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Tuesday, April 22, 2014

Abuse of People with a Disability: Those that Dare to be Assertive

I  have not posted much this month. I have had a hectic schedule and this week students have emerged worried and stressed out. Time is a commodity that is in short supply for me and many others who work in academia.  The end of the academic year also puts me in a retrospective mood. The academic year at Syracuse has been wonderful--tremendously rewarding--and without question one of the best academic experiences I have ever had. In fact if were not for debilitating personal angst last Fall I would characterize my year at Syracuse as the best experience I ever had. The symposium I organized, Lives Worth Living, was rewarding in the extreme. And when I use the word I here it is grossly misleading. The spectacular staff of the Syracuse Honors program did all the heavy lifting in terms of labor and organizing. The event could not have taken place without their professionalism and dedication to insuring the day went well. I owe each and every staff person a debt of gratitude.  It was not just this event--the honors staff helped consistently and always with a smile. They have been a continual source of assistance; an amazing group of people.

While I am always retrospective at the end of the academic year two major life events have heightened my feelings: First, after nearly two decades in the same home I will be moving this summer. Second, my son is graduating from Hofstra University. We are a family in transition my son and I. He is about to embark on his adult life. Such an exciting and stressful time for him. I am very proud of him and I often shake my head in wonder--I spawned an adult. He will find his way and like all others have his share of ups and downs. As for me, my travel schedule will be significantly reduced this summer. I have two more events of significance. Since last August I have not been home for more than eight consecutive days. I am physically and mentally tired. I am focused on finding a new place to live. My overwhelming desire is to be a rolling stone for an unspecified time period. I will not tie myself down. I want to remain a man on the move.

As I think and worry about moving I have spent much time thinking about my life in the New York City area. This morning I saw an image that instantly transformed me back to the early 1980s. I was young. I was cocky. I was in graduate school and ambitious. Oh what an obnoxious cock sure person I was. I knew all the answers to life and was not afraid to share my depth of knowledge! Ugh, embarrassing to look back now as an adult. What I am not embarrassed about was my activity in the fight to insure NYC buses had wheelchair lifts. The Mayor of New York was fiercely opposed to putting wheelchair lifts on buses--as were most mayors of major cities. The para transit system politicians yelled worked just fine. Yes they worked just fine for people who were devalued and dependent upon inferior service that had to be planned days in advance. This made me angry and I forced myself on the bus one day. Within a few weeks I suddenly became a bus buddy. I volunteered for what was then the EPVA.  I am not a veteran but they organized events and found people willing to help others get on the bus. I was quickly deemed an expert because I successfully got on a bus--likely once or twice. The opposition to wheelchair lifts on MTA buses was extreme.  I recall the only sure way to get on the bus was to hide near the bus stop with another person using a wheelchair. Once the bus stopped one of us would pop off the curb and grab the front bumper of the bus. With no where to go the bus driver had no choice but to lower the bus lift. This promoted a chorus of boos from passengers--on a good day. On a bad day I would be screamed at and on very bad days I was spit on.  So when I saw the below image I was not at all surprised.



The image depicts member of the National Solidarity for Ending Discrimination Against the Disabled being sprayed with tear gas by the police at a bus terminal in Seoul South Korea. The people in question were gassed on South Korea's Day of the Disabled. I love the irony. The activists were like me in the 1980s. They were trying to something very ordinary--get on a bus. I was never tear gassed but I was certainly verbally abused. And yes as already stated I was spit on. I had beer dumped on my head and once had an egg thrown at me. I heard passengers chant "go, go, go" encouraging the bus driver not to stop for me. I saw bus drivers purposely break the lift key in the off position so they could not use the lift. More than one driver did this with nasty smile on their face. Many drivers lied and said the lift was broken.  I cannot  recall a single bipedal person offering words of support. Not one. I was hard. I wrote down bus numbers and called in complaints daily.  I even go friends to call in as well. I was a man on mission and better yet was not alone.

