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Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 6
- Paragraph text
- Albinism is a condition that results in a significant or near total lack of pigmentation in any or all of the skin, hair and eyes. The most significant human rights issues have emerged from myths linked to the form of albinism involving a lack of pigmentation in the skin. This is also the most visible form of albinism. All forms of albinism are together understood as rare, non-contagious, genetically inherited and occurring in both sexes, regardless of ethnicity, in all countries of the world. However, in most communities around the world, albinism is not fully understood.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Person(s) affected
- All
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 7
- Paragraph text
- Myths about albinism include the belief that a child with albinism is a curse meted out on the mother or family of the child. It is also sometimes believed that children with albinism are the result of their family's or parent's evildoing and they are therefore considered a punishment to the whole family and community. In most cases, the blame for having a child with albinism is often attributed to the mother because the curse is believed to be matrilineal, transmitted by the mother's side of the family. There are also beliefs that women who give birth to children with albinism are unclean, or even in some cases witches. A similar myth is that the mother of a child with albinism stepped onto something evil, leading to a curse on the whole family.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Person(s) affected
- Children
- Families
- Women
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 11
- Paragraph text
- The lack of understanding of the condition is also illustrated by myths that persons with albinism cannot have children who do not have albinism, or that they are sterile. Furthermore, it is often believed that persons with albinism can only be found within one`s proximate race; consequently, the worldwide status of the condition is often not generally known. This narrow understanding of the frequency of albinism feeds into myths which present the condition as a particular problem supernaturally aimed at specific women and families.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Health
- Person(s) affected
- Children
- Families
- Women
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 12
- Paragraph text
- It is evident that none of these myths are true, yet they demonstrate the lack of understanding of the genetic nature of albinism. This absence of scientific knowledge and the resort to myths to provide explanations concerning albinism lead to discrimination against persons with albinism and their families, mothers in particular. However, this should not lead to the conclusion that public education alone will eradicate these myths. Evidence shows that even where the truth and the scientific basis of albinism are known, they can co-exist with myths. Scientific explanations of the origins of albinism can answer the question "why?". But they fail to answer particular, localized and personal questions such as "why in this particular person?" and "why at this particular time and place?". The inability of science to answer these questions means that many turn to explanations proposed by supernatural beliefs such as witchcraft, and its practitioners, also known as witchdoctors.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Harmful Practices
- Person(s) affected
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 19
- Paragraph text
- The myth that persons with albinism naturally have a short lifespan is also prevalent. It appears to supply an explanation for the relatively high frequency of early deaths among persons with albinism. Such early deaths, which particularly correlate with the myth that persons with albinism disappear, also appear to be strongly linked to the prevalence of skin cancer and the high number of early to midlife fatalities recorded among them on account of this preventable disease. There is an urgent need to address this disease through the provision of both preventive and curative measures that are accessible and affordable or free, particularly in rural areas.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 65
- Paragraph text
- In addition to Miguel's correlation of income and witchcraft, it has also been documented that there can be a plausible link between the surge in occult practices, including witchcraft, and the pressures and opportunities people are faced with in a changing socioeconomic order. A study of specific mining towns where the use of body parts of persons with albinism in lucky charms has been documented indicates that the cumulative influx of a large number of migrant miners, generational and cultural divides within the local villages, and the social change propelled by the rapid focus on mineral extraction for income in the local economy are among the factors which triggered a symbiotic relationship between miners seeking luck and comparative advantage in their work on the one hand and the witchdoctor on the other hand.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Economic Rights
- Person(s) affected
- Persons on the move
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 46
- Paragraph text
- Witchcraft beliefs and practices as they relate to albinism have essentially capitalized on a myth-riddled situation, to the benefit of practitioners and willing believers. Further, the relative rarity of body parts of persons with albinism has been capitalized upon by the witchcraft beliefs which proffer that the body parts can attract equally rare minerals, such as gold or diamonds. The same argument with regard to rarity appears to have informed the market value of body parts, such that "the albino fetish has become the most expensive charm because it is perceived as harnessing spirits that are far more powerful than … a waganga [witchdoctor/traditional healer] could otherwise offer".
