Flying Can be Hassle Free

My son and I spent the last week in the Seattle area. We ate our way through Pike Street Market, thoroughly enjoying outstanding produce and fresh sea food. We also spent much time people watching. My son looked at a few colleges he is interested in attending when he graduates from high-school. As for me, I forgot how much I enjoy urban life. Seattle is a vibrant city, has wonderful museums, and the waterfront is beautiful. What I did not enjoy was the crowds. It never ceases to amaze me how people react to my presence. I lost count of the times I heard "Watch out a wheelchair!" What this means is a mystery. I have not heard of any run away wheelchair users hell bent on injuring those that ambulate on two feet. What exactly are people watching out for? Are they afraid I will crash into them or are they just afraid of my presence. I eventually had enough of this and during the week a proverbial light bulb went off in my head. When a person stated "Watch out for the wheelchair" I would turn to my son an mimic their voice: "Watch out for the lady in the pink shirt". In return I got a few puzzled looks, one or two nasty replies, and much to my delight a few people seemed to get it. The comment, "watch out for the wheelchair" was dehumanizing and unnecessary. A small victory was had and I was proud to apply my anthropological knowledge to an every day situation. I felt very Goffmanesque!

What was really remarkable about our trip was how unremarkable our flight to and from Seattle was. I have always relied on major airlines such as Delta, Northwest, United, American, etc. My experience with these airlines is routinely horrible (exceptions exist of course). I have found ground and flight crews to be uniformly rude, demeaning, and uncoperative. I understand why this is the case. They are under intense pressure, over worked, under paid, and confronted by stressed out passengers who too often check their luggage and brains. However, I am a veteran traveler, need minimal or no help, and know how to board a plane quickly. What bothers me the most about airlines is the look and attitude airline employees seem to reserve for passengers with a disability. For those who travel a lot you will know what I am referring to: a look of disadain and dread is common when we appear. I often feel as though when I arrive to the gate I have the plague. This did not happen on our trip to Seattle. We flew on Jet Blue, an airline I have avoided in the past because I thought discount airlines would provide inferior service. When making reservations I wondered about this line of reasoning. No airline provides adequate customer support so why should I pay extra to be treated rudely? Screw Delta and Northwest.

I assumed Jet Blue would be like every other airline and treat me and my son poorly. Yet a funny thing happened on our trip. We were treated the same as any other passenger. Sure we still had to board first and got off last--standard operating procedure for every airline. An aisle chair was at the gate, on board the plane, and this was perceived by Jet Blue emplyees to be the norm. This is what I never feel like when I fly--normal. My presense was not perceived to be out of the ordinary, getting on and off the plane was stress free, and employees were polite. I have no idea if this is the norm for Jet Blue. Maybe we just got lucky. However I have heard from friends who fly on a regular basis that Jet Blue treats passengers with a disability like anyone else. What a radical idea! I wonder if this is corporate policy or due to the fact Jet Blue provides no services historically associated with airline travel. Expectations are severely limited. Jet Blue serves no food though free snacks and soft drinks are provided. They also charge passengers for every conceiveble item: $7 for a pillow and blanket, $2 for head phones and I was too cheap to inquire about the price of a movie. I was too happy regaling in my normality. Jet Blue won my business for the most basic reason--I was treated with respect and dignity.

Barriers to Higher Education Remain the Norm

Two recent reports from abroad have disheartened me. The first, a comprehensive report from the Australian Government, Shut Out, details the experience of people with disabilities. It is grim reading. Australian people with disabilities are isolate, rejected, neglected, abandoned and too often abused. The second report comes from Great Britain. BBC News and other media outlets are reporting that "one in five disabled students is being denied access to teaching and study rooms and libraries at universities". A study conducted by the Muscular Dystrophy Campaign found that of eight institutions it looked at in Wales only one had a detailed guide for students with disabilities. Inaccessible buildings, the lack of accessible bathrooms, and limited access to other buildings was not uncommon the MDA found. The lack of access is not restricted to British Universities or Australian society. The United States, the supposed world leader in disability rights, remains hostile to the inclusion of students with disabilities. Sure we have laws like IDEA but it is grossly underfunded. We also have the ADA and yet my son's public school does has a wheelchair lift on one bus--a short bus that carries significant stigma.

