Exclusive Interview With Ikponwosa Ero, UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism

 

Globally, June 13th is recognised as International Albinism Awareness Day. It is a day set aside to raise awareness on issues relating to albinism. I spoke to Ikponwosa Ero, United Nations Independent Expert on the Enjoyment of Human Rights of Persons with Albinism on the challenges African women with albinism face, efforts of the United Nations in protecting the rights of people living with albinism and how to change negative narratives around albinism.

 

Ikponwosa Ero: Image Open Society Foundation

The Female Orator: You’re a big advocate for people with albinism. What inspired you to take such an active role?

Well, I have albinism. So, this is a huge motivator. I have an educational background that I thought was suited to do this job as I am a lawyer by training. I also have experience in Human Rights work and in advocacy. The combination of personal and educational factors plus my understanding of albinism from the let’s say the Nigerian and African perspective and also outside of Africa as well having lived in Canada for a while led me to advocate for people living with albinism.

My understanding of global issues about albinism is also quite strong. So, all these experiences came together and I thought it was something I could do to help people not go through what I did in terms of the suffering and to also help people live a better life. So, it’s my way of trying to support others as much as possible.

The Female Orator: For how long have you been an advocate?

I have been an advocate since 2009 in terms of full blown work. In terms of small projects that’s probably since 2006. I would say I have about 11 years in total supporting the issue. Over the years the advocacy has become more intense going from my own little projects to working for other people who had NGOs on the issue to today the United Nations. It has really gotten more intense and the platform has expanded slowly. That’s a good thing.

The Female Orator: In an interview with Aljazeera you mentioned people living with albinism are faced with “systematic extinction. Is this still the case?

Well, that interview was in the context of Malawi. At that point the rate at which the attacks were happening was alarming and even now I cannot guarantee that things are still not happening because there is a difference between reality and what is reported in a lot of these countries. For example, when I went to Malawi on an official visit, there were close to 70 cases but six months after I left, those numbers almost doubled. They became about a hundred and twenty which shows people came and started reporting more cases. Which means generally they are not reported.

So, I did choose strong wording. I wanted to draw attention to something that was quite serious then. This is a small group and if a small group is having records of attacks, happening every single month slowly that group will be affected in an endangered species kind of situation where over time you will have less of them. Is it still happening today? Reported cases are reducing but I cannot guarantee that reported cases are the reality. So, I can’t say I’m taking away that statement 100 percent. I could say reported cases show trends are reversing but I cannot guarantee that it’s completely stopped.

Ero (second from left) in 2015 with some young victims of attacks: Image Trek Magazine

The Female Orator: Would you say albinism is harder for women than men?

Yeah, of course, it’s harder for women. Everything is always harder for women as you will know from your gender work. The ones that are specific to women with albinism are all these myths that there are benefits if you have a relationship or sexual intercourse with a woman with albinism. There’s a myth that intercourse with a woman with albinism will curse HIV AIDS and so a lot of women with albinism in the continent get raped. I have received quite a few reports on this. That’s one thing we face especially the poor women in rural areas with the condition.

Also, women with albinism get easily abandoned. A lot of women have boyfriends or husbands who like them personally but due to societal pressures abandon them. Also, all the cultural things that apply to women apply to them. It’s just that theirs is intensified by albinism. Another thing, young women with albinism complain to me they can’t have boyfriends as they actually cannot trust men. You know when a guy approaches them they are not sure what his intent is. Is this a real person or someone who wants to cut me up and use me for juju? So, there is always that fear. There have been situations where a boyfriend has pretended and then used that to kill.

Definitely, the women have more of an issue. There is also the other side that has to do with women who give birth to children with albinism but themselves do not have it. These women face challenges like abandonment from their spouses. There is a lot of blaming without people realising that albinism happens when the mother and father have the gene. So, he is the problem as much as she is. But the lack of knowledge leads to a situation where mothers of children with albinism are abandoned. It’s a common problem the abandonment of mothers with children with albinism. So, I would say in total regarding the discrimination of people living with albinism women bear most of the brunt in most situations.

The Female Orator: How has the discrimination against women with albinism affected their ability to lead a normal life?

The impact of these myths associated with albinism makes it hard for women with the condition to trust in relationships due to fear. In African societies, for example, being in a relationship, getting married and having children are very important and a source of privilege and in some cases rights and respect. So, them not being able to have normal relationships obviously affects them. It’s hard for them to form even friendships. There is a constant extra layer of fear and a problem with trust. Psychologists have said relationships are some of the most important things in life, not money.

