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.
Tuesday, September 29, 2009
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.
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?
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.
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.
Monday, September 21, 2009
David Paterson and the Price of Access
David Paterson is in the news again. No he did not stick his foot in his mouth, bring up the issue of race, change his facial hair, or talk about whether Obama wants him to run for re-election. The news is far more mundane. Governor Paterson signed 60 bills into law. I am not impressed with what he signed into law nor am I pleased with the 18 bills he vetoed. What did Paterson sign into law? Golly controversial laws that strengthen summer camp inspections and another that will allow residents to receive email updates when a sex offender moves into their neighborhood. Great, Peterson wants to keep children safe. That is a real vote getter. As to the laws Paterson vetoed one of the eighteen was of interest. The law of interest would have required each polling place in New York meet federal guidelines for physically disabled voters within the next six months. This too is not controversial. The ADA was signed into law almost 20 years ago and one would think all polling places would be accessible. Two decades seems like more than enough time to insure access is routine. But no, like the rest of America, access at polling places in New York is hit and miss. Why did Paterson veto this bill? As many have pointed out, this is an odd bill for a man with a disability to veto. Paterson has argued in vetoing 18 bills he will save the state of New York $28 million in the next two years. Paterson has argued the time frame of the vetoed legislation was "simply too onerous". Instead, he will work with local governments that have a federal waiver for access. I am not sure what this means. What will Paterson do in the next year that is any different than what has been done or not done in the past? Six months does not appear to be unreasonable or a burden in terms of making a polling place accessible. The federal guidelines are clear cut, have been in existence for a long time and surely all must agree access is a priority.
Please note the last few words of the above paragraph--read carefully--surely access is a priority. Yes, access is a priority. It always is subject of discussion and all agree it is the right thing to do. Many point out it is the law. Yet a funny thing always seems to happen between the drawing board meetings when one and all agree access is the right thing to do and when construction or renovation takes place. Access, once believed to be a requirement, becomes a problem at some point. Golly those pesky elevators and electric door openers sure do cost a lot of money. Do we really need every entrance to be accessible? Is it required to have an electric door opener at every entrance? And, wow, that ramp sure does take up a tremendous amount of space and is a real eye sore. Why can't people with a disability enter through the backdoor? We can give anyone who is disabled a "special key". The rationalizations are endless and signify that access is valued in theory but when it comes to budgeting is always the first line item cut. Deleting access is a great cost savings. Why have two accessible bathrooms when one will suffice. Well you need more than one bathroom because every constipated person in America gravitates to the one damn bathroom stall I can enter. Electric door openers are needed at the entrance to the library because people often have their hands full of books they are trying to take out or return. I know this because I often drop books when opening and closing library doors. And Governor Paterson when I vote I would like to vote in the town where I live. I hardly think this is much to ask. We do live in a Democracy! But no, I must send in an absentee ballot or vote in a nearby town that has an accessible polling place. Despite my complaint I am lucky. I have a car and getting to the next town is no problem. What about the members of the community that do not own a car? No mass transportation is available, two acre zoning is the norm where I live, and I am sure people do not vote because they do not have access to a polling place.
The skeptic in me would love to point out that it is in Paterson's best interest to insure all polling places are accessible. Paterson needs all the votes he can get as he faces an uphill battle for his re-election. Paterson however knows the disability community well. Too many of us do not vote and few politicians see us as a voting block--Paterson included. Here is the additional problem. Paterson has no connection to the disability community. If he did, he would not have vetoed the bill in question regardless of the cost or time frame. He should know you cannot place a price tag on one's civil rights and ability to access a polling place. When elected Paterson talked about the discrimination he encountered as a young man because he was blind. He overcame the needless obstacles that were placed in his way when trying to access an education. But I think he has forgotten where he came from. Like many successful politicians, he is insulated from reality and surrounded by handlers that control the ebb and flow of information. I sincerely doubt he is connected with others who are blind and is distant from the vibrant disability community. Perhaps he has always maintained this distance. I do not know the man but it is obvious he desperately wants to retain his position. Maybe I am not being fair as every politician is self centered. Moreover, Paterson was not elected to the governorship and perhaps he feels as though he has something to prove. Regardless, the bottom line is that he knows access is not valued and hence an easy item to cut. Given the dismal state of the economy, many such cuts are being made. However, this veto is dead wrong and sends a very bad message. Access is a "burden" and federal waivers are not only acceptable but Paterson is willing to let them remain. I may be all wrong and for a different take on Paterson please read Planet of the Blind today. Kuusisto has a post, "Why Governor Paterson Doesn't Get It", that I found thought provoking. We may have a different take on the matter but the important point is that the veto is as wrong as wrong can be. I hope Paterson realizes this and his veto was just a matter of politics. Yet sometimes a politician must go against the grain and this was surely one of those times for Paterson. Thus he not only lost an opportunity but lost my vote as well.
