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

Monday, December 31, 2007

Walgreens...where's that voice coming from?

Yesterday after church, we stopped at Walgreens to pick up a prescription. We were at the drive thru window and were greeted by a woman's voice. The only person I could see looking at the round mirror into the pharmacy was a man. He never came over to help us.

"Turn your car off!" He voice was not too friendly. Our Jet White is diesel, and is loud, so the request was not unreasonable. What was unreasonable was that there was no face to go with the voice.

With the way my speech is affected by my cp, I don't like talking over speakers. I prefer seeing the people and them seeing me so they know why I speak with difficulty. I drop my debit card in the tray and they get my order.

Jodie gave the voice her name. The voice said there was nothing being held for her, that we waited too long to come in. It would take 30 minutes to fill it.

E came back with me later to get the prescription. He shouted into the mic "We need to pick up a prescription for Jodie Wittren!"

Virginia came to help us. She has helped me before. A friendly face with a name tag.

Much better than just a voice!

Saturday, December 29, 2007

Another wife in the car!

Jodie and E got me a Garmin for Christmas. I never use to get lost when I was driving somewhere. Now, I am over 40.

We were at Target in Fairview, OR, tonight. Our home is just a few miles away.

I turned on the Garmin. Earlier it was showing our location as Kansas. Finally figured out that you need to flip the antenna up.

The satellite picked us up at Target. I punched in our home address.

I drove out the driveway onto Halsey. The Garmin had wanted us to cut through Fairview Village.

I went down to Eastman. The Garmin was not happy. A female voice kept telling me what way to turn. When I did not turn as I was suppose to, she would say "Recalculating".

All the way home, the Garmin kept telling me to go right. It wanted me to take another street home and kept telling me to go right at every street I passed in order to get to that street. Each time it said "Recalculating".

We were all laughing, because every time is said "recalculating" it sounded more and more annoyed! Just like a wife!

Turns out the Garmin was trying to get us to another address the is similar to ours. I must have keyed in "av" instead of "pl". I'm not sure...I just know that we have had a lot of pizza places have a hard time finding us because our address is similar to a couple other locales.

My life story...every turn I make..."Recalculating!"

Jodie wants to change things

Jodie and E painted his room basin blue...while I was a work. I don't know how E moved his dresser and the bookshelf. Ignorance is fine by me. I thought it would look too dark...but it actually looks nice!

Jodie wants to move our office out of our garage into our third bedroom. That means emptying our third bedroom of he 300 plus doll collection. They will be going into storage, into the garage.

Last year our family added insulation and walls to finish our garage. We have two "L" shaped office cube-style desks so that it makes a square "U". I have my 13-inch tv in the corner. I like it out here in the garage...but it is colder out here. We leave the door open that leads into the family room when I am out here. Jodie and E are usually in the family room at night; I'm usually in the office. My objection to that plan is that I will be far away from Jodie and E at night. Jodie contends that she will be in the office more at night if it is in the house where it is warm.

Another piece of the equation is Bonnie and Clyde, our beloved mutts. Dachshund/Yorke mix, brother and sister -- they are wild and untrained. Owners to blame; we except that. We have gotten in the habit of leaving our bedrooms closed....otherwise they drag out all sorts of interesting stuff. Under the new plan we will keep stuff picked up and doors open. Faith and hope that they take the responsibility of having run of the house serious.....riiigghhttt!

As any good husband knows, you don't want to get in the way of a Woman and her plan...

Final tip earned...

Seven years this waitress put up with it!

Foul-mouthed customer leaves waitress $50,000 -

Working during holiday week

I took Christmas Eve off this year. Except for the 2 holidays, I am working all the rest of the time. Jodie let a lot of her workers have Christmas Eve off, so she worked that day and took the rest of the week through New Years.

Jodie has a lot more vacation time than I have. I am trying to save time for out Grand Canyon adventure next summer. Yes, I know the Roloff's did this in recent episode of "Little People". We thought of this before seeing them do it....

Work has been so slow. I am suppose to work New Years Eve day also. Jodie and E want me to call in sick. I am tempted, but in 18 years on the job I have not used sick leave this way.

But being at work when my family, and my brain, is on holiday is really hard!

Monday, December 24, 2007

The Christmas Star

The word given to us at church through our new associate pastor, Pastor Karl Hestor, greatly inspired me. We get set in out spiritual set that we forget about the miracles and wonders of God.

Christmas is about God banging into our world and shaking things up. It happened at the birth of Christ 2000 years ago--the miracle we commemorate tonight. But it also happens today, tomorrow, and every day.

Our eyes of faith are weary. Miracles don't usually happen in our straight-on vision, but rather the peripheral. We focus of what we want to happen rather than what is happening.

The business of Christmas is stress. The right gifts for the right people. Cards sent late...oops! All the preparations.

Take a time out this Christmas to consider the mystery of God in a manger under the starry night 2,000 years ago...and of God in our world right now.

Saturday, December 15, 2007

New disabled parking rules coming to Oregon

Willamette Week had an editorial on SB716, a law that takes effect 1/1/08. It creates two classes of disabled parking plaques - wheelchair users, and non-wheelchair users.

The issue is the over use of the free parking privileges downtown (costing the city bucks), and the lack of disabled parking spaces available to true wheelchair users.

The law, as capsuled on the kptv website:

Senate Bill 716 directs the DMV to create a "wheelchair only" placard -- in addition to the standard disabled parking placard -- for Oregonians needing parking spaces large enough for a wheelchair-bearing vehicle. The bill requires some parking spaces to be reserved for use by wheelchair users only. Use of a wheelchair only parking space without permit will be a Class A offense with a minimum fine of $190.

The dmv website does not reflect this change yet.

I have several questions:

-Jodie and I use scooters. Do they qualify as a wheelchair?

-We use our scooters some of the time, but not all the time. Assuming we qualify for a wheelchair placard, are we breaking the law if we park in a wheelchair spot and don't use our scooters.

-When I use a scooter, parking close to the store is less important. When I don't use my scooter, my endurance is less. Parking close is more important.

Tips fron Grandfather Blogger

I need to grow a beard...

Top 10 Tips for New Bloggers From Original Blogger Jorn Barger

Another website done...

Roger, a friend of mine at church, is a minister to the homeless. He went to seminary a few years back...he can now be called Pastor Roger.

Roger and Ronald Nitz, a pastor from Holy Trinity Church in Portland, are starting a new worship community, a "koine'" community, in Portland.

A week ago Friday I met with Roger for lunch. He wanted a website. He has reserved the domain names and He knows that I do the website for our church, Resurrection Lutheran Church at He wanted to see what I could do for them. I told Roger I could set a Joomla site for them.

Roger emailed me content and pictures...makes setting up a website much easier. All went smooth except for a couple days ago when I logged out of the admin area...and the site was blank. I spent a day sorting through this problem. I googled and found there was a bug in the latest version of Joomla that was causing this to happen. I read through a huge thread on a joomla discussion board, and I replaced three of the php files...bug "hotfixes". Still, this site would not come up.

I started a new joomla site, very reluctantly. I was afraid the same error I was having in the first site would happen in the second site. I proceeded to copy files from the new site to the first site - the hot fixes were not working anyway.

I noticed something different between the two directories where the joomla sites are stored. The permissions on the first directory were tighter than the permissions on the second site. I must have changed then permissions, but I don't know how. A changed the permissions back...and the website came up again. I was so happy!

The website is here. The last challenge was to change the color of the template to match Roger's blog. I had to dig through the template files to find the graphic that made up the top of the website template. It was a small rectangle divided into three differently colored sections. The rectangle is repeated across the top to form the template. I used the rectangle and paint fill tools to change the colors. To find out the colors from Roger's blog, I viewed the source code to find out the color codes.

A lout of work...I know...but it worked!

The last step is to forward the domains to where the website is stored on my host. The domains are currently registered through Network Solutions. I was going to do the forwarding for Roger, but they charge $12 per domain per year to do this. I was surprised, because Godaddy does not charge for this. I researched the two companies. Network Solutions has been around since 1979...the beginning of web time. Godaddy started in 1997. The two are the biggest companies in the biz. It would be cheaper to transfer the domains from Network Solutions to Godaddy and then do the forwarding. I sent all this in an email to Roger. He's probably scratching his head.

Nothing in webdesign is ever simple!

Friday, December 07, 2007

Christmas program

E's school had their band/choir Christmas program last night. His part was with the intermediate school band. He was in the back row with his French horn.

I loved "You're a mean one, Mr. Grinch." At first it sounded disorganized, but then I realized that was part of the Dr. Seuss genius, finger painting with music if you will.

