Jerika Bolen and Inspirational Death

I have remained silent about a story that has gone viral. I am referring to--Jerika Bolen who is being hailed as a hero for deciding to die. Bolen has Spinal Muscular Atrophy type 2, a condition that is universally described by the mainstream media as terminal. Many people with her condition, adults mind you, have been commenting on Facebook and a myriad of other social media outlets. Unlike the press, people with a disability, especially those with SMA type 2, are upset. More than upset really. The word outraged is more apt. I share this sentiment. On Facebook Lawrence Carter Long a well regarded and well-known disability rights advocate, wrote about how the media had portrayed Bolen’s desire to die:

Vomit inducing. Ulcer creating. When the fetishization of death and disability shines a glittery veneer on the scary underbelly of inspiration porn suicide becomes a spectacle and the best response we can come up with is to roll over and fan the collective fantasy of "individual choice" by throwing a f'n party. Angry, enraged but mostly heartbroken.

Judge for yourself. USA Today, Washington Post, Huffington Post and others have all published tear jerking stories about Bolen. This link is typical of how the story has been handled.http://www.usatoday.com/story/news/nation-now/2016/07/23/more-than-1000-prom-wisconsin-teen-choosing-die/87474626/ Mainstream media outlets are universal in praising Bolen. She is described as wise beyond her years. She is lauded as brave and her decision to end her life, though tragic, is completely and utterly understandable. A river of tears is flowing and the voice of people with a disability absent. Bolen’s pain is so severe she, her mother and health care professionals all agree hospice care is the best treatment option. When I read this emotional and misleading reporting I shake my head in wonder. Inspiration porn is now being matched by inspirational death. Inspirational death typically involves a person with a disability expressing a strong desire to die. These people are inspiring.  Inspiring to people without a disability. What is consistently missing from such news stories? Voices of dissent. We cripples need not express an opinion. Our voices if heard are quickly dismissed. Bolen is different. She is brave. We are angry. No one wants to know what we think.  

Bowen is on the media fast track to death. The skids are greased replete with her final dance. Bolen is going to die. This narrative sells newspapers. Televison rating go up. The narrative is classic click bait. Newspapers, television and every sort of online news outlet is all over this story. The mainstream news is in a feeding frenzy with full media saturation. Bolen will die to critical acclaim. Until a few days ago I felt I had nothing to say because others like Emily Wolinsky  and Alice Wong have been so eloquent and articulate. Recently I read comments by Lydia Nunez who did a masterful job summarizing six points with regard to Bolen and the larger implications of such inspirational death narratives. With a nod to Nunez, here are six important points you will not read about in the mainstream press.

1.    If a typical teen wanted to die psychiatric care would be provided immediately. No person would encourage a typical teen to die.  The very idea would be deeply objectionable. All objections and any effort to seek psychiatric care go out the window when a disabled teen expresses the desire to die. No effort is made too look beyond a medical model of disability. No effort is made to seek out adults who had the same condition as a teen. Any criticism on the part of people with a disability is perceived to be in poor taste. Reaction to those people with a disability that point out life with a condition like Bolen’s remains sweet and worth living is met with hostility.

2.    Statistics demonstrate gross inequities exist when black people and people with a disability try to access health care. Health care professionals routinely ignore or minimize pain relief. Psychiatric care consults are absent or minimally provided. Blacks and people with a disability are routinely given inadequate pain relief. The majority of pain specialists contend that pain can always be effectively managed.  A pain consult in Bolen’s case seems more appropriate than hospice care.

3.    Bolen has a gofundme account. She has received overwhelming support from all over the world. Good for her. She has raised more than $33,000 in a very short period of time. However, when people with a disability try and crowd source funding to pay for life empowering adaptive equipment the return is meager at best. This leads me and many who live with a disability to question why is it easier to die than live with a disability. 