Please note the last few words of the above paragraph--read carefully--surely access is a priority. Yes, access is a priority. It always is subject of discussion and all agree it is the right thing to do. Many point out it is the law. Yet a funny thing always seems to happen between the drawing board meetings when one and all agree access is the right thing to do and when construction or renovation takes place. Access, once believed to be a requirement, becomes a problem at some point. Golly those pesky elevators and electric door openers sure do cost a lot of money. Do we really need every entrance to be accessible? Is it required to have an electric door opener at every entrance? And, wow, that ramp sure does take up a tremendous amount of space and is a real eye sore. Why can't people with a disability enter through the backdoor? We can give anyone who is disabled a "special key". The rationalizations are endless and signify that access is valued in theory but when it comes to budgeting is always the first line item cut. Deleting access is a great cost savings. Why have two accessible bathrooms when one will suffice. Well you need more than one bathroom because every constipated person in America gravitates to the one damn bathroom stall I can enter. Electric door openers are needed at the entrance to the library because people often have their hands full of books they are trying to take out or return. I know this because I often drop books when opening and closing library doors. And Governor Paterson when I vote I would like to vote in the town where I live. I hardly think this is much to ask. We do live in a Democracy! But no, I must send in an absentee ballot or vote in a nearby town that has an accessible polling place. Despite my complaint I am lucky. I have a car and getting to the next town is no problem. What about the members of the community that do not own a car? No mass transportation is available, two acre zoning is the norm where I live, and I am sure people do not vote because they do not have access to a polling place.
The skeptic in me would love to point out that it is in Paterson's best interest to insure all polling places are accessible. Paterson needs all the votes he can get as he faces an uphill battle for his re-election. Paterson however knows the disability community well. Too many of us do not vote and few politicians see us as a voting block--Paterson included. Here is the additional problem. Paterson has no connection to the disability community. If he did, he would not have vetoed the bill in question regardless of the cost or time frame. He should know you cannot place a price tag on one's civil rights and ability to access a polling place. When elected Paterson talked about the discrimination he encountered as a young man because he was blind. He overcame the needless obstacles that were placed in his way when trying to access an education. But I think he has forgotten where he came from. Like many successful politicians, he is insulated from reality and surrounded by handlers that control the ebb and flow of information. I sincerely doubt he is connected with others who are blind and is distant from the vibrant disability community. Perhaps he has always maintained this distance. I do not know the man but it is obvious he desperately wants to retain his position. Maybe I am not being fair as every politician is self centered. Moreover, Paterson was not elected to the governorship and perhaps he feels as though he has something to prove. Regardless, the bottom line is that he knows access is not valued and hence an easy item to cut. Given the dismal state of the economy, many such cuts are being made. However, this veto is dead wrong and sends a very bad message. Access is a "burden" and federal waivers are not only acceptable but Paterson is willing to let them remain. I may be all wrong and for a different take on Paterson please read Planet of the Blind today. Kuusisto has a post, "Why Governor Paterson Doesn't Get It", that I found thought provoking. We may have a different take on the matter but the important point is that the veto is as wrong as wrong can be. I hope Paterson realizes this and his veto was just a matter of politics. Yet sometimes a politician must go against the grain and this was surely one of those times for Paterson. Thus he not only lost an opportunity but lost my vote as well.
