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Albinism & Global Stigma PART I February 2014
ALBINISM EFFECTS PEOPLE FROM ALL RACES © UNDER THE SAME SUN
WHAT IS ALBINISM? A rare genetically inherited difference occurring in both genders regardless of race, in all countries of the world. Results in a lack of pigmentation in the hair, skin and eyes, causing vulnerability to sun exposure and bright light. Almost all people with albinism are visually impaired, with the majority being classified as “legally blind”. North America / Europe: 1 in 17,000 people. Africa: in several communities estimates as high as 1 in 1,000 people being affected. The term “person with albinism” (PWA) is preferred to the term “albino”. © UNDER THE SAME SUN
HOW DOES A PERSON BECOME A PWA? Both parents of a PWA, whether they have albinism or not, must carry the genetic trait of albinism before a child with albinism can be born. (25%) chance at each pregnancy that the baby will be born with albinism. Normal pigmented children born to such parents might also carry the genetic trait for albinism. © UNDER THE SAME SUN
TYPES OF ALBINISM: Albinism only effecting the eyes. This is called Ocular albinism (OA), and is much less common. Most cases are recorded in males. May have skin and hair color that are normal. Albinism affecting the skin, hair and eyes. This is known as OCA or Oculocutaneous albinism. This is the most visible form of albinism. 4 forms of OCA are now recognized – OCA1, OCA2, OCA3 and OCA4; some of these are further divided into subtypes. In each the degree of colour apparent in the individual varies slightly. Hermansky-Pudlak Syndrome (HPS): In addition to having albinism, people with HPS have bleeding problems, bruising lung and bowel disease. © UNDER THE SAME SUN
OCA1OCA2 © UNDER THE SAME SUN
3 MAJOR ISSUES FACE PWA: © UNDER THE SAME SUN
1. LOW VISION © UNDER THE SAME SUN
2. RISK OF SKIN CANCER In Africa, most PWA die by age 40 © UNDER THE SAME SUN
3. MAJOR SOCIAL EXCLUSION/REJECTION Mystification Global Stigma Discrimination Human Rights Violations © UNDER THE SAME SUN
BUT WHY DO PWA FACE SOCIAL EXCLUSION/ REJECTION? “From the 19th century freak show to the East African black market in body parts to the modern cinema, the image of “the albino” has seized the popular imagination. Popular culture attributes many qualities to "the albino;" an outsider; a magical being; a human embodiment of evil. In some cultures, albinism is associated with mystical or prophetic power or even ghosts. The albino body has long been an object of ridicule and fascination; of fear and fetishism.” (SOURCE: Garth Mullins, Canadian Sociologist on CBC Radio Show “The Imaginary Albino”) “What is it about the Albino man that so peculiarly repels and often shocks the eye, as that sometimes he is loathe by his own kith and kin… this mere aspect of all pervading whiteness makes him more strangely hideous than the ugliest abortion. Why should this be so?” (SOURCE: Herman Melville, Moby Dick) © UNDER THE SAME SUN
THE SPECTRUM OF STIGMA/DISCRIMINATION ON ONE END… No positive/accurate portrayal of PWA in the arts, literature and media. It’s seen as normal to portray PWA as villains, demons, ghosts, freaks of nature, mystical anomalies, village idiots, etc. © UNDER THE SAME SUN Silas the Albino Monk – The DaVinci Code Katy Perry Music Video – “Extra Terrestrial”
Names used for PWA © UNDER THE SAME SUN THE SPECTRUM OF STIGMA/DISCRIMINATION ON ONE END… (SAMPLING ONLY. PRESENT CATALOGUE = 182 NAMES FROM 35 COUNTRIES)
Dehumanization lays the foundation for witchcraft attacks: Murder Mutilation Rape Grave robberies Trafficking in PWA organs. © UNDER THE SAME SUN THE SPECTRUM OF STIGMA/DISCRIMINATION ON THE OTHER END… WITCHCRAFT (MUTI/JUJU)
© UNDER THE SAME SUN WARNING: THE FOLLOWING SLIDES CONTAIN IMAGES OF AN EXTREMELY GRAPHIC NATURE
7 year old Lugolola Bunzari, killed January 31, 2013 in Tanzania © UNDER THE SAME SUN year old Chantal Ngendakumana, killed May 6, 2012 in Burundi
12 year old Adam Robert, attacked October 14, 2011 in Tanzania © UNDER THE SAME SUN
7 month old Mariamu Kija Mbogo, killed July 11, 2008 in Tanzania © UNDER THE SAME SUN year old Mariamu Emmanuel, killed January 21, 2008 in Tanzania
305 separate crimes against PWA’s in 23 African Countries. 26 of these attacks occurred in Hundreds more not yet uncovered, likely in many other nations. “…muti activities are often shrouded by a “code of silence” which makes reporting, and the necessary prosecution and investigation all the more difficult.” Fellows, Simon, Trafficking Body Parts in Mozambique and South Africa (2008), Human Rights League, Mozambique. Body-Parts-in-Mozambique-and-South-Africa-Mozambique-Human-Rights-League Accessed August 3, © UNDER THE SAME SUN Record of Attacks
Benin: 2 Botswana: 3 Burkina Faso: 9 Burundi: 21 Cameroon: 7 DRC: 27 Egypt: 1 Ghana: 1 Guinea: 9 Ivory Coast: 21 Kenya: 12 Malawi: 3 Mali: 8 Mozambique: 2 Namibia: 2 Nigeria: 7 Rwanda: 1 Senegal: 7 South Africa: 4 Swaziland: 9 Tanzania: 139 Zambia: 1 Zimbabwe: 2 © UNDER THE SAME SUN
