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Saturday, October 11, 2014

The Latest Photogenic Face of Assisted Suicide

Art Caplan is a big man with charisma. The mainstream media considers him to be America's bioethicist. Caplan is more than willing to pontificate on any and all subjects related to health care. I cringe inwardly when I see his name in the news. Hence it was with great trepidation that I read his views on Brittany Maynard. Maynard's story has gone viral. I assume most people have read about Maynard but I will briefly mention the highlights. Maynard is 29 years old. She is an attractive woman, recently married, when she started to experience severe head aches. She was subsequently diagnosed with an aggressive and lethal type of cancer. There is no question her condition is terminal.  Her stated desire is to die with dignity. She wants to control the end of her life and like many she wants to die in her own home. This desire led her to move from California to Oregon where assisted suicide is legal. She plans to kill herself on November 1. Over the last few decades people have made similar claims. Most people who make such proclamations do not follow through with their desire to commit suicide.

Two things make Maynard different. First, for people such as myself opposed to assisted suicide she is in Caplan's words "the new, self-proclaimed face for the right to die". Caplan goes on to note that Maynard "is partnering with  the old warhorse non profit Compassion and Choices". Maynard is the perfect choice for Compassion and Choices to partner with to use Caplan word. I would sourly note she is the perfect person for Compassion and Choices to exploit. Second, Maynard is not different from myself and many others I know who are opposed to assisted suicide. I am what Syracuse University likes to call a public intellectual. I am also an activist in the sense I am on the board of Not Dead Yet, a grass roots organization that vigorously opposes assisted suicide. Thus Maynard and I share one thing in common--we are both activists but on the opposite side of the fence. What makes Maynard different is the slick packaging of her life into a tear jerker like framework. She is unquestionably picture perfect for Compassion and Choices. The emotional manipulation via imagery involved is over the top.  It is a dodge, a shell game. Replace fact with emotion. Maynard's role is to incite sympathy without thought.

What could be a worse tragedy? A slender young woman in a gorgeous wedding dress holding hands with her dashing husband. But this is not enough. Yes there is more! We also get to see her with a broad smile sitting in a comfortable chair holding a puppy. Not just any puppy but what looks to be a labrador retriever--the most popular dog in America. The not so subtle leap of logic is that she will never conceive or give birth to a child. This sort of imagery is designed to do one thing: prompt tears over the tragic life and near death of a young woman. One feels sad for her husband and family--and believe me I truly do feel sad for her family. I also feel angry. I am not angry with Maynard. What bothers me is the knee jerk reaction and out pouring of pity. She has complete and total support via superficial outlets such as People magazine and just about every television talk show and news program. Maynard has created the perfect media firestorm. The fact she has not added anything new to the debate for or against assisted suicide does not mater. The viral nature of her story is perfect for contemporary news cycles. Her story over the next few weeks will reach a fever pitch with a perfect ending. Her death. Should she choose not to commit suicide she will slip into oblivion--her proverbial 15 minutes of fame used up.  I wish I could say I am surprised by how positive the reaction has been to Maynard. She is ever so brave! Sorry but I do not think so. I think she is blatantly trying to push legislators to pass legislation now. How exactly can you say no to this woman if you are a politician and plan on getting re-elected?

Six million people have seen the below video. The comments have thankfully been disabled.

Aside from being manipulative, I cannot helped but be struck by the privilege involved. Maynard has a wander lust for travel. With a dreadful sound track she said she and her husband were actively trying to conceive a child. She has a wanderlust for travel says her mother. She vacationed in the wine country. She went to Yellowstone with a friend. She went to Denali National Park and met her mother in Juneau. She hopes to go to the Grand Canyon. I am glad Maynard was able to make all these trips and hope she gets to see the Grand Canyon. I wonder though how many other people with terminal illnesses have a comparable experience? I would suggest the majority of people with a terminal illness spend a lot of time on hold arguing about what treatments are or are not covered. I know I sure as heck have had to fight long and hard with insurance companies over my health care.

