Hopelessly Flawed Health Care System and Decision Making

I have had way to much contact with our health care system since last summer. First i had urological surgery and then a severe pressure sore I am still dealing with. In the last few months all those I have met that work in the health industrial complex agree the American health care system is deeply flawed. The words I have heard the most to describe our health care system are grossly dysfunctional. Few agree with me that we need to somehow move toward a single government run system. Even fewer like what Obama has proposed. When I state my endorsement of a single payer system the reaction is often one of silence or polite indifference. A few will venture a negative comment about socialized medicine while others point out that the government also runs the department of motor vehicles and query "how is that working out for you". I usually reply that I trust the government more than I trust health insurance companies and policies that are designed not be utilized. This exchange is pointless as nothing is accomplished. I do not pretend to have the answer to our current health care crisis--and there is no doubt the word crisis applies. I do know something has to change. I feel very strongly about this because I am virtually uninsurable. Insurance companies have the right to make money but we Americans I believe have the right to be able to afford adequate health insurance. Our government has utterly failed to protect half the population and people like me that are locked out of insurance industry. There is no question to me that health care is a basic human right. From an economic point of view I understand health insurance companies are designed to make money--this is why such corporations exist. But the health care industry must be regulated in a way that all Americans can access the system equally. Too many I know fear getting ill. People fear illness because they worry about the costs involved. This is just wrong.

What we need is a massive cultural change when it comes to how we perceive the health industrial complex. We need health care professionals to become human again. I think it is just too easy for us to complain and not demand social change. When I was ready to be discharged from the hospital in the Fall my choices were stark--go to a nursing home or get a clinitron bed and have family care for me. This was not really a choice. The surgeon following my care said simply "that's the way it is, there is nothing I can do". The discharge planner did nothing--explained what was and was not covered and told me "that's all I can do". Sorry but that is not acceptable. We Americans value personal autonomy almost as much as we value life itself. This throwing up of hands and saying "that's the way it is"is not acceptable and must change. There is much debate within bioethics about the degree to which doctors advise their patients. Doctors now routinely lay out the options as though we are playing the old TV game show Let's Make a Deal. This is done under the belief that patients are the best person equipped to decide what is best for them. In theory this is correct--in theory. But how many people understand the nuances, meaning, and ramifications of those decisions. In the end we end up feeling very much alone and isolated. Most of us die in a hospital, unaware and medicated into oblivion. For the vast majority unfamiliar with hospitals they are unable to know what is the "right thing to do". I am not suggesting we put such decision making back into the hands of doctors and the health care industry. What I am suggesting is that we need to have health care professionals empower people to navigate a complex cultural system that is not only vastly different but scary. In my estimation few doctors are capable of doing this. They are in many instances oblivious to the needs of those they are charged with healing. Patient care representatives are no better--they are adept what deciphering what one is and is not covered for by a given insurance company. They do nothing more and nothing less. Their job is to get a person out the door without any fuss. What happens when they leave the front door is of no concern.

I am naive? You bet. But I am also hopeful that if enough people get fed up and refuse to be abused by health care industrial complex change will be forced upon corporations that simply do not care one iota. I know this because I am spending much of my time fighting my health insurance company and the wound vacuum company KCI. If I have learned one thing it is that these companies do not care one iota. They are nothing short of evil. They want one thing and one thing only--payment. KCI has earned my particular wrath as they are stunning in their disregard for the humans that use their products. Those that I have spoken to at KCI have no heart--no soul. The corporate mentality has infected the people that work for KCI to the extent they have no empathy. None. To me this is a symptom of a much larger grossly dysfunctional health care industrial complex. This complex can be changed. We must demand it. How we do this I do not know. I do know we as are all cultural systems capable of such change. Look at the newspapers and read about what is transpiring in Egypt. I for one never thought such change was possible. A friend of mine has written about the situation in Egypt and noted we have had American Pharaoh in place for decades. If Egyptian citizens can rail against the government and force such a cataclysmic change i posit the question--why can we Americans not demand comparable change in our health care industrial complex?

