Hello Love, This Skin family!
We are so proud to bring part two of “In Conversation”. Chatting to people with albinism on life, their upbringing, their aspirations, but mostly on what has inspired their strength and bravery.
We are so honoured to have spoken to Ikponwosa “IK” Ero this week. She is the first UN Independent Expert on Albinism, and has held the office for the past two years!
We spoke to her about her post with the UN, her life, challenges faced by persons with albinism – and what she thinks is our way forward.
Photo Credit: Getty Images
1. Thank you again for being part of this series – Tell us a bit about how you’ve navigated growing up hyper-visible, how did you interpret what you were receiving from people around you, and at what point did you realize your ‘difference’ from others?
Being hyper-visible was not challenging on its own. I did not know I was different until I was around age 4. The impact of the difference was better understood around age 7. I quickly learned that I caused people to react with any or a mixture of mockery, derision, disgust, laughter or amazement. Initially I was confused and asked my mother to explain why I was different. For all I cared, I no longer wanted to be different – now that I saw the consequences. She gave me some explanation that helped such as “God made you this way so others – who are not God – have no right to question God,” etc. These helped me accept myself on an intellectual level but were weak in the face of taunts from many people.
2. Often, I’ve heard some PWA say a variation of “As much as I can, I want to be treated the same as everyone else, and feel normal, not to always be the centre of attention, or questioned about having albinism” Do you think we should/can escape talking about albinism, as people with the condition? – do we have the inherent responsibility to keep educating others about the condition?
This is a difficult question to give a simple answer to. It largely depends on the person and where they are on their journey with albinism. There was a time when I felt no need to explain myself to people. I was fatigued of the issue defining me and felt that I needed rest from discussing it. However, I have now accepted that I can never take a break from the issue. We are a minority in number so we will likely always surprise a few people for many years to come. Consequently, I have matured into the role of persistent teacher with a high amount of patience that I never thought was in me. In the end, I don’t think we have an inherent responsibility to keep teaching but the responsibility might get imposed on you anyway. I eventually chose to accept the imposition; others may not. I cannot decide for them.
3. Your post with the UN – how did it come about and what is your mandate?
The UN human rights council got reports of hundreds of attacks against persons with albinism and ultimately wanted to address it. Creating a mandate is one of the ways that the Council dedicates extra time to an issue that they feel needs their attention but to which they may not have time to tackle directly as a larger body. Consequently someone is assigned to the mandate to do the necessary tasks envisaged and he or she reports to the Council periodically. My mandate is to do several things including tackle the issue of attacks against persons with albinism with an end goal of stopping them completely. This will also include addressing relevant issues such as discrimination, stigma and other root causes of attacks including harmful spiritual and cultural beliefs and practices.
4. Where do you think we stand – particularly on the continent, with changing perceptions about albinism, and fighting for the rights of PWA?
We are making good but slow progress on the continent. I am optimistic though because most governments are willing to cooperate with my mandate for example. Many citizens have also shown a high amount of resolve to end the attacks. The political and collective will is present generally but converting these to concrete, effective and sustained results remain the challenge. However I can say that we have reason to hope. Records of attacks are reducing in the aggregate even though they continue generally, there are also some investments being made by government, civil society activists and myself in terms of filling gaps in law, raising public awareness and improving self-advocacy among persons with albinism themselves.
5. At a recent conference we attended, you spoke of the difficulty many nations have in classifying albinism (is it a disability or not /What are the implications of policies stating such) What are your thoughts on this?
Disability according to the UN Convention on the Rights of Persons with Disabilities covers long term impairments of a great variety that are not accommodated by the government. Persons with albinism mostly have a vision impairment (albeit to varying degrees). This factor alone means that we ought to enjoy the rights of reasonable accommodation and others covered in the UN Convention on the Rights of Persons with Disabilities. There is little awareness about this fact and we need to educate both governments and civil society on this and how it may be achieved in the context of persons with albinism.
I also wish to add that persons with albinism are also covered by laws protecting people from racial discrimination. Even though we are not a “race,” the term “racial discrimination” in the UN Convention on the Elimination of Racial Discrimination has been interpreted to include discrimination based on “colour” as a factor independent of race. Accordingly, the experience of persons with albinism can be robustly understood to be an intersectional one. This means we face more than one or “multiple” and “intersecting” forms of discrimination highlighted in the area of disability and in the area of colour. Aside from this two key areas, there could also be other areas of discrimination that would aggravate a person’s situation and/or enjoyment of her human rights e.g. if a woman with albinism is also HIV positive.
6. What do you know for certain you want to have achieved once you leave your current office?
I hope I leave with no attack happening or that the last one was last heard of long before I left. I also hope that there are concrete and sustainable steps put in place to prevent and treat skin cancer in all affected countries as the condition kills far more persons with albinism than the attacks being reported. I also look forward to ample awareness raising and self-education for persons with albinism themselves so that the condition will be less a novelty and more of a condition of life. Further, I hope that persons with albinism would be far more empowered to engage with the international community through their growing number of civil society groups. I also hope significant inroads would have been made to address and stamp out root causes of attacks particularly witchcraft related beliefs and practices which have spurred the attacks.
7. To any person with albinism reading this, what would you like to say?
Be the best version of yourself and the world will learn far more from you than from stereotypes and myths.
UN Albinism – Ikponwosa Ero, Personal Page Facebook
Curated by Sethu Mbuli