Never Walked In High Heels

Apparently, I’m a fire hazard.

              I was not made aware of this until I was rejected from an internship last week. The theatre I was looking to work at is up three flights of stairs above a local pub. I frequent the theatre all the time, climbing up the staircases and making my way into the theatre all the time, occasionally putting a little extra weight in my escort’s arm. I was aware of the stairs when I chose to apply for the position. I was equally aware that I could navigate the stairs by myself safely and effectively. The stairs were a non issue for me. It should have been likewise for the theatre company.

              But then again who am I to say what I am capable of?

I never asked for a reason as to why I didn’t get the position. The company willfully offered it on their own in an email. “Although we understand the nature of your disability allows you to climb stairs, we are concerned that in the event of a fire, you would impede safety for yourself and others in the building.” And that was the end of their reasoning.

        What’s most troubling about this situation is that it occurs at least three times per year. Because a building is not accessible, the potential employer hides behind health and safety law as a means of negating any form of disability discrimination law. To be able to escape the compensatory obligations of one law by hiding behind another law represents a failure on the part of lawmakers to form a cohesive code of conduct. Worse still, it prevents society from ever effectively progressing. During the 1950’s in America we found ourselves equally able to escape the law via other laws. We called this heinous situation the Jim Crow laws and they are looked upon now as a disgraceful barrier towards civil rights.

        What is, perhaps, the most disturbing about being called  an occupational fire hazard is that it takes values such as choice and independence out of my hands. No longer am I able to decide for myself when I am able to safely walk up and down a flight of stairs. Furthermore, achieving the goal of being able to do so is no longer enough. Rather, it is up to an outside source who knows very little about me and my condition, to decide what I am capable of. Outside sources, governing experts and pragmatic cautions overstepping their boundaries often result in putting more shackles on the individual, not safety  features.

        Assuming of course that the only reason I didn’t get the position was because I would prove to be a fire hazard in the workplace, I appreciate the theatre’s desire to keep me safe. But really, that decision should be my call. I know my capabilities and limitations. I weighed all those considerations before I applied for the job and they are not their choices to make. Oddly enough, if I prove to be such a fire hazard, I’m surprised they didn’t saying anything about me going up three flights of stairs to pay them money for a ticket. I guess occupational hazards only occur when the money flows in a certain direction. 

              When I finally sat down to clear through my emails this morning, I was greeted by a common enough occurrence. It was a response from a complaint I filed months ago.

              “Dear Ms. Stevens,

              We were very saddened to hear about your expirences with our company during X concerning the matter of Y. Let me assure you that we pride ourselves at Z on our customer service.  This matter will receive a full investigation.  However, let us remind you that our policy for customers that need special assistance is that we require 48 hours notice in order to give you our best service.  Please keep this in mind when making further arrangements.”

              The above is the excuse of the British across the island.  They are more than happy to give a disabled person full service as long as the customer gives them forty-eight hours notice that they will require their services.  What kind of person can plan their life so far ahead that they will be able to determine forty-eight hours in advance when they are going to need to run out to the store and get an emergency carton of milk because they’re making a cake?  Public transportation systems such as Southeastern Railway live and die by the excuse that if I don’t let them know when I need to use their trains two days in advance, they aren’t required to get out a ramp and help me onto the train car. 

              The thing is, even if someone does call forty-eight hours in advance, half the time the request doesn’t get to the appropriate personnel.  It’s like the special assistance line of so many companies are just for show and don’t actually connect to the main office.  My suspicions are even further encouraged when I am told that I need to dial a different number to reach the special assistance line, and that the head office cannot automatically transfer me to the correct extension. In fact, most of the time, the two offices aren’t even in the same town. 

              To require forty-eight hours advanced notice is not equal access. End of story. Don’t fool yourself. Don’t console yourself by believing a lie. Nobody else has to make reservations to use a bus two full days before actually stepping onto it. In fact, after a quick poll amongst my university colleagues, I found that none of them even had the ability to consistently plan that far ahead. And many of those friends study at Ivy Leagues now.

