Turning Forty

I turn 40 in exactly one month.
 
What are my plans for the back half?  I dunno.  Lemme...

I did one of those "get to know me better" thingies on facebook. One of the questions was "what did you want to be when your were little." I really couldn't remember. A lot of my friends answered "bigger." I guess now that I'm "bigger", I could stand to be a little "smaller".  I seem to remember doctor being on one of the lists when I was young. I wanted to be a teacher when I was a teen and as I started college. I still think teaching is a great thing, but I don't think I would like the "structure" of the "traditional" classroom.

A version of that question has always bothered me. "What do you want to be when you grow up?"  Well... You are assuming I WANT to "grow up".  I certainly wouldn't want to go back an re-live my youth. Being a kid was okay, but if we look back honestly, there is way too much "drama" and pain that come from the ignorance of childhood. Watching my boys go through it reminds me of just how much certain aspects of being a teen sucked. That's why so many of us "old people" say things like "If I knew then what I know now..."  Well, we didn't and because of that, some things sucked.  Our kids will say the same things when they are old.

Okay, David, you are rambling. ... Yeah.... That's how I roll. ;-) This is my rant, you don't have to read it. ... lol ...  I encourage you to do so, though.

So, I am turning FORTY.   oooooooooo that's a BIG number. It really doesn't feel that big. Is this supposed to be where I trade my family in for a newer model? Or am I supposed buy some overpriced sports-car that goes fast because my libido is now slow? ... I don't think I am made that way. Scratch that.... I KNOW I'm not made that way.

My family is AMAZING. I couldn't improve on them and wouldn't want to try. I married my BEST FRIEND. I have two great boys that are a constant source of pride. A "newer model" would be horrible.

HELLOOOOO!!!!!! I am LEGALLY BLIND!  Perhaps I would like that sports-car, but it would be a BAD IDEA. Why spend that kind of coin on something like that anyway. I'd rather spend it on travel. ... If I had it to spend.

My mid-life "crisis" seems to involve a personal evolution. I want to learn new things, do no things, and visit new places. I want to continue to grow but I don't want to "grow up." Grown ups are stiff, stagnant, and BORING. Life is supposed to be fun.

I started a new career path this year. After 22 years working directly facing customers in a retail environment, I am now working in a cube serving customers via email and phone. I have weekends off. I work a fixed schedule Monday through Friday. I am learning new things in a new place with new people.

I want to learn to play the Bagpipes. I started by visiting with the Stone Mountain Athol Highlanders last week. I plan on learning along WITH my sons. I want them to see that learning new things is a life-long thing. We can learn things because WE WANT to learn them. My oldest is going to learn to play the drums as well. So, instead of a sports-car, I will spend some coin on Practice Chanters and drum sticks. (These are practice chanters)

HMMMMMM. ...  As I read through the above, I am struck by something.

As I turn forty, I plan to stay with my family. raise my children, and improve myself.  HOLY CRAP!  I'm growing up! 

Anyone who wants to contribute to the musical education of the Family Fields is certainly encouraged to do so. My birthday wish-list is for the items needed to accomplish that end.  .... Or an I-Pad :-)

Who ever heard of "Albino Wings?"

An interesting conversation came up recently on the NOAH discussion boards.
First, a little background. NOAH is the National Organization for Albinism and Hypopigmentation. It is a national organization dedicated to education and advocacy for persons with albinism.The discussion boards are for members to discuss all manner of topics relating to life with Albinism.
A Common topic on the board is the term ALBINO. The topic comes up a lot as comics use the term within their routines. The topic comes up when anything light, or pale is given the moniker "ALBINO."
Many within the community are not comfortable with this use of the word and are offended by the term. They prefer to be called "people with albinism" rather than "Albino" because they feel the latter is used as a pejorative term much like the "N Word" is use in referring to "People of color." I can see a similar argument being made by Little People being offended by the terms "midget" or "munchkin." Both of which have been used in negative ways throughout history. While I do not always agree with this point of view as it relates to the word Albino, I do understand them and am sensitive to the subject.

Because I suffer from Ocular Albinism (OA) rather than Oculocutaneous Albinism, (OCA) I do not present the same physical traits often associated with what the general public associate with the word "Albino." I have reddish hair and blue eyes. My eyes "dance" (Nystagmus)  and I have poor vision. My skin is pale, but I don't "look Albino" as the general public would understand it. Therefore, my experience with the discrimination and isolation, others deal with, is not directly comparable. I am acutely aware of this and try to be sensitive to that fact.


So anyway... back to the question at hand.