The story out of the UK reminded of not only my own experiences prior to the ADA being enacted but the work of Stephen Kuusisto at Planet of the Blind. Kuusisto, without question my favorite writer among many gifted writers in the field of disability studies, has written about his experiences in higher education. What separate Kuusisto from others in disability studies is he is always grounded in reality. Reader of his blog will know he has been critical of the University of Iowa where he teaches for their lack of commitment to wheelchair access. I am sure this does not endear to him to the powers that be. Unlike Kuusisto, I am part of the academic underclass, a part timer, easily replaced--think day worker with a great education--and am too timid to make a stink (I fear being fired). I too encounter substantial barriers where I teach. Purchase College is inhospitable and lacks the most basic commitment to wheelchair access. The services provided students with a disability are a mystery or nonexistent. When I complain, all nod in agreement that better access is needed, and nothing changes. All complaints and requests are ignored. Does this make me mad? You bet it does but I have encountered this problem from the day I entered Columbia University where I got my PhD.

The transition from Hofstra University where I got my BA to Columbia University was startling. At Hofstra there was a long standing and overwhelming commitment to wheelchair access and students with a disability in the broadest sense of the term. The cultural and physical environment was welcoming. At Columbia the exact reverse situation existed. Buildings were inaccessible and the administration had no interest in making the campus accessible. I was among the early trail blazers at Columbia, the first generation of students with a disability who were accepted. Thankfully I had a powerful advocate on my side--Robert Murphy, long time distinguished professor of anthropology and author of the Body Silent and many other books. When I encountered a problem as I invariably did I gave him a call or stopped by his office, the social hub of the department of anthropology. I don't know what he did but every problem I complained about was resolved in 24 hours. In return he expected and told me one thing: Don't screw up because if you do no student with a disability will be accepted for at least 10 years. You must not do well you must be an exceptional student. Talk about pressure! Being a pig headed hard ass I rose to the challenge and graduated from Columbia with distinction.

From what I am told, Columbia is a much different place today. Students with a disability do not encounter too much institutional bias. In spite of this change, higher education remains a difficult place for a student with a disability to navigate. Just as the BBC reported, physical access is no sure thing. Buildings remain inaccessible, administrators close minded, and some professors perceive accommodations as akin to being an advantage. I know this because my professorial peers complain to me that "disabled students expect me to give them extra time for an exam" or "Is it fair for a student to take notes for a student with a disability?" Worse yet, more than one professor has told me "the campus is overrun with students with learning disabilities". For a group of people who are supposed to be smart and open minded comments such as these are a shock. What has really changed is the law--the law is firmly on the side of students with a disability. This is great but does not change the fact the social and academic environment is hostile to the inclusion of people with a disability. Surely the skeptical reader is thinking this bad cripple must be cranky today. His air conditioner is broken and he is venting steam. Sorry but this explanation does not fit. For you skeptics each and every time I teach at some point I ask students a basic question when it seems appropriate: "Has anyone in this class ever had a professor that used a wheelchair". To date, not a single student has answered yes, a span of 15 years. This lack of representation is an overwhelming problem. People with disabilities are rarely if ever academic faculty members. We are not administrators, deans, or university presidents, registrars, board of trustees, provosts, etc. Students with a disability are more common but even their presence is not welcome. So what, I wonder are we teaching college students? There are no professors with a disability and students with a disability are unwanted. Is it any wonder social barriers remain on campus and in society? Not to me and this reminds of when my son was very small. He would ask me "Dad, why are you so unusual, no other fathers use a wheelchair". Stumped for a reply I borrowed a line from Sesame Street and told him: "It is not easy being green". This was true long ago and today. Depressing Monday afternoon thoughts.

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.

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.

