Ending albino persecution in Africa. Governments, UN and human rights groups step up advocacy to enlighten communities. From Africa Renewal:. December - March Pavithra Rao. A child living with albinism and his father in Dar es Salaam, Tanzania.
President Sirleaf warmly embraced Mr. In Tanzania, some 75 albinos were reported killed between and Also in this issue. Cover Story. By Ernest Harsch. Young African women turn to coding. By Fatima Sene. Reducing inequalities. By Kingsley Ighobor. Africa grapples with huge disparities in education.
By Zipporah Musau. Corporate boardrooms: where are the women? By Kwamboka Oyaro. By Richard Munang. Digital revolution holds bright promises for Africa.
By Eleni Mourdoukoutas. Protectionist ban on imported used clothing. By Franck Kuwonu. New Africa-wide initiative will create jobs. Women in Conflict. Reiterates its full support to the work of the Independent Expert on the human rights of people with albinism;. Calls on the EU and its Member States to continue to support the countries affected in fighting violence on grounds of albinism and improving the social integration of persons with albinism, notably through its development programmes and political dialogue and by sharing best practices and providing the necessary technical assistance;.
As stated by international human rights law, children with albinism have the right to live in a family environment. This is why local NGOs are making efforts to reunite children and families; among these Advantage Africa in the Busoga sub-region of Uganda is supporting more than 1, people with albinism to improve all aspects of their lives, helping children and adults with albinism to feel safe, accepted and included within their schools and communities.
In doing so these organizations operates improving livelihoods, access to hats, high-factor sun screen, dermatology, vision and other health care services; moreover, it has introduced cryosurgery, a product that use liquid nitrogen to remove pre-cancerous lesions from the skin of people with albinism.
Tulime Onlus. Another important activity conducted by NGO is advocate in favor of people with Albinism, informing common people about this disease, thus eliminating prejudices and beliefs and conducting awareness-raising lessons in schools, achieving greater understanding among children, as Tulime Onlus is currently doing in the Iringa region in Tanzania.
United Nations. Moreover, as person with albinism are identified as disabled people [16] they have guaranteed human rights as set out by the United Nations Convention on the Rights of Persons with Disabilities UNCRPD ; these rights include a right to life, adequate standards of living and social protection, equality and non-discrimination, freedom from exploitation, violence and abuse, and a right to education, health, work and employment.
Despite the huge work that is currently carried on in Africa, especially from NGOs, people with albinism are still exposed to different risks and threats from both their relatives and community; in countering this situation is important to consider the important role played by several international organization, which play an important part in sensitizing and informing people, although old beliefs and rites are hardly abandoned by the poorest and less educated people, who think they can solve their problems by turning to sorcerers and wizards.
Source: Webmd. Source: Aoa. Introduction Among the numerous problems that today afflict the African continent, it is possible to note that Albinism is particularly relevant and heavily affects the lives of many people, particularly in Sub-Saharan African countries. What is Albinism? Albinism is a genetic condition caused by a deficit in production of the pigment melanin. It affects populations across the globe regardless of gender or ethnicity although frequencies vary. There are different types of albinism, but the most common and visible is oculocutaneous albinism.
There are few detailed epidemiological studies, but the prevalence of albinism has been approximated at around 1 in — throughout sub-Saharan Africa [ 4 , 5 ]. Data on the prevalence of albinism amongst school children in Zimbabwe and South Africa estimates a prevalence rate in the region of 1 in to [ 6 , 7 ]. Demographic data from in Namibia revealed the highest national prevalence reported in Africa to date at 1 in , compared with 1 in in the census in Tanzania [ 8 ].
Children in African communities born with oculocutaneous albinism lack pigment in their skin, hair and eyes due to inherited recessive mutations in one gene. This has serious implications for their physical health and wellbeing. Lack of skin pigmentation means that they are very sensitive to the damaging effects of the sun. Harsh sunlight causes skin cancers and exacerbates eye conditions [ 9 ]. Albinism results in poor vision, with involuntary nystagmus, photophobia, poor depth perception, strabismus, poor visual acuity and refractive errors [ 7 ].
If not understood or managed incorrectly, albinism can have deleterious health and social impacts on the lives of children with the condition. Aside from the physical consequences of oculocutaneous albinism, there are also significant sociocultural risks. In Africa the lack of pigmentation makes the visible appearance of those with the condition markedly different to their dark skinned families and communities. The impacts of albinism are particularly acute in regions of the world where myths and superstitions surrounding the condition can lead to stigmatisation, discrimination and additional health issues such as cancers due to a lack of adequate sun protection and appropriate treatment of early pre-cancerous lesions.
In the last 10 years there have been cases of violent assault and murder as PWA are targeted for their body parts for use in witchcraft-related rituals to make charms believed erroneously to bring easy wealth and good fortune [ 10 ]. Disability specifically refers to negative interactions between people with impairments and the internal and external environment [ 11 ]:.
