R Magazine, Ex-TeenArt_Issue 1_Authenticity Mar. 2015 | Page 65

The one that pleases...
Albinism, a rare genetic disease characterized by a lack of pigmentation of the skin,
the hair and theeyes, has always aroused fascination mixed with distrust. People
with that disease are at best ignored, and at worst avoided. However, in recent
years, some have seen a new criterion of beauty in this “non-color”. Thus, models
and actors have appeared on the front page of fashion magazines or in video clips.
We particularly think about Shaun Ross tenderly hugging Lana del Rey singing ‘Gods
and Monsters’ in the short film Tropico. The model Stephen Thompson, star of
the spring-summer 2011 collection by Givenchy, opened the way to his colleague
Thando Hoppa who is the new face of Vichy’s solar. The white shade is now affirmed
as the equal of its sisters.

The one that scares
But far from being perceived as an unusual criterion of beauty, albinism is still a
reason to exclude and assault people who are infected. Indeed, superstitions persist
in many African states including Tanzania, Ivory Coast and Burkina F
aso. Albinos’
body parts are being attributed magic powers that are sometimesbeneficial and
sometimes evil. These parts (head, leg, fingers) are popular among local witches
and may be sold for thousands of dollars on the black market. This sordid trade,
far from being the privilege of a few obscurantist, is still being practiced today
under the request of business people and politicians in search of luck and success.
Fortunately, there are many associations that provide assistance to albinos by raising
awareness towards the disease to put an end to popular beliefs. This preventive
work helps in changing mentalities, but mutilations and murders are still to be
deplored. Encouraging examples also emerge here and there recalling that albinism
is only a disease, and that the person who has it is an ordinary citizen, not an alleged
evil entity, and is equally capable of undertaking studies and career. This is the
case of Al Shaymaa Kwegyir, member of the Tanzanian parliament since 2008. This
woman with albinism has combined disease and professional success. She now tries
to make people recognize the place of albinos in Tanzanian society.
Long hidden or ignored, albinos’ voices and faces rise around the world to impose
their status as fullbeings, neither weird nor magic, but simply carrying a rare disease
and an additional shade of white.

Redaction : Linda Chaabna
Translation : Myriam
speaking about albinism//SOCIETY