A Conversation with Ikponwosa Ero, Independent Expert on the enjoyment of human rights by persons with albinism

Chelsey Legge (4L JD/MPP)

Albinism is a relatively rare, non-contagious, genetically inherited condition which most commonly results in the lack of melanin pigment in the hair, skin and eyes. The absence of melanin means persons with albinism are especially vulnerable to skin cancer and other damage from the sun - skin cancer tends to kill most persons with albinism before age 40 - and their eyes are often sensitive to bright light. Additionally, the physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which leads to marginalization, social exclusion, and various forms of stigma and discrimination.

Persons with albinism face several human rights challenges including discrimination based on colour; discrimination based on disability; special needs in terms of access to education and enjoyment of the highest attainable standard of health; harmful traditional practices; violence, including killings and ritual attacks; trade and trafficking of body parts for witchcraft-related purposes; infanticide; and abandonment of children.

Since January of this year, the International Human Rights Program (IHRP) has been providing research support to the United Nations (UN) Independent Expert on the enjoyment of human rights by persons with albinism, Ms. Ikponwosa Ero. Currently, Ms. Ero, with additional support from the University of Pretoria (South Africa), is working with the Pan African Parliament to develop guidelines on harmful practices related to manifestation of beliefs in witchcraft. Persons with albinism constitute a key victim group for the purposes of the guidelines; other victim groups include women, children, the elderly, and persons with disabilities more broadly.

The IHRP students involved on this project – Madeline Torrie (2L), Nicole Thompson (2L) and I  – have conducted research into the literature on harmful traditional practices; research on best practices in balancing concurrent rights such as freedom of religious belief and cultural rights; and comparative research on effective legislative frameworks for combating harmful practices. This month, as our involvement in the IHRP clinic project wraps up, I had the opportunity to chat with Ms. Ero about her experiences as a human rights advocate, both before and since the inception of her mandate at the UN.

Ms. Ikponwosa Ero speaking at the European Days of Albinism meeting in Norway, March 2018.

Ms. Ikponwosa Ero speaking at the European Days of Albinism meeting in Norway, March 2018. Credit: Unknown.

How did you come to work in the human rights sphere?

“I became involved in the human rights sphere through a combination of several human and  providential reasons. First, I am a person with albinism from sub-Saharan Africa, Nigeria to be specific. I had exposure to human rights generally and in international human rights specifically through my background and training in law in Canada. I worked briefly at the Department of Justice in Canada, after which I worked as an international advocacy and legal officer at Under the Same Sun, an international NGO whose main purpose is the advancement of the enjoyment of human rights by persons with albinism. All of these experiences and skills came to a head in 2008, spurred in part by disturbing reports of physical attacks against persons with albinism. I recall sitting in my comfortable room in Calgary in 2008, telling myself after reading a report of an attack against a person with albinism: you can either ignore this, and hope that it will go away, or you could be a part of the efforts to make it go away. One option was comfortable and the other was not. However, I knew deep inside – both morally and logically – that there was only one true option and it was the latter. Essentially, I considered that I had a unique combination of skills and experiences which could be put to good use at the service of my fellows with albinism.”

Can you tell us about some of your experiences prior to becoming a UN Independent Expert?

“Before becoming a UN independent expert, I spent my working days at Under The Same Sun, writing numerous human rights and advocacy reports on the enjoyment of human rights by persons with albinism. Most of these were submitted to the UN and African Union (AU) mechanisms. I also engaged deeply in advocacy activities, from your predictable panel discussions, to chasing down key persons in the halls of the UN and AU. I ran after Ambassadors, Commissioners and Officers. I learned to make a “sales pitch” on the human rights of persons with albinism, and to set up instant offices on the floor of building corners where I could whip up and print advocacy documents as needed. Nothing in life prepared me for this and it was really out of character. After spending months visiting victims of attacks, images of their missing limbs and cries haunted me and burned off any residual shyness and embarrassment that would otherwise have hampered my advocacy efforts. I also served as expert witness in several asylum cases, and in other cases provided affidavit and other legal support to lawyers representing asylum-seekers with albinism.”

What are your responsibilities in your role as Independent Expert?

