Never Walked In High Heels

The water flows over a body

Regardless of what the plans were

With the stubborn humility of glass

And so they waited

Watching what they had

And wondering if they lost it all

Would Lady Dignity too soon pass

In the darkness, she sang of treasures

Which were placed somewhere else

Cradling her own head when no one held her

She told the others

Of times of courage and pain

The loss of a loved son

Never quite known

And the times of startling joy which came again

If someone told you the water brought destruction

What would you thirst for then

And if they told you it brought redemption,

Could you help yourself dive in

As the water rose past the walls,

Man made and cold in every way,

A life known but quickly forgotten

Began to restlessly wash away

And the muddied water was to rebuild her

Where imperfections astounded men

And when they told her not to come closer

She had to take off her fears again

The lies of tomorrow seduce what could be

Into a thing small, tepid, and tame

We look on the horizon for Forever

She holds fast with the watchmen
Waiting for the night to be reclaimed

A god who sometimes can’t be found

Will wipe our tears away

Yet she no longer questioned his survival

While standing in waters waist high

The sacrifice of strength through submission

Comes with the submergence in grace

And the pain that is only useful after it becomes familiar

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.”

“Going out with you is like going out with the crazy girl,” my friend says on the other end of the line. “No I’m not. I’ve always considered myself more of the girl-next-door type,” I replied. I can’t help but laugh. I had just rescued my chair from a building in the center of London. While attending a class in the basement, the lift had decided that it would be an opportune time to break, trapping me and my wheelchair downstairs. I am fortunate enough to be able to walk up the stairs, but my 400 pound electric wheelchair had to be left overnight. The next morning I received a phone call saying that the lift would be broken for at least three more weeks as new parts had to be ordered. My wheelchair was still stuck within the basement.

Seeing that I needed it to get around London, I immediately called two of my guy friends who are able between them to get the wheelchair out through a secret passageway (I kid you not!) in the building. Apparently, this passageway, kept behind locked doors, was formerly used as a shooting range for the British militia. So through the super-secret, hidden, locked, forbidden passageway the three of us climbed after my wheelchair was taken up three small steps in order to enter. We even had flashlights in tow to make it more dramatic.

To say that trouble follows me is an understatement. Don’t get me wrong, it’s rarely anything I do. But between the collapsing toilets, the broken elevators, and a plethora of dead batteries at very inconvenient times, I am beginning to be known amongst my guy friends as Calamity Jane, someone who is always a damsel in distress. They answer the phone and immediately wonder what sort of sticky situation I have now gotten myself into. The thing is, it’s nothing to do with me. Really, it isn’t. I live as normal of a life as you can imagine. I go up and down stairs using elevators. I accomplish precisely what any able-bodied person does. And it’s not as if I’m trying to scale the walls of Big Ben or create some other mischief. Believe it or not I’ve come to the conclusion that things of this world are not particularly ready for someone in a wheelchair to conquer.

None of my friends realize until I tell them that we live in a world in which disabled people are not expected to go out much. At work they estimate that as much as 75% of disabled people go out of their homes once a week or less. This is the city in which public transportation can be a nightmare for anyone who doesn’t travel on two feet. Services such as Shop Mobility and Dial-A-Ride which as supposed to help individuals with physical disabilities to get around put a strict limit of using their services 6 times a month per person. For me and my career, I’m lucky if I don’t need to go to 6 different places a day. Such restrictions not only prove the point that disabled people are not mobile, it reinforces it, thus creating a cycle that London has yet to break out of. Unless you’re me, and then you run the risk of being trapped in the basement of a building whose lift has just gone out.

I once had a wheelchair vendor come to my house for a yearly tune-up. He was able to plug a computer into my electric chair and get a reading of exactly how far I had traveled in it within the past year and a half. When he saw the mileage, he dropped his computer. “You ride your wheelchair hard. It wasn’t meant to be used this much.” What does he expect? My life has taken me all over the city and actually all over the world. When I buy a wheelchair I expect it to keep up with my way of living, not the other way around.

I am often told by my friends that people still stare at me when we go out together. This actually is news to me as I usually don’t notice. But the fact that seeing someone out in a wheelchair still is a reason for stares, shocks most of my friends as much as it does the other party in seeing me.

I’m not Calamity Jane. I’ve always actually considered myself a girl-next-door type. But the fact that when my number pops up on the phones of my guy friends, they begin to itch, wondering what adventure will come next. And in this way, maybe my friend is right. I guess every neighborhood has one and I’m it. I am the crazy girl-next-door.