Times have changed. New York City bus drivers do not bat an eye when I get on a bus. My fellow passengers do not look up. The lifts on virtually all buses work perfectly fine. Bias is rare. Is this proof I now live in a city akin to Criptopia? In a word no. I am looking for a place to live. I called a dozen apartment buildings over the last few weeks and quickly learned the stock answer to my question about a wheelchair accessible unit is no. None are available, the waiting list is 3 to 5 years and they are not taking any more names to add to the list. The message is not subtle--my crippled ass is not welcome.  Essentially 99% of the apartments are not accessible. It is these basic forms of exclusion that are deeply problematic and can and do ruin lives. By basic I refer to accessible housing and accessible mass transportation. This remains a formidable challenge in my life and the lives of others that use a wheelchair to navigate the world. Yes, I can get on a NYC bus and many other buses in major urban cities across the nation. But the vast majority of homes and buildings remain grossly inaccessible. So as I prepare to move I  am reminded my existence is still not valued.

Wednesday, April 9, 2014

Zombie: Walking Dead and Assisted Suicide

I gave the key note address at the 2014"Cripping" the Comic Con at Syracuse University today. I throughly enjoyed. My talk was well received. Discussing the Walking Dead television program and assisted suicide was not easy. I had to gear my talk to these that know the how in passing as well as those that are obsessed with the show. I truly enjoyed as I was well outside my comfort zoom of typical academic audiences and delivery of my ideas. I got to poke fun of a host of bioethicists and even show a photograph of Jeremy Bentham. A win win situation.


And yes that is me made up like a zombie.  The best part of the day was the zombie walk from the Syracuse student center to the quad. I led the way with Diane Wiener who organized the event. A large contingent of people made their way to the quad most of whom were dressed up as zombies. Moans and groans emanated from one and all. People were staring at us for good reason. It is not every day you see a bunch of crippled people, actors, performers, presenters and the university photographer dancing around. There were era formal events being held on the quad. Most professional zombies were young men and women who were lets say wee rambunctious. So much fun to see some of these young men terrorize students. My favorites were a slender young woman who accosted some men playing soccer. She stole their ball and threatened to bite them! Another favorite as a tall large man in surgical garb.

Really off beat day. Not a typical conference thats of sure. I can honestly say I let my freak fly today.  

Wednesday, March 26, 2014

JL on Tim Bowers

The best part of writing this blog are the comments I receive. I am often taken to task and beyond but once in a while I get a comment that reaffirms my writing is important. To this end below is a comment I received from JL that warmed my soul. Bowers has been on my mind as I prepare for my talk on Friday. As I reread the material published to date I grow increasingly disturbed by what took place. JL's long comment highlights why Bowers case is important and needs to be discussed in detail.

JL wrote:

