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Sunday, October 26, 2014

I Did Not Say it But I Did Think it.

I like to read various feminist websites. The range of views expressed is remarkable as are the topics of discussion. One website I often read is XO Jane. Two days ago XO Jane had the nerve to publish "Do We Care About Brittany Maynard's Right to Die Because She's Hot" by Beejoli Shah. Link: Here are a few juicy quotes:

Regardless of where you stand on assisted suicide, an issue as controversial as this deserves careful thought before being opined on, and one thing becomes glaringly obvious the more I read her story: We care about Brittany Maynard because Brittany Maynard is beautiful.

Look around at every news story recapping Maynard's journey. despite the copious amounts of video blogs and news interviews she's sat for recently--ones where you can see the toll terminal brain cancer has taken on her body, including slowness of movement and cancer related weight gain--many outlets choose to use old photos of Maynard, ones where she is laughing at her wedding or curled up with her husband on vacation, rather than ones that reflect how she looks now. In particular, People raised eyebrows among celeb weekly editorial newsrooms when they ran an air brushed and photoshopped picture of Maynard on their cover last week.

Shah reviews well know figures in assisted suicide and that came to public attention. Louise Schaefer, Peggy Battin, Barbara Mancini and more distantly in terms of time Jack Kevorkian. What makes Maynard different in Shah's opinion is "her narrative is better because she photographs better." 

Harsh words by Shah and I will merely point out that sometimes the truth hurts. I think Shah is spot on here. I have no interest in hurting Maynard. She has my sympathy as does her family. I wish them all the best at this difficult time. My point is that the sensationalism associated with her narrative is an indictment of American culture. Sensationalism has replaced a sober and serious discussion about how Americans will die.  Sensationalism generates ratings and sells news papers and magazines. What sensationalism does not do is help any human being, including Maynard, when they need to think about end of life choices.

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.

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.

Tuesday, October 7, 2014

Terminal Normativity Displayed by Ezekial Emanuel

Last month the Atlantic published an article by Ezekiel Emanuel. Aside from the provocative title, “Why I Hope to Die at 75", there is nothing original or particularly insightful in the article. Link: Emanuel wants to die at 75 for reasons that highlight a life of privilege. I have no idea why he wrote this essay. Perhaps he shares the views of his brother Rahm Emanuel, former White Chief of Staff, who in 2010 caused a controversy by referring to liberals as “fucking retarded”. What is very clear is that Emanuel cannot perceive life in a different body. Specifically a body that is not fit, white, and male. Emanuel believes as we age our bodies and mind deteriorate. He does not advocate for assisted suicide. He simply has no interest in living beyond 75 years of age. He considers his life complete at 75. His family thinks his desire to die at 75 is crazy. I disagree. He is not crazy. Rather he is a narrow minded bioethicist utterly incapable of creativity and imagination. He is a privileged white male that cannot imagine life without a body that functions typically. Emanuel is very sure about his position. Emanuel’s certainty reveals why I am ill at ease with the field of bioethics. The atypical body is not respected. Normativity rules the discipline. The thought we live in an ableist society is noted and summarily dismissed. Among the most objectionable passages the below took me aback:

 "But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic."

Clearly disability is bad. I am surprised to learn I am not creative. I am surprised to learn I cannot contribute at work or to society. I am surprised to learn my life has been devoid of vibrancy. I am surprised to learn my life has been one of deprivation. A few things do not surprise me. I am not surprised to a well-known bioethicist has such an overwhelmingly negative view of life with a disability and the aging process. I am not surprised that my life as a man with disability may or may not be worse than death. I am not surprised by the anti disability and ableist rhetoric. I am not surprised I am treated differently as a man with a disability. I know this because people, generally strangers, tell me they would rather be dead than use a wheelchair. 

