Next month it will be a year since I found the huge grossly infected wound on my hip. I have been humbled by the experience. In many ways my confidence was shattered. I had not been sick much less dependent upon others since I was a child. It was a terrible experience. I did my best but in retrospect I have many regrets and wracked by guilt (I am after all Catholic). I wish I had handled myself differently. However the past is the past and looking back accomplishes little. What I am most concerned with is finding what I have termed a new normal. While I have resumed my ordinary life I have done so with extreme caution. I check my skin at least once a day. I push up and relieve pressure on my skin frequently--at least every ten minutes. When I start teaching again I am sure students will think I have some sort of weird psychological tick. I know I cannot endure another serious wound. Thus when you remove all other variables I am now driven by fear--fear of another wound. This thought permeates everything I do. I hope my fear will go away but am not sure it will nor do I want it to vanish. Fear will keep me healthy.
What boggles my mind and directly causes me to remain fearful is the unknown. I still have no idea how I developed my wound. More than anything else this worries me. Could I be subject to a recurrence? The answer to this question is a simple yes. My skin is not as tough as it once was, especially at the wound site. This is a well established medical fact. To compensate I get off my skin, i.e. lay down, several times a day for hours. I have not done this since I was paralyzed in 1978. I despise stopping my day in this way. I am always aware of how long I have been sitting, planning when I can lay down. If I am up most of the day I am sure to lay down for an extended period the next day. Again, I despise this. I despise the fact my very fancy clinitron bed is still in my living room. I have plans to move it to my bedroom next month. And here is the problem. Skin care is trial and error. Sounds straight forward. No it is not. An error, just love the euphemism, could mean a day, week, month or months in bed. A so called error is a disaster. Hence my extreme caution. Yes, I could sit up from the time I wake until the time I go to bed at night some 15 hours later. But doing that at this stage is simply fool hardy.
Here is what keeps me up at night--will I ever return to norma? That is will I wake up, check my skin, get in my wheelchair and not think about my skin. I did this for 30 plus years. Sure I had nicks and cuts along the way but nothing that sent me to a doctor. I had never had a serious wound. Not one. I am surely not the only aging paralyzed guy living in America. I know I am not the only guy (or gal) who has developed and healed a severe wound. In fact I learned the most common would for a person paralyzed 30 years or more with no history of skin problems is a stage four wound. Go figure.
The above thoughts were prompted by an article I read in the July issue of New Mobility. The article in question "If I Only Knew Then..." was written by man who is my age, was paralyzed over 30 years ago, and had no history of wounds. Like me, he developed a stage four wound. As is typical of New Mobility, the article was positive and hopeful. Nary a bad word is ever printed in New Mobility, the happy paper for paralyzed people. They also found one of the few paralyzed people that was employed (the author was a lawyer), had great health insurance, and the employer was happy to make reasonable accommodations. I do not live in this fantasy land but multiple good points were made. Pressure relief is important. As we age so too does our skin. Hence we need to be more not less cautious as we age with a spinal cord injury. Avoid shear from clothing. Most importantly be willing to modify our life style. It is this last point that is most important. How many of us, myself included, are willing to modify our life style? Not many. I have done so. I do not like it but realize I have no other choice. When worried I try and remind myself where I was a mere three months ago. I was doing very little. I could not have gone to Seattle like I did earlier this month. My strength has returned to normal and my endurance is getting better daily. Six months ago sitting for a few hours was physically exhausting and transfers were an adventure. Today, I transfer as I once did and sitting is not tiring at all. In short, I have made giant strides physically. It is the emotional baggage that I have yet to overcome. But overcome I will. I know despite my fear, very day is better. Every day I get closer to where i was one year ago. Every day I inch closer to what once passed for normal.
Thursday, August 11, 2011
Thursday, August 4, 2011
Jerry Fucking Lewis!
Last night before I went to bed I was browsing the news online when I came across the headline "Jerry Lewis No Longer MDA National Chairman". This news delighted me. I do not mention Lewis much on this blog. Suffice it to say in spite of all the money he raised on behalf of the MDA, I consider him one of the foremost destructive forces in terms of disability rights. Even as child I found the MDA telethon, all telethons, tawdry. The MDA telethon was just the worst of the worst. The cloying use of pity, the pathetic tear jerking song Lewis sang at the end of the telethon always seemed antiquated and wrong. I suspect what bothered me was I knew he was using children with disabilities. The message was clear: life with a disability is a fate worse than death. You people, Lewis implored, meaning those fortunate enough to live life without a disability, should give money to the pathetic creatures on stage. This worked for decades. Pity as a fundraising technique simply works. It still does even though telethons are now largely a thing of the past.
