Readers that have followed this blog for a while know that I continue to keep up to date on the Ashley Treatment. I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media's pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled "Ashley Revisited: A Response to Critics" by Douglas Diekema and Norman Fost.
Let me be clear: the essay by Diekema and Fost is dreadful--unworthy of publication in any respected academic journal. I have submitted an abstract for an Open Peer Commentary in AJOB that is ever so polite. I gritted my teeth when submitting the abstract but doubt I will be asked to submit a commentary between 500 and 1500 words. My words here will not be nice or polite. For I know the pesky words of this and any other bad cripple are surely unwanted. The supposed aim of Diekema and Fost was to catalogue critical commentary "for the purpose of evaluating them. In doing so, we hope to facilitate a substantive discussion on the issues raised by the Ashley case that goes beyond assertions, over simplifications, opinion and emotion." Diekema and Fost identify 25 objections and break them up into different groups. This sounds great but the results are less than satisfactory to say the least. The authors write like petulant children angry with their parents for sending them to bed without dessert. How dare people object to the Ashley Treatment! We listened to the pleas emanating from the lips of Ashley's loving parents and devised a treatment for her benefit. No critics have formulated an argument that will deter us from helping Ashley and other children like her. This intervention must proceed because we know this is the one and only answer. This sort of knowledge, so certain, so sure, is not possible and if assumed to be true down rights dangerous. If you doubt me think Eugenics in this country, an approach approved by none other than the Supreme Court.
I find the authors obvious outrage and approach to critics ironic in that they have assembled many different phrases from a host of publications that are devoid of substance. Any and all criticism is dismissed and is based on an emotional argument, rhetoric, distortion, confusion, or politics. Take your pick critics are wrong, wrong, wrong. This is not scholarship but rather an effort to silence the overwhelming number of people inside and outside of medicine that object to the Ashley Treatment. To accomplish this the authors have assembled a long list of objections that appear to be power point driven or a collection of notes. Slide one, objection one reduced to a single line. Four subsequent points are made in less than a page. If a graduate student submitted this sort of paper to me I would give it a failing grade or tell him/her to write a real paper.
Let me provide one specific example of where the authors went terribly wrong and are misleading. Before I do this I want to note that this example does not concern the authors dismissal of my article published in Counter Punch or the way they reduced what I argued to a single phrase. Under "Objection 19" the authors list "Disability rights activists disagree" with the interventions in the Ashley Case. They authors identify four flaws made by disability activists and dismiss any notion the Ashley Treatment as morally wrong. The authors think disability activists are driven by an ideological argument and that advocacy groups do not in any way represent the parents or best interests of Ashley. Moreover, such argument are made by people with physical or moderate cognitive disabilities and are totally different from Ashley. For some this may pass as reasoned analysis but scratch the surface and profound flaws emerge. The authors write "several disability rights groups" opposed the Ashley Treatment and list five examples. A quick look on line reveals that more than "several" groups opposed the Ashley Treatment. I quickly came up with a list of over 150 disability groups that opposed the Ashley Treatment. This list includes at least one group from every state in America, every Canadian province, and countries such as England, New Zealand, Austria, Australia, Belgium, China, Korea, Norway, Poland and the list goes on and on. Surely one of these groups not to mention the hundreds of people that wrote articles, blogs, and commentaries that were published from a "disability rights" perspective made one or two good points. In short, a disability perspective is dismissed out of hand and the bibliography contains a dearth of source material from such a viewpoint. This is not just faulty reasoning but terrible and misleading scholarship.
What I find most troubling about the article by Diekema and Fost is their arrogance. The paper in question may state they seek to engage the critics of the Ashley Treatment but reality as they present it is something entirely different. There is no willingness to acknowledge much less negotiate differences of opinion. The Ashley Treatment is a viable treatment option. No argument presented can sway the authors from their beliefs. The single minded determination they display is, I hope, out of the norm. It certainly does not reflect my experience with the medical establishment. I have found most doctors that propose controversial treatment options to be critically attuned to any and all objections. And this what strikes me as so unusual about the Ashley Treatment. Diekema and Fost are not willing to listen to any reasoned objection regardless of where it comes from. They are right and all critics are wrong. Life is not that absolute and certainly no medical treatment as controversial as the Ashley Treatment lends itself to a black and white view of the world.
