Josephat Torner risks his life for change and acceptance

How many of us are willing to confront people willing to kill us - or who think we are cursed?  Not to blame or chastise, but to reach out and to educate?  Josephat Torner is a man with albinism in Tanzania who decides to take on the fear and superstition personally, saying, "I need to change society so it can accept me."

He is the subject of a movie called "In the Shadow of the Sun" that is being screened at the Human Rights Watch Film Festival in DC on February 19th.  Asante Mariamu has worked with Josephat for over a year now, and he traveled with our group last summer, visiting rural communities and educating people about albinism.

The threat to Josephat's life is very real.  In each small town that the team visited, the first thing that he did was present himself to the local police station and register his presence in the community.  It was a not-too subtle way of saying: "I am here and I am not hiding." That's a powerful message for people with albinism in Tanzania, who often live on the margins of society.

We'll tell more of Josephat's story in another post, but for now - please mark you calendars and plan to join us at the West End Cinema in DC at 7:00 pm on February 19, 2014.  You'll be profoundly moved by his courage, and will understand why we are dedicated to helping Josephat change life for people with albinism in East Africa.

"In the Shadow of the Sun," a passionate look at acceptance and bravery.

Small change, big results.....

Dear Friends and supporters,

It's that time of year when charitable requests arrive with the frequency of Christmas and holiday cards.  Organizations like Asante Mariamu rely on small donors to run our programs.  $50 buys a Rafiki Pack full of sun protection gear for a student; $10 provides a hat and sunglasses; and $300 can educate a child for a year.  Recurring donors help us create sustainable programs with confidence.  If you can spare a donation at the end of 2013 - you can claim it on your taxes and help us reach more kids with albinism in East Africa.

It's easy to help - just follow the link to send a secure payment via PayPal.  Many thanks, and a very Happy New Year to you and yours.....

Click here to support our programs.

Purchase “Asante Angels” as a gift ... and help kids with albinism, too!

"Asante Angels" are a perfect holiday ornament, window hanging, or package decoration.  At $10 each, you can order several and have them on hand to thank teachers, neighbors, co-workers and friends.

  

The angels are handcrafted in Kenya and Uganda through a fair trade cooperative, and are made from banana fibers and sisal (5" tall).  Each includes a certificate confirming that your purchase benefits children in East Africa by covering the cost of sun-protective gear. 

If you are in the DC region, you can pick up your angels at the Washington Lee High School Holiday Shop on December 7th.  Angels can be also be delivered via USPS for an additional $2.50.  

Orders must be completed by November 29th.  Make payments via the Asante Mariamu website via PayPal or in person.   

Payment information: Make checks out to Asante Mariamu.  For PayPal, click "Donate" under "One Time Donation," reference Asante Angel in the "special comments to seller" section, and provide a shipping address if necessary. Payments should be $10 per angel, or $12.50 per angel with shipping.  

One Person Can Make a Huge Difference: an Eagle Scout helps Asante Mariamu

Over a year ago, Asante Mariamu received an email from Khai Fletcher, a teenager in Maryland.  Khai was a Boy Scout for years, and wanted to become an Eagle Scout.  He needed to plan and develop a service project, and he chose helping people with albinism in Tanzania.

It takes a lot of work to become an Eagle Scout.  Khai researched albinism, and learned how it impacts people in East Africa.  Over the next year, he planned, developed and participated in several awareness activities.  Khai spoke at Scout meetings, at his church and in his community; he enlisted friends and family to help; and hosted a Sun Drive to gather donations.

Through his efforts, Khai raised a lot of awareness about albinism and the threat of skin cancer.  He collected clothing, brimmed hats and many pairs of sunglasses.  He also held a car wash to raise money to buy monoculars for students with albinism -- and raised over $300!

We love working with young people, and Khai is a good example of how much one person can do to help.  Thanks so much to Khai's family, his troop and his community for supporting his hard work.  Asante sana, Khai!

Teaching just one person that albinism isn't a curse is worth it.

Georgia Gray, a student at Oxford University contacted Asante Mariamu last January, offering to help our organization.  We were fortunate that this compassionate and energetic young woman volunteered to travel to Tanzania with Doug this summer.  In the second part of her story, Georgia describes one of the success stories we encountered in Tanzania.  Asante Mariamu will work closely with Sister Maria Helena to expand her work and replicate it in other areas.

 

Sister Maria Helena is a nurse who lived in Wisconsin for over a decade when she heard the reports of the killings in Tanzania.  Originally from Tanzania herself, Sister Helena knew that her calling was to return to her home country in order to help children with albinism in any way she could.  She bought her own house and set up a small sanctuary, and children with albinism were brought to her for protection.   She provided these children with an education, food and a warm place to sleep. She gave them the safety that they often so desperately lacked within their own small rural villages.  

But more than that, these children were so very happy.  

