Never Walked In High Heels

Over the past five years the word “community” has gotten a terrible name. We talk about community programs and community organizers. Not entirely sure what either name truly means. Grants for everything possible to encourage community living, art that is reflective of a certain community and encouraging projects that will help a community grow. With all this pressure to think of people as communities one thing is for sure, a genuine community is extraordinarily rare.

Just about every major religion stresses the importance of community. Sharing your life amongst other people, your frustrations, conflicts, sadness and joy keeps living in perspective. The world becomes bigger than just you, yourself and your family. There is genuine concern for others that you share your life with and from those who share their lives with you, even without the binding of blood. As far back as anyone can remember, humans were meant to be communal people. Trusting each other, relying on shared resources and even conflicts in order to lead to the betterment of the whole. Living this way means that people know your problems, your strengths and weaknesses, every annoying and gentle part of you. Best of all though, the people you surround yourself with, over time, really grow to know you.

Many say that in the modern world we no longer need to be dependent on other people. But, this is not true. Perhaps physically it is absolutely right, most people can survive working from home and ordering groceries from the Tesco online store. Their food and the necessities of daily living will be supplied. I myself could not survive in such a manner, but of course, I am the exception and not the rule. But even if I could physically, be independent enough to cook my own meals, mind my own house, keep up with a job by living at home. I don’t think I could live, I would survive certainly, but looking at my life now the problems seem overwhelming. The only way to survive this burden is by sharing it with others. The truth is, mentally and emotionally I need to be part of a group of people who are willing to love me, put up with me unconditionally and even chastise me when I’m wrong. I’m not looking for parents so much as I am looking for someone to share my life with.

Of course within the past three years, I don’t think amidst all the craziness I would have been able to get by without the community that I can now recognize and find myself in. This of course might be the absurdity in organizations, grants and governing bodies trying everything possible to jam a community down the throats of its constituents. A group of people living together and relying on each other happens without most of us realizing it. That’s when sharing lives becomes a genuine and easy experience. Of course this means making a sacrifice. Admitting that my life is out of control and going absolutely crazy means that I can no longer lie to myself. It means that people hold me accountable to my actions towards myself, towards them and towards their families, so that I might grow, learn and thrive in a way that I may not be able to if I had all my needs met yet still insisted on living in solitary confinement. It means of course we grate on each other. But, overall, we have formed a community without trying.

There is an ongoing joke I have among my friends that one day I walked into my flat only to find that there was someone uninvited in my kitchen, another one using my internet and a third one lying down in my bedroom. During this discovery a fourth one came over explaining that his shower was broken and was only putting out cold water, wondering if he could use mine. I am lucky to have fallen into a community with women who bake every Saturday and men who drop by when they are in need of the internet or have found out that I have a broken toilet. It does mean that I have made a sacrifice and that the quiet moments are rare. I am challenged continually by the people who surround me, even on the days I would like to go home and avoid everyone. But this assures me that within my community not only do I never have the benefits of an empty house, I will never have the downfall of an empty life.

It is a typical question my parents ask of me at about this time. The family letters go out mostly to people I have never met although heard about in stories from their time in grad school or law school, and in return we get pictures of new babies and blushing brides. It is without a doubt the Christmas card season, which in recent years has mostly been re-dubbed the Christmas letter season. The time of year where you attempt, usually in vain, trying to figure out the mail merge function on Microsoft word just to add a personal touch to a general form letter, thus making it look like you wrote the letter for a specific recipient all along. For the sake of our letter, if anything, I have been working on “This School Year,” I hadn’t thought of my life in terms of school years and grading terms for ages, thus reminding me how little structure and accountability I have in my life as it currently stands. And to be honest, I couldn’t think of a way to sum up my entire existence in one simple line. What was I working on? Part of me didn’t even know.

All of a sudden I feel an enormous rush to justify my self-existence. I want to find a masters program to enroll in, some sort of regime that I cant point to and say “See that? This year I am doing that.” But that is the nature of having a creative life. My life doesn’t fit into scheduled time tables. Some of my most important work happens between the hours of 9 o’clock and 12 o’clock at night. A friend once told me that being an artist is as much a life style choice as it is vocational decision.

He explained that his 30th birthday was spent cleaning toilets and living on the dole and that two years previous, when he was twenty-eight, his birthday was spent sipping champagne and eating strawberries. Being an artist means that you can fall down the ladder as quickly as you can climb up it. The structure and security is completely gone.