          It’s a crisp fall day in an Indiana farm town.  A young hunter sits in a tree stand some sixteen feet in the air awaiting his prize buck.  His view is tranquil as he enjoys a brisk breeze.  As time passes, images of his expectant wife drift through his mind.  Business is good, his family is growing, and life is as it should be…….simple, secure, and peacefully predictable.   Eventually, as the day progresses, the sun begins to set.  He gathers up his gear and begins his descent, maneuvering down the tree stand as he’s done so many times before.  However, on this particular day, the young man’s life deviates far away from everything familiar.   On his downward climb, he abruptly finds himself flailing through chilly air.   With brutal force, his sixteen foot fall comes to a crushing halt as his body smashes into the cold November ground.  He is stunned, breathless, and confused.  Disoriented and fearful, he tries to reach for his cell phone only to find his desires met by motionless arms.  Trepidation and panic overcome his paralyzed body.  He lay silently and lifelessly for hours.  His flustered mind races as his body begins to fight the trauma it has endured.  The damage to his spine slows his heart rate, lowers his blood pressure, and robs him of his ability to shiver in attempts to warm his body.   Breathing becomes ever so difficult as he struggles to willfully fill his lungs.  The man lays awkwardly positioned on frigid ground, his body broken, and his mind lost in disbelief.  After enduring several horrifying hours alone, help arrives.  Met by a fury of doctors, nurses and terrified family members, he works hard to process his surroundings through a curtain of confusion.  Bright lights, unnerving voices, and white coats rush around him making the graveness of the situation overwhelmingly real.  Quickly, a tangled mass of tubing surrounds and infiltrates his body.  A large hose is thrust down his throat with imposing force.  He bites down in logical opposition to such a barbaric act.  He is so exhausted, so utterly and soulfully exhausted.  His mind and body is overcome by fatigue, bewilderment, and trauma.  He begins to drift off……..finally, finally, it appears he can rest.  At long last, his body finds peace as he enters a medically induced state of sedation.   The process of healing can now begin as his broken body finds reprieve. But, no! Suddenly, the young man finds himself awake again.  His mind is foggy as he tries to fight through the heavy haze of sedation.  He struggles to gain his bearings and make sense of his overwhelming circumstance.  Weeping family members overcome with anguish hover over him.  They talk of his life in a wheelchair and his inability to breathe independently.  He is told of the baby he will never hold, and the hugs he will never give.  Grief saturates the man’s body to its very core.  He is exhausted, hopeless and besieged with uncertainty.  And so it is, at this intensely susceptible moment within hours of injury, that medical professionals present the young man with an option to die.  Hence, with his family in support, and a nod of his head, an emotionally and physically battered man surrenders his gift of life and succumbs to death.                                                                                               
With this turn of events, the family of Timothy Bowers, a 32 year-old husband and father-to-be, grieve his loss and try to move forward.  Meanwhile, the hospital and health care team involved in his case tout their prompt and unwavering endorsement of patient autonomy.  News spreads of the proceedings and support grows for the “courageous” deer hunter that selflessly chose to die and the medical staff that boldly gave him a choice.  And I, as a physical therapist and patient advocate, sit in horror and disbelief over the flagrant miscarriage of events.  
Does one truly believe that Tim Bowers was of sound mind and in complete understanding of his condition at the time he was given an option to die?  Could any human being demonstrate logical reasoning and exercise keen judgment after suffering such emotional and physical trauma?  Of course not.  Tim Bower’s was a shattered and confused young man just as any of us would be after enduring such a nightmarish ordeal.  Furthermore, there is no way Mr. Bowers could have fully understood his plight in light of the fact that medical doctors cannot even detail prognosis at such an early stage.  Traumatic spinal cord injuries are exceedingly unpredictable which make adequate assessment especially in the first hours following injury arduous at best.                                                                                                                                         
All of this raises the next question: why was Tim Bowers’ case handled with such blatant haste?  Has human life lost its value?  After all, Mr. Bowers was not in a vegetative state.  He did not suffer a brain injury.  He could have expressed his wishes at any time in the days or weeks to follow.  Why not slow down, wait a few days, let the patient rest, get his bearings, and reassess options after the situation gains stability?   In fact, it is widely known among the medical community that a progressive loss of function will occur during the initial 24 hour period following spinal trauma.  After this time, edema in the region of injury begins to subside as some areas may even reestablish circulation.  After a 72 hour period, the American Spinal Injury Association guide is followed as initial sensory and motor function is assessed and documented.  In addition, radiology can attain new images that may offer more information to doctors and patient regarding functional outcome.  Also, with additional time, the rehabilitation department can be consulted whereas individuals can gain a better understanding of daily life given persistent paralysis.  In accordance, psychiatric services can assess the individual’s mental state and aid in his or her understanding of the situation.  In lieu of all this, it is clear, that given even just a few days, Tim Bowers could have been equipped with crucial pragmatic knowledge to apply to his life and death decision.                                                                 
Put simply, Timothy Bowers was neither courageous nor cowardice in his accordance with death.   Instead, he was a broken young man inundated with emotional and physical exhaustion brought on by the horrific events of his nightmarish day.  He was, no doubt, plagued by sedation-induced brain fog, total confusion, and immeasurable grief at the time he was approached with an option to die.  Tim Bowers was the beneficiary of the perfect storm:  a family, so adamant they knew his wishes from past conversations based on the hypothetical, they chose to wake him from his medically induced resting state; and doctors, so exceedingly eager to give the illusion of patient autonomy, they lost all medical judgment.  The health care system failed Mr. Bowers and his family.  Physicians put Tim Bowers in a position to end his life despite understanding the distressing physiological aspects of acute spinal trauma and the adverse cognitive effects of sedation.  To appreciate just how senseless this was consider the fact that doctors routinely advise patients to avoid driving a motor vehicle due to impaired judgment, thinking and motors skills following medical sedation alone.  However, doctors allowed Tim Bowers to “decide” if he wanted to live or die. This practice was not only careless, but by many standards, it was criminal.                     
Advocating and granting patient autonomy within our healthcare system is vitally important.  All of us, as human beings, should possess the right to determine the course of our medical treatment.  However, the concept of patient autonomy only works in the best interest of the individual when he or she is of sound mind and well informed.  Tim Bowers, the young father-to-be, was neither.  The actions of the hospital and physicians involved in his case were, at the very least, impulsive, irrational and reprehensible. They effectively committed a fatal injustice by disguising such careless practice as championing patient autonomy.   This type of deception has no place in a compassionate and ethical health care system.


