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Saturday, May 5, 2012

Chen Guangcheng: Bad Ass

Last week my son sent me an article from the Huffington Post about Chen Guangcheng. He was following the news about Chen Guangcheng, the Chinese activist, who he described as a being a "bad ass of epic proportions". Why was Chen Guangcheng a "bad ass of epic proportion"? In my son's estimation he was a real life Rutger Hauer as in the Grade B 1980s movie Blind Fury. I am not a fan of this movie. We watched it together a long time ago. After the film I explained to my son why I had serious reservations about the content. I explained it was based on a faulty premise and followed a well worn super cripple belief used throughout film history. My son listened politely and said "Dad, its just a cool movie, you know the suspension of willing disbelief and all that stuff". 

I was reminded of this exchange because in the last week dozens of stories about Chen Guangcheng have appeared in nearly every news media outlet. As I hoped, Stephen Kuusisto has chimed in at Planet of the Blind and is quoted in a very good article by Alan Greenblatt. Greenblatt notes that central to all stories about Guangcheng is the fact he is blind. He wonders if Chen Guangcheng is in the news because of his activism or because he is blind. This is a damn good question. Kuusisto is quoted as stating "His blindness did not give him any particular bravery or insight. It is just a factor in a much larger life". I completely agree with this statement. Predictably tabloids have had a field day as they are prone to when it comes to any sort of disability.  I perceive no change in the way Chen Guangchang is described--there is always a reference to the fact he is blind. Kuusisto is quoted as noting "Blindness stands as a kind of metaphorical intensifier. The cleric [Omar Abdel Rashman the so called blind sheik] is angrier than other people because he is blind. In that way Chen is more miraculous and heroic because he is blind". This is in part exactly why my son was so enamored with the movie Blind Fury. Rutger Hauer was not an ordinary bad ass. He was an epic bad ass because he was blind. Chen Guangcheng is no ordinary activist, he is as Kuusisto observes a miraculous and heroic activist.

When people I know, and the many I do not know, note my assessment of how far people with a disability have come in terms of disability rights is inherently negative stories such as Chen Guangchang come to mind. Have we made any progress since the 1980s--progress here in a cultural not legal sense? Legally yes culturally no. Many laws exist that are designed to protect my civil rights. On bad days I think there these laws are useless because there is no social mandate to enforce them. I am distressed by people in positions of power who hold an antiquated view of disability. Here Mayor Bloomberg comes to mind and his all out effort to have the so called Taxi of Tomorrow approved in spite of the fact it is not accessible. Bloomberg is simply one of many that think providing basic and what are known as "reasonable accommodations" is a matter of choice not law. And this is the real problem, American culture--something Robert Murphy noted when he wrote the Body Silent. In short, progress is taking place but at a glacial pace.


Monday, April 30, 2012

Comfort Care: Killing a Bad Cripple

Last friday an article I have alluded to was made available on line.  Here I refer to "Comfort Care as a Denial of Personhood". My essay can be read on line at: Please note Wiley, the publisher of the Hastings Center Report where my essay will appear in print later this summer has a very impressive pay wall. To access my essay you must subscribe. I cannot even access what I wrote!  However, I can post some quotes. The essay pertains to the severe wound I had in 2010 and in particular one experience I had late at night.  Let me be clear: I was very sick, critically ill. This is what transpired, an event that has haunted me. I was asked:

"if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.
This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people. The hospitalist went on to tell me I was on powerful antibiotics that could cause significant organ damage. My kidneys or liver could fail at any time. He wanted me to know that MRSA was a life-threatening infection particularly because my wound was open, deep, and grossly infected. Many paralyzed people die from such a wound.
His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live."

