I N T R O D U C T I O N
The purpose of this
page is to explore the mythology of albinism, to take an in-depth look at
the various ways in which this unique trait has been perceived and presented.
For more factual details about albinism, as well as resources for people
with albinism and their families, visit the home page of the
National Organization for Albinism and
Oculocutaneous albinism (OCA) is a rare, genetically inherited condition passed on by both parents to their offspring, resulting in a significant reduction in or absence of pigmentation in the hair, skin, and eyes at birth. Individuals with albinism are very fair-skinned and fair-haired, with (most often) blue eyes that can take on tones of purple or red in bright lighting. This striking appearance has fascinated humankind for centuries, drawing reactions ranging from veneration to alienation.
In some Asian societies dating back to ancient times, and in Europe during the Middle Ages and the Renaissance, fair skin was considered very attractive because it was thought to indicate wealth and high social status, as being tanned meant that one was obligated to work in the fields for one's livelihood. Similarly, the powdered white wig worn by American colonial era illuminati reflected the wearer's ability to afford luxury items and identified him as one of the educated elite.
Nevertheless, in nineteenth-century America, albinism was considered such a bizarre trait that people with this condition were exhibited in circus sideshows. Furthermore, with the advent of the camera, these individuals were featured on postcards which were widely distributed and collected from the 1870s-'90s. Photo studios such as those of Charles Eisenmann, Obermuller & Son, and Matthew Brady specialized in taking pictures of what were regarded as human oddities. Several of their photos appear on this page, courtesy of Marcel Safier, from whose Web site the pictures and related information were extracted.
Many Native American and South Pacific tribes believed that human beings and animals with albinism were messengers from divine entities. Some saw them as good omens and treated them with utmost respect, while others viewed their presence as a manifestation of wrongdoings within the tribe. In Africa, life has always been particularly difficult for people with albinism. Widespread poverty and ignorance about the condition deprives these individuals of much-needed protection from the burning sun. As a result, many die prematurely from skin cancer. Even if they do manage to avoid the strong sunlight, it often means a life of virtual solitary confinement and prohibition from participating in the daily activities of their kinship group.
Even today, a plethora of misconceptions about albinism persists. Bizarre characters (usually villains) labeled "albinos" with snow-white skin and hair, blood-red eyes, and supernatural powers plague the entertainment industry. Many people with albinism have been institutionalized and/or stripped of educational and vocational opportunities due to a misguided belief that the low vision accompanying the condition (on average, 20/200) prevents one from being able to adequately function in and contribute to society. Some members of the medical profession have even been known to recommend abortions to mothers carrying babies with albinism because it was thought that their children would die at an early age and would fail to lead productive lives.
NOAH (see above) is working hard to inform the public about exactly what albinism is and is not. Increased efforts are being made to reach the scientific and medical communities and the media, as well as to connect NOAH members with each other. Hopefully, circumstances will improve for those of us with albinism as more people become educated about our condition and are better able to appreciate everything we have to offer.
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