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......

Hearing is Believing at Kabanga with the Starkey Hearing Foundation

Asante Mariamu's mission is to serve children with albinism in Tanzania.  But sometimes, in order to do the right thing, you need to swerve from your path a bit.  When one of my best friends heard that there were over 45 deaf or hearing impaired students at the Kabanga School, she knew that she'd found a way to help.  Beth Connors is an audiologist, and she is traveling with me to Kabanga this summer.  But, like me, she was unsure of how her skills would translate on the ground.  She decided to see if there was a way to use her expertise at the school, and started making inquiries about getting hearing aids for the children.

Beth contacted the Starkey Hearing Foundation, and learned that they were organizing a mission trip to Tanzania in March.  It took a lot of emails, texts and coordination; but Beth managed to facilitate a mission trip where the students traveled 8 hours by bus to the clinic under the supervision of former-teacher-turned-audiology-student Issa Kambi (pictured above adjusting hearing aids).  Not only has Beth changed the lives of these students in a profound manner, but she has become a guardian angel/mentor to Issa.  This is all before even stepping foot in Tanzania.  For that, Beth, you are my hero!