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Monday, August 29, 2016

The Catholic Church, Do Gooders and Religion

This morning I read "This is what it Feels Like to be Prayed for Because of My Disability" by Carly Findlay. Link: Many people have prayed for my poor crippled soul. I have had many mentally ill and homeless men follow me and oddly pray for my rotten soul. Once I had a man follow me for many blocks down 5th avenue in Manhattan screaming at me that I was the anti-Christ. I have been told repeatedly that I am paying for grievous sins my parents committed. My miserable existence is God's punishment to hurt my parents. Little old ladies sitting in wheelchairs come up to me in church and tell me they are praying for me and that I should not worry. "God will cure you. You you will walk again". I could go on at great length about a myriad of ways good Christians have verbally abused me. What I have learned is to avoid entering any Catholic Church and more generally any church remotely associated with Christianity. Church goers love to pray for my soul. They do so under the assumption I am suffering and that my existence on earth is inherently less. I am at my very core a sinner. Perhaps I am possessed by the devil. What I am not is truly human. I am not part of a minority group. The Church makes this very clear when it lobbies that it is exempt from the ADA and is under no obligation to make Churches and Catholic Schools accessible. 

Horrific stories of abuse exist. I am harassed every time I enter a Church. I am not harassed often. I am harassed every single time. I know with 100% certainty someone will say something grossly demeaning. I am far from alone. Sarah Perkins wrote:

In 5th grade I switched schools, to a Catholic school, and it all went downhill from there (to put in very nicely). It didn’t take me very long to figure out that if this was how Catholics acted I wanted no part of it. In fact I went the extra mile and decided there was no God; because if God was in any way like anyone in my school I wanted none of that either. Catholic schooling made me an atheist. I’m sure I’m not the only member of this group. Link:

From Human Disability and the Service of God:

Mom told me that Aunt Lou confronted her after delivery asking her if I was my daddy's. "Did you sleep with someone else? Why else would she be blind? God probably made her blind so she didn't have to look at your sin while she was in the womb. Page 220

From the Disability Rag:

I remember a fragile, frightened looking 20-year old who told me that her grandmother had proclaimed her possessed by the devil. Took her to an exorcist. Her voice and hands trembled. She went on to say that her seizures had continued. Then grandmother said take her away--PUT HER AWAY. 1994, page 24-25.

Back to Human Disability and the Service of God:

I know for a fact that the Bible has all kinds of stuff about people with disabilities being helpless and pitiful. Just turn on the TV some night and watch those guys, preaching and telling all the people in wheelchairs to come forward and be healed. You think that helps us gain people's respect for what we can do? Page 221

Christian churches of all types talk a good game when it comes to people with a disability. The Vatican has been churning out papers on disability for decades. The current Pope loves people with a disability. Last June there was a large conference on disability at the Vatican. Link: Oh how Christians care. It gets better. Our current Pope loves to kiss and bless the crippled. People gush in awe when the Pope stops to kiss the crippled. This is front page news.

This does not help. This empowers those who consider themselves Christians to dehumanize people with a disability. We cripples are not truly human but an opportunity. For some Do Gooders we are a means to an end. Our miserable existence can be used to make them feel better and beneficent to the less fortunate. This plays out in a myriad of ways. For Carly Findlay, she was followed (stalked) by a stranger and prayed over. Yes, she was followed by an absolute stranger who wanted to pray for her. I have had this happen to me.  Just last year I was in a diner and two men got on their knees and prayed for my rotten soul. The question is what can you do? Findlay wrote:

I could have spoken up and said its not ok. I could have refused. I could have told her strangers praying for me offends me, but this would have made a scene. I could have said I don't believe.
But I remained polite because I was shocked to be followed, and a polite response following "kind" acts like prayers is what's expected of me.
It can be hard to know what to say. I think, even if we do believe in God (or whoever), or demonstrate good values and politeness most of the time, it can also be hard to answer assertively. "No thanks" is what I can muster up but in hindsight I really want to tell them what I feel - that it makes me feel othered, lesser and pitiful. I wish I could drop my guard of politeness to say "fuck off". They've got no idea what my life is like just by seeing me in the street.
Unwanted prayers from strangers are not helpful. They imply I'm less than others, that Jesus loves me even if no one else does, and are self serving - making the pray-er feel good about themselves. They say I've committed a sin and need forgiveness. They put me (and others) on the spot because there's an expectation I'll be nice in response to their kindness.

Being polite in the face of such supposedly good will is the wise response. Saying "fuck off" carries risk. I know because I have had Christian do gooders go from beneficent to hostile in seconds. The man holding the door open for you with a big smile can turn instantly hostile when one politely states no thank you. More than once this beneficence that turned to fury replete with doors slammed in my face with great ferocity. 

In my lifetime I have seen no substantial change in terms of how Christian do gooders react to my presence. I have learned to avoid going to Church--any church. I consider myself a recovering Catholic akin to a recovering alcoholic but we cripples have no AA meetings to attend. When speaking to a very close friends recently I was on my morale high horse and stated "All Christians are bad". My friend cried. I felt bad. then and I feel bad now. Such absolutes are simplistic and wrong. Not all Christian are bad. I will never utter those words again. Christian is used here as a garbage can term. Let me clarify the point I am making. Two kinds of help exist. 1. Imposed help by do gooders who may or may not be Christian. When do gooders ask if I need help it is not a question. The offer for help is a declarative statement. If I refuse "help" the response is swift and nasty. I have declined them the opportunity of feeling good about themselves. This "help" is based on the assumption my existence is miserable when compared to the do gooder. 2. Common courtesy. People who ask if help is needed that is indeed a question. May I help you? Help might be welcomed. The suggestion of help is exactly that--a suggestion or offer of assistance. In the second example of help use a healthy dose of common sense--and yes I know common sense is in short supply.

What has not changed among Christians do gooders is the belief that sin is inherently tied to bodily pathology. Here any body that is outside a wide norm is a threat. We cripples who merely want to go about our day are failing our godly duty. In the gospels of Luke and Matthew they want the blind to see, the lame to walk, and the deaf to hear. We cripples have a place within the Christian realm. We exist to inspire, fear, and await the miracle cure. We are a wrinkle in the system. Not fully human and yet our existence is tolerated and used as a parable about life and its anticipated trajectory. We are a riddle. We are used as an allegory or in proverbs. The truth can be found in parables, riddles, and allegories. Sorry but we cripples have no answers. We are as flawed as the hordes of bipeds that surround us. Worse yet we are not meek and clearly will not inherent the earth. I do believe we cripples are righteous though. I do believe the blind can lead each other. I do believe disability rights are human rights. I am even capable of forgiving the do gooders I despise. Before Luke famously asked "Can the blind lead the blind? it was written:

Judge not, and you shall not be judged. Condemn not, and you shall not be condemned. Forgive, and you shall be forgiven. Give, and it will be given to you: good measure, pressed down, shaken together, and running over will be put into your bosom. For with the same measure that you use, it will be measured back to you. 

I pray do gooders will read the words above and take them to heart.I know I have.

