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.

Life is Not Fair: Moving Past a Trite Old Line

At some point in life I think every human bemoans their lot in life. Some might wish they had more money. Some may desire a better body--taller, skinnier, more muscular, less or more hair, etc. Many associate the line "life is not fair" with typical teenage angst. Most parents I suspect have had their teen yell at them "I did not ask to be born" or "Life is not fair". My son never invoked the line "I did not ask to be born" but more than once stated "life is not fair".  When he told me this I look him in the eye and said one word: "correct". This was not helpful as my one word reply enraged him. The teen that stated this is now a young man about to graduate from Hofstra University. I am worried about him in an abstract sense. I worry about his ability to get a job. I worry about him dropping off the grid. I worry if life post graduation, his start of adult life, will be "fair" to him. This of course is well beyond my control. My hope is I taught him the important life lessons needed to survive and thrive. Part of me envies him--his entire life is ahead of him. Part of me is fearful: mistakes as you get older only increase in their magnitude.

Life lesson number one is life is not fair. Get over it and do so fast. I learned this lesson when I was a little boy. I vividly recall the initial stages of being morbidly sick. I was scared and in intense pain.  When my parents brought me to Columbia Presbyterian famous Babies hospital in a desperate attempt to figure out what was wrong I quickly learned life was not fair. I was in fact lucky. I had the best parents a child could wish for. I had a great doctor--Arnold Gold--who would become akin to a second father care for me. My peers were not so lucky. The vast majority died. Even as I child I could figure out which kids were not not going to live. I avoided them. I played with my army guys in bed and kept my head down. Life was not fair for sure but I was smart enough to look around and see almost all the other kids were in much worse condition than me. I also spent hours looking out the window at Broadway and the San Juan theatre across the street. Homeless and poor people abounded. All I saw at night were poor and cold people wandering the street some of whom, desperate to get warm for a few hours, paid to see a movie they did not care about. I saw physicians running in the street too. They were ghost like apparitions flowing in a blur of white and blue. I feared them.  They gave me nightmares. They were the men and women who would cause me great pain. Spinal taps, surgery, and the dreaded sub basement of the Neurological Institute where the most horrific diagnostic tests were performed. To this day if I am in an elevator and see the letters SB lit up I break out in a cold sweat and shake violently.

Life is indeed not fair. I am grateful to have had that concept drummed into me before I was ten years old. My inner child, as I recently told a friend, died long ago. Life is not fair. Got it. I thus quickly transitioned to an interest in social justice. Why were people poor? This to me was really not acceptable. Why did I live in a gorgeous house in the wealthy suburbs when I saw poor people every day.  Poverty appalled me. Lousy parents shocked me. I thought poverty was a mother that worked and was not home with a house full of kids. I learned everything I experienced and was taught was a fairy tail. Wealth is rare. Poor people abound. Life itself is never a given. I assumed like all my peers I would die. Dying was the norm. Poverty was the norm. Injustice was the norm. Pain was the norm. In fact pain was my best friend for a decade. If I could think and experience pain, severe debilitating pain, I was alive. I clung to my parents and Arnold Gold like they were a life preserver. Most of all I survived and endured. My bodily condition and deteriorating neurological condition was the price paid for life. This was not such a bad deal. I never felt sorry for myself. All I needed to do was look to my right or left and see a friend in much worse shape. Eventually I learned not to look around at all. Think Lord of the Flies.

Life is not fair. I find adults that state this baffling. This thought was reinforced today when I read Rolling Around in My Head, a wonderful blog maintained by Dave Hingsburger. See: http://davehingsburger.blogspot.com/2014/05/fair-whos-fair-would-that-be.html This morning he wrote about a person whose cancer returned and the reaction it caused. Life is not fair was invoked and then directed at Hingsburger. He was deemed unworthy of life by comparison to the person with cancer. He wrote:

I deserve death.
She deserves life.
That's how it breaks down. My fat, disabled body moves me from the category of one who has the same right to life and to love and to purpose to the category of person who is simply expendable. I can easily imagine a group of students given the exercise of choosing which one of the passengers would be thrown off the boat to save the others. I'm that guy. I had suspected all along that I'd be that guy - but now I know, for certain, that I am.
I have always been terrified by the slow crawl our society is making towards embracing the idea that it's OK to kill someone for their own good and for the good of the tribe. I am terrified even more now.

