This is the hardest post I will ever wriite--and it will be the first of many. This post is hard to write because it is being written from a hospital bed, a bed I will be stuck in for months. This statement is humiliating because I have spent the last 32 years thinking I am smarter and more careful than my paralyzed peers. No more do I have the right to feel superior. Like many others I have developed a huge pressure sore. Let me be more blunt. I have a giant 4x4 hole in my right hip. I am learning much about modern wound care. I have a KCI wound vacuum on my hip. I hope it will heal by Christmas. My life between now and then will be costly in the extreme. All that I do daily is compromised. From a practical perspective I am working on the logistics and they are complex and daunting. For now I am trapped in the hospital until medically stable.
The point of this post is to explain my silence and start a daily record of my long physical recovery and return to independence. I have never read about such an experience. It is my hope that paralyzed people and others wish severe skin issues will read my words and learn from my mistake and experiences. So please check your skin, really carefully. Get naked, get a miror, or better yet, a friend and give yourself a once over. Too tired to write more more but much, much more to come.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Wednesday, September 15, 2010
Disaster: Hole in the Hip
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Thursday, September 2, 2010
Fox News, John Stossel and a Disaster to Come
I just read over at Planet of the Blind John Stossel, a fierce and long time critic of the ADA, will have a show on tonight at Fox News. Yes, more misleading anti-ADA rhetoric under the guise of journalism will reach millions of viewers. The program airs at 9PM tonight. If readers want to be aggravated and angered beyond comprehension I suggest they tune in. Once calm at some point tomorrow I will post my reaction. And there goes my night--I am sure to be upset as Stossel has chosen to reference Walter Olson and Greg Perry. These two men hate the ADA as much as Stossel--hard to imagine but true.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
New Ways to Create Social Change
I think the disability rights movement is stagnant. We rely on time tested methods of demonstration and civil disobedience. In the past some actions taken by groups such as ADAPT and Not Dead Yet have been highly effective and I deeply admire the organizers of these groups. Go back a bit farther in history and through the magic of YouTube you can watch protests from the 1970s. I love to watch these old videos--especially the ones posted by the Disability Rights and Education Defense Fund. I get a chuckle at the the clothes people wore, myself included, and shake my head when I see wheelchairs circa 1978. These were real clunkers, mass produced by Everest and Jennings, that were nothing like what people use today. But what is on the forefront of my mind when going down memory lane is how effective demonstrations were. People with disabilities were united, tough, fought the establishment with vigor and for 40 years more often than not won. Forty years of legislation empowering people with disabilities is the legacy of this success. I don't see such successes taking place today. I see people with disabilities under assault by draconian budget cuts designed to hurt the most vulnerable. I shudder when I read the statistics about unemployment and worry about how people with cognitive disabilities are cared for. I see the rise of animosity directed at those that do not fit in on the part of conservatives--think the Tea Party. Worst of all I see and read about ineffective methods of protest reduced to sound bites on local news programs or used as filler in newspapers.
What is the point of the above? We live in an information age that boggles my mind. Information moves at speeds I never dreamed possible. The internet is a large part of my life and I really wonder how I survived without it. The information that is available online is staggering--many can and do live life through on line cyber communities. This is good and bad--but today I want to focus on the good. I want to appeal to young people, our future, who see computers, Ipods, MP3 players, cell phones, etc. as integral part of life. This is the future--multimedia approaches. And this multimedia, hip, online, visually interesting, and funny approach can further disability rights. This is not what disability rights activists have embraced. Part of this is generational--I see this as a fundamental difference between myself and my son. For instance, he sees his computer as a tool, a powerful force that is meant to manipulated and enjoyed. Me, I am afraid of my computer and its mysterious contents. I just pray the damn thing works. Perhaps it is because I teach college students but I think the only way to make effective social and political change today is through online, multimedia, and creative civil disobedience. Here I am thinking along the lines as groups such as Improv Everywhere to far more obscure though no less interesting approaches taken by cripzthecomic. I suggest those unfamiliar with Improv Everywhere take a look at their "actions". Some are very funny, others stupid, but the mass appeal cannot be denied. As for cripthecomic he recently posted about something he called "stair bombing". This London Ontario based person went to a local school, spread about one dollars worth of caution tape across the entrance and posted a sign "Sorry, no access Stairs out of Order". When I saw this I laughed myself silly! All I could think of was all the "No access elevator broken" signs I have come across in my life time. I also could not help but wonder did people circle the building looking for stairs that were not out of order. I cannot help but think this caused a stir--and made people think. And this, making people think and laugh, is exactly what disability rights has failed to do lately. If we can do this, make people think and protest in a way that appeals to young people who do not separate political change from humor we might be onto something big--we might be able to make disability rights cool.
Yes, it is possible to be cool and disabled. I see this all the time when I ski and kayak. What I suggest is that we extend this cool factor to include a dynamic new approach to disability rights. To a degree we have already started this. The existence of hundreds of blogs and Facebook groups devoted to disability rights is a start. But we need to get on the cutting edge of technology and civil protests that are visually and politically appealing. I think it is possible to both teach about disability rights and laugh at the same time. Robert Murphy author of the Body Silent did this all the time before the electronic age. Sadly, I do not have the technological prowess to undertake such a project. Hence i am looking for someone I can exploit that is willing to help. I have lots of ideas about how to rail against exclusion, joblessness, and isolation that remain common place. For example, I was thinking of trying to introduce myself to my neighbors. Of course this is not possible as I own the only accessible house in my town. Now this could be very funny but equally pointed. Why do no accessible houses exist and what are the social implications? Perhaps my ideas are poorly formed but I think they have great potential. Frankly, I think we have no real choice. We in the disability rights community must keep up with the times and embrace technology and modern hip approaches to civil disobedience. Given the dismal state of the economy the need is as great today as it ever was in the past.
