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Friday, August 14, 2009

As Usual the NYT Misses the Point

In today's New York Times sport section there is story about Jerrod Fields, a gifted runner who is an amputee and will compete in the 2012 Paralympic Games. See "An Injured Soldier Re-emerges as a Sprinter". The NYT article is a typical example of how disability is poorly discussed and is yet another lost opportunity to educate the public. Far too much space is devoted to discussing the circumstance of how Fields, a United States Army corporal, lost his leg. The story also relies on a great hook, a line to suck the reader into the story: Fields is quoted as stating: "Cut it off, he told doctors. I want to go back to Iraq". Golly how tough, how manly, how ever so military and, to me, misleading. The stage is set, Fields is not your typical amputee--he is harder than nails. He puts all those other whiners who were injured to shame. This ignores the reality people do not want to think about: the lack of funding for disabled veterans that have lost a limb, poor conditions in veteran administration hospitals, and long waiting lists for needed rehabilitation services.

In focusing on Fields experience in Iraq and his childhood (his parents died when he was very young and he grew up in the inner city of Chicago infested with gangs) the NYT article fails to place value on Fields athletic achievement. He is not simply a world class athlete but rather a amazing man that has overcome physical and social obstacles. While this is may be true, the human interest focus is demeaning. It also neglects to explain the nuances and divisions with the running categories for those that will compete in the Paralympic Games. No mention is made of the significant difference between being a below the knee amputee versus an above the knew amputee. Passing reference is made to Oscar Pistorius, the most well-known Paralympic athlete, and prosthesis technology. In place of these important issues the reader is confronted with melodrama: "Fields acclimated to a prosthetic foot so quickly that he found himself barely missing the real one. He ran swiftly and even did standing backflips". Would such a sentence ever appear in a story about a world class athlete without a disability? Not a chance. The sentence quoted is followed by a comment that Fields had never heard of the Parlympic Games until a fellow soldier told him about them. My first thought when I read this was stories such as the one I was reading were exactly why no one knows what the Paralympic Games are. Instead of legitimate sport coverage of these world class athletes we get human interest fluff. What do readers remember? I read a story about a disabled Iraq veteran that could run really fast with a prosthesis. Here the disability comes first, the person second, the prosthesis third. Absent is the high level of athletic competition and accomplishment. The fact Fields will run against other athletes from all over the world is glossed over and no mention is made of the fact the Paralympic Games are not televised live (they are rebroadcast on the obscure cable station Universal Sports). No wonder Field and most Americans have never heard of the Paralympic Games.

What I find most distressing about the NYT article is that adaptive sports are amazingly exciting. I think anyone with a passing interest in sports would be drawn to the athletes involved, the creative and unique adaptations, technology, and intensity of the competition. Paralympians are intense and colorful athletes that are truly devoted to a given sport and make significant sacrifices to compete. To date, only one popular sporting event, the X Games, has embraced athletes with a disability. The response based on what I have observed is enthusiastic. This enthusiasm is not based on human interest but respect for the skill level of the competitors and athletic achievement. And this, sadly, is what the NYT chose to ignore.

Thursday, August 13, 2009

Two Takes on Health Care in the US News and World Report

I am not sure if the current US News and World Report issue represents progress or not. In the US News and World Report two short statements about healthcare reform appear. At issue, Two Takes, are the opposing views of Michael D. Tanner, former senior fellow at the conservative Cato Institute, and Laura Hershey, advocate for people with disabilities and writer. Both Tanner and Hershey were asked "What do you think? Should American healthcare be rationed?"