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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Tuesday, October 6, 2009
The Ashley Treatment Yet Again
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Monday, October 5, 2009
People with a Disability as Tragic Victim
Over the weekend, October 4, 2009 to be precise, the New York Times had a long article in the health section about the safety of chop meat and by extension hamburgers. The story, "Trail of E. Coli Shows Flaws in Inspection of Ground Beef" by Michael Moss discussed what many already know: ground meat safety is no sure thing. E. Coli outbreaks occur with regularity (16 in the last three years) and what we know as ground beef is not simply chunks of meat run through a grinder. I for one do not eat hamburgers and only use ground beef when it is cooked for extended periods of time (think tomato sauce or chili). What was of interest to me about the story regarding meat safety was the picture and nine minute video that featured Stephanie Smith, a 22 year old dance instructor. In 2007 Ms. Smith ate a hamburger her mother cooked and got a severe form of E. Coli. Ms. Smith was in a coma for weeks and almost died. The NYT dramatizes Ms. Smith's experience and uses her as a worst case scenario. While the text is bad and filled with lines such as "The affliction had ravaged her nervous system and left her paralyzed", the accompanying video is far worse. The video, provocatively titled, "The Burger that Shattered Her Life", makes it clear life with a disability is the worst possible fate. People must not only fear hamburgers but fear disability even more. Of the eleven people tied to the E. Coli outbreak Ms. Smith was the most seriously affected.
The story of Ms. Smith's hamburger is used by the NYT to sensationalize the risks associated with eating ground beef. The video in question is offensive. I was stunned when I watched it over coffee Saturday morning and have waited two days before writing a word because I was so outraged. The video begins with melodramatic music and Ms. Smith speaking. The voice over states she ate a home cooked burger and ten days later was in the hospital. She "emerged nine weeks later paralyzed and brain damaged". With soaring music, images of a dancer and Ms. Smith at the super market the message sent is unmistakable: poor Ms. Smith, her life is ruined by eating a hamburger. Sitting in a wheelchair she is depicted as an object of pity. The photos of her are shot from a low angle and depict her in a grocery aisle and at the check out center with only her head visible. The imagery is purposeful and intended to dehumanize. With this introduction over, most of the video focus on the lack of meat safety and Ms. Smith is used as a bookend for the video (she appears at the beginning and end of the video). When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction--pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: "I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing". Oh, please spare me the melodrama! Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states "She will most likely spend the rest of her life in a wheelchair according to her doctors". What the voice over is really saying is that Ms. Smith's life is ruined. Using a wheelchair is a fate worse than death. The video cuts back to Ms. Smith in tears. She states "I honest to God think they should be in jail". Pause while she composes herself. "So I hate them and I don't know how they can sleep at night. I ask myself every day, Why me? and Why from a hamburger? This is so unfair". More tears flow as the video ends.
I am outraged. What other person would be depicted in such a manner? Why, no one of course except a person with a disability. Like it or not I am still thought to be a second class citizens by many people including those at the NYT. There is a word for this--ableism. Yet when I use this word no one knows what it means. Most people have an idea of what Jim Crow Laws were thanks to the public school system and the civil rights movement. However, ableism is unknown in spite of the fact the ADA is almost 20 years old. Few people outside the disability community appreciate how damaging and dehumanizing videos such as the one discussed are. People just don't get it. Instead of being outraged I am too often thought to be over sensitive or politically correct. As Mary Johnson wrote in Make Them Go Away just because no one is out to get the handicapped does not make the bigotry we experience acceptable. I have no doubt the NYT did not mean to insult people with a disability. But that is exactly what they have done. Moreover, they have reinforced negatives stereotypes associated with being disabled that are as wrong as they are old. Thus when I go to the supermarket the person that read and viewed the story about Ms. Smith will have learned something: the safety of ground beef is questionable and my life and the life of all those who use a wheelchair is a quasi tragedy. I am not a sentient being but an object of pity. I am miserable and wonder every day why me, oh why oh why must I use my wheelchair. People do not see me for what I am, a human being with a life as rich and rewarding as any other person that gets through the day on two feet.
The story of Ms. Smith's hamburger is used by the NYT to sensationalize the risks associated with eating ground beef. The video in question is offensive. I was stunned when I watched it over coffee Saturday morning and have waited two days before writing a word because I was so outraged. The video begins with melodramatic music and Ms. Smith speaking. The voice over states she ate a home cooked burger and ten days later was in the hospital. She "emerged nine weeks later paralyzed and brain damaged". With soaring music, images of a dancer and Ms. Smith at the super market the message sent is unmistakable: poor Ms. Smith, her life is ruined by eating a hamburger. Sitting in a wheelchair she is depicted as an object of pity. The photos of her are shot from a low angle and depict her in a grocery aisle and at the check out center with only her head visible. The imagery is purposeful and intended to dehumanize. With this introduction over, most of the video focus on the lack of meat safety and Ms. Smith is used as a bookend for the video (she appears at the beginning and end of the video). When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction--pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: "I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing". Oh, please spare me the melodrama! Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states "She will most likely spend the rest of her life in a wheelchair according to her doctors". What the voice over is really saying is that Ms. Smith's life is ruined. Using a wheelchair is a fate worse than death. The video cuts back to Ms. Smith in tears. She states "I honest to God think they should be in jail". Pause while she composes herself. "So I hate them and I don't know how they can sleep at night. I ask myself every day, Why me? and Why from a hamburger? This is so unfair". More tears flow as the video ends.