What is the point of the above? We live in an information age that boggles my mind. Information moves at speeds I never dreamed possible. The internet is a large part of my life and I really wonder how I survived without it. The information that is available online is staggering--many can and do live life through on line cyber communities. This is good and bad--but today I want to focus on the good. I want to appeal to young people, our future, who see computers, Ipods, MP3 players, cell phones, etc. as integral part of life. This is the future--multimedia approaches. And this multimedia, hip, online, visually interesting, and funny approach can further disability rights. This is not what disability rights activists have embraced. Part of this is generational--I see this as a fundamental difference between myself and my son. For instance, he sees his computer as a tool, a powerful force that is meant to manipulated and enjoyed. Me, I am afraid of my computer and its mysterious contents. I just pray the damn thing works. Perhaps it is because I teach college students but I think the only way to make effective social and political change today is through online, multimedia, and creative civil disobedience. Here I am thinking along the lines as groups such as Improv Everywhere to far more obscure though no less interesting approaches taken by cripzthecomic. I suggest those unfamiliar with Improv Everywhere take a look at their "actions". Some are very funny, others stupid, but the mass appeal cannot be denied. As for cripthecomic he recently posted about something he called "stair bombing". This London Ontario based person went to a local school, spread about one dollars worth of caution tape across the entrance and posted a sign "Sorry, no access Stairs out of Order". When I saw this I laughed myself silly! All I could think of was all the "No access elevator broken" signs I have come across in my life time. I also could not help but wonder did people circle the building looking for stairs that were not out of order. I cannot help but think this caused a stir--and made people think. And this, making people think and laugh, is exactly what disability rights has failed to do lately. If we can do this, make people think and protest in a way that appeals to young people who do not separate political change from humor we might be onto something big--we might be able to make disability rights cool.
Yes, it is possible to be cool and disabled. I see this all the time when I ski and kayak. What I suggest is that we extend this cool factor to include a dynamic new approach to disability rights. To a degree we have already started this. The existence of hundreds of blogs and Facebook groups devoted to disability rights is a start. But we need to get on the cutting edge of technology and civil protests that are visually and politically appealing. I think it is possible to both teach about disability rights and laugh at the same time. Robert Murphy author of the Body Silent did this all the time before the electronic age. Sadly, I do not have the technological prowess to undertake such a project. Hence i am looking for someone I can exploit that is willing to help. I have lots of ideas about how to rail against exclusion, joblessness, and isolation that remain common place. For example, I was thinking of trying to introduce myself to my neighbors. Of course this is not possible as I own the only accessible house in my town. Now this could be very funny but equally pointed. Why do no accessible houses exist and what are the social implications? Perhaps my ideas are poorly formed but I think they have great potential. Frankly, I think we have no real choice. We in the disability rights community must keep up with the times and embrace technology and modern hip approaches to civil disobedience. Given the dismal state of the economy the need is as great today as it ever was in the past.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, September 1, 2010
Informed Consent: A Medical and Political Myth
Since I became an adult I have signed many informed consent forms before medical procedures. I consider these informed consent forms "lawyer flotsam"--they have virtually no bearing on being informed, consenting to a procedure, or being truly aware of what is going to take place. I have signed informed consent forms handed to me seconds before a procedure began that were many pages long. Could I have read the form? Sure, but the social expectation was to sign the document and not put the doctor behind schedule. I have also been overly informed--long ago a resident that did an IVP went into great detail about all that could wrong during the procedure. The fact I had many IVPs before did not deter him from giving me a litany of possible mayhem. Had I not been a veteran of many hospitalizations I would have been very scared, convinced the procedure was a high risk.
Informed consent has been on my mind as when I had surgery weeks ago I signed a boat load of informed consent forms. In fact I signed many forms, a stunning number, that were in my estimation utterly pointless. The paper work involved in getting to an operating room is indeed impressive. Are you William J. Peace born 2/21/60? Yes, a question that was repeated by many others. I also signed a form that stated exactly what surgery I was going to have. Did this mean I was truly informed? In a word, no. However, I was a well informed patient. Why was I well informed? Because I knew the surgeon for 25 years and had spoken to him multiple times about what was going to take place. We had extended discussions about the pros and cons of surgery, the inherent risks, and post surgical care. I also read various medical journals about what was being done and knew my surgery was highly specialized and required a unique skill set. I was and still consider myself very lucky.