When you have something affecting your ability to form relationships then you cannot have a normal life basically you’re just gonna be trying and managing for most of the time. That doesn’t mean people with albinism don’t have people that love them. So, the impact like I said before is abandonment by people who should care for them, fear because they know they cannot trust anybody including their own family members who have been involved in attacks. Those are some of the issues.

Ikponwosa Ero: Image Aljazeera

The Female Orator: What are some of the misconceptions associated with albinism?

People think it’s the mother’s fault but really it is a situation that comes from the father and mother. So, there is no understanding of the genetics of how it happens so that’s one big one. The other misconception is the rape of women because they think that can cure HIV.  There is also the misconception that people living with albinism can bring people luck. A few years ago I once had a Nigerian man I met in Canada say to me that the person who would marry me would be lucky. I was stunned and asked why would that person be lucky?

This kind of thinking that a person with albinism brings good luck I guess has led to the most dangerous myth that if they take your body and put it inside juju then you will get good luck, you’ll succeed in your job, you’ll get promotions and all these things. Which is rather ironic because when they give birth to you people abandon you because they think you’re bad luck and then you grow up and become a source of good luck. So, it’s all a whole bunch of superstitious contradictions to show that people don’t understand what the condition is. So, those are the three key myths.

The Female Orator: How do we ensure the negative narratives around albinism are changed?

Well, the most important thing is things like this you’re doing. Even if you think you’re small, that’s how it starts if four people or five people read the article and then next time they see a person with albinism they will first of all refrain from calling names. Name calling is a big deal in Nigeria. For no reason, you walk by someone and they just see you and say ah Afin. What did the person do to you? Why did you have to react that way? What did you gain by doing it? Those are very puzzling questions. If someone comes to a foreign country and uses a racist word there’s going to be a riot. People are going to be like racism but we ourselves do the exact same thing we blame people for. 

So, it’s fascinating to me how nobody tolerates what they see as racism and then we turn around and do the exact same thing to people who are of a different colour. Like, why are we emphasising these things?  I was born and raised in Ibadan and I remember it doesn’t take like five minutes ten minutes down the road and I’ve heard at least maybe four people call me different names. I’m like why are you not minding your business? So, it’s just very basic ignorance. Imagine waking up every day of your life and you go out just to hear pretty much that every day.

So, if we have articles or basic TV slots, blogs that slowly educate people that when they see a person with albinism they don’t have to call them names that’s a huge improvement because harassment 365 days is not fun. So, if that’s what it achieves, it’ll make a big difference.

The other things that would be very helpful are two things. Albinism aside from the appearance also comes with low vision. Most people with albinism cannot see the chalkboard if you put us in a normal classroom set up. This is a disabling feature of albinism sometimes people think people with albinism can’t write or read. It’s not that they can’t, they can’t see the board. People will be like aren’t you wearing glasses. Glasses improve but they don’t correct. They are various gadgets that help like what they call a monocular. It’s like a binocular with only one lens you can use that in the classroom. A lot of children here in Canada with low vision use that in the classroom and then they see and then they do well. So its basic interventions like that really make a difference.

Also in the sun, people with albinism should wear sunglasses, wide brim hats and long sleeves to prevent sunburns.  It’s better to cover your skin if you don’t have a lotion that protects the skin from sunburns. So, health interventions would help because those spots on the people with albinism are a reaction of the skin to the sun without protection and in the long run can cause cancer. In fact, most people with albinism die with skin cancer more than the attacks and this is a very important thing that can be prevented. These spots aren’t caused by eating salt or other things like that usually it’s because of exposure to the sun without protection. So, the understanding of these things help.

The Female Orator: Can you explain what the United Nations is doing to safeguard the rights of people living with albinism?

I have been reporting on the situation. So, there are now a few good UN reports on the issue describing the issue in detail. I have been able to go into countries to gather data. For example, I have been able to go to Malawi to see things for myself. I have also come up with a regional action plan that has been taken to the African Union for endorsement. So, I will say the most prominent thing is the regional action plan. A lot has been invested in getting people to do more research so we have more data to make decisions with.

We have also attracted a bit of funding for albinism groups. I was able to get more partnership to develop the action plan and consultation. Now, it remains the implementation. So, I’m gonna start a huge drive looking for funders because these things cost money and these governments don’t necessary have money to spend on this issue. Yeah, a lot has been happening. If I start listing them we will be here for a while.

