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I try to avoid writing about Religion and Politics. Religion because probably a third of my family/friends are Christians, a third are Buddhists, and a third are atheists, and none have ever let me down. How can you argue with the bottom line? Politics, my friends are perfectly balancing both ends of the spectrum, I’m kind of hanging out in the middle. More individual rights in the pursuit of happiness, government help if you’re willing to help yourself. All that jazz. But on rare occasions I hear a news story that leaves me so flabbergasted, I have to publically scream what the hell?
I saw this link on face book “Pat Robertson Says Alzheimer’s Makes Divorce OK”. First let me explain, I laugh at almost everything. I think everyone has their own coping mechanisms to get through life, mine is self-deprecating humor and trying to find laughter in everything. But this headline almost triggered tears immediately. A trusted friend posted it so I had no reason to question its authenticity. But on a headline that is so callus and so anti everything I was taught in Sunday school, I needed to hear it from the asses mouth. And pray that somehow he was misquoted. That quote would be cruel from an axe murderer, let alone from a religious leader. In my opinion this clearly warrants a go-directly-to-hell card for a self proclaimed man of the cloth, or at least a thousand years in the purgatory line. I found the actual video where Robertson made this statement. It was very clear, plain as day. To my knowledge, all his faculties were in tack, making this horrendous statement with a clear mind and forceful intent.
My mind filled with anger, sadness, and questions. In summary, in his interview Robertson states that if a spouse gets Alzheimer’s, their partners may file for a divorce because the spouse is no longer the same person they married and as long as there’s custodial care in place, it’s cool to get a quickie divorce and start a new life. I did not quote him word for word, but this is pretty much what I got from his explanation. So there ya go.
This week, 16 years ago, I was packing for what would be the girls trip that all other trips for the rest of our lives would compare to. I was a writer at a cable network with the unwritten promise that when the network grew up, I’d be the head writer for the 1st major sitcom that centered around a person with a disability. And I was getting serious with my now husband. Man I was da bomb, dang, I’m depressed, but that’s another story,
The best laid plans sometimes bite you in the ass. 16 years later, I’ve transitioned from a walker to a wheelchair. I’ve put on 25 pounds, and I’m currently praying for a interview for a entry level position doing paperwork. (which I’ll squeal with glee if I get and will worship the person who is pushing for this, either way they rock). It’s not such a bad life but honestly, sometimes, I just don’t feel like my younger, optimistic self.
I’m just trying to understand Robertson’s rationalization. If a person “can” get a divorce because one of the cruelest and scariest diseases that I know of, changes their partner, then as far as I see “In sickness and in health” is only a suggestion in vows. So I’m thinking “Till death do you part” might only count in a “ideal situation”. If you get a disease that you have no control over is grounds for a divorce, then we should very well be accountable for our own choices, that may have taken us down other paths then those we so clearly marked out in our wedding vows. If I went to physical therapy everyday I’d probably still be using a walker and still weigh 95 pounds. In Robertson’s reality, can my husband morally leave me? Because he’s a saint, he’ll probably stick around, and it’s not just because we can’t afford to get a divorce, really…
Of course I’m kidding. I’m lucky. I do have one of the good guys. He believes in living miserably ever after for the rest of our lives. And there is great comfort in knowing that. I thought that’s why people got married. I think it’s an extremely dangerous slippery slope to proclaim that Alzheimer is a just cause for divorce. What about other health problems? Cancer? Cerebral Palsy? A man suffering from the flu, which as wives we know is the true test of “in sickness and in health.” It’s extremely irresponsible that Robertson made such a horrendous statement. Even if 99% of his congregation disagrees, he still can influence that 1%. And that’s just sad. I am a great believer that most words, written or not, can be translated and interpreted, but as a hopeless romantic, I had always thought that no truer words can be shared between two people then “In sickness and in health, til death do we part.” I am truly heartbroken that a “Man of God” questioned this very basic idea.
Someone once said it’s the small things in life that make it worth living. I’m pretty sure they were poor, because with friends and family flying around the world, finding a penny on the sidewalk has lost some of its former luster. Although I must confess, a quarter, now a quarter, that’s worth bending over for.
But this week I found myself giggling like a little girl about two of the strangest things. It surely means I need to get out more but until I find enough quarters to fly away to some exotic place, these things, among others, will surely help me muddle through.
