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

Monday, March 31, 2008

Bahrain becoming accessible

I have the absurd desire to visit Bahrain some day. It's neat to see accessibility is becoming a priority for them.

Wikipedia has a good piece about the country. Possible site of the Garden of Eden, wealth beyond measure because the country floats on oil. They seem to be using wealth for the betterment of their people. is a Joomla based website....very cool, since I am a Joomla web designer.

A showcase of progress. Not hindered by any lack of money. I think it would be fun to see.

Saturday, March 29, 2008

Spring break....snow?

E had the week off for spring break. Jodie took the whole week off; I just took Thursday and Friday off.

Snow in this part of Oregon usually ends in early March. Washington, just across the mighty Columbia River, always has their spring break a week after Oregon. More often than not, we get rain for our spring break, and they get sun.

This year, we got snow! No accumulation here, but we have been getting showers of a mix of hail and snow.

On Thursday. we drove down to Volcanoes Stadium in Keizer to watch Portland Christian play in a 2A baseball tournament. Nephew Vance played catcher in the game we saw. They won 15-5 in the game we saw. The game was stopped three times due to hail and rain. Friday's games were canceled because of snow - it was really snowing down there Friday afternoon. We did not go town today.

We had a guy come over to give us an estimate on a sun porch. I was thinking it would cost $5,000. Hee hee hee. Naw, it's really not that funny. I don't think we'll be doing a sun porch...

I took Jet White, our monster van, to have the breaks checked. The break peddle has had a little give in it lately. I thought it was more in my head. It turns out a little fluid is leaking in the cylinder when I break -- something like that -- so it was not in my head. The parts are ordered and I go in on Tuesday.

I applied for a job with the web design team with the State. I have created a number of websites, and I manage a few. I don't have formal training, but I have learned a lot on my own. Evidently not enough. I got my "Dear John" letter on Friday.


Tuesday, March 25, 2008

"Tonya Harding option"

More noteriety for our local skating star..

Political Punch

If you can't beat 'em because you're better...

Nose BIeed!

A week ago last Thursday I was sitting in a meeting. My nose started to run. It then saw blood on my paper.

I hurried into the bathroom. I was filling the sink with blood. It was really streaming out! I kept grabbing paper towels. It went on for 15-20 minutes. I kept trying to clean the sink, but the blood was getting everywhere!

I got everything as clean as I could, and I had my supervisor check. It was really embarrassing!

On Easter, I had two nose bleeds at home. The first was almost as bad as the one I had at work. The second stopped pretty quickly.

I called the dr. yesterday. The nsaid pain reliever that I've been taken for a while thins the blood. I was told to stop taking it for a week, then call back.

Hopefully my pain level remains calm. I can use my walker or scooter more if I need to... What's a little pain!

My nose got red last night, but it did not bleed.

Saturday, March 22, 2008

Fellow students help classmate find his voice - Breaking News Updates from Portland and Oregon - The Oregonian -

My alma mater helping a fellow home-schooled student:

Fellow students help classmate find his voice - Breaking News Updates from Portland and Oregon - The Oregonian -

Questions of Faith

I think I am starting to understand what the teenage years are going to be like.

"Mom and Dad, you don't understand."

"But," say we.

"You never listen!"

"But," say we.

We took E to East Hill Church here in Gresham last night. His "girlfriend" (can 12 yo's have girlfriends?) was in the play. It was a play on Barrabas, the criminal who was released instead of Jesus. Barrabas was on a beach thinking about how to live with the fact that he was condemned for crimes he did and was released so that Jesus would die. Eric's friend played the role of a child, asking Barrabas the kind of questions that only a child can ask. She did a superb job, as did her mom....who played her mom.

Afterward there was an alter call. I did not know this would affect Eric the way it did.