We have also attracted a bit of funding for albinism groups. I was able to get more partnership to develop the action plan and consultation. Now, it remains the implementation. So, I’m gonna start a huge drive looking for funders because these things cost money and these governments don’t necessary have money to spend on this issue. Yeah, a lot has been happening. If I start listing them we will be here for a while.

Ikponwosa Ero UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism speaking at a Disability Rights Conference in Pretoria: Image Standing Voice

The Female Orator: Would you say governments in Africa are taking appreciable steps towards protecting people with albinism?

Yes, they have. The issue now, of course, is implementation. For example, in May I was in Niger at the African Union Human Rights Commission and I proposed to them a plan of action basic things for them to do and they accepted it as their regional action plan on albinism. That’s a big game changer and a milestone on this issue. Now, it is up to them and me to find ways of implementing those steps. The fact that they accepted that action plan shows that they want to do something. The issue now is the doing. So, who’s going to do it and who’s going to pay. Those are the issues and that’s where I come in. I am trying to get a bit more foreign support.  A mixture of stakeholders will lead to more progress. So, I’m trying to get more foreign support that will work with local NGOs on albinism. This will lead to more partnerships where we get resources for the people to take charge of the solution.

The issue now is the doing. So, who’s going to do it and who’s going to pay. Those are the issues and that’s where I come in. I am trying to get a bit more foreign support.  A mixture of stakeholders will lead to more progress. So, I’m trying to get more foreign support that will work with local NGOs on albinism. This will lead to more partnerships where we get resources for the people to take charge of the solution.

The Female Orator: Having lived in Nigeria and now Canada would you say the attitudes are different to people living with albinism?

Yes of course. First of all, here it is more rare.  Africa has more people with albinism than Canada that’s for reasons more detailed than I can explain here. Albinism here is like 1 in 17,000 people. Whereas in Africa, albinism is anywhere between 1 in 1,000 to 1 in 15,000 depending on where you are living. Some countries have a bit higher some a bit lower. In the East of Nigeria for example, the estimate is 1 in 1000 whereas in like the North its 1 in 10,000 something like that.  So, it varies a lot. But of course, here they don’t attack people physically they don’t believe in juju so that part is out. Their main problem is mostly in name calling and this affects children in school.

So, the children get verbal harassment but I noticed that some schools are working on stopping bullying among children generally. Here they get a lot of bullying on their looks and sight problems.  Also, in movies, the person with albinism is always doing something silly or driving a fast car and shooting a gun. Which is actually not true in reality because most of us aren’t allowed to drive because of our vision. So, it shows you that they are ignorant about the truth but they want to use the appearance to sell their films. Those are some of the issues that they face here mostly social problems.

But of course, here they don’t attack people physically they don’t believe in juju so that part is out. Their main problem is mostly in name calling and this affects children in school. So, the children get verbal harassment but I noticed that some schools are working on stopping bullying among children generally. Here they get a lot of bullying on their looks and sight problems.  Also, in movies, the person with albinism is always doing something silly or driving a fast car and shooting a gun. Which is actually not true in reality because most of us aren’t allowed to drive because of our vision. So, it shows you that they are ignorant about the truth but they want to use the appearance to sell their films. Those are some of the issues that they face here.

The Female Orator: Any other thing you would like us to know.

Nigeria is one of the last places that still use the word Albino a lot. People have slowly switched to the term ‘persons with albinism’. The difference is that albino makes the person and the condition the same, whereas saying that’s a person with albinism it becomes a tool for advocacy where people are able to understand first the person is a person and they happen to have this condition called albinism.

So, when we use the term persons with albinism it makes a big difference in how people look at a person with albinism especially because there is also a myth in many countries that people with albinism are ghosts. So, when we use the term persons with albinism this emphasizes their personhood and it helps in understanding the condition and advocacy.

The Female Orator: Thank you so much for giving me 30 minutes of your time. I wish you all the best in your future endeavours.

Read more about the efforts of the United Nations protecting the rights of people living with albinism at albinism@ohchr.org and follow Ikponwosa Ero at @unalbinsim on Facebook , Twitter and Instagram.

Follow the conversation on social media #NotGhosts.

This interview has been edited for length and clarity.

 

 

 

 

Post Author: Adebisi

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