THE INDEPENDENT EXPERT

Ikponwosa Ero

By Standing Voice

June 11^th, 2020

I was born in the city of Ibadan, Nigeria. I am one of six siblings.

When I was first born, my parents had difficulty understanding why my mother had given birth to a child who was white. How did this happen? Rather than rejection, it was more a sense of confusion. My parents did their research and, knowing that my father’s uncle had had albinism, found peace with my condition. The real problem came from others in their community.

Living in a country as densely populated as Nigeria, we would experience a lot of name calling and verbal abuse when we left the house. The psychosocial suffering we experienced on a daily basis still brings my mother to tears at the very thought. Mothers of children with albinism experience a particular kind of suffering. People in the community would come by and say painful things. Relatives would say painful things. I felt my only option was to stay inside and only went out for essential things like school and church. Leaving the house was an ordeal for my family, with bystanders taunting us with songs about people with albinism. I chose not to go out in order to spare my family.

“I soon realised my life was going to be hard. I had an awareness that albinism was going to have a large impact on my life by the age of five. My vision for my future narrowed because of it. If I couldn’t even ride public transportation without experiencing discrimination, I knew I was in trouble.”

School was difficult. One of my worst experiences was in preschool. A child used to beat me up every single day. I don’t remember many things from that age but I remember this. I would run from him and attempt to hide but because my eyesight wasn’t strong, he found me straight away. Suddenly, I would feel a huge strike to my head. I went to my mother and told her I didn’t want to go to school anymore. At the same time, my nursery teacher was proposing I be held back a year. Because of my vision, I couldn’t see what was being written on the board so I drew lines and shapes instead. My teacher contacted my mother and told her I couldn’t learn. Instead, my mother proposed to teach me over the summer to catch me up and soon discovered it was due to my eyesight that I was struggling. She took me across town to visit every ophthalmologist and eye specialist she could find. The role my mother took for me at this age can’t be underestimated. She advocated for me throughout primary school and made sure I got my education.

Socioeconomic differences in Nigeria are stark. Depending on the bracket you came from, the myths about albinism would change. If you were in a lower class, you might have been told albinism was contagious. Higher up the spectrum of economic development, myths would shift. Some said a person with albinism couldn’t see in the afternoon; people would use names like ‘unfortunate European’. Myths existed about skin cancer, about ritual attacks, about the way people with albinism did or didn’t die.

“People would hardly ever use my actual name. Not using a person’s name says a lot in African societies because our names mean so much. Your name is your identity, especially in our culture. But I would just be referred to by my condition. Today, I confront people head-on when I get called a cruel name. I ask them why they use that language. What was the point? I have a conversation with them until I’m sure they’ll never use that taunt again."

My siblings and I moved to Canada with my mother when I was 15. One of her main reasons for moving us was because of me. She wanted a better life for me. In Nigeria she could see the same narrow vision of my future that I could, so she decided to do something about it.

Arriving in a predominantly white country, I was suddenly no longer the odd one out. Children at school didn’t know who or what I was. Eventually the word went round and I could hear people whispering ‘albino’ or worse as I walked past. One time, my dark-skinned sister and I were once on the bus, sitting separately. An old lady moved away from my sister and sat next to me. She began complaining to me about black people! It’s a very interesting experience having people not view you as black. All they see is white. Sometimes I could tap into white privilege in the strangest places.

Living in Canada, I gained three degrees, studying for 13 years to become a qualified lawyer in 2013. I loved the versatility that law offered, and I had a sense that I would end up using law in an unusual way. I started my career in the Government of Canada’s Department of Justice, but my family were continually encouraging me to pursue a career that would help other people with albinism. I couldn’t just be comfortable in Canada; I needed to help people everywhere. In 2006, I registered my own NGO in Nigeria but soon realised it would be impossible to keep it running while I was still studying. I went to church to pray for help: I asked for people to be sent to help me help people with albinism.

Photo by Don Sawatsky (Under the Same Sun)

Two years later, the attacks started happening across Africa. I was distraught. I went online to find out what was happening and how I could help. I found a petition set up by the NGO Under The Same Sun, who were promoting the wellbeing of persons with albinism through education and advocacy in Tanzania. Before I knew it, I was meeting with the NGO’s founder Peter Ash, a fellow person with albinism who happened to be living round the corner from my family in Vancouver! He soon offered me a job as a consultant for the charity while I was still completing my studies. It was this that led me on the path to greater advocacy and research around albinism in Africa, before eventually taking up my current mandate as the United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism. For me, the mandate was an opportunity to convert the dismay and depression I felt as a result of the attacks into tangible action. I could either become a lawyer, or I could venture into this unknown territory for the sake of people with albinism.

"This mandate has been the most exhilarating and the most challenging experience of my life. I feel privileged. In the end - looking back over the entirety of my term - it has been an honour. It is me who should be grateful, not anyone who benefitted from my work. I should feel grateful I was called upon to do this and entrusted with such a beautiful mission. It has been an opportunity to change hearts and minds. "

There are so many moments throughout the mandate I will never forget. The kind of awareness we have been able to generate around the world is huge. Forming a Global Albinism Alliance; creating the Regional Action Plan on Albinism in Africa; getting the African Union to address the issue of witchcraft. These are all monumental steps in our journey toward a better future. In 1999, there were around 20 albinism groups across the globe; now there are over 200. The mandate hasn’t come without its challenges but it is these achievements that make me realise how far we have come.

“My hope for the future is that in the end, people with albinism will become part of human diversity. They will be known by their names, and not by their condition.”