Time Drains Away

Many people without a disability are idly curious about me. How do I get in the car? How do I get dressed? Can I have sex? There is a long list of inappropriate and sometimes rude questions that are posed by strangers. Over the years I have gotten a sense when and when not to answer questions. In recent years I have returned questions with one of my own. Why are you asking me questions? Usually the stranger replies: I am curious. To this I respond I am not interested in your curiosity. The social interaction ends abruptly. I suppose some strangers think I am rude. Frankly, I do not care. I am willing to potentially engage because once in a while people have good reasons for asking me questions. For example, I was kayaking last summer and a guy asked what level of injury I had, how long had I been kayaking, and what sort of kayaks I preferred. I asked why he wanted to know and he told me his father had a spinal cord injury a year ago and had not as yet returned to kayaking. In the following days we exchanged email. I asked him to keep in touch and a few weeks later he told me about a great day he had with his father kayaking. He went to a location I had never been to that was accessible. We all benefited from the questions he asked me.

For the exceptionally naive stranger, I am asked about my health status. More than one person has asked if i am terminally ill. When I reply that I am healthy and that my biggest problems are social and time related people look perplexed. No drama. No suffering. An ordinary life? Can't be. Of course there are specific and sometimes severe secondary conditions associated with paralysis. I manage such complications well. I have had one wound in 2010 that involved a nearly year long recovery. I have fairly typical urological issues that I will not bore you with. I experience pain in my hips--the lasting legacy of my wound in 2010. I can't really complain about the way my body functions. Frankly, I do not think about my bodily functions. My thoughts are akin to an unimportant app on my cell phone. The app is always running, drains little battery life, and is ever present. What I do think a lot about is time. Performing my ADLs to use physical therapy talk is a significant drain on my time. The ordinary is time consuming. I lose many hours a day doing the most simple tasks.

Consider today. I wake up and get out out of bed. Transfer one. I do my usual morning stuff. Use the toilet. Transfer two. I get dressed. Transfer three. I get in my car. Transfer 4. I get gas and put air in my tires. Transfer 5. I get pizza for lunch. Transfer 6. I go to the bank. Transfer 7. No one answers my messages about handicapped seating where the local AHL team plays. I go to the arena box office. Transfer 8. I drive home. Transfer 9. All these transfers take time. Finding parking spots takes time. Finding an accessible bathroom also takes time. Waiting for the bipedal person magnetically drawn to the one accessible stall I can get into takes a great deal of my time. Lots of needless waiting is my norm. Weird and skewed social interaction are also my norm. Even more time is lost when something goes wrong. Two weeks ago I drove a close friend to a doctors visit. It was a long drive. I knew at some point I would need to fill the gas tank. I noted my tires needed air. My friend pumped the gas and put air in my tires (a giant luxury). This is when things went askew. The fill valve on the tire cracked.  Air gushed out the wheel and went flat. Great. We call triple AAA. We wait. Guy shows up. I get out of car. My dog kate must get out of the back of the car so the AAA guy can find the donut. He puts the donut on the car. Kate jumps into the back of the car. I transfer into car. We drive 4 miles to the nearest repair shop. Kate gets out of the car. I transfer to my wheelchair. The guy at the shop is very nice and quickly repairs the tire. Many criticisms are leveled at the shoddy tire valve on my fancy car. We agree VW deserves everything that will unfold in the coming year for cheating on diesel car emissions. Donut is secured and put away in its cubby. Kate jumps in the back. I transfer into the car. We lose at least one hour with tire repair. And here is the kicker we were lucky. Actually, I was lucky. The flat took place at a fuel stop off the interstate. The AAA guy was nearby. The garage that put a new valve on the tire was swift, exceeding polite and asked for just $15. What if I was alone and broke down on a side road? I choose to not think about this. Instead I am vigilant in terms of keeping my car well maintained. All inspections and maintenance are up to date. At the end of the day my hip was on fire. If I transfer more than 6 times a day my hip will hurt. It might hurt for five minutes or five days.

