I continue to scour British newspapers for stories about Daniel James. Based on my reading, the vast majority of people continue to praise James parents as "courageous" and "selfless". What has been left unquestioned are the implications of James decision to commit suicide in terms of the lives of people with a disability. If Mr. James is perceived as having tremendous inner strength to end his own life and had the support of his loving parents what does this say about people with disabilities that choose to continue to lead rich and productive lives? In the estimation of one woman, Sue Garner-Jones, she is now perceived as selfish for merely wanting to live. In an article in the Liverpool Daily Post Garner-Jones stated that "People make their own decisions about how to live their life. But there's a lot of talk about bravery and courage for people who are opting out of living their lives. I didn't like the inverse of that". The controversy that surrounds the death of Mr. James has Garner-Jones and many disabled people worried. According to Garner-Jones, "I am seriously concerned that this might have a detrimental effect on anyone who lives with a disability, or cares for someone in this situation, especially since Mr. and Mrs. James referring to his life as a tetraplegic as second class".
When I read Garner-Jones words I was delighted. A voice in the wilderness has spoken out and cut to the heart of the debate about Mr. James death. People with disabilities are not second class citizens. Disabled people have the right to live and enjoy the same civil rights as those that can walk. Those of us who are disabled are not selfish nor are we a burden on society or a drain on the health care system. Paralyzed people are not terminally ill--they have a physical deficit that is compounded by society. As one who is disabled and proud I know that disability is a social construct and that the real problem is not paralysis but the obstacles placed on top of it. If you want to talk about bravery I suggest you forget about Mr. James. To me, he and his parents are cowards who chose an easy way out. The people that are brave are like Garner-Jones who gets up every morning, goes to work, and will most likely encounter needless bigotry at some point during the day. The bigotry Garner-Jones encounters is disability based and relentless. It is based on the false assumption that she is somehow inferior, a tragically flawed human, because she cannot walk. Garner-Jones will be stared at, belittled, degraded, and ignored. Like Garner-Jones and many others, I know far too much about this sort of "spoiled identity" to use the phraseology of Erving Goffman. Tragically, Mr. James will never learn about this nor will he ever be able to assert his civil rights. This takes a kind of bravery James and his parents did not possess.
Thursday, November 13, 2008
Wednesday, November 12, 2008
Assisted Suicide and Disability
Assisted suicide has thrust itself in the news. In Washington voters recently passed an Oregon State type assisted suicide bill. Other states such as California and Vermont might legalize assisted suicide as well. In the U.K. the death of Daniel James has promoted headlines and a fierce debate about the merits of euthanasia. Some characterize Mr. James parents who escorted their paralyzed son to a Swiss assisted suicide "clinic" as being saintly and loving; their actions were a rational response given their son's disability. Most of my friends, largely academics, support assisted suicide. Polls also show the majority of Americans support assisted suicide. I readily understand why many support assisted suicide. I vividly recall seeing my father in ICU after he had a major stroke. What I remember the most aside from seeing my father on the brink of death were the other patients. Many of the people I saw would not recover and had no loved ones to care for them. I recall thinking at the time that people may be living longer but wondered about the quality of that life. I also recall questioning whether the resources spent to extend those lives was worthwhile. My emotional response was soon tempered by the harsh reality that once society determines who is "valuable" enough to live we have decided that some human life is not worth living. Society may be killing its members out of kindness but the end result, death, speaks volumes about our culture and what sort of life we value.
I oppose assisted suicide because it is too easy to kill. Proponents of assisted suicide point out that the merits of assisted suicide are self evident. Why extend the life of people who are terminally ill and in severe pain? Shouldn't an individual have the right to determine if their life is worth living? The problem with this line of reasoning is that those who choose assisted suicide are often not terminally ill. In Oregon where assisted suicide has been legal for over a decade psychiatrists that interviewed those that wanted to die discovered one in four people had undiagnosed clinical depression. In my estimation assisted suicide discriminates against people that have been historically disenfranchised. Here I refer to people that are physically or mentally disabled. The fear of disability permeates our culture and many people believe death is preferable to life with a disability. This is why Mr. James parents helped end their son's life. This fear of disability is also why Mr. James parents have been lauded in the press. This sort of logic scares me to death--pun intended.