Monday, March 24, 2014

Tim Bowers and Lethal Language

This Friday I am giving a talk about the death of Tim Bowers. Bowers died within 24 hours of a devastating cervical spinal cord injury. Bowers death was highly unusual and controversial. The day after his injury at the family's request Bowers was taken out of heavy sedation and told of his condition. In emotionally laden language Bowers was told he would be a vent dependent quad. Bowers pregnant wife told him he would never be able to hold their child. In all likelihood Bowers would live in a nursing home totally dependent on others. Given this prognosis, Bowers chose to die and the vent that kept him alive was removed. He died shortly afterwards. 

Bioethicists such as Art Caplan, praised the family and physicians involved. A prefect case of a patient asserting his autonomy. I read this statement and shake my head in wonder. What if Bowers had been severely burned? Would he have been given the same "choice"? I think not. What disturbs me is the unquestioned assumption that life as a vent dependent quad lacks any value. When I think of Bowers I am taken back in time to the first year I was paralyzed. There were no high level quads. One night I asked why were there no upper level quads. I was told to think about it. Puzzled I could not come up with a logical answer. Think about it I was told. Would you want to live as a C-3 quad instead of being a T-3 para. Of course not. Nature I was told was allowed to take its course. The logic apparently was any injury above C-8 was not worth living. At C-8 the thinking was one could still transfer independently with a sliding board. Any injury above C-8 created a life of physical dependence that was not worth living. Not much has changed in 30 years. A C-8 SCI has been replaced by being vent dependent. The lethal logic circa 1978 has not changed. Being paralyzed leads to diminished quality of life. Expectations, typical life experiences, are believed to be impossible to obtain or achieve. This belief is deeply ingrained in the American psyche. Lethal thoughts can and do lead to lethal actions. 

If readers happen to be in the Syracuse are information about my talk is below. 

Consortium for Culture and Medicine Seminar 
 Friday, March 28, 2014 
4 to 5 pm 
Room 1507/1508 Setnor Academic Building 
766 Irving Ave 
                 
“Does Lethal Language lead to Lethal Treatment? End-of-Life Issues”

          
William J. Peace, PhD
Renee Crown Honors Program, Syracuse University 
                  
We will discuss the decision-making strategies that take place
immediately after devastating injuries, focusing in particular on
decisions to remove patients from life-sustaining treatment. Of
particular interest are patient autonomy, the notion of dignity,
terminal sedation, and VSED (voluntary suspension of eating and
drinking).  The story of Timothy Bowers, the hunter who was taken off
life-sustaining treatment twenty-four hours after experiencing a
devastating spinal cord injury, will serve as a test case. 
         
Free and open to the public 
          

Monday, March 17, 2014

My Brother Teddy: Artistic Indulgence

I sent a link to the below six minute film to a friend. I did not know how to react--I could not grasp the significance of the film. And the film is significant. It is part of a larger project being undertaken by Kelly OBrien an independent film maker that lives in Toronto. The short film has been critically acclaimed and given its appearance in the NYT it will be widely seen. It is an impressionistic film made by parents of two children--Teddy has cerebral palsy and has a significant physical and cognitive deficits. Emma just turned ten years and is a typical child. The film is told through the eyes of Emma who talks about her life and love for her little brother Teddy.


My friend in a mere two words characterized the film perfectly--artistic indulgence.  The film is undoubtedly captivating. Emma is sweet and kind. She has a lovely voice and the imagery is nothing short of wonderful. It captures a set of Emma's memories of childhood and her relationship with her brother. Teddy's disability is an integral part of their lives. Emma loves her bother unconditionally. There is no doubt in my mind the film will be well received by a wide range of audiences.  I can readily envisions some viewers will shed tears. As a parent I get this. Childhood is all too short and as my son approaches his graduation I am often taken aback--I got old somewhere along the line and spawned an adult.

