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!

Asante Mariamu joining 21st Century

Wish us luck as we attempt to use the Intertubes to spread awareness about the plight of people with albinism in Tanzania.  The blog is new, we have a YouTube account and a Flikr page,  the Facebook page is getting updates, I wrote down the Twitter password -- and signed up to automatically link blog posts to Twitter.  Let's see if it works!  Thanks to Liz and Zuraidah for lighting a fire....

We are looking for help and advice in spreading the word - chime in!

Fingers in the dust

There are a bunch of little kids at the Kabanga School who run around just like all 3-5 year olds -- getting in trouble, being sassy -- and exploring and creating their world.  These kids have a wall around their world to keep them safe, with a big black gate.  On the gate is the phrase "Huruhu siw kungia ndani bila kibali" which translates roughly into "No admittance without approval."

I don't think the little ones can read this yet, and I am not sure they would care, even if they could.  Because in typical kid-fashion, they are using the gate to suit their own needs: as a chalkboard.  After the older kids leave the compound to go to class, the little ones write letters, numbers and figures in the dust that coats the gate (and just about everything else, too).  I can't wait to get back to Kabanga and see them - and bring them some chalk!

Meet Elizabeth. Hopefully, she'll be Dr. Msacky someday.

This is a picture of Elizabeth Msacky, a 19 year-old student at the Mukidoma School near Moshi.   Asante Mariamu sponsored five students with albinism at the Mukidoma School last year, and I was looking forward to seeing the facility.  After we met with school officials, we went to see a classroom.  The kids were invited to ask us questions, but very few came forward.

After the question-and-answer session, our group was ushered out of the classroom, but I stayed behind to explain how to use the magnifiers I had brought for the students.  Elizabeth came up to me and asked if she could have my address.  I was delighted and said that I'd love to keep in touch.  She said, "ok, because I don't want you to forget me."  She didn't ask me for anything - not tuition, not spending money, sunscreen or books.  She simply asked me to remember her.

Special education amidst crumbling bricks

The toughest day at Kabanga was not when I toured the two special education classrooms with the crumbling brick walls and uneven floors, the hole in the roof and the torn cardboard box used as a bulletin board.  It was the next day when I realized that these classrooms were in constant use.  I looked around that first day at the lack of desks, books, pens, paper, pictures - basically everything you associate with a classroom, and my heart broke for the kids there.

But once again, I am forced to reexamine my perspective.  As my friend Diane pointed out to me, "At least these children are in school."  She's right.  Kids with special needs are marginalized all over the world, and Tanzania is no exception.   However, there are teachers at Kabanga who care, and there is a building we can fix up.  We have somewhere to start.

It all started with Mariamu...

Sometimes a person comes into your life unbidden, and nothing is ever the same again.  I didn't know when I met Mariamu Staford in November of 2009 that it was a turning point for me.  I have two children with albinism, and was very concerned about what was happening to people just like them halfway across the world in Tanzania.  Doug and I wrote letters to elected officials, donated money and were relieved that our kids were born here.

But when we heard about Mariamu's story, we felt compelled to get more involved.  Left to die in her bed almost four years ago after her arms were chopped off, Mariamu survived a seven hour drive to the nearest hospital.  While she lived, her unborn child did not.  Mariamu lost a great deal that day, but she never lost her will to live.  Her story was featured on the ABC News show 20/020, and people from all over wanted to help.  ABC News offered to fly here for treatment if she had support on the ground.  A group of us involved in the albinism community here in DC worked together to arrange for Mariamu's prosthetic arms and rehabilitation therapy, to hire a Tanzanian nurse to care for her and to generally fall in love with this beautiful and brave woman.  We realized when we said our goodbyes that we had to continue our relationship, and we decided to found Asante Mariamu.

Our organization is a little over two years old, and in that time we've done some great things for such a little group.  We've  raised awareness about what has been happening to people with albinism in East Africa through a House Resolution in Congress and with speeches, articles and social media; we've shipped thousands of tubes of sunscreen and hundreds of hats and sunglasses to people in Tanzania; we've supported a dermatology clinic in Malawi; we've created educational material in English and Swahili for people with albinism and the general population; we've sponsored the education of several students with albinism; and we've raised thousands of dollars to refurbish the Kabanga School, home to over 70 children with albinism.

All of this work is inspired by one very brave and very determined woman: Mariamu Staford.  So, we say "Asante, Mariamu."  Maybe we should have left in the comma.

Stop the pity. Unlock the hope.

It is easy to become mired in pity when addressing the huge obstacles facing people with albinism in Tanzania.  You see children with terrible sores, some abandoned by their families, and struggling in classrooms that are ill-equipped to meet their needs.  Pity is an understandable reaction, but it is ineffective and misguided.   Pity is a wall that stops us from relating to others as fellow humans.

When your immediate response is framed by pity, you separate yourself from the other person and look to an immediate solution.  Donate some money, and hope it goes well.  When you look past the pity and see the person instead, you start to think in terms of positive solutions.  This perspective also helps to create a bridge of understanding, which increases our connectedness as human beings.

I saw some very pitiful things in Tanzania last week, and felt very depressed about the prospects of many of these children.  In that frame of mind, I missed the fact that these kids are actually in school, working every day with what they have to move forward.  We must focus on moving them forward, rather than getting stuck on where they are right now.

Thanks to Mama Hope for helping me reframe my response:
http://www.mamahope.org/unlock-potential/why-stop-the-pity/

Don't give fish.

As a newcomer to the world of African development, I have a lot to learn. Practically a continent's worth. One of the best lessons I've learned so far is to stop giving people fish. It's an old parable, but it is more true now than ever in this world of rubber bracelet advocacy.