I am outraged. What other person would be depicted in such a manner? Why, no one of course except a person with a disability. Like it or not I am still thought to be a second class citizens by many people including those at the NYT. There is a word for this--ableism. Yet when I use this word no one knows what it means. Most people have an idea of what Jim Crow Laws were thanks to the public school system and the civil rights movement. However, ableism is unknown in spite of the fact the ADA is almost 20 years old. Few people outside the disability community appreciate how damaging and dehumanizing videos such as the one discussed are. People just don't get it. Instead of being outraged I am too often thought to be over sensitive or politically correct. As Mary Johnson wrote in Make Them Go Away just because no one is out to get the handicapped does not make the bigotry we experience acceptable. I have no doubt the NYT did not mean to insult people with a disability. But that is exactly what they have done. Moreover, they have reinforced negatives stereotypes associated with being disabled that are as wrong as they are old. Thus when I go to the supermarket the person that read and viewed the story about Ms. Smith will have learned something: the safety of ground beef is questionable and my life and the life of all those who use a wheelchair is a quasi tragedy. I am not a sentient being but an object of pity. I am miserable and wonder every day why me, oh why oh why must I use my wheelchair. People do not see me for what I am, a human being with a life as rich and rewarding as any other person that gets through the day on two feet.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Tuesday, September 29, 2009
Assisted Suicide: That Did Not Take Long
The first legal test of the interim rules on assisted suicide in Britain has already come to light. An 83 year old former GP and assisted suicide advocate, Libby Wilson, was questioned and according to some reports arrested by the police. Dr. Wilson, the founder of FATE, Friends at the End, was questioned by the police in connection with the death of Cari Loder. Ms. Loder, a 48 year old academic, was not terminally ill. She had Multiple Sclerosis. Ms. Loder killed herself using helium gas and a hood she bought on line. According to Dr. Wilson she spoke with Ms. Loder twice and explained how to use the mask and gas she purchased. Loder was dead two days after they spoke and appears to have used a Final Exit suicide guide to end her life. Dr. Wilson was not the only person questioned by police who also spoke to one of Loder's neighbors. However, Dr. Wilson has been frank in stating her opinions about Loder's death. Wilson has been quoted as stating that she gave Loder "final tips" and that her questioning was an "appalling waste of money. The police time and effort to investigate the death of a lady who wanted to die and had good reason to die and I had absolutely nothing to do with the means of how she did it". Exactly why Loder had "good reason" to die is something I and many others would dispute.
This case does not surprise nor does the identity of the victim. Loder was a lecturer at London University's Institute of Education and discovered what was named the "Cari Loder Regime" for MS. This regime combined antidepressants, an amino acid and vitamins. Loder wrote Standing in Sunshine in 1997. In her book she wrote that she was diagnosed with MS at the age of 32 and was on the verge of committing suicide until she discovered the "Cari Loder Regime". It will be very interesting to see how and what Keir Starmer does in light of Loder's death. I sincerely doubt Dr. Wilson will face prosecution based on the interim guidelines thereby paving the way for many more deaths.
This case does not surprise nor does the identity of the victim. Loder was a lecturer at London University's Institute of Education and discovered what was named the "Cari Loder Regime" for MS. This regime combined antidepressants, an amino acid and vitamins. Loder wrote Standing in Sunshine in 1997. In her book she wrote that she was diagnosed with MS at the age of 32 and was on the verge of committing suicide until she discovered the "Cari Loder Regime". It will be very interesting to see how and what Keir Starmer does in light of Loder's death. I sincerely doubt Dr. Wilson will face prosecution based on the interim guidelines thereby paving the way for many more deaths.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Monday, September 28, 2009
Inclusion in Education at What Cost?
Access for people with a disabilities carries a cost. To me cost does not refer to money. Inclusion means equal access and equal rights as in civil rights. One of our most cherished rights is the right to an education. However, the right to a public school education was denied generations of people with a disability. The impact this denial had on the lives of people with a disability was profound and long lasting. We people with a disability have yet to recover from the legacy of exclusion. Without an education, employment was impossible for people with a disability. With no job, a social life and home of one's own was a pipe dream for many Americans with a disability. Today, schools districts across America trumpet inclusion--within reason. And what does "reason" mean? Inclusion is valued as long as it does not cost too much or there are not too many students with a disability present. I know this because I have heard parents and my professorial peers complain bitterly about how schools are "overrun with students with disabilities". Professors complain about the accommodations they are forced to make, particularly for students with learning disabilities who get extra time to take a test and "cannot write in English." Meanwhile parents in the public school complain about the cost involved in educating students with a disability and resent each and every accommodation. I have heard many parents ask why a bus with a lift is needed for a student that uses a wheelchair and suggest hiring a cab to take them to and from school daily would save money. No consideration is given to the legality of such a suggestion or the social stigma attached to arriving to school apart from one's peers.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.