4.    Bolen is a classic case of inspiration death. Typical others are inspired when a disabled person wants to die. This thought process reinforces the widely held belief that death is preferable to life with a disability. In fact about the only time people with a disability get support of typical others is when they express a desire to die. Express a desire to live and people suddenly are very interested in the cost of care and openly question should such resources be spent on the life of a person with a disability. The implications are not subtle—our lives are less valuable.

5.    Being 14 is not easy. Ableism, racism, and mental health issues are rampant. For a teenager like Bolen to learn how to adapt to life with a disability and her place in the world is exceedingly difficult. Depression is a reasonable and treatable response.   

6.     People with a disability are subjected to routine discrimination in large and small ways. Ableism abounds. Social inequities are profound. Unemployment is the norm for people with a disability.  Most people with a disability live on the edge of poverty.  When one combines the five points above with the gritty reality of what it is like to live with a disability it is understandable why a teen could believe death is preferable to life with a disability.

The Bolen story makes no sense when one digs beneath the many assumptions made about life with a  disability. Foremost among my questions are why has the family eagerly embraced the news? If my child were terminally ill and in pain so severe the press would be last people on earth I would want to deal with. What about all the money that has been raised to date? The family has raised over $33,000 supposedly for the final dance. News reports state everything associated with the last dance have been donated to the family. I cannot imagine spending over $30,000 on a party. Perhaps the family needs money to pay for medical costs. I have no idea if this is the case. What I do know is that no one is asking the hard questions that need to be asked. Is Bolen’s condition terminal? If terminal, why have physicians been unable to relieve her pain? Is a 14 year old capable of making an informed decision about her life? Why does Bolen think her life as a wheelchair user is not worth living? Various news outlets report that Bolen has had over 30 surgeries. This seems unlikely given the fact she is just 14. Did she average over two surgeries a year since birth? In place of these questions Bolen had over 1,000 people from all over the nation attend her final dance.  Why did all these people support her effort to die. Where are the people who would like Bolen to eek out every last second of life? Where are the people with a disability who have endured what Bolen has and lived to become adults content with life? These people exist. We are among you. All you need to do is listen. 

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. 

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.

Story Telling

Like most anthropologists, I love to tell stories. We anthropologists tend to be very good story tellers. When we do ethnographic research we listen carefully. We also participate in every day life of those we study. We encourage our informants and "our people" to tell stories. We then use those stories to write about cultures different than our own. Often those cultures live in remote regions of the world. My mentor at Columbia University, Robert F. Murphy, studied the Tuareg and Munduracu. He was among the best story tellers I ever had the pleasure of listening to. Murphy could make you laugh, cry and think all at the same time. He was nothing short of brilliant. He was far from alone. Many anthropologists are truly engaging people. Most anthropologists are gifted speakers and lecturers. Exceptions exist of course. I have sat through some pretty boring and dry lectures delivered by well known anthropologists who I shall not name.

The point here is I tell lots of stories. I am an entertaining speaker which is not easy to do when I often write about end of life and assisted suicide legislation. In part I am a good story teller because I have led a very different life. Growing up I went through the medical mill. I was not expected to survive, few of us did in the era before advanced medical imaging. When I was a kid if a physician wanted to know what was going on inside the body one got a spinal tap or had surgery. I had a lot of spinal taps. I had a lot of surgery. I suffered. I endured. To cope, I became a wise ass and made a concerted effort to be subversive. As the youngest in my family, I became a skilled instigator. I put on a facade of innocence but I was a devilish kid. I had the inate ability to rile people up and appear ever so innocent. What I did not like was mind numbing routine. Hospitals, like any institution, are utterly dependent on routine. As a kid I knew exactly what time it was because hospital routine never changed. I was desperate to escape the inertia of ward life. One way I maintained my sanity was to undermine or disrupt ordinary medical examinations. There was a down side to my quiet rebellion and penchant to undermine authority. A while ago I told a story to my good friend Diane Wiener. She was quite bemused. After I told my story she asked me to retell the story on my blog. I promised to do so. I will now follow through on this promise.