I never told anyone about what transpired. Not my family, friends, the nurses I saw for over a year when I was bedbound. I did not tell anyone for a very good reason: I was scared. Terrified really. A physician, a person who is highly educated, and I would hope free of any bias considered my life not worth living. Disability was a fate worse than death. It was the ultimate insult. People with a disability do not write about fear, we feel it I am sure, but few delve into how deadly cultural assumptions can be. Harriet McBryde Johnson and Kenny Fries are two exceptions--others exist I am sure. Doctors usually chalk this up to misunderstandings on the part of the patient and sweep such incidents under the carpet.  But as many people with a disability know critical care hospitals are a hostile environment.  I wrote:

"Hospitals and diagnostic equipment are often grossly inaccessible. Staff members can be rude, condescending, and unwilling to listen or adapt to any person who falls outside the norm. We people with a disability represent extra work for them. We are a burden. We also need expensive, high-tech equipment that the hospital probably does not own. In my case, a Clinitron bed, which provides air fluidized therapy, had to be rented while I was hospitalized. Complicating matters further is the widespread use of hospitalists—generally an internist who works exclusively in the hospital and directs inpatient care. The hospitalist model of care is undoubtedly efficient and saves hospitals billions of dollars a year. However, there is a jarring disconnect between inpatient and outpatient care, which can represent a serious risk to people with a disability. My experience certainly demonstrates this, as no physician who knew me would have suggested withholding lifesaving treatment."

When I showed my essay to a friend he was deeply annoyed. He thought what I wrote was counter productive. I was exaggerating the situation. He told me no one is out to get you and you are going to scare people. I replied people with a disability have every right to be scared. While no one wakes up in the morning and thinks I will discriminate against people with a disability, that does not mean discrimination is non existent. I am sure when I saw the film Million Dollar Baby and the audience cheered when the main character, Maggie, was killed I doubt anyone clapping thought they were bigots. But I was shaken to the core--the assumption clearly was one is better off dead than disabled. What exactly does that mean about the quality of my life? The belief one is better off dead than disabled has real life consequences I wrote about:

"people with a disability who publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest. Ironically, who is discriminated against? Those people with a disability who choose to live. We face a great challenge in that society refuses to provide the necessary social supports that would empower us to live rich, full, and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly “patient-centered”—buzzwords I often heard in the hospital. It made me wonder, how do physicians perceive “patient-centered” care? Is it possible that patient-centered health care would allow, justify, and encourage paralyzed people to die? Is patient- centered care a euphemism that makes people in the health care system feel better? When hospitalized, not once did I feel well cared for".

I went on to note:

"What I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word or am examined by a physician, it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it."

When I was stuck in bed at the end of 2010 and for much of 2011 I often thought of my mentor at Columbia University, Robert Murphy whose book The Body Silent changed my life. I had found myself socially isolated and miserable. I did not handle the situation well--my family can vouch for this assessment. Looking back, I realize now I was deeply depressed.  I am far from a social butterfly but being stuck in one's living room for a year will test the inner fortitude of any human being. But the point I am trying to stress is that one phrase from Murphy's book resonated in my head. Those that know me would likely guess liminality but they would be wrong. I realized one important thing when I was in bed. We people with a disability are no longer liminal beings--the ADA has seen to that and this is evidence of hard fought social change. We people with a disability can have a place in society--we are no longer on the outside looking in. We can force others to make "reasonable accommodations".  This is a battle but the law is on our side. However we are far from equal and I would maintain are "ambiguous people", our existence acknowledged but not necessarily valued or wanted. Thus I am convinced the next step in the evolution of disability rights will entail a social battle for recognition. The law is on our side but society is not. We have an ambiguous identity but that by itself is a sign of major progress. I absolutely look forward to what is to come. And today I am thinking life is sweet.  

Sunday, April 29, 2012

Anti Intellectualism: A Rampant Problem

"Greed is good". This well-known line is from the fictional character Gordon Gekko in the 1987 film Wall Street. I was reminded of this line after reading about what Mitt Romney told a group of engineering students at Otterbein University. As many will have heard Romney suggested young people take risk. He said "Take a risk, get the education, borrow money if you have to from your parents, start a business". And how much did Romney suggest students borrow? $20,000. This amount was not pulled out of thin air--it was how much the owner of a sandwich chain, Jimmy John's, borrowed from his father to start the business. As expected people have blasted Romney for being out of touch--and for good reason.  The vast majority of parents are either broke or in debt by the time they are finished paying tuition costs. What the vast majority of people have missed is an even more objectionable comment Romney made at a round table discussion with students. Thus the statement about borrowing $20,000 is a red herring.

