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Saturday, December 7, 2013

42 The Jackie Robinson Story, Disability and Loneliness

I find a host of black American writers inspiring. I am particularly drawn to Richard Wright, author of Native Son and Black Boy. However, it is Ralph Ellison's searing book  Invisible Man that is hands down my favorite. I have read Invisible Man many times.  One quote stands out and in my well worn copy it is highlighted in yellow and underlined in pen and has large stars around it: 

I am invisible, understand, simply because people refuse to see me. Like the bodiless heads you see sometimes in circus sideshows, it is as though I have been surrounded by mirrors of hard, distorting glass. When they approach me they see only my surroundings, themselves or figments of their imagination, indeed, everything and anything except me.

People never see me. People see a wheelchair. From there they make all sorts of leaps in logic, none of them positive. Tragedy. Illness. Incompetence. Lack of ability. Cognitive impairment and physical impairment. Sadness. Bitterness. Anger. Asexual. Weak. Unemployed.  I need not open my mouth for people to leap to conclusions about my life. The fact none of the assumptions made about me are remotely correct means nothing. As Ellison wrote, the version of me that others create is distorted. When it comes to imagination and disability the results are always negative. I can never stack up to the almighty and powerful bipedal individuals that look down on me and judge my life as not worthy.  There are days I cannot take this. There are days I cannot leave my home. I cannot bring myself to educate the ignorant masses that routinely accost me. There are days when I cannot battle. I have had too many of these days recently. I am not happy and dread the so called holiday season. There will be no cheer in my house. I have no interest in seeing my family. I have no interest in spreading good cheer. I doubt I will unpack the holiday decorations. I see no point in making myself more miserable. I will forego a Christmas tree this year. I will do my level best to avoid people from now until after January 1. Every year it is the same. During the month of December everyone is eager to "help" me.  I am repeatedly told it is "good to see you out and about" as though I am a charity case. 

In an effort to cheer myself up I watched 42 The Jackie Robinson movie last night. Like the vast majority of sport movies, it was not very good. There were a multitude of factual errors. Despite the power of the Robinson's life story the movie was formulaic and overly sentimental. Far superior films exist such as Ken Burns Baseball. Like most Hollywood films, 42 is overly dramatic and covers well known ground such as Pee Wee Reese public embrace of Robinson. 42 does not let the facts get in the way of a a good story. Despite its flaws I liked the film. Robison is obviously the hero of the film--"superman" according to Branch Rickey. This characterization is double edged sword. Superman has feelings and the film demonstrates what a lonely struggle Robinson had. Yes, he had the support of  his wife, Branch Rickey and others, but the taunting and gross prejudice he experienced, the vitriol directed at him was nothing short of horrific. I have no doubt he felt very much alone and worse knew he could not reply in kind. This touched me because I have been dealing with a profound sense of loneliness. The sort of loneliness that eats away at your heart and causes a pain so indescribably difficult words fail me. I can relate to what Robinson experienced. Every where I went this semester a spectacle was sure to follow. A speaking podium that was taller than me. A speakers stage with no ramp. An entrance to a hotel through the luggage room. Side entrances to prestigious buildings that are filthy and in some cases dangerous. Inaccessible bathroom galore. Bars with tables that are well above my head. Wheelchair logos and signs that lead me nowhere. What is one too do? Like Robinson, I cannot fight back in kind. I cannot express my outrage in no uncertain terms. I am forced to be polite at all times. I am not an individual I am the exemplar for all disability. If I am bitter all people with a disability are bitter. If I get angry all people with a disability are angry.  It is a classic Catch 22 situation.

So what does a depressed and lonely bad cripple do? Well, thanks to my former lover and the recent purchase of a trainer I ride my handcycle. It is too cold to ride outside. I tried that this morning. Big mistake at 22 f.  It is just not safe to ride my handcycle at this time of year. I am very low to the ground and cars are not expecting to see me or any other bike rider for that matter. So where do I ride? My handcycle is smack dab in the middle of my living room. Here is the evidence.

One last quote from Ellison that illustrates the dilemma I am facing: "Perhaps to lose a sense of where you are implies the danger of losing a sense of who you are.”  That my friends is where I am at. I do not know where I am or who I am.  It would be an exaggeration to suggest my life is at a cross roads. I will endure, I am a survivor. I demonstrated that as a morbidly sick kid. I demonstrated that when I was bed bound and dependent upon my family in 2010.  I am lost and lonely as of today. Who knows what tomorrow will bring.  Hard times indeed but I am hopeful for a great 2014. 

Wednesday, December 4, 2013

Lovely Video and the Disabled Body

My body is unique. My left hip dislocated 40 years ago and as a result my left leg is about two inches shorter than my right. I have a severe scoliosis and thoracic spinal fusion. The skin on my back is distinguished by faded long rail road track surgical scars. My curved spine is not getting worse but it certainly is cork screwing my body to the right as I age. There is not a single symmetrical part of my body. I am all odd curves and mismatching body parts. When I swim or simply take off my shirt people stare at me. I do not mean a passing stare but flat out rude prolonged stare. I do not feel like a freak but many strangers think this. The irony to me is I am in very good physical shape. I am slender--a whopping 143 pounds. I am strong--strong in the sense I am built for endurance and long handcycle rides. Put me in a weight room and I will become instantly bored and capable of lifting little weight compared to other men. I am a man of motion. Movement is a constant.

