I am in Cortland, New York and staying at a Ramada Inn. This motel has the strangest mix of appropriate wheelchair access smashed against a gross lack of wheelchair access. I pulled in this afternoon and one entire side of the building is devoted to handicapped parking. There must be twenty plus wide spots available. This is a good sign. When I enter the building I see a nonconforming ramp--an obviously non conforming ramp as in not anywhere near code--that leads to the registration desk. I am not a happy camper but I am relieved to learn my room does not require me to use this ramp. No big deal I tell myself, the room will be good; and the room is in fact nice. The bathroom has a good layout, grab bars in logical places. The towel rack is above the toilet near and the ceiling. No way I can reach a towel. I go to open the window and discover the room faces a game room/pool area. I can smell the chlorine through the window--a window that does not open. Given the fumes I am glad the window is bolted shut. Okay, I think I can adjust the thermostat and put the fan on. No such luck. The thermostat is placed high on a wall I cannot possibly get to.
Well, if I am going to smell chlorine all night let me at least go for a swim. The person at the registration desk assures me there is a lift--a lift that works no less. I go to the pool area. I can see the lift. I just cannot get to it. There are two steps up to pool area. I go to the registration desk and an extended discussion takes place "Can't you walk up the steps?" Um no. No I cannot walk. More discussion takes place. If I exit the building and go to the furthest emergency exit at the rear of the building I can get to the pool area through the storage and maintenance rooms. But to do so a path would have to made. This is going to take some time I am told. I point out it is raining hard and that as I drove in I saw a pile of snow next to the emergency exit mentioned. The enthusiasm that was lukewarm to begin with has now been doused. No swimming for me. I return to my room and when I open my door I can hear kids yelling and screaming as they swim. Great. I will drown my sorrows with a beer. They have a bar--an inaccessible bar. Can I get just a beer for my room I ask. No they cannot let me leave the bar area with an open container. I point out I am not technically in the bar area. This does not sway the bar tender. Golly, is it any wonder I do not exactly feel equal to the bipedal people hordes that surround me. Really, 23 years post ADA and this is what passes for reasonable accommodations? What a joke but sadly I am not laughing.
Saturday, January 11, 2014
Friday, January 10, 2014
Why I am Grim
Every morning I read various news feeds and come across one horror story after another related to disability. An assisted suicide. An assault by police. A special needs child left on a bus for hours on end in the cold. A disabled baby abandoned by his parents. An elderly person killed because their life had no value. The litany of misery associated with disability is long and grim. And by misery I am not referring to physical pain or limitations--the misery I think of is a product of a society that does not care about people like me. For reasons I cannot clearly articulate a post on Facebook by Bailey Weber Wright resonated with me. She wrote:
I am very disappointed by my in last trip with United Airlines. My husband is in a wheelchair and we were treated as second class. First you took apart his custom wheelchair and did not put it together correctly. That was our first flight. On our second flight you "forgot" to preboard us, even though we checked in 2 hours early and were waiting for you. Instead you decided to use the isle chair and lift my husband in front of a full air plane. This is the most humiliating thing to someone who can not help the fact that they are medically unable to walk. After you kept saying that he should just walk or stand, if he could he would. Your insensitivity and humiliation of my husband was unacceptable. Then after a long flight we landed at our destination the crew came out to lift my husband out of the seat and into the isle chair then treated him in an inexcusable manner. My husband said he was uncomfortable and it was hurting when he was lifted as they scraped his side along the seat. The man lifting him told him that he was ok and that he couldn't feel it anyway. How dare you tell my husband what he can and cant fell. Just because a man is in a wheelchair and can not walk doesn't mean that he has no feeling. He was not fine. You bruised him and cut a huge gash in his side. He was bleeding while you told him to be quiet and that he was fine. This is inexcusable. And to make it worse I have left messages with your comment line and emailed in and I have received nothing. Not even an apology for treating my husband and I so horribly. Is it your normal practice to harm and humiliate a handicapped man and then never address concerns about your airline? We have never been treated so horribly by an airline before.
This is a photo of my husband's side the next day. After it had begun to scab. This does not look like something that he seamed to be making up, as your crew insinuated.
Maybe now I will get a response when more than just your employees can see my complaint.
Here is the photo:
The answer to the question posed above, "is it your normal practice to harm and humiliate a handicap man", addresses two issues: First, I am sure every commercial airline airline does not want to injure a passenger, disabled or able bodied. An injured passenger is bad business and the industry already has enough problems. Second, there is no doubt in my mind people with a disability are routinely humiliated when they fly. I would contend it is the norm. Simply put, the aviation industry is hostile to disability. This has been a constant for the last four decades. I will acknowledge in the post 9/11 era flying is miserable for all. However, the abuse people with a disability experience is taken to an entirely different level. A number of problems exist. Boarding is a needlessly long process. People with a disability such as myself that use a wheelchair are first on and the very last person last off a plane. The job of assisting people with a disability on has been subcontracted by the airlines to the lowest bidder. The people employed to assist me on and off the plane have no idea what they are doing. The lack of knowledge is often complicated by poor english speaking skills (especially at NYC area airports). Lest my words are perceived to be a critique of the people employed by the airlines to assist me they are not the problem. The real problem is the airlines do not value passengers with disabilities. Because our existence is not valued the airline knowingly allows subcontractors to hire poorly paid employees that are overworked and not adequately trained. Fault does not rest with the those that assist me but rather with a deeply ingrained bias against anything and everything related to disability.
Another significant problem that prevents people with a disability from flying or causes at minimum great angst is damage to expensive equipment such as wheelchairs. Most people I know that use power wheelchairs either do not travel at all or use a manual wheelchair when they fly. This severely restricts their ability to function and can cause potential health related problems. Not many people, for good reason, are willing to risk damage to frightfully expensive and hard to repair power wheelchairs. Even annual wheelchair are terribly abused. I have had my wheelchair severely damaged many times. The problems I encounter and typified by the story above are symbolic of stigma associated with disability. Yes, I can get on a plane. Yes, I can fly to any city in the nation. What I cannot do is travel without significant worry. My worries are not garden variety travel concerns but rather worries that could impact my life for months on end. Wheelchairs are not easily fixed. Wounds such as the one above take weeks or months to heal. At no point in my life am I more aware of my disability than when I fly or try to access mass transportation. This is never easy, problems abound physically and socially. Of one thing I am--I will not stop traveling no matter how poorly I am treated. I have rights and I am not about to giver them up. I merely wish the bipedal hordes that surround my might offer a wee bit of support.