So, a poster read an article from Canada where restaurant chain, EARLS, has "ALBINO" product on the menu. The offer an "Albino ale" and "Albino wings."
That article can be found HERE.
There are two brothers with Albinism that have taken issue with this use of the word "Albino" and asked the chain to change the menu. The chain has refused and now the debate is being played out in the media. We, on the board, were being asked our opinions. Mine is below.



...What's yours?


Okay, here we go again...
I don't understand how the word Albino can be used in the context of Wings or beer anyway. It just makes no sense. But.... I CAN SEE a way to benefit both sides of this camp in a positive way.


Q: Am I offended?


A: No.


Q: Do I agreee with the brothers? 


 A: I support their ideal of not wanting the name (term) Albino used in pop culture in a negative way. I don't like stereotypes being perpetuated.


Q: What do I think? 


A:  I think there is an opportunity to partner with Earles for the benefit of the Charity and help build positive PR for Earls at the same time.

My Idea:


*Ealrs keeps the name Albino wings, ale, frenchfries, whatever.
*They promote the product as support for the Charity. (Under the same sun)
*Portions of the proceeds from the sales of the "Albino" product are donated to the Charity. (And the product is MARKETED that way) Educational information regarding the charity and those it helps are provided along with press releases from both the Charity AND Earls.



Results?:


1. The brothers get to help the charity. (Exposure and donations)
2. A greater portion of the population can learn of the plight of those with albinism in underdeveloped countries. (Education of the public is always good)
3. Earls can lay a "legitimate" claim to naming the things Albino because it is to promote charity, education, and assistance. ... (Not ridicule and bigotry.)
4. Earls may gain some market share as those who support the efforts of the charity, and would never go to Earls BECAUSE they were offended, can now go and support the chain AND their charity at the same time.(Win-Win)
5. PR for both organizations and the positive press that goes with it.
I think in terms of marketing and I like to think that these two opposing parties might be able to work out a solution that benefits both everyone.

...What do you think?

Can my car take me where I want to go?

I read an article (I read a lot of them) about technologies that are going to make it possible for blind people to drive. There are a ton of prospects out there for this aplication, but I have a few ideas about how this might or might not ever happen in our world.

My fear is that it can never happen. Below is a part of my response to the editors of the article.


Tell me what you think


Technology can already park a car for me. Collision Radar is commonplace. GPS is nearly as ubiquitous as the cellphone. Fork Lifts "drive by wire" in most modern warehouses. So why can my care not take me where I want to go?

Well, It is more a question of sociology than technology. The short answer is that the rest of the American public will not give up control and allow their cars to decide the best path, speed, and lane in order to arrive at their destinations. Americans love the control.

The accidents on American Highways during each daily commute is the proof of their poor skill, decision making and control.

As long as people are insistant on being in the "driver's seat" they will never allow the computers in the car and the grid to decide the details of the trip. They will certainly not relinquish the controls and "leave the driving" to the car. No matter how much safer, efficient and hassle-free the trip may be.

A centralized grid with computer controls that monitor speet, trafic, and the intended destinations is possible with the tech we currently have. The practical aplication of such a system is, unfortunately I fear, a pipe dream.

What do you think?
Would you give up the control?
What would you do with the free time on your commute?

How do you tell your child...?

So a parent asked the other day, “How do you tell your child she has ocular albinism?” The question revolves around her five-year-old daughter who is just beginning to notice her, “eyes don’t work so good.”

I feel for this young mother and her struggle. I also am amazed that this has not been a part of their daily life before now.

I do not remember a time when I was not aware that of being “different.” I have worn glasses since I was about 2. I have no real recollection of my parents “breaking the news to me.”

I don’t remember hearing the words albinism or albino until I was about seven. At that time, I was enrolled in the Louisiana State School for the Blind. My first understanding of albinism was my friends with OCA.

I think children generally know they are not all the same. Raising kids in a diverse world makes this all the more obvious. Children, when young, generally don’t care if someone is “different” as long as they can play. I think that is an important lesson for adults to remember. People are people.

Exploring the world with our children reveals numerous opportunities to find “teachable moments.” Moments in which we can notice, together, the variety that exists within nearly all things.

Apples come in different sizes and colors. Some are red but many are green and even yellow. They are still all apples. People are like this too. We come in a variety of sizes and shapes. We all have things we are good at and things with which we struggle. I am good at expressing myself. I have no fear of speaking to groups. I am however not the person you would want flying your plane. ... No really, that's not in my list of strengths.




So how should this mother tell her daughter she has albinism? I don’t think it needs to be some "talk" that is scheduled in Outlook. I think it needs to come in small doses. It needs to be a natural conversation that comes while looking at the way things are different yet the same. At five, her daughter is not going to understand genetics. She will not understand the concept of being "legally blind." She will understand that her friend cannot run as fast as she can. She will understand Green apples still taste good even if they are not red.

