Under the Same Sun
Under The Same Sun (UTSS) is a Christian charitable organization that promotes the wellbeing of persons with albinism (PWA) via education and advocacy. In most African countries, PWA are being discriminated against due to folklore arising around skin colour differences. In many of these countries "fatal discrimination" is occurring. (See External Links below for UTSS official website)
Watu Kama Sisi (People Like Us) report
In 2014, Under the Same Sun has issued its vision and goals in a report titled Watu Kama Sisi: Reducing Skin Cancer, Stigma and Violence Against Albinos in the Mara Region.[1]:1 Regarding persecution and health awareness for albinos the purpose of the current project is to dispel any superstitions associated with albinism and the potential for persecution by facilitating workshops in the villages targeting nine key villages in the Mara village where albinos are most prominent: Bukumi, Bugoji, Bwai Kwitururu, Chimati, Chitare, Chumwi, Kataryo, Kiriba and Wanyere. Here the aims of UTSS sensitize communities to albinism to reduce stigma, discrimination and violence through the form of Educating communities about the facts and falsehoods surrounding albinism, and therefore subsequently increasing community understanding, acceptance and respect toward albinism and the people who are suffering from persecution due to their condition. UTSS also works on an educational level to provide ways children with albinism with low vision can improve learning abilities and overall aiming to de-stigmatize albinism and facilitate social inclusion and safety of albinos in their families and local community.[1]:5
Problems with albinism in Africa
Persons with the genetic condition of albinism (commonly referred to as "albino") are being targeted for their body parts in witchcraft related killings. It is a common belief in most African countries that the body parts of a person with albinism (PWA) are able to bring them prosperity or luck when made into a potion or talisman by a witchdoctor (traditional healer). This puts all PWA in grave danger with the result that most live in fear, especially in the months leading up to an election when attacks tend to increase.
In Africa and worldwide, people with albinism are just like everyone else except for the 2 simple differences of low vision and the lack of pigment (colour) in their skin, hair and eyes.
Low vision is a major challenge. Almost all people with albinism are visually impaired, with the majority being classified as legally blind. Their condition, due to a lack of pigmentation in the eyes, causes vulnerability and high sensitivity to bright light making it difficult to see on sunny days and in brightly lit rooms. As well, they need to be very close to an object to see what most people can see at a distance. In most parts of Africa this is not understood, resulting in the belief that PWA are stupid, and therefore not able to be educated or employed. Many parent will not send their children with albinism to school, thinking it is a waste of their resources. With a little understanding and a few simple accommodations in the classroom or workplace, PWA are able to function like anyone else if given the chance.
Skin cancer is the number 1 killer of PWA in most equatorial African countries. Since albinism results from a lack of pigmentation (melanin) in the hair, skin and eyes, they have no natural protection from the sun's rays. For example; in Tanzania, less than 10% will live to age 30 and only 2% will live past the age of 40 due to skin cancer. Simple preventive measures such as the use of sun cream, sun glasses and long-sleeve shirts, pants & wide-brimmed hats will significantly reduce the risk of skin cancer. The emphasis must be placed on proper clothing since sunscreen is rarely available in most African countries and, when found, is too costly for most PWA to afford.
The prevalence of albinism is much higher in Africa. While numbers vary, in North America and Europe it is estimated that 1 in every 17,000 to 20,000 people have some form of albinism. In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 2,000 people being affected.
In Africa, PWA are viewed as mythical or magical beings instead of human beings. For this reason it is not always safe for them to access public services like hospitals, doctors, police, schools or to simply walk alone since they can never tell who might be looking at them as a source of money or good luck. This leaves the PWA with nowhere to go when in need and is primarily due to the dehumanizing beliefs about albinism passed down through the generations in mainstream African culture.
Common African folk beliefs about albinism are listed below as portrayed through the eyes of a person with albinism.
We Are Not Mythical Beings But Human Just Like You:
We Do Not Have Normal Vision Or Night Vision: The legends would have you believe that people with albinism have normal vision. In truth, all people with albinism are visually impaired AND have extreme sensitivity to light (due to the lack of melanin). When we are outdoors, it is important for us to wear sunglasses to protect our eyes from the sun. We usually require special glasses or magnifiers in order to read. Additionally we do not have special night vision; it is just easier for us to see when the glare of the sun is not hurting our eyes.
We Are Not Only In Africa: The stories would have you believe that people with albinism come from, and live only, in Africa. In truth, Albinism occurs in people of every race, tribe and nationality on planet earth. A beautiful thing about our albinism is that it serves as a visual symbol of racial unity worldwide. When a group of PWA from various nationalities stand alongside one another with the same skin colour, discrimination due to colour loses its power. Unfortunately, this unifying factor has not worked to our advantage within our own people groups because our white pigment stands out and separates us instead. Refilwe Modiselle, a South African fashion model with albinism said it best: "I'm the symbol of racial unity. I'm a black girl who lives in the skin of a white person and that alone should embody what a human being as a whole should represent."
