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Saturday, December 14, 2013

Humor Escapes Me: Limping Chicken Takes a Piss

I am still upset about the fraudulent interpreter at the Mandela memorial service. Unsavory details are  being reported about the man in question. I have no idea if the news being reported is correct. Among the conjecture being reported is that he was supposedly hallucinating at the time and has a serious mental illness. Rumors suggest that ten years ago he was charged with murder. These facts are of interest and important but it is far too early to separate fact from fiction. I am sure scholars such as Lenny Davis who has studied mental illness from a disability scholarship approach and has written extensively about deaf culture will follow this story. What is of interest to me is the public reaction to the incident. The fraud has become the fodder of late night comedians her and abroad. I saw Stephen Colbert mock what took place. I was not impressed. Sorry but I find absolutely nothing funny about what took place in South Africa. All I can think of is the few deaf people I know and how they struggle to communicate in the hearing world. I wonder why is ASL not taught in every elementary school in America? Most importantly, why has the fraud become a joke?

Donna Williams at the Limping Chicken has a post in which she too sees nothing funny about what took place. Link: Williams took the British comedy awards to task. According to Williams, "Paul Whitehouse picked up an award for Best Sketch Show for ‘Harry and Paul’, and congratulations to him. Where he went wrong was when he arrived on stage, announced that he ‘had brought his signer with him’ and proceeded to give his acceptance while an actor pretended to interpret next to him, fake interpreter style." This is not funny. It is ignorant and I find nothing funny about ignorance. Williams deconstruction of this skit and its larger social significance is spot on. I urge readers to follow the link above. Williams writes no humor was involved: 

Because having someone standing there, pretending to sign, is taking the piss. And not in a good way. Every day deaf people who use sign language have to put up with discrimination and hearing idiots taking the piss. The people laughing have clearly never had to deal with random hearing people who thought they could sign after a few drinks, and got confused and upset when I had no clue what they were saying – shouldn’t I be able to understand them, they were signing?! Most deaf people I know have similar stories; meeting random hearing people – drunk and sober – who thought that waving their hands about constituted structured language. That’s not to mention those who just wave their hands about in a mocking manner and laugh in our faces. As should be obvious by now, sign languages are ‘real’ languages with grammar, structure and syntax. It’s not waving your hands about. Maybe I’m missing the joke. Clearly, the joke was directed not at sign language and deaf people, but at the lousiness of the ‘signer’ who somehow, incredibly, managed to find himself on a world stage. That’s hilarious, right?
Again, there is nothing funny about what took place. I cannot and will not celebrate ignorance.  Now I may not use the term correctly, I am not up on British humor, but I like the line "take a piss. So for those that find humor in this story go take a piss.

Thursday, December 12, 2013

Why Disability Rights Remains An Uphill struggle

As many people know, at Nelson Mandela's memorial service in South Africa a fake interpreter was present. I leave it to others far more familiar with sign language and Deaf culture to detail what took place and why.  Suffice it to say I was dismayed--shocked really that such an obvious fraud could take place. In following this story I was equally shocked that the Today show would make a joke about the incident. I will admit I do not understand the appeal of morning television programs. I am a morning person and wake up in the go mode. The idea of sitting in front of a television in the morning is foreign to me butI know morning programs are big business.

Yesterday the the hosts of the Today Show were discussing the fraud that was perpetrated and a person popped up in the corner of the screen and began making mock sign language gestures.

How could a bland morning show such as the Today Show geared to appeal to all Americans mock such a fraud. I will give the hosts credit. Within seconds they knew the so called joke was tasteless and wrong.

The Today Show tweeted an apology immediately. "We aired a joke in our 9:00 hour that was offensive. We apologize to our viewers." Apology accepted. Yet I cannot get past the fact someone at the Today Show thought this was funny, put thought into it, found a person to perform fake sign language, created a round bubble to input into the program. This takes a good bit of work. Someone employed by the Today Show thought this was funny. I cannot get past this. A fraud stood next to world leaders and the Today Show thinks this is funny?  To me this is an indication that the public at large thinks disability rights are nothing more than a joke.

