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.
Part of the Zero to Hero Blog Challenge
Olga Spessiva in Swan Lake costume, 1934 / photographer Sydney Fox Studio, 3rd Floor, 88 King St, Sydney (Photo credit: State Library of New South Wales collection)
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.
Image via Wikipedia
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.
Image by Cambodia Trust via Flickr
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.