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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. 10
- Paragraph text
- Other myths seek an explanation in existing traditional beliefs associated with childbirth. It has been reported, for example, that the birth of children with albinism could be linked to the "snake inside the woman" turning away from that pregnancy. The snake is considered the protector of the pregnancy, monitoring it. Other explanations are that a child born with albinism was conceived when a woman had intercourse while she was menstruating. Further, some mythological beliefs seek to explain the condition by advancing that the mother of the child with albinism was struck by lightning or that albinism occurs when a mother does not consume enough salt in her diet.
- 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
- Children
- Infants
- 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. 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. 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. 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. 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
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. 41
- Paragraph text
- Beliefs that potions containing body parts of persons with albinism can help with relationship problems or restore peace in the family also exist. Further, it is believed that when used in a fragrance, hairs of persons with albinism can be useful for women who want to seduce white men, or for keeping employment. The use for good luck of perfumes or soaps made with body parts of persons with albinism was also 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
- Women
- 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. 50
- Paragraph text
- Victims of attacks and their families are left deeply traumatized and are in dire need of assistance in rebuilding their lives and restoring their dignity, including psychosocial assistance.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Person(s) affected
- Families
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 59
- Paragraph text
- Nevertheless, it is important to state categorically that none of the testimonies received by the Independent Expert supports the proposition that anyone, whether perpetrator, witchdoctor, traditional medicine practitioner, herbalist or buyer, has become wealthier after taking part in such attacks or after using charms and potions involving 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)
- 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. 69
- Paragraph text
- Lack of information about the need for special sun protection for persons with albinism, who lack natural protective pigment, is highly detrimental. The absence of access to sunscreen lotions or sun-protective clothing, as well as lack of adequate, affordable and accessible medical care, leaves persons with albinism highly vulnerable to skin cancer. It is not uncommon for persons with albinism to die of skin cancer before the age of 40 and for children younger than age 5 to present with pre-cancerous lesions. These health issues, in tandem with discrimination, poverty and lack of education, are amongst the factors responsible for the very high number of skin cancer fatalities among persons with albinism in sun-intense countries.
- 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
- Year
- 2016
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 70
- Paragraph text
- The general lack of awareness of the link between albinism and skin cancer has led to the belief that pre-cancerous and cancerous lesions on a person with albinism are a necessary part of albinism. The appearance of such lesions adds more stigma to an already stigmatized appearance and exposes a person with albinism to further discrimination.
- 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. 71
- Paragraph text
- In a context where factual and scientific information on albinism is generally lacking or remains inaccurate, the disfiguration caused by skin cancer of persons with albinism may serve to strengthen myths and witchcraft beliefs, particularly those that supernaturalize and dehumanize persons with albinism. Given that such disfiguration is particularly commonplace where attacks have been reported, the prioritization of health interventions is bound to prevent illness, early death and attacks.
- 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. 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
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. 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
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. 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
Vision for the mandate 2016, para. 20
- Paragraph text
- The appearance that ensues in albinism, in particular the lack of melanin in the skin, eyes and hair, exposes tens of thousands of persons to stigma and discrimination across the world. It is reported that, in Africa, attacks directed at persons with albinism are usually carried out with machetes, resulting in severe mutilation or death. In most cases, the persons attacked are dismembered; body parts such as fingers, arms, legs, eyes, genitals, skin, bones, the head and hair have been severed from the body and taken. In several of those cases, body parts have been hacked off while the person was alive. Reportedly, there is a corollary witchcraft belief that it is preferable to harvest body parts from live victims because screams increase the potency of the potion for which the parts are used. Possible human sacrifices of persons with albinism have also been reported, including through immolation.
- 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
- All
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 24
- Paragraph text
- It has been reported that there is a market for body parts of persons with albinism. The body parts are reportedly sold both locally and across borders. The prices of body parts reportedly range from $2,000 for a limb to $75,000 for a "complete set" or a corpse. Civil society reports indicate that, motivated by those prices, family members and communities have sold, or attempted to sell, persons with albinism, thereby fuelling the supply side of this macabre trade. The prices also indicate the involvement of wealthy individuals as they stand in sharp contrast to the average annual income per capita reported in the affected regions. Given the underground nature of this trade, further study is needed to assess its scope and extent and, on that basis, to identify effective measures.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Person(s) affected
- Families
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 25
- Paragraph text
- Recent cases of body-parts trafficking that were brought to the attention of the Independent Expert by civil society include cases where law enforcement agencies acted promptly and were able to prevent the sale and save the persons with albinism involved. In a few other cases, however, the body parts were harvested and have still not been recovered.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Health
- Violence
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 27
- Paragraph text
- In addition, as a protection measure, children have been transported to shelters, including police stations, schools or centres built for other needs, such as for people living with leprosy. Most of these shelters were neither designed nor prepared for an influx of persons with albinism, nor are they equipped to address the special needs of persons with albinism. Reports show that inhabitants with albinism are exposed to early skin cancer risk and various forms of abuse. Furthermore, as pointed out by the Human Rights Council Advisory Committee in its study on the situation of human rights of persons living with albinism, an assessment by the OHCHR field presence of the situation of displaced persons with albinism in Burundi showed the precarious security situation of some of them and the negative impact of the measure on the right to an adequate standard of living.
- 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
- Year
- 2016
Paragraph
Vision for the mandate 2016, para. 31
- Paragraph text
- Bullying of school-age children owing to their appearance has also been reported in other regions of the world, such as in sub-Saharan Africa. However, in that region, discrimination takes more extreme forms, including infanticide, physical threats and attacks. Lack of information on the condition facilitates the spread of myths to explain albinism, most of which are erroneous and in some cases dangerous, including myths that people with albinism are ghosts or the result of conception during menstruation or the result of a general curse. Life in that context could be described as a cycle of discrimination. Civil society has reported that ostracism of entire families owing to the strong negative connotation of the birth of a child with albinism, perceived as a source of misfortune in certain regions, contributes to infanticide and abandonment of children. Where there are no systematic birth and death records, identification and reporting of such cases are even more difficult. In some regions, children with albinism drop out of school for reasons linked to stigma and because no reasonable accommodation is made for the vision impairment often resulting from albinism. A lack of education combined with widespread absence of health information often lead persons with albinism to employment outdoors with no protection from the sun, which exposes them to a high risk of skin cancer.
- 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
- 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. 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. 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