Long ago ER "jumped the shark". Once an engaging drama/soap opera, ER is no longer a popular show. NBC really needs to put this show out of its misery. I do not get to see ER often but when I do it is usually dreadful. I was up later than usual last night grading papers and reading a new book. I had ER on as background noise which was a big mistake. I had read that a former character was returning, Dr. Barnett, a double amputee, for a cameo appearance. I was curious as to how ER would portray his return as a disabled character.
Dr. Barnett returned to ER and was in great shape. He is no longer an ER doctor. Instead he is now specializing in rehabilitation medicine, a logical switch given his disability. Dr. Barnett has radically transformed himself. When he was last seen he was a pissed off angry amputee and transformed into a super cripple. I am not sure which gross mischaracterization is worse, obviously subtle nuance is not possible for Dr. Barnett or disabled people. We have just character types: angry or perfect. What is clear is that Dr. Barnett has experienced a radical transformation and possesses advanced super human social skills. No mere mortal, he is a super cripple able to dispense advice to one and all. He is an "amazing man", mature, good looking, and he can not only walk but run. But he does not just run well, he has a high tech pair of prostheses like Oscar Pistorius. So when he goes for a run with the Nila, who is forever unlucky in her love life, along the Chicago Lake shore he not only runs faster than her he leaves her in the dust. The viewer is left to think: wow, those disabled people sure are great. They can run! They can walk! They can work! Gasp, they can fall in love! Holy cow, I sure hope to meet one of those people some day.
The scene that annoyed me the most was not of Dr. Barnett running like Oscar Pistorius. In a heartfelt scene with Nila his former lover before he was an amputee Dr. Barnett comes across as Ghandi-like in terms of sensitivity. He tells Nila he went home to Baton Rouge to mend a broken heart and body. Thanks to high end prostheses he does not appear to be disabled in any way. He tells Nila he has been through a hellish time and during rehab even tried "hurt himself". What is not spoken is that attempting suicide is a "normal" reaction to the prospect of living a life with a profound disability. But Dr. Barnett possess super human ability and if not for an importune knock at her door may have swept Nila off her feet and into her bedroom. This may make good drama but is so devoid of reality even I am virtually speechless. At no point does one get a sense of how hard rehab is, the obstacles amputees face when health insurance often dictate the type of prosthesis they will pay for, nor does one get an idea how expensive (over priced) artificial limbs are. I realize this is TV but even I can think of a few ridiculous ways the real obstacles amputees encounter could be hyped. In failing to portray Dr. Barnett as a normal man with a disability the producers of ER have lots of company. This also makes me wonder when or if it is possible to have a disabled character on TV show whose disability is used illustrate the social impediments to inclusion. This would be great drama and good TV.
Friday, October 31, 2008
Tuesday, October 28, 2008
People with a Disability are Real
I glance at the Wall Street Journal on a daily basis and have a love hate relationship with the newspaper. I am drawn to the sober financial analysis and appalled by the conservative editorials. Given this, I tend to avoid reading the editorials and stick to the financial reporting. Today I was reminded why I dislike the editorial content of the WSJ. I read "Palin Shows How to Transcend the Culture Wars" by William McGurn. I decided to read this editorial because of its subtitle, "A society should be judged by how it treats its weakest members". This was a big mistake as I do not think much of Mr. McGurn's opinions.
I take exception to much of what Mr. McGurn wrote in his editorial. For instance, he maintains that the national press corp has been accommodating to Obama and hostile to Mrs. Palin. McGurn also thinks that Obama has not worked very hard to move past entrenched culture war debates. In Mr. McGurn's opinion this failure on the part of Obama is unfortunate because Palin has given Obama a perfect opportunity. What is this glorious opportunity? Trig Palin apparently "has made the issue of special needs very real for the Palin family. Trig's presence on the campaign trail has also made him real to most Americans". This sort of logic is deeply disturbing to me because it ignores 40 years of legislative initiative and social progress. Between 1968 and 1990 fifty acts of congress were passed designed to protect or enhance the rights of people with a disability. These efforts culminated with the passage of the ADA and yet according to Mr. McGurn it was not until Trig Palin was born that people with "special needs" became real to the Palin family and most Americans. I can assure Mr. McGurn children with special needs are real as are adults with disabilities. We have rights and some people such as myself are not afraid to assert them. The real issue extends well beyond the mere fact disabled people exist. Simply put, the core issue is that disability rights and civil rights are one in the same. This is not a connection your average American makes.
Unfortunately, Mr. McGurn is correct in some ways that disabled people are not real. We remain an invisible minority, isolated economically, politically, and socially. The facts in this regard are grim. The unemployment rate among people with a disability has hovered at 70% for decades. Mass transportation remains difficult or impossible to navigate and the lack of accessible and affordable housing is a significant problem for all disabled people. Mr. McGurn and others should know all this but choose to ignore the real issues. For instance, Mr. McGurn wrote about a family that has a child with Down Syndrome. The birth of this child meant he and the entire family would have a "hard road" in life. What I want to know is why almost 20 years after the ADA was signed into law will this family encounter so many obstacles? Why are the civil rights of disabled people somehow different than all those that can walk?
What truly bothers me about Mr. McGurn's editorial is that he utterly ignored what disability rights advocates have written. He also fails to acknowledge that Obama has been far ahead of the McCain/Palin campaign in terms of disability rights. All this information is readily available and a few quick google searches away. I thus find Mr. McGurn's comments about special needs misleading and, like Palin's speech last week, designed to prompt an emotional response devoid of reality. When one looks at the cold hard facts a different reality emerges, one where the oppression of disabled people is not just common but rampant. This is exactly what the American people do not want to confront: complex issues that demand serious attention. Instead, Mr. McGurn and Palin trot out well-worn and antiquated lines about special needs children that pull on the hearts but not the minds of the American people.
I take exception to much of what Mr. McGurn wrote in his editorial. For instance, he maintains that the national press corp has been accommodating to Obama and hostile to Mrs. Palin. McGurn also thinks that Obama has not worked very hard to move past entrenched culture war debates. In Mr. McGurn's opinion this failure on the part of Obama is unfortunate because Palin has given Obama a perfect opportunity. What is this glorious opportunity? Trig Palin apparently "has made the issue of special needs very real for the Palin family. Trig's presence on the campaign trail has also made him real to most Americans". This sort of logic is deeply disturbing to me because it ignores 40 years of legislative initiative and social progress. Between 1968 and 1990 fifty acts of congress were passed designed to protect or enhance the rights of people with a disability. These efforts culminated with the passage of the ADA and yet according to Mr. McGurn it was not until Trig Palin was born that people with "special needs" became real to the Palin family and most Americans. I can assure Mr. McGurn children with special needs are real as are adults with disabilities. We have rights and some people such as myself are not afraid to assert them. The real issue extends well beyond the mere fact disabled people exist. Simply put, the core issue is that disability rights and civil rights are one in the same. This is not a connection your average American makes.
Unfortunately, Mr. McGurn is correct in some ways that disabled people are not real. We remain an invisible minority, isolated economically, politically, and socially. The facts in this regard are grim. The unemployment rate among people with a disability has hovered at 70% for decades. Mass transportation remains difficult or impossible to navigate and the lack of accessible and affordable housing is a significant problem for all disabled people. Mr. McGurn and others should know all this but choose to ignore the real issues. For instance, Mr. McGurn wrote about a family that has a child with Down Syndrome. The birth of this child meant he and the entire family would have a "hard road" in life. What I want to know is why almost 20 years after the ADA was signed into law will this family encounter so many obstacles? Why are the civil rights of disabled people somehow different than all those that can walk?
What truly bothers me about Mr. McGurn's editorial is that he utterly ignored what disability rights advocates have written. He also fails to acknowledge that Obama has been far ahead of the McCain/Palin campaign in terms of disability rights. All this information is readily available and a few quick google searches away. I thus find Mr. McGurn's comments about special needs misleading and, like Palin's speech last week, designed to prompt an emotional response devoid of reality. When one looks at the cold hard facts a different reality emerges, one where the oppression of disabled people is not just common but rampant. This is exactly what the American people do not want to confront: complex issues that demand serious attention. Instead, Mr. McGurn and Palin trot out well-worn and antiquated lines about special needs children that pull on the hearts but not the minds of the American people.
