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It’s an problem; some people think sleeping with albinos cures HIV/AIDS – Disability advocate

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There are a lot of myths surrounding the private parts of persons with albinism. Some people just want to have intercourse just so they will feel what it is like and see it. They want to even brag among their friends that they have ‘tasted’ a woman with albinism. In some places, people say we should be worshipped. That is a lie. We are just like every other human being; we don’t need worship.

Abuja-based disability rights advocate, Chizaram Onyemaechi, takes GODFREY GEORGE into her world as a person living with albinism and how she is surmounting the challenges that come with it

Tell us about your background.

My name is Chizara Onyemaechi. I am from Umuahia in Abia State although I was born in Lagos State. I had my primary and secondary education in Lagos and tertiary education in Imo State, where I studied English Education. I currently work as an advocate for persons living with albinism in Abuja.

What was it like growing up as a child with albinism?

As a child, I didn’t know about the disability but I knew I was different. People always tried to make sure they remind me, at one point or the other, during discussions or disputes that I am different. That is why I am not surprised that I am working in this space with persons living with disability as a volunteer. I started volunteering with the Network of Women with Disability in Abuja in 2020. So, as a child then, I had difficulty with my sight. I couldn’t see at all. It looked like someone turned on the light and pointed it directly into my eyes. I didn’t know what it was. When I looked at my brothers, who are dark-skinned, it made me question myself. Because I couldn’t see, I had poor performance at school. The headmaster of the school then didn’t quite understand what albinism was all about. In fact, he didn’t even see it as an issue. It was in the early 90s, so, whenever I went home and told my dad I couldn’t see, he was amazed. I had to sit directly in front of the TV before I could see anything. It infuriated him so much. It made me cry so much.

As a child, I couldn’t go out to play like other kids. They would tell me that if I went out, I would turn red, and if I continued like that, I might develop skin cancer. That scared me, but I still disobeyed them when I could anyway. I had to wait for the sun to go down before I could join the kids to play. I couldn’t participate fully in games because my mates did not think I was qualified to play with them. If they picked me to join the games, they did it out of pity. The girls were not really welcoming, so I played with the boys, though my brothers were not happy with that decision.

Since you didn’t do well in school at the time, how did you manage to graduate?

I feared going to school so much then because nobody understood what I was going through. They just felt I didn’t like school. Nobody bothered to ask why my performance was bad and it was so frustrating. The worst part was that with every poor performance, the headmaster flogged me. It made the fear of school increase in me. I told my parents I didn’t want to go to school again. I had to manage with the terror although I struggled through school.

Were there some discriminatory tides you experienced as a child because of your disability?

As a child then, I couldn’t really say this or that was discriminatory. I only remember that, at a point, my dad changed my school. I got into another school, repeated Primary Three and he told the authorities that I told them I could not see. They asked me to pick a point where I could see the board clearly and I did. It was very close to the board. At that time, no one wanted to be friends with me. My classmates avoided me so I had a lot of time alone. I had many imaginary friends with whom I spoke and shared my fears and held conversations about my life. I was more of an introvert because I was just in a world of my own. Because my dad was someone who loved education, he didn’t want to give up because I was having a hard time at school. I couldn’t read anything, but my dad took it upon himself to wake me up early in the morning, when the sun was down, to teach me how to read.

It was in secondary school that I witnessed intense discrimination. I got admission into a public school and got to see people far older than me who were my classmates. Sometimes, when I was on my own reading, they walked up to me and placed their fingers before me and commanded me to tell them how many fingers they held up. It was frustrating. I cried. They mocked me. They used to say to me, “Oyibo pepper! Albino that cannot see in the afternoon!” Even if I didn’t do anything wrong to them, they just wanted to make me cry. I had no protection, so you can imagine all I had to go through. I had to learn how to survive in the environment. I made the teachers my friends and during a break, I went to the staff room and listened to them talk.

Apart from the teachers’ offices, what were some of the other safe spaces you went to for solace when you were overwhelmed with the discrimination?

I doused myself in books. My dad had a lot of books. Even though I was too young to understand everything in the novels I read, I still enjoyed opening them and reading them for reading’s sake. It helped me create a world of my own in my imagination. It was a really safe space. Reading books made me not face reality so much. I began to converse with the characters in the book and I even made friends with them. I also thank nature for the love of a mother. My mother never saw me differently. Whenever people mocked me and said I was blind, she would tell me that it was untrue. She’d reassure me. My home was a perfect place to make me feel good, but they couldn’t really protect me for so long because I had to go to school, and there I met people who brought me back to the harsh reality that I was different.

