July's Five Fabulous Finds

Chooze Shoes

A few weeks ago we were wandering around REI.  My attention was drawn to a rack of what turned out to be brightly colored children’s shoes.  These canvas shoes came in lots of multi-colored patterns.  As I looked more closely, I realized that the right and left shoes did not absolutely match each other in pattern; they complimented one another - very nicely.  I stood there looking through all of the choices secretly wishing that they came in adult sizes.  While enjoying the kaleidoscope of colors before me,  I remembered a comment by composer Igor Stravinsky when he said, “To be perfectly symmetrical is to be perfectly dead.”  Who is it that decided that our shoes had to match each other anyway?

When I got home I decided to google Chooze Shoes just to see what they were all about.  The company’s mission is to create shoes that allow children to embrace and celebrate their uniqueness and their differences.  They also strive to make this world we share a better place for all of us.  Part of the Chooze Shoes mission is to teach children about the importance of caring for our environment.  The shoes are made from vegan friendly materials and they come in “art boxes” rather than shoe boxes.  These boxes are constructed from recycled materials and they provide the shoe recipients the opportunity to color their own box.  At the end of each year Chooze Shoes also invest its profits in various anti-poverty programs.

And best of all, they do come in adult sizes!  REI does not carry them but they can be ordered online here.

I have not ordered any yet because I can’t decide which ones I want.

“To live is to choose.  But to choose well, you must know who you are and what you stand for, where you want to go and why you want to go there.”  - Kofi Annan

Rick Guidotti

I have been reading about Rick Guidotti and his organization Positive Exposure for several years.  Rick began his career as a New York fashion photographer, taking glamorous photos of top models for the top fashion magazines all over the world.  One day after finishing one of these shoots he was walking down the street in New York City where he spotted a young girl with albinism waiting for the bus.  He says that he was instantly struck with her beauty, a different beauty from the models he regularly photographed but none the less beautiful.  He wanted to take her picture.  It didn’t work out that day, but Rick perservered.  He has now turned the focus of his career as a photographer to capturing images of people with all kinds of genetic differences from all over the world.  His work is absolutely amazing.  

Not only is his work amazing, but he too is an amazing person.  I was blessed to meet him and have his undivided attention for a conversation while we were at the NOAH conference.  We talked about albinism, photography, cameras, Texas, and probably a few other things that I now can’t remember.  For me, talking to him gave me the same thrill that a young athlete gets from meeting his or her favorite superstar.  He even offered to put a link to my blog on his Facebook page.  I have not taken him up on that offer though I do believe he was absolutely serious iwhen he made it.

Here is a link to Rick giving a TED lecture.  The fifteen minutes it takes to watch this are time well spent, I promise.  You can also read more about him and Positive Exposure on their website.  

Gifted Hands: The Ben Carson Story

Neither Weber nor I are big movie buffs, but we both enjoy a good movie every now and then.  Though we toy around often with going to the theater to see a current movie, that has not happened yet this summer.  On a hot Sunday afternoon not too long ago, we had intentions of going to see The Exotic Marigold Hotel at the theater.  As it got later in the day and the thermometer outside rose above a hundred degrees, we ditched the plans for our excursion to the theater and opted to stay home and instead watch something on Netflix.

Because we are not movie buffs, we are often at a loss for what there is to watch much less what we most likely would enjoy watching.  In the case of this hot summer afternoon, we let Netflix make recommendations based on movies we had watched previously, settling on Gifted Hands:The Ben Carson Story, one that we had not ever heard of.

I’m not going to give the story away.  Suffice it to say that this movie based on the true life story of Dr. Ben Carson, played by Cuba Gooding, is a must see for every student, teacher, parent, brother, sister, preacher, professor, doctor, and anyone else that I may have left out.  In my humble opinion, everyone should see this movie!

If you don’t have Netflix, call me; you can come watch it at my house.  I will gladly watch it again and again and again . . .

