Why I love Writing at Bad Cripple

This blog is a labor of love. Given the degree to which most people with a disability are disenfranchised they need access to blogs such as mine. Need is a powerful word and I believe it is apt. I have a very wide readership now and write so that an average person can understand larger points made by scholars. I do my best to solidly ground what I write in a practical day to day way that any person with a disability can relate to. My intent is to merge scholarship and activism in large part because I refuse to go down the bioethics or disability studies rabbit hole. This is not a knock against either field, both are rigorous fields of study in academia I enjoy.

A few months ago I was forced to start aggressively moderating comments. Too many comments I was getting were nothing more than vicious diatribes. I have no idea why there was a striking increase of such comments but it reflects my life long ability to piss people off. The most recent group of people to be upset with me are Catholic bioethicists and Catholic commentators. What did I do? I published an article about sexuality and an experience I had as a young man. I thought my essay was ancient history but I knew it would generate a buzz and buzz it did. It is my hope this buzz will die down. Thus it was with trepidation that I read Jennifer Fritz comment on one of my recent posts.  Link: http://www.patheos.com/blogs/jenniferfitz/2014/05/how-not-to-do-religion/  Apparently Fritz is a long time reader and I must say I burst out laughing at the last line of  Fritz's "How Not to Do Religion".

Edited for a strong language warning on the link.  W.P. is many things, but choir boy he is not.  Or rather, he’s like choir boys really are, not like their mothers imagine they are. 

I want one and all to know I was never a choir boy. Not with my voice and utter lack of musical ability. I was instead an alter boy! Yes, as a bipedal child I was an alter boy. Let that one stick in your craw and ruminate over.  One last point, Fritz is correct choir boys and alter boys are nothing like their mothers imagine them. Golly, I hope my mother is not reading this!

An ode to Kate

I love my black lab Kate.  She is an amazing dog I love with all my heart and soul. She has never hurt me. She has not broken my heart. She is dedicated. She is loyal in the extreme. She makes me laugh daily.  She has proven to be remarkably adaptive. In fact she experienced her first foray into Midtown Manhattan and she not only survived but thrived. However, our relationship did not get off to the best start. Let me explain because it was all my fault.

I got Kate from a great breeder in New York.  I was all on board for a labrador. My big yellow lab Burt that grew up with my son was getting old. I guessed Burt was a year or two away from death. I had spoken to the vet and many other dog owners and all stated raising a puppy was easier with another dog in the house. They were correct. Kate was a gentle and loving puppy in contrast to Burt who was a nightmare puppy from hell. He did not cry when left alone. He howled. Looking back he experienced acute separation anxiety. Burt though turned out to be the most loyal animal that ever existed. He was not very smart but he had loyalty embedded in his DNA. My son and I joke if we asked Burt to jump off a cliff he would do so without hesitation. If we asked Kate to do the same she would look at us like we were nuts. Both labs but very different personalities and approach to life.

The problem with Kate is that I dislike raising puppies. In other words Kate was fine. The so called problem rested with me. In raising Kate I learned I like other people's puppies. I get to laugh and coo over how cute they are and leave the work to the owner. Kate was cute in the extreme and I do love her puppy pictures. She came to me at eight weeks and weighed under 10 pounds. She melted my heart. She is 11 years old now and a slender 62 pounds. She has not slowed down one iota as she has aged. She has been described by a friend as a pepper pot. Another person I once knew called her jingle dog.

My one and only fond memory of her puppyhood was watching her interact with Burt. Burt loved to play catch but as he approached the end of life he could not run any more. When I would throw a ball as Burt aged the distances got shorter and shorter. This made Burt sad. Enter Kate. I would throw the ball as far as I could and down a sharp hill. Burt would amble away from me to the edge of my driveway and watch Kate speed by at warp speed. She would retrieve the ball and rather than give it to me she would drop the ball next to Burt. Burt's tail would go crazy as he brought he ball back to me. He and Kate loved this game. I did too. We played it every day. To me this game was adpatation at its finest. It made me proud too. In fact when I tell this story I get teary eyed. I have thought a lot about Kate, Burt, friendships, love, and loneliness. I have tried to find some comfort in who I am as I age. And aging I am. My son told me his roommate saw a picture of me online and thought I looked distinguished. Shit, I replied that is another word for old. Way old.