Mulch. Mulch made me happy and giggly last weekend. After some reflection and considering what I think mulch is made of, (I should Google it, yet I’m afraid to,) I just realized how sad that statement is. But since it is already out there, I should own it. My name is Claire and I, for some reason, enjoy mulch.
Long story shorten. My dad decided to plant 135 pecan trees on their land. I think it was a three weekender project. First they staked where they wanted each tree. This was actually quite comical. It involved two extremely intelligent, but hard of hearing men, one spacey pre-teen and one really long rope with notches every so many feet. And they just slowly moved forward in an uncoordinated triangular dance. I really could not help that much, just moseying along in my wheelchair trying to keep my son focus so that I wouldn’t find the rope wrapped around him, either self-inflicted or otherwise.
The 2nd weekend, the royal “we” dug holes. All I’m going to say about this process is, one would think that a big bad rented auger drill should be able to slice through the ground like butter. Not so much. Thankfully with patience and persistence, it got done. And on the third weekend, we planted. I guess I was a tad more helpful that weekend, as I pointed out where all the trees should be set. I was like Vanna in overalls. Don’t laugh, finding the holes was almost like playing Where’s Waldo?
Although until this point, I felt that I made an extremely cute cheerleader, I must admit I felt a little useless. Then it happened. After each tree was planted, a bag of mulch had to be poured and evenly spread around the base. Finally something I could do. And I did, for like 20 trees. There I was bending from my wheelchair, spreading the mulch by hand, foot, or any limb feeling cooperative at that moment. I felt like I made a contribution and that’s why I now love mulch. Of course after everything was done there was a debate if the mulch needed to be spread further out, Excuse me? I’m rethinking this whole being productive thing. Maybe mulch was just a passing infatuation and next time I’ll return to my goddess cheerleader figurehead.
There was one other thing that made me giggle this week. Last Christmas we bought our son Nicholas a Xbox Kinect. It’s the game system that you can use your body as a controller. This really intrigued me. Not only as a mom that loves anything that gets Nicholas up and going but probably more importantly as a closeted gamer, just because I’m so bad at any games that requires any amount of coordination.
Charismas morning, we set it up. It recognized Nicholas, giving him the coveted spot of being player one. It quickly sees bob as player two. Then I get in front of the sensor. Hello? No acknowledgment. No welcome. No let’s set up your player’s avatar. For like a month, I tried everything. Different color clothes. Moving furniture. Shouting. Cursing. Crying “Xbox why don’t you like me?” At my lowest point I even googled “why can’t my Xbox see me in a wheelchair.” Thinking I was out of my mind, betting it would be my first ever Google search that returned with “No results found, get a life.” I was totally shocked to learn that this was a real issue in the disability community and Xbox would be putting out an update to fix this problem soon.
Slowly I made peace, living with a Xbox that never looked at me. Over time, the hurt became just a numb feeling and I truthfully had forgotten they were working on a patch. Last night Nicholas was playing this silly Xbox Kinect game. I don’t know what possessed me but I tried playing, and ended up squealing with delight that, at least, that particular game, let me play, however badly.
I haven’t tried playing other games and I’m hoping it wasn’t a freak accident. But for now, I am the Fruit Ninja. A Crazy mulching fruit ninja. I really really need to get out more, but until then, I keep myself amused.
I must admit, I really really love my new(est) wheelchair. It goes relatively fast. On speed #4 it can keep up with a runner. Ok maybe not a runner but definitely like an elderly speed walker at the mall. I know, if you drive a vehicle this sounds lame but trust me, my wheels got umph. With a push of a button, the seat can elevate 7 inches, putting me at perfect eye level with my son. I have officially banned him from growing anymore. I must admit, I do not use this swanky feature as much as I thought I would.
Because one, it is slower then molasses flowing up a hill. And two, when the chair is fully elevated, it might be able to go a tenth of a mile an hour at top speed. The first time I tried my new toy, I was heart broken and knew I must now befriend a nerdy mechanic who can tweak the slowness problem. And three, my son, who has inherited my mouth and not my fear of parental figures, always insists on humming the theme to Star Wars as I magically rise.
