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

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 it....you 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...

Postbulletin.com: 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....