IKPONWOSA ERO: HOLDING THE TORCH FOR PEOPLE WITH ALBINISM
16 Nov 2020
By Machaba Matsapola
People with albinism have been persecuted for way too long in the African continent because of the deeply rooted myths and superstitions. Some of the myths said about people with albinism include them not dying but disappearing, their body parts bringing riches and that sexual intercourse with a person with albinism can cure HIV/AIDS.
Even in the year 2020, there are still reports of killings of people with albinism in countries like South Africa, Malawi, Mozambique, Tanzania and Kenya. With mainstream media only reporting on the atrocities suffered by people with albinism, there are a few media outlets that shine the light on the lives of people with albinism and try to tell the enlightened narrative.
Ikponwosa Ero is at the forefront of the movement of advocating for the rights of people with albinism, teaching the world about albinism and working with the judicial powers and head of states to put laws in place that will protect people with albinism and if possible eradicate the attacks that have been making people with albinism to feel unsafe.
The 38-year-old activist and lawyer is a United Nations Independent expert on the enjoyment of PWA and has been working tirelessly over the years to try and bring change. As a woman with albinism herself, the remarkable work that she does is very close to her heart and she can relate to most of the stories that she comes across. Through her work she gets to promote social cohesion and make a contribution towards encouraging communities to learn and spread factual information about people with albinism, encourage people with albinism to realise their full potential and learn about their human rights. She takes her time to talk about her background, work, aspirations and life in general.
1. Tell me about your childhood in Nigeria.
My childhood in Nigeria was tough. It was generally tough for most in the country but having albinism made things extra challenging in peculiar ways. It was an ordeal to go out because doing so meant certain mockery in Nigeria’s densely populated streets. By age 6, I would ruminate and struggle with anxiety while preparing to go into the city with relatives. I remember the chants of songs about albinism that other children (and adults in some cases) would sing to me when I walked on the streets. These songs – often filled with myths about albinism – would begin by one or two children. These lead singers would be followed by a loud chorus of song supporters. For some reason I would feel shame like I had chosen to wear the wrong cloak. I would also feel shame also for the adult who had taken me out. By the age of 7, unlike most children my age, I was glad when I was not chosen to go to the city with an adult. I worried about what my future would be and how I might survive or thrive later in life. I started asking some profound questions: why was I born this way? What is the purpose of life? I found many of these answers slowly through my Christian faith.
Thankfully, my family also tried to live out that faith. This meant that I was accepted by them, and treated like any other child at home. I was encouraged to dream and was supported. I had chores and was scolded when I did wrong. In the face of daily taunts, they spoke resilience into my heart – “Don’t listen to them; you are God’s creation. They have no right to mock God’s creation” and so on. I believed my family. They were small in number versus those that mocked me on a daily basis but they succeeded in planting seeds of resilience in me.
2. How was your school life?
School was good overall. I loved learning. I liked literature and history. I also liked mathematics and biology. I particularly liked the logic in these latter courses; how everything in them appeared internally coherent. The problem was mathematics and biology were often taught on the board and I could not see the board. Albinism often comes with a vision impairment and it is often an unexpected discovery among family members. It was also unknown by my teachers.
After finishing preschool, my mother was called in and advised that I was unteachable and should repeat the class. My mother, a teacher herself, refused to accept this report. “My daughter is intelligent,” she said. I will teach her over the holidays, give me the curriculum. While teaching me, my mother saw how quickly I learned but also saw how close I moved to the blackboard she had set up at home.
After going to various optometrists and painfully accepting that there was no cure, only assistive glasses and devices, she dedicated a lot of her time showing up at my primary school to verbally twist the arms of some of my teachers to move me closer to the board so I could see. In secondary school, I struck a deal with a friend who wrote notes for me while I completed some of her homework. She was highly intelligent in mathematics but hated English and history so I did her work in those areas.
In secondary school I also learned how to thwart bullying. My mother had intervened in several instances of bullying in primary school including one notorious case when I was 4 years old, whereby the little boy beat me mercilessly on a daily basis, so much that I refused to go to school. By secondary school, I had developed a certain level of confidence and could ward off bullying as much as possible, or at least pretend to ignore it.
3. What studies did you do and what was your first job?
In the 1990s, my family moved to Canada before I finished secondary school in Nigeria. In Canada, I finished secondary school, attained bachelors’ and Masters’ degrees in Political Science and International Relations. I subsequently went to law school after which I practiced briefly at the Federal Department of Justice of Canada and was subsequently called to the Bar in the provinces of Alberta and British Columbia.
4. When did you start to be an advocate for people with albinism and what inspired you to take on this role?
The short answer is that it began in small ways in 2002. The long answer is that it began in earnest in 2008. Here is how and why it happened. In 2001, I returned to Nigeria to visit my father. While there, I saw people with albinism in the streets. Some selling as street vendors, others hawking and still others peddling. One of them, a hawker with a tray of unidentified goods on her head was selling at a bus stop when suddenly, a fellow hawker without albinism saw me and called out to her in Yoruba: “hey, come and see your sister! Go ahead, both of you, speak your hidden language. Speak French!” He chuckled. I will never forget that moment, I was in an unmoving bus looking through the half-open window at her. She stared right back at me and smiled, “heel,” she said. “You look nice.” I looked back at her, at a loss for words. Her smile revealed she was young, likely younger than me. But her skin was wrinkled badly from unprotected sun exposure, her face extremely burnt with a dark pink hue, her eyes badly squinted, trying to look at me, no glasses, no sun shades to protect her eyes from the bright sunlight. I sat there in a public bus not sure whether to cry or give a quick lesson in sun protection knowing fully well she was also poor and had to do this work outdoors. She probably couldn’t go to school too. I smiled as best as I could and was glad when my bus suddenly jolted forward. My sister who saw everything, and who doesn’t have albinism said to me, “You have to do something. You have received far more than she has. Do something for them in Nigeria.” I knew she was right so I said nothing.