Monday, October 27, 2008
Power, Courage and Disability
My weekend was a bust. On Saturday our power went out and I was reminded just how dependent I am on electricity. While I coped well without an oven, toilets that flushed, phone, television, and internet service, my son was beside himself. Teenagers are so hooked into electronics and the internet it is almost comical to watch them function without them. I write almost because I too struggled without what has become essential. For instance, I missed watching a stirring comeback win for the NY Rangers. I also could not post a thing about Sarah Palin's first policy speech.
Having had a few extra days to think about Palin's speech concerning "special needs children" I am far from impressed. I did not expect much to come of her speech and sadly I was not disappointed. Other bloggers have commented about the specifics of what Palin said. Special Needs Truth 08, Wonk Room, and Go Becky have parsed the facts as stated by Palin. Two things struck me about Palin's speech: First, it was not really a "policy" speech. Maybe I am too cynical but I thought the aim of the speech was identical to all the other stump speeches Palin has delivered, specifically intended to prompt a sentimental response. Do not misunderstand me: there is nothing wrong with being sentimental, it is part of the campaign rhetoric designed to sway voters. Rather, I hasten to point out that all the sentiment in the world is not going to help "special needs children" or the adults they will become. Absolutely no new ground was broken by Palin and her three proposals, more choice for the parents of children with special needs, fully funding IDEA, and "reform and refocus". Good luck trying with "reform and refocus", a concept that is vague and, after reading her speech three times, I still have no clue what it means. As for giving parents who have a disabled child greater choice, this sounds great. But this choice does not mean disabled children are welcome in either public or private schools. The social and cultural isolation disabled children encounter is not necessarily related to the school they attend but the educators that operate those schools. These educators are under intense pressure to stretch limited resources and disabled children will be perceived by some as an odious financial burden. Finally, IDEA has been under funded since its inception. With McCain's governmental spending freeze I am at a loss as to how more money will be available for this program.
The unoriginal policies advocated by Palin brings me to my second point. There is a cultural divide in this country between those with and those without a disability. This divide exists because American society is unwilling to accept and include disabled people in routine social interaction. That is, the social structure of our society operates under the assumption that disabled people foremost "problem" is a physical or cognitive deficit. This is simply wrong. Based on my experience, the vast majority of disabled people rarely if ever complain about their disability nor do they consider it an impediment to leading a rich and fulfilling life. The "problem" is not one's disability but rather the added prejudice that is placed on top of a given physical or cognitive disability. While no one I know wakes up and thinks they will purposely discriminate against disabled people, this lack of specific intent does not make bigoted actions magically disappear. Thus what I had hoped to hear from Palin was a shift in her unrelenting rhetoric about helping "children with special needs". What I had hoped was that she would reframe her understanding of "special needs children" to a broader civil rights approach to disability. This did not take occur and I wonder if it ever will.
On the day she gave her speech Palin was welcomed by the Down Syndrome Center at Children's Hospital of Pittsburgh. Palin has also spoken to many families who have a child with special needs. Surely an individual has told Palin about the social struggles they have endured. I am equally sure a policy analyst has told her about the difference between a medical and social model of disability. In spite of this, Palin has not budged from her sentimental focus on "special needs children" and totally ignored the existence of disabled adults. I realize change is not easy and this is why I think Palin has failed to connect with a myriad of disability rights groups or garner the support of adults with a disability. At this time she lacks the will and courage to foster real change. By change I mean support the civil rights of all disabled people and focus the issue squarely within a human rights framework. She could do this by talking about the ADA, the UN Convention on the Rights of Persons with Disabilities, oppressive Supreme Court decisions such as the Sutton Trilogy or why the ADA Restoration Act was needed. All this could be done with direct reference to her son Trig who will be affected directly by these issues. In short, what bothered me the most about Palin's speech was that she lost an opportunity to make a fundamental difference in the public debate about the meaning and significance of disability in American society.
Having had a few extra days to think about Palin's speech concerning "special needs children" I am far from impressed. I did not expect much to come of her speech and sadly I was not disappointed. Other bloggers have commented about the specifics of what Palin said. Special Needs Truth 08, Wonk Room, and Go Becky have parsed the facts as stated by Palin. Two things struck me about Palin's speech: First, it was not really a "policy" speech. Maybe I am too cynical but I thought the aim of the speech was identical to all the other stump speeches Palin has delivered, specifically intended to prompt a sentimental response. Do not misunderstand me: there is nothing wrong with being sentimental, it is part of the campaign rhetoric designed to sway voters. Rather, I hasten to point out that all the sentiment in the world is not going to help "special needs children" or the adults they will become. Absolutely no new ground was broken by Palin and her three proposals, more choice for the parents of children with special needs, fully funding IDEA, and "reform and refocus". Good luck trying with "reform and refocus", a concept that is vague and, after reading her speech three times, I still have no clue what it means. As for giving parents who have a disabled child greater choice, this sounds great. But this choice does not mean disabled children are welcome in either public or private schools. The social and cultural isolation disabled children encounter is not necessarily related to the school they attend but the educators that operate those schools. These educators are under intense pressure to stretch limited resources and disabled children will be perceived by some as an odious financial burden. Finally, IDEA has been under funded since its inception. With McCain's governmental spending freeze I am at a loss as to how more money will be available for this program.
The unoriginal policies advocated by Palin brings me to my second point. There is a cultural divide in this country between those with and those without a disability. This divide exists because American society is unwilling to accept and include disabled people in routine social interaction. That is, the social structure of our society operates under the assumption that disabled people foremost "problem" is a physical or cognitive deficit. This is simply wrong. Based on my experience, the vast majority of disabled people rarely if ever complain about their disability nor do they consider it an impediment to leading a rich and fulfilling life. The "problem" is not one's disability but rather the added prejudice that is placed on top of a given physical or cognitive disability. While no one I know wakes up and thinks they will purposely discriminate against disabled people, this lack of specific intent does not make bigoted actions magically disappear. Thus what I had hoped to hear from Palin was a shift in her unrelenting rhetoric about helping "children with special needs". What I had hoped was that she would reframe her understanding of "special needs children" to a broader civil rights approach to disability. This did not take occur and I wonder if it ever will.
On the day she gave her speech Palin was welcomed by the Down Syndrome Center at Children's Hospital of Pittsburgh. Palin has also spoken to many families who have a child with special needs. Surely an individual has told Palin about the social struggles they have endured. I am equally sure a policy analyst has told her about the difference between a medical and social model of disability. In spite of this, Palin has not budged from her sentimental focus on "special needs children" and totally ignored the existence of disabled adults. I realize change is not easy and this is why I think Palin has failed to connect with a myriad of disability rights groups or garner the support of adults with a disability. At this time she lacks the will and courage to foster real change. By change I mean support the civil rights of all disabled people and focus the issue squarely within a human rights framework. She could do this by talking about the ADA, the UN Convention on the Rights of Persons with Disabilities, oppressive Supreme Court decisions such as the Sutton Trilogy or why the ADA Restoration Act was needed. All this could be done with direct reference to her son Trig who will be affected directly by these issues. In short, what bothered me the most about Palin's speech was that she lost an opportunity to make a fundamental difference in the public debate about the meaning and significance of disability in American society.
Friday, October 24, 2008
Parents and Disability
This has been a bad week. It has been three years since my father died. I will never forget the night he died and still mourn his death. Every night before I go to sleep the last thing I look at is a picture of him holding the reigns of West by West, a stakes winning race horse he owned. The look in his eyes is a mix of pride and happiness. This is how I remember him--a proud dignified man that could accomplish anything he put his mind to. His inner strength, discipline, and will power was inspiring and as a child more than intimidating. I both loved and feared my father. By fear I mean I always strived to meet and exceed his expectations because I did not want to disappoint him. I never felt pressured and in looking back on my childhood cannot imagine how a human could have been a better father. Amazingly, I can say the same thing of my mother, she too was an ideal parent. The older I get the more I realize how lucky I am to write this. Such a sentiment makes me shudder about what could have been, that is what my life might have been like had they not treated me as an equal to my siblings that could walk. Perhaps this is why I have been carefully following the news reports in Britain about the death of Daniel James. Why, I wonder, did James parents not react to disability the way my parents did.
