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Monday, July 24, 2017

Illness as Metaphor--Hard to Kill a Bad Idea

Last week John McCain announced he had brain cancer. This is bad news for the 80 year old conservative politician. Worse, the cancer, a glioblastoma, is an aggressive and almost universally lethal. When I heard the news my head dropped a bit. I may not like McCain but this is a devastating diagnosis for any human being (especially when one is 80 years old). The odds McCain will live another five years is remote. You don't need an MD to come to this realization. You also do not need to be an MD to know immediately upon hearing the news military metaphors about McCain's "fight against cancer" would abound. Within hours, Twitter lit up with well wishes. When I read about what a fighter McCain is and that he and he alone was the one man that could beat the cancer I did my best to stop reading. Using cancer as a metaphor was debunked long ago by Susan Sontag in her searing memoir Illness as a Metaphor. I read Sontag's book in college. It was a transformative experience. I had just been paralyzed and despised my stigmatized identity. I seethed inside with a burning rage. After a decade of being morbidly sick as a child I was for the first time medically stable and living in a dorm at Hofstra University. In an effort to understand my fall from grace, I read. I was a voracious reader in search of answers: why did my existence seem to be an affront to others? Why did society freely and openly discriminate against people with a disability. It made no sense to me. Enter Susan Sontag and her complete and utter rejection of metaphor in terms of illness. It did not take a huge leap in logic and apply this to disability. The below quote is one that I underlined and have likely read thousands of times. If pushed I think I could paraphrase this from memory:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe not what it’s really like to emigrate to the kingdom of the ill and to live there, but the punitive or sentimental fantasies concocted about that situation; not real geography but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry.

I know all about the "night side of life". I have resided in the kingdom of the ill and I was liberated from it long ago. I was also liberated and freed intellectually by Sontag and others. My liberation was the forceful rejection of the stigma associated with disability. As a young man I was enthralled--Sontag eloquently rejected the metaphors associated with cancer and illness in general. Her book was short and devastating blow to the daily bigotry I encountered. In my mind, she destroyed all the demeaning metaphors I had heard as a morbidly sick child. All those terrible and destructive metaphors came to mind when I read the flood of good will messages directed at McCain. I had heard them used to describe me as a boy. Even then I knew they were wrong. McCain is no ordinary man. He is a fighter. He is tough. Cancer does not know McCain--he cannot be defeated. He is a hero! Cancer can't beat McCain. Bull. Cancer does and will "beat" people. Cancer kills and that is a fact. People fear cancer. In much the same way, people fear disability. Christopher Reeve and his desire for cure is embraced and he is lauded over as the symbol of American spirit and the will to fight for a cure to paralysis. I and others who advocate for equal access to health care, education, employment, housing and mass transit are despised. As we have seen nation wide, ADAPT protests result in arrest and people with a disability are carried out of building by police screaming about Medicare and liberty. These are the lurid images and remind me of the bad old days when I too put my body on line for equal rights.

Resistance and liberty are worth fighting for. This fight is never about one person. It is not about me and the long odds I supposedly overcame to reach middle age. The fight against cancer is not about McCain's toughness or character. He will not be loser when he dies. The metaphors Sontag rejected remain. These metaphors are deadly because they obscure the real issues. What is the real issue? Access to health care and the built in and deeply ingrained ableism that is ever present in the fabric of society. I am not worried in the least about McCain. He will get world class health care. Almost all the mainstream press coverage ignores the harsh realities most with a glioblastoma will encounter. Being sick in America is a job. It requires a full time effort to insure bills get paid. Being ill requires health insurance. Without insurance one's experience and chances of survival become very different from what McCain can expect. In the Atlantic, James Hablin wrote:

The war cries omit the central fact that if McCain does live another five years, against long odds, the most significant factors in optimizing his chances will have been his access to the best available medical care—and to a supportive family, and to having his basic needs met without a second thought. McCain’s survival would be because he is spared the fights that many cancer patients are not—not the 28 million Americans without health insurance, and the 43,537,800 living in poverty. Link: https://www.theatlantic.com/health/archive/2017/07/acceptance/534348/

I can attest to the fact survival has nothing to do with personal integrity or moral character. I survived and become the man I am because my parents fought and insured I got the very best medical care humanly possible. I was lucky too. My parents happened to live near New York City at the exact same time pediatric neurology as a field of specialization was created. I regularly interacted with the founders of pediatric neurology who oversaw my care. I had a supporting cast of health care workers at a time when little could be done and in this absence received empathetic care. I am alive because of happenstance, privilege, and luck. I was not one iota different than all the morbidly sick children I knew that died.

