Does your average person really believe death is preferable to life with a disability? Based on my experience, the answer to this question is yes. Many people would indeed choose death over disability. How do I know this? Strangers have felt free to express this view to me with a stunning regularity. The reasons people prefer death over disability is twofold: first, most people know nothing about disability and are woefully ignorant. Aside from what they see and hear in the media, portraits that are inherently negative and demeaning, most people have no clue the main obstacles people with a disability encounter have nothing to do with a given disability. In spite of more than two decades of legislation geared to empowering people with a disability social obstacles remain overwhelming. Stigma, poverty and disability often are closely associated with one another. Second, most people fear disability. While I would never choose to be paralyzed, my paralysis is the least of my problems--a fact ignored and replaced by trite ideas such as victimhood, bravery, stoicism, and the idea of being a burden upon others. These false assumptions are far too common and I remain shocked so many seem to rely on such well worn and dated beliefs. Disability is no big deal and most people, ordinary people such as myself, are resourceful, willing and able to adapt. Thus I see my wheelchair, the ever present symbol of disability as a simple human adaptation: something we humans have been doing in various forms for millions of years.
If you accept the premise that more people prefer death to a life with disability then Montana is not a place to live. Here I refer to anyone who has a disability or lacks human dignity. The New York Times, Wall Street Journal and other national news outlets are reporting about the Bill Baxter case. For those unfamiliar with Baxter he died of cancer and fought not to live but die with the help of his doctor. Montana's highest court will decide this week if Mr. Baxter's claim a doctor's refusal to help him die violated his rights under the Montana's State Constitution. This would be an interesting legal question if lives were not at stake. If Baxter's position is upheld Montana would become the first state to declare an assisted death to be a constitutional right. Montana's constitution holds that "the dignity of the human being is inviolable". I can only assume not all humans are perceived in the same light. Among those that come to mind are those with a chronic illness, the elderly and people with a disability. I suppose the court like the rest of society sees some people as not fully human and thereby lack dignity. Much of course depends upon on what defines us as human and dignified. I consider myself to be fully human. I would also like to believe I have a certain amount of dignity. Much to my chagrin, many strangers that see me go by do not consider me fully human and certainly not dignified. A few have told me directly "I would rather be dead than in a wheelchair". This statement is in reality a belief: the lives of some people, my crippled ass in this case, is not worth living. This is dangerous thinking for those such as myself and others who are being judged. These sort of judgments slip into our news media and sacred institutions. Hospitals, courts, government institutions are all made up humans who are as flawed as me. Unlike others however I see nothing but possibilities and life when I see people whose life appears difficult from afar. What I think about is why is that life hard, what difficulties do they face and more importantly how do they adapt to them. At no point do I consider them less human and dignified.
The problem of course is how do we define humanity and dignity. I know for a fact that many think my life lacks dignity simply because I use a wheelchair. I try to educate all those I encounter about disability issues but I cannot change the minds of all those I meet. Thus like others who are paralyzed, elderly, or chronically ill I fear large institutions. I do not fear further disability or illness or even pain itself. I fear strangers, smart men and women who populate institutions that do not perceive me as fully human and dignified. What do we do with those that lack such important traits? In Montana we council them to die, to end their suffering. This line of logic is dangerous and has led to movements such as Eugenics. We have a new version of Eugenics today in Montana, Washington and Oregon in the form of assisted suicide. We have people like Kathryn L. Tucker, co-counsel for Mr. Baxter's estate and director of legal affairs for Compassion and Choices (a radical group that advocates for assisted suicide), that thinks in death they are "empowering patients and giving them the right to decide when they have suffered enough". Using this line of logic my life expectancy would be nil. I may not think I am "suffering" but there are a plethora of people that think differently. What worries me even further is what happens when I am older. Will some well meaning doctor decide that after 40 years of paralysis have I "suffered enough". Will my options for "care" be the same as another old man that walks in the door? The answer is not a chance. Like it or not such judgments take place daily. On the positive side, I am accustom to asserting my civil rights, a penchant that may not make me popular but may continue to save my life. Yet I wonder how much sway my own words would have in states like Montana, Oregon and Washington.
Tuesday, September 1, 2009
Monday, August 31, 2009
Flying Can be Hassle Free
My son and I spent the last week in the Seattle area. We ate our way through Pike Street Market, thoroughly enjoying outstanding produce and fresh sea food. We also spent much time people watching. My son looked at a few colleges he is interested in attending when he graduates from high-school. As for me, I forgot how much I enjoy urban life. Seattle is a vibrant city, has wonderful museums, and the waterfront is beautiful. What I did not enjoy was the crowds. It never ceases to amaze me how people react to my presence. I lost count of the times I heard "Watch out a wheelchair!" What this means is a mystery. I have not heard of any run away wheelchair users hell bent on injuring those that ambulate on two feet. What exactly are people watching out for? Are they afraid I will crash into them or are they just afraid of my presence. I eventually had enough of this and during the week a proverbial light bulb went off in my head. When a person stated "Watch out for the wheelchair" I would turn to my son an mimic their voice: "Watch out for the lady in the pink shirt". In return I got a few puzzled looks, one or two nasty replies, and much to my delight a few people seemed to get it. The comment, "watch out for the wheelchair" was dehumanizing and unnecessary. A small victory was had and I was proud to apply my anthropological knowledge to an every day situation. I felt very Goffmanesque!