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Health
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 73
- Paragraph text
- Lack of public education on albinism is closely linked to widespread myths regarding the condition. This is why the need for sustained awareness-raising initiatives on the issue cannot be overstated. That said, awareness-raising and public education initiatives cannot replace concrete action, but ought to be carried out as part of a broader action plan such as the one being developed at the African regional level. Education of persons with albinism about their condition and their rights is also necessary to counter myths and misbeliefs.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 13
- Paragraph text
- There are different types of albinism. The most common and visible type is oculocutaneous albinism (OCA), which affects the skin, the hair and the eyes. Within this type, there are subtypes, which reflect varying degrees of melanin pigment deficiency in an individual. The main subtypes of OCA are tyrosinase negative albinism (OCA1) and tyrosinase positive albinism (OCA2). In OCA1, there is little or no production of melanin and it is often characterized by white hair and opaque or transparent irises. In the more prevalent, particularly in African countries, OCA2, some melanin is produced and it is characterized by yellow-blonde or sandy-coloured hair and grey to light brown irises. A less common form of albinism is ocular albinism which affects the eyes alone, while albinism accompanied by Hermansky-Pudlak syndrome is another less common form, which is characterized by bleeding disorders, bowel (colitis) and lung diseases.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 44
- Paragraph text
- Discrimination against women takes various forms. Women with albinism are reportedly victims of targeted acts of sexual violence spurred by the myth and misbelief that sexual intercourse with a woman with albinism can cure HIV/AIDS. Furthermore, women who give birth to a child with albinism may face ostracism and discrimination. They are also exposed to rejection by their husbands or partners, accused of adultery or infidelity and blamed for giving birth to a child who is generally seen as a curse or a bad omen. The rejection of mothers of children with albinism exposes them to poverty and isolation and increases the vulnerability to attacks of both mother and child with albinism.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Gender
- Person(s) affected
- Children
- Women
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 45f
- Paragraph text
- [The Independent Expert intends to identify and consolidate the measures to end and prevent attacks to persons with albinism in consultation with States, civil society, international and regional bodies and agencies as well as other stakeholders. The specific measures identified will be based on those already identified, particularly those adopted by the African Commission on Human and Peoples' Rights, namely:] Inclusion of information in reports submitted by States parties to the African Commission on Human and Peoples' Rights under article 62 of the African Charter on Human and Peoples' Rights, on the situation of persons with albinism, including good practices in protecting and promoting the rights of persons with albinism;
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Governance & Rule of Law
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 24
- Paragraph text
- In an environment where having albinism is regarded as a curse and where the myth that albinism can be contracted like a contagious disease is prevalent, crossing the road to avoid walking near or refusing to shake hands with persons with albinism is commonplace.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 33
- Paragraph text
- The Oxford dictionary defines witchcraft as "the practice of magic, especially black magic; the use of spells and the invocation of spirits". However, it appears that witchcraft has many connotations and is subject to many interpretations, such that "objective definitions of witchcraft are unsatisfactory because its real meaning derives from relationships, shared experiences and individual feelings", and consequently "meanings of witchcraft are so varied because the concept is so versatile".