Some readers may doubt the grounds upon which I am fearful. Surely a paralyzed man such as myself with a home, family, and job will be treated the same as a person that walks into a hospital. Wrong, very wrong. Doctors are human beings whose education does not preclude their ability to unknowingly or knowingly discriminate against disabled people. If and when I enter a hospital I know I am a liability and will not receive the support needed. Thus if I expressed an overwhelming desire to end my own life I wonder what the response would be. Would the attending physician request a psychological consult or would this person think my desire to die was understandable given the fact I have been paralyzed for over 30 years. This is what I am fearful of, disability based bigotry. This line of reasoning, death is preferable to disability, provided the social justification for loving parents to kill their own son. If parents can rationalize killing a child, I shudder to think what society has in store for me.
Proponents of assisted suicide are quick to point out that people who are suffering from fatal diseases should have the right to end their own life. Why should a person and a family suffer when death is inevitable? This logic is often accompanied by a heart wrenching story about a terminally ill person. Not only does a dying person needlessly suffer but the family is plunged into debt because they lacked adequate medical insurance. The only response to this tragic story is that the ill should be in control of their life and death. Wesley Smith characterizes the intent of assisted suicide as "unquestionably intended to be kind; but they are not. With such deaths emotively and sympathetically reported in the media, and with every lawsuit that chinks away at the laws intended to protect people with serious difficulties from suicide, mercy killing becomes more easily envisioned, more comfortably embraced" (Smith, Secondhand Smoke).
Mr. James death and his parents decision to facilitate it so soon after he was disabled haunts me. I mourn the life of a man I did not know and cannot begin to fathom the actions of his parents. I worry about the implications of James' death. Will a doctor that read about James death decide a person who had a traumatic spinal cord injury life is not worth living and withhold treatment? Selfishly I worry about myself. Will a doctor decide my life is not worth living? I also worry about the degree to which Mr. James death has affected the euthanasia debate in the U.K. Will his death impact Debbie Purdy's case. Ms. Purdy has MS and wants to know if her husband will be arrested should she decide to end her life at the same Swiss clinic where Mr. James died.
One other variable merits mention with regard to suicide and the fear of disability. If I have one learned one thing about life with paralysis it is that caring for such a body is expensive. I know this as does the medical establishment and insurance industry. Given the current global economic crisis the cost of caring for those people with a disability is under intense scrutiny. Budgets across the country are being slashed and the first services that are eliminated affect those that can least afford it--people with cognitive disabilities. Waiting lists for essential services are the norm and growing. Many I know worry American society is taking a step backward to an era when people with cognitive disabilities were warehoused in institutions. Conditions at these institutions were deplorable. The point I am trying to make is that all life has value. The debate about assisted suicide has broad and long lasting implications. There is in my estimation nothing for medical ethicists to agonize over in terms of assisted suicide. Facilitating the death of a human being is wrong and cannot be justified at any level.
I oppose assisted suicide because it is too easy to kill. Proponents of assisted suicide point out that the merits of assisted suicide are self evident. Why extend the life of people who are terminally ill and in severe pain? Shouldn't an individual have the right to determine if their life is worth living? The problem with this line of reasoning is that those who choose assisted suicide are often not terminally ill. In Oregon where assisted suicide has been legal for over a decade psychiatrists that interviewed those that wanted to die discovered one in four people had undiagnosed clinical depression. In my estimation assisted suicide discriminates against people that have been historically disenfranchised. Here I refer to people that are physically or mentally disabled. The fear of disability permeates our culture and many people believe death is preferable to life with a disability. This is why Mr. James parents helped end their son's life. This fear of disability is also why Mr. James parents have been lauded in the press. This sort of logic scares me to death--pun intended.
Some readers may doubt the grounds upon which I am fearful. Surely a paralyzed man such as myself with a home, family, and job will be treated the same as a person that walks into a hospital. Wrong, very wrong. Doctors are human beings whose education does not preclude their ability to unknowingly or knowingly discriminate against disabled people. If and when I enter a hospital I know I am a liability and will not receive the support needed. Thus if I expressed an overwhelming desire to end my own life I wonder what the response would be. Would the attending physician request a psychological consult or would this person think my desire to die was understandable given the fact I have been paralyzed for over 30 years. This is what I am fearful of, disability based bigotry. This line of reasoning, death is preferable to disability, provided the social justification for loving parents to kill their own son. If parents can rationalize killing a child, I shudder to think what society has in store for me.
Proponents of assisted suicide are quick to point out that people who are suffering from fatal diseases should have the right to end their own life. Why should a person and a family suffer when death is inevitable? This logic is often accompanied by a heart wrenching story about a terminally ill person. Not only does a dying person needlessly suffer but the family is plunged into debt because they lacked adequate medical insurance. The only response to this tragic story is that the ill should be in control of their life and death. Wesley Smith characterizes the intent of assisted suicide as "unquestionably intended to be kind; but they are not. With such deaths emotively and sympathetically reported in the media, and with every lawsuit that chinks away at the laws intended to protect people with serious difficulties from suicide, mercy killing becomes more easily envisioned, more comfortably embraced" (Smith, Secondhand Smoke).
