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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.


Tuesday, May 2, 2017

Why it is Hard to Go Out

It is a raw cloudy day in Syracuse--my kind of weather. I did not particularly want to go out but in an effort to get in better shape I forced myself to go for a long walk. Since the weather was bad I decided to walk through a rather iffy neighborhood. I figured the risk would be minimal. It was early in the morning, it was unpleasant, and no one would be hanging around outside. As I was going down the street I heard a person yelling. The skin on the back of my neck went up. The sound was distant but quickly realized the person yelling was getting closer and closer. After a block I knew I was being hailed. I heard a street person yelling "God Bless you. God bless you." Time to pick up my pace and turn the corner. Luck is on my side. It is a clear down hill. I turn the corner, go faster and hear: "God damn it, I said God bless you. God bless you". At this point I am not sure if I am scared or angry. Two blocks down, I decide to zig and then zag in hope I can avoid the person who wants to assure me God has a special interest in blessing me. I think the coast is clear as I have gone four blocks and the person yelling that God wants to bless me is nowhere to be seen or heard. Relieved I suddenly hear to my right a very loud, shrill and angry voice "Mother fucker, I said God wants to bless you". At this point I am flat out angry because I know this street person and have given him bags of return bottles in pristine condition. I turn around "Fuck off, stop following me asshole". I almost never reply in anger but this person has literally been stalking me for almost half a mile. The reply is not what I expect. "Careful mother fucker. I know you. You had the black dog and walked around here. I know you, I know where you walk. God struck you down because you are evil. If you accept God's blessing you will be cured. It was my turn to do the unexpected. "Go for it. Bless me asshole. See how far the blessing cure shit goes". A stare down begins and yo and behold no cure took place. We scowled at each other for a few minutes, neither yielding. Finally God's blessings delivered with no cure in evidence the person stomped away in silence.

I know the street people in my neighborhood. They keep to themselves and for them it has been a long hard winter. I know where they camp out, the buildings they use, and know the people to avoid. When alone, the key word here is alone, I am often targeted by do gooders. Do gooders come from every walk of life. Some do gooders are employed and apparently enjoy good mental health and economic success. At the other end of the spectrum are street people with obvious mental health issues. Each end of this spectrum carries bodily risk to me. I have been screamed at, had doors slammed in my face, and had people try and take my wheelchair from me as I transfer into a car. The list of socially inappropriate actions and behaviors is extensive. The one common theme however is I am always alone.

Between November and the present I have not been outside often by myself. I was keeping off my skin for an extended period of time. I was getting rides to and from campus and not taking the bus. Since Kate died I have not taken three walks a day or more. Well, I am out and about now and given a  daily reminder exactly how hard it is for a person with a disability to venture out into a hostile world. Unwanted comments are rampant. Barriers, social and physical, abound. Ableism is in every nook and cranny of our society. It is so easy to say, come on let's go out and have some fun. Let's go for a walk.  I do this on a regular basis. Yet always in the back of my mind is what sort of hassle will I encounter. I am an urbanite which is my preference. I depend on the bus. I like to walk and look at relics of Syracuse once mighty and powerful industrial past decades into decay. The downside to this as a lone cripple are social interactions that are not just skewed but flat out wrong and at times I worry about my safety. I have never been physically assaulted but do worry there is always a first for everything. Today I was worried. So as I sit inside looking at a stack of student work, preparing for a lecture I will give this summer and another in the fall I am sad. With each and every passing day I fear I will not live long enough to have the experience of worry free trips into my local environment. Yet today in gritty Syracuse I am filled with excitement. I am moving to Denver with a population of nearly three million people. It is my hope no one will follow me demanding to bless me. Now if that becomes a reality it will feel like a blessing.

Friday, April 28, 2017

Keep on Pushing Brother

Spring has truly sprung in central New York. Lilac bushes are blooming as are tulips, azaleas, daffodils, dogwood trees, etc. The building I live in recently spread mulch outside the shrubs and my apartment smelled of the earth. As the temperatures have soared, yesterday was 83 f., I have made a concerted effort to get out for long walks as I once did when Kate was part of my life. As she aged, she became a real sniffer. Her ability to walk declined but her enjoyment of the smelly wonder of nature increased dramatically. It is called adaptation. We humans excel at adaptation. If you live with a disability you know all about adaptation and creativity. The world is not constructed for wheelchair users. Sure the law dictates all new construction be accessible but that always comes with a proviso. Wheelchair access is not valued and does not present an aesthetic we are drawn to. Hence I see ugly after thought ramps attached to the front, side and rear of buildings. It is as though the architect came up with a beautiful building design and thought "Shit, I need to put a ramp somewhere. I don't care what it looks like as long as it meets the letter of the law."