Hummus

Though I love to cook, preparing hot meals during the summer heat loses much of its appeal.  Though from a taste perspective I could live on a diet of fresh fruits and vegetables, my body gets kind of cranky when it doesn’t get enough protein.  And protein is usually what needs to be cooked.  

Enter the bean.  I am a fan of almost any kind of bean.  Yes, they do need to be cooked, but you get more bang for your buck when you cook beans than when you cook meat.  Lately I have been cooking a pound or sometimes more of beans and freezing the cooked bean in containers comparable to the 15.8 ounce cans of beans sold at the grocery store.  I don’t season them at all at this point.  I just cook them; they are then ready to be used just like canned beans in any recipe.

Hummus has become a staple of our summer diet. It is cold, tastes great and can be eaten on pita or crackers or used as a dip with freshly cut vegetables.  Though you can buy hummus already made, I always make my own.  I’ll share my secret here - I use great northern beans rather than the traditional garbanzo beans found in “authentic” hummus.  

If you are a fan of hummus or would like to try it for the first time, here is my basic recipe.  I’ll have to confess that I don’t always measure so mine does not come out exactly the same each time, but it is always pretty darn good.

2 cans great northern beans, drained

1/2 C tahini

8-10 cloves of garlic

1/4 C lemon juice

6 Tbs. Olive oil

1 Tbs soy sauce

1 tsp salt

1 1/2 tsp ground cumin

1/2 tsp cayenne pepper

• some recipes call for coriander.  I usually don’t use it.

Place the garlic cloves in a food processor and pulse until finely chopped.  Add the rest of the ingredients and process until you have a creamy texture.  You can add water a little at a time if your hummus is too thick.

All of the seasoning can be adjusted to suit your personal taste.  Experiment.  And, enjoy!

Stella Artois

I am a fairly wimpy drinker and certainly not a beer connoisseur.  I just know what I like and know what I don’t.  Most of the time I can’t give you an intelligent reason for why I like or don’t like a particular beer.  I like Stella Artois.

It is a Belgian light lager distributed by Anheuser Busch.  Though I believe it was originally created to be a seasonal beer for the Christmas season, it is now available all year long.  It’s light, less than strong flavor and aroma make it a good choice for a hot summer evening.  It might even taste pretty good with a little hummus and pita bread.

Remember that I said that I am a wimpy drinker . . .

Visual Cents No. 78

"Summer's Harshness"

Visual Cents No. 77

"I'm Just A Spectator"

Visual Cents No. 76

"Perfect Score And Then Some, Not!"

Visual Cents No. 75

"Proudly Supporting Team USA"

Visual Cents No. 74

"TGIF"

Visual Cents No. 73

"Good Advice, Plain and Simple"

Visual Cents No. 72

"Summer Showers"

Visual Cents No. 71

"Blue On Blue"

Visual Cents No. 70

"Urban Troll Habitat"

Visual Cents No. 69

"Abridged Bridge"

Visual Cents No. 68

"Any Thoughts On 53 Down?"

Visual Cents No. 67

"Self Portrait"

Visual Cents No. 66

"Really?"

Pigmented Ponderings

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

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.

Visual Cents No. 64

"Beautiful Little Girl"

Visual Cents No. 63

"Farewell, St. Louis"

Visual Cents No. 62

"Slumber Powered"

Visual Cents No. 61

"What Are You Looking At?"

Visual Cents No. 60

"Don't Try This At Home"

Visual Cents No. 59

"Meet Me In St. Louis"

Visual Cents No. 58

"Interesting Error"

Fortuities and Nuptials

I mentioned back at that end of May that I have been reading Milan Kundera’s Te Unbearable Likeness of Being.  I have not finished the book yet.  This is not because the book is not good or that I am not enjoying it but because I have way too many things that I want to be doing and not enough time to do them all.  I will finish it before I have to renew it at the library again.  The point here is not whether or not I have completed the book, but ratherthis:

The following is a passage from the early pages of The Unbearable Likeness of Being . . .

