Check CNN and Read what John Feehery has said about Health Care - The entire article available at CNN - Health Let me know what you think about his thoughts. I can answer now but won't, hopefully I will hear from some of you. Nancy Duci Denofio
By John Feehery
Special to CNN
Editor's note: John Feehery worked as a staffer for former House Speaker Dennis Hastert and other Republicans in Congress. He is president of Feehery Group, a Washington-based advocacy firm that has represented clients including News Corp., Ford Motor Co. and the United States Chamber of Commerce. He formerly was a government relations executive vice president for the Motion Picture Association of America.
John Feehery says history shows big health care reforms proposed by presidents usually fail.
(CNN) -- President Obama has taken the advice of famous Chicago architect Daniel Burnham. "Make no little plans," Burnham said, "they have no magic to stir men's blood."
The president has called for the complete restructuring of education in this country. He wants to recast the energy industry. He promises to tackle the looming problem of Social Security and Medicare. He wants to raise taxes on the rich and give money to the poor. He plans on redoing the banking and investment industries.
He has even weighed in on the college football bowl system.
But when it comes to another of his ambitions, health care reform, history shows that it is the littler plans that usually get done.
YOUR COMMENTS ARE WELCOME! Either here or at NancyDenofio@facebook.com
People who suffer from Long Term Care, dream of something to make each day better. I am hoping with research, and availability to those who need medication and treatment will be addressed, soon.
Wednesday, September 29, 2010
Tuesday, September 28, 2010
PART THREE Health Insurance Increases
Nancy Duci Denofio listens to Sharon Cousins
My daughter-in-law, who is very ill, had to drop some of her meds this year when their crappy insurance through my son's job (for which they pay a fortune considering his income) went from a co-pay on meds to a percentage. Sucks doesn't begin to cover the state of health care in this country, not that the quality is very good for those who can afford it, since all the docs seem to care about is making money for the drug companies.
Nancy Duci Denofio - You hit on a topic of quality of care which is a concern of many I speak with. Although they pay these extravagant costs to be covered, even if covered through work, or small businesses - the doctors are (unfortunately) being pulled by the... insurance agencies, told not to get out so many tests, not to investigate when this is their job, they went to school to be a doctor with patience and patient. The care is getting less and less, and who else but those directing the answers behind a desk without a degree is determining if you are sick or not. I hope for the best for your daughter in law, and hope she finds a way to get the medication she needs. Check online for groups who are working with different organizations, to help those in need. If I hear of anything I will let you know. Sincerely, Nancy
My daughter-in-law, who is very ill, had to drop some of her meds this year when their crappy insurance through my son's job (for which they pay a fortune considering his income) went from a co-pay on meds to a percentage. Sucks doesn't begin to cover the state of health care in this country, not that the quality is very good for those who can afford it, since all the docs seem to care about is making money for the drug companies.
Nancy Duci Denofio - You hit on a topic of quality of care which is a concern of many I speak with. Although they pay these extravagant costs to be covered, even if covered through work, or small businesses - the doctors are (unfortunately) being pulled by the... insurance agencies, told not to get out so many tests, not to investigate when this is their job, they went to school to be a doctor with patience and patient. The care is getting less and less, and who else but those directing the answers behind a desk without a degree is determining if you are sick or not. I hope for the best for your daughter in law, and hope she finds a way to get the medication she needs. Check online for groups who are working with different organizations, to help those in need. If I hear of anything I will let you know. Sincerely, Nancy
HEALTH CARE INCREASED Part TWO
Carole Kenyon wrote to Nancy Denofio -
Where do I stand? THEY are TTTOOOOO HIIIIGH!!! For something that should be a basic human right,,, access to medical care...unless of course you subscribe to the survival of the richest...theory of natural selection. Then I think you are probably good with the costs...