The language associated with disability and cancer matter. The national discussion about McCain's character matters. It is a smoke screen that makes others, typical others who are not sick, feel better. I am not breaking any new ground here. What I am is a very small part of social, political, and intellectual dissent. As I often joke when attending academic conference, I am the cranky guy in the back who asks the hard questions. There is a reason some groan when I show up at a meeting. It is all too easy to use metaphors and intellectualize cancer and disability. I get it--I am a scholar and write for other scholars. This work is intellectually satisfying. Yet at night I lose sleep over the fact I feat academic discourse obscures the gritty reality of what people with a disability experience day in and day out. I have read many challenging books in disability studies, bioethics, philosophy, and a host of fields in the social sciences. When I am done reading I often wonder what good are these challenging books and essays when poverty abounds within the land of disability. What is the point of disability studies if the unemployment rate of people with disabilities has not changed in nearly 30 years? What is the point of bioethics if people with a disability still encounter social and physical barriers when trying to access health care? What is the point of writing about access to mass transportation if the bus drivers I have encountered in Denver don't like to use tie downs for my wheelchair and put my safety at risk?

In recent weeks I have struggled with the idea of futility. Everything seems futile. The fight to protect Medicaid. Charlie Gard and his parents efforts to bring him to the United States for futile medical treatment. The fact only 15% of dying Americans ever get to hospice care. The GOP effort to repeal and replace the Affordable Care Act. The passage of assisted suicide legislation. The presence of Donald Trump and his continued effort to effectively appeal to hatred and ignorance. The world seems to be a bleak place. And yet when I am a ready to pack it all in I see great beauty in the world. Just last night I went to the Cherry Creek Park near my home. Over 1.7 million people a year visit this 4,200 acre park near Denver. I live in big sky country and last night was spectacular.














Friday, July 21, 2017

Mundane Observations About Living in Denver

Yesterday I wrote about having a heart attack and how vulnerable I was hospitalized as a man with a disability. Since I was released from Yale New Haven Hospital and my lease in Syracuse expired I spent a few days saying final goodbyes. Leaving the city of Syracuse was easy. Leaving the close friendships I had formed was not. Driving from Syracuse to Denver in three days was a blast. I love long cross country trips. I am fascinated by interstate culture and the vastness of this nation. If you ever find yourself in rural Nebraska I highly recommend visiting Car Henge in Alliance. If in Iowa, the Iowa Museum of Aviation is another trip worth your time and energy. This says nothing of Iowa City, a picturesque and vibrant college town. 

One may ask, rightfully so, what have I changed in my life post heart attack. The answer is a lot. I have had to abandon some real food and drink loves. For those that know me, Coke is not a soft drink but rather “Holy Water”.  No more Coke for me. Caffeine is not good for the heat. This is obvious as when I do have the random cup of tea I can feel the beat of my heart change. This is an unpleasant sensation. No more hard alcohol. No Sailor Jerry rum. No sailing at night as I watch a mindlessly bad movies. Sailor Jerry also just happened to go hand in hand with Coke and pretzels. Of these three staples—coke, rum and pretzels--rum was easiest to give up. I never cared about the booze but rather the flavor when rum and Coke were mixed together. I do have a Coke on occasion (at most once a week). I even tried a Coke Zero and a Diet Coke. I do drink very small amounts of alcohol. It is not the alcohol I am drawn to but the ritual. I enjoy a drink and salty snack at the end of the day. I now have one or two small glasses of port before bed time. I do mean small as I follow the American Heart Association and Heart Rythym Society Guidelines to the letter. The real struggle has been the elimination of salty snacks. Growing up one of many nicknames I had was “pretzel peace”. I love pretzels. I love salty foods too. They are absent from my diet. The impact of lower salt and little alcohol has had a profound impact on my body. I no longer have chronic edema in my legs. My knees look big and my legs appear to be spindly. This makes transfers of all kinds much easier. 

Other changes are related to living at altitude. I use sun screen daily.  The sun in Denver seems ever present and is intense and hot. Without sun screen I would become lobster red. I am also drinking up a storm. I have given up my penchant of living on the edge of dehydration. I drink water all day long. I use cream on my skin many times a day. Denver air is dry and arid. The humidity level is very low. Moisture is sucked out of my body in a way that is startling and vastly different from life lived at sea level.  


The move to Denver has been most interesting from a cultural perspective. Downtown Denver is awesome. I am minutes away from the light rail line station near my apartment and a mere 35 minutes from the downtown. The rail system as near as I can tell is 100% accessible. The elevators are as clean as can be expected and unlike a city like Boston and the gritty Northeast in general homeless men do not use the elevator to get high or use it as a toilet.  The busses are merely okay. The drivers stop but seem to have an aversion to using the tie downs for my wheelchair. I can only assume they are accustom to those who use large heavy and power chairs. I have been repeatedly told "You are only going a few stops. You don't need to be tied down." This is great in theory but if the bus is in an accident I will become a projectile. What has struck me the most about the Denver area is the number of people with visible disabilities out and about. I see blind men and women daily. Typically they form a  guide dog team but I have observed many cain users as well. I find the dog human partnership in this regard fascinating in part because of the intense bond formed. What I find of great relief is not being alone. I see people using wheelchairs daily. Earlier this week I got onto the train at Union Station with another wheelchair user. She was a young woman in a power chair. She could not have been more typical--tight black pants and bright yellow top with a snarky line. What set her aside in my mind was the fact she was non verbal and used an iPad to communicate. I silently thought to myself this is going to be a disaster when the train operator wanted to know her destination. Without a hitch, he looked down at the iPad and established her destination. This was strikingly ordinary and uplifting. Maybe being green is not so hard.

