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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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
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 type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 57
- Paragraph text
- Second, even with a rights-based definition of persons with disabilities, it remains extremely difficult to determine whether a person is part of the targeted group or not. For instance, some countries may lack the administrative capacity required for disability determination in urban, rural and remote areas. The heterogeneity of the disability community makes targeting particularly challenging, especially in the case of invisible or episodic impairments. In some cases, corruption or medical discretion can also affect the disability assessments. Therefore, disability-targeting errors are very frequent.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 37
- Paragraph text
- Persons with disabilities who have not acquired entitlements to a contributory pension during their working lives face considerable difficulties in maintaining an adequate level of income security towards the end of their lives, when adequate non-contributory pensions are not available. Moreover, as they are often less likely to have a partner or to marry, intra-family support as an additional source of income security is often insufficient and unreliable. Therefore, social protection programmes are necessary to guarantee income security for older persons with disabilities and to provide support services. As disability rates are considerably higher among older persons, there is a growing demand for health and social care and support services to enable them to continue living independently and with dignity.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Person(s) affected
- Older persons
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 73
- Paragraph text
- Lack of physical accessibility affects not only access to social protection programmes, but also to the provision of services and the delivery of benefits. An analysis of contributions received shows that in many countries, public and private infrastructure (e.g., schools, health-care centres and housing) is often inaccessible to persons with disabilities. Similarly, while cash benefits are commonly paid by direct transfer into bank accounts, the accessibility of bank services is not always ensured. The same applies to the distribution of benefits in kind, particularly in rural and remote areas.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 75
- Paragraph text
- Information, materials and communication pertaining to social protection programmes must not create barriers to the participation of persons with disabilities. Persons with sensory and intellectual impairments are often particularly affected. In fact, when information, materials and procedures are neither accessible nor easy to understand, persons with disabilities have no means of knowing about the existence of programmes and their requirements. This is important also because of the greater likelihood of persons with disabilities being illiterate because of lack of access to education.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Education
- Equality & Inclusion
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 76
- Paragraph text
- In this regard, the Committee on the Rights of Persons with Disabilities has stressed that States should ensure that social protection measures and services are provided in an accessible manner, in accessible buildings, and that all information and communication pertaining to them is accessible. The Committee has also highlighted the importance of adopting measures to remove barriers to access to basic services, drinking water and sanitation in rural and remote areas, and to include organizations of persons with disabilities in the monitoring of their implementation.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Social & Cultural Rights
- Water & Sanitation
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 77
- Paragraph text
- States have an obligation to ensure that persons with disabilities are actively engaged in the development of social protection systems. The principle of participation is expressly recognized in article 3 (c) of the Convention on the Rights of Persons with Disabilities. Article 29 (b) of the Convention further requires States to promote an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, on an equal basis with others, and to encourage their participation in public affairs. Article 4, paragraph 3, requires States to consult and involve persons with disabilities, including children with disabilities, in the development and implementation of legislation and policies to implement the Convention, and in other decision-making processes concerning issues relating to persons with disabilities.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Governance & Rule of Law
- Person(s) affected
- Children
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 79
- Paragraph text
- In most cases, however, States do not systematically consult with persons with disabilities. A majority of the contributions received for the present report illustrate either a lack of consultation or sporadic, merely symbolic processes, with unrealistic time frames. Additionally, when consultations are undertaken, they are often limited to disability-specific programmes (rather than being on overall policies or strategies on social protection) or are conducted only at the central level. Organizations of persons with disabilities need to be informed of ongoing efforts, and processes need to be clear, accessible and disability-friendly, given that organizations of persons with disabilities are often underresourced and unfamiliar with the field of public decision-making and their right to participate therein.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Governance & Rule of Law
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 80
- Paragraph text
- States should also ensure that the diversity of persons with disabilities is represented and consulted in decision-making processes related to the right to social protection. However, persons with autism, intellectual impairment and psychosocial disabilities, as well as children and older persons with disabilities are often excluded from such consultations, because they are less likely to have their own representative organizations. Finally, indigenous persons with disabilities and persons with disabilities living below the poverty line or in rural or remote areas, face additional, multi-faceted barriers to participation.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Person(s) affected
- Children
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 64
- Paragraph text
- Disability-related needs should be considered and addressed in all areas of the social protection system. In many countries, the lack of availability of services is problematic: health coverage, for instance, does not always include specialized health services or assistive devices that persons with disabilities may need. Thus, they must bear, with their households, the cost of accessing those services or devices. Similarly, public employment and housing programmes often do not guarantee appropriate conditions for persons with disabilities to actually benefit from those programmes.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 65
- Paragraph text
- States should ensure that benefits are sufficiently high to enable persons with disabilities to afford the goods and services required to enjoy at least a minimum essential level of economic, social and cultural rights. The Committee on the Rights of Persons with Disabilities has stressed the importance of taking into account disability-related costs to ensure a sufficient allocation of benefits, in particular for children with disabilities and their families. The Committee has also recommended calculating benefits on the basis of the personal characteristics and circumstances and the needs of persons with disabilities.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Person(s) affected
- Children
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 66
- Paragraph text
- Like other programmes, conditional cash transfer programmes must take into account disability-related needs. However, there is growing evidence that the conditionalities attached to these programmes tend to exclude persons with disabilities owing to structural barriers. This includes, for instance, the lack of inclusive education that precludes children with disabilities from attending school or the lack of accessible information that impedes deaf persons from participating in training or meetings with the social services. In response, some conditional cash transfer programmes have opted to exempt persons with disabilities from the conditionalities that they cannot fulfil because of existing external barriers. While such exemptions allow persons with disabilities to fight short-term poverty, they contradict the overall goal of investing in human capabilities to promote social inclusion and active participation, and represent a missed opportunity to address longer-term poverty.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Poverty
- Person(s) affected
- Children
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 83
- Paragraph text
- To guarantee progressive realization of the right to social protection, States should formulate strategies and plans that include realistic, achievable and measurable indicators and time-bound targets, designed to assess progress in its implementation. In addition, States should adopt adequate laws and policies, and disburse funds to implement these plans and strategies. States must refrain from entrusting private charities with funding responsibility for persons with disabilities, owing to the unsustainability of this approach and the possible negative impact on the rights of persons with disabilities.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Governance & Rule of Law
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 84
- Paragraph text
- In practice, since the financial crisis of 2008, many countries have been reducing their social protection systems, disproportionately affecting persons with disabilities. In some countries, austerity measures include cuts in or caps on disability benefits, stricter eligibility criteria, the elimination or reduction of subsidies and tax credits, and reduced expenditure on community support services, such as in-home services and personal assistance. These cuts are not only affecting the standard of living of those who relied on such benefits, but also limit their capacity to live independently, often leading to their institutionalization.
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Governance & Rule of Law
- Humanitarian
- Person(s) affected
- Persons with disabilities
- Year
- 2015
- Paragraph type
- Other
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 type
- Other
Paragraph
The right of persons with disabilities to social protection 2015, para. 55
- Paragraph text
- While the ultimate goal is to achieve a universal and systematic approach to social protection, in many middle- and low-income countries non-contributory
- Body
- Special Rapporteur on the rights of persons with disabilities
- Document type
- Special Procedures' report
- Topic(s)
- Equality & Inclusion
- Year
- 2015
- Paragraph type
- Other
Paragraph