My level of Informed consent is not the norm. The vast majority of people that undergo medical procedures, including surgery, have a poor understanding of what they are about to experience. How for instance can a person who has been healthy their entire life and never had more than a yearly physical be truly informed when given a devastating diagnosis and told they need immediate surgery? This person will sign the same forms I did but be far from informed. What about the parents of a child that is a car accident and is seriously injured? This parent will also sign informed consent forms but be far from informed. The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand. Sure veterans such as myself of many hospitalizations get the culture of medicine. Many people with disabilities get the culture of medicine as well. But we are not the average citizen. Complicating maters further is the fact the Catholic Church is in the business of medicine. In the USA the Catholic Church operates 624 hospitals and 499 long term care facilities. A spokeswoman for the U.S. Conference of Catholic Bishops reported "When your mission is rooted in Jesus who healed the sick, only the top quality care will do". What a great line and wonderful sentiment. Don't be fooled by such pleasant sounding words. The Catholic Church is an institution with a checkered past (the same can be said of all organized religions). What sort of informed consent takes place at a Catholic Hospital or Hospice? A very unique type in my estimation, one tied to the doctrines of the Church. For instance in Bellingham a widow is trying to force a Catholic hospice to inform patients about the Death with Dignity Act. The hospice in question, Whatcom, a Catholic owned facility, chose not to participate in the law, part of the law's opt out provision. While I am forcefully opposed to assisted suicide, I am in favor of informed consent. To me that informed consent means knowing the social and political positions of any medical facility. Thus I would never consider entering the doors of a medical facility operated by the Catholic Church. According to Ross Fewing, director of ethics at PeaceHealth, the operator of Whatcom, "Our belief is that life is sacred and that intentionally ending one's life is not something that we would support. It's being consistent with Catholic teaching. Under Catholic moral theology, it would be direct participation in the act". Again, these are nice words provided you share the same moral theology--note the use of the word theology. Religious theology should have no role whatsoever in medical decisions or the running of medical institutions.
So what would truly informed consent involve? A good relationship between medical professionals and the patient that transcends the traditional doctor patient relationship. Ideally a person and his or her doctor should share a bond of some sort or at least a mutual understanding of what is important in life. A patient should know about the doctor's strengths and weakness as well as his or her standing in the medical community. A patient should know exactly where any possible surgery and hospitalization will take place. They should also visit the institution and know what is specializes in. A doctor should also truly inform a patient about what will take place. This requires social skills few doctors possess. For instance, I want to know everything and expect a high level discussion replete with references, an expectation that was met by my surgeon. For me this is the ideal but for others this might not be what they expect or want. Hence, informed consent is myth in my estimation. It is dependent upon complex variables that differ from person to person and institution to institution. I believe hospital administrators and bioethicists truly do the best they can to create informed consent--I just believe it is not possible to generalize with regard to informed consent.
Informed consent has been on my mind as when I had surgery weeks ago I signed a boat load of informed consent forms. In fact I signed many forms, a stunning number, that were in my estimation utterly pointless. The paper work involved in getting to an operating room is indeed impressive. Are you William J. Peace born 2/21/60? Yes, a question that was repeated by many others. I also signed a form that stated exactly what surgery I was going to have. Did this mean I was truly informed? In a word, no. However, I was a well informed patient. Why was I well informed? Because I knew the surgeon for 25 years and had spoken to him multiple times about what was going to take place. We had extended discussions about the pros and cons of surgery, the inherent risks, and post surgical care. I also read various medical journals about what was being done and knew my surgery was highly specialized and required a unique skill set. I was and still consider myself very lucky.
My level of Informed consent is not the norm. The vast majority of people that undergo medical procedures, including surgery, have a poor understanding of what they are about to experience. How for instance can a person who has been healthy their entire life and never had more than a yearly physical be truly informed when given a devastating diagnosis and told they need immediate surgery? This person will sign the same forms I did but be far from informed. What about the parents of a child that is a car accident and is seriously injured? This parent will also sign informed consent forms but be far from informed. The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand. Sure veterans such as myself of many hospitalizations get the culture of medicine. Many people with disabilities get the culture of medicine as well. But we are not the average citizen. Complicating maters further is the fact the Catholic Church is in the business of medicine. In the USA the Catholic Church operates 624 hospitals and 499 long term care facilities. A spokeswoman for the U.S. Conference of Catholic Bishops reported "When your mission is rooted in Jesus who healed the sick, only the top quality care will do". What a great line and wonderful sentiment. Don't be fooled by such pleasant sounding words. The Catholic Church is an institution with a checkered past (the same can be said of all organized religions). What sort of informed consent takes place at a Catholic Hospital or Hospice? A very unique type in my estimation, one tied to the doctrines of the Church. For instance in Bellingham a widow is trying to force a Catholic hospice to inform patients about the Death with Dignity Act. The hospice in question, Whatcom, a Catholic owned facility, chose not to participate in the law, part of the law's opt out provision. While I am forcefully opposed to assisted suicide, I am in favor of informed consent. To me that informed consent means knowing the social and political positions of any medical facility. Thus I would never consider entering the doors of a medical facility operated by the Catholic Church. According to Ross Fewing, director of ethics at PeaceHealth, the operator of Whatcom, "Our belief is that life is sacred and that intentionally ending one's life is not something that we would support. It's being consistent with Catholic teaching. Under Catholic moral theology, it would be direct participation in the act". Again, these are nice words provided you share the same moral theology--note the use of the word theology. Religious theology should have no role whatsoever in medical decisions or the running of medical institutions.