If the film is so captivating why am I troubled--and deeply troubled I am.  The film is beautiful. Far too beautiful and entrancing. It is hypnotic in fact. It perfectly captures the beauty in sibling relationships and the innocence of childhood. What is utterly absent is reality--the grim reality of what life is really like for a child like Teddy who has severe physical and cognitive deficits. Absent is the fight for appropriate adaptive equipment. Absent is the fight for a quality and appropriate education. Absent are the barriers to good health care. Absent is the lack of accessible housing and mass transportation in the form of school buses with a lift. Absent is any semblance of the reality involved in raising a child like Teddy. Absent is what will happen to Teddy when he turns 21 years old and transitions into meager adult services.

I do not like to write the above. It makes me feel hard and cold; cantankerous for sure. Should I not be happy a film maker finally produced a short film that portrays the beauty of disability and the relationships it fosters? Should I not celebrate the obvious love Emma feels for her brother? I should but I just can't. The day to day life for people like Teddy is just unacceptable. Worse, the reality for Teddy once he becomes 21 years old is even more circumscribed and limited. This is a decision made by society that assumes life with a disability is inherently limited. We decide not to provide or value the needed social supports for people like Teddy. The fact is the timing of the film is bad--these are hard times for people with a disability. The lack of resources and energy directed to enhance the quality of life for all people with a disability is woefully lacking.  So here I sit and feel like Scrooge.  I am sorry but as lovely as the film is I live in a world where my existence is not valued. Collectively we have created a draconian system that is based on a form utilitarianism that literally destroys lives. I am at risk but with the support of others manage to live a full and rich life. I hope Teddy and his parents can create a similar set of significant social webs. Without this,  I worry about Teddy's future as well as mine.  Social isolation is a terrible thing can and does kill the human spirit.

Friday, March 14, 2014

No Remorse: Lucas Ruiz

Erika Wigstrom murdered her 17 month old son Lucas Ruiz. The coroner report identified the cause of death as “acute ethanol intoxication”—-the active chemical in hand sanitizer. According to various news reports Wigstrom confessed to murdering her child after he arrest. She told the police she killed her son Lucas because she did not want him to suffer. Lucas was born with Down Syndrome. According to police she has shown no remorse. In fact she confessed to a previous attempt of poisoning. It is not clear if the previous poisoning was done by Wigstrom or Cesar Ruiz, the boy’s father. Wigstrom is being held without bond. She has been charged with first degree murder. Prosecutors have not established if they will seek the death penalty. According to police reports Wigstrom injected Germ X hand sanitizer into her son’s feeding tube. The blood-alcohol level at the time of death was 0.280, four time the legal limit for an adult to drive. The child’s father is facing a second degree cruelty to a juvenile charge. When Lucas was two months old and about to have surgery to correct a heart defect he is accused of giving his son rum via his feeding tube (Lucas blood-alcohol level was 0.289). The alcohol caused seizures and surgery was cancelled. There is confusion over exactly what took place. Lucas parents have told conflicting stories. The father has admitted to giving his son rum via the feeding tube in an effort to relieve his pain. The mother has admitted to putting hand sanitizer and perfume oil into her son’s feeding tube. 

The death of Lucas Ruiz is a social tragedy. It is a social failure because the system failed to protect a defenseless infant from his own parents. Lucas Ruiz parents poisoned him not just once but twice. I am sure a full and extended investigation will take place. The investigation will not help Lucas Ruiz and I seriously doubt it will prevent future horrific cases of child abuse and murder. This is a grim assessment but we are living in grim times—grim times if you are the parents of a child with a disability or a person with a disability. Social supports for people with a disability are cut to the bone. The social safety net is in tatters. Nation wide people with a disability are struggling. Access to good health care, mass transportation, accessible housing, equal educational opportunities, and employment remain daunting challenges. This however is not how the story of Lucas Ruiz death will be framed. Sensational headlines and lurid details already dominate early news reports. The media spin has begun. 