43 minutes ago ·
Nancy Denofio - TO - Carole - I AGREE they are TOO HIGH and they continue to increase. Each visit to the drug store, I have noticed the drugs "co-pay" continues to increase higher - month to month. How in the world does the cost to manufactuer the same drug d...ay to day cost the consumer with a co-pay 20 - 30 dollars more? Who is splitting the increase? So you have a co pay, you are taking medication and saving money, no doubt because of coverage - but take the person on many medications, a set income and all of a sudden even a co pay can't be reached? When in our country did we ever see a co pay increase month to month on the same medication used for years. The people are the ones' hurting. Either without coverage, too high coverage, or too sick to even go to any doctor - without insurance. The elderly are still turned away from doctors because they won't except medicare - and no matter what you hear - medicare is changing. Medicaid for those without assets, or job, etc., has less to use for those with long term care, the cost of 24 hour care for those with long term care needs reminds me of the old movie "Born on the 4th of July." When you sit there and no one pays attention. Sincerely, Nancy
Where do I stand? THEY are TTTOOOOO HIIIIGH!!! For something that should be a basic human right,,, access to medical care...unless of course you subscribe to the survival of the richest...theory of natural selection. Then I think you are probably good with the costs...
43 minutes ago ·
Nancy Denofio - TO - Carole - I AGREE they are TOO HIGH and they continue to increase. Each visit to the drug store, I have noticed the drugs "co-pay" continues to increase higher - month to month. How in the world does the cost to manufactuer the same drug d...ay to day cost the consumer with a co-pay 20 - 30 dollars more? Who is splitting the increase? So you have a co pay, you are taking medication and saving money, no doubt because of coverage - but take the person on many medications, a set income and all of a sudden even a co pay can't be reached? When in our country did we ever see a co pay increase month to month on the same medication used for years. The people are the ones' hurting. Either without coverage, too high coverage, or too sick to even go to any doctor - without insurance. The elderly are still turned away from doctors because they won't except medicare - and no matter what you hear - medicare is changing. Medicaid for those without assets, or job, etc., has less to use for those with long term care, the cost of 24 hour care for those with long term care needs reminds me of the old movie "Born on the 4th of July." When you sit there and no one pays attention. Sincerely, Nancy
HEALTH CARE INCREASED
Nancy Denofio asked - Where do you stand on health care costs. I have to admit everyone I have spoken to have complained their costs have gone up - 30 to 40 % higher in one year. The report below shows those I spoke with, are not alone.
Read the article from Reuters concerning Health costs of employers at 5-year high www.reuters.com
WASHINGTON (Reuters) - Employers can expect to pay nearly 9 percent more for health care costs for their workers in 2011, the highest level in five years, according to a forecast released on Monday. And
2 hours ago · Comment
Candace Jean Sturtevant Well, since I am unemployed and have no insurance, mine have skyrocketed. I cannot even afford the correct ones I have been on for 11 years. Alternatives suck. I pay about $250.00 a month cash for my healthcare and most of my Rx's are not what I took on insurance they are the $4.00 Rx's Walmart offers, Thank God!
2 hours ago · LikeUnlikeTamara Sockol Dourney Ours have gotten so expensive that it might be cheaper to quit my job and get welfare...
2 hours ago · LikeUnlikeSharon Cousins Our insurance company (though my husband's job) increased the cost of our deductible by more than 200% in one fell swoop, just ahead of health care 'reform'. It was already so expensive I try to space things out so I only go once every oth...er year. I am so disappointed that we didn't get anything resembling true reform for our health care system. Forcing people to buy insurance they can't afford and then can't afford to use once they have it is not very helpful, nor is forcing employers to provide insurance that the recipients can't afford to take advantage of once they have it.
