The Sunday News
Hazel Marimbiza, Sunday News Correspondent
JUNE 13 marked the 7th International Albinism Awareness Day, an International event aimed to end violence and discrimination against people with albinism.
This year’s theme, “Strength Beyond All Odds”, highlighted the achievements of people with albinism around the world, showed that people with albinism can defy all odds, celebrated how people with albinism worldwide meet and exceed expectations in all domains of life and encouraged everyone during this time of a global Covid-19 pandemic to join the global effort to build a better world.
Research indicates that 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 is said to be a result of 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 one 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.
Albino’s face a lot of challenges which are centered on multiple forms of discrimination daily. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination.
The manner in which discrimination faced by persons with albinism manifests itself, and its severity, vary from region to region. Research indicates that in the western world, including North America, Europe and Australia, discrimination often consists of name-calling, persistent teasing and bullying of children with albinism. Little information is available from other regions such as Asia, South America and the Pacific etc. However, some reports indicate that in some Asian countries, children with albinism face abandonment and rejection by their families.
While it has been reported that persons with albinism globally face discrimination and stigma, information on cases of physical attacks against persons with albinism is mainly available from countries in Africa. Over the past decade, hundreds of cases of attacks and killings on albinos were documented in at least 28 countries south of the Sahara.
In countries like Zimbabwe, Tanzania or Mozambique, where the biggest albino people community can be found, they still face daily discrimination. Fueled by beliefs in witchcraft and superstitions, exclusions and harmful practices continue to this day. A greater degree of contrast in pigmentation often gives rise to a greater degree of discrimination.
In order to better understand discrimination perpetrated against albinos particularly in Zimbabwe, Sunday News interviewed some individuals with the condition who reside in Bulawayo. Ms Sithembiso Moyo (30), said albinos suffer discrimination in various forms.
“Discrimination is worsened by a lack of dignified names for people with albinism. Some people still use names such as inkawu (monkey), to officially refer to someone with the condition. These names need to be dropped as quickly, “said Ms Moyo.
She expressed concern that people with albinism suffer constant ridicule and social exclusion in their own families and in society in general.
“Women are particularly affected by stigma, with many being abandoned by partners and spouses because of ridicule and discrimination or because they gave birth to a child with albinism.”
She also said bullying and insecurity are common for children attending school to the extent that some have resorted to going to special schools because they are often safer than mainstream ones.
“The situation has a damaging cumulative effect on the psychosocial health and self-esteem of many people with albinism, and has resulted in depression, suicidal tendencies and an overall fear of going out in public. This fear is further compounded by security issues. We have to change this and highlight the gifts, talents and potential of people with albinism to be amazing contributors to Zimbabwe and the world,” said Ms Moyo.
The United Nations (UN) High Commissioner for Human Rights, Ms Michelle Bachelet concurred with Moyo in her statement marking the celebration of the day.
“As the pandemic exacerbates the challenges faced by people with albinism escalated. In some countries, they have been smeared with names such as ‘corona’, and some have even been banished from their communities.”
She called on more measures of protection for people living with albinism.
“I call on the international community to continue to build and strengthen partnerships with persons with albinism and organizations representing them, to ensure they are included in decision-making that concerns them and to promote their enjoyment of all human rights”, said Ms Bachelet.
Ms Ikponwosa Ero, a Nigerian activist who is herself an albino, and is the Human Rights Council’s first independent expert on the enjoyment of human rights by persons with albinism in her recent report called for more action to protect excessive abuse and discrimination on people living with albinism.
Ms Ero said countries should act to end racial discrimination and institute policies to end harmful practices, particularly those centered on accusations of witchcraft and ritual attacks against women with albinism.
She also said special programmes should be put into place to help these women with albinism and their children out of poverty through training so they can earn an independent living.
Previously there have been several efforts to end discrimination against people with albinism. One notable example is that in 2013, the United Nations Human Rights Council adopted a resolution calling for the prevention of attacks and discrimination against persons with albinism. Moreover, in response to the call from civil society organizations advocating to consider persons with albinism as a specific group with particular needs that require special attention, the Council created the mandate of the Independent Expert on the enjoyment of human rights by persons with albinism.
All these efforts to end discrimination against albinism are appraisable but it’s clear that more needs to be one to ensure the affected persons enjoy their rights. In a report human rights activists gave recommendations to Governments on ending discrimination.
“Governments should increase public sensitization efforts aimed at dispelling deadly and discriminatory myths about albinism, notably through workshops and public service announcements on radio and television, particularly in rural and isolated communities.
“They should also ensure that all teachers in the public education system are trained to adequately provide for the specific needs of children with albinism and ensure that resources are at the disposal of schools to meet the specifications needed of children with albinism, notably by providing for textbooks and exams with larger fonts and assistive devices to read the blackboard,” reads the report.
Governments were also encouraged to pursue efforts to promote the safety of people with albinism by investigating threats and crimes against people with albinism and holding those responsible to account.
