News outlets are writing about the Washington State Department of Health 2009 Death with Dignity Act Report that was just released. I carefully read the Executive summary and am chilled to the bone. Of one thing I am sure: I will never reside in a state where assisted suicide is legal. I am not being hysterical or alarmist. I simply value my life however crippled I may be or become. Obviously, the residents of Washington, Oregon, and Montana do not feel the same way. And frankly so do many other people that live from coast to coast. I know this because in subtle and overt ways strangers and friends alike have made it clear the life of people with a disability are not as valuable. Don't doubt me. I have read multiple emergency preparedness plans and if a disaster takes place who is going to treated at a hospital and evacuated? No person that is elderly, disabled, or anyone else who is not physically fit.
Who exactly chose to die in Washington? Medication, don't you just love the euphemism here, was dispensed to 63 individuals. Prescriptions were written by 53 different physicians. Prescriptions dispensed by 29 different pharmacists. 47 individuals have died. 36 died after ingesting medication. 7 died without having ingested medication. The 4 remaining who died status is unknown. The age range was between 48 and 95 years. 94% lived west of the Cascades. 79% had cancer. 9% had neuro-degenerative disease including ALS. 12% had respiratory illness or disease. These statistics, charts and graphs and much more can be found in the Executive Summary. Death has been processed and is clearly very efficient. But what the figures above don't indicate is why. Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.
Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.
Losing autonomy, 100%
Less able to engage in activities making life enjoyable, 91%
Loss of dignity, 82%
Losing control of bodily functions, 41%
Burden on family, friends/caregivers, 23%
Inadequate pain control or concerns about it, 25%
Financial implications of treatment, 2%
I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question? Well, in part few have the experience of disability. Few realize just how fleeting our autonomy is and that its loss is hardly a tragedy. Bodily functions are just that and does it really matter how or under what circumstances one urinates and defecates. Why is so hard to accept that all life is valuable? Is the ability to control the flow of our own urine really critical to our existence and humanity? If this was the case I should have been put to death 30 years ago.
All sentient beings need to think long and hard about the assisted suicide. Sure on the surface assisted suicide sounds like a reasonable idea. We should be in control of our own destiny including the way we die. Well that control can be found in hospices that have revolutionized end of life care. What we need to do is keep our attention on the real issue--who is likely to want to die and why. Who may be encouraged to die and why? The answer to these questions is simple--those who want to die believe their life has no value. Hence who is at most risk. My crippled body, the elderly, terminally ill and those born with profound physical and cognitive deficits. We may be very different humans but one thing unites us--our life is thought to lack value. We humans value our autonomy. But how do we perceive that autonomy? Do I lack autonomy? You bet your ass I do. Do I lack dignity? In the estimation of many, yes. This is inherently dangerous thinking and takes place in every day. To me the assisted suicide debate is a smoke screen that obscures our humanity. What best glimpse is their into our humanity than the way we perceive and care for the weakest and most vulnerable among us. Do we care for the elderly, value the end of their lives or put them in nursing home to rot away and die? Do we treat severely disabled children with compassion or kill them because we do consider their life worth living? These are hard questions with historical precedent and contemporary implications. Now that I am old (or at least in the eyes of my son) let me provide some historical precedent. In the olden days people with a high spinal cord injury did not survive. These people did not die of their injury, they died because doctors thought no one who was a quadriplegic could lead a rich and fill life. These people died of complications associated with their injury. This is a euphemism just as much as medication being prescribed for those in the State of Washington that fear the loss of autonomy, dignity, and the lack of control over bodily functions. We people with dysfunctional bodies have something to say about all this. We have a vested interest too. Just like all those that can walk, I too value my life. I just wish others thought the same way. This is a discussion that must be engaged by all people but especially those with a disability.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Saturday, March 6, 2010
Tuesday, March 2, 2010
An Olympian Black Out
The Olympics have just concluded. NBC did its usual corporate type broadcasting. To me, that means there was a plethora of taped, pre-programed events in five and ten minute blocks. Media darlings were created before the games began and many of them lived up to expectations. I also saw way too many commercials as it seemed that half of every broadcast was spent selling something. Yikes, do I sound jaded or what! Perhaps I am just burned out from watching too many obscure sports such as curling. Despite my words of protest, I did enjoy aspects of the Olympics. The visual images were striking and I truly enjoyed watching skiers, the opening and closing ceremonies, and was glued to the television during the Gold Medal men's hockey game.
