Despite the last post (with my letter to the Governor,) it may surprise you to know that I am not very political. Or maybe it won't...I haven't made it a secret that I try to avoid the news! It seems to showcase a never ending battle between political parties that only increases during each election. As the problems with health care continue, those arguments are on the tip of everyone's tongue. So my plan to write about our country's health care system surprisingly does not come from having a political background, but rather from frustration about the ongoing arguments, and the things that have still not changed And how do I know that our health care system is lousy? I only need to step out into the world to know that! I've come to this estimation the way I find out anything newsworthy...through word of mouth. And the word is NOT GOOD.
I could make this post about finger pointing, bad mouthing, and constant arguing...who's at fault?? Republicans or Democrats? Who caused all this nonsense?? Did he do it? Was it her?? Yes, I could go down that road...and would end up in the same place we always end up, when the fighting never ends and the changes never come. NOWHERE. So I'm not going to waste my time, or yours. Because, quite frankly, who CARES?? The fact of the matter is, our health care system is not doing its job. It doesn't really matter who's essentially at fault or if it can be blamed on one person, or a political party...what matters is that we move forward and FIX IT. And things do need to change. Being a person with a disability you can imagine that I may have more physical needs than others. I think I mentioned before how much my braces cost! I'm not going to kid myself...there will be more costs in the future, and the thought SCARES me. To the point where it keeps me up at night. This is something that can't be helped, and yet...there's a certain level of guilt you are made to feel when a new cost comes up. And a huge amount of frustration that is dumped on top of the guilt. When I think of the issues I've had in the past and the struggle I faced in getting adaptive equipment covered, it makes me shudder...and I think I've been pretty lucky. In the end I was able to get 40% back from my initial brace expense, and I am amazed I even got that much! I hear other people's stories and realize that many are still fighting their medical/financial battles. Stories such as the one my friend M (who has CMT) told me, where her insurance company assured her that "Yes...your leg braces will be covered!" and so she was fitted for them...I mean, what choice did she have? And then she was mailed a denial of payment for ridiculous reasons such as "You didn't give us your middle name...DENIED!" and "You didn't give us your address...DENIED!" (Is it just me, or did anyone else wonder how they managed to mail out her denial in the first place if they didn't have her address?) And that's only the beginning...M followed the protocol, filled out all the forms and had her doctor send them proof of her need for braces...only to finally be told by the insurance company that she KNEW better--they were NEVER going to cover her braces and she shouldn't have asked in the first place! Can you believe that? And after all of those disappointments, she still hasn't seen any reimbursement for necessary medical equipment. I see denials of payment such as this every week, as I work in a medical office. And it's pathetic. The hope seems to be that the person being denied will eventually give up, and GO AWAY. And in most cases, that's exactly what happens. The sad fact is that people with serious medical issues and serious physical needs, who truly need medical insurance coverage, are (in most cases) not going to have these medical problems go away anytime soon. It can be difficult enough to face a life with these issues, and shell out incredible amounts of money to try and improve your quality of life, only to be denied assistance from the very insurance you count on. And the fact of the matter is, I know if I didn't pay all that money to get my braces (an amount that makes my EYES cross) I wouldn't be able to walk. Or drive. Or work...at ALL. And neither would the people I talk to, who face the same challenges in life. I could pretend that there were no options out there for me, and deny the fact that the braces make me a functioning member of society...but in the end, wouldn't that be worse, and cost the government even more money?
I have attempted to get more help, from agencies that are supposedly available to me...and you know what? I did just what they were hoping...I gave up, and went away. One experience comes to mind...the time when I accompanied my father to the County Offices to apply for food stamps. I didn't want to go on food stamps, though according to the information we read on-line I qualified for about $126.00 a month. Seeing as how I struggle to pay my monthly bills on what I get from disability and the small amount of hours I'm able to physically work, I decided to give it a shot. Three hours later I was hoping I could be shot, as a quick and easy death would surely save me from the back pain, anger and frustration I was feeling! As we sat and waited, I saw some things that made me question where our world is headed. One was this woman not much older than myself, who bounced into the waiting room with a smile on her face...she greeted several people already there, yelling across the room about how she was doing, asking after their health. Boy, she was lively! Soon a social worker came out and called her name, and suddenly her whole attitude CHANGED...the pain (that was now) on her face radiated, and her hand grabbed the small of her back as she limped her way to the woman's booth. Hey...wait a minute... I thought to myself, and then spent the next 15 minutes listening to their exchange as she complained to the social worker about having to move because she was evicted, take her EX to court to get child support, and the fact that her cell phone died which is why she couldn't call about that job offer--I think I started to black out a little right about then. All I know is that when I came to she was walking out, as brisk and bubbly as ever with a sly grin on her face. And her back pain and limp were suddenly gone...it was a MIRACLE!! I took that grin to mean that she had gotten whatever assistance she came for, whether it was food stamps or Medicaid...who knows? It made me ANGRY, not because she was given assistance but because she lied about her physical issues to get it...but I had to let it go. This is where they help people, right? And that woman got assisted, even though she was so obviously faking when it came to her physical health...but who knew what her life was like outside the waiting room doors? If she got help, I was in the clear...right? RIGHT??? Finally, it was my turn. I got to sit down with a very nice social worker, who went through all of my paperwork and told me the good news...that I qualified for $16 a month. No, don't adjust your monitors--you read that right. 16 dollars! WHOO-HOO!!! Par-TAY!
