Life Only Works…

Thursday, January 27, 2011

Living with a disability is the equivalent of being trapped inside the riddle about a dog, a duck, and a bag of grain. Which all need to cross the river? You can’t leave the duck alone with the grain because the duck will eat the grain. You can’t leave the dog with the duck because the dog will eat the duck. Yet somehow you have to manage to take a rowboat and get all three across.

It was on a day when my life was turning out to be the epitome of this riddle when my mother exploded at me “You need to learn to avoid problems at all possible costs! Why can’t you keep things as simple as humanly possible?” The irony of it was I actually do my best to accomplish just that, but I am somehow extremely unsuccessful at it. When you are trying to navigate through a world which is built for people on two functioning legs and with two functioning hands, the idea of avoiding problems leads you little further than coming out your front door. If you want to avoid the challenges of the world, that is staying inside where it’s safe. If you want to live life to the fullest, you better be prepared for some sort of “choose your own adventure” story with lots of opportunities to see the “Game Over” screen.

I used to think that life was actually about avoiding problems at all possible costs, making the right decisions that would lead to the path of least resistance and easy sailing. But you can’t avoid problems. There is no fairy godmother that can swoop in and make everything OK. Living was only in the confines of a highly accessible house and being certain that all the problems in the world will not come to get you will lead to a highly boring life. It’s the old dilemma of Siddartha, the Buddhist prince who had everything he wanted and yet lacked fulfillment in the world. I’m not sure when my mother said I needed to avoid problems, she meant it to its fullest extent possible. Because avoiding problems means on some level that there are real solutions to every dilemma we face, which can be attained. Some issues are so complicated that they are, on a certain level, unsolvable. The best thing we can do is simply work our way through them.

Life only works when its constantly expanding in every direction. This doesn’t simply mean finding creative solutions to the problems that we encounter, or incorporating some sort of community spirit through living. t means that the problems, the sorrows, the bruises, these too are a part of life and worth working through and worth living for. Even this sorrow, which none of us want to encounter, must be faced fully in order for a life to even begin to have the depth possible and necessary to be rich and full of vibrancy. In return, these problems we encounter and sorrows we must mourn present us with a new challenge. We can either close our hearts and become callous, refusing to go anywhere that hasn’t been protected by some emotional health and safety policy. Or we can take it, all of us that is, for what it ,d recognize that to love it all and to live it all is to put yourself out there and be vulnerable, risking failure heartbreak and the entire boat tipping over losing the entire dock and the bag of grain. But in the end, we live in a world where trading vulnerability and safety inevitably stops not only problems, but living, dead in it’s tracks.

Reading the Map

Thursday, January 20, 2011

When I woke up in the North Carolina humidity, the only thing more confused than my brain was, of course, my body. The cool shadows of the afternoon did nothing to stop the fact that I was sticking to the sheets, or that I was suffering from severe jet lag as I had just flown back to the States for a week to visit friends. It was two in the morning for me and my friend had just shaken me awake and murmured something about dinner. I placed my unsteady feet on the floor and made my way into the next room in hopes of getting my bearings a bit better. There, on the wall, was a map of the world and my eye flicked straight to where I had just come from: London, UK.

In that second I knew something in my life had changed.

Ever since I could remember, whenever I saw a map my mind would automatically look for Chicago, Illinois. This was where I spent the first twenty some odd years of my life calling ‘home.’ This could very well be attributed to the fact that Chicago has Lake Michigan acting as a large blue finger pointing to it for the rest of the world to notice. When I had completed college, spending all four years in the state of North Carolina, my eye would still jump to Chicago every time I looked at a map. I simply assumed, like so many other habits acquired in childhood, seeing Chicago first would be something I always did.

I stared at my friend’s map for quite some time attempting to almost drag my focus back to where it normally settles. Focusing my gaze there just felt uncomfortable and like a magnet I kept being drug across the ocean back to London. I went to help my friends cook dinner.

“Hey, when you guys look at a map, where is the first place you look?”

“Russia,” one friend said without thinking.

“Chechnya” blurted out another.

“Medellin, Colombia,” spilled from a third.

All of these places, random as they seem on paper, were not just places they had been to. Over the past seven years I had known them to go everywhere for months at a time as all three of them were desirous to pursue human aide as their professions. Rather, the specific places they mentioned were the areas they determined as where they wanted to serve for the rest of their lives. Here was where they had written me letters saying that they had fallen in love with the people who occupied the area. Here were the places that, when mentioned on the news, caused their hearts to skip a beat and then cry out in anguish. The places they named without stopping for a moment to think, were where they hoped to raise their families, live their lives, and invest in their professions…because they already knew that place would be home.