They combined with the high school band to play White Christmas.

The choir was spectacular. The program left my hands...I don't know the name of the songs. One song, I think it was German, they kept repeating a was fun. One of the altos (high voice...right?) was just incredible!

We ducked out at intermission. E had verse to study....and he was hungry!

Thursday, December 06, 2007

Some Success...

For the last week, in my time at home, I have been working hard to update my church's website -

I changed the template, I added the poll, and I got "e-vo" to work. e-vo is a devotion that our new associate pastor, Karl Hester, writes and posts online. People can subscribe to it so that when he writes a new one, subscribers have it e-mailed to them.

I use Joomla cms for the church site. I tried to get various Joomla components to this. I was googling error messages and editing php files. Nothing was working.

I had Karl open a blogger page. I thought I could pull in a RSS feed from that onto the website. Blogger does not produce RSS feeds, but rather ATOM feeds. I tried everything to pull those into joomla, to no avail.

I finally found a free third party program to do the trick, a widgit from Springwidgits. And I found a subscription program with FeedBlitz.

Tomorrow I am having lunch with Roger, a friend from church who ministers to the homeless. He wants a website. He has a good blog going. I am hoping I can help him. I just don't feel real confident in my web design abilities.

Saturday, December 01, 2007

Back to webdesign...

It is flustrating! Now I know why I slowed down my web design efforts a wilee back.

I am updating my church's website, Our new associate pastor, Pastor Karl Hester, has taken interest in the site.

He has a weekly devotion that he sends out by e-mail. Currently he is using a myspace account for this, but he wondered if I could add this functionality to the website. I have spent last night and today trying to do that.

I use joomla for the church website. It a great open source cms (content management system). I found three newsletter componants that would do what Pastor Karl wants. One was too simple and not functional enough, one was way to complicated.....I settled on YANC. When I wrote a sample newsletter, and went to save it, it wouldn't save.

Yes, I am pulling my hair out.

I found a nifty widgit from Feedblitz to allow people to subscribe to my blog.

I am testing it out to see if it might be a good solution for Pastor Karl. The main advantage to this widgit it that people can subscribe without being a member, as it is with myspace.

The other night I was trying to create a new website for the church. I had to log in to my hosting account through cpanel to change a file name. I don't know how, but I ended up deleting all this files...the whole website! I don't know how I did that...

Tuesday, November 27, 2007

Monday, November 26, 2007

Black Saturday...

Jodie likes to tackle the crowds at the mall during the holidays. I prefer to stay away.

In past years we have discovered that the best time to hit the mall for Christmas shopping is dinnertime, right after work.

For the last few years Jodie has expressed more and more interest in being one of the crowd waiting in line at a 4 a.m. Black Friday store opening. One of these years I will be waiting in the van as Jodie shops.

Shopping from a scooter under normal circumstances is tricky enough. People don't see you because you are just below eye level. When they do see you, people try to get around you anyway they can...but they won't let you get around them.

During Black Friday, any semblance of civility when people happen to see me would be off. That scares me to death!

Saturday afternoon after Jodie and E had finished putting the decorations up outside the house, I asked if they wanted to go to the mall to do some shopping. Jodie asked, "Are you sure?" She knows how much I hate the crowds.

We drove Jet White over to Clackamas Town Center. We got there about 3:30. Nowhere to park in back, so we went to the front of the mall. We finally saw an open disabled parking spot. I thought the car coming the other way would take many people have the disabled parking placards anymore. Jet White is big and intimidating, but small cars are quicker and sassier. But behold, the spot was ours.

I took Eric shopping for Jodie first. An hour and a half later we met for dinner at Chili's. They were very accommodating for us with our two scooters...a very pleasant dining experience. Then, Jodie took Eric shopping for me. With one vehicle and one driver in the family, this is a good example of how we do things differently.

To my pleasant surprise, I did not find the crowds too intimidating...the parking lot was way worse. I didn't go in any of the small shops -- scooting around in some of those are impossible.

I found some additional elevators in the mall. The only 2 elevators I knew of before was the one at Sears on the one end, and the one at Penney's on the other end. Now there is a elevator in the middle of the mall (it is glass...I had to convince E that it was safe to go on), and I found a elevator at Barnes & Noble.

We left about 8. We actually had a good time at the mall...on Black Saturday.

Tuesday, November 20, 2007

Visit with Dr. Molly

I went back to Dr. Molly yesterday.

I pulled up to the valet parking area. They thought I was delivering a person in a wheelchair...until they saw me. I have been there enough that they know me by face.

I gave them my name...I think "Croy" is what they got...almost "Troy".

They took the keys to Jet White. I figured they would know enough to not take our 8 in-a-half-foot tall monstrosity into the parking garage...unlike yours truly.

I made it to Molly's office at 2:30...right on time.

"Troy," the sweet voice behind the window asked, "Did you know your appointment is at 3:30?"

Uh, no I didn't. They got me in a half hour early.

I told Dr. Molly about the episode I had about a month ago. My chest was hurting, so I went and saw my main dr., and internist.

It was not my heart. It was the pleurisy, or whatever it is causing my chest pain. I had stopped taking the muscle relaxant and the pain reliever because Molly had told me to wean myself off them after the summer.

So on to yesterday's visit with Molly. She kind of left it up to me as to what to do. Take the least needed doses of the muscle relaxant and pain reliever needed to maintain. I told her that the pain in my chest mis aggravated when I do excessive walking. She said that we may eventually need to discuss mobility aides. I told her I have a scooter and a walker, but that each presents it's own hassles -- getting them in and out of the car. Molly empathized. Her daughter has cp and uses a walker sometimes.

In the end, it's all up to me. How much of the meds to take, when to use my walker or scooter.

It's up to me.

I have always liked to dr. to tell me what to do. I guess they don't know. In the past Molly seems in favor of more meds, but she has come to appreciate that I drive and I work. I need to function with clarity, rather than in the fog of total pain relief.

I left. I gave the guy my ticket to get my car. He came back, asking if there was a secret to starting my car. I could see Jet White parked on the street about a block down. I told him I could get it. My long walk down the street I thought "Gosh, I really could use my walker!"

Saturday, November 17, 2007

Work discrimination....

...From across the pond...

Disabled employees experience discrimination and prejudice at work as one in 10 pay for workplace ad

Have I experienced prejudice or discrimination in the work place? Interesting question...

I don't really know.

Early in my career with the state, I typed case notes. A caseworker insisted that I misspelled the word "inconsistent". I use to be a copy editor. The word was not misspelled. I wanted to copy the dictionary entry for the word...but I didn't. Was the caseworker prejudice against me? I don't know.

I have been overlooked for a couple promotions. Sometimes I feel that if I were not disabled that I would have gotten more of the promotions I have gone for over the years. The job I have now I applied for three years before I got it. I had one person up against me. I had more of the technical skills needed for the job; she got it because she was more social. I figured if I did not have the speech difficulty I have that I would have gotten the job.

I try to let stuff roll off as quick as I can. You only hurt yourself hanging onto stuff.

Bad stuff happens....good stuff roll on.

But Judge....sir...

My scooter technically is not a motor vehicle...or is it?

Disabled scooter rider facing DUI charge - The Money Times

Sunday, November 11, 2007

Disabled in cartoons....

BBC has a story about Aardman Animations introducing 6 new animal characters with disbilities.

Here is a website for "Creature Discomforts".

I can't figure out if this will air on this side of the Pond...

Break Dance.....

....dasabled style!

Handicap Dance Competition - Watch more free videos

Black eye for Oregon

The Oregonian broke this story.

One in five adults with developmental disabilities who are in state care have been abused. Nearlly 7 in 10 caretakers quit in their first year due to low pay.

I am thankful for my independence. I feel for those who are dependent on a system that is so taxed and under funded.

I pray that the Guv and the legislature can do the right thing.

Being a government worker, I know that doing the right thing usually takes money...and getting the money depends on how hight it gets on the priority list.


Wednesday, November 07, 2007

More parking antics....

I drove Jodie to a chiropractor that we have not seen in years yesterday. He has moved from downtown portland to 20th and burnside.

I saw a disabled parking space available, so I turned into the lot.


Not enough room for Jet White, our big Dodge Sprinter,...again!

Backing out onto burnside would be impossible. Pulling into the space might be possible, but pulling out would not.

What to do!

I tried to back in, but as I turned the wheel I was too close to the building. I kept pulling up perpemdiculer, closer and closer to the parkes cars. I cranked the wheel real hard. Cleared the end car and the building, and I parked.