When I told my mom that I would never go back to the UK, she immediately said I would. As I’m on a boat going home, curving around the Thames, those five years seemed to have never happened. A lifetime has passed and I am doing exactly what I swore I wouldn’t do.

The first time I was in London, I constantly felt as though I was drowning. Going deeper and deeper it was clear that I was not in charge. My assistants were, and I would never be able to take the reigns away from them. From before we even left home in Chicago, the tensions were clear, and as we crossed passport control, I kept saying to myself over and over, “tomorrow I’ll wake up and everything will be better. Everything will be as it should be.” That summer we would spend three months based in England but also going to various places in Europe as I was completing my research for a thesis. My memories of those that time can be best summed up in two words: fear and hunger. Outside of that I don’t remember going to the Eifel Tower, or the first time I saw Big Ben. I don’t particularly remember the Swiss Alps or being in a bathhouse in Budapest. Fear because one of the assistants was constantly threatening that my chair would go into the river if things didn’t go his way. And since every major European city has a river, it was a constant danger. And hunger, because the assistants saw the fact that I needed help getting food as a way to maintain a level of control. Sometimes it wasn’t ok to eat anything. When they felt like it, it was, but the food was minimal.

How I ever got a combination between these two assistants, I don’t know, but after I had returned from my journey, several people commented that they knew these individuals better than I did and they immediately thought of it as a bad idea. Why didn’t they say anything before? I will never know. But before I left people encouraged me that these two would be good at keeping a schedule and help me with research. We did indeed keep our complex schedule keeping interviews and seeing resources at an alarming rate. By the end of the summer we had been in no less than 12 countries, and it had all gone exactly as I planned back at the university when I was setting up logistics. It was just that none of it felt the way I had planned it to feel. Several times my assistants told me that I should never leave the United States again because it was so difficult for me to travel and they had to do so much of the work. Six months later I finally had a doctor tell me that what I was facing during that summer was abuse.

When the psychiatrist gave me a diagnosis, I immediately asked if he was sure. “I thought that’s what they gave war veterans after being in horrific situations. I’ve been in nothing of the kind. Just a trip to Europe that didn’t go the way I thought it ought to.” He said to me, “But you were in a horrific situation.” It would take me several years to realize that he was right, that my once insulated world was shattered. It was almost as if I had a demarcation between childhood and adult life. And sometimes, despite the amount of grace for forgiveness I have sought, and successfully obtained, I still wish I could go back to before that world was shattered.

So, at home, I swore to my family I would never return to the UK. Without thinking, my mother made her response.

The promises we make ourselves when we are in pain are some of the most dangerous oaths we can ever commit to. These promises inevitably shut down our world and shrink life. On one level it makes sense. We are hurting. And who does not cower in the closet when they know there is a monster outside that is two big for them? Mom knew that my oath was quite literally taking the world and shrinking it down to places I would go and places I would not go. When I called her up exactly nine months later telling her that I had gotten an internship that I could not pass up, and I was excited to be moving back to the UK, she wasn’t surprised in the least. Sooner or later she always knew that I would find the strength somehow to re-open what I had locked away and refused to explore.

The boat culls around Canary Wharf and is headed towards home. The geometric skyline looks completely mythical and fierce in its proportions compared to the rest of London. I am lucky that, despite my diagnosis, I don’t get many flashbacks, and when I do, I can usually control them. I am headed home and I can see my dock from Canary Wharf as the boat approaches. It’s a Tuesday night which means there is Quiz Night at the pub with people I know and trust. Tomorrow I have and audition followed by a concert with a friend at Saint Martins. It seems impossible that a city in which I felt so much terror could grow within three years to be my home and is now a place for joy.

And I shudder to think what would happen if I kept the promises I made to myself while I was in pain.

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 see it all the time, particularly in older couples, but the truth is, despite what I would like to think, most of my married friends are headed to it too. Couples get to a point where they just miss each other. One person attempts to show love and the other person doesn’t realize it, or it doesn’t come in the form that she is expecting, and so she complains that he doesn’t love her at all. Likewise, she didn’t to anything that he thought ought to be done. And so they miss each other again. Both of them are attempting their best to show the other all the love in the world. And yet there is no (…luck?)

Dr. Gary Chapman writes in his book that there are 5 basic love languages. We have a primary love language, and then a secondary one, a way we show love, and a way we automatically receive love. Briefly they are: physical touch, quality time, acts of service, encouraging words, and the giving of physical gifts. For me, the hardest love language to accept has always been the idea that acts of service communicate a form of love. When you’re disabled and always needing help, it becomes customary to constantly have individuals help you. It’s just what needs to be done and so you assume that every ramp somebody builds with their own hands, or every tire they change, is simply done out of necessity rather than love.

