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Saturday, May 3, 2014

Life is Not Fair: Moving Past a Trite Old Line

At some point in life I think every human bemoans their lot in life. Some might wish they had more money. Some may desire a better body--taller, skinnier, more muscular, less or more hair, etc. Many associate the line "life is not fair" with typical teenage angst. Most parents I suspect have had their teen yell at them "I did not ask to be born" or "Life is not fair". My son never invoked the line "I did not ask to be born" but more than once stated "life is not fair".  When he told me this I look him in the eye and said one word: "correct". This was not helpful as my one word reply enraged him. The teen that stated this is now a young man about to graduate from Hofstra University. I am worried about him in an abstract sense. I worry about his ability to get a job. I worry about him dropping off the grid. I worry if life post graduation, his start of adult life, will be "fair" to him. This of course is well beyond my control. My hope is I taught him the important life lessons needed to survive and thrive. Part of me envies him--his entire life is ahead of him. Part of me is fearful: mistakes as you get older only increase in their magnitude.

Life lesson number one is life is not fair. Get over it and do so fast. I learned this lesson when I was a little boy. I vividly recall the initial stages of being morbidly sick. I was scared and in intense pain.  When my parents brought me to Columbia Presbyterian famous Babies hospital in a desperate attempt to figure out what was wrong I quickly learned life was not fair. I was in fact lucky. I had the best parents a child could wish for. I had a great doctor--Arnold Gold--who would become akin to a second father care for me. My peers were not so lucky. The vast majority died. Even as I child I could figure out which kids were not not going to live. I avoided them. I played with my army guys in bed and kept my head down. Life was not fair for sure but I was smart enough to look around and see almost all the other kids were in much worse condition than me. I also spent hours looking out the window at Broadway and the San Juan theatre across the street. Homeless and poor people abounded. All I saw at night were poor and cold people wandering the street some of whom, desperate to get warm for a few hours, paid to see a movie they did not care about. I saw physicians running in the street too. They were ghost like apparitions flowing in a blur of white and blue. I feared them.  They gave me nightmares. They were the men and women who would cause me great pain. Spinal taps, surgery, and the dreaded sub basement of the Neurological Institute where the most horrific diagnostic tests were performed. To this day if I am in an elevator and see the letters SB lit up I break out in a cold sweat and shake violently.

Life is indeed not fair. I am grateful to have had that concept drummed into me before I was ten years old. My inner child, as I recently told a friend, died long ago. Life is not fair. Got it. I thus quickly transitioned to an interest in social justice. Why were people poor? This to me was really not acceptable. Why did I live in a gorgeous house in the wealthy suburbs when I saw poor people every day.  Poverty appalled me. Lousy parents shocked me. I thought poverty was a mother that worked and was not home with a house full of kids. I learned everything I experienced and was taught was a fairy tail. Wealth is rare. Poor people abound. Life itself is never a given. I assumed like all my peers I would die. Dying was the norm. Poverty was the norm. Injustice was the norm. Pain was the norm. In fact pain was my best friend for a decade. If I could think and experience pain, severe debilitating pain, I was alive. I clung to my parents and Arnold Gold like they were a life preserver. Most of all I survived and endured. My bodily condition and deteriorating neurological condition was the price paid for life. This was not such a bad deal. I never felt sorry for myself. All I needed to do was look to my right or left and see a friend in much worse shape. Eventually I learned not to look around at all. Think Lord of the Flies.

Life is not fair. I find adults that state this baffling. This thought was reinforced today when I read Rolling Around in My Head, a wonderful blog maintained by Dave Hingsburger. See: This morning he wrote about a person whose cancer returned and the reaction it caused. Life is not fair was invoked and then directed at Hingsburger. He was deemed unworthy of life by comparison to the person with cancer. He wrote:

I deserve death.
She deserves life.
That's how it breaks down. My fat, disabled body moves me from the category of one who has the same right to life and to love and to purpose to the category of person who is simply expendable. I can easily imagine a group of students given the exercise of choosing which one of the passengers would be thrown off the boat to save the others. I'm that guy. I had suspected all along that I'd be that guy - but now I know, for certain, that I am.
I have always been terrified by the slow crawl our society is making towards embracing the idea that it's OK to kill someone for their own good and for the good of the tribe. I am terrified even more now.

This is the life boat ethics Tom Koch wrote about in his book Thieves of Virtue. Welcome to a brave new world of bioethics perhaps more accurately described as biopolitics. The world has become a scary place for those that dare to live with a different body; a fact graphically illustrated by Sheri Fink in her book Five Days at Memorial. Of all the horrors she wrote about in the days that followed the Katrina disaster in New Orleans was the story of Emmet Everett. Mr. Everett was a Honduran born blue collar worker who had a freak spinal cord stroke. He was in the hospital awaiting colostomy surgery. He was medically stable. He did not survive Katrina because having dark skin, being paralyzed, poor, and over weight was a lethal condition. The behavior of the health care professionals involved in his care was disgraceful if not shameful and likely illegal. As my friend Steve Kuusisto asserted last month the staff at Memorial hospital were cowards. Everrett needlessly died as did many others. 