My stay in New York City obviously stoked a flood of forgotten memories and prompted much self reflection. I lived in the city as a young married man. My son was born in New York City. My 20s and early 30s were filled with many milestones. Life was ahead of me. Fast forward to today.  Life has not gone according to plan. I doubt life ever goes as one expects but I seem to struggle more than others. Yet I also know and will always acknowledge I am exceptionally lucky. I have had rock solid family support. I have forged deep and meaningful friendships. I enjoy speaking at various universities. I love to teach college students. I enjoy my work immensely. I have had a good life. A good atypical life. And frankly the atypical part of my life makes me angry. The issues I encounter are needless: specifically travel, mass transportation, and housing nightmares. All are fraught with bias, bigotry, and a gross lack of access. The mere fact I have not let this troika kill my spirit is satisfying by itself. The lack of access, culturally and physically, remains deeply embedded in American society. Worse, very few people care and I often find myself stating no one gives a shit. I state this without rancor. It is just a fact. Bottom line: I live in a hostile world in which my presence alone  is a problem. Want a hotel room in New York City? Be ready to make many phone calls and hope what is said and promised are reality. Want to rent a car? Be prepared to make many phone calls and know despite the energy and time expended the odds are 50/50 a car will be present. Want to move to Syracuse? Know that 99% of places for rent are not accessible. Ask a real estate agent for assistance or approach a building and inquire about an accessible apartment? Expect sorry I cannot help or there is a three to five year waiting list for an accessible apartment. Effort expended on the part of others? Zero. Interest in why no accessible housing exists--zero.  So yes I am mad. I am a bad cripple for good reason. In comparison to the bipedal people the social and physical environment is designed for Kate is looking pretty good. She cares and loves me.

On Enduring

Recently I was cleaning out a file draw and found an essay Arthur Kleinman published in the Annals of Internal Medicine circa 1978. Far ahead of his time, Kleinman argued traditional biomedical solutions in health care were no longer effective. The focus of modern medicine is squarely focused on disease and healing. An abnormality is identified, a treatment program created with a single goal: cure the disease or physical deficit. This approach works—but not all the time. What happens when no cure exists? In my experience one enters into a liminal state or as Victor Tuner called it “betwixst and between”. A person such as myself who is paralyzed yet healthy symbolically represents the limits of medical care. I failed to be cured. As a result, my existence is deeply unsettling in most health care settings. Deeply stigmatized I am. 

When clinicians deal with a healthy person with a disability they typically respond in two ways: some become frustrated a cure does not exist and simply state “there is nothing more I can do for you”. This is counter productive if not demeaning. I have heard these words many times. I translate this statement to mean go away. You have a spoiled identity. Some clinicians simply state “I do not treat patients with severe disabilities. You should see a specialist”. Other clinicians fall into disease management mode. The focus is not on cure but maintaining current levels of function. Disability for both clinician and his or her “patient” is bad. Very bad in fact. So bad no avenue or course of treatment is left untried. I call these people “professional patients”. Another group exists: cure junkies. These people reject disability and they are preyed upon by physicians who are ever so close to cure and dangle this carrot in front of people with a disability who fail to adapt to a bodily deficit such spinal cord injury.

