I watched the debate between Biden and Palin from beginning to end. What a waste of time. Media hacks and the producers of Saturday Night Live did get what they fervently hoped for--a gaffe of historic proportions by Palin. For 90 minutes I saw two politicians put on act when I had expected a debate. I knew the format was made for TV sound bites and prevented the candidates from providing any answer in detail. Yet I hoped, as I always do, for answers that contained substance. I also hoped that the issue of disability rights would be raised but it was only mentioned once in passing. Gosh, I am hopelessly naive.
Over coffee this morning one thing struck me: the debate last night was not a debate. The moderator asked some good questions that were rarely if ever answered. Palin and Biden acknowledged the moderator question and quickly produced a statement that had nothing to do with what was asked. These pre-packaged and scripted replies have been uttered hundreds of times and were ever so safe. No emotion, feeling, or passion was evident. The end result was the debate was boring, devoid of meaning and a waste of time. This only highlights what I wrote yesterday--our political system and elected officials are a class apart unaware, unable, or unwilling to address the pressing issues that affect most Americans.
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.
Friday, October 3, 2008
Thursday, October 2, 2008
Palin Twists Words and We all Suffer the Consequences
Patricia Bauer has once again brought my attention to a news story that I missed. Apparently Palin was interviewed by conservative talk show host Hugh Hewitt. I am not familiar with Hewitt as I try to avoid listening to conservative radio programs. The transcript and full interview with Palin can be found at Hugh Hewitt's website. The interview and transcript are about what one would expect. Like Bauer, I was struck by Palin's answer to one question. Hewitt asked Palin about her pro-life and anti abortion views speculating that the birth of her son Trig was partially responsible for why the mainstream media hates her.
Palin's reply to Hewitt is hard to follow, misleading and highlights her extreme religious and conservative views. Palin stated this is "the most hurtful and nonsensical slap that we've been taking" referring to her pro-life position. Palin goes on to lament the fact that people "just don't understand" her decision give birth to Trig. For Palin this is ironic because she is trying to usher in a "culture of life" while her opponent Obama would not support a measure that would ban partial birth abortion. Palin thinks that Obama's position is "so far, far left its certainly out of the mainstream of America. To me, that is the extreme position, not my position of just wanting that the culture of life to be respected, and not wanting government to sanction the idea of ending life".
Like Palin, I too don't understand. I don't understand why she cannot separate her religious and political views. I don't understand how giving birth to her son Trig who has Down Syndrome instantly transformed her into an advocate for children with special needs. I don't understand why adults with Down Syndrome are stigmatized and often are forced to live in an institution. I don't understand why programs that could empower disabled people are objectionable to the Republican Party. I don't understand why the unemployment rate for people with a disability has been and remains about 70% I don't understand why Paralympic athletes are grossly underfunded. I don't understand why the Supreme Court has gutted the ADA. I don't understand why people have no clue what disability rights are but quickly acknowledge the civil rights of other minority groups.
Partisan politics are pointless, a fact that seems to have escaped the notice of both the McCain and Obama campaigns. There is much that needs to be done in this country given the dismal state of the economy. It is painfully obvious to me that the most vulnerable are truly suffering or simply worried about whether they can afford to heat their homes this winter. Like many others, I don't understand how we arrived at this juncture. How did so much of the wealth in this country end up in the hands of such a tiny minority of individuals. I for one blame Ronald Reagan and his pro-business anti-regulatory philosophy that has run amuck the last two decades. What is good for business is not necessarily good for the people of this country when giant corporations are run by CEOs that have no conception of ethics. Will any of this be discussed tonight when Biden and Palin square off with another? Not a chance and that is the fault of a deeply flawed electoral process that has enabled our elected officials to become a class apart who have no connection to the people that voted for them.
Palin's reply to Hewitt is hard to follow, misleading and highlights her extreme religious and conservative views. Palin stated this is "the most hurtful and nonsensical slap that we've been taking" referring to her pro-life position. Palin goes on to lament the fact that people "just don't understand" her decision give birth to Trig. For Palin this is ironic because she is trying to usher in a "culture of life" while her opponent Obama would not support a measure that would ban partial birth abortion. Palin thinks that Obama's position is "so far, far left its certainly out of the mainstream of America. To me, that is the extreme position, not my position of just wanting that the culture of life to be respected, and not wanting government to sanction the idea of ending life".