We attend a Lutheran church. I attended a baptist church through high school and college. Jodie and I met up again at a non-denominational church in 1990. When they would not stop preaching that I should be healed, and I could not shake my disability and enjoy the "fullness of God," we went back to the church of Jodie's youth, the Lutheran church. The message of God's grace -- no strings attached -- drew me then and continues to draw me 18 years later.

On the way home from a wonderful evening, E took issue with the fact the Lutherans don't choose to accept Christ...their parents "make" them be baptized as babies. E is going through confirmation right now. It started a couple months ago and will go on for a couple years.

Jodie tried to explain the Lutheran beliefs to E. He would not listen. Faith is a gift from God. Baptism confirmation, our whole life is acknowledgment of that gift. It is what God has done for us, not what we do for him.

I understand his concerns. I lost a lot of friends when I met Jodie and started going to the Lutheran church. My Baptist friends thought I lost my way to a Lutheran girl.

The differences in the Christian faiths is so often semantics.

E has a lifetime to figure things out for himself. Maybe when he is old enough to drive the Lutheran church will not be the one for him. It really would not bother me if he finds another road.

E is on the journey with us. He sees how imperfect we are, but how God carries Jodie and I. Life will come at E. Victories, disappointments; successes, defeats; friends who are there, friends who fail.

I pray that he always sees a way to God, and has respect for ours.

Friday, March 21, 2008

Stevie Baum

I was looking for the NCAA brackets, and I came across this wonderful story.

Stevie Baum attends Messiah College in Pennsylvania. She runs the 200, 400, and 800 meter races...besting her best.

She is also helping World Vision in Mali figure out how to get water for themselves, where there are no indoor faucets to turn on. The disabled in Mali are not that visible. Stevie was able to draw many of them out.

Nice job Stevie!

Saturday, March 15, 2008

Let's write this one into the Constitution...

I don't like seeing boxers in public....bare flesh? Nasty!

State passes droopy pants law | Oddly Enough | Reuters

Interesting that it is states in the South that are passing these laws.

Friday, March 14, 2008

Iraq...5 years later...

I remember that night 5 years ago when we decided to invade Iraq. I had been praying for days that Hans Blix and his UN team of inspectors would be given more time to find evidence of the Weapons of Mass Destruction that President Bush knew had to be there.

We had a Little League Baseball parent's meeting at St. Henry's Catholic Church in Gresham that night. My heart was heavy. Being in a church seemed fitting that night. I can pray anywhere, I know, but church adds to the experience to me.

Being at a meeting for my son made me wonder how this war would affect him. I didn't know if it would spiral out of control and bring the world down with it, or a long trudge. Would E have to go there when he turns 18?

Five years later. USA Today has a good article summarizing the war. Ups and downs. Currently a very tenuous up.

My old college buddy, Sam, and I meet a couple times a year to solve the worlds problems. He is a little to the right, and, well, I'm not. We both agreed that we would go in there quick, but it could take a long time to get out.

The war seems to be in a spin keeps going but few of us pay attention to what is happening. Trying to figure out what's really happening over there is hard. I found this piece describing how the Kurds need the support of Turkey. The Kurds were once the darling of the US, but now our attention has turned toward the Sunni and the Shiites, trying to get a unifying force to grow.

Here's an article of an Iraqi general who first was ordered to oppose the US, then he fought with the US backed army to oppose the insurgents. He took a fall for bowing to pressure to open a bridge that had been closed to protect Shiite pilgrims. Mortars fell and over 1,000 died. He now lives in Egypt, nothing but loss to show for his best intentions.

Reconciliation in Iraq seems to be going better than rebuilding. Presidential candidate McCain sees us being there another 100 years. Hillary and Obama want to get everyone talking...let's get a solution worked out.

I don't really understand this war anymore than I understood the Vietnam war when I read the paper at age ten.

E will be 18 in five-and-a-half years. There is been no talk of bringing back the draft. I hope the don't.

Five-and-a-half years. Time enough to pray for the end of war so that I don' t need to have that painful talk with my son "I really don't want to see you go over there, but if you feel you need to..."

Please, God, please....

