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.