Thanks to people like Mike Ervin and Cris Mathews in Chicago, Laura Hershey in Denver and Harriet McBryde Johnson in Charleston protests against the MDA telethon and Lewis in particular spread. People with disabilities had enough. Offensive comments made by Lewis over the years began to be seen for what they were--deeply hurtful and bigoted. Still, the MDA resisted and now 21 years after the ADA was passed has ever so slowly begun to separate themselves from Lewis. Hopefully 2011 will be the last year of the abridged version of the MDA telethon. Lewis' resignation from the MDA can only be perceived as a good thing. I suspect his departure from the MDA was unpleasant, perhaps forced. I have no inside information in this regard but the carefully worded and terse announcement by the MDA provided no explanation for why Lewis will not appear on the upcoming telethon. According to MDA Chairman of the Board R. Rodney Howell Lewis "will not be appearing on the telethon" and "we will not be replacing him as MDA national chairman".
I am sure I will get more than a few nasty emails in response to the title of this post and critical words about Lewis. For those unhappy with me I suggest reading Harriet McBryde John's wonderfully witty chapter in her book Too Late To Die Young about her protest of the MDA telethon (Honk if You Hate Telethons). I will end with a quote from McBryde Johnson that highlights exactly why the telethon was so destructive:
"My mother thought telethons were tacky. She said no when we were asked to appear. She tried to distance me from them, but my own eyes told me the MDA thon was about people like me... The poster children looked just like us: we were all literally the same flesh... Together in the crip ghetto, my friends and I watched the annual parade of our little dopplegangers being publicly sentenced to death and saw one another through with gallows humor. Later, having moved on to the mainstream world, I wanted to go to law school, qualify for scholarships, get a job and car loan, start a business. But dying children aren't allowed to do such things; they can't be trusted to fulfill their obligations." Yes, the ordinary is beyond the crippled. And this my friends is why the fact Jerry Lewis is no longer associated with the MDA is a positive development.
Thanks to people like Mike Ervin and Cris Mathews in Chicago, Laura Hershey in Denver and Harriet McBryde Johnson in Charleston protests against the MDA telethon and Lewis in particular spread. People with disabilities had enough. Offensive comments made by Lewis over the years began to be seen for what they were--deeply hurtful and bigoted. Still, the MDA resisted and now 21 years after the ADA was passed has ever so slowly begun to separate themselves from Lewis. Hopefully 2011 will be the last year of the abridged version of the MDA telethon. Lewis' resignation from the MDA can only be perceived as a good thing. I suspect his departure from the MDA was unpleasant, perhaps forced. I have no inside information in this regard but the carefully worded and terse announcement by the MDA provided no explanation for why Lewis will not appear on the upcoming telethon. According to MDA Chairman of the Board R. Rodney Howell Lewis "will not be appearing on the telethon" and "we will not be replacing him as MDA national chairman".
I am sure I will get more than a few nasty emails in response to the title of this post and critical words about Lewis. For those unhappy with me I suggest reading Harriet McBryde John's wonderfully witty chapter in her book Too Late To Die Young about her protest of the MDA telethon (Honk if You Hate Telethons). I will end with a quote from McBryde Johnson that highlights exactly why the telethon was so destructive:
"My mother thought telethons were tacky. She said no when we were asked to appear. She tried to distance me from them, but my own eyes told me the MDA thon was about people like me... The poster children looked just like us: we were all literally the same flesh... Together in the crip ghetto, my friends and I watched the annual parade of our little dopplegangers being publicly sentenced to death and saw one another through with gallows humor. Later, having moved on to the mainstream world, I wanted to go to law school, qualify for scholarships, get a job and car loan, start a business. But dying children aren't allowed to do such things; they can't be trusted to fulfill their obligations." Yes, the ordinary is beyond the crippled. And this my friends is why the fact Jerry Lewis is no longer associated with the MDA is a positive development.
