ELVIS IMAFIDON

An Interview with Standing Voice

By Standing Voice

July 31^st, 2019

Elvis Imafidon is a Nigerian lecturer with albinism, working in the Department of Philosophy at Ambrose Alli University. Born into a community (and country) that failed to understand his difference, Elvis has risen above discrimination to become a powerful advocate for the rights of people with albinism everywhere. His most recent book, African Philosophy and the Otherness of Albinism, is a powerful exploration of the existential challenges facing people with albinism in Africa today.

Discover Elvis' inspiring story below.

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My first day of school was the day I realised I was different.

As I entered the classroom for the first time I could feel the eyes of my peers resting on me, watching me with palpable suspicion. One snide comment from the teacher was all it took to send them reeling with laughter. Not the light-hearted chuckles I had become accustomed to when playing with my siblings but cruel, sharp sniggers; laughter designed to make me feel unwelcome.

As I continued my school journey, things only got worse. I was ridiculed for having to get up during class to look at the board and some teachers even forbade it. Punctuated with poor understanding and callousness, primary school and the first few years of secondary school were a real struggle and my grades began to suffer.

Despite this, I clung tenaciously to the belief that education was crucial if I wanted to improve the lives of other people like me. With this as my inspiration, I managed to find ways of coping in school and thankfully my grades began to improve. This would not have been possible without some sort of refuge from the name calling, bullying and lack of understanding I was subjected to in the school yard. Thankfully this refuge came in the form of a supportive and nurturing family environment.

“I realise now that my parents didn’t hold the beliefs that most people had about albinism. They showed me care and love and wanted to do their very best for me, the same with my brothers and sisters. Home was always a place where I felt loved; that mattered a lot growing up.”

Although this is not always the case for children with albinism, my family were always there for me. Even when I suspected they were suffering due to my albinism they were unwavering in their encouragement and never made me feel like a burden. But caring is one thing and knowledge is another; although they always had an abundance of the former, they still lacked the latter. For instance, due to a widely held but mistaken belief, for the first 13 years of my life my mum made sure I didn’t eat salt as she thought that it would cause damage to my skin. At aged 14 I finally took a stand, going on hunger strike for days because I couldn’t stand the bland food I was forced to eat at home. Eventually my mum relented but she was very bitter about it; she thought that denying me salt was helping me and she resented the idea that my skin conditions might get worse for the sake of slightly better tasting food. But I knew myself and my body and I knew that salt was not the problem; although at that time I was not sure exactly what the problem was. A few years later I learnt the hard way that the sun was the real enemy of my sensitive skin.

“The idea that people with albinism should not eat salt was common knowledge. Knowledge like this would just spread around; it’s not factual but people live by it, it is socially entrenched”

As a child I would rarely spend long periods of time in the sun. I would leave home and be at school within 10 minutes. I would then spend my days shaded from the sun in a classroom before making the short walk home again. As my parents were relatively well off -- my father was a school principal and my mother was a university clerk -- they were able to handle all the household bills, meaning that, unlike many of my peers, I was never required to spend long hours in the sun doing menial jobs. As a result my skin never suffered too badly, and although over the years it deteriorated slightly, I was never able to figure out the cause.

This all changed when a classmate’s bad behaviour saw my whole class kept behind to complete some gardening work. Unfortunately, this proved more punishing for me than it did for the others. After 5 hours in the sun pulling weeds and tending to plants my skin was red raw. This was the first time I had got sunburn and it was agony. My whole body was on fire and due to a lack of information about albinism no one knew what to do. When I got home my mother was distraught; she contacted a nurse, but the nurse had never come into contact with someone with albinism before and could not give my distressed mother any advice. Eventually one of our neighbours, who was a professor in the sciences, recommended that I apply honey to my skin. This soothed the burns to an extent, although in a few days my skin began to peel and it was over a week before I was able to go back to school.

Following this there was no doubt that sun exposure was the problem and I was able to get a better grasp on how to care for my skin by covering up and ensuring that I didn’t stay in the sun for too long. However, I was still suffering from the damage inflicted on my skin, so at the age of 18, whilst visiting my uncle in Benin City, I booked an appointment with a dermatologist. Although I had never been to a doctor because of my albinism before, I was very cautious. All my experiences with doctors until this point had been resoundingly negative. I could feel that they were not comfortable with me being around and would treat me as quickly as possible, often not giving me proper care, just to make sure I got out of their clinic. Luckily this time was different: for the first time I felt like the doctor treating me was relaxed, taking his time rather than rushing to get rid of me. He managed to find some growths on my stomach, which thankfully were benign, and prescribed me with some medicated cream to help protect, heal and regenerate my ailing skin. Although this cream proved almost impossible to find, the experience allowed me to regain some of the trust in medical professionals that had been completely shattered over the years.

“I could tell doctors were irritated by my presence; you know when someone has that attitude towards you, you can feel it and it stops you from expressing yourself. You can’t really have a good discussion in the first place when a person is like this.”

A theme running through all my negative encounters seems to be a lack of care coupled with a lack of knowledge. I have learnt that both are equally important, and that it is vital to have both. The lack of care I experienced at the hand of doctors and teachers stifled the possibility of any kind of meaningful discussion about my needs and the needs of people with albinism more generally. Similarly, although my family always showered me with love and affection, they were unable to protect my skin from sun damage as they lacked crucial information.

“I draw a distinction between being educated and being enlightened. A person might be educated but still view things in a way that has been entrenched by his or her culture.”

It was a desire for this synthesis of knowledge and understanding and a determination to expand my perspective beyond what is culturally entrenched that led me to complete my PhD in philosophy and become a university lecturer. Through philosophy I was exposed to theories and methods of critical analysis that I was then able to apply to my own experience of albinism. This experience, and the desire to provide more answers for people with albinism, caused me to shift the focus of my research and for the last four years my focus has been on the philosophy of albinism.

Although I find this research fulfilling, I came to realise that my work was not really reaching my target audience. I didn’t want my writing to only be accessible to scholars; I wanted it to reach school children and teachers, doctors and nurses: those who encounter people with albinism on a day-to-day basis and those whose interactions with them are likely to have a tangible impact on their daily lives. In order to rectify this, I have begun developing pamphlets which offer practical information on albinism while also encouraging the reader to take a more empathetic stance toward those with the condition. If we are to change the way people think about albinism then we need to encourage change within the institutions that have the most contact with people with albinism; that is why I hope to disperse my pamphlets as widely as possible within healthcare institutions and schools.

It is only through familiarisation that people start seeing difference as something to been embraced rather than feared. The pamphlets are a start but there is still a long, long way to go.