What I have not done is explore too much. My main focus has been on unpacking. To this end, every box has been emptied. As a neat-nick living with boxes scattered everywhere and a cluttered kitchen is more than I can tolerate. Everything has been put away but don't ask where it is. In the immediate future I plan to explore the medical marijuana industry. Medical marijuana is legal and abounds in Colorado. The Denver Post has an entire section on cannabist culture. Sadly, it appears cardiologists take a dim view of medical marijuana. I asked about any heart related benefits of medical marijuana and the question was not well received. As a model of patient compliance I quickly let matter drop. 

I will readily admit I am very concerned about the future. My health insurance status remains unclear. I cannot move forward without health insurance. It is priority one as no one can afford heart related health care without vigorous insurance. Forget about invasive tests, medications alone can bankrupt a person. Next generation blood thinners represent a huge advance in health care but the cost is outrageous. A seven day supply of Eliquis costs well over $100. For the time being I can afford this medication thanks to the coupons I was given. Yet when the coupons expire I have no idea what will happen. What I do know is that I am at long last about to burst forth with a series of posts. I also have begun reworking long term projects that have languished for a while. If anything positive comes from a heart attack it is the knowledge that life is far too short. It is time to get things done. That time is now.

Thursday, July 20, 2017

Heart Attack, Vulnerability and Disability Based Bias

Since I started my blog years ago, my goal has been to reach as wide an audience as humanly possible. To this end I have succeeded beyond what I thought was possible. As of today, over a million people have read my various posts. This gives me great satisfaction as this blog is a labor of love. I have consistently tried to put up two to four posts per month. In this regard, I have not been as successful as I had hoped. Recently, I have been particularly silent and for good reason.

I have been sick. I have not been sick in a routine manner. As is my life long penchant, when I get sick I do it in a big way. In April I developed serious cardiac issues that resulted in an Emergency Room visit. I thought this was an isolated incident. I had developed a very common form of arrhythmia called Atrial Fibrillation. I was prescribed medication and felt significantly better until June. My cardiac issues worsened suddenly and significantly. No way to mince words here--I had a serious heart attack. My heart has been damaged. The extent of the damage is unknown. I could have significant coronary disease or not. Regardless, there is no way around the fact I will be seeing a cardiologist for the rest of my life since I remain in heart failure. While this sounds terrible (and it is) millions of people are walking around with heart disease. Reading the physician reports about my heart is sobering.

Perfusion imaging was abnormal showing a large sized, severe intensity, fixed perfusion defect in the basal to apical and inferolateral walls consistent with a scar. Left ventricle ejection fraction was severely depressed with inferior akinesia"

Mildly increased left ventricle cavity size. Severely decreased left ventricle systolic function. Mild concentric left ventricular hypertrophy... Severe global hypokenesis. 

To comprehend the above, I have gotten a crash course on heart structure and arrhythmia. As noted above, Atrial fibrillation is very common. It is unlikely I will suddenly drop dead. It is also highly unlikely I will get out of a fib without some sort of invasive procedure. I am considering cardiac catheterization and cardioversion. Ah, consider. Based on my most recent visit with the cardiologist, the word consider is misleading. I really have no choice. I cannot remain in a fib. Time will become an issue. Action, invasive action, is needed in an effort to return my heart to normal function. Ah, that word--normal.  I have felt anything but normal accessing health care. I have consistently been patient profiled. I have been profiled in a way that has put my health at risk. I have felt threatened and expressed my concerns to health care professionals. The results have been mixed at best. For example, when admitted to Yale New Haven hospital I was instantly identified as a "fall risk". A nurse put a bright yellow tag on my wrist with black type "FALL RISK". Two bright yellow socks were tied at the foot of my bed that also emphatically stated "FALL RISK". Not one health care professional asked me when was the last time I had fallen. No one asked me anything about falling. When asked why I was identified as a fall risk I was told because I use a wheelchair. Anyone individual who uses a wheelchair is deemed a fall risk. The fact I have not fallen out of my wheelchair in years was not relevant. The fact the yellow arm band "FALL RISK" kept getting caught in my spokes as I moved or transferred to my bed were dismissed. I was told this is standard policy. Concerned about falling during a transfer, I cut off the yellow "FALL RISK" arm band and removed the yellow socks from my bed. This was merely the tip of a very large disability based bias that was ever present.

I was repeatedly told "we have never had a paralyzed patient like you" or "no one has ever asked such questions." My questions were not obscure. What sort of access is present on the cardiac floor? Where is a bathroom I can access? Will diagnostic equipment be accessible? What became evident was not shocking--no protocol existed for people like me. None. I was singularly unique--a fact I was reminded of many times a day. The first room I was admitted to was grossly inaccessible in every way humanly possible. I could barely get to the sink and the toilet and shower were not remotely accessible. My request for air fluidized bed upon admission was met with a simple no. We don't have beds like that. My risk for a bed sore went up exponentially. The academic part of my thinking was not surprised. I know the grim facts about disability and health care. Let me give a few bullet points.

