Emmanuel Chima is a black man with white skin. Apart from his delicate skin that burns under a scorching sun, he has very pale eyes that make seeing difficult for him. People call him and others with the same condition Albinos.
This condition made growing up torturous for the 56-year-old man. Despite existing legislation in Anambra, his state of residence, that frowns against unequal treatment of children with disability, he said he could not enjoy the luxury of going to school due to his condition.
According to Section 34 (1) of the Anambra State Disability Rights Law, children with disability shall be entitled to equal rights, treatment, recreation, maintenance and training with other children in the family.
“My parents hated me because of my albinism. They forced me to go to the farm like my other siblings even under the scorching sun. The sun burnt me mercilessly,” he narrated.
Today, Emmanuel suffers from skin cancer which he attributed to the unfriendly treatments from his parents. And he spends roughly N150,000 on drugs every month.
This is somewhat for someone whose business is on a steady downward trend due to his poor vision.
“Some people come here to spend counterfeit money because I am not seeing well. Before that is detected, they are long gone. Also, my fellow traders divert my customers to their shops,” he said.
Emmanuel is now plunged into indebtedness due to the costly cancer treatment and business misfortunes. But his business is just one of the many areas of his life that albinism is dealing with. His marital life suffers a more brutal blow.
“My first wife was childless for twelve years,” he said. “We went everywhere, no way. She wanted us to adopt, but I did not agree. She eventually left.
“They brought one pregnant girl for me to marry. She delivered a boy. She got pregnant again while with me and had a baby girl. After that, she became promiscuous, running after young guys. Eventually, she also left.
“Another one, a graduate, came and was of help to me. But, she was finally lured away.”
Albinism is a rare genetic disorder where a child is born with insufficient amounts of melanin pigment, a body chemical that determines the colour of a child’s skin, hair, and eyes. More than two million of over two hundred million Nigerians are estimated to be living with this condition, and in Africa, the prevalence rate is estimated at one person in 15,000 at the lowest.
Surviving in a society where understanding of albinism is still shallow is the greatest challenge confronting persons with albinism (PWAs). The colour of their skin, hair and eyes remain mysteries to many people. This provides the basis for misconceptions and myths which have aggravated the natural challenges their condition imposes on them.
Some people believe that an African woman who gives birth to a child with albinism has been impregnated by a white man, or has had the child replaced in her womb by demonic spirits. While some people think albinism is contagious, hence their resolute determination to keep persons with albinos at arms-length. The myths adversely affect the way the society relates with them and their mothers.
In many parts of Africa, there is a wide-spread myth that persons with albinism are the best human objects of rituals. This is premised on the claim that their body parts contain magical powers. All these undermine their freedom to take part in the socio-economic activities of the society, thus denying albinos several socio-economic benefits.
Edward Obichukwu, a 23-year old 200-level pharmacy student at NnamdiAzikiwe University Awka, is another pathetic narrative. He is a serial victim of verbal abuse, which often unsettles him psychologically and emotionally.
“It occurs randomly. Sometime I will be walking along and people just make jest of me because of my sight and colour. They say some crazy things. Imagine in the night stepping on somebody and that person flairs up –Are you blind? Are you not seeing at all? Such words hurt so much”.
However, Edward has a strong grip on his emotions and that has kept him going against all odds. “I have devised ways of living with the abuses. It’s not that it doesn’t bother me. I try to detach emotions from these occurrences so I can bear them.”
A very inspired hustler, he was admitted to study Biochemistry, an offer he did not like because of his dream for Pharmacy. Unsatisfied with Biochemistry, Edward set a goal to get a grade good enough to earn him Pharmacy. He is today offered admission into Pharmacy. Unfortunately, he is about to put his admission on hold.
“The first challenge is around finances and the second is my sight. My sight is bad. Just three weeks ago, I mistakenly lost the glasses that have been helping me. Although there are technologies that can help somebody like me to cope well, I can’t afford them.
“It’s difficult for me to continue studying Pharmacy. I can’t see the test tube and the calibration well. Pharmacy is full of practicals. I really want to do this and do it in a better way. I want to keep my admission on hold for a session to hustle for money,” Edward concludes in an emotion-laden voice.
However, Ifunaya Vivian Ogbonna, a wife and mother of one, presents an impressive narrative. She hails from a fortunate background in Nteje, Oyi Local Government Area of the state. However, that does not totally insulate her from the abuses meted out to persons from PWAs.
“During my primary school days, I had a separate seat in the front, very close to the board. And you know small little children, they would throw chalk, fold papers and throw at me. And when I stood up to go and show anything on the board, they would boo me – leave that place, you are blocking the board.
