Archive for July 2008
A while back I mentioned a movie I’d heard of, “Music Within” and I promised to write more about it once I’d actually seen it. Well here ya go!
I know I am wrong but sometimes when I read a movie review by someone who was not paid to do it, I feel like they are just doing it to show off their taste in “film” whatever the hell that is. Is that worse than people doing it because they are paid to? I don’t know. But I can never seem to get into writing a standard review of a movie, with full-blown analysis of characters and their motives and historical accuracy, narrative flow, etc. I just can’t do it.
So this isn’t going to be a “review” of “Music Within”. Sure it was a great lesson on how disabled people broke the doors wide open into the workforce. But you can read about that in a lot of other places, and frankly I am tired of mentioning the ADA. (So what do I go and do right away?)
Anyway, I have just a few observations on “Music Within.”
What stood out for me, in “Music Within” is that if you really search, or even if you just open your mind, you will find that you have a lot more in common with the people around you than you may think upon first glance. People without a disability may look at this film and see a character with cerebral palsy, played by Michael Sheen, and be startled by a few things:
- He has a crude sense of humor. I think people don’t realize that people with cerebral palsy have the mental capacity to have what is the common conception of a sense of humor. And if they do, they certainly couldn’t be crude and R-rated could they? Yes, they could. And I think this misconception gets applied to many different types of disabilities (let’s say, oh I don’t know, spina bifida). But it’s wrong. Ask my wife. She has to listen to me, for example, when we are watching a movie that I “object” to for any given reason that I make up on the spot.
- He has the capability to be rude, and abrasive. Well of course he’s rude and abrasive and angry and standoffish, he’s afflicted!!!…No…that’s not why. It’s because he’s human. And if you are rude to someone in a wheelchair or not in a wheelchair, they just may choose to be rude back to you. They may choose not to say anything about it, and that may be perceived as letting it happen, or it may be perceived as being above responding. It’s all relative, I suppose.
- He has a sex drive. I know, “duh!”, right? But some people just don’t understand that people with disabilities are sexual beings. The fact is that many people with disabilities, especially paralysis, depending on their level of paralysis, may experience repression to an extent that others simply can not understand, because they do not have the same level of freedom of expression of love, passion, lust, what have you. For some, this repression is expressed through the way they talk to the people they are attracted to, or how they “hit on” people. There are some great examples of this in the movie, where in Sheen’s character openly invites several women to partake in…certain activities with him.
But above all, to all three of these things, I say…Duh, he’s a guy. We’re like that. Crude, bi-polar, sex junkies. Can I get a witness?
Okay that’s a cheap stereotype. I got much more out of this movie than this, but I don’t want to write a book. And I don’t want to pontificate (too much). Take a look for yourself.
In honor of the 50th Anniversary of NASA, I’d like to tell a story of a recent travel of the Time Machine with Hand Controls. You see, I am working with the space-time continuum here, and sometimes things just get a little screwed up. Sometimes the time machine with hand controls gets shot through space and not through time.
Which is how I recently ended up on Mars.
I don’t know if you know this but there are just as many disabled people on Mars as there are here. Only, I was able to ascertain (again, through my vast knowledge of the Martian language) that the governments throughout the planet are so focused on space travel, so focused on studying earth that they have in no way spent any time focusing on building a civilization. That’s why we’ve never seen any evidence of it on photos of Mars’ surface. And along with that, the governments of Mars have also neglected developing technology for the disabled to improve accessibility.
Except for the hoverchairs.
Yes, that’s right, using the same technology they’ve used to build their nifty “UFOs” as we call them, they’ve found a way to avoid any debates over wheelchair ramps etc. But its all just showing off because like I said, they haven’t built up a concrete jungle like we have so I think they are counting their chickens before they’ve hatched a little bit with these hoverchairs. Although I can see how they’d be nice to avoid the rocky terrain on the surface of Mars.
I think they may have went too far with the chairs’ built-in commodes which have a hatch that releases the contents into space. But hey, they probably got that idea from NASA. And it solves the problem of accessible bathrooms. No need for an ADA here.
Except for the issue of equal treatment in the workplace. No problem there either. Everyone on Mars is required to work for their space program. They are serious about finally being able to prove once and for all that there is life on Earth!
Here’s a weird one.
I was flipping through http://www.songfacts.com and I came across “Wonderful Tonight” by Eric Clapton. Songfacts is a site where fans can submit “facts” or, mostly opinions actually, and a lot of misinformation, about any song you can think of. Under “Wonderful Tonight” I found an entry from someone putting forth the theory that “Wonderful Tonight” (one of the greatest love songs of all time, next to “Layla” also by Clapton) was written about a man in a wheelchair and his able-bodied girlfriend/wife. Let’s analyze the lyrics to see if we can’t find a nugget of truth in this hypothesis:
“We go to a party/Everyone turns to see/this beautiful lady/walking around with me” – If the stress and focus is on the word “walking” it could suggest that the person she is with is not, himself, walking. But that is really suspending disbelief, so let’s move on.