              The bit about this whole situation which I find most disturbing is the abject arrogance that the forty-eight hour rule fosters. By saying that I can only make plans forty-eight hours in advance, do you know how many opportunities you’re expecting me to forego? It means no spontaneous dates, no sudden trips out to the movies, and no going into town at a moments notice to see an upset friend. Emergency meetings at work or sudden business trips are now out of the question, thus jeopardizing my job. The forty-eight hour rule is invasive, suggesting that I could never have an appointment of any importance which required unexpected travel. Above all, I find this suggestion not only insulting, but simply erroneous as well.

              I’ll close by addressing those whom the forty-eight hour rule directly affects. Do not be fooled. Do not stand for the reasoning that any advanced notice required for special assistance counts as equal access. If able bodied people can just show up and fully use a company’s services, you should be able to as well. Do not allow the fact that they are understaffed as a sufficient reason as to why they need forty-eight hours advanced notice. If a restaurant is understaffed do they turn away people who haven’t made a reservation? The fact that they are understaffed is their problem, not yours. Do not allow them to throw the weight of poor business planning onto you, their paying customer.

              As much as possible, refuse to comply with the forty-eight hour rule. The only thing that allows companies to continue with this absurd and degrading practice is your submission to it. You can refuse to give it to them. You can demand to travel as freely as anyone else. You must point out this absurd and insulting presumption in order to put and end to it. The forty-eight hour excuse is poor logic at best. And, like everything else in life, falling for a fallacy can do as much damage as perpetuating it.

 

Last week’s death of Eunice Kennedy Shriver left the country mourning a wonderful woman. I was told about the loss in an email from a friend who then followed the news by saying “What an amazing woman. You will be just as inspirational, if not more, to millions some day, as well.” I know what she was trying to say. I love her for the encouragement she meant to send me. I just couldn’t help but be very frustrated by it.

Eunice Kennedy Shriver boldly started the Special Olympics during a time when there were no such opportunities for persons with conditions such as Downs Syndrome and Autism. This should be praised. Somehow, in the American Public’s mind, the mentally disabled population got transformed into the idea that a Special Olympic athlete could be anyone with any disability, be it physical or mental.

For much of my teenage years I was training as a Paralympic hopeful. The difference between the level of competition between the two is striking. Whereas the Special Olympics takes the attitude that “everyone here is a winner,” most people will come home from the Paralympics without an award. In the latter the competition is fierce, frightening, and very real. So, growing up training on the Great Lakes Navy Base in the middle of January, if a well meaning teacher told the class I was getting ready to participate in the Special Olympics the result was a tornado.

The confusion between the Special Olympics and the Paralympics disturbs me on two levels.  The first is that the latter seems to lack the media machine which the former has. (Or maybe it’s just the fact that the Special Olympics is blessed enough to have the name Kennedy behind it? Either way…) Most Americans are still clueless about what the Paralympics are. The games still seem to stand in the shadow of the Special Olympics. The fact that the confusion still exists is distressing to every Paralympic athlete I have ever known. It would be like telling Tiger Woods that he had to compete in the Pan-African Games when he isn’t African in the first place.

I also feel that the prominence of the Special Olympics has served to create the association in people’s minds that all disabilities are mental disabilities.  I find this consistent fallacy enraging and have done so ever since I was very small. This presumption is, in essence, the sort of mass funneling and insistent misclassification of all persons with disabilities. After being wrongfully shuffled off to special education classrooms and insults from strangers who assume that they know what’s better for me than I do, the association makes me more than a little on edge.

The work of Eunice Kennedy Shriver was brilliantly admirable. I just regret that it has seemed to cause so much miscommunication. For all the good that was done by her efforts, it created a very frustrating response in my own life. By assuming that all persons with disabilities fit into one specific category or could be served by one specific charity, those who thought they knew about the Special Olympics ignored the wealth of diversity and gifts that were right in front of them. Which is, I think, just the opposite of what Eunice Kennedy Shriver intended to do.

I’m disabled, I live in a socialist country, and I live among those very  strange people called artists. My monthly healthcare premium is exorbitantly high due to a preexisting condition. If anyone should be pro universal health care it should be me.

 

Obama’s current push towards free health care fills me with dread and little else.

 

Now there are some healthcare practices which everybody should have for free. And if there ever could be such a thing as free universal health care the world would doubtless be a much better place. But on this planet, the terms “free” and “universal” are very often mutually exclusive.  

