British newspapers are publishing photographs of Barry Baker's house, the man I wrote about yesterday. The photographs graphically illustrate Mr. Baker's house was a mess. Apparently this was the first thing that struck the two men when they entered Mr. Baker's home. The most polite newspapers describe Mr. Baker's home as "messy" or "untidy" while more judgmental headlines use words such as "squalor". I cannot dispute the fact Mr. Baker's house was indeed a shamble. The photographs published are upsetting, no human should live in a home that is littered with boxes and the debris of a lifetime. However, my next thought was are these photographs relevant? What, if any, was the point of releasing these photos? Why did the company hired to clean Mr. Baker's home after he died post the photos on their website?
The answer to the above questions is clear to me: the worth of Mr. Baker's life is being called into question. The photographs are being used to help justify or at least excuse the decision made by the EMS workers not to resuscitate Mr. Baker. For instance, one British news outlet, Argus, begins its story today with the headline "Squalor found by Paramedics". The first sentence of the Argus story begins: "This is the scene allegedly faced by two paramedics called to save the life of Barry Baker the man medics are accused of leaving to to die in his home". A photograph of Mr. Baker's home accompanies the story. The unwritten message being sent is obvious: no one should live in such a neglected home. To live in such a home calls into question not just the worth of the individual but his mental and physical ability. This person is not worthy. There is no need save this life or even make an effort to do so. The implication of this unstated thought process is deeply troubling and deflects attention from the only important and relevant question: Why was Mr. Baker's life so devalued? The answer is as sad as it is troubling: Mr. Baker's death is a social tragedy, a sign that some members of society are deemed expendable. Among the most obvious expendable humans are the elderly and disabled.
As a society we are capable of many wonderful things. For instance, Mr. Baker had apparently undergone hip replacement surgery. This a common medical procedure and over the last two decades has enhanced and extended the life of many people, especially the elderly. This is but one of many modern medical procedures that when you really think about it dazzle the mind. We can replace human joints, perform heart by pass surgery, remove tumors, and cure a host of diseases that were once inevitably fatal. Yet I question the value of these complex and expensive medical procedures in a health care system that pays scant attention to long term care. In both Britain and the Unites States long term health care is grossly underfunded and far too many people are condemned to institutional care. How can we as a society justify saving the life of a person that experiences a traumatic injury or in Mr. Baker's case a hip replacement surgery only to let that same individual die of neglect? This question is not easily solved nor is even being addressed. All human life has value, a belief that is not held by all and more specifically by two people that could have saved Mr. Baker's life. What a tragic way to start the New Year.
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.
Friday, January 2, 2009
Thursday, January 1, 2009
Grim News to Start 2009
I have not posted an entry to my blog as I have gotten caught up in the usual end of semester, holiday, and end of year obligations. When I add in a day after Christmas car break down that remains unresolved and costly this blog has not been a priority. As I always do, I spent New Year's Eve with a very good bottle of port thinking and dreaming about the New Year. My thoughts were decidedly gloomy last night and this morning. I see no reason to think the economy will improve, unemployment decline, or the financial market to rise from historic lows. I am very worried about money and how I will make ends meet this year. I am worried about my son as I fear he will not get into college because his grades are far from stellar. Assuming he goes to college I wonder how will I pay for his education. In short, my worries have worries.
All of the above pales in comparison to the larger decline in humanism that I have observed in 2007 and 2008. If you want to read about Holiday cheer stop reading because my worst fears about the value of life have been realized in Britain. It has been a strange 48 hours as the news is encouraging and troubling at the same time. On December 30 the British Prime Minister, Gordon Brown, made it clear that he would block any legislation that sought to make assisted suicide easier. In a radio program Brown stated he was opposed to any legislation that could pressure the disabled, elderly, and sick into ending their life. Brown maintained "we have to make it absolutely clear that the importance of life is recognized". These are nice sentiments but a viewpoint that is not widely held. The vast majority of people in Britain and America support assisted suicide. Some have called the move toward assisted suicide the "culture of death", a term I dislike, but is a concept that truly scares me.