I suggest readers go to Feminist Philosphers and read Teresa Blankmeyer Burke post "Defer to the Deaf Person: Interpreters and Quality Control". Link: The implications of a fraud such as the one in South Africa has a profound impact on deaf people. Quality control is a major problem in Deaf Culture. While I have seen this first hand myself Teresa has told me one horror story after another in her struggle to effectively participate in the academic field as a deaf scholar.  She refers to a term I have never heard--"Bad Fit to the Assignment". I translate this into a failure to communicate and lack of interest in having deaf people participate. Another variable is cost. Qualified interpreters are not cheap, especially interpreters who work with deaf philosophers and academics such as Blankmeyer Burke. This problem however is not financial but cultural. To provide effective interpreters requires academia to become allies with deaf scholars, acknowledge their expertise, and rely on the fact they know best how to be accommodated. Based on my limited experience this reasonable approach suggested by Blankmeyer Burke is not going to be instituted for a very long time.

Wednesday, December 11, 2013

Timothy Bowers and Ingrained Disability Based Bias : Part Two

Thanks to a Facebook "friend" I came across a blog post that echoes what I just wrote.  I somehow missed this post as it appeared November 18.  I urge you to read "Thoughts on the Tom Bowers Tragedy" at the Squeeky Wheel. Link: 

Here are two excellent quotes: 

It is disturbing how quickly the newly disabled are presented with a bleak picture, made to feel like a burden, and never given a chance to consider that life in a wheelchair does not have to mean the end of a valuable life. The problem in society is that it carelessly allows people to believe that it is the end, no questions asked. The “no one would blame you if you want to die” attitude says “Yeah, I don’t see the value of your life either” and people with disabilities can extinguish their lives unchallenged. We believe what we are taught, and we are taught to expect empty lives when we become disabled. I do not feel angry at Bowers for his choice, but I do feel angry at the world he lived in for making him feel like that choice was only natural.

I hope that one day there will be no more stories like this, because we will know how much we are loved and valued no matter what our physical abilities may be. That we will not have to be afraid of how others will see us once we become disabled. That we will go forward knowing that we are entitled to a valuable existence. And no one will be hastily allowed to die because no one gave him or her a chance to learn how to live again. 

In recent weeks I have struggled mightily with a gut wrenching loneliness. Some of this was personal and I will no longer mention this aspect of my life. To do so could cloud larger points I am trying to make.  As of today my loneliness is directly related to my disability. I have reluctantly concluded that despite three decades of demonstrating my value as a human being I will never be perceived as such. Dehumanizing and degrading experiences and disability go hand in hand. I remain stunned by what took place at William and Hobart Smith. This experience and the hundreds if not thousands of others like it have proven to be like a cancer in my soul. It just eats away at me every day. If scholars do not understand the broader ramifications of disability, if scholars dismiss the lack of wheelchair access as a problem or mistake is it reasonable to expect  society at large values my existence? In a word no.  This emphasizes just how alone we people with a disability are. By alone in this context I mean our existence is of little value. Bowers paid the ultimate price for this cultural bias. 

Timothy Bowers and Deeply Ingrained Disability Based Bias

Last month I wrote about Timothy Bowers who died within 24 hours of sustaining a devastating cervical spinal cord injury. Mainstream newspapers dubbed him the deer hunter as he fell out of a tree stand.  Like many people with a disability I found the circumstances of Bower’s death deeply upsetting. Equally disturbing was the way the end of his life was framed by bioethicists--they hailed Bower's death as being a paragon of patient rights and autonomy. I expected Bower’s death would go viral. To an extent it did. There was an explosion of articles published a few days after Bower died but the stories went no further. Indeed, Bower quickly became newspaper filler. What all reports failed to dele into was the fact Bower’s death was highly unusual. It is not every day a person experiences a spinal cord injury and at the family’s request is removed from a medically induced coma. Upon consciousness Bowers was told of his condition and a grim portrait of his future was drawn—he would be a vent dependent quadriplegic, likely live in a nursing home, he would never hold his soon to be born child, and that the quality of his life would be quite poor. The message was not subtle: death was preferable to life. 

