By: Chidalu Glory
Albinism is a genetic condition characterised by a decreased production of a pigment called melanin in the eyes, skin and hair of and hair of an individual. Statistics show that more than two million persons live with albinism (PWA) in Nigeria but just a few of them are privileged to have the basic amenities of life. Some struggle to get educated and are unemployed because it is believed they are not fit to work while children with albinism are bullied and discriminated against in schools.
Judging from their poor eyesight, an effect of their health condition, priority is not given to them in schools for better understanding and access. Mr. Rapulu Samuel a filmmaker, an albino in an interview with this reporter explained how he was made fun of while growing up.
“When I was growing up, I had friends who played pranks with my condition. I can not stay long under the sun and I have to bring objects close to my face to see. I have people who would say nasty things about my colour to piss me off. I have a lovely family and my dad would always fight for me whenever an adult tries to abuse me.” Rapulu Samuel is an alumnus of Nnamdi Azikiwe University Awka who graduated in 2014.
Surviving in a society where the knowledge of albinism is relatively little remain a challenge for persons living with Albinism (PWA)
The colour of their eyes, skin and hair, a mystery to many, has brought about different myths including the belief an African woman who gives birth to a child with albinism has been impregnated by a white man or the baby was bewitched in the stomach. Some think it is contagious and stay away from people with albinism, while others believe persons with albinism are sterile, have a slim chance of making it in life or are being punished by the gods.
The lives of these albinos are also at risk as in some parts of Africa, as it is believed that albinos are best used for sacrifice. “Albinos are not special. They are like normal human beings, they breathe the air you breathe and eat the same food you eat. The only difference is the lack of melanin in their skin.”
Mr. Rapulu Samuel recounted how during his teenage years, girls begged to have sex with him because they believed sexual intercourse with an Albino might make them less-dark in complexion. As a result of these myths, some Albinos experience withdrawal syndrome.
Some content creators are greatly contributing to this stereotype and myth against albinos in Nigeria by the kind of content they create with scenes that suggest them as blind, dumb, unintelligent, weak and ‘fake oyibo’ in the mainstream media.
This caused Rapulu Samuel, a filmmaker and albinism advocate to work towards producing movies that tell the right stories about albinos. In his words, “As an albino, I like to talk about my experiences, every year I organise public debates on albinism where I bring people to dialogue. It started when I was in Awka. We talk about albinism, what causes albinism and how we can help people with albinism to live better. We decided to shoot a movie on albinism, it will be in cinemas on September 1st and by November should go on Netflix. We featured Nancy Isime, Mercy Aigbe, and Arinze amongst others. We talked about skin cancer and how early detection of it can save your life. It also addressed the social discrimination and physical abuse they face”.
It is worthy of note that some of the laws that cover PWDs cover PWA too. They include the Universal Declaration of Human Rights (UDHR) and the International Covenant of Human Rights. The Convention Of The Rights Of Persons With Disabilities provides among others respect for inherent dignity, non-discrimination, full and effective participation and inclusion in society as well as respect for difference, equality of opportunity, accessibility and acceptance of persons with disabilities as part of human diversity and humanity. The 1999 constitution of the Federal Republic Of Nigeria prohibits all forms of discrimination and inhumane treatment of all forms.
Despite all these laws aimed at protecting albinos in Nigeria, enforcement is a huge problem. The law lacks the power to prosecute and punish offenders.
Albinos face double disability in Nigeria in terms of employment. The labour market does not favour them. They are often considered incompetent and unqualified. This makes it hard for them to earn well to take care of their skin. Their skin limits them as they can not work in any type of organization.
Mr. Rapulu Samuel recounted how he was denied employment as an intelligent agent in the police force because his colour makes him stand out and it is dangerous for him because of this, he had to change his career path.
On the flip side, he exposed some of the benefits of being an albino. For him, he used it to his advantage by equipping himself with skills and knowledge. In his words, “I am smart. When people see me, the first thing they see is a smart person. If you are a person with albinism, anywhere you go, you are going to stand out. Albinism gives you attention and if you are smart, people are going to listen to you”
“If you develop yourself and can solve a problem for society, people are going to look beyond your skin and look at your talent”
PWA’s are prone to skin cancers due to poor or little melanin in their skin. Applying sunscreen lotions helps to reduce the harmful effect of the sun on PWA skin. However, these lotions are expensive and often not accessible to PWA.
The government should provide free sunscreen lotions and access to free eyes and skin checks for PWA. “If you want to live long as an albino, stay out of the sun” Mr Rapulu Samuel beseeched.
Also in an interview with the State coordinator of Anambra State Albinism Association (ASAS), Ben Orizu Israel, communicating the challenges the organization faces noted it to be the issue of their members or individuals with albinism failing to understand and believe the challenges that have to do with albinism.
Also, he spoke on lack of funds which is one of the major problems. Another challenge they face is most albinos refusing to identify with their situation. Most of them believe they do not have to join the association. They feel they can take care of themselves with or without the help of the organisation. He mentioned that their refusal to belong to the organisation has led to different challenges because most of them are not aware of one of their greatest challenges which is the ultraviolet rays (UVR) which could lead to skin cancer.
According to him, he is currently taking care of a PWA with skin cancer and it costs a huge sum of money. Sadly, the organisation buried 12 persons last year due to skin cancer and one of them was an executive of the organization.
Some of their success stories include raising funds for PWA to start businesses, persuading the state government to allow students with albinism to wear long sleeves to school and the enactment of Anambra State Disability Law which was enacted by the former State Government.
Also with the Enactment of Disability Right Collision, an office was created for PWA in the state office. This organisation has enlightened PWA on better ways to live, especially limiting exposure to sunlight and has used different media houses to reach out to people.
This report is supported by the Platform Times Investigative Journalism Foundation, as part of its DISABILITY RIGHTS AND INCLUSION Project.
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