See More
I told Candace - You are lucky to be hooked up with Walmart and that you have coverage for medications. I know there was a time I had no coverage for drugs, hospital and more. The cost for my husband to cover me at the time was over $700.00 per ...month on a single payer plan. This did not mean drugs were covered. This was a long time ago, imagine anyone living with a pre existing condition these days. I understand what you are saying. People, anyone on a fixed income and paying out of pocket has it rough. Anyone living alone and paying the cost not covered by employer is having it rough, and those without are getting sick - and sicker. As your advocate I thank you and I am saving your words. Hopefully the government can come up with a plan that will serve us the right way, and help those with drastic, lealth care needs, and worked all their life, and now are not covered. Stay in touch. Always Nancy
9 minutes ago ·
Denofio told Tamara - How right it is. The cost alone to stay healthy is outragous. It doesn't take a sick person to drive up the cost, it takes a well person work to stay healthy, and money. You wonder, I know many people who have long term care nee...ds who are a welfare and medicaid, and they too have cuts in care. They Do not want to be there, they don't want to need from others but have no choice. To many times they are looked down upon, and they are told they are using the government. So what do we do, bury them? I am upset over the cost to you and to others. We all must fight this battle, and the loopholes need closing. Sincerely Tamara, and please stay in touch too! Always Nancy
Nancy Denofio told Sharon - The big business of todays health care is insurance, and those with the most people - they would rather sock it to us then to take a cut in their life style. I am up front and personal on these topics as you well know. For twe...nty years I have been helping people and trying to find a new way to fight this battle. I had my fingers crossed and now they are no longer crossed, because the big businesses of insurance have opened up those loop holes, and then again, the government is taking from the seniors and those with limited incomes and cutting services. The doctors are cutting back on testing, and the testing is delayed because of insurance. And it goes on and on. The insurance company doesn't want to lose, and they care not one bit about the people. They don't want you if you are sick, and want you to pay through the roof if you are well. I am furious as you can see. And I want people to understand, health is wealth. Without life - what else do we have. And, another article mentions deaths among the boomers, well guess what, they are the ones with the old incomes, the ones that aren't going to get raises and pay the cost, they don't have six figure incomes. They are not going to land the big jobs to pay. No wonder in the obit col. you find more and more boomers dying. Think about it. Always Nancy
To see the full statements and follow please follow on facebook NancyDenofio@facebook.com Or post your own questions.
Read the article from Reuters concerning Health costs of employers at 5-year high www.reuters.com
WASHINGTON (Reuters) - Employers can expect to pay nearly 9 percent more for health care costs for their workers in 2011, the highest level in five years, according to a forecast released on Monday. And
2 hours ago · Comment
Candace Jean Sturtevant Well, since I am unemployed and have no insurance, mine have skyrocketed. I cannot even afford the correct ones I have been on for 11 years. Alternatives suck. I pay about $250.00 a month cash for my healthcare and most of my Rx's are not what I took on insurance they are the $4.00 Rx's Walmart offers, Thank God!
2 hours ago · LikeUnlikeTamara Sockol Dourney Ours have gotten so expensive that it might be cheaper to quit my job and get welfare...
2 hours ago · LikeUnlikeSharon Cousins Our insurance company (though my husband's job) increased the cost of our deductible by more than 200% in one fell swoop, just ahead of health care 'reform'. It was already so expensive I try to space things out so I only go once every oth...er year. I am so disappointed that we didn't get anything resembling true reform for our health care system. Forcing people to buy insurance they can't afford and then can't afford to use once they have it is not very helpful, nor is forcing employers to provide insurance that the recipients can't afford to take advantage of once they have it.
See More
I told Candace - You are lucky to be hooked up with Walmart and that you have coverage for medications. I know there was a time I had no coverage for drugs, hospital and more. The cost for my husband to cover me at the time was over $700.00 per ...month on a single payer plan. This did not mean drugs were covered. This was a long time ago, imagine anyone living with a pre existing condition these days. I understand what you are saying. People, anyone on a fixed income and paying out of pocket has it rough. Anyone living alone and paying the cost not covered by employer is having it rough, and those without are getting sick - and sicker. As your advocate I thank you and I am saving your words. Hopefully the government can come up with a plan that will serve us the right way, and help those with drastic, lealth care needs, and worked all their life, and now are not covered. Stay in touch. Always Nancy
9 minutes ago ·
Denofio told Tamara - How right it is. The cost alone to stay healthy is outragous. It doesn't take a sick person to drive up the cost, it takes a well person work to stay healthy, and money. You wonder, I know many people who have long term care nee...ds who are a welfare and medicaid, and they too have cuts in care. They Do not want to be there, they don't want to need from others but have no choice. To many times they are looked down upon, and they are told they are using the government. So what do we do, bury them? I am upset over the cost to you and to others. We all must fight this battle, and the loopholes need closing. Sincerely Tamara, and please stay in touch too! Always Nancy
Nancy Denofio told Sharon - The big business of todays health care is insurance, and those with the most people - they would rather sock it to us then to take a cut in their life style. I am up front and personal on these topics as you well know. For twe...nty years I have been helping people and trying to find a new way to fight this battle. I had my fingers crossed and now they are no longer crossed, because the big businesses of insurance have opened up those loop holes, and then again, the government is taking from the seniors and those with limited incomes and cutting services. The doctors are cutting back on testing, and the testing is delayed because of insurance. And it goes on and on. The insurance company doesn't want to lose, and they care not one bit about the people. They don't want you if you are sick, and want you to pay through the roof if you are well. I am furious as you can see. And I want people to understand, health is wealth. Without life - what else do we have. And, another article mentions deaths among the boomers, well guess what, they are the ones with the old incomes, the ones that aren't going to get raises and pay the cost, they don't have six figure incomes. They are not going to land the big jobs to pay. No wonder in the obit col. you find more and more boomers dying. Think about it. Always Nancy
To see the full statements and follow please follow on facebook NancyDenofio@facebook.com Or post your own questions.
