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Saturday, October 25, 2014

Brittany Maynard Lashes Out at Ira Byock

Last week Diane Rehms had Ira Byock and Barbara Coombs Lee on her nationally broadcast NPR radio show. Byock is one of the nation's leading palliative care physicians and author of Best Care Possible. Coombs Lee is president of the advocacy group Compassion and Choices, the well funded and influential lobbyist group that advocates for assisted suicide. As is the norm, the Diane Rehms show was heavily biased in favor of assisted suicide. Coombs Lee spoke at length and Byock was given very little time to respond. Again, this is the norm. Byock is accustom to this having appeared on PBS News Hour, 60 Minutes, and the aforementioned NPR radio program. I have met Byock twice. He is a kind articulate man and like many others is opposed to assisted suicide legislation. Those that oppose assisted suicide legislation voices are unwanted. Those opposed to assisted suicide legislation are given short shrift by the mainstream press. We depress people. We want to have a nuanced debate about end of life issues. We want a rational discussion to talk place in an effort to insure all people die well. This is not the sort of discussion people typically engage in. The mainstream press wants powerful and emotional stories. Enter Compassion and Choices replete with great visuals of dying photogenic people with heart breaking stories who want to complete their so called bucket list. The most recent terminally ill person Compassion and Choices has formed a PR campaign around is Brittany Maynard.

I wrote about Maynard and her video and photo shoot for People Magazine. Millions have watched her tear jerking video--it is exceptionally moving. Maynard has a devastating terminal illness. My heart truly goes out to her and her family. There is no question she will die far too young. None of these facts and sentiments are in doubt. In making her death about assisted suicide legislation Maynard chose to become a public figure. She is making the rounds at many news outlets and was recently at the Grand Canyon thanks to People Magazine. Below is a photograph from her trip published by People.

Maynard's story and advocacy for Compassion and Choices can be questioned. She has purposely opted to have a highly visible death. She has foregone privacy in an effort to advocate for assisted suicide legislation for every American. Given this, I think those that agree and disagree can freely comment on how Compassion and Choices is using her to advocate for assisted suicide legislation. Maynard is a political advocate. I find it impossible to believe she and her family are unaware at how influential she is or how powerful the images associated with her life and terminal condition have affected people. Her video went viral and has been seen by millions of people. Maynard via Compassion and Choices has not highlighted the soon to be tragic end of one young woman's life far too young but rather push legislators to pass assisted suicide legislation. To question her motives however is exceptionally difficult. The slightest critique is perceived to be in bad taste. For example, Byock stated: "I think, unfortunately, while not being coerced, she's being exploited by Compassion & Choices, as well as by the media's insatiable appetite for sensationalism. And I think that's a tragedy. I worry what will happen if she--her life still feels worth living on November 1. Will she then feel compelled to end her life in order to meet the public's expectations? I really worry this woman who is vulnerable and going through a wrenching time in life. And I--frankly, I wish her all the best". Like Byock, I wish Maynard the best. I cannot state this emphatically enough. I do, however, object to the blatant political actions of Compassion and Choices and exploitation of Maynard on the part of People magazine.

Brittany Maynard was angered by Byock's gentle critique or the circumstances surrounding her death.  She lashed out with the below comment:

