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. 

NBA star Stephen Curry visits Tanzania, meets Kabanga Center's coordinator

As part of the Nothing But Nets campaign, NBA basketball player Stephen Curry recently visited Tanzania to distribute anti-malaria bed nets.  While in the Kigoma region, he met Mr. Samuel Stephen, who is in charge of the Kabanga Protectorate Center, home to almost 70 children with albinism.  Mr. Stephen explained the dire situation faced by the albino children housed at Kabanga, and also the impact the lack of adequate drinking water on their health and education.

Asante Mariamu witnessed the effect of the lack of clean drinking water last summer.  In addition to the dangers of dehydration, the overcrowded facility lacked adequate washing facilities and working plumbing.  The lack of clean water created serious health risks, but also diminished the basic human dignity of the children and families living at the center.

Mr. Stephen asked the NBA star for help in raising the $25,000 needed to solve this problem - which is all it would take to create a new sanitation system, including a new well.  It seems like such a small amount, but for the close to 200 disabled children living there, it could make a world of difference.  I am keeping my fingers crossed that Stephen Curry will find a way to help.

A Student Leaves Kabanga Protectorate Center to Excel in Secondary School

I first met Asrafil in March of 2012 on my first trip to Kabanga.  Gangly with a friendly smile, we made an easy connection.  At first, I thought his name was Rafiki, which means "friend" in Swahili.  I am not sure if it was a miscommunication or simply an expression of his nature.

Asrafil told me that he was 18 and just finishing up primary school, and that he wanted to be an engineer or architect someday.  I asked him if he was going to go to secondary school, and he said he had no idea.  He wasn't sure if his grades would be good enough to get in, and he had no idea how he would pay for it anyway.  He had been living at the Kabanga Protectorate Center for a couple of years, and was ready to move on, but had no plans.

When our team arrived in July, he was still there, and still friendly.  He helped us paint blackboards, hang artwork, and work with the little kids.  As with so many of the other kids at Kabanga, I didn't know how to say goodbye to him.  I've thought about him over the last year, and was hoping to get an update on how he was doing.

I am so happy to report that he is one of the highest performing students at Bishop Mpango Secondary School, and was just elected Chairperson of the newly-formed Kibondo Tanzania Albino Society! Asrafil was brought back to Kibondo because his family was there, and he found a spot at Bishop Mpango.  His studies are going very well, and he is a leader in his community, and an excellent role model.

One of our goals for the AM 2013 trip was to start new TAS chapters in rural outposts, and the people with albinism in Kibondo elected Asrafil to represent them.  Our team provided the newest TAS Chairperson with a cell phone and a resource book full of educational information in English and Swahili, and organized a planning meeting to outline some ideas for the next year.

Asrafil is doing an amazing job, and we hope he continues to be an inspiration to those around him.  Now, in a shameless plea for help, we are looking for people to help us sponsor his education through to completion.  We don't want Asrafil and his family to stress about whether or not they can provide tuition money, or if the school is going to just float him.  We want him to know that as long as he is doing well in school, we will provide for his tuition and fees. Tuition and fees at Bishop Mpango total $500 a year, which is less that $10 a week.  If you would like to help us provide for Asrafil's education, please visit our website, or email me at Susan@Asante-Mariamu.org.  Asante sana!

Albinism awareness event in Tanzania: both a hidden child and a witch doctor attend

News from Doug has been sporadic, but our partners on the ground have been filling us in on the trip so far.  One of the most meaningful things to come out of our first awareness event in Kibondo was that a father who has been hiding his son since his birth finally felt safe enough to bring him out in public.  The boy is 3 years old, and has never been into the village.  The dad learned about albinism, and how to care for his son; and the little boy received his first hat, sunscreen and pair of sunglassses.

Doug met another father who has been hiding is 30 year-old daughter for 6 years - from when the killings began.  He does not think it is safe to bring his daughter out in public yet, but was encouraged by the event.