Tuesday, August 2, 2011
Houston We have a Problem: Our Social Failure
Sorry for the lack of posts in July. I am afraid August may be just as slow. As already mentioned, I am loving my return to a routine life. Last month I made two trips. First to Vermont where I volunteered at the Vermont 100 (a fund raiser for Vermont Adaptive Ski and Sports). My big trip was out west to Seattle for the Seattle Children's 7th Annual Pediatric Bioethics Conference. I came away from the Seattle conference energized and depressed. Our health care system is hopelessly screwed up--not exactly front page news I know. At the conference there seemed to be united agreement on this as well as an utter lack of agreement on how to fix the health system. But it is heartening to know there are many MDs and PhDs out there that are just as disturbed as I am. Unfortunately, nothing is being done in the here and now to fix the myriad of problems doctors and people with disabilities encounter. United we could spearhead change. On the flight home I dreamed of working with caring compassionate doctors who want to empower and embrace the goals of all people, those with and without disabilities--social equality and equal access to health care. We people with disabilities, I thought, have much experience with the health care system and routinely get inferior care. Surely, working from the inside and outside of the medical community we could foster real change.
The above I have concluded is nothing but a pipe dream. Despite the obvious care and concern exhibited by the many fine physicians I met, they are an economic world apart from many of the people with disabilities they treat. As a group, MDs are well compensated and wealthy. As a group, people with a disability are unemployed in staggering numbers and often have poor health insurance--if any at all. The disparities are startling. This reminded yet again of the true social problems people with a disability have yet to overcome due to decades of socially accepted exclusion. In a mere forty years since our attitudes toward disability began to change and yet the only thing we have accomplished is a series of laws such as the ADA that are routinely ignored. This thought too came to mind as I flew on a commercial jet and was treated as poorly as expected in spite of many laws that supposedly make me equal. And yes airlines treat everyone poorly however I doubt anyone walking is ever forced to wait an hour to get off the plane after the last passenger has left. The point I am trying to stress here is that when it comes to disability we seem to always be the first to suffer. Suffer. An apt word given what is going on with the economy. We appear to have dodged what the media has hysterically called "Financial Armageddon". The scary part to me is that among people with a disability I am well off. That is I have insurance, bad insurance but insurance nonetheless, a supportive family, my own home and work. The people I worry about are those that have no voice such as those in a group home or those dependent upon social security and state support. Simply put, state and federal agencies cannot serve the population they were created to support--the elderly, disabled and poor. This troika is suffering in the truest sense of the word. The budget cuts hurt this population more than any other. Worse yet, no one cares. These people, my people, have no lobbyists. That have no power.
Let's take New York and California as examples. Since 2008 billions of dollars have been slashed from budgets that are set up to assist people with disabilities, elderly and the poor in California. $3 billion has been cut from Medi-Cal that insured about 7.5 million Californians. $4.6 billion was cut from Supplemental Security Income Program that supports 13 million people with little or no income. For people with a disability such as a spinal cord injury, a quadriplegic for instance, these cuts mean the difference between living at home and being in a nursing home. Those that end up in a nursing home rarely escape such institutions. To me, this is suffering--being forced from your home and family to a nursing home. To me, this is the sort of cut that is socially and morally unacceptable.
In New York, the NY Times is continuing its wonderful examination of group homes in the state of New York. In "Reaping Millions in Nonprofit Care for Disabled" the NY Times details how two men have become wealthy running a Medicaid financed non profit organization serving people with developmental disabilities. In addition to salaries that neared one million dollars each man had luxury cars paid for with public money. When their children went to college they passed on the tuition bill to their non profit group. While this was taking place the waiting list for group homes in the state remained long--hopelessly long in some cases. Families as a result suffered. There it is again, that pesky word suffer.
What I want to know is when will it end? How much can we take away from those in the most need? When will those being hurt, the suffering masses, rise up? I wish I had answers to these questions but I do not. I do know the situation is grim. I know it is unacceptable. So the issue is when and where will someone or some group in this country say no. No you cannot cut the budget. Lives are at stake. I am sure it will happen--it is not an if but a when. This is the day I look forward to.
The above I have concluded is nothing but a pipe dream. Despite the obvious care and concern exhibited by the many fine physicians I met, they are an economic world apart from many of the people with disabilities they treat. As a group, MDs are well compensated and wealthy. As a group, people with a disability are unemployed in staggering numbers and often have poor health insurance--if any at all. The disparities are startling. This reminded yet again of the true social problems people with a disability have yet to overcome due to decades of socially accepted exclusion. In a mere forty years since our attitudes toward disability began to change and yet the only thing we have accomplished is a series of laws such as the ADA that are routinely ignored. This thought too came to mind as I flew on a commercial jet and was treated as poorly as expected in spite of many laws that supposedly make me equal. And yes airlines treat everyone poorly however I doubt anyone walking is ever forced to wait an hour to get off the plane after the last passenger has left. The point I am trying to stress here is that when it comes to disability we seem to always be the first to suffer. Suffer. An apt word given what is going on with the economy. We appear to have dodged what the media has hysterically called "Financial Armageddon". The scary part to me is that among people with a disability I am well off. That is I have insurance, bad insurance but insurance nonetheless, a supportive family, my own home and work. The people I worry about are those that have no voice such as those in a group home or those dependent upon social security and state support. Simply put, state and federal agencies cannot serve the population they were created to support--the elderly, disabled and poor. This troika is suffering in the truest sense of the word. The budget cuts hurt this population more than any other. Worse yet, no one cares. These people, my people, have no lobbyists. That have no power.
