My Life as an Outsider (chapter 1)

'The Hidden Handicap'

I have spina bifida occulta. Like many people with this condition, I was not aware of my status until I had my back X-rayed after a minor injury. The doctor mentioned in passing that I had spina bifida occulta, about which i knew little except that my father had been similarly diagnosed under similar circumstances about 15 years earlier.

I remember him twinge in pain during a game of ping pong. He bent over to pick up an errant ball and let out an involuntary groan. He could hardly straighten up. It turned out to be a pinched nerve.

Unlike the more severe expressions of spina bifida, occulta is frequently benign, which is why so many people don't know they have it. No one really needs to worry if all that's wrong is a small part of a vertebra is missing. If it's just a little bit of the bone it's of no consequence. But if there is a deeper malformation of the bones, then the spinal tube may be affected. Certain nerves may not go where they're supposed to. Certain muscles may not function. Even when this happens it may be unnoticeable to the untrained observer, and possibly overlooked by the sufferer.

Most of the literature on spina bifida occulta mentions that it is usually a malformation of the lower (lumbar) vertebrae. 'Usually' is seldom elaborated on. If it is 'usually' the lower vertebrae, what about when it's not? There is very little information for the lay-person about this.

If the problem is just severe enough, you can expect any of a range associated of conditions to express themselves; lack of bladder control, incontinence, weakness in the legs, severe back pain...to name a few. Also, though obscura is not progressive in itself (The deformity of the spinal bones does not get worse as you age), the tangential conditions are often dynamic. If - for instance - you have missing nerves to the muscles around the lower back, then it doesn't matter how much you work out at the gym, some of your lower back muscles will atrophy. This can result in extra stress placed on the surrounding muscles and other tissues. Over time such stresses add up, causing a cascade of health issues. How much time this takes depends on how severe the condition, and which nerves and muscles are affected.

I noticed as a child that my father had a concave sternum and that his lower costal ribs flared out. I have the same condition. I attribute this deformity of the rib cage not to any direct inheritance, but to the effect of the spina bifida on our developing bones. The costal cartilage and the sternum are very flexible when you're young. The shape of the rib cage is partly determined by the curve of the spine and by the development of muscles around and adjacent to the ribs. In my case (and may father's) certain muscles just below the rib cage are weak enough so as not to properly support it and it splays out around the abdominal cavity. This also causes the the sternum and the intercostal cartilage to bend inward (This is my own theory - the normal explanation for this has to do with low bone density, which neither I nor my father have - I've never had a broken bone in my life despite some serious impacts). None of this is obvious in an everyday setting. i have broad shoulders, and with a shirt on, my chest appears normal. And it is not simply a cosmetic issue. When your sternum is spoon shaped it puts pressure on the heart cavity. There is pressure on the lungs when the movements of the rib cage are constricted.

Grade school teachers admonished me against slouching. I know now that my slouching was due to my spina bifida. I slouched because that was my body's natural position. No one ever suggested to me at the time that there was anything physiologically wrong with me.

I was always uncomfortable in my body. This was interpreted by the guidance counselors as psychological in origin. But I knew they were wrong. Why, for instance, if my inability to do pushups was psychological, was I such a good climber? Why, if my slowness at running was due to lack of will power, was I a better than average bicyclist? I had no knowledge of spina bifida when I was laughed at by others because of my physical awkwardness at sports. My pigeon-toed running - my lousy throwing - my terrible fielding. I was left feeling inadequate at virtually all the requisite sports. Though I could actually swat a line drive that made other kids notice, I was so slow that I was almost always out at first.

I was big for my age - taller than average and overweight. Perhaps this was why my parents decided to enroll me in a children's football league team when I was ten. They knew, of course, that sports had been a source of repeated humiliation for me, but they honestly believed that the problem wasn't so much my natural inferiority as an athlete, but the unstructured nature of neighborhood games. Under the watchful eye of experienced professional children's sports coaches I would be properly tutored and my latent abilities would be allowed to spring forth. I would be able to experience the masculine joy of competitive sports in a healthy positive environment. Shelly's All Stars had uniforms and played on well tended fields out in Queens. Until then I had only played on the worn out grounds at East River Park where the fields were more dirt than grass and you had to look out for broken beer bottles. Or the asphalt playgrounds of my lower East Side neighborhood. And I had to endure the ordeal of waiting while the two team captains argued over why they didn't want me on their team. Sometimes they'd work out a last minute trade to balance things out. And then the taunting of my older brother's friends after each game when I was invariably responsible for the team losing. I knew full well I was a liability and I was reminded of it over and over and over - game after game - year after year.

