Beyond race, ethnicity and gender, people with albinism are not ghosts

By Namugerwa Martha

Albinism is still profoundly misunderstood, socially and medically and people with albinism face multiple forms of discrimination worldwide.

Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes (oculocutaneous albinism), causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. Both parents must carry the gene for it to be passed on to their children, even if they do not themselves have manifestations of the condition.

The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa. In Europe and North America, 1 in 20,000 people have the condition according to the NGO under the Same Sun. However, data on the prevalence of albinism by country remains scarce.

The physical appearance of persons with albinism is often the object of numerous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion, leading them to various forms of stigma and discrimination.

The worst expression of discrimination against persons with albinism is their dehumanization, which lays the foundation for horrifying physical attacks against them, because some believe that they are magical beings or ghosts, they mutilate or even kill them so their body parts can be used for witchcraft rituals.

Much as these attacks claim many lives, and surviving victims and their families experience severe trauma, persons with albinism are not well protected.

Albinos deserve to have their rights to life and security, as well as the right not to be subjected to torture and ill-treatment. Education and awareness-raising campaigns can help combat superstition and stigma associated with albinism.

However, the State’s obligation to criminalize, investigate and prosecute perpetrators of such crimes is particularly critical due to the vulnerability of persons with albinism, whereas, the commitment to do so by States would ensure access to effective remedies and rehabilitation, including medical and psychological care, for the survivors and their families.

Hundreds of ritual attacks against persons with albinism, particularly children, have been reported in various countries like Tanzania, Uganda and many others, many more cases remain undocumented or unreported because of the fear of victims and their families, as well as the secret nature of witchcraft although violence is largely met by social silence and indifference.

Additionally, the impunity for killings and attacks against persons with albinism is a concern, while some investigation and prosecution seem to take place, sentencing  their perpetrators appears to be rare and very many victims face significant difficulties in bringing their cases to justice, fearing retaliatory attacks or further stigmatization.

Without effective and affordable access to justice, persons with albinism cannot claim their rights and contest the human rights violations to which they are subjected to like women who give birth to children with albinism are often rejected by their husbands and families, not adding the stigma and abuses the children with albinism face be it at school, family and the society as well, some are frequently abandoned by their parents because of the appearance of their skin and also the belief that they might be a source of misfortune.

The deeply entrenched prejudices they face worldwide also impede persons with albinism from accessing adequate health care, social services, legal protection and redress for rights abuses.

People with albinism have a right to freedom from discrimination which requires States to adopt comprehensive strategies to ensure that persons with albinism are afforded equal protection under the law and in practice.