Saturday, September 25, 2010
HEALTH CARE and COVERAGE
It has been twenty years of working on Health Care Reform and as an advocate for the people on many issues, long term care, medicare, uninsured children, medication, research and more. I have worked with women's issues, families without insurance because of job loss, etc. As a writer, I believe it is the right of the people to speak out.
I have fought for individuals and talked from Boston ...to the White House on Health Care. This all began in the 90's, my fight for individual rights, health to be the care to all children and what good is it if parents are sick, and can't care for their children?
I can tell you so many stories about medication, cost, the sick without help because they can't buy drugs, so I have seen people die because of it. I have seen the increases in health care TODAY with SMALL BUSINESSES up to 30% - Does your income rise this fast? When you go to purchase a drug even with insurance, the prices change from month to month. I have never seen such drastic measures taken by big business against the people.
I have talked for over one and a half hours alone, during the 90's with Presidential Candidate Robert Dole. I have talked alone with Lamar Alexander, Arlen Specter and others on health care.
It certainly shows where the GOP is coming from when they place Lamar as the head of Health Care Reform. Lamar and I had many conversations about health care in the 90's and in my opinion he will never change, nor will he budge from his own belief system. When I interviewed Arlen Specter, he wasn't hit with the disaster in his own life, cancer. I do believe he opened his eyes, and noticed the stuggles out there with individuals. Also, Dole.
I was told I would never get an interview with these Presidential Candidates, because who was I? Well, I was a determined fighter for the people, I was one who never gave up a battle when I thought a battle was to be fought. And so, through all this I learned over the years - the people must talk, they must have a voice - and without a voice we can't expect change. Look what just happened with children and health care. Our President said that he was going to as of Sept. 24th have every child under 18 covered. And coverage for older children would take them through those college years, etc. And what happens, the system finds a loophole and up pops the cure for big business. And there is nothing bigger then the drug companies. They say they will not cover individual children - and on national TV a young girl with long term care needs, isn't going to have coverage. Something is drastically wrong. When the largest carriers will drop children. We need fixing, for sure.
Sincerely, Nancy Duci Denofio
I have fought for individuals and talked from Boston ...to the White House on Health Care. This all began in the 90's, my fight for individual rights, health to be the care to all children and what good is it if parents are sick, and can't care for their children?
I can tell you so many stories about medication, cost, the sick without help because they can't buy drugs, so I have seen people die because of it. I have seen the increases in health care TODAY with SMALL BUSINESSES up to 30% - Does your income rise this fast? When you go to purchase a drug even with insurance, the prices change from month to month. I have never seen such drastic measures taken by big business against the people.
I have talked for over one and a half hours alone, during the 90's with Presidential Candidate Robert Dole. I have talked alone with Lamar Alexander, Arlen Specter and others on health care.
It certainly shows where the GOP is coming from when they place Lamar as the head of Health Care Reform. Lamar and I had many conversations about health care in the 90's and in my opinion he will never change, nor will he budge from his own belief system. When I interviewed Arlen Specter, he wasn't hit with the disaster in his own life, cancer. I do believe he opened his eyes, and noticed the stuggles out there with individuals. Also, Dole.
I was told I would never get an interview with these Presidential Candidates, because who was I? Well, I was a determined fighter for the people, I was one who never gave up a battle when I thought a battle was to be fought. And so, through all this I learned over the years - the people must talk, they must have a voice - and without a voice we can't expect change. Look what just happened with children and health care. Our President said that he was going to as of Sept. 24th have every child under 18 covered. And coverage for older children would take them through those college years, etc. And what happens, the system finds a loophole and up pops the cure for big business. And there is nothing bigger then the drug companies. They say they will not cover individual children - and on national TV a young girl with long term care needs, isn't going to have coverage. Something is drastically wrong. When the largest carriers will drop children. We need fixing, for sure.
