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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.
- Legal status
- Non-negotiated soft law
- 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
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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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;
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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
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".
- Legal status
- Non-negotiated soft law
- 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
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.
- Legal status
- Non-negotiated soft law
- 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
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.
- Legal status
- Non-negotiated soft law
- 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. 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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. 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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;
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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.
- Legal status
- Non-negotiated soft law
- 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
Witchcraft and the human rights of persons with albinism 2017, para. 19
- Paragraph text
- The phenomena have many connotations and are subject to many interpretations, such that objective definitions are unsatisfactory; "[the] real meaning derives from relationships, shared experiences and individual feelings". Consequently the "meanings … are so varied because the concept is so versatile".
- Legal status
- Non-negotiated soft law
- 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
- N.A.
- Year
- 2017
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.
- Legal status
- Non-negotiated soft law
- 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
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:] [Public education] Public education Ensure that public education campaigns address witchcraft-related practices affecting persons with albinism, particularly those leading to human rights violations. Such campaigns should also stress the reprehensible nature of these practices;
- Legal status
- Non-negotiated soft law
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Equality & Inclusion
- 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] If necessary, review the legislation governing witchcraft-related practices to ensure that it is unambiguous in upholding human rights and is protective of vulnerable groups such as persons with albinism, while affirming the fundamental right to belief, which includes belief in witchcraft;
- Legal status
- Non-negotiated soft law
- 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
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.
- Legal status
- Non-negotiated soft law
- 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
Witchcraft and the human rights of persons with albinism 2017, para. 64
- Paragraph text
- In 2016, the Independent Expert, in collaboration with regional human rights mechanisms, launched a process towards the development of a regional action plan to address attacks against persons with albinism in sub-Saharan Africa. The action plan seeks to identify concrete measures for implementing recommendations made by various human rights and other bodies and to translate them into a concrete road map for action with time-bound measures.
- Legal status
- Non-negotiated soft law
- 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
- 2017
Paragraph
Vision for the mandate 2016, para. 56
- Paragraph text
- The Independent Expert recognizes that a very important part of the mandate is to support States in the development of their national efforts to advance the implementation of the rights of persons with albinism.
- Legal status
- Non-negotiated soft law
- 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
Vision for the mandate 2016, para. 45a
- 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:] Effective protection of persons with albinism and members of their families;
- Legal status
- Non-negotiated soft law
- 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
- Families
- 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.
- Legal status
- Non-negotiated soft law
- 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. 13
- Paragraph text
- In her report to the General Assembly (A/71/255), in which she provided a preliminary overview of the root causes of attacks and discrimination against persons with albinism, the Independent Expert showed how interrelated factors, including the mythologization of albinism and a related lack of understanding of the scientific bases of the condition, poverty, witchcraft practices and other aggravating factors all contributed to ongoing outbreaks of attacks and discrimination against persons with albinism. In the present report, the Independent Expert refers to "witchcraft" as "phenomena", to reflect the plurality of concepts, terms, practices and beliefs encompassed by the term.
- Legal status
- Non-negotiated soft law
- 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
- 2017
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.
- Legal status
- Non-negotiated soft law
- 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. 62
- Paragraph text
- Similarly, on 24 November 2015, Mozambique adopted an action plan to respond to attacks, with concrete, time-bound measures. The action plan is based on a preliminary socio-anthropological study on albinism conducted by the Institute of Social-Cultural Research. The main areas of the action plan are promoting education on albinism, public education and awareness-raising on the issue among families and communities; guaranteeing protection and social assistance to persons with albinism; ensuring prevention of attacks, legal assistance and procedural celerity; sharing and publication of judicial decisions as a means of deterrence; and conducting further research to improve measures identified in the plan and to support evidence-based policymaking.
- Legal status
- Non-negotiated soft law
- 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
- Families
- Year
- 2017
Paragraph