Accepting Albinism

You have been lightly pigmented your entire life. It even affects your eyesight. There is a rumor that people like you are revered for your body parts. You are an albino.

Albinism is a rare, non-contagious, genetically inherited condition resulting in little or no pigmentation (melanin) in the skin, hair and eyes, causing vulnerability to the sun and bright light. It is found in both sexes regardless of ethnicity and all countries worldwide.

Albinism is prevalent in sub-Saharan Africa with estimates of one in 1,400 people being affected in Tanzania, according to the United Nations.

Prevalence as high as one in 1,000 has been reported for select populations in Zimbabwe and other specific ethnic groups in Southern Africa.

Almost all people with albinism are visually impaired and prone to developing skin cancer.

According to the Cleveland Clinic, some symptoms of albinism are:

·       Very pale skin, hair, and eyes.

·       Patches of missing skin pigment.

·       Crossed eyes (strabismus).

·       Rapid eye movements (nystagmus).

·       Vision problems.

·       Light sensitivity (photophobia).

There are several types of albinism. Levels of pigmentation vary depending on what type of albinism you have. The different types of albinism include:

·       Oculocutaneous albinism (OCA) is the most common type of albinism. People with OCA have extremely pale hair, skin and eyes. There are seven different subtypes of OCA caused by mutations in one of seven genes (OCA1 to OCA7).

·       Ocular albinism (OA) is much less common than OCA. Ocular albinism affects only your eyes. People with OA usually have blue eyes. Sometimes the irises (the colored part of your eyes) are very pale, so your eyes may appear red or pink. This is because the blood vessels inside your eyes show through the irises. Your skin and hair color appear normal.

·       Hermansky-Pudlak syndrome (HPS) is a type of albinism that includes a form of OCA along with blood disorders, bruising issues and lung, kidney or bowel diseases.

·       Chediak-Higashi syndrome is a type of albinism that includes a form of OCA along with immune and neurological issues.

Those with albinism also face discrimination due to their skin color, meaning they are often subject to multiple and intersecting discrimination on the grounds of both disability and skin color.

Over the past decade, UN human rights entities have received reports of more than 600 attacks against children and adults with albinism. Witchcraft was identified as one of the root causes of these attacks, as some believe that the body parts of people with albinism can bestow good luck or wealth.

The International Albinism Awareness Day is being celebrated around the theme of Inclusion is Strength, which validates the importance of diversity-both within and outside the albinism community.

Specifically, it highlights the value and benefits of including a broad range of persons with albinism in albinism-related discussions, such as young people, women, children, older persons and LGBTQ+ persons of all races and ethnic backgrounds.

It also calls for collaborating and embracing albinism within the disability movement and in other sectors where decisions affect persons with the condition, as well as teaming up with other groups outside the albinism movement, such as those working to advance human rights.

Persons with albinism cannot be excluded or left behind when it comes to decisions affecting them, bothering that human rights laws, policies and dialogue, must include issues relating to albinism.

More critically, these must render actions and tangible results. It also emphasizes the need to seek cooperation of various groups, including human rights groups that are not directly involved with the albinism movement.

Albinism was a serious problem in Tanzania during the mid-2000s. The country is believed to have the highest percentage of albinos living. Hundreds of them have been brutally murdered and mutilated in the African country in the past decades for the aforementioned body parts. Another widespread rumor is that albinos are evil spirits. The Tanzania Albinism Society (TAS) and other NGOs fought for the human rights of albinos. They celebrated the first Albino Day on May 4, 2006 and 2009 onwards it came to be known as National Albino Day.

In 2013, the United Nations Human Rights Council (UNHRC) adopted a resolution called “Attacks and discrimination against persons with albinism.” The UN resolution asked urgently for the prevention of attacks and discrimination against persons with albinism since it is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the focus of erroneous beliefs and myths influenced by superstition, which encourage their marginalization and social exclusion and guides to various forms of stigma and discrimination.

Eventually, on December 18, 2014, the United Nations General Assembly (UNGA) acquired a resolution proclaiming June 13 as International Albinism Awareness Day, with effect from 2015. In response to the call from civil society organizations, the UNGA also produced the mandate of Independent Expert on the enjoyment of human rights by persons with albinism on March 26, 2015.

Albinos faced kidnappings and attacks in Madagascar in 2022. International Albinism Awareness Day observances are necessary every year to raise awareness about the human rights of the Albinos across the world and also to condemn such attacks.