I get much thinking done as I walk around the city of Syracuse. Today, I walked around my neighborhood of Franklin Square. I passed many homeless people. I passed more than a few urbanites walking in business clothes. I know two bottle guys who make money collecting return bottles. These men work very hard and its a dirty job. I think the bottle return laws are great and return or give away my free nickels. The area I lie in is a strange place. Within a mile I can pass homeless people who live in camps that can range from primitive to rather elaborate set ups. I shake my head in wonder how homeless people can survive the winter in Syracuse. This is a gritty city and outdoor living is harsh in the extreme. Regardless of one's stature, social or economic, what I find remarkable is all the comments I generate. These comments come largely when I am alone. In the last ten days I have heard:

"Keep on pushing brother"

"God will heal you. I will pray for you"

"Fucking retard" 

"Get on the side walk asshole" (no sidewalk exists)

"Its a lovely day, enjoy"

"You are the anti-Christ"

"You should not be out by yourself"

"How fast can that thing go?"

"Want to race?"

"Why don't you just die already"

Unpredictable. My life is never boring when I go out in public. College campuses offer some refuge in that the overwhelmingly nasty unsolicited comments are largely absent. But in gritty Syracuse I often have no idea what people will say. Part of this is the area I live in. I can pass a $100,000 car parked on the street and see a bottle guy a few yards away collecting returns. Only in America--thank you capitalism. Walking makes me realize in a visceral way that disability is a cause and consequence of poverty. I am as a result far more comfortable around poor people. The disenfranchised are my people. I know this because I grew up surrounded by great wealth. I was always the only person using a wheelchair. Snobs looked down their noses at me, aghast I was present. The unspoken reality is that disability and poverty go hand in hand. The troika of a lack of education, access to mass transit/housing, and unemployment result in fractured lives. Countless lives have been derailed. This is a human rights catastrophe that no one wants to talk about much less solve.  I think about this every day. I rail against this every day.

As I pass abandoned buildings, renovated former factories, abandoned houses, newly built hotels, it is easy to get depressed. Disability is hard. It is a vortex that can be utterly catastrophic. Long ago when I became fascinated by anthropology I thought about doing Native American ethnography. The more I read the more depressed I became. I did not want to spend the rest of my life reading about genocide.  Disability history is not exactly uplifting reading. If you doubt me just read The Ugly Laws or Nothing About Us Without Us. So on this day I refuse to give in ableism. A word that I once thought would never be popularly used. But I am wrong. For my son and I recently commented about how we see the word more often in the mainstream press. The advance of disability rights is taking place but at a glacial pace. For my fellow cripples, hang in there. Tomorrow will be a better day. Don't give bipedal bastards the satisfaction of giving in. Get outside. Live life to the fullest. Enjoy the below "Still Not Dead".


Tuesday, April 25, 2017

Syracuse Years Coming to an End

Since November of last year, I have not been inspired to write. This is the least active period I have experienced since I started Bad Cripple in 2007. To date, I have written 788 posts and have generated over one million hits of 30 minutes or longer. Bad Cripple has obviously been a labor of love.  I am not sure why I am in such a writing slump. Major changes in life have piled up and created a lethargy that is hard to shake. For the first time in almost 25 years I do not have a beloved Labrador at my side. I am still deeply mourning the death of my black Labrador Kate. This mourning process has made me retrospective. Kate’s death has prompted many memories of my old yellow Labrador Burt who grew up along side my son. Both dogs led a full and rich life. This mourning has triggered more intense mourning for the deaths of my sister, brother, and mother (all of whom have died within two years of each other). These losses have been staggering. Indeed, staggering has been the story of my life recently. I feel like a punch-drunk fighter. I get up and go through the motions of life.  I teach, write, cook, clean, walk, keep up with emails. I lead the mundane life of a scholar.

What others do not see is my heavy heart and spirits. For the first time in my career I have not truly enjoyed teaching this academic year. My students are great but I feel estranged from them. Without Kate by my side they arrive seconds before class starts and depart at warp speed when class ends. No students linger to pet Kate and tell me about their lives. The sad fact is my social life has taken a major hit without Kate by my side.  Oh, how I once complained that it would be nice if I could walk across the quad and not be stopped by others who wanted to pet Kate or tell me about a beloved dog that was left behind at home. I think with chagrin, be careful for what you wish.