Mr. James death and his parents decision to facilitate it so soon after he was disabled haunts me. I mourn the life of a man I did not know and cannot begin to fathom the actions of his parents. I worry about the implications of James' death. Will a doctor that read about James death decide a person who had a traumatic spinal cord injury life is not worth living and withhold treatment? Selfishly I worry about myself. Will a doctor decide my life is not worth living? I also worry about the degree to which Mr. James death has affected the euthanasia debate in the U.K. Will his death impact Debbie Purdy's case. Ms. Purdy has MS and wants to know if her husband will be arrested should she decide to end her life at the same Swiss clinic where Mr. James died.
One other variable merits mention with regard to suicide and the fear of disability. If I have one learned one thing about life with paralysis it is that caring for such a body is expensive. I know this as does the medical establishment and insurance industry. Given the current global economic crisis the cost of caring for those people with a disability is under intense scrutiny. Budgets across the country are being slashed and the first services that are eliminated affect those that can least afford it--people with cognitive disabilities. Waiting lists for essential services are the norm and growing. Many I know worry American society is taking a step backward to an era when people with cognitive disabilities were warehoused in institutions. Conditions at these institutions were deplorable. The point I am trying to make is that all life has value. The debate about assisted suicide has broad and long lasting implications. There is in my estimation nothing for medical ethicists to agonize over in terms of assisted suicide. Facilitating the death of a human being is wrong and cannot be justified at any level.
Monday, November 10, 2008
NBC Documentary on the 2008 Paralympics
Yesterday NBC broadcast the 90 minute documentary about the 2008 Paralympic Games. The broadcast was a series of biographical stories about American Paralympians. For the most part, the documentary did not present viewers with mindless emotional "feel good stories" that dominate adaptive adaptive sports reporting. Yes, overcoming was a major theme throughout the documentary but this is typical of sports documentaries. Three primary problems undermined the documentary. First, the sound track was dreadful. The music firmly fit into the "inspirational" genre and was at direct odds with the statements made by the Paralympians. There is not a chance such a musical score would ever appear on any other sports documentary. Second, at no point did the documentary delve into the rules, categories, and controversy that surround the competition. Nor was there any discussion of how costly and cutting edge the technology utilized by the athletes. Assuming most people had no exposure to adaptive sports, the viewer simply cannot appreciate or begin the grasp the athletic accomplishments of those portrayed. Third, the biographical segments focused far too much on how the athletes were disabled. To me, this was beside the point. I tuned in to see world class athletes compete not discuss their respective disability.
The power of the documentary can be squarely placed on the articulate and incisive comments by the athletes themselves. For instance, Cheri Blauwet, was particularly impressive. Frankly I thought I would never see the day when I heard someone say on television that "disability is a social construct". I was also impressed by a scene in which an amputee Paralympian is shown talking to school children. The woman in question allowed the kids to hold and pass around her prostheses. The look of wonder and awe on the face of the children is priceless. Rather than perceiving disability as a negative, the kids were impressed and will no doubt think of amputees as being cool.
Given the right kind of exposure, I think the Paralympics could become a mainstream sport. There are many practical and social impediments that would need to be overcome. As pointed out in a column in the Los Angeles Times, the practical problems that prevent the Paralympics of getting any media coverage include the timing and cost. The Paralympics take place after the Olympics Games and the people that cover sports are tired. Budgets are spent and the football and baseball seasons set to dominate all reporting. While I have no ready answer for these logistical issues, I suspect they can be resolved. It is the social reluctance to devote the time and space to adaptive sports reporting that is the real problem. Selling adaptive sports to those who have no clue as to the intense nature of the field is not easy. The stereotypical question asked is who wants to see a bunch of disabled people compete? I suggest for those that ask this question to watch the X-Games. Last winter mono ski races were included for the first time. The coverage was excellent and the races were extremely exciting and popular. The crowds were enthusiastic and imagery captivating. In short, adaptive sports have great potential and NBC took a very small step toward broadcasting viewing that is gripping.
The power of the documentary can be squarely placed on the articulate and incisive comments by the athletes themselves. For instance, Cheri Blauwet, was particularly impressive. Frankly I thought I would never see the day when I heard someone say on television that "disability is a social construct". I was also impressed by a scene in which an amputee Paralympian is shown talking to school children. The woman in question allowed the kids to hold and pass around her prostheses. The look of wonder and awe on the face of the children is priceless. Rather than perceiving disability as a negative, the kids were impressed and will no doubt think of amputees as being cool.
