'Waiting to disappear' International and Regional Standards for the Protection of the Human Rights of Persons with Albinism

People with albinism routinely suffer violations of their human rights. Widespread ignorance and misunderstanding of the condition persists around the world, but the situation in Sub-Saharan Africa is particularly severe. The recent International Bar Association’s Human Rights Institute (IBAHRI) report ‘Waiting to disappear’ International and Regional Standards for the Protection and Promotion of the Human Rights of Persons with Albinism suggests that the legal protection of the rights of persons with albinism needs to be dramatically improved.

Albinism is an inherited condition characterised by a lack of pigmentation in the skin, hair, and/or eyes, which affects all genders and ethnic groups around the world. The rate of occurrence in Sub-Saharan Africa is slightly higher than elsewhere ranging from 1-in-5,000 to about 1-in-15,000, compared with less than 1-in-20,000 in Europe. Despite the prevalence of the condition in the region, misunderstanding about its symptoms and causes is dangerously common.

This misunderstanding has propagated myths about persons with albinism, with their body parts being sold at high prices on the black market for use in witchcraft rituals. This has result in persons with albinism being the victims of kidnappings, murder and mutilations. The rights of persons with albinism are also violated when they face unequal access to health, education and the labour market.

‘As a young child growing up with albinism in Nigeria, I remember waking up each day with my heart pounding. How was I to handle another day of taunts from the public and verbal abuse from the streets?’

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

Undertaken by the IBA Task Force on the Enjoyment of Rights by Persons with Albinism, ‘Waiting to disappear’ examines the current situation regarding the rights of persons with albinism and focuses particularly on Sub-Saharan Africa. The report includes moving accounts given by victims of abuse, and sheds light on the existent provisions in place to protect them.

The findings of the report suggest that the current legal protection of these rights is inadequate. Reported incidents are often not investigated thoroughly or promptly, and those who are accused are rarely punished proportionately. Persons with albinism do not get proper redress or reparation, and survivors are often forced to flee their homes to seek protection from the violence. Most persons with albinism in the region have faced some form of prejudice or stigmatisation.

‘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,’

Jake Epelle, IBAHRI Task Force Member

The report provides a thorough overview of applicable international and regional laws, norms and interpretative frameworks. Until now, the report posits, the rights of persons with albinism have been considered purely within disability or criminal law framework, and calls for a more holistic approach that encompasses equality and non-discrimination law, the right to education and the right to health.

The specific recommendations laid out in the report seek to remedy these problems, and improve the protection of the rights of persons with albinism, including:

  • Enacting clear laws criminalising and punishing any acts of violence, including harmful practices against persons with albinism, clarifying ambiguities 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. The report is designed to provide technical assistance to legal practitioners and human rights bodies and mechanisms, and to build their capacity in protecting the human rights of persons with albinism.

Video:

The report launched at an event in London in June 2017, where a panel of members of the Task Force that produced it discussed the problems and recommendations laid out in the report. This video presents highlights of the evening.