Author Archives: admin

Albinism awareness event in Tanzania: both a hidden child and a witch doctor attend

News from Doug has been sporadic, but our partners on the ground have been filling us in on the trip so far.  One of the most meaningful things to come out of our first awareness event in Kibondo was that a father who has been hiding his son since his birth finally felt safe enough to bring him out in public.  The boy is 3 years old, and has never been into the village.  The dad learned about albinism, and how to care for his son; and the little boy received his first hat, sunscreen and pair of sunglassses.

Doug met another father who has been hiding is 30 year-old daughter for 6 years – from when the killings began.  He does not think it is safe to bring his daughter out in public yet, but was encouraged by the event.

It was unsettling to learn afterwards that a witch doctor was in attendance – and had been invited.  However, one of the realities we accept is that witch doctors are integral to Tanzanian society, and we are better off educating them than fearing or shunning them.  When I asked if the witch doctor’s opinion about albinism had changed, I was told that it had, and that he feels differently now.  Apparently, he even suggested that we invite all of the witch doctors in the region to the event in 2014.

I’m not sure about going that far, but I think we are taking steps in the right direction.

Our event was attended by almost 600 people, including numerous local dignitaries and journalists. The ability to spread awareness about albinism to so many people far surpassed our expectations, and we are indebted to Reverend Bartholomew Segu for organizing the event.   However, the most significant impact of our time in Kibondo will always be that a 3 year old child went to his village for the first time.

An Abundance of Supplies and Karma

I thought I would have some time to unwind and relax after sending Doug off to Tanzania, but nothing could be further than the truth.  It’s been a bit of a crazy week, but I am grateful for the abundance of supplies and opportunities:

We packed and repacked for days; and in the end, Doug and our team took 350 pairs of sunglasses, 280 low-vision devices, 280 Asante-orange hats, thousands of posters and pamphlets, 4 resource books to help new albinism advocacy groups — and lots of good wishes.

Two days later, we had a fantastic last minute opportunity to ship supplies to Kenya with friends who are moving there for a new job.  Thanks to Michelle and Chris, we were able to send 500 pairs of sunglasses, 280 long-sleeve shirts; and hundreds of low-vision devices, including 312 hand-held magnifiers, 20 monoculars, 160 cylinder magnifiers, 43 large magnifiers and 23 stand magnifiers.  I can’t imagine how many single suitcases it would have taken us to get all of that material to East Africa!

Also, we were able to meet Tara Sullivan, author of Golden Boy – a new coming-of-age novel about a 13 year old boy with albinism in Tanzania.  Tara is appearing at One More Page Books in Arlington on Tuesday, and we were lucky to get to pepper her with questions and get a preview of her presentation.  Please come if you are able, or order her book from OMP.  It’s a great story.

To end the week, I had a meeting with Arlington Academy of Hope, an NGO that works in Uganda.  We were discussing the huge success of our Rafiki Pack program, and ways to expand it. They invited us to travel with them to Uganda to develop an albinism awareness program there!

And finally, bringing it all full circle, I received an email from Mariamu.  She is doing well, and is so excited that our work is continuing in her name.  Telling her about what Doug is working on this week in Tanzania, and how we are expanding into Kenya and Uganda was a powerful testament to her inspiration.  All in all, it’s been a good week.  Stay tuned for updates from Doug, and thanks for the support.

The beginning of an adventure…

I have been trying to write the next trip update, but have been stymied on how to start.  Well, it just hit me.

I’ve been fortunate to talk to Doug several times via FaceTime, and he’s had some unforgettable experiences already.  From having to convince the Customs Agent in Dar es Salaam that the Minister of Health did not need to personally certify that the 300 pairs of sunglasses he brought were safe to use as medical devices — to being woken up at 3am by an elephant eating palm fruit outside of his tent — it’s already been an adventure.

Last night, he met with the leaders of the Tanzanian Albino Society and shared our new resource book for people with albinism, and agreed on ways to move forward in partnership.  He’ll be traveling with others from TAS in the next two weeks in three different rural areas, leading awareness and advocacy events, and distributing all of the donated supplies to hundred of people with albinism.

I just received an email from our friend Reverend Bartholomew, and Doug and the team has arrived safely in Kibondo, and tomorrow is the first official event.  We are very excited and grateful for all the support we are receiving on the ground from our partners in Tanzania, and from our friends at home.  Asante sana!

