Fear of the Medical Industrial Complex

In spite of the newly enacted health care reform bill I believe our health care system remains hopelessly fragmented. In my estimation most Americans figure into one of two groups: those with and those without adequate health insurance. Exceptions exist, myself for example. I have health insurance, hospitalization only, that does not do me or my wallet much good when I get sick. Yet I consider myself lucky to have inadequate insurance because most paralyzed people I know have no insurance. The reasons for this is simple: health insurance companies consider people with a disability to be a poor or costly investment. The stigma and obstacles accessing health care for people with a disability does not end with insurance. Like it or not, within a medical setting people with a disability, especially those that use a wheelchair, symbolically represent failure or the limits of medical science. Doctors, nurses, therapists and all those dedicated to healing people do not like to be reminded of such limitations or failures. This belief is not directly addressed and festers below the surface of many interactions I have had. The negative perception of disability also affects the sort of health care people with a disability receive. When one thinks about serious or life threatening illness most people assume everything will be done to save their life and every possible procedure will be performed. For many this is a given. I do not share this belief. I have a very different set of worries: I worry I will not be treated. I worry I will be allowed to die--to end my suffering. The fact is my life is not valued--it is thought by many to be some a tragedy and that I have endured and suffered. If seriously ill why pull out all or any of the stops for such a person. This is not science, supposedly objective, but opinion--a deadly opinion. To me this proof that medical science deems some lives worth living while others lack value.

Surely this bad cripple is being paranoid. Sorry but I think not. Why just the other day I was out to lunch and the person I was eating with went to the rest room. The person at the table next to where I was sitting leaned over and handed me a business card. He stated "if you ever want to pray for a cure and end your suffering give me call". While this encounter was not an ordinary experience it highlights the fact many people think death is preferable to disability. I have been told countless times "I could never accept using a wheelchair" or "I would rather die than be paralyzed". The prevalence of this belief is far more common than I would like to think much less accept. This thought has been at the forefront of my mind in part because of my encounter at lunch mentioned above. But I was inspired to write about my concerns after reading an interview with Michael de Ridder, head of the emergency ward at Berlin Hospital and author of a new book on dying in Spiegal. In Ridder's estimation death has become complex, people are needlessly suffering, and patients should be allowed to die with greater dignity. Ridder states that a doctors primary mandate is to heal but "to allow someone to die well is equally important in terms of ethics". In Ridder's estimation doctors are not well equipped to handle the ethical conundrums they often face when dealing with end of life issues. Thus Ridder believes we need a concept for the treatment of "hopeless cases". What I wonder is exactly a "hopeless case"? According to Ridder decisions on hopeless case can be on empirical grounds. That may make Ridder feel like a highly ethical being but such logic scares me. Worse yet, is an example Ridder provides. Over a year and a half Ridder got to know a patient very well. The person in question, a woman, was "a brilliant scientist, who since an accident two years ago, has been paralyzed from the head down and is completely without feeling. She wanted the artificial respiration shut off but she was refused, as this is clearly illegal. She was literally reproached for being the only patient in the ward who didn't want to live. She is breathing on her own again. But she says that she can't touch anyone anymore, she can't do her work anymore, she can't even lift a pebble. She doesn't want to live like this. Mind you, it's a life that wouldn't even exist without advanced medical procedures and it's one that she can no longer end on her own. In that situation, I can't exactly order that the woman should be turned so-and-so-many times a day, that she be fed and that she should lie there for another 40 years, just because we have the technological know-how and want to satisfy our ethical standards."

Ridder may think he is basing his views on empirical observations but in my estimation a value judgement is being made. The life of the woman discussed is not worth living. The fact that the overwhelming majority of people faced with the same situation choose to live is conveniently ignored. Compassion and care has been perverted. Ethics has been stood on its head in the guise of physician assisted suicide. At issue is not how to live but how to die. And this line of thought that is sweeping health care here and abroad scares my crippled ass. What happens to the next paralyzed person who comes under the care of Ridder or another physician that holds similar thoughts. Will such a patient be treated equally? In a word, no. Will I be treated equally when I enter a hospital with a serious illness? Sadly, I think not. I know I will have to fight for my rights and assert myself. Now this is an ethical violation worth discussing. It is also against that pesky law known as the ADA.

Money, Money, Money: Problems Abound

In contrast to the vast majority of people with a disability, I have a degree of financial stability. Having a PhD from an Ivy League school certainly helps though my area of specialization, anthropology, is dying a slow painful death. While I worry about money, I am keenly aware I am lucky--very lucky. I own my own home, car, and more often then not have an adequate amount of work. I am concerned with the cost of my health care but know if I needed significant financial support my family would be supportive. This allows me to sleep at night yet I still worry. I don't worry about myself (too much). I worry about all the other paralyzed people without jobs, health care, education, and the financial resources needed to makes ends meet. Last night as I fell asleep I began to wonder how do other paralyzed people do it. I have been paralyzed for 30 years and began to think about how much I have spent on paralysis related products and services. My first thought was about my Roho Cushion. They cost about $350 and last two years. I have probably owned 25 to 30 of these cushions as they often do not last as long as advertised. The next biggest expense would be urological related. This includes catheters, tests and regular check ups with the urologist, antibiotics, etc. Add in wheelchair costs which are not too bad given the fact I farm out such work to anyone but a durable medical goods company and I shudder to think of the overall cost of my paralysis.

Am I complaining? You bet I am. But what makes the above worse for many is the inability to find adequate employment. And in this country no work means no health insurance. In this case, two strikes and you are out as in out of your home and into a nursing home. Scary thoughts and a fate I truly fear. I have been thinking along these grim lines since I read about what an abysmal job the Federal Government is doing at hiring people with a disability. According to the Federal Times, the number of Federal Employees with a disability in 1998 was 0.96% In 2007 the number was down to 0.92% In 2006 the entire Federal Government, that monster that dominates American lives, hired a whopping 1,300 new employees with disabilities but almost 2,100 employees with a disability left that year. I cannot help but speculate that the private sector hires even fewer people with a disability. Think about it this way: 12% of Americans between the age of 16 and 64 have a disability. Does any reader think even 10% of the work force in this country has a disability. Not a chance. I would think the employment number is quite like that of the Federal Government--less than 1% This is a national disgrace that is destroying lives. We Americans define ourselves by what we do. If you ever want to end a conversation with a person you barely know tell them you are unemployed. The respect factor is non existent. What bothers me the most is why? Why are people with a disability absent from the work force. Everyone I know with a disability wants to work. Many cannot find work. Some have given up. The result is personal devastation and the spiral downward is shockingly fast when you figure in the cost of being paralyzed.

Each year I teach I ask students at the end of the term how many paralyzed professors they have ever had. To date, not a single student has ever come across a paralyzed professor before me. This invisibility is a huge issue--we do not as a culture associate people with a disability as being professors, doctors, lawyers, business men or women, etc. That is we do not think of people with a disability as being productive members of society. i.e. workers. Thus disability is seen as a problem, one that must be solved. Disability is a problem but one that is social. Disability is very real social and practical problem that keeps people with a disability from entering the labor force. Start with a lack of mass transportation and housing then throw in the refusal to make basic accommodations at the work place. The result is rampant unemployment, a problem that has not changed in thirty years. Sure we have lots of laws but those laws cannot force the social change required to really empower people with a disability. For that to happen we need a social revolution, one I hope to see.