It was unsettling to learn afterwards that a witch doctor was in attendance - and had been invited.  However, one of the realities we accept is that witch doctors are integral to Tanzanian society, and we are better off educating them than fearing or shunning them.  When I asked if the witch doctor's opinion about albinism had changed, I was told that it had, and that he feels differently now.  Apparently, he even suggested that we invite all of the witch doctors in the region to the event in 2014.

I'm not sure about going that far, but I think we are taking steps in the right direction.

Our event was attended by almost 600 people, including numerous local dignitaries and journalists. The ability to spread awareness about albinism to so many people far surpassed our expectations, and we are indebted to Reverend Bartholomew Segu for organizing the event.   However, the most significant impact of our time in Kibondo will always be that a 3 year old child went to his village for the first time.

An Abundance of Supplies and Karma

I thought I would have some time to unwind and relax after sending Doug off to Tanzania, but nothing could be further than the truth.  It's been a bit of a crazy week, but I am grateful for the abundance of supplies and opportunities:

We packed and repacked for days; and in the end, Doug and our team took 350 pairs of sunglasses, 280 low-vision devices, 280 Asante-orange hats, thousands of posters and pamphlets, 4 resource books to help new albinism advocacy groups — and lots of good wishes.

Two days later, we had a fantastic last minute opportunity to ship supplies to Kenya with friends who are moving there for a new job.  Thanks to Michelle and Chris, we were able to send 500 pairs of sunglasses, 280 long-sleeve shirts; and hundreds of low-vision devices, including 312 hand-held magnifiers, 20 monoculars, 160 cylinder magnifiers, 43 large magnifiers and 23 stand magnifiers.  I can't imagine how many single suitcases it would have taken us to get all of that material to East Africa!

Also, we were able to meet Tara Sullivan, author of Golden Boy - a new coming-of-age novel about a 13 year old boy with albinism in Tanzania.  Tara is appearing at One More Page Books in Arlington on Tuesday, and we were lucky to get to pepper her with questions and get a preview of her presentation.  Please come if you are able, or order her book from OMP.  It's a great story.

To end the week, I had a meeting with Arlington Academy of Hope, an NGO that works in Uganda.  We were discussing the huge success of our Rafiki Pack program, and ways to expand it. They invited us to travel with them to Uganda to develop an albinism awareness program there!

And finally, bringing it all full circle, I received an email from Mariamu.  She is doing well, and is so excited that our work is continuing in her name.  Telling her about what Doug is working on this week in Tanzania, and how we are expanding into Kenya and Uganda was a powerful testament to her inspiration.  All in all, it's been a good week.  Stay tuned for updates from Doug, and thanks for the support.

The beginning of an adventure...

I have been trying to write the next trip update, but have been stymied on how to start.  Well, it just hit me.

I've been fortunate to talk to Doug several times via FaceTime, and he's had some unforgettable experiences already.  From having to convince the Customs Agent in Dar es Salaam that the Minister of Health did not need to personally certify that the 300 pairs of sunglasses he brought were safe to use as medical devices -- to being woken up at 3am by an elephant eating palm fruit outside of his tent -- it's already been an adventure.

Last night, he met with the leaders of the Tanzanian Albino Society and shared our new resource book for people with albinism, and agreed on ways to move forward in partnership.  He'll be traveling with others from TAS in the next two weeks in three different rural areas, leading awareness and advocacy events, and distributing all of the donated supplies to hundred of people with albinism.

I just received an email from our friend Reverend Bartholomew, and Doug and the team has arrived safely in Kibondo, and tomorrow is the first official event.  We are very excited and grateful for all the support we are receiving on the ground from our partners in Tanzania, and from our friends at home.  Asante sana!

Tanzania 2.0: Bittersweet

Doug left for Tanzania last night, full of plans and good intentions.  He is still in the air – somewhere over Africa. I envy the anticipation and the imminence of his experience. It is a bittersweet thing, to send him off.

