Never Walked In High Heels

Ever had an opportunity stalk you? The ones that follow along and clip at your heels are never the ones which you are ready to welcome with open arms. And there are the ones which you’re ready to reject as soon as you hear about them. But those that you feel ambivalent about that keep popping up in the most annoying places… such as my inbox.  

It all started a month ago while battling (what else) a flat tire in the centre of London. A former choreographer I worked with was passing by and stopped to make small talk. He asked for my number to give someone at the BBC who was looking for wheelchair dancers. I admit now that I was only half listening as, ironically, I was thinking of how ungraceful I was going to look while limping home with a flat tire. I gave him my card and told him to pass it along to whomever he pleased. 

I didn’t hear another thing about it for three weeks. ‘Must’ve been another thing to come around which wasn’t meant to be’ I thought to myself. There are so many of those when you’re in the arts.

The next day I received four new emails, from four entirely unconnected people mind you, which included a casting call from the BBC. Apparently “Dancing with the Stars” had become such a hit that now the network wanted to do a spin-off about people in wheelchairs. Even though I couldn’t place why, my insides were squirming. The next day, two more emails came, then a note from a producer on my social networking site, then a call from another former teacher of mine, then a Google Ad.

It was utterly counter intuitive. Here I am waiting to break into the world of performance and I wasn’t leaping at this opportunity.  What was wrong with me? This would probably expand my network. I grew up wanting to be a ballerina more that anything in the world. As I was bombarded with it, the less sure I was of anything. Did this mean that I, perhaps, didn’t want to become a performer at all? If I wasn’t excited about this opportunity was this proof that I lacked drive, didn’t have ‘it,’ and was unwilling to run the race for the long haul?  Professional panic was ensuing at full force. 

Here’s the thing. I dislike disability art. I really do. I hate that we live in a world where I get to be defined by what I can’t do, and what I can do seems to fall by the wayside. The fact is, there’s a whole disability culture out there which, I think, seems to separate rather than include. “Disability Art,” “Wheelchair Dance,” what does it mean in these phrases that we put the artist’s weakness first in the title, thereby qualifying it while at the same time lowering our standards. Don’t expect this to be fantastic, it is after all disability art. What if we classified Monet as “that artist who couldn’t see very well?” 

I wasn’t raised to be disabled even though I have been diagnosed since birth. The teachers whom I respected never took the fact that I was in a wheelchair as any sort of excuse. My best friends never think about it. Asking me to fit in with the disability culture is like taking a girl with Japanese heritage out of Greenwich, dropping her into Tokyo, and expecting her to act like a native. It won’t happen, and the expectation is absurd if not prejudicial. 

I have had requests, much like this one, where I could choose to be defined by my disability. And I can never bring myself to take them. I refuse to believe that my weakness, my disability, is the most interesting thing about me. And for someone who is trying to get the world to see past her disability, such opportunities seem more than counter productive. They seem deceptive.

Declaring a Miracle

By the time I was eight years old, I was a religious fanatic. I was convinced by the televangelists that if I played my cards right, God was going to heal me. And, of course, with each morning would come the disappointment of not being able to play kick ball, still having to depend on someone for meals, and still being gawked at rather than listened to. On Saturday I turned twenty-five, and now I have good days where I appreciate having shoes for five years which still have never been walked in, or how one can use a stranger’s stare to her advantage.   But there are still nights where I go to bed praying for a miracle. 

This somewhat large concession comes with a massive amount of irony. Nothing will get me to walk out of a church faster than a little old lady saying that she is praying for God to heal me. I think its the idea that our idea of perfection is somehow supreme to God’s which I find infuriating. The only way the world can be perfect is if it fits our own view of perfection, and anything that isn’t how we think it ought to be is a flaw. It’s like saying God isn’t big enough to have perfection in any other way than what is easy for us to swallow.

What constitutes a miracle, as opposed to a coincidence or perseverance?  Biblically speaking, when Jesus healed the paralytic, he first said, “Your sins are forgiven,” and then he healed the guy. Which was the bigger miracle there? The act of healing, the act we more readily concede as ‘a miracle,’ actually only took Jesus laying hands on a man. The first miracle would take God walking among us for thirty-three years and sacrificing himself in blood. After erasing one’s sins, healing the guy would be a piece of cake.