As I read Kleinman’s essay I thought of my recent post in which I suggested hospice care was a valuable way to approach end of life issues. Quite a few friends contacted me who did not like my suggestion. Their serious reservations have merit. Health care disparities for people with disabilities are wide spread. Many people with a disability at the end of life are not over treated as most fear but rather  under treated. Stories abound about how clinicians negatively assess “quality of life” for a person with a disability. Many people with a disability seeking basic health care are encouraged to die. The perception is they are needlessly suffering. Thus it is not  uncommon to hear the following: “We can make you comfortable with an alternative and less aggressive treatment protocol.” The so called alternative is death. The problem as I perceive it is that clinicians have a very narrow and insular perception of disease, illness and disability. Kleinman defined disease as “abnormalities in the structure and function of body organs and systems”. Clinicians identify what is physically wrong with the body. Illness in contrast is what a patient experiences when they are sick—and all disabled people are thought to be sick in some way. Remember this was written in 1978. Illness and disability were solidly linked together. I would like to believe we as a society have evolved and developed a more nuanced understanding of disability. Sadly, this is overly optimistic. Stigma, social isolation, poverty, and unemployment remain the norm for people with a disability. 

The lasting problem with life post disability is that health care professionals routinely ignore all issues that inevitably arise outside the confines of the institution in which they work. It is as though the larger world does not exist. No support or dissent is expressed when discharge options for a person are far less than ideal if not deadly. Discharage planners are powerless and not effective. For example, what good is the advice of a clinician who tells a homeless man or woman with a badly infected foot to keep the limb elevated, take anti-biotics, and change the dressing twice a day? The clinician might as well suggest a trip to Mars. Utterly absent is any thought of what Kleinman identified as the experience of living with an illness. Kleinman’s dated language is now easily framed as disability narrative. Such narratives are regularly dismissed by health care professionals as “anecdotal”. This drive me crazy. The memoirs produced by people with a disability are diverse and of the highest quality. Few if any are widely read among health care professionals. The result is ignorance of disability abounds. Much is known about diverse physical deficits but much negativity is associated with atypical bodies and people with a disability. Worse, disability is always perceived to be “bad”, an unfortunate departure from the norm. Well, when compared to typical bodies a person such as myself will fail the comparison test every single time. Lost is the knowledge gained from being atypical. We people with a disability often go through the medical mill. We learn much through our too often painful experiences. That is physical pain and the pain caused by bigotry and ignorance. 

Let me return to Kleinman. In Lancet he recently wrote an essay “How We Endure”.

Poverty, joblessness, migration, and other social realities of our era, along with the experience of major natural disasters, nonetheless revivify for many the importance of striving to endure. For professionals who complain of burn-out and for family caregivers who exhaust their own inner resources, for those involved in humanitarian assistance, and for many other people faced with unrelenting hardship, and physical and emotional burdens, it might prove useful to reconsider the value of enduring in human experience. Instead of asking why patients, caregivers, physicians, aid workers, and other health professionals burn out, suppose we ask how they endure? And I mean by endure withstand, live through, put up with, and suffer. I do not mean the currently fashionable and superficially optimistic idea of “resilience” as denoting a return to robust health and happiness. Those who have struggled in the darkness of their own pain or loss, or that of patients and loved ones, know that these experiences, even when left behind, leave traces that may be only remembered viscerally but shape their lives beyond.

I can comfortably state that I have endured much pain and suffering in my life. I had three massive surgeries, many lesser surgeries, prolonged hospitalizations (as in months on end), I was bed bound for almost a year. While I do not recommend what I experienced, through it all I matured and became a better person. I endured as Kleinman suggested with the knowledge I was not so resilient that I would return to the norm. We need to listen to those willing and able to endure. We need to listen to parents of infants born with profound disabilities. We need to listen to those parents that take of children with profound disabilities. we need to listen to those that care for elderly parents. We need to listen to people with disabilities such as myself. We need to listen to all those that endure over the course of the life cycle.  If we do this all will benefit. But we need to listen very carefully. We need to pay close attention to the words and phrases we use: patient centered care, quality of life, end of life issues, autonomy, medical futility etc. When I hear physicians utter those words I worry. As Ben Wilfond observed a decade ago the phrases above are not accurate clinical descriptions and instead serve to convey a normative view about the quality of life of others. It enables clinicians to characterize the use of anti-biotics as “aggressive” when treating a severely disabled person or a person near the end of their life when in fact use of such antibiotics would be typical be considered routine. In short, using the terms above hides what is really being judged: the quality of life of people who are different. This is a social problem all the medication in the world cannot cure. 