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 51
- Paragraph text
- In this context and owing to their visibility in most of the affected communities, persons with albinism, and parents of children with albinism, constantly live in fear of attack. Many do not sleep peacefully and have deliberately restricted their movements to the necessary minimum, during daylight hours and when escorted by trustworthy persons. Mothers have sent their children to live with relatives or in boarding schools. Yet, even there the fear remains, as such establishments are often in need of increased security measures.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Humanitarian
- Person(s) affected
- Children
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 84
- Paragraph text
- The Independent Expert also recommends that affected States and civil society, in close cooperation, systematically gather data and information on attacks against persons with albinism and conduct relevant studies with emphasis on trends and forms of attack, cases of discrimination and root causes, since data and research on this topic remain relatively scarce.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Violence
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 21
- Paragraph text
- There are rare cases where persons with albinism are deified or viewed as having godlike qualities. For example, the Guna people in Latin America give a special place to persons with albinism as protectors. Tales of persons with albinism being considered as water deities or as natural chiefs have also been reported. While deification and positive supernaturalization of persons with albinism may appear to be desirable, this is not an ideal state because the person with albinism is still the subject of myths unfounded on fact or science. Consequently, their dignity remains grounded in subjective narratives and not in their objective status as human beings.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Social & Cultural Rights
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 25
- Paragraph text
- In addition, such fear of contagion can be extended to objects touched by persons with albinism. In the words of a person with albinism, "some people will not touch what I touch. In the bus no one wants to sit next to me. People don't want to shake hands with me, share utensils, touch me or come near". Similarly, another person with albinism reported that people refuse to share a taxi with him. Further, as a result of such beliefs, people are sometimes reluctant to eat any food that has been touched by persons with albinism. This is particularly stigmatizing in a context where persons eat from a common pot. It also raises difficulties for persons with albinism working at markets, as customers may prefer other sellers.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Person(s) affected
- All
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 26
- Paragraph text
- Family members, friends and service providers are not immune to the practice of self-distancing from persons with albinism. This is illustrated by the following testimony of a person with albinism: "my mother distances herself from me … I had girlfriends who preferred to quietly meet me away from the public. You go to a party; they won't want to dance with you". Similarly, it was reported that, in certain cases, nurses and other medical professionals, including physicians, were reluctant to touch or treat patients with albinism. In such a context, it is not uncommon that persons with albinism self-limit their interactions within the community and shy away from attending school.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Health
- Person(s) affected
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 61
- Paragraph text
- Fear of attacks has also worsened the economic situation of persons with albinism who are not able to cultivate their land, go to the marketplace or initiate economic activity in freedom. The same can be said of parents of children with albinism, who often have to curtail their economic activity to accommodate the need to watch over their children day and night and to escort them to and from school. This strain on family economics increases the likelihood that a child with albinism will be viewed as a burden or curse on the family. This in turn increases the child`s vulnerability to attacks initiated or facilitated by family members.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Social & Cultural Rights
- Violence
- Person(s) affected
- Children
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 79
- Paragraph text
- Aside from by a small, though growing, number of civil society organizations, insufficient attention is being paid to research and documentation of cases of attack and discrimination against persons with albinism. This paucity can be attributed in part to the fact that the human rights issues faced by persons with albinism have come to the attention of States and the international community only recently. While the primary duty of documenting crimes and ensuring justice for victims belongs to the State, the indispensable supplementary work of civil society in this regard remains crucial. However, a majority of non-governmental organizations focusing on the issue are relatively new, continue to face resource shortages and are still developing their capacity to carry out research and robustly engage with relevant national, regional and international mechanisms.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Governance & Rule of Law
- Violence
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 83
- Paragraph text
- [The Independent Expert makes the following recommendations to States affected by attacks against persons with albinism:] [Legal action] Consider regulating the practice of traditional medicine where ambiguity exists, in practice, between witchcraft on the one hand and traditional, herbal or alternative medicine on the other. Such regulation might include an effective monitoring mechanism that reaches rural, remote and border areas, particularly where attacks against persons with albinism have been reported;
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Health
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 49
- Paragraph text
- Civil society reports nearly 500 cases of attacks against persons with albinism across 26 countries. They include various forms of attack, including physical assault, murder and sexual violence tied to witchcraft beliefs and practices. In relation to the relatively small numbers of persons with albinism, usually in the single digits of thousands to tens of thousands per country, this number of cases is highly concerning. Moreover, these are reported cases alone. Civil society activists on the issue believe far more cases go unreported owing to family collusion and the secrecy surrounding witchcraft practices.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Violence