Disability: the time sucker of all time suckers. Nothing is routine. Nothing is easy in a world that is designed and constructed for the hordes of bipeds that roam the earth. I never cease to be amazed at the ignorance of others. This bothers me. How can people be so oblivious 25 years post ADA? Why do some people freak out when I appear? Why is my existence always seem to be a problem? Over the weekend I went to a small town diner. The person serving me was extremely nervous. She stood  oddly far from the table as she took my order. Her hands were shaky. She spoke very slowly and deliberately. She spoke so loud one or two people turned to stare. Then she dropped the bomb. She asked me in the slowest way possible: will.... you.... need... help...assistance....to eat...you know... you know...to eat your food. I can cut up what you order. I can feed you. I took a deep breathe. I told myself not to lose my temper. I tell myself she thinks she is being kind. Getting angry will not help. She has likely lived in Central New York her entire life. She is old. She should not even be working at her age. She should be enjoying life. I put a fake smile on my face and say no thank you. I enjoy my meal despite dealing with ignorance and being unintentionally demeaned. As I leave I see the woman in question and her parting words to me are killer. It is so nice to see you out.  Hopeless. The world is hopeless. Bipeds don't get it and most do not want to get it. I wish in retrospect I got angry. I do not mean I wish I raised my voice in ager (I never do that). I wish I had asserted my independence. I told this to a friend who told me I was in a lose lose situation. He joked if you told her you were a professor at Syracuse she would have patted you on the head and said good boy or gush I was an inspiration.

Finally, for those that think I am too harsh below is for your viewing pleasure. Each and every question and multiple variations I have heard over the years.

But it had a Cost

It has been an unusually long time since I wrote here at Bad Cripple. In August I was enthused about the Fall semester but depressed. I retain my enthusiasm and ditched my depression in large part because my honors class is as usual filled with excellent students. I am somewhat taken aback the calendar has turned to October. Before I know it I will be grading papers--a job I enjoy in large part due to the fact my students know how to write well. More personally, I have been out of sorts for two months. August is always rough for me physically. I wither in the heat. By late August I am worn down. This September seems like it was hot as August and two months of heat has left me out of sorts. Beyond work, I have not been able to focus on anything. I have many excuses: I am worried about my mother's health. All week I have been thinking about my brother Jim. He died in April and today was a football day. I am a New York Jets fan and the team played in London. With the time zone change the game started at 9:30AM. I had the game on the radio as I cleaned up my house and I recalled Marty Glickman. Now that man had an interesting voice and an even more interesting life. This in turn made me think of my brother Jim and my father. My brother Jim loved the Giants and tailgating. The man was a master at making sandwich. In his honor I made a great sandwich for lunch. As for my father, every Fall we would go to late mass, then see my grandmother, and drive to watch the Giants play at Yankee Stadium. We watched the 3rd quarter only and listened to the rest of the game on the radio. Ate the game, my father had a beer and I had a coke. We each ate one hot dog. My father smoked a cigar. Oh, how manly I felt. Surrounded by other men we cheered on the Giants. I did not really care about the game, it was the experience. Life was good. It still is.

It is a gorgeous Fall day. I have no right to complain about my lot in life.  I live in a little town in Central New York and am currently looking out at a magnificent view of a lake. My rent was paid on time. My beloved labrador Kate is at my side. I have really good food in my fridge. My car is in good working order. Physically I feel fine though I am not thrilled with the aging process and being a middle aged man. Am I going to complain? You bet I am for my life and current position have come at a cost. Given the opportunity, I would without question not change my life in academia. My father was proud of me and urged me to do something important. Do not worry about money he told tell me repeatedly. Do something important. For him and me, important meant become an academic.  When I question life and career choices I close my eyes and think of the day I got my PhD at Columbia. My father and mother were very happy. Arnold Gold and his wife Sandra were there and happy like my parents.  I was married and my son was an infant. It was a great day and remains a cherished memory.

As I sat in the sun and ate my lunch I read two stories that deeply touched me. It reinforced how lucky I am and makes me wonder about my future. Last week the Seattle Times published a story about the life and death of David Heller. Heller lived in Seattle and for many years worked as an adjunct. Adjunct work is hard. Adjunct work pays poorly; Heller, at age 61, earned $18,000 a year, well below the poverty line. He had no job security. He was hired by the semester. He had no benefits. There are perks to being an adjunct. The administration has no interest nor commitment to an adjunct. We get to pick and chose the degree we want to be active on campus. We are cheap day laborers and just as invisible. We come and go and many teach at multiple universities at the same time. In the Puget Sound area, adjuncts are referred as "I-5 flyers". This is how 70% of professors nationally earn a living. In the Seattle Times a friend of Heller's, Charlie Fischer stated:

Heller was a symptom of the commodification of education. It’s increasingly about measurable outcomes or monetary results. Because an engineering degree has so much more economic value than one in say, literature, the former is supported while the latter is slowly devalued.“Dave was like an itinerant philosopher,” Fischer says. “There’s almost no role anymore for people like him.In his story, Fischer quoted a UW philosophy professor saying Heller was so dedicated “He would have lived in a barrel, if necessary, to devote himself to teaching.” That’s a great tribute to the man, but an indictment of the system that it almost came to that. Link: http://www.seattletimes.com/seattle-news/gifted-teachers-life-of-the-mind-was-also-life-of-near-destitution/?utm_source=facebook&utm_medium=social&utm_campaign=article_left

At the time of Heller's death he lived in a tenant group house in Seattle's U District. He had a worn out bed, a fridge and a massive library of books crammed into a small space. I get this. I live Heller's life as do 70% of all professors. For most of my career, I have been underemployed and on the periphery of academia. I have been treated badly. I have been treated well. I have no idea what will happen from one semester to the next. I hate the summer because I am not paid. I can no longer teach during the summer--the physical grind is too taxing. If you factor in the prep work required to teach, I earn about $10 to $15 an hour. Some ask, why don't adjuncts object? Some do. In February 2015 National Adjunct Walkout Day was held. I did not walkout. I do what I always do--held my class, slapped a smile on my face, and did my job. I know what others have figured out but for complex reasons refuse to admit. If all adjuncts quit tomorrow the American collegiate system would literally fall apart. There is too much money involved for that to ever happen. College is a cash cow.

My future is unknown. I will hang on here at Syracuse for as long as possible. I have nothing to tie me down. I launched my son into the real world. I live alone in a small apartment. I have a borrowed desk. I have a bed and a drum table. I have one folding chair. I have a lot of books. It is a good life I lead. A solitary life.  I wish I could share it with my brother and father. Instead, I try to remind myself of the good times we had. As I noted, I am out of sorts.

The New York Mets and Matt Harvey

I love baseball. It is a great game. On those long summer days the game unfolds in an evolutionary manner. Baseball's beauty opens slowly and is recorded in excruciating detail. Baseball's oral history is rich and deep. The athleticism is striking. The gamesmanship ranges from hysterically funny to absolute genius. When one goes to a baseball game you have no idea what will take place. One can witness magic on the diamond.

I fell in love with baseball at age 9. I still have my baseball mitt. For many years I slept with my mitt under my pillow. As a boy, I lovingly cared for my glove all summer long. It was a cherished item. In the fall I would get some twine of rope from my mother, oil and clean my mitt, put a ball inside it and tie it up. It rested comfortably in my closet, always visible. This was bitter sweet reminder of summer days. In retrospect, I was and remain a dreamer. At age 9, I dreamed of being Tom Seaver. It was because of Seaver and Ed Charles, a journey man 3rd baseman, I came to love the Mets. All boys in the late 1960s aspired to be Tom Seaver. I emulated  him when I pitched. Seaver was a power pitcher. In 1967 he was rookie of the year for the Mets. He pitched 18 complete games for a team that stunk. The Mets lost 101 game. They won 61 games. Do the math, Seaver was great. A hall of fame player from day one. Baseball laughed at the Mets but swallowed crow in 1969.

What does baseball have to do with disability rights? I love baseball for reasons aside from the game. My dreams of becoming a professional player ended the same year the Mets won the World Series. I knew whatever was wrong with me as a boy would destroy my physical ability to excel at sports. I would never be as good as my brothers, both gifted athletes. I could, however, still love the game. I read the box scores. I memorized the Mets player stats. I knew the ERA of every pitcher and the average of every batter because baseball has always been about stats. But one thing connected me to the game more than anything else--my father. As a sick kid he was wildly creative in keeping my mind active. He gave me something to look forward to on a daily basis. This might not sound like much but I pretty much went from a typical boy running and jumping to being stuck in a hospital bed everyday. My father would drop off the early morning papers on his way to work. My mother would arrive later in the morning after my siblings were off to school. She would bring fresh orange juice and books for me to read. I would listen to the radio after my mom left mid afternoon. Ah, the radio. It was not just any radio. It was the first transistor radio. It fit in the palm of your hand. My father also gave me the task of listening to the live call of the horse races on news radio 88. In 1969 horse racing was big and the races were broadcast live. I wrote down who won and who lost. On his way home from work my father would bring me the late edition of the NY Post, the local tabloid. He would sit at the foot of my bed, the bed I was not permitted to leave, and we would listen to the race results. We would each write down the name of the horse, the odds, and the payoff of for win, place and show bets. After my father left, I would listen to the radio deep into the night. I listened to one thing: Mets broadcasts. This was my life for years on end. Sick for months at a time. Hospitalized for months. Home for a few months. Rinse and repeat.