I am Brittany Maynard and it concerns me that Dr. Ira Byock will speak on my "behalf" at all again. I watched a special on PBS where this same individual spoke about my case as though he knew personal details about me, saying some things that were quite frankly not true. For example, he said that a gentle death would be available to me easily through hospice, unfortunately that would be after a great length of time, with lots of suffering (physical and emotional), and loss for my young body. He is right that this is not being accomplished successfully for many terminally ill Americans on a widespread basis across our country. This needs to change too, I agree with him there. But perhaps most disturbingly, Byock claimed that Compassion & Choices had somehow taken advantage of me through "exploitation" and that I feel compelled to die now based on public expectations. I DO NOT, this is MY choice, I am not that weak. The day is my choice, I have the right to change my mind at any time, it is my right. I am very confident about this. This is a patient right that is critical to understanding Death with DIgnity. The claim of exploitation is utterly false considering I had gone through the entire process of moving, physician approval for DWD, and filled my prescription before I EVER even spoke to anyone at Compassion and Choices about volunteering and decided to share my story. I support the organization because I support the cause. I believe this is a healthcare right and CHOICE that should be available to ALL terminally ill Americans. I made my decisions based on my wishes, clinical research, choices, discussions with physicians, and logic. I am not depressed or suicidal or on a "slippery slope." I have been in charge of this choice, gaining control of a terrifying terminal disease through the application of my own humane logic. We as a country have real issues with the way doctors are trained to speak about, educate and embrace realities of death. As a terminally ill patient, I find it disrespectful and disturbing when people discuss my personal health with details that are not accurate to push an agenda. My request is that physicians speak only what they directly know to be factually true and have a right to discuss. The best change for all our community, physicians and patients, will come from us pulling together and developing policies to protect the severely ill based on honesty, education, and humane treatment of suffering. I wish nothing but peace and healing for whom it is available, and a peaceful passing of comfortable choice for whom it is not.

Byock publicly apologized to Maynard. Many have come to the defense of Byock. For example, Not Dead Yet released a press statement defending Byock. Link:
Byock is not commenting on Maynard's prognosis or health status. Byock commented on Compassion and Choices national on line video campaign designed to expand existing Death with Dignity Laws. Like Byock, I have the right to disagree with what Maynard has said. What Maynard does not want to acknowledge is that her impending death is, thanks to her decision to join forces with Compassion and Choices, a publicly debated event. Compassion and Choices PR campaign squarely centered on Maynard highlights that no person dies in a social vacuum. Death, especially an assisted suicide, is a social act. Here is what Maynard and Compassion and Choices dismisses: "There is no universally right way for a person to die. What constitutes dying well for one person might be entirely wrong for another. The word 'well' is both an adverb and an adjective. It can describe not only the dying process but, more important, the person who is dying". This quote can be found on page 81 of Byock's The Best Possible Care.

Maynard wants all Americans to be able to die worth dignity. I share that sentiment. The problem is that our ideas of dignity are radially different. Dignity like autonomy can mean many different things.  If I modeled my life around the current Death with Dignity Laws I would not exist. The reasons cited by those that choose to die in Washington include the loss of autonomy and dignity. Others concerns include losing control of bodily functions, being a burden on friends and family and concerns about pain. I have experienced each and every one of the aforementioned concerns. I have lost a degree of autonomy because I cannot walk and use a wheelchair. Many think my life lacks dignity. I have tenuous control of my bodily functions. I have without question periodically been a burden to my family. I worry about the pain I experience and am very concerned about being a burden to my son at the end of my life. You know what this makes me? Human. I am a human being! All life has value no matter how compromised or different. I valued my existence as a typical little boy. I value my existence as a middle aged crippled man. I value all people--typical and atypical. I value medically stable people. I value the last few hours of those alive and approaching death. Every last breathe I value. If you question this go read Dylan Thomas famous poem "Do not go gentle into that good night".

