Tag: NOAH

International Albinism Awareness Day

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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.

The four of us sharing a laugh in Hawaii. My husband and I and our two children are albinos. We all have the genetic condition albinism.

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.

A Tanzanian woman who lost her right arm to attackers that wanted to sell it to witch doctors.
Image courtesy of Under the Same Sun

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.

A Tanzanian Toddler already showing signs of severe skin damage from the sun
Image Courtesy of Asante Mariamu

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.

Lee Laughlin with her children Timmy 11 and Trisha 15

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

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2012 NOAH Conference

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Author’s Note: This post is rather specific in nature, it is intended to provide information and support for people attending The NOAH conference in St. Louis July 12-15, 2012. NOAH is a national non-profit that provides information and support for people with albinism (albinos) and their families. Members and interested professionals gather every two years to learn the latest information and share experiences. Over 800 people are expected to gather in St. Louis next week. What follows is my personal perspective and does not necessarily represent the policies or perspectives of NOAH or it’s leadership. I hope it is helpful.

Breakfast at the NOAH conference in Washington, D.C. in 2010 almost 1000 people gathered to learn more about albinismNOAH’s 2012 Conference is just days away. I’ve been to every NOAH conference and still, I get excited every time I read the schedule and pre-conference materials. Attending a NOAH conference is like attending a family reunion with people you’ve never met. Despite the fact that most the people in attendance are strangers, everything and everyone are very familiar. It can be overwhelming. Overwhelming in a good way, seriously when have you ever seen so many people that look like you in one place? Overwhelming in a more challenging way; wait, which shirt is my kid wearing? Overwhelming in terms of the amount of information shared both actively (in the sessions and in the conversations with other attendees) and passively (by observation of all that goes on around you).

To minimize information overload, take a look at the schedule at-a-glance in advance and make some general notes about which sessions appeal to you. Upon arrival, you’ll be given a conference program with full descriptions of each session and you can refine your choices from there. Don’t be afraid to take a break to catch your breath and process what you’ve heard. Not all learning goes on in the sessions. While the they are chock full of useful information. Some of the most powerful experiences happen in the halls between sessions or at discussions around the lunch table.

Be prepared for an emotional roller coaster. You’re only human if you experience anxiety going into a new situation. Be patient with yourself it will pass as you grow more familiar with the hotel and the conference space and as you meet other attendees in the same boat. There is a map of the conference space online. Take a moment to print it out and familiarize yourself with it.

Conference highs come as you share experiences with others and reinforce that you are not alone. There is a thrill that comes from learning new information and maybe finding a solution to a nagging problem. There’s fear and frustration as you hear tales of the challenges that some people face dealing with schools and employers. The albinism community is diverse as the population of the U.S. Not everyone deals with challenges in the same way. Not everyone is in the same place on the journey towards albinism acceptance. Try to keep an open mind and respect the differences as much as you appreciate the similarities. Keep the information that is useful to your situation and disregard the rest.

A group of kids with albinism on the floor in fromt of the projection screens at the 2010 NOAH Conference.This is going to sound obvious, but remember that most of us can’t see well. You and I hit it off on Friday, but when I see you again on Saturday, you’re wearing a different shirt. I’m not sure if you are the same fantastic person I spoke with before and I am leery of making a fool of myself until I’ve invaded your personal space to read your name tag. <grin>

Now, a few thoughts on how the conference is run. I’ve attended every NOAH conference. I’ve was local conference coordinator in Boston in 2000 and National conference chair for the following three conferences (Concord, CA, Atlanta, GA and Minneapolis, MN). Have you ever seen the carnival act where the performer is spinning plates balanced on the tops of long polls? Running a NOAH conference is JUST like that. Unlike a corporate conference, registration fees do not cover the costs of executing the conference. A conference for over 800 people is now managed by two staffers and as always, executed with the help of a horde of volunteers. It is worth noting that neither staffer works full-time for NOAH and the conference doesn’t even account for 1/4 of their job responsibilities, although I can assure you, that some days it feels like the conference is 110% of their job. Where conference planning is concerned the focus is on providing a top-notch, safe, educational and enjoyable experience for the minimum amount of money.

When you read hotel banquet services menus, they always list the price of an item and then ++. That means plus service fee, (fee charged by the hotel to cover the cost of staffing, and facilities, typically 18-20%) AND plus local and state taxes (anywhere from 5-20%). It is the ++ that drives the cost of a cup of coffee from $3.50 to over $5 and when you multiply that $5 by two-thirds (not everyone drinks coffee) of the adult attendees at this conference you are rapidly approaching $2,000 just for morning coffee! When you consider that the cost of dinner typically STARTS at $14.95++ for chicken caesar salad (no beverages, no desserts), I hope you can understand that most non-profits including NOAH, prefer to spend money in ways that better serve their members.

When thinking about the programs offered or how things are run, please remember that these are volunteers giving up their own personal time to educate and enrich the albinism community. Before you complain think about how much time you have to work on a conference?

Now, for some practical tips:

  • Wear layers. Hotel temperatures are NOTORIOUSLY fickle. One room might be a deep freeze while another feels like a sauna. Having a sweater or a light jacket will improve your conference experience.
  • Bring your favorite data collection device. Doesn’t matter if you are old school (pen and paper) or high tech (iPad and wireless keyboard), have something with you to capture information. There will be a lot of it.
  • Bring your favorite data sharing device. You’re going to meet a lot of people some of whom you’ll want to stay in touch with. Bring business cards, Post-It® notes, or your phone. So you can give your contact information to others.
  • Always allow yourself extra time to get to and from conference sessions. Elevators can be a bottleneck (they are also a great place to meet people). Until we develop effective transporter beams, it is better to add 10 minutes to your planned departure time to insure you arrive on-time.

A-Man & I the night before our wedding.I have special memories from every NOAH conference. At the first national conference in Minneapolis, the teen discussion group ran so long we had to relocate to another room twice because no one wanted the discussion to end. In Chicago ’92, the young adults took over a helicopter pad. In Philadelphia I reconnected with the man who would become my husband. There is always at least one memorable elevator experience. It Atlanta, my four year old daughter met another little girl who had “alvinism”, just like her. Despite having been to every NOAH conference since she was born, that was the first time she made the connection. In D.C. in 2010, my son found his own “posse”. No doubt about it, NOAH conferences are magical. I can’t wait to see you all in St. Louis.