In the end I didn't take it...it wasn't worth it to me to deny someone else that small amount of money who may have needed it more, and didn't have a family to help them in times of need. This feeling was confirmed as we were leaving that office, and an elderly couple came in supporting each other and stepping in line to begin their long wait. It depressed me, knowing that they might face the same problems I had that day, and in the end be sent away with little or no assistance. So does it matter to me who caused what, and who's to blame when I think about the lousy state of health care and other forms of assistance? No...what matters is the fact that we live in a society that seems to reward the people who have the most excuses and put on the biggest act. And when you speak the truth and feel no need to put on any acts, it often seems as if you are ignored, and made to feel guilty for asking for help in the first place. I was always taught to work hard and do my best, no matter what I was capable of doing. And though my physical abilities have changed dramatically over the years, I'm still trying. It frustrates me to see others out there who are capable of SO much more, who are not even making the attempt! But what matters the most? The elderly couple. We will all be there someday, struggling to get our medications covered on limited incomes, our bodies failing almost as fast as the cost of our meds increase. We are in a crisis now! These people are not being helped currently...things NEED to change for the better! So please...stop the finger pointing and the arguing. It's time to come in off the playground, and get back to basics. EVERYONE deserves health care, and no one should be denied their medication from lack of ability to pay. If that's the case? Then the medication COSTS too much. People with disabilities deserve health care that will cover the different equipment they need in order to function...they are improving their quality of life and becoming functioning members of society in the process. And I guarantee you...most of the disabled people out there who require things like braces and wheelchairs are NOT trying to get them because they're fashionable.
The political arguments? They need to stop as well. Whether or not you agree with Obama's health care plan no longer matters...what we've had in the past hasn't worked for us, so let's make those changes now and stop yelling about who's at fault for the mere result of delaying change. I personally don't agree with the House of Representative's vote to repeal the Obama health care law. If that were to happen then people with pre-existing conditions would be denied necessary health care. Instead I am putting my hope and faith in the President's plan...why wouldn't I? I have a pre-existing condition, as many disabled Americans do. Will his plan solve everything? Probably not...I'm not sure we could ever develop a plan that fixed all our country's health care issues. Should we take the risk? Definitely, because change needs to happen. And what should we do when things like acting and making excuses seem to be rewarded? Well, that's a whole other post...and I may have to take a pill before I tackle that one. Hopefully my medical insurance will cover it, when that time comes!
Saturday, February 26, 2011
Monday, February 21, 2011
Changes Are Coming!
I was going to write about our lovely health care system this week...but something blessedly got in the way! Please excuse the lateness of this week's post, as the task was an important one, and couldn't have come at a better time. I think you have to be in the right state of mind to tackle a topic like health care, and I guess my mind just wasn't ready...thank goodness for the distraction!
I've mentioned in past posts that one of the reasons I started this blog was to raise awareness about CMT. It wasn't like I've been concentrating on this task since the day I was given my diagnosis...quite frankly I needed time to decompress, search for more information on CMT and what I had in store for me, and learn to adapt to my world now that I finally had a NAME. It's funny how things change with something as simple as a name...I still had questions, still struggled to find answers and still had to deal with the physical changes life had thrown at me. But now that I had this label for these physical changes, they didn't seem so astronomical. Don't get me wrong...I've had many moments in life (before and after my diagnosis) when the frustration just got to be too much. I've cried, screamed a few times--asked that ever present question "WHY??!!!" and even threw my braces across the room. Those moments come and go, and I'm sure I'll experience many more in the future...though as always, I'll make sure there aren't any cats in the way before the braces go flying! Along with the occasional frustrations I've managed to learn a few things...I'm not alone in this fight, there are other people out there still going through the struggle of finding that diagnosis, and as often as I ask "Why!" is about as often as I am left with no definitive answer. And I guess that's okay! Even though part of me wishes the clouds would part, and the rays of sunshine would fall upon me as the booming voice of God provides me with all the answers, the rest of me knows I am meant to find my own way and my own path. I decided that one of my purposes in life would be to raise awareness for CMT, and to help others out there with this disability!
