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.
10 comments:
This is a great post. Makes
';lk me
think about now much money we transplant patients make for the medical industrial complex (and save the government since dialysis is paid for by the Gov. for nearly everyone and much more expensive.) We make money for drug companies with our ridiculously expensive drugs, for hospitals with our lucrative transplant surgeries and for medicine in general with life long follow up medical care.
As for cigarettes and soda, well my new kidney doesn't like soda so I say just make them both illegal :). Yeah, like that will ever happen......
I cannot even begin to imagine how much post transplant medications cost. Yet somehow I can accept they must be very expensive given the research required to develop them. What bothers me are the ordinary medications and analyses that are costly. High blood pressure medication for instance can cost well over $100 to refill. Why does a urinary analysis and culture cost $100? This seems like profiteering to me and the poorest among us suffer. Which is cheaper, providing affordable medications or forcing people to choose between purchasing medication or food for supper?
As for taxing soda and cigarettes in the extreme that will never happen. Instead we moan and groan about obesity but fail to accept the fact eating healthy is expensive. So expensive many cannot afford to eat fresh fruits and veggies daily. What is the cheap alternative? Salty, fatty fried foods that are cheap and profitable to manufacture. And let me ask you which does the local supermarket carry the most of: fresh fruit or potato chips?
Not long and rambling, William. You have a lot of thoughts there.
I think you're right to fear that the government's primary value will be pragmatism.
I wrote a little bit about that here.
Medical costs are very strange, you're right. Insurance companies and government programs have interfered with the free market to the point that I don't know how it could be possible to determine the real cost of anything.
Laura, Thanks for the link. What you wrote about has been repeated in other countries such as Canada. This is pragmatic and discriminatory.
Cost of durable medical goods and what is and is not covered makes no sense. For instance, I have hospitalization only in terms of health insurance (it is all I can afford). Unless I am admitted to a hospital nothing is covered. Thus I pay hundreds of dollars for a wheelchair cushion that lasts about two years. Yet if I got a giant skin sore and needed surgery to the tune of tens of thousands of dollars that would be covered in full. This defies logic.
This is a North American, modern centric view, correct? I am confused because you keep using only North American Terms "military industrial complex" but then you anthropological (do you mean sociological?).
As for your suggestion regarding heart medication, it has already been done by the Thai government - going to India's generic drugs and making AIDS and heart medication free to all. This made the US try to get a global embargo on them. However, since Brazil led the way in using India's generic drugs the 'second world' countries are giving their citizen's equal treatment through cheaper medication. Unfortunately the citizens of the US (and Canada, regardless of the slightly cheaper medications), have been left behind. And are likely to be so further into the future.
Medicine has been well documented for 3,000 years. If there was an acceptance, look at the population between the wars; prostethics were commonplace, so were the effects of polio, blue baby syndrome, TB, and many other impairments. It was commonplace for an extended family to have one or more relations with an impairment and certainly not stigmatized (well with the exception of epileptics, people with CFS/M.E., MS and other unrecognized autoimmune conditions).
It is interesting that many of the people inspirational for those with disabilities come from this period or before (or just after). Modern medicine has recognized conditions but has not helped the two generations who are just learning about the conditions to know how to react. People knew how to react to someone with postpolio 60 years ago, but they don't today. That's interesting.
And yes, with a country founded on a health/weath doctrine, and advertising the same in medicine, it isn't really that surprising that it takes a longer generational period to achieve the understanding of diversity. For example, in Japan, being blind is completely acceptable, and most of the major cities are completely integrated for it (there will be ribbed walkways and braille in subway stations where there is no wheelchair elevator) because that is the cultural tradition.
But here, I can't fathom it. Or in the UK; the Prime Minister is seriously impaired and the first thing he does is go after people on disability. The US has as a greatest president, one with Marfan's and yet is not familiar with either the disease or connective tissue disorders like EDS. A President with postpolio and yet culturally unable to integrate with wheelchairs. The 'mainstream' or what is culturally acceptable limits are what the generation is taught they are. People of different races eating together is not something that starts riots now, but it did three to four generations ago.
The only country in the world who has a stigma so large against AIDS, is one - the USA. Because in China, you get AIDS at the hospital from blood merchants. In South Africa from rape or your husband. Again, in Brazil, in promoting safe sex during Carnival and beyond lowered HIV rates to less than that of the US. And the big risk in the UK advertised is a STD, not AIDS, as the primary cause is immigration.
As for rationing health care, I am opposed. No lotteries of living and dying - it is not like it hasn't been done before.
As for income generating, I don't know how to talk budget about a country who has a defence budget larger than all social spending combined including medical; is the largest exporter of porn (could tax that), highest importer of human trafficking (er...can't tax that); has the highest levels of per population people in prisons (can't tax that either), and yet one of the highest rates in the western world of child abuse, rape, and murder (per capita). Tax the bullets? Tax the condoms? Tax devo sites (there is the largest one in the world here in B.C., Canada!). I dunno. It is a knot that I cannot cut or unravel.
Elizabeth, Thanks for your long and thoughtful reply. To me the medical industrial complex refers to the American health system alone. I take an anthropological approach to life and academics but not to the exclusion of other ideas and theoreticians. For instance, Erving Goffman's work has been very influential to my thinking.