Back to Dave Hingsburger who wrote:

I imagine myself ill.
I imagine people deciding that I need, not repair but elimination. That I need medicine but not the kind that eradicates disease or illness but the kind that eradicates the 'likes of me... one person letting another know that in a fair world - my life would be taken, swapped for someone more worthy.
In a fair world.
I'd get what I deserved.
Yet people tell me, those who support the kind killing of disabled people, that I have to trust that it would be done in a fair and compassionate way.
Well, I guess, I wonder 'whose' fair would that be?
And, I guess, I wonder 'whose' compassion would that be?
I love my life. That may not be fair. But I do.

I do not need to imagine the scenario Hingsburger described. I experienced it. Many people with a disability have experienced it. Many elderly have experienced it. This makes me shudder. The work of Thadeus Pope, an appropriately respected scholar, makes me shudder. The push for assisted suicide on the part of groups such as Compassion and Choices, makes me shudder. The death of Christina Symanski who died via VSED and with family support makes me shudder. The death of Tim Bowers with 24 hours of a devastating spinal cord injury makes me shudder for he too had family support. The chill and shudders I feel this morning has transformed me back in time. I feel like a sick little boy looking at the window of a neurological ward. It is late at night. It is quiet. It is cold. I can feel the cold against the aged window pane. I look down and see a tidal wave of poverty moving about. Poor men and women shuffle along. I do not fear these people. They like me know life is not fair. I fear the blue and white apparitions that quickly flow by outside and inside the hospital. I shudder to think I knew who to be afraid of when I was 10 years old. I am still shuddering decades later. 


Dave Hingsburger said...

Hi, thank you for taking my post and using it here in yours. You've created something quite profound. I am going to link to it over at mine, I hope you don't mind.

william Peace said...

Of course not. Perhaps this summer we could meet in Toronto if our schedules permit.

Unknown said...

Very powerful and moving post Bill. Thank you. I find your reflections about the years you transitioned from a normal boy with a typical life to a great man with a disability to be profound and important.

After thinking about these bioethical issues for years after my infant daughter was deemed "not worthy", I see clearly that once we start to judge, there is no end to judging. Ultimately, we will all be judged.

I predict that one day, society will come to its senses and realize that what is most important to maintaining a humanity are attributes like love, compassion and empathy. In the absence of these, it would be a dog eat dog world and society would be merely intelligent animals, or worse. Hopefully, one day all of those who presently are or who feel threatened will finally be understood to be the greatest contributors.

william Peace said...

Barb, Thank you for your very kind words. There were many good things about growing up as I did. I learned a lot about the character it takes to survive. This character was demonstrated each and every day by my parents. They gave me heaping doses of love, compassion and empathy. This is exactly what i see you do for your wonderful family. Sadly, I do not see evidence society will change for the better any time soon. But you are correct this is something worthy of striving for so all hope is not lost. I suspect it never will be.

Michael Watson said...

Bill,Thank you for this deeply thoughtful post. My response to the experience of intense childhood illness is to want control. I do not want to have to depend on others to care for me; mostly I don't trust people. I guess its "a Polio thing".I also don't want to be a burden. Of course my family would fight with me on this, would want me around, wound wish to care for me. The problem lies in my need for control. I find myself still, after all these years, still terrified of being trapped and powerless. The iron lung casts a long shadow. Because of this, I am less clear about AS, although I clear that the choice should be the sufferer's and there should be absolutely no intimidation.I'm still thinking about this issue with my mind and heart.

william Peace said...

Michael, I bow down to polio hard asses. I thought i had it bad in the late 1970s but you guys were tougher than tough. Lack to trust is not a polio thing. It is healthy reaction when accessing health care today. I trust no one. You mention control. I get this too. So much is needlessly out of control for paralyzed people. Bioethicists would call this autonomy. Clinicians would invoke the phrase patient centered care. I would suggest you ease up on your desire for control. The fact is we do not enter the word autonomous and the odds are good we will not die autonomous. Autonomy and its lose is nothing to be afraid of. Autonomy ebbs and flows during our lifetime. Hence we are under the impression we are autonomous agents. This is what those that push for assisted suicide rely on. Our fear and fear sells. Autonomy is situational and we need a far more nuanced understanding of what autonomy entails. We do not need assisted suicide legislation we need a caring and compassionate approach to end of life care.