Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Monday, January 22, 2007

BBC - Ouch! - Features - Miss Ability

I came across this on OUCH!

BBC - Ouch! - Features - Miss Ability

A beauty contest for the disabled in The Netherlands.

I think it is a wonderful way to make the world aware of "ability" in the word "disability". Okay, that sounds hokey, but you can read my mind.

People will see beyond the disabilities that these beautiful women have and see their beauty. At the same time, they will see disability for what it is -- a part of the person, such as the color of hair or a personality trait, but not the sum of all that a person is.

Disability bothers people. They imagine if they themselves were disabled they would not be able to handle it. It's not a pretty site or thought.

But who can resist beautiful women? They have a disablity, yes...but they are beautiful!

It entices people to look a little longer. Pretty soon the disability is not the predominate feature the see. Beyond the disability is a real person dealing with life.

Let beauty open the door to understanding. Let that understanding stretch to you and to me.

Where is the harm?

Sunday, January 21, 2007

Invisible...

For Christmas, Eric and Jodie got me a digital photo storage unit. It turned out to be a really small screen, so we took it back and I exchanged it for a Creative Zen mp3 player.

I decided to try out Napster's "Napster to Go" service. For a monthly subscription, you can download all the music you want onto 3 different players. We went and got two more players, one for Eric and one for Jodie so we could take full advantage of the service.

Yesterday, Jodie and I went shopping to find a "Playdock", so that we can use our players as our home stereo:

Cambridge SoundWorks : A Creative Company - Shop for speakers, in-wall speakers, computer speakers, mp3 players, receivers, dvd players, headphones and more!


I went to the website for the speakers to see where I can buy them locally. I said Fred Meyers and Seguno Technologies in Gresham.

Jodie and I went into Fred Meyers. We took our scooters in and zoomed over to the electronics section. We went over to where the mp3 accessories were. All of the speakers there were for IPOD, nothing for mp3. Nobody offered to help us. A salesman was offering to help others.

We are invisible.

Jodie and I both have cerebral palsy. When we go to stores, many times we can't seem to get any help. I don't know if they assume we have no money because of our disability, or if they don't think they will understand us.

Jodie went to the counter to ask the lady if they had a "Playdock". She had no idea what it was.

We went looking for the Seguno store but could not find it.

I scootered into Office Depot myself. No offer for help. We like shopping there because of their variety and prices, but we have had many episodes there of not getting help unless we chase somebody down. I found the shelf with all the IPOD stuff. After studying it for awhile, I could see they didn't have a mp2 docking speaker system.

I went to Radio Shack. A very young lady pointed me to what they had. I found a small portable speaker set for Jodie to use at work, but all the fancier accessories were for...you know.

Staples was the same as Office Depot. No offer for help, but they did not have what I was looking for. I scootered around the whole store. Nobody said a word to me.

I am invisible.

We went to Circuit City. Jodie and I both went in. A very kind and knowledgeable young man gave us the lowdown. Stores carry the larger ticket IPOD accessories; they don't carry them for non-IPOD players. The demand just is not there. He said that a warehouse store might have one, but a normal store is not going to carry them.

Jodie wanted to look at notebook computers. We cruised around the computer area. Aisle widths and the placements of special displays make getting around stores so difficult, but that is a topic for another post. No one offered to help us in the computer area.

Invisible.

We came home and I ordered "Playdocks" online, probably what I should have done in the beginning.

Friday, January 19, 2007

I made it to work today...

A one day work week. We still had slush in our driveway this morning, but it was well above freezing. I use a walker part of the time, but not all the time. I had my 11 yr old son help me to the car.

My wife depends on forearm crutches. She could get no traction with her crutches this morning and was not able to make it to the car. She stayed home.

I felt good about getting to work today, but a coworker made a comment as she passed "Finally decided to come to work, huh?" She could have been joking, but I don't know her well and it didn't sound like she was joking.

Part of me is always thinking "I need to overcome!" I get upset with myself when I can't.

She was probably joking. I am probably paranoid...something else for me to worry about...

From Where I'm Sitting: Disability Questions

10 questions regarding disability as answered by Tokah, a blogger with congenital hip malformation:

From Where I'm Sitting: Disability Questions

He was inspired by Emma:

http://wheelchairprincess.com/blog/2006/10/22/disability-questions/

She got the questions of No Pity:

http://community.livejournal.com/no_pity/483067.html

I will need to answer these questions myself:


  1. If you could re-live your life without having your disability, would you?

  1. Do you want people to show interest by asking personal questions about your disability?

  1. What is the hardest thing in life for you to do?

  1. What is the hardest obstacle that you have to overcome often?

  1. Do you resent people that try to help you?

  1. Would you rather do things on your own?

  1. Do you feel any anger towards God because of your disability?

  1. What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

  1. What is the best way for us to help you?

  1. Do you feel awkward when you are around people that are different than you?

Thursday, January 18, 2007

Snow week?