Let's take New York and California as examples. Since 2008 billions of dollars have been slashed from budgets that are set up to assist people with disabilities, elderly and the poor in California. $3 billion has been cut from Medi-Cal that insured about 7.5 million Californians. $4.6 billion was cut from Supplemental Security Income Program that supports 13 million people with little or no income. For people with a disability such as a spinal cord injury, a quadriplegic for instance, these cuts mean the difference between living at home and being in a nursing home. Those that end up in a nursing home rarely escape such institutions. To me, this is suffering--being forced from your home and family to a nursing home. To me, this is the sort of cut that is socially and morally unacceptable.
In New York, the NY Times is continuing its wonderful examination of group homes in the state of New York. In "Reaping Millions in Nonprofit Care for Disabled" the NY Times details how two men have become wealthy running a Medicaid financed non profit organization serving people with developmental disabilities. In addition to salaries that neared one million dollars each man had luxury cars paid for with public money. When their children went to college they passed on the tuition bill to their non profit group. While this was taking place the waiting list for group homes in the state remained long--hopelessly long in some cases. Families as a result suffered. There it is again, that pesky word suffer.
What I want to know is when will it end? How much can we take away from those in the most need? When will those being hurt, the suffering masses, rise up? I wish I had answers to these questions but I do not. I do know the situation is grim. I know it is unacceptable. So the issue is when and where will someone or some group in this country say no. No you cannot cut the budget. Lives are at stake. I am sure it will happen--it is not an if but a when. This is the day I look forward to.
Wednesday, July 13, 2011
Life is Sweet
Dedicated readers will have noted July has been a slow month for me in terms of posts. Do I have an excuse? Sort of. I am very busy enjoying life. By life, I mean ordinary, or what was once routine. Sure I am still extremely cautious with skin care. -I get off my skin a few times a day for a couple of hours. However, I am back to doing what I once enjoyed. Nothing seems to upset me. I swear it is like I took a happy pill. I enjoy grocery chopping. I enjoy running errands. I love driving my car. I am kayaking and thoroughly enjoying the Hudson River Estuary. Last weekend I saw a massive bald eagle I admired from afar. I gave a lunch talk this week at the Hastings Center about predictive testing for Alzheimer's. The discussion that followed my short talk was stimulating in the extreme. This weekend I am going to Vermont to volunteer for an ultra marathon race called the VT 100. Better yet, I am going to Seattle next week. I am giving a retrospective paper about the past, present and future of health care. I will no doubt spend much of my time eating my way through Pike Place Market. I will catch up with friends who live in the area and meet new people. In short, my life has returned to normal or what passes for normal. I am a happy man. The point I am trying to make is that you will have to pardon the lack of posts for a little while longer. I am just too content with life to sit at my computer. I do plan on putting up a retrospective piece in a few days based on the paper I will deliver in Seattle. I have been working hard on this. So please forgive me and get outside and do something fun. Life is grand and I am enjoying every minute of it.
Wednesday, June 29, 2011
End of Life Discussions
My email led me to read two connected but very different responses to an impossible conundrum. Here I refer to the increasing probability if not certainty that in the near future it will be possible to test people for Alzheimer's Disease before symptoms of dementia have developed. That is people who are clear and lucid will be told that they are going to develop dementia. The progress of Alzheimer's can be slowed with medication but no cure exists. What then is the point of the new test to predict Alzheimer's? According to researchers and clinicians early detection could help patients and their families to prepare for the future. What exactly do these plans entail? To me the obvious reaction is simple--many would choose not to live. This scares me--it truly has me worried. The implications to vulnerable populations, meaning the elderly and disabled, are potentially dangerous.
