It's Back to Day One Again

I sat up for the first time in nearly two weeks yesterday. Wow, what a pleasure! My sitting time was of course severely limited. I got out of bed, into wheelchair and then in the back of my car. Why was I in the back of my car and sitting up? Simple: insurance refused to pay for an ambulance to transport me to and back from wound care. If I paid for such a luxury it would have been about $1,200. This does not include th cost of the appointment at wound care--also not covered. Hence I was transported laying down in the back of my car. If we got in an accident screwed does not even begin to describe the consequences.

To say I was stressed out yesterday is an understatement. I did not sleep the night before nor could I eat the morning of the appointment. Accompanied my brother and brother-in-law, all went well. The bottom line is that both wounds are healing nicely. The surgeon is a funny lady--she described the wounds as "beautiful". Flowers I are beautiful wounds are not. Regardless, my "beautiful" wounds needed little debridement hence I lost little blood--my my major concern as the last debridement was a gruesome bloody affair. The time table for healing is vague as we humans, especially those paralyzed, do not heal on a set schedule. I gently pushed for a time frame and was told before the end of 2011. Shock spread across my face and I said I needed something more precise. The surgeon replied with a somewhat less vague 2-6 months. This is fair--vague but I can at least wrap my mind around this. Aside from medical issues, I am still struggling with the great cost of my care. I have made zero progress in this regard. This is alarming though a short term problem. My only success came yesterday when I expressed concern about the cost of bandages for the wound vacuum--I was thrilled to see the wound care specialist used one bandage bundle for both wounds thus saving me 50% of supplies. As I was leaving this persona gave me a big box of supplies--sample she said. Score one for the home team.

I must be getting better physically as my choice of reading is improving by leaps and bounds. I am back to reading typical academic discourse, stories about disability rights abuse, and most importantly getting pissed off. I am thus starting to look beyond my own tale of woe and thinking--a healthy sign. Given this, I will start to write along two lines--posts about my progress and compromised life and a return to disability rights as civil rights. In essence, I am back mentally and resigned to my life as it is for the next few months--yes, the next 2-6 months. I have also not given up on ski season or teaching in the Spring--maybe I can handle one class and some ski runs in February. I need to have reasonable hopes and start writing about disability rights as civil rights. I know this viewpoint will not be found in the mainstream media and have read a few articles from the NY Times in recent days that have annoyed me to no end. On such story had to do with paraolympians competing with so called able bodied athletes. Apparently this is becoming more common though at times controversial. What the NY Times failed to mention is the only time controversy arises is when an athlete with a disability soundly defeats his or her non disabled competitors. When this happens all of a sudden any adaptive device represents an unfair advantage. In a word, bull. Ah, it is good to be getting back to my feisty self.

Reading, Reading and Reading

I must be healthier as I have mad a transition from reading crap to real books. Hence murder mysteries and action adventure novels have slowly been replaced by good books. I started with a biography of Moe Berg, a baseball player and OSS operative during World War II. I then read another wonderful biography about Sam Steward, an academic turned tattoo artist. This text was fascinating in that Steward was gay, kept detailed record of his sexual and personal life. This is a unique text and offers a glimpse into what it was like for gay men at a time when homosexuality was considered a mental illness. I also reread parts of the Body Silent as it related to issues of dependence. I have recently finished Beth Haller's wonderful book Representing Disability in an Ableist World. This book I consider a must read for all those interested in the skewed media representations of disability. And my God, how much more skewed could the representation of disability be in mainstream media. Haller insightfully delves this subject and provides a penchant analysis.

Representing Disability, shrewdly published by Advocado Press, should be used as a required text in mass media and disability studies classes. Haller' book consists of 10 chapters. Some chapters resonate more than others, for instance I particularly liked
Chapter 4, Not Worth Keeping Alive assisted suicide debate as debated in the New York Times. Frankly I disagree with Haller's conclusions but respect her scholarship and admire her obvious respect for Not Dead Yet, a group sadly ignored by the mainstream press. In my mind, what makes Haller's work so important is her ability to get across the deep impact ableism has had on the lives of all people with a disability. Also worth noting here is Haller's discussion of alternative media outlets and internet resources. Whenever I am at a loss to explain why the media screws up a disability related story I now have an invaluable resource to rely on as will all others wise enough to purchase her book.

I am Not Depressed But...

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.