Never Walked In High Heels

Recently it was my birthday and I started to think about what it was I wanted out of life during my tenth birthday. I don’t know why, but being a ten year old always seemed to be a special time for me, like it was the prime of childhood. All the books I read and movies I watched growing up, with characters I admired always seemed to be ten year old girls finding secret places that were especially their own. I looked back to a diary I kept during those days to see what exactly I wanted. See, I believe that each of us are built with desires and dreams imprinted on our hearts. These are the goals we are meant to reach for. These are the goals made for no one else but us. When we are young and unaware of the challenges set before us. This is when we are most aware of what it is we were meant to accomplish. As we get older, and things change, then racing for our dreams becomes less simple and we substitute what we were meant to do for what the world expects us to do.

A while back I lost a friend who informed under no uncertain terms that my aims in life were “unrealistic” and “It’s time for you to grow up anyway.” And it’s true, any dream you have as a young woman with a disability today is still highly unrealistic. There is no job field I can enter at this point with no typing skills and manual labor being next to impossible, where my lifetime career would be simple, straightforward, and predictable. Add to the fact that I work in the arts and the entertainment industry, which, according to him, is one of the most shallow industries in existence and you have a road map for someone trying to reach the moon without a rocket ship. He didn’t know it at the time I don’t think, but what my friend was asking me to do was to deny my dreams simply because the world wasn’t ready for them. Is unpreparedness ever a good reason to move on, particularly when it’s unpreparedness not on your behalf but on the behalf of the rest of the world? Would it be appropriate for an African-American fifty years ago to say that wanting to get a graduate school education at an institution like Vanderbilt was not a worthwhile dream simply because the school was located in an area that was still full of racial tension? Are we morally obligated to change our ambitions just because they might be difficult to reach or impossible given the current state of our society?

I can appreciate if someone has a child that is dependent on them or other obligations the strategy changes. Certain sacrifices must be made, particularly when it comes to earning a supporting those who are reliant on you.. But those of us who are able to get by and still repeatedly try to break down the walls we choose to leave standing might not necessarily have the sociological standard course of action. After all, if no one breaks down the walls that are obstacles in our own culture, they will never come down on their own accord. Rather, they will stay as imposing obstacles waiting for someone in the next generation to tear them down. And so, walls are made until someone is determined to make a ruckus and carry through with the demolition process fully.

Dreams are by nature just out of reach, and if they were easy to grasp and lasso down to the floor, would they be worthwhile dreams or just perpetuating the status quo. It is never acceptable to pass on your dreams simply because they are too difficult to accomplish. Difficulty is never a strong enough reason to quit anything.

There was a time when I was very very small, and I did not realize the limitations plastered on the wall. What I did realize was what my dreams were. At about the same age, I would go to sleep and not understand that the things I did after I went to bed and the images that came across my mind were not reality. The next morning I would ask my mom if she remembered flying over the moon with me or dancing with flowers on fairy dust patches. She would look at me and say “That didn’t happen, you dreamed it. It was a dream.” But it all felt so real to me, even after I woke up safely in my bed.

It’s the most vivid dreams, which no one else can see, that inevitably forces you to reach further than anyone without that dream would ever recommend.

“Charity is no part of the legislative duty of the government.” –James Madison

The 188 pulls up to my stop and lowers its ramp. The nervousness in my stomach disappears for the time being and I am momentarily at ease. In my experience there is about a fifteen percent failure rate of bus ramps not opening up. Now I just have to worry about the bus ramp opening up when I want to get off.

“It sure was nice of them to put those ramps on buses so you can use them wasn’t it,” a little old Irish lady says to me. Nice? No, actually, it isn’t nice. It is the law. When people with disabilities chained themselves to buses as a form of protest, it took years for the lawmakers to take action. It wasn’t until five years ago that all buses were required to have ramp access before leaving the depot. And even with that rule in effect, I still can’t get on a bus a large percent of the time. Call the accessible transit situation in London frustrating, hellish, difficult, or even unfair if you’d like. But you cannot call it “nice.”