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, the19thfloor.net 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 the19thfloor.net 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.

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.

The Medical Industrial Complex: Normalcy Rules!

This morning I realized that I have written 170 posts since I started this blog. Wow, that is a lot of text with what I hope is an obvious and consistent theme: disability rights are akin to equal rights. We people with a disability are equal to all those without a disability. The severity of any given disability is not relevant. The issue is civil rights and equality. How and why people with a disability are disenfranchised is my central interest because the ramifications are profound. People with disabilities are literally dying, unemployed, subjected to extreme medical procedures, stigmatized, isolated, segregated, beaten, and exploited. I have written about all this with dedication, passion, and caring. Like most people with a disability, I want to be equal, merely ordinary. Until that happens for me and all people with a disability I will continue to be a bad cripple and rail against injustice.

What I have not written about, not once, is my academic interest in the history of anthropology and how the military industrial complex has shaped the discipline. The term, military industrial complex, was coined by Eisenhower and fascinates me. It has changed not just anthropology but college education and our entire economy. This, of course, is well beyond the realm of this blog. However, the military industrial complex has a direct connection to our health care system and disability. Thirty years ago our health care system was characterized by the editor of the New England Journal of Medicine as the "medical industrial complex". I have come of age in that system or medical industrial complex as a "normal" child for 10 years, a profoundly ill person with neurological deficits for 10 years, and my adult life as a person with a disability. Growing up it depressed me that so little could be done to help people with serious neurological conditions. Far too many children I knew died before they became adults. Today, I am stunned by medical and scientific advances that extend life and good health. I am a direct recipient of these advances. Yet I have no doubt that our health care system is profoundly flawed and in desperate need of major change. The answer to our inherently flawed health care system does not exist in other nations. The British, Canadians, French, and Germans who we most often look toward for comparison have equally flawed health care systems.

I wish I could write that I have the solution to our health care woes. However, no single individual is that smart; not even Peter Singer, the media darling who has an insidinary impact on the health care debate. To me, the problem with our health care system is directly related to the human penchant to fit into the mainstream, to be normal, that is healthy. This thought came to me after reading Stephen Kuusisto's post "What Disability Knows: Part One and Part Two" (see Planet of the Blind). Kuusisto points out that all those with a visible disability can never be perceived as normal. Disability is thus mistakenly married to normativity. Divorce is not possible. I, and many others who study disability, agree. The stigma attached to the calamity known as disability is as unfortunate as it is unnecessary. We humans are a diverse bunch and this diversity is the essence of our strength. Yet we fear difference and particularly disability. In disability I see only potential, adaptation, and the best that humanity has to offer. I do not see illness, infirmity, or limits. In Kuusisto's estimation the idea of normal or mainstream is destructive and he recently "told a group of artists and advocates for people with disabilities at the Kennedy Center for the Arts in Washington, DC that the mainstream is one of the great, tragic ideas of our time. There is no mainstream. No one is physically solid, reliable, capable as a solo act, protected against catastrophe; there is only the stream in which each one of us must work to find solace in meaning". This is not only eloquent writing but brilliant thinking in terms of health care: who decides what is "normal" or "mainstream"? The answer is as simple as it is dangerous: the medical industrial complex.

The medical industrial complex is much like the military industrial complex I study in my historical work about anthropology. For a military industrial complex to exist, war or the fear of war must be present. Since 1941, the attack on Pearl Harbor and the more recent events of September 11, 2001 we have had an abundance of fear mongering and war. In the medical industrial complex fear is required as well. What do we humans fear? Ill-health, disease, the absence of normalcy and disability. Ill-health is why the medical industrial complex exists. The sick, infirm, and disabled are the primary consumers. The big bucks and profit is in abnormality, exactly what we fear. Healthy people, the mainstream, need not apply. Healthy people are the worst customers. What I want to know is how do we determine what is normal? Who is normal and why are they normal? As one who has not been perceived to be "normal" in thirty years I ask this question because I know power rests among the normate to use Rose Marie Garland-Thompson's awkward term. The normates define and control what it means to be different. These people, normates, dictate not only what is healthy but how ill health is treated. Certain illnesses carry great stigma, AIDS for instance, while others are deemed so rare they are not worth researching (think ALS or Lou Gehrig's Disease). This is why disability studies has much to offer the debate about our health care system--our bodies, disabled bodies, have been medicalized. Disability studies is the one field that is devoted to this subject in the form of why. Why is the disabled body so objectionable? What are the practical and theoretical implications of the rejection of the disabled body?

