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Thursday, July 21, 2016

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: 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. 

Tuesday, July 19, 2016

Inspiration Porn at the Republican Convention

The Republican National Convention started yesterday. I have not addressed the election process beyond a few comments on various social media outlets. The only time I wrote about the election was a few months ago when Trump mocked a reporter with a disability. Each day the election seems to reach a new low. Top put it mildly, I am no fan of Hilary Clinton. I like what Bernie Sanders has to say and think he is stating truths that need to be said about the way this country is being governed. I am obviously drawn to his critical comments about capitalism and the disparity between the rich and poor. But would I vote for Bernie if he ran for president? I don’t know and it appears I will not encounter that quandary. Hilary Clinton will be the Democratic Party representative. I find this depressing. The alternative, however, Donald Trump, is unimaginable. Trump is an embarrassment of epic proportions. I watched in horror as Trump and his running mate Mike Pence were interviewed on 60 Minutes. As reality television goes it was classic, as a political venue it was an abomination. Trump talked over Pence and the interviewer Leslie Stahl. He repeated the nonsense he has been saying for months. Trump is a demagogue on steroids. I need not mention other demagogues who have risen to power in this country. They are mostly relegated to cautionary tales and serve as footnotes to how wildly wrong the American political system can operate.

There is a remote possibility history will be made this week at the Republican convention. History here meaning the Republican establishment will somehow derail Trump as its nominee. It is far more likely, inevitable perhaps, that the Republican Party will continue on its current course and nominate Trump as the Party’s candidate of choice. Based on the hatred spewed by a host of abysmal speakers last night on day one of the convention the election truly looks like it will take the form of a warped reality television show.

Regardless of what happens over the next four days I will have the convention streaming live on my computer.  Conventions are tedious affairs and typically they are carefully scripted. Not this year. Trump repeatedly hits new lows with his senseless rhetoric and aversion to the truth. As I glanced at the list of speakers one name struck a bell—Brock Mealer. I had no idea why the name was familiar and quickly googled his name. In seconds I knew who he was. In 2007 Brock Mealer was in a deadly car crash. His father, Dave Mealer, was killed, as was his brother’s girl friend, Hollis Richer.  Brock Mealer experienced a low-level spinal cord injury (T-12/L1). Doctors told him he had less than a 1% chance of walking again. Of course Mealer figures into that 1% That is why he has been in the news. Over the last decade dozens of stories have appeared in the mainstream press about Brock Mealer. The story is always the same. Mealer defied the odds and has walked again. He regained the ability to walk via hard work. He refused to accept the fact he was paralyzed. Bipeds love these stories.  This sort of inspiration porn abounds and tears are shed in voluminous quantities. The Mealer family represents the very best or worst inspiration porn has to offer. The family is from good midwestern stock—think Normal Rockwell painting. They are white. The Mealer family men are all tall, muscular football players. The family is in the construction business. They make things. They repair things in an emergency. They are Churchgoers. The family is a pillar of the community. The fatal accident that ended the lives of two people took place on the way to Christmas party for goodness sake. Of course Brock Mealer overcame his injury. He is a hard working boy who unlike most lazy crippled people worked harder than anyone else ever has.

A few years post injury Brock Mealer accepted an invitation to lead the Michigan football team onto the field before 113,00 cheering fans. Of course he walked to midfield using a pair of canes. His mother and two brothers flanked him. Think Rudy like simplicity with a healthy dose of Christopher Reeve, Super Man, effort. Damn it, I refuse to accept the fact I will not walk again. Cheers abound, as did glowing newspaper and television stories about how Brock refused to accept the fact he was paralyzed. He overcame! He wore a shirt that proclaimed “1%--Glory God”.

Judge for yourself:

Hollywood could not have made a better script. In various stories published over the years much credit has gone to Mike Barwis of Barwis Methods in Plymouth Michigan. Barwis met Brock when he was still in a hospital bed in 2008. Barwis stated he knew Brock had the fire and determination to walk again. “I saw his willingness to work and his unwillingness to submit to the fact he was going to be paralyzed”. The timing was perfect. Insurance had just finished covering physical therapy. In steps Barwis, who had never worked with a paralyzed person before. Of course Brock did not stop working in 2010. Two years later he walked down the aisle at his wedding. This story is replete with the below photograph:

Inspiration porn of this sort is soothing to those that know very little or nothing about disability.  In no way am I questioning the integrity of Brock Mealer and his family. I am sure they are good people. Not just good as I noted already. The family is a pillar of the community.  I am equally sure Brock wants to make the world a better place. He is an inspirational speaker. He wants others to inspire others. This is a simple direct approach. It works too. To reiterate, my critique is not about Brock Mealer and his family. My critique is that life in general and life with a disability is far more complex. Remember, Mealer is in the one percent. 99% of people who experience a serious spinal cord injury remain paralyzed. Hence when I read about Brock Mealer I think about how much more complex paralysis has become. I was paralyzed long ago when one either had a complete or incomplete injury. Today we have an ASIA Scale that illustrates the wide range of paralysis. 

