Today I am reminded that I am lucky. Even though I was born with cerebral palsy with the exception of my orthopedic surgeries I have only been hospitalized for “normal” things, pneumonia, strep throat, the flu. My immune system isn’t exceptionally weak, in fact, I am almost never sick and I have never even come close to organ failure, thank goodness. My cerebral palsy did not come with a long list of other diagnoses, things to complicate and maybe shorten my life. So most days I forget that my CP reality isn’t everyone’s. Then someone who also has CP dies and just how lucky I really am shows up in the stark black-and-white newsprint of the obituary column.I often tell people that just because I have cerebral palsy doesn’t mean I know everyone with cerebral palsy in the state. I don’t know everyone but I do know a lot of people from my age group. I didn’t know Kimmy Jones as well as I might have even though we went to the same college and summer camp but I do know that she made a lot of people smile and laugh and as far as I know never did anything but inflate and enhance the lives of others. That is the best any of us can hope to be remembered for when we die.You will be missed, Kimmy.
I am disabled. Over the years I have called myself many things cripple, gimp, and spaz as well as physically challenged, physically disabled and mobility impaired. I find it amusing how many people(specifically able-bodied people) cringe if they hear me use one of the less than politically correct terms. Quite frankly I don’t particularly care which term someone uses as much as I care what tone of voice that was said in. Believe it or not even the more whitewashed terms can come across as a dirty slur with the right inflection. A friend of mine recently wrote that a friend of hers had caused her to consider how her disability might actually indeed define her and that got me to thinking as well. Some forms of “person first speech” don’t bother me. Person with a disability and wheelchair (insert relevant aid here) user don’t bother me at all. It’s when people start using things like “happens to have” that I think it’s just getting silly. Trust me my disability is not something as arbitrary as a wardrobe choice or the pictures that hang in my apartment. It’s an integral part of my identity whether I like it or not. That being said it’s not the end all and be all of my existence. I am someone’s daughter and sister, someone significant other, a writer. I would be all those things even if I want in a wheelchair every day of my life. Does using a wheelchair make my life different than it otherwise might have been? Of course it does. When shopping I choose to spend my money in stores and restaurants that are easily accessible and accommodating of the fact that most of the time I have a service animal with me. If it is difficult for me to navigate through your store with my chair or you give me hassle about my dog chances are very good that will be the last time my cash will become part of your revenue stream.
Does it influence my writing? The short answer is yes and the long answer explains why. People look for others like them to use the frame of reference for what society expects of them and how they can be expected to be treated by others. I was about eight years old when I first noticed that there weren’t many people with disabilities on television, in books, movies or glossy paper magazine ads. So I began a search and I discovered something very sad. When they are is a disabled character in a story he or she is often blind or deaf. It seems as though people in media bring the most attention to those portions of the disabled populace least likely to remind people of their disability. Yes a blind person can use a cane to navigate and a deaf or hard of hearing person may use hearing aids but for the most part their “otherness’ is a lot less in your face then Cerebral Palsy or a Spinal Cord Injury might be.When I pointed out this imbalance to my mother she said, “You’re right.So when you write your stories write the characters others don’t.”
Does my disability have any bearing on my favorite color or my favorite food? Nope not even a little. My music taste would be the same. Does my disability define me? Yes, but so do lots of other things. Humans are complex complicated who, for all the wonderful things that we can do only use one tenth of our brain capacity. Letting one word define me seems as silly as the fact that we actually use less than half of the space in our brain to exist.if I am a painting my disability is my nuanced shading
I hope the link works. It’s a TED talk given by Maysoon Zayid a comedienne born with Cerebral Palsy. It’s great on so many levels. Her talk brings up many good points that I agree need to be more openly talked about so here are a few thoughts I have about my experience living with Cerebral Palsy and also just for something a little different, why I think that the way some people in this country treat Middle Eastern immigrants and their children is shameful. Cerebral Palsy stuff first though.
Like the lady said, it isn’t genetic and it’s not something anyone can catch by hugging me, shaking my hand or bumping into to as w pass each other There is no need to walk on the other side of the hallway or street.
