I am certainly not happy. To me, this is a perfectly reasonable response to my current predicament. I have been completely independent since I was paralyzed. Like many other people, I highly value my independence. Indeed, I consider independence central to my identity. Thus I am like most Americans in placing great value on independence. Unlike most Americans however I realize how fleeting independence really is. I have given great thought to why we Americans value independence. For those of us who are paralyzed, temporarily or permanently have lost independence, and the terminally ill we realize what a crock independence is. No one is fully independent. Most people are dependent upon employment to put a roof over their head, some are dependent on family or a spouse, But no one, and i mean, no one can survive without human contact that at some level contains a measure of dependence. The dependence can be large or small, significant or seemingly insignificant but it is ever present. I know this is true as I have experienced being both independent and dependent.
In terms of disability, what bothers me is he double standard that is applied to people with a disability as opposed to those without a disability. Frankly people do not care about the disabled. We are seen as inherently flawed, physically and socially. We are seen but not seen. It is only when disability strikes home that people suddenly get disability is a social malady. What does it matter if one cannot see, hear, or has lost a limb. We are inherently the same person. I am the same man before and since I was paralyzed. I am however not treated the same. This double standard has grave consequences when dealing with the health care system. Fot instance, when I became medically stable the hospital wanted me out the door ASAP. My choices were stark--a nursing home home or purchase a clinitron bed and rent a wound vacuum. This cost big bucks and I had the family to make this happen financially. The case worker and doctor agreed home was the best route. But neither the case worker or MD really cared where I went. The institution wanted me out, what happened afterwards was not their concern. At no point did any one ask or think what would happen to me in a nursing home. Sadly, this reality, moving a paralyzed patient with a sore to the nursing home is the norm. Worse yet, most paralyzed people never leave a nursing home. But it is not jut paralyzed people that face this dilemma. What about the elderly that are commonly disposed of this way. What about the terminally ill? How many can transition to a good hospice center? Not nearly enough that's for sure.
The double standard I am referring to is deadly. It affects millions of people and is a true sign our health care system is hopelessly flawed. When I was in the hospital this was a constant refrain. The system is broken, there is nothing that can be done. All acknowledged this no one did anything about it. So, if I ended up in a nursing home it was less than ideal but it was no one's fault aside from the hopelessly broken system. Well, we the people are all part of the system and someone needs to figure out how to fight back. I tried, and got nowhere. Frankly contacting another human being on the phone was a job by itself. I have never talked to a human being at my health insurance company--I am not sure it is possible. The wound vacuum company, KCI, would not lower their rates for me by a dollar. Thus I am paying exactly the same price as a huge corporation or hospital to use their equipment. All this makes me wonder why we accept a double standard. What happened to basic human decency. Why could a human at KCI not say let's cut this guy some slack. They are giant corporation but as we Americans have learned such entities have no heart or sense of ethics. Indeed, on gloomy days like today I wonder if compassion and ethics are a thing of the past. Worse yet the most vulnerable are most likely to be hurt.
"I wonder if compassion and ethics are a thing of the past"
ReplyDeleteIn the past the techniques did not exist that may have allowed you to survive your ordeal and come home.
In the past no one stopped on the battlefields to tend to the maimed, the wounded, they were simply left for dead.
Society moves forward, including the passage towards a more humanistic society, by having many, many less able people pay the price. They are trampled upon because society and technology is not based on integrating the less able into the mainstream, this is not the Hopi tribe, this is not Waldorf education; what we are dealing with is man's basic drive to move forward, to succeed and conquer.
Integrating less able individuals is still seen as an unnecessary luxury. What this requires is a paradigm shift; if you have one leg you may not want to participate in the new york marathon. And those that do are not proving that disabled can do the same as the able, merely showing that despite disability, they can focus efforts and obtain a great deal.
When you shave your head, how comfortable will you feel in a barber's convention? How much should they go out of their way to make you feel comfortable?
Compassion? Isn't that the opposite of the American way? Where the dream is that you succeed. Above others.
Andrew, I know Joni Tada and her advocacy. We are very different people. I shun religion while she is a devout believer. This creates quite a gulf. I did not know she had cancer--I truly hope she survives and thrives.
ReplyDeleteEric, I agree many people like me did not survive to live at home. In fact the bed I am sleeping in is a technological marvel that by itself is life saving. As for your observations about American society and corporations, they are spot on. A charity model of disability is something we have not moved past. Disability rights is grossly misunderstood or largely unknown.
No, you are paying more than insurance would. They all contract at a fee covered that is generally much less than what is charged. People without insurance, without adequate insurance, or whose insurance refuses coverage pay a lot more. It's literally criminal.
ReplyDeleteWith prepay services like this, you may not have any luck. With what's remaining on the hospital bills, you may.
The reason why the medical goods companies don't have reasonable rates for individuals? Because individuals who need those goods don't have the option of saying no. You can take the goods on their terms or you can die (or you can disappear into an institution).
ReplyDeleteAnd when you're in a position to say no to the company? Well, then you don't need the equipment anymore anyway so they're not going to make any money off of you anyway.
In other words, they don't care about you.
And society doesn't give a damn either because nobody thinks about the people who are in this situation until they, themselves, are in the same situation. By then, what do you do?
You have caught me on a very glower day...