What was really remarkable about our trip was how unremarkable our flight to and from Seattle was. I have always relied on major airlines such as Delta, Northwest, United, American, etc. My experience with these airlines is routinely horrible (exceptions exist of course). I have found ground and flight crews to be uniformly rude, demeaning, and uncoperative. I understand why this is the case. They are under intense pressure, over worked, under paid, and confronted by stressed out passengers who too often check their luggage and brains. However, I am a veteran traveler, need minimal or no help, and know how to board a plane quickly. What bothers me the most about airlines is the look and attitude airline employees seem to reserve for passengers with a disability. For those who travel a lot you will know what I am referring to: a look of disadain and dread is common when we appear. I often feel as though when I arrive to the gate I have the plague. This did not happen on our trip to Seattle. We flew on Jet Blue, an airline I have avoided in the past because I thought discount airlines would provide inferior service. When making reservations I wondered about this line of reasoning. No airline provides adequate customer support so why should I pay extra to be treated rudely? Screw Delta and Northwest.
I assumed Jet Blue would be like every other airline and treat me and my son poorly. Yet a funny thing happened on our trip. We were treated the same as any other passenger. Sure we still had to board first and got off last--standard operating procedure for every airline. An aisle chair was at the gate, on board the plane, and this was perceived by Jet Blue emplyees to be the norm. This is what I never feel like when I fly--normal. My presense was not perceived to be out of the ordinary, getting on and off the plane was stress free, and employees were polite. I have no idea if this is the norm for Jet Blue. Maybe we just got lucky. However I have heard from friends who fly on a regular basis that Jet Blue treats passengers with a disability like anyone else. What a radical idea! I wonder if this is corporate policy or due to the fact Jet Blue provides no services historically associated with airline travel. Expectations are severely limited. Jet Blue serves no food though free snacks and soft drinks are provided. They also charge passengers for every conceiveble item: $7 for a pillow and blanket, $2 for head phones and I was too cheap to inquire about the price of a movie. I was too happy regaling in my normality. Jet Blue won my business for the most basic reason--I was treated with respect and dignity.
What was really remarkable about our trip was how unremarkable our flight to and from Seattle was. I have always relied on major airlines such as Delta, Northwest, United, American, etc. My experience with these airlines is routinely horrible (exceptions exist of course). I have found ground and flight crews to be uniformly rude, demeaning, and uncoperative. I understand why this is the case. They are under intense pressure, over worked, under paid, and confronted by stressed out passengers who too often check their luggage and brains. However, I am a veteran traveler, need minimal or no help, and know how to board a plane quickly. What bothers me the most about airlines is the look and attitude airline employees seem to reserve for passengers with a disability. For those who travel a lot you will know what I am referring to: a look of disadain and dread is common when we appear. I often feel as though when I arrive to the gate I have the plague. This did not happen on our trip to Seattle. We flew on Jet Blue, an airline I have avoided in the past because I thought discount airlines would provide inferior service. When making reservations I wondered about this line of reasoning. No airline provides adequate customer support so why should I pay extra to be treated rudely? Screw Delta and Northwest.
I assumed Jet Blue would be like every other airline and treat me and my son poorly. Yet a funny thing happened on our trip. We were treated the same as any other passenger. Sure we still had to board first and got off last--standard operating procedure for every airline. An aisle chair was at the gate, on board the plane, and this was perceived by Jet Blue emplyees to be the norm. This is what I never feel like when I fly--normal. My presense was not perceived to be out of the ordinary, getting on and off the plane was stress free, and employees were polite. I have no idea if this is the norm for Jet Blue. Maybe we just got lucky. However I have heard from friends who fly on a regular basis that Jet Blue treats passengers with a disability like anyone else. What a radical idea! I wonder if this is corporate policy or due to the fact Jet Blue provides no services historically associated with airline travel. Expectations are severely limited. Jet Blue serves no food though free snacks and soft drinks are provided. They also charge passengers for every conceiveble item: $7 for a pillow and blanket, $2 for head phones and I was too cheap to inquire about the price of a movie. I was too happy regaling in my normality. Jet Blue won my business for the most basic reason--I was treated with respect and dignity.
