Monday, 13 June 2016

Protecting the Rights of Persons with Albinism

By Wamundila Waliuya

I feel a strong chill up my spine. A strong shiver down my feet. I feel tears in my eyes. My stomach just suddenly goes rumbling just like the strong African drums. I hear a strong eerie sound in my ears. I am sweating. Why? Persons with albinism are being threatened for extinction! Seriously sad and uncalled for.

I write this article as part of the commemoration of the “International Albinism Awareness Day” which falls on 13th June, 2016. While in the state of feeling all the strange chills, I am delighted that different governments in Africa agreed to recognise this day and actually go ahead to financially promote the day. It is important to realise that the condition of albinism is a simple condition of the absence of a colouring pigmentation of the skin, eyes and hair.

The pigment is called melanin.

The pigment, melanin protects the body of any human being from the effects of rays called ultra-violet rays from penetrating the skin into the body. These rays may cause some cancer. This is why persons with albinism may be seen with rough skins, dark dots on their skins and breaking or bleeding lips. It is a purely biological condition. The colour of the skin is not in any way associated to any spiritual or religious matters. Persons with albinism are born with the condition because their parents carry biological information on albinism. Such biological information is referred to as genetically passed information. Genetically passed information is passed over to offsprings by the parents. Therefore, albinism is passed over to the children by their parents. It is not a spiritual creation. No!

Persons with albinism are purely human. They are born just like any other human being. They grow and live just like any other human being. They die just like any other person. Persons with albinism get ill and die in the way the rest of human nature gets ill and dies. The myth of persons with albinism disappearing to no way instead of dying is a serious traditional misplacement in reality, fact and truth. Persons with albinism live die and get buried just like any other human being. They are just human beings. Nothing extra about them. The colour of their skin is biological not spiritual!

Do we realise that the naming of persons with albinism and “objects” created by God creates the unnecessary stigma, discrimination and threat of the life of these individuals? Nomenclature, especially in our African traditional language raises uncertainty on whether persons with albinism are natural humans. This contributes to the threat to the right to effective participation in socio-economic activities like education, employment, sports, family life, health and politics. I tend to interact with the associations of persons with albinism in the Southern African region. The President of the Association of Persons with Albinism in Democratic Republic of Congo (DRC) disclosed that persons with albinism where being killed or abducted to enhance political influence by politicians. He said, “Politicians are killing persons with albinism in order to use their parts to win elections”. Obviously any part of the body of a person with a disability can never assist a person to win elections. Never!

The President of the association of persons with albinism in Swaziland told me that “discrimination begins from the family and it is spread to the community. So, change must begin from the family.” The persons with albinism movement in Zambia praised government in for recognizing the 13 June Albinism Day and called for the protection of their freedom to movement and life. It is interesting that the President of Malawi has acknowledged the killing, abducting or threat to life of persons with albinism as a national problem. This is encouraging. When Presidents speak people listen. It is now the responsibility of the Presidents of the different countries in Africa to explain what albinism is. The Presidents must with express and immediate urgency order appropriate Ministries to put in place legislative and administrative measures to protect the rights of persons with albinism to life. Public institutions should also put in place strategies for awareness raising on issues around albinism. Furthermore, States should ensure that associations of persons with albinism are economically and technically equipped to carry out vigorous awareness raising campaigns on albinism. Traditional leaders and healers should also be engaged to understand the realities of albinism. Parents of children with albinism face fear and trauma because of the threat on the lives of their children. States should put in place measures to manage the pre-victimasation, victimization and post-victimisation situations they undergo. The mass media should take broad steps to positively create awareness on the reality and facts around albinism. It is also the responsibility of faith based organisations to preach the human nature of persons with albinism. The message should be that ‘albinism is not a spiritual creation, but a biological condition’. This call should attract immediate attention.

The issue of mutilating, abduction and murdering persons with albinism is a threat to their right to life; liberty and security of person; freedom of movement; respect for inherent dignity; health; independent living and being included within the community; employment; social protection; education; family life, sports, culture and recreation; freedom of association and expression; and protection against inhuman and degrading treatment. It also diminishes the right of persons with albinism to the right to mental and physical integrity. The matter violates the right of persons with albinism to protection from abuse, exploitation and violence. This is occurring in circumstances where many African countries have signed and ratified international human rights instruments which promote and protect the rights of all people including persons with albinism. The matter of equal protection before the law is seriously abrogated! The matter of equal recognition as persons before the law is also seriously being violated. Persons with albinism are persons before the law everywhere and in all aspects of life. Nothing is magical about their skin colour. Nothing at all! Reminder. You never know that you are carrying the albinism gene until you sexually meet and conceive with another person with the albinism gene. So, it is the responsibility of every human being to promote the rights of persons with albinism and de-mystify it. The African States must take the lead and carry the leadership. African Union, where are you over this issue? The EU must carry the flag against the mutilation, abduction and murder of persons with albinism. The matter should be treated as a matter which threatens socio-economic development. States usually undermine issues that affect the so-called minority groups. Persons with albinism may be considered as being few in most African counties but they contribute immensely to the socio-economic development of their countries. Many of them are teachers, medical doctors, lawyers, economists, and entrepreneurs. Many more are activists, musicians and academicians. Why should we deliberately ignore this mass of developmental cadres? Protection of the rights of persons with albinism fully lies on the States. Civil society should compliment the leadership of the State. By the way, the State comprises the executive, judiciary and legislature. Each one of these wings carries fully responsibility in ensuring the effective protection of the rights and fundamental freedoms of person with albinism.

It is important at this juncture to highlight myths with needs to be thrown out of the minds of individuals and the perimeters of the communities. Deliberately, I have4 thought of addressing the myths because of the strong belief in the myths I have come across during my advocacy community work. Some of the myths are already addressed in my paper but will be referred to here:

i)                    Persons with albinism are not a strange creation of God. They are a creation of what ever created the rest of nature.

ii)                  The colour of persons with albinism does not signify gold color of ritual colour. It is the absence of melanin. Melanin is a pigment which gives the skin the ‘black’ colour.

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