Taxis In NYC

Hailing a cab in New York City should be easy. It is easy for all those that are bipedal. If you ever want an exercise in frustration I suggest you use a wheelchair and try hailing cab. Good luck with that effort. I for one have given up. I refuse to give my money to rude cab drivers. Every experience I have had with cab drivers in the city has been overwhelmingly negative. Last time i took a cab the driver spent the entire ride telling me what a hassle it was to "help" a person like me, that he lost time "helping" me, and that they should have "special" taxis for people like me. I told this man I would be thrilled to use a "special" taxi but of the 13,237 yellow cabs only 230 are wheelchair-accessible. Gee no wonder i have trouble.

The situation hailing a cab in NYC is unlikely to get better any time soon. The city is in the process of choosing the cab of the future and of the three finalists only one is accessible. It is unlikely this accessible cab will be chosen. The city has suggested and had a stealth experimental dispatching number people with a disability could call when they needed a taxi This was in the estimation of the city a reasonable accommodation. If this is reasonable to you I think we have vastly different interpretation of the word. Now Senator Tom Harkin has backed the accessible taxi. This is great but for one thing--Harkin is from Iowa not New York. I applaud Harkin's support but doubt it will do much good. I wish I had an answer to the problem of hailing cabs in New York and other cities such as Chicago. I do know other cities present no problems--mostly Western cities such as Seattle and San Francisco. I also know cities like London present no problems either. Perhaps we need to study the issue of why--why is this a problem in some cities and not an issue in others. In the meantime i will continue to use MTA buses that provide slow but reliable service.

A Room with a View

This is what I look at from my bed in the living room. My house is oriented to the northwest so the sunsets are wonderfully colorful. I have a set of three six foot sliding doors in the living room that open up onto a deck. My house is on a ridge and I can see for miles. Every day I look out my window I realize I am a very lucky man. I may be stuck inside and house and bed bound but it is a beautiful place to be stuck.

We are having yet another snow/ice storm. For the first time my roof had to be cleared of snow. My brother spent hours on my roof yesterday shoveling snow. Thankfully I have no gutters and a slight slope roof incline. Of course this is easy for me to write as I was not the one on the roof. Schools are closed today and I have not seen a car go by since I saw a plow go by at 5AM. How I love winter! My love this year is tempered by the fact I have been a mere observer this season. Next year I am going to ski to my heart's content. Who knows I may even get to ski in late March. Ah, dreams on an icy day.

Inspiring, Heroes, and Men of Steel at the X Games

The X Games were on this afternoon. I spent much time reading and watching the games with limited interest. I like the X Games but have a short attention span. My main reason for watching is to see the mono skiers compete. These athletes, world class athletes, are not only gifted but on the cutting edge of adaptive ski technology. For the most part, the announcing was good. The principle focus was on the competition and the technology and skill involved. For the first time, a short special segment was included that explained how mono skis work. For a general audience, the mono skiers were compared to stand up skiers. I came away impressed and the segment reinforced what I already knew--adaptive skiing is physically more taxing and technique is of paramount importance. The only problem I had was the announcers made a point of stating how "inspiring" the adaptive skiers were. Apparently "they all deserved a gold medal" and one announcer crowed "they were true heroes". Oh spare me! The men that competed are athletes--gifted athletes. I have no idea what sort of men they are--they may be great guys or they could be not so nice people. I also know they are no different than any other athlete that competes during the X Games. However, only the adaptive athletes were labeled "inspiring" or "heroes". To me this is as bad if not worse than being labeled "special". It is in essence demeaning. Athletes that walked onto the slopes were not inspiring or heroes. They were just athletes.