Policy makers, if they were smart, would listen carefully to what disability studies scholars have to say. We people with a disability are the best customers of the medical industrial complex. The problem is that we people with a disability and by extension disability studies scholars are outsiders. The debate over health care is dictated by people like Peter Signer and others who want to get the most bang for their buck and know nothing about disability. I am not dismissing the great cost involved in disability. I am intimately familiar with this. Rather, I want to point out what many know but do not acknowledge: the greatest economic savings do not rest among those that are ill or disabled. If we want to save money and lives the greatest economic and human savings are to found keeping people healthy. Healthy people, normates, are cheap and powerful. The normate, those that control the medical industrial complex, profit from illness. The largest profits are made diagnosing and treating the sick who get well. Just ask anyone that has undergone basic diagnostic testing, medical treatment and been deemed healthy afterwards. The money, capitalistic profit and core of our medical industrial complex, is dependent upon abnormality. Money is made when the medical industrial complex finds perceived pathology. Our perception of what is normal has become increasingly narrow. The reason is simple--profits. The more abnormal one becomes the greater the profit margin. We crippled people have become too costly and will be the direct targets of cost saving measures. Worse, our costly asses are not valued and it is all too easy to moan and groan about the costs of disability and old age. Why treat an elderly person who will die in the near future? Why should an insurance company pay for a $5,000 wheelchair when a wheelchair for $500 will suffice? These sorts of decisions are short sighted savings and laden with value judgments that keep me up at night.

If we want to save money this is what I propose: make basic health care affordable. Lower the price of medications for conditions such as high blood pressure so that even the poorest Americans can afford it. If we did this, perhaps what is known as the stroke belt among black Americans in the Southeast would not exist. Force people to live a healthy life style via gut wrenching taxes. If you want to smoke make it cost prohibitive. Raise the price of cigarettes by $10 a pack every year for the next five years and few people will smoke. If we don't want kids to drink soda and eat unhealthy foods ban them from schools. Tax soda and junk foods so severely they are unaffordable. I am not naive. I know we lack the resolve to follow through on my outlandish suggestions. I also know if we did it would have a profound and unsettling impact on our economy; in other words corporations would suffer. Our government will never let this happen and this is part of the problem I am trying to emphasize with my extreme examples. Disability has been eliminated from the discourse on health care reform or perhaps more accurately it is framed only as it pertains to "savings". That is disability is abnormality, costly, and must be reduced. To me, this is akin to targeting and eliminating what makes us so special and diverse. The advances in our medical industrial complex have created more diversity--I see people at adaptive sports programs that are amazingly unique. I marvel at the human spirit and adaptive ability we all possess. I am equally sad to know that physical and cognitive disability is stigmatized and there are times this knowledge makes me ashamed to be human.

Let me make one final point in this long and rambling post. I am not opposed to rationing health care. I can live with rationing health care but I can only do so if all are treated equally. Based on what I read and sense, we people with a disability are in for a very rough experience. Disability scholars may not have all the answers or even some of the answers but they must be part of the debate. The elderly, chronically ill, long term cancer survivors, people with a disability all have experience with our flawed health system and yet they are not sitting down to talk with President Obama or his advisors. This has me worried. People with first hand experience need to play a central role in any discussion about the medical industrial complex. I do not see this taking place and cannot help but conclude the so called health care reform in retrospect may seem like the biggest corporate grab for wealth our nation will ever witness. And who will get hurt the most? Why of course those that are the most vulnerable.