Every hat, pair of shoes and cast-off T-shirt from that 5k you ran that you send to Tanzania (while well-intentioned) takes away from someone there trying to create or sustain a cottage industry. There are important and understandable exceptions, particularly for items unavailable or too expensive for local production. But in every village we passed through, I saw markets full of shoes and donated western clothes, alongside locally made items. Tailoring is a good job in Tanzania, and it is better to support these efforts than to send our old clothes. Vocational skills will cloth someone for a lifetime.

So, we'll stop gathering hats and sun protective clothing for people with albinism in Tanzania.  Instead, we'll raise funds to purchase the items locally, which will support individual businesses and hopefully limit the number of times a Tanzanian boy will be found wearing pink "I Love Hannah Montana" t-shirt.

There is one big exception, at least for now: the Kabanga School. No one there has the money for clothes, and they all need them. So, for now, we'll keep bringing the fish. But we're working on the poles.

Death threats from the Land Officer

Planting trees is serious business in Tanzania. You are required to plant a certain number of new trees on every construction site, and we dutifully complied on Mariamu's land, under the supervision of the district land officer. We had seven small trees (called 'joholo') and were hacking out holes in the dry ground with the aforementioned Mbola woman's hoe when we noticed we had an audience. An old man and a young boy were watching us intently while their goats munched away on the thorny brush. Someone joked that the goats were just waiting for us to leave so that they could mow down the new trees. The land officer called the old man over, and pointing at the trees, he said "You see these trees? We will watch them, and if even one tree dies - you will die, too." The man nodded seriously and walked back over to his goats. All of this transpired in Kiswahili, so I was clueless until we got back in the land rover and the team translated for me, with lots of laughter.

I felt kind of bad for the goat herd - there's a drought in the area - and I can imagine him worrying about the trees and his own fate. Luckily, the land officer arranged for a local worker to water the trees. I hope someone tells the goat herd......
Pictured above: Young goat herd; land officer and Mariamu watching me plant a tree

In the shadow of Mount Kilimanjaro

I had an amazing day, and wish I could post pictures.  We visited the land where Mariamu's house will be built, and planted several trees. We had to borrow a hoe from a Mbola woman who was working two fields away...it was crazy. She said she had never seen a 'mzungu' before. Mariamu's land is on a plain in between Mount Meru and Mount Kilimanjaro, it is wild and open and beautiful. There are no houses here, but in one year, there should be a small town. Afer we planted the trees, we sang and danced in the sunshine. It was moving and beautiful.

Mariamu and I decided to climb Mount Kilimanjaro in four years.....anyone want to join us? ;-)

I also met with the doctors from the dermatology clinic, and am hoping we can work together... They also gave me enough bucket hats for the kids at Kabanga, and would have given me sunscreen, but I had no room.

Off to Kabanga tomorrow, where our toughest work will be. I will probably not be able to post from there, so I will sign off with love from Tanzania.
Lala salama,
Susan.

Day Two: Sad smiles

Our second day was spent visiting the Mukidoma School, a private school with over 400 students, 64 of whom have albinism. The children seem well cared for, but they were so withdrawn and sad that it broke my heart. They smiled reluctantly, and when they did, it was without joy. Only when some of the boys began to sing did the children warm up. Afterwards, a nineteen year old girl named Elizabeth came up to me and asked for my address. She wants to be a dermatologist someday, and wants to write to me so that I wouldn't forget her. As if.

St. Patrick's Day in Kilimanjaro

I celebrated St. Patrick's Day with chicken masala and Tusker beer in Moshi, Kilimanjaro. It's a small world.

Today we head to the Mukidoma School to visit 5 students that we sponsor.... And hopefully, my luggage will arrive!

A wonderful first day.....

I traveled with the Under the Same Sun team today to visit with Mariamu. It was amazing to catch up with her and see her progress. When we arrived, she was working on the computer at the school, as she has decided to learn it before graduating in November. That is the kind of amazing spirit she displays.
She has a good life at the school, and her son Nio is flourishing. He was very shy when we met, but I put that down to my strange appearance and funny hair.

Her is a picture of Mariamu working at the knitting machines:

One more quick goodbye...

This is the trip of a lifetime for me, and I wouldn't be going with the inspiration of Mariamu and my children, the help from my friends and family, and the love and support from my wonderful husband.  Lots of love to you all, and I leave with a grateful heart.

Here is a snap of Katy making English-Swahili flashcards for the kids at Kabanga...

Last Minute Gifts

So, I am literally hours away from getting on a plane when the principal at my daughter's elementary school asks me if I want to take an iPad with me to capture the trip.... !!!!  I was able to video a greeting from Katy's class to the students at Kabanga....priceless.

Twenty minutes ago, while shoving even more aspirin into my luggage, there's a knock on the door.  Seven boxes from the Texas Lion's Club, with 100 magnifiers for the visually impaired students!!!!
Now I have to take another seven pounds out of my luggage.... I can just wash my clothes over and over, right?

If these are karmic signals about how the trip is going to go, I think it's going to be amazing.

Leaving home.....

I leave for Tanzania tomorrow.  I visited the Embassy yesterday to pick up my visa - and I felt like a kid at Christmas.  Never mind that this Christmas features malaria pills, water filters and mosquito netting - I couldn't be more excited.

My bags are packed: three pounds of clothing for me and 97 pounds of hats, sunglasses, school supplies, cotton balls, bandages, sunscreen, pens, pencils, papers - and an English/Swahili dictionary.  I can't wait to get to the Kabanga School!