Once when confronted with the question of identity, the thespian and Nobel Laureate, Professor Oluwole Soyinka, stated that one is not defined by what name one is called by but by what name one answers to. Coming into the real world where everyone seems to still wallow in holding on to largely unsubstantiated age-long customs and traditions; not minding how deleterious they may be, it becomes very heartening with the rare story of ones,though they have been made differently, who have risen from the ashes of societal crochet and have dedicated themselves to making that difference we all so crave. Born into an enlightened family of a Professor father and a Teacher mother who imbued in her the freedom that she needed to aviate the fairy-tales-laden air of the world she was thrown in, this ebullient and infectious Benin-born lady,now living in far away Canada, has dedicated herself to advancing the course of the Albinos all over the world.Today, The MidWest Journal attempts to unravel the inner workings of the mind of this young advocate and willing rallying point for every at-risk Albino, Ikponwosa Lauretta ERO.In recognition of her life-long work in her private capacity in ensuring the dignity of the Albino she has just recently been appointed into the United Nations’ inner circles as The U.N. INDEPENDENT EXPERT ON ALBINISM to continue the unique story of her life.
What’s your full name?
Ikponwosa Lauretta ERO (I took out the “m” in my Edo name to enable more people pronounce it with ease as it is such a beautiful name)
Kindly let us know what kind of family you have grown up in
A wonderful family with six children. I am 5 of 6. My father is Dr. Isaac Izogie Ero, a retired professor of forestry, son of the late Orhirhi Ero of Urubi-Iyaro who in turn is son of the late Chief Izedomwen Ero. My mother is Mrs. Comfort Adesuwa Ero, a retired teacher, daughter of the late Chief Simeon Igbinidu Iyase, the Uwangue of Udo and the father of the current Iyase of Udo.
What schools did you attend and what areas of study have you specialized in
I grew up in Ibadan, and attended Sacred Heart Private Primary School. Then I attended Federal Government Girls’ College, Benin City, Edo State. My University studies were all in Canada where I acquired degrees in Political Science and International Relations at the Undergraduate and Masters levels followed by a degree in law.
Congratulations on your recent appointment by the UN, please let us know what it’s all about and what’s expected of you
Thank you. The role can be understood as that of a special reporter on a particular issue of concern to the UN. It is also a monitoring role and an advocacy role. In a sense, it is a role that allows the UN to pay particular attention to certain issues by “outsourcing” the work so to speak to particular individuals with experience and expertise in the relevant field. Yet, it is not a full outsourcing in the sense that the work done by people like me feed into the UN system and is also supported by the system as well.
Does this mean you are an employee of the United Nations?
Yes and no. Yes, in the sense that I am delegated by them on the issue. No in the sense that I have independence from them in the doing of my work. My work has to have substantive integrity and independence, avoiding any undue influence or control by others. I am also not on the UN payroll per se. This helps to enhance independence as well.
Where would you be officially based?
I will still be based in Canada, where I live.
Did you apply for the position or was it a recognition of your past efforts with Albinism
Both. People who knew me and my work on the issue recommended that I apply or encouraged me to do so. Once you apply, your experience is weighed in. A shortlist of candidates is presented to the president of the UN human rights council who makes his pick from the list.
Kindly describe the typical plight of the albino especially those based in Africa generally and those in Edo/Delta specifically
In many countries in the region of Sub Saharan Africa, there have been reports of physical attacks against persons with albinism. There have been 25 countries with these types of attacks. Some are more systemic whereas others occur less often and can be seen as more sporadic. Overall though, nearly all countries in the region show concerning levels of discrimination including unrelenting name calling, bullying of children, isolation and exclusion from employment, lack of accommodation in school especially regarding the vision impairment that often comes with albinism. Also, lack of health support to prevent skin cancer that kills most persons with albinism in the region at a very early age – and yet is a preventable disease.
In what ways do you plan to intervene?
Aside from reporting and monitoring situations, I hope to work with countries that have systemic attack records on ways to stop and prevent them. Also to bring support in the areas of health and vision by harnessing best practices where available and to work with civil society and governments to replicate these best practices in countries where they are lacking or absent.