- Person(s) affected
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 54
- Paragraph text
- The Human Development Index, which is a strong indicator of poverty and correlating factors, showed in 2014 that of the 26 countries where attacks have been reported, 20 were listed as countries with a low human development coefficient; the other six affected countries were listed in the medium human development category. That said, it is noteworthy that, overall, the affected countries had a level of income inequality that ranged from relative equality to relative inequality, with a GINI coefficient range of 30.8 to 63.9, the average for all 26 countries being 44.3.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Poverty
- Person(s) affected
- All
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 32
- Paragraph text
- In the Pacific Islands, it has been reported that people with albinism suffer comparable human rights-related issues with regard to lack of access to information and support for health conditions, vision problems and cultural isolation. There is little verified information on the human rights situation of persons with albinism in Asia, South America and the Caribbean. The Human Rights Council Advisory Committee stressed that the absence of information on albinism in other regions should not be interpreted to mean that there is no problem of discrimination, stigmatization and violence in those regions. Lack of sufficient knowledge remains a significant barrier to tackling discrimination, stigmatization and violence.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 33
- Paragraph text
- Discrimination, stigma and bullying of persons with albinism owing to their appearance have been reported in all regions of the world, to varying degrees. Such discrimination has been described as discrimination based on skin tone or shade, including within the same ethnic group. While discrimination based on skin colour is an everyday reality for most persons with albinism, discourse on discrimination based on colour has rarely been applied to albinism. This is for various reasons such as the lack of visibility of albinism, until very recently, the lack of understanding of what persons with albinism experience and lastly, but perhaps most significantly, strong historical ties of racial discrimination discourse to race or ethnicity. Yet, there is potential to address albinism under the International Convention on the Elimination of All Forms of Racial Discrimination, as the governing concept is not "race" but "racial discrimination", which may be based on any of five "grounds": race, colour, descent, national origin and ethnic origin.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Social & Cultural Rights
- Person(s) affected
- All
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 15
- Paragraph text
- As an initial step, the mandate holder will outline, in broad strokes, some of the obstacles with which persons with albinism are confronted. The obstacles identified constitute the main areas of concern and priorities of the mandate holder and include human rights violations such as attacks, desecration of graves, trafficking of body parts, displacement, discrimination against persons with albinism, as well as human rights violations based on disabilities, challenges in the right to the highest attainable standard of health and the right to education. The Independent Expert would also like to draw attention to the particularly concerning situation of women and children with albinism.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Persons on the move
- Persons with disabilities
- Women
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 83
- Paragraph text
- [The Independent Expert makes the following recommendations to States affected by attacks against persons with albinism:] [Health intervention] Improve access to health care for persons with albinism, with particular focus on affordable or free sun protection products and skin cancer treatment. Such a health programme ought to be accessible to persons in rural or remote areas at little or no cost to them. The training of community health nurses and the use of mobile clinics have been identified as best practices in this regard;
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 85
- Paragraph text
- The Independent Expert also recommends that the international community continue to support States and civil society working on this issue, including through capacity-building, particularly in the area of investigative research and forensic science. Another key area needing support is the implementation of protective measures, including those already identified by a multiplicity of stakeholders, including persons with albinism from various countries of the African region, at the recently concluded Consultative Forum: Action on Albinism in Africa.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Governance & Rule of Law
- Person(s) affected
- N.A.
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 12
- Paragraph text
- Albinism is a rare, non-contagious, genetically inherited condition that affects people worldwide regardless of ethnicity or gender. It results from a significant deficit in the production of melanin and is characterized by the partial or complete absence of pigment in the skin, hair and eyes. In order for a person to be affected by albinism, both parents must carry the gene and, in that case, there is a 25 per cent chance that a child will be born with albinism at each pregnancy. The proportion of persons affected by albinism in the world differs from region to region. For example, in North America and Europe, it is estimated that 1 in 17,000 to 20,000 people are affected by the condition, while in sub-Saharan Africa, 1 in 5,000 to 15,000 could be affected, with specific countries having a much higher tendency, including estimated rates of 1 in 1,400, and about 1 in 20 persons in the general population carrying the gene for albinism. Other studies suggest that in specific groups in Panama or in the Pacific region, the rate of people affected could be as high as 1 in 70 to 1 in 125.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Families
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 34
- Paragraph text
- The term "persons with disabilities" under the Convention on the Rights of Persons with Disabilities has a broad scope and includes any person with a long-term physical, mental, intellectual or sensory impairment, which, in interaction with various barriers, may hinder his or her full and effective participation in society on an equal basis with others.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Persons with disabilities
- Year
- 2016
Paragraph