Life as Albino – Jake Epelle

Founder of the Albino Foundation, Jake Epelle has been a strong advocate of albinism in Nigeria and beyond. From the beginning, his vision was to stop the social stigma encountered by people born with albinism. He keeps stressing that Albinos are human beings and not ghosts. According to him, the stigma and ostracism he encountered growing up propelled his campaign on albinism and today, he is a force to reckon with. Speaking with Effects recently, he talked about albinism voting rights for the first time en-masse, his growing up and others.

What are you up to in recent times?

There are projects I’m working on. But the dearest projects to my heart are two. One is the European Union-funded disaggregated program with persons with albinism. For the first time, I think we are the first country in Africa that is embarking on the holistic data gathering, knowing not just the number of the persons with albinism but with different categories of persons with albinism. That to me, is the pet project, the importance of it played out when I addressed the European Union parliament. It was adopted as the best practice project that should be done in all African countries by the European Union delegation.

Another is the framework we are developing for INEC to mainstream persons with disability into the electoral and political space in Nigeria. That also to me is a very important project. For instance, at 57, I’m going to vote for the first time in an election.

Why?

Because the atmosphere was not conducive for us to vote. I didn’t want to go and stand in the sun and get burnt for 10 minutes because there were no processes of making new votes and go. So, we pushed until we got the special voting rights that allow persons with albinism, persons with disability to vote easily. The framework we developed will help INEC understand not just the numbers of eligible voters, but where those numbers are and that is the unique thing about the project we are doing right now.

It allows INEC to know, for instance in Lagos, where there are concentrations of persons with albinism, concentrations of people with physical disability, or clusters of persons who are blind. INEC could now deploy the right material required in that given polling unit. It’s very unique. Those are the kind of things that we are doing right now.

There are other ad-hoc projects like mainstreaming persons with albinism and persons with disability into the education system through the inclusive education policy which I drafted.

How was the struggle at the beginning?

With God on my side, little education and less than an average income and no hands-on experience in the social sector, I launched the foundation whose vision is a society with equal opportunities for persons with albinism. I was determined to confront the abuse and disregard for respect and dignity of life that I had witnessed as a person with albinism; and ensure that no individual with albinism would have to go through the same experience again.

With help from close family members and friends who were sympathetic to my plight, I stepped out to achieve the foundation’s mission. I took a hard swipe at the untold challenges of people living with albinism—in Nigeria, Africa, and the world in general—and summed them up into five thematic areas:

• Negative social issues linked to discrimination, stigmatization, and stereotypes.

• Lack of adequate healthcare for skin cancer and visual impairment.

• Lack of qualitative education and reasonable accommodation of the needs of people with albinism.

• Need for economic empowerment by providing entrepreneurial and skill-set development.

• Formulation of policies and parliamentary bills sponsorship to promote and protect the rights of people with albinism.

Looking back, after years of hard work, commitment and determination to see attitudinal change within society, focused policy drive and mainstreaming of albinism into various government programmes and projects, I can beat my chest and say that the present and future generations of people with albinism will never be the same again.

Most Albinos have patches on their body and don’t display confidence traits as you. At your age you look good, what would you say has been your striking force?

This question was put to me in Banjul when we went for an African Union meeting. A South African actually asked me that question. If I open up and tell you my story you will be amazed. It’s absolutely God. Secondly, this is what I say to people: hang around those who love you. Like me, you don’t see my disability you see the strength in me. Now, you are telling me about this strength. This strength further emboldens me to be courageous and confident.

Ultimately, you have God because it’s only God that instills confidence in an individual, especially an individual that the whole society expects shouldn’t have had confidence. I can’t attribute whatever I am to anything more than God who is my father that loved me with all my faults. Then the right people around you and the right spouses. My wife sees me as a hero. She doesn’t believe there’s anything I can’t conquer. My staff are my best friends. I have 17 staff that support me in every area of my life. I also have friends who believe in me. I have eight ambassadors in this country who, all I need is just make one phone call; they would come to my aid one way or the other.

I advise you: stay around people who love you, believe in God and believe in yourself. Never think that anything is impossible. I don’t have that mindset, to me, everything is possible. If I say I want to cross the ocean, I will cross the ocean because I know God is with me.

Who influenced you growing up?

My dad. He saw the best in me. My dad was telling me I was the first, first, first position in the class when indeed I was 15th position. Because I wanted to live the picture he painted in my heart, I saw myself in first, second and third position in class. I never failed in that bracket.

I attended public schools and indeed had a hard time with seeing the blackboard: I had to go close to the blackboard amidst teasing and derogatory name-calling and even sometimes insults and assaults by both the teachers and students alike.

I grew up in a fairly large and average polygamous family not knowing that I was born with albinism. My early infancy days were characterized by teasing and taunting by family members, childhood friends, and schoolmates. On the other hand, I found solace in my father and stepmother who took great care of me and showed me incredible love and affection. So, people who also believe in you, who see what you don’t see can push you into where you ought to be. Also, read, expose yourself, find what you feel will work and work on those things. Ultimately, try to hear from God.

What lesson has life taught you as a person?

First, that everything is possible with God. Secondly, work hard but work smart or balance both. I just told you for the past six weeks or more I have been virtually living in the air. I just came back from Japan—it’s 20 hours of flying. Research what you feel you should know. Research and get the right information. When you open your mouth people should hear something different, not what they are used to hearing. Learn to celebrate people. You must find the good things in people and celebrate them.

You are stylish, what is your kind of style?

I take my time to shop. I don’t buy my clothes until they are on sales. But again, sense of style and colour is very important when shopping. How you combine your colours is necessary to come out stylish. It doesn’t have to be expensive but put your money in it.

This was culled from an interview he did with The Sun Nigeria 7 years ago.