This is a very old story that I have told it many times. The year was 1977. In the state of New York and many others teens can get a drivers license at age 16. I waited until I was 17 years old to express any interest in driving. I asked my mother to take me to the dreaded motor vehicle office. I had studied the DMV book and scheduled a written drivers test. I passed the test and was good to go or so I thought. The only thing left to do was demonstrate I had typical vision. A very bored woman asked me to read the fourth line on the chart. I said what line. My mother looked at me with daggers in her eye. DMV is not the place to joke around. She knew me too well. In the past I had thoroughly enjoyed undermining residents who admitted me to the hospital. When it got to a question about my hearing I replied "What?" multiple times. Some residents did not get the joke while others simply rolled their eyes and pressed on. No one was ever truly amused except myself. Keenly aware and afraid of my mother I stated all I could see was a fuzzy E. I was not joking. I was profoundly near sighted. I had spent years in and out of various neurological wards. I was so sick no one ever bothered to check my vision. This is not a complaint. Physicians were far too busy trying to keep me alive.

The lack of vision testing is clear evidence I took nonconformity a bit too far. It was also proof positive I missed most of my formal secondary education. Regardless, when I went to school with my driving glasses I was astounded. I could see the classroom board. The board was a real thing not some abstract idea teachers talked about. In geometry class I saw lines for the first time. In math class for the first time I could see the problems written on the board. In science class I could see the periodic table. I did not have to memorize the periodic table! I  missed so much school I simply assumed I had to memorize what the teacher said. I knew the board was on wall at the front of a classroom but I could not see what was written on it. I vividly recall thinking my God school just became very easy. On the rare occasion I was well enough to attend school I subsequently spent all my time letting my imagination wander. With a board I could see I no longer needed to pay attention to what the teacher was saying.

I have worn glasses every day since 1977. My near sighted vision became worse each and every year. I have relied on an increasingly strong prescription since I was a teenager. Each time I get a  new prescription I chuckle and tell my story. Every time I meet a teen about to apply for their license I tell this story. It is a good story. It is a story that reminds me that sometimes being ordinary, following protocol and routine is not such a bad thing. This is a lesson my son has struggled to learn. I guess the apple does not fall far from the tree.

Gang of 19

I have been thinking a lot about the Gang of 19. I am not referring to a prison gang or some bad ass biker gang. I am referring to a small group of people with a disability who were angry that they were dependent upon substandard paratransit in downtown Denver. The year was 1978 but the long simmering anger began in 1973. People familiar with disability rights know the story all too well and the central figures involved. It all started with 60 people. 60 angry people. 60 angry crippled people. And then 19 angry crippled people who on July 5 put their bodies on the line. Every time I get on a bus I think of the Gang of 19. Every time I go up a ramp or lift on a mass transit bus I give a silent nod of my head in respect. I can get on the bus because 19 people and their allies fought hard to insure buses across the nation had wheelchair lifts and ramps. The Gang of 19 was the epicenter of the move to make the buses wheelchair accessible. It all started at 10am at the corner of Colfax and Broadway. A small monument is at the corner with the names of the individuals involved. When in Denver I place flowers at the monument.

The story of the Gang of 19 is well known and is best detailed in To Ride the Public's Buses: The Fight that Built a Movement edited by Mary Johnson and Barrett Shaw. I remember reading about the Gang of 19 in the newspapers. I was a freshly minted cripple--I was paralyzed only a few months before when I started reading about the protest in Denver. I didn't know what to think. I was busy and  frankly did not pay too much attention. I was working hard to get through the day. I was focused on my ADLs--activities of daily living. How do I get my pants on; how do I transfer from wheelchair to car, couch, toilet, floor etc. How do I drive? How would I figure out getting around the campus of the university I was going to attend? I was about to launch my life as an adult. I was clueless about the ramifications of disability but I was learning fast. The learning curve was steep. Much of my focus was on getting stronger. I had not been medically stable for a decade. I was rail thin--I barely topped 100 pounds. Every day was a grind. Doing the ordinary was physically exhausting.