“I give her the car keys/she puts me to bed” – This is about a man who is unable to drive. Not able to at all or just as a result of intoxication or fatigue? More and more disabled people are driving, but in the 1970s when this song was recorded, this may not have been so. And the second line may have something to do with a woman physically lifting the man from his wheelchair into bed.
That’s about all I see backing up the aforementioned claim. But the overall theme of the song is a man who is desperately in love with his woman, who “just doesn’t realize how much” he loves her. I am married to a woman who is not “disabled” in the usual sense of the word (She told me herself that she believes that everyone is disabled to some degree), so I can identify with that feeling, the desperation to tell that person how much their unconditional love means to you. However, I would hope that anyone in love has felt it that strongly.
And so, upon deep reflection on this matter, I think that “Wonderful Tonight” is just a regular, boring, good ol’ fashioned walkie love song. Case closed. I have spoken. Turn out the lights. Don’t let the door hit ya.
My wife and I went to the Beatles Bash 2008 in Mantorville, Minnesota this evening. The weather forecast called for cloud cover and probable rain, and it did sprinkle as we arrived, but as soon as the first of two Beatles “tribute” bands began playing, the clouds opened allowing the sun to shine through, or as I told my wife “So God could help pay tribute to His favorite band.” The sun shined the rest of the day uninterrupted.
I don’t “dance” too often but tonight I thought “to hell with it, this is the Beatles…sort of” so my wife and I rocked it out on the dance floor and during one of “George’s” guitar solos I pulled my leg up and played air guitar on it for a brief moment. Showing off really. I was really impressed with myself how unbridled I can get on the dance floor yet able to show everyone around me that they need not worry about getting their legs cut off by my chair.
The two bands were Liverpool Legends and The Cavern Beat. The Cavern Beat was probably more authentic to the sound of the Beatles, but only focused on the band’s early days. They only went as far as 1965, with one song from 1966, “Paperback Writer”. Cavern Beat’s “Paul” had an incredible vocal range, I thought, and emulated the real Paul’s style and mannerisms on stage, as did the band’s “John”. See, each actual Beatle had a very distinctive stance, Paul with his feet close together, legs straight, and John with his knees bent a bit, feet spread apart. Pulling that off, along with the band’s Beatlesque stage banter, the whole package helped the Cavern Beat make one feel like they were “there”. The only inconsistency I saw in this band was that their “Ringo” really did not sound or look like Ringo. But hey, who does?
Liverpool Legends rocked harder, and focused even more on the “banter” and the Liverpool humor, and they covered the span of the Beatles’ entire recording career from old cover tunes through Abbey Road, which was great, but I felt like they suffered from the same syndrome that I have seen in a few other Beatles tribute bands. It’s called the “That does not sound like George Harrison” syndrome. Funny since they were formed by George’s sister, Louise Harrison. Louise was actually at the event today. She signed autographs and gave a little talk, told some stories about George, and answered a few questions shouted up from the crowd. I wish I would have asked a question, or even went to speak with her directly. But while the chance to speak with her directly was presenting itself, I was just waiting for the next act to start, and it ended up taking a long time. So it turns out I had my chance and let it go. Which just goes to show, don’t hesitate. Take your chance when you have it. I could have shaken hands with a flesh and blood relative of one of the Beatles. I could have told her how much the Beatles have meant to me and how much respect I have for George’s honesty in his solo music.
Great show though. Go and see Liverpool Legends in Branson, Missouri if you are in that area. They play in Branson almost all year round. I would love to see them again. My wife’s feet are tired from dancing and my hands are tired from clapping and tapping on my knees and swinging my chair around out on the floor.
On a side note, halfway through the show, a Beatles Trivia game was played by audience members. It was done in two sections, and in each section, one of the contestants was a woman with a developmental disability. I was a bit upset when the first woman could not think of the answer to her question, and the “hostess” whispered the answer in her ear allowing her to continue. No such luck for anyone else of course. Then in the second round she got her question wrong and the hostess said “We hate to see you go” followed by “Who’s next, this guy, he looks smart”. I don’t think she realized how it sounded. Plus I don’t think that what any disabled person needs necessarily is to be catered to or “given the answer.”
Just a game though. By the way, when “John” said “Here’s a slow song…for you slower folks” it was part of the act, it was authentic John Lennon, and I laughed along with everyone else, so you figure that one out.