And yet, we actually need to be reminded of the first miracle via Easter or communion. A bit of bread and a bit of wine serve as a mental check to ensure that the act that ransomed us does not slip our minds. Which means, without these reminders, we most likely would forget. So, if I’m likely to forget how I became liberated, how much more likely would I forget that I was disabled in the first place? It would slip my mind entirely, and I would pass carelessly through life – because that’s what I want on some level, an easy, unexamined life. I want a life that lets me credit myself for every day a survive. We all desire that, deep down.

I used to pray for a miracle, and in the process I would miss the ten thousand miracles that were there in front of me. In waiting for a miracle that came in the specific shape that I thought it ought to take, people would open doors at just the right time or someone would come to fill a spot in my life which no one else could fill. And for some, those might be coincidences. They do certainly look that way as we go forward in life. But looking backward… Well, often it seems as if today’s happy accident will actually look much more like providence tomorrow. And really, which is more amazing?: The single miracle that is so life changing that you forget what life was before it happened, or the ten-thousand small miracles which make up one’s life in the first place?  

“It is a tale told by an idiot,

Signifying nothing.”

It is a very curious phenomenon which can make a person actually question his own sanity, but ever since I entered college, I sometimes wonder if I’m losing my mind. It doesn’t happen when I’m alone, just when I’m listening to my superiors. This strange occurrence is taking hold of every sector of our lives and seem to be spreading like a virus. Soon we will be having national competitions in the amazing ability to talk for hours and say nothing. 

I recognize that due to my disability, some communication problems are evident. Despite being an award winning speaker, comedian, and a RADA trained actress, there is still the occasional idiot I run into who insists on talking to my friend rather than me. I still politely remind waitresses that they weren’t listening when they got an order wrong. And on the occasions that I bump into people who say they can’t understand me, I just bring up that it must be really annoying to only understand one language. They always understand that part. But this is not what I’m referring to.

I have heard people, at terrifyingly high levels, go into a full monologue which I can’t even begin to pull a thesis out of. This extract is from a email I received from a professor concerning a room hire:

“If you think this not large enough there is a rehaersal space ( Space 1) which could hold  70. This is free in April but having given me dates they now want to confirm on Monday what is actually available.” 

What?

OK, Beyond the basic grammatical errors, does this make any sense? A room is free in April but they need to confirm if it’s actually available. Is it free or not? If it is free, why are we waiting for confirmation? If we don’t know, why are you making it sound as if we’ve discovered something? Why can’t you just be clear and give me some information? 

It is like when you ask a friend if she liked a movie, and she says, “Well, I liked it, but I didn’t.” That actually doesn’t tell you anything because in truth she doesn’t know if she liked the movie in herself. She won’t give you a clear answer because she can’t. But to hide the fact that she doesn’t know the answer she veils herself in double talk which is, of course, impossible to decipher. Now she doesn’t look foolish, you just feel stupid. 

What makes matters more disturbing is this language schism seems to go both ways. The second I ask a direct question, a teacher stares at me blankly, and I’m wondering if I’ve slipped into Greek without meaning to. Hello? Can you hear me? Is this thing on?

“So can we rent a room or not?”

And there’s about five seconds of silence before an incomprehensible attempt at an answer.

“Well… er… as I just said…”

Really, if you don’t know the answer, just say so rather than wasting time.  When did we get to a point where we have lost nearly all capacity to communicate? So quickly we want to forget that words mean something that it feels like we have no desire to be held accountable to what we say. If it sounds like I know what I’m saying, I don’t actually have to think about it. 

When I was very little, I would listen to adults talk, sometimes getting lost in the conversation that would sashay above my head. I wondered when I’d be old enough to follow what was being said. Now I look at the students I teach and see them wondering the same thing. Sometimes I can’t help but lean over them, probably stepping way out of my bounds as a teacher, and whisper:

“Sometimes, if you can’t understand what an adult is talking about, its because the adult doesn’t know either.”

If you’re anything like me, shopping in a wheelchair is remarkably difficult. Often I look at clothes on the rack just trying to determine if they’re even worth the energy to  put on and look at myself in the mirror. More often than not, I give up. I sit down all day (clothes out there are usually designed to look good standing up), zippers and buttons are difficult, and most clothes seem to drown my figure.