Last night I had dinner with my mother and we spent more time that usual telling old war stories. By war stories, I refer to hard times I had growing up with profound neurological deficits during a medical era that did not include CAT Scans and MRI machines. While I recall far too many hospitalizations and painful procedures what I remember the most is my parents determination that I would receive the best medical care. In return, I was was expected to keep up with school work and they reminded me that just because I was sick did not mean I would be treated one iota different. My parents reminded me that I may have had physical deficits but my mind worked perfectly fine. I knew as they did a lot of kids were in much worse shape than me. The underlying message was that I should suck it up and move on with life. Pity was not in their realm of understanding. They told me and my siblings that in the Peace family no one gives up and all are treated equally. By extension, we were expected to stick up for one another and ourselves. If we encountered trouble beyond our ability we were expected to seek their help.
My parents tough love and belief in my innate ability was a life lesson I wish Mr. James parents had bestowed upon their son. When I told my mom about what Mr. James parents did, assisted in his suicide she visibly shivered. Her response reminded me of one of an encounter I had when I was first disabled. I recall going to high-school after I began using a wheelchair. I had not been to school for a long time and I was extremely anxious about returning. I was a senior and drove myself to school where I got my first lesson about the lack of wheelchair access. There was only one accessible entrance and handicapped parking did not exist. I moaned and groaned about this when I got home and my mother got increasingly short tempered as I spoke. She told me to stop complaining and do something about the lack of wheelchair access. I wondered what I could do as a student? She told me that when I drove to school he next day I should park in the principals spot since the school had no handicapped parking. If the principal had a problem with that, he should call her. I loved the idea, parked in the principals spot and during my first period the principal came into my class looking for me. He wanted to know why I parked in his spot. He was not amused and my peers looked at me in shock. With resolve I replied there was no handicapped parking in any school lot and only one accessible entrance. I did not know what else to do except take his spot since I had no where else to park. Satisfied with my answer, the principal left the classroom. The next day two handicapped parking spots were next to the principals space in the lot.
I learned two valuable lessons thanks to the seemingly minor experience described above. First, I had the total support of my parents. Second, my wheelchair did not, to borrow the words of Mr. James, make me a second class citizen. Thanks to my parents, I knew that I was no different than any other person that could walk. They expected me to defend my human rights. Thus when I think of Mr. James and his parents I feel deeply depressed. Why did Mr. James and his parents accepted society's overwhelmingly negative view of disability. Why I wonder could they not support their son's inherent humanity? Is walking really that important? I condemn the parents decision to have a hand in their son's suicide. It was a cowardly and selfish act. Because of their actions Mr James suicide is now more than a family tragedy it is a social statement. They have sent a clear message to all those that read about their son: the life of people who are disabled is not valued. Death is preferable to disability. This is a gross violation of the human rights of disabled people in England and beyond. My mother and father knew this 30 years ago. Too bad the rest of society has yet to acknowledge this fact.
Last night I had dinner with my mother and we spent more time that usual telling old war stories. By war stories, I refer to hard times I had growing up with profound neurological deficits during a medical era that did not include CAT Scans and MRI machines. While I recall far too many hospitalizations and painful procedures what I remember the most is my parents determination that I would receive the best medical care. In return, I was was expected to keep up with school work and they reminded me that just because I was sick did not mean I would be treated one iota different. My parents reminded me that I may have had physical deficits but my mind worked perfectly fine. I knew as they did a lot of kids were in much worse shape than me. The underlying message was that I should suck it up and move on with life. Pity was not in their realm of understanding. They told me and my siblings that in the Peace family no one gives up and all are treated equally. By extension, we were expected to stick up for one another and ourselves. If we encountered trouble beyond our ability we were expected to seek their help.
My parents tough love and belief in my innate ability was a life lesson I wish Mr. James parents had bestowed upon their son. When I told my mom about what Mr. James parents did, assisted in his suicide she visibly shivered. Her response reminded me of one of an encounter I had when I was first disabled. I recall going to high-school after I began using a wheelchair. I had not been to school for a long time and I was extremely anxious about returning. I was a senior and drove myself to school where I got my first lesson about the lack of wheelchair access. There was only one accessible entrance and handicapped parking did not exist. I moaned and groaned about this when I got home and my mother got increasingly short tempered as I spoke. She told me to stop complaining and do something about the lack of wheelchair access. I wondered what I could do as a student? She told me that when I drove to school he next day I should park in the principals spot since the school had no handicapped parking. If the principal had a problem with that, he should call her. I loved the idea, parked in the principals spot and during my first period the principal came into my class looking for me. He wanted to know why I parked in his spot. He was not amused and my peers looked at me in shock. With resolve I replied there was no handicapped parking in any school lot and only one accessible entrance. I did not know what else to do except take his spot since I had no where else to park. Satisfied with my answer, the principal left the classroom. The next day two handicapped parking spots were next to the principals space in the lot.
I learned two valuable lessons thanks to the seemingly minor experience described above. First, I had the total support of my parents. Second, my wheelchair did not, to borrow the words of Mr. James, make me a second class citizen. Thanks to my parents, I knew that I was no different than any other person that could walk. They expected me to defend my human rights. Thus when I think of Mr. James and his parents I feel deeply depressed. Why did Mr. James and his parents accepted society's overwhelmingly negative view of disability. Why I wonder could they not support their son's inherent humanity? Is walking really that important? I condemn the parents decision to have a hand in their son's suicide. It was a cowardly and selfish act. Because of their actions Mr James suicide is now more than a family tragedy it is a social statement. They have sent a clear message to all those that read about their son: the life of people who are disabled is not valued. Death is preferable to disability. This is a gross violation of the human rights of disabled people in England and beyond. My mother and father knew this 30 years ago. Too bad the rest of society has yet to acknowledge this fact.
Thursday, October 23, 2008
Palin's Advocacy for Special Needs Children Needs Work
I am weary of Palin's rhetoric that she is an advocate for children with special needs. She has repeated this so many times that I think her statement has become a political mantra. Perhaps Palin thinks if she says "I am an advocate for special needs children" in every speech this will become a fact. I sincerely hope those unfamiliar with disability rights are not naive enough to accept Palin's words. I for one see through this smoke screen that has no basis in reality. Palin's advocacy for "special needs children" is a emotional ploy designed to sway voters and create the illusion that she cares about people like her son Trig. The reality is she is not in any way shape or form an advocate of special needs children or disabled people. Her action not her words demonstrate this.
When Palin was in Colorado early this week she spoke out against Amendment 51. Amendment 51 seeks to raise the sales tax by one cent on every $10 spent in the next two years. The tax is earmarked to help the 12,000 special needs children and adults who are on waiting lists to receive state service such as nursing care and job training. The money is specifically designed to help people like her son Trig and others with cognitive disabilities. Why is Palin against Amendment 51? She thinks "there's got to be an alternative to raising taxes. It's a matter of prioritizing the dollars already there in government". Does this mean the money already exists to help special needs children? If so, how does Palin intend to change existing priorities so children like her son Trig can enjoy the same civil rights as others? This is pretty hard to do when the McCain/Palin campaign does not have a platform that outlines how they would help special needs children and disabled adults. The bottom line, the gritty reality, is that Palin's words and actions do not correspond. She cares about special needs children in name only. Palin blew a chance this week to be the "advocate" she says she is. Maybe I am jaded from living in a heavily taxed state like New York but I would pay the modest sales tax increase for two years knowing it would help 12,000 people that desperately need state support. This is a matter of money and the human rights.
When Palin was in Colorado early this week she spoke out against Amendment 51. Amendment 51 seeks to raise the sales tax by one cent on every $10 spent in the next two years. The tax is earmarked to help the 12,000 special needs children and adults who are on waiting lists to receive state service such as nursing care and job training. The money is specifically designed to help people like her son Trig and others with cognitive disabilities. Why is Palin against Amendment 51? She thinks "there's got to be an alternative to raising taxes. It's a matter of prioritizing the dollars already there in government". Does this mean the money already exists to help special needs children? If so, how does Palin intend to change existing priorities so children like her son Trig can enjoy the same civil rights as others? This is pretty hard to do when the McCain/Palin campaign does not have a platform that outlines how they would help special needs children and disabled adults. The bottom line, the gritty reality, is that Palin's words and actions do not correspond. She cares about special needs children in name only. Palin blew a chance this week to be the "advocate" she says she is. Maybe I am jaded from living in a heavily taxed state like New York but I would pay the modest sales tax increase for two years knowing it would help 12,000 people that desperately need state support. This is a matter of money and the human rights.