So luckily I received an e-mail from my friend and CMT support group leader, M, passing along some further Charcot Marie Tooth Association information. As I mentioned before, September 19th-25th of last year was designated 'CMT Awareness Week' across the country, in an effort to raise money for research while raising awareness about the disease. This year the CMTA is building upon that goal, and is designating the entire month of September as 'CMT Awareness Month'...imagine the amount of people that could be reached throughout America! There could be hundreds, even thousands of people out there wondering what their physical issues are all about, seeing doctor after doctor and never getting an answer. It sounds crazy that something like that could ever happen, and if I hadn't gone through it myself I would think the same thing! And even though it's only February (as this lovely weather continues to remind me...) I thought I would share this wonderful CMTA goal with you now, and my small part in making it happen. The e-mail M shared with our group asked us to participate in a letter writing campaign to Governor Andrew Cuomo, requesting that he sign a proclamation to have September designated as Awareness Month...the more names behind this, the more the word will get out there. The instructions were simple; you could print out a prewritten letter to Gov. Cuomo and sign your name, or you could write your own personal letter...and in case you haven't noticed, I love to write, so I decided to create my own! I'd love any feedback you have on it, so for this week's post I'm sharing this letter with you. It's coming soon, so get ready for Awareness Month...I know I am! See you in September!
I've mentioned in past posts that one of the reasons I started this blog was to raise awareness about CMT. It wasn't like I've been concentrating on this task since the day I was given my diagnosis...quite frankly I needed time to decompress, search for more information on CMT and what I had in store for me, and learn to adapt to my world now that I finally had a NAME. It's funny how things change with something as simple as a name...I still had questions, still struggled to find answers and still had to deal with the physical changes life had thrown at me. But now that I had this label for these physical changes, they didn't seem so astronomical. Don't get me wrong...I've had many moments in life (before and after my diagnosis) when the frustration just got to be too much. I've cried, screamed a few times--asked that ever present question "WHY??!!!" and even threw my braces across the room. Those moments come and go, and I'm sure I'll experience many more in the future...though as always, I'll make sure there aren't any cats in the way before the braces go flying! Along with the occasional frustrations I've managed to learn a few things...I'm not alone in this fight, there are other people out there still going through the struggle of finding that diagnosis, and as often as I ask "Why!" is about as often as I am left with no definitive answer. And I guess that's okay! Even though part of me wishes the clouds would part, and the rays of sunshine would fall upon me as the booming voice of God provides me with all the answers, the rest of me knows I am meant to find my own way and my own path. I decided that one of my purposes in life would be to raise awareness for CMT, and to help others out there with this disability!
So luckily I received an e-mail from my friend and CMT support group leader, M, passing along some further Charcot Marie Tooth Association information. As I mentioned before, September 19th-25th of last year was designated 'CMT Awareness Week' across the country, in an effort to raise money for research while raising awareness about the disease. This year the CMTA is building upon that goal, and is designating the entire month of September as 'CMT Awareness Month'...imagine the amount of people that could be reached throughout America! There could be hundreds, even thousands of people out there wondering what their physical issues are all about, seeing doctor after doctor and never getting an answer. It sounds crazy that something like that could ever happen, and if I hadn't gone through it myself I would think the same thing! And even though it's only February (as this lovely weather continues to remind me...) I thought I would share this wonderful CMTA goal with you now, and my small part in making it happen. The e-mail M shared with our group asked us to participate in a letter writing campaign to Governor Andrew Cuomo, requesting that he sign a proclamation to have September designated as Awareness Month...the more names behind this, the more the word will get out there. The instructions were simple; you could print out a prewritten letter to Gov. Cuomo and sign your name, or you could write your own personal letter...and in case you haven't noticed, I love to write, so I decided to create my own! I'd love any feedback you have on it, so for this week's post I'm sharing this letter with you. It's coming soon, so get ready for Awareness Month...I know I am! See you in September!
The Honorable Andrew M. Cuomo
Governor of New York State
NYS State Capitol Building
Albany, NY 12224
Dear Governor Cuomo:
I am writing to make a request of great importance. This is a cause that is very close to my heart, and one that will affect many people across the country. It involves a disease called Charcot Marie Tooth syndrome which may seem unfamiliar, though estimated to affect 150,000 Americans. CMT is a degenerative neurological muscular disorder that damages the peripheral nervous system. Since there is no cure or treatment for CMT, the Charcot Marie Tooth Association (CMTA) began the STAR program, a research program striving to find a cure. In September, 2010, the CMTA designated a week as CMT Awareness Week (19th-25th) to raise money for this research, and awareness of the disease across the country. The CMTA’s goal for 2011 is to have the entire month of September designated as ‘CMT Awareness Month.’