For the small time we were there, we had met over a hundred albino children all in differing physical and mental states.  Often these children were shy and nervous in the presence of strangers.  Their skin, even at schools we visited, would frequently be already pock-marked with pre-melanomas and various skin tags across their face and arms.  One girl, just 11 years old, had a scar so deep on her face that at it’s height of infection her cheek bones must have been visible.  The scar wasn’t from some hideous attack, but merely from the sun.  Yet the children at Sister Helena’s, although young and none over 7, had the most pristine smooth skin imaginable. It was our last stop on our trip and we were all in awe at the remarkable condition of their skin. These children were being well cared for, especially with respect to the sun. 

Our journey was very difficult in this respect.  Although we met many people who dedicated their time and resources to keeping people with albinism safe and protected from attacks and the omnipresent threat of the sun, there were far too few resources to go around.  We provided hats, sunglasses and sun cream wherever we went, and indeed, there was no feeling quite as touching as seeing a class full of children proudly donning their orange sun hats and sunglasses. But by far the most valuable thing provided was education.  

Doug’s talks to children and parents alike will hopefully encourage the use of the hats and sunglasses, but will also serve to change the behaviour of the community itself.  If only one person at each place absorbed the facts about albinism, and could teach their neighbours or family members that it is not a curse, then the trip was worth every effort made in it. 

I’m writing my dissertation at the moment, and all I know now is how much I cannot begin to understand.  The problems in Tanzania are deep-rooted and incredibly powerful and will not be easy to change.  Whilst people have no alternatives to traditional beliefs you cannot expect behaviour to change markedly.  But that is what makes Asante Mariamu’s mission so important. It not only provides the tools to protect those individuals but arms people with the knowledge to change the way they think.  It will not be an easy ideology to change but I truly believe it can be done.  With Asante Mariamu’s work, not just individually but also by facilitating the amazing people we met in Tanzania, the problem can hopefully, finally, be solved.

We hope that Georgia will continue to use her considerable passion and talent to make a difference in this world, and we are grateful for her contributions.  Asante sana, Georgia – and what are you doing next summer? 

How do you give up one child to save two?

Georgia Gray, a student at Oxford University contacted Asante Mariamu last January, offering to help our organization.  We were fortunate that this compassionate and energetic young woman volunteered to travel to Tanzania with Doug this summer.  Here is her story.

About a month ago I travelled to Tanzania, under the guise of gathering information for my final year university dissertation.  I’d read all the papers recommended by my supervisors, scoured the library and emptied online journals of any relevant papers.   Ask me the difference between ocular and oculocutaneous albinism and I’d be able to reel off the facts in the order they were discovered. Tell me to draw a genetic diagram explaining albinism inheritance and I could do it in a heartbeat.  Colour coded.  Tell me that the trip I was set to embark on made this information completely redundant and I’d probably have a hard time believing you.

We’ve all read the stories, and heard the news reports detailing the absolutely horrific crimes going on in Tanzania today.  And as a fledgling student, eager and willing to solve the problems of the world through my one paper, I couldn’t be more excited to tackle the problem head on.  Surely, I thought, this wasn’t that complicated. 

I got my first taste of reality no more than twelve hours into the trip.  Speaking to Reverend Bartholomew of Bishop Mpango School, I asked him about any stories of attacks within the region.  Had any albinos he knew been attacked?  He looked at me like I was from another planet, before affirming the question, that yes of course he knew of attacks.  Yes the children in his school had been attacked.  Yes the people we were to meet the next day had been threatened countless times, were scared to leave their own home, had hidden themselves or their family for many years.  ‘Look at this woman,’ he said to us just the morning after.  ‘This woman had one of her children taken and murdered, with the attackers threatening the life of her two non-albino children in exchange for her albino child.’  She had had to make a decision so disgustingly horrifying, so completely against every primal extinct we have; in order to save her other two children. 

I couldn’t even begin to comprehend how this woman was still here, still in fine mental health, with another child breastfeeding quietly at her chest.  But I was soon to learn that such stories were commonplace in these areas, that everyone, be it mother, father, brother, sister or neighbour had another horrific tale to divulge.  It was routine, and for every mother who had had her child taken, there was a father who could not even mourn for his deceased child because of the all too common act of grave-robbing albino graves.  

The people we met out there, whether they were church leaders, or fellow non-profit organisations were all so startlingly brave in the face of such limited community support.  They were going into extremely rural areas and combating an ingrained social issue with extremely limited financial or physical support.  It was often a thankless task: the government had little involvement, and the people we were helping were at direct threat from the community they lived within.  Thankfully, we worked with people on the ground who saw it as their utmost duty to help the most vulnerable members of their society.

Georgia has more to say about her trip, and the bravery she encountered.  Her next post will introduce one of our heroes, Sister Maria Helena.

Doug gets his goat(s)

The Asante Mariamu team traveled into the Serengeti to meet rural villagers with albinism‬. Here is Doug with Ngongo (the person with the stick) and one of his 13 wives (far left). Ngongo has 3 grandchildren with albinism, and the goats were given to thank Doug for holding the first Albinism Awareness Day in the region. The grandchildren were in school with Sister Helena. It was one of Doug's favorite days.