A Reply to "What Should We Do About Severely Impaired Babies".

In the Kingston Whig I read an editorial by Udo Schuklenk who teaches bioethics at Queen’s University. Schuklenk’s, “What Should We do About Severely Impaired babies”? made me lose sleep last night. Link: http://www.thewhig.com/2014/05/09/what-should-we-do-about-severely-impaired-newborns Utilitarianism has its its hooks into the health industrial complex, mainstream press, and contemporary popular culture. Access to health care is increasingly based on the lives we perceive as being worth living. This is a dangerous if not a deadly line of thought for vulnerable populations. I am one of those people whose life is not worth living in the estimation of many—paging Peter Singer at Princeton University and all those at the the University of Oxford Uehiro Centre for Practical Ethics. So whose life lacks value? Severely disabled infants, elderly people with Alzheimer’s Disease, those with a profound cognitive deficits, vent dependent quadriplegics, and many other costly and undesirable human beings. This makes me shudder. It is sobering and distressing to know my existence is unwanted. It is frightening to know some, highly educated others, think my life has no value and would like to end my suffering. 

It is does not take a great deal of insight to establish whose life is worth living. All those that are productive and contribute to society in a very narrow sense have value: bipedal people with typical cognition who are employed and supposedly fully autonomous. What utilitarianism fosters is a business model of life or bottom line approach that is essentially heartless, unimaginative, and draconian. Compassion in health care? Forget it. All hail modern medical science and expensive high tech diagnostic tools. Of course the proviso is only those we value have access high priced high profit medical technology. Worse, we can use that technology to prevent expensive, oops, I mean severely disabled infants from existing. Schuklenk celebrates prenatal testing.

Every year a small number of fetuses are carried to term who have no reasonable chance of living a life worth living. They are so severely impaired that they will live a miserable, short life until they eventually expire. The good news is that, courtesy of prenatal screening, only few such births take place and the numbers are decreasing. We have some data from the Netherlands, where a few hundred out of about 200,000 newborns annually tend to fall into this category.

What Schuklenk is celebrating is a new form Eugenics. In stating this I just lost my bioethicists and neonatology readership. When I use the E word bioethicists and neonatologists shut down. These heath care professionals believe my views are offensive and unbalanced. Surely I must be a religious fundamentalist whose faith and adherence to religious doctrine clouds my thought. Worse, some neonatologists will furiously assert “I am not  Nazi” when asked probing ethical questions. There is no effort to look beyond the narrow confines of the institution and NICU where they ply their trade. This enables a scholar such as Schuklenk to wonder:

Would it make much sense to undertake significant surgery with the – unlikely but possible – result that the newborn might live a miserable life for another year or two before his impairment eventually catches up with him and kills him? Should we withdraw nutrition and hydration while providing palliative care so that he doesn’t suffer? Should we actively terminate his life to end his nightmare quickly and painlessly, as well as that of his parents? 

I find the above stunning. Schuklenk is a widely published philosopher and I cannot help but ask what if any experience does he have among those that live and thrive with severe disabilities. Has he ever talked to a vent dependent quadriplegic? Spent time at a group home?  Talked to people who care for a beloved elderly parent with dementia? Has he ever thought about the contribution those with a profound disability can make to society? I suspect the answer to all these questions is a resounding no. This is in part why I find utilitarian philosophers dangerous. They have not seen the power and creativity of the disability experience. They could not grasp that my entire conception of disability radically changed because of my exposure to a vibrant, funny, and profoundly disabled young woman who would be deemed non verbal by neurologists. They do not see what Eva Kittay calls emotional labor. They do not get why I am comfortable using the word Eugenics. You see when I was an undergraduate the most common person using a wheelchair was a person with spina bifida. I have not met a man or woman with spina bifida in a decade. Unlike Schuklenk I do not celebrate prenatal testing. I cannot celebrate the 93% termination rate when spina bifida is identified prenatally. The decision a woman makes to terminate a pregnancy is not done in a social vacuum. If 93% of women terminate such a pregnancy it takes a lot of intestinal fortitude to reject what virtually all women do in a comparable situation. I call this the illusion of choice. 