People with a disability receive less routine medical care.

People with disabilities receive less cancer screening, dental care, flu vaccines and pain medication.

People with a disability cardiovascular risks are increased due to obesity and hypertension.

People with a disability are twice as likely not to access medical care due to cost.

People with a disability are three times more likely to have difficulty finding a physical willing to accommodate their needs.

The barriers I encountered to were not due to uncaring health care professionals. In fact, I was admitted to a world class hospital facility--Yale New Haven Hospital. Yes, I was in a teaching hospital and an Ivy League one at that. Yet I was about to get in education in alienation. It did not take me long after admission to realize I was not going to get adequate care. Once sent to the cardiac floor, put in a standard medical bed, deemed a fall risk, and my request for an adequate bed dismissed I did not see a physician for 12 hours. At 5AM I freaked out. I knew I needed help. I was teaching at Yale's bioethics summer intensive. Better yet in terms of irony, the night before I was admitted I had met with the hospital ethics committee and talked about the Ashley Treatment. I knew some powerful people who would help.

In the pre dawn hours I realized I was in real trouble. I was vulnerable. I was at risk. I had no family who would be willing to help. I was completely alone. In desperation I texted the director of the Yale bioethics program. Please help! Calls were made on my behalf and before the morning was over my care took a turn for the better. A steady stream of people were in and out of my room. Not one but three people were on the search for an appropriate bed and accessible patient room. It would be very easy of me to hang Yale hospital out to dry. The facility is grossly inaccessible. This did surprise but the inertia created by the repeated observation "this is a very old building and hospital" did. Despite the great amount of work on my behalf, nothing has changed to the infrastructure at Yale as a result of my visit. Yale remains one of the most inhospitable campuses for wheelchair users I have ever visited. If it is bad for me as a visiting scholar, I shudder at what under graduates must experience.

The gritty reality I faced at Yale is a nation wide shame and civil rights violation that has cost the lives of an untold number of people. The health care system is not prepared to deal with people with a disability who get sick. Transportation within and to the hospital is problematic. Accessible medical equipment is inadequate or utterly absent. Safe methods of transfer are unknown. Stigma abounds. Wherever a patient such as myself with a disability went problems abounded. No one knew what to do. I was a problem. Accessible exam tables were absent. Accessible bathrooms were non existent. It took dedicated and driven health care professionals to find a patient room with an accessible bathroom. The only reason this effort took place was because word got out I was, gasp, a visiting scholar. Upon admission I was assumed to be just another wheelchair user who had no life, no job, no family. Friends and fellow scholars visited and calls were made on my behalf. Without the efforts of unnamed friends and colleagues my treatment would have been substandard--think comfort care.

I have been badly shaken and my world has been turned upside down. I am fearful for my life. This fear is not based on concern for my heart though I am deeply worried. My fear is the lack of care I will receive. My fear is the negative assumptions made by health care professionals and the complete lack of access within medical facilities. My fear is based on the ignorance associated with my disabled body and the lack of any protocol in place to insure a hospitalization is safe. I ended up leaving Yale without any skin breakdowns but that would have happened had I not been able to use an appropriate bed. A bed I was told was not available upon admission.

I think my future existence can go one of two ways--I have significant heart disease and will continue to get worse. Significant surgery might be needed and my future is limited. At the opposite side of the spectrum, there is a chance this is an isolated incident. Medications will be effective in both the short and long term. I will one way or another get back into a good heart rhythm and look back periodically and think I dodged serious trouble. Of course, there is a middle ground between these polar opposites. Much will be learned once my health insurance kicks in. As for now, I remain uninsured. That will change soon now that I am a resident of the fine state of Colorado. Yes, in the midst of teaching and having a heart attack I moved to the Denver area. New York to Denver was a long drive though there were highlights such a Car Henge in Alliance Nebraska and the Iowa Museum of Aviation. This move is a dream come true. I have always wanted to live out west and now I do. I love the Denver rail system and am struck that I am no longer the one wheelchair user where I go. Better yet, I am ready to write after my long silence so get ready for many new posts in the coming days and weeks.

Sunday, June 11, 2017

Times Are a Changing ?

What one recalls from raising a child is interesting. My son, now an adult, have reminisced more than usual in the last two months. What struck me is that we have many shared cherished memories. What we recall the most are the numerous trips we took together when he was a child. We repeatedly visited some cities. Baltimore was his starter city. It was just four hours from our house and we loved the Inner Harbor area and Camden Yards where the Orioles play baseball. We spent much time in Wyoming in Yellowstone National Park and Grand Teton National Park. Boston was another city we enjoyed as Old Ironsides was a fascinating as were the many wonderful. Washington DC also holds many memories. One memory dominates my thoughts of Washington DC. Dominate is not the right word. One memory plagues me over a decade later.

