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Tuesday, July 26, 2016

Satoshi Uematsu Letter

The UK Daily Mail has published the letter written by Satoshi Uematsu who has been arrested for the mass murder of 19 people with a  disability. The Daily Mail is not the most reliable news source. Given the international attention the killing spree has gained I feel it is not premature to post the letter as reproduced in the Daily Mail.Link below the letter. 

The letter is chilling. Ableism in its most deadly form. 

Dear Lower House Speaker Tadamori Oshima,
Thank you very much for reading this letter. I can wipe out a total of 470 disabled individuals.
I am fully aware that my remark is eccentric. However, thinking about the tired faces of guardians, the dull eyes of caregivers working at the facility, I am not able to contain myself, and so I decided to take action today for the sake of Japan and the world.
My reasoning is that I may be able to revitalize the world economy and I thought it may be possible to prevent World War III.
I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.
I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.
Would Mr. Tadamori Oshima, who bears the world, use his power to make the world proceed in a better direction? I sincerely hope you would deliver this message to Mr. Shinzo Abe. This is the answer I reached after serious thinking about what I can do for humankind.
Dear Lower House Speaker Tadamori Oshima, would you lend your power for the sake of dear Japan and all humankind?
Please give this full consideration. Satoshi Uematsu
The Plot: It will be carried out during the night shift, when staffing is low. The target will be two facilities where many multiply disabled people reside.
Staff on guard will be strapped with cable so they can't move and can't make contact with anyone outside. The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.
In carrying out the act, I have several requests. After my arrest, my incarceration should be up to two years, and please let me lead a free life afterward. Innocence on grounds of insanity. A new name (Takashi Iguro), government registration and documents such as a driver's license needed for everyday life.
A disguise for regular society through plastic surgery. Financial aid of 500 million yen ($5 million). I would like these conditions to be promised.
If you can make your decision, I will carry it out at any time. Please consider this fully for the sake of Japan and world peace.
I hope with all my heart that this can be discussed with Prime Minister Shinzo Abe, although I am sorry to trouble him in an unimaginably busy schedule.
Satoshi Uematsu

Read more:

Ableism is Deadly: Mass Murder in Japan

The mass killing  of people with a disability in Japan is global news. International news sources have reported the basics. A 26 year old man, Satoshi Uematsu, a former employee who worked at Tsukui Yamayuri En facility for people with a disability killed nine men and ten women. The age of the murdered men was between 41 and 67. The age of the murdered women was between 19 and 70. At least 20 other people with a disability were severely injured and six others were not seriously wounded. Uematsu murdered the men and women with one of three knives he carried. According to various Japanese news outlets he slit the throats of his victims. The murders took place in the middle of the night when staffing was at its lowest. No staff members were injured. Uematsu was a former employee. He worked at the facility from from December 2012 to February 2016. Approximately thirty minutes after the killing spree Uematsu surrendered to the police. Nearly one third of disabled residents were murdered. These bare bone facts are sure to change as police in Japan investigate further.

There is no question this was a hate crime. Uematsu sent a letter to a Japanese lawmaker in Tokyo and explicitly stated "the elimination" of the handicapped was in the best interests of the disabled themselves and society in general. Multiple news outlets in Japan have quoted sections of Uematsu's letter:

As to my goal, with the daily lives of persons with multiple disabilities being extremely difficult in the home, I would like a world where [a disabled person] can be euthanized with the consent of a guardian". 

Uematsu signed this letter. He included his address on the letter. The letter was sent to the Kojimachi Police Station.  At this time it is not know what if any investigation took place. According to various news reports in and outside of Japan Uematsu claimed he could kill up to 470 disabled people in two facilities. He thought "mercy killings" could improve the economy and that he should be found innocent of any crime and be given a monetary award.Some news outlets state Uematsu was temporarily placed in a mental institution once his words were investigated but this may or may not be true.