Tuesday, November 06, 2007

Joba Chamberlain and his dad

I read this article from Sports Illustrated at the shop while having our lift in our van looked at.

The part that describes Joba helping his father get his scooter out of the car reminded me of how my own son helps Jodie and I with ours.

I also like that his dad has a scooter just like mine.

Sorry that it is a 17 page article. A very good read!

Friday, November 02, 2007

Catch me at Disaboom

I have a blog up and going over at Disaboom.

I blogged about the site in August before it was up.

I like it over there. It is an upbeat encouraging outlet for us differently abled folks.

My dilemma now is what to blog here and what to blog there.

A coach getting his due honor

Mark Speckman is an inspirational coach. Not by his choosing, I'm sure.

Mark was born with no hands. His bio is impressive.

He will be honored this weekend as one of Liberty Mutual coaches of the year.

I can't find a reference to it online, but in a local newscast Mark said when a player goes down he likes to put up both his arms and ask "How many fingers am I holding up?" It made me laugh.

Wednesday, October 31, 2007

Zero clearance...

I went to a work retreat today at the training annex in the Lloyd District. Dept. of Human Services are not allowed to park in the parking garage's reserved for the vocational colleged that is there. There are disabled spots there that I have always been allowed to park in.

I am a poor judge of the heighth of Jet White, our Dodge Sprinter. Eight feet, four inches is tall.

I pulled into the garage. I heard the antenna hit the ceiling, but I seemed to fit okay. I pulled into a disabled parking spot. When I got out of Jet White and walked around back to unloaded my scooter, I was horrified to see that there was not clearance between the top of Jet White and the ceiling of the garage --- it was pretty much touching it!

Coworkers Ruby and Sheri walked up as I was getting my scooter. They could not believe what I had done! The front of the van was in the open, but the back of the van was under the covered area. Out radio antenne is on the front, centered on the roof. It looked like it would snap off when I backed out. Ruby and Sheri just knew it would.

Ruby went out by the van during afternoon break for a smoke. When she came back to the meeting room, she told me there were some "suits" looking at me van, and that they wrote down my license.

When the meeting was over, I went down and started loading my scooter in the van. As I was backing onto the lift, a security guy drove by and told me to tell whoever was driving the van to be real careful when backing out. He did not know that the guy with CP on the scooter--me--was the driver of the van!

Ruby and Sheri drove by and backed into a nearby space. Wanting to see a train wreck, wanting to help me if I needed help, wanting to help me get my broken antenna. I couldn't blame was going to be interesting!

I very slowly backed out. I heard the antenna moving around, but I did not hear any scraping.

As I pulled into the open, Ruby and Sheri were both giving me a big thumbs up. I made it!

I went and picked up E. I asked him if the antenna was still there. "Dad, what did you do?"

What can I say? I am good.

No...I am lucky!

Sunday, October 28, 2007

Jodie and I updated our rides.....


We did not go through insurance this time. We wanted a slight upgrade.

It's expensive being disabled...anybody notice that?

Our old Victory scooters...six years old...Mine was banged up by having to be lifted into the old minivan and hitting the bar in the hitch that was needed for the outside lift the Jodie's scooter rode on.

Sunday, October 21, 2007

Access blocked!

It was a miserable Oregon day for a football game, but our son, E, had a game yesterday at Westmoreland Park in Portland.

There was not a place to park close to the field of play, so we drove down to the larger lot. I like having the more space for our big White Bus -- we never have decided on a name. Jet White?...I'm still not sure.

E got out and ran to join his team for pre-game scrimmage.

Jodie and I unloaded our scooters and headed for the field. Westmoreland Park is a Portland treasure. It hosts a huge pond with lot's of ducks. Feeding the ducks is at Westmoreland Park should be on the top ten list of things to do in Portland.

There is only one access ramp in this area the park. Here is a street view photo. It is a simple blacktop ramp.

It does the trick -- when it's not blocked!

Jodie and I scooted down to the ramp. The two disabled parking spots were filled, as were all the parking spots nearby. On the ramp was parked a lady in a SUV who had her car running and was working on getting her son's football pads on.

I was annoyed; Jodie was ticked!

The lady saw us. She was obviously sorry, but she was getting her boy ready. She was the only adult, with other kids in the car.

I had empathy for her situation, but where is the empathy for us?

Able bodied people will not understand what blocked access feels like until they themselves or a loved one they are with cannot get where the need to go because of a blocked ramp.

The mentality that "I'm only going to be a second; there are no wheelchairs around..." -- you know, this is the number one barrier that still exists for the disabled.

A ramp is access. A ramp that is used as temporary parking is not access. Able bodied people don't understand this. They assume that we, the disabled, have more patience than they do.

It is hard to think of a good example of an able bodied person having their access blocked. All I can think of is a freeway on ramp blocked by a parked car. The driver was running into the store to get a pop, or getting their kids football pads on. You pick the scenario. For someone wanting to access the freeway, they want access now. Yes, there could be an emergency scenario that closes access.

The point is that you would not close a freeway on ramp for non-emergent reasons. Drivers are not going to have patience to wait for that. Why should the disabled wait?

As it turned out, I drove up the ramp....very tight fit. The lady then backed up and let Jodie use the ramp. She then pulled back on the ramp.

I got the feeling Why can't they (the disabled) just wait for me?

Saturday, October 20, 2007

Neil Young's best ever - Chrome Dreams II

Chrome Dreams II - Wikipedia, the free encyclopedia

I loaded this on my Zune and listened through it twice at work.

Classic Neil...shivers down my spine.

"Ordinary People" is an 18 minute epic. Awesome lyrics!

Tuesday, October 16, 2007

Disabled on Segways?

Disabled groups are asking Disney World and SeaWorld to allow disabled to use Segways.

What's wrong with scooters? I can't stand that long...

Saturday, October 13, 2007

In honor of Laurie & Rebecca Recht

Very sad...

This story is sad.

Laurie Recht, disabled mother, with a 14 year old daughter, Rebecca Recht, who had cerebral palsy, had a tough life.

Public school was hard for Rebecca. Kids teased and bullied her. Laurie pulled Rebecca out of public school and got her into private school.

Peter Yarrow of Peter, Paul and Mary fame, came twice to hold benefit concerts to help with Laurie and Rebecca's expenses.

It wasn't just the private school. Rebecca was having other medical problems that doctor's were trying to diagnose.

Laurie was trying to make ends meet with her disability check, selling whatever she could on craigslist, and trying to start a online business.

Jodie and I were talking about this story. It hits home with us in so many ways.

We attended Holladay Center together as kids. In the 60's and 70's it was a school for the disabled in Portland. Jodie and I remember it fondly as a safe place where we received specialized attention--physical therapy, 0ccupational therapy, speech therapy. I was a "pusher" when we went on field trips because I could help push the wheelchairs.

We were eventually maintstreamed. I went to Beaverton schools; Jodie went to Portland schools. My mainstreaming experience was generally positive. My main accommodation was a typewriter that followed me wherever I went.

Jodie's mainstreaming experience in Portland Public Schools was bad. Stairs, no elevators or ramps. One teacher did not like the sound her crutches made. One school made Jodie sit in the counselor's office for the entire year because they could not (would not?) stop other kids from knocking her down and bullying her.

Jodie and I feel for the struggle that Rebecca went through in public school.

Here's a story about a television executive who sued and won a lawsuit requiring New York to pay for his son's special education at a private school because the public school was unable to provide it.

Laurie, a single mother with the responsibility of raising a daughter. Trying to find a job as a disabled person is not easy. I had a college degree when I went looking for work, but it was not enough. I had to volunteer as a way to prove myself. Making money off the internet, as Laurie was trying to do --- it sounds easy, but it's not.

Jodie and I have the love and support of family. We have been blessed with faith in God.

I wish Laurie and Rebecca were still alive. I wish they had found the hope and support to keep going.

Thursday, October 04, 2007

Saturday, September 29, 2007

Message board for disabled parents

In '95 when E was born I remember searching message boards on the net for info on disabled parents. I was graduated from Prodigy to AOL. Google wasn't around yet.

I found information about families with one disabled and one able bodied parent. I found horror stories about ladies with Jodie's brand of cerebral palsy who had a child and the birth event caused them to be paralyzed.

I stopped searching the boards.

Here is a new message board from Ouch! that looks good:

BBC - MESSAGE BOARDS - Ouch! - Ouch! Parents

Jodie and I did go to one occupational therapy session prior to E's birth. I was surprised that most of the session was focused on me, the dad. Jodie and both have cerebral palsy, but my arms and hands are more affected. The main thing I remember from the session was handling a 2 liter bottle of water in a sling, simulating what it would be like to handle a baby.