For Emanuel, there is only one way of living, that is a life with typical physical ability and typical cognitive functioning. I would fail the test for fitness Emanuel refers to conducted by Eileen Crimmins. An assessment of physical functioning includes the ability to walk ¼ of a mile. I fail. Climb ten stairs. I fail. Stand or sit for two hours. Half a failure. Stand up. I fail. Bend and here I assume being bipedal is required. I fail. Kneel with out special equipment. I fail.  My failure is physical. Society’s failure is how disability is framed. Simply put, society demands normalcy. I reject this via a life time of adapting to a body that is atypical. Each and every physical deficit described by Emanuel as fit can easily be adapted to and, for lack of a better word, overcome.

Aging and disability are terrible. Emauel described his father in the following paragraph.

About a decade ago, just shy of his 77th birthday, he began having pain in his abdomen. Like every good doctor, he kept denying that it was anything important. But after three weeks with no improvement, he was persuaded to see his physician. He had in fact had a heart attack, which led to a cardiac catheterization and ultimately a bypass. Since then, he has not been the same. Once the prototype of a hyperactive Emanuel, suddenly his walking, his talking, his humor got slower. Today he can swim, read the newspaper, needle his kids on the phone, and still live with my mother in their own house. But everything seems sluggish. Although he didn’t die from the heart attack, no one would say he is living a vibrant life. When he discussed it with me, my father said, “I have slowed down tremendously. That is a fact. I no longer make rounds at the hospital or teach.” Despite this, he also said he was happy.

I shudder to think of how Emanuel would describe me. His father and I are delusional. Amazing. How can a man so well educated utterly fail to grasp that elderly and disabled people are happy with life? Does being sluggish or slow really matter? To a degree the answer is yes in terms of time. It takes me longer to perform typical activities—my activities of daily living in rehab speak. So what. Let’s think out of the box for a second. Could my life or that of an elderly person be brought up to speed. You bet! How about personal and family support networks? How about community supports? All have been demonstrated to enhance the life of elderly and disabled people. The problem is not with the body but the lack of a socially constructed environment that is accessible to people that use adaptive technology such as wheelchairs. The elderly Emauel states “are likely to be more incapacitated. Does that sound desirable? Not to me.” Emanuel goes on to state:

Our expectations shrink. Aware of our diminishing capacities, we choose ever more restricted activities and projects, to ensure we can fulfill them. Indeed, this constriction happens almost imperceptibly. Over time, and without our conscious choice, we transform our lives. We don’t notice that we are aspiring to and doing less and less. And so we remain content, but the canvas is now tiny. The American immortal, once a vital figure in his or her profession and community, is happy to cultivate avocational interests, to take up bird watching, bicycle riding, pottery, and the like. And then, as walking becomes harder and the pain of arthritis limits the fingers’ mobility, life comes to center around sitting in the den reading or listening to books on tape and doing crossword puzzles.

Emanuel cannot imagine bodily difference.  He observes diminishing capacities.  Like many, he observes what people cannot do. In contrast, I see a world of possibilities and the ability of the human body to adapt. I value the interconnectedness that disability in the broadest sense of the term creates and makes obvious. I value the elderly and their “sluggish” bodies. I admire a myriad of adaptive devices that empower people. I admire the wild creativity of the other--in this case those who are elderly or disabled or both. Toward the end of the article Emanuel suggests his views will be condemned.  In an effort to be clear he states:

I am not saying that those who want to live as long as possible are unethical or wrong. I am certainly not scorning or dismissing people who want to live on despite their physical and mental limitations. I’m not even trying to convince anyone I’m right. Indeed, I often advise people in this age group on how to get the best medical care available in the United States for their ailments. That is their choice, and I want to support them.
And I am not advocating 75 as the official statistic of a complete, good life in order to save resources, ration health care, or address public-policy issues arising from the increases in life expectancy. What I am trying to do is delineate my views for a good life and make my friends and others think about how they want to live as they grow older. I want them to think of an alternative to succumbing to that slow constriction of activities and aspirations imperceptibly imposed by aging.

