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.