In 2004 I took my son to Washington DC in the spring. We had one destination in mind--the newly opened Steven V. Udvar-Hazy Center. As aviation enthusiasts, we were excited. My son wanted to get into a fight stimulator and see military aircraft while I wanted to look at the Space Shuttle and a host of other planes. The Udvar-Hazy center is massive.  For the first time in history the Air and Space Museum had the space to display the finest and most historically important aircraft. We stayed near the Mall and planned to take the Smithsonian Shuttle bus to the new center near Dulles Airport. The first day the wheelchair lift work though the drivers to and fro were obviously perplexed and had no clue how to use the lift. The second day we tried to use the lift and things went wrong. It was obvious the wheelchair lift was not going to work. The bus driver was being pressured to get the show on the road. People on the bus were eager to get moving. I have written about what took place in the Ragged Edge. Link: http://www.raggededgemagazine.com/life/smithsonianbus.html The bottom line is I crawled up the front steps of the bus and onto the nearest seat. I am haunted by this. My son and I still talk about what happened. We wax and wane. Sometimes he feels guilty. He just wanted to go to the museum. Other times he thinks I made a mistake. I vacillate to this day about what I did. Of one thing I am certain. Not a single person on that bus gave a damn that I had to crawl on the bus or be left behind with my son. In this regard, my son and I are in total agreement. No one on that bus cared about my right to get on the bus.

Fast forward to last Friday. I am settled in New Haven and over the course of the last eleven days have enjoyed my time. I am tremendously impressed with Yale's Sherwin B. Nuland Summer Intensive in Bioethics. This is not a surprise as I have sent two former Syracuse honors students to the program. This summer I am a seminar leader and ave enjoyed my time with my fellow seminar leaders and students. I am particularly drawn to the fact 58% of student are from abroad. The director of the summer program, Lori Bruce, has been proactive in insuring the program move forward as smoothly as humanly possible. The program has many moving parts and Lori Bruce has done a masterful job. She has bent over backwards to insure access issues are not a problem--or as least problematic as one can hope on the Yale campus where wheelchair access remains a challenge. I assumed I would be forced to stay in the dorms as an accessible sublet in downtown New Haven is akin to a needle in a haystack. The dynamic Bruce actually found an accessible sublet with air-conditioning within a mile of where we would be meeting over the month of June. I was not just impressed but astounded.

On Friday we were taking a trip to the Hastings Center in Garrison, New York about two hours away. Bruce had arranged for two coach busses for transportation. I was deeply skeptical. My experience with coach busses is overwhelmingly negative--hence the story above. Coach busses have lifts but I would estimate that when I try and use the wheelchair lift located in the back it does not work 95% of the time. The norm is for the bus driver to attempt to get the lift to work and if it is not operational within 10 minutes I am left by the curb side. Bruce made dozens of phone calls during the week to the bus company. Pressure was brought to bear. The bus we expected would have a working lift. My fingers were crossed but I expected trouble. Trouble we got. Two coach busses appeared on time. The wheelchair lift on the first bus did not work. The wheelchair lift on the second bus did not work. This is exactly what I expected in spite of Bruce's efforts.



Thirty minutes pass. An hour passes. The lift on both busses are not working. The driver is upset. There is much milling about. Bruce spent much time on the phone. The bus drivers are consulted repeatedly. They assure us the lift was cycled the night before and just hours before the bus left the depot. After and hour has passed, I suggested to Bruce the busses leave without me. I have been to the Hastings Center. It would be wonderful to reconnect with the research scholars I know but the trip is not imperative. I get an absolutely no from Bruce. We are all going--end of discussion. Based on Bruce's body posture, stern look, and dedication to insuring the program be as inclusive as possible I knew this is not a subject of discussion. I told Bruce I deeply appreciate the solidarity but we have nearly 70 people on two busses many of whom have never been to the Hastings Center a leading bioethics think tank. I was willing to fall on my proverbial sword. However, I did wonder is this 2004 all over again? Will I watch two busses depart while I am left at the curb? I am not crawling on the bus--that is a certainty. If this is an all or nothing decision I have a hard time believing 70 other people are willing to miss out on an opportunity of this type. I wonder will people hate me or will they not care one iota. Bruce and I had a brutally direct conversation. She told me I had the unanimous support of every person on the bus. I was nothing short of stunned. She meant it as did others. I really did have the support of students and fellow seminar leaders. Without question, this is a first. Never has anything like this ever happened in my life.

Here I am forced to depart from my usual Bad Cripple and undermine my moniker. There is no social outrage. Instead, I have support. A lesson in ethics took place. Many people throughout the 90 minutes expressed disbelief. How could this happen? This is outrageous. More than once I simply said, "welcome to my life" or "this is the norm in the land of disability". Nothing is ever simple and social and physical isolation remain the norm. As I feel asleep the night we got back I thought of the hundreds of planes, trains and busses I have been unable to get on and off with a modicum of ease and dignity. Never had others expressed a hint of solidarity. Not once. I will remember the Smithsonian Museum bus shuttle incident for the rest of my life. I will also remember the solidarity I shared with 70 other people. Quite the opposite experience. And perhaps it is proof that times have changed. Maybe there is hope. Maybe I will live long enough to experience a social and physical environment that bus welcomes my existence.

