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Tuesday, October 9, 2012

Mercy: Please Do Not Be Merciful

Sunday I read a dreadful story in the NY Daily News written by Wayne Coffey. The story in question, “Tender Mercy: A Horrific Football Injury, an Assisted Suicide and a Family Trying to Spare Others”, made my blood boil. Dreadful does not convey just how terrible the story by Coffey was. I have low expectations for tabloids such as the Daily News and even lower expectations for sports writers in general.  Coffey’s article was maudlin in the extreme and essentially an advertisement for a new book, Like Any Normal Day by Mark Kram. Coffey wrote that Kram’s book was “brilliant” and “heart wrenching”.  Coffey’s story and Kram’s book details the life and death of Buddy Miley, one of Jack Kevorkian’s victims in 1997.  Like most of the people Kevorkian killed, Buddy Miley was disabled and not terminally ill. What drove Buddy Miley to seek out the infamous Dr. Death? Miley had a spinal cord injury when he was in high-school. Coffey makes it clear such an injury is a fate worse than death. Coffey does not stop here—he goes on to make it quite clear Buddy Miley’s brother, Jim, is a heroic figure and their mother is a saint. Jim Miley is portrayed as a man who could keep a secret and help his brother die. 

Coffey’s article is filled with such gems as the following:

For almost a quarter of a century, Buddy had been imprisoned in a broken body, helpless in almost every way”.

Buddy also knew that brother Jimmy, the youngest of seven kids and more than six years his junior, was the one person he could count on to honor his wishes—and keep it a secret. And so begins a story of a brother’s bond, a families heart ache and Jim’s journey to an impossible intersection of life and death and the hopelessly complicated issues that surround them, all of which pivot on a single question: Is it an act of mercy or murder to help someone you love take his life?

It was such an act of devotion, Rosemarie Miley says, Can you imagine what Jimmy went through?

They all prayed for a miracle… It killed him [Buddy Miley] that his mother’s whole life revolved around caring for him as if he were a newborn”.

Buddy would often say I hope God gives me a heart attack tonight”.

From the day of the accident until 1997, Rosemarie was Buddy’s No. 1 care giver, changing him, feeding him, loving him”.

Clearly life after a paralyzing injury is nothing short of horrific. It destroys not just the life of the “victim”, Buddy, but derails the life of the entire family. Jim Miley’s baseball career was destroyed by poor choices and his overwhelming belief he needed to be with Buddy.  Buddy’s mother was called “Saint Rosemarie” by the family. Why was the mother a Saint? According to Jim Miley she “was the only one that never left. Others would say I’ve got to get out of here”.  
I find much of this story distressing. I do not find the family response inspiring or heart wrenching but rather inherently demeaning to Buddy. I do not doubt they loved Buddy and did what they thought was right. I do question the larger issues associated with Buddy Miley’s life and death. For instance, three years before Buddy Miley’s  assisted suicide Rosemarie Miley wrote to Sports Illustrated about her son Buddy in response to yet another spinal cord injury that occurred in an NFL game.  She wrote:

My son broke his neck 19 years ago playing high-school football. Since then our home has been hell on earth. The injury has altered the life of our family and the lives of our son’s friends. I am sure the majority of readers love football. I ask them to spend one day with my son.

When I read stories like this I shake my head in wonder. I am also transported back in time to those first rough years when I was first paralyzed. Those were hard times physically and mentally. But my parents were hard people—hard and loving. I was constantly told my mind worked and that is what makes us human. I was no different than any other person. I was going to be held to the exact same standards as my siblings. Not an ounce of sympathy was ever expressed.  I was the same person I was before I was paralyzed.  I could and should adapt.  Life moved on and do not dare feel sorry for myself.  All I got was unmitigated support from my family.

