At a Crossroads

My move to the Franklin Square area of Syracuse has provided many benefits. I live with two other people and thoroughly enjoy a more communal lifestyle. In fact, I doubt I would ever choose to live along again. I have thoroughly enjoyed an urban lifestyle. I walk everywhere. I do not miss driving one bit. I sure as hell do not miss transferring in and out of the car multiple times a day. Walking has its own adventures. My beloved lab Kate is aging. We walk long and far but do so slowly. I do not like stopping as I become a stationary target for all sorts of strangers. Some encounters are pleasant and many are not. Bipeds always seem to have something to say to me a wheelchair user with a dog. The range of comments and looks I get are diverse. Young college aged women often give me a broad smile. The smile is not for me, a middle aged old fart, but for my dog. A week ago I was resting in the shade and an older homeless lady got on the ground with Kate and she regaled me with stories about her blind husband. She told me about their life like before guide dogs and service dogs existed. In my building a woman made a point to tell me the building does not permit animals. It was obvious she thought I was a scam artist.

The above is not easy. For me, being typical is not possible. Ordinary social exchanges do not happen often. The use of a wheelchair skews social interaction in almost every way imaginable. I am always a first. Oh, how infuriating this is. Try renting a car--every time the agent will state they have never rented a car with hand controls. Check into a hotel and the desk person will often state they have never checked in a guest that uses a wheelchair. They also have no clue about wheelchair in the hotel or in the immediate area. Get on bus and the driver will say I have no idea how to use the wheelchair lift. I could go on but the point is my existence is singularly unusual. What makes me want to yell in frustration is that no one asks why? Why do you see so few paralyzed people? Why is our existence so rare? Millions of us exist. People get paralyzed on a regular basis. Yet, I have never seen a man or woman who uses a wheelchair work in any service industry type job. I rarely if ever seen a fellow cripple work a white collar job. I never fly on a plane and encounter a paralyzed person on the same flight. In the last 25 years of teaching not one of my students has ever had another wheelchair user professor. To a degree, I get it. People my age, those of us who came of age prior to the ADA, were pioneers. And like all pioneers we paid a heavy price. In a great post, "Letters to a Young Cripple #2", Stephen Kuusisto wrote:

I belong to a generation of writers and academics who came of age before the Americans with Disabilities Act. As a high school student, a college student, a graduate student I endured horrific commentaries from teachers and professors. The dominant trope in American education is speed. Every syllabus is a race. The blind guy with glasses thick as padlocks needed more time to read. He wasn’t supposed to be there. In graduate school at the U of Iowa a famous literature professor named Sherman Paul said I shouldn’t be in his class if I had trouble with my eyes. Against this kind of power-leverage the disabled should demonstrate an all forgiving, all understanding, good nature.

As the years have passed I am growing increasingly short tempered. The ADA is 26 years old. In the immediate area where I live there is not a single curb cut that conforms to the ADA. Exactly how long does society need before people with a disability are given equal access to the built environment? Accessible housing is woefully absent. It took two years to find an accessible apartment in Syracuse. Mass transportation is often difficult if not impossible to access--the New York City subway system is a prime example. Flying on any American based air carrier is an invitation for abuse. This is where my move has been rough at a meta level. I am coming to the grim conclusion despite putting an enormous amount of time and energy into fighting for the civil rights of people like myself  I am simply never going to witness a world free of ableism. This knowledge is like towing around an anchor on my psyche. In the Fall I want to travel to a few academic meetings but the expense and the knowledge any and all travel is laden with problem upon problem makes me want to throw my hands up in the air and say fuck it. Back to Kuusisto: 

Its a ragged self that survives. Its one that refuses to stop insisting on full inclusion and not mingy half granted and grudging accommodations. I’ve been saying things like this on this blog for 7 years but now I’m going a step further: I’m not excusing casual hand gestures from academics or conference organizers—the old “well we just forgot” moue of false sympathy—“So sorry friend. Yes, once again we don’t have accessible stuff. We’re good people. You should like us anyway.” I can no longer afford to forgive the easy assignment of physical difference to categories of complication or inconvenience.