Wednesday, October 22, 2008
Daniel James and Fear of Disability
Mainstream media outlets in Britain continue to defend James decision to commit suicide. Euthanasia advocates are rallying around Mr. James parents, characterizing them as selfless angels who gave their son an escape from his body that was a prison. There is no doubt that Mr. James and his parents have the overwhelming support of the general public. I find this frightening and confusing.
I am scared and confused because I want to know what other people will be hailed or encouraged to kill themselves. Is it okay for all people with a spinal cord injury to commit suicide? If not, where does one draw the line? Is there a particular level of SCI that is unacceptable? What about people with MS or ALS? At what point is it acceptable for them to end their life? What about elderly people with dementia? Is their life worth living? Who gets to make these decisions? Does a disabled person get to have a say in whether they live or die? These question have insidious implications that affect all humans. James death has sent a message to disabled people and the general public--your life is not worth living. No one questioned why James felt like a "second class citizen", this social construct was accepted without thought. This makes me very worried and brings me back to one of the very first posts I made on this blog. I worry and am afraid to go to the hospital. What if a doctor I have never met thinks life with a spinal cord injury is not worth living. This doctor may have just read about the parents of a person with an identical injury that committed suicide. Perhaps this doctors assumes I consider my body a prison, my life nothing short of miserable. Given these variables, will I receive the same medical care as a person that walked in the door to the emergency room? In sincerely doubt it. And this is in part why the James case is so scary. While I do not want to judge Mr. James and his parents, I condemn the implications of their actions. I have a right to live a rich and full life as did Mr. James. I mourn Mr. Jones death and will continue to rail against the society that made him feel as though his life was not worth living.
I am scared and confused because I want to know what other people will be hailed or encouraged to kill themselves. Is it okay for all people with a spinal cord injury to commit suicide? If not, where does one draw the line? Is there a particular level of SCI that is unacceptable? What about people with MS or ALS? At what point is it acceptable for them to end their life? What about elderly people with dementia? Is their life worth living? Who gets to make these decisions? Does a disabled person get to have a say in whether they live or die? These question have insidious implications that affect all humans. James death has sent a message to disabled people and the general public--your life is not worth living. No one questioned why James felt like a "second class citizen", this social construct was accepted without thought. This makes me very worried and brings me back to one of the very first posts I made on this blog. I worry and am afraid to go to the hospital. What if a doctor I have never met thinks life with a spinal cord injury is not worth living. This doctor may have just read about the parents of a person with an identical injury that committed suicide. Perhaps this doctors assumes I consider my body a prison, my life nothing short of miserable. Given these variables, will I receive the same medical care as a person that walked in the door to the emergency room? In sincerely doubt it. And this is in part why the James case is so scary. While I do not want to judge Mr. James and his parents, I condemn the implications of their actions. I have a right to live a rich and full life as did Mr. James. I mourn Mr. Jones death and will continue to rail against the society that made him feel as though his life was not worth living.
Tuesday, October 21, 2008
Daniel James in the UK News
The death of Daniel Jones I wrote about yesterday has been officially sent to the Crown Prosecution Service Complex Casework Unit. This special unit deals with high-profile complex crimes. A CPC spokesman has stated that "The head of the Complex Casework Unite will review the police file and then make a decision on whether to proceed with a prosecution or not".
I have no idea whether Mr. James parents will be prosecuted. Frankly, I do not care. What I am interested in is the debate that is now raging in newspapers, magazines, and blogs such as this one. What I have been struck by is the overwhelming negative description of disabled bodies that appear in newspaper accounts. I have given up trying to count the number of times I have read "wheelchair-bound", ""wrecked body", "helplessly crippled", and other derogatory phrases. It is abundantly obvious that in Britain the disabled body is not valued and the lives of disabled people are considered markedly inferior. In fact, a common theme in some news reports are that death is preferable when compared to life with a disability. This enabled some to portray Mr. James parents as martyrs or saints. For example in the Herald Colette Douglas Home wrote a story entitled "Was Daniel's Death the Final Act of Parental Love?". She questioned how she would react if her son had a similar injury to Daniel James. "How would his father and I have coped if he'd been condemned to immobility at the peak of fitness?" Homes went on to to state that "sporting men of 23 are like unbroken colts. They are vital, forceful personalities; physical creatures with boundless energy. Their heads are filled with dreams and ambitions". At no point in my life have I ever felt "condemned" by my inability to walk or move my legs. The vitality that Homes describes has more to do with youthful enthusiasm than sporting life. Indeed, it appears as though only physically fit young men are capable of dreaming big and possess boundless energy. This outlook she assumes is beyond the ability and imagination of disabled people.
The most disturbing aspect of the news reports about Mr. James death is the idea that suicidal thoughts and disability go hand in hand. That is it is perfectly reasonable for disabled people to consider suicide. In fact, many reports I read characterized Mr. James attempts at suicide a "normal" reaction to spinal cord injury. For instance, Mr. James mother is quoted as postulating if one "had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied on 24 hour care for every basic need and they had asked for her support what would they have done?" Placed in Mrs. James situation I would have been anguished yet suicide would not have been within my realm of choices for my son. Mr. James was injured just 18 months and was not terminally ill. He had everything to live for that any other 23 year old looks forward to who can walk. Again, this line of reasoning is based on the assumption death is preferable to life as a disabled person. Let's try changing the variables and see if thoughts of suicide are considered "normal": What if a child was clinically depressed, bipolar, or raped? Would suicide be considered an option? Not a chance, in fact the parents that suggest such a course of action would likely end up in jail.
Why is death preferable to disability? I have not a clue as to why this line of reasoning is so widely accepted. Perhaps it is easier and cheaper than insuring social services exist that enable disabled people to live a rich and full life. Death is after all a definitive "solution". What I keep returning to is not the discussion about the parents role in their son's death but the social failure that enabled it to take place. This social failure will not garner any headlines, prompt people to get into a fierce debate about quality of life issues, or make people turn on the TV news. The only way to change the social perception of disability and prevent other deaths such as Mr. James is for society to accept and incorporate disabled people into mainstream society. For that to happen, accessible and affordable homes and mass transportations must exist. Barriers to inclusion in the work force and in schools for disabled people must be stopped. In short, disability must become ordinary, a part of life for some but certainly not all. When I can leave my own front door and not worry about being accosted socially than I will know equality exists. Until all disabled people share that same sense of equality needless deaths like Mr. James will continue. This is nothing more and nothing less than a human rights issue. This is not sexy but the reality that I know, a knowledge based on dealing with disability based prejudice for the last thirty years.
I have no idea whether Mr. James parents will be prosecuted. Frankly, I do not care. What I am interested in is the debate that is now raging in newspapers, magazines, and blogs such as this one. What I have been struck by is the overwhelming negative description of disabled bodies that appear in newspaper accounts. I have given up trying to count the number of times I have read "wheelchair-bound", ""wrecked body", "helplessly crippled", and other derogatory phrases. It is abundantly obvious that in Britain the disabled body is not valued and the lives of disabled people are considered markedly inferior. In fact, a common theme in some news reports are that death is preferable when compared to life with a disability. This enabled some to portray Mr. James parents as martyrs or saints. For example in the Herald Colette Douglas Home wrote a story entitled "Was Daniel's Death the Final Act of Parental Love?". She questioned how she would react if her son had a similar injury to Daniel James. "How would his father and I have coped if he'd been condemned to immobility at the peak of fitness?" Homes went on to to state that "sporting men of 23 are like unbroken colts. They are vital, forceful personalities; physical creatures with boundless energy. Their heads are filled with dreams and ambitions". At no point in my life have I ever felt "condemned" by my inability to walk or move my legs. The vitality that Homes describes has more to do with youthful enthusiasm than sporting life. Indeed, it appears as though only physically fit young men are capable of dreaming big and possess boundless energy. This outlook she assumes is beyond the ability and imagination of disabled people.