Then I found a website called Myshape (myshape.com). The premise is so simple that it’s a wonder why no one  has thought of it before. “While anyone can just buy from us at MyShape, we encourage everyone to set up their own Personal Shop. It’ll take about 20 minutes.“ During this time Myshape asks you to enter specific measurements and style preferences.

Next to hiring my own tailor, Myshape has been the best solution to my 

fashion woes. I spoke with the company’s Chief Customer Officer Sarah Porubcansky to understand the company’s philosophy.

“I’d say – we all have “uniquely shaped beautiful bodies”.  Think balance, think features you’d like to stand out a bit more than others. And keep the admirers eyes up and down – but mostly on your smiling face. “  For Porubcansky, what Myshape offers each woman is her own individual shop with clothes which are guaranteed to fit and flatter her. For me, personally, I receive a shipment from them, and I know it will fit perfectly. 

But in addition to avoiding fitting rooms altogether, Myshape offers me the opportunity to cater to my fine motor needs. “The details of each garment is listed on the detail view. We’ve got a fabulous Zoom feature that helps you see the garment up close,” explains Porubcansky. In other words, if you can’t wear a dress with a zipper in the back, you’re not going to accidently order one, which is a mistake I’ve made with many catalogue orders. And if you’re in doubt about a particular fastener (or any other issue), a smart, spunky, and engaging live help team is ready to answer your questions. 

Ms. Porubcansky told me, “We like to say – you want the compliment to be ‘you look great today,’  not ‘what a great ____ you have on.’  We want women to shine as who they are!… we are so hard on ourselves – too hard. When a garment doesn’t fit – we blame our bodies – not the garment.  Men blame the garment – maybe this is were we need to be more like men?“

Careful, let’s not get carried away. 

“Do not let the hero in your soul perish, in lonely frustration for the life you deserved, but have never been able to reach. Check your road and the nature of your battle. The world you desired can be won, it exists, it is real, it is possible, it’s yours.”

As I grow older, it can sometimes be an increasing disappointment. In my quieter moments I can hear an ongoing mantra, as consistent as the clicking of a train on the railroad tracks across from the neighborhood, as it grows into the ebb and flow of the nightly schedule. “It wasn’t supposed to be like this, the world wasn’t supposed to be like this. “

I’ve heard my friends say this numerous times, but not the way I mean. They say it in reflection of poverty, unrest, and fragility. And I can see where they are coming from.  When we were children, we weren’t expecting the very harsh reality of a fallen world. But there’s something even more sinister lurking in this society. Nobody ever told me that people will rest on your ability and use it as an excuse not to foster their own. 

I don’t know why this is surprising, it was evident for me to see in the grade school math class where we were forced to work in groups. All of the sudden, I had so many friends that  kids were lining up to sit at my table. And everyone else’s grades shot up, except mine. Eventually, the smarter kids in the class would get fed up and try to sit together, only to have the teacher claim that the new seating arrangement made her “uncomfortable” and that she would have to change it.

In recent years I have witnessed the death of personal responsibility. Maybe it was dead when I was a kid, but I was taught that assuming the mantle of personal responsibility was the first step in protecting one’s precious personal freedom. You cannot be free and still remain dependent on anyone, nor can you be free and be forced  to save others who do not value their own freedom. The now consistent demands of government and intelligentsia that those who have succeeded should now share their success with those who haven’t even tried only discourages success. What is the point of moving ahead if it only guarantees another chain around your ankles? Why bother trying to earn more money if it’s only going to force you into a higher tax bracket? Why take personal responsibly for yourself if it forces you to become responsible for everyone else as well?

Thus we breed irresponsibility. 

Finding someone who loves his freedom is becoming next to impossible, and thus have ended a good many potential relationships on my side. Someone who recognizes the intrinsic value of his freedom can only then know the vast and irreplaceable value and potential of any human life. I couldn’t see myself with anyone who didn’t appreciate that his life and freedom was connected directly to his actions. I wouldn’t want to be with someone who didn’t love being free. 

There’s got to be some people left who recognize that the motor of the world is man’s mind and that are willing to hold themselves to the standards it takes to ensure progress.  I’m not that last person to love my life and my freedom, am I? If I am, it explains a lot. Now I know why people find me intimidating. But these are visions that I cannot give up in a world which demands self sacrifice from its most successful. As much as I am hopeful about finding these men, if I don’t find them, I cannot compromise  and bring in someone who does not value his life and his freedom enough to keep his standards high. 