Sincerely, Nancy Duci Denofio
Friday, September 17, 2010
Smoking in NYC
SMOKING IN THE CITY
Can't smoke no where in N.Y.C.
Can't smoke between buildings
where the homeless live
or in a park behind a tree -
or at the beach where litter
fills sand
Can't smoke no where in N.Y.C.
between acts on Broadway
before the main course
at Tavern on the Green
oh - they closed that long
ago - you could smoke
there then
Can't smoke no where in N.Y.C.
without a fine of fifty dollars
half the price of a carton -
Bloomberg said he knows this
rule is going to pass
Must be no one who runs the
city smokes -
Nancy Duci Denofio
all rights reserved
Can't smoke no where in N.Y.C.
Can't smoke between buildings
where the homeless live
or in a park behind a tree -
or at the beach where litter
fills sand
Can't smoke no where in N.Y.C.
between acts on Broadway
before the main course
at Tavern on the Green
oh - they closed that long
ago - you could smoke
there then
Can't smoke no where in N.Y.C.
without a fine of fifty dollars
half the price of a carton -
Bloomberg said he knows this
rule is going to pass
Must be no one who runs the
city smokes -
Nancy Duci Denofio
all rights reserved
Thursday, May 13, 2010
The Disability Gap
When Debbie wants to breathe, she does it with a respirator that is dragged along with her wheelchair. When she wants to speak, she has someone remove a bit of air from the tube, then you can hear her. When its time to eat, they attach her feeding tube. This is how Debbie spends the day. She never thought of herself as someone who would inspire you, yet I think she has more courage then those of us with all our faculties. Her eyes are bright, they open wide when someone new comes to visit, or someone suggests a trip away from the room she lives in. She has never looked for sympathy.
"What’s happened to me is planned, I was suppose to have these difficulties,” Debbie said, “It’s not bad, I am teaching others to accept me for who I am.”
You wonder where her courage comes from. But if you look around, she isn’t alone. At the hospital many women and men are using wheelchairs, some are blind, others deaf, some are without limbs, without any hope, or even friends. Some of the people around her, are suffering from any one of the Neurological diseases which could be placed in any of our laps. Although we still hear Debbie’s voice when things are hooked up right, some women can’t talk, or they blurt out words which make no sense, because of their disease. Men and Women from all over this world of ours are suffering with disabilities.
To the able-bodied observer, one finds it hard to see someone spend a lifetime in a wheelchair, or without hands or arms; a pencil in their mouth to write or use a computer. Healthy individuals tend to nervously change the direction of their gaze, as if to wipe away a moment of pain.
So many watched the pain and suffering of Christopher Reeve, but how many really got involved with research? How many people were willing to speak out for men like he was now that he has passed on, he once had a dream. Medical Research is a must for those suffering today, and the future of tomorrow.
We are real, Debbie is real like you, with hopes and dreams and promises. Debbie may feel a true reason behind her own disability, and the courage to go on regardless of changes in her life, but her disability does matter. The outside has ignored change. Debbie herself made a giant step in her attitude. Four years ago, before her disease, she was dancing at a wedding, she was driving, singing, hugging her nieces and nephews and the disabled went unnoticed. She never remembered her own sister in law in a wheelchair.
I say the disability rights movement is slow, unchanging and the attitude of people who never tasted change, sit back and dream, not them.
How often have we heard about those living with a disability getting mainstreamed? Now, we here only job cuts, less employment, no money to change the physical demure of a building to suit just one person. How often do you here someone say, we can’t invite her, or him, because our building or home won’t accommodate the chair, the respirator, another body, such as a caretaker, someone we don’t know. Attitude is pulling down progress for such people, like Debbie. How many times have Debbie’s friends searched for a suitable place for her to live among people her own age.
Being disabled is a challenge. My goal is to challenge the people who don’t understand the why and the where, the when and the how. When something hits home, the pressure is on, the mold you made from life becomes weaker, and cracks. What was once perfect has changed, what was beautiful has now turned ugly.