“Like in all other thematic mandates at the UN Human Rights Council, I have general duties such as reporting to the Council and to the General Assembly, and visiting countries for fact-finding and first-hand assessment of the situation. My main focus in this mandate is to end the attacks against persons with albinism and to tackle the root causes of these attacks. Consequently, I spend a lot of effort on the region of sub-Saharan Africa where violations against persons with albinism are severe. In so doing, I meticulously search for good practices and also seek out partners to replicate these good practices at the local and national levels.

I also prioritize research, particularly research on albinism worldwide. Since this issue has been neglected for centuries and persons with albinism have suffered and continue to endure great violations, it is highly important to gather the facts to feed into ongoing interventions. This means I engage in frequent dialogue with persons with albinism around the world, academic researchers, and other stakeholders. Consequently, I have developed an international research collaboration which has helped to set a research agenda on the issues. Moreover, with the AU and civil society organizations, I developed a regional action plan and an online platform to monitor implementation. I also coordinate African continental activity with a task force.  Currently, the Pan African Parliament, with the support of my mandate, the University of Pretoria, and the IHRP, is developing guidelines on harmful practices related to the manifestation of belief in witchcraft. With the support of key stakeholders, this mandate has carried out numerous capacity-building events for organizations of persons with albinism and has developed numerous reports with more to come, including on albinism worldwide and the impact of these issues on women and children.”

What do you find to be the biggest challenges and rewards in your work?

“The overarching challenge faced by persons with albinism is long-term neglect of the issue resulting in the absence of their voices in the public sphere. Also, a significant number of persons with albinism globally are not aware of the laws that protect them and continue to experience various forms of suffering and neglect. Further efforts need to be made to build their capacity (particularly that of civil society leaders and advocates) on the norms and standards of human rights and on the human rights approach.

The second overarching challenge is a lack of understanding of the condition and consequently a failure to apply a robust legal framework to the experiences of persons with albinism. In the past, there was a lack of clarity regarding the application of the disability framework to persons with albinism. Nowadays, with the advent of the Convention on the Rights of Persons with Disabilities (CRPD), which broadened the understanding of disability, persons with albinism are officially a constituency of the larger group of persons with disabilities. However, in several countries, this understanding is not always strong or even present among State officials where it is needed the most. Various reports and my own experience (even in States that ratified the CRPD many years ago) confirm that very few national- and community-level personnel of the State charged with implementation of disability rights are aware of its implications, including their own duties.

What I find most rewarding about this work is that relatively little funding can change lives drastically. With limited funding, a small rag-tag army of under-funded NGOs and sympathetic friends, such as those at the IHRP, have changed the lives of persons with albinism. For example, a brief study I undertook with Canadian researchers showed that human rights research concerning the rights of persons with albinism has gone up drastically since this mandate was created. Attacks have also gone down in some countries, and some countries have reported more on this issue in light of the visibility created by this mandate. Moreover, albinism groups are receiving funding support – for the first time in most cases. While they often still struggle due to lack of support, a good number of them have operational costs for the first time. I have also been in this field long enough to watch children, including victims of attack, grow with a healthy dose of self-esteem and education that I had never imagined seeing in persons with albinism. Above all, meeting persons with albinism generally during country visits are the epitome of reward. Many say the following in various forms: “Meeting you and seeing you in this role has changed my life. I now know that we are fully human and can achieve anything,” or, “This has been the best day of my life. Seeing you in this role has given me hope that I never knew I could have.”

Do you have any advice for students interested in pursuing a career in human rights?

“Human rights is a broad and rewarding field.  If you have an interest in it, I strongly encourage you to pursue it. The process of finding work is quite competitive but the field is broad. Therefore, never get discouraged; there will be work for you to do somewhere. In this line, take advantage of every opportunity that is availed to you. One thing I have seen is many young people overlook opportunities that they thought was beneath them or which they prejudged as ineffective in the goals they have imagined for themselves.

Skills and experience in human rights are applicable in several domains beyond human rights. Essentially you have nothing to lose going down the path of human rights, especially if the cost of receiving training is not prohibitive or unreasonable. This is important because the wages in human rights are not always stupendous. Therefore, to work in the field of human rights, you must care for what you do and really desire to make a positive difference in people’s lives – independent of what would be in it for you. You will need this core motivation to overcome all the challenges that will no doubt emerge in your work. The same motivation will facilitate and ensure fulfillment and contentment in ways that money can’t buy.”