‘Our greatest health challenge is skin cancer’

How long have you been running the foundation?Albino Foundation started 2006, with 11 people in Lagos, and today we have 42 chapters across the country.What have been the challenges?The first challenge was getting the albinos to agree that they do have issues. Many of them ignorantly feel they don’t have a problem, which to me […]

How long have you been running the foundation?
Albino Foundation started 2006, with 11 people in Lagos, and today we have 42 chapters across the country.
What have been the challenges?
The first challenge was getting the albinos to agree that they do have issues. Many of them ignorantly feel they don’t have a problem, which to me is self denial.
The second is identifying the major issues, like skin cancer, lack of education, lack of policies that protect them and economic empowerment. As a foundation, we articulated the problems and domiciled them into five thematic areas: which is social discrimination and stigmatization, healthcare—skin cancer in particular—learning and education, policy and legislation, and economic empowerment.
 Albinos in recent times have been targeted for rituals. Is this still a big concern especially in Nigeria?
It is not as rampant as it is in East Africa, Tanzania in particular, but we can’t dismiss the fact that it is available in the country, because on 19th of April 2014, we had a taste of it in Delta. Two years before that, we had a stint of it in Makurdi, where a woman gave birth to an albino and few months after chopped off the baby girl’s head. There are also unreported cases of such acts, especially now with elections, there is still apprehension that a lot of politicians might want to do rituals with any person vulnerable, since that’s what their native doctors ask for.
As a foundation, is there any step you have taken to make sure such things don’t come to play?
Basic awareness, getting them aware that, ‘hey, you are an endangered species, so protect yourself, and ask for protection if you find yourself in a vulnerable position. Don’t expose yourself unduly. Ensure your family is aware where you are going to. And where you need help, call for help. Our lines are open for calls when our assistance is needed.
Has discrimination and stigma against albinos reduced?
If you ask me to blow my trumpet, I would say it has reduced 75%. People are becoming aware that we are not subjects of derision or laughter. They are becoming aware that there are certain things you can say to us as human beings and we go back and cry privately. A lot more is still to be done, especially in rural areas. In urban areas, stigma has drastically reduced. While growing up, I remember times walking in the street and children running after me, chanting, ‘oyibo pepper, oyibo pepper’—including adults. They ask, ‘do you see?’ In Igbo, they say, ‘onye ocha furu uzo’—a white man that lost his way—right in your face. These days you hear that and someone else says, ‘why did you say that?’ A lot is changing.
What major health challenges do you face as an albino?
Skin cancer is a major factor, and we are afraid of it. I have started developing some features, and once in a while I ask for medical assistance, but that’s me. How many of us will even have that opportunity to even know what they have is skin cancer? A young man with sporocel carcinoma on his face and he went to an ignorant medical personnel who thought it was a boil and treated him for boil. The thing about it is the more you leave it, the faster it expands. By the time he came back, it had become malignant, and he died. At least one or two albinos die every month from skin cancer.
Have you gone into partnership with any health organization to help?
The federal government is our greatest partner in that regard. That’s why we remain grateful to Goodluck Jonathan administration, which has helpfully paid our treatment bills. It is the only government in the world doing that.
We have been able to get INEC to make a categorical statement that albinos are included in preference voting condition. What that means is groups of people who are physically challenged will be exempted from certain routine during electoral process—like standing in line under the sun, as long as you are in open environment, you still get burnt.
I have been pushed to think through what can help us, and I’ ve discovered three apps that can help magnify ballot papers to see where you vote. We are willing to give that information to our members and other physically visually challenged individuals. We shall demonstrate that in public appearances.
They can invest in an app. Once you pay for the developer, all you do is update it. It is actually cheaper than buying a magnifier. It goes for $50 from the manufacturer. We engaged them and they brought it down to $20. We told them we are not interested in any commission, they should sell directly to INEC.