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Saturday, January 11, 2014

The Screwed up World of ADA Accommodations

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.

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. 

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: 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: 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:

 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: 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.