The cost of inclusion has been on mind since the film, Including Samuel, has been subject of an intense media blitz. The film has been featured on Good Morning America, NPR's All Things Considered, and will be broadcast nationally on PBS. Including Samuel chronicles the life of four students with disabilities including Samuel, a fourth grader with cerebral palsy. Samuel parents make every effort to include Samuel, to make his life as routine as his peers without a disability where they reside in Concord, New Hampshire. What this film does well is reveal that all may support inclusion in theory but the reality children and adults with a disability experience is quite different. Moreover, there is a great deal of resentment in the larger community about the cost involved in providing an education for children with special needs. "Special needs" and the very idea of treating any American, especially a child, as though they are, well, special, is deeply resented. Such treatment goes against the American myth that all people are created equal. Special to Americans is akin to an advantage. I know such children and adults with disabilities are resented because I hear negative comments all the time. Professors often ask me "Why do they even let students with a learning disability into college?" At the local public school I have heard people complain at length about the cost of making a bathroom accessible. They wonder "why students with a disability just go to the nurses office if they need to use the rest room?" In each example "special" treatment is resented in terms of finances involved and accommodations made. This viewpoint is the norm and hence an indication of the great cost and legacy of decades of exclusion. For I have often heard parents remark that "We never had any kids with disabilities when I was a kid. Why can't they got to a special school and use the savings to expand the program for the gifted and talented or sparse athletic budget". This line of logic utterly ignores the law and those parents that fight for their child's right to an education are deemed difficult or worse. Students with a disability are stigmatized because at some level they are aware their presence is not only unwanted but costly. This message is delivered by teachers that do not want them present because a wheelchair for instance takes up too much valuable space in a classroom. Perhaps they are forced to go to the one and only accessible bathroom in say the nurses office which is in an out of the way location. Perhaps they are driven to school daily because the lift on the bus is broken and has not worked in months. Kids are not stupid, they have a sense for things and kids with a disability are acutely aware they are different. They are also aware of when their presence is a problem--like in gym when other kids are active but no adaptive activity is considered.
I know quite a bit about the implications of being unwanted. I went to Catholic school as a child and the nuns made sure that I, "one of God's special children", was treated differently. Thankfully my parents nipped this sort of talk in the bud, as in one day, and sent me to public school. Public school was not much easier as my peers ridiculed my existence and tortured me with taunts of "old ironsides" and "retard". But at least my teachers and school guidance counselor treated me as a sentient being and this what I remember the best. Yet I wonder what would happen to me if I were attending school today. I doubt I would get the same support. In theory and legally I would be supported but the day to day reality would be profoundly different. Would a present day guidance counselor support my right to an equal education or make me feel as though any accommodation was a problem. These are hard times economically, school budgets are being slashed and the people most adversely affected are students with disabilities. They are being adversely affected because their existence is unwanted and as such mirrors larger cultural traits of exclusion that persist. These thoughts depress me in larger part because it is so unnecessary. It is also against the law and that too is a problem--disability rights and civil rights are not connected in the minds of most Americans. If any thought is put into the issue, most assume the ADA solved the problem long ago. I know, as do most people with a disability, that the problem has not been solved. I assure you those little blue wheelchair signs all over the place are as useful as all the broken elevators and garbage laden wheelchair lifts I encounter. What really gets me is that people think that my wheelchair limits my options or affects my ability to think. The real limitations have nothing to do with a person's given physical disability but the education and opportunities denied them by society. This is a lesson many school districts have not yet learned.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Thursday, September 24, 2009
Governor Paterson's Honesty
I have been severely critical of David Paterson. My critiques are based on his many mistakes but one thing I have admired since he took office is his penchant for honesty. Honest or candid remarks are out of the norm for politicians and Paterson is not an ordinary Governor. When appointed Governor he quickly admitted to a history of drug use and extra marital affairs. His proactive approach caused some controversy but saved his job. In retrospect I cannot help but wonder if he regrets being appointed Governor and holding onto his job in those tenuous first weeks. I do know his career did not work as planned. In a luncheon this week Paterson stated that when he ran as lieutenant governor in 2006 along with Eliot Spitzer for governor he thought then Senator Hilary Clinton would win her efforts to become President. When this happened Paterson thought Governor Spitzer would appoint him to Clinton's vacated senate seat. In Paterson's own words he said "I did not sign up for this. I wanted to be lieutenant governor. I had this grand plan that Hilary Clinton was going to become president. Maybe the governor would appoint me to the senate".