I am very disappointed by my in last trip with United Airlines. My husband is in a wheelchair and we were treated as second class. First you took apart his custom wheelchair and did not put it together correctly. That was our first flight. On our second flight you "forgot" to preboard us, even though we checked in 2 hours early and were waiting for you. Instead you decided to use the isle chair and lift my husband in front of a full air plane. This is the most humiliating thing to someone who can not help the fact that they are medically unable to walk. After you kept saying that he should just walk or stand, if he could he would. Your insensitivity and humiliation of my husband was unacceptable. Then after a long flight we landed at our destination the crew came out to lift my husband out of the seat and into the isle chair then treated him in an inexcusable manner. My husband said he was uncomfortable and it was hurting when he was lifted as they scraped his side along the seat. The man lifting him told him that he was ok and that he couldn't feel it anyway. How dare you tell my husband what he can and cant fell. Just because a man is in a wheelchair and can not walk doesn't mean that he has no feeling. He was not fine. You bruised him and cut a huge gash in his side. He was bleeding while you told him to be quiet and that he was fine. This is inexcusable. And to make it worse I have left messages with your comment line and emailed in and I have received nothing. Not even an apology for treating my husband and I so horribly. Is it your normal practice to harm and humiliate a handicapped man and then never address concerns about your airline? We have never been treated so horribly by an airline before.
This is a photo of my husband's side the next day. After it had begun to scab. This does not look like something that he seamed to be making up, as your crew insinuated.
Maybe now I will get a response when more than just your employees can see my complaint.
Here is the photo:
Another significant problem that prevents people with a disability from flying or causes at minimum great angst is damage to expensive equipment such as wheelchairs. Most people I know that use power wheelchairs either do not travel at all or use a manual wheelchair when they fly. This severely restricts their ability to function and can cause potential health related problems. Not many people, for good reason, are willing to risk damage to frightfully expensive and hard to repair power wheelchairs. Even annual wheelchair are terribly abused. I have had my wheelchair severely damaged many times. The problems I encounter and typified by the story above are symbolic of stigma associated with disability. Yes, I can get on a plane. Yes, I can fly to any city in the nation. What I cannot do is travel without significant worry. My worries are not garden variety travel concerns but rather worries that could impact my life for months on end. Wheelchairs are not easily fixed. Wounds such as the one above take weeks or months to heal. At no point in my life am I more aware of my disability than when I fly or try to access mass transportation. This is never easy, problems abound physically and socially. Of one thing I am--I will not stop traveling no matter how poorly I am treated. I have rights and I am not about to giver them up. I merely wish the bipedal hordes that surround my might offer a wee bit of support.
Thursday, January 9, 2014
A Verbal Assault and the Diminishment Elevator
Much of the country has been gripped by record breaking low temperatures. I love it. I truly love the cold. Give me a bone chilling arctic front and I am good to go. I love the cold. The only way to improve frigid temperatures is to add a heavy snow fall. Obviously the last week or so has been great. I go outside with my beloved lab Kate at night and before the sun comes up. I love the rock hard terrain and crunch of my wheels as I go over frozen grass. Others I know are not happy about the cold. I saw an elderly woman at the local supermarket yesterday and she was clearly struggling. Her arthritic fingers could not quite grasp coins and she was very slow to check out. The check out ladies working the registers looked miserable. Many had on sweaters and one woman even had a long winter coat on. Truth be told, the front of the store was in fact quite chilly.
I was having a typical day. I took a quick trip to the supermarket like I have down many times before. It was not frigid but very cold--temperatures were in the teens. Since I was going to be outdoors for a very short period of time I left my jacket in the back seat of my car. I was wearing a long sleeve shirt and my favorite heavy bright orange Syracuse sweat jacket. After shopping I went toward my car and saw an older man veer toward me. I knew I was in trouble. I have a sixth sense for this sort of thing. I was about to be accosted. Welcome to my world and screwed up social interactions.
Man: "Hey! Hey you! You! Hey! Hey! Hey!" Now just short of yelling--"You in the wheelchair."
Me: I put my head down and try to become invisible. I am careful to keep my back to the man who is loudly trying to get my attention.
Man: Speaking to mostly my back the man loudly states "hey, you should not be out in this cold weather. Why are you out? How can you be out by yourself? It is dangerously cold."
Me: I quietly ask the man "Please leave me alone".
Man: The man shakes his head as though he is dealing with a difficult child. "People like you, you know in your condition, should not go out in this cold wether. You are in danger. Where is you caretaker? I want to talk to him. He is being irresponsible. Where is he? You could get frost bite".
Me. I glare at the man. But really what can I do? What if I lose my temper? What if I try to engage this man? This man's perception of disability is decades old. I am a charity case. I should be pushed around by a caretaker in white pants and starched white shirt. I should have a lap blanket over my legs. Based on 35+ years of experience I know to engage this man is a risky proposition because the most likely response if I assert myself is fury. I also run the risk of being angrily deemed bitter about my plight (obviously my life sucks). Does this man notice I am glaring at him? No. Does he notice my body has become stiff as a board? No. Does he know the archetype he has created in his head is wrong? No. Does he know that I have endured thousands of verbal assaults? No. Does he know there are days I cannot leave my home because I dread people like him? No. This man is "helping" me. He will feel better about himself and the world because he helped the less fortunate, namely me. Utterly lost is the fact he is asserting his social dominance and demeaning me. He does not get this any level. He is the kindly saint. I am the less fortunate being as such I should not bite the hand that feeds me.