What Schuklenk fails to consider is that life with a disability, even the most severe of disabilities contains great value. Like many other scholars, he cannot make the required intellectual leap in logic. Disability is bad. Disability must be eradicated. Hence he can reasonably argue that health care professionals must give up the sanctity of life doctrine and replace it with a quality-of-life ethic. 

There is no point in maintaining human life for the sake of it if that human life cannot enjoy a moment of its existence and is trapped in a never-ending cycle of immense pain and suffering. A quality-of-life ethics would not merely ask ‘do you exist’, but ‘do you have a life worth living?’, or ‘will you have a life worth living?’

What is conveniently overlooked is the long a dismal history associated with disability. When it comes to disability—the social and physical implications—most will think a person such as myself has a very poor “quality of life ethic.”  People often assume I am unemployed and asexual. People are often taken aback I have a PhD from Columbia University. People are shocked to learn I have a son, was married and divorced. In fact I am routinely asked “are you the biological father” or "how long after your son was born were you paralyzed".  Essentially, the typical is thought to be beyond my grasp. What people see is all that I cannot do. First and foremost is my inability to walk. In response I routinely joke that bipedalism is grossly over rated. Behind this joke, a pointed joke, few get the fact quality of life ethic does not include virtually all people with a disability. This is wrong and the consequences are built upon 100 years of being a marginalized other.  

I find the cultural response to disability disheartening and the power imbalance between myself, bioethicists and health care professionals to be profound. Barbara Farlow who brought the editorial by Schuklenk to my attention is correct when she asserted that the mere fact the prestigious American Thoracic Society entertained such a discussion is deeply problematic. Worse, the argument against Schuklenk was framed strictly within religious terms and utilized an amorphous concept of dignity. This I cannot help but to conclude is not just misleading but disingenuous—a straw man approach to debating.

The editorial by Schuklenk reminded me of Harriet McBryde Johnson’s famous debate with Peter Singer. Her enlightening exchange brought Johnson into the national spot light. It helped that she whipped Singer in her public debate with him. An unabashed atheist Johnson, dismissed religious claims about the sanctity of life. She did not invoke the slippery slope. Instead, she asserted her humanity. How dare you or anyone else question or subvert the quality of my life. I am a human being and no human should be forced to defend their humanity, There is no such thing as a nonperson. So called nonpersons or those that think certain thresholds must be obtained to be considered human are missing a very basic aspect of humanity—disability and difference is a natural part of the human experience. It is in fact good for the human species. And it has been ever present. It need not be eradicated.

After more than 40 years of progressive legislation designed to empower people with a disability, the battle for equal rights remains very much an uphill battle. For Harriet McBryde Johnson, myself and all those with a disability that have the gall to assert their humanity we take our lives seriously. We value our existence. She wrote that Singer:

insisted he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along, and thereby avoid the suffering that coms with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened. Whenever I try to wrap my head around his tight syllogisms, my brain gets so freed it’s—almost fun. Mercy! Its like Alice in Wonderland. No, having leapt down the rabbit hole and landed in this place, I find things becoming curiouser and curiouser. 

The fact is the presence or absence of a disability provides no indication about a human being’s quality of life. I know more than a few people with no disability whose quality of life is less than ideal. I know many people with a disability whose quality of life is envious. Life is not about thresholds we must reach but rather about social inter connectedness and doing the best we as human beings can do.  