I’m always a bit bewildered by people on either side of the Atlantic who insist that disability legislation is something nice for lawmakers to come up with. I’m with Madison on this one, it is not the role of the government to be charitable or nice. Establishing justice and securing the blessings of liberty and well as promoting the fact that all men are created equal is not merely something “nice” to do. One is baffled why the subject of disability rights is seen as an as issues hand-outs rather than justice.

President Eisenhower ordered the 101st Airborne Division of the United States Army to Little Rock High School to escort nine African American children into having the same education as their white peers. We do not look back on that event and say that Eisenhower was being “nice.” We do not give women the right to vote because it is a matter of social grace. Nor should we promote equal access to public transportation because it can act as a form of alms. Perhaps it is a statement about our society’s views of individuals with physical limitations that we choose to see such issues of inaccessibility as a form of inconvenience rather than social injustice.

The bus stops in Russell Square when myself and the woman alight. I again feel a sense of relief once I reach the pavement and turn to get to my appointment, smiling at the woman out of trained politeness. Looking behind me I see her walking away slowly, dependent on her wooden cane. I can’t help but wonder, as her body becomes increasingly uncooperative with age, if notices that her world is shrinking as well. Perhaps she doesn’t even realize that growing older and loosing stamina shouldn’t result in a smaller world.

From the moment I laid eyes on him I was stuck by how much the illness had ravaged his body. I had grown up in a place where I had seen my share of AIDS victims, or so I thought. But the ones I had seen, leaning their partner’s arm at an evening benefit for the local charity, was nothing compared to how ill he was. As he sat up in bed I wondered where the rest of him was. Then I realized his legs were still under the blanket. They were just so small that it looked as if nothing was there.

I don’t remember his name at all, which is funny because I swore to myself that I would always remember sitting on his bed. During my time at university, I volunteered to visit individuals who were struggling with the final stages of AIDS. South of the Mason Dixon line, this meant many of those we visited had been abandoned by their families. This is not to say that none of these people had loved ones who regularly visited the ward, but many did not. Given my age, my mother had to explain to me later just how terrifying the HIV epidemic was and the stigma which still remained.

“Don’t you know I’m… gay?” the last word wasn’t even whispered- it was mouthed. I nodded and kept asking him questions about the horses he used to train before he became ill. No matter how sick people are, it’s always stories which provide the most targeted anesthetic. In this case he was telling me about himself, what he did and who he used to be. He didn’t spend his whole life in this bed being nearly invisible, he was someone. And then he went and did something very strange.

“Your shoe is untied.”

“Wha-… oh yeah. I can’t tie my own shoes. Fortunately I don’t really walk much so-“

“Will you let me tie it for you?”

To say I was taken aback would be putting it to moderately. I was shocked. Can you get your shoes tied by a dying man? Was there precedent for this? I hesitated, not wanting him to lose any more of his precious energy.

“Please. I’m a very good shoe tying kind of guy.” I nodded and moved my foot to where he could reach my shoe, his transparent fingers working the magic it takes to tie a shoe, the motions of which I still cannot comprehend. He did it deftly, as every adult I know does. In a flash, he was finished a simple double knot remained which was tied with such determination that it would take my friend seven minutes to undo that evening.

I am here. Even though I am ill, I lived. I am somebody.

Six years later and I still think of him almost every time someone ties my shoes. Within a month he had left his body and someone else had taken his place in his bed. Long after his name was gone from my mind the stories of who he was and the actions of what he did that winter night stay with me. He was a man who desired, like all of us really, to be known and loved rather than to be immortal. Even in our weakest moments we want to touch, interact , and even to serve in order to confirm that our existence will be snuffed out long after the breath has left the body.

In his case, I think that for the rest my life, his existence will keep burning.

Recently, my friends in the UK have been inundating me with horror stories about health care workers taking anything but a patient’s best interest in mind. Yes, I realize that malpractice occurs in America too, and no, this isn’t another health care reform article. My conversations relating the experiences of my mainly able-bodied friends began to make me think about how we, as a society, treat not simply ”the disabled,” but simply the sick, the injured, and the aged as well. Its something even the “experts” can’t seem to get right.