By 2002, I had registered an organization in Nigeria to respond to the situation. This marked the beginning of my work on this issue. However, never did I imagine that things would escalate to frequent ritual attacks against people with albinism in several African countries. In 2008, my work in advocacy for people with albinism intensified to respond to these extreme human rights violations.
5. How did you get involved with the United nations human rights?
Between 2008 and 2012, I worked as a part time consultant to a non-governmental organization responding to the crisis of attacks against persons with albinism in Tanzania called Under the Same Sun. In 2013, I started working with the same organization but in capacity of international advocacy and legal officer. In that role, I researched and produced high-quality reports for Ambassadors and Delegates to the UN Human Rights Council as well as position papers used by policy-makers. While doing these tasks, the UN established the position of independent expert to respond to the extreme attacks faced by persons with albinism. I was appointed to that role in 2015 based on my experience in the field.
6. What does being an independent expert on albinism entail?
The position of independent expert could be understood as a type of consultancy. There are scores of independent experts at the UN of which I am one. The UN human rights council and the UN in general rely on such experts in the ability to objectively pay attention to certain thematic and country situations. Independent experts conduct in-depth studies and monitor human rights through country visits and the issue of thematic reports relevant to their mandates.
For instance, I have written a report on the right to health in context of persons with albinism which includes the issues concerning skin cancer faced by persons with albinism and low vision and the disability supports they need in this regard. I have done several country missions including to Tanzania, Malawi, Kenya, Mozambique, Fiji, Brazil and South Africa. Advocacy is another area that the independent expert can act. Accordingly, I have done scores of activities across six continents to raise awareness about albinism and to demystify the condition. To help everyone see people with albinism as ordinary people.
7. What are some of the most shocking and hurtful stories you’ve come across?
Recently a young girl with albinism in Zambia, age 7, was attacked and one of her arms hacked off and taken away. Prior to that, I saw photos of a woman with albinism in South Africa who had been hacked into pieces.
These are part of hundreds of such horrific crimes that people with albinism face in several African countries. The attacks are often based on belief that the body parts of people with albinism can be used in so called “witchcraft” rituals for wealth and goodluck. This is completely false and a lie from the pits of hell perpetrated by hellish people to take advantage of a group, that has for so long been discriminated against, mocked and persecuted with no one to speak for them. These cases make me very angry and I often weep while working. When I have the privilege to meet the family members of victims, I weep with them. It is because of these cases that all shyness disappeared from me when I began working in advocacy in this field. I call for a change of heart and total repentance to any one who engages in these practices, including all forms of ritual attacks. I call on those who discriminate – even basic mockery against persons with albinism, which contributes to their dehumanization – to have a permanent change of heart. Change and join the movement to make the world a better place. We all deserve to be here.
8. Who are some of the most prominent people you have met?
The Pope. While I have met Ambassadors and heads of government, my meeting with Pope Francis was the most striking. In the meeting, I gave him a photo of people with albinism from around the world for his blessing. The photo was a symbol of all the work being done for person with albinism around the world. He blessed it. Months later, I was appointed as independent expert. I do not think the chance meeting we had with Pope Francis was a coincidence. Whenever I encounter difficulty in carrying out my mandate, I remember that time and that blessing. I know that this work is super-naturally ordained. The lives of many people with albinism over the decades and centuries has been heeded.
9. What are other skills and talents do you possess?
(laughing) I am not sure anymore. I have been so immersed in albinism advocacy in well over a decade (Not complaining, it has been a privilege). But if I am pushed, I would say, language skills, singing skills (not dancing skills unfortunately), organizational skills (I considered becoming an event planner many years ago), communication skills (which has been put to very good use on this mandate).
10. In your opinion, where do you think all the myths about albinism comes from and why is it so hard get rid of them?
Myths come from a place of pride. When we do not understand something, the humble and right thing to do or say, is I do not understand or I do not know. Therefore, myths are the answers prideful people give in the face of something s/he does not understand and is not humble enough to admit their lack of knowledge in this regard. Pride is also the culprit when one knows the truth but still chooses to believe the myth. In other words, the refusal to learn or willful blindness for whatever reason.
Therefore, it is hard to get rid of new and old myths because it is hard to get rid of pride. This is why I have learned that in advocacy, using honey is better than vinegar. It is important to help ignorant people save face. To help the ignorant transition from pride to humility requires constructive dialogues and not necessarily shaming them.
11. What do you think African governments should do more on this issue?
There is a Regional Action Plan that the African Union put in place recently which I helped to develop in context of my mandate at the UN. More importantly, the content of the Plan was determined by leaders of organizations representing people with albinism in over 20 countries in Africa. The Plan contains concrete measures to implement in advancement of the well-being of people with albinism.
African government should implement the measures of the Plan and support organizations representing persons with albinism so that they too can implement those parts of the Plan within their ambit. The Plan can be viewed at its online platform: actiononalbinism.org
12. What are some of the things that keep you busy during the Covid-19 lockdown?
Honestly, I am glad not to be kept busy. The last few years have been too busy and so I welcome this forced calm.
That said, I am still working full-time but have some opportunities to return to some hobbies e.g. learning a new language. I am currently learning Swahili and Spanish.
The lockdown has also allowed me to be more appreciative of everything I often take for granted: a new day, water, and all the health workers at the frontlines of the battle against COVID-19.
13. Would you ever consider getting into politics?
Yes, if the right opportunity arises.
14. Who are your top 5 favorite Africans dead or alive?
Benedict Daswa, Ellen Johnson Sirleaf, Aliko Dangote, Fr. Anslem Adodo, Nelson Mandela