Never Walked In High Heels

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. 

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.

Not long ago, I found myself in a pedestrian gridlock that was enough to make any urban dweller revolt. All of the sidewalks, streets, and secret allyways of London’s Trafalgar Square were blocked by formidable officers on horseback to absolutely ensure we were going nowhere. Used to such hoopla, I asked an officer what the occasion was. Turns out, on this perfect Sunday, Bush was going through London on his farewell tour. And so, despite opinions and beliefs, facts and rumors, I found myself doing the popular thing. I too was waiting in patient expectation to see George W. Bush’s limo pass the streets of London.

Truth be told, I can’t dismiss the Bush family as easily as most. There, I said it. You can stop reading whenever you want. But as I grew up in Chicago during the 1990’s, the first president Bush had a profound effect on my life. I remember sitting in front of the television, my six year old knees scraped as always, while Bush Sr. picked up his pen and signed the Americans with Disabilities Act. It was the first time in America that it was illegal to discriminate against me. As I went to school the teachers had to teach me. Doors opened, quite literally, so I could go to university, and now that I am an adult, I should be able to have the same dignities and respect as anyone else in society. It was this law that served as a model for other counties, such as Britain, to restore rights to their own people with disabilities. Asking me to hate the Bush family is like asking a newly freed slave to despise Abraham Lincoln. 

The limo passes in a flurry of camera phone flashes and finger-pointing. For being  such an unpopular president, Bush sure does seem to attract a lot of popularity from people who happen to be in the right place at the right time. I look at my phone and I can’t help but chuckle. It’s The President of the Untied States on my phone… and frankly it looks like any other car with tinted windows. I turn to leave. The barriers are now down and inconvenienced Londoners breathe a collective sigh of relief. 

“Finally. All I was trying to do is get to Charing Cross station,” a woman jokes to me. She says she’s going to visit her grandchildren for the week, and she’s hoping that tonight there’ll be time to bake bread with them. I smile at her, she smiles at me, and there is an instant connection. I say that I’m headed to the same place to catch the train home, hoping for an easy night.

“Oh, isn’t it sweet of them to let you take the train? It must be so nice to hold the rest of us up so you can get onboard.”

I swallow hard. For the rest of the conversation I stare dead ahead answering in one word syllables, resisting the urge to reach up and disable the woman myself to teach her a lesson in empathy. I keep telling myself to breathe and remember that she is older, so soon she’s going to fall, break a hip and learn her lesson. Or maybe she’ll go blind. Or…

I purposely lose her in the crowd. Doing so makes me feel a little more control of my life. I don’t know if I’m aggravated more at the woman or at myself for not saying anything. “Nice?” It’s the law. It’s my right to ride that train, and the fact that I can’t ride the train without giving at least 48 hours notice proves we have a long way to go before we can even talk about being “nice.” Every time the platform manager harasses me because he doesn’t want to get the ramp out, or when I have to ride an extra hour to the end of the line because no one was at my stop to help me get off, I’m reminded that freedom, while granted by law, takes awhile to trickle into actuality. 

It is easy for us to assume that because something changes legally, the problem is completely fixed.  In reality, getting a law in the books is only the first step to evolution. After that, the responsibility rests on the citizen’s shoulders. Oddly enough, it is at this point that society claims the problems as one that can be dismissed because it is remedied. We argue for legislation and for papers to be signed but after Congress is cleared and the legislators leave for home, the reformation of society still is entirely dependent on ordinary people. It is what we do on the subway, while buying jeans, the absent minded comments we make while passing each other on the street which define the rights of the individual more than any statesman would ever dream of.

At home I fix myself an obligatory cup of tea and watch the Thames from my balcony, Canary Warf looking like the land of Oz in the distance. The warmth of my home reminds me that while the outside world can turn hostile within a second, the places where I belong value me for the woman I am and for the things I have accomplished. To them, any slight allowances in time and adaptions are well worth it.

In a culture when special interest groups and campaigns seem to dominate our understanding of value, people confuse the importance of disability rights, putting it on par with the save the Australian ostrich movement. It seems to my friends that issues, such as environmentalism, are somehow more important simply because its actually seen as an issue on CNN. So when I start talking about how it isn’t fair that I can’t get in to a pub, and my friends roll their eyes and tell me to come back when the campaign has a colored ribbon. 