What I described above happens on a fairly regular basis. More often than not such incidents do not bother me. In fact I would have forgotten what took place had I not read yet another excellent short and the point point post by Dave Hingsburger at Rolling Around in My Head. See: http://davehingsburger.blogspot.com/2014/01/elevator-buttons.html?spref=fb In Hingsburger's most recent post, "Elevator Buttons" he wrote:
Over the course of a week I spend a lot of energy abjectly refusing to get on the 'diminishment elevator' and no matter how hard I have to work to keep the door open and block the 'down' button from being pushed, I manage as best I can to stay on equal footing. But it's work and it takes... gumption and courage.
The philosopher Eva Kittay in Love's Labor: Essays on Women, Equality and Dependency calls the "diminishment elevator" emotional labor. I think at a visceral level people with a disability get the social denigration involved. The second you begin using a wheelchair or have an obvious disability your social stature changes instantly. One assumes an unwanted and stigmatized identity subject to the "good will" of others. What I find frustrating in the extreme is that the man that accosted me was clueless. He was an ignorant bigot. He remains an ignorant bigot today. He will likely go to his grave an ignorant bigot. And this is a significant problem. This man is just one of millions of people that assume any human being that happens to have an obvious disability, in my case use a wheelchair, is incompetent. I am inferior, in need of help, to be watched over by my caretaker. It did not dawn on this man that I could lead a typical. No sir, my "problem" was paralysis. There is no social element to disability. I am an individual, an unlucky soul, "confined to a wheelchair".
More often than not, I laugh off such incidents. I tell myself the man is part of an older generation that grew up and absorbed a charity model of disability. The man in question likely never met a person with a disability. Segregation of people with a disability in the American public school system was not effectively broken until the mid 1970s. I tell myself to cut this man some slack. He meant well. Each time I try to follow this line of reasoning I stop myself. This is dangerous--and an untold number of lives have been lost. Stop. Just stop. The path to hell can be guided by good intentions. Stop. I must stop. I must remember. I must think. Eugenics. Sterilization. Institutionalization. "Three generations of imbecile is enough", Oliver Wendell Holmes in Buck v. Bell. Willowbrook. Segregation. Resource rooms. Stigma. Social Isolation. The denial of basic civil rights. The ADA.
Based on this brief and unpleasant exchange I cannot help but conclude that there is no public and mutually agreed upon social consensus about the rights of people with a disability. The law is on the side of people with a disability and has been for the last two decades. The law did not help me one iota yesterday. The law, namely the ADA, has largely failed to end the segregation of people with a disability. Children with "special needs"are shunted off to short buses. Adults with significant cognitive disabilities are placed into "adult programming" such as sheltered workshops and obscure day activity centers. The physical environment remains grossly inaccessible and designed with bipedal people in mind. The justifications used to segregate people with a disability are too often left unquestioned. Our basic human rights are violated on a regular basis and disability is a problem that must be managed. The perverse part of all this is that the people doing the managing know nothing about disability. I do not see this changing any time soon. In theory most would agree people with a disability should be treated equally. The key words here are "in theory". The reality I live is quite different. I am remind of this fact on a daily basis for everywhere I go problems abound; needless problems that are indicative of persistent and ongoing disability based bias. If you don't believe me go ask my mysterious caretaker who cannot be found. If you find my lap blanket along the way please return it.
I was having a typical day. I took a quick trip to the supermarket like I have down many times before. It was not frigid but very cold--temperatures were in the teens. Since I was going to be outdoors for a very short period of time I left my jacket in the back seat of my car. I was wearing a long sleeve shirt and my favorite heavy bright orange Syracuse sweat jacket. After shopping I went toward my car and saw an older man veer toward me. I knew I was in trouble. I have a sixth sense for this sort of thing. I was about to be accosted. Welcome to my world and screwed up social interactions.
Man: "Hey! Hey you! You! Hey! Hey! Hey!" Now just short of yelling--"You in the wheelchair."
Me: I put my head down and try to become invisible. I am careful to keep my back to the man who is loudly trying to get my attention.
Man: Speaking to mostly my back the man loudly states "hey, you should not be out in this cold weather. Why are you out? How can you be out by yourself? It is dangerously cold."
Me: I quietly ask the man "Please leave me alone".
Man: The man shakes his head as though he is dealing with a difficult child. "People like you, you know in your condition, should not go out in this cold wether. You are in danger. Where is you caretaker? I want to talk to him. He is being irresponsible. Where is he? You could get frost bite".
Me. I glare at the man. But really what can I do? What if I lose my temper? What if I try to engage this man? This man's perception of disability is decades old. I am a charity case. I should be pushed around by a caretaker in white pants and starched white shirt. I should have a lap blanket over my legs. Based on 35+ years of experience I know to engage this man is a risky proposition because the most likely response if I assert myself is fury. I also run the risk of being angrily deemed bitter about my plight (obviously my life sucks). Does this man notice I am glaring at him? No. Does he notice my body has become stiff as a board? No. Does he know the archetype he has created in his head is wrong? No. Does he know that I have endured thousands of verbal assaults? No. Does he know there are days I cannot leave my home because I dread people like him? No. This man is "helping" me. He will feel better about himself and the world because he helped the less fortunate, namely me. Utterly lost is the fact he is asserting his social dominance and demeaning me. He does not get this any level. He is the kindly saint. I am the less fortunate being as such I should not bite the hand that feeds me.
What I described above happens on a fairly regular basis. More often than not such incidents do not bother me. In fact I would have forgotten what took place had I not read yet another excellent short and the point point post by Dave Hingsburger at Rolling Around in My Head. See: http://davehingsburger.blogspot.com/2014/01/elevator-buttons.html?spref=fb In Hingsburger's most recent post, "Elevator Buttons" he wrote:
Over the course of a week I spend a lot of energy abjectly refusing to get on the 'diminishment elevator' and no matter how hard I have to work to keep the door open and block the 'down' button from being pushed, I manage as best I can to stay on equal footing. But it's work and it takes... gumption and courage.