My friends who work in medicine scoff at me when I state I am fearful my life will be deemed expendable in the event I get sick. These same friends tell me my disability would never factor in my health care and that my concern has no basis in fact. I wish this were the case because a frightening case in Britain has hit the news. The day after the Prime Minister stated assisted suicide would never be permitted news has emerged that two ambulance workers, what we call the EMS, have been arrested. The men were allegedly overheard discussing whether they should resuscitate Barry Baker a disabled man who had collapsed in his house. Apparently, they were not impressed with the condition of Baker's home and appalled by his disability. Baker lived alone and thought he was having a heart attack. He called 999 and a dispatcher called for an ambulance. By the time the ambulance arrived Baker had collapsed but the phone line was still connected. Unbeknownst to the two EMS workers every word they said was heard by the 999 control center. The two men independently decided that Baker's life had no value. They believed and stated that Baker's life was not worth saving and any attempt to resuscitate Baker was pointless. Their primary concern was not saving Baker's life but figuring out what to say to the control center. The EMS workers were heard deciding how to say that Baker was dead when when they arrived. The call center employees were shocked, called their supervisors, who in turn called the police. The two EMS workers were arrested by police.
Obviously the EMS workers did not know their conversation was overheard and being recorded. A full investigation is underway. The two men were "detained on the suspicion of willfully neglecting to perform a duty in public office contrary to Common Law" and subsequently arrested. This story sent shiver down my spine. Mr Baker was just 59 years old and had recently had hip replacement surgery. My first thought was quite selfish: I am far more physically disabled than Baker and cannot help but wonder what would happen to me in the event I was in the same situation. Would EMS workers see my wheelchair and think "We will let that poor bastard die, He has suffered enough". I am sure my medical friends will remain doubtful such a thing can or will ever happen in this country. I do not have that luxury--I know my life has less value. Society is quite efficient in letting me know my existence and the existence of all those that cannot walk, see, or hear is unwanted. Statements about the sanctity of human life are fine but the reality as I know it is radically different. Great stigma has always been associated with physical and cognitive disabilities. The ADA was passed twenty years ago but the social structure of American society remains hostile to the presence of people with a disability. How do I know this? Well, it is okay for SNL to humiliate David Paterson, the Governor of New York, via a skit that relied on antiquated beliefs about blindness. The unemployment rate among disabled people remains near 70% and this grim statistic has not changed in decades. And what about those uppity cripples that complain? They are described by Time magazine as "hit and run plaintiffs"--the reference here is to Jarek Molski who has filed hundreds of ADA complaints. Mr. Molski has been effectively silenced and must petition the Central District Court in California and all state courts before filing any new ADA lawsuits.
The death of Mr. Baker and the ongoing isolation and stigma associated with disability is proof positive that disabled people have a long road to traverse before we approach anything resembling equality. Activists such as myself are too often a lone voice in a vast wilderness that is shocking hostile. Everywhere I go I encounter physical and social obstacles that are as blatant as they are illegal. Worse yet, I am just one person who is waging what I see as a losing social and intellectual battle. I am not on the front lines with people like those who are active in ADAPT, the real army of the disability rights movement. So on this first day of 2009 I am about as gloomy about as possible about the future. Yet, I know I am lucky in that I am not held captive in a nursing home like other disabled people. My employment is transient and terminal but relatively constant. My son is healthy as could be and my house is well heated. These may seem like modest things to be grateful for but I know that within miles of my home socially invisible people exist, a vast underclass, that wish they had what most Americans take for granted.
