Archive for January 2008
Ever since the Americans with Disabilities Act in 1990, there has been occasional debate over the installation of ramps in buildings that are considered to be of “Historic” significance. I majored in history in college so I have a strong feeling about altering historic sites, to make it suitable for the modern age. But I am also in a wheelchair. There are many places that I would love to visit, to commune with the past. But in order to do so, I might have to get out of my wheelchair and have a couple of friends drag my chair up the steps while I drag myself up to the top. Would I rather do that than have the place altered? I thought so, but then there are plenty of historic sites that have had additions made that were not originally there. Electric lights (the Alamo), or roads and parking lots so people can access them by car (Stonehenge). And let’s not forget the gift shops that usually carve out their own little niche nearby or inside the site itself, making it impossible to forget that this place was once the site of a future-changing event, but is now little more than a commercial undertaking. If these places, which are not only historic but in the case of Stonehenge, sacred, can be sullied by modernity in these ways without a second thought, then what is wrong with putting in a ramp in front of a building?
About five years ago, I lived alone and I had a job that was about 11 blocks from my home. I don’t drive, the buses didn’t run that late, and I was too stubborn to ask for the help of family members who I know now, and knew even then, would have been more than willing to help. But I am extremely stubborn. Always have been. So even in the winter, I would go out in the snow and plow my way on down the road to work, no matter how much it snowed. At the time I thought I was just being determined, and dedicated to my job. But as Paul McCartney said, “There is a fine line between recklessness and courage.”
* I would not recommend this to anyone, let me make that very clear. There is always a better way. I would recommend not being stubborn about asking for help if you need to get somewhere, which I am sure most level-headed people have already figured out for themselves. Thankfully I am older and wiser now.
However, as the snow has drifted in around me in the past weeks, I have longed for the days when I could easily go outside whenever and roll down the road maybe to pick up a new CD or just browse through the racks. That is a bit far now that it’s winter, but if you are in a wheelchair like me, you don’t have to be shut in completely when the flakes begin to fly. There is more to outdoor life in the winter than just getting too and from your car. If you are reasonably strong, and can get around under your own power, and if it is not too cold (don’t get sick in the name of exercise) it can be extremely envigorating just to take a trip down the block and back, in an inch or less of well-packed snow. It’s as simple as that. Don’t go too fast, and be careful of course. But just making your way over the minor bumps and dips can get the respiration going just enough to feel like you’ve had a good workout. Then go back indoors and have yourself a cup of hot chocolate or your favorite hot tea.
I never thought I’d write a post like this. Never. You see, at the time of this writing, it is about 264 hours since the last time I drank a carbonated, sugary, syrupy beverage. Pop, soda, coke, soft drink. Whatever you call it in your corner of the world, I am done with it, I hope. And yes, I am in fact still counting the hours. But it’s been 11 days.
In a posting called “Scar Tissue”, I mentioned that I don’t feel like I eat the way I should. This got me thinking that I really did want to cut out drinking pop. I was already two days in at that point, so I did. As a disabled adult there are many benefits I can get from quitting. For instance, caffeine is classified as a diuretic which can cause more frequent urination than normal. For anyone with little or no sensation below the waist, or who is on a catheterization schedule, not drinking it can make your life easier, and free up some time for other things.
There is no scientific basis for the myth that the chemical Yellow 5 in things like Mountain Dew causes impotence in males, and even if there were, there is Y5 in a lot of foods, so it’s hard to avoid. So drinking pop won’t make reproduction even more complicated than it already can be for the disabled. The only impotence it did cause me was in my energy level. I swear I feel more energetic now. And I think it is because I am getting more oxygen because my throat is not so mucky from the syrup in pop. So maybe now I can go and do something about my gut. A lot of guys in wheelchairs get this same gut because we are most often in a sitting position, not working it out.
And then the big one: Sugar itself does not cause diabetes, but the inactive lifestyle that results from eating and drinking sugary stuff can, and diabetes can affect circulation, which can hamper healing. Like the healing of pressure sores or abrasions that people in wheelchairs are all too familiar with.
So quit, I say! It is hard to cut out all sugar from your diet, but to cut out the one source with the highest concentration of sugar, along with the caffiene and syrup, can only be to your benefit
There is not a single regular character on a single sitcom that I can think of that is in a wheelchair, unless you count “Timmy” from “South Park” which I hate to even comment on, or “Joe” from “The Family Guy” which is a cartoon. Though it is great that they made this character a police officer, there is one very cartoonish episode where Joe says he “feels useless” and decides he’d like to be able to walk so he gets a leg transplant. After the successful surgery, he decides that he only hung around with his current friends because they were lazy and he was in a wheelchair. There are so many things wrong with this entire premise, I don’t know where to start. Anyway he moves on to another group of friends, and he gets a big head about it, and his old friends, and his wife get jealous and she shoots him in until he is disabled again. The only good thing about this episode is that he learns that his life was fine the way it was.