Monday, August 17, 2009
Barriers to Higher Education Remain the Norm
Two recent reports from abroad have disheartened me. The first, a comprehensive report from the Australian Government, Shut Out, details the experience of people with disabilities. It is grim reading. Australian people with disabilities are isolate, rejected, neglected, abandoned and too often abused. The second report comes from Great Britain. BBC News and other media outlets are reporting that "one in five disabled students is being denied access to teaching and study rooms and libraries at universities". A study conducted by the Muscular Dystrophy Campaign found that of eight institutions it looked at in Wales only one had a detailed guide for students with disabilities. Inaccessible buildings, the lack of accessible bathrooms, and limited access to other buildings was not uncommon the MDA found. The lack of access is not restricted to British Universities or Australian society. The United States, the supposed world leader in disability rights, remains hostile to the inclusion of students with disabilities. Sure we have laws like IDEA but it is grossly underfunded. We also have the ADA and yet my son's public school does has a wheelchair lift on one bus--a short bus that carries significant stigma.
The story out of the UK reminded of not only my own experiences prior to the ADA being enacted but the work of Stephen Kuusisto at Planet of the Blind. Kuusisto, without question my favorite writer among many gifted writers in the field of disability studies, has written about his experiences in higher education. What separate Kuusisto from others in disability studies is he is always grounded in reality. Reader of his blog will know he has been critical of the University of Iowa where he teaches for their lack of commitment to wheelchair access. I am sure this does not endear to him to the powers that be. Unlike Kuusisto, I am part of the academic underclass, a part timer, easily replaced--think day worker with a great education--and am too timid to make a stink (I fear being fired). I too encounter substantial barriers where I teach. Purchase College is inhospitable and lacks the most basic commitment to wheelchair access. The services provided students with a disability are a mystery or nonexistent. When I complain, all nod in agreement that better access is needed, and nothing changes. All complaints and requests are ignored. Does this make me mad? You bet it does but I have encountered this problem from the day I entered Columbia University where I got my PhD.
The transition from Hofstra University where I got my BA to Columbia University was startling. At Hofstra there was a long standing and overwhelming commitment to wheelchair access and students with a disability in the broadest sense of the term. The cultural and physical environment was welcoming. At Columbia the exact reverse situation existed. Buildings were inaccessible and the administration had no interest in making the campus accessible. I was among the early trail blazers at Columbia, the first generation of students with a disability who were accepted. Thankfully I had a powerful advocate on my side--Robert Murphy, long time distinguished professor of anthropology and author of the Body Silent and many other books. When I encountered a problem as I invariably did I gave him a call or stopped by his office, the social hub of the department of anthropology. I don't know what he did but every problem I complained about was resolved in 24 hours. In return he expected and told me one thing: Don't screw up because if you do no student with a disability will be accepted for at least 10 years. You must not do well you must be an exceptional student. Talk about pressure! Being a pig headed hard ass I rose to the challenge and graduated from Columbia with distinction.
From what I am told, Columbia is a much different place today. Students with a disability do not encounter too much institutional bias. In spite of this change, higher education remains a difficult place for a student with a disability to navigate. Just as the BBC reported, physical access is no sure thing. Buildings remain inaccessible, administrators close minded, and some professors perceive accommodations as akin to being an advantage. I know this because my professorial peers complain to me that "disabled students expect me to give them extra time for an exam" or "Is it fair for a student to take notes for a student with a disability?" Worse yet, more than one professor has told me "the campus is overrun with students with learning disabilities". For a group of people who are supposed to be smart and open minded comments such as these are a shock. What has really changed is the law--the law is firmly on the side of students with a disability. This is great but does not change the fact the social and academic environment is hostile to the inclusion of people with a disability. Surely the skeptical reader is thinking this bad cripple must be cranky today. His air conditioner is broken and he is venting steam. Sorry but this explanation does not fit. For you skeptics each and every time I teach at some point I ask students a basic question when it seems appropriate: "Has anyone in this class ever had a professor that used a wheelchair". To date, not a single student has answered yes, a span of 15 years. This lack of representation is an overwhelming problem. People with disabilities are rarely if ever academic faculty members. We are not administrators, deans, or university presidents, registrars, board of trustees, provosts, etc. Students with a disability are more common but even their presence is not welcome. So what, I wonder are we teaching college students? There are no professors with a disability and students with a disability are unwanted. Is it any wonder social barriers remain on campus and in society? Not to me and this reminds of when my son was very small. He would ask me "Dad, why are you so unusual, no other fathers use a wheelchair". Stumped for a reply I borrowed a line from Sesame Street and told him: "It is not easy being green". This was true long ago and today. Depressing Monday afternoon thoughts.