I’m sure, regardless of whatever my parents write, many of those who read the Christmas letter will think that I somehow managed to fail them. Growing up I was your typical success story: straight A student, never veering off course, the front row adolescent who’s mind was full of questions and never entertained rebellion. They used to tell my parents, “She’s going places. She’ll be great at whatever she does. I can’t wait to see her in the future.” And right now at least, all I’m great at is provoking a lot of instability in my own life.

By nature of my condition, much of my life has been spent with a sort of warped view of time.  When you are disabled, time slows down and success is largely relative for a kid who was never meant to live much further than her first evening. This means that growing up, taking your first steps at age ten, waiting until fifteen to attempt to ride a bike, still being unable to tie one’s own shoes, and even today, I must find great significance in even the smallest victories. As I wait, often overwhelmed by rejection and closed doors, I am forced to answer myself with regards to whom I’m writing and performing for. When I discover the answer, even the rehearsed readings and showings that occur inside an acting classroom become as important as any opening night on a West End stage.

My life, scattered as it is, has become impossible to sum up in a single letter, much less in a single sentence contained in a letter. I figured this out for myself my first year out of college when I attempted to write my own Christmas letters from the UK. All I could do was write each one out by hand and fill it with questions about the life of the recipient. This took pages and failed to pinpoint exactly what in my life I was accomplishing.

People who only know me by Christmas letters can’t really begin to understand what I am up to, so even a ten page letter I think, would illustrate that really I don’t know what I’m up to and perhaps my incompetency at running my own life would only be barely shown within a ream of paper. Nonetheless my parents pressured me to come up with anything to explain to relatives.  It’s not that my parents don’t love me or they don’t understand, its that they are at a loss to explain what’s going on. Sometimes I tease them, “Tell them that I am one of those people who change the digital clocks on banks every year during daylight savings time. That will illustrate some sort of stable success.” People remain unamused by this answer, looking for a simple one line statement of what I’m up to.

Most of all, I wish my parents just to tell their friends that I am well. Because I am well.

There is something immensely pleasing about running under the golden trees of autumn and watching the leaves fall. It is almost like the entire world for a moment, is showing off and becoming the absolute best that it can be. Often in the early evenings I take long walks and peer into the windows of warmly lit rooms. Inevitably, one sees families gathered around tables either doing homework or sitting down to dinner and on a particular November night; even though I am half way around the world I am reminded that this is the season to stop and give thanks, no matter where you are from, for the bounty that you receive either in the form of friends and loved ones who surround you or simply having food on your table.

Somehow Thanksgiving is always less precious than it’s stressed out holiday cousin of Christmas. You don’t hear over and over about the perfect Thanksgiving, the magical thanksgiving from childhood you always remember. Instead much of the family stress of making a day into some sort of idealized Rockwell disappears. We need only do one thing, and that is to be thankful, and while it should be the simplest thing to do, inevitably…it is not.

I sometimes think that Hallmark and other card companies must be incredibly frustrated with the holiday. They are still, despite their best efforts, unable to turn it into a manufactured reason to make money and increase their capital. There is no fairy or elf that comes along to sprinkle dust on you in the middle of the night and make you thankful for all you have been fortunate enough to receive. An image of such a creature inevitably sets me off laughing as he is somehow unimaginable. One being thankful is one action that no one can force upon you, nor can they magically impose a feeling of gratitude without your effort. Thankfulness is a choice, you choose to be thankful where you are and where you choose to be.

The duty of the holiday or the reason for the holiday is that an individual must be thankful for something, anything, and to someone. It could be that you are thankful to the Flying Spaghetti Monster for creating International Talk Like a Pirate Day; or you could be thankful to your mother because even though you are at the age of 45, she is still willing to clean you room. Be thankful to Buddha for laughing, or Christ for being crucified. What you are thankful for is immaterial. In this way the holiday is not distinctly religious, nor is it distinctly American as some social critics claim. Surely other cultures have much to be thankful for and find their own way to express gratitude to both entities or for such items. If one is unable to decide a single thing to be grateful for, then inevitably the very value of life comes into question.

A few years ago I shared Thanksgiving with a friend who absolutely dreaded the holiday. She insisted that it just seemed like pre-gaming before Christmas and one should simply celebrate the great holidays in December, leaving November to stand on its own. It’s easy to see this holiday as completely pointless; there are no gifts, there is no grand finale, and for the exception of the Macy’s Parade there is no common experience that unites the entire country together. Each family sits down to a dinner that is uniquely their own, be it a stuffed turkey and homemade cranberry sauce or macaroni and cheese. We spend time thanking each other because that is in many ways the most expensive currency we have and yet it is universal and our freedom to choose how those twenty four hours can illustrate our attitude about the things in life we treasure. If we cannot take time on such a day to be thankful, to stop and listen regardless of what goals are unmet and what desires we have that have been lost. What makes us think that we will ever be ready to receive the gifts of Christmas?

