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

Monday, May 28, 2007

What's an actuary?: Disability Benefits in Sweden

What's an actuary?: Disability Benefits in Sweden

The lady out on disability for being allergic to electricity made me laugh.

Ground Report | Neil Young - The Bridge To Ben

Ground Report | Neil Young - The Bridge To Ben

I am a Neil Young fan. "Harvest Moon", and "Rust Never Sleeps" are in my tape/cd collection, and with my Zune pass I have been listening to his newer stuff.

Back in the early 90's I was working at the child welfare office in Hillsboro, Oregon. The second floor of the office building I worked at was just our office, but the first floor had various offices. One of these offices had a firm with whom Neil had some business with.

Neil Young was standing on the front steps of our office build talking with a guy from the firm.

Bobbie, a coworker/friend of mine ran down and got his autograph. I don't remember what she had him sign, but I remember her saying that he was really cool about it.

Bobbie has paralyzed vocal chords from a car accident in which she was a passenger years ago...when seat belts were not really a big deal. We both worked in support staff with child welfare. We had a ongoing joke that one day we would start a song and dance routine and quit our day jobs. The joke was that I would do the dancing, with my wild cerebral palsy movements, and Bobbie would sing with her sultry sounding voice.

I did not realize that Neil was familiar with cerebral palsy until some time later. At the time I was not as big of Neil Young fan as Bobbie was, and I did not want to bother him.

It was not until some time after this that I learned the Neil Young had a son who has cerebral palsy and that his wife, Pegi, co-founded The Bridge School for kids with cerebral palsy. Neil hosts a annual benefit concert for the school.

Jodie and I attended Holladay Center, a school for the physically disabled in Portland, Oregon, in the late 60's / early 70's. We underwent heavy regimens of physical therapy, occupational therapy, speech therapy. I was able to walk, so I helped push wheelchairs. We were eventually mainstreamed, but both of us highly value the special attention that the therapists and faculty at Holladay Center gave us.

I have always wished since then that I would have said "Hi" to him, that I would have know about The Bridge School and that I could have told him how wonderful his efforts are.

Pegi Young has a album out, and a Myspace page: Her songs sound wonderful! A countrified Barbra Streisand?

Neil's "Old Man" is one of my all time faves. His harmonica sends chills down my spine. I am listening to "After the gold rush" right now. One of these days I will make it to a show.

Thank you Neil and Pegi for brightening the world with your gifts and talents.

My My, Hey Hey...

Saturday, May 26, 2007

Why was Doug on "King of Queens" riding a scooter?

I've been googling for hours to find out more about what was behind the story line of Doug on "King of Queens" riding a scooter in the series finale of the show.

I found a comment:
KofQ had it's moments.Most recently when Doug took to riding a senior's scooter.Hi'freakin'larious.

And another comment on another episode:

An episode I like is when the guys get an apartment above their favorite chinese/japanese (not sure which one) restaurant to get away from their wives and be closer to the restaurant. The guys decide not to go there anymore but Doug keeps it and Carrie finds out when she orders take out because Doug started working there to make extra money to pay for the apt. Then he delivers food to her job riding a scooter and he sees her and leaves the food and takes off! Omigod it was so funny! Classic king of queens!

In my last post, I talked about people using scooters to cruise the Vegas strip out of convenience rather than mobility need. I was not bothered by this, but I told Jodie about this and she thought it was awful. She feels that people who use scooters because they are lazy is real insensitive to people who use scooters out of necessity.

I figure if people want to use it as a convenience, heh, what's the big deal?

Seeing Doug use the scooter for no apparent reasons but to get laughs---I'm not comfortable with that. In the finale episode, the apartment is empty and Doug is trying to sweep the floor while on the scooter. He holds the broom and zips criss cross across the floor in the scooter. The audience is laughing.
Doug is not really sweeping the floor; he is having fun.

It would not be funny for a truly disabled person who had to use a scooter and had a floor that they really needed swept. When my pain level is high and I have to use my scooter, it's not fun to get around the obstacles that are everywhere. It takes determination.

I am a huge fan of humor. The seriousness and pain in this world -- we need all the laughter we can get.

I'm not so much offended by Doug using the scooter and making light of it. I just don't see what the humor is.

Can somebody explain it to me?

Thursday, May 24, 2007

The Strip — on scooters

I don't see the harm.

The Strip — on scooters

If abled-body people want to cruise the Vegas strip using a scooter, where is the harm?

I think it might be an education for them. People look at you different when you are on a scooter -- that is, if they see you.

It's that look of "You poor thing", or "isn't it wonderful what They can do."

Or it's the fact that you are below most people's eye level, it is always you that need to watch where you are going, and not the other people who are criss-crossing in front of you as if you are not there.

A scoot down the Strip might turn into a wonderful education.

Scary Moment

Last week during a baseball game, our eleven year old son was catching. The bottom of the 4th had just started. He called "time". He had to go potty--11 year-old speak.