Not being afraid to talk about any disability is important to the development of a healthy self image. I learned to deal with classmates picking on me because my family and I had no problem joking about things I didn’t see. I was always proud of my “moon tan.” I liked living in my “cave” because I used dimmer lights within my own room to reduce glare.

My parents never sat me down and said, “Son… you have a genetic condition affecting 1/20000 people globally. Presenting with little or no pigment, reduced visual acuity, and nystagmus.” They didn’t need to. They loved me. They let me explore my world in the best way I could. The supported me and picked me up when I fell. ... And I fell a lot.



I think parents of children with disabilities often have guilt with which they must first cope. They must learn that the randomness of genetic combination is part of the diverse beauty that God has designed. We all understand that God’s fingerprints are on every child. Once parents stop blaming the random combination of DNA, and accept the wonderful gift they have in a child, they can begin to enjoy that gift.



There is no legitimate shame attached to disability. Why people feel shame for something over which they have no control is a mystery to me. Others may belittle us. That is their shame … not ours.

If you have a disability of some sort, how were you "Told?"

Advice for parents dealing w/ Albinism

So I was reading a post on the NOAH website posted my a young mother who has just heard that her six-week-old son has Ocular Albinism. Confused, scared, and feeling more than a little alone, she was reaching out to the NOAH comunity for answers. Below is a rework of my post to her. I will start with a quote from her initial encounter and diagnosis.

“When we went to the eye Dr. I was told he has OA then he pretty much walked out of the room. We just left with a lot of questions and don’t remember much from that visit"

Geee.... Why would a parent feel like they were left in the dark?

This is unfortunately no as uncommon as it should be. Many of these Doctors have not seen Albinism in person since school. Even fewer have seen Ocular Albinism. (there are only about 200,000 cases of OA in the United States.)

The advice I give to any parent of a child with any vision issue is below. It's not a white-washed, fluffy view. It is the ugly and lovely reality of parenting. Feel free to comment... I always do. :)

While Albinism is not as rare as many believe, there are many Ophthalmologists who have not worked with us regularly. Worldwide, the average occurance of albinism is 1/20,000.

I still have Doctors sometimes say something like, "WOW! I remember seeing retinas like these in school!" Let me tell you first to avoid any Dr. who is like that. They are not qualified to work for you.

I have OA.  (Ocular Albinism) I will be 43 this year. Red Hair, Blue Eyes, Pale skin. I do not drive, but I ride a bike. I read "normal text". I use a computer. (I do modify the contrast settings and use filters for glare.) I don't play ball sports, but I wrestled, did Gymnastics, and ran track. I was even the School Mascott in high school.

My best friend, from school, is a Judo player and has been in Two Olympic Games as a player with Albinism. He took Gold in 2000 and Bronze in 2004. He owns his own Dojo and trains Olympic athletes. He Coached the 2012 Paralympics Judo team. - UPDATE: He is working with the 2016 US team.

The best advice I can give is to love your child and let him be a kid first. Don't ever let the doctors, counselors, or teachers tell you what he can or cannot do. Let  you child discover the limits to his/her ability. (You will be amazed just how far those limits turn out to be from your initial expectations.)

Love him, enjoy him, and keep the insurance premiums up to date. (Grin)
Contact the local services for the Blind and visually impaired. They will know who in your area is best qualified to handle your child's visual needs. Let him have as much exposure to the “real world” as he can handle.

He will fall. He will get hurt. He will deal with teasing. He will learn to handle himself. ... If you let him.

I am a parent. I know we all want to believe we can shield our kids from the pain this world can bring. We want to hear the sweet and rosy side. I believe that does no good.

You deserve the truth.

The truth is that there will be challenges. The truth is that he will sometimes have his feelings hurt, be frustrated, and mourn the vision and pigment he never had.

He will also grow to accept himself for who he is. (If you accept him for who he is.) He will learn that he has more to offer than even he can imagine. He will grow to be a strong, confident young man who takes challenges in stride because he has learned how to deal with challenges every day.

All these can happen if you love, respect, and support him as a person first. I am a man first. I have albinism but that does not define me.So Here's the "elevator speech.…

Keep the sunscreen handy and plant a few Aloe plants for when you forget, or his stubborn pride means he won’t put the sunscreen on.

Hats are cool and unique ones can become a way to identify and define one's character. (I wear a Fedora a lot)

Sunglasses are ALWAYS cool.

Have a sense of humor. Don't be afraid or ashamed of the condition. We are advocates for our kids when they are young. They must learn to be advocates for themselves as they age. Being able to discuss the condition openly, honestly, and with humor makes the advocacy that much easier.

I am excited for you and your new adventure. Hang on. It’s going to be a wild ride. But it’ll be a blast if you let it!