Given the right kind of exposure, I think the Paralympics could become a mainstream sport. There are many practical and social impediments that would need to be overcome. As pointed out in a column in the Los Angeles Times, the practical problems that prevent the Paralympics of getting any media coverage include the timing and cost. The Paralympics take place after the Olympics Games and the people that cover sports are tired. Budgets are spent and the football and baseball seasons set to dominate all reporting. While I have no ready answer for these logistical issues, I suspect they can be resolved. It is the social reluctance to devote the time and space to adaptive sports reporting that is the real problem. Selling adaptive sports to those who have no clue as to the intense nature of the field is not easy. The stereotypical question asked is who wants to see a bunch of disabled people compete? I suggest for those that ask this question to watch the X-Games. Last winter mono ski races were included for the first time. The coverage was excellent and the races were extremely exciting and popular. The crowds were enthusiastic and imagery captivating. In short, adaptive sports have great potential and NBC took a very small step toward broadcasting viewing that is gripping.
Saturday, November 8, 2008
NYT Provides Adaptive Sport Stereotype
The media and the New York Times has provided a perfect example of how to not cover adaptive sports and the Paralympics. Placed under the heading "More Sports" Richard Sandomir has written "Long Overdue, Telecast Isn't Short on Emotion", a review of the NBC documentary about the Beijing Paralympics.
This is how Sandomir started his review: "As I write this, I have finished crying inside my cubicle after watching NBC's documentary about the Paralympics in Beijing. It is a 90-minute, continuous "oh my" journey with amputee sprinters and swimmers, wheelchair basketball players, a paralyzed shot-putter, a sailor with Lou Gehrig's disease..." As I noted yesterday, what always comes first when describing an adaptive athlete is not the person but the disability. While I will acknowledge Olympic coverage always focuses on individual athletes and past struggles, the point of such stories is to highlight an athletic accomplishment. There is no such focus when the media covers adaptive athletes. In fact Sandomir wrote that one athlete "devastated by a brain tumor" was "not competitive in the race that was shown, but that was not the point". Hugh? Winning was not the point? When I read this I was stunned. Would any athlete that competed in the Olympics be characterized in this way, where "winning is not the point". I was under the impression that any athlete that competes in the Olympics or Paralympics is a world class athlete driven to win. Given the sacrifices involved in training, winning must present an overwhelming drive. Word class athletes compete to win, to be the best, and defeat other world class athletes. It is the ultimate success in a given sport. But after reading Sandomir's article, one could easily conclude this is not the case. For Paralympians winning is not the point!
Among other poorly chosen lines include the following:
Quoting the producer "Every race, every event has some incredible story of inspiration".
"Not to denigrate the best of them, but Paralympians really have life stories to stir the soul".
The producer "would return home. usually teary, after editing footage. My wife thought I was going hormonal on her".
"A paralyzed veteran of the war in Iraq, who found new purpose in the shot-put. He cannot spin on strong legs".
NBC should have shown the Paralympic games live. Even now they are only showing highlights of the games on Universal Sports from Monday through next Saturday. For those that are able to watch I am hope you see athletes competing to win not inspire. I hope viewers will acknowledge the athletic prowess involved not a physical deficit. When this happens viewers will see an intense athletic competition that is gripping.
This is how Sandomir started his review: "As I write this, I have finished crying inside my cubicle after watching NBC's documentary about the Paralympics in Beijing. It is a 90-minute, continuous "oh my" journey with amputee sprinters and swimmers, wheelchair basketball players, a paralyzed shot-putter, a sailor with Lou Gehrig's disease..." As I noted yesterday, what always comes first when describing an adaptive athlete is not the person but the disability. While I will acknowledge Olympic coverage always focuses on individual athletes and past struggles, the point of such stories is to highlight an athletic accomplishment. There is no such focus when the media covers adaptive athletes. In fact Sandomir wrote that one athlete "devastated by a brain tumor" was "not competitive in the race that was shown, but that was not the point". Hugh? Winning was not the point? When I read this I was stunned. Would any athlete that competed in the Olympics be characterized in this way, where "winning is not the point". I was under the impression that any athlete that competes in the Olympics or Paralympics is a world class athlete driven to win. Given the sacrifices involved in training, winning must present an overwhelming drive. Word class athletes compete to win, to be the best, and defeat other world class athletes. It is the ultimate success in a given sport. But after reading Sandomir's article, one could easily conclude this is not the case. For Paralympians winning is not the point!