One of the reasons this request is so personal to me is a very simple one; I am one of those Americans with CMT. Though the importance of this research goes well beyond finding a cure for the disease I have lived with since my early teens. To be honest, I never would have considered a cure as being a possibility. The fact that the results of the CMTA’s research are so promising (they are expecting to find a medication that stops the progression of this disease within 3-5 years,) is nothing short of a miracle. But my dreams stretch well beyond cures, due to one crucial fact; despite its commonality, most people and many practitioners are unaware that CMT even exists. Because of this, many people with CMT go undiagnosed or are misdiagnosed, and are left with unanswered questions and face a life that may be severely limited without the therapy and knowledge needed to combat this disease. I am also one of those Americans, and my CMT went undiagnosed for 12 years. Within those 12 years, I have dealt with many of the common traits of CMT: deterioration of the peripheral nerves, muscle atrophy/weakness in arms and hands, legs and feet, numbness, high arches and drop foot, hammer toes, loss of reflexes, and balance problems. Other traits are bone abnormalities and curvature of the spine. The most difficult side effects of CMT are ones I am too familiar with; a life of questions and confusion, a constant struggle to adapt as the physical body changes, and discrimination from others. Since getting a diagnosis my life has changed for the better, as I have gained the knowledge needed to deal with the changes, and leg braces and physical therapy have helped me to regain a lot of my balance and improve coordination. Most of all I have answers to my questions, and have been fortunate to meet others with CMT, and start a blog in order to raise awareness of this disease.
The Charcot Marie Tooth Association and I are asking for your help, Governor Cuomo. We are on the verge of amazing changes as we fight against this disease, and awareness grows larger every day. I believe that God puts us here on earth for a reason…and though I may not know all that is in store for me, one thing is very clear; as a person with CMT, I need to do my part in raising awareness in others. The general public must be made aware of the signs and symptoms of CMT so those who may have it can seek medical help before deformities and nerve damage occur and understanding and acceptance in others can flourish. Please help us in our fight to raise awareness and find a cure for CMT, by signing a proclamation to recognize September, 2011 as CMT Awareness Month. Help the CMTA reach those many Americans who struggle to adapt and face a life full of questions, so they may finally find some answers.
Sincerely,
Christine A. Hook
Sunday, February 13, 2011
Bravery and Courage in Small Packages...
Ha--HA!!!! Victory is MINE! Why am I so excited, you ask?? Well, today I embarked on an arduous journey...one I have travelled many times. And though I have never before reached the end of the journey, this time, I emerged victorious...today I finally managed to beat my father in TRIVIAL PURSUIT!!! I'm sure he is reading this right now, none too thrilled that I have shared this with you...but I just couldn't help myself! You don't know what a tremendous amount of brain power it takes to accomplish this...I have been trying to beat him in this game for YEARS! I almost always put up a very good fight...almost! And just when I think I am reaching my goal, one of two things happen. Either my father snatches the last wedge out from under me and wins the game, or I get stuck on a history question about a man from 1852 named Rhutzhana Vowolsklovitch, who changed his name to Yurih Ploponiketh (you know, to make things easier,) before becoming famous for inventing paper bags. Then my father snatches the last wedge...and wins, once AGAIN.
Does this mean I am smarter than my father? Hardly...it all comes down to timing. All the clocks were in synch...all the lights turned green...and I got a fairly easy history question just when I needed it most (and it didn't involve anyone named Yurih!). I also believe that in order to accomplish anything in life you need a little courage, and the willingness to take a chance. Believe me...if I weren't willing to be humiliated all these years for my LACK of knowledge, I never would have learned how great it is to win! And qualities such as courage not only come in handy when trying to beat my father in trivia (a man who knows endless facts about everything...really, he drives me CRAZY), these qualities also help with daily life. I'll give you another example about courage (or lack of it), if I may...I suffer from terrible stage fright, though I come from a very musical family and a lot of my childhood included singing in concerts on stage. Speaking in front of large groups is hard enough, and I tend to talk with my hands...so the more people are looking at me, the more it makes my hands flap--until I look like I'm swatting at flies. Singing a solo in front of people is even worse...it makes me want to pass out! I was a member of my father's Festival choir for years, and have sung in several local performance halls...such as Albany's Cathedral, The Egg, and the Troy City Music Hall. You see? I'm okay in GROUPS. I can hide in a group...it's not all that hard. I'm short, and I know how to scrunch down behind the person in front of me. But anytime I've attempted a solo, things start to go black around the edges, and I have an incredible urge to vomit. And yet, I still dream that one day I will shed this fear and find the courage needed to stand up strong and proud and belt out a tune! I have to tell you that I am quite envious of certain family members, most of all my brother--who is one of the most talented, funniest and bravest people I know to date. P has his own singing group called One Man Short, and once or twice a year they perform a concert, often to raise money for a charity. They are simply AMAZING...there's really no other word that better explains their talent. And when I watch my brother get up on stage and sing with his group...or even perform a solo of his own, I see his bravery and hear his voice, and I am very proud! I would love to have the courage to be able to sing a duet with him someday...for it would be an honor. For now, though, I'll have to be content with sitting in the front row of every one of his concerts, clapping as loud as I can!