The philosopher Eva Kittay in Love's Labor: Essays on Women, Equality and Dependency calls the "diminishment elevator" emotional labor. I think at a visceral level people with a disability get the social denigration involved. The second you begin using a wheelchair or have an obvious disability your social stature changes instantly. One assumes an unwanted and stigmatized identity subject to the "good will" of others. What I find frustrating in the extreme is that the man that accosted me was clueless. He was an ignorant bigot. He remains an ignorant bigot today. He will likely go to his grave an ignorant bigot. And this is a significant problem. This man is just one of millions of people that assume any human being that happens to have an obvious disability, in my case use a wheelchair, is incompetent. I am inferior, in need of help, to be watched over by my caretaker. It did not dawn on this man that I could lead a typical. No sir, my "problem" was paralysis. There is no social element to disability. I am an individual, an unlucky soul, "confined to a wheelchair".
More often than not, I laugh off such incidents. I tell myself the man is part of an older generation that grew up and absorbed a charity model of disability. The man in question likely never met a person with a disability. Segregation of people with a disability in the American public school system was not effectively broken until the mid 1970s. I tell myself to cut this man some slack. He meant well. Each time I try to follow this line of reasoning I stop myself. This is dangerous--and an untold number of lives have been lost. Stop. Just stop. The path to hell can be guided by good intentions. Stop. I must stop. I must remember. I must think. Eugenics. Sterilization. Institutionalization. "Three generations of imbecile is enough", Oliver Wendell Holmes in Buck v. Bell. Willowbrook. Segregation. Resource rooms. Stigma. Social Isolation. The denial of basic civil rights. The ADA.
Based on this brief and unpleasant exchange I cannot help but conclude that there is no public and mutually agreed upon social consensus about the rights of people with a disability. The law is on the side of people with a disability and has been for the last two decades. The law did not help me one iota yesterday. The law, namely the ADA, has largely failed to end the segregation of people with a disability. Children with "special needs"are shunted off to short buses. Adults with significant cognitive disabilities are placed into "adult programming" such as sheltered workshops and obscure day activity centers. The physical environment remains grossly inaccessible and designed with bipedal people in mind. The justifications used to segregate people with a disability are too often left unquestioned. Our basic human rights are violated on a regular basis and disability is a problem that must be managed. The perverse part of all this is that the people doing the managing know nothing about disability. I do not see this changing any time soon. In theory most would agree people with a disability should be treated equally. The key words here are "in theory". The reality I live is quite different. I am remind of this fact on a daily basis for everywhere I go problems abound; needless problems that are indicative of persistent and ongoing disability based bias. If you don't believe me go ask my mysterious caretaker who cannot be found. If you find my lap blanket along the way please return it.
Monday, January 6, 2014
On Normal: The Concept is Inherently Destructive
I came across a wonderful blog this morning that has sparked my imagination and infused me with the hope there are others like me that understand our health care system badly fails all those with atypical bodies. The blog is written by Heather Kirn Lanier author of Teaching in the Terrordome and The Story You Will Tell Yourself. Lanier's blog is a must read from my perspective. Link: http://starinhereye.wordpress.com/2014/01/05/breaking-up-with-doctor-normal/ Her post "Breaking up with Doctor Normal" resonated with me because every time I meet a physician my first thought is not about my health care but will the person acknowledge my humanity. Will said physician look at me as though I have a failed body. Like Lanier, I have heard variations of the following: "well in a normal situation..." Physicians are oblivious, not all of course, but many if not most. Physicians have stated some remarkably stupid things to me. Here is a random sampling.
"Do you get out much?"
"I wish my other patients had your drive. It would make my job easier".
Upon learning I have a PhD: "I did not know that was possible for a person in your condition".
"You are an amazing man to be so active. I could not do it".
When I had shoulder pain: "So your arms function as your legs. Pain is part of disability. You know that".
"What's it like to be paralyzed. It must be deeply depressing".
The comment "in a normal situation" is ever present when accessing health care. I have heard this line and variations of it dozens if not hundreds of times. I consider this phrase inherently destructive. I am set up to fail every time the word normal enters the equation. Lanier's daughter Fiona will fail as well. Lanier as a mother will fail. Lanier's eloquently observed when meeting with Doctor Normal:
We people with atypical bodies have no place in the world. We are a class apart. What drives me mad is how do you undermine this? If we confront Doctor Normal does he have the social skills and time to get a nuanced point? Here I share Kuusisto's pessimism. Clinicians with a waiting room of people do not have the time or inclination to enter into such a discussion. Perhaps I am being too negative but I think not. I think a perverse form of pragmatism is being performed that illustrates the flaws associated with capitalism. The physician is providing a service. I am a customer accessing his or her services. We each have an agenda and goal. As I read Lanier over my tea, I imagined the following scenario. I am in a small cramped exam room. Enter Doctor Normal. A cursory physical exam is performed, tests resulted looked at, and I hear the familiar phrase "in a normal situation".
Me: Doc your comment on normal makes me think of Marx and Engels. Class is a prominent feature of capitalist society. In German Ideology Marx and Engels observed class is itself a product of the bourgeoise. In contrasting my body to normal I am set up to fail as a lower class of people. You are denying my very humanity. Surely you get the point?
Doc: Silence and a curious look of utter confusion.
Me: Come on Doc. Think about it. I am part of the exploited proletariate. Marx wrote "In so far as millions of families live under economic conditions of existence that separate their mode of life, their interests, and their culture from those of the other classes, and put then in hostile opposition to the latter they form a class." Get it? I am a class apart from normal. You represent the bourgeoise. I represent the proletariate. I am exploited by the capitalistic system while you reap the rewards of a privileged economic and social position. We are a class apart.
Doc: Well that is an interesting observation. Now as I was saying "in a normal situation"...
Me: Bang head against table in frustration.
Doc: Doctor normal is upset and states "Oh no self injurious behavior. We need a psychiatric consult ASAP."