The story out of the UK reminded of not only my own experiences prior to the ADA being enacted but the work of Stephen Kuusisto at Planet of the Blind. Kuusisto, without question my favorite writer among many gifted writers in the field of disability studies, has written about his experiences in higher education. What separate Kuusisto from others in disability studies is he is always grounded in reality. Reader of his blog will know he has been critical of the University of Iowa where he teaches for their lack of commitment to wheelchair access. I am sure this does not endear to him to the powers that be. Unlike Kuusisto, I am part of the academic underclass, a part timer, easily replaced--think day worker with a great education--and am too timid to make a stink (I fear being fired). I too encounter substantial barriers where I teach. Purchase College is inhospitable and lacks the most basic commitment to wheelchair access. The services provided students with a disability are a mystery or nonexistent. When I complain, all nod in agreement that better access is needed, and nothing changes. All complaints and requests are ignored. Does this make me mad? You bet it does but I have encountered this problem from the day I entered Columbia University where I got my PhD.
The transition from Hofstra University where I got my BA to Columbia University was startling. At Hofstra there was a long standing and overwhelming commitment to wheelchair access and students with a disability in the broadest sense of the term. The cultural and physical environment was welcoming. At Columbia the exact reverse situation existed. Buildings were inaccessible and the administration had no interest in making the campus accessible. I was among the early trail blazers at Columbia, the first generation of students with a disability who were accepted. Thankfully I had a powerful advocate on my side--Robert Murphy, long time distinguished professor of anthropology and author of the Body Silent and many other books. When I encountered a problem as I invariably did I gave him a call or stopped by his office, the social hub of the department of anthropology. I don't know what he did but every problem I complained about was resolved in 24 hours. In return he expected and told me one thing: Don't screw up because if you do no student with a disability will be accepted for at least 10 years. You must not do well you must be an exceptional student. Talk about pressure! Being a pig headed hard ass I rose to the challenge and graduated from Columbia with distinction.
From what I am told, Columbia is a much different place today. Students with a disability do not encounter too much institutional bias. In spite of this change, higher education remains a difficult place for a student with a disability to navigate. Just as the BBC reported, physical access is no sure thing. Buildings remain inaccessible, administrators close minded, and some professors perceive accommodations as akin to being an advantage. I know this because my professorial peers complain to me that "disabled students expect me to give them extra time for an exam" or "Is it fair for a student to take notes for a student with a disability?" Worse yet, more than one professor has told me "the campus is overrun with students with learning disabilities". For a group of people who are supposed to be smart and open minded comments such as these are a shock. What has really changed is the law--the law is firmly on the side of students with a disability. This is great but does not change the fact the social and academic environment is hostile to the inclusion of people with a disability. Surely the skeptical reader is thinking this bad cripple must be cranky today. His air conditioner is broken and he is venting steam. Sorry but this explanation does not fit. For you skeptics each and every time I teach at some point I ask students a basic question when it seems appropriate: "Has anyone in this class ever had a professor that used a wheelchair". To date, not a single student has answered yes, a span of 15 years. This lack of representation is an overwhelming problem. People with disabilities are rarely if ever academic faculty members. We are not administrators, deans, or university presidents, registrars, board of trustees, provosts, etc. Students with a disability are more common but even their presence is not welcome. So what, I wonder are we teaching college students? There are no professors with a disability and students with a disability are unwanted. Is it any wonder social barriers remain on campus and in society? Not to me and this reminds of when my son was very small. He would ask me "Dad, why are you so unusual, no other fathers use a wheelchair". Stumped for a reply I borrowed a line from Sesame Street and told him: "It is not easy being green". This was true long ago and today. Depressing Monday afternoon thoughts.
Friday, August 14, 2009
As Usual the NYT Misses the Point
In today's New York Times sport section there is story about Jerrod Fields, a gifted runner who is an amputee and will compete in the 2012 Paralympic Games. See "An Injured Soldier Re-emerges as a Sprinter". The NYT article is a typical example of how disability is poorly discussed and is yet another lost opportunity to educate the public. Far too much space is devoted to discussing the circumstance of how Fields, a United States Army corporal, lost his leg. The story also relies on a great hook, a line to suck the reader into the story: Fields is quoted as stating: "Cut it off, he told doctors. I want to go back to Iraq". Golly how tough, how manly, how ever so military and, to me, misleading. The stage is set, Fields is not your typical amputee--he is harder than nails. He puts all those other whiners who were injured to shame. This ignores the reality people do not want to think about: the lack of funding for disabled veterans that have lost a limb, poor conditions in veteran administration hospitals, and long waiting lists for needed rehabilitation services.