If the mark of how advanced a civilization is how much we have evolved away from barbarism, then surely one definitive measurement of this progress is how we treat the most vulnerable in our society. This, of course includes not only the smallest and the most impoverished but also those whose bodies have turned against them due to either time or condition. And yet, even in our modern age, this level of civility is a standard that has yet to be reached in all but the most exceptional of cases.

This breach of advancement becomes even more despicable when one considers that a breakdown of the human body, in one form or another, is inevitable in all of us. By ignoring or disgracing those whom this breakdown has already occurred in,

what exactly are we trying to accomplish? Perhaps it is that we are afraid to acknowledge that human frailty is everyone’s fate, and the feebleness, the pain, which we see in the eyes of the man lying in front of us from his bed will someday be our own. When we are all faced with our own vulnerabilities, it is within our prideful nature to behave in the worst way possible, particularly when it is embodied not within ourselves but someone else. And so, we go on creating a world which will surly be unprepared for even our weakest days.

For decades, we have made health and caring for those in need of physical help an issue of politics rather than an issue of humanity. Even if we did have universal healthcare throughout the solar system, it does little to care for people in imperfect health outside of an institution. In this way, would the world outside of hospitals and urgent care center be fairer, or would it simply be cheaper to institutionalize the frail who inconvenience us to be dogmatically watched after? If we mean to fix all our health related issues with improving our respect for the frailty of the human condition, both the politicians and the doctors have fooled us into we our much more evolved simply by keeping our weaknesses out of sight.

Of course the words ‘integration’ and ‘rehabilitation’ are words that we hear those dressed up as reformers on the news shows spout out as well, but there are little visible effects of an attempt to improve the quality of life for individuals who don’t have the most cooperative body. Even the most compassionate health care which costs nothing cannot alter the fact that even today, even in the richest and arguably the most advanced and compassionate nations in the world, some schools still refuse to open their doors to disabled children and architects choose to put steps rather than ramps outside of new buildings because the former “looks more traditional.” This says nothing about the countless small issues of discrimination and even hatefulness that occur at the checkout lines or railway platforms.

If we consider ourselves an advanced society we are grossly mistaken. If we think any sort of government act will force us into being more progressive or charitable, we are lying to each other. Those are the changes to a culture which cannot take place by asking doctors to see more people or even handing complicated issues over to experts so we can keep our hands clean. We do a terrible job taking care of people who we find inconvenient in life specifically because we have built a world where their life is inconvenient. But all to often, by the time we realize how inconvenient the human condition actually is, is the time we’ve succumbed to it ourselves.

It’s the simple things in life that you usually don’t bother to understand. This is particularly true if you’re have a physical disability from very early life. You watch your father cook maybe once, it being difficult to see the countertop from a seated position, and after that you hear words like boil, sauté, fry and they literally mean nothing. Everything is simply something that Dad does standing in front of a stove. The idea of me, heat, metal, and sharp objects strike most people as a very bad combination. So when someone is always going to fry your eggs for you, you never learn what exactly frying an egg means.

Three weeks ago, when I committed myself to learning how to crack an egg, I couldn’t even think of holding one. The logic in my head went something like this: eggs are wrapped in special containers at the store, despite this, they still often break before one gets them home, the empty eggshells I see are brittle and paper thin. Ergo: eggs are extremely fragile and given my hand’s amazing ability to crush things I have no business holding them. When my friend asked me to hold an egg for the sake of warming it up from the fridge, my hands shot to behind my back and I took a step away.

I’m not sure why I even was so determined to learn how to crack an egg except that’s it’s the most difficult thing that I could think of to do. Holding one for the first time was shocking: its weight was something which was unexpectedly assaulting to my system. I thought they would be like air to hold, a brittle shell which would require just the pads of the fingertips to touch. In my twenty five year old brain, an egg felt like paper Mache, having never touched one for myself. What I found was a slippery stone that was so unexpectedly smooth that it took all five of my fingers to hold onto it.

