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.
