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!

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.

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.

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.