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19СОЦИОЛОГИЧЕСКИЕ НАУКИ
НАУКА БЕЗ ГРАНИЦ • № 3 • 2016
СОЦИОЛОГИЧЕСКИЕ НАУКИ
УДК 394
ЛЮДИ С АЛЬБИНИЗМОМ СТАЛКИВАЮТСЯ С МНОГОКРАТНЫМИ ФОРМАМИ ДИСКРИМИНАЦИИ ВО ВСЕМ МИРЕ
Кадирова Дилафруз Зафаровна, филолог, преподаватель английского языка, Академический лицей при Ташкентском Фармацевтическом Институте,
Ташкент, Республика Узбекистан.
Аннотация: альбинизм - генетическое заболевание, обусловленное частичным или полным отсутствием пигмента в коже, глазах и волосах.
Ключевые слова: болезни, генетические заболевания, наследственные заболевания, альбинизм, альбиносы, депигментация.
PEOPLE WITH ALBINISM FACE MULTIPLE FORMS OF DISCRIMINATION WORLDWIDE Kadirova Dilafruz Zafarovna, philologist, the teacher of English, The academic lyceum at the Tashkent Pharmaceutical Institute, Tashkent, Republic of Uzbekistan.
Summary: albinism - genetic disorder caused by a partial or complete absence of pigment in the skin, eyes and hair.
Keywords: diseases, of genetic diseases, hereditary disease, albinism, albino, depigmentation.
Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination: Women who give birth to children with albinism are often repudiated by their husbands and their families, because they are not aware that both parents must carry the gene to pass it onto their children. Further, children with albinism are frequently abandoned by their parents or,
more sporadically, the victims of infanticide, because of the appearance of their skin, the disabilities they may have as a result of their condition, and the belief that they may be a source of misfortune.
The deeply entrenched prejudices they face worldwide also impede persons with albinism from accessing adequate health care, social services, legal protection and redress for rights abuses.
The forms of discrimination faced by persons with albinism are interrelated. Their right to education, for instance, is affected by their vision impairment that can force them to
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drop out of school. A poor level of education, in turn, can lead to unemployment and affect their right to an adequate standard of living, consigning many to poverty. The right to freedom from discrimination requires States to adopt comprehensive strategies to ensure that persons with albinism are afforded equal protection under the law and in practice.
Beyond the myths and within their rights, people with albinism are human beings. The worst expression of discrimination against persons with albinism is their dehumanization, which lays the foundation for horrifying physical attacks against them. Because some believe that they are magical beings or ghosts, they mutilate or even kill them so their body parts can be used for witchcraft rituals. These attacks claim many lives and surviving victims and their families experience severe trauma. Persons with albinism deserve to have their rights to life and security protected, as well as the right not to be subjected to torture and ill-treatment. Education and awareness-raising campaigns can help combat superstition and stigma associated with albinism. Attacks against people with albinism are met with indifference Hundreds of ritual attacks against persons with albinism, particularly children,
have been reported in various countries. Many more cases remain undocumented or unreported because of the ostracism of victims and their families, as well as the secret nature of witchcraft. The violence is largely met by social silence and indifference, and is seldom followed by investigations or the prosecution of perpetrators. The impunity for killings and attacks against persons with albinism is a concern. While some investigation and prosecution seem to take place, sentencing appears to be rare. Victims face significant difficulties in bringing their cases to justice, fearing retaliatory attacks or further stigmatization. Without effective and affordable access to justice, persons with albinism cannot claim their rights and contest the human rights violations to which they are subjected.
The State's obligation to criminalize, investigate and prosecute perpetrators of such crimes is particularly critical due to the vulnerability of persons with albinism. Commitment to do so by States would ensure access to effective remedies, redress and rehabilitation, including medical and psychological care, for the survivors and their families.
REFERENCES
1. Summers C. G. Albinism: classification, clinical characteristics, and recent findings. Optom Vis Sci. 2009 Jun. 86(6): 659-62.
2. Schiaffino M. V, Tacchetti C. The ocular albinism type 1 (OA1) protein and the evidence for an intracellular signal transduction system involved in melanosome biogenesis. Pigment Cell Res. 2005 Aug. 18(4) : 227-33.
3. Innamorati G., Piccirillo R., Bagnato P., Palmisano I., Schiaffino M. V. The melanosomal/lysosomal protein OA1 has properties of a G protein-coupled receptor.Pigment Cell Res. 2006 Apr. 19(2) : 125-35.
4. Wang T., Waters C.T., Jakins T., et al. Temperature sensitive oculocutaneous albinism associated with missense changes in the tyrosinase gene. Br J Ophthalmol. 2005 Oct. 89(10) : 1383-4.
Материал поступил в редакцию 17.10.2016
© Кадирова Д. З., 2016