Wigstrom according to the police has shown no remorse. No remorse! How could a mother show no remorse? She must be evil—the essence of the heart of darkness. But wait! Wigstrom characterized her son’s death as a mercy killing. She did not want her son to suffer anymore. Lucas Ruiz’s father told police he believed his son would be better of dead. He had hoped his son would die before or during the scheduled heart surgery. Wigstrom’s Facebook page contains a video that shows her next to her son’s coffin and the statement “I have no more tears to shed because my kid is so cool God wanted him. I mean, if any body is lucky it’s me for being his mom. I’m not going to cry”. The press has bought into emotion rather than reason. The most disturbing aspect of this is that it works. Wigstrom was on television and told a  terrible story about about how she held her son while he had seizures but things took a turn for the worse. Again, the focus is on emotion. No one wants to see their child suffer. Disability is about pain and suffering. No one wants a disability much less a disability that causes nothing but pain and suffering. This simplistic assessment is shockingly resistant to change. Of course no one wants a disability. In fact, I often darkly remark I do not recommend the experience of being paralyzed. I am also quick to note I do not physically suffer. Like the vast majority of people with a disability we simply adapt to bodily difference. I use a wheelchair. Blind people use a white cane or guide dog. Deaf people learn to sign. People with Autism use alternate means of communication. The list of disabilities is long as is the list of adaptations. It is really ordinary stuff. We are an adaptive animal. Evolutionary theory demonstrates this quite well. 


I am not suggesting people with a disability do not suffer. We do. So do people without a disability. All humans in fact will suffer at some point in their life. What is different for people with a disability is the fact we are expected to suffer. We are supposed to lower our expectations. We are expected to live lesser lives. Our lives are diminished because of our disability. This line of reasoning is common place and deadly. Thus when I read about Lucas Ruiz death I thought of March 1st. March 1st when people nationwide gather in remembrance. On March 1st we remember and honor those with a disability that were killed. Some, like Lucas Ruiz, are killed by their own parents. In the last five years over 40 people with a disability have been killed by the parents.  Other people with a disability are killed by a sibling or care giver.  For the last three years ASAN, ADAPT, Not Dead Yet, National Council on Independent Living, and the Disability Rights and Education Defense Fund have held vigils. These vigils get very little press outside of the disability rights community. I am ashamed to admit I have not attended a vigil. This will change. Next March 1st I will find a vigil to attend and honor Lucas Ruiz and all others with a disability that have died.  That is the story worth reporting about. 

Thursday, March 6, 2014

A Bad Cripple Goes to NYC

Last month Joseph Fins invited me to talk at Weill Cornell Medical College where he is professor of Medical Ethics. I was somewhat surprised by his invitation. Fins is the past president of the American Society of Bioethics (ASBH), a Hastings Center Fellow, and a major figure in bioethics. Our dealings in the past had been testy. Let me correct that, I have been severely critical of Fins and others about the lack of interest and concern about disability access at ASBH meetings. Last Fall I sent Fins a blistering email and as President of the ASBH he was well within his rights to hit the delete button.  Much to his credit, Fins did not delete my email nor did he reply in kind. Instead he called me directly and suggested I become part of the ASBH Presidential Task Force on disability. He also asked me to come to his office for lunch prior to the ASBH meetings in Atlanta so we could discuss the lack of access at past ASBH meetings. A week later we participated in a meeting in Atlanta with many others interested in making the ASBH meetings accessible.  While the results have been meagre there is at least an on going dialogue for the first time. 

Simply put, Fins is a major player in bioethics. He is also a larger than life figure—a big gregarious man. If he is a room you will know he is present. I enjoy his company and respect his extensive scholarship in neuroscience and neuroethics. He reminds me of the many outstanding neurologists I was exposed to growing up on neurological wards of 16 morbidly sick kids. And oddly enough it turns out his father as well as mine worked in the lucrative world of advertising—real life Mad Men. 

I was surprised and delighted to be invited by Fins to talk to residents in the morning and faculty in the late afternoon. I was surprised because invitations like this are infrequent. I consider myself an engaged scholar—I work in my area of expertise, bioethics and disability studies, but act as a scholar and disability rights activist. I am for example on the board of Not Dead Yet and at the same time work and teach at Syracuse University in the honors program. My position in disability activism and academia is to a degree liminal. I am not a bioethicist. I am not a hard core activist. I am neither fish nor fowl and I am doing my best to establish a unique position. I suppose one could characterize me as a buffer that works in two mutually antagonistic fields. It helps that I have legitimacy in academia and disability rights. I am crippled—no way to ignore that. But I also have a PhD from a prestigious Ivy League university that gets my foot in the door. Most importantly, I think I can make a real contribution via the sort of talk Fins asked me to make. 