So what would truly informed consent involve? A good relationship between medical professionals and the patient that transcends the traditional doctor patient relationship. Ideally a person and his or her doctor should share a bond of some sort or at least a mutual understanding of what is important in life. A patient should know about the doctor's strengths and weakness as well as his or her standing in the medical community. A patient should know exactly where any possible surgery and hospitalization will take place. They should also visit the institution and know what is specializes in. A doctor should also truly inform a patient about what will take place. This requires social skills few doctors possess. For instance, I want to know everything and expect a high level discussion replete with references, an expectation that was met by my surgeon. For me this is the ideal but for others this might not be what they expect or want. Hence, informed consent is myth in my estimation. It is dependent upon complex variables that differ from person to person and institution to institution. I believe hospital administrators and bioethicists truly do the best they can to create informed consent--I just believe it is not possible to generalize with regard to informed consent.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Friday, August 27, 2010
Business Discrimination Worries: Easy Jet
Any person knows domestic air travel is a routinely miserable experience. Cash strapped airlines fly older planes packed to capacity. Flight crews and ground personal are woefully under staffed and subject to intense pressure to adhere to increasingly strict deadlines. Passengers do not help the situation. Many people try to carry on inappropriately large luggage and slow down the tedious boarding process. Tension is the norm as is rude behavior on the part of passengers and employees. Into this mix enters a person that uses a wheelchair and the result is increased misery. When my fellow passengers see me and my wheelchair some openly groan, become angry, annoyed, or worried their flight will be delayed by my presence. In short, they are worried about themselves and their schedule. Airline personnel have a similar reaction: they do not perceive me as a human being and paying customer but extra work that could theoretically delay a flight and get them in trouble. As a seasoned traveler, I do my best to assert my rights as outlined in the Air Carrier Access Act passed in 1990 in a polite and dignified manner. I try to keep my wits about me knowing travel was much harder and in some cases impossible before the law was on my side. In addition I remind myself the commercial airline industry has a long history of actively and aggressively discriminating against passengers with disabilities. These sorts of thoughts keep me calm when confronted with airline employees that are obstructive, unhelpful, and demeaning.
When I travel by plane I know I am entering a hostile environment. When I leave for the airport I feel as though I am getting ready for battle. I know, however, that the battle is one that I will win. Sure I may be treated poorly but I know I will be able to get from point A to point B. The Department of Transportation and the Air Carrier Access insures I will be able to get on and off a plane and navigate the airline terminal. None of this will be easy but it gets done. The fact is the ACA prohibits discrimination on the basis of disability in air travel. All air carriers are required by law to accommodate the needs of passengers with disabilities. For instance, carriers cannot refuse to transport people on the basis of a disability assuming they do not present a flight safety risk. If a carrier believes a person with a disability represents such a risk they must provide a written explanation. Airlines cannot require advance notice that a person with a disability is traveling (they can require 48 hours notice if a passenger needs a respirator hook up). Carriers cannot limit the number of passengers with a disability. Carriers cannot require a person with a disability to travel with an attendant. These are the highlights of a complex and poorly understood law, one that is not followed in my opinion by airlines. In spite of its flaws, I consider the law essential to my right to fly. I am however worried. In Europe discount airlines have come up with a creative way to discriminate against people with disabilities. Here I refer to those that travel with power wheelchairs.
For those unfamiliar with power wheelchairs, these wheelchairs can be beasts as in they are very heavy. They are also astronomically expensive, in many cases custom designed for the user and as a result singularly unusual. A replacement chair could take many months to manufacture. These wheelchairs are complex pieces of technology that make an independent life possible for a person with a disability. They are not designed to be taken apart and put back together again. Yet this is exactly what some discount European airlines such as Easy Jet expect passengers to do. European discount airlines are using a trick as old as the hills to discriminate against people with disabilities that use power wheelchairs: health and safety. This is an instant red flag in the history of disability discrimination--once people start talking about health and safety people with a disability are screwed. Whose safety is Easy Jet trying to protect? I love this new twist--not the passengers with a disability but baggage handlers. According to Easy Jet no power wheelchair above 60kg can be accommodated unless it breaks up into pieces that weight less than 60kg. Some power wheelchairs can weigh twice as much. No power wheelchair I am aware of is designed to be broken down into separate pieces. Hence Easy Jet has targeted a specific population of people, those that use power wheelchairs, and are actively trying to keep them from flying. People with disabilities that use power wheelchairs have been denied boarding by Easy Jet. This worries me--will other European airlines follow Easy Jet's lead? To date, big carriers such as British Airways and Virgin have no weight restrictions for power wheelchairs. Yet I cannot help but wonder will some discount American based airline try to enact similar policies Easy Jet has enacted? Given the discriminatory history of American based carriers against people with disabilities it would not surprise me.
When I travel by plane I know I am entering a hostile environment. When I leave for the airport I feel as though I am getting ready for battle. I know, however, that the battle is one that I will win. Sure I may be treated poorly but I know I will be able to get from point A to point B. The Department of Transportation and the Air Carrier Access insures I will be able to get on and off a plane and navigate the airline terminal. None of this will be easy but it gets done. The fact is the ACA prohibits discrimination on the basis of disability in air travel. All air carriers are required by law to accommodate the needs of passengers with disabilities. For instance, carriers cannot refuse to transport people on the basis of a disability assuming they do not present a flight safety risk. If a carrier believes a person with a disability represents such a risk they must provide a written explanation. Airlines cannot require advance notice that a person with a disability is traveling (they can require 48 hours notice if a passenger needs a respirator hook up). Carriers cannot limit the number of passengers with a disability. Carriers cannot require a person with a disability to travel with an attendant. These are the highlights of a complex and poorly understood law, one that is not followed in my opinion by airlines. In spite of its flaws, I consider the law essential to my right to fly. I am however worried. In Europe discount airlines have come up with a creative way to discriminate against people with disabilities. Here I refer to those that travel with power wheelchairs.
