Never Walked In High Heels

Living in London with a wheelchair that can balance on two wheels means that I have a lot of conversations with strangers. I can usually tell from the first question that these strangers are all intelligent in some form or another and extremely curious. I like curious people—it’s one of the reasons why I went into acting—and there really aren’t too many people in London who want to talk to a redheaded woman in an animal print coat riding a wheelchair. Sometimes, however, I don’t want to talk to any of them. Then it doesn’t matter how ingenious you are, I will do everything to avoid you. But the problem with curious people, is that their curiosity means they have no limitations and so they hunt me down and ask me how I am able to make a 400-pound wheelchair balance on two wheels—regardless of the fact that I clearly don’t want to explain.

I was having one of those days when I decided to go into the National Gallery and look at a Turner landscape collection. Then I saw a stranger giving me that I’ve come to recognize as saying that someone is headed over in my direction, so I can prepare for a conservation. I looked back at the painting. Don’t bother me if I’m looking at a Turner! And then he asked the question of how my wheelchair works. I couldn’t ignore it so I answered. He asked me if I was American, followed by what I was doing in London, so I gave him all of the necessary information and in talking to him it became obvious that he was no Englishman either. So I returned the favor, and asked him what he was doing in London. This was his story.

“Freedom.”

I smiled because I knew exactly what he meant. It turns out that he had emigrated from Italy to the UK in order to follow his dreams of being a cellist during the 1940s when people’s rights were being stripped by fascists in Italy as much as one could imagine without the additional concentration camps. He was himself Jewish and recognized England as a place where he could follow his dreams and have an incredible amount of freedom compared to his home nation. Too often, my loved-ones will say that America is the only free country in the world, and while I think on some level this is true, on an individual level I have discovered that you are free wherever you are allowed to chase your dreams. For me this means going to England, as it did for a Jewish cellist half a century ago. It’s not simply political. It means finding the place where you will have to make sacrifices in order to chase your dreams, but where the sacrifices are worth every moment, and you can get to where you want to be.

“We are strangers and yet we are friends. We are both real people.” He said to me before he walked away. In a city where there sometimes seems to be a shortage of real people, it’s hard to imagine that this is the place where I have chosen to chase my dreams, and the fact that he and I are on opposite sides of the life spectrum but still chose the same place means that dreams do come true. Even outside of America. He and I are fighting for the same thing—the freedom to race towards our dreams.

I should have recognized it was a sign when the sermon that morning was on paradigm shifts. The idea of God throwing our world into chaos in order to bring us closer to his visions, echoed in our ears as we decided to go spend the rest of the Sunday in Lake Norman. It wasn’t my first Sunday with the Hillis Family including all ten of their children and incredibly energetic parents. Due to the loss of a biological son a few years ago, the Hillis’ opened up their home to adopt, two children from Russia, and then another one came, and then two more, and then three more, all having their own personalities and problems as well as past histories that could confuse even the most dedicated case workers. What makes them special is that every single member of the family is ready to gather what life throws at them and make the drama the best it can possibly be. They have become a family in the most mature sense of the word.

That Sunday one of us said, “I thought this morning how much I wanted to see a miracle,” and as it turned out one of us would be baptized by the mother, Susan. We spent the day on JetSkis and playing in the water, and enjoying each other as we said goodbye to summer.

Then that night we received the phone call. The parents had returned home with half of the children so that they could go back to school, and I was on my way back to Las Vegas when Christie got the call at 4am, she instantly thought something was wrong. The Hillis’ house in Georgia was being flooded by rain as her mother spoke into the phone. Flood water kept rising and it had hit the first floor of the Hillis’ house and was steadily seeping into the second. The boys of the family all lived downstairs and were the first to wake up when the pressure from the water had built up so that all the windows and doors burst open and water came rushing in. When I got off the phone with Christie telling me the news, all I could think was how could this happen to such good people.

I used to think the life of faith was supposed to be easy. You just held onto the belief that no matter what, all things work together for good. For many, this is the definition of faith. I buy into this, say my prayers at night, and somehow there will be a happy ending. But even if you adopt 8, or 10, or 20 Russian children, it doesn’t mean that you’re covered for any of the disasters that can sideswipe you. “It’s all just stuff,” Christie said. And of course, she was right. It is all. Just. stuff. The difference is when it’s your stuff and it’s what you’ve been dependent on. The Hillis’ have never had a lavish lifestyle, what they have they need is what they have, little more. All of a sudden that “stuff” can seem vital when it is taken away. Then the faithful seem to be permanently living in the Land of the Fucked, where nothing goes the way it should to and you have to be ready for what the rain water brings. However, living in the Land of the Fucked also allows us to call things exactly what they are , so that stuff can be let go of because we need all the power and the ability to cling to the truth rather when we live in a world that teaches us to clutch “stuff” under the guise of calling it security.