Thursday, August 25, 2016

Soylent Green and Assisted Suicide as a A Life Style

About ten days ago I wrote about Betsy Davis who ended her life and in so doing created an elaborate "Rebirth Ceremony". Link: She was among the first people to use California'a euphemistically titled End of Life Option Act. Let's drop the pretense and describe the law as is: assisted suicide legislation. A few days ago an online magazine I read, Vox, published a "Rebirth Ceremony" party goers personal account of the party. As you would expect, I was appalled and taken aback that Vox published the story. Link: The long essay gushes over how sad and wonderful the ceremony was. It is replete with a description of a fashion show in which party goers try on Betsey's clothes. Yes, the author apparently fell in love with a vibrant red Donna Karen wrap dress that was difficult to figure out how to wear. Here is the dress in question gayly worn by the author

Betsy you see has ALS and is terminally ill. Clearly, she could never enjoy wearing such a "frock". I breathlessly read that "Betsy groans in frustration. She's unable to talk because she is in the final stages of ALS, a neurodegenerative disease that is slowly depriving her of the power to move, speak, eat and breathe. Like many of the 30 party goers who flew in for the "Rebirth Ceremony" I am supposed to be impressed with the shindig. Many details are included. A random sampling:

It hadn't occurred to me that assisted suicide could be wrong, because it was clearly what Betsy wanted.

My friends and I rented a house in Ojai, close to Betsy's, for the weekend. We understood our job was to have as much fun as possible.

From 5 to 7pm we would drink cocktails while picking out Betsy souvineers from her remaining belongings--everything must go.

One friend brought balloons altered to read "Happy Re-Birthday". Betsy's photographer friend documented everything like a wedding. 

A Tesla Model X with Falcon wing doors was at the ready to transport her to the ceremony site. 

We were instructed to walk up a hill to a vista where white shade tents, a massage table, and an alter stood before white folding chairs--once again like a wedding. She was lifted into the Tesla X, laughing with joy as the Falcon doors closed, radiant in her blue and white robe. Despite our collective concern, we cheered her on as she was wheeled into the ceremony site. Lots of hooting and hollering, as if she'd just kissed the bride. 

The above reads like something on page 6 of the New York Post tabloid wedding section in which two movie stars get married. This is not a spoof. This is very real. All week I have been thinking this is akin to a science fiction novel. Surely a person with wealth and power and the ability to have 30 people fly from across the nation might have put some energy into a little thing called life. Perhaps she did. I have no idea. A few things are a given in this story. ALS is certainly a fatal condition. Those who are terminally ill will die for certain. They will acquire an unwanted and horrific disability. Living connected to machines is a fate worse than death. Those unidentified machines are most likely a feeding tube and ventilator often referred to as life support. The focus here is on the drama of death. As I wrote ten days ago assisted suicide has become a life style.

I have thought long and hard about the classic 1973 science fiction movie Soylent Green. It starred young and old actors alike--Edward G. Robinson, Chuck Conners, Charlston Heston and others. The film was set in 2022 New York City. The population of earth experienced run away growth and New York City had 40 million residents. The city was encased in yellow haze of pollution. The worlds natural resources were depleted and people lived in filth.  Heat waves were rampant and tormented the population. Poverty was wide spread world wide. Corporations replaced ineffective governments and corporations ran all social services. The Soylent Corporation provided meager amounts of food in the form of wafers of "Soylent Yellow" and "Soylent Red". In 2022 a new product is released--"Soylent Green". It was made from ocean plankton. Real food had long since been forgotten. Only the fabulously wealthy ate precious commodities like vegetables and meat. Water too was in short supply. Riots took place frequently. For those that remember the film, this dystopic setting was perfectly imagined. Spoiler alert for those that do not recall the film. The most famous scene in the film is Charleston Heston yelling in agony that "Soylent Green is made of people" as he is carried away. I recall a different scene. I remember Edward G. Robinson known as Sol or "Book". For Soylent Green is made of people--people who seek out assisted suicide. It is a culture of death not life. And please do not misinterpret those words. They are rational and devoid of any religious connotations.

I cannot fathom how we as a society ignore rampant ableism and embrace death as a life style choice. This is not science fiction but reality. I know when I enter my class, Bioethics and Disability, next week every student will be in favor of assisted suicide. That is the norm these days. Assisted suicide has become a given. I suppose assisted suicide reflects the American penchant for valuing independence and control. Both are defined in the narrowest sense of the term. If you can't get out of bed independently, dress yourself, and perform the usual activities of daily living your life is inherently inferior if not worthless. This cursory line of reasoning falls flat for me. In reality ableism knows know bounds. It is a lethal ism. Lives are at stake and that includes mine and millions of others. This reality keeps me up and I am reminded of the bellow scene in Soylent Green.

Wednesday, August 24, 2016

Another Letter to Young Cripples

I am disappointed in young cripples. They are not like me. This is good and bad. The good is that thanks to broad based advances in medical technology they will not suffer like I did. Pain and disability go hand in hand but not to the degree it once did. I experienced three massive spinal surgeries, spent more than a year in a body cast and for the first four months post surgery I was strictly for bidden from getting out. I estimate I had at least 20 spinal taps over the course of ten years—age 9 to 18.  I experienced pain so severe that I remain haunted by the memories. To this day, I have nightmares about pain I experienced. However, thanks to brilliant parenting and compassionate care from a host of people, I escaped ten years largely intact.

It brings me great joy to know the first post ADA did not live on wards of 16 morbidly ill children. I am thrilled sick children today are able to have their parents at their side and provide much care both physical and emotional. My spirit soars on the rare occasion I get to see a neurological pediatric ward. Kids who have severe neurological conditions have it easy in comparison to the past. For this I am eternally grateful. My experience is firmly part of medical history.

While I left the Catholic Church long ago, the Catholic Church has not left me.  I joke that like a recovering alcoholic I am a recovering Catholic. As a philosophy of life there is much to admire about being Catholic. Think the Our Father or my mother’s favorite the Hail Mary. The cadence and words of the Apostle’s Creed is burned deeply in my brain.  Forget the organization known as the monolithic Catholic Church.  The men and women in the business of running the entity known as the Church—Cardinals, Bishops, the Pope and Vatican officials—are flawed and many are the epitomy of evil. Here I refer to the Catholic Church protecting priests that molested an untold number of boys. For this I can find no forgiveness.

Amidst all the pain and suffering I learned how to endure. We endure in a myriad of ways. I endured great pain. I endured months in the hospital. I endured wearing a brace for years. I endured body casts. I developed a dangerously high threshold for pain.  I endured a decade in and out of the hospital when things we take for granted did not exist. MRI, CAT scans, imaging technology that makes my knees buckle in awe. This is great. Yet we have missed something. All my suffering and my ability to endure made me mentally tough. My parents made sure of that. I was held to the same standard as my typical siblings. I was never special. And I mean never. I was not special at school or at home. I was not special at the hospital. I was not special when we went to Church on Sunday and we always went to Church. My parents, children of the Depression and dysfunctional families, were as reliable and hard working as a machine—a machine that never broke, never shut off and worked like clock work 24/7. I remain in awe of my parent’s balance and love freely and generously given. They never acted out of character. They never got drunk. They did not curse. They were never mean. They did not raise their voice in anger—they never raised their voice.