I am quick to admit I hit the parent lottery. My parents visited me every day when I was in the hospital. They never missed a day. The pattern of visitation never varied. They were robotic and empathetic in a stiff Irish Catholic way. They were rock solid figures. I never doubted them. I loved them without question. I felt love in return. They gave me the will to survive mind numbingly boring days. They gave me the power to endure pain that no human being should experience. I am alive because of them. More perfect parents could not be wished for.

Back to baseball. I was a smart kid. I am told I was pretty darn cute too. Baseball and medicine were different in 1969. In the absence of medical technology I remember being treated with great compassion. In fact, the role of technology and compassion have been reversed. I was not allowed to have a TV or radio. Technology was frowned upon. My "job" was to get better. Limit laughter and play and focus on recovery. Wards were quiet. My parents did not accept this status quo in their support of me. They pushed hard and I was among the first permitted to have a radio. Given I was a denizen of the wards lots of people knew me. They knew I liked baseball. And I had a modern marvel--a transistor radio. It was small black and fit in the palm of my hand.

In 1969 all World Series Games were played in the afternoon. If I happened to be well and at home I would ride my bike home as fast was I could and catch the end of the game. I could even call my father at work and tell him the score. If I were in the hospital, as was the norm, people would come from all the inter connected hospitals to ask me what the score was. I felt special and useful. I even kept a score card for every game played. This was so I could tell my father in detail what took place and not merely the final score. I was mesmerized by the game and the broadcast. It was a real life line.

I spent a sleepless night as the thoughts above went through my mind. Baseball, my parents, and siblings were all jumbled together. My thoughts were in part prompted by the current Mets team--Matt Harvey in particular. I went to a game with my son and good friend and colleague Stephen Kuusisto. We saw the best Mets game of the season to date: Matt Harvey's first game this season at Citi Field. I vividly remember the game. It was the first time I had fun since my brother Jim died. The crowd was electric. Harvey got a standing ovation as he walked to the mound. My son looked at me in shock: he had no idea baseball could be so exciting. This game sucked me back into baseball. The Mets are good again. It has been a long time since I felt the spirit of the game. I still listen to the games on the radio but it is with half a heart. Much of my mind is elsewhere. But not this year! No sir, I have really been paying attention to the Mets. I was thrilled when they made trades at the deadline for professional and veteran hitters. I admired how they managed Matt Harvey, the Dark Knight. He is the man. He is brimming with confidence and attitude. He has a near 100 MPH fastball with lots of movement. I heard his fastball hit the catchers mitt. It is a sound you do not hear often.  He is the archetype ace of a pitching staff.

Harvey is also coming back from Tommy John surgery. The Mets have handled him and the "innings pitched" perfectly. They have appeased a young aggressive man with the belief we are playing for October (hopefully). He bristled over this. Baseball players are creatures of habit and thrive on routine. The Mets violated his routine. Disgust was written all over his face. They went to a six man pitching roster. He hated it. I liked this. The man has a burning desire to win. All that changed over the weekend. The details do not matter. Read any back page and the gist is the same. He might not pitch in October says his agent. Essentially his agent tossed a bomb in the Mets clubhouse. Harvey poured fire over the bomb with his lack of reply. It might be best for me, Harvey said, to limit my innings. He backtracked a bit but the horse was out of the proverbial stall. Big headlines were blazoned across the back page. Sport talk on the radio became predictably hysterical. I sighed in sorrow. The spirit of baseball sailed into the doldrums. Enter corporate baseball. My baseball fairy tail has been destroyed. The sports writers did not take note of the fact the Mets lost two of their last three games in heart breaking fashion. They wrote about innings limits, Harvey, the general manager of the Mets, and Harvey's agent who I refuse to name. They wrote about how the Mets should trade Harvey this off season. Lost in all the screaming is the game. The wonderful game of baseball. As I write these words Matt Harvey will pitch tomorrow. I cannot wax poetic about baseball now. The spirit of the game is nowhere to be found in my soul. My radio is silent and I am sad.

Yet More on Atrium

It seems that the Atrium fiasco is dying down. I ams still taken aback by the fall out. Two scholars left Northwestern, Atrium will likely never be published again, and a prestigious university has a black eye. This is stunning to me, akin to a bad joke, but this is no joke. I will ponder what took place for a long time. Last night as I watched the full moon rise I was reminded that when it comes to disability rights the pace of change is glacial. Linking sexuality and disability remains a taboo for some. Disability is a social beast few outside disability rights care much about. Exceptions exist of course. Why I am even friends with bipedal people.

