Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.
Wednesday, June 27, 2007
"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. "
"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.
Economist's View: The Long-Term Costs of the War in Iraq:
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
"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)
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
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
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
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 Could Help Disabled to ‘Walk’ - Axistive.com - 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
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.
Okay...so I need more self-esteem.
Union Leader - Church dismissal has mixed reactions - Sunday, Jun. 24, 2007
Friday, June 22, 2007
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...
Disability Studies, Temple U.: Perfect Ain't Cool
My greatest fault is being a perfectionist. My body does not follow along. And lately, I wonder if my clear thinking has been affected by my meds. A usual problem at work has become seemingly unsolvable. The people who usually help me keep tossing policy at me. The issue is not getting solved and I have been getting stressed!
COOL AIN'T PERFECT
PERFECT AIN'T COOL!
Wednesday, June 20, 2007
Union Leader - Church asks mom, disabled child, to leave - Wednesday, Jun. 20, 2007
People were loudly singing and praising God. So was Teagan.
My church welcomes all the kids with all their noises. During sermon and prayer time, kids who are having difficulty keeping quiet are taken out of the sanctuary by their parents...but this was not a quiet time!
God bless you Teagan!
Christians, wake up from your coma and remember what it's all about.!
Tuesday, June 19, 2007
Poynter Online - How the News Media
Handicap Those with Disabilities
Feel-good stories are nice. A disabled person overcomes the odds.
But why must the story be about overcoming the odds? I like the last line: "Tell a story "less (about) overcoming and more (about) 'just being.' "
I was the subject of three media stories when I was in junior high school.
I wrote a article when I was in the 8th grade titled "Life Through My Eyes."' I told about my life as a person with cerebral palsy. I haven't seen the article in such a long time -- that's nearly 30 years ago -- I just remember I told my story and the article was first in my school paper, then we re-published in a local medical journal.
The local newspaper, The Oregonian, did a article about me shortly after that, the impetus for that article being the article I had written. It was a feel good article, but it was not over done. It gave people a better picture of me.
The other story that was done of my was a pure puff piece of the new adaptive P.E. class I was in. It was on local tv news. For the camera I was put through a maze of activity. I was offended because most days adaptive p.e. was volunteer moms tossing a nerf ball at us, but for the camera I did activities I had never done before and never did again. Pure PR and I was the prop.
I don't mind being part of a story about me where I am the story (the real me), but I don't want to be a "feel-good" about another disabled guy who gets up in the morning.
Sunday, June 17, 2007
Go Nintendo » Blog Archive » Wii helps child with cerebal palsy have some fun with sibling- What are you waiting for?
Might have to see if my son would part with some of his money so I (cp dad) could play baseball with him...
So, what is "self-immolation"? Suicide by fire is what I found.
Kunduz is a city in NE Afghanistan.
Disabled vets are angry that their commanders are living the life of luxury, while they have no place to live. Vets here in the States often don't get the treatment and benefits they need, but threatening to set themselves on fire is not something I see happening.
Different culture? Greater desperation?
Saturday, June 16, 2007
Neighbors laughed and taunted the child. Doctors and teachers have found him to be highly intelligent.
Headlines | Boy born limbless has defied odds
He lies on his stomach and holds a pencil in his mouth to write. He's only been in school for two months and he can write his name.
I am happy to see that the education office wants to send Jobs teachers for training in special ed:
'"We also feel the learning environment should be barrier-free, friendly to accommodate his special needs and he should be trained on activities of daily living to make him self-reliant," says Kemboi.'
"You're so inspirational..." Those words make me cringe. I've had to fight against prejudices and barriers with my cerebral palsy to get where I have gotten in life. I work with what abilities I have, to get as far as I can. The love and mercy of family, friends and strangers help me along. Anybody would do that. What is inspirational about that?
Job, a six year old boy with no arms or legs in a peasant family in Kenya. Writing and drawing with his mouth. Knocking a soccer ball around.
The parents could have written him off as a problem, but they had the faith to name him Job.
That inspires me.
Thursday, June 14, 2007
One in seven in the UK are disabled. A source I found (CODI) says one in five Americans are disabled.
I find strength in knowing I am not alone.
Lady Bracknell says:
"We are not brave. We are not special. We are not tragic. We are not heroic. We are not “an inspiration”. We are not the Bogey Man. We are not objects of pity. And we are not the living embodiment of our impairments..."
