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".

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.