Silliness aside put yourself in my situation or better yet Lanier's situation. Doctor Normal has no appreciation for the logistics involved. Lanier noted her daughter sees nine different doctors, five therapists, and a nutritionist. In addition to being a mother Lanier is a complex care giver responsible for merging the ideas and suggestions of a large group of medical professionals most of who do not speak to one another. By itself this is a full time job. What she does not need, what all people with an atypical body do not need, is to be compared to normal. Fuck normal. Think Young Frankenstein instead--Abby Normal.
"Do you get out much?"
"I wish my other patients had your drive. It would make my job easier".
Upon learning I have a PhD: "I did not know that was possible for a person in your condition".
"You are an amazing man to be so active. I could not do it".
When I had shoulder pain: "So your arms function as your legs. Pain is part of disability. You know that".
"What's it like to be paralyzed. It must be deeply depressing".
The comment "in a normal situation" is ever present when accessing health care. I have heard this line and variations of it dozens if not hundreds of times. I consider this phrase inherently destructive. I am set up to fail every time the word normal enters the equation. Lanier's daughter Fiona will fail as well. Lanier as a mother will fail. Lanier's eloquently observed when meeting with Doctor Normal:
after some talk about what Fiona cannot do (always, always their emphasis on her cannots), Doc Normal said, “I mean, she is way, way behind.” That is when I realized that the doc’s use of “normal” wasn’t just a difference in our vocabulary usage. It reflected a different way of seeing. Way, way behind, he said. I saw a race. Numbers on the backs and fronts of runners, all children. The able-bodied kids charging ahead, the whites of their brains all fatty and luxurious with myelin, sending and receiving impulses with standard issue speed. I saw them racing toward a finish line. I saw a ribbon fall when their chests touched it, and I saw arms raised in victory.
In the metaphor, my daughter is way, way behind. In the metaphor, my daughter is a turtle creeping along the asphalt, and no, there is no fabled “Tortoise and Hare” ending.The metaphor makes a competition of human development, one in which my daughter is ultimately dismissed because, let’s face it, in this competition, she will never “catch up.” At a certain point, a marathon’s course shuts down. The tax dollars no longer keep it open. Traffic resumes. Night descends. The sky becomes black. The spectators and their applause go home.There is no winning when this kind of language is applied to my daughter or anyone like her. The language highlights a way of thinking about the human body that measures the body by its output.
A person with an atypical body cannot measure up to "normal". I can never be normal. Fiona will never be normal. The concept of normality within the health care system is a pervasive problem that has an adverse impact on all those with an atypical body. One could take a pessimistic approach as my good friend Stephen Kuusisto has done. Link: http://www.planet-of-the-blind.com/2014/01/the-face-of-doctor-normal.html Kuusisto is correct in that Lanier encountered one of many, a mob in fact, of poorly educated narrow minded physicians that lack a modicum of knowledge beyond the hard sciences. Socially inept is a phrase that comes to mind. But it runs much deeper than than a lack of knowledge, social skills, an awareness of disability and how people can and do adapt. Disability, life long disability, is very bad. Disability is a fate worse then death. We are failures at multiple levels: we are an economic drain, we represent extra labor, we require expensive medical technology, we are the symbolic representation of the myriad of ways the human body can go wrong, and last but not least, we are a failure symbolically. Modern medical science is limited in what it can do and we are a reminder of that fact. Our identity as a result is spoiled as Erving Goffman noted almost 40 years ago.We people with atypical bodies have no place in the world. We are a class apart. What drives me mad is how do you undermine this? If we confront Doctor Normal does he have the social skills and time to get a nuanced point? Here I share Kuusisto's pessimism. Clinicians with a waiting room of people do not have the time or inclination to enter into such a discussion. Perhaps I am being too negative but I think not. I think a perverse form of pragmatism is being performed that illustrates the flaws associated with capitalism. The physician is providing a service. I am a customer accessing his or her services. We each have an agenda and goal. As I read Lanier over my tea, I imagined the following scenario. I am in a small cramped exam room. Enter Doctor Normal. A cursory physical exam is performed, tests resulted looked at, and I hear the familiar phrase "in a normal situation".
Me: Doc your comment on normal makes me think of Marx and Engels. Class is a prominent feature of capitalist society. In German Ideology Marx and Engels observed class is itself a product of the bourgeoise. In contrasting my body to normal I am set up to fail as a lower class of people. You are denying my very humanity. Surely you get the point?
Doc: Silence and a curious look of utter confusion.
Me: Come on Doc. Think about it. I am part of the exploited proletariate. Marx wrote "In so far as millions of families live under economic conditions of existence that separate their mode of life, their interests, and their culture from those of the other classes, and put then in hostile opposition to the latter they form a class." Get it? I am a class apart from normal. You represent the bourgeoise. I represent the proletariate. I am exploited by the capitalistic system while you reap the rewards of a privileged economic and social position. We are a class apart.
Doc: Well that is an interesting observation. Now as I was saying "in a normal situation"...
Me: Bang head against table in frustration.
Doc: Doctor normal is upset and states "Oh no self injurious behavior. We need a psychiatric consult ASAP."
Silliness aside put yourself in my situation or better yet Lanier's situation. Doctor Normal has no appreciation for the logistics involved. Lanier noted her daughter sees nine different doctors, five therapists, and a nutritionist. In addition to being a mother Lanier is a complex care giver responsible for merging the ideas and suggestions of a large group of medical professionals most of who do not speak to one another. By itself this is a full time job. What she does not need, what all people with an atypical body do not need, is to be compared to normal. Fuck normal. Think Young Frankenstein instead--Abby Normal.
Saturday, January 4, 2014
Frigid Travel: Staying Warm and Safe
Quite some time ago I made plans to meet with Jennifer Johannesen this weekend in Niagara Falls. Two things could be accomplished: first, I went to Niagara Falls for the first time with my son last summer and thought I visited at the wrong time of year. The Falls and Victoria Park would be spectacular in the winter. I knew I wanted to return. Second, I could see Jennifer whose writing you can read at: http://johannesen.ca Other variables came into play. I knew if we did not meet the next opportunity might not be until next May. I also firmly believe in a video project she is undertaking and because of this considered this weekend a command performance. Screw the snow storm and dire forecast. I was going to Niagara Falls.