Paterson's candid remarks are of interest because politicians rarely if ever publicly admit to such grand ambitions. It is also interesting to note Paterson's comments were made shortly after it was revealed the Obama administration supposedly does not want him to run for election in 2010. This must be a bitter pill for Paterson to swallow and he stated that he had "never heard of a president asking a sitting governor not to run. I thought it was very unusual and very unfair". Welcome to big time politics Mr. Paterson. While I may not like Paterson's actions since he assumed office, he was could not have come to power at a worse time. In my estimation virtually all of his problems do not stem from his mistakes but rather from a dismal economy and being forced to make exceedingly unpopular budget cuts. Paterson is smart enough to realize this. He stated "If you ever wanted to know the plan or course you could take to become unpopular, be governor of this state starting March 17, 2008. No matter who you are, I guarantee you, no one will like you". These too are exceedingly honest remarks and all too true. I amy not like Paterson's decisions but I do respect his honesty. How often to you get to write that about a politician?
Paterson's candid remarks are of interest because politicians rarely if ever publicly admit to such grand ambitions. It is also interesting to note Paterson's comments were made shortly after it was revealed the Obama administration supposedly does not want him to run for election in 2010. This must be a bitter pill for Paterson to swallow and he stated that he had "never heard of a president asking a sitting governor not to run. I thought it was very unusual and very unfair". Welcome to big time politics Mr. Paterson. While I may not like Paterson's actions since he assumed office, he was could not have come to power at a worse time. In my estimation virtually all of his problems do not stem from his mistakes but rather from a dismal economy and being forced to make exceedingly unpopular budget cuts. Paterson is smart enough to realize this. He stated "If you ever wanted to know the plan or course you could take to become unpopular, be governor of this state starting March 17, 2008. No matter who you are, I guarantee you, no one will like you". These too are exceedingly honest remarks and all too true. I amy not like Paterson's decisions but I do respect his honesty. How often to you get to write that about a politician?
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, September 23, 2009
Starmer's Interim Guidelines a Slam Dunk for Assisted Suicide
I knew the guidelines released by Keir Starmer would be a victory for advocates of assisted suicide but I had no idea just how lopsided they would be. The new guidelines that go into force today may only be interim guidelines and are subject to debate before a final version is issued next year. However, don't let this technicality fool you nor be swayed by misleading statements by Keir Starmer who maintains "Assisted suicide has been a criminal offense for nearly 50 years and my interim policy does nothing to change that". Mr. Starmer is correct, assisted suicide is still against the law in Britain but if one actually commits this crime the odds of being prosecuted are non existent. Again, don't be misled by statement such as this: "There are no guarantees against prosecution and it is my job to ensure that the most vulnerable people are protected while at the same time giving enough information to those people like Mrs. Purdy who want to be able to make informed decisions about what actions they may choose". What a relief, Starmer is concerned about protecting the most vulnerable. Well, to all those vulnerable people out there I have a word of advise: watch out because your relatives and loved ones can kill you without fear of prosecution. In the words of Starmer: "We are proud of the way we temper justice with mercy. The decision not to prosecute provides essential flexibility to prosecutors ... the critical question I have considered is: what are the circumstances in which it is or is not in the public interest to prosecute a person against whom there is enough evidence to support the criminal offence of assisted suicide?"
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
The above begs the question who can commit suicide with assistance? People that assisted a suicide not likely to face charges include the following:
A victim that had a clear, settled and informed desire to commit suicide whose views were unequivocal.
A victim had a terminal illness, a severe and incurable physical disability or severe degenerative condition from which there was no possibility of recovery.
The victim had long-term care based needs with a wife, husband, partner, close relative or personal friend.
The victim was given minor assistance or influence.
Under these guidelines anyone in my family can "help" me die. I do indeed have a severe disability and there is no hope my paralysis will ever be cured. Thus the guidelines will permit my family to use Starmer's words act with "compassion". Compassion! My idea of compassion does not include assisted suicide. My idea of compassion does not include assisting people with "severe and incurable" disabilities kill themselves. My idea of compassion does not include hastening the death of those with severe degenerative conditions. My idea of compassion does not include killing those who are terminally ill. My idea of compassion does not include killing those I care for who may have a condition like Alzheimer's Disease. Starmer believes he is acting with compassion but I think his guidelines are inherently dangerous and grossly subjective. Rather than clarify the legality of assisted suicide he has opened the door for supposedly well meaning people to kill vulnerable people. And who comes to mind here? Daniel James' parents. Under Starmer's guidelines they would be considered compassionate people and free from prosecution. Given this, I am worried about a class of people that are not valued--people with a host of different disabilities. People like Debbie Purdy. People like me. People that experience a life altering disability. What will become of these people in a country that has instituted guidelines where assisted suicide is illegal but no one is prosecuted? Let me provide one example in which those that may mean well will in fact encourage another human being to needlessly end their life. Imagine this scenario: a young man has been in a car accident. He is from a working class background with little education and modest goals. He is an avid soccer player and self professed ladies man. He is told by his doctor that his spinal cord has been severed. He is paralyzed from the 8th cervical level down. He will never walk again, has no sensation throughout his body, and he has limited use of his hands. Sex is no longer possible. He will be "wheelchair bound", unable to transfer independently and be dependent upon personal care attendants for the rest of his life. He will be sent to a rehabilitation hospital when medically stable. Given the harsh reality described in an overwhelming negative fashion, this young man might decide life is not worth living. His family, like Daniel James' parents, may agree and help him end his life. No person will be prosecuted and no crime will have been committed. To me this is not compassion but a legal form of murder.