Among other poorly chosen lines include the following:
Quoting the producer "Every race, every event has some incredible story of inspiration".
"Not to denigrate the best of them, but Paralympians really have life stories to stir the soul".
The producer "would return home. usually teary, after editing footage. My wife thought I was going hormonal on her".
"A paralyzed veteran of the war in Iraq, who found new purpose in the shot-put. He cannot spin on strong legs".
NBC should have shown the Paralympic games live. Even now they are only showing highlights of the games on Universal Sports from Monday through next Saturday. For those that are able to watch I am hope you see athletes competing to win not inspire. I hope viewers will acknowledge the athletic prowess involved not a physical deficit. When this happens viewers will see an intense athletic competition that is gripping.
Friday, November 7, 2008
Adaptive Sport Imagery
This Sunday November 9 NBC will broadcast a 90-minute documentary about the 2008 Paralympic Games held in Beijing. The documentary will be narrated by NBC Sports Bob Costas. Produced by award winning NBC Sports producer David Michaels, the documentary will focus on the lives of eight athletes and the men's wheelchair basketball team. The documentary is sponsored by GE.
I look forward to watching the NBC documentary. Readers of this blog know I am interested in adaptive sports and enjoy skiing and kayaking. I ski and kayak because it is fun but am all too aware that the inclusion of disabled people in sports remains out the norm and is socially significant. Society simply does not associate athletic ability with disability. Thus when people see a paralyzed person such as myself skiing or kayaking they often question their preconceived notions of what life must be like with a disability. When participating in sports I feel like I become an ordinary person, that is my disability is not the first thing people observe. In sharp contrast to the positive reaction I get when participating in a sport, the media does a dreadful job covering adaptive sports. Televised stories about adaptive sports reduces the athletic achievements of disabled athletes to "feel good stories". At issue is not the athletic accomplishment but the fact a person "overcame" their disability. This observations is not original but is important. Why is it important? Disabled people in American society are routinely required to provide explanations about disability. Every person I know who has a disability is asked "What happened to you?" or "How did you become paralyzed?" Leonard Davis and Kenny Fries, gifted disability studies scholars, maintain these rude and intrusive questions set the tone for a particular sort of disability based narrative. In Fries The History of My Shoes and the Evolution of Darwin's Theory has written:
when we speak of disability, we associate it with a story, place it in a narrative. A person became deaf, became blind, was born blind, became quadriplegic. The impairment becomes part of a sequential narrative. By doing this we think of disability as linked to individualism and the individual story. What is actually a physical fact becomes a story with a hero or a victim. Disability becomes divorced from the cultural context, and becomes the problem of the individual, not a category defined by the society. The dialectics of normalcy--for someone to be normal, someone as to be not normal--is kept intact.
This narrative is the reason why I dislike documentaries that focus on adaptive sports and disability in general. Disabled people are just not normal every day people. Their lives are ever so special and they are perceived to be "amazing role models" for others. The focus here is exclusively on the individual and a given physical deficit. It is very easy to gush about adaptive athletes. For instance, David Michaels has stated that "In 30 years of covering Olympic sports, I have never witnessed such a rich tapestry of stories and competition. Every race, every event brings wonder and excitement". If adaptive sports are so exciting, filled with such gut wrenching drama why do they not appear on television? Why is there no reporting of adaptive sporting events in newspapers on a daily basis? Why did no major network broadcast the Paralympics? Why does the NCAA basketball tournament in March dominate the news but no one discusses wheelchair basketball? Why are Paralympic athletes woefully underfunded by the USAOC?
The questions I want answers to are rarely if ever discussed. Answers I want to know would require a radical rethinking of the accepted discourse associated with disability. The point I am trying to emphasize is fundamental. It gets to the heart of the disability rights movement. Like others, I do not want to be defined by my disability. I am not Mr. Wheelchair dude. I am a person with a physical disability. I am a human being. I am a father, son, teacher, writer. All these personal characteristics have nothing to do with disability or my wheelchair. Like I said, I am a human being.