I am thrilled by the broad based advances in medical treatment when a spinal cord is damaged. I am delighted Brock Mealer has been able to recover what appears to be a useful bipedal gait. He is a direct beneficiary of the great advances in medical care.  To reiterate yet again, my critique is not about this man or his family. What is lost is the fact life is needlessly difficult for those men and women not in the 1%--men and women who have adapted to paralysis.  This is not easy. The hard part is in small part physical. There is much to learn post spinal cord injury. Some adapt quickly, others adapt slowly. A small percentage do not adapt.  It is the outliers that draw attention. Mealer has gotten a lot of attention. He will be speaking at the Republican Convention on Thursday. The Trump campaign wants him to tell his story. In the Detroit Free Press Mealer stated: “One of the things that is going to be in my heart to speak about my faith. There’s certainly a lot of bad news out there in the world, and I’ve really had a powerful message to share. I’ve been blessed with so much, and I really would like to share one of the positive stories in the world in the hopes that somehow, some way, things can be better and be better”.

In the Detroit Free press Brock Mealer dismisses out of hand the fact Trump has mocked a reporter with a disability. He suggests that the candidates have all had their fair share of mishaps and misunderstandings. In part the Trump campaign contacted Mealer through his aunt, Sandy Mealer Barber who is the Republican Party chair in Fulton County Ohio. I understand why the Trump campaign wants people with a disability to be a visible presence. Disability, more than in most elections, has become an issue.  The Clinton campaign has a well-received commercial entitled Grace that attacks Trump.  

I do not care one bit about Brock Mealer’s political beliefs. I do care about the simple and misleading message he is conveying. A tiny minority of people who experience a spinal cord injury get movement back. An even smaller percentage like Mealer are able to ambulate in a way that is of use. The reality is most of us do not achieve such recovery. This is not because we did not try hard enough. It was not because we were inferior beings and could not will our body to move as Christopher Reeve once claimed. What most people do is adapt. We move on with life. We master the art of the disability experience. We direct our anger against ableism. We call out disability-based bigotry. We embrace a social model of disability and refuse to be bullied at home, school, and work. We fight an uphill battle against social oblivion on a daily basis. We navigate a world hostile to our presence. We advocate that out built environment be made accessible for all via inclusive design.  We get married, have children, support our families, and work hard. Yet we are a class apart and our civil rights are protected by a bevy of laws passed in the last 40 years.

All the laws and social progress have been hard fought victories. Yet, as I age I am forced to acknowledge I will never be equal to the bipeds that surround me. The law is on my side but there is no social mandate to support and enforce the law. Just this week I wanted to attend the Onondaga Regatta. It was a big affair nearby. It was not accessible. I was thinking of going to the annual meeting of the American Society of Bioethics and Humanities in Washington DC in the fall. The hotel selected is largely inaccessible and the ASBH itself is hostile to the inclusion of disability as a subject matter and especially hostile to academics with a disability. Indeed, every day I must stop and think—how can I avoid disability-based bigotry today. I typically cross off many restaurants nearby because they are not accessible or the aisles so narrow it is impossible to navigate. None of this will fit into Brock Mealer’s talk. I have no doubt tears will be shed. He will be hailed as inspirational. None of the issues I am forced to deal with, the disability-based bigotry that is rampant, will be mentioned. The message is short and sweet. I overcame. I am strong. I worked hard. The obvious extension of this logic is those that use a wheelchair are lazy scam artists. Sorry but no. The reality almost all people with a disability deal with is far from the rosy message of overcoming with hard work. We overcome for sure—we overcome disability based bigotry called ableism. It is a word many people have never heard of. Ableism is not part of civil rights education in secondary schools. It is a concept many people without a disability forcefully reject. It is a word I embrace. It is a reality I have spent most of my life fighting. It is my hope to live to see the day when ableism no longer exists. I assume I will not live that long but I can still dream.