 

If someone could just answer a few questions that I have, I would feel much better. The first is: in a government hospital, who do you sue when malpractice occurs?  I only know to ask this question because I have two childhood friends who became disabled from blatant medical malpractice in an army hospital. The problem, of course, comes in when you’re looking for a malpractice lawyer willing to try and sue the US government. And even if you are fortunate enough to fine the one self sacrificing attorney willing to jeopardize his career to prosecute his country’s government, what makes anyone think that the courts will be imperial? In a world where politicians think they are also doctors, who heals the justice system?

 

People have often reminded me when I bring up this question that I am ‘focusing on the exceptional situation, and the exceptional situation will always be the exception  not the rule.’ Maybe because I consider myself to be an exceptional person, I find this concern valid. Problem is, I don’t know anyone who isn’t “exceptional.”

 

This ‘exceptional argument’ leads me directly into my second question: when government starts making medical care decisions, who is going to keep politics out of the operating room?

 

Any healthcare system is going to be working with the problem of limited resources and limitless ailments. Any medical professional that engages in the battle  for health is admirably fighting a loosing  and highly inefficient war.  Government, on the other hand, is inevitably about pragmatism and finding the best answers for the greatest numbers of people. Everyone forgets that ‘the greatest good for the greatest number’ focuses on being efficient and that such smooth running bureaucracies cannot  leave room for exceptional people.

 

And so, inevitably, when you add politics and government to medicine, everything becomes about cost and value. Limited resources, such as beds, will be  dived up according to which life needs to be saved for the greater good and which ones will be a drain on society.

 

In America’s national healthcare debate, no one is bringing up that there was a society which tried universal healthcare back in the 1930’s. It was Germany and it lead directly to  the Holocaust via Action T4. For those out there who know their history and still think I am leading to an exceptional leap of logic, let me ask: do you really think that Nazi leaders were all that different  from us? Are we not, as humans, made from the same stuff?

 

I really don’t have a problem with universal heath care in America as  long as someone could address these issues rather than repeating an ideal. But any attempts to define the limits and concerns about the system are met with harsh accusations of conspiracy theory. These are logical questions  not being addressed, which makes me wonder: what  else will be ignored in the name of pragatism? 

Sometimes I feel like going through the streets of London is like being a high school quarterback. Of course, that experience is not one that is unique on the field. Dodging individuals trying to make out in the middle of the pathway or young mothers suddenly stopping to grab their children by the hand before they totter away can be equally as dangerous as trying to beat the clock for that last-minute touchdown.

London is considered by many to be the most civilized and, oddly enough, the most advanced city in the world. And, looking at the city as a whole on a good day, this is largely true. You can top up your cell phone at any ATM, the trains run on time (as long as you fit into the ideal London body), you can go through your day relatively smoothly with your iPod in your ears and your purse in your hand, conducting business on the go, dropping into Fleet Street when necessary, and jumping on the train just before the door closes to make the most of time. **

 

Oddly enough, with all this advancement and adaptation that is supposed to make life go as smooth as the silk of a new White House/Black Market dress, we’ve lost something. As human beings in London, we have lost the entire skill of spatial awareness. The irony is, of course, Westerners, particularly British Westerners, in comparison to most cultures, feel the necessity of a relatively large amount of personal space. With this notion, one would assume, comes the ability to remain extremely well placed in the environment. Not so.

 

It would be easy for me to say that American tourists are the worst. And they are pretty bad – don’t get me wrong. As an American, myself, I often groan at the middle-aged woman in khaki shorts with her fanny pack with her flat drawl that can only come from Minnesota. She is in London to experience culture, and as such, she’s doing her best to herd her children like a flock of geese. In doing so, of course, she is completely oblivious to those of us who still have to work on a 9 to 5 job while she is on vacation. 

 

But it does not end with the tourists. It doesn’t end with the individuals trying to get that perfect shot of Big Ben when they might just as easily hop into a local newspaper agent and get one ten times better. It doesn’t stop with Regent’s Park where the young people make out freely. It doesn’t even stop in Covent Garden where the mixture of bipeds and motorists proves to be so deadly that no law can dare define the area. No, it doesn’t stop there. Londoners will take their half out of the middle as much as Americans. I stop in awkward spots as much, if not more than the young couple across the street wanting to show off their make-out skills. And sometimes, just sometimes, the fact that millions of us are trying to go in completely opposite directions backfires in a way that can only be described as inner-London traffic. 

