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.
7 comments:
William, I am sorry you are feeling so gloomy. The news story does reflect a troubling truth about our society that may likely become an even graver problem as the economy declines. But, OTOH, other people heard what happened and acted immediately, and the sociopaths are now arrested. I applaud the dispatchers for their ethics and good sense.
End of semester slump is a terrible thing. It makes everything look worse.
Maybe you and your son can explore his options for the future, including those that do not involve going to college. College is no guarantee of employment at a comfortable wage, and I think young people today have sussed that out and lost their hope. This may be why your son doesn't focus on school. If he has a coherent plan for the future, he is likely to do better.
Yanub, Thanks as always for your interesting response. I agree it is a positive sign that the EMS workers were arrested. I will follow up on this. Yes, end of semester slumps are terrible and my gloomy mood is made worse by the fact I have no classes this spring (my classes were cancelled due to budget cuts).
There is indeed a whole world of possibilities for kids that do not go to college. In fact, college is now so costly I do not consider it worth the great expense or saddling a persos so young with a mountain of debt. The sad fact is the educational system today penalizes non conformists who question what they are taught because standardized tests rule the day. Gifted and advanced classes are considered a "privilege" and only those students that do as they are told are permitted (having pushy parents is a help as well). Thus kids like my son that are very smart have no place and their dreams, thoughts, and ambition is ground down over time. My son rebels at every chance in productive and non productive ways--I guess the apple does not fall far from the tree! Whatever his future is I suspect it will be interesting as he has always followed a unique path. I only wish this would alleviate some parental worry.
Long ago, my best friend and I were working at the same publishing company. She has an unusual disability that freaked out the company HR, despite the fact that she was hired. I moved to another job and a week later, she was fired because the company was worried about how much her medical benefits would cost the company. Little did they know that from her birth, a leading university hospital had been covering all of her medical bills.
What is beginning to concern me now is ageism. Several years ago, I had surgery that left a noticeable scar on my face. I was sent to a plastic surgeon for reconstructive surgery. "If you were, say, in your 70s, we wouldn't suggest it," the surgeon said. Not due to medical difficulties, but because they obviously thought a 70 year old woman didn't need to be concerned about her appearance.
I am 53 but I increasingly overhear remarks about letting people of a certain age receive inadequate or no medical care because of their age.
As for your son, remember your compadres when you were in college. How many of them went on to work in their field of study?
I was an English major and within a year of graduation, I was in programming school.
As for the start of the new year, I have to believe this is going to be good. I have to, because I was part of a mass layoff a month ago. I have to believe 2009 is going to be better. Sinking into despair would be fatal for me.
At least it's sunny today.
Ageism is a huge problem. I saw this when my father was near the end of his life after he had a stroke. Simply put, MDs were afraid to treat my father. I assume they were afraid of a law suit if something went wrong. This is a very bad approach to health care.
As for my son, you are correct that a college degree often has little relevance to one's work and career. My brother for instance got an MA in Shakespearean literature and now sells and markets crackers. I want my son to go to college to expand his mind and broaden his view and knowledge of the world. College is a great though costly place to do this.
Sorry, you were laid off from work. You sure have a ton of company (myself included) as the unemployment rate it seems is rising daily. I agree that one cannot delve into a sense of doom and gloom with regard to work and the future this year holds. I am pessimistic but eternally hopeful. Like you, we can only do our best and one way or another bills always seem to get paid.
Bill,
Have heart. You are a gem and make a great contribution. You stimulate thought with facts I am unaware of each time I read this blog.
I got some money worries, too, but they too shall pass. Tomorrow is always a better day. You are a resourceful guy, and this is a matter of spirit and faith. I know you have a deep faith within, even if the popular institutions of faith can make your skin crawl. Meditate (without the port.) Exercise. Take your dog a different place for a walk (I do this often.)
Looking forward to your book coming out.
Oh, Dad had a stroke in the middle of the night while in Italy on a business trip. Mom was along. Ambulance took him to a nursing home, not the hospital. He got to the university hosp by dawn, but too late for clot busting drugs (stroke was so sever he prob wouldn't have gotten them anyway.)
Also, one of my best friends Bob, in 2005, had something go on and Drs at local hospital (near Annapolis MD) said he just had a UTI. He woke his housekeeper up screaming then blacked out. Then started screaming a few minutes later. He kept this up for hours. But He was never verbal after this "attack" started. He also had a bad fever - but his doc diagnosed a UTI, like all SCI pts can get (Bob had high level, C4,5) BUT I have to conclude this was an inappropriate diagnosis. Bob was dead 2 days later, never having recovered consciousness. I wish the family had wanted an autopsy, but the wife who divorced him and his children opted not to. SO, DIC, some sort of embolism had to cause the CNS symptoms, but seems it was never considered. I have moved from that area of the country. I miss him often. His care was inappropriate.
Thanks for the column.
Oh, you encouraged Tom to get a job if he isn't going to work at school?
SoBoyblogger77, Thanks for the kind words and advice, it is appreciated. Meditation is nor my forte as I find solace in being active, that is performing mindless chores that occupy my mind. I will however take the dog for a walkas I know this is good for both of us. Sorry but the port, no more than two glasses after dinner, is a mainstay of my holiday season. I love good port and buy a single bottle of the good stuff every year.
What has been at the forefront of my mind in recent weeks is the overwhelming social obstacles disabled people encounter. Dealing with a paralyzed body is pretty basic for many such as myself 30+ years post injury. What is hard to accept is that the barriers to independence have become more significant in recent years. Rehab is woefully short for newly paralyzed people and long term care if needed inadequate. This is just unnecessary and I wish there was more I could do to undermine the social isolation and stigma associated with disability. In short, I suspect I am more frustrated than down. I am desperate to help others and wish there was more I could do than write.
William-
Your fears are founded. I spent my entire childhood being treated for mental health issues that were not there. I had medical issues but, due to invisible (at that time) disabilities, I recieved only mental health care and grew up thinking I was insane. As an adult each and every mental health diagnosis has been invalidated by proper medical care.
I still have had to fight to find a doctor who can see past the Disabled parts of me to treat the causes. I finally succeeded but I have been hunting for such a long time. That is not the way it should be.
I will not tell you to cheer up but, you cheered me by making certain I do not feel alone. I am also an advocate, and have had positive media response to my outcries for change. However, the local politicians have made promises they have not kept.
Beyond your fears of mishandled medical care, do you also fear mishandled legal repercussions for saying no to law breakers? It took me over a month to get into an apartment which is very inaccessible due to having a service animal. What won them over was my providing a list of fines they would face if they denied me. I hate having to go that far, and am feeling tired from fighting for basic human rights all day.
Today however, I discovered that I can ask a stranger for help lifting something. Perhaps the strained economy will open some eyes to the strain that disabled persons face when they have to choose between food, shelter, and medicine.
yours,
Kat
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