There is a growing recognition and acceptance in Africa that PWA should be recognised as disabled [ 12 ], although on an individual level people may not necessarily accept or adopt such a label. In a recent study assessing prison life of disabled people in Ghana, albinism was named specifically as one of six categories of disability [ 13 ]. These rights include a right to life, adequate standards of living and social protection, equality and non-discrimination, freedom from exploitation, violence and abuse, and a right to education, health, work and employment.
For a number of years the United Nations UN has underlined the extreme discrimination faced by people with albinism. Moreover, in March the Council created the mandate of Independent Expert on the enjoyment of human rights by PWA in response to groups advocating for PWA to be seen as a specific group with particular needs requiring attention [ 16 ]. More recently the International Bar Association proposed universal standards for the protection and promotion of rights for people with albinism [ 17 ].
Additionally, the African Charter on the Rights and Welfare of the Child was created to provide additional rights to protection and outlines the rights that African countries must ensure for their child population [ 19 ]. It is the main instrument of the African human rights system for promoting and protecting child rights, complementing the UNCRC in addressing issues of discrimination, empowerment and protection. Despite such legislative protection of rights, it is only recently that a detailed examination of the rights of children with albinism has been undertaken [ 17 ].
The social model of disability makes a distinction between impairment , the lost or limited functioning experienced by an individual, and disability , the barriers that people with impairments face because of the way societies are structured [ 20 ].
Barriers may be social, cultural, material, physical or attitudinal and they exclude people with impairments from mainstream life. As the evidence illustrates these barriers are frequent aspects of the everyday lives of PWA in Africa. In the case of children with albinism, impairment effects include poor vision and potential skin damage due to the effects of the sun.
Thomas argues that people may use such impairment effects to exploit a person, an act of disablism. This model has been used with effect in the study of disabled children [ 21 ]. Although social models of disability are predominately used in Western definitions of disability, Brocco argues that the definition of being a disabled person may constitute a way for PWA to find alternative and more suitable epistemologies for albinism than some of the dominant negative discourses [ 22 ].
In our view, the most important contribution is that it gives PWA the same recognition for financial or other support afforded other disabled people. Although there are laws in Africa and beyond protecting PWA, these need to be implemented effectively [ 23 ]. International responses are criticised for being limited to little more than political rhetoric and only the media and NGOs are thought to have had any traction in raising awareness and conducting advocacy work [ 24 ].
In the 2 years following when the Tanzanian government declared it a capital crime to kill people with albinism, more than people were arrested in that country.
However very few were prosecuted, with courts citing a lack of funds for litigation as the reason [ 25 ]. The situation seems little changed since that study [ 17 ]. In response to the extreme violence against children with albinism, the Tanzanian government implemented a policy of moving children with albinism from their family homes into special schools and camps in order to protect them [ 24 ]. It is argued that while emergency response might have increased security, concerns were raised about overcrowding, inadequate facilities and support, incidents of child abuse and family members abandoning their children in the facilities [ 24 ].
The impact of this form of segregation on family life has received less attention and even less so the impact on the wellbeing of the children. Alongside a right to protection of life, PWA also have the right to health protection, including access to skin and eye health services and provision of skin protection materials such as protective clothing and sunscreens. The high risk of developing skin cancer makes it essential that children with albinism are taught about and are enabled to implement effective sun protection from an early age.
Even where these did provide some protection it was of an inadequately low SPF value for oculocutaneous albinism [ 7 ].
Lund reports on the persistent skin and eye problems of children with albinism in a study in Zimbabwe, highlighting the lack of suitable health care facilities and social care support, with many families relying solely on support from within their families [ 27 ]. It is important to note that negative attitudes towards PWA are not unique to Africa. For example, Wan [ 28 ] reports on the disablism experienced by PWA predominately in North America and their strategies to resistance.
Myths and superstitions, fuelled by a lack of understanding surrounding albinism and the visible difference in the appearance of PWA can lead to stigmatisation, rejection, a lack of acceptance, perceptions of difference and limited social integration [ 1 , 22 , 25 ]. Their visible difference is so stark that they are in effect viewed as white people within a black community. Furthermore Brocco [ 22 ] highlights the negative labels and terminology used to describe and define PWA in Africa.
Thus many children with albinism are raised without the support of both parents, creating financial difficulties and an inability to afford health care or education for their child [ 25 ].
The efforts of many NGOs in Africa aim to offer this support. Other authors have explored the implications of both old and new myths about albinism on personal identity and social acceptance [ 29 ]. Over half of the pupils in a sample of schoolchildren in Zimbabwe did not know why their skin was pale — other common misconceptions being that they thought they had the top black layer of skin missing [ 27 ]. If well informed, teachers can be an important, effective route for dissemination of information about genetics and health care, especially as they are such highly respected members of the community [ 27 ].