I’m not sure if it is, again, the image that people in wheelchairs take themselves too seriously that keeps writers from putting a disabled character in a sitcom, but I would love it. Not so their would be a forum to make lame jokes about how stupid and closed-minded the able-bodied people are, not to depict the disabled as heroic survivors, and not so I can finally have a sitcom that I can relate to.
I can relate to plenty of them already and I would hope that my hypothetical disabled character would be one that the masses would relate to. That’s what sitcoms are, a little slice of life that pretty much anyone can relate to. We all have plenty of reasons to laugh at ourselves, after all. Yup, just a slice of life, and I want my slice on primetime TV, by God! The character would have to be written by a disabled person, I think, but only to avoid the potential mistakes I listed in the second paragraph. And it would have to be natural, not trying too hard to show that the character is “just like everyone else” but just there, and funny.
There it is folks. In big bold letters. Cripple. Does it hurt anyone? No. This is a word that goes back thousands of years, and until not too terribly long ago was a perfectly noble way to describe someone either with malformed limbs, or without use of any number of their limbs. You could say it is politically incorrect, but that is all an invention of human minds. I myself have no use of my legs and I find the word “cripple” to be just fine as long as it is not used to hurt or demean, which was not its original intent.
A while back I was cutting my dad’s hair and my family and I were joking that I should go into business. But I’d have to come up with a good name for my shop. I stoicly suggested “A Cripple With a Clipper.” Why not? It tells you what you are going to see when you come through the door. Simple, no frills advertising. But it is important to remember that, as is the case with the endless titles human beings give themselves (man, woman, banker, athlete, American, dog-lover), the word “cripple” says very little when you look at the whole person. For instance, when people came this shop they’d see that I may be crippled but they should still expect an impeccable haircut, because I’m a barber.
The BBC’s OUCH! Weblog recently conducted a poll of its readers that showed respondents (some physically handicapped, some not) found the word “cripple” more offensive than “psycho” in describing disabled people. This boggles my mind! Check out the results here. Among disabled respondents, “cripple” was found to be much more offensive than “psycho” in comparison to non-disabled respondents. This really boggles my mind! Granted, we are talking about two different types of disabilities here, mental and physical, but think about it. A lot of people refer to Charles Manson, Ted Bundy and Jeff Dahmer as “psycho.” You never hear anyone say “He killed 43 people, cut them up and ate them?! What a cripple!” This shows that “psycho” is a word that people have no business using in reference to any disabled person. But the results of this survey also raises a question: Is a person without use of, or malformed, limbs really as offensive as a serial killer? The answer is no, of course.
Politically correct people try to help. “Differently abled”, for example, was thoughtfully bestowed upon people with handicaps by the US Democratic National Committee during the Reagan Administration. I wrote a post early on in this blog where I mentioned “people who decide what it is politically correct to call us.” This is exactly what I was talking about. The government telling me how I want people to describe me? No way. I am an individual, and I say there is nothing wrong with “cripple.” I do use some of the politically correct terms in this blog, but only to be understood by the general public. Of course you cannot use “cripple” for all disabilities, like the blind or deaf. And “Paraplegic” will do just fine to describe my specific case, but in terms of the all-encompassing word for the fact that I cannot use my limbs, disabled, differently abled, do not work for me. Cripple is fine.
One of the links on my blogroll is to Heavenly Ski Resort, a place in Lake Tahoe on the border of Nevada and California where I went adaptive skiing a couple of years ago with a good friend of mine.
Heavenly Ski Resort provides all equipment necessary, and they give you a thorough test to be sure your strength and reflexes are suffiecient. Safety first! That and it is a bit straining on the upper body and forearms at first though not as bad as I expected. And the strain wears off quick once you get up there and start enjoying yourself.
A lot of ski resorts offer adaptive skiing, so you don’t have to go to Lake Tahoe for it, but I do strongly recommend Heavenly; not only because it is the only place I have ever skied, but if you are going to go skiing, I’d be unlikely to believe there is a better place than Tahoe. Not only can you go skiing, but the place is crawling with casinos if you are into that, and any category of entertainment is usually available within rolling distance. Plus, coming from brown and green hilly Minnesota, when I was up on the mountain at Lake Tahoe, the crisp snow-capped greys of the rocky mountain peaks contrasted by the calm aqua blue lake were the perfect setting to try something bold, new and exhilerating. I said it after my first lesson at Heavenly, and I will say it now: speeding down the mountain alone (once the woman giving me the lesson let go) was absolutely terrifying, but I loved it!
You’re probably thinking “How can you say that skiing was terrifying while recommending a ski resort?” Well to be honest with you, skiing may not be for everyone. But deep down, I am a thrill-seeker, and that is why I loved it. Just knowing that I was at the mercy of the mountain yet I was in complete control, all I had to do was shift my skis in the right direction and I’d be fine. So if you want to get away from the everyday 9-5 and bring out that inner-thrill seeker, you can go sky-diving or you can start off by doing some adaptive skiing. I guarentee that you will be reminded, if you had forgotten (everyone does, sometimes) that you are very much ALIVE!