The most disturbing aspect of the news reports about Mr. James death is the idea that suicidal thoughts and disability go hand in hand. That is it is perfectly reasonable for disabled people to consider suicide. In fact, many reports I read characterized Mr. James attempts at suicide a "normal" reaction to spinal cord injury. For instance, Mr. James mother is quoted as postulating if one "had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied on 24 hour care for every basic need and they had asked for her support what would they have done?" Placed in Mrs. James situation I would have been anguished yet suicide would not have been within my realm of choices for my son. Mr. James was injured just 18 months and was not terminally ill. He had everything to live for that any other 23 year old looks forward to who can walk. Again, this line of reasoning is based on the assumption death is preferable to life as a disabled person. Let's try changing the variables and see if thoughts of suicide are considered "normal": What if a child was clinically depressed, bipolar, or raped? Would suicide be considered an option? Not a chance, in fact the parents that suggest such a course of action would likely end up in jail.
Why is death preferable to disability? I have not a clue as to why this line of reasoning is so widely accepted. Perhaps it is easier and cheaper than insuring social services exist that enable disabled people to live a rich and full life. Death is after all a definitive "solution". What I keep returning to is not the discussion about the parents role in their son's death but the social failure that enabled it to take place. This social failure will not garner any headlines, prompt people to get into a fierce debate about quality of life issues, or make people turn on the TV news. The only way to change the social perception of disability and prevent other deaths such as Mr. James is for society to accept and incorporate disabled people into mainstream society. For that to happen, accessible and affordable homes and mass transportations must exist. Barriers to inclusion in the work force and in schools for disabled people must be stopped. In short, disability must become ordinary, a part of life for some but certainly not all. When I can leave my own front door and not worry about being accosted socially than I will know equality exists. Until all disabled people share that same sense of equality needless deaths like Mr. James will continue. This is nothing more and nothing less than a human rights issue. This is not sexy but the reality that I know, a knowledge based on dealing with disability based prejudice for the last thirty years.
McCain and Disability Policy
In recent posts I have referred to the blog Special Needs Truth 08. Although an obviously partisan site, the information and links provided are always interesting. I am in agreement with much of what I read at Special Needs Truth 08. The posts are direct and highlight the difference between what McCain says and what he actually does. Regardless of one's political viewpoint, I was stunned by the following post: McCain and Obama were invited to participate in a forum about disability in Athens, Ohio. Obama sent Kareem Dale, National Disability Vote Director to participate in the forum. Who did McCain send? No one, yes, you read that correctly, McCain sent no one! MCain did have Donna M. Jones, National Coordinator of the Americans with Disabilities for McCain Coalition, send an email. Special Needs Truth 08 quotes from Jones email:
"The McCain campaign does not have a vetted disability policy to release at this time. I also do not have any further information on when we might be releasing a platform discussing the senator's stance on issues that relate to people with disabilities. I understand that in this contentious political season, the needs of people with disabilities must be addressed as part of the policy conversation. It is my hope that we will be able to release a vetted policy from Senator McCain in the near future. That being said, I will not be able to send a surrogate to discuss a policy Senator McCain has not approved."
Even if I wanted to, I have no clue how to put a positive spin on the above statement. McCain has no vetted disability policy? This comes from the man whose running mate characterizes herself as an advocate for "special needs children"? How can one advocate for the needs of "special children" an disabled people in general if there is no disability policy? I did not need further reasons to know Obama is the clear choice for disabled voters. The total lack of a coherent disability policy only added to an already long list of reservations about McCain. But beyond my reservations I am increasingly convinced that there is a profound difference between what McCain says and reality. It is easy to say "I support special needs kids" or "Palin has a bond with special needs families". These are great sound bites but where is the substance and evidence these words will be turned into action? Now I know a plan for action does not exist. I did not state this, McCain's own people did! Gosh, don't you just love politics.
"The McCain campaign does not have a vetted disability policy to release at this time. I also do not have any further information on when we might be releasing a platform discussing the senator's stance on issues that relate to people with disabilities. I understand that in this contentious political season, the needs of people with disabilities must be addressed as part of the policy conversation. It is my hope that we will be able to release a vetted policy from Senator McCain in the near future. That being said, I will not be able to send a surrogate to discuss a policy Senator McCain has not approved."
Even if I wanted to, I have no clue how to put a positive spin on the above statement. McCain has no vetted disability policy? This comes from the man whose running mate characterizes herself as an advocate for "special needs children"? How can one advocate for the needs of "special children" an disabled people in general if there is no disability policy? I did not need further reasons to know Obama is the clear choice for disabled voters. The total lack of a coherent disability policy only added to an already long list of reservations about McCain. But beyond my reservations I am increasingly convinced that there is a profound difference between what McCain says and reality. It is easy to say "I support special needs kids" or "Palin has a bond with special needs families". These are great sound bites but where is the substance and evidence these words will be turned into action? Now I know a plan for action does not exist. I did not state this, McCain's own people did! Gosh, don't you just love politics.
Monday, October 20, 2008
Life Worth Living for Second Class Citizens
Over the weekend I carefully followed news reports about Dan James. I doubt readers in America know who Dan James was or the circumstances that surround his death. Mr. James, 23 years old, was by all accounts a gifted British rugby prospect who expected to become a professional player. Mr. James' ambition to become a professional rugby player ended last March when he was paralyzed during a training session with the Nuneaton Rugby Club. Mr. James struggled to cope with his paralysis and attempted to commit suicide several times. Last month Mr. James persuaded his parents to bring him to Dignitas, a Swiss clinic founded by Ludwig Minelli. Dignitas is a non-profit clinic that takes advantage of "liberal" Swiss law to assist those that want to end their life. Mr. James died at Dignitas last month. His parents were the subject of an investigation. The results of the investigation have not been released.
Mr. James death is a social tragedy, a dark statement on how the life of those who are disabled are perceived. The media coverage in Britain is about what I would expect. The beginning point of every article emphasized two points: first, life is exceptionally difficult for paralyzed people. Second, over 100 Briton have sought to end their life at the Swiss clinic and this facts highlights the debate over the ethics of assisted suicide.
As for the difficulty associated with a life and disability, it is indeed hard. But what all the articles I read in British newspapers failed to acknowledge was the problems disabled people face are largely social. The overwhelming negative view of disability was simply a given, the starting point for a debate about how do you choose whose life is worth living. For instance, Mr James' parents only statement about the death of their son was that "it was an extremely sad loss for his family, friends and all those that care for him but no doubt a welcome relief from the prison he felt his body had become and the day-to-day fear and loathing of his living existence". They went on to state that their son "was not prepared to live a second class existence". Where, I want to know, did this self hatred emerge? I also want to know why is it a given that people with disabilities are "second class citizens"? While no one wants to be paralyzed, myself included, I find it hard to fathom why Mr. James could not move on with life. Perhaps he took to heart the notion that paralysis leads to a grim life, one that does not include a family, sex, and athletic achievement. Perhaps he accepted the views of Libby Purves who wants to place the blame on the disability rights movement. In an article entitled "Its Time for a Clear Policy on Euthanasia" (Timesonline, October 20) Ms. Purves suggested a "side effect" of disability rights vocabulary was that "It may blind us to the utter visceral awfulness of confronting a major disability, especially when young. As civilized people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair, yet the flinch and the fear are still there inside". Ms. Purves may be right, perhaps simple minded people will indeed flinch but civilized beings will reject such a primal or thoughtless response. But enlightenment is not within Ms. Purves realm as she goes on to write "we should not prattle about fulfilling lives. Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralyzed. No amount of pious writing about the Disability Community should blind us to that". Yikes, these words are sobering to me. If this is an indication of what people think the disability rights community has made little if any progress.