In focusing on Fields experience in Iraq and his childhood (his parents died when he was very young and he grew up in the inner city of Chicago infested with gangs) the NYT article fails to place value on Fields athletic achievement. He is not simply a world class athlete but rather a amazing man that has overcome physical and social obstacles. While this is may be true, the human interest focus is demeaning. It also neglects to explain the nuances and divisions with the running categories for those that will compete in the Paralympic Games. No mention is made of the significant difference between being a below the knee amputee versus an above the knew amputee. Passing reference is made to Oscar Pistorius, the most well-known Paralympic athlete, and prosthesis technology. In place of these important issues the reader is confronted with melodrama: "Fields acclimated to a prosthetic foot so quickly that he found himself barely missing the real one. He ran swiftly and even did standing backflips". Would such a sentence ever appear in a story about a world class athlete without a disability? Not a chance. The sentence quoted is followed by a comment that Fields had never heard of the Parlympic Games until a fellow soldier told him about them. My first thought when I read this was stories such as the one I was reading were exactly why no one knows what the Paralympic Games are. Instead of legitimate sport coverage of these world class athletes we get human interest fluff. What do readers remember? I read a story about a disabled Iraq veteran that could run really fast with a prosthesis. Here the disability comes first, the person second, the prosthesis third. Absent is the high level of athletic competition and accomplishment. The fact Fields will run against other athletes from all over the world is glossed over and no mention is made of the fact the Paralympic Games are not televised live (they are rebroadcast on the obscure cable station Universal Sports). No wonder Field and most Americans have never heard of the Paralympic Games.
What I find most distressing about the NYT article is that adaptive sports are amazingly exciting. I think anyone with a passing interest in sports would be drawn to the athletes involved, the creative and unique adaptations, technology, and intensity of the competition. Paralympians are intense and colorful athletes that are truly devoted to a given sport and make significant sacrifices to compete. To date, only one popular sporting event, the X Games, has embraced athletes with a disability. The response based on what I have observed is enthusiastic. This enthusiasm is not based on human interest but respect for the skill level of the competitors and athletic achievement. And this, sadly, is what the NYT chose to ignore.
In focusing on Fields experience in Iraq and his childhood (his parents died when he was very young and he grew up in the inner city of Chicago infested with gangs) the NYT article fails to place value on Fields athletic achievement. He is not simply a world class athlete but rather a amazing man that has overcome physical and social obstacles. While this is may be true, the human interest focus is demeaning. It also neglects to explain the nuances and divisions with the running categories for those that will compete in the Paralympic Games. No mention is made of the significant difference between being a below the knee amputee versus an above the knew amputee. Passing reference is made to Oscar Pistorius, the most well-known Paralympic athlete, and prosthesis technology. In place of these important issues the reader is confronted with melodrama: "Fields acclimated to a prosthetic foot so quickly that he found himself barely missing the real one. He ran swiftly and even did standing backflips". Would such a sentence ever appear in a story about a world class athlete without a disability? Not a chance. The sentence quoted is followed by a comment that Fields had never heard of the Parlympic Games until a fellow soldier told him about them. My first thought when I read this was stories such as the one I was reading were exactly why no one knows what the Paralympic Games are. Instead of legitimate sport coverage of these world class athletes we get human interest fluff. What do readers remember? I read a story about a disabled Iraq veteran that could run really fast with a prosthesis. Here the disability comes first, the person second, the prosthesis third. Absent is the high level of athletic competition and accomplishment. The fact Fields will run against other athletes from all over the world is glossed over and no mention is made of the fact the Paralympic Games are not televised live (they are rebroadcast on the obscure cable station Universal Sports). No wonder Field and most Americans have never heard of the Paralympic Games.
What I find most distressing about the NYT article is that adaptive sports are amazingly exciting. I think anyone with a passing interest in sports would be drawn to the athletes involved, the creative and unique adaptations, technology, and intensity of the competition. Paralympians are intense and colorful athletes that are truly devoted to a given sport and make significant sacrifices to compete. To date, only one popular sporting event, the X Games, has embraced athletes with a disability. The response based on what I have observed is enthusiastic. This enthusiasm is not based on human interest but respect for the skill level of the competitors and athletic achievement. And this, sadly, is what the NYT chose to ignore.
Thursday, August 13, 2009
Two Takes on Health Care in the US News and World Report
I am not sure if the current US News and World Report issue represents progress or not. In the US News and World Report two short statements about healthcare reform appear. At issue, Two Takes, are the opposing views of Michael D. Tanner, former senior fellow at the conservative Cato Institute, and Laura Hershey, advocate for people with disabilities and writer. Both Tanner and Hershey were asked "What do you think? Should American healthcare be rationed?"