As I have been trying to help raise awareness for Charcot Marie Tooth syndrome, I had to find a way to speak out. That was the main reason I started this blog. Even though CMT is a very common disability, it is still not widely known, often to the very people who suffer from it. And it hasn't always been easy to 'hide' from the world, because I have this disability that often gets me noticed. Maybe that's not such a bad thing? It certainly has forced me to leave the comfort of my shell every so often, if only to answer people's questions...and I found the courage to go to my first CMT support group meeting last year, and talk to others like me. Don't get me wrong...that is something I really wanted to do--though sometimes the things we want the most are also the scariest. And being a rather shy person who has trouble in front of groups, this blog allows me to raise awareness without having to shout it from the roof tops...I can write about my symptoms and frustrations, my successes and victories, all within the comfort of my own home. No hand flapping here! And I've been fortunate to meet so many wonderful people...some with CMT, and some who support a loved one with this disorder. I even recently discovered a CMTer who lives and blogs in Canada...she's funny and honest about her disability, and a definite read! If you want to check out her blog, go to http://natteringnic.blogspot.com/. I'm sure you'll enjoy it!
Another site to check out is the updated Charcot Marie Tooth Association website at http://cmtausa.org/, which seems to be more user-friendly...and you can post your own stories about living with CMT, and read about the experiences of others. I have yet to post anything on there, but plan on doing so in the near future! And in the meantime, I'll keep awareness growing from my end...with the keys on my computer. Every so often I'll make sure to break open my shell, go out into the world, and raise some more awareness the old fashioned way--by word of mouth. I may not be speaking in front of an audience, or singing any solos yet, but who knows? I won Trivial Pursuit today...so anything can happen!
Does this mean I am smarter than my father? Hardly...it all comes down to timing. All the clocks were in synch...all the lights turned green...and I got a fairly easy history question just when I needed it most (and it didn't involve anyone named Yurih!). I also believe that in order to accomplish anything in life you need a little courage, and the willingness to take a chance. Believe me...if I weren't willing to be humiliated all these years for my LACK of knowledge, I never would have learned how great it is to win! And qualities such as courage not only come in handy when trying to beat my father in trivia (a man who knows endless facts about everything...really, he drives me CRAZY), these qualities also help with daily life. I'll give you another example about courage (or lack of it), if I may...I suffer from terrible stage fright, though I come from a very musical family and a lot of my childhood included singing in concerts on stage. Speaking in front of large groups is hard enough, and I tend to talk with my hands...so the more people are looking at me, the more it makes my hands flap--until I look like I'm swatting at flies. Singing a solo in front of people is even worse...it makes me want to pass out! I was a member of my father's Festival choir for years, and have sung in several local performance halls...such as Albany's Cathedral, The Egg, and the Troy City Music Hall. You see? I'm okay in GROUPS. I can hide in a group...it's not all that hard. I'm short, and I know how to scrunch down behind the person in front of me. But anytime I've attempted a solo, things start to go black around the edges, and I have an incredible urge to vomit. And yet, I still dream that one day I will shed this fear and find the courage needed to stand up strong and proud and belt out a tune! I have to tell you that I am quite envious of certain family members, most of all my brother--who is one of the most talented, funniest and bravest people I know to date. P has his own singing group called One Man Short, and once or twice a year they perform a concert, often to raise money for a charity. They are simply AMAZING...there's really no other word that better explains their talent. And when I watch my brother get up on stage and sing with his group...or even perform a solo of his own, I see his bravery and hear his voice, and I am very proud! I would love to have the courage to be able to sing a duet with him someday...for it would be an honor. For now, though, I'll have to be content with sitting in the front row of every one of his concerts, clapping as loud as I can!
