What is Albinism?
Albinism is a non-contagious, genetically inherited condition that affects people regardless of race, ethnicity, or gender. It results from a significant deficit in the production of melanin and is characterized by the partial or complete absence of pigment in any or all of the skin, hair, and eyes. Persons with albinism therefore often appear pale in comparison with members of their family and their communities. Both parents must carry the gene for a child to have albinism. In such cases, there is a 25% chance that a child will be born with albinism. Albinism is a condition with multiple subtypes. In addition to significantly affecting appearance, albinism often results in two congenital permanent health conditions: visual impairments to varying degrees and high susceptibility to ultraviolet-induced skin damage, in particular skin cancer.
Albinism in Africa
In over half of the countries in Africa, it has been widely documented that myths and misbeliefs surrounding persons with albinism have led to witchcraft-related harmful practices involving the use of their body parts obtained through brutal attacks and mutilations. Hundreds of attacks, including murder, mutilations, grave robberies, sexual violence, kidnapping, and trafficking of persons and body parts, have been reported across 27 countries in the region.
Albinism Worldwide
Statistics about the prevalence of albinism vary widely, and no comprehensive studies have yet been conducted. It is reported that in North America and Europe, an estimate of 1 in every 6,600 to 20,000 (depending on the country) has albinism. In Africa, it is estimated that 1 in every 5,000 to 15,000 people has albinism, with selected populations having estimates as high as 1 in 1,000.
The impact of the condition on human rights and its perception by others, including its effect on social inclusion, vary by region. Information about albinism worldwide may be obtained from the report on Albinism Worldwide by the UN Independent Expert on albinism.
According to the Global Albinism Alliance, as of the year 2020, there were 247 known albinism groups worldwide. From our records, close to ninety percent of these albinism groups are based in or working in Africa.
Albinism and Human Rights
Persons with albinism are often discriminated against on the intersecting grounds of color and disability. According to reports of the UN Independent Expert on the enjoyment of human rights by persons with albinism, discrimination based on color exacerbates the consequences of disability, particularly when there is a high degree of contrast between the coloring of persons with albinism and that of the dominant population. In addition, multiple forms of discrimination affect subgroups and individuals among people with albinism. For instance, persons with albinism who are women and those affected by HIV/AIDS face aggravated discrimination. Therefore, an understanding of the challenges and identification of good practices to ensure the rights of persons with albinism requires a holistic approach.
Resources on Albinism
- The United Nations has a specific mandate on albinism and provides comprehensive reports on various themes in human rights and development. For more information, visit the website of the UN Expert here
- International Albinism Awareness Day: In 2014, the United Nations declared June 13 as International Albinism Awareness Day. Numerous awareness-raising events are organized on this occasion. For more information on this day, visit the UN website above, the site run by civil society Albinism Day, and the corresponding Facebook page.
- Disabilities Strategies and Action Plans by Country/Area: This UN webpage provides links to more than 100 disability strategies and action plans. It aims at facilitating knowledge sharing, identifying good practices in disability-inclusive development, and promoting the rights of persons with disabilities. View these strategies here
- Witchcraft-related Harmful Practices: In Africa, persons with albinism are particularly vulnerable to attacks linked to beliefs in witchcraft. The 2018 Report of the UN Independent Expert on the Workshop on Witchcraft and Human Rights summarizes issues pertaining to witchcraft-related harmful practices. In 2021, the UN adopts a historic resolution condemning harmful practices related to accusations of witchcraft and ritual attacks.
- The Global Albinism Alliance (GAA) is also a good source of information on albinism around the world. For more information about the GAA, visit their website and Facebook page, or contact them via email at info@albinismalliance.org