I look forward to watching the NBC documentary. Readers of this blog know I am interested in adaptive sports and enjoy skiing and kayaking. I ski and kayak because it is fun but am all too aware that the inclusion of disabled people in sports remains out the norm and is socially significant. Society simply does not associate athletic ability with disability. Thus when people see a paralyzed person such as myself skiing or kayaking they often question their preconceived notions of what life must be like with a disability. When participating in sports I feel like I become an ordinary person, that is my disability is not the first thing people observe. In sharp contrast to the positive reaction I get when participating in a sport, the media does a dreadful job covering adaptive sports. Televised stories about adaptive sports reduces the athletic achievements of disabled athletes to "feel good stories". At issue is not the athletic accomplishment but the fact a person "overcame" their disability. This observations is not original but is important. Why is it important? Disabled people in American society are routinely required to provide explanations about disability. Every person I know who has a disability is asked "What happened to you?" or "How did you become paralyzed?" Leonard Davis and Kenny Fries, gifted disability studies scholars, maintain these rude and intrusive questions set the tone for a particular sort of disability based narrative. In Fries The History of My Shoes and the Evolution of Darwin's Theory has written:
when we speak of disability, we associate it with a story, place it in a narrative. A person became deaf, became blind, was born blind, became quadriplegic. The impairment becomes part of a sequential narrative. By doing this we think of disability as linked to individualism and the individual story. What is actually a physical fact becomes a story with a hero or a victim. Disability becomes divorced from the cultural context, and becomes the problem of the individual, not a category defined by the society. The dialectics of normalcy--for someone to be normal, someone as to be not normal--is kept intact.
This narrative is the reason why I dislike documentaries that focus on adaptive sports and disability in general. Disabled people are just not normal every day people. Their lives are ever so special and they are perceived to be "amazing role models" for others. The focus here is exclusively on the individual and a given physical deficit. It is very easy to gush about adaptive athletes. For instance, David Michaels has stated that "In 30 years of covering Olympic sports, I have never witnessed such a rich tapestry of stories and competition. Every race, every event brings wonder and excitement". If adaptive sports are so exciting, filled with such gut wrenching drama why do they not appear on television? Why is there no reporting of adaptive sporting events in newspapers on a daily basis? Why did no major network broadcast the Paralympics? Why does the NCAA basketball tournament in March dominate the news but no one discusses wheelchair basketball? Why are Paralympic athletes woefully underfunded by the USAOC?
The questions I want answers to are rarely if ever discussed. Answers I want to know would require a radical rethinking of the accepted discourse associated with disability. The point I am trying to emphasize is fundamental. It gets to the heart of the disability rights movement. Like others, I do not want to be defined by my disability. I am not Mr. Wheelchair dude. I am a person with a physical disability. I am a human being. I am a father, son, teacher, writer. All these personal characteristics have nothing to do with disability or my wheelchair. Like I said, I am a human being.
Thursday, November 6, 2008
Election Victory and a Dose of Reality
I am thrilled with the Obama victory. I am equally thrilled with the massive turn out and overwhelming number of votes cast for Obama. For the first time in almost a decade, we have a president who is not only competent but an eloquent speaker. We also have a man in office that understands disability and included a mention of us in his victory speech. This is amazing to me as I was deeply worried that a silent bigotry existed in this country that might affect the election result. After all it was less than 50 tears ago that George Wallace won 17% of the general election based on his support of racial segregation.
Lost among the back slapping and happy news about the Obama victory is what took place in Colorado. I hate to be a harbinger of doom and gloom but I am disturbed by the fact Colorado voters soundly rejected Amendment 51. What was Amendment 51? It was supposed to provide more than 12,000 people with Autism, Down Syndrome, Cerebral Palsy and Mental Retardation with critically needed care by raising the sales tax in the state by 1% That number, 12,000, is how many people in the state are not currently receiving any support or care. These are people that are among among the most vulnerable, those that are reliant on others to support them. What the voters of Colorado have done is send a very clear message: voters stated that they would not spend a penny on every $10 dollars spent to fund services for people with developmental disabilities. Yes, a penny is too much to ask for. An extra penny is too much to spend on support services for 12,000 people with developmental disabilities. This extra penny was also a short term tax--lasting only two years.
Those that supported Amendment 51 such as Marjio Rymer of ARC of Colorado and chairwoman of the coalition to End the Developmental Disability Wait List has been gracious in defeat. She blames the economy for why voters soundly rejected the tax increase. Newspaper reports all echo Rymer's comments about the economic basis for why Amendment 51 was rejected. While the economy is undoubtedly a major factor, I think at a fundamental level the percentage of people that voted against Amendment 51 indicate an inherent bias against people with developmental disabilities exists. Given this, what you do not read about is how woefully underfunded Colorado expenditures are for people with developmental disabilities. According to David Braddock at the University of Colorado expenditures in the state are 73 % below the national average. In rejecting Amendment 51 by a ratio of nearly 2-to-1 the voters have sent a clear message to the disability community: budgets are tight, revenues are decreasing and we do not value your existence. This reality has and will continue to hurt disabled people and their families. Simply put there is no safety net in Colorado for a group of people that desperately need one.