For those unfamiliar with power wheelchairs, these wheelchairs can be beasts as in they are very heavy. They are also astronomically expensive, in many cases custom designed for the user and as a result singularly unusual. A replacement chair could take many months to manufacture. These wheelchairs are complex pieces of technology that make an independent life possible for a person with a disability. They are not designed to be taken apart and put back together again. Yet this is exactly what some discount European airlines such as Easy Jet expect passengers to do. European discount airlines are using a trick as old as the hills to discriminate against people with disabilities that use power wheelchairs: health and safety. This is an instant red flag in the history of disability discrimination--once people start talking about health and safety people with a disability are screwed. Whose safety is Easy Jet trying to protect? I love this new twist--not the passengers with a disability but baggage handlers. According to Easy Jet no power wheelchair above 60kg can be accommodated unless it breaks up into pieces that weight less than 60kg. Some power wheelchairs can weigh twice as much. No power wheelchair I am aware of is designed to be broken down into separate pieces. Hence Easy Jet has targeted a specific population of people, those that use power wheelchairs, and are actively trying to keep them from flying. People with disabilities that use power wheelchairs have been denied boarding by Easy Jet. This worries me--will other European airlines follow Easy Jet's lead? To date, big carriers such as British Airways and Virgin have no weight restrictions for power wheelchairs. Yet I cannot help but wonder will some discount American based airline try to enact similar policies Easy Jet has enacted? Given the discriminatory history of American based carriers against people with disabilities it would not surprise me.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Thursday, August 26, 2010
An Image Problem: the ADA and Business
In recent weeks I have read quite a few articles about the ADA that can only be deemed harmful. By harmful, I mean they are poorly researched, grossly wrong and anti ADA. The articles in question have appeared in mainstream newspapers and magazines that reach a national audience. I need not identify the articles in question as the larger issue that emerges from them as a collective is straight-forward: the ADA is bad and hurts large and small businesses. While the intent of the law is good, inclusion as a sort of philanthropic generosity, some pesky and cripples are using the ADA to line their own pockets with money via lawsuits. One article I read went as far as to suggest the ADA has done more harm than good. What makes these articles so dangerous is there is an ounce of truth as opposed to a pound of bull shit.
Let me set some facts clear: the ADA was a hopelessly compromised piece of legislation when it was passed into law. The Supreme Court spent more than a decade reducing its effectiveness and hopelessly confusing the general public as to who was and was not disabled. In spite of its profound flaws, the ADA and disability rights leaders have used the law to the best of their ability. But disability rights leaders are far from a united front--indeed I would contend they are hopelessly splintered. Worse yet the ADA has not in any way dramatically changed how Americans perceives disability in general or people with disabilities in particular. Discrimination is as rampant today as it was the day the ADA was passed. What has changed is the sort of discrimination people with disabilities encounter. Today there is a willful ignorance as it relates to disability rights. The average person unfamiliar with disability does not think of disability as being about civil rights and even if this thought crossed their mind there is the hazy knowledge a law was passed a long time ago that solved the problem.
When the ADA was passed hysterical claims about costs involved in making businesses accessible abounded. These fears turned out to be just that--baseless fears. No data past or present indicates the ADA is costly or hurts business large or small. In spite of this fact mainstream media outlets highlight stories that indicate otherwise. These stories abound. Look at any newspaper and one can read about business owner that "fear the ADA". Some businesses and cities "could be devastated" by the law. In short, the ADA is equated with financial ruin. This places the person with a disability willing to file a complaint under the ADA as the bad guy from the start. What is conveniently ignored is the ADA is very clear about what accessibility entails. The law in my experience is often ignored and business owners are content with slapping up a blue wheelchair logo and declaring themselves accessible. This is not reality. Reality is access is good not just for people with disabilities but countless others as well. Compliance is in the best interest of business owners. This line of reasoning never appears in press. In it place newspapers report about people with a disability who file multiple lawsuits in an effort to "shake down business owners." Lawyers of course are also profiting from this attack on business. Are some suits frivolous? Of course. However, every day I go out my door I come across businesses that are not accessible in spite of law. I park in parking lots that have curb cuts located in the wrong place or simply don't exist. I order cold cuts from delis that are in violation of the ADA each and every week. The fact is I could spend the rest of my life suing businesses over flagrant violations of the law. I do not do this because I perceive such an effort to be fruitless. What is needed is not a change in the law but the cultural demand for the law to be enforced. We need outrage, social outrage that all businesses and schools are not accessible. We need all people to demand the country be made accessible. I doubt I will ever see this take place but I can dream--and the ADA is but one measure of protection for my civil rights. It does not matter that the law is flawed for I know the law is on my side. This is not enough for real social change but at least it is a start.
Let me set some facts clear: the ADA was a hopelessly compromised piece of legislation when it was passed into law. The Supreme Court spent more than a decade reducing its effectiveness and hopelessly confusing the general public as to who was and was not disabled. In spite of its profound flaws, the ADA and disability rights leaders have used the law to the best of their ability. But disability rights leaders are far from a united front--indeed I would contend they are hopelessly splintered. Worse yet the ADA has not in any way dramatically changed how Americans perceives disability in general or people with disabilities in particular. Discrimination is as rampant today as it was the day the ADA was passed. What has changed is the sort of discrimination people with disabilities encounter. Today there is a willful ignorance as it relates to disability rights. The average person unfamiliar with disability does not think of disability as being about civil rights and even if this thought crossed their mind there is the hazy knowledge a law was passed a long time ago that solved the problem.