Reality turned out to be much different. I never did carry Eric. We used a stroller inside the house to get Eric wherever we needed to. Jodie did the major handling of Eric when he was a baby, but I did everything I could to support her. I would distract him with a rattle when Jodie had to change his diapers. I crawled with him on the floor. I drove to the store to get more formula and Pampers. I was a dad.

Now we talk politics and history. I pick him up from football practice, basketball practice and baseball practice. I never miss a game. I am a dad.

Wednesday, September 26, 2007

Karen Gaffney

Karen Gaffney is an incredible local (Portland area) woman with down syndrome. I am leery of using adjectives like "incredible" for fellow disabled. People underestimate what we can do and shower us with flowery adjectives for just getting up in the morning and facing life. It does not matter what we do -- it's incredible!

I remember Karen's 2001 swim across the English Channel. No simple feat for anybody. It took grit and determination.

This month Karen took on a new challenge. I am moved that Down Syndrome does not need to be in the headline to make this a story: Local woman makes history with Lake Tahoe swim KATU - Portland, Oregon Local & Regional

A film is in the works. Here is a blog about a film documenting Karen's swim across Lake Tahoe.

And Karen is the president of a self-named foundation "dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities."

Karen's newsletter tells about inclusive arts and exercise programs that she is involved in.

I see life and joy in her face. I admire her spirit.

Thank you Karen!

Monday, September 24, 2007

Pet Peeve...

I returned to our sprinter van the other day after E's sunday morning double header "fall ball" baseball games. We were parked in a disabled parking spot. There was another disabled parking spot next to the one we were parked in. In between the two disabled parking spots was a striped off area that is meant to give extra room for the disabled who park there.

The disabled spot next to the one we were parked in was empty, but parked in the striped area was a Toyota truck.

I really hate when people park in the area between disabled spots. People seem to think that by parking in the striped area that it is less of a wrong than if they parked in the vacant disabled spot.

Oh so WRONG!

The striped off area is where I park our scooters while I am getting the lift up and down. It is where people who use wheelchairs maneuver in and out of their wheelchairs. We use that area to open our doors wider so we can get in and out of our car easier.

I parked my scooter in front of the Toyota. What I did not realize at first was that the Toyota truck was my nephew's! He has not been driving long. He is 15 and had driven to the park with his mom, my sister-in-law. My dear sister-in-law had told my nephew it was okay to park there.

My nephew could tell I was upset, but he and his mom, everybody was laughing it off. That made me madder.

Jodie has had cerebral palsy from birth. He sister should know better than to teach her son that it's okay to park illegally between two disabled parking spots...but she doesn't.

They were laughing about it. More words from me weren't going to make them understand.

It's nice to have a place to vent.

Friday, September 21, 2007

Disabled kids fitting in...

This is a great story. I think you have to register to get beyond page 1...a pain, I know...

Girls Bask in Their New Destiny: Cheerleaders -

I was on the chess team in high school. I was able to go to different schools to play. I was the team president. I could beat beginners, have long drawn out games with mediocre players like myself, and get whipped by good players. Being part of a team was priceless.

These kids and their supporters are champions. God bless them all.

Monday, September 17, 2007

Stop...or we will shoot!

It has been a year since James Chasse died in the custody of the Portland Police.

The police had trouble subduing Chasse. He was tasored and beaten in this effort. Chasse had schizophrenia. A positive to come from this is that the police are being better trained to deal with the mentally ill.

I remember visiting a missionary in San Francisco in the mid 80's. The Reagonomics solution to the mentally ill was a one-way bus ticked to San Francisco. I'm not certain how true that was, but I know services to the mentally ill were cut then and have never rebounded.

The mentally ill end up in the hands of the police, and they fill our jails.

I like to listen to Lars Larson at lunch time. I disagree with a lot of what he says, but I enjoy the discussion.

Today I had to turn my radio off. He really bothered me with his ignorance.

Lars put all the blame for Chasse's death on Chasse himself; that he should have stopped when the police told him to; and that his family should have taken better care of him.

Lars went on to say that the police should be told where groups of mentally ill live. He called these places "Loony Bins." I was really shocked!

I was introduced to a guy named Tobin when I was a student at Oregon State University. Tobin was not a student at the university. He had manic depression pretty severely, and Corvallis was a quiet college town for him. He liked to walk great distances. He was into heavy philosophy. I felt like a lightweight intellectually when I was around him.

A couple years after I graduated, I was between jobs. Tobin put the money up for a road trip to California. I drove. He made me mad one night. We had walked the boardwalk in Santa Monica. Some homeless folk offered bong hits and Tobin took a couple. As we were heading back to where we were staying, I was getting onto the Santa Monica Freeway. Tobin got sick and opened the car door. I was soooo mad!

I got married, and then a few years later E was born. I never was real close to Tobin after that trip. I felt guilty.

He moved to Portland, against his mother's wishes. A bigger city, more for Tobin to see and do, but more trouble to get into.

For peole totally unfamiliar with mental illness, a large part of dealing with it is finding the right medication that treats the illness. The tragic part is that the perfect medicine looses its effectiveness as the person's tolerance to it increases.

A few years ago Tobin died. He was walking along I-5 and he stepped in front of a truck I think it was.

Lars must not have a Tobin or a James Chasse in his life. If he did he would see the need for mot mental health services and for more awareness, not just for the police, but for all of us.

Wednesday, September 12, 2007

Environmentally friendly bomb?

Russia tests 'dad of all bombs' -

"Channel One television said the new weapon, nicknamed the "dad of all bombs" is four times more powerful than the U.S. "mother of all bombs."

"The tests have shown that the new air-delivered ordnance is comparable to a nuclear weapon in its efficiency and capability," said Col.-Gen. Alexander Rukshin, a deputy chief of the Russian military's General Staff, said in televised remarks.

Unlike a nuclear weapon, the bomb doesn't hurt the environment, he added."

Sunday, September 09, 2007

Prisons Purge Books on Faith From Libraries - New York Times


Prisons Purge Books on Faith From Libraries - New York Times

“It’s swatting a fly with a sledgehammer,” said Mark Earley, president of Prison Fellowship, a Christian group. “There’s no need to get rid of literally hundreds of thousands of books that are fine simply because you have a problem with an isolated book or piece of literature that presents extremism.”

There is still a lot of religious titles available -- 150 from each of 20 religions. The Bible is still there.

Eight titles from C.S. Lewis are in; all Robert Schuller are out.

150 titles seem generous, but to inmates with years served and years to go it's not.

It is meant to weed out extremist religious material. Prisons evidentally have become a fertile
ground for Muslim extremism.

As with so much with this "War on Terrorism", the liberties of many are being sacraficed in an effort to possibly prevent the evil deeds of a few.

Wednesday, September 05, 2007

Monday, September 03, 2007

Jerry Lewis telethon

Jodie loves to watch it. She would love to meet him one day. She use to keep the tv on all night when it was on, but not this year. She has been a huge fan since a child.

My admiration for the telethon goes up and down. I think it is a good way to bring disability awareness to people, but I don't like the pity it pleads for.

I remember my mom telling me that as a child I was asked to be on the local part of the Easter Seals telethon. They wanted me to sit in a wheelchair, even though I did not use even a scooter at the time.

It was a show...yanking people's heart strings to get money.

This blog selection is angry about the pity aspect, as well as Jerry referring to people in wheelchairs as being half a person.

And there is the controversy over whether Jerry used the other F word on this year's telethon.

This year's telethon netted more than $3 million over last year's.

This guy claims that muscular dystrophy was cured 15 years ago, and continuation of the telethon is a charade to keep Jerry happy.

The telethon has given birth to an online protest.

I quickly get bored by it. I keep it on because Jodie likes it. She loves Jerry and the whole "Jerry's kids" thing. She always says that the research that is done on behalf muscular dystrophy could eventually lead to cures for conditions like what we have --- cerebral palsy. And, in a weird kind of way, Jerry is a loving earthly father figure on behalf of the disabled --- a Santa Claus of sorts.

Why ruin that?

Saturday, September 01, 2007


A great story out of the Philippines about putting PWD's to work putting together technologically advanced wheelchairs. I was struck by the term "PWD".

Giving hope to the physically challenged -, Philippine News for Filipinos

I have heard the term persons with disability before, but I have never seen the PWD term before. It seems like a clean, descriptive acronym.

Wikipedia defines PWD as persons with disability or Portuguese water dog.