 

Getting around in London should really be the new Olympic sport for 2012. It can be called “urban slalom,” and you lose points for every biker you hit, every time you disrupt the flow, and maybe even gain a few points for every time you dodge out in front of an oncoming car, knowing full well that you have plenty of time and ample speed to be across by the time he reaches the crosswalk. The British, of course, would have the home court advantage and make sure that even a New Yorker would get a run for his money. I might just be the champion as I dodge and ram, predicting an entire sidewalks’ move and how to avoid a lawsuit while going at top speeds with a 500 pound electric wheelchair. It’s as much art and skill as it is athletics and critical thinking, and I challenge anyone who thinks they can master the London sidewalks to do it in an electric wheelchair.

 

Today I found myself in Cambridge Circus, one of my most dreaded areas where Charing Cross meets Tottenham Court Road in an utter mess of confusion and terrible planning. Getting through the crosswalk of Cambridge Circus proves to be the most annoying endeavor in the entire city as buses tend to enjoy stopping for the light directly over the crosswalk, thereby blocking the wheelchair ramp to cross. Sunglasses on, my iPod in my ears to ensure that nothing would annoy me and I could have a completely private walk in a city of millions, I waited for the stoplight to turn and the crosswalk not to be blocked. Finally an African woman took my hand just as the light was about to change back to “don’t walk.” 

 

“Come on, honey. We’re going.”

 

And with that, she held her hand in front of the oncoming taxi to make sure they would continue to stay still even after the light had changed so I could get across with a clear shot. 

 

Then again, there are some times where you need a city full of strangers just to get by. 

It’s three AM on a Saturday morning in London. The light of the outside metropolis shines into my flat like some surrogate moon unsuccessfully trying to lull me into a slumber. And even though I have shut the curtains, turned the other direction, and taken a sleeping pill, sleep is nowhere to be found.
Most people in my situation have been more than acquainted with the night. A Chicago native now calling Las Vegas home and London my workplace, I am currently living as a nocturnal creature to say the least. Add to that the fact that the stage is my office and my networking consists after show drinks with actors and I guess it shouldn’t be a surprise I’m up at this hour. After all, I just came back from a show tonight called Bent.

Bent was first preformed in 1979 and latter turned into a movie in 1997. Max a promiscuous gay man is taken to a Nazi concentration camp with his partner Rudy. While Rudy is beaten to death on the train, Max quickly discovers that he will be treated slightly better by denying the fact that he is gay and convinces the Nazi officers that he is Jewish. When it was first produced, Bent helped paved the way for historical research on the horrific treatment of homosexuals in the holocaust. 

Small wonder I can’t sleep.

Many people forget that before the Nazis went after the Jews, they rounded up others, namely the homosexuals and the disabled. This group was how Hitler perfected his methods of mechanically, often by trial and error. Overall, these deaths were the slowest, most gruesome, and least humane out of any during the regime. Largely forgotten about in history books, it is yet another example of how people can’t stand what they refuse to understand. 

As a disabled woman I have learned that there are two things that most humans want to be absolutely clear on: physical ability and sexuality.  Yes, there are other factors as well, but nothing globally labels you as second-class status faster than these two issues. Even in a world so hell bent on making things easy, painless, and accessible, few dignities are granted to those of us who have no homeland to begin with. There is no country of queers anymore than there is a kingdom of cripples. Those of us who were made to challenge categories and classifications are constant wayfarers. Which is why, I suppose, I have always felt a tremendous kinship with many gay men. Many of them, like me, refuse to apologize for their non-conformity. It would be easy to say we camp it up, make differences sexy and glamorous but that would be simplifying a very difficult struggle which continues today as much as it ever has. 

Throughout history it has been those that weren’t privileged which have reshaped the world. Much of American history has been the redefining of the phrase “all men are created equal” to include what those in power originally hoped to exclude.  The days that homosexuality was a social taboo exactly what was allowed the Nazis to take citizens into the concentration camps. And so, those of us who have public battles at the very least ensure that such silence does not happen again. Better to be in the middle of controversy than taken away in silence. At least with the commotion we force the world to slowly propel itself forward. 