Flipping through a magazine, an article caught my eye. It was about the wheelchair users vs. fast food drive-thrus, and the legalities of it. My first reaction was, that’s crazy. Second, why the hell have I never thought of that? Awesome. In 2009 a lady in Minneapolis sued White Castle for not letting her use the drive thru, she lost. This evidently is a real issue because Burger King even has it documented that wheelchairs are not allowed in their drive-thrus. Who knew?. On the flip side Jack-in-the-Box states that they will serve “Any vehicle with an electric motor.” I shall need to consult with my lawyer on that one because there’s a Jack-in-the-Box like a mile away from my house advertising funnel cake, if I leave now…
I have done some questionable routes on my wheelchair and bike, none of which shall be posted on the comment section, thank you very much. But I always had a good reason. Like, he made me mad. It was raining. The sidewalk had an overgrown tree root. And my favorite, that car had a very good tailwind. Luckily even in my dumber years, I was smart enough to befriend the area’s policemen, and I was still cute and amusing.
I don’t know if not being able to drive my wheelchair through a drive thru bothers me or not. In all honesty, ever since I transitioned into a wheelchair from a walker, I’ve had a phobia of rolling through a full parking lot. Sitting normally in my wheelchair, I don’t think I’m tall enough for cars to see me and I have this crazy fear of getting nailed. I’d never, not go out but I’m the annoying person that drives down the center of the parking row. I don’t actually think I’m a one crip parade, I’m just hoping that backer-outers will see me better.
So I personally cannot see myself going through a drive thru, unless A) it was the only way to get a Frappe or B) it’s a question of accessibility. I recently was at a fast food restaurant that I literally couldn’t figure out how I could get into. They had those double doors with a tiny tiny hallway in between. I can’t explain it very well but one door swung in and one door swung out so there was no room for me. It was the strangest thing. I could have probably gone around to the other entrance but the whole thing felt clumsy so we left, my hubby kicking and screaming after the manager kinda shrugged his shoulders at us.
In my opinion, drive-thrus should have the same policy for wheelchairs as they do for bicycles. And I am curious, what are the policies like at Sonic? Where all of the orders are placed from your vehicles? I think this requires some on the road research. One strawberry shake please.
When I’m having a bad day, all evil points to my cerebral palsy, luckily today is a good day. I have two big pending projects on the back burner simmering. Both seem to have promise. And I just found out that my husband is planning a surprise trip for me. I absolutely love surprises. Look at me, letting Bobby plan the whole darn weekend. I’m so not gonna micromanage the trip, telling him where I want to eat, (acme seafood) or suggesting he consider renting those electric motorcycle scooters thingy. He’s just so cute. Bobby so thinks I’m a control freak, like I’m totally not. I wonder if he made reservations.
Before my week got better, I was contemplating what I should write about for this blog. After much consideration, I thought I’d share my biggest beefs about having a disability. They may surprise you.
Not being able to walk is a pain but I guess since I was born with cerebral palsy, I don’t really miss what I never had. For the most part, I have done almost everything I’ve wanted, just in a different way. I’ve travelled; I snow ski using a special sit-ski. I’m trying to save money to buy a trike so I can do fun runs, eventually maybe the “M” word.
The biggest problem about not walking is transporting my 10 ton wheelchair. Ok, it’s not 10 tons but it’s not exactly portable. Meaning in town, we always have to go in my ride and we when are out of town, we have to rent an accessible vehicle which is usually three times the cost of a standard car. On the positive side my wheelchair can go about 6 miles on one charge, I can run my son into the ground on any given outing. Except of course for the time I sorta forgot to recharge my batteries for days and got stuck at the very back of my parents’ 13 acres property. My son & hubby giggled like little girls when I had to ask them to “rescue” me. Because I’m stubborn, I would still be out there except I’m deathly afraid of ticks, snakes and the neighbor’s bull that doesn’t always respect fence boundaries…
My lack of coordination is a pain but for the most part, daily life runs smoothly. Although I do think that in an alternate reality I’m a brilliant chef and I’ve built a luxurious log cabin in my spare time. I enjoyed cooking, til my 5th ER visit when my insurance company said they would no longer cover stovetop burns or knife cuts. Of course I’m kidding, Bobby never let it get that far, despite my occasional attempts. For the most part, I create recipes and my boys make the dream come to the plate, may I say, only a few dishes have been disastrous. A few have even become house favorites.
I cannot explain my channeling Bob Villa every time we go to Home Depot. But with each step down the nail isle, I feel the growing urge to home improve something. Sadly, my husband seems to have a much stronger will power, not always able to hear the call of the hammer. Worse, in a home improvement emergency, he knows what to do. Like a pro. Bobby just chooses not to use his super powers voluntarily unless begging, bribing or threatening to hire a cute handyman is involved. Combining my two secret passions, I am currently planning my greatest project, building a deck with a gourmet outdoor kitchen. To start out with all I really need is wood and a nail gun with a safety right? Bobby is never taking me to home depot again is he? Luckily for me, they deliver lumber, yes I checked before writing this.