Every plan is still possible. He hasn’t run into any roadblocks – cultural or literal.  He hasn’t missed a chance or made a misstep. Not that he will, mind you; it’s just the perfection of possibility.

Also, he hasn’t had his heart broken yet.  He hasn’t had to confront how dire the situation is for African children with albinism.  He hasn’t had to walk away from a child that needs so much more than a hat and sunglasses. 

I also envy his “first time in Africa” experience.  Friends of mine who work in Africa will roll their eyes at how this sounds, but there really is nothing – nowhere – like Africa.  I know he will love it, and will soak up every part of it without reservation or judgment.

He is carrying part of me with him – literally.  He took a small portion of my mother’s ashes with him to sprinkle somewhere in Tanzania. Partly because she was the first person to support Asante Mariamu, and partly because she would have loved to have gone herself.  In her place is another early Asante Mariamu supporter and volunteer named Sharon Turtoro, who was my mother’s best friend.  Sharon nursed my mom all last summer, and was there when I couldn’t be.  I am glad she is with Doug now.

I will provide updates as I get them, and more details in the days to come.  Our deepest thanks to everyone who has donated time, money, clothing, sunscreen and talent to make this journey possible.

Love,

Susan.

A Remarkable Story: Habo, Golden Boy

Yesterday was a special day for people with albinism in Tanzania, and it is likely that none of them know it.  No one in Tanzania has heard of Habo - but hopefully, that will soon change.  A new book debuted that sheds light on the myths that surround albinos in Tanzania, and the danger they live with every day.  Tara Sullivan is a first-time author, and with "Golden Boy," she's drawn a perceptive portrait of a young boy with albinism who struggles against poverty, prejudice and murderous intent to find his place in the world.  This book could bring a new awareness to the plight of people with albinism in Tanzania.

Albinos in Tanzania aren't just shunned and discriminated against - they are hunted for their body parts to fuel a black market.  Witch doctors promote the myth that the hair, skin and limbs of people with albinism can be made into potions that bring wealth or luck.  As a result, over one hundred people with albinism have been murdered or mutilated in the last five years.  Asante Mariamu Foundation works to raise awareness about this issue, and help people with albinism in Tanzania

In "Golden Boy," Habo lives in relative peace with his mother, sister and brother in a rural Tanzanian village, barely surviving as subsistence farmers.  When his family is forced to leave the security of his village, Habo is confronted with the ugly reality that face people with albinism all throughout Tanzania.  They are treated as curses, and viewed as a "walking paycheck" by many.  Habo realizes that he must leave the comparative security of his family to seek safety in a large city.  What happens is a coming-of-age story that weaves accepting albinism with growing up against the backdrop of gruesome myths that surround albinism in Tanzania.

The story is compelling because of the subject matter, but it is memorable because of Habo.  Like a lot of teens, he is a study in contrasts: proud, confused, afraid, brave, stubborn and perserverant - and it is gratifying to watch him take the journey into adulthood.  People with albinism in Tanzania deserve the same chance to seek peace and fulfillment, and this book might be a step in that direction by raising awareness.
Check out this review in the Wall Street Journal: http://tinyurl.com/ouksutf

Tanzania Trip Report? What trip report?

I am not sure why it is still so hard to write about our trip to Kabanga - even months after returning home.  Looking through the pictures of the kids we worked with makes me realize that we have to tell their stories, even though it is hard.

We prepared ourselves as much as possible for what we would find at Kabanga, but there was no way to fully understand life in the compound until we were there.  The high brick wall that encircles the space - topped with bits of jagged glass - became an obvious and painful symbol of the isolation of people with albinism within Tanzania.  Guards with machine guns patrolled the perimeter after dark, and the local villagers were reluctant to enter the walls of the compound.