As I have been trying to help raise awareness for Charcot Marie Tooth syndrome, I had to find a way to speak out. That was the main reason I started this blog. Even though CMT is a very common disability, it is still not widely known, often to the very people who suffer from it. And it hasn't always been easy to 'hide' from the world, because I have this disability that often gets me noticed. Maybe that's not such a bad thing? It certainly has forced me to leave the comfort of my shell every so often, if only to answer people's questions...and I found the courage to go to my first CMT support group meeting last year, and talk to others like me. Don't get me wrong...that is something I really wanted to do--though sometimes the things we want the most are also the scariest. And being a rather shy person who has trouble in front of groups, this blog allows me to raise awareness without having to shout it from the roof tops...I can write about my symptoms and frustrations, my successes and victories, all within the comfort of my own home. No hand flapping here! And I've been fortunate to meet so many wonderful people...some with CMT, and some who support a loved one with this disorder. I even recently discovered a CMTer who lives and blogs in Canada...she's funny and honest about her disability, and a definite read! If you want to check out her blog, go to http://natteringnic.blogspot.com/. I'm sure you'll enjoy it!
Another site to check out is the updated Charcot Marie Tooth Association website at http://cmtausa.org/, which seems to be more user-friendly...and you can post your own stories about living with CMT, and read about the experiences of others. I have yet to post anything on there, but plan on doing so in the near future! And in the meantime, I'll keep awareness growing from my end...with the keys on my computer. Every so often I'll make sure to break open my shell, go out into the world, and raise some more awareness the old fashioned way--by word of mouth. I may not be speaking in front of an audience, or singing any solos yet, but who knows? I won Trivial Pursuit today...so anything can happen!
Sunday, February 6, 2011
What Would You Do?
Hi, my name is Christine, and I'm a TV-holic. "HI CHRISTINE!!" (Thank you...oh, please--no applause!) Yes, I admit it freely--I know television is my vice. Which I suppose isn't all that bad...I really don't suffer from the typical vices. I don't smoke, have no interest whatsoever in doing drugs (I already have balance issues without adding to them!) and I actually have a very serious allergy to alcohol. Which can be disappointing, since I AM Irish, and would like to throw back a Guinness now and then with the best of them! And since none of those particular issues plague me, it's my habit to turn the TV on whenever I am home, and keep it on for most of the day. Sometimes I even accomplish other tasks such as reading a book, and typing a post for this blog, while watching a show...in fact, right now as I type I am watching a documentary on a family that disappeared about seven months ago in the mountains of Oklahoma. And every so often I will take breaks from typing (to rest my hands,) and read the current book lying next to me on the couch, which is a mystery from the 1800s written by Anne Perry. I know...I'm slightly off the beam. Why not just turn the television off?? Don't get me wrong--I do turn it off from time to time, and just read...or type...or whatever is currently keeping me busy. Though I like the noise...and I like to multitask, since I find that focusing on just one thing is often boring!
But the other night was different...in the fact that I wasn't multitasking. I did have the TV on, however, and I was glued to it! I watched a program entitled Primetime: What Would You Do? which airs on Fridays at 9:00pm, on ABC. If you haven't seen that show before, I highly recommend it...and if you would like to check out previous episodes, you can do so at http://abc.go.com/. WWYD touches upon difficult topics such as discrimination, creates scenarios about these topics using actors, and tapes the general public's reactions from behind the scenes. Kind of like Candid Camera, though with serious issues instead of comedy. You'd be amazed what people say and do (or what they DON'T do,) when faced with these topics, and the question always arises...what would you do in this situation? As usual, this episode displayed four separate scenarios, though two in particular dealt with different forms of discrimination.
Now, this is a topic I have talked about in the past. I have certainly dealt with my share of discrimination and ignorance, being a person with a disability. It can be upsetting and embarrassing to know that someone is only seeing the braces and what I CAN'T do...and I feel even worse when I realize they see me as useless or (surprisingly enough,) contagious! And discrimination against a disabled person is only one type...unfortunately, it comes in many forms. WWYD's first scenario involving this topic was filmed in Arizona, about the controversial Arizona ID check law. This allows random checks of people's 'papers' to prove that they are US citizens...and these checks can happen anywhere, though must be conducted by the police during a "lawful stop." There is a lot of controversy as to when a check is 'lawful,' and when it is going to far. Many people in Arizona are for this law, and feel it will cut down on the amount of illegal aliens who have come across the border into their state...and many are strongly against it, and see it as racial profiling. And so this scenario showed a security guard (actor) who stopped an Hispanic man in the middle of a packed restaurant (he was also an actor.) The security guard (who didn't even work for the restaurant,)asked for the man's papers and identification and told him he looked like he 'might not belong there.' Filming behind the scenes, WWYD captured men and women who spoke out against this injustice, yelling at the guard asking if he had HIS identification...they reminded the guard that he was NOT a policeman, and told him what he was doing was discrimination. The response was amazing, and it was uplifting to see people stand up for what they thought was right, and rally against an injustice...so many people spoke up, I lost count! Here was that positive energy I had been looking for!