Lost among the back slapping and happy news about the Obama victory is what took place in Colorado. I hate to be a harbinger of doom and gloom but I am disturbed by the fact Colorado voters soundly rejected Amendment 51. What was Amendment 51? It was supposed to provide more than 12,000 people with Autism, Down Syndrome, Cerebral Palsy and Mental Retardation with critically needed care by raising the sales tax in the state by 1% That number, 12,000, is how many people in the state are not currently receiving any support or care. These are people that are among among the most vulnerable, those that are reliant on others to support them. What the voters of Colorado have done is send a very clear message: voters stated that they would not spend a penny on every $10 dollars spent to fund services for people with developmental disabilities. Yes, a penny is too much to ask for. An extra penny is too much to spend on support services for 12,000 people with developmental disabilities. This extra penny was also a short term tax--lasting only two years.
Those that supported Amendment 51 such as Marjio Rymer of ARC of Colorado and chairwoman of the coalition to End the Developmental Disability Wait List has been gracious in defeat. She blames the economy for why voters soundly rejected the tax increase. Newspaper reports all echo Rymer's comments about the economic basis for why Amendment 51 was rejected. While the economy is undoubtedly a major factor, I think at a fundamental level the percentage of people that voted against Amendment 51 indicate an inherent bias against people with developmental disabilities exists. Given this, what you do not read about is how woefully underfunded Colorado expenditures are for people with developmental disabilities. According to David Braddock at the University of Colorado expenditures in the state are 73 % below the national average. In rejecting Amendment 51 by a ratio of nearly 2-to-1 the voters have sent a clear message to the disability community: budgets are tight, revenues are decreasing and we do not value your existence. This reality has and will continue to hurt disabled people and their families. Simply put there is no safety net in Colorado for a group of people that desperately need one.
Monday, November 3, 2008
New York Times and Palin as Potential White House Friend
I look forward to having a fire in my wood burning stove tonight. The first section of the New York Times I will burn to get my fire going will contain an article by Julie Bosman entitled "In Palin, Families of Disabled Children See a Potential White House Friend" (11/3/08). For those unfamiliar with disability issues Bosman's article is misleading. If I did not know better, it would be easy to conclude that every disabled person in America, especially parents of disabled children, support Palin. Bosman wrote that Palin "continues to attract enthusiastic crowds wherever she travels, and invariably among her supporters are those drawn by her advocacy for children with special needs". Bosman also notes that since Palin was named by McCain to be his running mate she has "made Trig, and children like him, the emotional center of her campaign".
I agree Palin has indeed made her son Trig and the issue of "special needs children" the emotional focal point of her campaign. Palin has said many things that strike a chord with disabled people and parents of children with "special needs". As many disabled people know, the biggest obstacles they encounter are social. Thus it is heartening to hear Palin acknowledge the stigma and social isolation that is placed on top of existing physical and cognitive deficits. Sadly, this is as far as Palin has been willing to go, acknowledge bigotry against special needs children exists. Her supposed "policy speech" about disability broke no new ground. Her hastily constructed position on disability pales in comparison to what Obama outlined long ago. Palin's advocacy for special needs children is a myth--it simply is devoid of any basis reality. Palin has not been nor is an advocate for disabled people. What Palin has is plenty of emotion. Sarah Palin hugs children with special needs and her son Trig is often seen being held by his older siblings. We also know that Trig went trick-or-treating with the Palin entourage and was dressed as a baby elephant. All these images are supposed to let us know Palin understands the struggles special needs children encounter.
When I see the imagery the Palin campaign generates two things happen: first, I get angry that people unfamiliar with disability fall for such obvious emotional ploys. Second, I wonder why journalists, professionals who are paid to report the news, rarely if ever refer to the disability rights movement. Disabled people I know all openly mock Palin. There are plenty of blogs, editorials, and protests such as those organized by ADAPT that are ignored by major news outlets--it is as though disabled adults simply do not exist. We disabled adults are not nearly as cute as the little kids Palin is shown hugging. Visuals of adults that use wheelchairs asserting their civil rights are not what others want to see. This is the reality that Palin has conspicuously ignored--those cute disabled kids she likes to be photographed hugging eventually become disabled adults. The reality for disabled adults, especially those with a cognitive deficit, is that support services are grossly inadequate. The fact is support services from day care to job training for people with cognitive deficits is woefully under funded. The lack of funding today has reached draconian levels. The people that suffer the most in my estimation are the very children Palin is seen hugging. Palin is opposed to the Community Choice Act. Palin recently spoke out against Amendment 51 in Colorado where 12,000 disabled people are on waiting lists for supportive services.