Tanzania 2.0: Bittersweet

Doug left for Tanzania last night, full of plans and good intentions.  He is still in the air – somewhere over Africa. I envy the anticipation and the imminence of his experience. It is a bittersweet thing, to send him off.
Every plan is still possible. He hasn’t run into any roadblocks – cultural or literal.  He hasn’t missed a chance or made a misstep. Not that he will, mind you; it’s just the perfection of possibility.
Also, he hasn’t had his heart broken yet.  He hasn’t had to confront how dire the situation is for African children with albinism.  He hasn’t had to walk away from a child that needs so much more than a hat and sunglasses. 
I also envy his “first time in Africa” experience.  Friends of mine who work in Africa will roll their eyes at how this sounds, but there really is nothing – nowhere – like Africa.  I know he will love it, and will soak up every part of it without reservation or judgment.
He is carrying part of me with him – literally.  He took a small portion of my mother’s ashes with him to sprinkle somewhere in Tanzania. Partly because she was the first person to support Asante Mariamu, and partly because she would have loved to have gone herself.  In her place is another early Asante Mariamu supporter and volunteer named Sharon Turtoro, who was my mother’s best friend.  Sharon nursed my mom all last summer, and was there when I couldn’t be.  I am glad she is with Doug now.
I will provide updates as I get them, and more details in the days to come.  Our deepest thanks to everyone who has donated time, money, clothing, sunscreen and talent to make this journey possible.
Love,
Susan.

A Remarkable Story: Habo, Golden Boy

Yesterday was a special day for people with albinism in Tanzania, and it is likely that none of them know it.  No one in Tanzania has heard of Habo – but hopefully, that will soon change.  A new book debuted that sheds light on the myths that surround albinos in Tanzania, and the danger they live with every day.  Tara Sullivan is a first-time author, and with “Golden Boy,” she’s drawn a perceptive portrait of a young boy with albinism who struggles against poverty, prejudice and murderous intent to find his place in the world.  This book could bring a new awareness to the plight of people with albinism in Tanzania.

Albinos in Tanzania aren’t just shunned and discriminated against – they are hunted for their body parts to fuel a black market.  Witch doctors promote the myth that the hair, skin and limbs of people with albinism can be made into potions that bring wealth or luck.  As a result, over one hundred people with albinism have been murdered or mutilated in the last five years.  Asante Mariamu Foundation works to raise awareness about this issue, and help people with albinism in Tanzania

In “Golden Boy,” Habo lives in relative peace with his mother, sister and brother in a rural Tanzanian village, barely surviving as subsistence farmers.  When his family is forced to leave the security of his village, Habo is confronted with the ugly reality that face people with albinism all throughout Tanzania.  They are treated as curses, and viewed as a “walking paycheck” by many.  Habo realizes that he must leave the comparative security of his family to seek safety in a large city.  What happens is a coming-of-age story that weaves accepting albinism with growing up against the backdrop of gruesome myths that surround albinism in Tanzania.

The story is compelling because of the subject matter, but it is memorable because of Habo.  Like a lot of teens, he is a study in contrasts: proud, confused, afraid, brave, stubborn and perserverant – and it is gratifying to watch him take the journey into adulthood.  People with albinism in Tanzania deserve the same chance to seek peace and fulfillment, and this book might be a step in that direction by raising awareness.
Check out this review in the Wall Street Journal: http://tinyurl.com/ouksutf

Mariamu’s Graduation

Mariamu’s remarkable journey continues with her graduation with a vocational degree in commercial knitting.

Mariamu Staford, a 32 year old mother with albinism graduated with a three-year vocational training degree in commercial knitting from the Imani Vocational Training Centre in Moshi, Tanzania. Mariamu serves as our organization’s inspiration because of her grace and courage in the face of extreme adversity. Obtaining a vocational training certificate is a rare accomplishment for someone with albinism in Tanzania, but what makes Mariamu extraordinary is that she has achieved this goal without arms.

Mariamu was lost her both of her arms in a brutal attack in October of 2008, when two men attacked her with machetes. The men hoped to benefit from the myth that albino body parts can bring wealth or luck. Through her determination and great spirit, she survived the attack, traveled to the US to receive prosthetic arms, and began her pursuit of the certificate.

Mariamu has decided to pursue an advanced certificate, including computer training, and she hopes to open her own shop someday. Asante Mariamu has purchased a commercial knitting machine, and donated a computer, to help her make this dream a reality.

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.