Did this discrimination continue in university?

Of course, yes. I had my coursemates discriminate against me. One time, I attended the wedding of a coursemate and one of my colleagues who were there went to the WhatsApp group to make some discriminatory remarks about how I looked odd and all that. That statement got to me, I won’t lie.

There is a general argument regarding albinism as a disability. What are your thoughts about that?

It took time for me to actually accept that albinism is a disability, but I had to put my emotions aside and find out the true meaning of the word ‘disability’. I came to the realisation that, even as a person living with albinism, we have limitations. The simple definition of disability is not that you just have an impairment. It means that when your impairment comes in contact with other social constructs, it becomes a disability. We still have barriers in society. If they are taken out, you will no longer hear of persons living with disabilities.

What exactly is it like living with a disability and how have you been able to navigate your world so far?

As a person living with albinism, I cannot go out at 10am for any reason if I don’t have sunscreen or UV protection, but others can. If I dare go out at that time when the sun is hot and stay in the sun for a while, it may lead to skin cancer. That is not the same as others. Albinism has different types. There are the ocular and oculocutaneous albinism types, and they present themselves differently in different people. There are some persons living with albinism whose eyes are a different colour and may not be able to see once the sun is out. The second type affects the eyes, skin and hair. This is where you see discolouration of the skin and other issues that are attached to it. So, even as a person with albinism, I may not have the same type of albinism as other persons with albinism. The degree of vision may be different, and putting us into one box may not cater for our needs. Imagine not being able to go out in the sun like everyone else.

It is a step-by-step thing. How I felt about this condition then is not how I feel about it now. I see albinism as a strength and not as a weakness. I have been able to channel my strength by working hard. I had to change the narrative that persons with albinism can do more and be more despite the fact that there are limitations. We go through a lot when it comes to basic education which is what every citizen should have. Most persons with albinism don’t get proper education because of the various limitations.

Have there been times when you were denied jobs even though you were qualified?

I hear a lot of people with disabilities go through this. It happens, but no company will come and say they didn’t give you the job because you are a person living with albinism. Sometimes, it could also be what is in our heads. Personally, I haven’t been denied jobs because of my look but that does not mean it doesn’t happen. I applied for Future Leaders Connect, a programme with the British Council. I didn’t know I could do it till I saw the mail from the council, telling me that I had been chosen as part of the top ten.

Have you had failed relationships because of this disability?

My relationships with people have been fine but I am a very sensitive person. I am sensitive to words and actions. This is what you get when you grow up in the midst of discrimination and negative vibes. I used to have a boyfriend who left because his friends were mocking him because his girlfriend is an ‘albino’. I am just very careful these days. Some of the boys who approach me, do so just to have a ‘taste’ of me because of the myth that persons with albinism are ‘juicy’ and strong in bed. Some even said if a person living with HIV/AIDS sleeps with us, they would be cured.

There are a lot of myths surrounding persons with albinism. What is your reaction to some of them?

There are a lot of myths surrounding the private parts of persons with albinism. Some people just want to have intercourse just so they will feel what it is like and see it. They want to even brag among their friends that they have ‘tasted’ a woman with albinism. In some places, people say we should be worshipped. That is a lie. We are just like every other human being; we don’t need worship. Some want to use our body parts for ritual purposes because one witch doctor told them so. I have visited some orphanages that help rescue children living with albinism. In some communities in this country, it is still taboo to have a child with albinism. When a child with albinism is born, that child is quietly taken away to an orphanage home if the mother does not want harm to befall the child. These things are still going on here in Nigeria, but they are silent. No one wants to come out to talk because of how our society has been programmed.

Has Nigeria done enough as regards safeguarding the lives of persons with albinism?

For me, I will say Nigeria hasn’t done anything to safeguard the lives of persons living with albinism. How many hospitals can come out and say they cater for the skin and eye needs of persons living with albinism? We have had cases of persons with albinism dying of skin cancer. Skin cancers are very expensive to treat. How many people can afford it? Persons with albinism should be able to have safe, quality and affordable health care, but because the healthcare system does not factor in the needs of persons living with albinism, it has failed us. How many hospitals in Nigeria have a dermatologist who one can access at a subsidised rate? The skin protection creams are expensive. How many people can even afford them? I don’t think the Nigerian government has seen the need to put all of these in place because they don’t understand. The Nigerian government should do more.

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