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.
I had been wondering when a new post would appear :-). Thank you for sharing your struggles and I hope a move out here to the Mountain time zone will be a good one!
Travel safely -- may the wind under your wings bear you where the sun sails and the moon walks.
I once served on a grant committee for Freedom Initiative funding here in Nevada and one of the questions from HHS was: Describe all of your dispute resolution systems and how they work effectively to ensure ongoing communication between the system and the users of the system? I thought it was the most brilliant question I'd ever heard. Our state officials insisted on answering that we all just "get along" and never need to use them. I left the committee and Nevada got no grant.
Maybe, before you leave, you should make use of the dispute resolution provided for by the ADA and file suit against the university. It's seriously the only thing that ensures change and the EFFECTIVE communication between people and a system that so erroneously sees itself as perfect.
PS my daughter cannot get a wheelchair under Medicare. Strike all my previous comments about how easy it was under state Medicaid. Medicare is an effing nightmare.
The loss of a beloved pet can carry a tremendous weight, as I've experienced before, and my brother who recently lost two dogs in the course of a few months has been hit very hard by.
I for one will be sad to see you leave, but am excited for your new opportunity out west in a great city. I hope you find a welcoming and vibrant community in Denver.
A pedantic moment: it was Oliver Twist who said "Please, sir, I want some more."
It always makes my day better when I check your blog and find a new post. Although our disabilities are very different (my mobility issues, for instance, require customized orthotics/shoes and a Rollator, not a wheelchair), our experiences as disabled people are so often so very similar. You are regarded as "Wheelchair", I as "Walker Thing", not real human beings with names and worth.
Your posts are hard-hitting, encompass difficult and painful subjects, and always make me think. I am grateful for your screen presence in my life.
May your summer at Yale and your new home in the Rockies bring you much joy.
Tangent Y, Yes, it was Oliver Twist. My error. Sigh...
While I write from the perspective of a wheelchair user the ableism people with a disability encounter is remarkably similar. Glad you find my posts resonate.
make certain that your health issue is cared for before you travel
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