It is a little later and the black sky has grown silver. Even the light outside of my window has now gone off. But I still cannot sleep.  This is pointless. I get out of bed and put feet on the ground. I walk to my front door and check the lock before I go to the couch. Still no sleep. 

I open the newspaper to an article about fetal testing to avoid possible ‘’problems’’ as a child. As always, there is much discussion as to what these ‘’problems’’ are. Where do we draw the line when it comes to avoiding problems? Genetic defects? Disability? Race? Homosexuality? Sound familiar?

My phone rings and I jump from the start. It’s from a mate across the city calling to tell me about his date with his new boyfriend. Neither of us were expecting me to be up at this hour. He talks and I listen to the sound of his deep voice, feeling instantly relaxed. Even though he takes longer than I do to get ready to go out, tonight I am thankful for his confidence, something that I often miss from straight men. Sometimes, I’m in awe of his masculinity. He invites himself over to make an early morning cup of tea. As soon as I hang up the phone I look out my window, the sky is bright red. 

We are everywhere, the others. We are the ones who turn the wheel of history, ensuring that no one is comfortable until everyone has the same dignities given to them. Progress is not made by the actions of those who are sitting in their leather armchairs, it is made by those of us who fight for things that never should have to be a fight in the first place. We have no homeland, but the strength we have ensures that things will change and we will gain the rights that should be ours. Until then, I am reminded of what a more contemporary gay playwright says what an ideal world ought to be. “Everyone in Balenciaga gowns with red corsages, and big dance palaces full of music and lights and racial impurity and gender confusion… Race, taste and history finally overcome.”

Good luck in your own fight to make that happen.

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. 

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.

No doubt about it, Susan Boyle’s singing performance last week was impeccable. It was one of those acts that can only come from years of calloused hands, broken dreams, the refusal to believe you’re above cleaning toilets, and an incredible fire, which will not let you back down in the face of rejection. And, she showed her talent successfully with one of the most overdone songs in musical theatre. Young singers mostly lack the depth sing honestly, without “performing”, and drama school students are often too idealistic in what the profession “ought to be” to even bother trying to be that open. I know those looks of dread from the judges; I have seen them in auditions and in drama school. The refusal of the teachers to admit that one is talented - the insistence that she be handed a tambourine when she can compose a concerto - is exactly why I dropped out of training. Pre-judging is the standard of my industry. 

In the aftermath of the shock, Youtube, blogs, and chatrooms have lit up talking about her performance. “We were wrong,” they say. “She is amazing”… The praise goes on in the type of circular talks, found only in our modern cyber communications. And then I saw a post on a disability-related message board which disturbed me. The title was “Susan Boyle: is she one of us?” It then explained the numerous ways that Ms. Boyle could be seen as disabled, how she was affected by prejudice, and how this triumph was a call to arms for disability arts. By the end of the post, I marveled that the singer could even get out bed in the morning, she sounded so deformed. Then came the torrent of replies and threads: “yes she is disabled,” “no she’s not disabled enough,” “I’m more disabled than she is, and I can sing better, why wasn’t I on?” Again, I am reminded how much I am disturbed to see people choose to crawl on their bellies when they can still remain upright with some dignity. 

Here’s a thought: She is one of us. She’s human. 

What this situation highlights is everyone else’s discrimination that occurred after she opened her mouth to sing the first note. In my mind this hindsight discrimination is even worse than the discrimination which occurred before she sang. She is qualified to hold her own among the best, yet the people who posted such responses choose to see her only in terms of what she is not, rather than what she is. In addition to such practice of logic being bad scholarship, it flies in the face of equality and liberty.  You cannot be a mainstream success by focusing on what you cannot do. This is why “disability art” will forever be on life support from the government. It is not the conditions into which you were born that define who you are. In fact, they don’t even make you interesting. Instead, your actions make you who you are. Ms. Boyle could have captured disability culture if she said, “Oh well, this is the best I’ll be. Let me define myself as disabled and sell a few records off the sympathy of others.” She could have compromised her vision and had it much easier. But she didn’t.

She captured the world instead.