Emanuel ignores the power of his words. We do not live in a social vacuum nor is our decision making process free of outside influences. Emanuel is correct in that no one openly scorns a person like me or an elderly person. Instead we kill them with kindness and maintain their life on the precipice of disaster. As Mary Johnson wrote in Make Them Go Away: Clint Eastwood, Christopher Reeve, & the Case Against Disability Rights, no one wakes up thinking I am going to discriminate against the disabled. We good hearted people and care about the handicapped and elderly! Sorry but no.  Society does not value our existence.  The backlash I experience when I assert my civil rights or when people who are elderly demand to be treated equally is about fear. Emanuel’s article to me is about fear as well. People fear aging and the end of life. In response to that fear end of life has morphed into a right to die. This is what happens when the normate to use Rose Marie Garland Thomsen’s awkward word, dictate and set the terms of the debate about aging and disability.  Disability becomes the ultimate fear—a fate worse than death. Based on my life as a paralyzed man for the last 38 years I can assure others there is nothing to fear. Disability is not necessarily bad and aging is merely a biological inevitability.  All who are born will die. This is a given. It is the way we adapt to life that is most important. All people when given the chance have something to contribute.

Tuesday, September 30, 2014

Cripple Identity: It's the Freaks that Matter

I have addressed the issue of identity multiple times on my blog. Last night as I watched a ragged pre season NY Rangers hockey game my mind kept drifting to issues relating to identity. In part my thoughts were influenced by my honors class about disability and bioethics. Yesterday we spent most of the class discussing Harriett McBryde Johnson's novel Accidents of Nature. I use this book as a teaching tool. It is an easy read and a welcome break from dense articles usually assigned. Written for a teen audience, complex concepts are raised that I suspect change the way young people think about disability. Remember kids, unlike many adults, are open minded.  McBryde Johnson sets the perfect tone. The two main characters are perfect foils--Sara the opinionated sarcastic bad cripple and Jean the good girl and compliant cripple.  The novel is largely about "Crip Camp" and how Jean changes as a result of being around other people with a disability for the first time in her life. In a mere 10 days Jean is exposed to a community she did not know existed. Community here is not quite accurate. Jean was exposed to disability culture. Such exposure for the un initiated is often shocking. Reading this book sparked many memories of my first encounter with people with a disability. I was 18 years old and weighed under 100 pounds. I was medically stable for the first time in a decade. I was naive in the extreme and recently paralyzed. Obviously I met other people in rehab who had a dizzy array of disabilities but one and all did not identify as crippled--that includes myself. No one used the word cripple or identity and disability as a civil rights issue was in its incipient development. By 1978 many laws had been passed that provided basic human rights to people with a  disability. Section 501was passed in 1973. IDEA was passed in 1975. The ADA did not exist but the ground swell of legislation was clearly designed to empower people with a disability. Along with millions of others I was a direct beneficiary of the law.

The legal fight for equal rights of people with a disability was being won but the social struggle for equality was and remains a glacially slow process. In looking back at my first exposure to a large number of people with a disability in college I was taken aback. I knew I was different. I knew using a wheelchair resulted in a stigmatized identity. I hated this. I did not hate my body. I was learning and the most important part of my education did not take place in the class room. In four years of college I learned more about my body than I ever did in rehabilitation. Rehabilitation professionals were clueless and the field remains deeply problematic to this day. When I showed up at college other people with a disability, hard ass survivors, were kind to me. They taught me the life lessons that have enabled me to not only survive but thrive. By thrive, I mean live a typical life. And part of that life now revolves around disability as an identity.  McBryde Johnson gets to the heart of identity in her novel. As was the norm at the time, she went to segregated schools for disabled children. Education in these "special" schools was typically inferior to a public or private school for typical children. There is obviously a large part of McBryde Johnson's life experience in both Jean and Sara. Some of the dialogue in the book is perfect.  In fact some passage remind me of children's book written in the 1920s and 1930s written by socialists designed to undermine accepted wisdom. For me,a few passages in the book leapt off the page. First, was a discussion of Marxism and how it helps explain the world and "all that shit". When questioned why this was important:

She [Sara] leans forward on her folded legs. "Mainly because I'm trying to figure it out, being crippled. Why are we the dregs? Why are we the outcasts? Because we deserve it? I don't think so. It's because of injustice. It's a failure of capitalism. Capitalism wants individualism, self-reliance, competition. If you can't compete, you starve. None of those things work for us. 
I shouldn't encourage her, but I'm a little curious. "Are you say-ing we can nev-er fit in?" "Not truly. But in not fitting in, we're like the vast majority of people under capitalism. They don't fit in, but they don't know it. Marx talked about the alienating power of capitalism, which means most people become misfits, foreigners in their own countries. We try to fit in; we think we can fit in by imitating those who control things, but its an illusion. False consciousness". 