“In my secondary school days, the challenges reduced. My teachers at Marist Comprehensive Secondary School, Nteje, were very helpful. But, I won’t forget how one of them flogged me almost to death for not copying her note completely. I scored highest in her test but when she came to check the note, she saw I did not copy it fully. In my university, I didn’t have any issue. There, lecturers dictate and you write down. So, seeing the board was not a problem”.
Ifunanya is now happily married with a lovely daughter.
“Getting married was not a problem for me. I was somehow protective of myself. I did not allow many men to come close to me. The very few I allowed, before you know it, I got married,” she said.
“My husband has never used my colour against me. Rather, he has been supportive. Before we got married, he used to be the one to remind me to take good care of myself. I have a very fine baby girl. She is fair in complexion”.
The challenges of albinism are not solely borne by the PWAs themselves but also by close relations especially their mothers. Apart from social stigma, raising them is more demanding.
The arrival of Alex to a family of a dark-skinned couple,was a sad twist capable of breaking the heart. “I have never thought of giving birth to any child with albinism. I was at first surprised and confused,” the mother, Mrs Olisa Oge Udealor, recounted.
However, she resolved to take the bull by the horn. This helps to lay her worries to rest. “I was forced to read a lot about albinism and it helped me a great deal. I was able to wrap my head around it”.
The boy Alex, who will be six years old by April 2023, has remained a delight to the family and those around him. This actually was the desire of the mother.
“Children are a bundle of joy. So, when I had him, the first thing on my mind was how to take care of him, protect him and to make him feel okay and not to encounter any form of discrimination. I needed to make him special and to make people love him.
“From twelve months of age, I started to take care of his eyes. I make sure he doesn’t stay under the sun. It is zero exposure to sun. And if he must go out under the sun, he wears his face cap, long sleeve and sun protective cream. He has mastered those routines.
“It costs much to maintain him. But, to the glory of God, he looks good. He is smart and intelligent. Anyone who comes around him wants to meet him again,” she said satisfactorily.
Be that as it may, the proud mother is not totally shielded from the effects of the wrong societal understanding of albinism. Some people see it as a liability having albinos as children. They feel pity for their mothers. “I can’t really say what they have in mind. But, I have never gotten any ill treatment from anybody because of my child, though I get that pity look. But, I wave it aside.”
Why we don’t socialize – PWAs
Majority of persons with albinism are naturally reserved in terms of social interactions. This, according to those interviewed, is linked to the misconceptions and myths around their condition.
“If you are a woman of marriageable age, the family assumes that you don’t deserve a wealthy and handsome man. They give you out either as a second wife. They deny us the freedom to choose who to marry,” said Vivian.
“Somebody once asked me – if I touch you, will your skin pierce? He thinks that our skin is so fragile. A pregnant teacher once forced a girl child with albinism to the back seat so that the girl would change the colour of her unborn baby”.
“Another woman was about to take a bus and saw that a person with albinism is right before her and she said – no god forbid. How can I sit close to such a person? That is the society we are in.”
People with albinism are often discriminated against in the labour market. After written interviews, the victims said the oral interview which would cause them to physically appear before the employer is at their disadvantage.
“On sighting you,” one of the victims said, “they conclude you can’t deliver. Even if you scored higher than others in the written test, you are not given the job. Those who are lucky to be employed are paid far below their worth.”
The above is a contravention of section 49 (1) of the Anambra State Disability Rights Law which states that persons with disabilities shall have the right to work on an equal basis with others.
They suffer in silence
Despite receiving several complaints about various forms of abuse Albinos have been through, the Anambra State Albinism Association, a group of coordinated albinos in Anambra State, believes that several other cases are swept under the carpet. There is no data for reported cases while none of them has ever been prosecuted.
“The issue is that those who are being abused are not ready to speak up? Many of them are afraid that they will not get justice. Moreover, funding is a major problem. You cannot always find lawyers who will render their services probono”.
“In some cases, I go to the school. If it is a family, I speak with those involved because you still need to be careful about your approach so that you don’t end up making life more difficult for the person you want to help,” explained the chairperson, Vivian Ezeonwumelu, Anambra State Albinism Association.
Early graves through skin cancer
Section 46 of the disability rights law deals with right to health. Its sub-section says the government shall guarantee that persons with disabilities have unfettered access to adequate health care without discrimination on the basis of disability. Despite these provision and others, PWDs under the albinism cluster, are victimized by illnesses. The reporter saw gory pictures of members of the Albinism Association suffering from skin cancer, some of whom had died.
“This one is Ifeanyi Enemuo,” Vivian said as she took the reporter through the pictures on her phone. “He was my Deputy Director of Communication. He died November last year of skin cancer. This person is presently at Enugu taking his chemo. Chemo and radiotherapy are very expensive. He is a final year student battling to stay alive. We ensured his picture went viral. So, anytime he manages to get some money, he goes for the injection in Enugu.