Thursday, May 25, 2017

Every Day Ableism, Ignorance and Hate

Tuesday was not my day. I went out to have lunch and do errands. Simple. Not really. I tried to exit my building and a large moving van blocked the ramp and side walk. I wait 15 minutes for the movers to return. They were nice and apologetic. I walk to the nearest corner. Each and every curb cut is blocked. If I want to get to where I am going I will need to navigate in the street. This is a risk and in the back of my mind I recall a wheelchair user was hit by a car and killed not far from where I live. The risk I tell myself is manageable. More blocked curb cuts await. I am forced to go three blocks out of my way. It has taken me over 30 minutes to go what should have taken less than 5 minutes. Disability is a time sucker of epic proportions.

It is the summer and without students on campus and multiple road closures, many bus routes are detoured. No one quite knows where the bus will be on a given day. Not to worry. I have memorized the route. I walk the bus route itself and eventually a bus will come by. Of course this works when the weather cooperates. Yesterday was one of those cooperating days. Upon meeting a friend for lunch yet another curb cut was blocked. I enter the street yet again and ask the men in a huge garbage truck to move.

After lunch, I meandered my way home. Among my errands was a stop at the pharmacy. Three blocks after I went to the pharmacy my urban radar went off. A hundred feet later I know I am being stalked. I can feel the presence of another person who is failing at being stealthy. Next thing I know out of the corner of my eye a hand comes over my shoulder to snatch the plastic bag off my lap. Luckily for me the hand comes over my right shoulder. As I see the hand I spin very hard to my right and take my forearm and slam down on the stalkers elbow as hard as humanly possible. Two things happen at once. The frame of my wheelchair hits the man in the shins--that hurt for sure. At the same time my forearm forcefully connects with the man's elbow. The man looks like a deer with his head stuck in the headlights. He is shocked. I am not the easy mark he assumed I was. I am quite pleased with myself. The man yelped and ran away down a nearby ally. Unbeknownst to me a building security guard witnessed what took place. He was impressed. We chatted a few minutes about crime in Syracuse and we joked that guy is never going to try and steal from a wheelchair user again. After a moment of silence we agree crime and drug addiction is rampant in the city. The man likely followed me from the drug store. I am not sure if I am sad or angry or simply vulnerable. 

Nearing home I stop in the shade near the fountain in Clinton Square. It is a pleasant place to stop. As I attempt to find my inner Zen, a well dressed man comes up to me. My radar is yet again going going off. He said "I know the handicapped are poor. You must be poor. I am going to buy you food. What do you want to eat"? My first thought is he thinks I am a homeless guy. But no. I look pretty good today. Indeed, I have made a concerted effort in the last few weeks to look neat and clean. I am essentially prepping for Yale. Being the worst dressed professor at Syracuse is one thing but quite different at Yale. Not a chance I look like a homeless person. I replied in a non confrontational manner. "No thanks. Leave me alone". The tone of my voice I think made it clear I wanted to be left alone. Mercifully the man did as requested. 

Tuesday was atypical. However, street harassment is routine when I have the nerve to walk around the city alone. What I find unusual is that routine harassment has taken a decidedly nasty turn in recent months. This happens when the American people elect a demagogue to the presidency. Each day brings one shocking story after another. A war is being waged and like other vulnerable people I am in the cross hairs. When Trump was elected I instantly thought those that voted for him were filled with hate and ignorance. My views have not change one iota. Half the population of this nation have embraced a draconian view of the world. That world does not include people with a disability, the poor, elderly, and any person that does not conform to a very narrow norm. That norm is predicated on one being an employed tax paying member of society. If you need social supports and an education well that is trouble for we are entering an era of ruthlessness that is as bald as it is ugly. Trump's budget is without question ruthless. Link: https://thinkprogress.org/trump-budget-disabled-people-f2a4708074f0 The only solace I find is that many others share my views. One person in particular is on an impressive roll writing about the current political climate. The always fascinating Lance Mannion wrote: 

They hate us. All of us. The budget makes that plain. Before it’s a financial or policy document, it’s a manifesto. A declaration in numbers of how much they hate us.
They hate the poor, that's obvious. They hate and despise and fear the poor, especially if they're brown. But they hate the sick too. And the old, at least everyone irresponsible enough to get old without having put together a $500,000 portfolio. They hate children. Other people's children, of course. They dote on and spoil their own. But other people's children are coddled and raised to think life owes them so those kids need to be taught a lesson. They hate everybody who isn't rich because we should be rich. That's what life is for. To make money. Lots of it. And if you didn't do that you've wasted your life. If you didn't do it it's a sign you didn't try, you didn't work or work hard enough. It's a sign of your bad character and moral failure. And that's what we all are in their eyes, moral failures who expect them to bail them out when our bad character gets us in trouble. Even if we aren't constantly coming to them with our hand out in one way, we're doing it in another, demanding we be paid more than we're worth, demanding benefits we haven't earned or deserved.
We're all thieves and parasites, moral failures, degenerates and defectives. Sinners! Sinners against God and Nature and we must be punished. Link: http://lancemannion.typepad.com/lance_mannion/2017/05/they-hate-us.html
Unimaginable. That word springs to mind on a daily basis. I fear I am the Mad Hatter. Lewis Carroll never used those exact words in Alice's Adventures in Wonderland. The phrase used, "mad as a hatter" predated Carroll's writing. The popular image however seems apt. 