I know a good bit about compassion and vulnerability. I learned about this the hard way--I was vulnerable, i.e. morbidly sick as a child, and my parents showed great compassion caring for me. I learned some very hard lessons at a young age and was taught to never doubt my self worth or ability. I vividly recall when I was told I could not walk again my parents cried with me and whenever I started to doubt myself they would hiss with a vengeance: "Your legs may not work but the most important part of your body is perfectly intact, your brain, and you better start using it." The compassion and belief they showed in me was a force unto itself at a time when I was most vulnerable. Overtime I found my groove, realized that my disability was more of a social problem than an individual impediment to what I valued and wanted to achieve in life. Fast forward 30 years and I am a tax payer, father, teacher, writer, and lead a life that is as rich and rewarding as my neighbors all of whom walk. I will never forget how lucky I am because at the most vulnerable point in life received nothing more and nothing less than total support from my parents. In retrospect I know I could have been seduced via a perverse form of compassion to end my life. I could have been like Daniel James, dead within a year of my injury. This is exactly why the Daniel James case is so disturbing and why the guidelines set forth today by Starmer are down right dangerous. I have no doubt the elderly, terminally ill, or those with a severe disability will be encouraged to die. This will not be done with malicious intent but the end result will be death, needless death. Of course the words used will be spoken with the utmost compassion that I sincerely hope will never emerge from the mouths of those that love me.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Tuesday, September 22, 2009
Keir Starmer's Expected Chilling Clarity
I doubt more than a handful of Americans know who Keir Starmer is. In fact, I doubt a large number of British citizens know who Keir Starmer is. Don't let this lack of knowledge seduce you into thinking Starmer is not an important or powerful man. Starmer is in fact an extremely powerful public figure in Britain. Since last November Starmer has been the director of public prosecutions and thus head of the Crown Prosecution Service. This week Starmer will unveil guidelines on assisted suicide prompted by a string of very public cases. Foremost among these are Debbie Purdy, a woman who has MS and has expressed her strong desire to commit suicide. Ms. Purdy wants to know if her husband will be prosecuted if he assists her suicide. The other well known case is one I have already written about and concerns Daniel James. Last year James, a 23 year old man who experienced a spinal cord injury, with the help of his parents committed suicide. Starmer decide not to prosecute James' parents and at the time stated "This is a tragic case, involving as it does, the death of a young man in difficult and unique circumstances. The CPS had ample evidence to charge James's parents under the Suicide Act which states that it is a criminal offense to aid, counsel, or procure the suicide of another". Starmer did not minimize the seriousness of the offense but maintained Daniel James' desire to end his own life was not influenced by his parents. Starmer also believed if James's parents were convicted they would have received nothing more than a slap on the wrist.
The debate over assisted suicide since Daniel James ended his own life with his parents help has simmered without stop in Britain. I have followed this debate from afar as its implications extend well beyond the borders of Britain and are directly relevant to people with disabilities. This connection is obvious to me but a little background is needed. Debbie Purdy referred to above convinced the court in July of this year to direct Starmer as head of the Crown Protection Service to produce a policy statement on whether people who help someone kill themselves will be prosecuted. This policy is set to be issued Wednesday and is designed to clarify when individuals are most likely to be prosecuted when aiding someone to end their life. Although Starmer has been coy with the press prior to the release of the policy statement, he has told BBC News that "the general approach we've taken is to steer a careful course between protecting the vulnerable from those that might gain from hastening their death but also identifying those cases where nobody really thinks it's in the public interest to prosecute." What Starmer is really saying is that he does not want nor has he expressed any desire to prosecute people like Daniel James' parents. Thus do not get confused by Debbie Purdy story and the headlines of the last year. Purdy is of secondary importance, a means to an end for those pushing to make assisted suicide legal. The real issue, the test case, concerns Starmer's decision in 2008 not to prosecute Daniel James' parents.