I did not know it at the time but I was about to get a crash course on disability based bigotry in NYC. After I got my BA I moved to the city. I became an EPVA bus buddy. In NYC then Mayor Koch was adamantly opposed to wheelchair lifts on the buses as were most people at the time. Like Denver, we wheelchair users forced ourselves onto the bus. The two men using wheelchairs above, one of whom is holding the bumper of the bus, were practicing a classic technique. Either one or two people using wheelchairs got in front of the bus at the same time another person also using a wheelchair got behind the bus. Effectively trapped, the bus driver had to either deploy the lift or accept the bus would not be moving any time soon. This did not endear us to irate bus passengers. I know this history well. I lived it. I was cursed out. I was spit on. I put my body on the line. I was a very minor player in a much larger civil rights movement.  I knew whose side I was one. I became enthralled with all things disability rights based. I knew in the marrow of my bones it was the right thing. I knew it was in my best interest in the present and future. Without access to mass transportation how was I going to get to work when I earned my PhD.

Fast forward to today. I have been reading about a new problem on public buses. In cities across the United States, Canada, and England mothers with strollers large and small are taking over the so called handicapped seating area. What astounds me is if a person using a wheelchair uses the lift and tries to use the designated area to sit those responsible for the infant in the stroller refuse to move. In short, people using a wheelchair are left out on the curb and have no choice but to wait for the next bus. I find this astounding. Mothers in particular were our allies circa 1978. They wanted lifts on the buses too. They supported me and countless others for not just for lifts on buses but curb cuts. While common place in every city and town, curb cuts were as popular as wheelchair lifts. They were often deemed an eye sore and safety hazard. The opposition did not last long--especially in the garment district of NYC. Add in the support of countless bikers and messengers on bikes and every city and town in America began to install curb cuts. In fact they are so common I am told learning how to pop a curb while using a wheelchair is no longer taught to newly paralyzed people when they receive rehabilitation.

I am of two minds when it comes to the culture clash between typical people responsible for an infant in a stroller parked in the handicapped seating area on the bus. First, it is now so common for a person using a wheelchair to get on a bus no one really pays attention. This is amazing. It is a concrete example of the great progress disability rights activists have made. My existence on the bus is not worthy of attention. Of course, once in a while you get a cranky biped who will say something nasty but that is outside the norm. Second, what is wrong with people? Are people responsible for the care of an infant in a stroller on a bus really that oblivious or privileged? The space on a bus for a wheelchair user is severely limited. Options are limited to say the least. Typically there is all of one or two spots to sit. The battle between wheelchair users and stroller users has reached England's Supreme Court. I suspect the same legal battle will be fought in the Canadian court system. I assume the United States will not be far behind. At issue is who has the right to the handicapped space on the bus. Is the person responsible for the stroller required to evacuate the handicapped space?  Does a person using a wheelchair have a right to the designated handicapped space?

I have no ready answer for the above questions. I have used many buses in cities coast to coast but have never gotten on a bus and had the handicapped space fully occupied by strollers. I have come across many a biker or older person with a large cart occupying the handicapped space. Some people are polite about moving while some are decidedly nasty. I am not sure why I have not encountered the wheelchair user versus stroller user yet but many others have. The social dynamic here is fascinating. Who holds more social capital? Who will get the social support from fellow bus riders? The CBC published a story about this dilemma in Winnipeg. Link: http://www.cbc.ca/news/canada/manitoba/winnipeg-transit-bus-wheelchair-stroller-manitoba-1.3663019?platform=hootsuite