CP is different for every person living with it. Maysoon can walk, I can’t. I can speak and express my thought as clearly as someone who isn’t disabled. Lots of people with CP use communication tools. Some are as simple as pictures on a tray they can point to and some as high tech as a computer that is controlled by a person’s eye (yes eye!) movements with a text to speech program that speaks . Conversation wit a person who uses such a device is possible but will probably take a little time., be as patient as you can, it will be appreciated.
On a related topic if you see someone who uses a wheelchair, walks with a limp or a cane or a walker etc. don’t make assumptions about their mental capabilities. Same goes for people who use communication tools or someone who has trouble speaking clearly.
It isn’t uncommon for people with CP to sound younger than they are over the phone,, if you ask someone if they are an adult and they assure you they are at least behave as though you believe them, calling someone a liar over that kinda of thing is never ok. I once had someone accuse me of lying about my age when I was taking down his message for my parents. That was not his brightest moment and boy did he regret it later
A note on service dogs if you see someone in a store. If you see a disabled person in a store with a dog, do not call to, touch or otherwise try to interact with dog. It’s just plain rude, an invasion of personal space, and distracting the dog could put the person in harms way.
My friend who posted the TED Talk to Faceboook is half Pakistani, her mother moved to the US in her twenties and both my friend April and her sister were born girls were born here. Both girls take after their mom a lot, which is to say that if saw them standing with just their dad you probably wouldn’t think the were related.
At least a year after 9/11 April and I were walking and some random snarled “go home terrorist” or something equally nasty as he walked past based on nothing but her skin. I was livid, that person didn’t even know her name and felt justified in naming her a terrorist. As a s side note April has CP as well, though mot a wheelchair user she does walk with a pronounced limp.
Hate is just fear under a magnifying glass. If people put away their fears I bet they would find more in common with ether than they thought.
When I was very small I pointed my my toes all the time. If I could have stood up at that age I would have been standing very close to “on point” like ballet dancers can. When I was four years old it was decided that I would have surgery to make my feet appear normal. After the surgery I could no longer pointing my toes at all and if anyone manipulated either of my feet into that position it was very painful. Because I now have completely flat feet standing is difficult because I lack the balance being able to point your toes can give you and I can’t manage transfers on my owns 99% of the time. For anybody unfamiliar with rehab therapy language a transfer refers to moving oneself or a person from a bad to a share, from a chair in the back etc.
I have asked several doctors over the intervening years if it was possible to do something that would at least give me some of the ability to point my toes back and therefore improve my balance. For the last 10 years I have always been answered with an unequivocal no. After I broke my legs several years ago I asked the orthopedic surgeon who repaired them the same question, expecting to get the same answer I always got. To my surprise he said he thought he could improve their function but requesting that I let him get my legs healed before having that discussion. It wasn’t until well after my legs were healed I discovered, upon calling his office to set up an appointment to talk about my feet and ankles, that my insurance usually does not cover his services and the only reason they had before was because he had been the sergeant on call at the hospital nearest to where I broke my legs.
I recently filed for an exception through what I guess is in simple terms would be the patient’s human resource department. It was denied on the basis that “they had equally qualified surgeons in their network.” It has been my experience that just because a group of people hold that particular diploma does not mean that everyone within that group is equally skilled. It is possible to pass courses with a C average and still get a diploma and any accompanying title but that does not make you the equal of the top student in the class and that is exactly what I told the person on the phone. I will go talk to the doctors but I fully expect to hear more of what I went I have always heard. If I am right I will then contact the doctor who fixed my legs and request that he contact me insurance directly and tell them that he is able and willing to at least mitigate the problem with my feet. I’m really hoping that will help.