The guidelines that will be released by Starmer on Wednesday are not merely of theoretical interest. In Starmer's estimation he is seeking to bring clarity to many people in Britain who are interested in ending their life. Undoubtedly the fact Daniel James and well over 100 others have gone to the Swiss suicide center Dignitas to die prompted this need for clarity. Let me be clear: Starmer's policy does not concern people who are terminally ill. Starmer's policy guidelines concern all people and I suspect will pave the way for people like Debbie Purdy to end their life without fear family members will be prosecuted for any and all assistance. This is why Daniel James is so important--his death has provided the much needed precedent and time for Starmer to clarify his thoughts. When Starmer decided not to prosecute James' parents he issued a lengthy explanation of his decision. That decision will have sweeping implications because it no longer concerns one young man who is paralyzed or those that express an interest in going to Dignitas. In an interview with the Guardian Starmer has stated that "The one thing I hope I have made clear is that this policy will cover assisted suicide wherever it takes place including England and Wales. It shouldn't be something that covers those that go to Switzerland and not those who can't afford to do so." To me this sounds like an endorsement of assisted suicide. Starmer is not changing the law but it seems crystal clear that any compassionate partner, loved one, or family member can end the life of someone who wants to die. This reinforces the public sentiment expressed about Daniel James' parents when news broke they took their son to Dignitas to die: they were loving parents in an impossible and singularly unique situation. They put their son's desires ahead of their own and selflessly helped him die. After all, who would want to live life paralyzed, "wheelchair bound" and in their estimation a "second class citizen". Starmer has been quoted that the police interviews with Daniel James' parents "would make you weep." What I want to know is what are James' parents and Starmer weeping about? Did they cry about James life as a second class citizen and what that means to others in a similar situation? Did they weep because people with spinal cord injuries in Britain encounter stigma at every turn and are unemployed in larger numbers? Did they weep because Daniel James had no housing options other than moving back home with his parents or an institution? Did Starmer consider the larger implications involved in not prosecuting Daniel James' parents? These are hard questions to answer, one's that don't garner headlines or pull at the heart strings of people. These questions are important because people with a disability have been sent a message by Daniel James' parents and Starmer's decision not to prosecute. The message is as simple as it is deadly. The life of a person with a disability is not as valuable as a person without a disability. There are no ifs, ands, or buts involved here. The message is not subtle: the life of people with a severe disability is very hard and we understand this suffering. We are willing to help end your life and your loved one's will not be prosecuted. The logical corollary is that people with a disability will be expected to feel like, well, just like Daniel James did, a second class citizen. As such, people with a disability are a burden upon others and will be made to feel a perverse obligation to end their supposed suffering.
The deadly logic above conveniently ignores the fact people with a disability, if they suffer at all, are suppressed not by a given bodily deficit but by the social stigma attached to such a deficit. For instance, I think my wheelchair is a liberating device and consider my paralysis to an integral part of who I am as a human being. In contrast, others see my wheelchair as symbol of disability, weakness, and limited expectations. In short, my life is a tragedy. This faulty line of reasoning is not only infuriating but has far reaching implications that extend beyond disability. If Starmer is not going to prosecute those that help people end their life what will he do about people who are eager to push the boundaries of the new guidelines? What will Starmer do with a man like Michael Irwin who wants assisted suicide made legal and is willing to help anyone end their own life? Can Irwin help hundreds of people die assuming he does not profit from their deaths? And where does one draw a line between assistance and encouragement? For instance, will people in Daniel James' situation immediately following a spinal cord injury be told their options are life with paralysis or death? Will those options be explained in a balanced manner? Will a person that has no experience really be able to make an informed decision in such a situation? In asking these questions and many others in this post I keep returning to Daniel James. His death and the actions of his parents haunt me. No matter how depressed I was when initially paralyzed I never considered ending my life. In fact the hardest thing I have been forced to cope with as a person with a disability is the knowledge that others think my life is somehow less sweet and worthwhile because I use a wheelchair. I get this message loud and clear as did Daniel James and his parents. Thus significant obstacles remain common place and prevent people with a disability from leading a rich and rewarding life. Some people like Daniel James are even willing to end their life because they cannot confront the social and practical inequities associated with paralysis. Worse yet, his loving parents are lauded for their actions and one man in a position of power is going to use this case to pave the way for the deaths of many others, some with and some without a disability. Surely we humans are capable of much, much more.
The debate over assisted suicide since Daniel James ended his own life with his parents help has simmered without stop in Britain. I have followed this debate from afar as its implications extend well beyond the borders of Britain and are directly relevant to people with disabilities. This connection is obvious to me but a little background is needed. Debbie Purdy referred to above convinced the court in July of this year to direct Starmer as head of the Crown Protection Service to produce a policy statement on whether people who help someone kill themselves will be prosecuted. This policy is set to be issued Wednesday and is designed to clarify when individuals are most likely to be prosecuted when aiding someone to end their life. Although Starmer has been coy with the press prior to the release of the policy statement, he has told BBC News that "the general approach we've taken is to steer a careful course between protecting the vulnerable from those that might gain from hastening their death but also identifying those cases where nobody really thinks it's in the public interest to prosecute." What Starmer is really saying is that he does not want nor has he expressed any desire to prosecute people like Daniel James' parents. Thus do not get confused by Debbie Purdy story and the headlines of the last year. Purdy is of secondary importance, a means to an end for those pushing to make assisted suicide legal. The real issue, the test case, concerns Starmer's decision in 2008 not to prosecute Daniel James' parents.
