This year’s theme, "Inclusion is Strength," builds on last year's theme of "United in making our voice heard." Its aim is to ensure the inclusion of the voices of persons with albinism in all sectors of life. It emphasises the importance of inclusion of a diversity of groups from both within and outside the albinism community.
Specifically, this year's theme highlights the importance and benefits of:
- Including a broad spectrum of persons with albinism in albinism-related discussions, including youth, women, children, older persons, LGBTQ+ and persons with albinism of all races and ethnic backgrounds;
- Collaborating and embracing albinism within the disability movement, and in other sectors where decisions affect persons with albinism; and
- Seeking synergies with human rights groups and other groups from outside the albinism movement.
Everyone is welcome to use this theme especially on and around the Day itself: 13 June. You are also welcome to choose your own theme.
#InclusionIsStrength #InclusiveFuture #AlbinismDay
UN Human Rights - Our Champions: Roben X
Robdarius Brown, stage name Roben X, stands up against bullying, reaching out to the youth through music.
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.
Did you know?
- Albinism is a genetic condition inherited from both parents that occurs worldwide, regardless of ethnicity or gender.
- The common lack of melanin pigment in the hair, skin and eyes of people with albinism causes vulnerability to sun exposure, which can lead to skin cancer and severe visual impairment.
- As many as 1 in 5,000 people in Sub-Saharan Africa and 1 in 20,000 people in Europe and North America have albinism.
- In some countries people with albinism suffer discrimination, poverty, stigma, violence and even killings.
- In some countries, women who give birth to children with albinism are repudiated by their husbands, and their children abandoned or the victims of infanticide.
- The movie industry has seldom portrayed people with albinism accurately, preferring to depict them as villains, demons or freaks of nature.
- Violence against people with albinism is largely met by social silence and indifference, and is seldom followed by investigations or the prosecution of perpetrators.
source: OHCHR
“I received disturbing reports of attacks and abductions of persons with albinism, in two different countries, both of which had little or no known attacks against persons with albinism until the recent months,” said the Independent Expert on albinism, Muluka-Anne Miti-Drummond.
“One of the victims was a child whose body was reportedly thrown into a river after her eyes and organs had been removed, no doubt for ritual purposes.”
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.
International days and weeks 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.
Salif Keita, from Mali, is one of the most influential musicians on the African continent. Known as the “Golden Voice of Africa”, Mr. Keita was born with albinism. In 2005, he founded the Salif Keita Global Foundation to raise awareness of the condition. His award-winning album La Différence was dedicated to ending violations of the rights of persons with albinism across the world. http://albinism.ohchr.org/
Although there is a lot of research on the situation of human rights defenders (HRDs), there is little information about human rights defenders working on albinism. HRDs with albinism often face challenges including lack of resources and capacity, limited links with other human rights organisations, and threats to their right to life. In our latest animated video in collaboration with the Centre for Human Rights, we highlight these challenges, and how States can act to protect HRDs with albinism/working on albinism.
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.