In the last year it has become clear to me that my work resonates in the health sciences—especially in teaching hospitals. Physicians know our health care system is failing people with a disability. They see first hand the over whelming effort made during critical care to save people’s lives. These lives are then lost or destroyed in the weeks and months that follow when the required long term social and physical supports are grossly inadequate. It must be gut wrenching to watch. Imagine treating a person after a traumatic spinal cord injury and taking them from the crisis of injury to medical stability. What a great victory. But the knowledge that this same person is given an ill fitting wheelchair, an inappropriate wheelchair cushion, and after two weeks of rehabilitation is sent to a nursing home at the age of 25. This social failure must break the hearts of all involved not to mention be soul crushing for the person who was injured and is trying as hard as humanly possible to reinvent them self.

I suspect Fins gets disability far more than his peers in medicine and bioethics Fins sees well beyond any given diagnosis and considers familial, social, and economic issues. If framed correctly, I can envision him incorporating a disability rights perspective that could improve the lives of people with a disability. Based on how Fins described his recent research and his forth coming Rights Come to Mind: Brain Injury. Ethics, & The Struggle for Consciousness, his work has had a profound impact on his conception of disability. But I know something Fins does appreciate enough but will over time come to realize. We are treading into uncharted territory and mine fields abound. Incorporating a more nuanced discussion of disability in the health care setting, especially in medical education, is going to be an uphill battle. Great social skills are required as are an open mind, willingness to admit error, and the swift ability to accept change. All this is based on the premise of mutual respect. For my part, I am deferential to clinicians. I go out of my way to reassure them that I am not “in the trenches” nor do I make the life and death decisions they do. I am in short not here to second guess—a statement that prompts a veritable sigh of relief. Fins did the same thing with me and showed the respect that is too often absent in the life of a scholar with a disability

Fins went all out to make me feel welcome. The medical school picked up my expenses and Fins made sure I was escorted every where I went. He introduced me to people as his colleague and was gracious at every turn. In the morning I spoke to residents with Fins and two other scholars in a good sized auditorium.  We had a wonderful lunch at the faculty club and I got to spend some time with Kim Overby discussing her work. Kim was kind enough to show me where I was going to be speaking to faculty. To say I was more than a bit intimidated would be modest. My first thought was I am in way over my head. I half expected Obama and Putin to walk in the door with an entourage and discuss the crisis in the Ukraine. I was deep in the heart of power central. 



Rather than read my paper, “A Thick Description of the Atypical Body in the Health Care Setting”, I talked off the top of my head. I tried to accomplish three things: establish the devaluation of people with a disability that can and does result in unnecessary death. I suggested a Geertzian approach to patient care in the form of a thick description that could lead to greater enlightenment. I essentially argued medical knowledge takes one only so far, the webs of social significance of any given patient must be understood. Lastly I discussed the Tim Bowers case as an example of a life needlessly ended. I took strong exception to the reaction of most bioethicists—that Bowers asserted his autonomy and though his death was sad it was his choice to make. I tried to emphasize Bowers was given the illusion of choice and provided an overwhelmingly negative assessment of disability.

I think my talk went well. I am sure three people left the room clearly unhappy with my words--perhaps there were more.  While I am unsure how my words were received I have no doubt those that escorted me around were taken aback by how inaccessible the hospital was. Locked bathrooms abounded. Accessible entrances were blocked off. Getting from point A to point B required great thought and an obscure path of travel. As one would anticipate the more prestigious the location in the facility the greater the lack of access. The Faculty Club and Boardroom bathrooms were grossly inaccessible and gorgeous. Getting in and out of the building was a not easy either. The accessible entrance was blocked off after 5pm and required some creative maneuvering. It was one of those rare times needless obstacles actually made me happy. If my existence were truly valued I doubt bathrooms and entrances would be inconvenient or absent. This drove home an abstract quite effectively.