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

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.