Life wasn’t supposed to be like this. Opportunity and innovation was to go as far as a human mind was willing the pave the road forward. We were never meant to be held back by a by a government that was there to protect us. But the people who refuse to recognize their own value cannot ever recognize mine. And if that means it will be while before I find a partner to meet my standards, that is fine. I can wait.

As long as I don’t have someone, who encourages dependency, tied to me, I’ll be fine. 

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. 

My friend found this letter posted above a table in a little wine bar here in London. Apparently we all have “one of those nights” from time to time. 

“Dear Pascal. Here is your table back. I was at La Boujulais the other night and apparently got very drunk. The next morning I woke with your table. I am very sorry, please accept my apologies.

(signed)

An embarrassed regular”.

I used to spend my mornings with a man I called Mordichai. Much like the character he is named after, he was a long-time outcast in his family and would, no doubt, be considered one by my own relations if they had ever bothered to meet him. I would sneak into his room before classes began and try to warm my hands, wounded from a combination of the harsh Chicago cold, and the reality of living in a wheelchair. Looking to him for a combination of wisdom and simple sanity, I would sit at Mordichai’s desk to write, to read, or simply trying to sort through the inner workings of an eighteen year old’s brain.  Each year I grew a year older but it seemed as if he did not. Rather, with each passing year we became closer in age and a learned more of his reality and he learned more of my secrets. 

Becoming a woman alongside Mordichai and his partner provided me with grace and an added level of support to the already strong scaffolding that my parents gave me. They were a couple with whom I would disagree fiercely and still know that I was loved… perhaps loved even more because I had the strength to disagree.  As time went on, our conversations revolved more around big topics, which were out of my grasp when we first met and I was fifteen. Questions of freedom and liberty, morality and common good haunted us some nights as our meeting venue changed from his classroom to the fireplace in his own home. I was now living independently, working part time, and continuing with my education at the university level. 

And as questions became easier to grasp, the answers grew increasingly slippery. Until one day it occurred to us both that our America is not limitless, and the entitled freedoms that we were promised in the Constitution have yet to be delivered in full. My world had to stop at the first unpaved road I came upon so long as any wheelchair could not cross it. And for him and Tom, what was everyone else’s private business was still held in court, waiting for a decision that seemed obvious to me.  

In many ways, I am jealous of the media’s attention to Mordichai’s issues over my own. And who can blame them, the image of an angered drag queen will no doubt get more viewers then a group of paraplegics crawling up the steps of the Capitol building at an abrasively slow rate.  What’s worse is that as a disabled person, my rights are constantly pitted up against other causes, such as the new environmentally-friendly taxi cabs which, in order to save on fuel,  have been made so small that no wheelchair will ever be able to fit inside. It’s an either  / or society. Where Mordichai’s right to have his partner visit him in the hospital gets debated on national television, and in the same week the American with Disabilities Act gets stripped by the Supreme Court and nobody notices. 

“This is why you’re a writer. That’s why you need to always have your pen, and hands that are at the ready” Mordichai’s voice echoes in my ear. To give a voice to a community that it still voiceless sometimes feels like trying to remove barnacles with one’s bare hands. To find my own voice on top of that challenge can prove to be as effective as a screen door on a submarine some days. Sometimes I think we all wish we could finish growing up before the troubles come. 

I went back to visit Mordichai a few weeks ago. He is getting older, even though it’s not always obvious. The winter wind is nowhere near leaving Chicago in April and I can feel a film of salt covering my hands as I come inside. He asks me how I am, and I don’t know where to begin. When did life scatter to a thousand different directions? I start with the most obvious, “My hands hurt from this horrible weather. How do you stand it?”

“I’m not in a wheelchair,” he begins. We all have that one thorn in our side, which we wished to have removed. And yet it painfully stays there to shape our world. 

Without speaking he gets up and leaves, only to return will a bottle of lotion that smells of sandalwood. He puts some on my hands and rubs it in. He starts muttering about how I should be taking better care of myself, about how I only have so many units of energy per day to spend and I should be more selective in the battles I fight. Sometimes having him around is like having a second father. I argue with him, if for no other reason then it’s my role to do so. It doesn’t matter because we’re both convinced we are right. I need my hands so I can go places and be just like everyone else. He stops me there.

My hands, he reminds me, should be used in a way nobody has ever  used them.