Some days I would prefer to hide away, rather than out in the world trying so hard to be who everyone thinks I should be --- smart, cheerful, not complaining. Probably more my own attempt at perfection than my attempt to overcome my disability...or are the two the same thing?
Matthias Media Briefing Web Extras: Then shall the lame man leap like a deer
I don't think my disability is a result of sin. If God wanted to exact the price of sin from us, we would all be dead.
I have always gained strength from the way Moses pleaded with God regarding his poor speaking ability. God says, "Hey, I made your mouth." We are not disabled in God's eyes; He made us!
We do live in a fallen world. I think the imperfection in all of us attests to that. My cerebral palsy does not make me any more imperfect than anyone else. His grace is sufficient for each of us.
God does not look at how perfect or imperfect we are; He looks at our heart to see if we are trying to become like Jesus.
God is bringing His creation to order, one heart at a time.
Wednesday, June 13, 2007
Disabled in North Korea Confined to Homes, Expelled From Capital
Families expelled from Pyongyang for having a disabled child. This is the most extreme treatment I have found in my searching around the internet.
In South Korea, employment is very hard to find for the disabled, according to the article, but they don't face the ridicule and mistreatment that those in North Korea do.
When I attended Oregon State University 20 years ago, a friend of mine who worked at the ESL center coaxed me to be a conversant with a student who was trying to pick up the English language. I met with a guy from South Korea a couple times a week. He was a super guy. I remember he had all these hard science classes, but his most difficult class was writing 121.
I remember he had a desire to help change things back at home. I remember worrying about my speech impediment, whether my English would help him. It never bothered him. He seemed to be as interested in figuring me out as I was in figuring him out.
I may have been the first disabled person he ever got to know.
The State | 06/14/2007 | Walgreens makes special effort
A wonderful way to step up!
Craig was from Virginia and had cerebral palsy like myself. Bob was deaf and very athletic. We got to go sailing at Tom's Cove, a large area of water that averaged about 3 feet in depth.
Bob was doing the work. He handed me the thingy (rudder?) to hold as he worked the sails. I just had to hold it. I let go. I just remember Craig and I treading water in our life jackets, the three of us laughing, and Bob getting the sailboat upright and informing me that all I had to do was hold it.
Here's a couple of pros:
APP.COM - DISABLED SAILORS' DESTINATION: CHINA | Asbury Park Press Online
Trucker Who Pushed Wheelchair Not Charged - News Story - KPTV Portland
So, there really is a Paw Paw, Michigan?
Tuesday, June 12, 2007
Scope: See the person, not the disability - Adpunch
I wonder if there is any such awareness campaign here in the States?
Scope is an organization that provides services to the disabled in Victoria, AU.
Casey Station Webcam - Australian Antarctic Division
There is a drug that people with my kind of cerebral palsy. Molly said that most people have a difficult time when they start taking it because of how sedating it is. If they get through that initial period, the drug works very well, but most people don't make it through the initial heavy sedation.
As for the pulmonary doctor's assessment of my scoliosis making my ribs cave in on me and putting my in great pain in about ten years (when I'm in my 50's), Molly said that I am so active that I should not need to worry about that happening to me until I am in my 70's.
I suppose nobody really knows, but I am going with Dr. Molly on this one.
Sunday, June 10, 2007
AP Wire | 06/10/2007 | Disneyland's redesigned sub ride accommodates disabled guests
This accommodation is interesting in that the submarine is still not physically accessible to the physically disabled, but they went to great pains to photograph the entire submarine experience in high def and to show int in a theater that looks like and observation post.
We are going to try to take E down to Disneyland this summer. It is nice to know that they have accessibility high on their priority list.
Saturday, June 09, 2007
The Dr. looked at my spine to check out my scoliosis. I have always had scoliosis. My main disability is cerebral palsy. I know that my spine has a 'S' curve, but I have never had pain from it.
She was surprised that I have only recently begun taking a muscle relaxant. I also told her about the nsaid pain releaver I have been taking. She was not knowledgeable about that drug. She said to talk to Dr. Molly about that one.
The dr. thinks that my chest pain stems from a combination of my scoliosis pressing in on my insides and my muscle spasms from my cerebral palsy. She said that if the combination of medicine I am taking works, to keep taking them. I think she called it therapeutic treatment.
