People with albinism among those “left furthest behind”
International Albinism Awareness Day is an opportunity to educate people and to promote albinism awareness and commit to continue advocating for their rights.
Persons with Albinism are usually as healthy as the rest of the population, with growth and development occurring as normal, but can be classified as disabled because of their associated visual impairments
However, South Africans with albinism are among the most marginalised and vulnerable citizens yet still, very little attention is paid to protecting them from human rights violations. There remains great misunderstanding about people with the condition locally. In South Africa, persons with albinism are often still seen as having an illness, shame or curse because of their condition.
What is albinism
Albinism is a rare, non-contagious, genetically inherited difference present at birth where a person is unable to produce colouring of the skin, hair and eyes (lack of pigments). The condition can be limited to the eye or involve the eye and the skin. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world.
Statistics in Africa
Statistics on albinism are incomplete but studies quoted by the World Health Organization reported in 2006 gave prevalence rates in South Africa as around one in 4 000 individuals are estimated to be born with albinism, compared with about 1 in 20 000 worldwide.
Some reports put the prevalence as high as 1 in 1 000 for select populations in Zimbabwe and for other specific ethnic groups in Southern Africa.
Health challenges of people living with albinism
The lack of melanin means persons with albinism are highly vulnerable to developing skin cancer. In some countries, the majority of persons with albinism die from skin cancer between 30 and 40 years of age. Skin cancer is highly preventable when persons with albinism enjoy their right to health. This includes access to regular health checks, sunscreen, sunglasses and sun-protective clothing. In a significant number of countries, these life-saving means are unavailable or inaccessible to them.
Because pigmentation in the eye is essential for normal vision, albinism can lead to a variety of visual impairments such as repetitive, uncontrolled eye movements (nystagmus), eyes that do not look in the same direction (strabismus), increased sensitivity to light (photophobia) and extreme near- or far-sightedness.
Another kind of normal
“I now realize that I have a platform to inspire young girls, and as someone who never had a role model who looked like me when I was growing up, I now hope to be able to show that albinism can be beautiful and is just another kind of normal.” South Africa’s Thando Hopa is a model, lawyer, aspiring poet, and the first woman with albinism to appear on the cover of Vogue.
In the workplace
Not only do people with albinism face significant societal challenges, they often struggle to be accepted in the workplace too. Disability equity solutions company, Progression, says that the private and public sectors in South Africa need to embrace people with albinism and find ways to accommodate them in the workplace.
“Workplace accommodations that can be put in place for people with albinism are not major, but they are necessary,” says Disability expert at Progression, Justene Smith.
Here are some measures that organisations can put into place when employing people with albinism:
• Employers can provide hand-held magnifiers for people with visual impairments. This can assist a person when reading small print or hard-copy text.
• Employers 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. Spotlights should be avoided. 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 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 providing larger monitors.
• People with albinism have highly sensitive skin thus should not be exposed to direct sunlight. They should be given offices that do not get too much sunlight or windows need to be covered with blinds to reduce sunlight.
• Cleaners need to consult employees with albinism before using new cleaning products in the office as certain brands may react negatively with their skin.
To achieve an inclusive society, South Africans need to make simple accommodations for people with disabilities such as albinism, and to continue to fight stigma and encourage understanding.