experiences over the years have rather made her strong and she is seldom demoralized anymore. In fact, she does not even feel her skin colour is different from others until she is called by the albinism condition. Another challenge they had in classrooms was their inability to see clearly inscriptions on the boards. As indicated earlier, the eye problems that come with albinism are impossible to correct with medicated lenses.
Globally, PWA are victims of various superstitions and infanticide (they are killed when they are infants) mostly in developing countries. They suffer marginalisation and social exclusion thereby by affecting their academic and other productive endeavours. All of these conditions create a chronic state of unemployment among PWA.