This week two stories have been written about Bower’s death. Richard Senelick published an article, "Reconciling Life and Quadriplegia" in the Atlantic. Link: Senelick is a neurologist and medical director of Rehabilitation Institution of San Antonio The second essay I found, "The Misguided Notion That Life with a Disability isn’t Worth Living" was written by Tiffany Carlson. Link:

There is no question that a cervical spinal cord injury is devastating. There is no question that life as a vent dependent quad is very difficult and expensive. These observations do not imply a very good life as an upper level vent dependent quad is not impossible. I have known a number of men and women who have lived such a life. They got married and divorced. They had jobs and many earned an advanced degree. I would consider these people ordinary; but they are ordinary only because adequate social supports exist. I certainly never questioned the quality of their life. This is exactly what Bowers family did. It is exactly what the physicians in charge of his care did. It is exactly what bioethicists did applauding Bowers supposed autonomy. This is ethically objectionable and grossly misleading. It is a threat to my existence and every paralyzed person. 

Let me inject salient facts that have been ignored. Do not trust me. I have a PhD not an MD.  Here is what Richard Senelick stated:

In this case, we have an acutely injured man who was under sedation in order to tolerate his ventilator. Paralyzed and intubated, a patient can usually only respond with head nods or eye blinks. Even if the sedation is discontinued, it would be difficult to have a detailed and meaningful conversation about what it means to be paralyzed and on a ventilator. If you are trying to make a decision on whether to live or die, you should have access to detailed and accurate information about your condition. It is not easy to make a “rational” decision in a highly emotional situation, but you must try.

What people fail to realize is how biased people are against disability—especially any disability that requires a vent. When I use the term people I am referring to the public at large and every health care worker. Put yourself in Bower's situation. You go out hunting and wake up with a vent in an ICU. I do not think it was humanly possible for Bowers to make a rational choice. I have been in many an ISU as a patient. It is a technological wonderland where day and night merge. Sensory deprivation is extreme. All patients are heavily medicated many of whom are at the end of their life. This was not the place or time for Bowers to make a decision to live or die. 

Carlson gets to what is not said in an ICU or other hospital settings. She wrote: 

No one should ever assume someone with a severe spinal cord injury would rather be dead than alive, but most people who are able-bodied assume this, even medical personnel. All should be leaving their bias at the door instead.

Carlson is hopelessly naive. Bias exists in every hospital in the nation. Mistakes happen and even highly educated people can be bigots. In my opinion hospitals are among the most hostile institutions when it comes to disability based bias. We people with a disability represent the limits of medical technology and the ability to cure a host of disabling conditions. We are thus symbolic failures. Worse yet, we require more labor. We also require advanced technology that is expensive. This is a recipe for death and disaster. And this is what happened to Bowers.  He needlessly died and was given the illusion of choice under impossible conditions. I know all about this as a hospitalist once suggested to me  death was preferable to a long and arduous recovery.  Carlson maintains: 

most people would rather die than live with a spinal cord injury, even doctors and nurses think these things in secret. They shouldn’t be blamed for thinking these things, but they shouldn’t let their opinion on the matter influence what they tell family and friends of the newly injured. You have no idea “what’s worth living” until you’re in the reality yourself.

Again, Carlson is naive. But she does have a point. Bias is unacceptable. Bowers death is a sad example that bias can be lethal. Senelick drives home this point at the end of his article. 

We are on a slippery slope when we quickly make the assumption that people with severe disabilities would not want to live and could not experience quality in their lives. It is very dangerous when society views the severely disabled as not worthy of the same treatment of the able bodied. Every day we pull out all the stops to treat an elderly person with a heart attack, but then assume that someone who is paralyzed, in a wheelchair and on a ventilator could not possibly live a “quality” life. That was the assumption made by the people in Indiana.
I am regularly accused of being bitter and angry. Bitter I am not. Angry yes. I not angry about my disability. If anything I am quite proud of my body. I am angry about social injustice. I am angry about disability based bias that hampers my ability to lead a good life.  I am angry that almost every time I travel or leave my home it requires advanced planning and all sorts of mental gymnastics on my part must be performed. Spontaneous actions are impossible in the land of disability. Our physical and social environment is designed for bipedal people. Problems abound as do mistakes. Oh how weary I am of this line of reasoning. To label barriers of inclusion as  problems and mistakes  is wrong and undermines all efforts of disability rights activists and scholars. The social and physical barriers I encounter are a civil rights violation. My existence is a problem and mistakes are made because my presence in not wanted.  I really do not want to hear it. I do not want to engage with others unless it is done on an equal plane of existence. Lives are at stake. Bowers death proved this. 