Not walking and my lack of being able to cook a descent soufflé is kinda a bummer but surprisingly my biggest beef with having cerebral palsy is my speech. Maybe not in my world, nor within my social circles, but in general, it makes trying to find a job, almost impossible. Most people are too impatient to listen to a typed text turned into a monotone computerized voice. Hell even my friends rather listen to me babble than a computer voice, and if you have heard me babble, that’s saying a lot. And as fabulous as those relay operators are for phone calls, I have had many people hang up on me, thinking it was a telemarketer. And I don’t think you can necessarily blame people for that. I think that’s why I wanted to become a writer, I thought my written words would pave my solid employment path in life. But then again it was the 80s. I also thought leg warmers were cute.
Overall I think I have a pretty good attitude about having a disability. Although I must admit, the older I am, the more it feels like a bigger hindrance in trying to reach my life’s goals. I appreciate the loving lectures of trying to be happy with what you have and all that but I’m just trying to keep up with the siblings and cousins. I don’t see my handicap as an excuse not to have high, but I don’t think, unrealistic expectations for myself. You can’t help what you need to feel complete. And for me, it’s to have a successful career. I’m already the perfect wife, mother, and friend. This would complete me. If people don’t want to listen to me, maybe I should get a megaphone. My husband and son will absolutely love that. (in case there was the slightest doubt… last 4 sentences OOZES sarcasm. Oozes.)
Despite my outgoing personality in my blog, I really don’t like upsetting or offending anyone. I personally think it’s a little sad that the older I get the less confrontational I am. Now my husband and his two buds might debate this, saying I have to argue about every movie choice and every rule to a game they seem to pull out of the air. And in that instance, I must confess I am an argument instigator just because they are so darn cute when they are at their wits end with me. It’s not a good game night until one of them yells at me. But generally speaking, I think I’m a bit co-dependent, and making everybody happy seems easier to deal with then trying to make my point.
Kinda like asking “how are you?” Most people just want a simple, one word, positive answer. I take great comfort in the fact that I have two best friends I text a zillion times a day and they do not accept one word answers because they assume when I’m not ranting that I’m either, sad, mad, or depressed; like I’m that needy and predictable, whatever. (hubby says my “whatever” is my closing case in every losing argument…) Whatever!
I have two requests from readers this week. Doesn’t that sound cool? I have readers. The first was to please consider writing a more serious blog about important disability topics. Ok, this was an easier one to turn down, because between us, that seems like actual work and planning and thinking, so absolutely not. That’s just crazy. I’m kidding. But in all honesty, in my life, I have so many voices that have to be censored to avoid conflict, I just enjoy writing a blog that is sort of my stream of consciousness. And if I can make a few people laugh maybe they will see more of me, and less of the steel framework around me.
The other request made me cry. I was already having a bad day because I reacted too quickly to a situation that still had the potential to be salvage, but really hasn’t yet. Yes that was meant to be cryptic and to my husband who is still waiting for an apology, that’s about as good as it gonna get. But I digress. A reader asked if I would stop using the word “Crip” because it was what bullies called them in school.
My initial reaction was of course. Because I do care about others and I know it sounds like a cliché but it does keep me up nights when I know I hurt someone’s feelings But after contemplating it, I wanted to explain why I probably won’t. Of course the word Crip is banished from my disability etiquette class and I’d never roll up to a stranger and yell “Whatssup crip” But this is my personal blog and I’m referring to myself as Crip, no one else. And since I am going through a midlife crisis, this is one of the kinder terms that bounce around in my head.
I have a friend I made in college. He will probably be a pall bearer at my funeral. I’m not being morbid; I just mean he is one person I shall know for the rest of my life, even though our lives are not always in sync. I wish I could say we chat daily and text frequently, but we don’t, yet somehow our paths always meet at all the important crossroads, Christmases, weddings, and births of children. Besides that, not so much, we “like” the weirdest status comments on each others facebook pages. And oh yeah, he sings to me on my birthday, like clockwork. (yes, that was a shameless reminder.)