The guidelines that will be released by Starmer on Wednesday are not merely of theoretical interest. In Starmer's estimation he is seeking to bring clarity to many people in Britain who are interested in ending their life. Undoubtedly the fact Daniel James and well over 100 others have gone to the Swiss suicide center Dignitas to die prompted this need for clarity. Let me be clear: Starmer's policy does not concern people who are terminally ill. Starmer's policy guidelines concern all people and I suspect will pave the way for people like Debbie Purdy to end their life without fear family members will be prosecuted for any and all assistance. This is why Daniel James is so important--his death has provided the much needed precedent and time for Starmer to clarify his thoughts. When Starmer decided not to prosecute James' parents he issued a lengthy explanation of his decision. That decision will have sweeping implications because it no longer concerns one young man who is paralyzed or those that express an interest in going to Dignitas. In an interview with the Guardian Starmer has stated that "The one thing I hope I have made clear is that this policy will cover assisted suicide wherever it takes place including England and Wales. It shouldn't be something that covers those that go to Switzerland and not those who can't afford to do so." To me this sounds like an endorsement of assisted suicide. Starmer is not changing the law but it seems crystal clear that any compassionate partner, loved one, or family member can end the life of someone who wants to die. This reinforces the public sentiment expressed about Daniel James' parents when news broke they took their son to Dignitas to die: they were loving parents in an impossible and singularly unique situation. They put their son's desires ahead of their own and selflessly helped him die. After all, who would want to live life paralyzed, "wheelchair bound" and in their estimation a "second class citizen". Starmer has been quoted that the police interviews with Daniel James' parents "would make you weep." What I want to know is what are James' parents and Starmer weeping about? Did they cry about James life as a second class citizen and what that means to others in a similar situation? Did they weep because people with spinal cord injuries in Britain encounter stigma at every turn and are unemployed in larger numbers? Did they weep because Daniel James had no housing options other than moving back home with his parents or an institution? Did Starmer consider the larger implications involved in not prosecuting Daniel James' parents? These are hard questions to answer, one's that don't garner headlines or pull at the heart strings of people. These questions are important because people with a disability have been sent a message by Daniel James' parents and Starmer's decision not to prosecute. The message is as simple as it is deadly. The life of a person with a disability is not as valuable as a person without a disability. There are no ifs, ands, or buts involved here. The message is not subtle: the life of people with a severe disability is very hard and we understand this suffering. We are willing to help end your life and your loved one's will not be prosecuted. The logical corollary is that people with a disability will be expected to feel like, well, just like Daniel James did, a second class citizen. As such, people with a disability are a burden upon others and will be made to feel a perverse obligation to end their supposed suffering.
The deadly logic above conveniently ignores the fact people with a disability, if they suffer at all, are suppressed not by a given bodily deficit but by the social stigma attached to such a deficit. For instance, I think my wheelchair is a liberating device and consider my paralysis to an integral part of who I am as a human being. In contrast, others see my wheelchair as symbol of disability, weakness, and limited expectations. In short, my life is a tragedy. This faulty line of reasoning is not only infuriating but has far reaching implications that extend beyond disability. If Starmer is not going to prosecute those that help people end their life what will he do about people who are eager to push the boundaries of the new guidelines? What will Starmer do with a man like Michael Irwin who wants assisted suicide made legal and is willing to help anyone end their own life? Can Irwin help hundreds of people die assuming he does not profit from their deaths? And where does one draw a line between assistance and encouragement? For instance, will people in Daniel James' situation immediately following a spinal cord injury be told their options are life with paralysis or death? Will those options be explained in a balanced manner? Will a person that has no experience really be able to make an informed decision in such a situation? In asking these questions and many others in this post I keep returning to Daniel James. His death and the actions of his parents haunt me. No matter how depressed I was when initially paralyzed I never considered ending my life. In fact the hardest thing I have been forced to cope with as a person with a disability is the knowledge that others think my life is somehow less sweet and worthwhile because I use a wheelchair. I get this message loud and clear as did Daniel James and his parents. Thus significant obstacles remain common place and prevent people with a disability from leading a rich and rewarding life. Some people like Daniel James are even willing to end their life because they cannot confront the social and practical inequities associated with paralysis. Worse yet, his loving parents are lauded for their actions and one man in a position of power is going to use this case to pave the way for the deaths of many others, some with and some without a disability. Surely we humans are capable of much, much more.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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