I am who I am because of my parent’s ability to parent me at the worst of times. They regularly got calls in the middle of the night about my physical condition. They knew I was close to death far too many times that I want to recall. They knew I was in pain. This created something beyond the typical mother/father child relationship. At the core of that relationship was the dichotomy between pain and joy. When I went to brace clinic for year after year it was a pressure packed affair.  Every morning I checked my Babinski. A positive Babinski meant I would shortly be in the hospital and in great pain. A positive Babinski meant an immediate drive to NYC. An increase in the curve of my spine meant surgery. At the time, mid-1970s scoliosis was experimental surgery. What is to be done? Spinal fusion or Herrington rods? My parents chose widely—spinal fusion.

The joy my parents made sure to bestow upon me were small. They were also critically important. Every brace clinic visit appointment was followed by what my father called “dirty water hot dogs”. I loved hot dogs. I still do. After brace clinic we ate hot dogs on 168th street and my mother and I went to the Cloisters on our way home. For each and every time I suffered, my parents made sure I experienced some degree of happiness. Mostly they gave me a good experience. My father would let me into their bedroom and closed the door. He would take off his business suit and show me how to fold it and place it in his walk in closet filled with suits. He would have a drink and smoke a cigar. I could drink a coke, a rare event. I felt like I was going to the inner sanctum of masculinity.  I felt loved and safe. Pain ebbed away. I felt peace and love.

Crippled children do not experience what I did. They suffer differently. They are not in the hospital as long as I was. Again, great, suffering is never good. But the suffering I experienced taught me many life lessons.  Without my parents stapled to my side, as is the norm in hospitals today, I learned how to take care of myself. I learned how to advocate for my health care and well being. I had powerful adults behind me willing to break any and all hospital rules. My job was to get better whatever that meant. What better was ranged wildly. Better sometimes meant living through the night. Better sometimes meant enduring severe pain that caused me to silently sob for hours on end. Thunderbolts of pain shot up my legs like an assault rifle firing away endlessly. Pain meant spasms so severe my skin turned read. I spiked fevers to 106.8 with my body violently shaking and my teeth chattering. Pain meant being taken from my home in an ambulance in septic shock with no discernable blood pressure and a weak and thready pulse.

I take no joy in suffering. I tell others I was an old man at 10 years old. I was a stoic and did as I was told. I did not complain. This by itself taught me so much about life. I was surrounded by people who cared for me. In the absence of medical technology, what I recall the most was the kindness so many expressed. I wonder where that kindness and compassion have gone. In the 26 years that have followed the passage of the ADA the civil rights of people with a disability are violated on a daily basis. A system exists with regard to disability. I have inalienable human rights and it is against the law to discriminate against people with any sort of disability. This is wonderful but does nothing to undermine the deeply ingrained ableism built into every component of American life. In order to protect and advocate for their disabled children the current generation of cripples has been coddled. They do not have the edge I do. They do not have the ever-present wariness of ableists. Ableists are visible and invisible. Some hide amongst us. The ableist bigots are easy to spot. It is the closet ableists that the post ADA generation does not sense. Contemporary cripples know they are despised. We are not welcome. We are an unsightly lot, a problem typical others do not want to think about. We who are blind, deaf, paralyzed and all those whose bodies are far from typical represent just how fragile human life is.  Difference is to be feared.  This has not changed one iota in the last thirty years. We are animals, highly social animals that are wired for fear or flight. Post ADA and pre ADA cripples know our presence is never routine or welcome.  Kuusisto has written:

You must feel they abhor you, that they’d wrap you in old newspaper and throw you out with yesterday’s fish if they thought they could get away with it. Insult to injury: they often “do” get away with it, tasering autistics, denying access to medical help, defying civil rights laws as a prima facie position—“let the cripple sue us—it will take him years—and in the meantime we can put up (insert structure or software system here) without the thin extra dime accessibility would have cost us. Ableism is knee-jerk and wholly consistent.

What has changed is the reaction to the presence of crippled people. Rather than routine and flagrant discrimination our civil rights are ground down by an evolutionary process. One example should suffice. It was a life altering moment and is a story I never tire of telling. After ten years of being medically fragile, in my last year of high school I became physically stable. This stability came at a cost. I was paralyzed, weak, insecure and had no idea how to navigate the world in my clunky poorly designed Everest and Jennings wheelchair. I knew I was being treated differently. Everywhere I went I heard people whispering behind me. Many people did not whisper—they flat out stared, pointed at me, and joked only I could go from the kid that was always sick to the kid that is crippled. Paraplegic and quadriplegic jokes ensued. My peers thought my presence was hysterical and I was the butt of never ending “humor”. I knew my social status could not be lower. I withdrew. One day however I was feeling sorry for myself. Upon returning home I told my mother that there was no handicapped parking space at school. The tone was clearly woe is me. My mother would not tolerate whining. She told me to drive to school the next day and park in the principal’s spot. If he had a problem with that he should call home. I did exactly what my mother told me to do.  In first period the principal himself showed up in my class. “Who is William J. Peace and why is his car in my parking space”. You could have heard a pin drop. I was escorted by the principal to his office. I felt like I was going to the gallows. But then I thought screw him. I did exactly what my mother suggested. I told him there are no handicapped parking spaces. It was hard to go from the student lot to the only wheelchair accessible entrance. He listened and shortly after we entered his office my mother arrived. She gave the man a withering look, her eyes ablaze. Nothing is more frightening than a mother defending her child. She suggested I leave the office and go back to class so she and the principal could have a talk. I pitied the poor man.  The next day when I drove to school handicapped parking had replaced the principal’s spot. Overnight I had gone from the crippled kid to the guy who had gotten his own parking spot next to the entrance door.

Fast forward to today. What would happen if I followed the same course of action my mother suggested? I would likely have violated school policy. That policy was long and had to be signed at the start of every school year by students and parents alike. I would have been reprimanded by my teacher and surely the principal for violating school policy. A meeting would be scheduled the following week with the guidance counselor, my homeroom teacher, parents, principal and myself. I would be reprimanded for violating the student code of conduct. The lack of handicapped parking places in the student lot would be addressed. At the conclusion of the meeting a committee would be formed to investigate the need for handicapped parking. A month later the assistant principal, teacher representative, legal counsel, and facilities engineer would meet. Another month would go by before a full report was sent to the principal. The committee would likely suggest there is a need for handicapped parking but the matters involved are complex. The legal representative would be concerned about the liability issue handicapped parking presents for “special students”. The guidance councilor is concerned about how “special needs students” will be perceived by other students. The principal would then meet with the original committee and he has concerns that this is a highly specialized issue and thinks the mater must be discussed with the board of education. Another month passes or maybe more. Handicapped parking is placed on the school board agenda. The agenda is full and the board runs out of time to discuss the matter. Another month goes by and the board of education discusses the mater. All agree handicapped parking needs to be addressed. Again, anything dealing with “special needs” and “special students” is a complex matter and has significant liability issues. The board of education believes an independent outside company must be consulted. Three months later the board of education reviews three outside consultant cost estimates and selects the lowest bidder given the fact handicapped parking is not a high priority. Four months later the outside consultant requests to present the findings to the board. The board of education agrees handicapped parking is needed. However the board is concerned about the cost of such a project. The board suggests the state be contacted because the cost is significant given the small nature of the need. Perhaps state funding is available. Yet another month passes awaiting word from the state.  The state finally emails the principal. No state funds are available. However, given the fact the ADA is enforced by the Department of Justice, a federal agency, perhaps federal funds are available. Legal council for the school writes to the DOJ. Six months pass and the DOJ reports there are no funds available to the state. At this point a year has passed. As a senior, I am about to graduate. I go off to college. Unbeknownst to me or my parents, following my graduation the issue of handicapped parking was discussed again at the board of education. A parent pointed out the only student with a disability had graduated. Budgets are very tight and the parent wonders why are we spending so much on handicapped parking when there is not a single handicapped student using a wheelchair that needs such a spot.  Many attending nod in agreement. Handicapped parking is shelved until there is a demonstrated need for such a spot or spots.