Tuesday, September 15, 2009
The MDA Telethon is Destructive
Every Labor Day weekend the MDA hosts its annual telethon with Jerry Lewis as its host. Held every year since 1966, the MDA telethon was and remains the most well-known telethon in America. Historically, telethons are extremely successful means to raise money. According to various news organizations, the MDA telethon raised nearly $60 million this year. This is proof positive pity as a means of fundraising worked in the past and still works today. In spite of the telethons effectiveness financially, most organizations abandoned them years ago. The reason telethons no longer exist is simple--their reliance on pity and the exploitation of degrading visual images of children were deemed objectionable. Pity may remain an effective way to raise money but even pity as a ploy to raise money has its limits. In the words of Ms. Crip Chick, "disabled people protest the telethon because of its outdated, negative portrayal of disabilities. These images that the telethon promotes sticks in people’s minds and continually serve as a barrier for disabled people. Disability is not the problem, but rather the attitudes and barriers that society places on us."
The MDA and Jerry Lewis have not gotten this message as they have refused to abandon their annual telethon. In addition the MDA and Jerry Lewis in particular have been obnoxious about their refusal to change and use modern fundraising techniques that are not inherently dehumanizing. Jerry Lewis has also said many derogatory and shockingly nasty things about not only people with disabilities but his critics. Anyone familiar with disability rights and an organization called Jerry Orphans knows the exchanges between Jerry Lewis and his critics have been extremely pointed. What amazes me about these exchanges is how poorly those that protest against the MDA telethon and Jerry Lewis come across in media sound bites. If you doubt me, read what Harriet McBryde Johnson wrote in her wonderful memoir Too Late to Die Young.
With great trepidation I sat down to watch the MDA telethon with my son. We did not watch long as I got increasingly angry with every minute that passed while my son complained about how bad the coverage was. A patina of political correctness cannot gloss over the fact pity remains the heart and soul of all telethons. All the flowery imagery in the world cannot change the premise upon which the MDA telethon is based. Sitting with my son I literally screamed "piss on pity" at the television screen and pondered calling the MDA. Should I tie up a phone line and explain to the operator working for the MDA that the telethon was setting back disability rights and hurting the very people it was trying to help? My son pointed out how useless and frustrating such an endeavor would be and suggested instead that I carefully read and support all the critical news reports that would surely appear following the telethon. I agreed and waited for such reports. I created a google news alert on my computer and was rewarded with a big fat zero--as in no reports of protests that took place. What I did get was news reports on how much money the MDA raised. Yes, $60 million was raised, a remarkable amount given the state of the economy. The MDA slapped itself on the back for a job well done. This only fueled my fury until yesterday. Finally someone wrote a great post about the MDA. Here I refer to Beth Haller at Media dis&dat. For those unfamiliar with Haller's blog, it is a wonderful resource on disability and the news media. Updated daily, Hallar provides an outstanding database of news and information that appear in the media about people with disabilities. I consider her blog must reading.
In Haller's blog entry of September 14, "Have MDA and Parade Magazine Parted Ways?", she provides a few great links to disability community protests and raises a fascinating point: a tradition of the MDA telethon is that Jerry Lewis appears on the cover of Parade magazine to promote the telethon. This year no such image appeared. Haller, referring to a columnist from the Roanoke Times, raises another interesting point. An article about muscular dystrophy research appeared in Parade magazine that plugged the telethon but did not feature Jerry Lewis. In Haller's estimation this is a positive development. She wrote: "I have noticed fewer and fewer local TV stations carrying it, which I personally think is a good thing. Every organization has the right to raise funds, but to me, telethons are a relic of a bygone TV era and many telethon tactics can be very demeaning to people with disabilities. So here's hoping that this Parade MDA cover omission signals an understanding of just how hurtful a pity approach to fundraising can be for people with disabilities." I can only second Haller's hope that the MDA telethon will become a relic of the past. To this end, I sent an email to the editor of Parade magazine praising the absence of Jerry Lewis on its cover and encouraged them to publish an article on why telethons should not be aired on television. I realize such an article will never be written but at least progress is being made. Parade magazine is afterall targeted at mainstream America. Who knows, perhaps the MDA will abandon its telethon and distance itself from Jerry Lewis. While I doubt this will happen while Jerry Lewis still yields great power I think the end of the MDA telethon is inevitable. When it does come to an end, who knows, I may just make a donation to the MDA.