I believe the Olympic create what some pundits call "media saturation". NBC devoted hundreds if not thousands of broadcast hours on the games via its constellation of television stations. I have no problem with this--we are talking about big business and hundreds of millions of dollars in revenue. However, there is a down side to this sort of saturation. The Paralympic Games will be held in March, from the 12th to the 21st in Vancouver. I am intensely interested in the Paralympics and for the last few days have been searching for a way to watch the games on television. As near as I can determine, there will no live coverage on any television network in American or abroad. None. Not one hour. Not even on NBC owned Universal Sports, home of the obscure sports. According to the International Paralympic Committee (IPC) the games will go multimedia. What does this mean? An official newsletter will be distributed daily entitled "Vancouver 2010 News". The president of the IPC, Sir Philip Craven, will keep a blog during the games to inform readers about what is taking place. The IPC will also have an internet channel, ParalympicSportTV. There will also be FaceBook page and highlights can be watched on You Tube.
The IPC is obviously trying very hard to gain media attention. A multimedia approach is surely the way to go but is a far cry from prime time television, spots on the national news, and extended newspaper coverage. The net result is the Paralympics will be held in a virtual media black out. Sure a few stories will appear in newspapers and I have no doubt a "heart warming" 30 to 90 second piece will be aired on a major network but that is the end of it. This is a shame as the Paralympics differ in no tangible way from the Olympics that had media saturation. Viewers will miss out on upsets, world class competition, and compelling story lines that make the Olympics a global phenomenon. I for one hope that ParalympicSportTV works well as I will be spending my evening trying to watch the games. I will even read the IPC newsletter and blog mentioned above. I do all this with a heavy heart as I know there is much that I and the rest of the country will miss.
I believe the Olympic create what some pundits call "media saturation". NBC devoted hundreds if not thousands of broadcast hours on the games via its constellation of television stations. I have no problem with this--we are talking about big business and hundreds of millions of dollars in revenue. However, there is a down side to this sort of saturation. The Paralympic Games will be held in March, from the 12th to the 21st in Vancouver. I am intensely interested in the Paralympics and for the last few days have been searching for a way to watch the games on television. As near as I can determine, there will no live coverage on any television network in American or abroad. None. Not one hour. Not even on NBC owned Universal Sports, home of the obscure sports. According to the International Paralympic Committee (IPC) the games will go multimedia. What does this mean? An official newsletter will be distributed daily entitled "Vancouver 2010 News". The president of the IPC, Sir Philip Craven, will keep a blog during the games to inform readers about what is taking place. The IPC will also have an internet channel, ParalympicSportTV. There will also be FaceBook page and highlights can be watched on You Tube.
The IPC is obviously trying very hard to gain media attention. A multimedia approach is surely the way to go but is a far cry from prime time television, spots on the national news, and extended newspaper coverage. The net result is the Paralympics will be held in a virtual media black out. Sure a few stories will appear in newspapers and I have no doubt a "heart warming" 30 to 90 second piece will be aired on a major network but that is the end of it. This is a shame as the Paralympics differ in no tangible way from the Olympics that had media saturation. Viewers will miss out on upsets, world class competition, and compelling story lines that make the Olympics a global phenomenon. I for one hope that ParalympicSportTV works well as I will be spending my evening trying to watch the games. I will even read the IPC newsletter and blog mentioned above. I do all this with a heavy heart as I know there is much that I and the rest of the country will miss.