There is much to dislike about a powerful and wealthy nation like the USA. In fact, there have been times I am embarrassed to consider myself an American. Our penchant for war mongering and excessive expenditure on military expenses is deeply troubling and wasteful. Your comments made me think the American health care system reflects the broader cultural extremes that are so obvious--the great disparity between rich and poor, those with and without insurance etc. There is no doubt our health system is in desperate need of change and the same can be said for American culture.
Dear William, thank you for your kind reply, since now in the light of...er. 11 pm, I see that I did not have connective sentences, explain my pronoun use and some other flaws.
I did look up and there is a branch of anthropology that is modern anthropology and if you are the same William J Pierce that did the bio on Leslie White then I can understand your viewpoint and concentration on the US primarily. But I don't, in all honesty understand the difference between the coverage of cultural crit (using people like Noam Chomsky - who makes many similar themed points but on different subjects) and sociologists from modern anthropologists? I thought the point of anthropology in regard to our own culture was to attain the 'third sight' of one who see the assumptive nature of the society we live in as if new. But this doesn't seem to be the style of um...US modern cultural anthropologists. And I did not study anthropology exclusively but I thought the noting of the acts, their meanings (and words but the meaning regardless of words) was the path to understanding value in the society. I can see how this could be valuable for examining the role of the disabled in US or North American society, but without comparison historical to trace the paths, I am not sure how it can be used? Or is that where cultural crit comes in? For example, the movement of Eugenics practiced in the US toward prisoners and Native (indians affairs) population until the 'cruel and unusual punishment' decision in the late 40's and the final revelation and ending of the sterilization of females on reservations in the late 80's would coincide with the time a governor of California was simply releasing people who had been institutionalized 20-50 years into the street closing long term mental care facilities (a sort of 'nature will sort them out' eugenics). That style has been be copied quickly over and over since, including here in BC. But did it spread to care facilities of those with disabilities? And if not does that make the disabled higher in the society than the prisoners and mentally ill?
Sorry, it is just this is the kind of thing that academically would interest me if I had the capacity to get to the university library to trace. And wondered if it is something Anthropology covers?
Thank you again for your kind remarks and I hope you understood what I was trying to say, since reading it now I can see many missing connector sentences. For me, I am split, the academic part of my brain wants to see the rigor of comparison applied to the ideas, particularly to something as broad as medicine (how did those with impairments fair during the plague years for example? And how does that compare to treatment today when a new pandemic like swine flu appears?).
Another part of me, the person who has been a local disability activist can't feel impartial to ideas that affect my life. So it is complicated. I do know that for example, diabetes is considered 'normal' but here in Canada, those with disabilities with seizure disorders are very much not. Even McBryde in her fiction book talks about the fear from someone who has CP of those with seizure disorders, how they go from walkie-talkie to 'something not human'. A brutal honesty that is useful to determine status quo but I still can't see an integration solution, can you?
Also how has a generation of being with the ADA made a difference in what people expect? Do moms with baby strollers now expect those curb cuts, are things being made for the rest of society which anticipate the mandatory requirements of the ADA like ramps in malls and elevators (again, often allowing greater freedom for those with babies, yet not designed for being narrow enough to pass someone with a wheelchair on a ramp).
Elizabeth, Yes, I am the William J Peace that wrote a biography of Leslie A. White and other articles on the history of anthropology in various academic journals. At the present time modern or contemporary anthropological theory is hopelessly fragmented and no single dominant theory is used by all or a majority of anthropologists. This is a problem and strength of the field which has historically been comparative in nature before Margaret Mead made the field popular with Coming of Age in Samoa. Unlike many of my peers I consider the history of the people we study to be critically important. This brings me to the three general points I take from your interesting and thought provoking comments:
1. Academics and a day to day approach to daily life with a disability or disability activism cannot be separated. I make a concerted effort to connect my academic interest in disability to improving the social position of people with a disability. We anthropologist term this engaged anthropology. I am very much engaged and work daily to overturn the stigma attached to disability. MY goal is equality.
2. One cannot appreciate disability today without a knowledge of disability history. You mention Eugenics and that is only a small part of our history. The last forty years have seen a host of laws passed and a move away from institutionalization. This change has been strongly resisted at every turn, see the failure of the ADA and the need for the ADA Restoration Act. This recent past must be studied and lessons learned applied to future legislation and social activism.
3. I see two different types of Americans with a disability. There are older folks such as myself I think of bad ass pre ADA cripples. We faced flagrant discrimination and pushed back hard and against long odds succeeded. That is we rejected a lack of expectations and lead a full and rich life. The second group of American disabled people are post ADA. These men and women in their 20s grew up in a politically correct world that said all the right things about disability. However, social actions and what is stated do not match. Discrimination is as rampant as unemployment. Sadly, when this dichotomy is confronted too many do not know hw to react.
Finally, blogs are great but not for all means of communication. You raise exceedingly complex issues that require a more detailed reply than I have given here. If you ever want to go into more detail send me an email. I would be happy to reply in more detail. One last point, I read your blog on a regular basis.
I agree with you 100% and I also think about the medical industrial complex and its relationship to military and to the prison industrial complex.
Thanks for a brilliant, brilliant post.
Liz
http://liz-henry.blogspot.com
Liz, Thanks for the kind words. I had not thought of prisons as an industrial complex. I suppose Goffman's work on total institutions is always foremost in my mind. I like your blog very much. Earlier this year I was impressed by your entry on airline travel, a hassle of giant proportion when one uses a wheelchair.
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