This is the life boat ethics Tom Koch wrote about in his book Thieves of Virtue. Welcome to a brave new world of bioethics perhaps more accurately described as biopolitics. The world has become a scary place for those that dare to live with a different body; a fact graphically illustrated by Sheri Fink in her book Five Days at Memorial. Of all the horrors she wrote about in the days that followed the Katrina disaster in New Orleans was the story of Emmet Everett. Mr. Everett was a Honduran born blue collar worker who had a freak spinal cord stroke. He was in the hospital awaiting colostomy surgery. He was medically stable. He did not survive Katrina because having dark skin, being paralyzed, poor, and over weight was a lethal condition. The behavior of the health care professionals involved in his care was disgraceful if not shameful and likely illegal. As my friend Steve Kuusisto asserted last month the staff at Memorial hospital were cowards. Everrett needlessly died as did many others. 

Back to Dave Hingsburger who wrote:

I imagine myself ill.
I imagine people deciding that I need, not repair but elimination. That I need medicine but not the kind that eradicates disease or illness but the kind that eradicates the 'likes of me... one person letting another know that in a fair world - my life would be taken, swapped for someone more worthy.
In a fair world.
I'd get what I deserved.
Yet people tell me, those who support the kind killing of disabled people, that I have to trust that it would be done in a fair and compassionate way.
Well, I guess, I wonder 'whose' fair would that be?
And, I guess, I wonder 'whose' compassion would that be?
I love my life. That may not be fair. But I do.

I do not need to imagine the scenario Hingsburger described. I experienced it. Many people with a disability have experienced it. Many elderly have experienced it. This makes me shudder. The work of Thadeus Pope, an appropriately respected scholar, makes me shudder. The push for assisted suicide on the part of groups such as Compassion and Choices, makes me shudder. The death of Christina Symanski who died via VSED and with family support makes me shudder. The death of Tim Bowers with 24 hours of a devastating spinal cord injury makes me shudder for he too had family support. The chill and shudders I feel this morning has transformed me back in time. I feel like a sick little boy looking at the window of a neurological ward. It is late at night. It is quiet. It is cold. I can feel the cold against the aged window pane. I look down and see a tidal wave of poverty moving about. Poor men and women shuffle along. I do not fear these people. They like me know life is not fair. I fear the blue and white apparitions that quickly flow by outside and inside the hospital. I shudder to think I knew who to be afraid of when I was 10 years old. I am still shuddering decades later. 

A Swelled Head

Two nights ago I went out to dinner in the Syracuse, NY Armory distric with two good friends--the astute Lance Manion and noted poet Stephen Kuusisto. Blind man with guide dog, crippled me in my wheelchair, and wonky bipedal man with a cain. Sound like the start of a bad joke. One of the friendly critiques I get is that I am to consistently bad. Come on I am told the world is hard but surely you can tell a good or happy story once in a while. Okay, here is my happy story, a story that made me feel far too smart for my own good.

I drove to down town Syracuse and planned to meet Lance and Steve. The snow has finally melted away and no longer plowed into handicapped parking spots--the preferred place all snow plow drivers aim for. I find a spot near the well known Irish bar Kitty Hoynes where we plan to eat. Remember this is Syracuse. The weather is nasty. Windy, about 40 f. and raining. Really hard cold rain. I navigate the chopped up streets and see a massive mess near Kitty Hoynes. Massive as in major street repair. I might get into the restaurant but will need the assistance of a few Sherpa or maybe the local fire department to carry me in. On to plan B. Given the heavy rain I look for a restaurant nearby. Only one option exists for our motley crew of three men, one guide dog, wheelchair, and cain--a pasta place. I do not like pasta but the restaurant has the room for us. Wet and hungry we are escorted to our table. We are about to chat and  when a guy at the table next to us leans over and asks me "Are you the guy that gave the brilliant talk about assisted suicide and the Walking Dead at the crip con?" Now that was a first. A stranger recognize me and deemed me brilliant. I immediately asked this man if I could get that in writing. To say his was gratifying is a giant understatement. I had great fun preparing my talk, getting made up to look like a zombie, and delivering my paper. I am a hard working man but not the most creative person. On that day I let my freak fly.

So there you have it a happy story. But please be forewarned do not ever call a scholar brilliant. My ego is healthy enough. In fact on the way home I struggled to get my swelled head into the car.

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.