Absent in the absurdity above is the voice of any person with a disability.  It is all too easy for me to critique the first post ADA generation. They have had a radically different experience in terms of ableist bias.  The discrimination people with a disability experience today is rarely as severe or blatant as what I was confronted with. Contemporary cripples don’t know the history of their people. Few if any secondary schools devote time to the ADA. It was not part of my son’s secondary curriculum growing up. Indeed, when he equated disability rights with civil rights when learning about the great civil rights movement he was repeatedly told disability rights were different.  The first generation of post ADA cripples have escaped what I and many others with a disability experienced. They roll on campus and have no clue that I and others with a disability were not legally entitled to an education until 1975. I was 15 years old. They have no idea I was spit on for having the audacity to force my way onto a NYC bus. They have no idea Madison Square Garden and Yankee stadium were not accessible and openly hostile to people who used a wheelchair. The last time I was in Yankee stadium I was taken outside in handcuffs. I knocked over a very expensive TV camera because it had replaced handicapped seating. I was told by an usher to watch the game in a bar. People like me I was told repeatedly had no place being present. At Madison Square Garden after a Ranger game I was in the lift leaving after having been subject to harassment all game when a man urinated into the lift. When he and his friends realized what he had done they laughed loudly.

When I went to college in 1978 I did not expect to be treated with respect.  I assumed my presence was unwanted. I knew this as my first roommate walked in the door, looked at me and said I am not rooming with a cripple and walked out.  It did not take me long to figure out I needed to excel. I knew a typical job was unlikely to happen. Education was the key and my hope for the future. Excel I did. I did not want to be a good student I wanted to be the best student. I wanted to crush my peers. I wanted to crush them because I knew ableist bigots abounded. They abounded in 1978 and they abound now. Robert Murphy told me on the first day of graduate school at Columbia that I had to be a star for if not no other student using a wheelchair would be accepted for a decade or more. I loved this. I was a bull and a red flag had just been put in front of me. Excel I did. I graduated with distinction and an Ivy League PhD.  These experiences created a drive I do not see in the post ADA generation. They get upset about things I would consider of little consequence. The bus driver with a shitty attitude about tying down a wheelchair. This is a far cry from what the Gang of 19 experienced in Denver or what I put up with as part of the EPVA bus buddy program. Bus drivers were not just hostile but purposely broke wheelchair lifts and the passengers expressed open animosity. I feared for my safety many times. I was not sure who was more frightening—the drivers or my fellow passengers.

This history is simply not taught. Given this how can I expect the first ADA generation to know and value their rights?  They have no clue about the thousands of badass cripples who put their bodies on the line in order to pass dozens of laws far less known than the ADA. Some may know about the Capital Crawl, a pivotal moment for sure. I implore the post ADA generation, crippled boomers if you will, to read about our past. Read Robert Murphy’s The Body Silent, the first known scholar to seriously address the social implications of disability.  Murphy taught me to channel my rage using my intellectual abilities. Read John Hockenberry’s memoir Moving Violations and learn about the drive it took to make a career at NPR. Read  Mark O’Brian’s How I Became a Human Being. O’Brian was one of the rolling quads along with the beloved Ed Roberts who made universities nation wide accept students with a disability. Read Connie Panzarino’s The Me in the Mirror and be thrilled with how she forged a powerful life. Read Leonard Kriegel’s Flying Solo. Kriegal is filled with anger and how he reimagined masculinity with his searing words that are laced with testosterone. These men and women are not to be messed with.  Deaf people talk about deaf gain. Deaf gain is very real. Indeed, I am jealous of much of Deaf culture and their wonderfully beautiful language.  Deaf people are the ultimate bad asses. And this is exactly what the first generation of post ADA cripples are missing. They are not bad asses. They need to channel anger outward to those that knowingly oppress our people. Rage against social stigma. Rage against needless physical barriers. Rage when your civil rights are violated. Its okay, I promise. You will be amazed by what angry cripples can accomplish. Ed Roberts called this cripple power. 

Tuesday, August 16, 2016

Me Before You Promotes the Myth of Asexuality

Its been a while since the Me Before You protests were held. The film is thankfully no longer in theaters however its impact will live on. In the last week I have noted Me Before You is readily available for home viewing Who would buy this ableist trash is a mystery. By the same token, the idea of buying any film or paying for music now seems odd to me. Regardless, a few months ago I wrote the below post but was not happy with it and hence never put it up. I edited it today and think it is worth a read.

Sam Claflin who plays Will Trayner in Me Before You is by Hollywood standards a handsome man. His counterpart Emilia Clarke who plays Louisia is strikingly beautiful.  Tear jerkers and romantic comedies require leading characters that are exceptionally attractive. The various trailers show Will in a tuxedo and Louisa in a striking red dress and one clip of Louisia sitting on Will’s lap at a wedding party. When I see these images I laugh at Hollywood stereotypes that defy reality. As a paralyzed man many a fine looking woman have sat on my lap. However, any woman that sat on my lap with the sort of dress Louisa was wearing would be angry the second they got off my lap—their dress would be stained. In real life wheelchair use is messy and grime is simply part of life. The nitty gritty associated with wheelchair use ain’t pretty. This fact never entered into the mind of JoJo Moyes, the author of the book the film Me Before You is based on. The reason Moyes never thought about this is because she never bothered to conduct any research into what it is like to live life as a quadriplegic. She left that thought process to her ableist mind.

I have low expectations when it comes to romance novels. I have even lower expectations when it comes to romance movies. Emotional fluff does not appeal. Me Before You is such fluff with a twist. Will is a quadriplegic, handsome and fabulously wealthy. Will is also the stereotypical miserable, angry bitter man post spinal cord injury. Lou as she is known in the film is the opposite. Lou is terminally chipper and has a large smile in seemingly every scene. Lou dresses poorly and was born on the wrong side of the tracks. Her life and that of her family is an economic struggle.  But lordy be it’s a miracle! The radically different couple fall in love. Lou will save the day. She will single handedly convince Will that life is worth living. They will fall in love and all will live happily ever after.  Not so fast.  I am writing about a disability snuff film not your average romance film. This book and film are different. Will is killed. Will, once a man of action, goes to Dignitas, the Swiss assisted suicide facility to die. Oh the tragedy. Tears flow forth and female teenagers hearts are broken. They gush about how brave Will was, oh how so loving was his sacrifice. Able bodied audiences cried their proverbial hearts out this summer. I seethed in anger. 