As one would expect, Tanner and Hershey views are diametrically opposed to one another. Tanner thinks health care is a valuable commodity, a finite one that must be rationed. Hershey points out the inherent dangers of rationing health care for people with a disability. This makes for interesting reading but I find the entire premise undermines disability rights at a fundamental level. Hershey and her life requires explanation and a solid defense. Tanner's existence and life is assumed to have value and he writes from a position of assumed power. This is the exact same issue that Harriet McBryde Johnson wrote about in the New York Times with regard to her meeting and debate with Peter Singer. I thought McBryde won the day but I must be wrong because Tanner and Hershey cover similar fundamental grounds. Why do we people with a disability need to justify our existence? Why do people assume my life and the lives of others with a disability are inherently less valuable? This puzzles me as I have been retrospective lately. Growing up in the late 1960s and early 1970s with a profound neurological deficit was hard. Pediatric neurology was in in its infancy, modern diagnostic tools such as an MRI or CAT scan were figments of people's imagination. The prospects for morbidly sick children such as myself was grim, the overwhelming majority died. The result was that I physically suffered as a child but one thing I never worried about was my healthcare. Technological marvels did not exist, hospitals were sterile and cold environments that controlled every aspect of my life but those charged with my care did a marvelous job. I never doubted my humanity in large part because health care was not rationed nor was it perceived to be a valuable finite commodity. If health care is in fact a commodity I should have died--a massive amount of health care dollars and human labor was spent keeping me alive. This was done without question and I shudder to think of what happens today to people whose care is expensive. Thus like McBryde, I fear what she called the "disability gulag". This metaphorical gulag is not limited to nursing homes but rather is on my mind every time I visit a doctor, enter a hospital ER, and access healthcare in the broadest sense of the term. Will my paralyzed body be perceived to be inherently problematic and expensive? Will I receive the same sort of medical treatment as a person that walked in the door? Will it be assumed I am physically and cognitively disabled? If I have a stroke, will some over tired resident or attending physician assume I do not want to live because I have already suffered enough?

I sincerely doubt the sorts of questions that run through my mind go through the minds of people without a disability. Our bodies, disabled bodies, are out of the norm, subject to intense scrutiny and people such as myself have put a tremendous amount of thought into why this is the case. This is why we people with a disability and those that study disability need to have a voice when health care reform is subject to discussion. My life is at stake as is the life of other people with a disability. If you question this I suggest you read what Laura Hershey has written in the US News and World Report. When she was admitted to the hospital for pneumonia she was asked not once but twice by nurses "Do you have a DNR order?" I have no doubt this question was asked because of her disability. Like other smart activists all too familiar with disability rights her reply was classic: "I came to the hospital to get better not die". Score one for disability rights, nil for ignorance! This story highlights that healthcare is deeply ingrained in our culture and those disenfranchised like Hershey are the people most likely to experience discrimination. Like I said, a lot is at stake--my life.

Wednesday, August 12, 2009

More on Health Care Hysteria

I read many blogs that are disability related. I never cease to be amazed by the high quality of writing I encounter and often wonder why the mainstream media is so dreadful. Disability is almost always poorly covered, reliant on antiquated stereotypes, and worn out cliches. When I read blogs I come across vibrant writing, thought provoking ideas, funny stories, anger, happiness, interesting human adaptations and a wide range of emotions. This morning over coffee I got a great chuckle from one such blog, and the following paragraph that touched upon the health care debate:

"Conservatives love to pretend they're the disability community's knights in shining armor when it suits their political purposes. In years past, they tried to co-opt us in the abortion debate by making both subtle and explicit claims that every gimp would be snuffed out in the womb were it not for them staying the liberals' murderous hand. The right has now adapted the tactic to the health care debate, portraying themselves as the defenders and protectors of us meek and vulnerable cripples who dwell in the shadow of a tyrannical and cruel government. I won't win any Pulitzers for this sentence, but they can take their false magnanimity and go fuck themselves."

