All In A Day

Thursday, July 19, 2012

NOTE: Every now and then someone else wants to share their thoughts here. Before posting such things they are given fair warning that they are subjecting themselves to being guilty by association. All appropriate waivers were signed by this most recent guest blogger before this was posted.

Over the weekend of July 13-15 I had the incredible experience of being at the NOAH (National Organization for Albinism and Hypopigmentation) Conference in St. Louis. I am not going into details here on the condition. If you want to know more go to www.albinism.org.

Let me say that when Kris and I were married, I obviously knew she has albinism. I also knew that she had a great deal of strength, courage, and ability. Albinism had not kept her from doing most of the things she had set out to do. Though she could not drive, it was her own decision, based on a concern of the potential dangers into which her vision might lead her. (Hell, I see pretty well and driving in Dallas scares the poop out of me). I have come to learn that she has some self doubts brought by the way others have perceived her because of her albinism. Because I love her as much as I do, I try to encourage her, because I know what a load of horse dump all that insecurity really is.

These thoughts are about the conference; my first, and certainly not my last. At its simplest the conference occurs every two years and provides an opportunity for persons with albinism to network and learn about services and programs. There is a large component of the conference for those of us "pigmentos" who love and support persons with albinism. Much of that is for parents; and there were lots of children of all ages at the conference. The conference organizers provide lots of activities that give those kids a chance to learn, grow, play and spend time with other children with albinism. These activities also give the parents a break. Good plan.

Those of us who were new had little pink First Time Attendee ribbons to attach to our name badges. One of the things NOAH stands for is not stigmatizing people and these name badges were not a warning to the more experienced attendees to avoid us. (you know, like Seniors avoid Freshmen). They were instead a sign that we were new, probably overwhelmed, and to be welcomed.

And welcomed we were. In fact one of the first people we met was Chloe. Chloe, all of three years old, saw us, broke away from her mother, came over and announced "I'm Chloe. Who are you?" and took hold of our name tags, pulled them close and read our names to us before we could respond and told us it was nice to meet us. Now that good readers, is a welcome.

The sessions I attended were very good. As a teacher I was able to get a better grip on the 504 program (if you don't know what that is don't worry - those of us who deal with it are not too clear). I was able to learn just what it is that people with albinism can see. All people with albinism have some degree of vision loss. It is not simple nearsightedness. Want to know more? Go to http://www.youtube.com/watch?v=uJ6EX4uphUg&sns=em . I learned about how iPads can be used to help those with vision issues in school from a mother/college professor who has a son with albinism. I saw all types of cool technology to assist people with vision loss, I discovered programs that are helping persons with albinism in Africa where horrible atrocities are committed against people with albinism. (http://www.underthesamesunand http://www.Asante-Mariamu.org).

All the sessions were valuable to me and I am sure valuable to others who attended. But in my opinion the most valuable part of the conference was meeting people and seeing all of us dealing with each other as people; all with common interest; and yet just people. Because albinism is not too common (about 1 in 17,000) some of the people with albinism and many of the parents of children with albinism had never met another person with albinism. After one days session several of us headed out to a local watering hole where one young lady in her thirties could not contain her joy at meeting other persons with albinism for the first time.

We met (and seemed to spend most of our off time with) a contingent of Canadians with whom we will keep in touch and see again in two years at the next conference. Thank you Stephen for your jokes and humor and to Tricia (his sister) for keeping him reigned in - somewhat. Thank you Cindy and Scott for treating us like we were not newbies and letting us do a little helping. (NOAH wisely prefers first timers not "work" at the conference but rather wants them to just participate as attendees.This is against my nature but Cindy found something for me to do, suited to my talents.

A short tale about the gorilla you see pictured above. as I was carrying him off to the storage room a young man of about 4 came up and the following conversation ensued:

Young man: "Why does the gorilla have white hair?"
Me: (being teacherlike and not wanting to just give an answer): "Well, why you are here in St. Louis?"
Young man: "To come to the Noah conference!" (pause.....) "OH THAT'S why the gorilla has white hair!!!"

Score one for the teacher.

Besides the Canadians, there was Frank from New York and Frank from California, Tom, William and his guide dog Elliott, Heidi, all the people with whom we shared a meal at lunch, Rick Guidiotti the fashion photographer (http://www.positiveexposure.org/) and of course Chloe.

Great people with whom it was my pleasure and honor to spend time.

By the way, you may have noticed that throughout I have used the term "person with albinism" or something similar. One of the things I Iearned at the conference is that the term "albino" has been used so perjoratively that many in the albinism community find it offensive even though it is indeed the proper scientific term. NOAH suggests the terms "people or persons with albinism" and "children with albinism" so that people come first and albinism second. And that is how it should be with everyone at all times. People first.

But I won't mind if you call me a "pigmento".

- Weber

Wednesday, July 18, 2012

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.