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International Albinism Awareness Day: What you need to know

By Bhoomika S
|
Google Oneindia News

New Delhi, Jun 13: Today is International Albinism Awareness Day (IAAD). Observed on June 13 every year, this day celebrates the human rights of persons living with albinism throughout the world. It is a United Nations-prompted observance that has spread awareness among ignorant people about albinism and the difficulties of persons with albinism due to the condition itself and the harsh social treatment resulting from it.

International Albinism Awareness Day: What you need to know

Albinism

Albinism is a congenital condition with little to no pigmentation in the affected person's skin, hair and eyes. This is caused by the absence of melanin, a substance responsible for pigmentation in the above-mentioned body parts and the development of certain optical nerves. So persons with albinism also have poor development and functioning in their eyes.

Albinism is non-contagious and genetic, despite popular and cultural beliefs that may say otherwise. If both parents, or sometimes even if a single parent, carries the gene for albinism, their child could be born with albinism. Persons with albinism have extremely light and pale or changing skin complexion, very white to brown-coloured hair, and pale blue to brown-coloured eyes. Their eyes could sometimes even be red or change with age, depending on the gene inheritance.

Persons with albinism face numerous problems throughout their lives because of their condition. Due to the absence of melanin, they tend to have poor eyesight or permanent visual impairment. Ocular albinism is a type of albinism that affects the eyes only. Albinism could cause optic nerve hypoplasia (underdevelopment of the optic nerve), photophobia (abnormal intolerance to the visual perception of light), reduced visual acuity and other such difficulties. Moreover, persons with albinism are more prone to skin cancer and hypersensitivity to direct sunlight. According to statistics, most of them die between the ages of 30 and 40 due to skin cancer alone.

Persecution

Persons with albinism face discrimination due to their skin colour the most. They also face discrimination on the grounds of disability. In the Sub-Saharan African countries, there have been cases of physical attacks on people with albinism, where the majority of the population is dark-skinned and has dark hair. According to the UN, in the past decade, hundreds of cases of attacks and killings of persons with albinism were reported in 28 of these Sub-Saharan African countries. They were associated with ignorance, longstanding stigma against albinism, poverty and harmful practices originating from the manifestation of witchcraft-related beliefs. These abhorrent practices against persons with albinism persist even today.

The manifestation of discrimination that persons with albinism face vary across regions. In the west, in places like North America, Europe and Australia, discrimination exists in the form of mudslinging, incessant teasing and bullying, especially of children with albinism in schools. According to some reports, in China and other Asian countries, children with albinism are often abandoned or rejected by their families because of their appearances.

History of International Albinism Awareness Day

Yusuf Mohamed Ismail Bari-Bari, late Ambassador of the Mission of Somalia to the UN, Geneva, first led the effort to establish support for persons with albinism through a resolution in the UN in cooperation with Under the Same Sun. This organization promotes and protects the rights of people with albinism, particularly in Africa. On December 18, 2014, the United Nations General Assembly established June 13 as International Albinism Awareness Day. This was mainly to confirm the global focus on advocacy for albinism. The United Nations Human Rights Council then created a mandate that appointed Ms Ikponwosa Ero from Nigeria as the very first Independent Expert on the enjoyment of human rights by persons with albinism.

The National Organization for Albinism and Hypopigmentation (NOAH), New Hampshire, joined the worldwide albinism community to promote the celebration of and spread awareness about albinism on June 13, 2020. Today, IAAH is celebrated worldwide in countries like Tanzania, Senegal, Argentina, Fiji, France, the UK, and Namibia.

Theme for IAAH, 2022

Since 2014, there has been a new theme every year for celebrating IAAH. "Strength beyond all odds" was the theme for 2021. For 2022, the theme remains "United in making our voice heard." #Inclusion4equality

This theme was chosen to include the voices of persons with albinism, which is essential to provide equality. It celebrates how they increase the visibility of persons with albinism in all domains of life and encourages unity among groups of persons with albinism. It also highlights the work that albinism groups have been doing.

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