Given the above, I just do not understand families like the Miley’s. Deeply religious they took their son to a Pat Robertson crusade and Lourdes, France to visit the healing shrine. My folks were deeply religious too (heavy duty Catholics) but they never prayed for a miracle cure. This, they knew, was inherently demeaning. Prayer was a central component of my parents life but their beliefs were a private matter.  More to the point, why did Coffey not see what is obvious to me: paralysis is not the end of a so-called normal life. Well-established methods of adaptation exist. No one who is paralyzed should suffer. Sure being a quadriplegic creates a set of issues I have not had to adapt to. But quadriplegics, virtually all of them, learn to adapt and move on with life.  Again, I do not get it.  We have had decades to hone care for the human body after paralysis. It is not complicated. Anyone can adapt.

The most disturbing aspect of Coffey’s article and by extension the book by Kram is it sells the idea assisted suicide is and should be a legitimate option. I would ask an option for who?  Proponents of such legislation and groups such as Compassion and Choices, contend you should be able to control how and when you die.  Proponents claim multiple safe guards will be put in place. Assisted suicide will apply to only those with less than six months to live. All the safe guards in the world will not protect people like Buddy Miley. When a physician or beloved family members ends the life of a person like Buddy Miley or Daniel James and others with significant disabilities it will not be perceived as a criminal act. Instead such a death will be deemed an act of mercy; an expression of great self sacrifice and love. Jim Miley stated in the Coffey article “Even if I went to jail, that would not have changed anything. I would’ve done it. It’s what Buddy wanted. He was the quarterback and he called the plays. I just ran them”. Let me pose one final thought: what if Buddy Miley was not a quadriplegic. What if he was deeply depressed after a serious car accident and in the midst of an arduous recovery that would require many surgeries and a year or more of rehabilitation. Under these circumstances there is no way an assisted suicide would take place. To me, this is proof positive a double standard exists. As such I consider myself and other paralyzed people to be a class apart. This worries more than you can imagine. 


Elicia said...

I liked hearing about your parents. My son's disability isn't accidental in the same way yours was (he has trisomy 21) but I also feel no need to pray for a "cure." He is who he is, and loving him for who he is gives him dignity and recognizes his life as a valid expression of humanity, even if he is different from most people. I don't feel downtrodden and burdened by him...the extra therapy he requires has been our pleasure to provide. He is only 4 months old so I guess my feelings could change! But it is nice to read about how much you like your life and how vocal you are, partially due to your parents' attitude about your disability. It makes me feel like my attitude about Daniel really matters when it comes to his future happiness (and I realize his disability is very different than yours!). Thank you! I hope I phrased everything correctly and wasn't offensive. :-) And if I was, please let me know!

william Peace said...

Elicia, My family is awesome. I tell people I hit the parent lottery. In my experience the most successful and well adjusted people with a disability I have met all share one thing in common--strong and supportive parents. The type of disability is not important--the key is accepting your child for who they are. I have no doubt you love your son with or without trisomy. There is no question he feels your love even at four months. Good luck! It is such an exciting time in your life.

Elicia said...

Thank you. Sometimes I fear that the general public view assisted suicide much like they do abortion for reasons of disability...1. They assume the quality of life for that person to be much worse than it has to be or is for most people with that disability, so they view it as "mercy killing", and 2. They don't want to have to help anyone with a disability through life for selfish reasons, so they really only talk about #1.

I am opposed to assisted suicide and abortion for that reason. I imagine it must be extremely scary and hurtful that some people view your life ( and the life of my son) as disposable and inconvenient. I know it is hurtful to me.

Matthew Smith said...

I've been watching the discussion about abortion in the British news recently (prompted by one politician saying he favoured reducing the time limit to 12 weeks, a personal view that has no hope of becoming law), and I noticed that some feminists advocated scrapping the time limit altogether, so that people like one woman who used drugs ordered off the Internet to terminate a pregnancy in the last trimester (for personal reasons) and was given a jail sentence of several years wouldn't be prosecuted. Of course, if that baby had been disabled, or even had any trivial defect such as a cleft palate, what she did (at least if performed by a doctor) would have been legal. It goes to show how utterly selfish some feminists are - only women matter, it's all about the woman's choice because it's "her body", even at 8 months. They will never accept the need to restrict abortion so that babies cannot be aborted for these sorts of reasons, or to produce sons because daughters are undesirable. I find the disregard for human life, particularly that of disabled human beings, really quite disturbing.

william Peace said...

