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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. 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. 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. 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
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
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. 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
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. 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
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. 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
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
Witchcraft and the human rights of persons with albinism 2017, para. 80
- Paragraph text
- The Special Rapporteur on trafficking in persons, especially women and children, in her 2013 report to the General Assembly (A/68/256), stated that the difference between trafficking in organs and trafficking in persons for the removal of organs was largely semantic, given that organs were not moved or traded independently of their source, because the victim was moved or positioned in such a way as to make transplantation possible. However, the hypothesis regarding attacks against persons with albinism suggests a different context. Here the purpose is not the transplantation of a functional organ, but the collection of a body part for muti or juju. Although some cases of trafficking of persons with albinism have been reported, in the majority of the cases, the victims are attacked in their homes or while carrying out their ordinary activities, and their body parts hacked off their living or dead bodies at the place of the attack, or close by. In such cases, it cannot be considered that the victims are trafficked, yet their body parts are being harvested, transported and sold.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Movement
- Violence
- Person(s) affected
- Children
- Women
- Year
- 2017
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
Vision for the mandate 2016, para. 35
- Paragraph text
- Lack of melanin in the eyes results in high sensitivity to bright light and significant vision impairment, with the level of severity varying from one person to another. This vision impairment often cannot be completely corrected. In some countries, this has led to the categorization of persons with albinism as legally blind, which enables them to access the national legal frameworks in the field of the rights of persons with disabilities, including measures related to access to health and education.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Equality & Inclusion
- Health
- Person(s) affected
- Persons with disabilities
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 40
- Paragraph text
- Yet, there are several effective ways to prevent skin cancer, including the use of sun protection cream, which is topically applied, or wearing sun-protective clothing with long sleeves, wide-brimmed hats and sunglasses. Given the accessibility and effectiveness of protective clothing, skin cancer could be significantly prevented at little cost with the right level of public education and early intervention programmes targeting persons with albinism and their families.
- 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
- Families
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 65
- Paragraph text
- Similarly, understanding the root causes of attacks against persons with albinism is necessary in order to design strategies to address discrimination and attacks and to identify adequate prevention measures. The secrecy surrounding witchcraft practices and the underground nature of the market associated with the trafficking in body parts of persons with albinism make it difficult to find evidence. Understanding the phenomena and their implications would therefore be one of the priorities 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
- Health
- Violence
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 17
- Paragraph text
- There is also the myth that intercourse with female persons with albinism can cure infertility, sexually transmitted infections and, in particular, HIV/AIDS. This has led to the rape and forced prostitution of women and girls with albinism, some of whom end up contracting various infections. Cases have been reported of young girls with albinism being prostituted by their family to customers who thereby expect to be cured of HIV/AIDS. It is believed that cases of this sort are underreported owing to various factors, including a pre-existing context of myth-led discrimination against persons with albinism, the stigma of reporting rape and the likelihood of further abuse. Such lack of reporting is bound to aggravate the already oppressed and disenfranchised situation of women and girls with albinism.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Health
- Violence
- Person(s) affected
- Girls
- Women
- Youth
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 39
- Paragraph text
- The vast majority of attacks against persons with albinism have been carried out in order to harvest body parts. There are beliefs that drinking the blood of persons with albinism gives extra magical power or that it has magical properties and brings prosperity and good luck. Fingers of persons with albinism are reportedly worn as necklaces and amulets. Bones of persons with albinism are used to successfully mine for gold and other desirable minerals. Hands of persons with albinism are burned to ashes and mixed in a paste to cure strokes; blood of persons with albinism is used to boost vitality and intellectual capacity, as well as for political power and business. Hair has been touted as useful for agriculture. Genitals, breasts and placentas are used to cure infertility and create good luck.
- 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. 74
- Paragraph text
- Further, there is a need to formally educate persons with albinism because such a person becomes a role model and demystifies misbeliefs about the condition. However, there remains the challenge of discrimination at schools, which is linked to ongoing myths and ignorance on the part of both students and teachers alike. Moreover, the lack of support and reasonable accommodation, including the provision of low vision devices, for persons with albinism remains a substantive barrier to education. These issues have led many children with albinism to stop their education. School dropout has a particularly severe impact on children with albinism because it destroys their chances of finding work indoors, which in turn exposes them to poverty and skin cancer, conditions paving the way to early death due to ritual attacks and skin cancer respectively.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Year
- 2016
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 16
- Paragraph text
- There are different types of albinism. The most common and visible type is oculocutaneous albinism, which affects the skin, hair and eyes. Within this type are subtypes that may reflect varying degrees of melanin deficiency in an individual. Lack of melanin in the eyes results in high sensitivity to bright light and significant vision impairment, with the level of severity varying from one person to another. This vision impairment often cannot be completely corrected. In addition, one of the most serious health implications of albinism is vulnerability to skin cancer, which remains a life-threatening condition for most persons with albinism. All human rights issues relating to albinism reported to date - attacks, mutilation and trafficking of body parts, among others - have been linked to its oculocutaneous form, which is also the most visible type of albinism.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 55
- Paragraph text
- The present report does not question the necessity, complementarity or usefulness of traditional medicine. However, the broad definition of the concept has led to situations where the difference between witchcraft practitioners and traditional doctors is difficult to establish in practice. For example, the Independent Expert has seen advertisements in newspapers posted by "traditional healers" offering to make clients richer, cure incurable diseases, secure release from prison, and making other claims that are more suggestive of witchcraft than traditional medicine. In this context, the ideological affinity found between patients and traditional medicine could facilitate witchcraft as a harmful practice because witchcraft can have a diagnostic objective that could implicate innocent third parties - for example, persons known to and disliked by the patient - as the source of a patient's problem.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Harmful Practices
- Health
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 82
- Paragraph text
- In the absence of specific legislation covering trafficking of body parts, some States have been confronted with a legal gap when they arrest persons for trafficking body parts of persons with albinism such as bones, hair and limbs. In response to this situation, in Malawi for example, the judiciary has made creative use of the Anatomy Act, which was not drafted with the horrendous crimes perpetrated against persons with albinism in mind. The Act, which was drafted for a medical context, carries relatively light penalties but was, until recent reforms, the only instrument available to prosecute cases of possession of body parts of persons with albinism.