"...is not an event in fact more significant and noteworthy the greater the number of futurities necessary to bring it about?

Chance and chance alone has a message for us.  Everything that occurs out of necessity, everything expected, repeated day in and day out, is mute.  Only chance can speak to us.  We read its message much as gypsies read the images made by coffee grounds at the bottom of a cup.”

As I ponder this passage on our second wedding anniversary, I find myself considering all of the fortuities that have brought Weber and me together.

• My parents conceived a child despite the fact that my dad was in the Navy and spent much time away from home.
• Weber’s parents conceived a child despite the fact that they had been told that they could not have children and his mother was 40 when he was born.
• I came to North Texas planning to be here for two years, long enough to get my Masters Degree.  Nearly twenty five years later, I was still here.
• Weber’s parents bought a house in Farmers Branch in 1964.  After their deaths in 1980, Weber did not sell the house and move somewhere else.
• I got a job teaching at Brookhaven College in Farmers Branch in 1992.  
• I love my job and have stayed all this time.
• Weber became a teacher and after a few years began teaching middle school in Farmers Branch.
• I learned to knit.
• Through knitting I met Weber’s ex-wife.
• Through Weber’s ex-wife, I met him.
• I went to an Episcopal church that, at the time, offered Tai Chi and Zen meditation.
• His ex-wife was interested in Tai Chi - but as it turned out not interested enough to actually go.
• Weber was interested enough to attend both Tai Chi and Zen.  
• He then began to attend church on Sunday mornings.
• Weber decided to be confirmed in the Episcopal Church.
• At the last minute, his sponsor could not be there for him at Confirmation.  His then-wife suggested to him that he ask me to be his sponsor.
• Something still unexplainable, something that left us both with tears streaming down our cheeks, happened that morning during his Confirmation.  
• His ex-wife was an Agnostic.  She did not attend church on Sunday mornings.  This became a problem for them.
• He shared his concern about this issue straining their relationship.
• I shared with him that Mike was gay.
• Weber eventually filed for divorce.
• I eventually filed for divorce.
• I was going to become a nun.
• For different reasons, we both endured a simultaneous few months of hell.
• I had a terrible experience at the hands of a mutual friend.  Another friend called Weber to literally come rescue me.
• He did.
• We both were brave enough to share our feelings for one another at this point.
• Mike was supportive of our new relationship.
• Mike got Weber and me tickets to travel to Assisi together.
• Weber’s divorce was final.
• We had an amazing spiritual experience in the Church of Saint Clare in Assisi.  (Read about it here.)
• I was not going to be a nun anymore.
• My divorce was final.
• We became engaged.
• We got permission from the Bishop to be married in the church a month shy of the required year wait after a divorce.
• We were married two years ago today surrounded by our family and friends.

Who knew back then 

that all of this was in preparation for this day, July 10, 2010,

and the life that we now have together as husband and wife.

The chapter from The Unbearable Likeness of Being with which I began this post concludes with:

"Necessity knows no magic formulae--they are all left to chance.  If a love is to be unforgettable, fortuities must immediately start fluttering down to it like birds to Francis of Assisi’s shoulder."

Did I mention that we are both tertiaries in the Society of St. Francis and that many of those who shared our wedding day with us were our Franciscan brothers and sisters?

If all of this is not enough to convince us that chance, the stars and God are on our side, this was in the paper this morning.

Visual Cents No. 57

"For Erin"

Visual Cents No. 56

"Going In Circles"

Visual Cents No. 55

"Bird's Eye View"

Visual Cents No. 54

"A Pink Rose"

Visual Cents No. 53

"Evening Sky"

Visual Cents No. 52

"Do These Feathers Make My Butt Look Big?"

"Visual Cents No. 51"

"Where ALL Are Created Equal"

Visual Cents No. 50

"Life is Full of Possibilities"

Visual Cents No. 49

"Two Fingers Are Better Than One"

Visual Cents No. 48

"Magnolia"