The link between African elections and muti-killings S WAZI ALBINOS PLEAD FOR PROTECTION AHEAD OF VOTE Posted Friday, May at 06:27 Swaziland’s albinos have called on the government for protection ahead of elections expected later this year, fearing their body parts will be harvested by candidates seeking good luck. “Those in authority must make sure that our safety is guaranteed,” Skhumbuzo Mndvoti, an albino community leader living in the southern town of Nhlangano told AFP. “I can warn both adults and parents of albino children to take extra care during these election days,” Mndvoti said. Ritual killings are common of in Swaziland, and elsewhere in Africa, with “muti” practitioners -- a catch-all for traditional medicine and witchcraft -- using limbs or body parts as amulets. Full story available at: © UNDER THE SAME SUN
Refugee PWA Attacks or threats of deadly attacks propel them to seek refuge. 15 PWA fleeing 9 countries received asylum. UTSS has given expert testimony in various courts and tribunals in these matters. This trend is expanding. Displaced PWA Hundreds of PWA in centers in East Africa. © UNDER THE SAME SUN
General Sources of Protection for PWA Basic human rights treaties that broadly cover the human rights of PWA: United Nations Charter Universal Declaration on Human Rights International Covenant on Civil and Political Rights (ICCPR) International Covenant on Economic Social and Cultural Rights (ICESCR) Convention on the Rights of the Child (CRC) Convention against Torture (CAT) Are there specific mechanisms of protection for PWA? Yes, but first, where do we fit in? © UNDER THE SAME SUN
Classifying Albinism: Transforming Perceptions & Ushering Protection PART II © UNDER THE SAME SUN
Key Considerations for Classification: 1.PWA are attacked and shunned because of their appearance. 2.Stigmatized not only because they have pale skin and low vision issues; but also because of mystification of the totality of their albinistic appearance. 3.Stigma and discrimination is a global phenomenon grounded in mystification and misconceptions of albinism. In North America/Europe/Australia PWA suffer from: Aggressive name calling Persistent/violent bullying Persistent demonizing in pop culture In Sub-Saharan Africa: PWA suffer from: Aggressive name calling Persistent/violent bullying Persistent dehumanizing from myths Witchcraft attacks Harmful traditional practices (ie. cultural infanticide) © UNDER THE SAME SUN
Key Considerations for Classification: 4.Witchcraft is a reality for thousands of PWA © UNDER THE SAME SUN It is: combination of natural and supernatural beliefs, philosophies and practices aimed at manipulating nature for the benefit of the practitioner. May involve use of human body parts from live victims because of belief that the screams of victims increases potency of potion. Historians say witchcraft formed part of the social fabric of many pre-colonial African societies PEW Forum: beliefs in witchcraft remain influential today in a significant number of African countries.
The Main/Default Classification of PWA A specific people group with particular needs that must be given special attention in IHRL (“specific people group”) © UNDER THE SAME SUN
Similar attention has been drawn to certain analogous groups such as: the elderly, person living with HIV/AIDs, and more recently, the dalits or “untouchables” of South Asia. © UNDER THE SAME SUN
Particular Social Group Visible Minority Group Group with Disabilities Three Proposed Sub Classifications © UNDER THE SAME SUN
1. “Particular Social Group” From 1951 Refugee Convention One of the five grounds enumerated in Article 1A(2) on which refugee status may be determined PWA fit all elements of the definition of PSG (see definition below) © UNDER THE SAME SUN Women, tribes or homosexuals from several countries are a PSG for the purposes of granting them asylum. UTSS proposes the same for PWA In some national jurisdictions PWA have been granted asylum based on their membership in a particular social group “a particular social group is a group of persons who share a common characteristic other than their risk of being persecuted, or who are perceived as a group by society. The characteristic will often be one which is innate, unchangeable, or which is otherwise fundamental to human identity, conscience or the exercise of one’s human rights.” (UNHCR Guidelines, para.11)
2. “Visible Minority” Group PWA experience colourism Albinism as new category of “colour” Access to CERD and Durban Declaration UN Independent Expert on minority issues stated that the problems faced by PWA such as stigma, lifelong social exclusion and discrimination, are similar to the experiences faced by vulnerable racial minorities because of their skin colour. (See Joint Press Release by UN Rapporteurs, 4 May 2013) © UNDER THE SAME SUN
3. Persons with Disabilities (PWD) PWA have both a visual and skin impairment PWA classified as “legally blind” in some countries. Some African countries also refer to PWA as PWD due to skin’s absence of melanin. Under the HR approach to disability, PWA are classifiable as PWD PWA divided on disability issue Why: added stigma and rejection within PWD Particular PWA needs camouflaged in PWD movement. © UNDER THE SAME SUN Disability currently centres on human rights (CRPD) PWD = impairment + various barriers to effective social participation
UTSS POSITION © UNDER THE SAME SUN CLASSIFICATION SUB CLASSIFICATIONS
FOR MORE INFORMATION: UNDER THE SAME SUN #200 – th Avenue Surrey, BC, CANADA, V3R 0N © UNDER THE SAME SUN
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