Like Palin, I too don't understand. I don't understand why she cannot separate her religious and political views. I don't understand how giving birth to her son Trig who has Down Syndrome instantly transformed her into an advocate for children with special needs. I don't understand why adults with Down Syndrome are stigmatized and often are forced to live in an institution. I don't understand why programs that could empower disabled people are objectionable to the Republican Party. I don't understand why the unemployment rate for people with a disability has been and remains about 70% I don't understand why Paralympic athletes are grossly underfunded. I don't understand why the Supreme Court has gutted the ADA. I don't understand why people have no clue what disability rights are but quickly acknowledge the civil rights of other minority groups.
Partisan politics are pointless, a fact that seems to have escaped the notice of both the McCain and Obama campaigns. There is much that needs to be done in this country given the dismal state of the economy. It is painfully obvious to me that the most vulnerable are truly suffering or simply worried about whether they can afford to heat their homes this winter. Like many others, I don't understand how we arrived at this juncture. How did so much of the wealth in this country end up in the hands of such a tiny minority of individuals. I for one blame Ronald Reagan and his pro-business anti-regulatory philosophy that has run amuck the last two decades. What is good for business is not necessarily good for the people of this country when giant corporations are run by CEOs that have no conception of ethics. Will any of this be discussed tonight when Biden and Palin square off with another? Not a chance and that is the fault of a deeply flawed electoral process that has enabled our elected officials to become a class apart who have no connection to the people that voted for them.
Wednesday, October 1, 2008
Symbiosis: A Biological and Social Failure
I do not watch any morning TV programs in spite of the fact I am an early riser. I find such shows painful. The sunny disposition of the hosts annoys me as does the vacuous nature of the program content. Please take this into consideration when you read what I am about to write as I am hopelessly biased.
On September 29 the Today Show with Hoda Kotb and Kathy Lee Gifford had an "inspiring" segment and "touching" story about Lance Carr. In a telephone interview Kotb and Gifford informed Carr he was the first person chosen to be featured on their "Everyone Has a Story" series. I knew this segment would be a simplistic tear jerker and the depths to which the story fell in this regard was as expected. Gifford teared up multiple times during the interview and hit a particularly low low when she stated "He [Lance Carr] suffers everyday in ways we cannot fathom. This just kills you: He says he has never held a loved one in his arms in his life". When the interview with Carr ended Gifford asked "Could I have a kleenex, please?" Oh, please spare me this trite melodrama.
This is what went through my mind during the interview: Why would Carr seek to demean himself and his family by appearing on the Today Show? Why is Carr utterly dependent on his father to provide basic care for his activities of daily living? Why was Carr's father forced to leave his hospital bed against medical advice to care for his son? Why has Carr never been on an airplane and why did he expect his flight to be tough? Most importantly, why did Kotb and Gifford not ask Carr about his employment suit?
Carr's life is of interest but not for any of the reasons Kotb and Gifford expressed. What struck me was the sappy tone of Carr's letter that led the Today Show to pick him as the "winner" for the segment "Everyone Has a Story". I need not quote this letter as it emphasizes the fact Carr's father is a "hidden hero". This focus infuriated me. It also reinforced that society has refused to consider disability from a civil rights perspective. It is much easier, and cheaper, to laud heroes and quickly forget them. Society does not want to waste its limited resources on empowering crippled people. When crippled people point out what is obvious, the gross violation of their civil rights, few notice and no one cares. Those that question the status quo are considered crippled narcissists; self-absorbed individuals who should be happy for a hand out. Society does not want uppity cripples. Society loves heroes that overcome individual obstacles and fail to recognize the real problem: bigotry.
The total disregard of disability rights never ceases to shock me. This has profound implications socially. For instance, Carr acknowledges that he is completely dependent upon his father. This dependence between father and son can only be characterized as symbiotic--as in a biological definition of the term: “a close, prolonged association between two or more different organisms of a species that may, but does not necessarily, benefit each member”. Carr's life in my view is a social tragedy as is his relationship with his father, one supported and encouraged by a society unwilling to accept the humanity of crippled people. As a parent, I admire and detest Carr's father. I admire his sacrifice but question why did it come to this? Where are the support services to empower disabled people. Where, I wonder, are people with a similar disability, who do not have the Carr familial support system? This highlights the mixed results of the ADA--some people have benefited but far too many end up in a nursing rotting away or dead.