As for the debate about assisted suicide, I do not want to enter that discussion on the defensive nor do I want to see Mr. James death used by those who support or oppose assisted suicide. This sort of debate misses the point and enables people such as Edward Turner, an advocate for "assisted dying" whose mother ended her life at Dignitas, to argue Mr. James death "breaks new ground". From my viewpoint, the only new ground broken was at Mr. James grave. Disability based bigotry has been present for decades and has crushed the lives, hopes, dreams, and ambitions of an unknown number of people. If Mr. James is to be made out to be a victim it is a victimhood that is directly related to the innate prejudice against disabled people. I for one do not want to listen to Mr. Turner's distinction between "assisted dying" and "assisted suicide". That debate has nothing to do with Mr. James, the difference between depression and terminal illness or end of life issues. The fact is Mr. James would be alive today if the stigma associated with disability was forcefully rejected by all people instead of accepted as a societal norm. Thus the assisted suicide debate in this case is a smoke screen for the real problem Mr, James, myself, and other disabled people encounter. Sadly, the issue of disability rights will most likely be totally ignored in Britain and headlines will focus on the sensational aspects of Mr. James death. This is particularly unfortunate as I thought great progress in disability rights has taken place in Britain.
Mr. James death is a social tragedy, a dark statement on how the life of those who are disabled are perceived. The media coverage in Britain is about what I would expect. The beginning point of every article emphasized two points: first, life is exceptionally difficult for paralyzed people. Second, over 100 Briton have sought to end their life at the Swiss clinic and this facts highlights the debate over the ethics of assisted suicide.
As for the difficulty associated with a life and disability, it is indeed hard. But what all the articles I read in British newspapers failed to acknowledge was the problems disabled people face are largely social. The overwhelming negative view of disability was simply a given, the starting point for a debate about how do you choose whose life is worth living. For instance, Mr James' parents only statement about the death of their son was that "it was an extremely sad loss for his family, friends and all those that care for him but no doubt a welcome relief from the prison he felt his body had become and the day-to-day fear and loathing of his living existence". They went on to state that their son "was not prepared to live a second class existence". Where, I want to know, did this self hatred emerge? I also want to know why is it a given that people with disabilities are "second class citizens"? While no one wants to be paralyzed, myself included, I find it hard to fathom why Mr. James could not move on with life. Perhaps he took to heart the notion that paralysis leads to a grim life, one that does not include a family, sex, and athletic achievement. Perhaps he accepted the views of Libby Purves who wants to place the blame on the disability rights movement. In an article entitled "Its Time for a Clear Policy on Euthanasia" (Timesonline, October 20) Ms. Purves suggested a "side effect" of disability rights vocabulary was that "It may blind us to the utter visceral awfulness of confronting a major disability, especially when young. As civilized people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair, yet the flinch and the fear are still there inside". Ms. Purves may be right, perhaps simple minded people will indeed flinch but civilized beings will reject such a primal or thoughtless response. But enlightenment is not within Ms. Purves realm as she goes on to write "we should not prattle about fulfilling lives. Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralyzed. No amount of pious writing about the Disability Community should blind us to that". Yikes, these words are sobering to me. If this is an indication of what people think the disability rights community has made little if any progress.
As for the debate about assisted suicide, I do not want to enter that discussion on the defensive nor do I want to see Mr. James death used by those who support or oppose assisted suicide. This sort of debate misses the point and enables people such as Edward Turner, an advocate for "assisted dying" whose mother ended her life at Dignitas, to argue Mr. James death "breaks new ground". From my viewpoint, the only new ground broken was at Mr. James grave. Disability based bigotry has been present for decades and has crushed the lives, hopes, dreams, and ambitions of an unknown number of people. If Mr. James is to be made out to be a victim it is a victimhood that is directly related to the innate prejudice against disabled people. I for one do not want to listen to Mr. Turner's distinction between "assisted dying" and "assisted suicide". That debate has nothing to do with Mr. James, the difference between depression and terminal illness or end of life issues. The fact is Mr. James would be alive today if the stigma associated with disability was forcefully rejected by all people instead of accepted as a societal norm. Thus the assisted suicide debate in this case is a smoke screen for the real problem Mr, James, myself, and other disabled people encounter. Sadly, the issue of disability rights will most likely be totally ignored in Britain and headlines will focus on the sensational aspects of Mr. James death. This is particularly unfortunate as I thought great progress in disability rights has taken place in Britain.
Saturday, October 18, 2008
Passion and Politics
I just read an outstanding commentary about Sarah Palin by Christy Everett entitled "I know nothing about special needs" at Parents.com (see Following Elias, The Boy that Could Fly). I approach disability rights from a cultural viewpoint and try to maintain an even temper despite the fact I am directly affected by disability based discrimination. I try to sway people with facts and a firm civil rights agenda. This approach does not work all the time but it suits my personality and background as an anthropologist. Yet I enjoy reading the work of others who write in a far more emotional manner. Perhaps this is why I often read blogs written by parents who have a child with "special needs", a term I detest that, thanks to Palin, is being bandied about in the Presidential campaign. I was very moved when I read the following written by a parent of a boy with multiple disabilities:
"For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.
Does he know anyone with special needs?
Because surely they would know more about living with disabilities than the people who love them.
To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…
…the list goes on."
I love the last paragraph and phrase about the barriers of an able-bodied world. I know far too much about those barriers. I know barriers are needless, overwhelming and sometimes oppressive. On bad days, I truly struggle to leave my home. I do not want to encounter someone who thinks I am public property and suggests that if I prayed really hard could walk again. I do not want to have a stranger tell me it is "amazing" the way I get my wheelchair in and out of my car. What I want is illusive, the ability to blend in and be, well, ordinary. Social equality is simply not something that I experience often. I am different and in many ways proud of my difference, that is proud to be disabled. However, on those bad days my difference, my disability, feels like a chain pulling me down into an abyss from which I fear I will not emerge. It is on these bad days that I force myself to think not of myself but of all those other people with a disability that are not as lucky as I am. I live in a nice house, have a large and supportive family, am highly educated, and have a son I love very much. I thus force myself to move forward for others who find themselves stuck in a nursing home, are unemployed, alone, or simply not able to deal with social oppression. If I give up, if I accept the stigma associated with disability I fear it will create a domino affect in which one disabled person after another will fall. I will simply not let this happen.
"For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community.
Does he know anyone with special needs?
Because surely they would know more about living with disabilities than the people who love them.
To claim that a new mother of a child with Down syndrome knows more about special needs than any other American is an insult to the hundreds of thousands of people who every day face the barriers of an able-bodied world. Or who despite cognitive differences go on to earn a Phd. Or who play ice hockey without full sight or compose music they can’t hear. Or…
…the list goes on."
I love the last paragraph and phrase about the barriers of an able-bodied world. I know far too much about those barriers. I know barriers are needless, overwhelming and sometimes oppressive. On bad days, I truly struggle to leave my home. I do not want to encounter someone who thinks I am public property and suggests that if I prayed really hard could walk again. I do not want to have a stranger tell me it is "amazing" the way I get my wheelchair in and out of my car. What I want is illusive, the ability to blend in and be, well, ordinary. Social equality is simply not something that I experience often. I am different and in many ways proud of my difference, that is proud to be disabled. However, on those bad days my difference, my disability, feels like a chain pulling me down into an abyss from which I fear I will not emerge. It is on these bad days that I force myself to think not of myself but of all those other people with a disability that are not as lucky as I am. I live in a nice house, have a large and supportive family, am highly educated, and have a son I love very much. I thus force myself to move forward for others who find themselves stuck in a nursing home, are unemployed, alone, or simply not able to deal with social oppression. If I give up, if I accept the stigma associated with disability I fear it will create a domino affect in which one disabled person after another will fall. I will simply not let this happen.
Thursday, October 16, 2008
A Solid Victory for Obama on Disability
I did not get to see the entire Presidential debate last night because I was teaching. However, I did listen to most of the debate on my drive home. When Bob Schieffer asked about the qualifications of Palin and Biden as Vice-President I eagerly awaited an answer. I hoped that for the first time a substantive debate about disability might come up. Although not substantive, the exchange about disability between Obama and McCain solidified in my mind why Obama is the clear choice in the election.
The transcript of the debate is widely available and it is worth quoting some of it. In his answer, McCain fell back on well worn cliches. "She'll be my partner. She understands reform. And, by the way, she also understands special needs families. She understands that autism is on the rise, that we've got to reach out to these families, and help them, and give them the help they need as they raise these very special children. She understands that better than almost any American that I know. I'm proud of her".