Thursday, March 13, 2008

Fine lines

Lutheran group affirms traditional marriage in draft statement on sexuality | | Detroit Free Press

"NEW YORK — A task force drafting a statement on sexuality for the nation’s largest Lutheran group said Thursday that the church should continue defining marriage as the union of one man and one wo

However, the panel did not condemn same-gender relationships. The committee expressed regret that historic Lutheran teachings have been used to hurt gays and lesbians, and acknowledged that some congregations already accept same-sex couples.
The report released by the Evangelical Lutheran Church in America is part of the denomination’s yearslong effort to bridge internal differences over the Bible and homosexuality."

Working with people of several different sexual orientations - coworkers who I feel bonded with. Knowing the Scriptures. Knowing and Growing in the love of Jesus.

I don't know how to put it all together, but I refuse to give up.

My church seems to feel the same way.

Thank you George, Matt and Brad

Clooney group gives $500,000 to Darfur relief | U.S. | Reuters

I know so little about Darfur.

Wikipedia discusses the conflict.

Tribal war, genocide, lack of "interests" that would demand the attention of the rest of the world.

Wikipedia notes:

Status Conflict ongoing; humanitarian catastrophe (est. 200,000-400,000 dead and 2,500,000 refugees). A significant percentage of those commiting the genocide have declared victory in their region.

New, new, new math...

When I was a kid, we had "new" math.

E's math is newer....lot's of estimation. When I try to help, he gets it wrong...even 2 years ago when he was in 4th grade.

Report Urges Changes in Teaching Math - New York Times

The math track this article discusses sounds like what his school does...

Wednesday, March 05, 2008

Old friends

When I was in Salem at the Department of Human Services building getting instructions for a special cleanup project today, I ran into coworkers I have not seen for years.

Jodie went to the meeting with me. At lunch we saw Bonnie. Bonnie was in support staff at the Washington County Branch when I worked there from 1989-1995. My first job, we were like family. Bonnie was at our wedding shower, our wedding, and the baby shower we had before E was born. Bonnie started talking to us, and it was for quite awhile.

We also saw Gail. We met her with the opening of the Gresham Child Welfare branch in 1999. I remember she and her husband were into old cars, and she liked to drag race.

At the end of the day I saw Nelson. Nelson and I learned and became foodstamp and medical eligibility workers back in 2002. We both tried hard to learn the job and we both struggled. His kids are 5 and 8 now.

I was struck by how good it made me feel to see these old friends of mine. I was really warmed by it!

The work will fade away, but the friendships and memories never die.

I should be dancing!

I should be doing a victory dance. A couple weeks ago I blogged about a cultural competency course I went to and the inaccessibility I went through getting there.

Today I received apologies from a head trainer and from the head of my district. I feel honored with the sincerity that my employer, the Oregon Department of Human Services, took my complaint. The decision was made that the facility just is not adequately accessible to hold future trainings.

So why am I not dancing?

I would like to say that I am a "together" disabled guy. I'm not. I often wish I weren't disabled, that I didn't have to deal with my disability....that I didn't have to deal with my walker or my scooter, depending on my pain level any given day.

Most of all, I wish that other's were not forced to confront my disability...such as the Ambridge Center.

But you know, the dance of life does not allow me to leave my disability for no one to see. It's with me 24/7.

When I walk out my door and into unfamiliar territory, life is sometimes scary. People might not understand what I say, or might assume my IQ is very low. I have trouble signing receipts. Self-serve cafes are very scary to me.

But when I get around people I know, situations like at work where I am a known quantity, life is easier. I might need to ask a friend for help with my tray in the cafeteria, but later on when someone needs to figure out how to get to a pcms screen, I'm their guy.

I just feel bad in a way that my accessibility needs are a burden I had to share with my agency and the Ambridge Center. It is a learning experience for us all.