It is easy for me to damn the Today Show and question the decisions made by the Carr family. The Carrs and the Today Show are hardly unique in failing to acknowledge legislative and societal initiatives in disability rights. To view disability from a civil rights perspective is out of the norm and I suspect my words will anger some people. I simply refuse to cater to the lowest common denominator and characterize the Carr's as remarkable human beings. I want people to think and act, to fight for their inherent human rights. Please think about this story and look past the superficial crap. Consider this: What social obstacle will Carr and his family encounter when they try to board an airplane? Will the Carrs be the very first person on and off the plane as is the norm? Will they be forced to wait hours for trained personnel to appear with an aisle chair so they can get off the plane? (this happens frequently). Will the only elevator in the terminal at LaGuardia be locked? Will a bus be available that has an operational wheelchair lift and bus driver that knows how to work it? Some how I doubt these routine social problems will be discussed on the Today Show. If Kotb and Gifford want to cover a real story they need only follow disabled people as they try to lead an ordinary life.
On September 29 the Today Show with Hoda Kotb and Kathy Lee Gifford had an "inspiring" segment and "touching" story about Lance Carr. In a telephone interview Kotb and Gifford informed Carr he was the first person chosen to be featured on their "Everyone Has a Story" series. I knew this segment would be a simplistic tear jerker and the depths to which the story fell in this regard was as expected. Gifford teared up multiple times during the interview and hit a particularly low low when she stated "He [Lance Carr] suffers everyday in ways we cannot fathom. This just kills you: He says he has never held a loved one in his arms in his life". When the interview with Carr ended Gifford asked "Could I have a kleenex, please?" Oh, please spare me this trite melodrama.
This is what went through my mind during the interview: Why would Carr seek to demean himself and his family by appearing on the Today Show? Why is Carr utterly dependent on his father to provide basic care for his activities of daily living? Why was Carr's father forced to leave his hospital bed against medical advice to care for his son? Why has Carr never been on an airplane and why did he expect his flight to be tough? Most importantly, why did Kotb and Gifford not ask Carr about his employment suit?
Carr's life is of interest but not for any of the reasons Kotb and Gifford expressed. What struck me was the sappy tone of Carr's letter that led the Today Show to pick him as the "winner" for the segment "Everyone Has a Story". I need not quote this letter as it emphasizes the fact Carr's father is a "hidden hero". This focus infuriated me. It also reinforced that society has refused to consider disability from a civil rights perspective. It is much easier, and cheaper, to laud heroes and quickly forget them. Society does not want to waste its limited resources on empowering crippled people. When crippled people point out what is obvious, the gross violation of their civil rights, few notice and no one cares. Those that question the status quo are considered crippled narcissists; self-absorbed individuals who should be happy for a hand out. Society does not want uppity cripples. Society loves heroes that overcome individual obstacles and fail to recognize the real problem: bigotry.
The total disregard of disability rights never ceases to shock me. This has profound implications socially. For instance, Carr acknowledges that he is completely dependent upon his father. This dependence between father and son can only be characterized as symbiotic--as in a biological definition of the term: “a close, prolonged association between two or more different organisms of a species that may, but does not necessarily, benefit each member”. Carr's life in my view is a social tragedy as is his relationship with his father, one supported and encouraged by a society unwilling to accept the humanity of crippled people. As a parent, I admire and detest Carr's father. I admire his sacrifice but question why did it come to this? Where are the support services to empower disabled people. Where, I wonder, are people with a similar disability, who do not have the Carr familial support system? This highlights the mixed results of the ADA--some people have benefited but far too many end up in a nursing rotting away or dead.
