I thought about this blog entry on Easter Sunday…
My quadriplegic Uncle Dave was home…I feel like I have at least somewhat of a better perspective toward ableism than others because of him but it is so hard to forget how easy things are for someone with an able body.
I woke up in the morning in bed with my girlfriend. Having a girlfriend and in of itself is something I would be way less likely to have if I were not able-bodied. I remember my Uncle used to have girlfriends but his last one left him without saying anything in about 1993 I would say. Maybe it shows what kind of person I am but I cannot imagine being with a severly handicapped woman nor can I imagine my girlfriend being satisfied by me if I were handicapped.
We wouldn’t be able to cuddle the same, hug the same, hold hands…all of that would be out of the question. I thought about how I met her at the Enclave pool in the summer. I would not have been able to even get inside the fence outlining the pool had I been handicapped, let alone get in the pool or the hot tub.
I remembered how I used to meet her out at the bars and there are very few bars in BG I could even get into. I wouldn’t be able to see over the bar to get a drink if I were handicapped….
Anyways, I was laying there and I thought about how uncomfortable it is for me to sleep on my back and I get to move around. My Uncle Dave has slept every night on his back, without moving, since 1985. He often cannot sleep through the night and just lays there, unable to do anything.
When we rolled out of bed I thought about how nice it was for me to be able to get up when I want. My Uncle Dave has bed times even in his 50’s. If he is tired, he has to wait to be put to bed. If he is wide awake in bed, he has to wait to be lifted out of bed.
When I go home, I sleep in my basement these days. I wouldn’t even be able to go down there if I were a quad like my Uncle Dave.
The running tally,
So far that Easter Sunday, had I been in Uncle Dave’s shoes…
I probably would not be with my girlfriend, I wouldn’t have slept so well, wouldn’t have been in my basement and would have had to rely on my mom to put me in bed, dress me and get me out of bed, brush my teeth, wash me, shave me and brush my hair.
When I got upstairs I sat down at my leisure and ate cinnamon rolls. If I were Uncle Dave, I would have had to have a special table to sit at because my kitchen’s island is too high and I would not have been able to eat cinnamon rolls easily because he has no device that can grab them out of the pan quite like a human hand can. I also would have to watch out when eating such fatty foods because I would get no exercise at all hardly with a permanently-sedentary lifestyle.
After breakfast, Megan went to take a shower and I got Dave a cigarette…I had to light it for him and he has to have a special device for holding the cigarette. When he is at his nursing home he has to go to the top floor of the building and go into a cramped “smoker’s shack” with very poor ventilation (it’s very smokey in there) just to smoke.
I then slumped down on the couch leisurely and read Sports Illustrated. My Uncle Dave is confined to his chair and never reads magazines or books because they are too difficult for him to turn the pages with his hands. After a short while, the magazines, because of their glossy finish, almost assuredly fall onto the floor anyways.
I then picked up my laptop and also flipped through the channels. My uncle dave can mash buttons on both a computer and a remote but it takes him forever. he almost always drops the remote. He can do fine with a desktop computer but it takes him forever to type. His emails to me are often very short because of this. He cannot use a laptop because he has no way to carry it around and if he were to put it on his lap it would very likely fall and also because of the angle to his face, the screen would be difficult to read.
I also had a whooping cough on Easter…It was very irritating but nonetheless there is something about a harsh cough that is somewhat soothing immediately after the cough. If coughs were not beneficial in some way I suppose we would not do it. My uncle Dave, because of the natural hunch he has because of the inability of his lower back muscles to hold him up, he often builds up phlegm in his lungs. If we had the kind of phlegm he had, we would be coughing up a storm yet, Uncle Dave, cannot cough. He sometimes forces out a frustrating, forced clearing of his throat but it is hardly close to a cough.
I stopped flipping the channels at American Pie, a movie Uncle Dave first saw at our house. He’s always liked that movie. The only time he ever gets to see new movies is when he is at our house because they have no DVD’s nor DVD players at his nursing home and there are no trips to the movie theater. Whenever he comes over it is usually a marathon of movies. I thought about how I often complain about the price of going to movies but didn’t think about how much of a privilege it is to even go. There are very few spaces for handicapped people at movie theaters now that I think about it.
As funny parts occurred on the movie, I laughed out loud, my brother laughed out loud, so did my dad and my mom, but my Uncle Dave…he can’t laugh out loud. When Uncle Dave laugh’s his eyebrows raise, his shoulders shrug and his mouth opens real wide. Near the end of his life he’ll squeak out a weez but it is hardly a boisterous laugh.
How much worse can it get than not being able to laugh out loud…LOL as the kids say?
I went and took a shower and thought about how nice it is to be able to take a shower on my own and wash myself on my own. I thought about how good the hot water feels coarsing down my body, how the warmth seems to ooze into your body. My Uncle dave never feels that. One time a group of nurses at his nursing him were getting ready to give him a bath and had his foot in the tub. They didn’t realize they were scalding his foot until he smelled his flesh burning. Since then he has suffered numerous infections and had to lose two toes. His body is no longer accepting many antibiotics and he will probably eventually lose his life to an infection that would have been defeated had his foot not been burned due to negligence…
Don’t worry, he’s about to get a good chunk of change for that.
I got out of the shower and tried on a couple different outfits. I didn’t know what I wanted to wear to Megan’s dad’s house…we had to drive there in a little bit…oh the joys of Easter travel. (that’s why I didn’t finish the third blog til Monday).
I thought about how nice it is that I can try on different kinds of clothes. My uncle Dave can only wear sweatpants because they are the only kinds of pants that will not result in bed sores. He can only wear t-shirts and hooded sweatshirts because he doesn’t sweat and needs to stay cool inside and outside in the cold he can’t fit anything bigger than a drafty hooded sweatshirt on with his chair.
After we got ready…we had to head out. I gave my Uncle Dave a hug, as well as the rest of my family and headed toward Michigan. I thought about how nice it is to drive and be able to go whereever I want to go. My uncle Dave is stuck in his nursing home unless someone comes to get him. I can go see my family whenever I want…he can only see them when they come to see him. The farthest place he can go is the grocery store down the street but his power chair is broken and hasn’t been replaced by the nursing home so scratch that…
I thought about how I can adjust my body in my uncomfortable car seat. My Uncle Dave can’t even feel when he’s uncomfortable. He had a piece of shit chair for way too long that wasn’t replaced by the nursing home. It resulted in a sore that almost cost him his life…
More lawsuits for that one.
we got to Meg’s Dad’s house and I made the rounds with her family. I wouldn’t have been able to get in there had I been handicapped. I wouldn’t have been able to move around very much. Her family would have probably looked at me weird if I had been in a chair. There would have been no one to help me go to the bathroom because no one there was a nurse.
All in all, I take so much for granted. I can go to the bathroom, eat, take a shower, travel, sit, sleep, wake up, draw, talk on the phone, read, etc. all without the assistance of others. I live my life on my own terms.
My uncle Dave lives everyday of his life on the terms of nurses who don’t love him and don’t care about him. People will not give him love because he is different while he has so much love to give. He spends his days in a cold, loveless nursing home with a smile on his face as the happiest, wittiest and funniest person I have ever met. We all could learn something from Dave Carr.
How could we make it so everyone would love people like my Uncle and make things easier for him? Well first, I think someone should make a movie about him and tell his story…I wish there were a really popular documentary about being handicapped…maybe there is I just don’t know of it…
I think there should be a handicapped awareness month wherein able-bodied students are required to go through school days without the basic abilities that able-bodied people take for granted. I also think there should be more federal legislation created in favor of those who are handicapped.