“You’re going to have to whack the thing harder than that if you ever want to crack it,” my friend stated as I gingerly knocked it against the bowl. I was afraid the shell would end up in the bowl. Which it did. And the entire contents of the egg ended up in my lap. The worst outcome possible of attempting to crack an egg had come to reality. And the world did not end. So we move on, grabbing another egg out of the pack. (I had bought one of those super cheap value packs with fifteen low quality eggs for under a pound. I figured if I ever showed a real talent for consistently cracking eggs successfully, then I might be able to move on to organic grade free range eggs.)

The thing is about eggs, they are built in such a way that seems like they are meant to be cracked. Between the support of the yolk to the membrane which keeps the shell together after it’s cracked, man has yet to engineer any better form of packaging. But I never knew that because I had never come near holding one. The fact of my inexperience was interpreted as I could not crack an egg when, in actuality, I simply didn’t know how. To complicate the situation I technically could tell someone exactly how to crack an egg. I knew how to complete the task in theory but because I knew nothing about an egg itself, I was petrified of doing it at all. My own condition didn’t directly stop me from accomplishing a task, it was simply a lack of occurrence.

In a way, that lack of experience is them most disabling thing about being disabled. When three different therapists are watching you at age seven attempt to pour juice into a cup, there isn’t much room for the spills that come whenever you are gaining experience. And when Mom has always poured your juice for you, how can you even remotely begin to know what fine motor skills it really takes to hold a jug. There’s so much of the world you don’t even know how to begin to experience unless you can sit there and honestly be given a chance for a raw egg to fall into your lap. It’s not that you don’t know unless you try, it’s that you don’t know until you’re given the opportunity to really make a mess in order to figure out how things work.

Six days later, my friend and I made a fifteen egg omelet for a dinner party. It was made of free range eggs.

I’ve seen the commercials. The male announcer almost teases you with the idea that all your problems will be solved if you only buy the correct application for under a dollar. And from the stance of creative businesswoman, the App Store for the iphone is enthralling. With no overhead, a constantly changing storefront and boundless creativity, this is, without a doubt, the correct formula for the next stage of entrepreneurship for the new frontier.

If only that ‘boundless creativity’ would come in the form of faster evolution.

After all, what exactly is the use of a program which is an alarm clock on a device where one is automatically build in. Better yet, how about coming to and end of a fine dinner and being unable to calculate the tip without the help of your trusty technological companion. Or there’s always the program, that tells you about what other programs have come out and which other programs you need. (This one, much to my surprise, was not created by Apple.)

I bought an iphone in hopes to make my life as a disabled woman easier. With life in this position one is dependent on barons of industry, invention, and software to make life not simply more convenient but also simply livable. To say that my iphone has changed my life would be an understatement. But I was also one of the first people investing in voice activation all the way back in 1994, and have since thrown money at nearly every piece of assistive technology conceivable. In the case of adaptive tech hardware and software, it really doesn’t matter what sort of resources you have, if can’t be sold to the mainstream population the software will not advance.

This is how we get over 200 software developers which create alarm clocks, and no program that will actually call a London black cab. After all, my friends argue, its easy to hail a cab off the street. But figuring out what fifteen percent of your dinner bill is… that’s a real challenge.

The App Store illustrates to me that the leaders of industry are few and far between while those who have the programming skills but lack the imagination are well in abundance. It’s proof that just because there are lots of hands which can make the industry move forward, without the brains there is little guarantee of it doing so. Looking at what sells today will only show you what you should’ve been selling yesterday. And so to hop on the ‘alarm clock bandwagon’ only serves to tell you where the industry is. As with any other form of progress the market has to look to the needs of people who are not in the mainstream to figure out what comes next.

I never really realized how heavy an egg was until last week. As I put it to my friend yesterday when we were meeting for lunch, “I’ve always had people to crack eggs for me.”

This year, in a feeble effort to simulate Julie and Julia, my neighbor and I decided that we would start baking each Saturday. Four weeks into our challenge and we’ve thus far made Victoria sponge, carrot cake muffins, a diabetic coma inducing chocolate meringue (aka a gooey chocolate stack), Norwegian cinnamon rolls, and a much bigger mess on my kitchen table than I ever knew was possible. My neighbor will tell you otherwise but the mess is mostly due to my interactions. During our second week of baking I decided that this had to be a therapeutic activity rather than simply that of leisure. My mother tells me that this is proof that I’m adopted from a bunch of militant Germans.