Dealing with insurance companies frustrates me because I am pretty sure in most cases the person passing judgment on whether or not to pay for a particular treatment has not had to live with the condition or disorder the treatment is meant to help. Insurance companies would probably be a lot different if the person making decisions have to live with a restricting condition themselves
I have lived with Cerebral Palsy my entire life. I have been the recipient of outstanding care for medical professionals, horrible care that I wouldn’t wish on my worst enemy and everything in between. I know what I’m talking about. If I request a specific person is because I truly believe they are the best at what they do. I will not stand for substandard care or treatment of any kind. I will go see the three doctors that my insurance assures me are equally qualified and if one of them will agree to fix the damage inadvertently done to my feet I will let them. If not I will raise Cain with the insurance company until they pay for the doctor my choice to do the surgery he said he can, or until I move out of state, whichever comes first. I refuse to let any insurance company dictate my life and independence.
l was browsing Amazon.com for books, both paper and digital since I received a Kindle for Christmas. Imagine my surprise when I discovered the biography of someone affected by Cerebral Palsy. In the excerpt provided by the web site the person was described as a “victim” of Cerebral Palsy. They use out of the word victim to describe this person made me angry enough that I immediately clicked on the next page of book results without bothering to read any of the other information on the book. I dislike being labeled a victim of my disability just as much as I dislike people’s insistence that I “suffer” it. I am not a martyr for any religion, do not use those insipid words as a salve for your smarting consciences.I am not a victim of anything, my disability is merely something I have to live with. I suffer from nothing, save perhaps the unrelenting, ever present pity of absolute strangers who know nothing about my life and therefore make an assumption that I suffer under the irrepressible weight of this awful malady.Yes I do cry, screen, and rail about the unfairness of my life sometimes. I will even admit that it has been more often than usual lately due to the fact that my antidepressants have not been up to snuff for quite a while. Everybody yells at how unfair life has been to them at some point, even if it is only an internal soliloquy,this does not mean that they inherently suffer the entirety of their lives. I am affected by my disability yes, suffer from it,I don’t think so. Am I being a little oversensitive? Probably. Do I sound a little more than defensive? Definitely. I have a question for you though, just one, and I promise to be out of your hair for the rest of the day.How many times have you felt mislabeled, like the lone can of fruit cocktail sitting next to hot cocoa mix in the powdered drink mix aisle of the grocery store?
As I stated in the previous post I am disabled. I’m old enough and cognizant enough to be a fairly autonomous adult, at least that’s what I work on people acknowledging, it’s a difficult concept for some of my family to grasp though.Since I am older now and she has survived raising my mom has become something of an impromptu mentor for people with school-age disabled children. Recently she befriended a woman who has an elementary school age little girl with cerebral palsy which is significantly more severe than mine. I do not know how old she is chronologically yet because I haven’t met her but she has the approximate mental level of a five year old. The special education teachers at her school (a school which I too had the misfortune to attend) has made very few if any attempts to teach her to even recognize her alphabet, a task which her mother believes is well within her capabilities. It bothers me that somebody who is supposed to be an “educational professional” thinks that just because a child is nonverbal as this woman’s child is means that they are incapable of learning even the rudiments of communication. I had thought that the first thing they taught special education teachers in college was to leave preconceived ideas of how people learn at the door. If it isn’t it should be.
I am not sure why but I feel like I spend most of my life waiting for things to happen. I’m not talking about just the relatively large things then everybody waits for, like moving out, or getting a job. I have to wait for even the smallest things to be done. I can’t decide when I get up on a daily basis. Because I have cerebral palsy I have a personal care attendant that comes to the house during the week. This is not saying that the schedule is totally inflexible, it’s not, but it is nowhere near choosing to hit the snooze button and rolling over. I don’t think I would mind waiting for the bigger stuff in life if I didn’t have to wait for the tiny details as well. I fully expect that by the time everything is said and done I will have driven everyone I know thoroughly insane.If you know me I apologize in advance for myself. It you don’t, just this once be thankful realized that not everyone reads this blog knows much about me beyond what I choose to write here. I have recently discovered a nifty program that WordPress has begun supporting which looks up related pictures and articles based on the text of the entry. Therefore, for anybody interested, I leave you with an article on cerebral palsy found through Wikipedia. Just in case you’re wondering, the picture was captured with the search engine as well, it’s not anyone I know personally.