In the second round of the trivia game, the other woman with a developmental disability got her question wrong and the hostess was very condescending toward her. “You did really good. I think you should win a prize too”. Stuff like that. I just hate this kind of crap, and I don’t think it is what anyone with a disability needs. I wonder if she would have condescended to me had I been one of the contestants. I am really bummed that I didn’t put my name in. I could have won a poster.
I recently wrote a posting imploring disabled people in Canada to let me know they were there and that they were reading “Treadmarkz”. This led me to look at the rest of the map and realize that my readership in Russia is almost zippo. I was doing some research to see what topics I could tackle to try to reach out to my Russian disabled friends. That led me to a great blog that really sums up everything that I’d been attempting to do with the Canada posting and the planned Russia posting. It is all about what its like to be disabled…outside of America.
I added it to my blog roll and I’d like to direct your attention to it. It is called “Outside America.” Give it a look. For those of you who are in the States, it will be eye-opening I am sure. And I guess for anyone on the planet it may be eye-opening to see how the disabled live in any other country which “Outside America” covers. And it covers a lot of ground, I can see. Check it out, in my blogroll on the right.
A couple of weeks ago I took a roll down to my favorite rib joint (I like their fish), to get a take out order. I had almost made it home, I was in the parking lot actually, when a truck stopped behind me, and the guy inside stuck his head out the window and yelled “Hey man, you wanna race?”
I looked in the bed of the truck to see if he had a wheelchair. No wheelchair. This was a walkie I was dealing with here!
Now, ever since I started this blog and started reading what other people in wheelchairs have had to say about the weird, uncomfortable comments they get from people, I had been looking forward to a situation like this, so I could come up with something great to say back.
But I had nothing. I just said “Uh…no” and laughed and rolled away. I spent the night angry with myself. I brood over stuff like that.
I thought what I should have said is “No, I don’t have an engine.” You know. Point out the obvious advantage he had and how pointless it would be to race. Fake an absence of a sense of humor. Today I rolled down to that same rib joint to get myself another fish sandwich and in that same parking lot on the way home, another guy stopped his truck, stuck his head out his window and said “Wanna race?!”
Keeping in mind the obvious advantage he had over me in a race, I thought, let’s see if we can’t even the playing field here a bit. I stopped and turned and said “You wanna arm-wrestle?”
He rolled up his window and drove away.
Now, the important thing to remember, is, I think anyway, that nobody does this with the goal of being a jerk. They just don’t know that a lot of us in chairs think it’s a little embarrassing, and some feel it’s flat out offensive. But it’s important that we let them know.
Time for the long-awaited sixth installment of the Time Machine with Hand Controls, in which our hero finds himself in the perilous position between a Viking long bow infantry and the treasure the Vikings sought out on the British Isles.
Just outside of York, England, 866 A.D. – The Time Machine with Hand Controls came to rest in the middle of a field. I got my chair out and popped the wheels on, and as I approached the village center, the locals began to stop what they were doing, and the cry of “Ivar!” began to grow louder. I, being well-versed in ninth-century Anglo-Saxon speech quickly determined that the locals thought that I was a Viking raider known as “Ivar the Boneless.” I did not do anything to make them think I was Ivar, but I did not deny it at first either. It was a powerful feeling.
I learned that the dreaded Vikings had just attacked York and were beginning to lay waste to surrounding areas, and news had made its way around that the raiders were led by a “legless demon” who was carried on an armor plated pallet.
According to the stories, Ivar either had no legs, or he had what is now known as osteogenesis, or brittle bones leaving him unable to stand. Whatever his affliction, he did indeed lead his army into battle, carried on a shield, which I found out when, not long after I arrived, who should appear but Ivar himself on his shield, at the head of an infantry of Scandinavian pillagers on horseback barraging the village with arrows from longbows and torching everything in sight.
He shot a long bow from his “chariot” while screaming out instructions to his front line. In the Scandinavian military culture of the time, a Viking leader was expected to lead his troops into battle, and by God, Ivar was clearly driven to the point of inhumanity to do so. What I witnessed was an attack which was no less merciless than any other great siege in world history.
I had seen the movie “The Butterfly Effect” so I was not going to affect history one way or another by taking up arms for or against Ivar. Instead I headed for the woods, far out of range of the longbow, and watched with binoculars. I was unable to determine which story of Ivar was the true one, if either, but the Brits ran from Ivar and his band as though he were a minion of the devil himself. The Scandinavians quickly laid waste to everything in sight, so I sneaked through the brush back to the Time Machine with Hand Controls, and got the hell out of dodge, having satisfied my curiosity about one of the most mythical, yet very real, figures in disabled history.