While I do not have any ready solutions, I do lay the blame on secondary schools. Every school teaches children about the Civil Rights Movement. Every child knows who Martin Luther King is. I suspect every school kid knows who Rosa Parks is as well. I cannot say the same about the members of the Gang of 19. I am willing to bet virtually no school children know a thing about the fight to make buses accessible nationwide. I am equally sure children learn nothing about the disability rights movement. When my son was a boy the ADA was mentioned in passing at best. I doubt much has changed. If people absorb anything about disability during their secondary education it is most likely that the segregation of people with a disability is the norm. We have special buses for those students with a disability. That special bus is routinely a short bus. Using the short bus carries great stigma. Derogatory terms abound about the short bus. It is often dubbed "the retard bus". Countless people with a disability have been deeply scared by being forced to use the short bus. The message sent is clear and distinct: segregation is fine. Special education students use the special bus. They are a class apart. This logic carries into adulthood. I can only speculate that those who refuse to move a stroller from a handicapped area on a bus do so because they have absorbed this inherently destructive lesson. In the wildly entertaining and insightful book The Short Bus by Jonathan Mooney he wrote that the short bus:

serves a social function. Our myth of who we are, who we shall be, is actually created by categorizing people people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all out lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus policies that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us. 

The infant in the stroller is our future. The infant in the stroller is normalcy. The infant in the stroller is a valued member of society.  The infant is a future person who will be a producer of labor. In contrast, the person using a wheelchair is the symbolic representation of the limits of medical science. We cannot cure all afflictions both large and small. We are the personification of tragedy and how fate can deliver crippling blows (pun intended). Wheelchairs by themselves are stigmatizing. The key word here is negation. Bipeds only consider what a person using a wheelchair cannot do. They see a lesser human being. A lesser human being that cannot walk. We wheelchair users have an entirely different perception of a wheelchair. We love our wheelchairs. We know a wheelchair is empowering. It makes life go.

To borrow a line from the film Finding Dory "Suck it bipeds". For those who are on a bus with a stroller get out of the way. Get out of the way of every person using a wheelchair. I fought long and hard to get on that bus. I may have been a bit player in comparison to the Gang of 19 but I was in the game. I fought as hard as I could. So please just move. Take your privilege, social status and stroller and move it. Use a wee bit of common sense. Might you be inconvenienced? Yup, there is no denying that. And, had secondary schools done a better job teaching children about the disability rights movement, we would not have such a needless issue. It took decades for the bus system to be made accessible. People were arrested and laws were changed. A stealth civil rights movement took place. What we need is some serious educational reform. We can start by eliminating all so called special education buses. We can also teach children about the Gang of 19. The names of those who sacrificed so much should be as well known as Rosa Parks.

Prejudice and Alienation

I am making the transition from a rural to urban lifestyle. I no longer have a spectacular view of Lake Cazenovia. My former home was all about the view. Without the view I would not have even considered living there. The draw backs were signifiant. I was limited to two burners and a toaster oven in the kitchen. The drive way though short was steep as in cliff like decent. The home had no air conditioning and I truly suffered in the summer heat. There was no washer dryer. Going to the laundromat was consistently unpleasant. The town of Cazenovia was openly hostile to anything remotely related to wheelchair access. Despite these flaws I thoroughly enjoyed my time in rural Central New York.

