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

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 there...it'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 them...it 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.....


CelebrityX

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