Loneliness, Autonomy, Fear and Tim Bowers

Every person I have met with a disability routinely feels lonely. I am not referring to typical loneliness most feel at some point in their life. I refer to loneliness in a deeply painful way that makes your soul and bones ache. This is the sort of loneliness I feel. It is the loneliness most people with a disability feel on a regular basis. I know I do. I know there are days I am weary. I simply cannot face a hostile world. I cannot leave my home because I do not have the psychic strength to deal with the fact my existence is not welcome. I cannot deal with the routine harassment or stares or the mothers who yank their kids arm when they see and tell their child "watch out for that wheelchair". Well done, mom. A lesson has been learned: fear the human being using a wheelchair. 

I am not particularly lonely today. Yet I want to write about loneliness because my friend Stephen Kuusisto at Planet of the Blind astutely wrote that he belongs to "fellowship of lonesome people". Link: http://www.planet-of-the-blind.com/2014/05/confessions-of-a-lonesome-disabled-and-autonomous-man.html Amen brother! Kuusisto contends mainstream lives, typical lives, are the "products of foundation". Kuusisto notes: 

The underpinning or “base” I’m referring to results from autonomy. Its a Greek word. It refers to the capacity of a rational individual to make informed, un-coerced decisions. People who grow up in fear don’t necessarily develop such capacities. Loneliness is a byproduct of fear. I don’t know how to be among you, it says. If I’m lucky enough to be among you, I must hide who I am. 

I never thought that loneliness was a by product of fear. Fearful I am. I know I am without a doubt very lucky. I had great parents. I had the foundation Kuusisto refers to growing up. I had a good foundation for much of my life. But I have always struggled with fear. I am a fearful man. I am fearful because I know the bipedal hordes that surround me consider my existence sad, an affront really, and most wish I did not exist. I am the symbolic representation of all that can wrong. Kuusisto is correct when he asserts:

Autonomy deficiency is the biggest problem faced by people with disabilities. We don’t talk about it enough. Instead we say “self-advocacy” —as in Joey needs to learn how to be a self-advocate...You can’t be a self-advocate, or a member of a community, or even a decent dog owner, without having achieved the capacity to make informed and healthy decisions.

Kuusisto is correct--people with a disability have an autonomy deficiency. I would not use the same phrase however. I suggest we people with a disability are given the illusion of autonomy so that those around us who despise our existence feel better when our human rights are violated. We are not bigots, we are honoring autonomy. In a word, bull. Tim Bowers was given the illusion of autonomy. Last Fall while hunting Bowers had a devastating cervical spinal cord injury. At family request, he was taken out of a medically induced coma and asked if wanted to live by his family and doctors. Bowers decided life as a vent dependent quadriplegic was not for him. He chose to die. Bowers decision was hailed as a victory for autonomy. Bioethicists crowed his death while sad was evidence bioethics has made a major contribution to patient centered care. Bowers decided for himself that he wanted to die. Peter Schwartz, Indiana University Center for Bioethics stated: The case of Tim Bowers is truly a triumph of autonomy, a case where he had a chance to make a decision.  In addition, people who knew him have asserted that he was consistent in never wanting to live in a wheelchair.  Link: http://iucb.wordpress.com/2013/11/16/tragedy-and-choice/ 

I find it hard to wrap my brain around the celebration of Bowers death albeit a sad one of supposed choice and tragedy. Bowers death was tragic. But choice? Autonomy? No. Bowers and his family did not make an informed decision. They made a decision based on fear and stunning ignorance about the quality of life for a man post spinal cord injury. All point to the fact Bowers, before his injury, had stated he would not want to live life in a wheelchair.  Let me ask this: have you ever met a person that desired to be paralyzed and use a wheelchair? Many people speculate what life post spinal cord injury is like. All come away with a negative assessment and use a throw away line like "I would never want to live in a wheelchair".  Do these people ever ask a paralyzed person what life is like post injury. Never.  If they did they would not like the answer. For example, I would state life is sweet pre and post paralysis. I like my body very much. It serves me well. In fact I would not change a thing about my life. This is the answer people do not want to hear. They want tragedy. They want sorrow. They want me and others with a disability to wail and be full of sorrow. Why is this? Kuusisto noted that:

Now everyone loves autonomy: religious zealots, ideologues, business men, politicians, generals and admirals—all wave the autonomy flag. This is because “informed” (for them) means willing. In turn they get to decide what’s healthy for you. 