I feel as though the world has spun off its axis and nothing makes sense. I hear words and cannot fathom how a human being can be so twisted. Trump's budget directed recently stated: 
We are never going to measure compassion by the number of programs or the number of people on those programs...We are going to measure compassion... by the number of people we help get off those programs.
Paging Ayn Rand! Selfishness is now a revered trait. How dare the elderly need care. How dare the paralyzed need a wheelchair. How dare the deaf expect ALS interpreters at any public event. How dare the poor be hungry. How dare those addicted to opiates seek treatment for addiction. How dare the poor want an education. How dare people with mental illness seek care. I do believe it is time for a tear party. Nothing else makes sense. 

Monday, May 22, 2017

The Count Down and Goodbyes Begin

As is my custom, I was up in the pre dawn hours. This is my last week in Syracuse. The last three years have been good but it is painfully obvious the time has come to move on. I cannot imagine ever returning to Syracuse. I have met and become friends with a small cadre of friends who truth be told are family.  Life time relationships have been forged and they will always be cherished. Via long distance, my Syracuse family will be nurtured and loved. These people I will miss to the depths of my soul.

Syracuse has served as a perfect way station. With my parents both deceased as well as two of my closest siblings there is no reason for me to live in New York. Indeed, there is no need for me to live east of the the Mississippi River. I am fulfilling my life long dream of moving west. I will not miss much. Coming of age as an adult and scholar in New York City will remain a foundational part of life. Columbia University was difficult and rewarding. Earning my PhD and seeing my son born were highlights of my life. I had some horrific lows. Divorce. The death of my father and years later my mother. A massive life threatening wound and a year spent in a Clinton bed utterly dependent upon my family--especially my sister Ellen who was the most generous giving person. I would not be alive if not for her. And growing up. Oh my I went through the medical mill and thanks to Arnold P. Gold I reached adulthood despite long odds.

Today begins the process of moving. It has been a gut wrenching morning. I have not moved much in my life because I find moving difficult. I knew I would shed tears today. I am a neat person but dog hair gets everywhere. I know this all too well as ten years after my first labrador Burt died I found some of his hair in the back of a closet when I left Katonah. I knew I would find much of Kate's hair today. I found a lot. I cried a lot. I vacuumed a lot. The overcast gloom and rain fit the occasion. I am doing my best to not move a single hair of hers. I have applied for a service dog and it is time to look forward. To quote Satchel Paige "Don't look back. Something might be gaining on you". I have no interest in looking back. Looking forward is exciting. I will of the first time since my son was born live in a modern and exciting city. No more suburban boredom. No gritty Syracuse. Though I should note I will miss parts of Syracuse. The Onondaga Creek Week, Grey Rock Farm, my old view of Cazenovia Lake, and the delicious local kielbasa and bacon.

This move is all about the future--a future that is completely unknown. I am especially curious about what it will be like to live in the West. Will do gooders harass me? Will people continue to congratulate me for the ordinary? You know, the stranger that tell me I am inspiring because I can drive. Will people ask me why I am traveling alone? Is Denver mass transit really as accessible as I have been led to believe? Will I forsake the New York Mets for the Colorado Rockies? The very idea seems preposterous. I know for sure I will remain a New York Ranger fan. It helps that the Avalanche are truly terrible and will be for a while. Will I take all the drives I am dreaming of from Denver? I am only eight hours from Signal Mountain Lodge, Grand Teton National Park, and the Chapel of the Transfiguration.  To know I live near the only place in my life I have found solace and spiritual belief brings me a sense of serenity that has been absent most of my life. It is my hope that I will thrive as never before surrounded by the beauty and majestic mountains of the west. As a life long pessimist, it feels decidedly strange to be brimming with optimism.

Friday, May 19, 2017

Moving Up and West

My Syracuse days are winding down. Working at the University was initially wonderful but as time progressed much changed. Over the last few years the university hired multiple people to disability related posts and not a single person with a disability was hired. This may sound like sour grapes but this is far from the case. Syracuse like every university in the nation seems to be averse to hiring scholars with a disability. Since I began teaching in 1992 as a freshly minted Columbia PhD I have taught continuously as various universities. At no point in my career have I had a fellow faculty member who also used a wheelchair. At the end of spring semester this month I asked, as I have every year since 1992, if the students had ever had a professor that used a wheelchair. Not once has a student answered yes. The lack of representation of academics with a disability is a national problem. In no way am I singling out Syracuse. Every university is at fault. Every administration, faculty, and university employee is part of the problem. Imagine if a university had no diversity. None. Imagine if a university about the size of Syracuse (20,000 students) had no employee that were black. This would be front page news. Outrage would ensue. When it comes to disability out of sight is out of mind. We cripples are simply not professorial material. Worse, the bar is set low--the bar for cripples is subterranean. The ordinary is a remarkable achievement. I am regularly praised for my ability to drive. I am praised for being employed, having a son, shopping for food etc. The ordinary for me is perceived as a major accomplishment. This is as dehumanizing as it sounds.