She seemed somewhat surprised that I was not in more pain. The Dr. told me that in ten years, with the curvature of my spine, my ribs will be digging into my lungs, that I will be in pain, and that I might require oxygen.
The good Dr. watched me walk, then commented how they way I hold my body, leaning to the right, is bad for me. I will try to posture myself better. She mentioned using braces. I used them as a kid. They were so restricting, and not corrective. A day may come when I need them, but until then I like my freedom.
Sobering words. Hard to know if it will happen that way. Is it statistically possible or probable that it will happen, based on information from a medical website, or is it really going to happen?
Jodie and I went to the car. I said, "You know, we ought to raise H for the next ten years before our disabilities get worse and we can't." She reminded me that doctors never thought we would make it as far as we have. She also agreed that we should do all we can before we lose the abilities that we have.
I suppose a doctor's duty is to tell us the truth as they see it. On the surface it seems like poor bedside manner. Ten minutes is not enough time for that.
I'm not going to worry about ten years from now.
Thursday, June 07, 2007
Wednesday, June 06, 2007
Richard III, with Disabled Actor as Star, Begins July 11 (BroadwayWorld.com)
Henry Holden is an actor you uses crutches for his mobility. Richard III was physically deformed, and it the 1400's that was enough to mark him as being evil.
Jodie and I were both irritated when we found out that Laura Innes, who plays the part of a doctor who uses crutches, really is not disabled. She does not use crutches in real life. We always felt that there had to be actors out there who were truly disabled who could play the part of a disabled doctor without pretending to be disabled.
Henry Holden is part of a group called DIME, Disability in Media Everywhere, is a group that promotes the presence of the disabled in mass media.
Daily Express, Sabah, Malaysia -- News Headlines
Only verification of disability is required.
300RM - I did the conversion and got $87.71. Does not seem a lot. Maybe that would go further there than it would in the States.
The gesture is wonderful!
Saturday, June 02, 2007
Jodie and I wanted some soda's. We had E go buy us some. He came back with two large Pepsi's. E told us they had no lids and no straws.
Everyone who knows me knows that I use a straw for all of my drinks. My hands are shaky due to my disability, cerebral palsy. I drink everything from coffee to beer (when I drank beer) with a straw. Some waitresses still warn me that the coffee might be too hot to use a straw with it, but most seem to know that if I am asking for a straw, I know what to do with it.
At times I have Jodie or someone else who knows me help me drink when we can't get a straw. With the quart-size paper cup full of Pepsi, though, this would have been impossible.
My sister-in-law did some scouting around and found the slirpy vendor who said she could get us an extra slirpy straw, you know, the kind with a spoon at the end. This crisis was solved.
We have come up against this before, I think at a fair, where they had no straws. I did some googling to find out possible reasons as to why some venues are not offering straws and lids anymore.
-straws and lids are not recyclable per several websites I found.
-straws are not given out at zoos because they are a danger to wildlife. The Oregon Zoo has this no straw policy.
-one site suggested that straws are not allowed in ballparks because they might be used as spit-wod shooters.
-another site suggests that straws could present a choking hazard to young children because of a chance that a piece of crushed is could come through the straw and lodge in there throat.
My money as to why Volcanoes Stadium has a no straw, no lid policy is because they are not recyclable.
It would be nice for places who have a no straw policy to have a stash of a couple for people who really need them, but I don't think it is practical for them to worry about that.
I need to find a way to carry straws with me. They get too mangled when I put them in my pocket.
I use to carry a couple straws on me inside of a travel toothbrush container, but sometimes the straw got crumpled inside and were not usable when I needed them.
I've often thought that I need a man purse! Just a small bag to carry around that I could stow a couple straws, maybe some real silverware for those times that the flimsy plastic kind is all that is available.
Murphy's Law usually applies. I have gone places where I thought a drink would be offered, so I grab a straw from the small bag of them that I keep in the car. I go in, a drink is not offered, so I stuff the straw as discreetly as I can into my pocket. And vice versa, I go in someplace and a drink is offered and I need too ask if they have straws. People usually either don't have straws, or if they do, they are burried somewhere. I get embarassed and unomfortable when people need to go on a treasure hunt just to accomodate me!
A man purse, or a pocketable durable straw that I could use in a pinch. I will need to do more googling!