At the beginning of the season the coaches had told the boys to do their business before and after the game. This was different. As the coach was helping get his gear off, he fainted. Had the coach had not been there to catch him, E would have hit his head on cement.

E was not out long, but it seemed long. Jodie and I made our way over, but other parents asked us to sit down. I sat back down; Jodie started back to her seat, but then went back. Her mom and our nephew were there. A mom on the other team was a nurse. Someone said they saw his eyes roll to the back of his head.

Paramedics came and checked him out. He was dehydrated, but okay. We took him to emergency. A touch of stomach flu, but he was okay.

I have resisted writing about our son for safety reasons. I share this episode only because it showed Jodie and I what a parent's fear really is, and the awkwardness of dealing frightened parents, while other people were treating us as kids that needed to be calmed down.

There is nothing to be calm about when your kid is passed out on the ground.

I was afraid of him seizuring. I had no idea what was causing this, how long he would be out, or what was happening to him.

I was afraid of the unknown.

No harm or insult was meant by the other people around us, I know that.

But people should give us the space to be freaked out panicked parents when circumstances warrant.

Monday, May 21, 2007

Do It Myself Blog

I found this wonderful blog:

Do It Myself Blog

Glenda Watson Hyatt is a Canadian author who has the same brand of cerebral palsy as I have - athetoid.

I like her entry -

Medical Professionals Are the Worst Disablism Perpetuators

Doctors do seem to be really ignorant of disabilities. Book understanding of what disabilities are versus who disabled people are and the realities they deal with are very different things. I suppose we can't expect them to know everything, but when you are in the middle of a health trial, you turn to your doctor for answers. When they look at you as a source for their higher learning, rather than someone they can actually help, it gets frustrating!

Glenda's husband, Darrel Hyatt, has a business: It is a resource for adaptive computer technology. He uses a wheelchair.

Kind of like Jodie and I. Jodie is out front and social; I am a behind-the-scenes geek.

My grandma made Jodie promise her that I would not forget my writing. Jodie really wants to be a speaker.

Maybe one of these days we can follow the path of Glenda and Darrel.

Sunday, May 20, 2007

Disabled athlete's parents take complaints to OSAA sponsors | Local News | | News for Oregon and SW Washington

Disabled athlete's parents take complaints to OSAA sponsors | Local News | | News for Oregon and SW Washington

Come on!

Honor the achievement. Score the kid, keep the record.

As per the KGW website: " Brad Garrett, an OSAA assistant executive director who coordinates the state track meet s, said: "The OSAA in particular and the OSAA executive board philosophically believe the inclusion of wheelchair athletes fundamentally alters the competition.""

Where is the harm to the non-disabled athlete if the records are kept? How is competition altered?

Rules is rules, I work in a bureaucracy, I understand that.

Show us the federal rule that would be broken by including Brandon Caswell's achievement. Explain to us the harm of including all time event records for wheelchair athletes.

Otherwise guys, let's do the right thing.

Toddler in life-support battle dies -

Toddler in life-support battle dies -

Doctors trying to decide when to give up hope. A "10 day notice for patients deemed medically futile."

The Emilio's mother, Catarina Gonzales, never gave up hope. She probably knew her boy was going to die, but why not let it happen is God's time?

I was born with my umbilical cord wrapped around my neck. Oxygen was cut off from my brain. It was not until I was eight months old that doctors discovered I had cerebral palsy. Doctors would not tell my mom whether I'd ever be able to walk or talk.

She could have given me up. Friends said it would be easier that way.

My mom was not wired that way. Catarina was not wired that way.

God places unending hope in the hearts of mother's for their children. Doctors have no right to take that away.

God's grace, God's time, a mother's hope.

Friday, May 18, 2007

Pitcher with CP

Tommy Renda pitches left handed. His right arm is paralyzed from the elbow down due to cerebral palsy.

The story was in the Oregonian. Classic story. Throws 85, opponants underestimate his ability, easy pick-off outs.

Coach Casey of the OSU Beavers (national champs) was so awed by this 19 year old U of Portland Pilot from Hillsborough, Ca, that he asked for his autograph after the game.

Sunday, May 13, 2007

Showing the heart of a champion

Showing the heart of a champion

Blake Shelly and his family attended our church years ago. Time escapes me, because it does not seem that long ago that he was 8 or 9, but this article says that Blake is now 18.

Blake has cerebral palsy like mine, athetoid I believe they call it. His whole body is affected, his arms and legs. He had a fancy walker as a young guy, one where the main part of the walker was behind him and it was open in the front. I was always impressed with him because he moved so fast with the walker, and never seemed timid with the other kids.

I always felt I should have words of wisdom for him, but his optimism and gumption, he never seemed to need my wisdom.

I was always inspired seeing him function so well as a young guy, I always prayed that him seeing me function as an adult with a wife and child would be inspiration to Blake.

Blake was encouraged to be a manager rather than a participant by coaches and friends. He wanted to participate, which he did with grace and the cheers of classmates.

Cheers to you Blake!