Wednesday, August 29, 2007

Blade Runner

Interesting debate. Man with no legs, runs on carbon fiber limbs. Does that give him an unfair advantage over abled body runners.

Zuza Fun » Disabled runner too able

Oscar Pistorius is the guy's name. There is a wikepedia entry on him.

NY times did a good story on him. He does not see himself as disabled, and he has his sights set for the 2008 summer olympics.

"Still, the question persists: Do prosthetic legs simply level the playing field for Pistorius, compensating for his disability, or do they give him an inequitable edge via what some call techno-doping?" --excerpt NY Times

An open letter from Oscar's prostetist.

Oscar is a first class athlete in my book.

Saturday, August 25, 2007

At the Fair

This morning after we went to E's school to take care of registration, we decided to go down to the Oregon State Fair.

Since getting our scooters in 2002, we have gone to the state fair every year but one.

E likes the rides, Jodie likes to look at the vender booths, I like to look at the animals.

I like the fair, but it seems like a bigger money drain every year we go.

The rides. This year it was 40 tickets for $20. Sounds like a good deal, until you see that most rides require 7 tickets --- that's $3.50 per ride! E likes the tilt-a-whirl and the bumper cars.

In the past I have gone with E on a couple rides. Today I was not feeling like going on rides, but I did go one round with him on the bumper cars. I did not want to be an all out party pooper!

I got into my car alright. I noticed that my knees were up against the small steering wheel. I was not sure how I would do steering, but I managed to get around fine. I use a steering know when I drive our van, so a small wheel with no knob is a challenge. The sterring wheel moved freely, and I was able to one-hand-it by spinning the wheel with my left hand across the top.

I was able to run into E a few times...and he ran into me. We had fun.

The ride was over. Everybody was out of their cars and and off the floor. I was stuck in my car. One of the young guys running the ride came over and asked if I needed a hand.

Such a disabled moment!

Of coarse I needed a hand, but his hand was not going to get me out of the car. E came back. Even though he's not real big, I feel more security with him because he knows the kind of help I need. After some struggle, I was able to unfold my legs, stand up, lift my legs up and out of the car, and get out.

My pride takes a dive again...but I had fun with my son on a ride.

We then went to the vendors. We started outside. The outside vendors were not crowded. E had some money to spend and it was burning a hole in his pocket! He bought a new wallet to hold all of it.

I saw a pillow I liked, one that would provide neck support. Jodie asked "How much?"....$99....No thank you!

Jodie likes to look at everything...she does not buy a lot.

We then went to the vendors inside this large hall. I like to see what they have in there and all the cool demonstrations, but I hate the crowds! Scooters, wheelchairs, strollers and people everywhere! People stopping to look at stuff, trying to get around them, while people are trying to get around us. Some of the aisles are really narrow, and some people's patience is really short.

E wanted to buy wood carved tank. It was beautiful...but costly No E. "But!" No, no and no! Being a parent is so hard sometimes! A little later, we came across a "String Thing"...pretty cool! We let Eric get one. It cost much less than the wooden tank.

I saw a rubber broom that looked really cool. Eric said we could use it for the van...well, we could....but I did not want to party with another twenty.

We then went for some food. Deep fried Snickers or Twinkies anyone? I almost tried, but I chickened out.

We made the trip through the barns to see the cows, horses, sheeps and goats. We saw a dog show. We heard a guy singing everything from old rockn'roll to country. If you have never heard The Big One, you need too. Confederate Railroad does a version....probably is their song.

Jodie waited in a long line to get ice cream for her and I; I took Eric to find a snow cone.

It was a good day at the fair!

Sunday, August 19, 2007

Sunday Afternoon at Walmart...

We are doing more of out grocery shopping at Walmart these days. I know it is not a good thing to do per my union -- poorly paid workers with few benefits - but we save a lot of money there.

Lot's of other people must feel the same way, because it is always so crowded!

Jodie and I take our scooters. E pushes the shopping cart. We are like a train.

If you have gone to Walmart, you know that certain areas of the store are very crowded, and other areas are very open.

Most of the grocery aisles are very crowded. Jodie is usually in the lead, E in the middle, and I am behind. I try to stay as much out of the way of other people as I can. I am timid. Jodie is bolder -- she has all the rights to be there as anyone else.

Jodie is right, of course. But I get antsy when people are behind us, wanting to get around us, but they can't. My inclination is to do everything I can to get out of the way. Jodie does not care -- she is there and they can wait.

Some people get mad and start cussing. Some people wait patiently. Some people push and shove their way through.

I always feel funny when someone wants to get an item, but we are blocking their way. I move ahead, or stay behind a bit so that we are not so close together. My favorite thing to do so that we are not too close together is to split off onto my own venture to go get something or look at something.

People have such razor thin patience anymore. I always wonder why people who are in a hurry go to Walmart. It's crowded --- the aisles, the checkout lines.

Even so, I hate to be in the way.

Live for the Possibilities

A very nice sermon regarding accessibility:

Live for the Possibilities

Saturday, August 11, 2007

Another cool ride....


I want one...

I am tired of googling.

When is this coming to the States? How much?

Honda Worldwide | 4-Wheel Scooters

Trying out the scooters

Today we went to All in One Mobility. We hat a clip missing on our lift. Kind of hard to explain, but it would cause a arm to come off and the lift to not work. A very kind service man took a look at it, then ran to the store to pick one up and replaced it for us. Cost was nothing. These guys are great.

While we were there, Jemal let us test ride some scooters. We found one for Jodie to test ride. Jemal had E try it. I teased "He doesn't have his license yet." Jodie was siting in the van. I had E drive it out to her. Jodie rides her scooter to work, a mile away, every day. This bad boy would get her there in style. Jodie did not like the height or the feel of it, but it would be priceless to see her support staff watch their office manager riding in on this chopper of a scooter.

I drove it back in the had a lot of power!

Jodie and I test drove a couple scooters. We are not quite ready to buy. Our two Pride Victory's are getting worn, and in the shop more and more. Jemal let E ride a power chair...he had way too much fun with that!

Later in the day we went to a cruise in of old cars in Gresham. The were raffling three scooters, the non-mobility types. One was decorated for the U of Oregon Ducks, one for the Oregon State Beavers, and one was plain.

E won the plain one! We could not believe it! We are now proud owners of a "Vega" scooter!

Thank you Jemal for your kindness!

Thank you Gresham's Rockin' Around the Block for such a great prize!

A good day...

Friday, August 10, 2007

China's disabled children are sold into slavery as beggars | World | The Observer

So, how did China earn the privilege of hosting the 2008 summer olympics?

China's disabled children are sold into slavery as beggars | World | The Observer

That could have been me...had I been born on the other side of the world.


Beautiful lady -- inside out

After school activities is so important for kids.

Eva Longoria Blog News: Eva Longoria Opening School For Disabled Children

I played chess, did computers, Spanish club. Finding activities that I could do with non-disabled kids where my cerebral palsy did not get in the way was so important to myself esteem.

God bless you Eva...

Thursday, August 09, 2007

First cell phone commercial - 1989

Pretty cool!

Thank you

Chris Fonseco - very funny

Chris Fonseca

I saw Chris on TV a long time ago. Such a treat!

Independent Living Technologies

An impressive catalog of products to make our life easier...

Independent Living Technologies

New Talllest Building - Burj Dubai

For fellow boys (over 40) who still find this stuff cool...

Burj Dubai Official Website

The website is gorgeous! As a rookie designer wannabe, I find this impressive. The music is a bit annoying.

66 elevators...10,000 tons of cooling per hour...250,000 gallons water per day...20 mph elevators...

Tuesday, August 07, 2007

South Korea helping Ugandan disabled

There is good news out there.... Uganda: People With Disabilities to Get Sh3.4b Centre (Page 1 of 1)

U.S. Disabled Alpine Ski Team...

I didn't know that these guys wer practicing cool!

U.S. Disabled Alpine Ski Team Runs Gates and Wickets at Mt. Hood :: First Tracks!! Online Ski Magazine :: The ski and snowboard world at your keyboard

Jodie use to ski with a "ski bra" that kept her skis apart. She's told me the story of calling out to her partner "My bra is slipping!"

I was on skis once at Laurelhurst park. Snow was on the ground in Portland, so it was a good place for a first lesson. Unfortunately, I dislocated my knee a few days later and could not continue the lessons.

Sunday, August 05, 2007

Blind golfer....

Very cool story. Golf by feel, not sight.

Blind golfer Suleiman Rifai goes to the driving range. | Tours & News |

Determined teacher and student.