Friday, October 24, 2014

A Nasty Confrontation

I avoid confrontation. In my experience nothing productive comes out of a heated confrontation. This belief was reinforced Wednesday night. Wednesday is my long day. I meet students in the morning, teach an honors class in the early afternoon and then have a long graduate class in the late afternoon. My graduate class ends at 6:30pm. A long tiring day but on most occasions is exhilarating because I am blessed to have outstanding students. So, last night I was going back to my car more tired than usual given my trek back home from San Diego. I crossed Marshall Street, sort of college student restaurant row, and see a car parked on the side walk making passage pretty much impossible.  Thankfully the driver is present. A young woman is standing by the car. The driver door open and it is  obvious the woman is gathering her things post delivery (the Sliders logo and sign are dead give aways). I wait annoyed and silent. She looks at me and is instantly annoyed by presence. In a tired but firm voice I ask her to please move her car off the side walk so I can get by. My request is met with an annoyed or mildly mad "no". A bit taken aback I state I cannot get the car. She replies "yes you can. Have dog walk in front of you".  I will admit I might have been able to get by the car but the margin of error was razor thin. I had a heavy brief case on my lap and did not want to take even the slightest risk given it was pretty dark. I  reiterated I could really not get by. At this point, I was somewhat exasperated. In the same tone I asked "please move your car." I was doing my best to cut this woman slack. She likely was being paid minimum wage as delivery person for Sliders restaurant  located across the street. My request was met with open hostility. She went from annoyed to angry. She atto =d her ground not moving her car. I was not moving either when she said "Why do you have to be such an asshole?" I never dreamed the situation could escalate so fast. I will readily admit I was obviously extremely annoyed but I am good at retaining my poise. I stated yet again "Please move the car You can move it back when I pass by". She responds in a loud voice "Why do you have to be such a fucking asshole?" I am stunned. I tell this woman "what do you think will happen if I go to your restaurant and tell the manager what you just said to me. Move the car." Thankfully a pedestrian was walking by and had heard our exchange. This man was fully supportive of me. I looked at him and asked him if I was missing something. "No" he replied "hold your ground. She is being a jerk and inappropriate. If you want I will go to the restaurant with you to complain". Now out numbered the woman, after a long pause of silence, huffs gets in the car and begrudgingly moves her car about four inches off the sidewalk. As my newly acquired friend watches I pass the parked car. When I am well clear of the car I hear the woman slam her door and yell at me "Do you really need to be such a fucking asshole" and storms off back to the restaurant.

I am pretty torn up about what took place. I did not incite the incident. I was annoyed and tired. I could have been more polite. And here is where I force myself to stop and say no. This line of reasoning is wildly wrong. I did nothing wrong.  The woman parked her car illegally. She reacted badly. The confrontation was needless. I did not have the heart to complain and believe me I thought about this long and hard before I got in my car. Surely if I met the manager the woman would have been fired. Frankly, she deserved to lose her job. But it is mid terms week. She is working a minimum wage job that pays poorly. Being a female delivery person cannot be easy and I assume she is harassed often. I have lots of excuses for not going to Sliders to complain. I have replayed this confrontation many times in my head. I have concluded that this woman's anger is symbolic of a much larger issue--specifically an unspoken anger and fear of disability. The unarticulated anger was directed at me because I am the physical representation of all things disabled (think blue wheelchair logo sign as my self portrait). Like it or not wheelchair access is not valued and seen as an economic drain by many. Not all but the majority. Fear is involved because one and all know the disabled are a minority group that can be joined via one misstep or car crash. Both anger and fear are destructive and the under current can rear its ugly head at the oddest places and at the oddest times. I was in the wrong spot at the wrong time. I learned a lesson. Too bad the woman in question did not.

Tuesday, October 21, 2014

Airline Travel Wildly Inconsistent

I flew from John F. Kennedy airport to San Diego to attend the American Society of Bioethics and Humanities annual meeting. My experience, as always, was a mixed bag of negativity. I love to travel but despise airlines in particular and mass transportation in general. I get that all people are treated poorly by the airlines. Airlines are akin to very expensive and technologically advanced busses in terms of how they operate. I understand every inch on an airplane must generate revenue. After almost 40 years of traveling via wheelchair there is no doubt the airlines think I represent extra and unwanted labor. I am not a typical customer but rather an expensive and unwanted drain on man power. I also know my wheelchair takes up valuable space in a cargo hold. I could go on but you get the point--the presence of anyone that uses a wheelchair limits profit. With profit margins razor thin, I realize why an ingrained anti-disability framework exists in the airline industry. This is not uncommon. Other industries are hostile to disability foremost among them the health care industry. I never expect to have a positive experience when I fly. In the post 9/11 era I have a 500 to 750 mile rule. Any destination I desire must be in excessive of the aforementioned miles for me to get on a plane. The hassle is just not worth it. The stress I feel when flying is exceedingly high. Will I be injured by airline personnel who have little or no training? Will my wheelchair be damaged or lost? Will I be stranded for hours waiting for help? Can I tolerate the people I will be forced to interact with?