Stop. Let’s back up. The characters fall in love. People who are in love have sex. Here we have a gorgeous couple. There must be some gratuitous nudity. If not an out right nude scene at least a memorable bikini or wet shirt with visible nipples should be in the film. This is standard Hollywood fodder. Sorry, but no. There must be at least one sex scene—chaste or not so chaste.  Nope. Not one moan, not one groan, not one look of wonder on Will’s face when he sees Lou naked for the first time.  Oh there is some banter about Lou’s magnificent breasts. There are supposedly touching scenes of Lou and Will falling in love. There are standard humorous scenes as well.  The sexual contact  between Will and Lou though is G rated. Think timid in the extreme. The only conclusion one can reach is not only can’t Will walk but he sure as hell can’t have sex. He says so himself.  He is a quadriplegic. He is a head atop a dead body. His life is a fate worse then death. s.e. Smith has noted:

We’re supposed to think it’s wild and a bit racy that a nondisabled person would find a wheelchair user attractive — and of course he’s very conventionally attractive, which is supposed to make him all the more pitiful, a powerful, beautiful man brought down by the horrors of disability. The message for audiences is that disabled people are objects to be viewed from afar and pitied,

I am among the first generation of paralyzed people to forcefully reject the stigma that stubbornly clings to disability. I reject the pity, stigma, and rampant ableist assumptions made about the quality of my life. This makes me a decidedly unpopular person. Worse yet, I have acknowledged my sexual identity. In powerfully rejecting worn out stereotypes I am subjected to intense societal backlash.  Last year I wrote an essay, “Head Nurses” that was censored by Northwestern University. The controversy surrounding my essay played out in a very public and heated manner.  Looking back a year later I have no doubt the reason my essay was controversial is that as a paralyzed man I refused to set aside my sexuality. In short, I undermined the myth that people with disabilities are asexual or unable to satisfy their sexual desires. 

I find Me Before You deeply objectionable because it perpetuates the myth people with disabilities are asexual.  Will and Lou never consummate their relationship. They don’t even come close.  Will is to the best of my knowledge the first strikingly handsome male lead in a romance film to be completely asexual.  This is troubling to me. Human sexuality forms a core part of our identity. Sexuality is an important part of the human experience. Moreover, men and women have reproductive rights and those rights include those with and without a disability. However, when disability enters into these essential discussions non-disabled people get uncomfortable.  Disability and sexuality remains taboo and by extension people with a disability are not considered to be parental material and worthy of love. These assumptions are of course wrong and Me Before You profoundly undermines the human rights that the ADA is designed to protect.

Me Before You is far from the only Hollywood film that badly mangles disability and sexuality. Films that leap to mind are Whose Life is it Anyway and Million Dollar Baby. Disability representation always seems to be used as a plot device to grease the skids of a miserable story. We all know anything and everything disability related is inherently bad. While people who use wheelchairs are far more likely to be depicted in film and television in recent years, Hollywood rarely hires disabled actors or actresses with a disability. The roles of people with a disability in film are awarded to non disabled people like Sam  Claflin.  Penny Pepper in the Guardian discussed noted this obvious bias:

Prevailing discussion on sexuality among disabled people tends to the broad and the satisfyingly contradictory – but there’s a strong disconnection between what we discuss and what fascinates the non-disabled. Even if the sense of taboo starts to lessen, we’re still left out of debates about sexual freedoms, and have been since the 60s. Instead our sex lives are discussed in terms of these “issues”: what it’s like to be non-disabled and have a disabled partner; what a disabled person might face if they want to have children. It’s even an “issue” if you want to go on a casual-sex rampage! Overwhelmingly, disabled people experience discrimination by way of barriers and negative attitudes. This is as true of sexual adventure as it is of everything else.

I do not have any issues with regard to my sexual identity or my sex life. I do have issues with the way in which non disabled others think about my sex life. I have had to confront this head on my entire life. I have been asked “can you have sex” continuously for 38 years. The question is not really a question but rather affirming that I am an asexual being. The assumption has never changed—I cannot have sex. Strangers have asked me this. People from every walk of life have asked me. What no typical others seem to get is that the question itself, can I can have sex, is dehumanizing. If I were not paralyzed the question would never be asked. But paralyzed I am.  Misrepresented I am as are all those with a disability. The battle for disability rights is far from over. Yes the law is on our side thanks to forty years of progressive legislation but the stigma closely associated with disability is reinforced by films like Me Like You. To return to Pepper:

we fight, on many levels, for our experiences to be recognised within the broader body of human experience, to have our views genuinely represented in all their forms, and expressed by our own creatives across all art and popular culture – and always with a favourite mantra from our activist movements: nothing about us, without us.

Please don’t tell me about the exceptions that exist. The Sessions was a good film but is far from the norm. Even the Sessions had serious flaws. The main character had to seek out a sexual surrogate and was a virgin. The not so unintended message was no woman could possibly be attracted to a man who is severely disabled. Think about it another way: how many characters on film and TV played by an actor or actress with a disability are portrayed as sexual beings? This omission has a real impact on lives lived. This thought prompts me to think way back to those awkward early years as a paralyzed man.  In 1978 I was a newly minted paralyzed guy. When I launched my adult life at college I was shy and eager to date. I was also eager to have sex. I quickly learned many women instantly dismissed me as a potential partner. This was difficult to accept and an ever present reminder I was in all ways less. I truly had a social disease as Robert Murphy would often quip. Then for a short period of time my dating life picked up. The anti Vietnam movie Coming Home with Jon Voight and Jane Fonda was released. One of the characters was a paralyzed man played by Voight.  I loved this movie in part because it was the only film in which a paralyzed man was portrayed as sexually active. Better yet, the character was sexually skilled and provided his female partner with sexual pleasure her able bodied husband did not provide. I was thrilled. Apparently my female college peers had similar thoughts.  Women that had once instantly dismissed me were having second thoughts.  That is the sort of power Hollywood has on popular culture. Don’t be fooled by those involved in making Me Before You. Movies play a central role in how we perceive others. The film is ableist propaganda and not about one man and his choice to die as Moyes maintains.  It is a film that perpetuates disability based prejudice. As such it is and will remain a disability snuff film. It is proof positive ableism kills. 

Sunday, August 14, 2016

Assisted Suicide: A life-style Choice

Death is in. Death by choice is a popular idea. Imminent death is a reason for celebration. Invitations are sent out. Let's party--but no tears please. Tears are not allowed. That is the only rule. Do not go home empty handed. Party goers are encouraged to take a souvenir from the soon to be deceased. This is not a parody. This is not some Saturday Night Live spoof. This is what assisted suicide legislation has led to. Countless news outlets are showing the happy face of Betsy Davis "rebirth" celebration. The pinnacle of the two day extravaganza was Davis death. She took a lethal prescription of morphine, pentobarbital and chloral hydrate prescribed by her physician. She had trouble obtaining the prescription. Outrageous! Big brother apparently watching physicians and pharmacists. Davis was an artist and one of her friends, a cinematographer, deemed her death as a "final performance". Davis death her friend gushed: "what Betsy did gave her the most beautiful death that any person could ever wish for... By taking charge, she turned her departure into a work of art". Here is photographic evidence, proof I am not writing a satire.

