Tabloid Propaganda and Paralysis

Like many men, I read tabloid sports sections. In New York that means I read the NY Post and NY Daily News. The writing quality is not impressive. I am certainly not breaking any new ground here with this observation. Sports reporting relies heavily on well worn themes--praising the under dog, over coming injury, winning in spite of long odds etc. Redemption and overcoming are constants and often the subject of special interest pieces. A few weeks ago I read one such story. The story, "A Life Back on Track" February 6 NY Daily News, annoyed me to no end. The article by Wayne Coffey was about Andrew Lakeman. Lakeman was a New York based jockey. I use the past tense because in 2007 he suffered a bad spill at the track--that is his horse fell and " his body was crushed as if it were a potato chip". Lakeman suffered a complete spinal cord injury. The tone of this article is so over the top it is hard to believe. For example, Coffey wrote: "It's almost impossible to imagine anyone overcoming more than Andrew Lakeman, who knows little of what the future will bring beyond this: he will spend every day of it in a motorized wheelchair, paralyzed from the chest down". Please enter here soaring melodramatic music. I do not mean to diminish or belittle Mr. Lakeman. Any paralyzing injury requires a tremendous adjustment and time to accept. I do not nor I am sure does Mr.. Lakeman recommend the experience. But what the article does not delve into at all is why--why is paralysis so difficult. Why is it "impossible to imagine" how a person "overcomes" such an injury. I would maintain the hardest part about a paralyzing injury is not paralysis but rather the way society responds to paralyzed people. The article in the NY Daily News highlights the inherent social problems Mr. Lakeman will encounter. I find this ironic in that the article also chronicles with Mr. Lakeman's struggle with alcohol and drug abuse as well as bulimia. All these issues are handled well and respectfully. If one reads the article carefully it is obvious paralysis is terrible, a fate worse than death.

There is no way Mr. Lakeman can be average, normal if you will. There is no way he could respond with nuance to his disability and spinal cord injury. His friend, Kristina Dupps, a former trainer makes this clear. She is quoted as saying: "He's either going to shoot himself or make something good of his life". The fact is reality for people with spinal cord is somewhere between. It is not a world of extremes. What is extreme is the social reaction to Mr. Lakeman's injury. He apparently has the choice of giving up, committing suicide, something he considered, or overcoming his disability. Mr. Lakeman is no longer human for he has entered the dreaded territory i refer to as the "Super Crip" image. I have railed against this concept again and again. The "super crip" notion is a gross generalization that defies reality. It is also inherently dehumanizing. A paralyzed person can not lead a normal life and is reduced to the "super crip" who puts all those other weak willed lazy crippled people to shame. Mr. Lakeman is a hero! He refuses to give up. He wants to work at the track and train horses. Wow, is this not amazing! He is a saint because he is "happy to be doing what I'm doing now. I really would't change a thing. This is what I love". My question is simple: what other choice does Mr. Lakeman have. He is a good horseman and has spent his entire life around the track. It seems to me becoming a trainer or selecting any of a number of other jobs at the track is pretty reasonable response.

What bothers me about articles such as the one described above are the assumptions made and not so subtle subtext. Life after paralysis unbearably hard and an ordinary life is not possible. Those that attain such lofty goals such as a job and a complete life are hailed as super humans. Mr. Lakeman I am sure would agree is as flawed as he was before he was paralyzed. He is no different than any other trainer that can walk. Here is fascinating fodder for an article. How many paralyzed trainers are there in New York and elsewhere? What obstacles did they encounter at the track. Was it hard for them to find trainers willing to trust them with horses that routinely cost hundreds of thousands of dollars. I can think of one other name horse trainer based in California who trained Derby horse Brother Derek. Is there an association of paralyzed trainers? Mr. Lakeman trains one horse. How is his quest for owners and other horses going. Such questions are not addressed. Instead we get unfortunate lines such as: "Andrew Lakeman doesn't ride horses any more. He trains them. He moves his chair onto the platform and is hoisted up, and rolls forward and turns on the ignition [to his car]. For Andrew Lakeman, everything is new, his life free of alcohol and bulimia and free of limitations, too, no matter what the wheelchair suggests".

What exactly does a wheelchair suggest? To me it signals Mr. Lakeman simply moved on after a severe injury. It means he has a job and, like others trainers works long, hard, if not brutal hours with high strung animals that are worth a small fortune. The pressure Mr. Lakeman deals with is intense. But this is not the message the general reader will come away with. Mr. Lakeman is reduced to a stereotype--the "super crip". Thus the real hard questions are not addressed. Why are people with disabilities routinely unemployed? Why are housing options severely limited? Why is independence a struggle? Why is mass transportation still difficult to access twenty years after the ADA was passed? These are issues passed over and deflected. Coffey wrote that Mr. Lakeman "knew he wanted to be independent--he rejected the idea of returning to England because he did not want his parents to care for him:". This begs the question why Mr. Lakeman could not be independent in the United States. What support services were available? If there were none why was this the case. And more to the point why does it seem as though accepting such dependence was a reasonable response to paralysis. Like every other american I know, we fiercely value our independence.