In one weekend we saw the many things that water can bring, from healing and recovery, to devastation. When I was little, I found myself clutching to safety at the edge of any pool I went into—even when I had a life jacket wrapped around me. I started to say when I went swimming, but the truth is when you’re clutching at the wall you’re not swimming at all. It’s more of a holding on and not noticing anything else. And in this way we miss what the water brings to us until one day, even after we’ve tried so hard to beat it, the water changes our lives, and we have to—if we haven’t already—learn to swim.

To learn more about the Hillis Family, please visit: http://www.rebuildthehillishouse.webs.com/

Two days later I had managed to scrape myself off the bathroom floor and get some work done, but as soon as my roommate left I collasped into a mess. Finally I took the dress out of my closet and shoved it fiercely into the plastic bag it came in.

I began to think I was completely out of line for asking my friend to dress in formal wear. My judgment waved between being furious and opening the phone to call him back.

“I think I may have my first broken heart,” I told a friend while explaining the situation. She wanted to know who the seventh rejection came from and I told her.

“Well, of course he refused to wear a tuxedo, he’s proper British isn’t he? Look, it’s got nothing to do with you, that’s the first thing you need to get through your head. I promise, it isn’t because you’re disabled or any stupid reason. Well, if you ask me it is a stupid reason but that’s just because he’s English.” My friend who was, of course half French, did her best to make a madwoman see reason. For some of our friends, wearing a tuxedo can be a declaration of class rather than the starting point for an evening out.

In England, the fairy tales require more magic. For many, putting on a tux is an action for men of the upper classes, never something for an average Joe to put on. And to do so, for some, is to be seen as not only attempting to rise above your station, but also commit treason towards the class you came from. I never imagined it was a bold statement for certain friends to even consider going to a black tie affair let alone dress for it. So many farm girls all across America went to prom, even if it meant buying a dress at a Goodwill store. And they were still puffy and pink, the stuff it took to become a princess for one night. Immediately I wondered if little girls played dress up there. Did they get to have tea parties with other princesses, or were the only items in their play boxes indicative of  more practical lifetime occupations?

That night I called my friend Ché. His parents named him after Ché Guevera and his politics became even more proletariat from there. If anyone hated the bourgeoisie uniform of the tuxedo it would be him. I hoped he could make me more sympathetic towards the toiling masses.

“If someone asked you to a black tie event, would you be willing to wear a tux?”

“They’re a little itchy, but sure, of course I would.” This was not the answer I was expecting from a man named Ché.

“You would?”

“It’d be rude not to meet the dress code. Why? Where are we going that we need to get so dressed up for?”

“Would you go with me to-“

“Absolutely,” he said before I could finish the question.

It took a man who loathed the class system and economic inequality to remain unrestricted by it. Seven days later he was waiting for me as I got off the train in the red evening gown, his dark hair pulled back into a ponytail and his tux suiting him perfectly. Putting aside his politics to help me for an evening made him more of a gentleman than I ever dreamed of having. On our way inside I could not help but smile. Sometimes, if you put a black tie on a red commie he can behave with more class than any blue blood.

The preceding is an essay from Athena’s new book The Perfect Sole due out this winter.

Meanwhile my escort options were quickly waning.

With ten days to go I was calling every male between the ages of eighteen and forty five that I knew in between kicking myself for ever getting my hopes up about a date. I don’t know why, but the promises a young woman makes to herself are often the most deadening and unhealthy resolutions ever created. And in those moments of asking every conceivable man I knew out on a date, I promised myself that I would never again be taken in such foolishly romantic ideas of silk gowns and wonderful evenings again. It was obviously not where I belonged.

The problem was not actually me, or so I found. I would call up a friend and explain the situation and he would be eager to go. Then I would mention the dress code and everything would begin to fall apart.

“But don’t worry, the company is so eager for me to go escorted that they are willing to pay for a tuxedo rental.”

“A tux?”

“Yeah, so you get a first class dinner and you won’t have to pay a thing.”

“But I have to wear a tux?”

And thus the conversation turned into him having to check his calendar or him suddenly remembering an appointment. The seventh guy finally was openly resentful about it.

“I’ll go, but I’m wearing a suit. Don’t expect me to show up in a tux.”

“I’m going to be in an evening gown, so you’ll look absurd in a suit.”

“Doesn’t matter, I’m not wearing one of those.”

A few hours after the conversation I called him back up, leaving a firm but nerve wracking voicemail.

“Hi, its me. I’ve been thinking about it and, well, if you don’t want to wear a tux… I think I’d rather go with someone who respects me enough to wear one when it says ‘black tie only.’ I really don’t want to bring the only guy not up to dress code. So I don’t know who I’ll go with but… yeah, thanks for the offer.”

And then went in to my  tiled bathroom and collapsed, heaving until I could no longer recognize the sounds of my own cries.