Sunday, December 8, 2013

Is it Possible to Have a Jackie Robinson Pee Wee Reese Moment

The history of baseball is filled with grand tales. One of the grandest is the Jackie Robinson  Pee Wee Reese embrace. In 42  that I wrote about yesterday the Jackie Robinson Pee Wee Reese moment is dramatized to great affect.  For those unfamiliar with baseball lore, Robinson had encountered shocking abuse from racists. As baseball lore has it, Philadelphia and Cincinnati were particularly racist cities. Robinson was subjected to particularly intense racist hatred. Robinson was supposedly at a low point. Pee Wee Reese was from nearby Kentucky and a southern white man. Many of his friends and even family members were angry he would play on the same team as a black man.  Hard to imagine today, but the divide between the two men at the time was perceived to be great--think Grand Canyon. The two men were not close friends but respected each other.

In 2013 there is nothing unusual about this photograph of two ball players. When Jackie Robinson broke into baseball this image was shocking. In the film 42 the build up to the so called Jackie Robinson Pee Wee Reese embrace was long, dramatic, and accompanied by soaring melodramatic music. In the film Pee Wee Reese walks from short stop and across the infield to Jackie Robinson at first base. He puts his arm on Robinson's shoulder and the two men have a short chat. This changed baseball history and the way race was perceived in the United States. The cultural logic was simple: baseball is America. If baseball can be integrated all of America can and should be integrated.

Exactly what happened in Cincinnati is unknown. What is depicted in the film 42 never took place. I am happy to let baseball historians argue about this. The details are not important. What is important is the moment in time.  Something important took place. Even Pee Wee Reese, Jackie Robinson and Rachel Robinson do not recall the details of what happened.  The important point is that it could have happened in any American city in 1947. Think about that. Let that settle in your brain and ruminate about that for a while. Think about Jim Crow laws, white only bathrooms, colored people sitting in the back of the bus. These thoughts make me shudder. I cannot imagine this world, a world my parents came of age in. In one biography of Robinson he recalled:

Pee Wee kind of sensed the sort of helpless, dead feeling in me and came over and stood beside me for a while. He didn't say a word, but he looked over at the chaps who were yelling at me and just stared. He was standing by me, I could tell you that.

When I saw 42 I was deeply touched by this moment. And this is the power of folklore and film making. Mix a real life event, an ordinary event even, with great ideas and in this case the civil rights of all black people and you create history. Based on my knowledge of baseball history, average at best, the people involved are not as important as the story that is repeatedly told. Ask any American child about Jackie Robinson and they can retell this story. At the end of his life Reese did not like the fact he had been made out to be a hero. I cannot blame him. If there was a hero involved it was Robinson. I shudder to think of the racist abuse he endured. But like Reese, Robinson was not a myth but a real life human being. Robinson's widow Rachel recalled her husband mentioned Pee Wee Reese's gesture that day and recalled "It came as such a relief to him, that a teammate and the captain of the team would go ut of his way in such a public fashion to express his friendship." 

As I lay in bed this morning waiting for the sun to rise I realized why this event has been stuck in my mind. I have never had people publicly support me or my civil rights. Of course individuals have shown me great support. As I thought about that scene in the 42 I realized I was experiencing multiple primal feelings. I was deeply jealous. Like Robinson, for a while I have felt "dead inside". An overwhelming sense of helplessness has over come me in recent weeks. I have come to the conclusion I as crippled man will never have a Jackie Robinson Pee Wee Reese moment.  I will never be equal. I will forever have to defend my civil rights and demonstrate my life is worth living.  Worse, this life long battle will be mine and  mine alone. The ADA is simply not widely understood to be civil rights legislation. Until this changes real equality will remain illusive. No wonder as the holidays approach my mood is grim.