Disabled enough for a disabled parking placard?

During our recent venture to California, the topic of disabled parking placards came up a couple times.

One night we went to Red Robin for dinner. There was nowhere to park; we were considering going elsewhere. A parking attendant -- I think that was his job -- saw us searching. He directed us to park along a curb by the dumpster. He explained to us that in California that if you have a disabled placard that you can park along any colored curb except for red. He told us that a few years ago that he was hit by a car and that he was layed-up for months, only recently landing his current job.

When we went places with family we were staying with while our car was getting fixed, we brought our disabled placard. Cindy told us that the disabled placards were a hot issue down there because so many people had them, and they perception was that any of the people who had them were not disabled, but were cheating to get the parking advantage.

The issue is causing a lot of rage in California, as in this blog entry. 1 in 16 Californians have the disabled placard...that seems like a huge amount!

Sacramento Bee columnist Anita Creamer inspired this blog entry with her August 3 column (registration required - sorry). The issue is people with non visible disabilities (like back problems) having to explain to non-disabled people who want to know why they are using a disabled placard with no apparent disability.

I feel sorry for people with invisible disability. My cerebral palsy is very obvious; nobody ever questions whether I am disabled. I have also had disk pain...that can be debilitating.

When I am in the car and drive up to disabled spot, I have has people watch me until I get out of the car, as if they want to make sure I am disabled. They watch me until I get out of the car and start walking. Our new Sprinter van has a rear lift that you can see through then rear windows, and our last van had a rear outside lift, so people usually get a clue from that that I am disabled.

Sometimes it seems that the elderly feel that the spots should be reserved for them. I get looks from disabled drivers searching for a spot and I am about to get out of the car.

I don't spend time worrying about disabled parking cheaters. I always figure they must have a reason. I have no time for a witch hunt.

I did find humor one time years ago at Beaverton Mall. Two handicapped parking spots. One of the vehicles was a very small sports car, and the other was a pickup that was jacked up 5 feet off the ground. It seemed humorous to me, as I wondered how a disabled person could get into either vehicle.

I do get frustrated when I go to WalMart and cannot find a disabled spot to park in. It is not really for a lack of disabled spots -- they have a ton of them. They are just always full!

Before Jodie and I got together, I did not have a disabled card. I didn't really want one. I could walk. I never wanted to take a disabled spot from someone who might be worse off than I.

With Jodie, and a few more challenges myself, I now regularly use the disabled spots.

Maybe someday there will be a disability rating system. Different colored cards for the more severely disabled, matched to the best parking spots.

What a fun witch hunt that would create!

Workers needed...Malaysia looks to the disabled

Malaysia has a severe labor shortage. One of the goals to rectify this includes looking into putting mire disabled to work:

"Under-employed resources need to be actively investigated and developed for inclusion into the workforce, especially as Malaysia has a relatively small workforce. These include jobless youths, women, part-timers, older workers and the disabled. "

Expert views on how to mitigate talent shortage in Malaysia

Wednesday, August 01, 2007

New online disablity community coming

This sounds exciting.

Disaboom - - About Us

Being disabled is not tragic, but it is always a new challenge.

On our recent trip we discovered a variety of accessibility when it comes to hotel rooms. Jodie needs bars to get in and out of the tub. Some places have it, others don't. We probably won't be traveling for awhile, but when we do, we would like to find something to take with us that would help Jodie get into any shower we end up at.

Is there a portable bar system?

Disaboom might help with that kind of information.

Sunday, July 29, 2007

Back Home

It took a week for our car to be fixed. The insurance adjuster saw our car on Tuesday, and getting the parts and the alignment for a Sprinter -- it all takes time.

We got the call late Thursday that out car was ready. Our host drove us down to Studio City to get our car on Friday morning and we were off.

We made it home to Gresham, Oregon by Saturday night.

I will remember this trip with fondness. Two disabled adults, Jodie and I, took our son to Disneyland, a thousand miles away.

We ran into trouble. Accidents are no fun. The security and parking people at Universal were not nice to us.

Jodie was in tears on the phone to Triple A. The lady on the phone said everything would be okay. The tow truck guy said we would be okay. The mechanic said we were in good hands. We spent a week getting to know family better in Santa Clarita better. Jodie made the dozens of phone calls.

E saw that bad things can happen, but you get through them.

Asking for help is a part of life.

Thank God for good people in this world who answer the call for help.

Sunday, July 22, 2007

Back to Universal

We made several phone calls after the accident. One was to Universal Studios to let them know what happened to us in their parking lot.

We told our hostess how well the Disney staff treated us and that we were suprised to not get that fine of treatment at Universal. We called customer service and spoke with a kind gentleman named Sergio. As we suspected, the parking attendents at Universal are contracted out. He said he would look into what happened to us and how we were treated.

Cindy, our hostess, called Sergio back later and was able to get discounted tickets for us.

Last night Cindy and Rick took us back to Universal. We called Sergio and were able to get free parking. Interestingly enough, we were directed to VIP parking, and when we got there were told it was employee parking and we had to turn around.

We missed the last tour, so we might go back on Tuesday. We walked through City Walk, and we had dinner at Comancho's, a wonderful Mexican restaurant.

Thursday, July 19, 2007

Nightmare at Universal

We decided to stop at Universal Studios on our way out of L.A. We made our way through the gridlock on I-5 and 101. We took the exit to Universal Studios Blvd.

We were told to look for the Woody Woodpecker parking lot. We found the lot, but we were waved on by the attendent there. The attendent at the next lot said the our Jet White would not fit in their garage and had us turn around. We pulled in to Woodpecker lot, but there was no placen to park. The guy told us to look for row "H", but the right turn to get there was blocked off. I drove back onto the road, trying to get to row "H". All the entrances were blocked. I didn't know where to go. The parking attendant told me to turn around. I thought about leaving the park because I had no idea where she was sending us.

I looked, and I made a "U" turn. Bam!

We were hit as I began to turn.

The lady's car screeched a lot before she hit us. She said she did not see us, but Jet White is big and hard to miss. She was driving a rented SUV, on the small side. Her front right was pretty damaged.

Security and parking attendants came over to check things out. When they saw me and my brand of cerebral palsy, I was not taken very serious. I asked Jodie to get out to help with communication. We were not taken real serious.

We called our insurance guy to coach us through the process. He was so helpful. We exchanged all the information.

Our van did not look very damaged. We went to leave. The van was making a screeching noise. Security came back. He directed us to a turn around street. He wanted us to try to park in the lot, but I did not feel safe doing so. Later an attendant drove up in a golf cart and yelled at us to move our car into the lot and we just shrugged.

We called AAA. The first towtruck was too small. He radiod for a flatbed. The flatbed came. The concern was our height added to his and making it through the under passes. He was really nice. Jodie could not get into the truck. She and I rode in our van on top of the flatbed. He took us to Studio City Automotive.

The owner, Ed, was super nice. He could sense that Jodie and I were a wreck. E was amazingly cool. Ed assured us that he would take care of us, and he did.

Our front suspension is broke. The owner got us a room at the Hollywood Hilton. The next day we found out our car would not be ready until Monday.

We are staying with relatives in Santa Clarita. She and her boyfriend have a wonderful house and treated us well.

Disneyland was wonderful...

... but the crowds were not.

I know, the heat, the kids, a lot of ground to cover can make people really cranky. That is no excuse for people to cut in line in front of us the way they did. In trying to get through the crowds people kept cutting us off.

There were not a lot of rides that E wanted to go on. He does not like fast, roller coaster kind of kid. That helped us avoid many long lines. "Finding Nemo" was our longest wait. Even though there was a seperate line for wheelchairs, only one wheelchair was allowed through per sub. Since I am able to walk, I was able to park my scooter and walk down the spiral stairs into the sub. It was not easy, but it was worth the effort. E and I really enjoyed the ride. I tried to convince Jodie to the special theater showing of what people on the sub see, but she worried that E and I would have to wait for her.

The Disney "Cast" were all so helpful. They helped us on and off the tram, other rides and lifts throughout the park. I saw a young lady with cerebral palsy like mine. She was pushing her walker, moving right along as she left the park. I applaud Disney all the way around for their incredible respect and treatment of those of us with disabilities.

Tuesday, July 17, 2007

Motel California

We made it to the Anahiem Hills Best Western. Per my AAA travel search for accessible rooms near Disneyland came up with just 2 motels. I think I somehow got Anahiem Hills in the search rather than Anahiem.

We got to the room. The tv remote did not work. No bars in the bathroom, no accessible shower for Jodie. The wall air conditioner was unplugged with a note saying not to use, but to use the central air control. We obeyed the note...and we suffered...the central air did not work.