I now live in a huge apartment with two female roommates within walking distance to downtown Syracuse. The apartment does not have a view. This apartment is about light and indoor space.  The interior has large windows well over six feet and the ceilings must be at least 15 feet high. This is classic loft living I call industrial chic. The building was once an iron factory and the entire area has been gentrified. I am content in my new digs. I am thoroughly enjoying urban car free life. I walk everywhere and Kate is always by my side. This move is proving to be a great transition for man and dog. The transition has been smooth in terms of logistics but Saturday was a rough day. My roommates moved in and had an army of help. The house was filled with the chaos associated with moving. Suddenly I was surrounded by bipedal people and more stuff than I could have ever imagined. I freaked out. There I was surrounded by people I know and respect and I felt very much alone. This sparked complex emotions and one sentiment became prominent--alienation. When I emotionally shut down as I did on Saturday I think back to the early days of my paralysis and my subsequent intellectual awakening at Columbia University.  Once paralyzed, I immediately knew my social stature was significantly diminished. I had acquired a stigmatized identity. I may have been the same human being post paralysis but the way I was treated radically changed. It did not take long to learn that blatant disability based bigotry was going to be a daily part of my life. Today, we call what I experienced ableism. That word did not exist in 1978. Disability rights was in the incipient stages of development. Laws were being passed that protected my civil rights but they had minimal impact on my day to day life. I grew increasingly alienated from bipedal people. I was wary of typical others. I struggled greatly as I was continually shocked by the prejudice I encountered. I spent much of my time befuddled and confused. In those early years I often retreated to my door room, smoked pot and listened to the Sex Pistols and all sorts of punk music. The nihilism of God Save the Queen appealed greatly and the line "there's no future, no future, no future for you" resonated deeply. Two things saved me from a very dark future: first, Robert F. Murphy wrote the Body Silent and encouraged me every step of the way in graduate school. Second, I was exposed to Marxian theory--especially Marx's theory of alienation. The BBC has in a wonderfully British way explained alienation as follows in the video below:

My trip down memory lane and effort to deal with an intense feeling of alienation was helped by Stephen Kuusisto. At his consistently thought provoking blog,  Planet of the Blind, today Kuusisto wrote about his trip to the west coast via Delta airlines. As any person with a  disability can attest, the airline industry is capitalism's leader in disability based bias. All airlines are openly hostile to people with a disability. I cannot board a plane as a wheelchair user without being patted down by TSA agents. In short, I am frisked every time I fly. The so called pat down can range from gross disinterest and a cursory check of my body to an aggressive maximum security style effort to find whatever the TSA agent happens to be concerned about at that second in time.  There is no support to be found among my fellow downtrodden travelers. Indeed, passengers are usually as miserable and bigoted as airline employees. Read what Kuusisto wrote here: https://stephenkuusisto.com/2016/06/27/disability-airplanes-and-my-life-as-an-object/ In short two passengers categorically refused to sit next to him because he had his superbly well trained guide dog with him. Two passengers made a giant stink about being seated next to him and demanded to be seated elsewhere. Air line attendants were forced to handle the situation and Kuusisto wisely remained quiet. What he experienced was, to use his words, "raw prejudice". 

When I read Kuusisto's post I was instantly transported back to the first day I went to college. My brother Jim helped me move in. He had just graduated from Hofstra University and advised me to arrive early. He told me to get the bed near the window. By the time my roommate showed up all my stuff was packed up and we were just hanging out. In walks in my roommate and his father. There was a weird pause and my roommate said "I am not rooming with a cripple". With that statement, he turned around and walked out. Just like the bigots Kuusisto encountered on the airplane, my roommate's bigotry was managed. Imagine a different scenario. My roommate walked into a dorm room and stated "I will not room with a nigger". Imagine a person boarding a plane and stating the same thing. "I will not sit next to a nigger". The reaction would be radically different. Outrage would be quickly expressed. Prompt and fierce rejection of such bigotry would be the expected response. Yet when disability based prejudice, raw prejudice, exists the response is muted. The problem is managed. Somehow disability based prejudice is always different. Ableism is frowned upon but not addressed directly nor swiftly.  Disability based bigotry is rarely if ever recognized for what it is--a violation of a person's human rights. My human rights were violated the day I arrived on campus in 1978. Kuusisto's human rights were violated last week.