How does a paralyzed man prepare for such a trip? Actually the question should be how does a paralyzed guy safely and carefully prepare for such a trip. Basic logic. Watch the forecast carefully and improvise at a moments notice. I planned to leave well before sunrise on Friday for the six hour drive. No chance that will work. I decide to leave on Thursday morning before the storm hits and drive as far north and mostly west as I can before dark or snow hits. I head directly into the storm. I pack smartly. Three pairs of gloves with glove liners. A spectacularly warm jacket I got from Canadian tire. A hunting jacket replete with pockets for bullets. A back up down bubble jacket. Two strips of rubber in case I get stuck in snow. Two blankets for Kate and emergency blanket. A good shovel and car brush. Warm clothes--multiple sets of warm cloths. Nothing is taken for chance. Remember I was a Boy Scout leader! I am prepared.
I plan to go as far as Buffalo but know I will stop well before if the roads get bad. Buffalo is ambitious and before I hit Syracuse I know I will never make it. I aim for Syracuse. The drive is uneventful until the last 30 minutes. The forecasters got it right. Snow started to fall heavily and the roads were getting bad. Kate and I make it to the lovely Red Roof Inn in Syracuse--my stomping grounds. I hunker down and look outside. It is gorgeous outside. A winter wonderland.
Friday I get up early turn on television. At least a foot of snow fell and it is cold--dangerous cold. It is -8 f. and the windchill is about -30 f. My kind of cold. This is the sort of cold I love. My wheelchair lets me know it. The rear wheels quick release freeze and the metal of the wheelchair itself krinks and crackles in only a way only I am aware of. Here is how I looked before I went out.
I have my warmest wool hat on and feel like a marshmallow man. I am ready. Before I went to bed the night before I brushed off the car and still needed 90 minute to achieve the blow:
I get in the car heading to Niagara Falls by 8AM. Pulled into Niagara Falls by lunchtime happy, hungry, and tired. I ate lunch, Jennifer interviewed me and we went out to dinner in the casino complex. Yikes, a casino is license to print money. I thought the odds of winning at the horse track were bad. At the casino the odds are worse--much worse. I also saw lots of men my age walking around with tall slender well made up young women. No idea how to wrap my head around that! I am happily middle aged and like women my age. No skirt chasing after young women for this old fart.
Today was tourist day. Walked around Victoria Park with Kate and went to a local rink where I watched some kids play hockey. Man, I miss hockey. My heart has just not been into it this season. Meeting up later with my friend Barb Farlow and her clan. All in all a great trip. Though I will confess I am bit sore. Being active in cold I find very tiring. Head home tomorrow. Travel log over.
How does a paralyzed man prepare for such a trip? Actually the question should be how does a paralyzed guy safely and carefully prepare for such a trip. Basic logic. Watch the forecast carefully and improvise at a moments notice. I planned to leave well before sunrise on Friday for the six hour drive. No chance that will work. I decide to leave on Thursday morning before the storm hits and drive as far north and mostly west as I can before dark or snow hits. I head directly into the storm. I pack smartly. Three pairs of gloves with glove liners. A spectacularly warm jacket I got from Canadian tire. A hunting jacket replete with pockets for bullets. A back up down bubble jacket. Two strips of rubber in case I get stuck in snow. Two blankets for Kate and emergency blanket. A good shovel and car brush. Warm clothes--multiple sets of warm cloths. Nothing is taken for chance. Remember I was a Boy Scout leader! I am prepared.
I plan to go as far as Buffalo but know I will stop well before if the roads get bad. Buffalo is ambitious and before I hit Syracuse I know I will never make it. I aim for Syracuse. The drive is uneventful until the last 30 minutes. The forecasters got it right. Snow started to fall heavily and the roads were getting bad. Kate and I make it to the lovely Red Roof Inn in Syracuse--my stomping grounds. I hunker down and look outside. It is gorgeous outside. A winter wonderland.
Friday I get up early turn on television. At least a foot of snow fell and it is cold--dangerous cold. It is -8 f. and the windchill is about -30 f. My kind of cold. This is the sort of cold I love. My wheelchair lets me know it. The rear wheels quick release freeze and the metal of the wheelchair itself krinks and crackles in only a way only I am aware of. Here is how I looked before I went out.
Today was tourist day. Walked around Victoria Park with Kate and went to a local rink where I watched some kids play hockey. Man, I miss hockey. My heart has just not been into it this season. Meeting up later with my friend Barb Farlow and her clan. All in all a great trip. Though I will confess I am bit sore. Being active in cold I find very tiring. Head home tomorrow. Travel log over.
Wednesday, January 1, 2014
Melancholy: A Post for My Good Friend Stephen Kuusisto
Melancholy is defined as a pensive feeling of sadness that has no identifiable cause or reason. The Greeks referred to melancholy as the black bile. A clinical psychiatrist would consider melancholy to be a mood disorder. When I think about melancholy, and worse experience it, I think of my ex-wife who was an artist. When we met I knew nothing about art. During our marriage I learned a lot. I recall one image in particular by Albrecht Durer.
I saw the above once somewhere in New York City decades ago. I think it was at the New York Public Library. I could be wrong. I looked at this for a very long time. The sadness oozed out of the image and caused me to experience emotional distress. Drurer must have known melancholy intimately. I suspect every human being has had bouts of melancholy. Robert Burton wrote the first known text on melancholy, Anatomy of Melancholy, in 1621. The book was supposed to be a medical text. Instead it is a fine piece of literature; however, it is not the best book to read when you are alone on New Year's Eve--a New Year's Eve that was preceded by a horrible Thanksgiving and Christmas. Yet famous lines such as "There is no such thing as happiness, only lesser shades of melancholy" struck a chord with me.
