People have a tendency to question, stare and often treat differently those who do not look, act or even smell like them.
‘This is a humiliating form of discrimination with sometimes, violent consequences for the ‘different person’. “But is that person different or does it show our bias and lack of
understanding and tolerance of others?” These sentiments were expressed in a statement by the Joburg City Council as it dedicates September to creating awareness about albinism.
“Albinism is an inherited condition (some say disease) caused by a substantially lower rate of melanin production, a pigment responsible for the colour of the skin, hair, and eyes. Affected people often have lighter coloured skin and hair than their other family or group members,” the statement explained.
It added, “Melanin normally protects the skin from damage caused by ultraviolet light making those with albinism more sensitive to sun exposure.” This then results in them suffering from vision problems resulting from the abnormal development of the retina and nerve connections between the eye and the brain causing vision problems.”
Most types of the condition are said to be inherited in an autosomal recessive inheritance pattern, meaning that a trait, disorder or disease can be passed down through families. “Two copies of an abnormal gene must be present in order for the disease or trait to develop.”Unfortunately, the parent who carries the gene often does not show
symptoms. If both parents carry the gene but have no symptoms, there is a one in four chances that their offspring will have albinism and there is one in two chance that the offspring will become a carrier. Also, they will have the gene but not have any symptoms.”
The statement added that an estimated one in 70 people carry the genes associated with albinism but are not affected by the mutations.
The City said all this does not mean that albinism makes affected persons abnormal as they too breathe, love, hurt, smile and enjoy life like everybody else. “Unfortunately, some of them are subjected to bullying, alienation, mockery and are mutilated for body parts for witchcraft or raped to fulfil a myth that they cure Aids.”
Also, associated social stigma affects them from a young age with resulting low self-esteem, dropping out of school, difficulty in social interaction, finding employment and they live in fear. The City appealed to unaffected residents to be considerate and support all initiatives to accommodate people with the condition, particularly, from a young age as they too have the same rights as everyone else and must be protected against all forms of abuse.
“A child with albinism can flourish and achieve the same education and employment as a person without the condition. Families should learn more about the condition and discuss it openly to gain better awareness and acceptance of albinism.”
The City’s plea also coincides with wider outcries for their protection after a man was sentenced for the calculated murder of a girl with the condition in Mpumalanga province and concerns in other countries where they are hunted down for witchcraft and other myths.
Albinism Society of South Africa said there are continental efforts to fighting severe discrimination of those affected and myths that they are magical.
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