The hard part of the disability experience and aging has been the realization I will never fit in. I will never be perceived by others, typical others, as ordinary. My very existence will forever generate hostile, awkward, and at times strange reactions. This bothers me. It bothered me in 1978. It bothers me today. A large part of me does not get it.  I use a wheelchair and cannot walk. Get over it people. This is why via the written word I mock the bipedal hordes that surround me. McBryde Johnson got this. She wrote:

walking is something you can mock. Not walking as an ordinary means of getting around, but Walking as a big dramatic idea. Walking is a metaphor for striving of all kinds. When I gave up my childhood struggle to walk, it felt like a failure of something much greater--a failure of courage, of character, of faith. Yesterday Sara suggested that walking might be a matter of choice. Today it's a joke. A joke so funny I can' stop laughing. 

The social value placed on walking boggles my mind. It is indeed laughable. Of course I know the human body from an evolutionary perspective is designed to be bipedal. I also get the inability to ambulate causes secondary complications such as poor circulation. I get that paralyzed people such as myself are at a higher risk for digestive and urinary issues. Skin care must be diligent. All this can be managed. In fact I see no difference between the way I successfully manage my body than others who are bipedal. Bipedal people bodily management is not that different. High cholesterol is common as is diabetes and a host of other supposedly ordinary health issues.  The real problem is not within the body but rather to the social response to the atypical body. If I walked into a health care setting as a white, middle aged man I would be treated with a modicum of respect. Because I do not walk in the door and have an obvious disability the social response is often negative. I have plenty of horror stories but I am essentially profiled as a problem and perhaps extra labor for staff. The real issue is that I am and remain a symbolic failure. I represent the limits of medical science. Bigotry sent my way is seen as acceptable--worse the bigotry is not even acknowledged as such. Thus I read a tweet the other day "nothing sadder than a hot girl in a wheelchair". People, typical people, were stunned when the reaction was fierce and hostile. In much the same way when I vigorously express my opposition to growth attenuation or utilitarian theory I am supposed to contentedly overlook the fact my existence is subject to a good natured philosophical discussion.  Sorry but no. My life has value. I am a human being even though others might not think so. Paging Peter Singer! McBryde Johnson gets my rage. She uses a controlled fury in a way that is highly effective. A character in her book, a veteran of "crip camp" states:

"Come on Sara," Willie says gently, "you and I have been coming here a long time.  We know its nuts.  It's always been nuts. It'll always be nuts. We can't expect it to be sensible. It's a camp for Freaks; we know the Norms that run it don't have a ghost of an idea what they're doing. But they don't matter. The Freaks are what matter. You know that. We share something here. Even though it's nuts, it ours. Am I making sense?"

This makes perfect sense to me. It makes perfect sense to my fellow activists in ADAPT and Not Dead Yet. It makes sense to those working in disability rights. It makes sense to all people with a  disability that have taken the time to stop and think about the skewed reactions their presence creates. It makes sense to many of my colleagues in bioethics (though certainly not all).  It had better make sense to every scholar working in disability studies. I think those that truly get life as a crippled person and who identify as such need to let their freak fly. Embrace difference. Embrace the atypical body. As I get older I am increasingly inclined to say fuck em and embrace life as I know it. Social slights do not broil my guts as much as they once did. When I get stared at I stare back. When required I am polite but can be confrontational. As I age, I think I am trying to embrace my inner Kurt Vonnegut. Vonnegut was and remained until the day her died defiant. His many fine books, especially Slaughterhouse Five, revealed the power of human imagination, creativity, and ability to adapt. I accept all others as valued humans beings--capable human beings. I wonder when confronted with any body, typical or atypical, what can that person do. I guess this makes me a radical. Not a pleasant thought.