The coverage of the adaptive athletes made me cranky. Combine this with a penchant for people to describe me as "strong willed", "tough", "hard assed" or that what I am experiencing with my skin is "unimaginable". I think all of these statements are way off base, dead wrong in fact. I am not that tough nor am I strong. Strong men do get depressed. Strong men do not cry. Hard asses do not feel sorry for themselves. I am guilty of all these things and more, far more than I am willing to admit on this blog. I have been unkind to friends and family. I have lashed out at those who want to help me. Worse yet, I have said things I deeply regret. The reality is I am a man with no options. I must stay in bed if I want to heal. I desperately want to heal. In short, I have no other choice but to endure day in and day out. I am enduring but I am miserable. Yes, I know there is an end to my time in bed and that I will be healed in a month or two. To me, that means more dependence on a daily basis. The knowledge I will heal at some point in the future does not help me be happy when I wake up. The reality is I am doing the best I can. It is what any other human would do. It is what paralyzed people do. It is what people that can walk would do. My experience, paralysis and the way I cope does not make me anything other than human-a deeply flawed one at that.

Undermining Be Gone

I was at wound care today. The surgeon that has followed my care, did the bloody debridements, has not seen my wound since December. This is a long time and what she saw today was nothing short of wonderful. The biggest obstacle I have encountered to healing, significant undermining, is virtually gone. My wound is largely superficial and about the size of a small meat ball. The wound bed remains "lovely" if not awesome. To me it just looks like raw chop meat. Regardless, the biggest problem, one that could have required surgery, no longer exists. Hence no surgery for this man. Indeed, there is a good chance the wound will be healed in one month. Yes, one month, four weeks, 28 days. This means I may ski in March. Spring skiing here I come! Okay, maybe this will happen. I have come way too far and been stuck in bed for way too long to take any risks. At worst I know I will be kayaking come spring. Life is looking quite sweet right now!

Here is a a vow. I will never ever put myself in the position I did last Fall. I will take photos, use mirrors ask family to check my skin. I have learned the hardest of hard lessons. This has me thinking: imagine a health care system that cares about paralyzed people. Imagine the lives saved if every paralyzed person had their skin inspected by a professional. Think of the savings. No wound care needed, no hospitalizations, no time lost at work etc. Yes, this is a pipe dream but nothing can spoil my mood today.

I also had a sweet if not wonderful exchange with two kids and their mom. My look has changed since the fall. No more long hair and pony tail. I now have short hair and a beard. My beard is white, my hair dark. The two girls I met were three and five. Theses kids were cute as a button and dressed in snow gear. After they cheerfully exchanged pleasantries with me they whispered to one another. I asked what the whispering was all about, they looked at their mom who gave the nod of approval and the three year old said I looked like Santa. Oh, how this made me chuckle. I can see it now-next Christmas I will dress up as a paralyzed Santa.

Stupid Stuff and a Great Divide

I have been living independently since i graduated from college. I have been lucky enough to have had and have a great life. Part of my great life revolves around being paralyzed. I do not perceive my disability as a negative--I never have and never will. It is just the way it is-I am paralyzed and that is a fact. I consider paralysis to be no different from any other human variation. Tall versus short, male versus female, fat versus skinny. We all exist on a continuum of sorts. Along with paralysis comes some unique issues. Urological complications abound which can be managed. Skin issues require constant vigilance. So what I say. No human body is perfect nor do all bodies function well. Mental illness can cause havoc as can cancer and a host of other physical issues. My bodily concerns are just more obvious and certainly unusual. As a result accessing health care--good health care that is--is more problematic. Too many doctors and health care professionals see me and think one thing--trouble. The point I am trying to make is that life as a paralyzed person is different. To me my body is normal, to others it is not. Doctors are pretty good at masking their views--they hide behind a cloak of professionalism. Your average person does not hide his or her views. Over the last three decades a veritable revolution has taken place in terms of disability rights. When I was paralyzed at the age of 18 I had no rights. I did not have the right to a public school education, I could not access mass transportation, and the country was grossly inaccessible. Simply put, disability rights did not exist. Today things are much different. I have civil rights that are protected by the ADA, I can access mass transportation and social barriers crumble daily. Yet barriers remain common place. As a result, I feel as different and apart from mainstream society as I did when I was 18. What has changed is the way that difference, my paralysis, is negotiated socially. Sometimes I encounter stunning bigotry and at other times my disability is not relevant.