I do not get Palin's appeal. The parents of special needs children Palin loves to hug know more than I do about the exclusion of those with Down Syndrome and a host of other cognitive deficits. Why do such parents embrace Palin then? I suspect they come from the traditional base of the Republican Party and will vote for Palin because she is opposed to abortion and a devout Christian. Having a child with Down Syndrome is simply icing on the cake as it is assumed Palin has an inherent understanding of what they experience. This emotional response ignores the social reality of what it is like to be disabled in American society. It also shows exactly how desperate parents of special needs children are and places organizations such as the National Down Syndrome Congress in an awkward position. Politicians that publicly embrace the needs of special needs children are few and far between making it very difficult for them to critique Palin. What worries me the most is what will happen if McCain and Pain win the election. Palin will be portrayed as the caring person in the White House, the disability expert who has a personal connection with special needs children. This highly emotional and visible position will deflect attention from the hard reality of budget cuts for a host of services that could and should empower disabled people. Sadly, this strategy has worked in the campaign and I see no reason to doubt it will work for a McCain administration I hope I will never see.
I agree Palin has indeed made her son Trig and the issue of "special needs children" the emotional focal point of her campaign. Palin has said many things that strike a chord with disabled people and parents of children with "special needs". As many disabled people know, the biggest obstacles they encounter are social. Thus it is heartening to hear Palin acknowledge the stigma and social isolation that is placed on top of existing physical and cognitive deficits. Sadly, this is as far as Palin has been willing to go, acknowledge bigotry against special needs children exists. Her supposed "policy speech" about disability broke no new ground. Her hastily constructed position on disability pales in comparison to what Obama outlined long ago. Palin's advocacy for special needs children is a myth--it simply is devoid of any basis reality. Palin has not been nor is an advocate for disabled people. What Palin has is plenty of emotion. Sarah Palin hugs children with special needs and her son Trig is often seen being held by his older siblings. We also know that Trig went trick-or-treating with the Palin entourage and was dressed as a baby elephant. All these images are supposed to let us know Palin understands the struggles special needs children encounter.
When I see the imagery the Palin campaign generates two things happen: first, I get angry that people unfamiliar with disability fall for such obvious emotional ploys. Second, I wonder why journalists, professionals who are paid to report the news, rarely if ever refer to the disability rights movement. Disabled people I know all openly mock Palin. There are plenty of blogs, editorials, and protests such as those organized by ADAPT that are ignored by major news outlets--it is as though disabled adults simply do not exist. We disabled adults are not nearly as cute as the little kids Palin is shown hugging. Visuals of adults that use wheelchairs asserting their civil rights are not what others want to see. This is the reality that Palin has conspicuously ignored--those cute disabled kids she likes to be photographed hugging eventually become disabled adults. The reality for disabled adults, especially those with a cognitive deficit, is that support services are grossly inadequate. The fact is support services from day care to job training for people with cognitive deficits is woefully under funded. The lack of funding today has reached draconian levels. The people that suffer the most in my estimation are the very children Palin is seen hugging. Palin is opposed to the Community Choice Act. Palin recently spoke out against Amendment 51 in Colorado where 12,000 disabled people are on waiting lists for supportive services.
I do not get Palin's appeal. The parents of special needs children Palin loves to hug know more than I do about the exclusion of those with Down Syndrome and a host of other cognitive deficits. Why do such parents embrace Palin then? I suspect they come from the traditional base of the Republican Party and will vote for Palin because she is opposed to abortion and a devout Christian. Having a child with Down Syndrome is simply icing on the cake as it is assumed Palin has an inherent understanding of what they experience. This emotional response ignores the social reality of what it is like to be disabled in American society. It also shows exactly how desperate parents of special needs children are and places organizations such as the National Down Syndrome Congress in an awkward position. Politicians that publicly embrace the needs of special needs children are few and far between making it very difficult for them to critique Palin. What worries me the most is what will happen if McCain and Pain win the election. Palin will be portrayed as the caring person in the White House, the disability expert who has a personal connection with special needs children. This highly emotional and visible position will deflect attention from the hard reality of budget cuts for a host of services that could and should empower disabled people. Sadly, this strategy has worked in the campaign and I see no reason to doubt it will work for a McCain administration I hope I will never see.
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