All About Albinism - Albinism Awareness Day
June 27 2017 By Justene Smith
On the second International Albinism Awareness Day, disability equity solutions company, Progression Transformation Enablers, calls on South Africans to embrace people with albinism, especially in a time when diversity is encouraged and inclusivity and acceptance are priorities.
Albinism refers to a group of rare genetic disorders that cause a lack or complete loss of pigment, specifically melanin, in the skin, hair, irises of the eyes and the retina, which is the light-sensitive tissue at the back of the eye. The resulting lighter coloured skin is more vulnerable to ultraviolet (UV) rays. Pigmentation in the eye is essential for normal vision and Albinism therefore often leads to a variety of visual impairments. These impairments include repetitive, uncontrolled movements of the eyes (nystagmus), eyes that do not look in the same direction (strabismus), increased sensitivity to light (photophobia) and extreme near- or far-sightedness.
Justene Smith, disability expert at Progression says people with albinism have been ridiculed and misunderstood for centuries. "No one should be discriminated against or subject to violence and ridicule because of their appearance. Unfortunately, this is not the case for many and multiple forms of discrimination plague the lives of people with albinism."
Smith says cases of violence towards people with albinism are increasing at an alarming rate. "Recent reports highlight that in Malawi people with albinism are being hunted for their bones and body parts and the perpetrators are going unpunished.
"According to Amnesty International UK, 45 incidents of murder, attempted murder, abduction and attempted abduction of people with albinism were reported last year alone.
"Even the dead are not left in peace and police recorded at least 39 people with albinism being illegally exhumed from graves or having body parts removed from their corpses. Unfortunately, there is no sign of the number decreasing this year."
These attacks stem from centuries-old beliefs, myths and superstitions in some cultures.
Winnie Mbatha, a learner with albinism, who often attends training at Progression, discusses some of these myths. "Different people and cultures have different beliefs about albinism. The most common beliefs and myths are: when a person with albinism passes on, they vanish and appear in a foreign country; they have a connection with ancestors; they have supernatural powers; their body parts can make a strong "muti" that guarantees success; when a person with albinism dies, they are not buried, but walk themselves into the ocean; they make debts disappear; they are not human; whenever you come across a person with albinism, you have to spit so that you don't have a child with albinism.
"These myths and superstitions are false. Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and eyes. We are as human as anyone else," says Mbatha.
People with albinism not only face challenges in society, but in the workplace too. All too often people with albinism are not provided with reasonable accommodation for their visual impairment.
According to the Employment Equity Act, reasonable accommodation can be defined as "any modification or adjustment to a job or to the working environment that will enable a person from a designated group to have access to, or participate or advance in employment". Not all people with albinism will need accommodations to successfully perform their jobs, while many others may only need a few accommodations.
Smith says the accommodations that employers can put in place for people with albinism are not major. "For people with visual impairments, hand-held magnifiers can assist a person when reading smaller print or hard copy text. Employers would need to consider the positioning of the person's desk and the lighting in their working environment. For example, a desk should not be directly in front of a window where the glare is high, lighting should not be spot lights and fluorescent lights should be fitted with anti-glare filters or tube covers.
"People with visual impairments should also take regular breaks from visually demanding work to avoid eye strain. Consideration should also be given to the length of time given for computer work. There are many tools available to make computer work easier. All Windows operating systems from Windows 7 and newer, have a pre-installed magnifier tool, which assists people with visual impairments when reading. Alternatively, there are other options such as JAWS or larger monitors," says Smith.
Mbatha says as a person with albinism, she has visual impairment. "My employers ensured that the office I'm placed in doesn't get too much sunlight. The windows are covered with blinds so that sunlight is reduced. They bought me a new desktop computer with a large monitor. My computer has special features that allow me to make adjustments, such as the brightness of the screen. The cleaners consult me before using any new cleaning products in my office as my skin is very sensitive and I may have a negative reaction."
Mbhata would like people to know that, above all, people with albinism are human. "Being a person with albinism is not a curse, nor does it mean your parents and family are cursed. A person with albinism is as human as anyone else. We have emotions, goals and dreams, just like any other person. There is no human being who can define what a "normal person" really is or how they should look. I find it hard to understand why our lives should be shortened because of others' false and barbaric beliefs. I should be accepted as a human and be given the freedom to live my life as a free and confident woman. I do not want to be isolated or discriminated against by others just because I have a different colour skin. I love myself as I am and urge others to do the same."