As one would expect, Tanner and Hershey views are diametrically opposed to one another. Tanner thinks health care is a valuable commodity, a finite one that must be rationed. Hershey points out the inherent dangers of rationing health care for people with a disability. This makes for interesting reading but I find the entire premise undermines disability rights at a fundamental level. Hershey and her life requires explanation and a solid defense. Tanner's existence and life is assumed to have value and he writes from a position of assumed power. This is the exact same issue that Harriet McBryde Johnson wrote about in the New York Times with regard to her meeting and debate with Peter Singer. I thought McBryde won the day but I must be wrong because Tanner and Hershey cover similar fundamental grounds. Why do we people with a disability need to justify our existence? Why do people assume my life and the lives of others with a disability are inherently less valuable? This puzzles me as I have been retrospective lately. Growing up in the late 1960s and early 1970s with a profound neurological deficit was hard. Pediatric neurology was in in its infancy, modern diagnostic tools such as an MRI or CAT scan were figments of people's imagination. The prospects for morbidly sick children such as myself was grim, the overwhelming majority died. The result was that I physically suffered as a child but one thing I never worried about was my healthcare. Technological marvels did not exist, hospitals were sterile and cold environments that controlled every aspect of my life but those charged with my care did a marvelous job. I never doubted my humanity in large part because health care was not rationed nor was it perceived to be a valuable finite commodity. If health care is in fact a commodity I should have died--a massive amount of health care dollars and human labor was spent keeping me alive. This was done without question and I shudder to think of what happens today to people whose care is expensive. Thus like McBryde, I fear what she called the "disability gulag". This metaphorical gulag is not limited to nursing homes but rather is on my mind every time I visit a doctor, enter a hospital ER, and access healthcare in the broadest sense of the term. Will my paralyzed body be perceived to be inherently problematic and expensive? Will I receive the same sort of medical treatment as a person that walked in the door? Will it be assumed I am physically and cognitively disabled? If I have a stroke, will some over tired resident or attending physician assume I do not want to live because I have already suffered enough?
I sincerely doubt the sorts of questions that run through my mind go through the minds of people without a disability. Our bodies, disabled bodies, are out of the norm, subject to intense scrutiny and people such as myself have put a tremendous amount of thought into why this is the case. This is why we people with a disability and those that study disability need to have a voice when health care reform is subject to discussion. My life is at stake as is the life of other people with a disability. If you question this I suggest you read what Laura Hershey has written in the US News and World Report. When she was admitted to the hospital for pneumonia she was asked not once but twice by nurses "Do you have a DNR order?" I have no doubt this question was asked because of her disability. Like other smart activists all too familiar with disability rights her reply was classic: "I came to the hospital to get better not die". Score one for disability rights, nil for ignorance! This story highlights that healthcare is deeply ingrained in our culture and those disenfranchised like Hershey are the people most likely to experience discrimination. Like I said, a lot is at stake--my life.
As one would expect, Tanner and Hershey views are diametrically opposed to one another. Tanner thinks health care is a valuable commodity, a finite one that must be rationed. Hershey points out the inherent dangers of rationing health care for people with a disability. This makes for interesting reading but I find the entire premise undermines disability rights at a fundamental level. Hershey and her life requires explanation and a solid defense. Tanner's existence and life is assumed to have value and he writes from a position of assumed power. This is the exact same issue that Harriet McBryde Johnson wrote about in the New York Times with regard to her meeting and debate with Peter Singer. I thought McBryde won the day but I must be wrong because Tanner and Hershey cover similar fundamental grounds. Why do we people with a disability need to justify our existence? Why do people assume my life and the lives of others with a disability are inherently less valuable? This puzzles me as I have been retrospective lately. Growing up in the late 1960s and early 1970s with a profound neurological deficit was hard. Pediatric neurology was in in its infancy, modern diagnostic tools such as an MRI or CAT scan were figments of people's imagination. The prospects for morbidly sick children such as myself was grim, the overwhelming majority died. The result was that I physically suffered as a child but one thing I never worried about was my healthcare. Technological marvels did not exist, hospitals were sterile and cold environments that controlled every aspect of my life but those charged with my care did a marvelous job. I never doubted my humanity in large part because health care was not rationed nor was it perceived to be a valuable finite commodity. If health care is in fact a commodity I should have died--a massive amount of health care dollars and human labor was spent keeping me alive. This was done without question and I shudder to think of what happens today to people whose care is expensive. Thus like McBryde, I fear what she called the "disability gulag". This metaphorical gulag is not limited to nursing homes but rather is on my mind every time I visit a doctor, enter a hospital ER, and access healthcare in the broadest sense of the term. Will my paralyzed body be perceived to be inherently problematic and expensive? Will I receive the same sort of medical treatment as a person that walked in the door? Will it be assumed I am physically and cognitively disabled? If I have a stroke, will some over tired resident or attending physician assume I do not want to live because I have already suffered enough?
I sincerely doubt the sorts of questions that run through my mind go through the minds of people without a disability. Our bodies, disabled bodies, are out of the norm, subject to intense scrutiny and people such as myself have put a tremendous amount of thought into why this is the case. This is why we people with a disability and those that study disability need to have a voice when health care reform is subject to discussion. My life is at stake as is the life of other people with a disability. If you question this I suggest you read what Laura Hershey has written in the US News and World Report. When she was admitted to the hospital for pneumonia she was asked not once but twice by nurses "Do you have a DNR order?" I have no doubt this question was asked because of her disability. Like other smart activists all too familiar with disability rights her reply was classic: "I came to the hospital to get better not die". Score one for disability rights, nil for ignorance! This story highlights that healthcare is deeply ingrained in our culture and those disenfranchised like Hershey are the people most likely to experience discrimination. Like I said, a lot is at stake--my life.