It is easy for me to damn the Today Show and question the decisions made by the Carr family. The Carrs and the Today Show are hardly unique in failing to acknowledge legislative and societal initiatives in disability rights. To view disability from a civil rights perspective is out of the norm and I suspect my words will anger some people. I simply refuse to cater to the lowest common denominator and characterize the Carr's as remarkable human beings. I want people to think and act, to fight for their inherent human rights. Please think about this story and look past the superficial crap. Consider this: What social obstacle will Carr and his family encounter when they try to board an airplane? Will the Carrs be the very first person on and off the plane as is the norm? Will they be forced to wait hours for trained personnel to appear with an aisle chair so they can get off the plane? (this happens frequently). Will the only elevator in the terminal at LaGuardia be locked? Will a bus be available that has an operational wheelchair lift and bus driver that knows how to work it? Some how I doubt these routine social problems will be discussed on the Today Show. If Kotb and Gifford want to cover a real story they need only follow disabled people as they try to lead an ordinary life.
Monday, September 29, 2008
A Duty to Die
About a week ago Baroness Mary Helen Warnock stated in an interview that people suffering from dementia have a duty to commit suicide. According to news reports, Warnock is called the "philosopher queen" and is regarded as Britain's leading moral philosopher. I think of her as the British version of Peter Singer, a person that would advocate the killing of a host of people.
I vowed last week I would not comment on Warnock. People like Warnock and Singer deeply upset me. I was really troubled by Warnock's interview with the Church of Scotland's Life and Work magazine where she stated: "If you're demented, you're wasting people's lives--your family's lives and you're wasting the resources of the National Health Service." This comment is offensive enough but when I read about another article in a Norwegian periodical entitled "A Duty to Die" I became even more incensed. Warnock suggests "There's nothing wrong with feeling you ought to do so [commit suicide] for the sake of others as well as yourself. In other contexts, sacrificing one's self for family would be considered good. I don't see what is so horrible about the motive of not wanting to be an increasing nuisance".
Warnock's views are not unusual. There are other prominent members of Britain's House of Lords that advocate euthanasia. The same can be said for some states in America--Oregon springs to mind quickly in terms of the euthanasia debate. What I find dangerous about people like Warnock and Singer is not necessarily their views. They have the right to state whatever they think just as I share the same right. What worries me is Warnock's academic position--that is her position carries a great deal of prestige. This prestige can give a certain moral and academic authority to their views that are not warranted in my estimation. Some bio-ethicists add a secondary veneer of legitimacy to the views of people like Warnock. Based on my experience, the only people that have the moral authority and personal knowledge to make life and death decisions are the those directly involved. Here I refer to the person whose life is nearing the end, doctors, family, clergy, and loved ones. Even under the best of circumstances end of life decisions are fraught with anxiety and uncertainty. How Warnock can make such questionable statements is beyond me. But I am glad she is not in the position to make any real decisions regarding life and death. Had she been in such a position when I was a child I may not exist today.
I vowed last week I would not comment on Warnock. People like Warnock and Singer deeply upset me. I was really troubled by Warnock's interview with the Church of Scotland's Life and Work magazine where she stated: "If you're demented, you're wasting people's lives--your family's lives and you're wasting the resources of the National Health Service." This comment is offensive enough but when I read about another article in a Norwegian periodical entitled "A Duty to Die" I became even more incensed. Warnock suggests "There's nothing wrong with feeling you ought to do so [commit suicide] for the sake of others as well as yourself. In other contexts, sacrificing one's self for family would be considered good. I don't see what is so horrible about the motive of not wanting to be an increasing nuisance".
Warnock's views are not unusual. There are other prominent members of Britain's House of Lords that advocate euthanasia. The same can be said for some states in America--Oregon springs to mind quickly in terms of the euthanasia debate. What I find dangerous about people like Warnock and Singer is not necessarily their views. They have the right to state whatever they think just as I share the same right. What worries me is Warnock's academic position--that is her position carries a great deal of prestige. This prestige can give a certain moral and academic authority to their views that are not warranted in my estimation. Some bio-ethicists add a secondary veneer of legitimacy to the views of people like Warnock. Based on my experience, the only people that have the moral authority and personal knowledge to make life and death decisions are the those directly involved. Here I refer to the person whose life is nearing the end, doctors, family, clergy, and loved ones. Even under the best of circumstances end of life decisions are fraught with anxiety and uncertainty. How Warnock can make such questionable statements is beyond me. But I am glad she is not in the position to make any real decisions regarding life and death. Had she been in such a position when I was a child I may not exist today.