What prompted the above thoughts? I am dependent upon others to help me. Nothing that my friends and family now do is important. What they do is ever so ordinary--the things I once did without thought. They go to the supermarket for beer or pick up my favorite rum, Sailor Jerry. They go to the post office, hardware store etc. All the errands I cannot run they do for me. On top of this family and friends do stuff around the house--change light bulbs, bring in fire wood, vacuum, clean bathrooms etc. I am exceedingly grateful for what people do. I could not exist without this help. But as I feel asleep I thought I am without a doubt a picky pain in the ass. I like things done a certain way. I acknowledge this as a weakness though when it comes to work it is an advantage. I can find citations from 20 years ago in a second and have copies of every article I have ever written. This attention to detail filters into how i keep my house. My home may not always be the cleanest place but it is always tidy. I know where everything is. Shoot I can find anything in the dark in the middle of the night. Given this, the way others help me makes me nuts--my friends and family do not know how, why or where i keep thing. Ad in my unique placement of household items as a paralyzed person and life can frustrating. However, after four months the frustration level is gone--I think where people put things is funny. My poor brother is "firewood man". He hauls in a lot of firewood. He does so with a smile on his face and never complains. In exchange he drinks my beer and eats my cold cuts--food he picks up and delivers to my house. He also drives me nuts. The other day he put away a rice dish I made (he also did the dishes without me asking). He put the rice leftovers on the top shelf of the fridge. He may as well have put the rice on the roof. He turns out lights not by switch on the wall but via the light itself. I cannot reach the light. This is not in any way a complaint. Instead it highlights just how different I am. He puts stuff on the top shelf of his fridge all the time. He is doing this without thought. Amazingly it is not just him. I even catch myself thinking like I was still bipedal. Years ago my son and I cleaned our hardwood floors. We used butcher wax and moved every piece of furniture in the house. On our hands and knees we buffed the floor. The wood shone like new. At the end of the day we stopped to admire out work when I saw an adult boot print on the floor. "Damn it, I yelled. Look what I did to the floor with my shoe"! He looked at me and I looked at him and after a long pause we both burst out laughing.

I am not sure what to make of my bodily difference. I do know when I am treated with an utter lack of respect due to the fact I use a wheelchair I get mad--very mad. I find such bigotry hard to fathom. But then all bigotry makes no sense to me. I think we humans fear difference and much of bigotry is based on that fear--the lack of familiarity with a given difference. What I concluded last night was that we need to have paralyzed people occupy all social and economic strata. Once we become commonplace our existence will not be perceived as being different. For that to happen we as a society need to radically rethink what is known about disability. We will need to support all people with a disability. We need to value the existence and contribution people can and do make. We need to stick together for I think a common bond exists between all people with a disability. Ed Roberts long ago called this bond "cripple power". A true visionary, Roberts was right. There is power in being crippled. We need to harness that power, form a strong political alliance and change the world as we know it. Now that thought gave me pleasant dreams.

Invisible People

My views about disability within an American cultural context have shifted significantly since 2007 when I read about growth attenuation for the first time. I was shocked--stunned that parents and doctors could come up with something the media dubbed the Ashley Treatment. Actually it was not the media but the parents that coined the term on a blog that was deeply disturbing. What disturbed me was not the child in question nor her profound disabilities. Instead it was the parental response and the doctors who accepted a medical model of disability without any consideration of the social implications. That is what does growth attenuation directed at a specific population of people say about American society--a question worth asking given the finality and ethical implications of such a decision. I cannot competently comment on the medical aspects of the Ashley X case. I must trust the doctors charged with the child's care and believe they truly were trying to help the child and family. I can however question their decision making strategies and the assumptions made about what life is like with a disability. Sadly the medical establishment is slow, painfully slow, to acknowledge people with disabilities have the same goals and aspirations as those without a disability. It is as though they, doctors, nurses, social workers, therapists and all those that work in the health industrial complex, cannot look past the given physical deficit and consider that society is as problematic as any disability. What good I would posit is to give advice to a paralyzed person to remain off a pressure sore if they cannot miss work or need to care for their family. Such advise in a social vacuum is worthless. Likewise, why is it that we as a culture fear those with profound cognitive deficits? Why can't we acknowledge people with profound physical and cognitive deficits have inalienable rights? Ashley X had rights and those rights were violated. I have rights and those rights are routinely violated. I am seen by some, few I hope, as damaged goods--a problem that needs to be solved and then quickly forgotten. This is why I have bonded with Ashley--we are different but our rights are the same. The same as all those that walk, talk, and work.