One of my favorite moments in the movie Anne of Green Gables is when Marilla tells Anne, “Anne, you have tricked something out of that imagination of yours that you call romance. Have you forgotten how he gave up the Avonlea school for you so that you could stay here with me? He picked you up every day in his carriage so that you could study your courses together. Don’t toss it away for some ridiculous ideal of romance that doesn’t exist.” I know I have myself been guilty of that exact fault. Missing the love of many people who are directly in front of me who love me because they do not look how I think suitors or adorers should look and act. If he doesn’t hug me, and yet he spends 8 hours on a Saturday trying to fix the electric door opener on my backdoor, should the physical touch be taken as a more suitable or a more devoted act of love than the quality of service?

One need only to open a book or switch on a TV to get a rather absurd ideal of what love ought to look like. He brings you a dozen roses to say I’m sorry but yet refuses to change his ways. She completely blows your mind and yet refuses to respect your parents, insulting them and driving a wedge between you and the two people who love you most. If everybody is different and unique, surely the way they express love is as unique to them as their own voice, or their own way of moving. And if we owe it to everyone to try to understand their background and where they are coming from, perhaps we also owe it to them to try to understand their expressions of love, their natural expressions of love, rather than complaining that they don’t suit our ideal.

Love is actually surprisingly easy to miss and it is simpler to assume it isn’t there when it doesn’t take the form we desire to see. Over and over I hear, “look for ways to love your neighbor.” That’s important and crucial. But are we also looking for ways in which other people show their love for us, even if it’s not necessarily in the form we expect?

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.

This week I’ve been reading about an old friend and her family history. In recent months this author has become a substitute grandmother, filling me in with all sorts of wisdom, platitudes, and calming truths that I was never given. She tells in her books about her own family, how her great grandmother was the daughter of the ambassador to Spain, and grew up in the Spanish courts. How her parents were reporters, following news stories wherever they could in the days of WWI. They were citizens, soldiers, and those who enlisted bravely. Women who knew how to use a sword and run a house at the same time.

And then there’s my family. We’re from mid-America, poor, and relatively suburban. Well, not really suburban I suppose, though it seems particularly uneventful to me. I’m pretty sure that a member of the family or two had a run in with the law. We have no heirlooms that I know of. My grandparent’s basement is legendary for holding things but nothing really of any value. And they know that most people when they grow up and become independent adults, they choose to become close to their family. They leave for a while and then return, settling down and starting a family of their own. But doing that was never really in my mind when I embarked on adulthood.

They say that a family is equal to your roots and that having such people in your life will guide you as well as make you grow tall and strong. But, what if the roots you come from don’t run particularly deep? Or you don’t necessarily want to go in the direction that they’re going? What then? To what extent is blood thicker than water? And does this really mean anything? Are you necessarily bound to any family just because your genetic code is similar in some way?

In college, I was the only girl in my dormitory who didn’t come from what could easily be termed as “old money.” Lots of girls had monograms engraved on their tote bags or jackets with family shields pinned on them; their emblems and symbols, histories and romances ran deep. So deep that it was nearly legendary. And then there was me. It wasn’t uncomfortable so much as it was surprising that people even existed who treasured their bloodline so much. All of this (…?), the weight of standing on your ancestor’s shoulders seemed to be the only way to get anywhere in a new southern society.

For those of us who lack an ancient family tree that’s knotted and crooked in some places, although strong and formidable, if we don’t have such roots, do we stand alone? My family can be considered small and when I am away from them in the United Kingdom, holidays can be rough. It is during this time that everyone goes to their family. But, after several years I have learned that a family is made, created almost, rather than genetically passed down. I find myself in the UK with people who are closer to me than cousins and young women who have become my sisters within the past several years. Because like any transplant, we go down, digging our own roots and holding on to whatever we possibly can. Once we’re a little bit stable, we reach out and make our own new family.

There’s a homeless man outside of Waterloo Station. There’s always a homeless man outside of Waterloo Station, and I didn’t think today would be any exception. The biting cold whips around the coats and scarves of myself and my companion. She is older, considers herself a hippie and only wears natural fibers that are organically grown. Her hair turns silver a little more each day adding to the image of wisdom and magic she already exudes. By the time she was my age she was already taking place in college protests demanding peace and equal treatment around the world. I respect her for her passionate views on humanity and her liberal amounts of love.