We have really cute pet names for each other, he calls me Crip. And I call him… I call him… I actually can’t tell you what I call him. Because 99% of the world thinks it’s a derogatory term. And I’ve actually have never said it to anyone else. I told my son if he ever uses it, I’d wash his mouth out with soap. My husband once asked can he… I was mortified. No.
But just between my buddy and I, “Crip” is a term of endearing love. The term reminds me that even if he’s 3,105 miles away, he was one of my first friends who got my whole being, and for the most part, liked me, even or especially my dark-conflicting self-awareness side very few have seen, and most try to “fix”. And to have that kind of unconditional acceptance in a pet name is something I’m not willing to give up.
I really do believe in freedom of speech, especially if I’m not poking fun at anyone but myself. I’ll never call anyone crip. Because most of the time it is use with malice, I will stand up to any bullies who are cruel. But for me, in my personal blog Crip is a term of endearment from friends who have seen both the best and worse in me, yet still like me. And that’s kinda cool. Just my thoughts, for I be Thecpchic.
When Oprah interviews me for winning blogger of the year, I’ll have to come up with a better story. Like my blog idea came to me in a dream. Or I’m just a giver, trying to save the world one reader at a time. It was far more narcissistic then that. I was having lunch with a friend and she goes “Hey, I read this article about a lady who sold her blog for a million dollars. She wrote about pets, kids, and boobs.” While fingering my cold fry I thought about her words, “You think if I did that, we could eat at Fogo de Chao every Friday.?” “Yup.” Tempting… and let’s face it, I currently do not have anything better to do. Plus good food is a great motivator. But if Oprah asks you, I was inspired, yeah, inspired by greed and food.
In the fictional article that I just made up called “Blogging for Unemployed Crips Who Long to Eat at 4-Star Restaurants More”, the majority of advisors say write about one thing. So I decided to write all about cerebral palsy. Every week. Hopefully it will grow into a daily blog about my cerebral palsy. I can do this. What? Seven blogs in and I’m already ready to shoot my muse who keeps suggesting we can do one disability etiquette a blog. That’ll be a thrilled. How many times can I say, people, in general are rude, insensitive, and need to think before speaking to, or more likely, at me?
This line of chatter in my head pushed me to wonder does my cerebral palsy define me or is it just a characteristic? I’ve been told on more than one occasion by two people who know me best, that my handicap makes me humble, accessible, and if I wasn’t I’d be a super gorgeous force of nature, too good for the likes of them. After I recovered from that backhanded compliment, I agreed with them that disabled or not, I am way too good for them. But by this time years have passed in our friendship. It was too late to take their pictures down from my wall, besides it covers the hole I accidentally made. Hammers and spasms don’t mix.
My epiphany, besides the fact that my two best male friends are incredibly self righteous and arrogant, is that maybe I should just write what pops into my brain and just let my “normal” and my “disability” voice battle it out. Luckily my inner crip voice is much sexier than my outer crip voice. Although I’m not sure why it currently sounds like Al Roker impersonating the wrestler announcer deep throat guy. “Sunday, Sunday, Sunday, Claire the CripMister…” Maybe that’s a really bad idea. My first “spontaneous thought” was Al Roker? Maybe I’ll just write about the first sane, rational, thought that I can share with the public. That’s sounds like a good plan in theory.
So the two things inhabiting my brain this week are: Are ships haunted? And will my daddy let me play, I mean, use the heavy farm equipment? Sadly I’m not making these up, no one is that strange. These are very valid questions at this time in my life. Really. I can prove it.
My son is going to spend a night with his boys scout troop on a retired naval ship. Mouthing off to my husband, which I do frequently, I said “Hey I heard ships are haunted.” My husband is the yin to my yan, he’s very analytical, very logical… where as I am… yeah. So I was horrified when he said “yup”. And walk off. I didn’t ask what he meant and he certainly didn’t offer a longer explanation. He left me stewing, he does that often. He’s just jerking with me? Right? He wouldn’t have signed a waiver, allowing our only child to spend a night on a haunted ship? I can’t dwell on this, I’m sure he was kidding. Please no ghost comments until Sunday when my son is safely rattling around the kitchen “dying of starvation” and all is right in the human world.
The other thing haunting my brain is the idea of digging, I really think I’m a tomboy at heart. My dad, husband and nephew are going to dig 100 holes on Saturday to be filled with 100 pecan trees next weekend, which maybe a future blog. How TheCpChic inherited a pecan farm, but for now Al Roker is still announcing “Claire digs digging.”