Recent anthropological research has critiqued the media for their simplistic approach of blaming traditional superstitions for the killings of PWA, identifying that contract killers are fulfilling a market demand for body parts for use as charms thought to bring wealth and good fortune [ 24 ].
There are strong arguments that it is poverty that drives the violence towards PWA [ 25 ] and this is specifically acknowledged by the United Nations as a key contributor to witchcraft related violence [ 26 ].
It is possible to make a direct link to the boom in mining and rapid social change and inequalities in Tanzanian society [ 24 , 30 , 31 ] and though poverty in and of itself does not cause violence; in terms of PWA it seems to be a significant risk factor.
Media reports of violence against people with albinism have mostly focused on identifying and punishing the perpetrators, although there are articles focused on awareness raising and political activism [ 24 ]. Burke et al. The profound effects of this violence, on PWA as well as on the wider community, are also documented regularly in the media, illustrating how family members are forced to escort their children to school and to other areas of the community.
There are accounts of parents hiding their children at home, seeking asylum in police stations or moving to safer parts of the country. Some families report sending their children away to boarding schools, camps or relations in safer areas [ 24 ]. Such media attention has also raised awareness of the need to address the challenges facing PWA, including stigma and the lack of access to education and health services [ 24 ].
Thomas emphasizes the importance of understanding the psychosocial effects of disablism [ 2 ]. Although there is a paucity of evidence on this aspect, a qualitative study conducted with 15 adults with albinism in South Africa highlighted the negative effects the disablist external environment can have on self-image and on their sense of belonging at home and within the wider community [ 1 ].
Previous studies have also identified that prejudice and stigma are a major challenge faced by most PWA [ 32 , 33 ]. A sample of children with albinism in Zimbabwe reported problems they encountered around children avoiding, antagonising and indeed fearing them [ 28 ]. Further, the development of self-esteem through group and team activities taking place in outside spaces is being denied to this group [ 7 ].
Individual testimonials provide first-hand accounts of these difficulties. The first Member of Parliament with albinism to be appointed in Tanzania, Ms. Kway-Geer, described her life as a schoolchild:. People used to abuse me on the road when I took the buses to school. This is enacted at a personal level the right to a fulfilling life , at a relational level and at a social level the right to education.
The right to live independently may also be expressed as the right to live a fulfilling life and in the African context, this involves earning a living and supporting the family.
Unpublished and anecdotal accounts attest to the challenges faced by PWA as they transition from childhood into adulthood and the potential barriers that this group might face as young adults.
Clearly, the impact of childhood experiences has the potential to affect this transition and there is clear evidence that discrimination continues into adult life. Baker and colleagues stress the prejudices people with albinism face from employers, emphasising the importance of employment for this group, both economically and for social acceptance [ 30 ].
Kiprono et al. The social isolation of children with albinism can be confounded by the barriers they face to being able to play outside with other children and to take part in outdoor activities at school whilst remaining safe from the damaging effects of the sun. As an illustration of prejudice, one study of students in a South African university reported that six out of 10 students who did not have albinism stated that they would not date a person with albinism [ 36 ].
In Kiprono et al. The colour of their skin was also cited as a significant cause of divorce or separation. It should be noted that being unmarried is more unusual and stigmatising in many African countries than it is in the global north. There are mixed policies on the education of children with albinism in Africa, meaning children experience a range of educational experiences.
Sometimes they are educated in specialist schools for visually impaired children, although there is an increasing move to adopt inclusive education [ 12 ].
An inclusive education study identified gender inequalities in the education of children with albinism in Malawi [ 37 ]. Despite albinism affecting boys and girls equally, twice as many boys as girls were attending Resource Centres offering specialist support for their low vision, indicating a gender bias in accessing this service.
Children with albinism have a right to education, thus attention needs to be given to ensuring that their needs are met within mainstream settings. This can sometimes mean only minor adaptions to classroom layouts, such as access to visual aids, but perhaps more fundamentally requires a change in attitudes amongst teaching staff and other pupils.
A study at a special school for children with albinism in rural South Africa identified that although the school had access to magnifiers and low vision devices, these were only used in specific lessons such as map reading [ 7 ]. In Zimbabwe and parts of Zambia children with albinism attend mainstream schools where inclusion can be challenging.
Teachers can fear teaching a child with albinism [ 38 ] and a lack of education and correct information about the condition in the local community inevitably increases the probability of teachers drawing on local myths in their approach to children with albinism [ 30 ]. Access to appropriate educational support, including teachers with the knowledge of how to assist children with albinism has been recognized as important in enhancing the self-esteem of these children, promoting their personal development and growth and creating a sense of belonging [ 1 ].
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