This is why I am so fearful. I fear the unknown they. I truly fear any health care system dominated by people who know nothing about life with a disability. Good people in Indiana  legally killed a man. There I said it. The physicians and family of Tim Bowers needlessly killed him. They couched the decision in emotional rhetoric that obscures the real issue: Bowers was victim of a compassionate and legal homicide. In stating this I am an extremist.  Bioethicists will shut down and refuse to engage. Bowers family will cry and scream in out rage. We loved our son. I loved my brother. How dare you! I dare to state the painful and hurtful truth because I do not want others to needlessly die.  I do not want to die. All the wrong questions were asked at the time Bowers was injured. No one speculated about what he could do. No asked how can he be autonomous? No one asked how can he hold his soon to be born child? No one asked about the future? No one reached out to others with a similar injury leading a good life.  Again, this is why I am fearful. People such as Bowers that die are applauded. People that choose to live are expected to demonstrate they remain human. They must demonstrate their life is worth living.  They are, in a capitalist society, deemed an economic drain  not physically capable of making a contribution to society. Thus I would observe as many others have it is far easier to die than it is to live. But my oh my life is sweet. I would not change a thing--including paralysis. A conclusion I suspect Bowers would have come to had he been given a chance. 

Life is Never Dull in the Land of Disability

I thoroughly enjoyed using my handcycle all winter and this wet and cold spring thanks to a trainer. My bike sits smack dab in the middle of my living room. A perk of living alone is that no one complains about the appropriateness of a bike in the middle of the largest room in my house. As the weather theoretical is supposed to be warming, I am eager to ride my bike outside. I have had a few rides outside but not many. I am still learning about my bike too. Yesterday I brought the bike to a great local bike shop for a tune up. I had a long gear talk with the bike guys. Bike people I have learned are gear geeks. One and all were very impressed with the bike design. No upgrades are needed and the bike needs a few minor tweaks. As I left the bike shop I felt really good. No one asked rude or intrusive questions such as why I was paralyzed. No one stared at me. No one was rude. No one said anything nasty. The focus was squarely on my bike and because it was different there was even a cool factor involved. Maybe, I thought, people are not as rotten as I think. Maybe ableism will become a thing of the past. Maybe I will fit into mainstream society before I die. This is a weirdly optimistic line of thought.

For those that know me, do not worry. I am not going to suddenly become Mr. Sunshine. As is the norm, one positive social interaction at the bike shop was quickly followed by an overwhelmingly negative experience. I went to the local market after I left the bike shop. Within minutes I knew I was in trouble. An older man started following me around. He kept his distance but it was painfully obvious he was stalking me. I was worried. I knew he would engage me at some point. I knew it was going to be unpleasant.  I did my best to lose the guy. I succeeded--sort off. As I left the store there he sat in a pick up truck in handicapped parking no less waiting for me. Worse, he was on the passenger side of my car (I enter my car on that side). I put my bags in the back of my car and left my car to go to another shop. I do not need to go anywhere but I hoped the man would tire of waiting for me. I had no such luck. Screw it. I went to my car and the man is standing between his car and mine. His driver side window is down and his wife is sitting inside. I know I am screwed. I open my door lock my wheelchair and he drops the bomb I knew was coming. He said "God struck you down because you have evil in your heart. You committed a mortal sin". My face remains passive as though set in stone. He went on: "If you are not evil God struck you down, crippled and maimed you body, because your parents are evil and committed unspeakable sins for which God is punishing you". His wife then chimed in: "We will pray for your rotten soul and terrible body. God may forgive you. You must pray for forgiveness. Even evil people can see the light through the goodness of God".