I think it is my duty as a daughter to help my dad dig the holes, because I’m a giver, Plus they are renting a really cool twirling-digging-hole-machinery, I know, my terms of farming equipment is astounding. Don’t you think this would be a cool thing to try? Just cuz. I shared my master plan to my husband. “I know I’m, unbalanced, easily startled, and not very excellent working with mechanical doo-dad’s but I think if I position myself right, wear both hearing protectors over ear plugs I really think I can work the motorized jack-hammer looking thing-a-ma-gig.” My husband just sighed and walked away. At least he left the conversation up for discussion. I’m so mentally marking it down as an argument win.
I’m not sure how a blog about cerebral palsy leads into questioning supernatural ghosts haunting ships but my mind, what a scary place. But I’m TheCpChic and this is the sometimes odd life living with cerebral palsy.
My friend sent me this interesting article about the Jerry Lewis Telethon. He thought it might make for an interesting blog. Let’s hope he’s right. Before I read the article, I decided to search my brain to determine if I had any factual knowledge of this event, to my surprise, not so much.
I must admit that I know little to nothing about the telethon. I did recall that it annoyed me as a child. Remember when there were only three channels on TV? A 24 to 48 hour show of people sitting on a set of risers talking on the phone was just too much for me, however noble the cause was, especially on a holiday TV watching weekend. But even at a young age it seemed like such a worthy cause with such a recognizable figurehead.
I think I remember watching a few “on the road” movies starring Jerry Lewis with my mom. I know his famous whinny line is “Hey Lady”. I know for some reason he has reach godlike status in France. And that’s about all I know about Jerry Lewis.
Oh, I do have one Jerry’s Kid story. In college we were out one night shooting pool at a gay bar. I just wanted to make that statement for the shock value. A few of you will be surprised that I hung out at gay bars. But the majority of you, especially if you’ve seen my disability, will be mortified that I was actually trying to play pool. Amazing how one drink can make you feel like you can do anything.
So this guy comes over and starts staring at me, which may have been more flattering in like a straight sports bar but… ugly girls can’t be choosers. We tried to ignore it. But he kept on staring, moving towards me, then suddenly says rather loudly… “Hey, your Jerry’s kid, did you get the money I sent? You are so damn cute.” It kind of made me laugh, although my companion was a bit less amused. My fan continued to go on and on about his donation, slowly inching closer into our well marked personal space, now even offering to buy me a drink. The conversation escalated and my fan was asked to go away by my now irritated companion.
Luckily my fan’s drunken attention span was as short as a nat and when pointed in a different direction, he soon found other fixations. But for that moment, I was a Jerry’s Kid. Looking back on it, if I only knew that would be one of the last times I’d be called cute, offered a free drink by a stranger, I might have been a little more open, ya know. Cerebral Palsy. Muscular Dystrophy. Whatever. I could have accepted the drink for people with disabilities in general. I’m just a fine negotiator like that.
Reading the article, I was very surprised to learn that for all the good the telethon has done and for all the money it has brought in, it has also raised much controversy over the years, starring Jerry Lewis. He has been accused of saying very inappropriate things. In 1973 he held up a child with Muscular Dystrophy and into the camera he says “God Goofed, and it’s up to us to correct his mistakes.” Another notable quote is “crippled children deserve pity.”
Really Jerry? I am the queen of humorous politically incorrectiveness, but even though the “god goofed” was made over 35 years ago. It made me cringe. And I’m usually un-cringable. Despite suggestions, pleads, and a few organized protests, Jerry continued his politically incorrectness throughout his hosting gig. The critics panned Jerry’s over the top crying behavior as he paraded kids across the stage, while sobbing and pleading for pledges. There were even critics within the Muscular Dystrophy Association. Some felt the telethon was a great misrepresentation of their clients, since 2/3’s of their members were adults. But in my opinion, the cruelest mistake Lewis’ kept making year after year was saying that “We are closer than ever to finding a cure.” There is no cure. Hearing this might give someone false hope, and that just seems unforgiveable. For as many of the years he was the host, he should have known the facts.
I have never met Jerry Lewis but I assume he’d fall into my “accepted” category. I think we all have someone like that in our lives. Maybe an elderly relative you grew up worshipping. When you were old enough to realize he was a stereo typing raciest, he already lived in your heart so you just grinned, bared it, and loved him just because with all of his faults, he truly loved you. I’m not saying it’s right, I’m saying it just happens.