The hard part of always being the sole person with a disability present in academia is the overwhelming sense of loneliness and isolation. As I get ready for my big move out west I wonder if I will encounter the same barriers I have been forced to endure in the Northeastern United States. Denver is a far cry from gritty Syracuse. Denver is a thriving cosmopolitan city. It was also the epicenter of the successful fight to ride mass transit buses. It was, as I like to note, the first city that fell. No more inaccessible busses would be put into service in major cities. Today, all busses in Denver and every light rail station is wheelchair accessible. Finding an apartment was easy and stress free. Other cities followed Denver: New York, Boston, San Francisco, Seattle etc. The impact this had on the lives of millions of people who use wheelchairs was profound. When I move to Denver I can get on any city bus at any time. I can get in any light rail station. They are all accessible. Is Denver perfect? Of course not. Mass transit services the masses and problems exist on all mass transit systems. The point here is the impact easily accessible mass transit has on quality of life for wheelchair users is profound. While I am not a fan, Zach Anner made the following seven minute video that highlights how problematic NYC remains in terms of the subway system.


This video hit home as I just learned the Yale University fixed bus route is 100% inaccessible. As I mentioned in an earlier post, this summer I am teaching at Yale University Sherwin B. Nuland Summer Institute in Bioethics. To date, my experience has been uniformly positive. The director of the program has been pro active and welcoming. She has put in a great deal of effort to insure I will not encounter any access issue. At no point have I been treated as though I am a problem and represent an unnecessary amount of work. This has been a breath of fresh air when compared to other universities and academic organizations. Thus I was stunned when I went to the website to.yale.edu in order to figure out the bus system. I found an inner city sublet for June based on the assumption the bus system was accessible. At to.yale.edu I read the following

Yale Transit operates a Special Services Van which transports members of the Yale community who are permanently or temporarily disabled. The service runs 24 hours a day Monday through Friday and on Saturday and Sunday from 6:00 p.m. to 7:30 a.m. Passengers are picked up upon request and transported within the boundaries.

Special services van? This term is beyond antiquated and misleading. This is a classic example of disability based segregation. Worse, at to.yale.edu two links are provided--a student request form and employee request form for transportation. Both links are broken. A number for "special services van dispatch" is also provided. Disability history amply demonstrates that separate such special service transportation is routinely terrible. All para transit systems provide bad service. Access-a-Ride in NYC  is mocked as being  Distress-a-Ride. Exceptions likely exist but based on experience--one bad experience after another --I am not optimistic. Perhaps I am wrong but the dead links are a bad sign. Link rot here is an omen and not a good one.

I shake my head in wonder. I am going to an Ivy League Institution and have been treated with the utmost respect. I could not be more excited to teach in the summer intensive bioethics program. Yet this same institution uses language on its website that is deeply objectionable. Again, maybe the "special services van" actually provides adequate service. I find it hard to imagine Yale students and employees have not complained about the objectionable language and dead links. Based on prior experience with special service vans, I an only assume service is substandard or utterly useless. I do know I am being segregated from others. There is no doubt of that. So yet again I am reminded of the hidden labor associated with disability. Want to get on a bus? Follow a dead link or call a special number and get an answering machine. Want to watch a hockey game? Call ticket master special number for special guests. Leave a message on an answering machine and hope you get a call back within 48 to 72 hours. Want to spontaneously attend an event? You are out of luck. As I have thought about the special services van I am reminded of my son. He is often asked what was it like having a father who uses a wheelchair. His answer always involves time. Disability land sucks up time like a world class vacuum machine. I cannot begin to estimate the amount of time I am forced to wait. I wait for busses, elevators, wheelchair lifts, accessible bathroom stalls occupied by bipeds, for guards who have a special key to unlock the obscure inconvenient entrance and so on.

At a practical level I can avoid the special van. I most likely will do so out of principal. Typically I refuse to be segregated in a way that is obviously discriminatory. What this means is I will walk to work. It is not along walk from the sublet I have found--it is just a mile. Luckily it is the summer and weather should not be a major variable. What I do know is I just lost 40 minutes of my day. This might not seem too bad. My deep objection may seem petty to some, perhaps to many. But think about it. Twenty-six years post ADA mass transit remains difficult to access for people with a disability. Like Syracuse, New Haven is a gritty city. I am looking forward to leaving the gritty industrial Northeast for new cities such as Denver that long ago made a commitment to wheelchair access and to a degree birthed a nationwide movement for inclusion. Indeed, my first trip on the Denver mass transit system will be to Colfax and Broadway where there is a memorial to the so called "Gang of 19". In July 1978, months after I was paralyzed, people put their bodies on the line and demanded equal access. That demand is a reality in Denver. Moving west feels pretty fine today.