There is no outrage on the part of others when my rights are violated. Oh, I get a lot of sorries, many awkward silences, reprisals for not disclosing my disability in advance, avoidance etc. What I do not get often is a warm reception and support from strangers. While it pales in comparison to what Alice Dreger has experienced, I have taken much heat over the last year because of my essay in Atrium. I do not know what to make of my experience. I do know the controversy that erupted clouded the fine work of other scholars who contributed to Atrium. I do know the controversy did not prompt a discussion about sexuality and disability. To this end, the Chronicle of Higher Education published a short opinion piece I wrote. Link: http://chronicle.com/article/Sexual-Healing/232765/#disqus_thread

Here are the final few paragraphs: I knew there was a possibility that my essay would cause controversy. But the controversy I imagined revolved around disability, sexuality, and the professionalism of health-care workers. Having spent most of my adolescence on various neurological wards, I am well aware that health care is a series of complex relationships among people with divergent backgrounds and expectations. That is why I think that sexual relations between patients and health-care professionals is inappropriate.

I wanted to write about a unique and little-known history. Medical technology was not revered as it is today, mostly because it was absent. In place of technology, and in the absence of a universally accepted approach to rehabilitation, health-care workers were wildly creative. The focus was on what a body could do at a given level of injury. Walking was dismissed, and new forms of navigating the world were embraced. No idea was off the table, if it could help someone function in the wider world.

Such creativity is largely absent today. With an average length of stay for in-patient rehabilitation about 55 days, people with spinal-cord injuries cannot possibly learn all they need to know about bowel and bladder control, skin care, and so on. Teaching those imperative, but mundane, life skills does not attract patients or generate revenue. Instead, rehabilitation centers market and brand themselves around various forms of expensive, cutting-edge technology or a focus on cure.

Those approaches perpetuate feel-good stories about people overcoming paralysis and learning how to walk, thus increasing even more the stigma associated with using a wheelchair. That is a social failure for newly paralyzed patients and their families. Thinking about what people with disabilities can do rather than what they can’t do requires imagination — which my "head nurses" had in abundance.

Loneliness Reinforced

A friend told me that I wrote quite a post yesterday. My new philosophy of life indicates that despite 40 years of progressive legislation society remains hostile to people with a disability. Access and equality is at best decades away. Given this, I am acting out of self preservation. I want to reduce emotional pain and negative social interaction as much as possible. Accordingly I go out at odd times. I often do grocery shopping at 5 or 6AM. No one is in the store. I do the same with with laundry--the laundromat attracts shall we say characters. I rarely go out on weekends. Weekends are high risk days. People abound and they usually have something to say that is far from positive. I was in my small local town this weekend and a store owner asked me if I could get a speeding ticket in my wheelchair. I just looked at him, my facial expression neutral, and said nothing. He was pleased with himself and laughing out loud (he does not know it but he lost my business).

I should know not to go to a diner on the weekend (Sunday is always a no go). But I had a yen for an egg sandwich and the local diner is pretty good. They have a one egg, thin slice of cheese and two pieces of bacon sandwich. Perfect for my limited appetite. I got there around 6:30AM, a bit later than I am comfortable with. The place was relatively empty. I see a table in an ideal location so the waitress or customers will not hit my wheelchair as they go by. With a minute of sitting down I observed three men my age drinking coffee. I can hear snippets of their conversation. They are discussing religion. The hair on the back of my neck goes up. This is trouble. I know they are going to say something given half a chance. I think I better move. I stopped myself though. I am being a bigot. I am assuming they will be trouble based on a sixth sense?  They could just be three guys who got into a religious discussion. Wrong.

I ordered my food and am reading the newspaper on my phone. The men in question have finished their food and as they walk by me the man in the center stops and they all turn to me. Oh, no. I have no where to go. I am trapped. The man says "We are going to pray for your crippled body and rotten soul.  We are going to pray for your sins and ask God not to strike you down again for you have sinned terribly". With that they got on their knees next to the table, heads down mumbling prayers". I too wanted to pray to God. I wanted to move my right leg and kick them in the balls.  They prayed for about 90 seconds, got up and walked out.