These two radically different social interactions took place on the same day, in the same town, and within a mile of each other. Is it any wonder newly minted crippled people struggle? I am reminded of a line in excellent film Murderball: "In the beginning paralysis is a mind fuck". The mind fuck is not adapting to a paralyzed body but to the verbal assaults by strangers, social isolation that comes with wheelchair use, and stunning ignorance routinely displayed by bigots such as those I described above. I have been paralyzed for three decades and still struggle when accosted. I have learned engaging people who invoke God is punishing me is useless. However, I have developed a reply that will at least lead to silence. I replied to the man and woman by simply stating "Thank you for sharing your thoughts" with dripping dead pan sarcasm.  I better tread lightly here, who knows I might get struck by lightning.

Has the End of Life Been Hijacked?

I regularly find myself puzzled by advocates for assisted suicide.  There is a fervor for death I find unsettling. That fervor is palatable in some people. Here I think of Thaddeus Pope, a legal scholar I respect but a man I do not understand. Why I wonder do advocates for assisted suicide get so excited when they engage me and others who are opposed to assisted suicide? I also wonder what do they really think of me? Am I respected as a scholar and activist? I simply do not know. In fact I sometimes feel like a speed bump in the road--a warning to slow down that can and is often ignored.  What I do know is that far too many people in this country die badly. Alone, often scared, and almost always in a hospital. This is not good. This is the common ground advocates and opponents share--we want the end of life to be as humane as possible. We are profoundly different in the way we approach this fundamental dilemma.

As I drove up to Syracuse early this morning I was thinking about end of life issues and how it feels nearly impossible to change other people minds. I find this frustrating in the extreme. I also feel there is a core problem I am missing. So as I pumped gas into my car I was dumbstruck to read an article in the Vancouver Sun. The Canadians I feel have a more nuanced approach to end of life care. I could be wrong but long ago a Canadian Border Guard told me "Unlike you Americans we still value dissent". As I read "Death with Dignity Isn't About Euthanasia, Says Palliative Care Expert". See: http://www.vancouversun.com/health/Death+with+dignity+about+euthanasia+says+palliative+care/9801618/story.html In this article Harvey Chochinov. Here is an excerpt from an otherwise mundane article:

While palliative care — in which patients are kept comfortable, clean and pain free — is a growing part of the public conversation about death, Chochinov says Canada lacks national guidelines for the humane treatment of a dying person.

Instead, he says, the very notion of dying with dignity has been “hijacked” by the right-to-die movement.

“I think we’re going entirely in the wrong direction by saying the way to deal with our inadequacies in end-of-life care is by a euthanasia policy. I think we need to do something much more constructive, such as giving doctors good training in pain management.”

Even where doctor-assisted death is legal, a small fraction of the population requests it, he notes.

The right to die movement? When death become a right? We are all going to die. Death is a biological certainty.  Death is not a right but part of the life cycle. Like Chochinov I believe we need to have a vibrant national debate about how we deal with the end of life. I agree we need to foster a constructive discussion. Jack Kevorkian put this discussion on the front page of every newspaper in the nation in the 1990s.  Kevorkian, unknown to many young college students, was a polarizing figure--a ghoul really.  He was a polarizing influence. Who I wonder can bridge the gap between people such as myself who oppose assisted suicide and those that fiercely advocate for it in the form of state laws and the push for VSED as a viable final solution.  Is it even possible to build a bridge between two mutually antagonistic groups? When I read the rhetoric on both sides I think any sort of common ground will never be found. I hope I am wrong. I am however convinced of one thing: framing end of life, death itself, as a right and forming a right to die movement is inherently wrong.  In short, I second Chochinov's call for better medical training and pain management and more--more as in teaching physicians to be kind and compassionate to the patients they treat who are approaching the end of their life or are mere hours from death.  This is hard work. Emotional labor too few physicians are willing to engage in. Now that is subject worthy of sinking our collective teeth into.