When the ADA was passed hysterical claims about costs involved in making businesses accessible abounded. These fears turned out to be just that--baseless fears. No data past or present indicates the ADA is costly or hurts business large or small. In spite of this fact mainstream media outlets highlight stories that indicate otherwise. These stories abound. Look at any newspaper and one can read about business owner that "fear the ADA". Some businesses and cities "could be devastated" by the law. In short, the ADA is equated with financial ruin. This places the person with a disability willing to file a complaint under the ADA as the bad guy from the start. What is conveniently ignored is the ADA is very clear about what accessibility entails. The law in my experience is often ignored and business owners are content with slapping up a blue wheelchair logo and declaring themselves accessible. This is not reality. Reality is access is good not just for people with disabilities but countless others as well. Compliance is in the best interest of business owners. This line of reasoning never appears in press. In it place newspapers report about people with a disability who file multiple lawsuits in an effort to "shake down business owners." Lawyers of course are also profiting from this attack on business. Are some suits frivolous? Of course. However, every day I go out my door I come across businesses that are not accessible in spite of law. I park in parking lots that have curb cuts located in the wrong place or simply don't exist. I order cold cuts from delis that are in violation of the ADA each and every week. The fact is I could spend the rest of my life suing businesses over flagrant violations of the law. I do not do this because I perceive such an effort to be fruitless. What is needed is not a change in the law but the cultural demand for the law to be enforced. We need outrage, social outrage that all businesses and schools are not accessible. We need all people to demand the country be made accessible. I doubt I will ever see this take place but I can dream--and the ADA is but one measure of protection for my civil rights. It does not matter that the law is flawed for I know the law is on my side. This is not enough for real social change but at least it is a start.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, August 18, 2010
Peter Singer: Moral Iconoclast or Just Dangerous
I try to refrain from writing about Peter Singer. Those familiar with the health care debate, bioethics, Euthanasia, and animal rights will know his work. Singer is currently at Princeton University in the Center for Human Values. I was shocked when Princeton hired Singer. I knew of his work, controversial views and thought he was not a good match for Princeton, a notoriously stuffy institution. But in retrospect I was wrong--the philosophy department at Princeton was top notch and Singer would regularly put the university in the headlines. Princeton, I thought, was in a win win situation--it hired a renown scholar who was respected by his peers in philosophy and would be in the headlines. Afterall, some think he is the most outstanding contemporary philosophical mind in the world while others, myself included, think he is simply dangerous. I base my concern on a thorough understanding of the Singer's work. He is a productive, first rate scholar and from what I understand a true gentleman. This does not mean I like his work. Quite the contrary, I take exception to much of what he believes, especially as it relates to Euthanasia. Singer, like most scholars, does not like to be critiqued. In reply to those that have the nerve to critique him he often replies that his words are taken out of context. I will not let that happen. Below is a complete transcript of what Singer recently said in a short video clip posted at bigthink.com. I could not bring myself to embed the video itself such is my dislike for the man. The video clip is entitled "The Case for Allowing Euthanasia of Severely Handicapped Infants". Here is Singer's answer to one question:
"Question: Why do you think we should be allowed to euthanize sick babies?
Peter Singer: Let me start with why I got interested in writing about it, I was directing a bioethics center in Australia and we were contacted by doctors who had ethical dilemmas, they were working in neonatal intensive care units, intensive care units for very small children and they have conditions, for example, Spina Bifida in which in their view, it was not really a good thing for these babies to survive. The babies, if they did survive would need multiple operations, would be severely disabled in various ways. And often the parents also thought, given the description of the condition, it was not going to be a good thing for the baby to survive.
So these babies were essentially being not treated. And the result of being not treated was that almost all of them died before they were 6 months old. Some of them died in the first week or 2, some of them in the first month or 2 and other gradually throughout that first 6 months.
And this was a very draining experience for the parents, the doctors, the nurses, you had this small babies in the hospital, but not being treated in order to make them live, but nevertheless, living for quite a long time.
And the doctor said, “Are we doing the right thing here? Is this justifiable?” S we, my colleague, Helga Kuhse and I, looked at it and we decided that yes, it’s a reasonable decision for the parents and doctors to make that it was better that infants with this condition should not live, basically the more severe variance of this condition should not live. But we couldn’t defend the idea that the right thing to do then was to let them die, this seems slow and painful and as I said, terribly emotionally draining on their parents and others.
So, we said, “Look, the difficult decision is whether you want this infant to live or not. That should be a decision for the parents and doctors to make on the basis of the fullest possible information about what the condition is. But once you’ve made that decision, it should be permissible to make sure that baby dies swiftly and humanely. If that’s your decision, if your decision is that it’s better that the child should not live. It should be possible to ensure that the child dies swiftly and humanely.”
And so that’s what we proposed.
Now, that’s been picked up by a variety of opponents, both pro-life movement people and people in the militant disability movement, which incidentally didn’t really existed the time we first wrote about this issue. And they have taken us the stalking-horse, the boogeyman, if you like, because we’re up front in saying that we think this is how we should treat these infants.
I can understand to some extent why the pro-life movement takes us that way, but I think the disability movement ought to be just as upset about letting children die because they have a disability, and since that’s a very common practice in many hospitals, I’m not so sure why they’ve gone after us in particular rather than after the doctors who were actually doing it. Because I really don’t see the difference between letting the children the die, and making sure that their death comes swiftly and humanely."