Even under these circumstances, there was still joy.  We met wonderful teachers, caring parents and very bright children.  I promise to try and do them justice in the coming weeks with pictures and stories.  To see some beautiful portraits of the people of Kabanga taken by our partner Jacquelyn Martin, take a look at this NPR story:

http://www.npr.org/blogs/pictureshow/2012/11/21/165652046/portraits-of-albinism-letting-an-inner-light-shine

Packing: what to leave behind

We each get to carry two bags of 50.7 pounds each, and I have been shifting, packing, sorting, prioritizing, eliminating and adding back in for a few days now.

Does it matter if I leave 5 hats here or 7 magnifiers?  What about 6 books?  Should I dump the teddy bears for toothbrushes?  For children who have nothing, what matters most? Probably nothing I can fit in my suitcase......

The Stolen Child: How a Three Year Old Boy With Albinism Vanished

How does a three year-old child, with no passport, visa or other documentation cross two international borders?  A child with albinism has been stolen -- or sold – and no one has any information.

Dr. Pius Kamau, a surgeon from Colorado was traveling in his native Kenya when he witnessed a bizarre incident.  Three men were arguing with a Kenyan Airways attendant in the Nairobi airport.  They were trying to board a plane to Burkina Faso, clutching a sleepy boy with albinism.  The men were belligerent because the attendant was questioning their right to travel from Tanzania with a child for whom they had no documentation.  In a world of TSA body scans, barefoot security lines and multiple checkpoints, it seems impossible that one could travel with an undocumented child. 

However, the rules are different for children with albinism.  The men bullied their way onto the flight to Burkina Faso, effectively sidestepping regulations in Tanzania and Kenya.  How could this happen? 

It could happen because, as Dr. Kamau noted, children with albinism in East Africa are the children of a lesser god.  Many in East Africa view albinism as a curse, and the body parts of people with albinism are sold on a gruesome black market.  Witch doctors claim to be able to make potions from the body parts to confer wealth or luck.  According to Under the Same Sun, there have been 78 murders of people with albinism in Tanzania alone, and an additional 21 non-fatal attacks.

 Where were the child’s parents?  Why hasn’t anyone reported the abduction? Why would Tanzanian officials even let them out of the country? Dr. Kamau and others have made calls to the airlines, government officials and the Tanzanian Embassy – all to no avail.  No one seems to be willing to talk about a three year-old child, perhaps stolen away to a terrible fate.

As a parent, it is incomprehensible to me that a child can just vanish, and that no family is stepping up to ask questions.  I am also the mother of two children with albinism, which makes this personally haunting.  It may be that there is an acceptable explanation as to what happened.  If that is true, why is the airline refusing to answer questions? 

I fear that this child has been lost to a culture of cruelty and ignorance, where albinism renders one less than human.  Two years ago, I founded an organization dedicated to helping people with albinism in East Africa called Asante Mariamu.  I will be traveling to Tanzania in three weeks with several friends to work at a school that is home to over 70 children with albinism.  I will look for answers in the faces of the people I meet, and continue to work to change the perception about albinism all over the world.  All children with albinism – mine included – deserve this very basic human dignity.

Reverend Bartholomew and the kids

We just hosted our friend, Reverend Bartholomew from Tanzania for the weekend.  He was here for our fundraiser, and to meet the people who have supported Asante Mariamu.  It was an amazing experience, from listening to stories about his childhood, hearing his mother sing on YouTube, to learning that he and his beautiful wife Mary are adopting a little girl with albinism.

Rev. Barth has gone from living hand to mouth in a small house with a grass roof, to earning a master's degree with honors from a university in Pennsylvania.  He heads back to Tanzania this week to help prepare for our upcoming trip and to assume his new role in his Anglican diocese in Western Tanzania.

He is a very warm and engaging person, and has an infectious laugh.  I am so grateful that he is fluent in English, because I would hate to miss all of his good advice and keen observations on working in Africa.  Without his help, we would not be able to be effective and accountable in Tanzania.  He has truly made our work possible, and I am confident that together we will make positive changes!