Monday was the MLK holiday. The snow event on Tuesday was much more than had been predicted. We have about 4 inches here in Gresham.

Eric's school is closed for the third day in a row, but most schools are opening 2 hours late today.

I would like to go in today, but our driveway and culdesac has lots of snow. 34 degrees right now. I hope I can get in later, but I don't want to risk falling and getting hurt.

One of the greatest frustrations of being disabled is not being able to do what you wish you could do, think you should be able to do, or feel that others think that you should be able to do.

A lot to worry about, I know, but hey, I'm a worrier.

Wednesday, January 17, 2007

Segways for Disabled People - UBC Reports

Segways for Disabled People - UBC Reports

Hmm.....sounds interesting. I wonder if I could handle a Segway? I wonder if I would still run over people at work when they race around cubicle corners and give me dirty looks when they run into me?

When I started using my scooter at work, I got such sympathetic looks. I eventually started using my walker. Cerebral palsy and back pain - some days are pretty bad. The last thing I want to do is draw attention to myself.

Lately I have been going into work with neither my walker or scooter. It is hard getting them out of the car, and it makes me even more late for work. My new bag is on wheels, so that does not throw me off.

I know it should not matter to me what other people think of me, but sympathetic looks bother me. My wife has no option but to use her crutches. I have options that depend on my pain level.

I am a weenee, caught between embracing and accepting my disability, and gritting and bearing my pain with as little assistance as possible.

I am hard on myself, can you tell?

Give me a Segway - I will run everyone down!

Jessica Simpson's Breasts "Disabled" Her | Huliq: Breaking News

I would trade my disability:

Jessica Simpson's Breasts "Disabled" Her | Huliq: Breaking News

...This made me laugh....

Sunday, January 14, 2007

God Bless Martin Luther King

Martin Luther King day has me contemplating the discussion, or non-discussion, race relations in this country. I didn't have much contact with African Americans as a child. I went to Beaverton High in the early 80's. "Lilly white" Beaverton. I think we had three African Americans in the whole school.

Between my Junior and Senior years in high school I attended a marine science program sponsored by the National Science Foundation. I remember sitting in class six days a week, long days. My desk partner was an African American lady teacher. I remember it was a thrill for me. I had heard bad things about African Americans through the prejudice remarks of certain family members, but I always knew they weren't true. I don't remember having a huge amount of conversation with the lady at my table. I just remember she was very pleasant and it made me feel bad for the prejudicial remarks I had heard in my family, and the separation of the races that I knew still existed.

Yes, I read a biography of Dr. Martin Luther King years ago that showed his good and bad side. He was human; he fell into the traps of the flesh. But his message was power. We are all God's children. Common sense -- its truth seems so obvious -- yet even today the conversation between the races is very uncomfortable.

I find myself having difficulty deciding which term is more proper -- African American or Black. "Black" seems more inclusive to me, in the not every dark-skinned person is of African descent (or do all genetic lines go there?) Nelson, a friend of mine and former coworker, was from Nigeria. I don't think he was American, so as far as I know, so I don't believe the moniker African American would fit him.

I have such a huge mix of nationalities in my heritage that I would not know where to begin to find such label for myself. European American? I don't like that. My father told me that I had some Indian heritage in me. I think he said Iroquois in me, but he may of said Cherokee, I don't quite remember now.

I am American. Any person born here is American in my book. White is the color of my skin, but it is a poor discriptor of who I am.

I am an American with a disability. I have have cerebral palsy. "Handicapped," "physically challenged," "crippled," "retard," "disabled." I have been called all these labels. Some I find offensive and derogatory. Retard I always find offensive; it is delivered as a put-down.

Crippled is a term I am wishy washy with. From a young person I take it as a slam because I figure they should know better. When an elderly person uses that term, I have trouble faulting them. It was the term used in their day. I don't judge them for using a term they grew up with.

It does not bother me if someone describes me as "disabled" as a way to pick me out of a crowd.

It is not so much as what you call me as what you mean when you call me that.

I suppose that all labels, even African American and disabled, are bad. We are people with names and identities. We are not "all alike" whatever group people may associate us with.

Even so, as long as inequalities exist, we will need to use the labels to identify groups in need of special support.

Chicken and egg scenario, if you will. We need to discriminate between groups to provide needed support for individuals, but if we provided needed support for individuals (each other) we would have no need to discriminate between groups.