Elicia and Matthew, I am not going to comment on abortion and a woman's right to control reproduction. It is simply far too complex of an issue to address here. However, I can emphatically state that the lives of people with a disability are not valued. Our lives are seen as less, diminished, and our right to exist open to discussion. Peter Singer and utilitarian philosophers are quite skilled at articulating this via QALYs and other supposedly objective criteria. I find the fact others consider my life as inherently "bad" disturbing and will do everything in my power to foster social change. Far too many people with a disability have had their lives crushed and dreams shattered by bias and baseless prejudice.

Unknown said...

I spoke out recently about assisted suicide and got some backlash (of course).

This morning my boyfriend heard on NPR a pro assisted suicide person say that the *majority* of people who request it are not in physical pain. Most people request it because they "can no longer do the things they enjoy."

He called me up and told me, "She made your point."

Clearly, what is needed is resources, support, and education. Not death. I've yet to find a single thing that a paralyzed person cannot do (obviously there will be adaptations and creativity about the how).

william Peace said...

Ruth, Superficially the belief we should control the end of our life makes sense. However, scratch the surface and a host of troubling problems become readily apparent. So, yes back lash is common when you state you are opposed to assisted suicide. Adding to the problem is that the subject matter is polarizing--people are either all for it or opposed with deeply entrenched views. For cultural reasons Americans do not discuss end of life issues. We should as it is an experience no human can avoid. I for one am in support of a vibrant hospice movement, a level of care too many enter into mere days from death.

Phil Dzialo said...

Much confuses me in this dialogue and it focuses on the use of words and argumentation where there are worlds of shadow between concepts. For example, abortion (I am pro-choice); selective abortion based upon genetic screening for sex or disability,(I am vehemently opposed.) I oppose suicide/euthanasia as an option to life being based upon total dependence on another, I support physician assisted suicide for terminal adults who choose a good death. These are areas which lie in the shadows and merit much dialogue.
Ruth says "I've yet to find a single thing that a paralyzed person cannot do (obviously there will be adaptations and creativity about the how)" That's crap, come and meet my son! I love him and care for him 24/7, but despite every attempt at adaptation for 14 years he can do nothing but make me happy! That's something and I value him more than I value the most abled.

william Peace said...

Phil, I know you support assisted suicide. I reject the term physician aid in dying or what ever bland term Compassion and Choices comes up with that sounds acceptable to the general public. We simply respectfully disagree. As for Ruth's comment, I am sure she was referring to a person such as myself who is paralyzed and does not have any cognitive deficits. As I have often joked here, walking is over rated and that is about the only thing I cannot do.

Unknown said...

You're right, Phil. I'm sorry! I'm so focused on physical disability that I leave cognitive and all other disabilities out of my thought process. I know very little about those disabilities, so I can really only comment on physical disabilities, as Bill said.

It is a complex issue, of course, as they all are. I have a hard time having a firm position on anything at all, actually. I guess my usual philosophy in life is to take everything on a case by case basis. The law is somewhat geared towards that, but there's some big flaws with it.

For the most part I leave the big picture thinking to people like Bill and I try to exercise love and acceptance in the small moments of my days.

RandomThoughts said...

i do not believe in abortion unless you've been raped. disabled people's right to life are being continually violated in the USA.
We're disabled and had our safety put in danger for last 18 months due to so many dogs running loose & attacking our dog, just east of Hartford, Connecticut.
We cannot run away from a K9 dog or a Rottweiler, either, which police are insisted can run right up to us, terrorize us & maybe cause our death.
People have little, if any regard, for disabled people, esp. women!