Why do those that walk, talk, and work demonize those with cognitive disabilities? A factor is surely fear. We Americans fiercely protect and defend our independence or what ethicists label autonomy. We will do anything to protect that independence. But what of those that cannot be independent? What do we think of them? Well, based on my reading within the medical realm we do not think of them at all. We create groups homes, special schools, institutions, nursing homes, all warehouses to sanitize society's discomfort. I know this because some people are uncomfortable in my presence. Some would prefer it if I simply died or disappeared. I know this for a fact as I have been told this point blank. I may be stigmatized in the estimation of some but it pales in comparison to those who have profound disabilities like Ashley X. I read many parental blogs written by parents of children with such disabilities and they are moving and heart breaking. I am moved not out of sorrow but of the social isolation having a profoundly disabled child needlessly causes. Why I wonder can these children not be incorporated into schools and other social institutions. The answer is simple--we as a society choose not to. Thus this population is invisible. Claire Roy at Life with a Severely Disabled Child recently wrote:

NOW, show me a picture of a kid in an involved wheelchair, with a vent, a g-tube pump and a suction device. Show me a kid with combined severe cognitive and physical disabilities. Talk about dystonia, spasm, tone, seizures, scoliosis, drop foot, silent aspiration. Show me the parent(s). Show me how they are living. In short...show me something that I can identify with. Show me something that acknowledges the existence of this type of disability and everything it entails. Openly discuss struggles as well as joys. Tell me, tell my kid that what is important is just getting on with our day to day lives as best we can, even without a specific contribution or goal or happy-ending-in-sight. We can be "happy" and "successful" if you broaden the definition of those words.

The images Claire Roy wants to see are nowhere to be found. When I read the above I admired the passion--here is a woman that loves her child unconditionally. She is thus like any other parent that wants what is best for their child. But we as a society have failed Roy, we have failed her daughter, we have failed the father, we have failed the family. These thoughts led me to reread the Hastings Center Report on growth attenuation yet again. I was struck by the similar larger thoughts--and her Roy must be screaming NO! But there is a shared belief between Roy and the Hastings Center Report's findings--findings that have been ignored. Here I refer to the statement that "It is clear that these families [those of children with profound disabilities] need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities". Okay, there is no passion here and one could quibble with the language. Regardless, both Roy and the Hastings Center Report decry the lack of support for those with profound disabilities. No group in my estimation is as socially isolated. And let me tell you in recent months I have learned far more than I ever wanted about social isolation. Thus Roy's words hit home hard especially when all I read about are budget cuts that affect the most vulnerable--people like her daughter and, well, me. Like Roy's daughter, my care is compromised by a health care system that poorly equipped to meet the needs of those that are different. In the USA people such as myself are effectively cut off from accessing adequate health insurance. Medical facilities remain grossly inaccessible. For instance, I have never been weighed at a routine check up. In fact I have seen one working scale in the last 30 years. To me this is no different from segregation--and we all know that segregation is inherently unequal. It is the legal bedrock of our educational system. But we people with disabilities are ever so "special". By special I mean segregated and in some cases invisible. I am not invisible nor should Ashley X, or Roy's daughter be invisible. We are humans and as such we have civil rights, human rights according to the UN. I doubt the social struggle parents of those with children with profound disabilities will go away any time soon and I sure as hell know growth attenuation is not the answer. What I am railing against is nothing short of a needless social tragedy. I consider these parent great allies in the struggle for disability rights. And I hope to some day see a real civil rights movement take place--one that will be splashed across the headlines of national newspapers and cause college students to protest. This is perhaps a fantasy as the disability rights movement is virtually a stealth movement--unseen by the mainstream. So aas part of my new found effort to be positive I dream of the day all Americans support the rights of those with a disability.