Interview with Nonye Ogbuagu of the Albino Foundation about challenges for persons with Albinism and the fight against stigmatisation and discrimination.
Persons with Albinism are most often forgotten within the community of persons with disability. Yet, they too have numerous challenges. During our palliative outreach, several persons with Albinism visited our office and one of them shared her mind with us.
Thank you for talking to us. Please tell us about yourself.
My name is Nonye Ogbuagu, the assistant coordinator of the Albino Foundation Enugu Chapter and the National Welfare Executive of the Albino Foundation. I am from Amokwe in Udi LGA, Enugu State. I am a French teacher by profession.
"There are lots of myths regarding Albinism"
What is the Albino Foundation about?
The Albino Foundation was founded in 2006 by Pastor Jake Epelle. We have grown, we are now an adult. It is a foundation founded to help, create awareness about Albinism, help build the confidence of persons with Albinism, and to educate people about the myth of Albinism because there are lots of myths regarding Albinism. We want to tell people that Albinism is an inherited condition caused by the lack of melanin. A child inherits Albinism from both parents, not from one. Both parents have the gene, so when the receptive genes come together, they will have a child with Albinism. Albinism can come in any race, status, and gender. Even in animals and plants, we have Albinism. We have two types of Albinism: Oculocutaneous and Ocular Albinism. Ocular Albinism affects only the eyes, so the person can have a dark color, but in the eyes, the person has Albinism. Then the Oculocutaneous affects the eyes, hairs, and skin like me – basically, the skin is white.
"Many Times Persons with Albinism Are Discriminated Against"
What are the challenges that persons with albinism face?
We have a lot of challenges. We have a health challenge that means we have poor vision, we don’t see well. We are visually impaired because of the lack of melanin which affects the retina. So the sun goes directly to the retina and makes us not to see well. If a person with Albinism is exposed to the sun, the person may develop skin cancer. So the sun is our greatest enemy, that’s why we preach to our members, parents, and society to avoid the sun and help us avoid the sun. If you must go out, then you dress properly. Wear your protective dresses like long sleeves, use your sunscreen, and a parasol umbrella. Another challenge is stigmatization and discrimination of persons with Albinism. Most times they are discriminated against. When you go to look for a job or go to school, they will ask what can this one offer? They may deny you your rights.
Help Persons with Albinism
"Is it not God who created these persons just as he created me?"
There are women that when they give birth to a child with Albinism, the family members will chase the woman away with accusations of infidelity. Everyone in our family is dark, where did she get a white child that she must have slept with a white man. Sometimes they say it is a curse from the gods or the ancestor. Sometimes they say if when a couple is consummating for a child and it happens in the afternoon or the woman is menstruating, a child with Albinism will occur. Sometimes they will tell you that the blood of persons with Albinism is used to generate money that is why they kill us in Tanzania. All these are myths and they are wrong. A person with Albinism is normal, we just have the challenges of the sight and skin. It is not easy for us, you will be walking on your own and people will be calling you names, using derogatory names and it makes people go back to their shells. If you don’t have that confidence and boldness when you are walking on the road, people will be calling you names like crayfish, overripe mango, pawpaw, and all these nonsense names. You will be asking yourself what is all this? Is it not God who created these persons just as he created me? So this is basically the things we experience as persons with Albinism.
"If he can do this to me as an adult, I wonder what he will do to a little girl"
Have you had any personal experience with stigmatization and discrimination?
There was a day I was passing along Polo-Park-Mall road around 5 pm. A Policeman was passing by me and this policeman hit me in the stomach and said “Albino”. Oh my God, it is in broad daylight and a policeman in uniform is hitting me. If he can do this to me as an adult, I wonder what he will do to a little girl. I didn’t allow him to go, I had to hold him and claim assault. Some good people passing by had to step in and settle the matter. These are just one out of hundreds of what we see as persons with Albinism. Some men go and rape women with Albinism saying “let me see how this one will be”. It’s terrible!
This period of COVID-19, how is the community faring, has there been any targeted palliative care?
No!!! None aside what your organisation is doing. We have been applying and writing, I am supposed to even write this morning to the Deputy Governor and see if there is something they can do for us even for our International Albinism Day. You know someone who cannot go out into the sun and now you are on lockdown, so nothing is happening. Nobody, no other person has actually come to our aid.
"There are people dropping out of school because they cannot cope"
How do you want society to help your community?
Everywhere I go to talk and seek support, the first thing I ask for is advocacy. It is to help us create awareness because all these things I am saying happen here in the township. We have people in the villages, in the hinterland, who don’t even know their problem. We have farmers who need to be educated on how to go to the farms. We don’t say you don’t go to look for your daily bread. But if you are going, you have to protect yourself. I went to Mgbowo, basically, everyone with Albinism I saw in Mgbowo already is sick with cancer and yet they don’t know the cause. They don’t even know what their problem is. So if there is an organisation that will help us to go create awareness in the villages and all these local government areas, teach them about the parasol and how to dress well. It doesn’t mean you should buy clothes that are sold for millions, just dress properly and buy the ones that suit the environment where you are. Then we have people who are dropping out of school because they cannot cope [due to their visual impairment]. So we are looking for people who can help us get visual aids. We need visual aids – the sun protective ones, and the ones for reading. The sunscreen is expensive, not everyone of us can afford it. It is about four thousand and five hundred Naira for one. You see with the position of the country now, how many people can afford this?
"We really need people to come to our aid"
Those of us who are qualified to get jobs, we are also discriminated against. The Police discriminated against one of us: The person attended their training and did very well. When everyone was given their appointment letter he was not given one. Their reason was that he can’t do police work because he is a person with Albinism. But thank God for the Foundation! We fought for him and he is now a Superintendent in the Nigerian Police. We really need people to come to our aid, especially our children.
Any special celebration to mark this year’s Albinism Day?
We do have, but because of the COVID-19, we are not going to have our physical coming together on the 13th of June. But our activities start on Thursday with a media tour in every state in the country. On Saturday we are going to have a virtual conference and workshop via Zoom. Anyone who can afford will join so we can do our conference as usual.
Thank you for your time!