Let's start with Spina Bifida, a condition that in the estimation of doctors, nurses, and parents "was not really a good thing for these babies to survive". The most severe form of Spina Bifida, Myelomeningocele, results in paralysis and life long urinary and bowel dysfunction. I will readily agree this is less than ideal but is it reason to end a child's life? I think not and the National Institute of Neurological Disorders and Strokes points out that most people with Spina Bifida "are of normal intelligence" whose physical problems range from severe to minor. Essentially doctors, nurses, and parents are deciding to end the life of a child who is cognitively intact. Again, why? Why end a child life who has Spina Bifida? According to Singer, to survive such a child would need "multiple operations, would be severely disabled in various ways". I do not have Spina Bifida. However, I did have a rare neurological condition that caused great pain and paralysis. I had dozens of spinal taps as a child, three massive spinal surgeries, and spent months on end in the hospital. This was in the late 1960s and 1970s when pediatric neurology was primitive at best. Yet no one suggested I should die. In fact, I am not be able to move well over half of my body, struggle to control my bowels and bladder but do not consider myself "severely disabled". Long ago when I characterized myself as such my mother hissed at me: "You can use your mind, the most important part of your body, consider yourself lucky". My mother was right and as a result I am alive. I have a family, a career and lead a happy life. If Singer were my parent I might be dead. This is a sobering thought.
As for Singer's opponents, he appears to have a particular dislike for "people in the militant disability movement". This I assume is a veiled reference to Not Dead Yet. Somehow Singer can overlook the pro-life movement, a truly militant movement with a history of violence whose extreme views are out of touch with much of mainstream American society but he has a special disdain for people in the disability rights. This I don't get. However I do have an idea: I suspect Singer's dislike for the people in the so called "militant disability movement" is tied to demonstrations that took place at Princeton when he was hired in 1999. Singer knew his hiring was not going to simply pass by without protest. But of the hundreds of protesters it seems that Not Dead Yet bothered him the most. Not Dead Yet protesters blocked doors, some chained themselves and their wheelchairs to buildings and were removed by police. Singer notes this made for front page headlines and good television. What Singer did not do is actually engage with Not Dead Yet or other people in the disability rights movement. Princeton and Singer considered such actions below them. Ironically when Singer did engage disability rights, notably with Harriett McBryde Johnson he got whipped badly. Here I refer to the NY Times Magazine article, "Unspeakable Conversations" Johnson published and reprinted in her memoir Too Late to Die Young.
I find it hard to believe a smart man like Singer, and he is undoubtedly smart, cannot understand disability rights. He wonders why "they've gone after us in particular rather than the doctors who are actually doing it". I can tell you why. Singer and those who share his views see nothing positive about disability. They adhere to a medical model of disability, reject disability as a positive identity, and fail to grasp the social implications of disability. Note the use of the word social--Singer firmly grasps the financial and economic aspects of disability. Like others, he thinks we are too costly to justify. Our existence is not feasible, the resources used to keep those of us with severe disabilities alive would go further and serve the greater good if spent on people without disabilities, preferably those that can make an economic contribution to society. In essence he is providing the theoretical justification for the actions of the doctors who are ending the life of people with a disability. To me, this makes him far more dangerous than any doctor however misguided they might be.
I will give Singer one sort of praise: he certainly gets people talking. I am not sure he gets them thinking however. I also have no doubt he has a huge ego. I was stunned to read a volume published in his honor--Peter Singer Fires Back edited by Jeffrey A. Schaler. The book was supposed to be Singer "under fire" from his critics and give him an opportunity to "fire back". This is a great idea whose execution was badly mangled. The success of such an approach rest upon a well balanced and mutually respectful exchange. This did not take place as Singer and his ideas were a sacred cow. Hyperbole abounded and I knew I was in trouble by page XXIV when the editor wrote "the level of vituperation Peter Singer has had to endure is not unlike what Socrates had to go through". Yikes, that is about as over the top as I can ever recall reading in a supposedly academic text. Only one entry really stuck out--and that was by Steve Drake, research analyst for Not Dead Yet. The two men do not like one another nor do they respect one another. This made for interesting fireworks but not much more. This is unfortunate but expected when it comes to Singer. He does not honestly engage critics and disability rights is one such field he rejects out right, with little or no serious consideration. I wish this were not the case. Singer like many others could learn a lot about disability rights--even from militants like me and Not Dead Yet. All it takes is an open mind.
"Question: Why do you think we should be allowed to euthanize sick babies?
Peter Singer: Let me start with why I got interested in writing about it, I was directing a bioethics center in Australia and we were contacted by doctors who had ethical dilemmas, they were working in neonatal intensive care units, intensive care units for very small children and they have conditions, for example, Spina Bifida in which in their view, it was not really a good thing for these babies to survive. The babies, if they did survive would need multiple operations, would be severely disabled in various ways. And often the parents also thought, given the description of the condition, it was not going to be a good thing for the baby to survive.
So these babies were essentially being not treated. And the result of being not treated was that almost all of them died before they were 6 months old. Some of them died in the first week or 2, some of them in the first month or 2 and other gradually throughout that first 6 months.
And this was a very draining experience for the parents, the doctors, the nurses, you had this small babies in the hospital, but not being treated in order to make them live, but nevertheless, living for quite a long time.
And the doctor said, “Are we doing the right thing here? Is this justifiable?” S we, my colleague, Helga Kuhse and I, looked at it and we decided that yes, it’s a reasonable decision for the parents and doctors to make that it was better that infants with this condition should not live, basically the more severe variance of this condition should not live. But we couldn’t defend the idea that the right thing to do then was to let them die, this seems slow and painful and as I said, terribly emotionally draining on their parents and others.