I suspect melancholy fits prominently in the lives of all people with a disability. A normal existence, to be ordinary, is virtually impossible. Forget about the ADA. Forget about the past 40 years of progressive legislation designed to empower people with a disability. Disability as tragedy is a narrative that is stunningly persistent. Disability explains all. If I succeed I overcame my disability. If I fail it is understandable because I have a disability. If I am happy it is because I have character and did not let disability hold me back. If I am sad, well, who wouldn't be sad after paralysis. If in love the woman I am with is a special person (almost a saint) able to overlook my disability. If I am alone well who can expect a woman to marry a crippled man. If I publish an article in a peer reviewed journal I am praised for my unique insights into disability. If I have an article rejected well I am too strident and disability clouds my view. I could go on but I think my point is clear. Everything I do begins and ends with disability. This is why we people with a disability experience melancholy. This is why we people with a disability were once known to have a "cripple's disposition". This is why I am often charged with being "bitter" about my disability or that I have a chip on my shoulder. When I hear this I want to bang my head against the wall in frustration or humorously note that I have a boulder on my shoulder. Warning for my crippled brethren: stating you have a "boulder on your shoulder" after a few stiff drinks is not easy.
The divide between my life as a crippled man and the life of a man my age who is bipedal, typical if you will, is immense. The divide is much less physical than it is cultural. My existence is less valuable. The respect I garner is negligible. My competence is always called into question. My abilities are less. All people see are what I cannot do. I doubt many bipedal men are told how remarkable they are when they get in and out of their car. In short, I have a social disease and I am not talking about an STD.
The disability divide to me is pretty basic. All I know and care about is what I can do. All I think about is what I have done and will do in the future. I know only how to drive forward through good and bad. I endure and adapt. How I do that has varied over my life span. And here I sit 35+ years post paralysis and remain eternally perplexed why others, bipedal typical others, cannot grasp this most basic concept. I am a fucking human being. I eat, piss, and shit. I like sex. I can fall in love. I can have my heart broken. I can do my job. I can teach. I can drive. I can be happy. I can be morose. I can be normal if only society would let me. Instead I remain a spectacle. I am a problem. Equal access is a burden--a costly burden. The ADA is an unfunded mandate! Forget social supports that make life possible. That would imply people like me could have a life when we all know disability is a fate worse than death. Worse, disability from an ableist perspective is an individual problem. Civil rights never enters the framework. Again, this makes me want to bang my head against a wall in frustration. It also makes me think back to my testimony in Boston against assisted suicide legislation. A very nice man in support of suicide kept trying to engage me. His son was paralyzed. He understood disability. I know what it is like. He told me his paralyzed son needed to have the choice and control over the circumstances of his death. I told this man end of life issue are a lot more complex and that choices are framed in ways that are deadly. I mentioned Tim Bowers. He did not hear a word. He pointed to a copy of the proposed assisted suicide legislation and said disability had nothing to with it. He fiercely tapped a copy of the bill and highlighted in yellow was the following "A person may not qualify [for assisted suicide] solely because of age or disability." This was proof positive in his estimation all my concerns and those presented by disability rights activists had no foundation in fact. How I wish this were true. How I wish bias and bigotry could be eliminated with the swoop of a pen and in a single sentence no less. This exchange is the cause of my New Year's Day melancholy. If the parent of a paralyzed man does not get it, if this man, a doctor no less, is so oblivious hope for the future is bleak. Like it or lump I will never be normal. Maybe this is not such a bad thing. Hence my screen saver these days is below.
I saw the above once somewhere in New York City decades ago. I think it was at the New York Public Library. I could be wrong. I looked at this for a very long time. The sadness oozed out of the image and caused me to experience emotional distress. Drurer must have known melancholy intimately. I suspect every human being has had bouts of melancholy. Robert Burton wrote the first known text on melancholy, Anatomy of Melancholy, in 1621. The book was supposed to be a medical text. Instead it is a fine piece of literature; however, it is not the best book to read when you are alone on New Year's Eve--a New Year's Eve that was preceded by a horrible Thanksgiving and Christmas. Yet famous lines such as "There is no such thing as happiness, only lesser shades of melancholy" struck a chord with me.
I suspect melancholy fits prominently in the lives of all people with a disability. A normal existence, to be ordinary, is virtually impossible. Forget about the ADA. Forget about the past 40 years of progressive legislation designed to empower people with a disability. Disability as tragedy is a narrative that is stunningly persistent. Disability explains all. If I succeed I overcame my disability. If I fail it is understandable because I have a disability. If I am happy it is because I have character and did not let disability hold me back. If I am sad, well, who wouldn't be sad after paralysis. If in love the woman I am with is a special person (almost a saint) able to overlook my disability. If I am alone well who can expect a woman to marry a crippled man. If I publish an article in a peer reviewed journal I am praised for my unique insights into disability. If I have an article rejected well I am too strident and disability clouds my view. I could go on but I think my point is clear. Everything I do begins and ends with disability. This is why we people with a disability experience melancholy. This is why we people with a disability were once known to have a "cripple's disposition". This is why I am often charged with being "bitter" about my disability or that I have a chip on my shoulder. When I hear this I want to bang my head against the wall in frustration or humorously note that I have a boulder on my shoulder. Warning for my crippled brethren: stating you have a "boulder on your shoulder" after a few stiff drinks is not easy.
The divide between my life as a crippled man and the life of a man my age who is bipedal, typical if you will, is immense. The divide is much less physical than it is cultural. My existence is less valuable. The respect I garner is negligible. My competence is always called into question. My abilities are less. All people see are what I cannot do. I doubt many bipedal men are told how remarkable they are when they get in and out of their car. In short, I have a social disease and I am not talking about an STD.