The homeless guy spots us and smiles, reaching out his Costa cup that has been torn in half and begins asking us for money. My friend holds on to my arm tighter and urges us to keep walking even though I hesitate and slow down to look him in the eye. I smile, shake my head and walk on. “Keep walking. We have a government that can take care of him better than we can. We’re not experts in his condition and problems.”

I’m confused by her statement. Why do we assume, all over the world, that the government will take care of people in need? That the government can make all of the problems disappear? That someday there will be no poverty and no homeless if only we had the right set of social institutions and collective practices? We all have some idea that if just our party, our guy, our religion, our class, our race got into office somehow, that everything would better. And we lie to ourselves about this every election year.

Most people think that my political views don’t include things like charity or giving the little guy a chance. They assume that I’m highly liberal or highly conservative, fitting into one of the extreme poles of the situation. More often than not people say that I don’t care or I’m selfish because I don’t fit with their ideologies about what human rights are or what charity is. That’s simply not true. I believe that human rights are better described as human responsibilities and we as individuals have responsibilities to everyone else, to make sure they can and will achieve the highest standards they can possibly reach. This does mean taking action at an individual level rather than waiting for someone in Washington D.C. or Parliament to agree with us and letting them take it from there. I’m afraid that it is our nature to assume that just because a government has a program somewhere, everything is ok and it is reaching the people that it needs to. I see this all the time in America. People assuming that just because there is a law against disability discrimination that it never happens, this simply isn’t the case. Governments cannot pinpoint specific problems the way we can as individuals, and so saying it should be everyone’s responsibility is essentially saying it never will be anyone’s responsibility. Like everything else, responsibility and the enforcement of justice gets diffused so that nobody feels that they can toe the line alone.

I know I probably pass by too many people in need on the street, not just the ones crouching in the shadowed doorways trying to keep warm, but the ones who need help in my own neighborhood, who have a home and food on the table, but are desperate for so many other things. I assume when I see them living their lives independently and unobstructed by a set of stairs, I assume everything is ok and everything is provided for simply because they have two hands and two legs that work. And to some extent I need to do this in order to get anything done in my life and in order to fight for justice and expand the borderlands of creativity (my two objectives while I’m on this planet). I can’t spend every single night taking people to churches and shelters ensuring that they get help, when I need help myself so much of the time, but I also know that things put in my path, regardless of if they’re directed towards me or just in the obscure corners of my field of vision, they are there, in whatever form it may be, whether it be a physical obstacle or the fellow human in need, to be aware of and to face. And while I might not be able to do anything for him in that moment, knowing he exists, knowing that the situation, the condition of life exists, means that someday, when I am in a position to do so, I may be able to advocate for him, having never seen him again. In this way, it is my duty to acknowledge the injustices, if anything, to stay grounded in reality.

In one of my favorite books, the hero tells his love interest, “nobody gets anywhere by denying reality.” I think of this often, the second I try to avoid uncomfortable conversation or pretend that everything is fine. I’m in the car with my mother and we are discussing this book. The conversation soon turns to the difference between lying to oneself rather than lying to others. Two different categories of sins, in my opinion. The latter we all know is wrong. But the former?  How does one begin to lie to oneself, if he knows reality to begin with?

But we do exactly that. We all hate certain aspects of our lives, our relationships, much preferring to push those into a corner and soothe ourselves, rather than face what are seemingly minor problems full on. I never really understood what lying to yourself meant, until last semester when I was faced with conditions in my home that I really didn’t want to see. However, in my small two-bedroom flat, there was very few options to get away from person problems. What insisting on not lying to yourself actually means is that you have to see what is directly in front of you.

In acting, we call it living in the moment, which sounds easy, but is extremely difficult if not next to impossible to accomplish, both onstage and in reality. It’s better to understand what it means in life by first understanding what it means in acting. Briefly, it means that while an actor is onstage, he cannot be thinking about how he delivered the last line or how he will deliver the next. He can’t be thinking about what he left inside his dressing room or the technical difficulties that arise in the next scene. He has to be listening, in only the matter of the moment. He has no idea what will come next, no idea how the play will end, and at this point in time it doesn’t matter. He only needs to accomplish what has to be done now.

This is not to say that the actor denies planning ahead. Indeed every option that is offered to him by other characters, he must consider the possible outcomes of. But it does mean that nothing exists beyond what is on the stage.

In life, problems resemble a cancer. The more you ignore them or fear them, the bigger they grow. Oddly enough, if you obsess over a problem, the same thing happens. It’s a sort of ontological joke. That is, if you don’t imagine a successful outcome to begin with, if you don’t envision your cancer actually getting smaller, chances are greatly lessened that you will ever make a full recovery. So you must first get diagnosed and then take action accordingly. But denying that there is a problem and denying that there is a solution is ultimately practicing a form of escapism in your own life.