I wear the top button of my jeans unbuttoned at all times. For most women this would make me a slut, but in my case it just makes me pathetic. Today, I have funky red hair, I’m 5’ 2”, one hundred pounds, a 34-C, Banana Republic size zero. I have blue eyes, eyelashes so long I can’t wear sunglasses, lovely skin, and a smile that never stops. I’ve been schooled in classics, theology, philosophy, Spanish, Arabic, ballet, athletics, kinesiology, theater, Karate, and politics. I’ve traveled to 14 counties, broken 5 international track and field records, and taught school in Mexico.

Like what you’re reading? I’ll go on. I’ve got a cute butt, an absurdly long tongue for cocktail party tricks, a set of wheels custom made for me, and a great sense of humor. I’m an hour glass figure, a la Marylyn Monroe, very flexible, and ready to embrace the true meaning of freedom. 

All of this and I’ve never been asked out on a date. 

Which doesn’t mean I don’t any action. Every time I go to the airport I get pulled out of line and patted down by some security guard, their gloved hands running up and down my most intimate areas. The last time I was in Boston one hefty, uniformed individual whispered into my ear “this is my favorite part about my job. I’m so good at it,” as she rubbed her hand up the inside of my leg.

Come fly the “ friendly” skies.

After nearly twenty-one years of living with a disability, I am still constantly amazed by how sexually frustrated young disabled women are. I’ve seen girls with all types of disabilities burst into tears and held them time and again as they sobbed “but I’ll never have a boyfriend.” Often it seems as if perceived asexuality is the greatest disappointment from disability as I watch young women yearn to feel beautiful, desire a man’s touch, wish to have the freedom and confidence to invite him back to their room for the night. Just like all women, we too crave to feel cherished. 

It is particularly difficult to watch idealized images of love, even though my brains knows that these ideals will falter, fall flat on their faces, and cause more heartache that I can ever imagine. I remember coming home after a bridal shower for both of my hall counselors last year and sobbing in the shower “I want to be loved like that. I want to be held like he holds her. I want to be someone’s sexual dream. I want so badly to be given dishtowels by my best friend and be excited about them.”

Perceived asexuality does have a wonderful advantage though. I may cry every time I see Cyrano de Bergerac, but I am able to take the time many girls primp and throw themselves ruthlessly at guys to truly excel at everything I wish to do. And I know I have be given desire that only certain guys are man enough to fill. True, pure, hunger is made to be satisfied.

Unlike many of my disabled peers, I know my inactive romantic life is actually not my fault. Indeed, it’s amazing how guys who do not know about the disability will give me complements without hesitation. (It is important to note I use the term “guys” here, because males this shallow are not men.) On the way back from church today I looked out the car window to see the car full of guys whopping and yelling at my eye contact and wagging their tongues at me. In Switzerland this summer, during a particularly hard evening, I opened my third story window and stood alone watching the sunset on the balcony. Within a few moments a Swiss walked by, stopping to stare at me. He yelled up, first in French, then Italian, then German. After all attempts failed he tried English. “You are the most beautiful vision I have even seen. I wish I had a camera to make your picture. May I came up to see you?” Unaccustomed to such attention I always smile and back away, knowing that mystery is more romantic than exposure. 

I am beautiful. I am sexy. I will be cherished by a man someday. I don’t need to waste my time with false lovers, for I know I have these characteristics, even if no one else suspects it.

On the rare days that I have the balance to walk, I choose to do so barefoot, even if it means that I compromise my stability in the process.  Grant you, those days are exceedingly rare and when they do come, I am like a child again, constantly making discoveries that my peers have forgotten long ago. I was 18 when I first felt the morning dew from the grass on the bottom of my feet. I was walking across a freshly mowed field in the foothills of North Carolina, a friend on each side, when the crystal drops kissed my feet. Each little drop held an entire universe of color and science as it baptized my feet with the fresh water of the new morning haze. 

Two years later, I found myself walking along the southern beaches of the Carolinas, again firmly supported by two more friends. Never before had my feet sank into the sand, been covered by a compound so vast, or felt the entire earth move beneath my feet. I had no sense of the ground I was walking on, what crevasse the sand and splinters would next inhabit my foot, and everything beneath my step was alive. The shells, the critters, everything that the ocean pulled in was full of vibrant life compared to everything I felt on my sole. Walking barefoot connected me to the rest of all that was in existence rather than that same mettle plate that held my feet day in and day out. When I did not walk, what I felt beneath my feet was only the same five inches of steel day after day. 