Wednesday, August 12, 2009
More on Health Care Hysteria
I read many blogs that are disability related. I never cease to be amazed by the high quality of writing I encounter and often wonder why the mainstream media is so dreadful. Disability is almost always poorly covered, reliant on antiquated stereotypes, and worn out cliches. When I read blogs I come across vibrant writing, thought provoking ideas, funny stories, anger, happiness, interesting human adaptations and a wide range of emotions. This morning over coffee I got a great chuckle from one such blog, the19thfloor.net and the following paragraph that touched upon the health care debate:
"Conservatives love to pretend they're the disability community's knights in shining armor when it suits their political purposes. In years past, they tried to co-opt us in the abortion debate by making both subtle and explicit claims that every gimp would be snuffed out in the womb were it not for them staying the liberals' murderous hand. The right has now adapted the tactic to the health care debate, portraying themselves as the defenders and protectors of us meek and vulnerable cripples who dwell in the shadow of a tyrannical and cruel government. I won't win any Pulitzers for this sentence, but they can take their false magnanimity and go fuck themselves."
This paragraph reinforced why I love the well used tag line"piss on pity" employed by disability activists. People, not all but most, don't understand disability is not about a physical or cognitive deficit but the social problems placed on top of an existing deficit. For example, people with a disability are unemployed in great numbers not because they cannot physically work but rather employers will not hire them. This is bigotry plan and simple. In the blogs I read such as the19thfloor.net insight and common experiences abound. In sharp contrast, the mainstream media and politicians such as Sarah Palin, who I quoted in my last post, are disingenuous. They seek to prompt an emotional reaction devoid of thought. Editorials and stories that employe this tactic abound. The great "health care debate", purposely put in quotation marks, is a classic example. As I noted, no such debate is taking place. Instead, the media has a pack mentality in which they go for the jugular. Reason and rational debate are absent. In its place is hysteria, news bites that are short on facts and long on emotion. This is no way to learn and why in spite of my comments I am hopeful about the future. The college students I teach do not read much less think about the print media. When a news story breaks they turn to the internet for information. Sure they likely go to sources such as CNN online but from there they quickly move on to other small sites that are of interest to them. Hence the future is online sources such as blogs and other nontraditional resources. It is on line people will find this little blog and hundreds of others like it where people with disabilities tell it like it is. Thus I am very proud of not only my disability but to be part of a vibrant on line community. Change is coming and I hope to part of it.
"Conservatives love to pretend they're the disability community's knights in shining armor when it suits their political purposes. In years past, they tried to co-opt us in the abortion debate by making both subtle and explicit claims that every gimp would be snuffed out in the womb were it not for them staying the liberals' murderous hand. The right has now adapted the tactic to the health care debate, portraying themselves as the defenders and protectors of us meek and vulnerable cripples who dwell in the shadow of a tyrannical and cruel government. I won't win any Pulitzers for this sentence, but they can take their false magnanimity and go fuck themselves."
This paragraph reinforced why I love the well used tag line"piss on pity" employed by disability activists. People, not all but most, don't understand disability is not about a physical or cognitive deficit but the social problems placed on top of an existing deficit. For example, people with a disability are unemployed in great numbers not because they cannot physically work but rather employers will not hire them. This is bigotry plan and simple. In the blogs I read such as the19thfloor.net insight and common experiences abound. In sharp contrast, the mainstream media and politicians such as Sarah Palin, who I quoted in my last post, are disingenuous. They seek to prompt an emotional reaction devoid of thought. Editorials and stories that employe this tactic abound. The great "health care debate", purposely put in quotation marks, is a classic example. As I noted, no such debate is taking place. Instead, the media has a pack mentality in which they go for the jugular. Reason and rational debate are absent. In its place is hysteria, news bites that are short on facts and long on emotion. This is no way to learn and why in spite of my comments I am hopeful about the future. The college students I teach do not read much less think about the print media. When a news story breaks they turn to the internet for information. Sure they likely go to sources such as CNN online but from there they quickly move on to other small sites that are of interest to them. Hence the future is online sources such as blogs and other nontraditional resources. It is on line people will find this little blog and hundreds of others like it where people with disabilities tell it like it is. Thus I am very proud of not only my disability but to be part of a vibrant on line community. Change is coming and I hope to part of it.