It was then it dawned on me for the first time, that England had somehow become my home.

I went back to the cool dark room which held the map after supper to rummage through my bags and find some toiletries. My eyes kept floating back up and finding the outline of England. I tried to think of possible explanations for this phenomenon but could find none. I hadn’t spent the last years looking at maps trying to figure out where I was as I did growing up. Outside of coming to America, I couldn’t remember the last time I had seen a world map. I had spent the same amount of time away at university as I had in the UK and my eyes never searched for North Carolina. There was no habit I could think of to justify the new reflex.

By weeks end I was still searching out England before anything else. My best friend took me to the airport and although I was sorry to leave her, I couldn’t help but talk about the plans I had for the upcoming weekend in London. I didn’t want to stay with her, I wanted my friend to come with me. The flight attendant came to help me board the plane as I gave my friend a last hug. Although I looked back after being taken from her, I smiled, thinking about all the people and wonderful things that were waiting for me when I got off the plane. These details were what made the little island mine.

“Are you heading home now,” the flight attendant asked me while supporting my arm and helping me walk to my seat.

“Yes,” I said. “Yes, I am.”

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What I Want is a Proper Cup of Coffee

Tuesday, January 18, 2011

The problem with human rights is that people don’t realize how important those rights are until their own have been violated. I was trying to get on a train with Paige the other day up in Scotland, and she sat down a full cup of coffee and a full cup of hot chocolate so that she might get a ramp for me. Then, a moment later, I saw a cleaner start to get on the train and, realizing what was about to happen, I grabbed him and said,

“There are two cups of hot coffee on the train. They are mine. I’m waiting for a ramp. Please do not throw them away.”

“Right,” he said, looking at me blankly and extremely confused.

The next thing I knew, the coffee cups were gone. I was livid. First of all, no one comes between me and my coffee, particularly at 8:30 on a Scottish morning when the weather is miserable. Doing so is the equivalent of putting one’s hand in a piranha tank. It is truly, in a matter of speaking, taking your life into your own hands. When he got off the train, I confronted him.

“Why did you throw away our coffee when I specifically told you not to?”

“You want to get a on you say?” he asked me, avoiding eye contact. I could see this was going nowhere, and so I grabbed a hold of his arm and repeated the question. Within another moment, Paige arrived.

“What’s wrong?” she said, ignoring the man complaining about my grip.

“He threw away our coffee when I specifically told him not to.”

Within the next fraction of a second, Paige was asking the janitor questions and making him feel extremely uncomfortable, I’m sure.

In times like these, I can’t help but wonder whether or not we are too hard on people. I mean, really. It was his job to clean up the train, and people at the lowest part of the ladder usually have the most miserable jobs and are more than a bit snippy to let everyone else know that they are unhappy. People don’t think, as a mentor of mine once reminded me. It’s not that they’re malicious so much as they don’t realize the ramifications that their actions have on their fellow human beings. For example, if he thought about it, the member of staff would probably question, ‘why am I throwing away two completely full coffee cups? Maybe they are meant to be here.’

To make matters worse, in addition to people not thinking, they also don’t want to have to claim responsibility for things that are likely to go wrong. Most people don’t want to get in trouble, and the man who threw away our coffee realized that if he left rubbish from the previous train journey on the train, he would not be doing his job, and it would be more likely that someone would complain. Simple enough, and for that he is commended. Not many people I know would be willing to do this job of cleaning a train so thoroughly.

But the fact is, I did specifically told him not to clear away our coffee cups, and the fact is, he looked at me blankly, did not bother to clarify what I had said when it was unclear, and ignored my request. In these points, I don’t think my assistant nor I were too harsh in challenging him and his actions.

I said very little on the train ride back to Glasgow. I was frustrated as one can imagine. Who ever thought that two cups of coffee could cause so much frustration and disappointment? I have long since stopped being frustrated with the member of the cleaning staff. After all, he was just doing his job. But I started being enraged with the bigger problem that at the moment seems unfixable. Why is it that we even needed a ramp to get onto the train? Why couldn’t some brilliant engineer just make the train platform level with the train? Why wasn’t there an appointed train car, at the very least, that didn’t require a ramp to get on and off? Why was this world built for able-bodied people when able-bodied people ultimately have their perfectly able-bodies commit treason against them with age, aches, and illness? Who was the idiot who came up with the notion of stairs anyway? Probably some ancient Roman governor who wanted to make sure that his mother couldn’t bother him in his room.