I am not as nice as Kuusisto. I reached this point a few years ago based on my experience at the annual meetings of the American Society of Bioethics and Humanities and at a philosophy conference held at Syracuse University. This says nothing of my experience a few years ago when I was deeply humiliated at Hobart William Smith College. I had the audacity to try and attend the Humanities, Health and Disability Study Workshop organized by Lester Friedman and Sarah Berry. The event was not accessible.  Link: http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.htmlWhat can be done? Kuusisto suggests we keep going. Fine. But I have been going to academic meetings for nearly 30 years. Access is as problematic today as it was when I started out as a young scholar. Most academic organizations tell a person such as myself to contact the hotel if I have any questions about wheelchair access. They have no information about how to get to the hotel from the airport.  No information is available about what is or is not accessible nearby the hotel or in the host city. This sort of passing the buck information blackout is the norm. I must act as my own ADA coordinator.The amount of time wasted is significant. 

In short, here I sit a middle aged scholar and I am weary. I have yet to see a world free of ableism. My aspiration to be equal to typical others will not happen. I will die as I live--estranged and excluded from much society. This social failure is unacceptable. I do not think it is too much to expect to leave my apartment and not encounter any physical barriers. I think it is reasonable to not want to be be verbally assaulted on a regular basis. I think it is grossly unacceptable to have utter strangers tell me how to live my life. I object to people who tell me I inspiring because I can drive a car and shop for groceries. I think it is reasonable to assume I can get on and off plane with being belittled.

What is a bad cripple to do? Being unstintingly polite sure as hell has not helped. I have no interest in going to endless meetings about diversity and inclusion when nothing is truly accomplished. I will not join presidential task forces of academic organizations because I know none of the recommendations will ever be enacted. Kuusisto suggests we keep showing up. I have been showing up for nearly 30 years and my presence is meaningless. Academic organizations, towns, businesses, the vast majority of our society in fact simply does not care about the rights of people with a disability. Wheelchair access is not a civil rights issue it is a problem to be managed by people without a disability. Hence the slogan "nothing about us without us". Great slogan. But how about we get shit done. Shit ain't getting done and I am getting older by the day. I am anger by the day. I am increasingly worried too. We are back tracking in terms of social and political quality. If you doubt me please talk to a black man--preferably a black man that has not been shot by the police or incarcerated. Better yet, watch the Republican Convention. Never in my life have I seen such a celebration of white privilege and visceral hatred being spewed far and wide. And tonight the Republicans will trot out Brock Mealer who will spread his message of overcoming. 

Again, what is this bad cripple to do? Perhaps we can follow Bolivian protesters lead: 

Something needs to be done. I am not suggesting disability rights activists hang themselves off the Golden Gate Bridge near Criptopia. What I am saying is what we have been for the last forty years is not working. Yes, the law is on our side. The law is far from enough. I suggest we get angry. Do not direct that anger inward as that is self destructive. Direct our anger outward. Call out ableist bigots. Reject inspiration porn. Reject lowered expectations because disability is part of life. We need to hold ourselves to the highest standards. We need to push back hard. Screw apologies. I don't want to hear excuses I want to see action. That action must take place with great haste. Long ago Ed Roberst called this cripple power. Cripple power gets things done. We have the knowledge base. We have the fire. Decades of discriminatory practices have given us much to be angry about. Do not ask for access demand it. Our demand is exactly that--a demand not a request. We are not special we are merely human. Get fired up people. Mess with bipeds. Be disobedient. Be subversive. Let's use our anger to drive a new fierce disability rights movement. We can borrow ideas from the past and create ways to shut down events that are not accessible. We can learn from our past too. ACT UP brilliantly championed gay rights during the AIDS epidemic when gay men were dying in shocking numbers. The analogy here is apt. We people with a disability are dying. We are dying of neglect and the complete dismantling of the social safety net. In its plate we are being killed with supposed kindness. Ablest tell us we have suffered enough. Out of the goodness of the ableist soul we will empower you to die via assisted suicide legislation. Sorry, but no. We are too smart and too angry to be fooled. Watch out ableists. We are disabled and proud. A whole new band of cripples is out there and we are bad asses. Screw bipedalism. Print out the below image. Make the image a sticker from hell. Plant it on doors and windows of inaccessible businesses. Post it on buses without a lift. Get assistance from our deaf peers who are indeed bad asses of monumental proportions. Don't forget our blind brothers. All media must be accessible to the blind. And, yes, they too are bad asses. Embrace civil disobedience.