As soon as I saw him across the acting studio, something inside my brain said, “Steer clear, this one will break your heart, he is bad news.” The other side of my brain said, “Don’t be so judgmental, he hasn’t even opened his mouth yet. Give him a break.” So I got to know him anyway and we became friends over the course of a month and then a year later I discovered that the original alarm that had gone off inside my head was actually right.

We are told over and over again that one cannot judge a book by its cover but yet every once in a while a definite siren goes off in our heads and we are told very loudly that pre-judging someone is what we should be doing in order to steer clear of a massive problem. Certain signs we don’t consciously, notice and so we cant really justify why this sudden onset and strange feeling appears. Yet our subconscious sees them and the lights inevitably start flashing despite us having no proof. To discount those flashing lights is exactly what we are taught over and over that we are not supposed to do, “Don’t be judgmental, wait and let people show themselves according to their actions. Wait and love everyone regardless of how much your mind is unjustifiably screaming out ‘this is a really bad idea’”

Don’t get me wrong. I am, if anybody, the victim of first judgments. Often I wonder if people are incapable of hiding their first judgments as they speak to me as if my mental capacity was evident simply by observing my physical condition (this in turn gives me plenty of opportunity to judge them as I find that such an introduction is proof enough of action, but that’s beside the point) and we refuse everything only to say in the end, “We should have gone with our guts.”

What is the difference between a gut instinct and prejudice or a pre-judgment. I’m not really sure. Perhaps it’s only when you realize you were right all the time that you dare to call it a gut instinct, and if you are wrong or coming up with bad explanations, the world cries prejudice. Perhaps the difference is how hard one is willing to work against that instinct and how hurt one willing to be because that willful ignorance. Perhaps it is an item that only time will act as the great proof.

But I am learning, or at least trying to learn, to take those subtle voices inside my mind which do not come from a clear source, a little more seriously. Perhaps it’s a vain science experiment on my part to see how much of a soothsayer I can be. But in the end, I want to be able to look back and say “I went with my gut,” even if my gut was horribly horribly wrong. In my experience there is little worse than saying I ignored my gut and thus walked into a situation where my instincts told me I had no business. If I was warned internally that there would be trouble, it doesn’t matter how open or socially correct I was trying to be. There is no one to blame but myself.

After he left I was in a panic. My friend had come over to do some work on the house and in the process of accomplishing various tasks, he let slip the latest news release on how the world is supposedly going to end. Part of me immediately fell into the trap, and then the more logical side woke up when he said “Things will be as terrible as they used to be,” and I thought to myself, the world kept on turning before modern technology. If we lose it now, regardless of the worst case scenario, the world will keep turning still, and somehow everything will be alright. Perhaps I am forced to think with this level head on my shoulders because I know if it was Armageddon, I am doomed. I am considered physically weak and according to evolution and survival of the fittest I shouldn’t have made it this far at all. I have visions of myself succumbing to cannibals when food becomes scarce and I just think, “Really, what can I do?”

Part of this is because I have taken the time in my mind to examine the worth of life, any life, just existing regardless of what we accomplish or what we are physically or mentally capable of doing. To do this, one must determine what he means by the word “worth” or more importantly, what he means by the word “life.” Such big philosophical questions often have more of a practical application when it comes to examining family affairs. The older generations define both with dignity. My fascination with the subject probably began when the matriarch of my mothers side of the family was succumbing to the final gruesome stages of Alzheimer’s after ten years of struggling with the ailment. At that time all of us in the family had to examine what we meant when we said the word “life.” What is a single life worth?

It’s easy to fall into the utilitarian trap of the greatest good for the greatest number of people, but often it is the individual lives that lead to any great good for a great many people. I think Henry Ford and the first assembly line. It is one of history’s greatest ironies thata the live of the man who invented the assembly line points to the fact that no discovery or invention was started by a collective, and they certainly not a collective deemed to be in charge of the world. Yet while they are simply individualized single lives that together if died en masse, would make up a statistic. The world would look incomparable to how it looks now if these people never lived long enough to give the world their greatest creations.

A premature loss of life either by tragedy, brutality, or someone deeming the situation “for the best” is a premature loss of possibility for the world. These possibilities mean options are exactly what we need in crisis situations. People who are willing to look at the world in all of its ugliness and examine what exactly what needs to be done to make it better are the type of people that end massive tragedies.