Do not take my words as a critique of Mr. Lakeman. He works in a tough industry. The race track is littered with people who have substance abuse problems, marriages fail often under the stress, and a nomadic or seasonal lifestyle is the norm. While majestic, thoroughbred horses require intense effort to maintain at peak performance. The hours people work at the track are long and hard. Success at the track is based on one thing--wins. Those wins are hard to come by. If I were Mr. Lakeman I would be delighted by the article in question. It raised his profile and he may attract the interest of a horse owner. But I am not Mr. Lakeman. I am not a novice to paralysis and have spent 30 years thinking about the social ramifications of paralysis. I utterly reject dominant sociocultural norms associated with disability. I hope with time a more nuanced understanding of disability will emerge. For that to happen the content of articles such as the one discussed need to shift fundamentally. The questions asked need to be about the social implications of disability and not rely on outdated stereotypes. Such articles may sell papers but are ultimately destructive to the people with disabilities that merely want to lead an ordinary life.

The Human Body: Can Disability Be Cool?

When I think of my wheelchair I think one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery. I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.

My thoughts above have me looking through various body art books. I have an intense interest in body art and modification. I am thrilled and appalled at the way tattoos and body art have gone mainstream. I am thrilled because tattoo as an art form, a fine art, is now widely acknowledged. I am appalled because an under ground art form has been transformed and commodified. One can buy tattoo purses, wallets, sheets, lap top covers and Sailor Jerry rum to mention but a few items I have seen. The American Museum of Natural History even had an exhibit many years ago that thrilled me--until I saw the gift shop and how much it cost to enter the exhibit. The rise of body art has caught the attention of many academics. These academics talk about the post modern or post modern physical body. I lecture about this in one of the classes I teach, Body Art and Modification. I always hold this lecture off for the end of the term. It is a hard concept to grasp, the post modern or post physical body. I quickly learned to use popular culture references--the Terminator movies or any other reference to cyborgs. Students get this. They are all over this as it excites their imagination. I refer to prostheses, chips implanted in the brain, hearing aides, glasses, pace makers etc. The technology students get--they get it way better than me. It is an integral part of their life and upbringing. But they fail to see the whole picture--or least struggle with it. What do they struggle with: In the words of Stephen Kuusisto:

The post-physical body is a confluence of material reality and imagination but it is also co-determined by or within politics. The production of material culture is therefore still a matter of 19th century economics. Accordingly the cyborigian person with a disability is a hostage of sorts. We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).

Students, and I would venture to guess the average person, does not get the hostage reference used by Kuusisto. Sure technology is cool. The mix of technology and the human body is even more cool. But that interplay is subject to many other variables. Politics, culture, and economics are major influences. Wheelchair technology, especially power chair technology, is amazing. It can transform a person's life just as my wheelchair has changed mine. But what good is that technology if it is so expensive it cannot be utilized. And wheelchairs, wheelchair cushions, and the bed I am in right now are way past the budget of most people. This does not begin to address the issue of health care coverage of supposedly "complex technology". Worse yet, wheelchairs and associated needed adaptive devices are not seen as empowering by business people and politicians. They are seen as just costly. Socially there is stigma attached to some technology. People do not react positively to a power wheelchair. They are big, bulky, and powerful. People seem to want to leap out of the way or stare. I saw this first hand this weekend--I was able to get out and I was at the Home Depot. A man with his family was shopping. The man used a power chair and it was like watching Moses part the Red Sea. Wherever he went people scattered. This man's wheelchair was empowering to him but to the rest of the world, or those shopping at the Home Depot on Saturday, he was a person to be avoided.

Given the above i am skeptical about the post modern human body. Our acceptance of other bodies is socially based. The technologically to change the human body exists and it may be empowering but that empowerment is socially decided or constructed. To me my wheelchair is cool technology. To others, it is a sign of weakness and infirmity. Are hearing aides the elderly use cool? In a word no and I haste to ad not covered by health insurance. In contrast, cochlear implants are accepted technology and an entire industry now exists to support them. I could go on with multiple other examples but the point i am making should be clear. In only one instance have I seen a mix of technology and disability negate the stigma attached to wheelchair use. This is when I ski--sit skis for some reason are not only accepted but to a degree are socially prestigious. We can see this in the incorporation of mono skiers in the X Games and open acceptance of adaptive skiers at most ski resorts. I wish I could duplicate this elsewhere. In the mean time I am content with my white beard. It seems to have had a good impact on young children. I noticed more smiles from little kids in the few instances when I get out. Of course another interpretation could be is that I am simply getting old and they are smiling at the old guy--and the wheelchair and old age match in their minds. I do not want to think this way and will instead think I am more like Santa Claus.

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.