Archive for the ‘family’ Category
So did you hear the one about the woman in the wheelchair in the crowd at the paralympics. Its not a joke. She was told she could not sit with her family. Apparently the people in charge are planning the event did not plan for disabled people sitting with walkies? Click here to read the entire story. I don’t even want to get into it. It just defies logic, and I don’t do well with that.
For my 200th post on this blog I want to tell you about my brother. I talked about him long ago on this blog, how when we were kids he, though not disabled himself, taught me how to pop wheelies on my chair, and he rigged my wheelchair with systematically placed life preservers, and installed a ramp at the end of the dock whereby he would go flying off the end of the dock into the Mississippi River. Yes…in my wheelchair. I never did it of course.
Ever the innovator in wheelchair technology I just wanted to note that in the course of a 15 minute conversation this weekend, he pointed out no fewer than four improvements he could envision being made to my Quickie. Not sure how many of them he felt confident in his own ability to install. At least one. I will not discuss what they are until we see where this goes. Never know. Quickie may want to put us to work. Suffice to say they would make recreation in a wheelchair much more mobile and convenient in various ways.
Prenatal testing encourages abortions? I don’t know, Rick Santorum, I think you’re a bit off the mark on this one. I think, first and foremost, it gives parents-to-be the opportunity to know what they are up against when their baby comes if he or she does have a disability. It gives them the opportunity to plan financially and prepare themselves emotionally for all that is going to be required of them to give the baby the best life they can provide.
And second, I think that by saying prenatal testing encourages abortions, Santorum is showing us his true feelings toward people with disabilities. I believe him when he says he is 100% anti-abortion. But to suggest that when a parent finds out their child will be disabled that they should for some reason want to terminate the pregnancy, well, that tells me something about Santorum’s mindset, to tell you the truth.
Liberals who consider themselves “pro-choice” are not “anti-life”. They are not going around looking for a reason to have an abortion. That seems to be what Santorum is trying to suggest here. But it doesn’t add up.
In a recent post I made reference to “support groups” amongst people with any given disability, and how I hardly ever met anyone with my disability, spina bifida. Interestingly, I have been fortunate to make connections with some really interesting people this year already, including a cousin of mine who I did not know I had until a few years ago. Even since learning of his existence, I haven’t seen much of him because he lives in another state. I added him to my Facebook friends list and occasionally commented on his posts, but really didn’t get to know him. But then recently I was flipping through some pictures of him on his page, and I found one which showed clearly that he was in a wheelchair. I did not know him to be in a wheelchair, and nobody ever told me anything had happened to him. So I asked him. And he told me he, like me, has spina bifida at the L-2 level.
Naturally this shocked me that he had spina bifida. Why hadn’t anyone in my family told me this? It would have been nice to know that I had another person to talk to about it. Turns out he himself did not know he had spina bifida until he was 21 when he started having medical problems. He’s had his ups and downs and has had times when he could still walk with braces, but he does use a wheelchair.
We both had doctors who told us (or in my case a doctor who told my parents) that our case would be much worse than it turned out to be. It is encouraging, and horrifying at the same time when you see how wrong doctors can be. But they’re only human. One doctor said my life would not be worth living, and a doctor told my cousin that he’d be paralyzed from the waist down by now but his paralysis is really just large areas of numbness in his bottom half.
Ever since finding this out about him, it has been great exchanging war stories – how we both struggled with math just as the doctors said we would (though I think I was much more hopeless in this category than he was). But mostly we have discussed medical problems. Songs of our scars, ghosts of operations past. And he told me that he will be having an operation in the future which will put him in his wheelchair for several months. I let him know about how I “did my time” when I was in a body cast or had a broken leg at different times as a teenager. Made some suggestions on how to make the time go by and avoid letting your spirit hit the bottom of the barrel.
As I wrote LONG ago in this blog, many people (including John Mellencamp) have spina bifida but can walk. But I never knew of a case where someone did not know they had the disorder until adulthood. It’s been nice hearing about yet another of the various experiences people have had with spina bifida, and I have been happy to be able to give my cousin advice. I look forward to continuing our correspondence because I am sure we both have something to offer each other.
It has come to my attention that on February 22, HBO will run a film called “Raising Renee”.
The documentary is an account of a woman who elects to care for her developmentally handicapped adult sister. My wife is a care giver for seniors. She can’t tell me everything she does during her day due to confidentiality promised to clients. And though this is not the same thing as caring for an adult with a developmental handicap of course, I do have an idea of how hard this job is.
I will be watching on February 22 and my hope is that it opens up a lot of eyes as to the task we face as a nation in getting some of our most overlooked citizens the care they need. I will try to provide a film review after the program airs.
For those of us with disabilities, it is easy to get down on ourselves for what we don’t have. Abilities, skills, functions. Whatever. If you have recently experienced this feeling of dejection, this observation recently made by my wife is for you.
We were thumbing through a book of “useless facts” when we stumbled upon something that turned out to be quite useful. “Leaches have 32 brains,” it read.
To which my wife blithely replied:
“How come they haven’t taken over the world yet?”
“It just goes to show its not the brains you have, its how you use them.”
“I mean they’ve got thirty two brains and all they’ve figured out how to do is suck.”
All this before I had mustered up the wit for a single observation of my own.
Yep, it’s official, Treadmarkz will be in hard copy for the first time ever when one of my stories appears in New Mobility magazine’s June issue. Reserve your copy now! I will be published under the name Forrest Dailey. It is a story which demonstrates that we are all much more alike in our experiences than we think we are.