To reiterate: no new ground is being broken by Maynard. What is different is the timing and imagery that make her story impossible to ignore. Many tears will be shed in an effort to quickly push through  assisted suicide legislation. Who wants to have a serious debate about end of life after having their heart broken? We do not need thought we need action and we need action now! Maynard is sure to remain in the news for the rest of October. If she does indeed commit suicide the story will continue for a finite period of time but not interfere with Thanksgiving day football games. Her funeral will no doubt provide equally emotional visuals. I am not thrilled to pen these words--they are hard in the extreme. I am sure she believes the passage of assisted suicide legislation will give her short life meaning.  I understand this sort of reasoning. While I am not dying, I get tremendous satisfaction advocating for other people with a disability. Lost in the sea of raw emotion is the simple fact there must be a counter point. For me that counter point is the unwillingness to consider even the most ill or most disabled lives have value. Maynard is unwilling to explore a different, albeit very short, life experience.

In the video above, Maynard's mother stresses how she wants her daughter to be autonomous. Autonomy here is very narrowly defined--a typical life. The typicality requires an average life expectancy, happy marriage, kids, employment, and travel. I have enjoyed many of these wonderful aspects of life. Raising my son and watching him turn into an adult has been and remains the best part of my life. I too have traveled extensively. I have done all this with an atypical body. Never as a young boy could I have imagined life as a paralyzed man. But paralyzed I am. I have led a good life knowing my mere presence was too often unwanted and onerous to others. I have encountered barrier after barrier both physical and social. The world is not designed for people like me. The point is Maynard and others who support assisted suicide cannot imagine the life I have led and enjoyed. The lack of imagination on the part of others when they see me deeply bothers me. I know what most people think: paralysis is bad. Using a wheelchair is a fate worse than death. Terminally ill people that want to die are brave souls! People with a disability that want too die are brave too. I could never live that sort of life. This emotional reasoning is devoid of logic and the ability to adapt is wildly wrong. It is living that counts. All humans are intrinsically valuable--that includes Maynard, myself, people who are terminally ill, elderly and disabled. In short I reject the romance Maynard has with dying. I rail against a society that applauds people like Maynard who want to die and at the same time undermine the ability of those that need social supports to live a good life.  What Maynard is turning her back on is the interconnectedness of all people. A good death need not involve a lethal prescription and advocacy for "an old war horse" like Compassion and Choices. A good death can be achieved in a multitude of ways. I can say the same thing about life. There many paths our lives can take and I for one find it sad Maynard has knowingly allowed herself to become the face of the so called right to die.  I would rather be known for how I live not the way I died.


Home Make said...

So true, brother. Only yesterday, a cheerful bus driver helped me off with the ramp, then said to me "it,s good to see you so happy! I couldn't in your position." So I smiled, nodded towards my beautiful children and said confidently "you would, you just don't know it yet. " :-)

We're not dead yet!!

In solidarity, from a NDY UK activist

Moose said...

Ok, I get it. The stuff is overly pushing on emotional buttons.

But this woman is not disabled. This woman has an aggressive cancer. I cannot see another end of life for her that is not lying in a bed, painfully going in and out of consciousness while her family gets to watch her linger and eventually die. Worse, studies show she's likely to suffer from the pain because even in hospice situations doctors grossly undermedicate for pain, as if there's a worry of addiction from someone guaranteed to die in the short term.

People like her ARE the reason I believe in assisted suicide. For me, it's not about disability; it is about pain. I think, sometimes, that the problem is like trying to explain the colors of a rainbow to someone who cannot see them. I've seen others in and experienced, myself, pain at levels that cannot be imagined. A year before I'd had a kidney stone and thought that was the worst ever, only to find that pain can get much, much worse. I cannot begin to describe the anxiety that comes with the thought of experiencing this pain again, yet my situation is a sword of Damocles - it will return.

I have no idea if the pain of end-stage cancer is better or worse than what I've felt, but I have zero desire to find out. Nobody should have to find out.

william Peace said...

Moose, We agree on the over the top emotional aspect of Maynard's story. I agree Maynard is not disabled. She will knowingly end her life before she becomes disabled. Thus her stated desire to die is indeed about disability. By logical extension she assumes end of life will involve disability and that sort of life has no value. Statistics from Oregon and Washington clearly demonstrate people do not end their life because they are in pain. The loss of autonomy and fear of being a burden to family are the primary reasons people end their life. I will also disagree over pain. There is no need for people to die in pain. Top notch pain control is can control via hospice care is routine and effective. Not all agree on this point but again look at statistics that are reported in Oregon and Washington. Sorry but we will have to agree to disagree over this story. And thank you for being polite and civil.