As many have pointed out, Palin is not an expert on autism. She does have a nephew who has autism and all know her son Trig has Down Syndrome. This limited personal connection may give her an "understanding" of what is involved in raising children with "special needs" but that does not mean she has any added insight or expertise. This may come with time but to my knowledge her practical experience with disability is limited to caring for her son who is less than a year old. It appears to me she has made a connection with parents of children that have Down Syndrome but this has not translated into action. Indeed, the skeptic could postulate that Palin is exploiting these parents for photo opportunities that tug at the heart strings of those unfamiliar with disability. I also get a sense that Palin has not truly embraced or begun to get a nuanced understanding of the disability community. Again, this may come with time but as of today her failure to act, to change the rhetoric coming out of the McCain cmpaign and offer specific examples of what she would do to enhance the lives of children with special needs makes me question what she says.
The passage in the debate that is of great interest to me did not come from McCain. It was Obama's reply to the above quote that was dignified, polite, and raised the bar above partisan politics. Obama could have lobbed a nasty shot at Palin and the mean spirited comments she has made recently but graciously conceded she was a capable politician, one that has energized the Republican base. I give Obama credit for being polite, I doubt I could have held my tongue. Regardless, this statement by Obama stood out:
"I do want to just point out that autism, for example, or other special needs, will require some additional funding, if we're going to get serious in terms of research. That is something that every family that advocates on the behalf of disabled children talks about. And if we have an across the board spending freeze, we're not going to be able to do it".
Here we have a distinct and profound difference between Obama and McCain. The McCain campaign through Palin pays lip service to special needs children but offers no change in the draconian funding of programs for the people they supposedly care about. Furthermore, McCain and Palin have said nothing about the needs of disabled adults, Supreme Court decisions that have gutted the ADA, rampant unemployment and a myriad of other issues that marginalize disabled people. In contrast, Obama has a plan and a vision for how he wants to empower disabled people in both the short and long term. This is clearly presented and has been readily available for months at his website. If you do not believe me check it out for yourself. Obama's support of people with disabilities goes well beyond empty promises that are designed to generate a knee jerk response. I am not sure why Obama has such a good understanding of disability related issues. I suspect it has less to do with personal experience than it does with those he has received advice from but this is speculation on my part.
Simply put, last night provided proof positive that Obama is the clear choice for the disability community. Even if viewers were not swayed by Obama's words McCain's reply highlighted how unaware he is to the needs of disabled people. McCain replied "We need to spend more, we need to spend more, that's the answer--why do we always have to spend more?" Why do we need to spend more? Let me suggest McCain visit an independent living center, group home, adaptive sport center, rehab hospital, or a myriad of places that are grossly underfunded. There here will be exposed to a system and culture that crushes the spirit of many disabled people who want to lead an ordinary life other take for granted.
The transcript of the debate is widely available and it is worth quoting some of it. In his answer, McCain fell back on well worn cliches. "She'll be my partner. She understands reform. And, by the way, she also understands special needs families. She understands that autism is on the rise, that we've got to reach out to these families, and help them, and give them the help they need as they raise these very special children. She understands that better than almost any American that I know. I'm proud of her".
As many have pointed out, Palin is not an expert on autism. She does have a nephew who has autism and all know her son Trig has Down Syndrome. This limited personal connection may give her an "understanding" of what is involved in raising children with "special needs" but that does not mean she has any added insight or expertise. This may come with time but to my knowledge her practical experience with disability is limited to caring for her son who is less than a year old. It appears to me she has made a connection with parents of children that have Down Syndrome but this has not translated into action. Indeed, the skeptic could postulate that Palin is exploiting these parents for photo opportunities that tug at the heart strings of those unfamiliar with disability. I also get a sense that Palin has not truly embraced or begun to get a nuanced understanding of the disability community. Again, this may come with time but as of today her failure to act, to change the rhetoric coming out of the McCain cmpaign and offer specific examples of what she would do to enhance the lives of children with special needs makes me question what she says.
The passage in the debate that is of great interest to me did not come from McCain. It was Obama's reply to the above quote that was dignified, polite, and raised the bar above partisan politics. Obama could have lobbed a nasty shot at Palin and the mean spirited comments she has made recently but graciously conceded she was a capable politician, one that has energized the Republican base. I give Obama credit for being polite, I doubt I could have held my tongue. Regardless, this statement by Obama stood out:
"I do want to just point out that autism, for example, or other special needs, will require some additional funding, if we're going to get serious in terms of research. That is something that every family that advocates on the behalf of disabled children talks about. And if we have an across the board spending freeze, we're not going to be able to do it".
Here we have a distinct and profound difference between Obama and McCain. The McCain campaign through Palin pays lip service to special needs children but offers no change in the draconian funding of programs for the people they supposedly care about. Furthermore, McCain and Palin have said nothing about the needs of disabled adults, Supreme Court decisions that have gutted the ADA, rampant unemployment and a myriad of other issues that marginalize disabled people. In contrast, Obama has a plan and a vision for how he wants to empower disabled people in both the short and long term. This is clearly presented and has been readily available for months at his website. If you do not believe me check it out for yourself. Obama's support of people with disabilities goes well beyond empty promises that are designed to generate a knee jerk response. I am not sure why Obama has such a good understanding of disability related issues. I suspect it has less to do with personal experience than it does with those he has received advice from but this is speculation on my part.
Simply put, last night provided proof positive that Obama is the clear choice for the disability community. Even if viewers were not swayed by Obama's words McCain's reply highlighted how unaware he is to the needs of disabled people. McCain replied "We need to spend more, we need to spend more, that's the answer--why do we always have to spend more?" Why do we need to spend more? Let me suggest McCain visit an independent living center, group home, adaptive sport center, rehab hospital, or a myriad of places that are grossly underfunded. There here will be exposed to a system and culture that crushes the spirit of many disabled people who want to lead an ordinary life other take for granted.
Wednesday, October 15, 2008
Quid Pro Quo
I am a sucker for films that involve murder, mayhem, and story lines that are out of the norm. Given this, I looked forward to seeing Quid Pro Quo, a film made by Carlos Brooks that stared Vera Farmiga and Nick Stahl. The film reviews I read all characterized Quid Pro Quo as akin to David Cronenberg's Crash. I got to watch Quid Pro Quo last night and am at a loss as to what to make of the film.
The main characters, played by Farmiga and Stahl, are Fiona and Isaac Knott. Isaac is an NPR reporter who was paralyzed in a car accident as a child. Fiona is an attractive blonde art restorer that works in a museum. Fiona contacts Knott about a group of people that want to be disabled. Characterized as "wannabes" Isaac tries to understand why anyone would desire to be paralyzed or become an amputee by choice. Two story lines emerge in this film, first, being disabled for "wannabes" is an exalted status and a wheelchair is akin to a throne. Second, Fiona is a closet "wannabe" and seduces Isaac because she has an overwhelming desire to be paralyzed. The first half of the film is captivating. Fiona and Isaac are interesting characters that draw in the viewer. Isaac is reserved and a thoughtful soul. In contrast, Fiona is a beautiful, exotic, and creepy. Their developing relationship is fascinating to watch.
From my perspective, the most interesting part of the film involves subtle and pointed comments about disability. For example, I liked the low wheelchair height camera angle that followed Isaac as he navigated the streets of the city. Another disability theme that was well done involved Isaac's dating life. Isaac's co-worker sets up a date for him and the woman he was supposed to meet walks out once she realizes he uses a wheelchair. Another scene worth noting involved Fiona's seduction of Isaac in which he declares "Yes, I can have sex". In answering an unspoken question Isaac is confronting a specific social inequity--disabled people are considered public property and expected to answer any and all questions that pop into people's minds. At the forefront of rude and intrusive questions people ask is about sex.
The problem with Quid Pro Quo is that once the relationship between Isaac and Fiona is established the film spins out of control. The story line becomes convoluted and grossly unrealistic. I understand the filmmakers intent--a role reversal in the lives of the two central characters--but the way this is accomplished is terrible. Fiona "comes out of the closet" and uses a wheelchair while Isaac gets a pair of magic shoes that enable him to walk. Worse yet, the film tries to explain the cause of Isaac's disability and Fiona's obsession with paralysis. In short, Quid Pro Quo is an interesting movie that had great potential but failed to resonate in the end.