In retrospect, I wish I had taken a video with my cell phone. I have had comparable experiences a few times this year. Most incidents I can avoid but sometimes I get trapped in a Catch 22 situation like in the diner. After the men leave I contemplate my ruined appetite with the fact I already ordered food. I think for a minute and see the waitress. In a perfunctory way she says sorry and something about the men being regular customers. I say I will pay for the meal and just want to leave. She says forget about payment and gives a slightly more sincere sorry. She is a seasoned diner waitress with a deeply lined face. She has that indifferent body language of a person that has worked at diners for decades and has seen it all. There is slight smell of diner aroma mixed with cigarettes smoke that clings to her work clothing. I leave without a word and head to the laundromat. I wonder how is it that devout believers can be so cruel? Why do heavy duty Christians see me as a target of opportunity?

Let me return to my friend's line about yesterday's post. What incentive do I have to interact with the majority of the bipedal population? I am not a human being to many but the symbol of what can go wrong in life. My existence many assume is miserable. I have a very good life and simply do not want to be forced to defend it to the Christian men that verbally assaulted me. I have no doubt they were quite pleased with their actions. I am sure they think they did God's work. I know with certainty I will never go to that diner again. What took place was well out of the norm but has happened to me continually since I was paralyzed. Social interaction is regularly skewed and nothing average remains average long when I go out. Parking my car and getting my wheelchair assembled is as astounding as the Grand Canyon. I am regularly stared at. When I bike some people have stopped on a dime as I passed them on my hand cycle and yell at me to stop. In the distance I hear "I want to look at the bike". Some bikers have followed me for miles keeping a running commentary about how amazing I am. I now have a trainer and bike in my house. I do not want to be a stranger's super cripple. I am in reality an ordinary person. Yet I am barred from being ordinary.

Frankly, I have no incentive to interact with the vast majority of bipeds. Many have my lot in life already figured out. One thing is consistent. I am inferior physically and socially. I must always justify my existence and adjust myself to a world that would prefer I not exist. Life with a disability is a social death by billions of tiny paper cuts. No one wakes up in the morning and thinks I am going to be a bigot to people with a disability. But that does not make the degradation any less real. After 37 years I am done. I will trust the hair on the back of my neck. I will avoid bipeds I do not know. I will restrict myself to campus. I will be a ghost. And I must confess I yearn for a community of like minded people who get it. I am not a bigot. Lots of people who are bipedal get it. I will embrace all those that see what I and others with a disability can do. For that is my first thought when exposed to others with a disability. I see bad asses that have survived a hostile world and adapted and thrived. I can still thrive I choose to do so alone.

Loneliness is in My Bones

Before my brother Jim died he told me "I wish you could be a bit happier". He really meant this. He did indeed want me to be happy. Many things make me happy but deep down I remain lonely. There is an ache in my bones that is ever present. No bipedal person gets it. No one who has a  typical body gets it.  Oh, many typical people try to understand but they can't. You see my people have no home. My people get beaten, molested, institutionalized, isolated, and demeaned. Stigma clings to our bodies as though we are bathed daily in super glue. Accessing health care is difficult and dangerous. Many have been offered assistance to die rather receive treatment to live. We are scoffed at when we talk about identity and disability. The ADA and 40 years of progressive legislation has put the law on our side yet there is no mandate to enforce it. When I explain the ADA is civil rights legislation people look at me as though I am crazy. I am harassed on a regular basis. I have been screamed at and spit on. I have been called the antiChrist. Me being lonely is an understatement. Think more tortured soul.

I went through the medical mill as a child. Pediatric neurology was in its infancy. The field itself was less than two years old when I presented alarming and life threatening symptoms. Cumulatively, I spent years on wards of 16 morbidly sick kids. I have been paralyzed for 37 years. I have seen the dark side of American society. I have seen the worst parts of the best buildings. I have been refused service in restaurants and am routinely seated at the cripple table when I go out to eat.  The message is unrelenting and impossible to escape: my presence is an odious reminder of how life can go wrong. Disability is very bad. Disability is expensive. I am special. We Americans hate special people. Being special is an unfair advantage. Handicapped parking is a battle zone. Housing, mass transportation, and employment force people with a disability to live on the razor edge of poverty and homelessness. Section 8 housing has a waiting list of many years. In Syracuse 95% of housing is inaccessible. I fear my landlord. They know I have nowhere to go. My loneliness is heartfelt and driven by a hostile world.