All of the above pales in comparison to the larger decline in humanism that I have observed in 2007 and 2008. If you want to read about Holiday cheer stop reading because my worst fears about the value of life have been realized in Britain. It has been a strange 48 hours as the news is encouraging and troubling at the same time. On December 30 the British Prime Minister, Gordon Brown, made it clear that he would block any legislation that sought to make assisted suicide easier. In a radio program Brown stated he was opposed to any legislation that could pressure the disabled, elderly, and sick into ending their life. Brown maintained "we have to make it absolutely clear that the importance of life is recognized". These are nice sentiments but a viewpoint that is not widely held. The vast majority of people in Britain and America support assisted suicide. Some have called the move toward assisted suicide the "culture of death", a term I dislike, but is a concept that truly scares me.
My friends who work in medicine scoff at me when I state I am fearful my life will be deemed expendable in the event I get sick. These same friends tell me my disability would never factor in my health care and that my concern has no basis in fact. I wish this were the case because a frightening case in Britain has hit the news. The day after the Prime Minister stated assisted suicide would never be permitted news has emerged that two ambulance workers, what we call the EMS, have been arrested. The men were allegedly overheard discussing whether they should resuscitate Barry Baker a disabled man who had collapsed in his house. Apparently, they were not impressed with the condition of Baker's home and appalled by his disability. Baker lived alone and thought he was having a heart attack. He called 999 and a dispatcher called for an ambulance. By the time the ambulance arrived Baker had collapsed but the phone line was still connected. Unbeknownst to the two EMS workers every word they said was heard by the 999 control center. The two men independently decided that Baker's life had no value. They believed and stated that Baker's life was not worth saving and any attempt to resuscitate Baker was pointless. Their primary concern was not saving Baker's life but figuring out what to say to the control center. The EMS workers were heard deciding how to say that Baker was dead when when they arrived. The call center employees were shocked, called their supervisors, who in turn called the police. The two EMS workers were arrested by police.
Obviously the EMS workers did not know their conversation was overheard and being recorded. A full investigation is underway. The two men were "detained on the suspicion of willfully neglecting to perform a duty in public office contrary to Common Law" and subsequently arrested. This story sent shiver down my spine. Mr Baker was just 59 years old and had recently had hip replacement surgery. My first thought was quite selfish: I am far more physically disabled than Baker and cannot help but wonder what would happen to me in the event I was in the same situation. Would EMS workers see my wheelchair and think "We will let that poor bastard die, He has suffered enough". I am sure my medical friends will remain doubtful such a thing can or will ever happen in this country. I do not have that luxury--I know my life has less value. Society is quite efficient in letting me know my existence and the existence of all those that cannot walk, see, or hear is unwanted. Statements about the sanctity of human life are fine but the reality as I know it is radically different. Great stigma has always been associated with physical and cognitive disabilities. The ADA was passed twenty years ago but the social structure of American society remains hostile to the presence of people with a disability. How do I know this? Well, it is okay for SNL to humiliate David Paterson, the Governor of New York, via a skit that relied on antiquated beliefs about blindness. The unemployment rate among disabled people remains near 70% and this grim statistic has not changed in decades. And what about those uppity cripples that complain? They are described by Time magazine as "hit and run plaintiffs"--the reference here is to Jarek Molski who has filed hundreds of ADA complaints. Mr. Molski has been effectively silenced and must petition the Central District Court in California and all state courts before filing any new ADA lawsuits.
The death of Mr. Baker and the ongoing isolation and stigma associated with disability is proof positive that disabled people have a long road to traverse before we approach anything resembling equality. Activists such as myself are too often a lone voice in a vast wilderness that is shocking hostile. Everywhere I go I encounter physical and social obstacles that are as blatant as they are illegal. Worse yet, I am just one person who is waging what I see as a losing social and intellectual battle. I am not on the front lines with people like those who are active in ADAPT, the real army of the disability rights movement. So on this first day of 2009 I am about as gloomy about as possible about the future. Yet, I know I am lucky in that I am not held captive in a nursing home like other disabled people. My employment is transient and terminal but relatively constant. My son is healthy as could be and my house is well heated. These may seem like modest things to be grateful for but I know that within miles of my home socially invisible people exist, a vast underclass, that wish they had what most Americans take for granted.