In retrospect, I realize now just how deeply I have been scarred by 38 years of disability based prejudice. On Saturday I was in a lovely apartment with friends and my son and yet the chaos of the move and a group of bipeds made me shrink away. I retreated into a self protective shell, accustom and expecting to be hurt, demeaned and belittled. I will struggle with my reaction, clearly this was a bad day. The bad day was further enhanced by a very bad fall out of my wheelchair in the heat of summer.  I have found solace however. I know to the marrow of my bones I am not alone. Millions of wheelchair users are out there everyday fighting the good fight. Kuusisto is out there and part of a guide dog team. Deaf people are out their with their own vibrant language and culture. The disability itself, whether physical or cognitive, does not matter. Disability based prejudice shares the same hateful roots. Indeed, prejudice, that is the study of prejudice, is littered with assumptions, generalizations, and cliches. It is for this reason that Elisabeth Young-Bruehl's book, The Anatomy of Prejudice, is on the top of my reading list. Young-Bruehl examines antisemitism, racism, sexism, and homophobia in an effort to expose their distinct fulness and similarities. It is my hope if ableism can be directly connected to other forms of prejudice real social progress can be made. I must dream of a better future for those who follow me in adapting to disability. I have taken, and will continue to be subjected to raw prejudice and do so in the hope that those cripples that follow do not experience what Kuusisto and I and so many others have endured. I wear my scars proudly for others.

Me Before You: Trouble with the Truth

The above video was posted to You Tube following the red carpet opening of the film Me Before You. The fierce reaction, a hornets nest of anger, has taken JoJo Moyes and all those involved with the film by surprise. Disability activists have staged protests from coast to coast. To say I am proud of my fellow cripples would be a massive understatement. Facebook, twitter, instagram, thunderclap, and more social media sites than I know exist are afire. Hundreds of people who write about disability on line in various traditional and nontraditional platforms have eloquently expressed their disdain for the film and book. This I anticipated. I read the book about two years ago. Last year I heard Me Before You was going to be made into a movie. I knew it was coming. I dreaded its release. I saw the trailer and cringed It was as bad as I expected.  What I did not expect was the mainstream media's perspective on disability rights protests. I am taken aback. Mainstream media outlets have respectfully discussed why people with a disability have reacted with anger and outrage. I need not provide links--there are too many. I never thought I would live long enough to see good articles from outlets such as the Washington Post, Guardian, Telegraph, Globe and Mail and many others. There are of course many dreadful articles in press. The comment sections are a battle ground as one would expect. Romance novel and film enthusiasts who love JoJo Moyes work are viciously nasty. Ableists, with the freedom anonymity brings, are over the top in spouting hatred. The message is clear--death is preferable to life with a disability and we cripples need to shut up or die. Our opposition to assisted suicide legislation is despised. Ableists think our opposition is born of baseless paranoia or we are so embittered that we want other people to suffer like us. Harsh if not hateful words are hurled our way.

What I find fascinating is the failed efforts to spin the book and the film by its makers. These efforts have been comically bad. Thea Sharrock, the film producer has argued there has been a "fundamental misunderstanding of what the message is" on the part of disability activists who have  had the audacity to protest and critique the film. Initially those involved with the film, Moyes, Sharrock, Sam Clafin, and Emilia Clarke told the media and people with a disability to read the book, see the movie.  Not surprisingly people with a disability had in fact read the book and seen the film. We hated both and were vocal about it. The next effort to dodge the outrage and increasing media criticism was to flat out lie. Moyes has repeatedly maintained she received a great deal of emails from people with various disabilities, even those who were quadriplegics, and they loved the book and film. These people remain silent and unidentified. Her tone was condescending. It was as though she were an adult and talked to we cripples like we were children.

The video above shows Moyes being confronted by Liz Carr stating she had never heard from anyone who thought the film implied people with a disability were better of dead than disabled. This is false. Dominick Evans contacted Moyes earlier this year via twitter and a blog post that was widely read. He expressed his grave concerns to Moyes directly. Evans recalls that he:

reached out to Jojo Moyes the author and screenwriter on Twitter. When I did so it was pretty horrible, because even though I was very respectful in what I was saying a lot of her fans jumped on me and were very rude and hateful to me. It got so bad that Jojo herself ended up apologizing for them. She asked to speak to me in DM and I shared my concerns with her for about twenty minutes, when we went back and forth discussing the book and the overall storyline.I was really disappointed when Jojo was confronted by activities at the UK premiere last week, because she told them this was the first time anyone had told her such grievances. She was unaware that I am friends with many of the protesters, and these comments were caught on a video recorded by Channel 4 in the UK. When a lot of my friends and fellow activists saw her downright lying, because they remembered my conversation with her back in February, people made me aware of her comments, and we all started calling her out for the lie. It is especially frustrating because when we spoke she said that she heard our concerns and was noting them for future projects. How can anyone believe that, when she won’t even be honest about the fact that we had a conversation in the first place?