I have nightmares. I cry a lot. My brother Jim is dead. My father, the rock of my life, has been dead many years. I look at his picture daily and mourn. That mourning is never ending. My heart has been broken repeatedly. I have lost friendships I cherished. I loved two women in my life. Both broke my heart. I have a body that is freakish. Thanks to strangers I am well aware of this fact as they freely comment on my body. Life as a cripple is hard. And I am lucky! I get this too. I am indeed lucky to be alive. I never imagined being an adult much less a middle aged man living alone. I am lucky. I am well educated and live in a semi accessible rental. I love my work--I just don't have enough of it. Yes, I am lucky and state this without an inkling of irony. I am a survivor. I will relentlessly move forward. Head down I will soldier on no matter how bad things get. I do have a request though. Do not tell me I am lucky. Never ever do this. My pain is both psychic and physical. I was up all night. My hip burned like a red hot poker was on it making sleep impossible. The pain made me nostalgic. The good old days for me ended for me at age 9.

I read an essay repeatedly last night. Lara Lazenby wrote "I am a Childhood Cancer Survivor Forty Years. It is Never Over". Link: https://laralaze.wordpress.com/2015/08/23/i-am-a-childhood-cancer-survivor-forty-years-it-is-never-over/ Apparently September 4th is Childhood Cancer Awareness Day.  She wrote that cancer treatment forty years ago was archaic. It was brutal. My treatment was brutal too and it was the best medicine had to offer. Three massive surgeries on my spine and about 22 spinal taps over a period of ten years takes a toll. Like me, Lazenby has physical and emotional scars.  She wrote:

the next time you are tempted to tell a cancer survivor to “Get over it,” remember that it is never over. The side effects of childhood cancer never end. They are decades long. They creep up and blindside me. Again. And again. And again. So please get over your discomfort when cancer fighters and survivors must talk, must weep, must grieve. We are broken. Often shattered. It takes an uncertain amount of time for us to pick up the pieces of shard and rebuild our lives. Your thoughtless words only add to the emotional scars we carry. Please spend less time trying to shut us up, and more time spreading the hope because your friend, your co-worker, your family member, or the love of your life survived.

I am still here. I am surrounded by the most precious guardian angels that went before me. They are etched in my memory forever. And some day, when it is my turn to go, I will embrace them with tears and laughter. I know it.

I feel broken. I feel shattered. I am deeply flawed. I struggle with depression. I never had cancer but I sure as hell suffered as a child. I have spent much of my life in pain. I would not know how to live without pain. But what hurts the most, why I will live out the rest of my life alone, are the invectives I have been subjected to and the bigotry I have experienced. This in the marrow of my bones now.  In the last few months I have changed my entire philosophy of life without knowing it. I am weary and I have shut down. Society 1 Bad Cripple 0. If you are not in my heart already you never will be. I cannot live with additional hurt. Feeling nothing is now preferable.  I trust no one I don't already know. A man can take only so much pain. I have hit my limit.

Feel Good Stories: Asking all the Wrong Questions.

I am a sucker for feel good stories. My reaction though, is two fold. First, like most people, I get teary eyed and am touched by how remarkably wonderful people can be. My second reaction is quite different. I get an uneasy feeling and wonder this story does not sound right. I do some online research, rational thinking and more often than not the facts that prompted one's heart to flutter are hopelessly skewed. One such feel good story floating around the internet is about a New Jersey waitress, Liz Woodward, who wrote a thoughtful note to two tired firefighters who had spent the night putting out a fire that was difficult to extinguish. She wrote a wonderful note and gave them a free meal.

 
No doubt this was thoughtful. The diner did not comp the fire fighters a meal, Liz Woodward did. The firefighters were touched. They deemed her gesture selfless and posted the above photograph on Facebook. The story is nice but not so touching to merit much more than a small story in the local Southern New Jersey newspapers. So, yes as a hawker would cry out: "But there's more!" The more is Liz Woodward father Steve who is a quadriplegic. Oh, the tragedy! The firefighters felt compelled to reward Liz Woodward and of course the tragedy in the form of her father Steve is really draws people. It is also where the story falls off the rails. From ABC News the headline is "Firefighters Meet Paralyzed Father of Waitress Who Performed Selfless Act".  Dozens of similar headlines and stories abound in the mainstream press. All reports state the previous December Liz Woodward started a go fund me page on behalf of her father so he could purchase a wheelchair accessible van. She was hoping to raise $17,000.

From ABC News:

"The firefighters brought Phillies tickets for Steve, according to WPVI, which could be the first time Steve gets to leave the house other than doctors' appointments in five years".

"Weddings, funerals, celebrations, and graduations... He's missed them all. Family picnics on 4th of July or out to the park to watch fireworks  (we???ve always watched them out his hospital window). We???ve shared everything with him on cell phones in videos and photographs since he couldn???t get there"

"we're just firefighters [a modest Paul Hullings]. We're also caring people, we want to be part of everybody's life". 