Its not that my family isn’t so much of the baking type as it is my lack of life experience which make the idea of baking so novel. With being even semi dependent on other people comes a huge amount of both tactile and practical ignorance. People make you a cup of tea because it is either impossible or you’d kill yourself trying to make one. As a result, you don’t know how your kettle works, nor how long you steep your tea for, or why different people can take the same request (will you make me a cup of tea please) and have it come out totally differently. Don’t even think of asking my how my washing machine works, all I know is I can’t turn any of the knobs on it.

On Saturdays I am once transported back to my childhood. Actually, that cliché is incorrect as it suggests that I have experienced the sensations of baking before. I have never done anything remotely like baking before. When I go to sprinkle flour, I am still shocked at how cool it feels to the touch. I marvel at how easily it slips through my fingers. I get frightened every time I come within about one yard of even a butter knife, irrationally terrified of stabbing myself with it. And I still refuse to try and crack an egg. I can only see disaster coming out of any attempt of egg cracking. This is where my overly logical adult mind kicks in no matter how much I fight to be childlike. It I manage to crush an egg rather than crack it, I’ve done it wrong, ruining the whole thing. My adult mind should then logically tell me that the world will keep turning and there’s more eggs in the basket as it were, but my mind has yet to reach that level of maturity yet.

Learning how to crack an egg has become my newest goal. Each week my neighbor holds an egg out towards me, lovingly offering me an opportunity to challenge myself. And each week I shake my head, agreeing to watch her do it for another week. Watching someone else do it correctly doesn’t teach you half of what you learn by doing it badly yourself. And so I continue to be surprised by the weight of an egg, have no idea exactly what it takes to crack its shell, and always waiting for someone else to do it for me.

How do you introduce yourself to someone who thinks that you ought to be dead?

It’s a situation that probably happens more than I know. I’m very aware that there are people out there who think that disabilities and ailments found in the fetuses of unborn babies should mean that the child is to be aborted. This is becoming more common on a worldwide scale, and there’s other fools like Peter Singer who claim to be philosophers of the modern age, but yet insist that animals have more rights than disabled babies. I am sure I have shaken hands with people who believe this either consciously or subconsciously, or think that having a disability would be among the worst things in the world. I usually do not know that they believe this, and it’s probably a good thing that I don’t. But in this occasion I did know.

My mother was taking a graduate level course last spring when she befriended a young woman named Linda. Linda is from China and there she is a gynecologist. She has come to America to know that she can practice medicine here and yet needs a different degree to do so. A statistical wizard and brilliant at mathematics, my mom immediately spotted her as a potential friend and aid in her biostatistics course. The two became fast friends, Linda being eager for company as she was so far from home. One day my mother showed Linda my picture. It’s from my senior year in high school and I am in a black gown with my hair down long, seated in my wheelchair. On my lap are three books, three hardback old-fashioned books. I forget what they are now, but they are classics. When Mom pulled out the picture, Linda did a double take and immediately asked what was wrong with me. My mother told her and Linda looked at her in disbelief. She said, “you don’t really mean…?” explaining my condition in the precise medical terms that she was taught. “Yes,” Mom said. I do.

Perhaps at this point I should explain that children with disabilities don’t often have the best fate in foreign countries, particularly that of China. If they have the misfortune to be born disabled it is not unheard of for a partial birth abortion to take place, or the child is left in one of the dying rooms that has recently been exposed in China. It’s worst than being born a girl. In a collectivist society, a disabled child most likely means a huge amount of tax dollars devoted to the health of somebody who probably won’t give much of anything back to the collective at large. The fact that Linda was an OBGYN meant that she too had made decisions concerning what children should live and die even while in the womb after amniocentesis. Linda explained this to my mother directly.

When I woke up, my early morning dreams the day I was supposed to meet my mother’s new friend, consisted of debates on partial birth abortions and were filled with images of doctor’s offices and waiting rooms.