“This other one is at the Teaching Hospital Nnewi presently. Her left eye is already covered with skin cancer. This poster you are seeing is for another of our member, Kosisochukwu Peter Igwilo, who died also of skin cancer in May this year and buried in July, at the age of 23. He was the only son of the family. Many of our members are down with skin cancer”.
We are seriously pleading to the government to help us deal with this cancer scourge in our midst,” Vivian concludes.
Are they really humans?
This is a question fueled by myths and misconceptions, which Vivian Ogbonna finds regrettable.
“We are all human. The difference is just the colour. Another difference is that persons with albinism are short-sighted. And I have seen a lot of black people who are also short-sighted. I had one in the university, Oluebube cannot see from here to there. And, she is black.
“All we need is for the society to do away with this attitude of when you see a person with albinism, you move away from them. Some won’t even want to enter keke or bus with them. They don’t want their bodies to come into contact,” Vivian condemns.
In an article titled Human Rights Dimensions of Albinism, the United Nations Human Rights Council, UN OHCHR, describes dehumanisation as the worst expression of discrimination against persons with albinism, which lays the foundation for horrifying physical attacks against them.
“Because some believe that they are magical beings or ghosts, they mutilate or even kill them so that their body parts can be used for witchcraft rituals,” the article reads in part.
“Dehumanising us is very wrong,” laments the chairperson, Anambra State Albinism Association, Vivian Ezeonwumelu. “It keeps us on our shelves. You find out that persons with albinism don’t like to socialise because of the way the people and society perceive us as if we are not human,”
Do they have legal protection?
Since albinism is viewed as a form of disability, all the laws and international instruments that promote the interests and protect the rights of the Persons With Disabilities (PWDs) also apply to persons with albinism. These include the Universal Declaration of Human Rights (UDHR) and the International Covenants on Human Rights, which in agreement with UDHR, proclaims that everyone is entitled to all the rights and freedoms set forth therein, without distinction of any kind.
The Convention on the Rights of Persons with Disabilities provides among others for 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 Nigerian 1999 constitution (as amended), in chapter four, prohibits discrimination against persons in all ramifications, and also gives every person an entitlement to respect for the dignity of his person, adding that no person shall be subject to torture or to inhuman or degrading treatment.
“Apart from the constitution, the disability rights law of Anambra State directly addresses the rights of persons with disabilities, in terms of access, employment among others to ensure they are carried along in everything,” said Ifiora Chukwudozie, an Anambra-based Human Rights lawyer.
Ifiora earnestly seeks increased sensitization which he believes will help the persons with albinism to fully understand the reliefs the law has provided for them.
“Sensitization must be intensified by the Joint National Association of Persons with Disabilities (JONAPWD), the albinism cluster and other CSOs. I have not been seeing them in all our interactions and engagements with the disability community. Let them integrate and get actively involved,” he advised.
Disability Rights Law lacks teeth
Perhaps the greatest regret for the persons with albinism in Anambra State is that the law enacted to protect their rights lacks the teeth to bite. The development is blamed on the failure of the Disability Rights Commission, inaugurated in February last year, to perform its statutory functions.
The Chairman, Joint National Association of Persons with Disabilities, JONAPWD in the state, Comrade Ugochukwu Okeke, regretted that the PWDs have not been able to enjoy the lofty provisions of the law enacted four years ago due to a particular lacuna in its section 6 (1), which makes the appointment of the chairman and members of the commission part-time.
“This provision seems to make the commission not to function as expected and we are pleading with His Excellency to consider making at least the Executive Chairman/CEO of the commission a full time member.”
For Vivian, the Chairperson, Albinism Association, the law is the biggest achievement of the past administration. The only problem is the enforcement..
“When a law is not implemented, it is just like a mere document,” she said. “Presently, the commission inaugurated to implement the law is not being funded”.
‘We are special, not mythical’
Despite the mythical misconception of persons with albinism, it is believed that things are better now than they were decades ago. PWAs believe the future will be better than today.
“My dad made the three of us living with albinism to know we are the best. He told us we are special because of our colour. That built me when I moved into the society,” Ifunaya Ogbonna says as she preaches love from the society to the PWAs.
“Most of the PWAs are very intelligent. All that they need is love. Tell them how special they are. When our family tells us we are special, nobody can change that in us.”
Acquiring deeper knowledge and better understanding of albinism is identified as potent enough to neutralise myths and misconceptions which hamper the freedom of PWAs. “Society needs to really understand albinism because a lot of things we believe about them are all myths,” Ogbonna said.