And then came the second scenario on discrimination. I must say, I was not as uplifted...in fact, at the end of it I was really ANGRY! This scene, filmed in New Jersey, involved two deaf girls (actors) who entered a coffee shop to fill out applications. The manager (actor) had posted a help wanted sign for a kitchen job. One girl in particular was able to read lips, and spoke quite fluently and could easily be understood by anyone who couldn't sign. Certainly she was more than capable of completing any kitchen duties, and the job did not require any customer service. Though the manager's response to her verbal request for an application was met with much less enthusiasm, and blatant rudeness! After asking why they were signing to each other and being informed of their deafness, the man didn't even want to give them applications, stating that they weren't right for the job. Now, these girls hadn't filled out any paperwork or interviewed for anything...though this little putz was more than ready to write them off just because they were deaf. "What if I need you to do something? I can't just call out and tell you what you need to do..." he stated. The one girl assured him that she could read lips...in other words, all he would have to do is walk the 5 feet to the kitchen door to make his request, allowing her to read his lips and complete the task. Not rocket science, right? The girls insisted they wanted to fill out applications, and finally the manager relented..."Go ahead and fill them out, but I'll be honest with you...I'm not gonna hire you," he said, and had the AUDACITY to write 'Deaf' at the top of the job form.
If that wasn't enough to upset me, the response of the different customers sure pushed me over the edge! Only one man, at the end of the clip, spoke out and told the manager what he was doing was wrong. A female customer who was obviously just as disgusted by the manager's reactions, said nothing as she grabbed her order and walked out. Several people stated that they worked in Human Resources, and every single one of them told the manager that he shouldn't have said the things he said--not because it was wrong, but because he might get sued. "Just let them fill it out, then don't call them..." was the general consensus. One woman from HR suggested as much, and finished with the words of wisdom that basically proved one thing--a mere kitchen job was WAY above her mental capacities! "You have to at least take their application, or you could be sued...Handicapped people have the most rights in the world," she advised. Wait...WHAT? We DO?? When did that happen...and why wasn't I given the memo??! It's funny...but through all those years of teaching that I spent asking for more help in my classroom, because I physically needed it (only to be denied,) I never felt as if I had many rights at all. After finally winning my SSD, only to find out it meant the government would be allowed to put a cap on any income I made for the rest of my life, I felt as if I had even less.
The truth of the matter is, despite having the Americans with Disabilities Act (ADA) which was put into place to provide equal opportunity and reasonable accommodation to people with disabilities (as long as the accommodations do not require an undue burden,) many businesses and employers still fall short of complying. I'm proof of that! I had the knowledge and training to run my classroom...all I needed was an extra pair of hands. Those extra hands were never given to me, though the number of students kept increasing. Was that accommodation unreasonable? I don't believe so. Though sadly, many others with disabilities don't even go as far as I managed to go...they never even get their foot in the door. Today, unemployment still remains above 70% for the disabled. And quite frankly, the ADA was only established about 20 years ago--in the 80s. Whatever rights we have, we haven't had for very long! Isn't it time that changed? WWYD showed me once again that discrimination still rears its ugly head, in all its ugly forms...thank goodness I didn't pick that night to turn the TV off! I'm glad I watched, even though it made me angry. It showed me the ignorance that is still out there, and what else needs to be done to bring about education and change...only we can accomplish that, and stamp discrimination out once and for all. Only we can guarantee that change begins, and not just for one group...but for everyone!
But the other night was different...in the fact that I wasn't multitasking. I did have the TV on, however, and I was glued to it! I watched a program entitled Primetime: What Would You Do? which airs on Fridays at 9:00pm, on ABC. If you haven't seen that show before, I highly recommend it...and if you would like to check out previous episodes, you can do so at http://abc.go.com/. WWYD touches upon difficult topics such as discrimination, creates scenarios about these topics using actors, and tapes the general public's reactions from behind the scenes. Kind of like Candid Camera, though with serious issues instead of comedy. You'd be amazed what people say and do (or what they DON'T do,) when faced with these topics, and the question always arises...what would you do in this situation? As usual, this episode displayed four separate scenarios, though two in particular dealt with different forms of discrimination.