One of my main faults is that when people seem confident and put together, I tend to believe them. As a result I afford grace and kindness to the people who seem to need it rather than those who are unaware, or putting on a show that everything is ok. As a result, in sort of a twisted humility, I think of myself as superior because I have no clue what I’m doing. Before meeting her, I saw Linda as one of the confident ones. I envisioned her always wearing a suit unless in her office performing surgeries and exams. She must be put together to strike out on such a limb and so bold a moral stance. I couldn’t think of any of my friends who would agree with her that doctors should have the right to decide who lives and dies before they are even born. I saw her as arrogant, proud, someone who had all her debates and facts in a line and could convince anyone to take her side.

But this was not the case. When I first laid eyes on her, Linda looked like a child, wearing a soft purple skirt for spring. She looked younger than me and still had teenage acne (although I found out later that she was five years older than myself). Everything about her demeanor said shy and humble. When she saw my mom she thrust a green paper bag of gifts into her hands, explaining that it was for both myself and my mother. She was not at all the moral extremist whom I had imagined. Looking at her I suddenly realized that people are more than what actions they take. We’re often taught that actions speak louder than words, and of course this on some level is true. But, was she choosing whether babies lived or died in her office, or did it come from higher up? Our actions are often more complicated than just our beliefs and what we want to accomplish. In a society that lived as hers did, if everyone shared everything, wouldn’t that extend to everyone sharing moral decisions as well? Even what I would consider to be the amoral ones.

So I looked at her again and smiled and said the one thing that I could think to say in such a strange situation. I stuck out my hand and said, “Hi. How are you? I’m Athena.”

I’ve stepped out of the Ethiopian restaurant in Elephant and Castle absolutely stuffed. Night had fallen by the time we had finished our meal and we dragged our overfull belies to the bus stop. The first bus passes us by even though we attempt to flag him down like mad. There are 12 minutes to wait in between the buses at this particular stop.

And then I see a homeless man who makes eye contact with me and I instinctively know that there is going to be trouble. He crosses the road carrying his bag and wants to kiss me on the lips. “Just one kiss.” And like always, I am stunned and speechless. He attempts to make a move. It is my friend’s 19 year old boyfriend who responds, shoving him backwards and making fierce eye contact with a strong “No” attached to it. “What? I just anted to kiss her, it’s not like I was going to hurt her.” “No.” he says again firmly. The homeless man shuffles off, yelling curses at Alex.

After we get home, I am in the shower and I feel filthy. Not because a homeless guy laid hands on me and attempted to kiss me, but rather I realize that it was the first time in my life that anyone had mentioned that this sort of behavior is wrong.

Perhaps I should explain. People, absolute strangers, try to kiss me all the time. While I was living in Chicago, homeless men and women would invade my space wanting to know my name or where I was going. And I was taught to accept it. Actually, taught is most likely the wrong word. But, to avoid commotion, I let it happen. This, combined with the fact that no one else knew what to do in such a situation meant that I was kissed by strangers a lot. Or followed while being asked annoying questions. My space is constantly invaded and I am used to it.

There comes a point in everyone’s life when people tell you something is wrong which always bothered you but you never thought to put an end to it, and all of a sudden you feel ashamed for your naïveté. You didn’t know that such behavior was a violation. You never thought that you were vulnerable and it was entirely possible to become a victim so easily. And then the fact that it took a 19 year old to know despite his immaturity what was appropriate and what was not, simply rocks the foundation of your world. You no longer feel like an adult. You no longer feel like you can take on the rest of society and live safely. The world suddenly gets very big and very dark. After this particular incident I felt helpless for several days, even in fear, and then like most things, it wore off and I moved on.

It still happens occasionally. How old the person is or what they’re wearing doesn’t seem to matter. I can usually spot trouble when it meets me on the street and I try to avoid it as much as possible. Sometimes even crossing the street myself after they have crossed it and are approaching me. Some areas seem less affected by these people. Some areas more. Elephant and Castle is particularly a place where I am on my guard. But sometimes I have no idea it’s going to happen. And as much as I want to cry out that my body is not public property, it still catches me off guard, particularly in the nice areas of town.