But at Shelly's All Stars there were only strangers. I had a clean slate. No one knew how inept I was, maybe it would be different there - why not be a little optimistic for a change? The coach will be there to help me.

My football uniform, the helmet, the shoulder pads, all seemed so alien to me, i felt like a gladiator about to be thrown to the lions. My mom sang football songs to me in the car as she drove me to the All Star's headquarters in midtown Manhattan where all us junior leaguers would climb into the Shelly's All Stars bus and be taken to Queens.

"Oh you've gotta be a football hero,
To get along with the beautiful gals!"

It was a sunny day. The grass was beautiful. Shelly (his real name was Sheldon, i think) gave us all a pep talk and assigned us our positions. I don't remember too much about that day except that I was a blocker. I was told to just keep the other kids form getting past me to the quarterback. All I had to do was use my size and my weight and push them back when the came at me. I think I closed my eyes after the first impact of the other kid's face guard against mine. I know I ended up being trampled. At the end of the day I begged my mom not to make me go back. I cried and cried. Why did I have to be put through this over and over? Wasn't it clear that I hated playing team sports? Was it really so important?

After that there would be no more pressure on me to play football or softball. I removed myself from that scene and concentrated on the things I really loved. Playing the guitar, drawing and painting, building plastic models, tropical fish, and riding my bicycle.

End Part One

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Esperanto, Intelligent Design and Eugenics

       
       

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There's nothing wrong with seeing structure in nature. Believing that certain natural structures, particularly in us humans, are indicative of genetic superiority is a bit problematic.

You may think that eugenics has nothing in common with intelligent-design. After all, the eugenicists believe in evolution. Intelligent-designologists don't. But they both believe in humans as the pinnacle of creation, regardless of the mechanism of that creation. And they both place supreme importance on physical structure as a window into our natural superiority as humans.

But if instead of evolving through millions of years of natural selection and mutation, we were 'designed' by some etherial, omnipotent creator with an unfathomable 3D virtual reality simulator and then pieced together using a technology beyond our imagination, why do male mammals have nipples? And why did prehistoric whales have ankle bones?

Darwin believed that there are many complex interactions between species and their environment ( which includes other species ) that bring about the small subtle changes which over great spans of time amount to species' differentiation. Of course, he did put humans at the top of the evolutionary ladder. And the theory of eugenics is based on an interpretation of Darwin.

The intelligent-design folks pay some attention to Darwin when it comes to micro-evolution. But they refuse the idea that protozoa could have ever evolved into fish > into reptiles > into mammals > into us. On one level, intelligent-design may almost seem more egalitarian than Darwinism. Since species don't come from evolution, presumably they were all created in concert. All the symbioses in nature were concieved as a whole by the creator.

But I've heard I-D proponents use the 'Mount Rushmore' argument more than once; Compare the Grand Canyon to Mount Rushmore and you can easily see that one was designed and the other wasn't. Why they can't see the slow erosion of rocks by the wind as a form of design is beyond me.

I-D-ologists also tend to refer to Darwin's version of evolution as something that "couldn't have happened" --- past tense. In fact, any understanding of evloutionary theory accepts that evolution is ongoing, not something that occoured in the past and is now over with - like the Biblical Creation. I-D-ologists like to make a clear distinction between 'natural' processes and 'intelligent' ones. They see Darwinism as a 'naturalistic' theory, as if this is a bad thing. I suppose this is because of their faith in a Creator who is ABOVE nature. Any 'naturalistic' explanation of nature might insult the Creator.

The Eugenicists don't necessarily believe in a Creator, but they don't really believe in Nature (capital N) either. They see Humans (capital H) as nature's (small n) greatest creation but they're willing to accept Darwin. Of course, they don't rule out, nor does Darwin, that all of nature is the work of some divine power. Eugenics is not so much concerned with the history of evolution or creation, but with improving Man (capital M) into the future by weeding out nature's mistakes. Just where God fits into that equation is unclear.