Various low brow news sources such as People and tabloids like the NY Post and others gushed about how beautiful Davis death was. Reputable news outlets were equally effusive. Davis was described as the text book case for assisted suicide. Davis has been diagnosed with ALS and was very clear she did not want to be entombed in her body dependent upon breathing machines. Davis spent months planning her party and had the full support of her family, physician, and friends.

We have arrived at a perverse destination. In states where assisted suicide is legal death has become a life-style choice. Assisted suicide is a life-style choice. Read that again, please. Davis is not alone in her decision to exercise her "right" to die. Yes, death thanks to years of advocacy, successful advocacy, is now popularly framed as the right to die. Individuals who live in states where assisted suicide is legal have the right to die. They can exercise this so called right. I find this hard to comprehend. Led by Compassion and Choices and many well known figures it is popularly assumed all people have the right too die. A host of celebrities have affirmed this and Compassion and Choices in recent years has been wildly effective in manipulating the mainstream press into supporting assisted suicide. NPR's Diane Rhem is outspoken in her championing assisted suicide and is deeply embittered her husband was denied the right to die.

I am stunned by how widely accepted the belief is that we have the right to die. This so called right is human pride and the glorification of a narrow definition of autonomy taken to an extreme. The idea we have the right to die is misleading rhetoric. It is wildly successful misleading rhetoric. For example, every Fall I teach a class at Syracuse University Bioethics and Disability. I take a life cycle approach, starting with ethical dilemmas associated with conception and birth and end with issues associated with end of life care. In the last three years I have learned to expect 100% of my students are firmly in favor of assisted suicide legislation. More generally when I express my opposition to assisted suicide legislation to typical others they are not happy. They assume I am deeply religious for I am repeatedly told there could be no logical reason for being opposed to assisted suicide. I find this distressing and find myself increasingly unlikely to broach the subject. Assisted suicide as popularly framed is a stark dichotomy of yea or nay. There is no middle ground and tempers run hot.

Rraming death as a right conveniently ignores the inherent worth of the individual. The individual in the case of assisted suicide is often terminally ill and the paramount fear is that one will suffer. Suffer is code word for becoming disabled; ALS being the worst case scenario. Hence a diagnosis of ALS now comes with a chilling option: assisted suicide as a life style choice. The decision to choose assisted suicide will be met with universal support. No one wants to be "entombed" in a body that is grossly dysfunctional. Life with ALS is a fate worse than death. Total paralysis, especially locked in syndrome is the greatest fear of all. Davis is the post card image of tragedy. Here I am not denying ALS is a devastating condition. But pardon me for noting that we humans, all humans, should garnish minimal respect. By minimal respect here I believe we have the right to live. Liz Carr recently reframed the right to die being discussed In Britain as the right to live and wrote:

perhaps we should be looking at how we can offer greater choice to all people at the end of their lives and not just the few who want a physician assisted death? The Assisted Dying Bill would establish medically assisted suicide as an acceptable and even expected societal response to pain, disability, life limiting conditions and terminal illness. This is to ignore the social factors, such as poverty and lack of social care that can also create suffering in people’s lives. Denied the support to live – or die - with dignity, is it any surprise that people feel they have no choice but to end their lives? What terminally ill and disabled people need is an Assisted Living not an Assisted Dying Bill. Supporters of assisted suicide will tell you that the current law is broken but the current law is exactly where it needs to be when the consequences of making a mistake would be murder. Safety of the many has to overrule the desires of the few. What is broken, however, are the social and health care support systems which are currently failing us all, both during and at the end of our lives. Whether for or against this law, we all deserve as pain free and comfortable death as possible. Legalising medically assisted suicide is not the solution. Link:

I never cease to be amazed at how the wants of a very few privileged people such as Davis garner so much attention. I marvel at how the focus on choice is used to mislead. I recently read Peter Kurti "The Myth of the Right to Die" who eloquently addressed the rhetoric associated with state endorsed euthanasia. In this case, I refuse to use the euphemism "the right to die" for we are really talking about the legality of euthanizing human beings believed to be terminally ill. Let's be clear with our words here. Kurt wrote:

Proponents of the right to die defend this ownership of the “end” and argue that they want to uphold the key principle of individual freedom. Freedom is a basic good, they say... This absolutist view of autonomy comes very close to asserting that the desire or the choice—or even the need—to die must be understood as a right to die. Choice is paramount; but choice has little to do with “rights”. While I can certainly choose to end my life and may desire to do so, the idea that I have a right to do so is not simply erroneous. By harming the web of social relations and obligations comprising community and family life, claiming a “right to die” actually threatens to tear at the fabric of civil society and do irreparable harm to the social roles and attachments constitutive of individual identity. Exercising the freedom to end one’s own life is coming to be seen as a mark of autonomy and independence of mind. But this view, although increasingly widely held, is mistaken because it ignores prevailing social proscriptions about suicide. The “right to die” is a rhetorical device intended to halt further discussion about the acceptability of self-inflicted death. The “right to die”, in other words, is a myth. Link:

People like Davis have plenty of opportunities to make a myriad of choices about the manner in which they willing to extend their life. All people have the right to refuse medical care. One can forego taking life savings antibiotics when an infection is present. A parent with deeply held religious beliefs can refuse to allow physicians to give their child a life saving blood transfusion. The right to refuse medical treatment is a right held by all who are capable of giving informed consent. This is not a right to die or a right to be killed with a lethal prescription. There is a huge ethical gulf between a physician who specializes in palliative care giving a patient pain relief, ameliorating suffering and prescribing a lethal dose of medication. Advocates for the right to die are using euphemistic language to gain the moral high ground. This tactic is working. For example, Davis's sister wrote:

Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation. Some ALS patients use ventilators and feeding tubes to prolong their lives, but that’s not what my sister wanted. Over the last year, I watched her increasingly struggle to eat and speak and do the simple things the rest of us take for granted, like scratch an itch or brush a stray hair from her eyes. No longer able to walk, she spent most of the day in bed. Link:

No physician could force a patient to accept a feeding tube. No physician could force a patient to use a ventilator. These are choices Davis chose to make. At any point after she was diagnosed with ALS she had the choice to refuse treatment. Physicians could be opposed to Davis refusal to utilize life extending care but that would be her choice. The operative word here is choice. Davis made many choices post ALS diagnosis. In June of this year Davis made the choice to live long long enough to end her life via assisted suicide. She made these choices and many more. But there is a difference between making these choices and her human rights. Choice are not the equivalent to rights. Given the severity of ALS any one of a number of choices Davis made could have led to her death. Instead, she made a choice to die a very public and misleading death. In her effort to advocate for assisted suicide legislation she has had predecessors who also had public deaths on behalf of Compassion and Choices. The emotional rhetoric found in tabloids such as People sells. Sympathetic television news segments generate ratings. Again, this misleading emotional made for mass media consumption works. The fact it is wrong is lost in the flow of tears. I too cry but not for Davis but for all those whose lives are at risk.

