Today is International Albinism Awareness Day. It is set aside to encourage and celebrate unity among groups of persons with albinism as well as amplify the voices and visibility of persons with albinism in all areas of life.
Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world.
Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. As a result, almost all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for the absence of melanin that is central to albinism.
According to the US National Institute of Health (NIH), around one in 20,000 persons is born with albinism, which would equate to some 400,000 people out of a global population of 7.9 billion.
Africa has a slightly higher incidence, estimated at somewhere between one in 5,000 and one in 15,000 inhabitants.
One of the largest populations of people with albinism is believed to be in Tanzania, with as many as one in 1,400 people born with the disorder.
The lack of melanin means persons with albinism are highly vulnerable to developing skin cancer. In some countries, a majority of persons with albinism die from skin cancer between 30 and 40 years of age. Skin cancer is highly preventable when persons with albinism enjoy their right to health.
This includes access to regular health checks, sunscreen, sunglasses and sun-protective clothing. In a significant number of countries, these life-saving means are unavailable or inaccessible to them. Consequently, in the realm of development measures, persons with albinism have been and are among those “left furthest behind.” Therefore, they ought to be targeted for human rights interventions in the manner envisioned by the Sustainable Development Goals.
Due to a lack of melanin in the skin and eyes, persons with albinism often have permanent visual impairment. They also face discrimination due to their skin colour; as such, they are often subject to multiple and intersecting discrimination on the grounds of both disability and colour.
People with albinism face multiple forms of discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination.
In some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk. These beliefs and myths are centuries old and are present in cultural attitudes and practices around the world.
The United Nations Human Rights Council adopted a resolution in 2013 (A/HRC/RES/23/13) calling for the prevention of attacks and discrimination against persons with albinism. Moreover, in response to the call from civil society organizations advocating to consider persons with albinism as a specific group with particular needs that require special attention, the Council created the mandate of the Independent Expert on the enjoyment of human rights by persons with albinism.
While it has been reported that persons with albinism globally face discrimination and stigma, information on cases of physical attacks against persons with albinism is mainly available from countries in Africa.
Persons with albinism face more severe forms of discrimination and violence in those regions, where the majority of the general population are relatively dark-skinned. In other words, a greater degree of contrast in pigmentation often gives rise to a greater degree of discrimination. That appears to be the case in some sub-Saharan African countries where albinism is shrouded in myth and dangerous and erroneous beliefs. The figures on violations against persons with albinism are telling.
There have been hundreds of cases of attacks and killings of persons with albinism reported in 28 countries in Sub-Saharan Africa in the past decade. The attacks have several root causes including ignorance, longstanding stigma, poverty and most abhorrently, harmful practices emanating from manifestation of beliefs in witchcraft. The alarming reality is that these horrendous practices continue today.
The Theme International Albinism Awareness Day for 2022 is ‘United in making our voice heard’, and this was specifically chosen because including voices of persons with albinism is essential to ensure equality #Inclusion4equality
