The input to the United Nations includes information on the economic status of people with albinism, how albinism is regarded among disability law and policies, as well as concerns with access to justice and infanticide.
Image source: Wikipedia Commons, 2014.
In 2019, the United Nations General Assembly adopted Resolution 74/123 on social development challenges faced by persons with albinism.
The Resolution, inter alia, encouraged States and UN agencies to identify patterns of discrimination ans to assess progress towards the imporovement of the status of persons with albinism.
In 2021, the Office of the High Commissioner of the United Nations for Human Rights invited relevant stakeholders to provide information on the social development challenges faced by persons with albinism.
In response, on 30 November 2021, Facts and Norms Institute (FNI) concluded a new report: “Social development challenges faced by persons with albinism: input to the United Nations regarding Brazil”.
A concerted effort by the FNI's Global Human Rights Observatory, the report draws upon a variety of sources such as UN and governmental sources, dissertations and academic papers.
Main topics include the number of people with albinism in the country and their economic status, whether albinism is regarded as a disability, access to justice, and accounts of infanticide among indigenous communities.
Statistics and economic status of people with albinism
There are no official statistics about persons with albinism in Brazil. On 22 October 2021, a press release from the Ministry of Health indicated that, “despite the deficit of information about the number of persons with albinism in Brazil, it is estimated that this population comprises approximately 21 thousand individuals”.
Despite the lack of national statistics, it is correct to assume that the social and economic status of people with albinism is, overall, low or very low for numerous reasons:
The colouring, appearance, visual impairment and sensitive skin of persons with albinism lead to multiple and intersecting marginalization;
Most persons with albinism in Brazil are indigenous or Afro descendant, therefore exposed to similar levels of discrimination and socioeconomic exclusion as their ethnic constituencies;
Persons with albinism face major challenges to access to education due to the lack of reasonable accommodation;
Persons living with albinism reportedly face difficulties accessing employment opportunities;
As a consequence of not accessing adequate employment, most persons with albinism tend to depend on public social security benefits. It was reported, however, that they face difficulties accessing those benefits.
Disability law and policies
In Brazil, there are examples suggesting the connection between albinism and disability. In Bahia, for instance, the State Council for the Rights of the Persons with Disabilities had a seat occupied by the Association of Persons Living with Albinism in Bahia.
There are also examples to the contrary. In the context of a social security benefit for persons with disabilities, persons with albinism are often denied access as a result of both the unclear criteria for determining the requisite impairment levels and the ongoing debate about whether albinism is a disability.
Persons with albinism trying to access governmental policies need to seek an ophthalmologist and request a report of ICD-H54.2, “Low Vision”, to prove that they are visually impaired. I.e., albinism is not considered a disability in itself. Only the persons whose hypopigmentation of the iris and retina causes visual acuity of less than 30% are understood as disabled.
Access to Justice
Many persons with albinism lack knowledge of their human rights and how to access justice in the face of human rights violations.
There have been reports of several cases in which the National Social Security Institute denied persons with albinism the access to a social benefit related to the Continuous Cash Benefit programme.
Present in all Brazilian states and in most large cities, the Office of the Federal Public Defender offers free legal, judicial and out-of-court support to citizens who require assistance and who can prove that they lack sufficient means to acquire such support privately. Additionally, there are Offices of the State Public Defender in different states or provinces. There are concerns, however, regarding the extent to which these Offices is able to answer societal demand for its services.
Infanticide of newborns with albinism
Technical and academic accounts of infanticide among indigenous communities in Brazil referred to the targeting of newborns with albinism.
In 2005, researchers from Embrapa (a public corporation dedicated to research) and Funasa (the National Foundation of Health, a public agency) published a technical note according to which the infanticide of newborns with albinism is not uncommon among indigenous communities.
The researchers also referred specifically to the case of a teenage girl with albinism from the Kuikuro community of the Xingu, which they visited on August 2003. She was spared when she was a newborn because she was her parent’s first child and they thought her skin could perhaps become less fragile with time.
Reports from other indigenous persons and Funai staff (Funai is the National Foundation for the Indigenous, a public agency) indicated that these parents had other three children with albinism and all of them were killed at birth. The teenage girl with albinism presented recurrent wounds on her skin. She faced discrimination by other members of the community and was unlikely to become a married woman after their typical rites of passage; according to accounts from the indigenous, no man would take her as a wife.
Moreover, in 2010, researchers published an academic paper about infanticide in Brazilian indigenous communities. The paper presents an overview on the theme and how it is related to albinism, among other themes. The infanticide of newborns with albinism was linked with survival difficulties of persons with albinism in indigenous settings, and also cultural fear of their skin colour.
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