And so, when I stood to feel the life beneath my feet, the new discoveries were made with two other souls by my side holding me up from the ground. Souls who had felt the life move beneath their feet when they were still stumbling to walk neglected their discoveries now. It was a period of their life which had passed long ago and they had long since forgotten. But now, they were serving me by walking me across such an unknown landscape, not just helping me get my destination, but unknowingly allowing me to explore a new corner of a complex life. To the people walking beside me, it was the place I was trying to get to that was the important service. Any new discoveries I made along the way were side effects.

Often I think when people look at me, they see an opportunity to serve, to have a good deed done for the day. While I do need more help than most, my independence is all the more valuable to me when it comes to the very limited amount of things that I can do.  Many of my friends call it stubborn when I try for 20 minutes to open a can of soda or put on a jacket, but it’s so much more for me than that. Every mundane accomplishment is a declaration that I am here, that my actions are strong and that I am still a force moving and shaping this chaotic place. Reduce me to someone merely to be served and I am worthless except when it comes time for you to feel good about yourself. 

And yet. as an individual of faith, I am bound to appreciate my fellow man and the offering of service he renders. To serve another is to knit me together with my fellow man in an offering to the transcendent truth that is merciful to us all, or so they say from the pulpit. But I, in my frail humanity, am often considered one to be served rather than offer service to another. I sit in the simple wooden pew and even in the silence feel the questions boar inside my skull from the rest of the congregation.  Now I feel connected to all around me only because 10,000 inquisitions bounce around in my head from being trapped inside like a thoughtful superball. Should I? How much pain? How long? What can I do to help? The answer: I’m fine. I got here by myself, didn’t I? 

However, let me challenge you for just a moment in a way that drives the Western world mad: let me serve you. I am not just someone to be served when I need it and when it is convenient to you. I do not only exist at Christmas or when the charity bucket gets hung up for donations outside some Wal-mart chain. Therein lies the true shame of it all… here is the true tragedy of disability, if you will: Are we not all equal? And as equals are we not required to pull our own weight so that not only do you feed me dinner because I need to eat but then, I can hold your head when you’re fighting from going under. My hands still work, my heart is not yet at peace, and my heart yearns to shape this world as much as yours does. I want to shape the ground that my feet walk upon. 

A few weeks ago, we held a foot washing ceremony during the worship service I go to every Thursday night. The service is simple in that Calvinist sort of way that only can come with years of struggling with calloused hands and aching muscles. The feeling and optimism come from hard work and from biting into the impossible while trying to swallow the world whole. The sanctuary is dimly lit by flickering candles reflecting against the whitewashed walls and simple oak pews. Our water basins are not made of glass or silver, just sturdy plastic so that the containers can have a myriad of unexpected uses. The towels we use are old and have seen everything from rainy days and the bottom of muddy boots to hot pans from an oven. The tools are meager, but like so many things in life, the more meager something is, the better it feeds your insides. 

The Christian tradition of foot washing is one of my favorite actions. It’s not a ritual, requirement, or even retribution. It’s just a form of service taken from the ancient days when everything that was in the world (rocky, soft, or just plain disgusting) touched the bottoms of a man’s feet. For me, that’s the tenderest area of body, mainly from years of inexperience.  However, when a host did not wash the feet of his guests, that was a sign not only of dirty floors but of a hard heart, as well. 

I dipped my feet in the warm water and prepared to lift them up by request. I looked at yet another friend who had gotten me up countless mornings, fed me a multitude of meals and caught me from falling both physically and emotionally. Without thinking, I got out of the tub and knelt beside her, every bone of my foot pressing into the wooden floor. I did not worry about splinters or even sores in my feet, I only wanted her to know that she was loved. The warm waters of the bucket felt more soothing on my hands than it did on my feet. Though I felt that every eye in the room was watching me, I did not mind that I was feeling such discomfort. I knew I had not completed the act of washing her feet because I wanted everyone to see what a stellar servant I was; I did not mean to get on the floor for my own comfort, because if it was up to me I would be doing it in a closet. I washed her feet to understand her life, her way of traveling the world, and the places her feet had taken her that mine had not.