Human rights for people with albinism

In global human rights movement, the rights activism for people with albinism is now quite new and emerging against the backdrop of its unfamiliarity to mass people outside the domain of medical science. 'Albinism' is a genetic condition also called achromia, achromasia, or achromatosis in medical jurisprudence.

It is generally characterized by a deficit in the production in melanin and by the partial or complete absence of pigment in the skin, hair and eyes. Being a hereditary disease, it is believed that it can be found in humans (affecting all races) and other species including mammals, birds, fish and reptiles. Such a scientific short account of 'albinism' gives us an apprehension to hold that people with albinism are perhaps at the risk of being discriminated or denied of basic human rights in their day-to-day lives.

This apprehension is evident from a recent report of the United Nations Office of the High Commissioner for Human Rights (UNOHCHR), which shows that people with albinism often face “great challenges to their rights such as being denied of jobs or places at school and also extreme violence and loss of life as there is a lucrative trade in body parts of persons with albinism in some countries for use in witchcraft”.

Inspired by human rights spirited-text, the Human Rights Council (HRC) has recently appointed a Nigerian human rights activist-cum-scholar named Ms. Ikponwosa Ero as the first ever Independent Expert on Albinism. To remember, this position of independent expert on albinism has been created by the HRC as a way to focus attention and provide much needed information and discussion on the issue.

In accordance with the mandate of international human rights law, the expert's duties are wide ranging and include identifying, exchanging and promoting good practices; engaging in dialogue and consulting with States and stakeholders regarding the issue; and gathering information on violation of the rights of those living with albinism.

To note that, Ms. Ero has spent the last seven years working specifically on issues regarding the human rights of people with albinism. Ms. Ero opined that “[a]fter years of work on the issue in the human rights arena, and having lived with albinism, I now consider that I have a unique combination of skills and experiences which could be put to good use at the service of my fellows with albinism”.

However, working with States to identify and implement specific measures to end attacks, and also creating a model of best practices on albinism in consultation with relevant stakeholders – are now considered as the major challenges for her. Further, demystification of the condition of these from a human rights perspective is one of the important things to bring forth by the expert, since mystification of the condition often leads to physical violence in the society. It is hoped that the new post of Ms. Ero as an independent expert will provide visibility and awareness of the condition both locally and globally.

Compiled by Law Desk (Source: OHCHR.ORG)