When lying failed and was exposed those involved in the film began stating that the film was about one man, one character, and one person's individual choice. Frankly, I found this to be a ridiculous line of reasoning. The film is but one of many to celebrate the death of a disabled character. More to the point, the film does not exist in social isolation. A message is being sent: it is about one man, a fictional character, who finds his crippled existence so devoid of value that he fights to end his life. This man however is not your ordinary quadriplegic. He is unimaginably wealthy. He lives in a castle. He has access to a private jet. A gorgeous woman has fallen in love with him. Everyone knows this is not how your average quadriplegic lives life. Most quadriplegics are poor and many live in poverty. Some quadriplegics live in nursing homes. Most quadriplegics are unemployed. The symbolism here is overt. Quadriplegics can't do anything. They can't wipe their own ass. They can't get dressed. Some of them need life support. The horrors abound. Moyes and company create the one quadriplegic on earth that has it all and he wants to die.  If the character Will Traynor wants to die then surely your average quadriplegic must be eager to die and lives a nightmare like existence.

This is not about one man and one fictional character in a Hollywood tear jerker. A message is being sent and hordes of bipedal movie goers are getting the message: death is preferable to life with a  disability. Quadriplegia is the ultimate human horror story. A film analogy is apt here. In 1967 Spencer Tracy, Katherine Hepburn and Sidney Poitier starred in the film Guess Who's Coming to Diner. The film is a classic. It won two Academy Awards and addressed the controversial issue of interracial marriage. If we follow the logic of Sharrock, Guess Who's Coming to Dinner is about a fiancee who is introducing her future husband to her parents. It is just her story and her experience with her parents. The film has nothing to do with interracial marriage. This is laughable.

So why did Moyes film go off the rails? In light of the many critiques a few reasons emerge. First, a healthy dose of sexism comes into play. It is easy to dismiss romance novels. Chick lit is simply not subject to serious analysis. Second, a mass market mainstream Hollywood summer movie garners a lot of attention. Millions of dollars are at stake. The production cost of the film was $20 million. Tear jerkers draw large audiences and the film has already made money. In its opening weekend the film has earned $27 million. Killing disabled characters in films sells tickets. Third, Moyes never bothered to talk to any people with a disability. Dominick Evans noted: "a non-disabled person wrote this story. A non-disabled person directed this film. A non-disabled actor portrayed the disabled role". No movie about a member of a minority group overcoming gross civil rights violations would be made without an actor from that minority group. I recently saw Race, the biopic about Jesse Owens. A white actor could never be considered. The sole exception here is Hollywood is quite content to have non disabled actors play characters who are disabled. Fourth, the character Will Traynor, who Moyes says was inspired by the case of Daniel James, is more similar to Christopher Reeve than James. American audiences will recall Reeve and have no idea who Daniel James was. Fifth, money is an insulator. Like Reeve, Moyes did not make any effort to interact with other people with a disability. Reeve wanted to be cured. His post injury life consisted of nothing else. Moyes was similarly focused and insulated. She did no research. She worked within a medical model of disability. All Moyes saw was pathology and imagined what quadriplegic life entailed. Moyes is ever so typical of what people see and think when an obvious disability such as quadriplegia is subject of discussion. She sees what cannot be done. In contrast when I see a quadriplegic I wonder about the level of injury and what they can do. As I age I am also a little envious. Power wheelchairs today are powerful, can go fast and far. More than once crossing campus at Syracuse University and heading directly uphill I think a power chair is enviable technology. Oh what people miss--the very humanity of people using what I consider to be cool technology.