Sara Buscher said...

Maynard strikes me as flailing about grasping for control. In this sense, she is in denial; thinking only of herself. I cannot imagine how painful it would be to have someone I love kill themselves. Yes, the natural death will be painful to watch but we can feel connected to the very end. If you love someone, you want that connection to last for as long as possible, whether you are dying or you loved one is dying.

william Peace said...

Sara. I feel bad for the family. The thought of dying at home in the bedroom she shares with her husband is romantic notion. I do envy him. Sleeping in same bed and bedroom where my wife died. Sorry I will pass on that idea.

Karen23 said...

Moose, I disagree. I am strongly against legalized assisted suicide precisely because of the experiences I had helping my father through the process of dying from cancer. We did home hospice, with me as the sole caregiver except for people who stopped in a couple of times a day to help change diapers. Yes, I watched him go in and out of consciousness, linger and eventually die. It was sometimes awful, but overall, I would not have wanted to miss the experience for anything. We bonded very deeply, so that it felt as if his dying was a team effort -- to the point that it was a little startling to grasp when he got to the point where he would have to continue the journey without me. A few days before he died, he told a friend that it was worth everything he had gone through "because I got to know my daughter." I kept him dosed up with morphine so that only once did he have bad breakthrough pain, when I miscalculated -- and then I upped the dose quickly. We had enough painkiller in the house that I could've kept him completely asleep til the end, if necessary. So why am I opposed to legalized assisted suicide? Once a societal expectation is set up that a "death with dignity" means taking a bunch of pills and going out instantly, there will be pressure on the ill to "not put their families through all that" and not go on the journey through natural death with their families. The whole time I was having this incredibly powerful, loving experience of caring for my father (four months from diagnosis to the end), I was also dealing with crazed relatives who were calling me up and literally screaming at me that I was an idiot for taking care of him and that I should dump him in a nursing home and let professionals do everything, and that he was a selfish bastard for allowing me to do home hospice. It takes very little imagination to foresee a time when the same kind of relatives would be screaming at some other woman "Why is he being so selfish, letting you change his diapers?! Who the hell even does that, nowadays? Why doesn't he just take the damn pills, like a normal person?!" I don't want society to go down that road. It was hard enough, standing up to the pressure to wash my hands of responsibility for caring for my father. It would've been far more painful to have people yelling at me that he should just hurry up and die already -- and all the worse if some terminally ill people gave in to that kind of pressure and "just took the damn pills," which I think is exactly what would happen.

Unknown said...

I agree with Karen. I think that young, otherwise healthy people killing themselves before they get really sick sets a very bad precedence. If she were truly strong, she would face more of her life. Later, as the pain got too much or whatever, she could quietly pop her pills with her husband and mom at her side. But to do this so far in advance of any seeming signs of disability from cancer, to go so public as a political statement, it does seem like she wanted her 15 minutes of fame. (I feel sorry for her husband.) I hope that isn't being too harsh, but every cancer person I know (ESPECIALLY those currently suffering) want nothing so much as a cure, as a return to health. They are fighting with every fiber of their beings to survive, to endure, to live with grace as long as absolutely possible. They are fighting death so valiantly, this easy-out just seems a slap in their faces.

Unknown said...

Fantastic writing, you put into words all that was swirling about in my thoughts regarding Brittany.

I think what irks me the most is that she is pawn who believes herself in control. Of her image, of her destiny.

Because if she can't have her storybook perfect life than she will literally destroy it as swiftly as possible.

The whole PR story is woven together like a tragic fairytale.

And something wicked this way comes.

This public suicide can only bring about rash copycat suicides and much more pain.

I am afraid Brittany has gone through life sheltered until her diagnosis.

I am sorry to see so few people see through the ruse that this is somehow a brave and wise decision.

Living until the pain consumes her would be brave. And be a sad but more meaningful sharing wiht her family as she approaches the veil.

Instead this feels like a shallow end.

Thank you for fighting.