My thoughts were dominated by the above questions flying home from San Diego on the red eye. I left San Diego at 9PM and landed at JFK at 5AM. I do not ever sleep on air planes. I spent the night reading and lifting off my skin every ten minutes for the entire night.  How I wondered could flying be made easier for people that use a wheelchair? As of today, flying is routinely miserable. I always assume the worst. Airline personnel will be rude, uncooperative if not down right hostile. I assume TSA agents will act like, slow inconsiderate drones. My fellow passengers are unsupportive and typically look away when I am treated by airline personnel as though I am sub-human.  On that long red eye flight lying home I was struck by the angst I experience. Forget the social abuse and physical barriers. What makes me crazy is the inconsistency. For instance, at JFK I got a serious pat down by the TSA. This is usually a cursory examination--more show than security. The back hands of the gloved agent touch me all over my body.  A wand is spread over my wheelchair supposedly checking for residue of explosives. An utter waste of my time but required measure of control. The TSA agent at JFK gave me a real pat down. He was very firm with his touch and on the cusp of inappropriately hard. He touched every part of my body firmly. He checked my waist band, under arms, and legs. His touch was so hard he triggered spasms and asked why I was moving. I told him the movement was involuntary response to his firm touching. The TSA agent had me lean to one side then the other. He looked under my wheelchair in detail. This is, I suppose, text book. The text here for corrections officers working in a maximum security prison. I know enough to keep my mouth shut.  Dissent and objection is a very bad idea in any airport thanks to the Patriot Act.  I have no interest in disappearing as an enemy combatant. Did I object? Well, as a matter of fact I did. Upon completion I dryly noted "Thank you that was a text book pat down". He did not get it. In fact he took it as a compliment. Fast forward to my return  through the TSA. The TSA agent that patted me down never touched my body. Not once did gloved hands touch me. Perhaps I can thank Ebola for this as the vibe from this man was as though my disability was contagious. I flew through security with only a cursory glance.

I wish I could have an ordinary experience flying. I wish I could know what to expect. I wish I did not have to worry about getting injured getting to my seat. I wish the people that helped me on and off the plane were professional and not low paid and exploit employees hired by a second party responsible for assisting me. Leaving San Diego the two men tasked with assisting me did not speak a word of English. Not one word. Not seat. Not wheelchair. Not strap. Not feet. They were nice men who did want to help but the language barrier prevented basic communication. We were left to mime and point to work together. The message here is not sublet. I have no value. My life is not as important nor is my business in comparison to those that are bipedal and indecent within a very narrow range. I cannot envision this ever changing.

I cannot end on a depressing thought. Instead I will note the cross section of humanity that boarded my flight was interesting. A man four rows behind me snored loudly. Think freight train loud. This made me think of the Boy Scouts and some of the leaders whose snores were amazingly loud. What struck me though in terms of good feelings was the two young women sitting next to me. They were obviously intimate with one another. They were discrete but affectionate. They clearly had a wonderful bodily ying and yang.  Such movement is wonderful with a lover. It prompted many fond memories of my experiences with my long time ex wife when I was a young man. Better yet it made me think social progress is possible. Twenty years ago such affection between two women was not possible in public. We briefly spoke at the end of the flight about college life. I really enjoyed their company and for the first time in my life my fellow passengers offered a measure of support. I had explained I would be the very last person off the flight. They appeared shocked. They wondered why was I not the first person off the plane. I briefly told them about how terrible the airlines and how many law suits take place per year. After a short silence they each asked if they could wait with me or  help in any way. Wow, these young women got it. The way I am treated is wrong. They made that leap in logic in mere seconds.  Maybe there is hope after all.