I am pleased with my body. It has served me well. I hope to die with a battered body, one that was used to its fullest extent. I rail against physical loss as I age. Getting from floor to wheelchair was once a simple process when my son was a boy is now exceptionally difficult. I suspect my hearing is getting bad. I tire more easily as steep hills take me a while to get up.  All in all though I have fared well. This thought process is out of the norm. Many people with disabilities struggle with their body image. I get this. Our bodies are perceived as deformed or defective and are routinely medicalized. Here is where I really depart from the norm. I find disabled bodies attractive. Culture is inscribed on our bodies. I have seen many disabled bodies. I find scoliosis fascinating. I see a man or woman shirtless with a profound scoliosis from behind and think their body is gorgeous. A profound scoliosis is  akin to a tree that has grown in an unusual fashion due to environmental variables. I find amputees and the residual limb equally interesting. All disabled bodies have an element of beauty to me. This point was reinforced today when I saw the below video.

I love this video.  According to the Huffington Post the video was created by Pro Infirmis. What resonated with me was how much the people with a disability enjoyed the process of having their body duplicated in mannequin form. Even better was the fact the mannequins were put in store windows in Zurich to celebrate International Day of Persons with Disabilities. I do not care one iota about the reactions to the mannequins by the general public that walked by. I experience those sort of reactions daily. I care about the people with a disability that got to celebrate and enjoy their body. This is all too rare. Remarkably, I even like the title of the video: "Because Who is Perfect? Get Closer". No human is perfect. No body is without flaws. Like the other people in this video my body is simply different. In that difference I see great beauty. I wish others thought the same way.

Monday, December 2, 2013

Ritual Humiliation in the Hospital

Hospitals are total institutions. They operate much like a prison, nursing home, military base, or university. Every aspect of life is controlled. Erving Goffman did sociological field work in mental institutions. He was not impressed. No institutions are impressive. Institutions violate our deeply ingrained and highly valued sense of autonomy. When one's life is controlled by a total institution options may or may not exist. At issue is the measure of control. Do not buy into the jargon spewed by those that work at institutions--the core issue is always control. At a military base or prison the control is extreme and obvious. All wake up at the same time. All eat at the same time. All go to the bed at the same time. A hospital is not much different. Once admitted to a hospital, a patient has no control over their life and liberty. Choices exists but they are limited. One is given an ID bracelet--an identity marker at multiple levels symbolically and practically. Time slows down. Control of your time, when and where you will be seen is not possible. You are at the mercy of the vagaries of the system. Violate that system and you are branded a "difficult" or "noncompliant" patient. If you earn this designation you are going to get inferior care. Compliance is expected. You have a role in the institution. Your job is to get better and do as you are told. Do not violate this dictate. To do so not only earns you inferior care but puts your life at risk. Do not fool with the powers that be. You can easily be shipped out to a far less pleasant place. You can find yourself heavy medicated and in a drug induced stupor. Institutions calls this chemical sedation or chemical restraint. Yes, we no longer tie people to the bed or their wheelchair nor do we perform lobotomies on the mentally ill. We drug people into silent oblivion. Control and the never to be changed highly valued schedules rule.

These thoughts have been coursing through my mind because of a photograph a reader sent me. I was stunned. In a hospital symbols abound.  Obvious social markers at a teaching include the archetypical long white coat. Some symbolic markers are objectionable. For instance, I was at a hospital facility in Syracuse and noted physician ID tags had the large word "DOCTOR" in bold black ink added to their ID tag. One might as well put the word GOD on the ID. Negative symbolic markers  exist. Here is a perfect example

This tag was placed on a Bad Cripple reader at an emergency room. The man had a spinal cord injury. This tag has a single use--to further spoil the identity of the man in question.  Erving Goffman wrote about spoiled identity in his classic 1963 text Stigma. Goffman noted that there were three types of stigma: physical identity, group identity, character identity.  We people with a disability are saddled with all three forms of a spoiled identity.  What the "fall risk" bracelet does is separate this man from the possibility of normalcy. Goffman would have labeled the bracelet a dis-identifier. In the institutional setting of a hospital this man is physically and socially problematic. He is a physical risk to himself and as such requires more work--often hard physical labor. He might need to picked up if he fell. He might be injured if he fell. The worst part of this sort of dehumanization is that the man cannot complain. Normal people, the health care staff, are the power brokers. The patient is powerless. He or she must defer to the power and hopefully kindness of expert others. Other here refers to any "normal" person, staff or visitor. Staff expects this man to be compliant and not complain.  Can you imagine what would happen if this man objected and tried to explain the symbolism involved?

When a person with a disability enters a hospital he or she encounters a hostile environment, one that is likely grossly inaccessible. Ironic, eh. The infuriating thing is any effort to change the social structure of the institution is domed to fail. The second you cross the threshold and enter an institution you have relinquished control to others. When in a pissy mood I upset the expected balance in institutions. I have been given detailed informed consent forms seconds before a procedure and with a straight face I tell the uninformed health care worker that I will need at least 30 minutes to review the form. When I have been admitted to a hospital and when weary of the endless irrelevant questions that drone on I will insert inappropriate replies. For instance, when one gets to "hearing normal" I repeatedly say what. It usually takes at least six "whats" before the health care employee catches on. I am guilty of being subversive. Frankly, I thrive in an institutional setting. I am a master manipulator. I think most people that have gone through the medical mill learn how to be subversive. It is the only way to assert your humanity and lessen the control an institution has over your life. The fact is the more you are liked the better your care will be. I saw this as a sick child. I saw this as a sick adult.  This is a social skill that every person with a disability must hone as if their life depends upon it for I learned in 2010 one's life does indeed depend upon being perceived by health care workers as possessing a life worth living.