Aside from the existential angst described above, I have had lingering woes with my skin. Worse, I had a very serious health care scare. I was forced to seek medical care and before I knew I found myself in the back of an ambulance fearing for my life.  I had a cardiac issue. No matter what I did I could not get enough air. I felt and feared I resembled my mother at the end of her life—gasping for air like a fish on a dock flopping around in a vain effort to breathe. The jury is still out on what took place and if my heart has been damaged. Thanks to medication, for the time being I feel fine. However, accessing health care was as always deeply problematic. The ER physician profiled me. She distrusted every word that came out of my mouth and was far more worried about my skin than my heart. I was worried about my heart and had no interest in wound care.  I have nearly 40 years of experience with wound care and none of the wounds I have are worrisome. As for my heart, I seem to have bounced back but will need to follow up on the atrial flutter I experienced. 

The above is a long preamble to exciting news. My days at Syracuse will come to an end this summer. For this I am glad. Since the Chancellor arrived the university, the campus culture really has changed for the worse. There is an effort, intentional or not, to corporatization and superficiality. Meetings have meetings, promises are made and reneged upon. What is said and reality can be dramatically different. The strategic plan must be followed!  In the last year, much boasting has taken place about how important disability access is on campus. For example, the promenade that I have written about in the past was used to justify the controversial multi million dollar project. I have read repeatedly that one reason why the promenade was needed was to make the campus more wheelchair accessible. I am sure designers and administrators believe this. I am equally sure they have no first hand experience with wheelchair use. Thus it likely comes as a shock but the fact is the promenade has made it harder for me and others to get around campus. A veritable sea of steps were added which is a symbolic and concrete fuck you to any person who uses a wheelchair or has significant mobility issues. This also says nothing of the fact students and faculty members I know with a disability are miserably unhappy. Access failures are a regular occurrence and sincere apologies are given.  For example, ALS interpreters booked weeks in advance have been canceled at the last second. The Orange Success software is completely inaccessible to the blind. The list of affronts is seemingly endless. Behind the veneer of false compassion lies a deeply troubling reality. Reasonable accommodations are made out of the kindness of heart. The administration seems to think they get to pick and choose when to make so called reasonable accommodations. Sorry but no. Reasonable accommodations are part of the ADA—federal law and a matter of civil rights. I am not playing when it comes to disability rights. I am not the meek appreciative cripple the administration envisions. I will not show up, wear a yellow construction vest, hard hat to a photo op and thank the administration for being more accessible. I refuse to be wheelchair Otto as one Syracuse booster who happens to be crippled is derisively called by students. I am not a mascot but a human being.

Twenty-six years after the ADA was passed into law I expect unfettered access to all campus events. The current administration utterly misses this point and ableism is deeply rooted campus wide.  When things go wrong in terms of equal access, like regularly holding events in Grant Auditorium that is “minimally accessible” by law, people are quick to point out the university has an ADA coordinator. This is true. But it ignores the fact I watched nearly 600 people walk up a flight of steps to an auditorium that is grossly inaccessible. This is but one example of what I would deem ADA 101 failures. When I point out there is a distinct pattern of failure and that students, faculty, employees, and visitors have all experienced unacceptable access fails I get perplexed looks from administrators.  At this point, I  feel like Tiny Tim who had the gall to ask for more. This semester I have spent much time thinking about Dickens and how he used characters to demonstrate the disparity between social classes. I see that divide on Syracuse campus.  People with a disability have a radically different experience than the bipeds who abound. Like Tiny Tim, my spirit is strong and robust but I am not a super hero.  People with a disability are a class apart and our rights on campus are being violated.  My experience is but a microcosm of the civil rights violations that occur with alarming frequency. Such violations are getting worse not better and it appears to me the new class of ADA coordinators job is not to insure equal access for disabled students and faculty but rather to insure the university does not get sued for violating the ADA.   

The bottom line is I am not happy at Syracuse. The university does not care about disability rights. Disability is reduced to a matter of symbols. Lip service is paid to disability but nothing more. If the administration truly cared a number of disability related employment positions filled in recent years would have gone to qualified people with a disability.  The motto nothing about us without us clearly does not resonate within the administration. Indeed, the university has the feeling of an NCAA sport oriented campus  that cares more about basketball and football than it does to creating a vibrant and inclusive campus life. I for one find it distressing that the first ten sorries in the local newspaper are about the baseball program and not scholarly activity on campus. In short, what was once an exciting place to work filled with possibilities is now a dead end. The university is rotting from the top down.


The time has come for me to be bold. There is nothing left for me in New York. My parents are dead as are my siblings that cared about me.  I will accordingly move out west as I have longed to do for a very long period of time.  I will finish out the spring term in May. Then in June I will have a wonderful experience teaching at Yale as part of the Sherwin B. Nuland Summer Institute in Bioethics. I found a little apartment in central New Haven and look forward to being part of a vibrant and successful academic program. Afterwards, I head west to the city of Denver. Time to remake my life in a new and exciting way. I anticipate having much to write about in the very near future. So to my loyal readers fear not. I will return to posting on a far more regular basis.