According to an article in Time, "As Tests to Predict Alzheimer's Emerge, So May Debates Over Right to Die", by Eric Parens and Josephine Johnston, both scholars at the Hastings Center note:
"None of us can know what sort of slippery slope that request [to die] might put our society on; one day we're giving assistance in dying to Alzheimer's sufferers, the next we're doing the same for people who are depressed or disabled or poor or just old. It is vitally important for us to explore all the reasons against allowing or assisting Alzheimer's patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer's, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can't themselves afford to pay for years of nursing home care, don't want their children saddled with that expense, or would rather the money be used for their grandchildren's education".
The discussion Parens and Johnston want to see begin has not taken place in the United States. I agree a discussion must take place--the sooner the better. However, unlike Parens and Johnston I am wary of such a debate. I am convinced how it will end before it has started--out of the goodness of our souls and with great compassion we will end the lives of those with Alzheimer's. Alzheimer's is a devastating disease that strikes fear into the hearts of those it will affect as well as their families. Alzheimer's destroys what we American's value the most-cognition and personal autonomy. Self determination is slowly and inevitably lost to an individual. It is for most the worst case scenario for the end of life. How we will respond to a discussion is a forgone conclusion in my mind. I am not just in a dark mood. For on the same day I read the Time article by Parens and Johnston I also read a blog post by Stephen Drake of Not Dead Yet. Entitled, "Netherlands: One-third of Doctors Willing to Euthanize Patients with Early Dementia", I was not the least bit surprised that one-third of doctors were willing to end the life of those suffering from early dementia associated with Alzheimer's. Yes, one in three doctors would end the life of a person with dementia. 33% of doctors would end the life of a person with dementia. Think about this statistic. What sort of debate are we really about to enter in here in the USA? I would suggest it is not a debate but rather the search for the justification to end the life of people with dementia. The Dutch have already made such a decision described by the press as a "minority" of doctors are willing to help patients die. This statement is correct. However, it still leaves one in three doctors willing to kill their patient. I do not like these odds--indeed, these odds scare me to the very core.
To me, we are about to start asking all the wrong questions. Instead of wondering if we should be allowing people with Alzheimer's to die I would posit we should be asking how can we empower such people. How can we insure families receive appropriate support, how can we insure families do not incur great debt caring for a loved one. What can people who have Alzheimer's teach us about life? I may appear naive in positing these observations. However, I am not naive. I saw my father experience dementia at the end of his life. It broke my heart and was devastating but at no point did I wish he or his doctors would prematurely end his life. In looking back on those hard days I am intensely gratified for what I was able to do for him. He and my mother cared for me when I was a morbidly sick child and in a very small way I was able to reciprocate their efforts.
Life is not easy nor are end of life issues. I am perplexed why we do not have a vibrant hospice movement in the USA. Simply put we do not often get to choose the way we die. When we start making these sorts of decisions for others as Parens and Johnston pointed out we are potentially on our way to a slippery slope. I know a good bit about this concern as I have seen that slippery slope first hand. I am old enough now to comment on the history of medical care and how our social perceptions dictate care. For example, in the late 1970s surviving a high level spinal cord injury was highly unusual. During my rehabilitation I did not see any quadriplegics--certainly no respirator dependent quadriplegics. I never even heard of anyone surviving such an injury. As I have written before people with high level spinal cord injuries were perceived to have no quality of life. Doctors decided to let nature take its course. That is these men and women were allowed to die. The first quadriplegic I met in college had a C-8 level of injury. One night when he told me "one more inch and I would be dead". Back then you see C-8 was an unwritten cut off mark for survival. This leads me to ask what will become the unofficial cut off mark for survival with Alzheimer's? When and under what circumstances do we decide life is not worth living? Again, this scares me, truly frightens me. You see about once a year some stranger will come up to me and without prompting state "I would rather be dead than use a wheelchair'.
Let us be very clear about the so called debate we are going to enter into. The decision has already been made before we even start the discussion. The variables up for debate with regard to Alzheimer's touch upon what we American's value the most--autonomy. Autonomy however is fluid and ever changing. None of us are ever autonomous beings. We are all in some ways dependent upon others. This dependence could be a job or family. But autonomous beings we are not. So let's no kid ourselves. The Dutch have proved in advance that about on third of doctors have no qualms about killing people with Alzheimer's type dementia. I see no reason to think Americans doctors will be any different. If this does not scare you I will be scared for you.
According to an article in Time, "As Tests to Predict Alzheimer's Emerge, So May Debates Over Right to Die", by Eric Parens and Josephine Johnston, both scholars at the Hastings Center note:
"None of us can know what sort of slippery slope that request [to die] might put our society on; one day we're giving assistance in dying to Alzheimer's sufferers, the next we're doing the same for people who are depressed or disabled or poor or just old. It is vitally important for us to explore all the reasons against allowing or assisting Alzheimer's patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer's, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can't themselves afford to pay for years of nursing home care, don't want their children saddled with that expense, or would rather the money be used for their grandchildren's education".