The main characters, played by Farmiga and Stahl, are Fiona and Isaac Knott. Isaac is an NPR reporter who was paralyzed in a car accident as a child. Fiona is an attractive blonde art restorer that works in a museum. Fiona contacts Knott about a group of people that want to be disabled. Characterized as "wannabes" Isaac tries to understand why anyone would desire to be paralyzed or become an amputee by choice. Two story lines emerge in this film, first, being disabled for "wannabes" is an exalted status and a wheelchair is akin to a throne. Second, Fiona is a closet "wannabe" and seduces Isaac because she has an overwhelming desire to be paralyzed. The first half of the film is captivating. Fiona and Isaac are interesting characters that draw in the viewer. Isaac is reserved and a thoughtful soul. In contrast, Fiona is a beautiful, exotic, and creepy. Their developing relationship is fascinating to watch.
From my perspective, the most interesting part of the film involves subtle and pointed comments about disability. For example, I liked the low wheelchair height camera angle that followed Isaac as he navigated the streets of the city. Another disability theme that was well done involved Isaac's dating life. Isaac's co-worker sets up a date for him and the woman he was supposed to meet walks out once she realizes he uses a wheelchair. Another scene worth noting involved Fiona's seduction of Isaac in which he declares "Yes, I can have sex". In answering an unspoken question Isaac is confronting a specific social inequity--disabled people are considered public property and expected to answer any and all questions that pop into people's minds. At the forefront of rude and intrusive questions people ask is about sex.
The problem with Quid Pro Quo is that once the relationship between Isaac and Fiona is established the film spins out of control. The story line becomes convoluted and grossly unrealistic. I understand the filmmakers intent--a role reversal in the lives of the two central characters--but the way this is accomplished is terrible. Fiona "comes out of the closet" and uses a wheelchair while Isaac gets a pair of magic shoes that enable him to walk. Worse yet, the film tries to explain the cause of Isaac's disability and Fiona's obsession with paralysis. In short, Quid Pro Quo is an interesting movie that had great potential but failed to resonate in the end.
Tuesday, October 14, 2008
Election Double Talk
As election day nears the Obama/Biden and McCain/Palin campaigns are in high gear. The rhetoric of the campaign has been building and has not yet reached its apex. In terms of disability related stories, exaggeration and falsehoods abound. If I had to pick a "winner" for misleading statements McCain and Palin are the clearly ahead of Obam/Biden. Two examples should suffice: 1. Special Needs Truth 08 pointed out an October 9 Sean Hannity interview with McCain and Palin. McCain said that many "special needs" families show up at campaign events and "Sarah Palin wants to take on that task of helping relieve the burden". Apparently in McCain's estimation Palin wants to discover the cause of autism and find a cure for it, a job she is "uniquely qualified to do". 2. According the Boston.com at a town hall meeting in Milwaukee Palin boasted that she had increased funding for programs for children with disabilities in Alaska and would do the same nationally.
On example one: Palin's son Trig does not have autism. Trig has Down Syndrome. Palin is not the least bit qualified to find a cure for autism. McCain should know the difference between autism and Down Syndrome. McCain should also know that children with autism or Down Syndrome are not a "burden" on anyone. If McCain doubts this, he should listen to what Palin has to say about her son Trig.
On example two, Palin stated she will increase spending for special needs children. McCain has stated he will not increase spending programs. In fact he often states that he would "impose a spending freeze to stop the spending spree in Washington". This line garners applause but is at direct odds with what Palin has stated.
While I do not like McCain and Palin, I will admit that within a very narrow range Palin states many good things about "children with Special needs". The Palin interviews I have seen are either conducted by media cronies such Sean Hannity who asks powder puff questions or pointed interviews in which Palin refuses to state anything beyond memorized talking points. The result is I have no clue as to whether she has the inclination or power to become an advocate for children with special needs. This is particularly confusing to me in part because Palin generates such a strong response--people seem to either love or hate her. No such reaction is evident in the disability community. Savvy disability commentators are critical of Palin because of her far right-wing positions and distrust of Republican policies. Yet, like other disabled people, I hope she does indeed become an advocate for not just special needs children but the adults they become.
On example one: Palin's son Trig does not have autism. Trig has Down Syndrome. Palin is not the least bit qualified to find a cure for autism. McCain should know the difference between autism and Down Syndrome. McCain should also know that children with autism or Down Syndrome are not a "burden" on anyone. If McCain doubts this, he should listen to what Palin has to say about her son Trig.
On example two, Palin stated she will increase spending for special needs children. McCain has stated he will not increase spending programs. In fact he often states that he would "impose a spending freeze to stop the spending spree in Washington". This line garners applause but is at direct odds with what Palin has stated.
While I do not like McCain and Palin, I will admit that within a very narrow range Palin states many good things about "children with Special needs". The Palin interviews I have seen are either conducted by media cronies such Sean Hannity who asks powder puff questions or pointed interviews in which Palin refuses to state anything beyond memorized talking points. The result is I have no clue as to whether she has the inclination or power to become an advocate for children with special needs. This is particularly confusing to me in part because Palin generates such a strong response--people seem to either love or hate her. No such reaction is evident in the disability community. Savvy disability commentators are critical of Palin because of her far right-wing positions and distrust of Republican policies. Yet, like other disabled people, I hope she does indeed become an advocate for not just special needs children but the adults they become.
Sunday, October 5, 2008
Required Reading
I just read yet another outstanding article by Pul Longmore entitled "Palin Talks About Special Needs Children, But Obama has Substantive Plans For All People With Disabilities". The article appeared in the Huffington Post October 4. Below is the link:
http://www.huffingtonpost.com/paul-k-longmore/palin-talks-about-special_b_131758.html
Here are some of the highlights worth noting:
Palin talks about being a friend of "special needs children". This is great but Longmore points out that 90% of Americans that have a disability are adults.
The McCain/Palin website has a single page about "Americans with Disabilities for McCain". The Obama/Biden website has detailed policy proposals and a comprehensive "Plan to Empower Americans with Disabilities".
Longmore provides excellent summaries of the McCain and Obama positions on health insurance, medicare, mental health parity, and community based personal assistance services. If you are undecided who to vote for or want to confirm why Obama is the logical choice disabled Americans I urge you to read Longmore's article.
On final point, Obama and Biden support the Community Choice Act, CCA, S. 799. At the national presidential forum on disability issues held last July McCain stated that such a law would cost to much and was the wrong kind of legislation. This is the sort of legislation that will some day have a profound impact on the life of Sarah Palin's son Trig. If Palin is indeed the friend and advocate of children with special needs a good way to demonstrate that would be to change McCain's position with regard to the CCA. Palin has done nothing that has impressed me but this sure would be a step in the right direction.
http://www.huffingtonpost.com/paul-k-longmore/palin-talks-about-special_b_131758.html
Here are some of the highlights worth noting:
Palin talks about being a friend of "special needs children". This is great but Longmore points out that 90% of Americans that have a disability are adults.
The McCain/Palin website has a single page about "Americans with Disabilities for McCain". The Obama/Biden website has detailed policy proposals and a comprehensive "Plan to Empower Americans with Disabilities".
Longmore provides excellent summaries of the McCain and Obama positions on health insurance, medicare, mental health parity, and community based personal assistance services. If you are undecided who to vote for or want to confirm why Obama is the logical choice disabled Americans I urge you to read Longmore's article.
On final point, Obama and Biden support the Community Choice Act, CCA, S. 799. At the national presidential forum on disability issues held last July McCain stated that such a law would cost to much and was the wrong kind of legislation. This is the sort of legislation that will some day have a profound impact on the life of Sarah Palin's son Trig. If Palin is indeed the friend and advocate of children with special needs a good way to demonstrate that would be to change McCain's position with regard to the CCA. Palin has done nothing that has impressed me but this sure would be a step in the right direction.
Friday, October 3, 2008
VP Debate and Disillusionment
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.
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.
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.
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