Who are the activists and advocates for the disabled? Are they only the ones who have lived, touched, grew close to a situation, or are they the ones who do not turn their heads when someone different smiles, or passes in their path.
I use to ride in a wheelchair, and I have gone from chair to cane, and now I walk; I recall a lady in downtown Saratoga Springs NY, during a block concert, shooing her children away from me, because I rode in a chair. My legs weren’t carrying me about. I still smiled at the lady, and her children. I couldn’t tell if her children had blue, brown or green eyes. I wasn’t sure about the face, or exact outline of their bodies, but they were there in front of me until a guardian pulled them clear of me. It was my first day out in the chair since rehabilitation. It made a lasting memory.
Strange enough, those of us who have used a wheelchair, or who have other disabilities, do not search for help, from a stranger. Most of the time we strive to be independent, make plans to get here or there, either alone or with a care taker. When such plans fall apart, and a wheelchair can’t get up a curb on its own, or a door is too heavy to open… it seems like people melt away, into corners, perhaps because we have been independent in the past. Help is a simple thing, if someone asked to help you with the door, you would smile, and thank them. Think about the person in a wheelchair, with machines attached to her chair, and the fear in eyes of strangers. It’s hard to get anyone to help.
Although many disabled people have found an Avenue of independence, those around them believe they can’t be living in a Wheelchair. Wrong. Wheelchairs are now designed to fit each and every need and bring independence. Living in a wheelchair is no longer a death sentence for the outside world.
There was a day and age when disabled bodies were invisible. Today, they are part of the main stream, people wheel around office buildings, up main street, into markets and restaurants. They are one of us, with some differences. When a blind person walks down a street, waving her red and white cane in front of her, she knows where she is heading. When someone uses his or her mouth to touch a keyboard to talk, they know what they want to say.
Many dependent people aren’t disabled physically. They have stickers for their car windows, but you can’t see what’s wrong with them. This doesn’t mean they aren’t disabled. The less you see, the more uncomfortable it is for those with disabilities. Although, those with feeding tubes and respirators may scare away the children, of adults who do not educate at home, they too are uncomfortable but you are aware of their misgivings.
I guess the most important thing is education. If you are able bodied, and stare at someone with a problem, never attempt to teach your children about the differences in life, and the progress made in the past to understand and accept people for who they are, not what they are, then its high time, as my Irish Mother would have said.
It’s another journey, a process, a reality. With all these reality TV shows, one should step in the shoes of those who have changed from one life to another. Adjusting to circumstance. Don’t end someone’s journey because they are different from you.
Although those with disabilities are learning, and have learned to accept and move forward, they still dream of the future, of the day when someone will come up with a cure for their disease. Some have stopped waiting, and do get discouraged, not everyone is a mountain of strength, which makes research even more important. Some people have courage enough to breathe with a machine, or get dressed in the morning. Some people call courage, survival. I call courage a lifetime ambition.
Nancy Duci Denofio
Healthcare Advocate
When Debbie wants to breathe, she does it with a respirator that is dragged along with her wheelchair. When she wants to speak, she has someone remove a bit of air from the tube, then you can hear her. When its time to eat, they attach her feeding tube. This is how Debbie spends the day. She never thought of herself as someone who would inspire you, yet I think she has more courage then those of us with all our faculties. Her eyes are bright, they open wide when someone new comes to visit, or someone suggests a trip away from the room she lives in. She has never looked for sympathy.
"What’s happened to me is planned, I was suppose to have these difficulties,” Debbie said, “It’s not bad, I am teaching others to accept me for who I am.”
You wonder where her courage comes from. But if you look around, she isn’t alone. At the hospital many women and men are using wheelchairs, some are blind, others deaf, some are without limbs, without any hope, or even friends. Some of the people around her, are suffering from any one of the Neurological diseases which could be placed in any of our laps. Although we still hear Debbie’s voice when things are hooked up right, some women can’t talk, or they blurt out words which make no sense, because of their disease. Men and Women from all over this world of ours are suffering with disabilities.
To the able-bodied observer, one finds it hard to see someone spend a lifetime in a wheelchair, or without hands or arms; a pencil in their mouth to write or use a computer. Healthy individuals tend to nervously change the direction of their gaze, as if to wipe away a moment of pain.