Understanding Wanna-be Amputees: It Helps A Little Bit If You’re a Paraplegic With Two Truly Superfluous Limbs
It’s called Body Integrity Identity Disorder, and it’s sufferers are called “wanna-bes”, as in “I’ve got two legs but I wanna-be an amputee. It is not listed or accepted as an official disorder. Sounds like something I made up, but there are cases of it all over the world, as I discovered in a documentary by Melody Gilbert called “Whole.” The Wanna-bes in the film referred to their voluntary amputations as “body correction surgery.”
Having been disabled since birth, I thought this idea was completely alien to anything that I’d ever imagined could possibly cross the human mind.
Though I don’t know why I’m surprised. We are interesting creatures.
But I almost drew the line when one of the subjects of the study, who had two perfectly good legs, referred to one of them as “superfluous.” I thought “Two perfectly good legs and you don’t want them, in fact deem them unnecessary?” This is when the idea of a Paraplegic and Amputee’s Goodwill Store” occurred to me.
But half-way through the film I realized that I could identify in some small way. I mean I have many times damned my own useless legs for getting in my way. I don’t damn my disability, just my legs being there for no reason. So much extra work, just getting in the car and having to bring my legs too.
The film told the story of a non-amputee who lived as one by tying one leg up inside his pant leg. This man said “I don’t feel incomplete [being forced to live with both of his legs intact], I just don’t feel like that part of my body belongs to me.” Okay that is close to what I have described, with my own legs, but again, mine are useless! I joke about cutting mine off all the time, but I wouldn’t do it. I’ve got stuff to do!
Another wanna-be’s wife helped him cause himself frostbite so he could realize his dream of becoming an amputee, while another threatened to leave her husband if he went through with it. This man was willing to not only risk his safety and his life, but, if he made it through, his marriage. He was willing to die for it. This was not an uncommon expression of desperation among the wanna-bes. One said that if he found he could never become an amputee he might consider suicide.
Which brings us to Dr. Robert Smith of Scotland, the Jack Kevorkian of wanna-be amputees, if you will. One of his patients pretty much fought him into submission, convinced him to perform the amputation by making the doctor see that he was going to keep hurting himself, either by giving himself frostbite or by shooting himself in the leg, until he got what he wanted. So now not only do we have the right-to-die issue on the table, we’ve got the right to lose a limb surgically for no reason. And now Smith is the poster boy for voluntary amputation surgery, or “body-correction”. Because Smith could see beyond a doubt that the safety of his patient was in extreme jeopardy and he had to act to make sure that he did not let the man’s condition cause him harm that he could prevent.
It’s called the Hippocratic Oath. Millions of doctors world-wide are sworn to it. It is not a requirement like the oath one takes before taking the witness stand, but among doctors who do choose to take the oath, it is considered binding; a matter of honor. Part of the oath is to “never do harm to anyone”. The problem here is that, sure, you could say that cutting off someone’s leg when it is not injured, infected, damaged or otherwise endangering the patient is indeed harming him. But if he is threatening to shoot his leg off at home, he could be doing himself much more damage than a surgical amputation would.
Another wanna-be said if his dream did not come true, he’d probably be alright, because of all of the other things that’d happened in his life. He said it with almost the same pensive expression that, in the movie “Field of Dreams,” Dr. Moonlight Graham said it wasn’t a tragedy that he only got to play baseball for a day, but that “If I’d only gotten to be a doctor for one day, that would have been a tragedy.”
So, clearly this is very serious for the people who have this disorder, and I mean to treat it as such. But when you don’t understand, you make light, and I’ve gotta be honest, after seeing this film, I still don’t completely understand. Not completely.
NOTE: Please read the very informative first response to this posting.
I can’t imagine still writing this blog 80 years from now. But then again that is a very large part of my blog, life’s little experiences, which 80 years onward, I am sure I will have gained much. What am I talking about? I am talking about Olive Riley of Australia, who died last week. Known as the “Worlds Oldest Blogger”, she’d just started blogging a year or two ago, but she packed in over a century’s worth of wisdom into that time. Check her blog out here. It begins with a Rest In Peace message addressed to Olive, written by her friends and family, but after that you will see over seventy postings from Riley herself.
In this week’s episode, we find the four-wheeled space-time rambler in the midst of the Dark Ages once again, this time smack in the middle of a Viking raid on the British Isles…only with an unexpected twist. The leader of the Scandinavian raiders, Ivar the Boneless, does not have the use of his legs.
Ivar is a little known blip in military history, and even less-known among the annals of those with disabilities who have molded the world we currently live in. The facts of the Dark Ages are…well, Dark, but legend, accounts left behind, and scant bits of evidence piece together to suggest it is true.
And I landed right in the middle of it!
To find out what I saw, stay tuned for the coming episode of “A Time Machine with Hand Controls” and I will spin you a yarn of high adventure, intrigue and conquest, things that are not often thought compatible with disability…