- 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
- Violence
- Year
- 2017
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 72
- Paragraph text
- Second are the inherent limits of self-regulation, weak law enforcement and the absence of a far-reaching oversight mechanism for both urban and rural areas. Further, self-regulation by organizations of traditional healers have done little to prevent purported practitioners of traditional medicine from establishing themselves on their own, with no oversight at all. Weak enforcement of government licensing systems has also led to similar situations.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Governance & Rule of Law
- Harmful Practices
- Health
- Year
- 2017
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 35
- Paragraph text
- Some countries with a record of attacks against persons with albinism have identified as a major problem the ambiguity between witchcraft on the one hand and the practice of traditional, herbal or alternative medicine on the other. This is further complicated by the secrecy surrounding witchcraft and the resulting difficulty in identifying its real practitioners in all cases. These matters raise the question of whether and how these occupations ought to be defined and regulated as a means of preventing human rights violations allegedly and actually committed by their practitioners. There is also the issue of whether witchcraft beliefs should be given any form of legal character or recognition when it is largely a supernatural phenomenon. Often, these issues are further complicated by the fact that many legal instruments addressing witchcraft are outdated and disconnected from current social realities.
- 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
- All
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 36
- Paragraph text
- Legal frameworks for the enjoyment of human rights by persons with disabilities, including the Convention, could address issues faced by persons with albinism on the basis of their vision impairment. The Convention in particular identifies areas where adaptations have to be made so that persons with disabilities can fully enjoy their human rights, including access to education, employment, information and health care. Furthermore, the Convention has established as principles respect for inherent dignity, equality of opportunity, full and effective participation and inclusion in society and non-discrimination. On that basis, urgent measures could be implemented to address pressing issues relating to the visual impairment of persons with albinism. However, those measures would need to be combined with other measures designed to address other forms of discrimination faced by persons with albinism as well as to address attacks and to ensure access to health care.
- 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
Vision for the mandate 2016, para. 37
- Paragraph text
- One of the most serious health implications of albinism is the vulnerability to skin cancer. Skin cancer remains a life-threatening condition for most persons with albinism. Statistics on the issue are mostly from Africa and they indicate a worrying trend. Some reports indicate that most persons with albinism die from skin cancer between the ages of 30 and 40 years. A recent sampling of 77 persons with albinism from different African countries seems to support the reported trends. Of the 77, 43 had 239 pre-cancerous lesions and 3 required immediate surgical attention. This sample indicates the scale of the problem in the region and the need for immediate attention.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 52
- Paragraph text
- The Independent Expert looks forward to working closely with all special procedure mandate holders so as to harmonize efforts in addressing the many obstacles to the full enjoyment of human rights by persons with albinism. She sees close connections between her mandate and those of other special procedures, such as the rights of persons with disabilities; the right to education; the right of everyone to the enjoyment of the highest attainable standard of physical and mental health; the issue of discrimination against women in law and in practice; violence against women; contemporary forms of racism, racial discrimination, xenophobia and related intolerance; and cultural rights. The Independent Expert also intends to work in close cooperation with the mandate holders on extrajudicial, summary or arbitrary executions; torture and other cruel, inhuman or degrading treatment or punishment; the sale of children, child prostitution and child pornography; and trafficking in persons, especially women and children.
- 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 with disabilities
- Women
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 57
- Paragraph text
- Guided by her mandate to identify, exchange and promote good practices relating to the realization of the rights of persons with albinism and their participation as equal members of society, she will strive to identify effective measures to address discrimination against persons with albinism at all levels, including with regard to access to health and education. This collection of best practices would address the protection and promotion of human rights of people with albinism and focus on issues beyond attacks, namely discrimination and equality.
- 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
- All
- Year
- 2016
Paragraph