Letters to Young Cripples

My good friend Steve Kuusisto has been posting "Letters to a Young Cripple" on his blog Planet of the Blind. I find his words deeply moving. We hatched the idea drinking beer in a brewery. That is what good academics do. Drink beer and  in our case work on the art of disability. I am not sure any bipeds appreciate what we do but I sure do enjoy life. I have a series of such letters written and this will be an ongoing theme.

Letter one.

Young cripples. You are hated by many. You sense this. You may directly experience hatred. You likely have been segregated to “resource rooms” and deemed “special” in secondary schools across the nation. You are often the only cripple present--the lone person using a wheelchair. You feel lonely and isolated.  I feel this too. I feel loneliness in the marrow of my bones. Get over it. Do your best. Try hard. It is okay to fail. I have failed to get over a feeling of alienation my entire adult life.  I hope you will not feel the same when you are as old as me. This is probably not going to happen but you can hope. I hoped, and believed, I would be equal someday in my lifetime. I no long believe that. It is a bitter pill to swallow.

Never given in to the hatred. Never give in and accept less in life. When you are given what superficially appears to be a good deal stop and think. Cool you are going to be the only kid who will get a taxi ride to school. No bus rides. No bullies. Why the largesse? Some typical other person in authority is too cheap to authorize a lift on the bus. You are not worthy of the expenditure. You are less. Fight back with vigilance.Do not accept crumbs doled out to the crippled so we are not seen and supposedly treated with selective kindness.

Forge ahead on your own. Let Mom and Dad go. They will not be able to advocate for you someday. I hope they have taught you how to self advocate. Like it or not, you will spend enormous amounts of time advocating for yourself and others like you. The world, both physically and socially, has not given you any consideration. Our physical structures remain largely inaccessible. Our social environment is hostile and you will encounter ableism at every turn because it is built into the fabric of society. You need to face ableism head on and do your best to undermine it in any and all ways. You are not just one person. You represent others. If people tell you that you have a chip on your shoulder you are doing something right.  When a biped tells me this I reply I have a boulder on my shoulder. Being angry is healthy. Social injustice does that to people. You will encounter social justice—it is part of a cripple’s life.  

Never forget our people. We are largely poor. We are unemployed in large numbers. We are white. We are black. We are fat. We are thin, tall, ugly, gorgeous, and more. We are simply human. Never forget you are a human being—homo sapien sapien. We are symbol builders and tool makers. Most of all we are adaptable and wildly creative. Embrace the art of disability. Embrace it because you will wake up in the middle of the night alone. You will think “I must be wrong. I am not fully human. I am a rotten person. I am a drain on others.” Don’t go down that rabbit hole. You are a good person. You have human rights. Oppression is wrong. Ableism kills. Do not give typical others the satisfaction. Resist.

 

Ableism and Mass Murder

This morning I went for a walk with my beloved and aging lab Kate. We stopped in our usual shady spot on the Onondaga Creek walk. I was facing the water as was Kate, our backs to the path. I heard a bike approach and stop directly behind which is unusual. My first thought was is this person going to kill me. I shook my head mad at myself for having such an irrational thought. Then I thought again. While my fear disappeared as fast as it appeared I felt the sting of disability based bigotry. Today, most typical people have no clue what ableism is. Most people when they hear the term roll their eyes and mutter something about political correctness run amuck. Some get angry. How dare I equate ableism with other racially based crimes. More than once I have heard "The KKK never set a cross aflame at your home". When it comes to disability rights, the anger is an ever present under current to my presence and the presence of those with a very different body. Anger is like a snare trap ready to snap at a moments notice. The smiling look or offer of help when declined can turn violent in a heart beat.  In Japan, we saw the most violent form of ableism. Others I respect saw it to. A few of us have written about it. I suggest the below links:

http://annieelainey.tumblr.com/post/148068421274/ableism-mass-murder-and-silence

https://disabilityvisibilityproject.com/2016/07/27/ableism-violence-sagamihara/

https://psmag.com/violence-disability-and-the-lessons-of-sagamihara-fcd790a4285d#.k0q0sqkg5

http://www.forbes.com/sites/emilywillingham/2016/07/27/killer-of-disabled-people-in-japan-announced-his-intentions-months-ago/#7d573d652942

http://www.autistichoya.com/2016/07/ableism-is-not-bad-words-its-violence.html


The hate crime in Japan graphically and horrifically demonstrates that people with a disability are prone to being the victims of violence. That violence includes murder. How many more people need to die before ableism is acknowledged as a global problem. The violence I refer to takes many forms. Hollywood knows films that kill disabled characters for their own merciful fend of life resonates well with audiences. Police in the United States have killed  host of people with a disability. Parents who murder their disabled children are given light sentences for their crimes. Donald Trump openly mocked a disabled reporter from the New York Times. Most recently the video of a man trying to help an autistic client of his was shot. The police bemoaned the fact they missed the man with autism. They tried to kill him. Yes, their intent was to kill a man from a group home with autism that was playing with a toy truck. This sort of violence is spun in a myriad of ways. It also appears as if the massacre in Japan has lost the media's attention. There is no live coverage on CNN. It appears as if the next big story to get media saturation is the Democratic convention. So much of honoring or valuing the victims in Japan. I can anticipate it now. Stories will become increasingly infrequent and then cease all together. In less than a year few will remember. I will remember. My people were needlessly killed.

