By Sam Eyoboka
FOUNDER of The Albino Foundation, Jake Epelle, believes Nigerians with albinism are on the verge of overcoming age – long social stigma and inequality, following the advocacy efforts of his organisation. The Foundation began operations on May 5, 2006, when he felt a strong urge to embark on an advocacy campaign to address several years of discrimination and stigmatisation suffered by albinos. Sunday Vanguard met Epelle at the foundation laying ceremony of the Olivet Bible Church, Festac Town, Lagos, where he fielded questions on matters relating to albinism.
I was determined to confront the abuse and disregard for respect and dignity of life that I have witnessed as a person with albinism; and ensure that no individual with albinism will have to go through same experience again.
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.’ With help from close family members and friends who are 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; and formulation of policies and parliamentary bills sponsorship to promote and protect the rights of people with albinism.
Looking back, after nine 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.
Specifically, what will you say has been the outcome of your advocacy?
Well, the Church is the hope for this nation, whether anybody likes it or not. As that relates to my community, the albinos, we have seen considerable result today. To the glory of God, Nigeria is the first country that is treating albinos with skin cancer for free. And history will be made on May 23-24 when Nigeria will the first country to give an agency to the community of Albinos. That will happen at the National Assembly when our bill will be introduced for public hearing and I am sure we will get the necessary approvals.
As we speak, eight ambassadors of different countries have given their word to follow us to the National Assembly for that exercise. So we are looking forward to that day and we trust God that it will be a reality. Unknown to a lot of people, God has used The Albino Foundation to write four policies in the country: The National Albinism Policy is the first in the world, The Special Education Policy, The Inclusive Education Policy and The National Eye Care Policy.
There was also a proposal you made to INEC for certain privileges….
Yes. It has been approved. As a matter of fact, I was with the INEC Chairman and I was used as the face of the flag-off of the Voters Registration Process a couple of weeks ago in Abuja. We made a request to INEC to institutionalise a preferential voting rights for persons with albinism including persons with other disabilities. It has taken us about two years to get that approval. What that means, I am 56, I have never voted, but now I will be given access to vote and leave immediately after; so that I don’t have to stand in the sun. I will be given a magnifier to see who I am voting for. It’s a privilege that, again, Nigeria is championing…I don’t think we will be the first, because it’s done in America. It’s a process where the vulnerable groups are integrated into the electoral process. I think it is a good thing that, for the first time, the vulnerable community will be given the opportunity to vote without any harassment or discrimination and leave the scene so that they are not vulnerable to the vagaries of weather or attacks.
Are you also looking to a day when you will sponsor members of the vulnerable community for elective offices?
We are already doing that. In the last political dispensation, a person with albinism was a lawmaker. We sponsored a young woman with albinism to Scotland and she returned with a master’s degree and currently works with the British Council. By my recommendation, she will be seconded to the Department of International Development, DFID, in the Federal Ministry of Education. As you know, education is our greatest passion. Last year, we had 140 children with albinism in school. This year, we have 70 and, by the end of this year, we’ll have 200 children with albinism in school. With education, we are on the pathway to success. When you are successful, you have money, and I can tell you the colour of money does not discriminate.