I’m sure this will be a very unpopular opinion but except for the “finding a cure” comment, I’m not sure that he has really committed any deadly sin. He’s an actor whose performance accomplished the goal, and I assumed was invited back yearly bases.
But his reign has ended. I am glad that, for whatever reason, Jerry Lewis is no longer the host. I do think that people with Muscular Dystrophy deserve a more knowledgeable host who chooses his words more thoughtfully. But I can’t help but wonder if people tuned in year after year, to watch Jerry’s theatrics. If so, and if donations suffer, that would be the true tragedy.
P.S. Mr. Lewis, I personally am not that offended by” crippled children deserve pity”. If you want to start your own telethon, something like “Crippled Adults deserved cushy, high-paid jobs” I’d be happy to be your poster middle-aged- adult.
Saturday I made my annual trip to the promise land, otherwise known as the Abilities Expo. I love going. You know how every year Neiman Marcus puts out their Christmas catalog, its kinda like that. Just with a few “health” and “informational” booths thrown in the mix.
I’d say there were about 300 vendors, maybe more. My only true complaint was that, among the informative booths, I only found one for employment assistance and that was a government agency. I am just a little puzzled because it feels like there are so many employment agencies out there specializing in placing different types of people, white people, black people, blondes, brunettes, nerds, aliens with green scales. It’s sad to know there doesn’t seem to be a reputable for profit headhunting service for folks like me. There are tons of disability websites that allows you to post a resume. This isn’t what I feel I need and I could be wrong, on very rare occasions I’ve been mistaken, but in my travels, I have yet to meet a headhunter who will actively seek quality jobs on my behalf.
Then, in the midst of the crowd, it came to me. Someone here should hire me as a sexy car show girl. Y’all know what I’m talking about, those tall girls in slinky shiny short dresses that seductively lean against vehicles that spin under spotlights at car shows. I’d say 15% of the Abilities Expo was modified vehicles. Where are the showgirls? They could perch mid-ramp. Better yet, there’s a lift that raises a wheelchair. How cool would that be having a crip-chair girl 3 feet off the ground, spouting off vehicle dimensions?
Plus this could be a very good distraction for my husband as I laughingly inquire about the price, bringing me to my next moment of painful reality. How much is this van? Not the cute speedy red convertible I drive every night in my dreams. The standard minivan with a foldable slightly cumbersome ramp in the rear, this is my mama’s mini-van. That much huh? I never knew buying a modified vehicle might have to go on my bucket list.
Maybe I should write a letter to Santa because the isles of the expo were filled with gadgets and gizmos I absolutely cannot afford, absolutely can live without, but would definitely sell my husband for. One was the robotic arm. I didn’t even inquire about the price. What’s that saying, if you have to ask… I just saw a short demonstration, I think you can mount it either on a table or your wheelchair and program it to perform fine motor skills functions. Does it have any practical applications in my life? Absolutely not, it’s just really cool.
Then there was a tank wheelchair. I’m not kidding, it looked like a wheelchair with tank threads stuck on the bottom. Kinda like a jacked-up low rider lazyboy. For 5 minutes I thought for sure I’d die if I didn’t drive this out of the expo that day. I could use creative rationalization to argue I need this. My folks have 13 acres out in the country. This would make their whole place totally accessible, especially that one very deep rut where I may or may not have left the golf cart’s transmission. I was slapped back to reality when I accidently saw the price. Crip rule #47, your “spare” wheelchair should not cost more than your “daily” chair.
The other thing Santa could bring me is the wheelchair mount. It holds iphones, ipads, cameras, fishing poles, probably even a purse. My husband has been looking for one for years and has never found one he’d considered steady, durable, and flexible enough to buy, until this. We bickered. He said it was twice as much as he would pay as a spontaneous purchase, I thought it tripled my budget, even on a good payday.
Sometimes it feels like as a person with a disability, in order to live comfortably, our cost of living is higher and our employment opportunities are lowered. In another words, I’m screwed. But all was not lost. There was one booth at the expo that always made me secretly feel better. I told hubby and son I’d meet them for lunch in 15 minutes to feed my stomach, before then, I’d feed my ego.
They always courted me, this one booth. I drive by and they always call me over. They tell me how pretty I am. They only do this to me, not the other 800 ladies that walk by. Just me, I know it. Because I’m just that gorgeous. They want me to join their little sorority. Of course I couldn’t, could I? But it was my duty to go by, encourage them to carry on without me and remind them they have my support.