While it is easy to second guess, there is no question the massacre in Japan could have been prevented. The fact is that here and in other industrial nations we do not value the human rights of people with a disability. We do not think of human rights and disability rights to be one in the same. We do not think people with a disability could be and are victims of hate crimes. Virtually no mainstream media outlet includes a headline with the words "hate crime" when reporting about the mass murder in Japan. Look at the time line I have created based on reading dozens of stories.

Uematsu was employed by the facility on apart time basis starting December 2012. He had temporarily worked at the facility the previous summer.

April 2013 he was promoted to a full time position

In 2014 he began to make comments to his fellow employees that indicated deep animosity and hinted at violence against the people he was employed to care for.

"Don't you think that it is meaningless for disabled people to live?"

"Don't you think  that it is better for the disabled to die?"

In February 2015 he started to distribute fliers to houses in the area that boldly stated "It is useless for disabled to live".

On February 15 he tried to deliver a letter to the official residence of the Lower House speaker in Tokyo's Chiyoda Ward"

On February 18 he told staff member where he worked he would "carry out the mass murder of severely disabled people at any time if I receive an order from central government". 

On February 19 Uematsu was forcibly hospitalized on an emergency basis.

On February 22 he admitted that something was wrong with him. He was transferred to a different hospital and released on March 2.

Things get hazy here. Uematsu was supposed to live with his parents. Contradictory reports abound. One consistent theme remains clear. He continued to make threatening remarks about killing people with a disability. In short, for well over a year Uematsu made remarks that were clearly hateful and threatening. No one investigated. No one followed up post forced hospitalization. No one has made an effort to know what if any medications he was taking. The only mention of medication is related to marijuana and that he tested clean of usage. He has expressed no remorse. He readily admits to the murders.

Replace the word disabled with black or any other other minority group. I find it hard to believe an investigation would not have taken place. There is  much bigger story here. A bigger story that no one wants to engage in. Like Lydia Brown, there is no question in my mind ableism is not about bad words but rather its violence.  In no uncertain terms Brown wrote:

Don't. Dare.
We are not some innocent angels untouched by the realities of the world around us. 
We are not unaware or oblivious to the existence of others, let alone of hate.
We know hate and we know violence, because it is written on our bodies and our souls.
We bear it, heavy, wherever we go. Ableism is the violence in the clinic, in the waiting room, in the social welfare lines, in the classroom, in the recess yard, in the bedroom, in the prisons, in the streets. Ableism is the violence (and threat of violence) we live with each day.
Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives -- they must have had it so hard, it must have been such a burden, you musn't judge unless you've walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)
Ableism is the fact that a police officer who shot an unarmed Black man with his hands up decided it made more sense to claim he was actually aiming for the Brown autistic man holding a toy truck beside the Black man.

Think about this long and hard. Everywhere I go I am hated. My presence is a never ending afront to others. Few want to kill--I hope. But never am I expected. I am never wanted. Never.  My existence is a tragedy. My life lacks value. I suffer daily. Hollywood reinforces this repeatedly via films like Million Dollar Baby and most recently Me Before You. I attend academic conferences and am routinely the only wheelchair user. Conference organizers never know anything about access. Call the hotel I am told. I also hear a lot of sorries. Sorry I am told I have never had a wheelchair user board a plane, train, bus or check into a hotel. Sorry I am told by zip cars we never had a customer request a car with hand controls. Our nearest car is in St. Louis. I want to see the local AHL hockey team play. I call the gate because you cannot order tickets online like every other human being. I must call the box office so "superior service can be provided to our special guests". No one returns my call. There is a never ending string of violations. Many are small and I have lost an ocean of time over the years. I have however avoided physical violence. For that I consider myself lucky. For if I have learned one thing it is that no one is kind to the handicapped as I was once told by a relative. The reality is the world is consistently hostile to the presence of people with a disability. I have seen the very worst of humanity on a regular basis. I have seen the worst parts of the best building because that is how I routinely enter building. The backdoor, side door, and special lift is an ever present and far from subtle fuck you. I have been subjected to cruelty. I have been yelled at, spit on and once had a very drunk man urinate on me when I was in a lift. What I refuse to do is bend or yield. I am a human being. I do not care one iota if others hate me. What I am and will always be is a human being like those that hate the fact I exist. That hatred can be ever so pleasant in the form of Peter Singer, a do gooder that turns violent because I have refused "help" with the door or it can be a man in Japan who apparently slit the throats of 19 still un named human beings in Japan. The ugliest side of humanity is an ever present part of my life. Today I felt primal fear. Who knows what tomorrow will bring. Perhaps a typical biped will yet again tell me what to do because I clearly have no autonomy or control over my own life. 

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: http://www.dailymail.co.uk/news/article-3707721/Stabbing-horror-Japan-leaves-19-dead-45-injured-knifeman-attacks-centre-disabled-people.html#ixzz4FWo7VWNe

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: http://davehingsburger.blogspot.com/2016/07/japan-hate-and-12-days.html

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.

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.