Liz Woodward: "The message is to be kind to each other, to pay it forward when you can, that even the smallest gesture can change somebody's life".

I am not a cold hearted person. I am thrilled that Woodward's father Steve can now afford to purchase a wheelchair accessible van. I am delighted the story has prompted donations to soar to $77,000.  I am even happier a wheelchair van company has loaned the Woodward's a van at no cost to the family. Like the vast majority of the population Steve Woodward can come and go as he desires. Yet I am ill at ease and more than a little bit angry about how the Wooward's story has been spun. Pity and charity are at the forefront. One family has benefited. Agin, this is great for the Woodward family.  This however is seriously misleading. When I read about this is in the news this is what I wondered:

Why has Woodward not left his home in five years aside from doctors appointments?

Why did he miss so many family events?

Why did he miss 4th of July fireworks?

Why could he not go to the park?

Why did Wood ward not have an accessible van for years on end?

More generally why do wheelchair vans cost so much?

Where was the so called social safety net that could empower Woodward to get out and about on a regular basis?

Where were the humble firefighters who stated they wanted to be part of every one's life?

Where was the disability community who could have supported Woodward?

Why did doctors nurses, social workers, and other health care professionals that knew Woodward was a virtual shut in for years and years act on his behalf?

The sort of questions I pose do not prompt a warm and fuzzy reaction. Indeed, I sound harsh in the extreme. Sorry, but I find the Woodward family's experience all too common. It is in fact the norm. The denial of basic services for people with a disability are shockingly inadequate. The Woodward family got lucky. Christina Symanski, also a resident of New Jersey, did not get lucky. She got help. She got help to die. With the support of others she died legally via VSED--voluntary suspension of eating and drinking. Essentially she dehydrated to death. Yes, this is legal and is endorsed by Compassion and Choices, the leading organization that advocates for assisted suicide legislation.

The Woodward family was caught in a Catch 22 situation. All wanted the best for Steve Woodward. His problems were less physical than they were and remain social. Caring health care workers knew his situation. Perhaps they advocated on his behalf and failed. I have no doubt he is beloved by his family who also did their best for him. They likely were frustrated in the extreme and likely encountered one brick wall after another. This is one's life when disability enters the picture. Poverty and disability go hand in hand. The ADA has done nothing to change this dialectical relationship. Sadly, no one cares. Perhaps that is too hard a viewpoint. No one wants to think about disability that I know for sure. Disability is something that affects other people. Say a prayer or make the sign of the cross and hope disability never happens. This is a very bad plan. The cultural exclusion of people with a disability has been the norm in the United States. Disability is without question culturally bound. Ask the Woodward's how their life has changed since Steve was paralyzed. I am sure they were stunned at the lack of resources available. How does a middle class family afford a wheelchair accessible van when they cost up to and can be more than $80,000. Creating a go fund me page is understandable. But what is the larger social cost? Ableist beliefs are reinforced. Stereotypes are created and reinforced. Disability is an individual's problem; it is not an issue of Civil Rights. The Woodward's got unlucky. We as a society get to pick and choose who gets "help". Wrong! People with a disability do not want help we want equality. We want a typical life. This is not too much to ask.

Able bodied privilege is a given until one ends up in the land of disability.  This is the land of non typical bodies even our heath care system is not designed to accommodate. Entry into the land of disability is shocking to those not exposed to disability. Hell, it is a shock to me 35 plus years post disability. How can society condone the exclusion of a class of people? Why does disability seem to inevitably lead to poverty. Why are some people so fearful of disability they are hailed as strong or heroic figures when they commit suicide. Think Brittany Maynard.

The failure of an individual and we as a nation is an utter lack of imagination for what could be. Imagine this. People with a disability are an important part of society. Exclusion does not exist because it is socially unacceptable--an anathema. Every small town to large city demands equal access. Ramps and elevators abound. Screen readable print matter is the norm. Deaf interpreters abound and Deaf culture is celebrated. Quiet rooms for those with sensory issues exist in every building constructed. All houses and apartment building are accessible as are all our institutions and schools. The lack of access in the broadest sense of the terms is met with outrage. Change is demanded by every person in the nation. Disability contains no stigma. Schools teach stories about how people with a disability were once excluded from the public by ugly laws. Children learn about how women terminated pregnancies because of conditions like Down Syndrome. This comes as a shock to the young who ask why? Why did that happen? Why did ablism exist? These are the type of questions we should be asking and not in some sort of far away future. I know I will never experience such a dystopia but I can dream. If my dreams come true all will benefit and the Woodwards would not need to benefit from luck.