The essential fact of all these theories is that they place us humans at the top of the mountain. Maybe we are at the top of the mountain. But so was Yertle the Turtle.

All this preoccupation with our physical evolution speaks to our need to define ourselves. The difficulty lies with our failure to reconcile our inability to understand the infinite complexity of nature, with our skill at recognizing & creating systems and patterns. We want to define the universe in terms we can, ourselves, comprehend and explain. We make a mistake, however, when we forget that we are not as smart as we think we are. Our logical assumptions about nature never tell the whole story.

Take Esperanto, the universal tongue. A well intentioned effort to unite the people of the world by creating a language not based on nations and geographical legacies, but on the idea of global community.

Presumably, if we all want the same thing - peace on Earth and goodwill... etc - Esperanto would catch on pretty quick. but it seems more likely that we will evolve into another species before Esperanto becomes even a second language for more than a few million people worldwide. I would venture to guess that there are more people in the U.S. speaking Klingon than Esperanto these days. This probably says more about American culure than it does about Esperanto... but the fact is that most attempts at imposing well thought out structures on God's most elegantly designed creatures end up being as effective as attempts to get drivers to all use their turn signals.

Life is messy. things may seem designed, but design is our invention, like Esperanto. English isn't becoming so widely spoken all over the world because it's well designed. English is one of the world's messiest languages. In spite of efforts to rein it in and make it behave, it keeps evolving, imperfect though it may be. English may not have been 'designed', but it is spoken (and mutated) by more people all the time.

I wish only that those who think that they can make the world better by imposing notions of structure - based not on science, but in ideology - would see how futile their efforts really are. the most powerful force in the universe is Entropy.

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nanisani

Nanisani is a word used by the people of the Papuan village of Herowana in New Guinea to describe the unpleasant numbing and tingling effects of the poison of the pitohui bird, which has the same toxin in its body as do the famous Phyllobates terribilis - the poison dart frogs of Columbia.

I can only imagine what that feels like, but I think the toxic effects of popular culture on the minds of the general public might be comparable. I'm not really against pop culture, but I do believe in the importance of culture critique. How else can we come to fully appreciate the difference between the good stuff and the not-so-good stuff and the total-crap stuff?

I spend too much time thinking about pop culture. But that's partly because it's ubiquitous. With advertising everywhere - 'product placement' in so much of what is supposed to be 'entertainment'... when was the last time you thought of yourself as a citizen? When was the last time you thought of yourself as a 'consumer'?

The notion that citizens are 'consumers' is insidious. Sure, we buy stuff. But to define the population of this great civilization as consumers, as is the case in so much of the speech of politicians, is a form of brainwashing. Why not call us 'breathers'? I don't know about you, but I spend more time breathing than buying stuff.

We are poisoned by the messages of consumerism forced on us so relentlessly by the various institutions of higher earning (they earn - we burn). When George W. talks about the 'ownership society' one has to ask; what if what someone owns is me?

I was thinking about this when hanging out with a friend who recently became the owner of her own flat in San Francisco through a 'tenancy in common' arrangement. She is now part of the ownership society. Since I rent my place, I'm not.

Of course, my landlord is part of the ownership society. I'm not sure if he'd be too happy if he was forced to stop owning all his rental properties. It made me wonder what would really happen if everyone owned their own homes. What would all the landlords do? There's a lot of money in renting things to people. And there are often real reasons why some of us cannot own homes. It really seems unlikely that any form of public policy will enable the vast numbers of us living near or below the poverty line to own homes. And if we were somehow able to scratch together enough cash for a down payment - and if the bank could overlook our iffy credit ratings - what kind of homes would we own - and how would our lives really change? After all - we'd still be paying out every month. Not to landlords - but to banks. And if we couldn't make the payments, then what? With more and more people owning homes wouldn't there be a shrinking pool of available rental units? And doesn't lower supply lead to higher prices?

The 'ownership society' idea is just another scam. Just another catchy slogan intended to whitewash policies that are designed to make money for those who already have plenty. Another product to sell the unsuspecting public.

Just more nanisani.

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