To the people who seek to solve the problem by saying over and over, the “greatest good for the greatest number of people, I wish to say “at what time?” Einstein wasn’t particularly bright growing up and if he were brought up somewhere else he probably wouldn’t have become the amazing scientist that was living inside him even in his early years. Sometimes the benefit we can give the world must be allowed to safely and securely grow before it becomes apparent. It is for this reason that I question such dangerous practices and panicked forms of thinking which dictate that we live for survival rather than living for life.

I truly believe that there is no such thing as a wasted life. Even the most dependent among us, those that often seem a burden and are unable to attain any goal other than simply existing teach us how wonderful life is and how beautiful we are by just being ourselves comfortably without striving to be more than simply who each of us were made to be. In short, even those of us who are most in need of assistance, unable to perform the most basic tasks, teaches volumes which are so easily forgotten.

The world in general seems to have it’s favored causes. Put on any news station or get any paper and you see the same issues over and over again from environmentalism, the desperate longings for prominent issues such as gay rights, taxes, immigration status to be solved and verified. Favored causes are pushed both by the media and academics into our living rooms and classrooms. In both examples, there is the perfect target audience; someone who is unable to escape the lectures of a reporter or professor either because that individual is in their home or is the recipient of the listeners tuition.

We all know the plight of the panda, the anguish of certain anorexic superstars, the heinous hysteria of healthcare and so forth, and these are admirable causes but what about the issues that we never see. How very few of us know about the dying rooms in countries like China dedicated to the starvation of infant girls, or that the western media often forgets to carry news of South Africans rioting? The situation of orphans being turned out of orphanages at an extremely young age in Russia, or simply the fact that there are still people in America forced to work for next to nothing?

I admit that I am biased, as a woman with a disability my issues seem to never fall into favor with the media. People assume that the London Underground is accessible just because there is a law and discrimination has been “terminated” worldwide. It gets next to no media coverage and, truth be told, most academics are not even aware of these situations, so why should anyone know about certain struggles when there is little done to report of them?

A friend of mine said the other day over a dinner conversation that watching the news now sends him into panic attacks. There are so many issues he is made aware of by the BBC and CNN that there is no other response he can summon up in himself except for panic. I couldn’t help but think and admittedly I added to his panic in stating this; it isn’t the issues that we know about of which we should be concerned, rather the one’s we don’t hear about that are the most dreadful and most sinister. For every missing child the media races after, there are dozens others that are never found and the stories lost. A particularly gruesome murder is only represented as many others go unnoticed. The world is not as horrible as it appears on the news, but in truth, we only receive a fraction of the story.

There are of course and always will be favored causes that seem to get all of the media attention; the grants, the money from the government, and even the justification of admiring friends, and there are some that don’t matter in the world to us regardless of how closely they touch our own hearts. Perhaps these are the issues we should be dedicated to, the ones we feel we are personally invested in regardless of the fact that they are currently the popular and dramatic issues or not. It is precisely because the media does not hold a certain issue as a favored cause that we would do well to make it our own. 

Several years ago I found myself working in the mission fields of Mexico side by side with a nihilist who was acting as my personal assistant. I always enjoy working with nihilist; they tend to keep things in adequate perspective. After all, if you believe in nothing, then even the biggest crisis is no reason to lose one’s head. She was particularly special to me since she agreed to come help us build a drug rehab center and give herself with sweat and construction work by day, assisting me when we got back to the compound to rest, while at the same time proclaiming that she refused to believe in God, Faith, or even Existence. Stopping to rest and drink some Joya one afternoon I examined the local people passing by. Many were poor; many more were in need of something whether it was material or otherwise. I felt the sun on my back as I exclaimed “I feel sorry for them”.

“Why?” She made her question sound more like a statement than an inquisitive response as she undid her shawl which was currently on double duty between covering her legs on the days we were in churches and acting as a cool top on the days we were at work pouring and mixing cement. She never followed the conservative dress code of the organization she was with, and for that single opinionated explanation I respected her.

“They don’t even know what they are missing, it’s like they don’t know that they are poor and I feel bad that they will never rise to have the same advantages that I have.”

“Well they sure as hell won’t with people like you saying that!” I was shocked by her biting anger. This response was atypical of a person who insisted that nothing existed. She got down on one knee and looked me square in the eye, “Don’t ever tell people that they are poor, don’t even think about them having less than you. It’s when we label people as such that we place them in obscurity.”