Speaking to a group of engineering students he told them they were in high demand. High demand meaning they will likely get jobs upon graduation. Romney then speculated about the value of other areas of study and prospects for employment. He stated: "you really don’t want to take out $150,000 loan to go into English because you’re not going to be able to pay it back. You might want to think about something else that meets your interest”.  Romney believed he could make this claim because he was an English major. I could blast Romney as many Democrats have done on borrowing $20,000 from one's parents. Instead, I will comment on why his statement r.e. English majors is significant. Romney clearly believes an degree in English is not worth $150,000 of debt. You can't pay it back. So who can major in English? Only those that can afford it. This is bad enough but Romney's statement I take to be most damning is his suggestion those that cannot afford to major in English study something else. And what would that something else be? Business, engineering, computer science and other majors with perceived "value".  Perceived value here meaning a reasonable chance to get a job and start a career.  By implication majors such as history, anthropology, sociology, english, art history and others have no value. They are not worth $150,000 of debt.

Romney's take on the value of an education is not unusual. To me, it is an indication of a corporate mentality that has firmly gripped higher education, parents and students alike.  Higher education is no longer valued. It is a means to an end. Universities hire people like me--highly educated day laborers with no job security or benefits. Good luck finding a professor with tenure. They are a rarity. More classes are now offered at night than during the day as the vast majority of students are working at least 20 hours a week to pay for tuition. Many of my students miss class because they are forced to work late. Every class I teach has at least one student sitting in the back who struggles not to fall asleep. Students are simply too busy working to put in the needed time and effort to do well in class. I cannot get angry at students--they are likely accumulating major debt to pay for tuition. They are understandably worried.

What I worry about are the broader cultural implications.  That is what does it say about American society when a person like Romney thinks a degree in English is not worth $150,000 of debt. This statement is grossly misleading. I want to know why a college degree is so expensive. I worry about the fact tuition for a four year college education has increased an astounding 827% since 1980. I want to know why student loan debt has increased by 511% since 1999. I want to know why no one is discussing student loan debt that exceeds $1 trillion dollars. When I read these statistics I can think of only one thing--capitalist society is creating a permanent class of people deeply in debt. Worse yet, students in my classes are apathetic. They know exactly what they are doing. They realize the long range implications. The constant refrain I hear from them is always the same: "there is nothing we can do. That's just the way it is".  This sort of deep depression about the future reminds of the origin of Punk music in the 1970s in the UK. In college when depressed I would play the Sex Pistols song God Save the Queen over and over.  It was the unofficial Punk rock anthem. The lyrics seem particularly relevant today:

God save the queen
The fascist regime
They made you a moron
Potential H-bomb

God save the queen
She ain't no human being
There is no future
In England's dreaming

Don't be told what you want
Don't be told what you need
There's no future, no future,
No future for you

God save the queen
We mean it ma'am
We love our queen
God saves

God save the queen
'Cause tourists are money
And our figurehead
Is not what she seems

Oh God save history
God save your mad parade
Oh Lord God have mercy
All crimes are paid

When there's no future
How can there be sin
We're the flowers in the dustbin
We're the poison in your human machine
We're the future, your future

God save the queen
We mean it ma'am
We love our queen
God saves

God save the queen
We mean it ma'am
And there is no future
In England's dreaming

No future, no future,
No future for you
No future, no future,
No future for me

No future, no future,
No future for you
No future, no future
For you

Is there no future? I do not want to believe this but will readily admit I am worried. I am worried about my students and worried about my son. What will their future hold? These worries are connected to the implications of a Republican victory in the upcoming presidential race.  If Romney wins I fear he will be given a mandate to wage a war on the poor in this country of historic proportions. Republicans, galvanized by a presidential victory, will not just slash the social safety net for the poor but eliminate it entirely. I have no doubt those close to me, people with a disability, will be among the first to be targeted. These are troubling times and we need an educated public that refuses to be misled. Perhaps that English degree is worth it.