Now, this is a topic I have talked about in the past. I have certainly dealt with my share of discrimination and ignorance, being a person with a disability. It can be upsetting and embarrassing to know that someone is only seeing the braces and what I CAN'T do...and I feel even worse when I realize they see me as useless or (surprisingly enough,) contagious! And discrimination against a disabled person is only one type...unfortunately, it comes in many forms. WWYD's first scenario involving this topic was filmed in Arizona, about the controversial Arizona ID check law. This allows random checks of people's 'papers' to prove that they are US citizens...and these checks can happen anywhere, though must be conducted by the police during a "lawful stop." There is a lot of controversy as to when a check is 'lawful,' and when it is going to far. Many people in Arizona are for this law, and feel it will cut down on the amount of illegal aliens who have come across the border into their state...and many are strongly against it, and see it as racial profiling. And so this scenario showed a security guard (actor) who stopped an Hispanic man in the middle of a packed restaurant (he was also an actor.) The security guard (who didn't even work for the restaurant,)asked for the man's papers and identification and told him he looked like he 'might not belong there.' Filming behind the scenes, WWYD captured men and women who spoke out against this injustice, yelling at the guard asking if he had HIS identification...they reminded the guard that he was NOT a policeman, and told him what he was doing was discrimination. The response was amazing, and it was uplifting to see people stand up for what they thought was right, and rally against an injustice...so many people spoke up, I lost count! Here was that positive energy I had been looking for!
And then came the second scenario on discrimination. I must say, I was not as uplifted...in fact, at the end of it I was really ANGRY! This scene, filmed in New Jersey, involved two deaf girls (actors) who entered a coffee shop to fill out applications. The manager (actor) had posted a help wanted sign for a kitchen job. One girl in particular was able to read lips, and spoke quite fluently and could easily be understood by anyone who couldn't sign. Certainly she was more than capable of completing any kitchen duties, and the job did not require any customer service. Though the manager's response to her verbal request for an application was met with much less enthusiasm, and blatant rudeness! After asking why they were signing to each other and being informed of their deafness, the man didn't even want to give them applications, stating that they weren't right for the job. Now, these girls hadn't filled out any paperwork or interviewed for anything...though this little putz was more than ready to write them off just because they were deaf. "What if I need you to do something? I can't just call out and tell you what you need to do..." he stated. The one girl assured him that she could read lips...in other words, all he would have to do is walk the 5 feet to the kitchen door to make his request, allowing her to read his lips and complete the task. Not rocket science, right? The girls insisted they wanted to fill out applications, and finally the manager relented..."Go ahead and fill them out, but I'll be honest with you...I'm not gonna hire you," he said, and had the AUDACITY to write 'Deaf' at the top of the job form.
If that wasn't enough to upset me, the response of the different customers sure pushed me over the edge! Only one man, at the end of the clip, spoke out and told the manager what he was doing was wrong. A female customer who was obviously just as disgusted by the manager's reactions, said nothing as she grabbed her order and walked out. Several people stated that they worked in Human Resources, and every single one of them told the manager that he shouldn't have said the things he said--not because it was wrong, but because he might get sued. "Just let them fill it out, then don't call them..." was the general consensus. One woman from HR suggested as much, and finished with the words of wisdom that basically proved one thing--a mere kitchen job was WAY above her mental capacities! "You have to at least take their application, or you could be sued...Handicapped people have the most rights in the world," she advised. Wait...WHAT? We DO?? When did that happen...and why wasn't I given the memo??! It's funny...but through all those years of teaching that I spent asking for more help in my classroom, because I physically needed it (only to be denied,) I never felt as if I had many rights at all. After finally winning my SSD, only to find out it meant the government would be allowed to put a cap on any income I made for the rest of my life, I felt as if I had even less.
The truth of the matter is, despite having the Americans with Disabilities Act (ADA) which was put into place to provide equal opportunity and reasonable accommodation to people with disabilities (as long as the accommodations do not require an undue burden,) many businesses and employers still fall short of complying. I'm proof of that! I had the knowledge and training to run my classroom...all I needed was an extra pair of hands. Those extra hands were never given to me, though the number of students kept increasing. Was that accommodation unreasonable? I don't believe so. Though sadly, many others with disabilities don't even go as far as I managed to go...they never even get their foot in the door. Today, unemployment still remains above 70% for the disabled. And quite frankly, the ADA was only established about 20 years ago--in the 80s. Whatever rights we have, we haven't had for very long! Isn't it time that changed? WWYD showed me once again that discrimination still rears its ugly head, in all its ugly forms...thank goodness I didn't pick that night to turn the TV off! I'm glad I watched, even though it made me angry. It showed me the ignorance that is still out there, and what else needs to be done to bring about education and change...only we can accomplish that, and stamp discrimination out once and for all. Only we can guarantee that change begins, and not just for one group...but for everyone!
Subscribe to:
Posts (Atom)