Like any other kid, I went through many stages concerning the question “What do you want to be when you grow up?” One of those stages was “Rock Star”. Of course. Who doesn’t? It would fulfill two of the more basic needs of an adolescent boy: Get girls, Get attention. I have never seen a major nationally-known rock band with a member in a wheelchair. Honorable Mention: Brian Wilson of the Beach Boys and Syd Barrett of Pink Floyd developed mental disabilities in the 60s but both were drug-induced. Roger Daltrey had a stutter, but only for one song, “My Generation”. And Rick Allen from Def Leppard lost and arm and continued to drum, and they were one of the most successful bands in the 80′s.
Upon researching this subject, I came across something that I, having spina bifida, found fascinating. John Mellencamp and Hank Williams, Sr. were both born with mild forms of spina bifida. I wish it were more widely known that two talented people such as these had Spina Bifida. Don’t get me wrong, there are immensely talented people with Spina Bifida all over the world. But let’s face it, people look up to well-known celebrity types. However, in the end, we all just represent ourselves. It wouldn’t give me any credential that I didn’t already possess if one of the Red Hot Chili Peppers, Green Day or Korn were in a wheelchair. I’d just like to see a band like that. I know plenty of guys in wheelchairs who play guitars, so it is bound to happen.
I am a big fan of World Wrestling Entertainment, formerly the World Wrestling Federation and World Championship Wrestling. I like to describe it as “The Colosseum meets Vaudeville, with a little bit of David Copperfield illusion thrown in.” I know it is fake, but I love to watch and wonder how they do it without killing each other. I have certain wrestlers that I root for, maybe because I see something in myself in the character that they play. But I would love to see a guy in a wheelchair get in the ring. A guy with a massive upper body, which got that way through years of just getting around, not through performance enhancing substances. And I would like to see one of the “Superstars” try to take him out of his chair, or take him on in an arm-wrestling match. I’ve seen some guys in chairs that could make that a pretty good match! There should be more than one wrestler in a wheelchair so they can take each other on. First one out of his chair is declared the loser of the bout. Hell, I think there should be an entire Wheelchair Wrestling Federation!
Their was a wrestler in the WWE with a disability around 2003-04. His name was Zach Gowen and he was a single amputee resulting from cancer in his left leg as a child. He competed on one leg, but he found very creative ways of using his particular method of locomotion to his advantage in the ring. Gowen continues to wrestle in other circuits today.
Other than Gowen, the closest thing to a disabled wrestler I can think of are those guys from the documentary “Murderball” (See the link under “Blogroll”, bottom right). Murderball is wheelchair rugby for quadriplegics, but it is really intense what the players put their bodies through. And it shows that people in wheelchairs can be just as passionate about pushing their bodies to their physical limits as anyone else.
I was born with Spina Bifida. I can’t really give you a great description of what Spina Bifida is, because every case is different. For instance, my cousin has a child with Spina Bifida who can walk, while I never have. It all depends on the area of the spine that suffered pre-natal damage. As with any technical subject, I think it would be best to find information on Spina Bifida at the library as long as the book is current. I have never really read too much on the subject to be honest. I always felt like it was more important just to know myself and what my personal limits and abilities were. I would never suggest to anyone that they shouldn’t be educated about their disability. I feel that I know what I need to know. But a book can only tell you so much.
With Spina Bifida, the many operations you will likely undergo beginning in infancy, can leave you with many scars and imperfections. Anyone who has listened in on the “Kids Are Too Fat vs. Teenage Girls Are Too Skinny” debate can see we have a major image hangup in this country particularly. Any slight physical imperfection has to be covered up, removed or otherwise fixed. And I am NOT immune to this. For example, my hairline has been receding for quite some time, and after I began to notice it, I wouldn’t often go out in public without a hat. Though my attitude is improving on this, I have another “imperfection” which I never tried to conceal. It’s a slightly curved scar about three inches long just behind my right ear which I recieved when I was a baby and I had a shunt put in to regulate spinal fluid. I like to keep my hair very short, and this makes the scar very visible. Maybe it is because I am in a wheelchair and I know that people will probably look twice at me anyway, but I see no reason to cover my scar.
I have other scars that tell just as much of a story about my life, on my back and on my belly, but you won’t see me with my shirt off very often. And do you want to know why? Because I have a gut that could use some work. But all that tells you about me is that I don’t work out as much as I should and I don’t eat the things that I should, which is nothing to be happy about. A receding hairline might tell you about my genetics, and that I’ve worn a hat too much, which just shows you how brilliant it was trying to cover it up in the first place. My scar behind my right ear tells a lot more about where I’ve been. And it reminds me of what I can and have survived.