We had planned on spending two more nights there. We decided not to. Jodie spoke with the manager on the way out. He was upset when Jodie told him that the air did not work. We should have ignored the sign and should have used the wall unit. Totally incredible!

We are now in a very accessible, nice, Comfort Inn just a few blocks from Disneyland.

Where's the diesel?

We drove Jet White down from Gresham to Anahiem. We arrived last night after two days of driving. We spent Sunday night at a nice Best Western in Lodi. We were on the Santa Ana Freeway (I-5) nearing Anahiem when our fuel gage hit empty.

We exited the freeway and we were in Norwalk, CA, searching for diesel. We found a few gas stations, but none had diesel. Most of the station attendents here are Spanish speaking, but we were eventually directed to a station with a diesel pump. We found it. It was full of cars. To get to the diesel pump from the one street I would have had to drive over a curb. I had to go around a large block to get in. We were only allowed 15 gallons, but it got us back on the road.

Did I mention that we were all hot and irritable? That made our adventure even more fun!

The attendent did not understand my request for directions to I-5. I should have said the Santa Ana.

We eventually found I-5, missed the exit for CA-90, turned around, and made our way to our motel in Anahiem Hills.

Saturday, July 14, 2007

Our Big Rig.....

Eighteen feet long, eight and a half feet tall. Our new (slightly used) 2006 Dodge Sprinter. I want to call her Jet White, but the family wants BC JET (Bonnie, Clyde, Jodie, E, Troy). Bonnie and Clyde are our dogs, Terrier/Dachsun mixes.

We bought the van 2 weeks ago from the wonderful folks at Access Mobility Systems in Edmonds, WA. We have a full ADA compliant lift, and we can fit both scooters inside. It handles well for being so big, and it is nice not to be hauling one scooter inside and one outside...with our tail dragging.

Jet White has presented some challenges. It is a diesel. I wanted to get the oil changed, so I went to our local Oil Can Henry's to see if they could change our oil. We have been going there for years and they have been really nice to us. The manager came out and told me they could change the oil for us, but they don't carry the filter. He said that if we bought our own filter, they could change our oil.

I went to Thrifty Auto, a auto supply store near work at lunch to get the oil filter and an air filter. 2006 Dodge Sprinter 2400 turbo diesel. The had the air filter, It was not in stock, but they ordered one for me to pick up the next day. I picked up the oil filter the next day. E and I went to Oil Can Henry's after work. It was the wrong king of oil filter and the air filter was way too small.

I get flustered at this point. My cerebral palsy affects my speech in such a way that I can communicate well with people who know me, but with people who don't know me it is difficult because they are apprehensive of me, and I get nervous, making it harder for me to speak and be understood.

The lady at Thrifty Auto seemed to understand me when I explained what kind of van I had. The guy I encountered the next day was not quite as nice. I gave him the receipt I had and said I was back to pick up a oil filter. He came back with a air filter. No, I need an oil filter. He seemed a bit flustered, but he looked again and came back with a cannister oil filter.

Oil Can Henry's changed our oil, but said that we needed a cartridge oil filter, instead of the cannister.

Tuesday, July 10, 2007

Social model of disability - Wikipedia, the free encyclopedia

Okay, so I have been disabled, physically challenged, or whatever you want to call it, my whole life.

I have not taken time until now to really study disability issues until now with this blog.

I have been coming across these two models of disability.

Social model of disability VS. Medical model of disability

There is value in each model, but the social model seems to me to be the glass is half full model, versus the glass half empty medical model.

The social model focuses on removing barriers so that the disabled can more fully participate in life. Everybody shares the weight of disability.

The medical model puts the weight of disability on the disabled individual and their doctor(s). Finding a cure, making life easier with medicine or adaptive equipment.

As with most other issues, I see both sides. I would love it if a cure came along someday that would take my cerebral palsy away.

In the meantime, I like having barriers removed for me - my disabled parking, the button that opens the door for me at work, etc..

Sunday, July 08, 2007

Women's and Gender Studies Blog: Helen Keller

I am a huge Helen Keller fan. I did not know that she helped found the ACLU.

Here is a great bio in a nutshell:

Women's and Gender Studies Blog: Helen Keller

I love her quotes.

Teacher aide with life experience...

The main thing I wanted as a disabled student in school was hope for my future.

A teacher's aide with Down Syndrome.

The Times-Tribune - Teaching by example

I did can do it too.

Such a beautiful role model.

9-year-old with cerebral palsy and her 1,200 lb. pet

A 9-year-old leading a 1,200 pound steer...from her wheelchair... 9-year-old with cerebral palsy shows what she's made of - Fri, Jul 6, 2007

Kiwi rower...

Gary Endacott, a kiwi rower with cerebral palsy, is on his way to international competition.

TV3 > News > News Display

Gait Analysis

Using medical technology to help kids walk.

Motion Analysis Helps Teen With Cerebral Palsy Regain Ability To Walk

Thursday, July 05, 2007

: : Darius Goes West - The Movie : :

Darius Weems has Duchenne Muscular Dystrophy. He is seeing the country with the help of friiends and is trying to convince MTV to Pimp his Ride, his wheelchair.

: : Darius Goes West - The Movie : :

Per Debbie Schlussel's blog, MTV turned Darius down. Very sad to turn down such courage and exuberance for life.

Jodie is a huge Jerry Lewis fan. Our TV is on from its start through it's entirety. MD is not our disability, but many of the challenges we face are the same.

Kids like Darius are braver than we are. We have old age to look forward to; Darius does not.

Live on Darius!

To the dogs...

Who would have guessed--dogs trained to withdraw money from atms for the disabled.

Pretty cool...but a dog smart enough to know a PIN...might they be smart enough to take the money and run?

Wanna Know: Dogs Can Get Money From Cash Machines (ATM) For Disabled Peoples

Tuesday, July 03, 2007

Denied Service for using her feet

Interesting story. This lady was twice denied service at McDonald's for using her feet as hands.

She is driving with her feet; her ability to use her feet as her hands should have been obvious.

WHEELIE CATHOLIC: Illinois woman sues McDonald's after being denied service due to disability

Sunday, July 01, 2007

Where they stand....

Interesting answers from the candidates regarding disablity issues.

The Roving Activist’s Blog » Blog Archive » Candidates’ answers to our questions

A dreamer, a governor, and a lawyer...

I like what the dreamer said...

Name the Big White Rig

We drove back up to Edmonds, Washington yesterday and picked it up.

We got the white 2006 Dodge Sprinter, which is really a Mercedes Benz. We have a Benz!!

Bill Scott and the rest of the team at Access Mobility Systems are very first class.

Stepdad John drove it home for us. I want to drive it locally to get use to it.

The lift is so quiet! Bill said a good lift does not make noise.

I drove it last night. It is so big, a different driving experience. It is a diesel. I know I will get use to it.

Getting into it is a bit of a challenge. Jodie is using a stepstool for now.

What should we name it?

The Wittren Mobile....Big Rig....Big White Hope....

Wednesday, June 27, 2007

New hope for CP

New Medical Technology: Lifesaving and Life-Enhancing : 6 More Medical Marvels:

"In the study of 208 babies, only 44% who received cooling died or developed a disability, compared with 62% of those who received normal care. 'This is the most promising treatment we have today,' says study author Seetha Shankaran, MD, of Wayne State University, Children's Hospital of Michigan. "

happy birthday helen keller...

happy birthday helen keller - Word Freaks -

"Helen Keller said, 'I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.'"

More quotes from Helen Keller.

Wish I could do that!

Very cool video:

Disabled Break Dancer - Lazy Legs Dancing Video

Cost of War

The cost of a fallen soldier vs. a disabled soldier - $100,000 vs. $6 mil?

Economist's View: The Long-Term Costs of the War in Iraq:

Disabilities FAQs

An interesting federal website on its infancy:

Disabilities FAQs

Disability in TOL Moldova

Disability Means Inability - Finale at TOL Moldova

Moldova is a country in Eastern Europe by Romania.

This article is an interesting insight into the challenge of bringing accessibility to a young democracy (independent since 1991).

Lack of funds translates to lack of accessibility.

A plea for bus manufacturers and building landlords to bring about accessibility as they can. Do the right thing without laws to force the issue.

I think of my disabled parking spot at work, and the button I push that opens the door. I feel spoiled.

Tuesday, June 26, 2007

Idiots in New Jersey not allowed to vote...

