Under the Same Sun

Last Thursday I had the chance to visit an NGO called Under the Same Sun. It is an NGO that educates about Albinism, and advocates for persons with Albinism. I had heard about the NGO while still back at home, and was especially intruiged as its Founder and CEO is Peter Ash, a Langley resident (and Person with Albinism). While I am usually quick in updating what I have seen, heard and done here, I have had to take some time to sit and reflect on the visit before feeling able to tackle trying to explain the experience. Mostly I am just overwhelmed at the injustice of what can happen to those persons with Albinism here, and saddened (and shocked) at how the abundance of naiveity or a lack of education on a genetic condition can lead to the slaughter and death of innocent people. The uneducation combined with the misinformation (a high percentage of population believes in witchcraft and consults witch docotrs) can mean living a life in fear of attack (or worse) for a person with Albinism. What originally intruiged me about this NGO was the Canadian (and Langley) roots. It turns out the office is less than a five minute drive from our guest house. On Thursday we sat down in their board room and were provided with the chance to hear the background of the organization, as well as ask questions to the staff. Before trying to explain further, maybe first I will give a exceprt from their website about who they are and what they do. 

Peter Ash, Founder and CEO

Under The Same Sun (UTSS) Fund is a Canadian, federally registered, non-profit organization founded in 2008 by the current CEO, Peter Ash. UTSS Fund is investing significantly within Tanzania to improve the lives of  Persons With Albinism (PWA) by establishing a well staffed office and resource center there. Our primary focus is on advocacy and education as well as assisting PWA to access external information, education bursaries, health care and other community supports available to assist with their genetic condition.

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. In Tanzania, and throughout East Africa, albinism is much more prevalent, with estimates of 1 in 2,000 people being affected. The term “person with albinism” (PWA) is preferred to the term “albino”.

 There are four main challenges that persons with Albinism in Tanzania face. (some of this I have also borrowed from their website 
/http://www.underthesamesun.com/ )
1) The horror of the rapidly growing industry in the sale of Albino body parts

This unimaginable evil is driven by the belief (in some areas of the country) that the body parts of PWA possess magical powers capable of bringing riches if used in potions produced by local witchdoctors. Between 2007 & the present, official reports indicate that 68 PWA have been brutally attacked and their body parts hacked off and sold to witchdoctors. Of the 68 attacks, 59 were murders and 9 are mutilated survivors. Leaders in the albinism community believe the actual number of attacks & deaths are closer to 100 or more. Reports also indicate that albino body parts are being exported outside of Tanzania. (See the UTSS website for survivor honor roll stories, and awareness and advocacy materials)

2) Lack of Low Vision and Aids

There is a considerable lack of glasses, magnifiers and specialized vision sensitive computer equipment in Tanzania. This results in tremendous difficulty completing educational programs, increasing the likelihood of dropping out and subsequent unemployment. 11 out of the 13 staff at UTSS are presons with Albinism, and what intriguied me is that a handful were former teachers, or worked for the ministry of education in Tanzania. Their gifts for teaching are now being used through UTSS to provide education opportunities to those that may not have otherwise had a chance. Providing scholarships and the chance for further education for persons with Albinism is one of their major initiatives.  Currently they are supporting 318 students with Albinism from nursery school through to PhD level. The scholarships assist with education fees, as well as provide medical treatment for skin cancer and visual aid. Many students with Albinism drop out of school around grade 7, as  the education system here often cannot take into account low vision. Things as simple as the font being too small on a test, or the writing on the blackboard being illegible can inhibit a student from passing into the higher level grades. This resonated with me, and frustrated me, having worked as an educational assistant for a few years, and realizing how blessed we are in Canada to have the AMAZING resources and computer technology that we do. Having those resources (or even the man power for things such as scribing for tests, or reading questions and passages for students that struggle either visually or otherwise) can make the difference between being able to complete education, or having to withdraw. 

3) Epidemic Rates of Skin Cancer

The lack of, or reduced levels of, melanin in the skin of a PWA creates high risk for skin cancer due to sun exposure. Combine this with the profound lack of protective sunscreens, wide brimmed hats and proper clothing in Tanzania and you find epidemic rates of skin cancer in all ages. As a result, the average life expectancy for a PWA in Tanzania is 30 years, with only 2% living beyond 40 years. In countries and circumstances where adequate health care is provided and widely known, PWA have the same life expectancy as the general population. What inspired me most about this, is how easy it is to make a small difference through this NGO by the donation of practical items. Part of what they do is collect donations of protective sunscreens, wide brimmed hats and proper clothing, and dispurse them to local persons with Albinism.  

4) Widespread Social Discrimination Fueled by Powerful Myths

In sub Saharan Africa, there has been a long standing and widespread lack of public awareness about albinism. Powerful myths surround albinism, including these:

• PWA never die - They simply vanish - They are not human - They are ghosts.
• PWA are born to black women who have slept with a white man, or a European ghost. (Most women giving birth to a baby with albinism are abandoned by the father of the child. In most cases, neither parent knows that the father always carries the gene as well as the mother.)
• A PWA is a curse from the gods or from dead ancestors. As a result, touching a PWA will bring bad luck, sickness or even death.

As a result of these and other myths, many families do not bother to educate their children with albinism. Also, employers avoid hiring a PWA due to fears that their customers and staff will "catch" the condition, or that food would be contaminated. Sadly, in some social settings, many PWA are not offered the same kind of social & physical contact, due to this kind of misinformation. (see their myth-busting brochure for more information... http://www.underthesamesun.com/sites/default/files/UTSS-Brochure-Myth-Busting.pdf)


Having the chance to hear the stories of the staff at UTSS (especially how they all came to work for the organization in the past few years) was a powerful example to me of how God has a hand in our lives, ALL lives, whether in Langley, in Dar or elsewhere. He can call us, and use us to do His work. I admire Peter's bravery in taking on this initiative from half way across the world, and am inspired by what it has turned into in only its first few years. I am saddened by the stories of the attacks on the persons with Albinism, and frustrated by the motives behind the attacks (and the lack of support and protection from government officials who contribute to the practice) I feel a pull toward this NGO as I am encouraged that one of their biggest initiatives is education and advocacy (maybe that is the teacher in me), as well as the practicality of making a difference by donating to a scholarship fund or else practical items such as suncreen and sun glasses. We are going to be visiting again to attend and possibly assist with a low vision clinic that UTSS is offering in mid june for the local population (mainly children) with Albinism. In the meantime I am left in deep in thought.

“Education is the most powerful weapon, which you can use to change the world.”
- Nelson Mandella