Pass one, not even a wave. Maybe they didn’t see me. I owe them another pass by. Nothing. No courting, no offering a flyer, not even giving me the obligatory free mint. I stormed off totally offended. Now I was feeling not only unemployed and poor but ugly. I wasn’t gonna join the Wheelchair pageant circuit anyway. And they could keep their free mint. (in full disclosure, I’m just being funny. I thought an old friend was working the booth)
The touring part of the expo had come to an end and I could now drown my sorrows in a big ass BBQ potato. Luckily the expo is like childbirth. You soon forget the pain. I had a lovely morning with my boys. I did buy a cool cup holder that I’ve been searching for for eight months. And I can’t wait to do it all again next year.
Although at this point in my life, I’d kill for a corporate job, my true passion is teaching disability etiquette mixed with motivational speaking. For a while my husband and I had a steady gig at a police academy. I was always amused by the shift in attitude from the beginning to the end of class. When the students enter the classroom, most of them introduce themselves to Bobby, assuming he was the teacher. You can almost hear the gasps as Bobby announces he will be the interpreter for the next two hours and I was the instructor. I’d say, usually by the end of class, maybe 75% of our students felt comfortable enough to talk directly to me, even offering to shake my hand.
As a communications major, I really was intrigued learning about personal space and body language. It seems like as a person with CP, the polite etiquette for personal space goes out the window. Or as my son constantly reminds me, I’m a mom, I lost the right to my personal space, as he climbs all over my wheelchair for no particular reason. As a toddler this was so gosh darn cute. I worried one day he’d stop. I’m still waiting. He’s a wonderful pre-teen but frankly, not so cute as his dead weight now drapes my wheelchair. But if this is the worse thing he does, I’ll take my very loved however smashed bones to my grave.
Aside from my son’s inability to respect my personal space, which I secretly love, occasionally well meaning strangers push the limits of my polite understanding. It ranges from tiny things that make me pause, to the sometimes annoying and downright strange.
We were at Sea World one Saturday. And as I exited the crowded restroom, a lady leaned over and patted my head. Then she just walked away. I don’t know why. It happened so fast that my friends said I still looked stunned when I found them. I actually do not have any clever conclusions about this, it’s just one of those things that falls into Arsenio Hall’s things that make ya say hmm…
Many years ago I ran into the grocery store while Bobby stayed in the car. I kid you not, from the moment I walked in, I felt eyes upon me. Some people attract stray dogs, it seems that I attract stray grocery boys. He followed me up and down each isle. I tried to smile and wave him away, which only made him come closer. I tried to avoid eye contact at all cost because every time my eyes met his, he assumed I was silently asking for help.
By the time we reached the check-out, I felt like maybe we were soul mates, although I did look for the nearest exit, not so sad that our time had come to an end. As Bobby was loading up the groceries, the young man came to him, retrieved the grocery cart, and said to Bobby “She did very well. You ought to be proud.” Kinda patted my arm, and skipped off, finishing his good deed for the day, leaving Bobby and I amusingly speechless.
I have these small things happen constantly and most of the time I can shake it off, but there have been a few times where I’ve been really upset. My husband and I were wondering through a flea market. This elderly lady approached me and tried to put a crossed on my head. Keep in mind, I’m catholic with a Buddhist mom, married a Baptist, have two close friends who are atheistic, a few Wicken friends, and everything in between. And they all believe in me, therefore I celebrate and respect their love and religious views. but it’s really creepy when a stranger comes at you with a cross. I truly believe she had a wonderful soul, just a poor understanding of personal space. And I bet she just looked at me and assumed I wouldn’t know or care.
For some reason, as we become adults, for most of us, our personal space becomes better defined and respected. But sometimes I think because I’m disabled, people are less respectful of my space. I have a friend in a wheelchair. I tease him because he’s gorgeous and I say that his hotness hides his chair. And even though he looks “normal” (as oppose to my spastic face.) people feel the need to push him in his wheelchair, without asking.
I’m a hugger by nature, I’m a big goofy flirt. I always hug my best friend who lives five houses down, even if I see her four times in a weekend. Most of my guy friends kiss me on the cheek. On rare occasions I let my hubby hold my hand. So overall I think I’m quite lovable and affectionate, but before entering the crip realm, at least introduce yourself, buy me a drink. I got standards too. Until then, strangers, please don’t pat, pet, or touch me. Unless you’re Bradley Cooper then feel free to.
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