This paragraph reinforced why I love the well used tag line"piss on pity" employed by disability activists. People, not all but most, don't understand disability is not about a physical or cognitive deficit but the social problems placed on top of an existing deficit. For example, people with a disability are unemployed in great numbers not because they cannot physically work but rather employers will not hire them. This is bigotry plan and simple. In the blogs I read such as insight and common experiences abound. In sharp contrast, the mainstream media and politicians such as Sarah Palin, who I quoted in my last post, are disingenuous. They seek to prompt an emotional reaction devoid of thought. Editorials and stories that employe this tactic abound. The great "health care debate", purposely put in quotation marks, is a classic example. As I noted, no such debate is taking place. Instead, the media has a pack mentality in which they go for the jugular. Reason and rational debate are absent. In its place is hysteria, news bites that are short on facts and long on emotion. This is no way to learn and why in spite of my comments I am hopeful about the future. The college students I teach do not read much less think about the print media. When a news story breaks they turn to the internet for information. Sure they likely go to sources such as CNN online but from there they quickly move on to other small sites that are of interest to them. Hence the future is online sources such as blogs and other nontraditional resources. It is on line people will find this little blog and hundreds of others like it where people with disabilities tell it like it is. Thus I am very proud of not only my disability but to be part of a vibrant on line community. Change is coming and I hope to part of it.

Tuesday, August 11, 2009

There is No Health Care Debate

The harder President Obama pushes for health care reform the more hysterical its advocates and proponents become. In this "debate" not a single individual or political entity has impressed me. The Democrats and Republicans are doing what they do best--being politicians with an extreme bias. Semantics, power plays, harsh sounds bites are all the norm. Nuanced debate is absent. Reason is replaced by inflexible and rigid unchanging views. Into this void is Obama who appears with every passing day to be the master at political compromise. This is bitterly disappointing to me but anything and anyone is better than former President Bush and his Republican administration. This thought came to me when I read Sarah Palin's Facebook commentary about health care. She wrote:

"The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."

Pailn's rhetoric, right or wrong, is counter productive. I have chosen this quote because of the use of the word evil. It reminded me of Bush, the abuse of religion on the part of politicians, and the utter lack of the ability to enter into a reasonable discussion about health care reform. To be fair, I need not rely on Palin's words. Nancy Pelosi, on the other side of the debate, is equally inflexible and hysterical. Both those for and against health care reform raise good points. For instance, I agree with Palin that people who are elderly or disabled are likely to to suffer if health care reform is passed as it currently is proposed. This doe s not make the proposal, HR 3200, "evil", rather inherently flawed. Instead of using such inflammatory wording Palin could have stated that funding for people like her son in the form of group homes is grossly under inadequate. She could have noted that group homes still encounter stiff resistance when they open and question why is this the case. This in turn could have led her to discuss the history of discrimination people with cognitive disabilities have experienced thus emphasizing the need to fund group homes and community based living for people with disabilities and the elderly.

I do not see a debate taking place about health care reform among the general population as well. I was away last weekend and attended a great party. Surrounded by conservatives who oppose Obama I was taken aback by the vigor with which they opposed health care reform. Obama was characterized as being a "communist", one who wanted to destroy capitalism, and that providing "free health care to people who did not have a real job would kill the economy". When I asked what should be people who are ill or elderly do if they have no health insurance they had no reply. I asked what do they suggest paralyzed people do when a wheelchair breaks and the replacement cost is $5,000 and not covered by insurance. I also asked did it make any economic sense that medications are so expensive it leads many to go bankrupt. Again, they had no ready answer. I asked these questions not to undermine their thoughts, well maybe I did, but to get them to think in a more nuanced way. Health care reform is in my estimation needed, especially for people who face staggering medical bills and cannot afford insurance. This fact is acknowledged but again extreme views and examples are used to illustrate this point. Thus I lay blame with not only politicians who rely on rhetoric and sound bites but the media that thrives on such clips. Whipping people into a frenzy is all too easy. Debate, reasonable discussions among those that disagree but are respectful to the opposition does not exactly make must see television. Think CSPAN and a long detailed discussion of the minutiae of the 1,017 page health care reform bill. Such viewing may not be entertaining but it sure is important. I simply wish we had much more of this.