Tell us about your personal experiences as one living with the condition
It was tough. As a child, it is very difficult. You get teased and taunted nearly everywhere you go. And as a child you don’t understand and you start hating yourself and getting angry at God. Most people never use your name; it is always albino, ‘oyinbo’, ‘eyaen’, etc. Children run away from you or laugh at you. Teachers don’t believe you when you say you can’t see the board or they forget and are too frustrated about other things to pay more attention to your “wahala.” Staying indoors to stay away from the sun and fearing if anyone would ever give me a job once I was an adult. As an adult, things changed a lot because people become more sympathetic. In spite of all the challenges, I have been fortunate in many ways relative to many people with albinism I know in the region.
What role has your family played in helping to shape your outlook towards the situation?
My family treated me like any other child. I was loved, cared for, praised, and played with. I also had chores, was reprimanded, punished etc like others. I often forgot I was “different” until I stepped outside the home.
Have there been times in your adult lives that you felt like you would not be able to take it anymore
Yes – somewhere between ages 11 and 18, I struggled a lot. One time, at age 13, I took a bike from FGGC Benin to my home in Ekosodin and the bike guy was rough and I almost fell off so I held him briefly for balance. He cursed and yelled and said I dare not touch him. I said I was about to fall, he ordered me off his bike instead using a series of curse words including those about my condition. It was one of the very many moments that I knew life would be a HUGE challenge for me. For other incidences like that, I just went home and prayed or cried or both until I felt relieved, got up and carried on with my life.
How do you intend to spread the enlightenment to the remote areas where ignorance is expected to be more widespread?
This is where government help would be most needed. I hope to work with government to roll out intense and sustained awareness campaigns into these areas including using outdoor cinemas and community radio shows.
What is your take on those seeking faith cures? Have there been cases where it’s been effective? i.e specific cases of reversal of the condition
Albinism cannot be cured. Unless a miracle happens and I have not heard of even one case like that in my entire life and career. There are some scientific experiments related to giving pigmentation pills to babies to give them some colour because this can also improve eyesight but these are all experimental and not ready for execution as far as I know.
What steps should a person living with the condition take to be able to live a normal life?
First the parents have to love their child a lot. This will almost guarantee success for that child. Once the parents have done that or are doing that, they have to help the child at school. This includes going to school to plead with the principal that the student should sit close to the board and/or get teachers’ notes and exam questions on paper. Also match up the child with a helpful student, exempt the child from long periods outdoors in the sun, allow him/her to wear wide brimmed hats and other sun protective clothing like long sleeved shirts and sunglasses. Once these are in place, the person with albinism has to work on being strong internally. He or she has to learn how to be an advocate for themselves and to learn to overlook disdain even while not imbibing it. He or she has to work very hard, stay honest and opportunities will arise. It will not be easy but it will be well.
Some think it’s some sort of wickedness for albinos to marry themselves and bring children who would also have to live through the condition, do you agree?
Wow, that is a tough one to comment on. I believe people should be free to choose their own spouses no matter what. Also, it is preferable to work toward changing society’s mindset toward the condition as this will not only help people living with condition but make society less harsh toward people with other visible differences. We should always remember that with certain situations, the problems don’t often lie in individuals but in collective thinking on particular issues.
You have written some materials on the subject of albinism before, tell us more about them
I have written articles on various issues pertaining to albinism. I would say the most interesting so far is the one considering the best legal framework for protecting and promoting the human rights of persons with albinism. In it, I looked at many frameworks including minorities, disabilities etc. It is still an ongoing discussion in the albinism community even though my preliminary conclusion in the paper was “all of the above.” However, in this position, I am looking forward to continuing the process and addressing the question again with more input from people with the condition and others as well.
What kind of legislation would you want to see put in place in Nigeria and other African countries to help alleviate the suffering of those with the condition
The incorporation of a policy on the issue into the ministries of health and education among others. My understanding is that there are some inroads made here by civil society in Nigeria so I look forward to working with them on moving these forward.
In your home state of Edo what are your plans to engage the state Government in your project(s)
I hope to visit Nigeria in 2017 in capacity of my UN role. At that time, I hope to work with the national government and all state governments including and hopefully the government of Edo State. With state government, it would be helpful if they collaborate in rolling out awareness campaigns on the issue.
What should a person living with the condition in Africa look forward to in the coming year?
We will be working to end physical attacks where they occur including through outcome documents of specific measures to take and a Declaration of commitments from all countries. Also watch out for June 13 – the second international albinism awareness day which will be a major platform for bringing visibility to the issue. Lastly, I will commence work regarding the health issues: skin and eyes which should hopefully roll out from the end of this year all through 2017 and beyond.
Thank you very much for taking your time to share your thoughts with us and we wish you the very best in your endeavor
Thanks so much and please keep me in your prayers.