I lost my appetite for a while and stewed in my own little microcosm of social change. Before reaching Glasgow to go home, it was a miserable evening outside. The rain was still coming down at that annoying rate of not being hard enough to stop you from your responsibilities but being a bit too hard so that you would inevitably get soaked if you were out more than seven minutes. I stopped by a coffee kiosk with Paige, and we ordered another two hot coffees to go. And this time, we were prepared to guard them with our lives. I was still in my own little world, making my way back to my Glasgow flat in the cold rain.

As a disabled woman, very often I am considered to be invisible, even by the most liberally minded people, and inevitably I have to ask why. Sometimes the system doesn’t work, and you have to ask why it didn’t. Sometimes the classes you need to go to are in a building that is completely inaccessible. Even to the most able-bodied of people it presents a challenge, and then you ask, ‘Whose brilliant idea was this?’

But whatever you do, and whoever she is, do not come in between a young professional woman and her coffee.

A Forced “Us” and “Them”

Thursday, January 13, 2011

Being single and someone who professes a Christian faith is indeed very strange, particularly if you’re willing to open the doors of your life to let in so called “church people” and all of the aggravations that they bring about. For a majority of such people, they assume that when two individuals of the opposite sex get together all they wanna’ do is jump one another like rabbits. Over and over I’ve been given lectures on keeping the door open when there’s a man in my home, not pursuing the company of boys when its late at night. All of which I have found exceptionally demeaning as well as harmful, for one thing, friendships between the sexes become extremely limited.

This is especially true if a woman who follows Christ seeks to be friends with a male who is not a Christian. Church people too often quote the famous passage, “What does the righteous have to do with the wicked?” Swearing up and down that such friendships, no matter how innocent they may seem to me can only lead to trouble. But, in all of this well intentioned advice given by ministers, lay people, friends who accompany me to church, and even some people that stick their nose into my business without invitation, I can’t help but ask…What do you do when a person who swears there is no God, proves themselves (perhaps over the course of years) to be more faithful and Christ-like than the boys at church. Ideally, of course, as they answer, the conditions shouldn’t be this way. Men who follow God should be the best of the best because they are following the best. Ideally the church would take care of its own, but most of us, myself included, stop looking for ideals when we realize that we don’t operate in an ideal world.

Since moving to London I’ve had declared communists take me to black tie dinners, an atheist adapt my bathroom to suit my needs, agnostics build me ramps and cook me meals and my tires pumped and rotated by men who swear up and down that God is dead. I even went through a phase where my laundry was done by a nihilist (fortunately he believed in clean clothes if nothing else). I have yet to run into Christians who dedicate themselves to making sure that I am happy and things in my home are running adequately as these men have. In fact it is hard to remember ever seeing a man from the church, who swears up and down to be a Christian showing any level of commitment and protectiveness as that I’ve seen from those outside of the church over the past few years.

It may perhaps do the church some good to realize that God’s family is as dysfunctional as the rest of the world. People who disagree are either in denial to themselves or flat out deceitful. Religious organizations teach that there are two kinds of people… The good (those that believe in God), and the bad (those that don’t). I can name at least ten women, now older, who thought that they were marrying the ideal Christian since their fiance was accepted to seminary and who wanted to be a pastor or a Christian counselor only to discover that the man they married was limp-wristed and did little except depend on the stability of their soon to be wife. Even though all faiths and views choose to fence themselves in with false perceptions saying, “If we are with likeminded people, everything will be much easier.” The truth is, we are no better than anyone else because of who we are, but because somebody bothered to love us when we were unlovable.

I have a difficult time encouraging the young women I mentor, or anyone else for that matter, to pursue any form of exclusive relationship. This is especially true when I am treated so well by people who the church teaches should be considered “them” and not “us.” It is these people who routinely show me a bigger God than any man who resides within the four walls of a religious establishment has yet to do. The relationship with such friends remind me that if the creator that I believe in is all powerful, he should be able to show His glory through all people. Not just those that we deem as “tolerable.”

One of the earlier Sunday school lessons I remember ever being taught, was the story of the good Samaritan. The point of the story is not that this man stopped to help someone who was suffering on the side of the road when two other people refused to do so. The point of the story is actually that this man was not a man of faith and was not obligated by his religion to do so. Above all else, God loves to scandalize and to teach us that our ways and the boxes that we think the world ought to operate within, don’t fit within His view of the world. Thus, even the person who is the most atheistic in his focus can prove to be an invaluable friend. A great person, and an unexpected hand in meeting our needs when those whose should rise to the occasion, refuse to do so.