Her point was fierce but one that I would do well to remember more often. I believe, particularly when working with young people, that when you hold a level of expectation in front of somebody they will do everything possible to rise to that level. Likewise if you out rightly label them as being poor or disadvantaged, disabled or even having “special needs,” they themselves will define their entire existence by such a label thus never having their eyes opened to the fact that someone out there thinks they have potential. The higher the standard presented, the higher a person will rise.

I often think of this proportional reality when I see people of my own age swooping in to fix a problem when they are unaware of the complexities and nuances involved. Many of my peers have insisted on serving human interests in an organization such as the Peace Corp. or attempting to justify it on an more academic level by getting their degrees in anthropology and insisting that they can save the world by their field work. Such an attitude is necessary in the role of a young person’s assistant. It acts as fuel to get us off to a roaring start. But often citing low standards and insisting that a group of people can not have much expected from them does little except to encourage dependency. Lowering standards is often seen as taking pity on a person, but inevitably someone who is pitied will become pitiful.

Perhaps I am more acutely aware of this issue because I myself have experienced so much help in the name of pity; people insisting that I needed more help than I actually did and should not be able to account for much. The thing is, even when a person attempting to give aid doesn’t say out right “I pity you”, you always know. Even their help seems stale or rancid and disingenuous. Their smiles seem deceitful and often well planned. Every act they commit, every item they give you simply reeks of false humility.

The difference between offering someone help out of pity and offering help because you empathize with their humanity is the difference between seeing people as belittling you and seeing people as equals. It is crucial for anyone attempting to perform acts of service to realize that quite easily, the roles could be reversed. The ones giving the service could become the individuals in need and the ones currently in need would have to take it upon themselves to serve. All of our states, our finances, our homes, our security is never fully established. One can jump from a single level of status in society to another within the blink of an eye. Service without pity, so that someday a person might not you’re your service, is to understand the crux of humanity. We all are desperate for others to honestly and willfully provide human aid and that we are never in need of pity.

There was a loud bang as I went through Russell Square. It sounded like a gunshot causing me to slam on the breaks of my wheelchair and look around. Someone ducks; someone else grasps his jacket and attempts to walk along a little swifter. I look down to the ground only to see that my back tire of my wheelchair has exploded and I am now left to limp my way home, dragging my entire left side behind me. It’s funny, whenever something like this happens I feel absolutely positively disabled and deformed. I can literally see (despite my friends telling me otherwise) that people are staring at me thinking, “Poor girl, she can’t even afford to have two fully functioning tires. She might as well try to manipulate through life having square wheels.”

My left side of the body where the tire has blown is not approximately two inches than my right side. Everything is completely off kilter, I feel like the hunchback of Notre Dame, and all I can hear is this annoying thunk thunk thunk as my wheelchair spins over on itself and attempts to fight its way past added friction. A blown out wheelchair wheel means that my entire life has gone askew; my entire life for the rest of the ride home will be extremely inconvenient, uncomfortable, clumsy and slow. Worst of all it’s the inevitable question that immediately starts coming.

“Excuse me miss, I wanted to let you know that you seem to have a very low tire.” Very low? Really? It’s flat. It’s flapping in the wind and I am very aware of it thank you very much; it has lowered my entire center of gravity. “Did I know I had a flat” is like asking if I had five fingers on one hand. Absolutely I see the evidence of it every meter I travel, why are you bothering to state the obvious?

On the bus ride alone, seven people tell me this fact. Perhaps I have actually misjudged the typical Londoner in assuming that he is highly unobservant. They seem to be very observant of the status of my wheelchair wheels, they just don’t seem to think the individual riding on the wheelchair would have any reason to find a flat even more obvious.

I suddenly cannot pass by a male without him commenting that I have a flat tire and offering or better yet, begging me to let them fix it. I politely decline and can’t help but think of the potential pick up lines that I am wasting to play the damsel in distress; the woman by the side of the road flashing her lights because she has a flat tire is simply too easy. Suddenly there is an over abundance of testosterone around me, so much so that it seems like everyone thinks I am too stupid to notice what they see plainly and every male I meet swears up and down that he is handy and could fix it in a flash.

After about three hours, I manage to make my way back into the flat. Flat in this instance being my living accommodation and not my flat tire. I work my chair which now has a quickly drained battery due to the increased friction back into my home and quickly plug it in. A few hours later I hear my roommate arrive, he is one of the few people who I would let touch my wheelchair. He has fixed his share of flat tires, broken lights, replaced about every square inch of the chair so much so that I know the object I am dependant on to get around London is in very good hands; Except I would have hoped that he didn’t utter the next words that flew out of his mouth after he greeted me.

“Hey, were you aware of the fact that you had a flat tire?”