Visual Cents No. 65

"Did You Say Cheese?"

NOAH and Me

We have been in St. Louis for the NOAH (National Organization for Albinism and Hypo-pigmentation) conference.  Though I am fifty years old and NOAH has been around since 1982, I was a first-timer at this conference.  I wasn't sure what to expect, but I knew that I wanted to go.  Weber was a really good sport and agreed to go with me.

The primary purpose of the NOAH conference is to provide information and support for families and individuals whose lives are impacted by albinism and it's accompanying vision issues.  There were adults with albinism ranging in age from their twenties to their seventies, children with albinism from only a few months old through their teens, parents, grandparents, siblings and spouses.  It was a wonderful multi-generational gathering of people from 44 states and nine countries all coming together to share information, offer support and have fun with one another.

I attended sessions about relieving the neck and back pain that result from hunching over books to get close enough to see them, make-up techniques that work with the complexion of albinism, hobbies and low vision, and a presentation by photographer Rick Guidotti of Positive Exposure.  I learned a lot, but more importantly it was nice to be in a group where everyone was "in the same boat.". 

Much information was shared outside the sessions as well.  Those of us who were willing "to answer questions about almost anything" wore red, white and blue leis throughout the weekend.  These were a sign that people could safely stop us at any moment to ask questions and we would do our best to give them an answer.  During the weekend I was asked about my job, whether or not I drove, if I had children and if they had albinism, how I dealt with people staring and pointing, if I was teased, what accommodations i had had in school, and what was the rudest thing that had ever been said to me.  I was blessed to have the opportunity be a positive example for parents and teens who are so uncertain of their children's and their own futures.

Like I said, the formal sessions were a great source of information, but I have to admit that I probably enjoyed my free time even more.  Though I knew exactly one person from NOAH when I left Dallas last Thursday, I came back with a whole slew of new friends, friends I feel like I have known forever.  Interestingly, many of them are from Canada.  I finally found a group of friends who don't think I say the word "about" strangely.  Seriously, one of the women I met could have been the twin from whom I was separated at birth; we shared so many things - a love for fiber art, a commitment to Weight Watchers, in second marriages, strong willed and self-sufficient, and we both despise mushrooms.  When she I met, one big difference between us was that I like beer and she didn't.  By the end of the conference that had changed.  We all went to tour the Anheuser Busch plant in St. Louis.  After the tour they give everyone two free beers.  With all the choices, we managed to find one that Cindy liked!  Who knew there was such a thing as blueberry beer!

Weber and I spent every night during the conference out on the town with our new found friends, managing to close four bars in three nights.  The good thing about five legally blind people out drinking is that we didn't have to appoint a designated driver.  Weber was the only fully sighted one amongst us.  We taught him the freedom of walking; he usually can't drink because he is the designated driver.  This was a win-win situation!  We all had an awesomely fun time together.  And the looks our group got from the people on the streets.… It was hard to say good-bye when it was time for us to part.  It will likely be two years before we see each other again at the next NOAH conference, which is going to be held in San Diego.

At one point during the while we were gone, Erin texted and asked how the weekend was going.  My response to her was that it was great but hilarious.  Weber could not find me in the crowd.  (You know that all people with albinism look alike, right?:-)) He is so used to finding me by my hair that in a crowd of lots of white-haired people he was lost.  Erin laughed and said that Weber's bald head was probably easier to spot in this crowd than my signature hair.  She was correct.  This gave Weber a sense of what finding him in a crowd is like for me on almost any day.  Object lessons are often the best!

Stay tuned here for Weber's own account of his experience at the NOAH conference.