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Losing Pillars of Strength

Tuesday, January 11, 2011

For someone who’s entire life seems to be based on the focus of going beyond the accepted borders to strive for excellence. It is easy not to put trust in the negativity that those around you expel. A Chinese proverb says, “Those who say it cannot be done should not interrupt the person doing it,” and if there are certain individuals who you know will be naysayers to your cause, your best bet is to avoid them at all possible cost. Unless of course, they were once positive about your ambitions and insisted on offering you encouragement during the difficult days. Last summer, I ran into such a teacher who for years before insisted that I would go far in life. She gave me every possible encouragement that she could muster and four years ago I was incredibly grateful. Starting out on my own and attempting to get my bearings as well as get directions. This summer however, she offered no such encouragement. Instead I found her cold, harsh, negative. Her own life had been degraded in recent years and she found it necessary to do the same for anyone else she came across, including me. Where there was once warm support and encouragement, there was now fatalism.

After class one evening I found myself hiding in a brick garage off of Tottenham Court Road, the hot tears running down my face and spilling over my eyes almost uncontrollably. Among other things I could think of to do, I finally rang up a friend of mine who was sitting at home watching television and told her of the confrontation. “She told me I would be better off living in a home.”

“What! In what context?!” I explained the situation saying that the altercation finally ended with her stating that the best bet for me would be to only work for the disabled population for the rest of my life.

“Is it true?” I asked, fearing the response.

“Of course not, don’t be stupid.”

I once asked my pastor when a person can tell the difference between perseverance and plain stubbornness. He explained that in the first, your closest friends and loved ones will encourage you. In the second, when those that know you best begin to question your motives and actions you know its time to take a step backward and reevaluate the aim of your self journey. I always took this advice as wise and solid but then that night, huddled on Tottenham Court Road, I realized something else. Sometimes, in the course of your journey, the people that you assumed were closest to you actually stopped traveling by your side a few miles back and they are no longer your top advisors or safe places in which to store confidence. They are in fact, no longer with you.

Sometimes the goals of a person don’t need to change, the entire system needs to be reevaluated.

It’s always shocking when someone you thought was constantly going to be supportive and there for you says, “Thus far will I travel with you on the road, but no further.” Either they no longer have the energy to encourage you or they disagree with your choice of destinations, perhaps they have come into their own crises in life which are causing them to reevaluate everything. Regardless of the reasoning, of course at first all you feel is abject betrayal, the idea that this individual was going to be a pillar of strength for your cause and now has backed out. Then, you have a choice…stay with the person as they have stopped traveling down your path in the hopes that eventually they will begin moving again. Or, leave them there and keep going, not waiting for the fallen pillar of strength to reassemble. Here you find the test between the value of the relationship and the value of chasing your dreams. Sometimes one more costly than the other, and often times you cannot have both.

A relationship does not necessarily have to end when such a person decides they can no longer support you. But, I have made the conscious decision to end a few as I did with my teacher on Tottenham Court Road that evening. I can’t speak to her reasons for insisting that I change the course of my life. I’m sure in her mind they were the humane ideas to express. But I know, that I can no longer depend on support from her. Often times we are unable to stay where we lose our friends and we find that the dream drives us forward even when they insist that they will not come with us. Sometimes such people do get moving again and we welcome them back, but often times the split is permanent. That evening I knew that such a split had occurred, one in which the divide would be permanent. And all I could do was come out of the garage, fling it over my shoulder, and head further down the road by myself. Hoping that somehow, my old teacher and I would cross paths again.

On Suffering Well

Thursday, January 06, 2011

I particularly worry about my generation when it comes to reflections on suffering and doing so with grace and dignity. We are quick to prescribe drugs and change our general health regimens in order to avoid suffering. Why shouldn’t we, if it can be avoided, what’s the point in prolonging it when such pain can be stopped. But it seems as if my generation has a Victorian-like opposition to admitting that the world will always be less than ideal, that our bodies break down and eventually we all have to shuffle off this mortal coil. Indeed, the last great taboo is something we all face in the privacy of our own bedrooms, at our weakest moments. Perhaps, in living our lives, whether in denial or admission to the inevitable, we do find for ourselves exactly how our lives will end.

“There used to be books written on how to die well,” I heard the man on my internet radio broadcast recite over and over. I thought back through an exercise I spent my time doing in drama school for several months in which our movement teacher would ask us to walk around the room assuming a historical persona and then at certain points giving us additional information about that historical setting. Over and over regardless of the precise point in time, we heard that every family was much more effected by death than we are today. At some points, 30% of all women dying in childbirth and little to no security or regulatory systems imposed on corporations, government or personal safety standards, death was always one slip away.