Tuesday, August 11, 2009
There is No Health Care Debate
The harder President Obama pushes for health care reform the more hysterical its advocates and proponents become. In this "debate" not a single individual or political entity has impressed me. The Democrats and Republicans are doing what they do best--being politicians with an extreme bias. Semantics, power plays, harsh sounds bites are all the norm. Nuanced debate is absent. Reason is replaced by inflexible and rigid unchanging views. Into this void is Obama who appears with every passing day to be the master at political compromise. This is bitterly disappointing to me but anything and anyone is better than former President Bush and his Republican administration. This thought came to me when I read Sarah Palin's Facebook commentary about health care. She wrote:
"The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."
Pailn's rhetoric, right or wrong, is counter productive. I have chosen this quote because of the use of the word evil. It reminded me of Bush, the abuse of religion on the part of politicians, and the utter lack of the ability to enter into a reasonable discussion about health care reform. To be fair, I need not rely on Palin's words. Nancy Pelosi, on the other side of the debate, is equally inflexible and hysterical. Both those for and against health care reform raise good points. For instance, I agree with Palin that people who are elderly or disabled are likely to to suffer if health care reform is passed as it currently is proposed. This doe s not make the proposal, HR 3200, "evil", rather inherently flawed. Instead of using such inflammatory wording Palin could have stated that funding for people like her son in the form of group homes is grossly under inadequate. She could have noted that group homes still encounter stiff resistance when they open and question why is this the case. This in turn could have led her to discuss the history of discrimination people with cognitive disabilities have experienced thus emphasizing the need to fund group homes and community based living for people with disabilities and the elderly.
I do not see a debate taking place about health care reform among the general population as well. I was away last weekend and attended a great party. Surrounded by conservatives who oppose Obama I was taken aback by the vigor with which they opposed health care reform. Obama was characterized as being a "communist", one who wanted to destroy capitalism, and that providing "free health care to people who did not have a real job would kill the economy". When I asked what should be people who are ill or elderly do if they have no health insurance they had no reply. I asked what do they suggest paralyzed people do when a wheelchair breaks and the replacement cost is $5,000 and not covered by insurance. I also asked did it make any economic sense that medications are so expensive it leads many to go bankrupt. Again, they had no ready answer. I asked these questions not to undermine their thoughts, well maybe I did, but to get them to think in a more nuanced way. Health care reform is in my estimation needed, especially for people who face staggering medical bills and cannot afford insurance. This fact is acknowledged but again extreme views and examples are used to illustrate this point. Thus I lay blame with not only politicians who rely on rhetoric and sound bites but the media that thrives on such clips. Whipping people into a frenzy is all too easy. Debate, reasonable discussions among those that disagree but are respectful to the opposition does not exactly make must see television. Think CSPAN and a long detailed discussion of the minutiae of the 1,017 page health care reform bill. Such viewing may not be entertaining but it sure is important. I simply wish we had much more of this.
"The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."
Pailn's rhetoric, right or wrong, is counter productive. I have chosen this quote because of the use of the word evil. It reminded me of Bush, the abuse of religion on the part of politicians, and the utter lack of the ability to enter into a reasonable discussion about health care reform. To be fair, I need not rely on Palin's words. Nancy Pelosi, on the other side of the debate, is equally inflexible and hysterical. Both those for and against health care reform raise good points. For instance, I agree with Palin that people who are elderly or disabled are likely to to suffer if health care reform is passed as it currently is proposed. This doe s not make the proposal, HR 3200, "evil", rather inherently flawed. Instead of using such inflammatory wording Palin could have stated that funding for people like her son in the form of group homes is grossly under inadequate. She could have noted that group homes still encounter stiff resistance when they open and question why is this the case. This in turn could have led her to discuss the history of discrimination people with cognitive disabilities have experienced thus emphasizing the need to fund group homes and community based living for people with disabilities and the elderly.
I do not see a debate taking place about health care reform among the general population as well. I was away last weekend and attended a great party. Surrounded by conservatives who oppose Obama I was taken aback by the vigor with which they opposed health care reform. Obama was characterized as being a "communist", one who wanted to destroy capitalism, and that providing "free health care to people who did not have a real job would kill the economy". When I asked what should be people who are ill or elderly do if they have no health insurance they had no reply. I asked what do they suggest paralyzed people do when a wheelchair breaks and the replacement cost is $5,000 and not covered by insurance. I also asked did it make any economic sense that medications are so expensive it leads many to go bankrupt. Again, they had no ready answer. I asked these questions not to undermine their thoughts, well maybe I did, but to get them to think in a more nuanced way. Health care reform is in my estimation needed, especially for people who face staggering medical bills and cannot afford insurance. This fact is acknowledged but again extreme views and examples are used to illustrate this point. Thus I lay blame with not only politicians who rely on rhetoric and sound bites but the media that thrives on such clips. Whipping people into a frenzy is all too easy. Debate, reasonable discussions among those that disagree but are respectful to the opposition does not exactly make must see television. Think CSPAN and a long detailed discussion of the minutiae of the 1,017 page health care reform bill. Such viewing may not be entertaining but it sure is important. I simply wish we had much more of this.
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