So, we said, “Look, the difficult decision is whether you want this infant to live or not. That should be a decision for the parents and doctors to make on the basis of the fullest possible information about what the condition is. But once you’ve made that decision, it should be permissible to make sure that baby dies swiftly and humanely. If that’s your decision, if your decision is that it’s better that the child should not live. It should be possible to ensure that the child dies swiftly and humanely.”
And so that’s what we proposed.
Now, that’s been picked up by a variety of opponents, both pro-life movement people and people in the militant disability movement, which incidentally didn’t really existed the time we first wrote about this issue. And they have taken us the stalking-horse, the boogeyman, if you like, because we’re up front in saying that we think this is how we should treat these infants.
I can understand to some extent why the pro-life movement takes us that way, but I think the disability movement ought to be just as upset about letting children die because they have a disability, and since that’s a very common practice in many hospitals, I’m not so sure why they’ve gone after us in particular rather than after the doctors who were actually doing it. Because I really don’t see the difference between letting the children the die, and making sure that their death comes swiftly and humanely."
Let's start with Spina Bifida, a condition that in the estimation of doctors, nurses, and parents "was not really a good thing for these babies to survive". The most severe form of Spina Bifida, Myelomeningocele, results in paralysis and life long urinary and bowel dysfunction. I will readily agree this is less than ideal but is it reason to end a child's life? I think not and the National Institute of Neurological Disorders and Strokes points out that most people with Spina Bifida "are of normal intelligence" whose physical problems range from severe to minor. Essentially doctors, nurses, and parents are deciding to end the life of a child who is cognitively intact. Again, why? Why end a child life who has Spina Bifida? According to Singer, to survive such a child would need "multiple operations, would be severely disabled in various ways". I do not have Spina Bifida. However, I did have a rare neurological condition that caused great pain and paralysis. I had dozens of spinal taps as a child, three massive spinal surgeries, and spent months on end in the hospital. This was in the late 1960s and 1970s when pediatric neurology was primitive at best. Yet no one suggested I should die. In fact, I am not be able to move well over half of my body, struggle to control my bowels and bladder but do not consider myself "severely disabled". Long ago when I characterized myself as such my mother hissed at me: "You can use your mind, the most important part of your body, consider yourself lucky". My mother was right and as a result I am alive. I have a family, a career and lead a happy life. If Singer were my parent I might be dead. This is a sobering thought.
As for Singer's opponents, he appears to have a particular dislike for "people in the militant disability movement". This I assume is a veiled reference to Not Dead Yet. Somehow Singer can overlook the pro-life movement, a truly militant movement with a history of violence whose extreme views are out of touch with much of mainstream American society but he has a special disdain for people in the disability rights. This I don't get. However I do have an idea: I suspect Singer's dislike for the people in the so called "militant disability movement" is tied to demonstrations that took place at Princeton when he was hired in 1999. Singer knew his hiring was not going to simply pass by without protest. But of the hundreds of protesters it seems that Not Dead Yet bothered him the most. Not Dead Yet protesters blocked doors, some chained themselves and their wheelchairs to buildings and were removed by police. Singer notes this made for front page headlines and good television. What Singer did not do is actually engage with Not Dead Yet or other people in the disability rights movement. Princeton and Singer considered such actions below them. Ironically when Singer did engage disability rights, notably with Harriett McBryde Johnson he got whipped badly. Here I refer to the NY Times Magazine article, "Unspeakable Conversations" Johnson published and reprinted in her memoir Too Late to Die Young.
I find it hard to believe a smart man like Singer, and he is undoubtedly smart, cannot understand disability rights. He wonders why "they've gone after us in particular rather than the doctors who are actually doing it". I can tell you why. Singer and those who share his views see nothing positive about disability. They adhere to a medical model of disability, reject disability as a positive identity, and fail to grasp the social implications of disability. Note the use of the word social--Singer firmly grasps the financial and economic aspects of disability. Like others, he thinks we are too costly to justify. Our existence is not feasible, the resources used to keep those of us with severe disabilities alive would go further and serve the greater good if spent on people without disabilities, preferably those that can make an economic contribution to society. In essence he is providing the theoretical justification for the actions of the doctors who are ending the life of people with a disability. To me, this makes him far more dangerous than any doctor however misguided they might be.
I will give Singer one sort of praise: he certainly gets people talking. I am not sure he gets them thinking however. I also have no doubt he has a huge ego. I was stunned to read a volume published in his honor--Peter Singer Fires Back edited by Jeffrey A. Schaler. The book was supposed to be Singer "under fire" from his critics and give him an opportunity to "fire back". This is a great idea whose execution was badly mangled. The success of such an approach rest upon a well balanced and mutually respectful exchange. This did not take place as Singer and his ideas were a sacred cow. Hyperbole abounded and I knew I was in trouble by page XXIV when the editor wrote "the level of vituperation Peter Singer has had to endure is not unlike what Socrates had to go through". Yikes, that is about as over the top as I can ever recall reading in a supposedly academic text. Only one entry really stuck out--and that was by Steve Drake, research analyst for Not Dead Yet. The two men do not like one another nor do they respect one another. This made for interesting fireworks but not much more. This is unfortunate but expected when it comes to Singer. He does not honestly engage critics and disability rights is one such field he rejects out right, with little or no serious consideration. I wish this were not the case. Singer like many others could learn a lot about disability rights--even from militants like me and Not Dead Yet. All it takes is an open mind.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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