Isiaka Wakili
7 September 2008
interview
Mr Jake Epelle is the Founder and Chief Executive Officer of the Albino Foundation. In this interview, not only does he speak on major challenges confronting albinos in Nigeria, but also clears some myths associated with albinism. Excerpt:
How do you feel being an albino?
Being an albino is great and I feel very happy and comfortable being one. I know that God created every human being for a purpose, and I am grateful to him for making me an albino and I have no regret whatsoever.
Many regard albino as bearers of bad luck.
It is absolutely lie! There is no bad luck associated with us, and of course, albinos are the most favourable human beings I have ever seen.
Albinism is said to be hereditary. Are your parents albinos? And how many albinos do you have as children?
My parents are not albinos and neither are my children. I don't want to argue with the scientists that albinism is a kind of hereditary condition which they have attributed to the lack of pigmentation in our skin. But I can tell you that God has a purpose for creating albinos, and He has not made any mistake about that. Being an albino is divinely orchestrated. I stand on what God says that he has created all things beautiful and wonderful. There are many issues now that are proving scientists wrong. For instance, they say that albinism is a disorder, forgetting that God has something in mind for creating albinos. If they say albinism is a disorder, what happens with people that start losing pigmentation, not at birth, but as they are growing? These are people with white spots. Scientists don't know why this happens. There is albinism in plants, mammals, snakes, and others. So, when people say lack of pigmentation in albinos' skin is a disorder, they are simply saying that God made a mistake.
How would you describe your growing up as an albino?
It was very tough and challenging! I was abused, mistaken and taken advantage of. Growing up from home to school and gatherings was difficult to a point that I began to ask myself why people saw and reacted to me that way. It created a lot of stigma and unanswered questions. It posed threats in the areas of education and relationship. I found it difficult to have friendship with other children. Everything around me proved negative. Even in class, teachers made mockery of me, while my classmates made derogatory statements about me to the extent that I became a subject of derision. So, growing up with that kind of rejection, animosity and bitterness was a very serious challenge.
Was getting married tough too?
For me, it wasn't, but for many other albinos, it was and it still is. It is tougher for female albinos to get husbands. Lately some female albinos who managed to scale through and get into relationship just woke up in the morning and discovered their husbands had gone (divorced them). Sometimes, you don't blame the men; it is due to the society's pressure.
Was there any situation that made you lost hope as an albino?
Several! But God has always given me hope to forge ahead in life to see every day as an opportunity. I get worried about how to pay the salaries of the staff of the Foundation which runs to about N300, 000 in a month. And at times, I feel like closing the office down completely, but God has been assisting me.
Is it true that albinos must not take salt?
It is a lie and a fallacy! It doesn't have any medical or traditional basis. It is just a global myth which cuts across. This issue came up in different conferences I attended in America, Australia, London, South Africa, among others. Parents who don't allow their albinos to take salt at all are only breeding deficiencies because even as albinos, we need iron most which comes from salt. So, disallowing albinos from taking salt can create more problems.
It is also believed that albinos suffer from vision impairment especially during the day.
The rousing of the oscillation of our eyes makes it impossible for us to really focus on objects. It is however not true that albinos see better at night. In fact, when you put an albino in darkness, he is lost. People who are not albinos would do better coming out of darkness than albinos would do. Albinos need to be in an environment where there is more light to operate effectively and efficiently.
What major challenges confront albinos?
Health-wise, there is a challenge because we don't walk around in the sun like every other person. We also don't see from afar. We also face the problem of abuse from siblings who always feel no one would marry us. Also, some of the parents of albinos are not wealthy enough to send them to school and those who are lucky to be sent to school tend to drop out owing to the vision problem. The name calling also affects albinos morally and psychologically.
You were quoted to have asserted in a national daily that about 99 percent of albinos are denied employment in Nigeria. Could you substantiate this?
It speaks for itself. Most employers reject albinos even when they are qualified for the job, and that is why we are now condemning the reports we have received from the on-going recruitment exercises by organisations like Police, Customs, Prisons and Immigration and Service where qualified albinos have been rejected. If they feel that albinos cannot do certain jobs, what about administrative and clerical jobs? Albinos can also do well as Public Relations Officers.
How do you hope to tackle this job discrimination?
We are taking the case to the Presidency and copying all those in positions including the Nigeria Labour Congress and Minister of Labour. We are only waiting for the concrete evidence of people who applied for jobs and were rejected based on their skin colour. I am prepared to go to court with the army, the police and all other government agencies involved in this kind of discrimination not only against albinos but also against any physically challenged person.
What informed the creation of the Albino Foundation?
The Albino Foundation is a non-governmental organisation set up in May 2006 to tackle the challenges facing albinos by formulating policies that would proffer solutions to all these challenges.
How is the Foundation funded?
We get donations from corporate bodies and individuals, but of late, we have not been getting such donations. The Federal Ministry of Health has done its best by sponsoring some of our programmes, though it has never given us cash. The Federal Ministry of Women Affairs has given us something. But compared to the challenges we go through in the Foundation, what we get is nothing to write home about. I have, by His grace, been carrying the financial burden of the Foundation.
In what other ways does the Federal Fovernment support the Foundation?
We have series of meetings with the government. Last year, we met the Chief Medical Directors of all the Teaching Hospitals in the country and it was agreed that they would be treating albinos with skin cancer at no cost. So far, so good, the National Hospital, Abuja, has implemented that directive more than any other hospital.
Of what need is the setting up of albinism registry being advocated by most albinos?
Albinism registry is very important because it would tell us the number of albinos in the country, those that are being born and those that have died and of what. Currently, there are over two million albinos in Nigeria. If we have the albinism registry, all albinos would be registered and their challenges identified.
Do you know of any albinos in high places?
Some albinos have been given some good appointments. For instance, the deputy ambassador to Brazil, Uche Umezeoke, there is a retired ambassador to Netherlands who is an albino. There is also a top public officer in the Federal Ministry of Labour. But despite the fact that a lot of albinos are qualified to hold sensitive positions only about 0.5 percent have got these opportunities.
Is there anything like Albinism Day?
Not yet. But we are trying to set up Albinism Day from our national conference which takes place between April and May of every year. We hope that the Federal Government will pick up a day and recognise it as Albinism Day. We are also hoping that the international organisations like the United Nations, European Unions and the African Union will adopt and declare a day as Albinism Day.
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