I fight for disability rights by default, not because I have nothing better to do. Actually, I fight for my own rights first, and if that happens to help others behind me, so be it. It would be a lie to say I want to make the world better for all because I know that in paving the road for myself as an artist and businesswoman, I can do more to expand opportunity for others than if I just focused on disability rights. This is why I will never be a lobbyist or activist. I fight for my rights only for my own advancement. It is up to everyone else to take advantage of that progress.

However, the issue of disability rights is one worth plowing a new road for in my mind. It is not a stand alone topic that attempts to rescue a certain group, often at the expense of others. It is a good old battleground in a war that should have never needed to be fought in the first place. Like the Women’s Suffrage movement and Abolition, this is an issue which, in 200 years time, people will look back at and wonder how such a large majority could be so barbaric. 

When I look for equal treatment, I’m not looking for special treatment… as some  have accused me of in the past. I’m not even looking for my dignity as some activists shout about. My dignity can only be given to me by myself. My freedom is mine only because I fight to protect it, not because anybody else chose to give it to me. But when I am looking for is the willingness to improve the world which you will soon inherit. The world needs to be changed not just for me, but for you. Your body will soon break down and fail you and the standards of living you allow for me are the ones you will have to deal with in your aged years. It is only then that you may see the misconceived assumptions of the able-bodied world.

Here’s hoping my friends will catch on before it’s too late for them. 

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. 

“Hello, remember Gandhi? When are folks gonna realize that kicking young people off trains is a bad idea? It can only lead to trouble.”  - Athena Stevens

“Sorry, we can’t get you this one either,” he says to me for the third time in a row. It’s rush hour in London, a time that can only be classified as every man for himself. It’s a phenomenon which I can’t even complain about as, during the hours of seven to ten in the morning, I’m as savage as any of my ablie-bodied peers and nearly twice as fast. The past three years have given me a post doctorate degree in defensive driving. I weave in and out of bodies better than most footballers looking for a breakaway. Morning rush hour leaves no excuse to be late as the best thing you can do is pick up your feet and keep moving, 

Unless you are reliant on public transit. 

“Why not?” I contest back to the rail worker. “Seems to me there’s enough room to get on.”

“No, no. We need to wait for the next train. People like you really shouldn’t be out  and about during this hour anyway.”

There it is. I was wondering when I was going to find the arrogant chink in his seemingly paternal armor. I wasn’t supposed to be going to work with half the city of London. What possible appointment could I have at this time of day which would be of any importance? Why would I have a schedule to keep so tight that I actually spent my own money to buy a more expensive ticket to travel during the peak periods of the day? What could it even matter if I was late for work? 

Transit is a very strange business to be in. The things that can go awry while going from point A to point B is almost infinite once you add the Human Element. The idea is simple enough,  but in the process of trying to get everyone where they want to go, transportation has become the battleground which nearly always precedes the war of social justice. When Rosa Parks refused to give up her seat on a segregated bus, she challenged the whole of the American racial hierarchy. When Gandhi was thrown off a South African train, it caused one man to shift his entire world view, thereby shifting the world. And in the 1970’s the disability rights movement began by people chaining themselves to London busses in order to demand equal access. Clearly, we’re still in the trenches on that one.  

History should have taught us by now, refusal to give people reliable transport is a surefire way to start trouble. 

“Put me on this train now, please,” I slowly say between clinched teeth desperately trying to rail in my temper.   “I need to get to work.” He doesn’t move. The train passes. I am now officially late. 

The movement towards civilization has been founded on the movement of people  getting to where they want to go. Without the rails, roads, the very veins of the city our opportunities are limited to what’s just past our front door. For many, this limitation continues to be unmoved. In a world where we assume that just because there’s a little wheelchair symbol on the map means that everything is accessible, we forget that attitudes often stand more immovable than any concrete barrier. 

“So where do you work sweetie?” He’s trying to get on my good side. I’m now trying to call my boss. 

“I’m a consultant for the transit system here in town.” The truth slipped out so easily that it almost sounded sarcastic. 

“I bet we can get you on the next train.”

Yeah, funny how that works. 

As the next train rolled up he put down the ramp with a smile, and I thanked him by name. The outside began to flash past in an ever increasing cadence. I was on my way and almost on time. I thought about how far this world had to go in learning to accept the frailty of the human condition. It is a place that no motor will take us, save the drive that comes from knowing that all men are made equal;  the ones who have refused to forget that, even while simply commuting, have done a great deal to change the world.