By: Kimberly Avila M.A., COMS

Published by Albinism Insight (c) 2010

The moment I met Mariamu Staford, I knew she survived the brutal attack on her for a reason.  I am humbled and still tremble every time I think of her short visit to the United States in December 2009 that will have significant impact on the crisis in Tanzania and the tragic mutilation and murdering of people with albinism in East Africa. 

Mariamu Staford is a mother, a vocalist, a gentle, kind and caring person and she just so happens to have albinism.  Since 2007, people with albinism in East Africa have been the victims of vicious attacks which most often result in death.  Their body parts are amputated and sold to witch doctors for profit.  Mariamu is one of only a couple survivors of these horrendous attacks; however, both of her arms were amputated with a machete while she was still conscious. 

I first learned of Mariamu in early October, 2009.  The ABC News program 20/20 featured Mariamu in their story documenting the tragic killings of people with albinism in Tanzania.  People with albinism lack pigment in the hair, skin and eyes, which also results in a visual impairment.  I have served as a teacher of students with visual impairments for several years and now teach at the graduate level preparing future teachers of students with visual impairments.  After the 20/20 feature aired, my email and phone mail were full with messages from graduate students who were desperate to learn how they can help Mariamu and the situation in Tanzania.  They had learned about albinism and some have worked with children who are visually impaired due to this condition, so the story made a profound statement on all of us.  Typically, I have a plethora of resources to offer my students, but this time I was speechless.  There were very few options to share to assist with this situation. 

A few weeks later, I learned Mariamu would be traveling to Fairfax Virginia to receive prosthetic arms and physical therapy.  Coincidently, she would be just a few miles from the University I teach from.  I hesitated when I inquired if Mariamu would be willing to speak to one of my classes, as I knew her trip was short and there was very little time to arrange a visit.  However, Mariamu agreed to talk to my class about being a person with albinism in Tanzania and the ongoing crisis. 

I did not know what to expect as I waited for Mariamu to arrive at my class.  However, she greeted me with the brightest smile and warmest embrace.  My students and I listened with intensity to Mariamu’s story.  After the class, we were in complete shock.  We learned more details of the tragedies in Tanzania which are far more disturbing than previously understood. 

The next day I was still having a hard time coping with the information I heard the night before and tried to get my mind off of the matter by going to a holiday party at a local church.  However, once I arrived, I learned it was an international Christmas celebration and as I sat and listened to beautiful music from around the world, a group from Tanzania took the stage and sang carols in Swahili.  I tried very hard to fight back tears as I thought of Mariamu and that is when I knew I had to take further action to aid in stopping these unbelievable attacks.  

I previously worked for a U.S. Senator in Washington DC and have served as a congressional advocate for over 13 years for disability related issues.  I knew this matter needed to be brought to the attention of congress.  However, I initially hesitated as most of our efforts on The Hill are not successful and health care legislation was occupying the attention of congress.  I knew the chances of getting an appointment with a congressional representative were slim, but I knew I had to try.  Recalling my days from working on The Hill, I knew our only chance of getting a solid response from congress was to have Mariamu present at the meeting, but she was scheduled to leave in just a few days.  I sent a request to my Congressman, Gerry Connolly, for an emergency meeting and prayed my inquiry would stand out of the 15,000 other constituent correspondences his office receives each week.

The very next day, an aid contacted me and scheduled a meeting with Congressman Connolly the day before Mariamu had to leave.  Mariamu, myself and several other individuals working on this cause attended the meeting with Congressman Connolly.  He vowed to take action and on January 13, 2010 Congressman Connolly passionately spoke on the House floor as he introduced a joint resolution condemning the attacks on people with albinism and calling for action.  In the many years I have advocated for disability related issues and after previously working on The Hill, I have never experienced such a significant and rapid response like this before. 

As I said goodbye to Mariamu when she left Congressman Connolly’s office that night in December, she and I both had tears streaming from our eyes.  I told her she is making a difference and she is here and survived for a reason. 

 

All images are (c) 2009, are the property of Kimberly Avila and may not be used or duplicated under any circumstances without written permission.

Me and Mariamu

Mariamu and group 3Mariamu and Congressman ConnollyCongressman and groupMariamu

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