One night I was with two friends heading over to the Tesco Trafalgar Square. It was a late evening and one of them had just gotten out of a show that he was starring in. On our way over to the store, the two others decided that they didn’t need anything and would head home shortly thereafter. Then I saw him, another person who simply went into our cluster and tried to break into our conversation and touch me. I got out of our group and went inside Tesco while it was still lit. My friends followed me and I acted as though nothing was wrong. Then I made eye contact with one of them. “Can you stay here for a minute until he leaves? I don’t trust him.” “Yes, I will stay. Just go about your business.” So I picked up some sushi and milk, a combination that is most likely my own but being easy to get to as I realized I could get out of the store sooner, and went to the checkout extremely aware of my surroundings. Pretty soon after I was in line, one of my friends came over to me and said “We’re leaving now.” I looked over to him and said, “Is he gone?” “Yes” he said, “he’s gone.”

I sat across from the occupational therapist, going through his checklist and asking the standard questions. It was my last visit to the therapy center I had attended for 16 years. She was going through what she called the “release documents” which was to say that I was leaving the center, never to be a client again. “How have you improved in your independence since coming to this institution? Are you now able to live a fully independent life?” It was a ridiculous question on several levels. First of all I was approximately 9 months old when I first started going to therapy at the clinic. I would hope I had improved from a baby who could not sit up by herself in the past 16 years. But to further complicate the situation the therapist was asking for a definite answer to a rather nebulous question.

Do I live a fully independent life?

What the heck does that mean, “fully independent?” There are plenty of able-bodied people who aren’t at all “fully independent.” There’s the girl who is in a co-dependent relationship with her boyfriend and can’t leave him at any price. There’s the man who lacks self-confidence and therefore relies on his wife to make the decisions that he cannot take initiative for. Co-dependency is everywhere. What about the woman who can’t shovel her driveway when it’s full of snow, or calls her daughter every time the DVD player starts flashing 12:00?

In our society today, we’re not just dependent on people. Stuff ties us down and paralyzes us in an extreme way that most of us don’t recognize. SO often I hear, “I can’t go anywhere without my pillow,” or, “I don’t want to be away from wi-fi for longer than 3 hours. I need to know what’s going on.” The comforts of the home which we insist on are in their own way a confirmation of our dependency on things outside of ourselves. They tie us down, make it difficult to move at a moment’s notice, and close options and opportunities that might occur yet ask us to travel away from our home with all the comfortable stuff.

A good friend of mine is a philosophy professor up in Leeds and she asked me one day why I seemed to have this obsession with independence. According to her, none of us are independent. We can’t survive on our own. We need to go the grocery store and buy flour made by some farmer we’ve never even laid eyes on. I guess it depends on how you define independence more than anything. The word “depend” actually comes from an old Latin and French root meaning “to hang.” Properly defined by the dictionary, depend on or depend upon means “to be controlled or determined by.” Maybe it’s just the way I was brought up, but I can’t help but see the connection between being controlled and hanging oneself at the end of a rope. If the French root of the word is indeed “to hang” it quickly explains my fear of dependency. You are tying yourself to something that will inevitably not allow you to go as far as you want and much like a dog on a leash, eventually the choke collar will nip into your neck.

If we look at where the word comes from and the violent as well as suspenseful image of being controlled, we begin to wonder if independence means not being at the end of a leash. Maybe it’s about knowing that you have options to change your life and live how you would like it to be rather than living a life completely self sufficient? I can’t make my own breakfast or tie my own shoes. If you define independent in this way, my occupational therapist was a failure in her goal of helping me work towards independent living. But if it’s about having options and being able to control your life, seeking help if one method fails you and having the confidence that you will survive one way or the other, then I am independent. I have succeeded in being the driver of my life, being able to take it where I want to go, and ensure that I can meet my goals and dreams. Oddly enough I don’t feel independent during the hours I spend alone, even if I’m able to complete any task I want to. I feel the most independent when my front door revolves with people offering suggestions, borrowing a cup of flour, insisting that we live in a community where we value each other, help each other, and encourage each other to go as far as we possibly can.