The discussion Parens and Johnston want to see begin has not taken place in the United States. I agree a discussion must take place--the sooner the better. However, unlike Parens and Johnston I am wary of such a debate. I am convinced how it will end before it has started--out of the goodness of our souls and with great compassion we will end the lives of those with Alzheimer's. Alzheimer's is a devastating disease that strikes fear into the hearts of those it will affect as well as their families. Alzheimer's destroys what we American's value the most-cognition and personal autonomy. Self determination is slowly and inevitably lost to an individual. It is for most the worst case scenario for the end of life. How we will respond to a discussion is a forgone conclusion in my mind. I am not just in a dark mood. For on the same day I read the Time article by Parens and Johnston I also read a blog post by Stephen Drake of Not Dead Yet. Entitled, "Netherlands: One-third of Doctors Willing to Euthanize Patients with Early Dementia", I was not the least bit surprised that one-third of doctors were willing to end the life of those suffering from early dementia associated with Alzheimer's. Yes, one in three doctors would end the life of a person with dementia. 33% of doctors would end the life of a person with dementia. Think about this statistic. What sort of debate are we really about to enter in here in the USA? I would suggest it is not a debate but rather the search for the justification to end the life of people with dementia. The Dutch have already made such a decision described by the press as a "minority" of doctors are willing to help patients die. This statement is correct. However, it still leaves one in three doctors willing to kill their patient. I do not like these odds--indeed, these odds scare me to the very core.
To me, we are about to start asking all the wrong questions. Instead of wondering if we should be allowing people with Alzheimer's to die I would posit we should be asking how can we empower such people. How can we insure families receive appropriate support, how can we insure families do not incur great debt caring for a loved one. What can people who have Alzheimer's teach us about life? I may appear naive in positing these observations. However, I am not naive. I saw my father experience dementia at the end of his life. It broke my heart and was devastating but at no point did I wish he or his doctors would prematurely end his life. In looking back on those hard days I am intensely gratified for what I was able to do for him. He and my mother cared for me when I was a morbidly sick child and in a very small way I was able to reciprocate their efforts.
Life is not easy nor are end of life issues. I am perplexed why we do not have a vibrant hospice movement in the USA. Simply put we do not often get to choose the way we die. When we start making these sorts of decisions for others as Parens and Johnston pointed out we are potentially on our way to a slippery slope. I know a good bit about this concern as I have seen that slippery slope first hand. I am old enough now to comment on the history of medical care and how our social perceptions dictate care. For example, in the late 1970s surviving a high level spinal cord injury was highly unusual. During my rehabilitation I did not see any quadriplegics--certainly no respirator dependent quadriplegics. I never even heard of anyone surviving such an injury. As I have written before people with high level spinal cord injuries were perceived to have no quality of life. Doctors decided to let nature take its course. That is these men and women were allowed to die. The first quadriplegic I met in college had a C-8 level of injury. One night when he told me "one more inch and I would be dead". Back then you see C-8 was an unwritten cut off mark for survival. This leads me to ask what will become the unofficial cut off mark for survival with Alzheimer's? When and under what circumstances do we decide life is not worth living? Again, this scares me, truly frightens me. You see about once a year some stranger will come up to me and without prompting state "I would rather be dead than use a wheelchair'.
Let us be very clear about the so called debate we are going to enter into. The decision has already been made before we even start the discussion. The variables up for debate with regard to Alzheimer's touch upon what we American's value the most--autonomy. Autonomy however is fluid and ever changing. None of us are ever autonomous beings. We are all in some ways dependent upon others. This dependence could be a job or family. But autonomous beings we are not. So let's no kid ourselves. The Dutch have proved in advance that about on third of doctors have no qualms about killing people with Alzheimer's type dementia. I see no reason to think Americans doctors will be any different. If this does not scare you I will be scared for you.
Saturday, June 25, 2011
Bitter Truth and Gritty Reality
A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:
"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.
The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?
"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.
The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?
Thursday, June 23, 2011
Grim News on Both Sides of the Atlantic
Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.
The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:
56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.
The ARC survey is equally grim.
Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.
I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.
Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.
The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:
56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.
The ARC survey is equally grim.
Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.
I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.
Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.
Subscribe to:
Posts (Atom)