Mwigulu Magesa,12, center, and Emmanuel Rutema, 13, both of Tanzania, are fitted with prosthetic limbs with Lance Harms on July 23, 2015, at Shriners Hospital for Children in Philadelphia. | Matt Rourke/AP
As the commemorative decade of the United Nations’ resolution establishing the independent expert on the rights of persons with albinism approaches, it is pertinent to review the progress made. It is important to draw attention to gaps and limitations in the existing approach to end attacks and other violations targeting persons with albinism.
One must commend the UN for the resolution and the appointment of an independent expert on the rights of people with albinism in 2015. This step signifies a demonstration of political will and commitment to ending stigma, discrimination, and violence against people with albinism. It indicates that the world can rally together against a common threat to human well-being.
However, I have had the opportunity of attending meetings and conferences in Geneva and recently in Lancaster where stakeholders from across the world discussed ways to address this problem. I have noticed some missing links in the approach to the issue. And I worry that if these limitations are not addressed the resolution will not achieve the desired goals.
An African child living with albinism. | Ana Yturralde
At these meetings and conferences, campaigners highlighted pertinent aspects of the problem. They explained the misconceptions about albinism, that it was a noncontagious, and genetically inherited condition. That albinism affected people regardless of race, ethnicity, gender, religion, or belief.
Campaigners also noted some health risks that people with albinism run including deadly skin cancer. They provided statistics on attacks and killings of people with albinism in various countries, mainly African countries such as Tanzania, and Malawi. They provided graphic images of victims and survivors, and the costs of body parts of people living with albinism.
Campaigners explained efforts that state and nonstate agencies had made in addressing the problem like arresting and prosecuting attackers, and killers, providing sunglasses and other medical supplies. And that’s usually it.
From my observation at these meetings, the approach to ending abuses of people living with albinism is Eurocentric and fundamentally flawed. This approach is hurting the campaign. Unless efforts are made to rectify the imbalance, I submit that the desired objective of this resolution will not be realized. The attacks and killing of people with albinism will continue. Why do I say so?
In all the events that I have attended, campaigners tried to emphasise the need not to call people living with albinism, albinos. They noted that the term albino was derogatory and reduced the individuals, or defined them by nothing more than their skin condition. I agree that derogatory terms should not be used in describing people with albinism. But my question to these campaigners is this: How many people in rural communities in Africa where these killings and attacks take place speak English? How many Africans know or are aware that people with albinism are called albinos? How many people know the distinction between albino and people with albinism?
People across Africa call persons with albinism local names; they use non-English terms to describe them. At a meeting in Lancaster, panelists from Tanzania told attendees that miners and fishermen in some towns perpetrated these killings and attacks. Now, how many of these miners and fishermen in Tanzania call people with albinism albinos? So the campaign to not call people with albinism albinos is for who? The non-English speaking attackers and perpetrators in Africa, or where?
In Nigeria, people call persons living with albinism by various names including Oyibo, which means a white person. Others refer to them using slangs that mean ‘yellowish skinned persons’, which is indeed derogatory. Yes, it is important to urge people not to use demeaning terms in describing people with albinism whether in English or in any other language. But is the name that people call persons with albinism the main issue? Of course not.
The main problem is the misconception about the skin or bodies of persons with albinism. Similar misconceptions exist about the people with a hunchback or in some places, a bald head. Unless these misconceptions are dispelled and the misinformation corrected, those campaigning against attacks and violations targeting people with albinism are only papering over the problem. They are executing a superficial program.
At meetings and conferences that I have attended, speakers and presenters did a good job of describing the situation and explaining how perceptions and beliefs about the skin of people with albinism motivated attacks and killings. But something was missing. They refused to take a position regarding these beliefs and perceptions. They refused to highlight them as mistaken ideas.
These meetings and conferences failed to provide necessary leadership and guidance. And when confronted, presenters and campaigners made excuses. Some said they were only researchers, not activists. But wait a moment, some of these people were from affected countries and regions. How does being a researcher or an academic stop them from taking a position on the issue?
Others especially those from Europe or America said they did not want to be accused of racism or neocolonialism. They did not want to be accused of imposing their ideas on Africans. Interesting. Now the question is: Why get involved? Why prosecute a campaign when one is not ready to provide the necessary leadership and guide? Why spend money and time holding conferences and meetings if one does not want to take a position or make such a position public?
During the pandemic, the World Health Organisation did not spend time convening meetings and describing misconceptions about COVID-19. It issued statements. The WHO dispelled misinformation and disinformation about COVID-19. It called out violators. The WHO provided leadership and guidance to people, governments, and institutions across the globe. The UN and other campaigners should do the same thing in the case of protecting persons living with albinism. They should tackle the problem at its roots. They should stop papering over the issue. Campaigners should treat the killing of people with albinism with the urgency that it deserves. They should not hold back any information, position, or proposition that could help the cause.
The UN and other agencies should devote significant resources to educating the public, not to organizing meetings and conferences that say and repeat the same thing year after year. They should prosecute public enlightenment campaigns that correct the misconceptions and misinformation about the skin or body parts of people with albinism.
The UN and other stakeholders should supply the missing link, as well as the informational and conceptual missing link, in this campaign. They should make it categorically clear that the belief that the sacrifice of the skin or body parts of people with albinism will bring luck, wealth, money, or success is a baseless superstition that people should abandon and discard. Campaigners should not mince words in making this declaration and in taking this important message to communities and countries where the attacks and killings take place.
Advocates, campaigners, scholars, and activists in Africa should help the UN and other international bodies supply this missing link and fulfil this crucial role and responsibility. They should ensure more robust campaigns and effective outcomes in the next decade of the resolution.
Leo Igwe, who directs the Advocacy for Alleged Witches, is a human rights activist and the founder of the Nigerian Humanist Movement. He was the Western and Southern African representative to IHEU, the International Humanist and Ethical Union. He can be reached by email HERE.
The opinions expressed in this article are solely those of the author.