I hope he enjoyed his stay here, and that he feels a part of the Asante Mariamu family - and a part of our family.  It was wonderful to have him at our fundraiser, and I am looking forward to seeing him again in a few weeks!

Swift codes, money, chickens and cupcakes

I just got back from the bank, where I wired over $4,000 to the Kabanga School.  It took a lot of time to raise that money (and thanks to all of you who helped), and I wanted to share with you a bit about how we did it, and exactly what it will be used for in Tanzania.

First, we only have a handful of supporters who have written us checks for over $100.  That means that the bulk of the money comes from the sale of small handcrafted items and in $25 and $50 increments: mostly from family, friends and students.   We've had barbecue dinners, backyard concerts, bake sales and holiday craft sales.  Each of these events required many volunteer hours from my family and friends: baking,  cooking, hosting, hauling and cleaning up.  We've talked to thousands of people, written hundreds of letters and sent uncounted emails.   I've developed a passion for making earrings; and again, my friends are my best customers!  I have also started writing grants, but for now, we are raising each dollar one at a time.

So, where does it go?  Well, the Kabanga School has given us a list of priorities, and we purchased a computer for them last August, and then furniture for the dining hall.  The $4,000 I just sent is to cover three things: a poultry project; a washing stand and a sewing project.  Currently, over 250 people use one wash stand with two spigots to do all of the laundry, personal hygiene, food preparation and cleaning.  The new wash stand will have six stations and a roof to protect the people with albinism from the sun.

There are approximately a dozen mothers living at the school, and about half of them have albinism.  They are living at Kabanga because they fear for their lives or because their family has rejected them for having a child with albinism.  They have nothing to do all day, and have asked for some kind of vocational training.  We are working with the Red Cross to build a poultry project at the school, so that the moms can have an income from eggs and meat.  We also are paying for the supplies for a sewing project.  One of the mothers is an accomplished tailor, and she will train the others to make clothing and other items to sell in the village.  Not only will this provide them with a small income, a measure of independence and empowerment - but it will begin to create a positive relationship between the villagers and the school.

All of this will take time, and we hope to see some of it in place when we travel to Kabanga in June.  I look forward to posting updates and pictures soon.  Our next fundraiser in another concert on May 19th (limited tickets available soon!), and that money will be used to purchase books and school supplies for the school.  We hope to build a small library while we are there in June.  Saying 'thank you' to everyone for all of the incredible support isn't adequate to convey our deep appreciation, but hopefully the photos and stories will show how much it means to us and to the people of Kabanga.

The Newest "Albino" in the Movies: The Pirates, Band of Misfits

There are many stereotypes about albinism in our culture.  People routinely ask about "red eyes" and whether or not people with albinism (PWA) can see in the dark.  In movies and in literature, PWA are usually portrayed as other-wordly or evil (think DaVinci Code).   In our society, there is a link between these stereotypes and the bullying that many children with albinism face, just as there is a link between the myths surrounding albinism in East Africa and the horrific acts perpetrated against PWA in Tanzania and other countries.

As a result, sometimes PWA (and their families) react when another inappropriate cultural reference to albinism crops up in the news.  I think the Albino Rhino Beer controversy is a good example.  Several PWA albinism that I spoke with didn't have a problem with the restaurant offering the beer - it was kind of a "roll your eyes" moment.   A new claymation movie called The Pirates, Band of Misfits is about to open that features a character with albinism called The Albino Pirate.   Sigh.  I haven't seen it yet, but I have seen clips, and he has pinkish-red eyes.  I am kind of hoping that he will be the Hero Pirate who saves the day and ends up with the Surprisingly Curvaceous Pirate, but I am not betting on it.

My kids aren't really fazed by it - my son says he is too old to see the movie anyway. My daughter said she didn't care, but then launched into a two-minute civil rights discourse.....  ;-)   I love talking about this stuff with them, and I am sure we'll see the movie.  I'll report back afterwards......