This hate crime and mass murder led to a sleepless night for me. What took place could have happened in any nation. It could have taken place in Omaha, Nebraska, Cambridge, England, Paris, France, or Syracuse, NY. As I read story after story I felt a chill go down my spin, diffuse at T-3 when I read the following words:

He was just an ordinary young fellow.

I have no doubt he was an ordinary young fellow. That is what makes ableism so frightening. People, typical people, think life with a disability is worse than death. I plan to go out to lunch with my son, We will likely stop at a cross walk and wait for a light to turn. A biped will likely stand near me. That biped might be thinking "shit, if I were paralyzed I would prefer to be dead. That guy should be dead. He sucks up too much health care dollars". This is what scares me. The silence. How many silently wish we people with a disability did not exist. My concerns are shared by many who have a disability and more generally any person with an atypical body. Dave Hinsburger wrote:

when you read what he says, what he says isn't far from what most people have come to believe. His statement to the police upon turning himself in that 'it's better that disabled people disappear' isn't a deranged rant by someone out of control, it's a calm statement of fact that echos the sentiment of many in society. People with disabilities know this sentiment, we hear it, we experience it and we have come to fear what it will do. Our lives are devalued, are needs seen as special and therefore burdensome, our rights are declared to be gifts rather than guarantees. Link:

The killing of people with a disability is rarely if ever framed as a hate crime. No, typical others love us. They care about us. They always have our best interests in mind. It is out of kindness typical others soul that leads them to prefer we die. It is routinely couched in polite language and euphemisms. Read about Jerika Bolen and Tim Bowers and Christina Symanski. Read about any of the men and women killed by Jack Kevorkian. Read the work of any kind hearted utilitarian philosopher from the well-known Peter Singer to the more obscure philosophers located at prestigious universities across the globe. All things considered they say as part of a congenial discussion it would be better off for all if you were dead or allowed to die as a child. If you think I am exaggerating I suggest readers go and take a look at Harriet Mcbride Johnson's memoir Too Late to Die Young or her splendid essay in the New York Times about her encounters with Peter Singer.

Ableism kills. Ableism is lethal. Parents who murder their disabled children routinely are given light sentences when convicted of murder. Bonnie Liltz comes to mind. Sympathy rests with the parent and not the victim. Disability is ever so burdensome. Life is inherently less. This theme has not changed appreciably in decades. Indeed, the belief that life with a disability is a fate worse than death is spreading as the notion of a good death has gained popularity. The vast majority of young college age students I teach firmly believe death is a right and that the safe guards in assisted suicide legislation are more than adequate. Opposition to such legislation is perceived to be the product of extreme or unbalanced belief system such as an extreme religious viewpoint. When I state people with a disability have good reason to be concerned this point is dismissed. Not long ago I had a wide ranging discussion with my brother who told me "everyone is kind to the handicapped. I see it all the time. You are so angry". In other words I am not a reasonable person if not hopelessly unbalanced.

I realize I am preaching to the choir. But for those who want to dismiss my words think about what took place in Japan. I am sure the letter Uematsu will be released soon. Don't dismiss what this man wrote as simply part of a severe mental illness. What he did and wrote is very real. He was rational and followed through on a well thought out plan. People do in fact firmly believe the lives of people with a disability are less valuable. Some believe my life has no value. I can imagine some might refuse to believe this and might say "bull shit". Sorry but no. This is factually correct. It is not a belief. It is a fact. Twenty nine murdered people in Japan can attest to this. The people Jack Kevorkian killed are more proof. Jerika Bolen might be proof. Tim Bowers surely is proof as his family persuaded him to die because they firmly believed life with a  disability was a fate worse than death. Hence, I ask how many more people with a disability need to die before ableism is a concept every person in America is intimately familiar with.

Monday, July 25, 2016

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. 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. 

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.

Friday, July 8, 2016

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.

Wednesday, July 6, 2016

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:

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.