The MDA and Jerry Lewis have not gotten this message as they have refused to abandon their annual telethon. In addition the MDA and Jerry Lewis in particular have been obnoxious about their refusal to change and use modern fundraising techniques that are not inherently dehumanizing. Jerry Lewis has also said many derogatory and shockingly nasty things about not only people with disabilities but his critics. Anyone familiar with disability rights and an organization called Jerry Orphans knows the exchanges between Jerry Lewis and his critics have been extremely pointed. What amazes me about these exchanges is how poorly those that protest against the MDA telethon and Jerry Lewis come across in media sound bites. If you doubt me, read what Harriet McBryde Johnson wrote in her wonderful memoir Too Late to Die Young.
With great trepidation I sat down to watch the MDA telethon with my son. We did not watch long as I got increasingly angry with every minute that passed while my son complained about how bad the coverage was. A patina of political correctness cannot gloss over the fact pity remains the heart and soul of all telethons. All the flowery imagery in the world cannot change the premise upon which the MDA telethon is based. Sitting with my son I literally screamed "piss on pity" at the television screen and pondered calling the MDA. Should I tie up a phone line and explain to the operator working for the MDA that the telethon was setting back disability rights and hurting the very people it was trying to help? My son pointed out how useless and frustrating such an endeavor would be and suggested instead that I carefully read and support all the critical news reports that would surely appear following the telethon. I agreed and waited for such reports. I created a google news alert on my computer and was rewarded with a big fat zero--as in no reports of protests that took place. What I did get was news reports on how much money the MDA raised. Yes, $60 million was raised, a remarkable amount given the state of the economy. The MDA slapped itself on the back for a job well done. This only fueled my fury until yesterday. Finally someone wrote a great post about the MDA. Here I refer to Beth Haller at Media dis&dat. For those unfamiliar with Haller's blog, it is a wonderful resource on disability and the news media. Updated daily, Hallar provides an outstanding database of news and information that appear in the media about people with disabilities. I consider her blog must reading.
In Haller's blog entry of September 14, "Have MDA and Parade Magazine Parted Ways?", she provides a few great links to disability community protests and raises a fascinating point: a tradition of the MDA telethon is that Jerry Lewis appears on the cover of Parade magazine to promote the telethon. This year no such image appeared. Haller, referring to a columnist from the Roanoke Times, raises another interesting point. An article about muscular dystrophy research appeared in Parade magazine that plugged the telethon but did not feature Jerry Lewis. In Haller's estimation this is a positive development. She wrote: "I have noticed fewer and fewer local TV stations carrying it, which I personally think is a good thing. Every organization has the right to raise funds, but to me, telethons are a relic of a bygone TV era and many telethon tactics can be very demeaning to people with disabilities. So here's hoping that this Parade MDA cover omission signals an understanding of just how hurtful a pity approach to fundraising can be for people with disabilities." I can only second Haller's hope that the MDA telethon will become a relic of the past. To this end, I sent an email to the editor of Parade magazine praising the absence of Jerry Lewis on its cover and encouraged them to publish an article on why telethons should not be aired on television. I realize such an article will never be written but at least progress is being made. Parade magazine is afterall targeted at mainstream America. Who knows, perhaps the MDA will abandon its telethon and distance itself from Jerry Lewis. While I doubt this will happen while Jerry Lewis still yields great power I think the end of the MDA telethon is inevitable. When it does come to an end, who knows, I may just make a donation to the MDA.
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