Today death, illness and weakness seem to be the last society taboo. I can walk into a room and say to my girlfriends, let me tell you about my ex-boyfriend and the intimate details of our relationship and nobody raises and eye. If I take the same group of people and say “I want to tell you about how my grandmother died,” the entire room falls silent. We don’t know about suffering and death the way our predecessors did. Most of us can go our entire lives without seeing a dead body and those that we do see at an open casket funeral are made up to look more like figurines than the cold truth of the decomposition of the human body. We are strangers to suffering, assuming that those in need would be better off if the experts took care of them and also assuming that we have little to offer ourselves.

The idea today of a book being written on how to die well seems absurd. One may only walk through their local Barnes & Noble to see that the self help book aisle preach the opposite effect. Guaranteeing love, energy and longevity that will last far beyond what our grandparents dreamed of. In this world, even with all the medical advances that have occurred in the past one hundred years, dying is still guaranteed. But that doesn’t mean any of us bother to know how to be good at it.

Christians especially used to be known as individuals who knew how to suffer and die well. Its true that nobody wants to suffer. But we assume that somehow something has been taken from us, stolen even, if we do so. Its not fair. Certain people can go their entire life without getting a tumor. Why did one take my friend in her mid-30s? We say to ourselves that we don’t deserve suffering and it seems the more faithful we are, the more adamantly we insist that we are good people that have absolutely no reason to suffer. The problem is, the best of us who walked on this earth thousands of years ago, never said there would be no suffering. They just insisted that paradise would come not now, but later.

After my own suffering, even in my youth (and I’m sure it will go on until I die) I have discovered that I am no stoic. I cannot throw back my hands when I’m in pain and say “That’s the way the world is, I may as well succumb to it.” We as human beings combat suffering because the world should not be suffering, because we realize that the world is not perfect. We do have an idea of what the perfect world would be. One that has no life long illnesses, aches, frustrations or injustices. It is because this world has so many blemishes that we can imagine what life would be like without them rather than being naive to such imperfections in the first place. Those who care to admit that suffering is universal and inevitable in life, do so at a benefit to themselves. The human condition is vulnerability. There is no exception to this rule.

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Aware of the Rest

Monday, January 03, 2011

I believe firmly in the power of the individual. That’s not a particularly popular statement to say these days. We are told over and over by our world that it is best if we don’t think of the self, but rather what we can do to help the world as a whole and focus on others rather than just ourselves. While this altruistic theory is admirable it forgets one key thing…often it takes the individual in all of his uniqueness in refusing to settle for the status quo that can ultimately improve circumstances for everyone.

A friend once told me, “It is the person who is aware that he has more advantages than those around him who can use those same advantages to change the world for the people who lack them.” I believe what he meant was, that one cannot be afraid to hide one’s talents and to stand out in a crowd by doing the best that one absolutely can when some of those around him are unable to perform at the same level. Furthermore what he meant was, a social leader (someone who is truly capable of bettering the world and changing conditions for everyone) must carefully balance along a philosophical tightrope. One hand hovering over self understanding and the other reaching for how he can use his best qualities to aid the situation he finds himself in. In short, perhaps the industrialists of the 20th century weren’t so far off when they insisted loudly over and over again that the cream that rises to the top sweetens all of the milk.

To put it another way, using a biblical reference which was made famous by comic book character Uncle Ben in Spiderman: “To him whom much is given, much is expected.” It is the responsibility of the exceptionally gifted to realize where they could be and in actuality where they are, understanding the schism is how change starts. Often it takes the best educated, the most cunning, and those with the greatest skill in writing and rhetoric to attack issues of injustice. If anyone, regardless of their level of education or skill was able to attack these sentiments, it is doubtful that there would be issues of inequality in the first place. Often it is the financially blessed who have the time and energy to pull themselves full steam into social causes that would otherwise be ignored, understaffed or mishandled if left up to those who have to carry full time jobs and maintain a steady income.

In writing this I cannot help but look around and examine my own living conditions, realizing that I am indeed exceptionally blessed regardless of my struggles and even though most individuals who meet me are faced at one time or another with grappling with all that I cannot do rather than all of my positive and viable assets. While most people in my life see me as struggling, I cannot help but swallow hard when I see another disabled person in the street. Who is alone, and not provided for as I am. It forces me to realize that my struggles are like most of us, exceptionally small in comparison and an understanding that I am indeed one of the fortunate ones. One who is able to express herself and stand up in one form or another for what she believes in and who is able to take rests in between the periods when great perseverance is required. I admit that there is so much work that is yet to be done, and that those tasks include my own sacrifices as well as those of the greater collective.

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