Albinos, “Afin” are derogatory names, instead call us persons with Albinism – Jake Epelle, TAF Africa founder

Amb. Jake Epelle is the founder and CEO of The All-rights Foundation (TAF), Africa, formerly known as The Albino Foundation. Jake Epelle through his advocacy efforts has created awareness on albinism related issues in Nigeria, Africa and Globally.

Also, he has urged against the discrimination and stigmatisation of persons with albinism thereby advocating for a society with equal opportunities and inclusion for persons with albinism. In this interview with Business Hallmark, Tumininu Ojelabi Hassan, which was held ahead of the World Albinism Day 2023, he stated the challenges he encountered while growing up owing to discrimination and stigmatisation. He spoke on the mental health issues affecting persons with albinism, general misconceptions about them, health challenges they undergo and the expectations of TAF Africa from the government.

Excerpts:

How have you coped with discrimination and what were the challenges you faced while growing up as a person with albinism?

First of all, let me correct this. Describing persons with albinism as albinos or people living with albinism is derogatory. The correct name to call us is persons with albinism. I will say my spirituality has helped me a lot to handle discrimination and stigmatisation. Of course, it gets to me but I have decided to pay less attention to it. Colour or Success doesn’t discriminate, once you are successful they will forget about your inadequacies. I do everything with an excellent spirit, which leads to an unprecedented result. Due to this, I don’t get much discrimination. However, it is not easy at all, especially for a typical person.

Discrimination starts from parents, siblings, family members and friends. Most of these things get to any individual. You have to learn to build a buffer around you. As a person with albinism, you are prone to discrimination, you don’t have to live in denial because it glaring. The best thing is to develop a coping mechanism. There are two sides to this, it’s either you stay and fight the discrimination or take a flight. It is a fight or a flight coping mechanism. Fighting or Running away from it doesn’t stop the discrimination. In some cases, the fight fuels the discrimination.

What motivated you to start The All-rights foundation Africa (TAF) Africa?

We started as the Albino foundation in 2006. I am a man of faith. I believe in God speaking to me, giving me instructions and leading me to do the right things. On 5th of May, 2006 which happened to be my birthday, I was uncomfortable. Then God told me, you know how much I have helped you in life, go and help others like you. Initially, I doubted if it was truly God or not. A few minutes after I got a call from a person with albinism, who was working at Oceanic bank. I had a ministry then, a christian outreach, oceanic back was one of our donors and the lady was in charge of this. I shared this vision with her but she discouraged me. I understood her point of view as we don’t encourage one another to congregate and this isn’t far-fetched. We used to walk away from each other., we believed everyone had their own issues to deal with. Before now, if you greet a person with albinism, they will snob you. Now that the foundation has created more awareness, it is better. Anytime I want to do something, once I face an opposition, it is an indication that it will be successful. Shortly after my conversation with the lady, I received a call from Mr. Ben Akabueze, the current Director General of the Budget office of the Federation, I told him what I heard from God. He said “this is of God, you have my support”. He encouraged me to go ahead. Within 30 minutes, I got a call from a journalist who writes for Punch, Success. I told him what I heard from God. Afterwards, he came to my office with a friend, Mr. Lawrence Ani, who was the Saturday Editor of ThisDay Newspaper then. I told Lawrence Ani my story, the discrimination and stigmatisation I faced while growing up. My story moved him to tears. Lawrence Ani wrote a three page masterpiece on my life story titled “Out of the Closet” published in ThisDay Newspaper.

During this period, God told me “In 20 days, I will take you around the world”. I was surprised, I thought it was the devil because how will I go around the world in 20 days, I thought it was impossible. BBC read the article in London and called me for an interview. BBC had me on their show and the whole world was calling me. What started with 10, 20, 30, 50 people from nowhere who came together, What started like a joke and like a mustard seed is now a known organisation in Africa.

How does TAF Africa deal with Mental Health Issues affecting persons with albinism?

Generally, this affects a lot of persons with disabilities. Many of us struggle with mental health issues. Discrimination takes a toll on a person’s mental wellbeing. I have gone through depression, many of us struggle with mental alertness. The worst are the ladies, some have gone ahead to commit suicide. The sad thing is that the government is playing ignorance and the people affected are playing ignorance.
As a foundation, we have introduced the subject in some of our workshop, this is captured in project designs and inputted in our advocacy. We have referred our community members to professionals to ascertain their mental health.

You said that you have gone through depression, how did you overcome this?

Most times when you are depressed, you won’t know. I didn’t know I was depressed until I noticed a change in my behaviour, I started having sleepless nights, I was overreacting to things and I wasn’t coordinated. When I noticed all these, I reached out for help, I spoke to a psychiatrist and a psychologist, they recommended medications. Also, I will say God helped me because relying on medication can be a problem.

What are the general misconceptions about persons with albinism?

It is countless. It starts with names. There is this name Yoruba people call us, “Afin”, it is a derogatory name. Some of them even say we don’t eat salt “Afin o jeyo”, this is a lie. I have heard people say persons with albinism bring good-luck, money, this is also a lie. These misconceptions affect our children and wives. People mock our wives, they ask questions like why did you choose this person? Sometimes they confront them, someone once confronted my wife. After this, they start feeling like hope they haven’t made a mistake and they bring this mockery back home.

What are the health challenges persons with albinism experience?

Skin cancer is our major problem. I am a survivor of skin cancer. It has killed many of us. As you begin to age, the manifestation is there. During the regime of Obasanjo, Yaradua and Jonathan, we were getting free treatment at National hospitals but they stopped it. It was tough during the Buhari regime and we haven’t heard anything from the new government.

This year’s theme for World albinism day is Inclusion is strength, what’s the plan of TAF Africa to ensure voices of people with albinism are heard in the country?

International Albinism Awareness Day is on Tuesday, June 13th, 2023. National commission of the persons with albinism supported us with fund and sunscreens for our community members. We are partnering with Nigerian Institute of International Affairs to ensure a robust inclusion program in the country and to ensure that persons with disabilities are included in every program in the country.

In what ways can government and relevant institutions in the country, put a stop to discrimination and stigmatisation of persons with albinism in the country?

The truth remains that any country or organisation that wants to integrate the most vulnerable must have a response plan that is inclusive, a robust project design that is inclusive and must bring persons with disabilities together to discuss their issues and find solutions. My foundation (TAF Africa) is known for disability advocacy and awareness.