Stigma is greatest challenge for people with albinism

2012-10-02 00:00

THE notion of albinism has always been a taboo subject, especially within black African communities. Apart from the medical challenges of skin sensitivity and visual impairment (to list the most common symptoms), as people with albinism, we find the stigma attached to it a far greater challenge.

September was Albinism Month and two Saturdays ago the Albinism Society of South Africa, in partnership with other governmental structures, NGOs and private entities hosted the Albinism Event in Soweto, Thokoza Park.

As guest speaker, I chose to make a few points of motivation, specifically geared to the youth.

 

• Love yourself. People with Albinism generally have low self-esteem which hinders their academic and social life. We have to reach a stage where before we expect others to respect and accept us, we first accept ourselves.

 

• Know yourself. If you don’t, others will know you wrongly. Often I encounter questions like ‘Are both your parents black or is either of them white?’ This clearly indicates that people are not informed about Albinism, its cause and historical background. Coupled with such ignorance are tenuous myths, such as those that we do not die, that we disappear. Without knowledge of the condition we live with, we cannot correctly respond to such questions.

 

• Live up to your aptitudes. Most people do not expect you to do so. It is both amazing and sad that every step of progress a person with albinism makes must be scrutinised. Questions like “How did you make it?” are often asked.

These questions are often not asked in a manner seeking advice, but against the backdrop of the erroneous perception that we cannot achieve anything in life. These propensities undermine our potential, especially in academics. For example, there is this exaggerated medical theory that people with albinism have very poor eyesight, so poor that we “cannot” (emphasis on the incapability rather than free will) drive a car. This theory is general and perpetuates the stigma attached to albinism in that it does not consider the facts of each case. It is possible (as in my case as well as in the case of others) to have eyesight problems, but not of such a severe nature that one cannot drive. The only disability I have known is an attitudinal one — one which says: “I cannot do this because I am like this or because so and so said I cannot do it”.

Often I am asked why I remain committed to the struggle for the rights of people with albinism and other disabilities. My response is always: “It is for the child born today.”

I look forward to the day when the Constitutional values of human dignity, equality and freedom will not just be understood, but enjoyed by all people with disabilities.

 

 

 

 

• For more information on Albinism, contact the Albinism Society of South Africa at sixth floor, Focus House, 86 Loveday Street, Johannesburg, P.O. Box 9881, Johannesburg 2000. Telephone and Fax: 011 838 6529.

WHAT IS ALBINISM?

 

ALBINISM is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin. Albinism results from inheritance of recessive gene alleles and is known to affect all vertebrates, including humans.

Albinism is associated with a number of vision defects and lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers.

PEOPLE ARE NOT INFORMED ABOUT ALBINISM, ITS CAUSE AND HISTORICAL BACKGROUND.

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