Does this make any sense?

Thursday, January 11, 2007

SNOW DAY!

The temp on my computer says it is 32 outside. Our culdesac is dusted with snow. Portland Schools were 2 hours late; now they are closed. Gresham is closed. Portland Lutheran and Portland Lutheran and Portland Adventist are both closed -- but not Eric's school -- Portland Christian is open, normal schedule.

Neither Jodie nor I can manuever in slick conditions. We are staying put, for now.

President Bush spoke to the nation last night. 20,000 additional troops to secure Baghdad and cracking down on Sadr City, from whom President Maliki has relied on for support.

I have not supported this Iraq venture from day one. Last night Eric had all sorts of questions. Since Sadaam is gone, why is there still fighting. I explained as much of it as I understand. Sadaam led the country, though he was part of a minority group. Now the majority is in charge, but they don't have much experience at leadership, nor do they necessarily have the interest of all the people.

I told Eric that I pray that the President's new plan works, though I don't agree with sending more troops over there. Seems like we are just putting more soldiers in the middle of another country's civil war. I pray the the President's plan works, but it does not seem likely to me that it will.

Eric had his first regular basketball practice last night. I watched a scrimmage game. The good players had the ball most of the time. Eric was lucky to get a pass now and then. One of the teammates still is letting his temper get the best of him.

I did a special project at work. A spreadsheet was needed with the caseworkers names, phone #'s, and state e-mail addresses. The e-mail addresses were tricky to get because the one's listed in Groupwise contacts are wrong. You have to get them off the state directory on the internet...unless you figure out another way. From the website work I have done at home, I have become a master at the cut and paste, moving between spreadsheet to word processor and back to get stuff done. I completed the list for Rockwood Branch and Gresham Branch and sent it to Paul. Jodie hopes it will impress him with what I can do. I hope so too.

Friday, January 05, 2007

Why was that backpack there?

I picked Eric up early yesterday to get him to his first basketball practice of the season. He told me he was going fast, but "not running" through the library. A schoolmate had there backpack and contents sprawled out in the middle of the floor. Eric tripped, and fell.

At basketball practice, his wrist started to hurt while we was passing the ball. We left practice early and took him to immediate care. Eric has a sprained wrist and is wearing a splint. It doesn't sound too serious and he could be practicing basketball next week.

There are four 5th grade basketball teams in the league - 2 from Portland Christian. The P.E. teacher split the boys to even the teams. Corbett and a Christian school in Vancouver are the other two teams.

Thursday, January 04, 2007

The passing of President Ford

I remember the summer of '74. I spent it in Portland with Grandma & Grandpa Wittren. My family was living in California at the time.

I was very close to them. Grandma called me "Senator". She and I talked politics. At the age of 10, I understood it probably just a little less than I do now.

I remember the Watergate hearings, President Nixon leaving office, and Gerald Ford assuming office.

Forrest Gump taught me further about the bumbling break-in at the Watergate Hotel, and the movie All the President's Men taught me about Deep Throat.

http://www.washingtonpost.com/wp-dyn/content/article/2006/12/27/AR2006122701558_pf.html

I saw Bob Woodward on Meet the Press the other day, and I found the artical by him in the Post. He definitely was not for the pardon of President Nixon at the time, but he now sees it was a good decision that Ford made for the county. Ford's primary reason for the pardon was to get the issue that was consuming more than half his time off his desk, but it also had the effect of pushing the nation past it.

The article tells how Henry Kissinger regularly offered to resign, but how President Ford would take him by the hand and tell him the future of the country was in his hands.

In an interview 2 years ago, President Ford criticized President Bush's decision to go into Iraq. While freeing people is a noble notion, he said, it should not be done when it's not directly tied to our country's self-interest.

I kind of feel bad that Ford was not given a full term to prove himself, but what he did in such a short span of time probably would not be remembered with such fondness.

Tuesday, January 02, 2007

Angela


Angela, 21, came over to mom's yesterday with her mother and brother, who is one.

My brother is her father, but since he and JoLynn were so young, and JoLynn's family were strong Mormons, Angela and baby were whisked away.

Angela has kept in touch with mom each year around the holidays I think. The last time mom saw Angela she was four.

Now she is 21 with a year of college to go. She is studying to be a teacher.

JoLyn brought three huge scrapbooks (Creative Memories) that she made for Angela. JoLyn was in the Airforce for 12 years, stationed in Europe - Germany and England. She said once you are there, travel is very cheap. They went everywhere, and the scrapbooks documented it all very well.

Angela is front right in the photo, long black hair.