Just an aside, I was in Salem today at the DHS building for a meeting concerning the Title IV-E program I work with. At morning break I heard a crowd in the foyer of the building. There was some disability awareness activity. Dr. Bruce Goldberg, head of DHS, shook my hand. And I saw the ADA representative for the department who I had met at the Ambridge Center last week.

I'm playing the Rolling Stones right now...and I'm dancing...

I am a Helen Keller fan...

Rare Helen Keller pic with doll discovered -

A magnificent woman filled with grace and class.

Her quotes inspire me:

Never bend your head. Hold it high. Look the world straight in the eye.
Helen Keller

People do not like to think. If one thinks, one must reach conclusions. Conclusions are not always pleasant.
Helen Keller
Self-pity is our worst enemy and if we yield to it, we can never do anything good in the world.
Helen Keller

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.
Helen Keller
When we do the best that we can, we never know what miracle is wrought in our life, or in the life of another.
Taken from:

Sunday, March 02, 2008

Nephew Vance and the boys take State!

2A boys basketball does not hit the airwaves much in Oregon. 6A are the big schools. 2A, well that is down the line.

Vance is a team captain for the Portland Christian Royals. He is only a sophomore, but he is already a leader on the court.

The team made it to State this year. 2A basketball playoffs are always held in Pendleton, a real cow town about 3 1/2 east of Portland.

Before I talk about Vance, I need to mention his dad, Ken Downey. Ken was kind of like a second father to my wife, Jodie. Ken was married to Jodie's sister, Denise. They were living with Jodie's Mom when we started dating back in 1990. Jodie moved back in with them so we could save money for our wedding. I remember bringing Jodie back to the house. We would pull into the driveway and Ken would start turning the front light on and off, to signal that he knew we were in the driveway, and Jodie better be working on getting out of the car....not something else.

Ken played basketball with the University of Portland, 1975-1979. He was a team captain. I found a link to U of P basketball history. It is a pdf file. If you do a search for "Ken Downey", you will see he played from 1975-1979, received a team captain award in 1978, had a .787 free throw percentage, and is #9 on the career assist list. He was asked to play ball overseas after colleges, but he and Denise did not want to.

Ken became a salesman. He sold different things, but I remember him selling transportation units (truck and rail). The job fit him well. He loved to talk and he love people. He was a very generous man. Jodie and him were tight. If I had not passed Ken's standards, I would have been out the door. But I passed, and Ken walked Jodie down the aisle for me.

Two weeks after our weddings, Ken's bad headaches were diagnosed...and it was not good. Four years later his strong athletic body could no longer fight the brain tumor. I had the honor of collecting stories and writing some words that were read at Ken's funeral. This was December 1994.

Fast forward 14 years. Ken's son, Vance, is a co-captain of the varsity basketball team at Portland Christian. He is a starting guard. He was two when his dad passed away. He is now a sophomore. They had a three loss season this year; none of the losses in league.

Vance is a great basketball player. Yes, I am prejudice. He can score, he can rebound, but his magic is the way he flies around the floor. He is not so concerned with his personal stats as he is with making sure his team is properly tuned. Shots, rebounds, assists, good passes---whatever it takes to the the team a win. He makes plenty of three's, but when he does miss, blink your eyes and he is at the hoop tapping one in!

E was at the 2A basketball tourney in Pendleton for game 1 and game 2. Jodie and I had to listen to those games over internet radio. We drove to Pendleton Saturday to see game 3. Vance had solid play in each game - double digit score and some good rebounding. Game 3 was well worth the 200 hundred mile drive. Western Mennonite was a large team, in height and numbers. It was unbelievable the first quarter score, 2-22! Vance's team went on to win the championship game, 70-38.

Jodie and I were able to go to many of Vance's games this year. They were accessible to us, thanks to a new ramp at a local college, Warner Pacific, where Portland Christian played their home games. Jodie is a screaming fan. People look our way; I shrug my shoulders.

After each game, Vance has a hug for his Aunt Jodie and Uncle Troy.

The spirit of Ken Downey lives on.