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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
Witchcraft and the human rights of persons with albinism 2017, para. 17
- Paragraph text
- In the international human rights framework, persons with albinism have normative protection in the International Bill of Rights covering all their fundamental human rights, including the rights to life, physical integrity, liberty, security, the highest attainable standard of physical and mental health and an adequate standard of living. Further protection can be found in specific instruments, including the Convention on the Rights of Persons with Disabilities and the International Convention on the Elimination of All Forms of Racial Discrimination, which proscribes "racial discrimination" based on colour.
- 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
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 47
- Paragraph text
- Attacks against persons with albinism for the purpose of obtaining and using body parts in muti or juju as well as accusations of witchcraft match these criteria for harmful practices. In the publication on harmful practices issued by her Office, the Special Representative of the Secretary-General on Violence against Children, quoting the UNICEF study, reported that "discrimination, violence and harmful practices against children with albinism have reached alarming proportions". She added that there were no cultural or religions justifications for such practices.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Social & Cultural Rights
- Person(s) affected
- Children
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 69
- Paragraph text
- It is likely that similar laws, including those inherited from the colonial era, when examined in the light of the principles of human rights, including the rule of law and the right to a fair trial, would lead to outcomes similar to the ones prescribed by the Commission. They include repealing outdated legislation on witchcraft, while emphasizing the necessity of sanctioning persons who accuse others of witchcraft; making it generally known that harmful practices related to witchcraft would be prosecuted; and ensuring that mere belief in witchcraft is not criminalized. However, as witchcraft in general has yet to feature prominently on the radar of human rights mechanisms, the initiation of a system-wide approach, beginning with a scaled-up version of the exercise conducted in Papua New Guinea, including an exercise in definition, is timely.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Governance & Rule of Law
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 73
- Paragraph text
- WHO, in its study on the legal status of traditional medicine, details the status of traditional medicine in 123 countries around the world, showing the diverse approaches taken by States with respect to the practice. In sub-Saharan Africa, some States recognize traditional medicine as part of the national health system while others are silent on the issue. There are also variations between States in the level of regulation of traditional medicine practitioners. Some countries have established registers of practitioners, or exercise control by issuing government licences at the central level; in others, local officials are able to authorize the practice of traditional medicine in their administrative and/or health subdivisions. In certain countries, unlicensed practising of traditional medicine is a punishable offence. In other countries, including those with records of attacks, there is no licensing or registration process for practitioners of traditional medicine.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Governance & Rule of Law
- Health
- Person(s) affected
- N.A.
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 92
- Paragraph text
- That being said, given the extent of witchcraft practices and the diversity of victims of related harmful practices, including persons with albinism, a transversal approach is timely. This could be in the form of a guiding document that takes into account the several recommendations made to date, including by the Special Rapporteur on extrajudicial, summary or arbitrary executions, the Constitutional Law Reform Commission of Papua New Guinea and the preliminary conclusions of the Independent Expert.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Year
- 2017
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
Witchcraft and the human rights of persons with albinism 2017, para. 23
- Paragraph text
- From the sociological and anthropological perspectives, the following definition for witchcraft has been proposed by Marc Augé: witchcraft is "a set of beliefs, structured and shared by a given population that addresses the origin of misfortune, illness and death, and the set of practices for detection, treatment and punishment that corresponds to these beliefs". Often, the diagnostic aspect of witchcraft often pinpoints an individual person as the source of the misfortune within the family, place of employment or community.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Social & Cultural Rights
- Person(s) affected
- Families
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 24
- Paragraph text
- UNICEF extends this definition by adding that "witchcraft is a theory that explains and justifies a conception of the universe". With both conceptualizations, witchcraft could also be described as a religion or belief. In various countries affected by attacks against persons with albinism, witchcraft beliefs and practices are widespread. Adherents are found across various strata of society, transcending socioeconomic class, the urban-rural divide and levels of education.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 56
- Paragraph text
- Countries with records of attacks against persons with albinism, including both countries visited this year by the Independent Expert, demonstrated the challenge of the ambiguity between the two practices. This problem has already been identified by the Independent Expert as a root cause of attacks. The issue is further complicated by the lack of effective oversight over the practice of traditional healers, the secrecy that often surrounds witchcraft practice and the absence of a clear national policy position on the issue.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Year
- 2017
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