Emily, in the play “Our Town,” says it best when she questions whether anyone ever appreciates a single moment that they live in. According to the stage manager no one but poets and saints are able to even begin to do that. What’s in front of us on a daily basis is without a doubt highly overwhelming. Even looking at a chair and thinking about all the actions and reactions that are going on within the world of that chair on the subatomic level is enough to make your head spin. But, to then try to plot and plan what may or may not happen a month, year, or even a week down the road is biting off more than anyone can chew. All that we have control of is here, now, and barely that. No amount of lying in order to make oneself feel better, safer, and more at ease, will change what actually may and will happen.

Having a disability helps master this task to some degree. You have good days, and you have bad days. Days when you literally can climb a mountain, and days when you fall out of bed. On the good days, you know that there are bad days coming, you’re not suddenly going to be healed and have that be that, but you also know that you have to enjoy a good day when it comes. Going outside for a walk that lasts a little longer. And on the bad days, it means that you can’t go any further before you figure out how to, quite literally, unlock the door in front of you when your hand is shaking from spasms. And then, after you unlock the front door, you figure out what the next step is. And then the next. And then the next…

“Is it easier if you are disabled from the beginning?” she asks me on the phone. My friend has been sick for months and she recently had to break down to get a handicapped parking badge. Not the red ones which are temporary, but a blue one. This unknown medical condition is going to be hers for quite some time. Maybe even forever.

“No, it isn’t.” At first I can’t explain why having a disability from the day you are born isn’t any easier. It’s a question that a lot of therapists have asked me. Kind of like, do you think it is better to have loved and lost than never to have loved at all? Do you think it’s better to have walked and then lost the ability rather than to never have the ability in the first place? And yes, I do, actually. Being a child with a physical disability is one of the worst things you can imagine. You don’t play on playgrounds or get to bake cookies like everyone else. You sit and watch and are more or less at the mercy of people deciding to be your friend rather than making your own.

When we are kids, regardless of abilities or not, the fact is, we have no idea what we’re signing up for in life. Even in high school we think, go to college, get married, get a job, everything will run smoothly. What we don’t realize is that human bodies fail. All of them. Fail us, and what we want them to do, eventually. My mother used to say the minute we are born we begin to die (she’s normally a very cheerful woman) and while mentally you realize that’s true, you don’t feel the impact of it until you are much older and your body does begin to break down and fail.

My sophomore year at university, all of us saw my friend’s body simply revolt against her. For days she couldn’t get out of bed and see past three feet in front of her face. She would recover, and then relapse, and then recover and then relapse, each recovery time being shorter and the relapse time being longer. Now she is married and is trying to figure out life as a legally named disabled person.

In the past few years watching her, I have begun to see my other friends, who are as young as I am, have their bodies revolt and receive permanent conditions that they never dreamed of getting at this age. It’s forced me to wonder what will happen twenty-five years down the line when I really watch them age, watch them not be able to climb a set of stairs as quickly as they used to, or even after an accident that leaves them paralyzed. What to tell them when they ask me if it’s easier to be disabled from the beginning? What to say when they need advice and they want to be told that they will be able to rehabilitate themselves and life will be as easy as it once was. For that matter, why do I think I’m wiser and above further ailment simply because I’m disabled to begin with? My condition, if you don’t take care of yourself, means that you will age faster. Arthritis has a higher risk of setting in at a very young age, and there’s little to stop the aging process even if you’re disabled to begin with. Your body will break down even more.

We are at a friend’s wedding, and a week after getting her handicapped placard, my old university friend is feeling well enough to join us for the bridal shower and help us get ready in the bride’s chamber. The day is full of joy and life, everything that a wedding ought to be. She follows me around, helping me open doors when I can’t manage them and the flowers, making sure my dress is on straight, walking with me to the bathroom and constantly holding my hand. She will not let me go. In the bathroom stall I am unable to lock the door and she offers to hold it closed. She is bending down and a thought suddenly occurs to me, “Don’t make yourself pass out with your head below your knees.” She immediately sits on the floor, realizing that this is a distinct possibility for her.

“I guess I wouldn’t be very helpful to you in England anymore.” I hear the small voice on the other side of the bathroom stall and it breaks my heart realizing how much has changed and how much her world has been limited recently. The thing is, I wouldn’t say that she would not be of help to me. Friends, regardless of their physical ability, true friends, are always helpful along the way, in ways that are unique to them and the temporal bodies they occupy.