‘Albinism Can Be Prevented’

Richard Kelani, a legal practitioner and former Vice President, The Albino Network Association, in this interview with Helen Eni, recalls his childhood experience, research efforts, and the need for government to curb stigmatisation of people with albinism, among other issues. Excerpts:

What does it mean to be an albino in Nigeria?

When you call somebody an albino, it is like saying this is a cripple. It is discriminatory; it is part of the stigmatisation. So we prefer to be described as persons living with albinism. Talking about the social dimension of albinism in Nigeria, the albino child actually enjoys a lot of affection from adults around. Everybody wants to protect him or her. But in communities where people have developed fetish disposition they can be hunted for rituals. In Yoruba land it used to be very bad. Maybe I am not too educated about Yoruba mythology concerning the albino person. But normally they call the albino person eni orisa or nkan orisa. To me that means somebody that belongs to the gods. If you belong to a deity, it is either you are dedicated to the deity or you are used as sacrifice or reserved for use as sacrifice to the deity, or a potential priest of the deity or a servant on its altar. Some people still hold such beliefs, but the practice of using persons living with albinism as sacrifice for rituals has reduced. I think it has to do with crossing of beliefs. Some believe that if you harm a person with albinism, you are evoking the wrath of the deity he belongs to. There is a Yoruba proverb that says, owo orisa ni a fi nwo afin, that is, the respect and honour we give to the deity is the same we extend to the albino person because of the belief that they belong to the gods.

Did you experience any discrimination while you were growing up?

Most people living with albinism experience stigmatisation and discrimination. While adults are sensitive to the feelings of children living with albinism, the children with normal colouration do not understand why we are different. So they will sing songs to mock you. For a child, that can be nerve-wrecking. I used to get angry and I would run after the person to fight him. While doing that, another one will pick up the insults and I would run after him. I had to develop self-control beyond the level of my mates because of what I was going through. Every time I would look at myself in the mirror and ask God why he created me this way? The torment from other children was too much for me.

But I observed that the parents of these children never called them to order; they felt it was good entertainment or comic relief for their own children. Some of them will laugh instead of cautioning their children. They didn’t understand that they were giving me the nightmare of a lifetime. Such tormenting moments used to fill me with sadness. I would go to the mirror and begin to ask God why he made me different from others. Sometimes I would be angry and begin to ask God what did I do wrong? Over time I stopped questioning God and began to accept the reality.

In school, some teachers didn’t understand our challenges. But one particular teacher in my Pry four, Mr Akarueze, now late, realised I had low vision and brought my seat to the front so I could be close to the blackboard. Other teachers never noticed my challenge but Mr. Akarueze did and tried to assist me by bringing me to the front. But what he did exposed me to more embarrassment because pupils from the other classes took advantage of that. That position made me easily visible to other pupils who passed through the corridor. They would beckon on others to come and look at me. In primary five I depended on my friend, Ashiru, who sat beside me to read what was written on the blackboard and I would write it down. It was quite a challenge but I left primary school as one of the best students in school. In my secondary school, I was also the best student. At Igbobi College I was the best student in Arts and I collected two prizes. But in the University (University of Ife, now Obafemi Awolowo University), I came out with Second Class Lower (2/2) because during examinations I used to develop ulcer and it made my reading difficult. The ulcer was related to my not having money to feed and not because of the albinism. I used to go hungry in order to save the little money I had.

Can albinism be prevented?

It can be prevented. To have an albino child, both parents must actually have the gene that leads to albinism in them. There are certain tests that can be done to determine if an intending couple have the gene and if they have, the possibility of having an albino child or how to reduce the chances of having an albino. Just like couples who have AS blood group, they have an enhanced possibility of having a child with SS. So they can determine if they want to go ahead with the marriage and take their chances. Albinism can be determined that way but the level of scientific information is not as high as the one of blood group. Checking the traits in parents in terms of albinism is still an ongoing issue.

Reports say skin cancer constitutes 80 per cent of the health problems of people living with albinism. Why is the percentage still high with all the wealth of knowledge available?

Indeed a lot of research has been done on skin types and the effect of sunrays on the skin and on the eyes and how these things can be prevented. The sun is very damaging to the skin and many people living with albinism have died of skin cancer. This is due to ignorance and that is why we are doing a lot of campaigns to create awareness among ourselves on how to take care of our health. A lot of studies are going on, even concerning the eyes. For now there is no real help by ophthalmologist and eye experts. All they do is to tell you to wear sunshade. I wasn’t wearing shade before due to ignorance. By the time I got to know about it, my eyes had been affected by the sun because continuous exposure to the sun will force one of your eyes to shut down because it can’t take in all the sunrays. So the other eye will be put under severe pressure. Over time, you’ll discover that the eye under pressure will deteriorate. The other one that is shut will not be cooperating with the other eye, so you’ll have a condition called cross-eyed. These are just normal biological issues concerning people with albinism.

What are your expectations from government?

First and foremost, government should, on continuous basis, work on improving social acceptance of persons living with albinism through creation of awareness, educating people against taunting and mocking PWA. There should be an empowerment programme for PWA to enable them earn a living without hawking and exposing themselves to the damaging effect of the sun on their skin and eyes. Government should set a good example to other employers of labour by appointing PWA into sensitive positions. The society should stop treating us like inferior beings.