In the last decade, across 28 countries in Africa, there have been more than 600 reported cases of killings or mutilations of persons with albinism - a rare, non-contagious, congenital condition characterised by a lack of pigmentation in any or all of the hair, skin and eyes. Under international law, countries have a legal obligation to protect persons with albinism from human rights violations, attacks and discrimination. A new report by the International Bar Association's Human Rights Institute (IBAHRI) concludes that current approaches to albinism have fallen short of this obligation, and persons with albinism continue to be victims of human rights abuses.
Often, violations go unpunished by governments, with many survivors traumatised and forced to flee their homes, and sometimes their countries, to seek protection elsewhere. In addition, authorities have failed to meet the health and other specific needs of persons with albinism routinely facing prejudice and stigmatisation from local populations. These issues will be discussed at the launch of the IBAHRI report on 8 June 2017 at 17:30 at Chatham House, 10 St James's Square, London, SW1Y 4LE. The United Nations Independent Expert on Albinism Ikponwosa Ero is the keynote speaker.
Titled 'Waiting to disappear' International and Regional Standards for the Protection and Promotion of the Human Rights of Persons with Albinism, the report focuses mainly on Sub-Saharan Africa, providing a detailed overview of applicable international and regional laws, norms and interpretative frameworks. It states that the rights of persons with albinism have been considered solely within disability or criminal law frameworks, and that this is a mistake. The IBAHRI posits that a holistic approach is required, encompassing equality and non-discrimination law, the right to education and the right to health, as well as disability rights and criminal law.
Detailed in the report are a number of recommendations for states and the international community to protect the rights of persons with albinism, ensure accountability and guarantee equal access to health, education and work, including:
Enact, when necessary, clear laws criminalising and punishing any acts of violence, including harmful practices against persons with albinism, clarifying ambiguities, where they exist, in laws relating to witchcraft and traditional health practice.
Guarantee the right of victims to prompt, adequate, fair and effective reparation, including compensation and rehabilitation.
Take all necessary steps to strengthen international cooperation by multilateral, regional and bilateral arrangements for the prevention, detection, investigation, prosecution and punishment of cross-border crimes affecting persons with albinism, notably trafficking of persons, children and body parts.
Adopt the Draft Protocol on the Rights of Persons with Disabilities and encourage ratification by all African States.
Urgently implement programmes and plans of action to address multiple and intersecting forms of discrimination affecting persons with albinism, including awareness-raising campaigns, human rights education and training among the judiciary, public security personnel, healthcare personnel, teachers, community leaders and family members.
In the report's foreword, Ms Ero comments that the inclusion of practical recommendations 'means that this paper will also be highly useful to a variety of stakeholders, including policy-makers, academics and civil society activists. In particular, it will equip advocacy groups and communities of persons with albinism, their family members and representatives with fundamental and effective tools to articulate their situation in human rights language. This will in turn remind governments of their legal duties and ultimately hold them to account.'
She concluded that: 'the use of standards laid out in this paper, particularly the implementation of its recommendations, promises to contribute to the eradication of the real and palpable fear that has crippled persons with albinism and their families in the wake of attacks'.
Albinism affects people worldwide, regardless of race or ethnicity. It causes vulnerability to sun exposure and bright light. Visual impairments of varying degrees are common, and there is an increased risk of developing skin cancer. In Sub-Saharan Africa, women and children in particular are killed or mutilated, and graves are desecrated to obtain body parts to be used in witchcraft rituals.
Peter Ogik of Uganda is one of the case studies included in the report, and was the inspiration for the report's title. In the below extract, he describes how he spent his childhood 'waiting to disappear'.
'There were two of us in my family with albinism - my sister and I. When I was young, I was told that I would not die. They said I would disappear because people like me - people with albinism - are not like other people and do not die. I spent my childhood waiting to disappear. Every day I wondered whether that would be the day I would disappear until the day my sister died in a tragic car accident. That is when I realised that, just like everyone else, people with albinism die.
There were a lot of people at my sister's funeral. At first, I thought it was because we had many friends, but I soon discovered it was because people couldn't believe someone with albinism had died. They wanted to see for themselves that she had actually died.
My father spent many nights sleeping next to my sister's grave. He wanted to make sure no one came to take her body because people think you can get powers from body parts of persons with albinism. They don't know that we are just human like everyone else.'
Notes to the Editor
The report 'Waiting to disappear' International and Regional Standards for the Protection and Promotion of the Human Rights of Persons with Albinism, can be downloaded from bit.ly/2qIk643.
To download an abridged version including the Foreword, Executive summary, and Conclusions and recommendations, please visit: bit.ly/2rjFwaA
To register for the launch of the report on Thursday 8 June 2017 at 17:30 at Chatham House, 10 St James's Square, London, SW1Y 4LE, click here. The event is free, and will be followed by a drinks reception. Registration is essential.
The International Bar Association (IBA), established in 1947, is the world's leading organisation of international legal practitioners, bar associations and law societies. Through its global membership of individual lawyers, law firms, bar associations and law societies it influences the development of international law reform and shapes the future of the legal profession throughout the world.
The IBA's administrative office is in London, United Kingdom. Regional offices are located in: São Paulo, Brazil; Seoul, South Korea; and Washington DC, United States, while the International Bar Association's International Criminal Court and International Criminal Law Programme (ICC & ICL) is managed from an office in The Hague, the Netherlands.
The International Bar Association's Human Rights Institute (IBAHRI), an autonomous and financially independent entity, works to promote, protect and enforce human rights under a just rule of law, and to preserve the independence of the judiciary and the legal profession worldwide.
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