A serious issue as to whether the mentally should get to vote, but this made me chuckle:

"New Jersey may put on the November ballot an amendment to the state's Constitution to replace language forbidding an "idiot or insane person" to vote. Advocates for the disabled want those words removed but worry that replacement language is so vague it could be unfairly restrictive. They want to allow people to vote if they can supply information for a voter registration form."

Domnijoe Pets and Art - I guess it's the Insane people who get bastards like this politician into office....

Cerebral Palsy: Hope Through Research: National Institute of Neurological Disorders and Stroke (NINDS)

These stats for cerebral palsy surprise me:

800,000 adults and children in the U.S. somehow affected by CP

10,000 babies each year will develop CP

Cerebral Palsy: Hope Through Research: National Institute of Neurological Disorders and Stroke (NINDS)

This one surprises me: The percentage of babie who will develop CP has remained the same over the last 30 years.

You would think with all the medical advances, the incidence of CP would have gone down.

The Connecticut Post Online - Local TV show profiles disabled

"Able Lives" is a show on public television in Connecticut that showcases the disabled. Not in superstar fashion, but just as they are.

The Connecticut Post Online - Local TV show profiles disabled

I think it is a wonderful idea for the public to get an idea of what the disabled go through on a normal basis.

Education and understanding goes a long ways toward breaking down the walls.

Monday, June 25, 2007

Running the slides at church...

One service every month or so at our church I serve as the person who sits at the laptop computer during the contemporary service at our church and advance the slides.

It seems like a simple task...and, it is. Just hit the space bar to advance the slide, or click on the right slide.

But, with a CP brain such as mine, it can be a challenge.

Some verses to praise songs can be sung two or three times. Hit space bar, screen advances, but the last verse is being sung again. The external mouse, if it is hooked up, is too small for me to handle with any kind of accuracy.

I have learned to use the arrow and 'enter' keys to get to the right screen. But yesterday, I kept getting confused.

I am a tech geek. I am the one who built and maintains the church's website. I should not get confused by a computer slide show...but I do.

I arrow down to the right slide, then I hit 'enter'. All is well.

I keep hitting the space bar to advance the slides. All is well, until a slide is repeated and I have already advanced the slide.

I have to start thinking about what I am doing; that is where my trouble begins.

The highlighted line is the slide that appears overhead, but the slide that appears on the computer is the one after the highlighted line. And, since I had been using the space bar for a while, the line where I last used the arrow keys is still highlighted.

So, I advance the slide too far and I need to go back. I hit 'enter'. Instead of being at the slide I want to be at, I am three songs back where I last used the mouse.

I want to chuckle at myself, but people are looking at me. Any misstep at the computer and dozens of eyes look your way.

The screen where the slides appear use to be easy to see whether people were standing or seated. A couple weeks ago we were all surprised when we entered the sanctuary and all the pews were turned 90 degrees. It was hilarious -- all of us trying to find our regular seats -- that weren't their anymore.

The projector and screen have not been moved. It really could not be done easily. Most people get tired of craning their necks to see the screen. They follow the songs as printed in the bulletin instead of following the slides on the screen.

Only a handful of people, including my dear Jodie, are following the slides on the screen.

I am having a CP moment, doing the simplest service duty -- pushing buttons. I want to laugh, I want to cry.

But I don't. People are looking.

I hope God finds something easier for me to do in heaven.

Sunday, June 24, 2007

Team Effort

This story reminds me of my days as a "pusher".

The Tribune - News

Norma is blind and Vicki is paraplegic. Change it around. Vicki can see and Norma can walk.

Together they can take in and enjoy the Greely Independence Stampede.

At Holladay Center, a school for the disabled that I attended as a child, I was enlisted to push a wheelchair when my class went on field trips. The wheelchair served as an aide in my walking, and I served as an extra ambulatory body to help a classmate in a chair get around.

And....being needed and useful is wonderful therapy.

Robot Legs

Interesting contraption. So, what advantage does this have over a wheelchair or scooter?

Robot Could Help Disabled to ‘Walk’ - - Assistive Technology News Website - Robot Could Help Disabled to ‘Walk’ - Assistive Technologies and Assistive Devices for people with a disability:

One possible advantage could be height. When I am in my scooter, people don't see me because I am below eye level. When I walk, people cut me off because I am slow. Maybe, with fast robotic legs, people would see me and I could cut them off?

I'm dreaming again...

Saturday, June 23, 2007

Crip Chronicles: Disability Identity

Interesting thoughts on disabled identity.

Crip Chronicles: Disability Identity

I don't consider my disability as the main part of my identity, but I know that people who don't really know me do.

When I meet someone for the first time, I know that my cerebral palsy is what they see first. Usually after a brief conversation, people realize that the cp affects my body and not my brain, but sometimes they don't.

Sometimes it matters to me what people think of me, sometimes it doesn't. It depends whether I am only dealing with someone in passing, or if I will be working with or dealing with a person for awhile.

What bothers me is that people like to portray me as being really good at whatever to makeup for my disability, as if they balance each other out.

I'm not too hard on people for this tendency. The checking out of each other probably goes beyond disability.

And then there is the issue of disabled people checking each other out. What set of disabilities does that person deal with? Do they have a better way of doing things than I do? We can be way more critical of each other than the non-disabled are to us. I need more self-esteem.

Union Leader - Church dismissal has mixed reactions - Sunday, Jun. 24, 2007

Interesting follow-up to the story regarding a mother and her disabled daugher being asked to leave a church service.

Union Leader - Church dismissal has mixed reactions - Sunday, Jun. 24, 2007

Slideshow of our current ride...

Friday, June 22, 2007

Our Ride

Jodie and I can get around without using out scooters. Jodie uses forearm crutches. I can free walk.

As a kid I rarely ever used a wheelchair. Sometimes when my family would go to a zoo or a theme park they would rent a wheelchair for me because I didn't have the endurance or speed that the rest of my family had.

Jodie use to free walk around the house when we first got married.

Age does something to all of us. I had back surgery for a herniated disk back in 2001. I used a walker in my coming back after the surgery. Jodie and I have both lost the endurance on our feet that we once had.

With our son, Jodie and I decided that we wanted to keep up with all our son's activities. It was time for us to get scooters.

Our doctor wrote a prescription for me to get a scooter. In order for insurance to help us in getting a scooter, we had to prove that I could use the scooter in our house. It seemed funny to us that they were not interested in helping us become more mobile outside the home.

So it was after we got the scooter and it came time to get my scooter in our Chrysler Voyager minivan, insurance had no interest in helping us accessorize our minivan so that we could transport my scooter.

We tried a metal ramp. It was very heavy for me to handle. I fought with it and was able to get my scooter in the back of out minivan a couple times.

A day came when I was running the scooter up the ramp into our minivan at home. The front tire of the scooter went over the side of the ramp. I had to call Uncle Randy to rescue me.

We started looking for a lift for our minivan. We found a used Braun lift for about $1100. It looks something like this.

When we got Jodie's scooter awhile later, we had to get a second lift. With out son, we had to hang onto a back seat. I don't know if both scooters would fit in the back with no seats...but regardless, we had to have a seat.

The only other option was to get a second lift for the back of the car, outside. We found a Silver Star Lift for $1600.

I will try to get pictures of out current van to post in the next couple days.

This setup has gotten us by for the last five years or so. We don't always haul both scooters together. We do haul them both on the weekends when we do stuff as a family. Our vehicle seems to handle the weight, but I think it has been hard on the transmission (it has been in the shop for that a few times), and the breaks have had excessive wear.

With Jodie's scooter riding outside the van, and all the wonderful rain that we get here in the Northwest, we have had to carry a towel with us when it rains. I know, we should have invested in a cover for her scooter. I never knew how we would secure the cover, and, well, we never really looked into getting one.

See, our outside lift swings away from the hitch so that we can open the back hatch of the van. A metal bar extends about six inches from the hitch; it supports the lift swings closed. When I load my scooter in and out of our minivan, my scooter hits the hitch that holds our outside lift.

We have been looking off and on for the last year for a rig that we could get both scooters inside. We found a full-size van with a side lift. The salesman said we could get both scooters inside. I rode my scooter up and into the van. There was no room to get both scooters in there and for Jodie and I to maneuver around them to get to the front seat.

After doing a lot of googling, I became very interested in the Dodge Sprinters, and I found a place in Edmunds, Washington that sells them accessorized for the disabled -- Access Mobility Systems. Jodie, E and I made the 200 mile drive up there a week ago.

The Sprinter was very nice, and it had plenty of room for both scooters. We were interested in the 2006 Sprinter that they had. We filled out a credit application...and...well...