I wrote this article and it originally ran in the Concord Monitor Friday June 13, 2015. It is reprinted here with permission.
My daughter is reviewing brochures for educational travel programs. “Sooooo I’m guessing Tanzania is out.” I look up at her and give her the “look”. She’s sitting across the room from me so I know she doesn’t see my face. Not because she’s not looking, but because like me, she has a hard time seeing details like facial expressions at distance. “Sure honey, you can go to Tanzania if you have a death wish or can spare a few body parts.” I wish I were joking.
Like their father and me, my children have albinism. Since the records started being kept in 2000, more than 147 people with albinism have been murdered primarily in countries in eastern Africa; and there have been another 229 acts of violence including mutilations, grave desecrations and kidnappings. These figures are as of June 3, 2015 and are compiled by Under the Same Sun, a Canadian charity focused on ending the atrocities and bringing basic human rights to all people with albinism. In Tanzania and other East African countries, people with albinism are hunted and their limbs hacked off and sold to witch doctors for inclusion in potions that are said to have magical powers and will promote prosperity and wellness. So no, my daughter will not be going to Tanzania, or anywhere in East Africa for that matter.
Albinism is a genetic condition. It causes a lack of pigment in the skin, hair and eyes. Most people are more familiar with the term albino but some in the albinism community find that label offensive. Albinism affects all races. In the Western world, albinism typically affects 1 in 20,000 people. In Africa that number is anywhere from 1 in 2,000 to 1 in 400. People with albinism are born with decreased pigment in their skin, hair and eyes (oculocutaneous albinism OCA) or just the eyes (ocular albinism OA). People with albinism, or PWA’s as we commonly refer to ourselves, have light colored hair and are fair skinned, and we also have varying levels of decreased visual acuity. A large majority of PWA’s are considered legally blind, which means that their best corrected vision is 20/200. That doesn’t mean we’re totally blind, but small print and things at a distance are hard to see. We have nystagmus which is an uncontrolled motion of the eyes. Even though our eyes shake, we don’t see the world as always in motion, but it does mean our brains have to work harder to provide a stable image. PWA’s are sensitive to the sun and bright light (photophobia), so it’s not unusual to find me wearing sunglasses even on an overcast day. We also burn easily. In the U.S. we are fortunate to have easy access to sunglasses, sunblock and sun protective clothing. Also, people with albinism likely have jobs that are indoors.
In Africa, things like sunglasses, hats and sunscreen are virtually impossible to come by. According to Asante Mariamu, a U.S.-based non-profit committed to providing education and support PWAs in East Africa, most people with albinism die from skin cancer before the age of 30. Less than 2% of PWAs in Africa make it to their 40th birthday.
A lack of understanding of the genetics of albinism and prevalence of myths means PWAs in Africa are shunned and often live in fear for their lives. For example, it is believed that having unprotected sex with a woman with albinism will cure AIDS (it won’t). Another common belief is that touching a person with albinism can bring illness, bad luck or even death, because albinism is a curse brought by the gods or the dead.
People with albinism face discrimination and bullying in the U.S., but on a completely different level. There are social stigmas and challenges to becoming gainfully employed. When I was in school, I was teased and called Casper the Ghost or White Cap. There was the high school physics teacher who used to like to yank open the shades so that the sun would shine right in my eyes. Then there was the prospective employer who upon discovering I might need accommodations (a larger computer monitor), altered the job description so I was ineligible. When I was alone, I felt very alone in my struggles.
I finally met another person with albinism when I was in the 8th grade and researching albinism for a health report. Jan Knuth was a social worker in Philadelphia. When I watched Jan, I was able to step outside of myself and see myself as others did. She squinted in the light and when she read things, it she brought them right up to her nose. I did those things too, but never gave much thought as to how those behaviors might look to others. In so many ways, that meeting changed my life forever. As a direct result of our meeting, Jan and I and six others, including my mom and my step-dad, founded NOAH, the National Organization for Albinism and Hypopigmentation (www.albinism.org), a non-profit that provides information and support for people with albinism and their families. 33 years later, NOAH is thriving and considered one of the leading resources for people with albinism.
Through my work with NOAH, I’ve met many other people like me and formed lasting relationships, including one with a special man. Pat Laughlin was an early member of NOAH’s board of directors. Sometimes she’d bring her son Tim to board meetings and we’d hang out and were just friends. In 1994 the NOAH national conference returned to Philadelphia and attracted more than 400 attendees. At that event, Tim and I saw each other for the first time in a few years and the rest, as they say, is history. We were married two years later.
We talked early on about wanting children and the likelihood that they would have albinism. It was thought that Tim and I had the same type of albinism. which means that, we only had defective genes to pass on so there was a 100% chance our children would be affected. We proved the theory in 2000 with the birth of our daughter and again in 2004 with our son. We were very fortunate to have very supportive families. We were raised to live to the best of our abilities and not to use albinism as a crutch. We were encouraged to ask for help when we needed it, but to seek and find our own limits. We were college educated and self-supporting. We figured we’d be in a good place to support kids with albinism. We already had shades on the windows, an ever-growing collection of hats and gobs of life experience.
Because of the support I’ve had, I view albinism as an inconvenience. Not everyone is that lucky. Some parents can’t handle a child with differences. The children are raised to believe that they are victims of their albinism and I personally find this hard to stomach, especially in light of the conditions that PWAs in Tanzania are born into. Albinism is a challenge, but to me, in the bigger picture, it is an aggravation.
The first reports of people with albinism being attacked in Tanzania came in 2008. On June 13, 2013, the United Nations adopted its first ever resolution expressing concern at the attacks and the “widespread discrimination, stigma and social exclusion suffered by persons with albinism.”
In 2014, surrounded by representatives from albinism support organizations around the world, the United Nations declared June 13th International Albinism Awareness Day. The day is set aside to raise awareness of albinism and encourage increased human rights for people with albinism the world over.
2015 is the first International Albinism Awareness Day and groups around the world have scheduled events and educational opportunities. Today, I tip my hat and raise a bottle of sun screen to honor my fellow albinism advocates who have worked so hard to shed light on the atrocities and bring equality and basic human rights to people around the world.
For more information about please visit these websites:
International Albinism Day www.albinismday.com
The National Organization for Albinism and Hypopigmentation (NOAH) www.albinism.org
Under the Same Sun (UTSS) www.underthesamesun.com
Asante Marimu www.asante-mariamu.org
United Nations Website on Albinism albinism.ohchr.org