Strength Beyond All Odds
June 13 is International Albinism Awareness Day. It is an annual UN observance day adopted in 2014. June 13 was chosen because, on that day in 2013, the UN adopted its first resolution on Albinism. The observance is focused on raising public awareness of Albinism and preventing attacks and discrimination against Albinism.
Albinism is a rare, non-contagious, genetically inherited difference present at birth. It is characterised by a lack of pigment (melanin) in the hair, skin, and eyes. Generally, both parents must carry the gene for it to be passed on, even if they do not have Albinism. Albinism affects all and occurs in all places worldwide, regardless of origin, civilisation, or culture. There are two types of Albinism, oculocutaneous and ocular. One is affecting the eyes, skin, and hair, and the latter involving the eyes only. Those with Albinism are generally as healthy, and development is occurring as ordinary. However, lack of pigment (melanin) makes the person vulnerable to the sun and intense light. Unfortunately, there is no cure for Albinism.
Estimates put that the prevalence in North America and Europe is 1 in every 20,000 people have some form of Albinism. In sub-Saharan Africa, the estimate puts it at 1 in 1,400. In Tanzania, the prevalence is as high as 1 in 1,000. About 100,000 to 200,000 people in India have this condition.
People with Albinism face multiple forms of discrimination worldwide. Often the people are addressed as “albino” and used in a derogatory way. The condition is still misunderstood, socially and medically. Albinism’s physical appearance is often the object of erroneous beliefs and myths influenced by superstition, leading to marginalisation and social exclusion. In some African countries, many people with Albinism have become targets of violence, with many losing their lives. The belief that albinos possess superpowers, resulting in their being killed for their blood and bones. In some Asian countries, it is not uncommon to find children with Albinism being abandoned. In addition, women who give birth to children with Albinism are often repudiated by their families, ignoring that both the parents must carry the gene to pass it onto their children.
Living with diversity is the challenge humanity faces. Looking for what it should be based on the belief systems and what one is used to leads to discrimination. The skin colour, physical appearance is genetically inherited, and many of the deficiencies are genetically transmitted. The irony is that the parents who transferred the genes themselves cannot accept the children without prejudice. Humankind always searched for progress and enlightenment. Discrimination faced by people with conditions like Albinism is a reminder that it is a long way to go before anything close to realisation and enlightenment happens.
It is time to “Strength Beyond All Odds”. Bringing awareness is the first step in strengthening. Governments, societies must take stern measures to eliminate all forms of discrimination.