We Are Not A Curse: The folk tales would have you believe that people with albinism are a curse from the gods or from dead ancestors and as a result, being in contact with us will bring bad luck, sickness or even death. In truth, our albinism is nothing more, or less, than a genetic condition of the human body. As such, we are simply human beings just like you and there is nothing magical or supernatural about us. You cannot "catch" albinism by touching us – it is not a disease and it is not contagious.
We Are Not Ghosts Who Vanish And Never Die: The stories would have you believe that people with albinism never die; that we are not human; that we are ghosts. In truth, the on-going kidnappings in Africa are the reason we "vanish" and the killings demonstrate that people with albinism definitely do die. Even in western pop culture, we have yet to see a positive and accurate portrayal of people with albinism in the arts, literature and the media. So far, Hollywood continuously portrayed us as villains, demons and ghosts. We are NOT ghosts. We are humans just like you. Our pale skin and hair is due to a genetic condition which results in us having little or no skin pigment called melanin.
It's Not My Mothers Fault That I Was Born With Albinism: Some would have you believe that it's my mother's fault that I was born with albinism. In most cases, our mothers are abandoned by our fathers after giving birth to us, saying it is her fault, that she had an affair with a white man or the ghost of a European. In truth, both my mother and my father must carry the albinism gene in order for me to be born with albinism.
We Are Not A Good Luck Charm: The superstitions would have you believe that a charm or potion made from the body parts of a person with albinism has magical powers; that it bringing its owner wealth, success and good luck. In truth, no one has ever become rich, successful or lucky from the use of body parts from a person with albinism. It comes from working hard.
We Are Not A Cure For AIDS: False information would have you believe that having sex with a person with albinism will cure AIDS. In truth, no one has ever been cured of AIDS by having sex with a person with albinism. All this does is spread the AIDS virus.
A few more things we would like you to know about albinism:
Why We Prefer The Term Person With Albinism: An ancient proverb says ‘Death and life are in the power of the tongue'. When you call me an albino, I feel like you are equating me to my most visible aspect, my colour, which is the result of a genetic condition called albinism. As the world advances the dignity of all persons, no one should be referred to solely by their genetic condition or disability. In reality, I am a person first, just like you, and would prefer to be called by my name. If you do want to make reference to my albinism, I would feel more respected if you called me a person with albinism (PWA).
We Dream of Global Equality: People with albinism worldwide seek a day when what we contribute is not limited because of how we are perceived. We dream of a day when we will take our rightful place in every level of every society, everywhere, at all times. (Peter Ash, Founder & CEO of UTSS)
Equal Opportunity Means Equal Success For Person With Albinism: As a person with albinism, I can achieve life goals just like anyone else. I can succeed in life (education, employment and love) and contribute to the growth of my society provided that I am empowered with the relevant resources offered to my fellow citizens without albinism. My low vision and sun sensitivity can very easily be accommodated for in the classroom and workplace. "Sometimes equality means treating people the same, despite their differences, and sometimes it means treating them as equals by accommodating their differences." (Judge Rosalie Abella, Report of the Commission on Equality in Employment, Canada) "I have a dream that one day, people with albinism will take their rightful place throughout every level of society, and that the days of discrimination against persons with albinism will be a faint memory." (Peter Ash, CEO & Founder, Under The Same Sun)
What Is Albinism?: Albinism is a rare, non-contagious, genetically inherited condition occurring in both genders regardless of ethnicity, in all countries of the world. BOTH the father and mother must carry the gene for it to be passed on even if they do not have albinism themselves. The condition results in a lack of pigmentation in the hair, skin and eyes, causing vulnerability to sun exposure and bright light. Almost all people with albinism are visually impaired, with the majority being classified as "legally blind". While numbers vary, in North America and Europe it is estimated that 1 in every 20,000 people have some form of albinism. Throughout East Africa, albinism is much more prevalent, with estimates of 1 in 1,400 people being affected. The term "person with albinism" is preferred to the term "albino".
Finally, due to this discrimination, employers almost always refuse to offer jobs to a PWA because they know that many people will avoid their business. This results in poverty and homelessness for PWA across Africa.[2]
References
- 1 2 Morton, T. (2014) Watu Kama Sisi: Reducing Skin Cancer, Stigma and Violence Against Albinos in the Mara Region. Under the Same Sun
- ↑ https://maps.google.ca/maps?client=safari&oe=UTF-8&safe=active&q=map+of+east+africa&ie=UTF-8&hq=&hnear=0x187215248481cf73:0x523b9426a36c703d,East+Africa&gl=ca&ei=2NGoUqeNGY_1oATp64CYDQ&ved=0CCsQ8gEwAA