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

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……

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!

One of my friends posted something today that jarred me out of my carefully constructed comfort zone.  She wrote about how she used to hide her struggle with depression, but after thinking about how our society stigmatizes depression, she decided to ‘come out’.

Wow.

I thought, “Good for her, but I’m never doing that.  No one is ever going to know how many times I had to talk myself out of bed in the morning; or how many times I stood in front of my fridge with a fork, because that just sounds crazy.”

Ha.  See? I was a victim to exactly what she was trying to change.  Even I think that ‘depression’ is lame and that you should just buck-the-fuck up and get on with it.   How many people who struggle with this condition feel the same way?  How many of us are there, suffering silently because we are to embarrassed to admit that we really feel bad sometimes?  I was going to write “feel bad that we just can’t cope”, but the truth is that we do cope – every day.  Sometimes it is just harder than other days.

Sigh.  I wrote to her and thanked her for her strength and honesty – and I told her I wasn’t ready to be that strong yet.  That email was my first step at publicly claiming my depression.

This is my second.

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.

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……

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!