A caregiver attends to an abandoned toddler with albinism in Goma, North Kivu, DRC, (2007). UN Photo/Marie Frechon

2020 Theme - "Made to Shine"

"Made To Shine" is the theme for this year's International Albinism Awareness Day. The theme was chosen to celebrate the achievements and successes of persons with albinism worldwide. It is also a call to stand in solidarity with people with albinism through their challenges. In this unprecedented time, people with albinism continue to suffer all types of human rights violations. Recently, in some countries, they have been branded  “Corona” or “COVID-19” in an attempt to scapegoat them for the pandemic. Killings, attacks, bullying, dehumanizing stigma and discrimination continue against people with albinism. Yet on this day, we are reminded that in spite of these horrific practices, people with albinism continue to defy odds, overcome hurdles and face up to injustices with resilience. Today, we stand together with people with albinism all over the world in their fight to live a life that is free of stigma, discrimination, fear and violence. A world where they are made to shine. 

Join the online celebration on 13 June. In solidarity with persons with albinism worldwide, use the hashtags  #MadeToShine  #standup4humanrights

What is albinism?

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.

While numbers vary, it is estimated that in North America and Europe 1 in every 17,000 to 20,000 people have some form of albinism. The condition is much more prevalent in sub-Saharan Africa, with estimates of 1 in 1,400 people being affected in Tanzania  and prevalence as high as 1 in 1,000 reported for select populations in Zimbabwe and for other specific ethnic groups in Southern Africa.

Health challenges of people living with albinism

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 and human rights

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.

United Nations Independent Expert on the enjoyment of human rights by persons with albinism

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. In June 2015, the Human Rights Council appointed Ms. Ikponwosa Ero as the first Independent Expert on the enjoyment of human rights by persons with albinism.

Violence and discrimination against 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 manner in which discrimination faced by persons with albinism manifests itself, and its severity, vary from region to region. In the western world, including North America, Europe and Australia, discrimination often consists of name-calling, persistent teasing and bullying of children with albinism. Little information is available from other regions such as Asia, South America and the Pacific etc. However, some reports indicate that in China and other Asian countries, children with albinism face abandonment and rejection by their families.

 

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Watch

 

drawing of silhouettes of people in different colors, with white in between

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. Meet the Champions of the albinism cause, who are sharing their stories in an effort to dispel these dangerous myths. If you are a person living with albinism, you can share your own story.

 

portrait of a child living with albinism and his father

While growing up, "some people treated me as less of a human being because they believed I had supernatural powers," Moses Swaray told Africa Renewal in an interview. Like many others living with albinism, Moses had been subject to persecution since he was a child due to superstitions about albinos. Having relocated to the US some years ago, he is now a highly sought-after gospel artist within the African diaspora community. Unlike Moses, many people with albinism living in Africa continue to be at risk. In Tanzania, some 75 albinos were reported killed between 2000 and 2016.

 

International days are occasions to educate the public on issues of concern, to mobilize political will and resources to address global problems, and to celebrate and reinforce achievements of humanity. The existence of international days predates the establishment of the United Nations, but the UN has embraced them as a powerful advocacy tool. We also mark other UN observances.

 

Discrimination, violence and abuse of people with albinism is a major concern for all affected and society as a whole. On International Albinism Awareness Day in 2019, people with albinism came together to promote albinism awareness and commit to continue advocating for their rights.

 

Tanzania has witnessed a spate of brutal attacks and killings on people with albinism. The attacks are linked to myths and witchcraft. In a bid to protect this vulnerable group, the Tanzanian government has resolved to round up children with the condition in 13 centres throughout the country.

 

Connie Chiu was born in Hong Kong. The fourth child in a Chinese family, she is the only one born with albinism. Connie and her family moved to Sweden where she grew up studying arts and journalism. At the age of 24, she started her fashion modelling career by working with the French designer Jean-Paul Gaultier. Now, Connie juggles modelling with her singing career; as a jazz singer she is invited to perform at major events, jazz clubs. See more videos of people living with albinism.