Having been through the medical mill as a morbidly sick child and narrowly escaping death from a severe wound that took over a year to heal, I will readily admit I have suffered. That suffering has taken the form of gut wrenching pain and serious debilitating depression. Suffering is decidedly unpleasant but to expect to avoid suffering throughout one's life is not realistic. I do my best to avoid suffering but I can freely states I have suffered far more the average human being. Not to revert to my Catholic upbringing but I can state with certainty that suffering has made me a stronger human being. In an effort to eliminate suffering we are being foolish. I don't want others to suffer but like it or not all humans will suffer. Suffering is part of the human condition. The effort to avoid suffering is understandable but unrealistic and there is more than a bit of narcissism involved. Hence the death selfie:

I am sure my words will be met with disgust by those who support assisted suicide legislation. How dare I criticize a person's "right to die". How dare I impose my beliefs on others. Some will proclaim I am an opponent of individual freedom. Others will proclaim I want to undermine autonomy. This makes good fodder for debate. Typical others thoroughly enjoy such a debate. A perfect example of such a "good natured debate" can be found the edited volume Cognitive Disability and its Challenge to Moral Philosophy. Read Chapter 22 and the exchange between Eva Kittay, Jeff McMahon, and Peter Singer that illustrates we are talking about a two tiered morality in which some lives have more value than others.  I know this two tiered system all too well. Most of my life typical others have made it abundantly clear my life is inherently less. Paralysis is a fate worse than death. My body in Davis estimation has been entombed. This viewpoint is wildly wrong. I know this. Liz Carr knows this. My paralyzed peers know this. My blind and deaf friends know this. Our ability to thrive in the face of a myriad of bodily deficits should be celebrated as human adaptation at its finest. Instead, we get the message loud and clear. We are inherently less human. We are a burden. We are a drain on limited health care resources.  All things considered, it would be in the best interest of society if we did live. This is couched in polite language of course. Everyone is kind to the handicapped. We cripples are special. We have your best interests in mind I am told. When I hear these words, "we have your best interests in mind", I am certain of one thing: I shudder in fear and get as far away as humanly possible from the person that uttered those dangerous words. Believe me, I can take care of myself. I have thrived in a hostile world for over 35 years. Don't be fooled by emotional rhetoric surrounding the right to die. See it for what it is. Needlessly premature death to lives worth living. 

Friday, August 12, 2016

Levels of Disrespect

I have lived in the Franklin Square area for two months. The move has been great for me. I doubt I could have survived in my old place because it had no air conditioning. Urban life appeals as I walk all over the city of Syracuse. The city is gritty. I like Syracuse gritty. Industrial era buildings are being repurposed and turned into apartment buildings. Even those buildings that have not been renovated have a certain charm and provide a nod to long gone industrialism that dominated city life. I live in a building that was once an iron factory. I often wonder about the people who worked in this building. What would they think the once mighty industry is gone and repurposed into an apartment building?

In my estimation, the immediate area where I live is a model of development. However, there is one problem I encounter daily. The curb cuts that abound do not remotely meet ADA standards. They are brick and steep. This does not usually present a problem but I do wonder about the winter. I assume I am going to be doing a lot of curb cut snow shoveling. I don't mind this. What I do mind is depicted below:

Without question, curb cuts around me are not well marked. I use this curb cut every day I go outside and I am outside at least three to four times a day. Every day, and I do mean every day, curb cuts are blocked. There is a popular coffee shop on my corner and everyday this curb cut and many others are blocked by parked cars. This is not a rarity, it is the norm. Aside from cars, every imaginable delivery truck also blocks curb cuts. In gritty Syracuse a host of curb cuts are either entirely absent or in such a state of disrepair they are not usable. Every day I end up in the street. Today is was a clean VW jetta station wagon. Yesterday it was the absence of a curb cut. The day before it was a blocked off sidewalk. And the day before that is was a mail truck. A variation on this theme are cars that block the pedestrian crossing at a red light. This means I must meander into incoming traffic to get around the car.

The skeptic is thinking: get over yourself. The person that parked the car depicted above just went to get a cup of coffee and did not notice they blocked the curb. This is likely true. The same can be said for a myriad of delivery men who are pressured to make a certain number of deliveries per day. Excuses abound. Let me frame this differently. Why do people not notice curb cuts? Why do really nice people not notice? The answer is they do not care. Curb cuts are not valued. The people who use curb cuts are not valued. Those that are not valued include a host of people. I know my life does not in the estimation of many hold any value. Just today I read about a woman in California who was among the first to legally access assisted suicide. She wrote: I am losing strength in my arms and hands quickly. I don’t want to live out my life paralyzed, eating through a tube in my stomach and communicating through a machine. I’d rather be free than entombed in my body. I find such statements shocking. By extension am I "entombed in my body". The answer to this question is yes. This takes the devaluation of my people to a level that is a direct threat to my existence. These words make me wonder when will another mass murder that took place in Japan happen here. 

Again the skeptic objects. How did you get from a curb cut to mass murder of people with a disability? Ableism is a spectrum from the innocuous to murder. Ableism exists because we see any and all things related to disability as a perk. Donald Trump crows he has given millions to the handicapped and made all his buildings accessible. Bull. He made buildings accessible because it was required by Federal law. So called "reasonable accommodations" are rarely if ever framed as a matter of civil rights. Ableism exists because ignorance with regard to disability is rampant. Like the blocked curb cut, ableism is encountered daily. And oh how typical others love to rail against the ADA. People have made journalistic careers undermining the ADA. Last week I read about a man in California that had filed hundreds of ADA complaints against small businesses. He is making money off the ADA proclaims those being sued. I don't like these people any more than typical others. But stop, please stop. Think about it. If ADA violations did not exist corporations and small businesses could not be sued. ADA fails abound. ADA fails are everywhere. I see them daily and simply shrug. I shrug because typical others don't care. As Mary Johnson wrote he her book Make Them Go Away, no one wakes up thinking I will be an ableist bigot and discriminate against people with a disability. Yet this does not mean typical others do not discriminate against people with a disability on a regular basis. I have sat through an untold number of meetings about access issues. I am typically the voice of dissent. I make people uncomfortable. Yes, typical others will cluck about being inclusive but when it comes down to the bottom line, meaning money, access is the first line item cut. It is the easiest cut to make. It is easy because typical people do not value the inclusion of people with a disability. Oh they will cluck about it for sure but in reality inclusion is seen as a choice. We will be inclusive if inclusion is not too costly. Health insurance companies produce glossy ads that depict the vulnerable such as the elderly, ill and disabled but will fight tooth and nail to provide the least amount of treatment and purchase substandard wheelchairs.

The photograph above and blocked curb set me off today. I know where I rank. I hate it with passion. I have spent my adult life fighting the good fight. I will continue to fight. This fight is not about me. The fight for equality is about the person walking around today who by bad luck or happenstance acquire a disability. Yes, I fight for the ableist too. We cripples are after all the only minority group one can join unwillingly. The next time readers are in a position of power and see access issues get short shrift I suggest this is not in your best interest. Let that little idea sink into your craw.

Wednesday, August 10, 2016

States Worse than Death: I Don't Think So.