So many watched the pain and suffering of Christopher Reeve, but how many really got involved with research? How many people were willing to speak out for men like he was now that he has passed on, he once had a dream. Medical Research is a must for those suffering today, and the future of tomorrow.
We are real, Debbie is real like you, with hopes and dreams and promises. Debbie may feel a true reason behind her own disability, and the courage to go on regardless of changes in her life, but her disability does matter. The outside has ignored change. Debbie herself made a giant step in her attitude. Four years ago, before her disease, she was dancing at a wedding, she was driving, singing, hugging her nieces and nephews and the disabled went unnoticed. She never remembered her own sister in law in a wheelchair.
I say the disability rights movement is slow, unchanging and the attitude of people who never tasted change, sit back and dream, not them.
How often have we heard about those living with a disability getting mainstreamed? Now, we here only job cuts, less employment, no money to change the physical demure of a building to suit just one person. How often do you here someone say, we can’t invite her, or him, because our building or home won’t accommodate the chair, the respirator, another body, such as a caretaker, someone we don’t know. Attitude is pulling down progress for such people, like Debbie. How many times have Debbie’s friends searched for a suitable place for her to live among people her own age.
Being disabled is a challenge. My goal is to challenge the people who don’t understand the why and the where, the when and the how. When something hits home, the pressure is on, the mold you made from life becomes weaker, and cracks. What was once perfect has changed, what was beautiful has now turned ugly.
Who are the activists and advocates for the disabled? Are they only the ones who have lived, touched, grew close to a situation, or are they the ones who do not turn their heads when someone different smiles, or passes in their path.
I use to ride in a wheelchair, and I have gone from chair to cane, and now I walk; I recall a lady in downtown Saratoga Springs NY, during a block concert, shooing her children away from me, because I rode in a chair. My legs weren’t carrying me about. I still smiled at the lady, and her children. I couldn’t tell if her children had blue, brown or green eyes. I wasn’t sure about the face, or exact outline of their bodies, but they were there in front of me until a guardian pulled them clear of me. It was my first day out in the chair since rehabilitation. It made a lasting memory.
Strange enough, those of us who have used a wheelchair, or who have other disabilities, do not search for help, from a stranger. Most of the time we strive to be independent, make plans to get here or there, either alone or with a care taker. When such plans fall apart, and a wheelchair can’t get up a curb on its own, or a door is too heavy to open… it seems like people melt away, into corners, perhaps because we have been independent in the past. Help is a simple thing, if someone asked to help you with the door, you would smile, and thank them. Think about the person in a wheelchair, with machines attached to her chair, and the fear in eyes of strangers. It’s hard to get anyone to help.
Although many disabled people have found an Avenue of independence, those around them believe they can’t be living in a Wheelchair. Wrong. Wheelchairs are now designed to fit each and every need and bring independence. Living in a wheelchair is no longer a death sentence for the outside world.
There was a day and age when disabled bodies were invisible. Today, they are part of the main stream, people wheel around office buildings, up main street, into markets and restaurants. They are one of us, with some differences. When a blind person walks down a street, waving her red and white cane in front of her, she knows where she is heading. When someone uses his or her mouth to touch a keyboard to talk, they know what they want to say.
Many dependent people aren’t disabled physically. They have stickers for their car windows, but you can’t see what’s wrong with them. This doesn’t mean they aren’t disabled. The less you see, the more uncomfortable it is for those with disabilities. Although, those with feeding tubes and respirators may scare away the children, of adults who do not educate at home, they too are uncomfortable but you are aware of their misgivings.
I guess the most important thing is education. If you are able bodied, and stare at someone with a problem, never attempt to teach your children about the differences in life, and the progress made in the past to understand and accept people for who they are, not what they are, then its high time, as my Irish Mother would have said.
It’s another journey, a process, a reality. With all these reality TV shows, one should step in the shoes of those who have changed from one life to another. Adjusting to circumstance. Don’t end someone’s journey because they are different from you.
Although those with disabilities are learning, and have learned to accept and move forward, they still dream of the future, of the day when someone will come up with a cure for their disease. Some have stopped waiting, and do get discouraged, not everyone is a mountain of strength, which makes research even more important. Some people have courage enough to breathe with a machine, or get dressed in the morning. Some people call courage, survival. I call courage a lifetime ambition.
Nancy Duci Denofio
Healthcare Advocate
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