The disability divide to me is pretty basic. All I know and care about is what I can do. All I think about is what I have done and will do in the future. I know only how to drive forward through good and bad. I endure and adapt. How I do that has varied over my life span. And here I sit 35+ years post paralysis and remain eternally perplexed why others, bipedal typical others, cannot grasp this most basic concept. I am a fucking human being. I eat, piss, and shit. I like sex. I can fall in love. I can have my heart broken. I can do my job. I can teach. I can drive. I can be happy. I can be morose. I can be normal if only society would let me. Instead I remain a spectacle. I am a problem. Equal access is a burden--a costly burden. The ADA is an unfunded mandate! Forget social supports that make life possible. That would imply people like me could have a life when we all know disability is a fate worse than death. Worse, disability from an ableist perspective is an individual problem. Civil rights never enters the framework. Again, this makes me want to bang my head against a wall in frustration. It also makes me think back to my testimony in Boston against assisted suicide legislation. A very nice man in support of suicide kept trying to engage me. His son was paralyzed. He understood disability. I know what it is like. He told me his paralyzed son needed to have the choice and control over the circumstances of his death. I told this man end of life issue are a lot more complex and that choices are framed in ways that are deadly. I mentioned Tim Bowers. He did not hear a word. He pointed to a copy of the proposed assisted suicide legislation and said disability had nothing to with it. He fiercely tapped a copy of the bill and highlighted in yellow was the following "A person may not qualify [for assisted suicide] solely because of age or disability." This was proof positive in his estimation all my concerns and those presented by disability rights activists had no foundation in fact. How I wish this were true. How I wish bias and bigotry could be eliminated with the swoop of a pen and in a single sentence no less. This exchange is the cause of my New Year's Day melancholy. If the parent of a paralyzed man does not get it, if this man, a doctor no less, is so oblivious hope for the future is bleak. Like it or lump I will never be normal. Maybe this is not such a bad thing. Hence my screen saver these days is below.
Tuesday, December 24, 2013
The Relentless Push for Assisted Suicide Legislation
Relentless. Those that seek to pass assisted suicide legislation into law are relentless. Nothing will disuade them from their goal. I have not observed this sort of commitment outside of religious or political fanaticism. I am not suggesting the people and organizations that advocate for assisted suicide are fanatics. Quite the contrary, most are good people with a strong opinion on an important topic. Most that advocate for assisted suicide are white, middle aged, and well educated. I will acknowledge they have good reason to be concerned about the way we die. To witness the bad death of a parent, spouse, sibling, child, or close friend is a horrific life changing experience. What advocates fail to grasp is people die badly for cultural reasons. Americans fear death and value autonomy above all else. I find it tiresome to hear people state that when I cannot control my bladder and bowels I want to die. I will not let another person wipe my ass, dress my body, and feed me. I would rather die than go to a nursing home. All of this undermines a narrow concept of autonomy.
Recently I came across an article circa 1996 by one of my former professors, Cheryl Mwaria. In “Physician-Assisted Suicide: An Anthropological Perspective” she wrote “Missing from this debate is a discussion of the social consequences of hidden expectations and obligations with respect to access to health care, allocation of resources, terminal and chronic illness, disability, difference, suffering, and the nature of death itself”. Anthropologists have known that the end of life and suicide are perceived quite differently from culture to culture. This is not exactly news to most social scientists. After all one of Emile Durheim’s most famous texts is Suicide written in 1897. Durkheim observed that there were four types of suicide: Egoistic, Altruistic, Anomic and Fatalistic. For those interested, I urge readers to take a fresh look at Durkheim. I have and in conjunction with the work of Margaret Pabst Battin’s Ethical Issues in Suicide I think it is very hard if not impossible to ignore the cultural reasons why people choose to end their life. Thus the sticker My life. My choice. My Death undermines our ability to understand the social mechanisms that can and do lead to unnecessary deaths. Those most at risk are those with chronic illnesses, the terminally ill, the elderly and those with a disability. Let me put it more bluntly, my life is at risk.
Those that argue assisted suicide is about individual choice, the relief of pain and suffering are being disingenuous. People do not choose to die because they are in pain. People die because their life lacks meaning and they fear losing their autonomy. But groups such as Compassion and Choices that lobby for assisted suicide legislation never define what autonomy or dignity is. A good death is not defined by those for or against assisted suicide legislation. It seems to me a good death can radically differ from one person to the next and from one culture to another. Compassion and Choices would have people believe there is a uniformity in the way people die. This is simply incorrect from a social scientific viewpoint and constructed on sloppy thinking. As Mwaria pointed out a term such as death with dignity encompasses a hidden assumption: “that life with a profound disability is lacking dignity. There is a genuine and warranted fear on the part of many people with profound disabilities that their lives will devalued, considered not worth living”. This plays out in a myriad of ways throughout the life cycle but is most apparent at the start and end of life. Trisomy 13 &18 was until recently considered a condition incompatible with life. Thanks to the work of Barb Farlow and others this belief is changing. Even staunch advocates of assisted suicide such as Battin concede what is known as the social burden argument is “problematic” with regard to physician assisted suicide. Let me be more blunt: people with a disability have good reason to fearful because physicians who do not know anything about life with a disability are the experts and gate keepers when it comes to assisted suicide. What physicians know is the cost in terms of care and finance can be enormous. Here enters scholars such as Peter Singer and other utilitarian philosophers. They have changed the cultural perception of death in academic and popular culture. Rarely do I hear people discuss how we can compassionately care for the sick. Instead the phrase patient centered care is thrown about as the panacea that can correct all wrongs. In reality patient centered care means you are on your own. I never hear people discuss the need for social supports for people with a disability. What I hear and read about is the efficient expenditure of limited health care resources. For most this is an interesting topic of discussion. It is an abstract discussion seeking to help the greater good. For me the subtext is obvious: I am an expensive person. My existence and others like me is costly.
Clearly I am not in a warm and fuzzy mood on Christmas Eve. I am seriously worried about my future. I am a white, single, middle aged man who will grow old alone. This scares me. I am not afraid of dying. Death is inevitable and I plan to squeeze every last ounce of energy out of my body. A body that has served me well despite being paralyzed. I will not under any circumstances go gentle into that good night. I am not worried about myself. I am worried about a nameless and faceless physician who I do not know that will decide I have “suffered enough” or lived long enough. Perhaps I do not need those life saving antibiotics. Perhaps this physician will paint a gloomy picture of the future that any sane person would find unacceptable. I do not envision things getting any better.
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