JAMA Internal Medicine has been in the news and references to a recent article abound on various social media platforms. Here I refer to "States Worse than Death Among Hospitalized Patients with Serious Illnesses" by Emily Rubin and other researchers at the University of Pennsylvania. Over eight months a team of researchers surveyed 180 patients who had been admitted to a hospital in Philadelphia with serious illnesses that included heart and lung disease. All the patients interviewed were 60 years and older. The study was conducted between July 1, 2015 and March 7, 2016. None of the patients had limitations on any life sustaining treatment in their electronic medical records. Researchers asked these patients to hypothesize whether they would prefer to die than be in a progressively worse state of being. In typically terse language Rubin wrote:

Death is a patient-centered outcome because nearly everyone wishes to avoid it. Despite this general preference, however, studies among healthy outpatients and those with serious illnesses show that a significant minority, and sometimes a majority, rate states such as severe dementia as worse than death. Link:

What conditions were patients asked about? Conditions that were deemed worse than death include:

Bowel and bladder incontinence.
Relying on Breathing machine to live.
Cannot get out of bed.
Confused all the time.
Relying on a feeding tube.
Need care all the time.
Living in a nursing home.
At home all day.
Moderate pain all the time.
In a wheelchair.

Below is the chart:

As the above demonstrates, about 70% of patients identified bowel and bladder incontinence, reliance on a breathing machine and the inability to get out of bed as a fate worse than death. 60% indicated being confused all the time and 55% for reliance on a feeding tube and 50% for needing around the clock care were fates worse than death. Other fates worse than death were in a wheelchair, constant moderate pain and being unable to leave home--all a fate worse than death.

Here is the kicker: none of the patients had experienced the conditions described as a fate worse than death. Yes, the patients responding to the hypotheticals posed had not experienced any of the conditions described. It seems to me if researches wanted to ask this sort of hypothetical question it would be behoove them to ask people that live with the conditions described. Instead, they did the exact opposite. This makes no sense. It is akin to asking a middle aged white man what it is like to be a black man.

As one would suspect, the study has gotten glowing reviews from those who advocate for assisted suicide legislation. This "data" has been deemed important by none other than the Economist. Under the Right to Die "What is Unbearable: Some Data about an Emotional Issue":

death really can seem preferable to a lifetime of pain and suffering. A growing movement, including this newspaper, thus seeks to legalize--with stringent safeguards--doctor-assisted suicide around the world... Asking people approaching, or threatened with death, how they feel about it, and the moment at which they would like it to come, is a welcome development. Both side of the doctor-assisted-dying debate should pay attention to it.

As an opponent of assisted suicide legislation, I am paying attention. I read the so called "data" and shook my head on wonder. People over the age of 60 were asked a series of questions that was framed as a fate worse then death. Think about what this says about the millions of people who live with these conditions. Let's review the list. I have experience with the following: Bowel and bladder incontinence, cannot get of bed, need care all the time, at home all day, moderate pain all the time, in a wheelchair. In baseball parlance I am 6 for 10. I am not sure I should be impressed with myself for living a life deemed worse than death or appalled by those surveyed. This study was not conducted in splendid isolation. The study relied on fear. Fear of physical and mental decline all humans will experience. Fear of death. This study only muddies the water in terms of end of life care and the distinction between terminal illness and disability. Terminal illness and disability do not necessarily go hand in hand. Years ago I was at a bioethics conference that had a predominance of people with a disability attending. One speaker asked how many people had been deemed terminally ill at some point in their life? Virtually every person in the audience raised their hand. This reminded of Mike Ervin aka Smart Ass Cripple. He was deemed terminally ill. Those physicians that described him as such are all now deceased decades later.

I truly shake my head in wonder when people fiercely advocate for assisted suicide legislation. It is a red herring. Those that fervently advocate for assisted suicide ask all the wrong questions. I struggle to control my bowels and bladder. This can be a messy business. But it is a management issue and not a statement about the quality of my life or the life of others. A breathing machine? Let's play very fast and loose with language. Exactly what is being referred to here? Ventilation support is a wide arc and a vague reference to a "breathing machine" is inherently misleading. Relying on a feeding tube? I know plenty of people who have used feeding tubes for extended stretches and some who are entirely dependent upon a feeding tube. This too is not a statement on the quality of life. Living in a nursing home? When this is used as a reason to believe it is a fate worse than death I consider this an indictment on the industry not the people who end up living in a nursing home. Stuck at home all day? Again why is one stuck at home? It is possible for others to visit and community living is an option. The slogan "our homes not nursing homes" comes to mind. Do I even need to broach the "use a wheelchair issue". Here is a radical idea: provide a properly fitting wheelchair that is ideally suited to a person's needs. If we did that some of the stigma associated with wheelchair use would be ameliorated. Instead, we isolate the elderly for instance in nursing homes and have them sit in a wheelchair junker that does not fit. No wonder this is deemed a fate worse than death.

The answer to end of life issues is not to legislate assisted suicide laws. The answer to providing quality end of life care requires a national discussion. There is no such thing as a good death. This too is misleading rhetoric coming from people who frame death as a right. When I read this study my first thought was people with a disability are being rendered silent. We are absent from the discussion about our life being a fate worse than death. The researchers in this study felt free to imagine what our lives are like. This happens all the time. The experience is surreal. Oh how many times I have had a biped explain disability to me with great clarity and insight that had escaped me the last 35 years. Heavy on the sarcasm here. Just today I read "Academia, Accessibility, Being Spoken For" by Briana Suslovic. Link: She wrote:

It’s a strange feeling to have your own life explained to you in someone else’s terms, isn’t it? When someone else seems to know your language better than you, and then they start translating it into bigger and scarier words, invoking authors you’ve only heard about at cocktail parties, turning your experiences into a case study for fellow scholars to feast upon. That feeling, that dissection, that intellectual erasure-while-remaining-in-the-room… it’s so hard to describe that to someone who hasn’t been through the incredibly de-humanizing experience of being told about yourself in terms you don’t quite understand.

Bravo Suslovic. This is exactly what those that advocate for assisted suicide do not want to hear. They want to render those living a life deemed "a fate worse than death" silent. Advocates that champion a so called good death impose their imagination on our reality. In reality our lives are quite good. If you want to know how to manage incontinence give me a call. If you want to know what it is like to be dependent upon others give me a call. If you want to know about moderate pain, give me a call. Exactly who is the expert here? 

Lastly, please do not talk to me about safeguards in assisted suicide legislation that the Economist mentioned. All the safeguards in the world are not enough. Safeguards exist for a reason. Some lives, lives such as mine, are framed as a "fate worse than death".  This makes me vulnerable. This makes many people vulnerable. I cannot speak for all people with a disability but I can say with certainty I fear accessing medical care. I fear serious illness. I do not fear the pain of being ill. I do not fear how dehumanizing being hospitalized can be. My fear is different. I fear the do gooder physician. I fear the silent assumption my life is indeed considered a fate worse than death. I fear the kind, loving, and compassionate physician that will decide I have suffered enough. I have met one such physician. I also know there are many more that exist. Please be skeptical of the data considered here. I can speak for myself and others too. We just need typical others to listen. I assure you the quality of my life is quite good. I can say the same about all those I know who have adapted to life with a disability. All typical others need to do is to read what we write about our experiences. navigating a hostile world. And please don't worry this bad cripple does not bite.