I couldn’t believe it. Was I so ineligible for an evening out that I couldn’t find a single one of my male friends to eat a dinner with me which was priced above their last paycheck? Was there some sort of price to pay for spending a seemingly free evening with me? Was I just not in anyone’s league? Insecurities about me, my romantic history, and future prospects kept me nailed to the bathroom floor. Worst of all, I had just turned down the only guy willing to go out with me.

The dress hung limply in my closet like a flower bud which had never bloomed. I had chosen something which was a deep red and not at all like the pink frosting I had always found myself envisioning. This I had found in a corset shop in Spitalfields Market. When I stepped out of the dressing room a man who was there with his wife, who said “I don’t know what you are looking for, but that dress is the one.” It was a deep red.

Two days later I had managed to scrape myself off the bathroom floor and get some work done, but as soon as my roommate left I collasped into a mess. Finally I took the dress out of my closet and shoved it fiercely into the plastic bag it came in.

When it comes to attending your first black tie dinner, class warfare shouldn’t be an issue.

Perhaps I should back up… a lot.

In high school I went solo to one dance, and swore I would never do that again. An upper middle class suburban high school had somewhat different ideas of what constituted a formal dance than the typical television portrayal, and inclusiveness was not a favorable trait. And I wasn’t your high school boyfriend type. I didn’t have pompoms or glitter eye shadow. I had on a three piece suit, a leather briefcase, and by junior year I had read cover to cover The Norton Anthology of Literature—both the American and British volumes.

So, needless to say, I was never asked out to any of the school dances. And I was fine with this. Or so I thought. By the end of college, after trading in the lawyer for a teacher and then the teacher for a thespian, I still had not found any time to attend a formal, as they always seemed to fall on the final week of rehearsals before a production. And once again I was satisfied with my time management skills.

The problem is with being a woman in a wheelchair, is that sooner or later those quiet Friday nights begin to add up. And you begin to wonder if the reason why boys don’t come knocking is because there is something, quite literally wrong with you. But, doing my best not to dwell on anything, my life went on, taking me to London.

Within a year working as an independent access consultant in London a client asked me to sit at their table at an awards banquet. The event was to be black tie only. Almost instantly all guards against fairytale nights and big poofy skirts were demolished. Before I could even get the words out to accept the invitation I had visions bathed in pink, satin, lace, and tulle capable of nauseating every sugarplum fairy in existence.

When I noticed the invitation said “plus one,” I searched the little black book for possible candidates. Whoever he was (because I was bringing a date and therefore he had to be male), had to be a good feeder. I didn’t want to worry about anything being spilled on my dress. And so, I found my perfect match, called him up, asked him out, he accepted. Done. Now I could move onto the really important bits, like picking out a dress.

Two weeks before the dinner my date discovers some unexpected good news which causes him to have to cancel.

“Shouldn’t be a problem,” I told him half jokingly. “I’m friends with loads of starving artists. Surely I can find someone who wants a free steak and lobster dinner.” I returned to my black book, left a few messages, and went back to looking for a pair of shoes to fit the ordeal. Given that I never actually had to walk the entire night, my footwear options were limitless.

No man is ever made to live his life as he would wear a hand-me-down pair of shoes. It is not the role of anybody else to break in the seams and canvass of the pair of cross trainers, and then hand them back to you explaining what they are and are not capable of. That is your task, nobody else is permitted to unless you allow it.

What Sue realized and other therapists did not, is that even though I would never be a roller derby queen, there were things to be learned which roller-skating exemplified. Things like flexing one’s hips, finding core strength, regaining a center of gravity, and even the coordination it takes to bring one foot consistently in front of the other, all are skills which a pair of skates can challenge you to master more than being on your own two feet. Like football players taking ballet lessons to improve their game, Sue never expected me to become a great skater. And if I had become one, that point would be moot. What she was interested in is that I learned how to walk to the best of my ability. And if it took a pair of roller skates to learn that, then who was anyone to say that roller skating did not lend itself to a reasonable therapy goal?

Eventually I lost interest in the roller skates. I think I brought in a bike instead. And when I got my permit, Sue and a few other therapists took me out to learn to drive. Which is pretty impressive given that I came to the therapy centre with the expectation of never accomplishing the skills of speech and being able to sit up independently. It is the people who refuse to stop because hope may bring disappointment, refuse to believe that any dream is unreasonable, and strive for something which is deemed useless, who have the richest lives and greatest victories. The people who live life safely, refusing to reach beyond what is in easy grasp, have no claim on the lives of those that do.

After I was halfway through college, I went back to the therapy centre for a visit. Walking down the hall, I saw a small boy grasping desperately at the wall for balance. He was trying to move forward despite being attached to a set of roller skates. At a closer look, I saw they were the adjustable kind which attached to shoes. They bore the initials of the therapy clinic. Some therapist obviously thought they would be a good investment for teaching disabled children. The boy’s own therapist was encouraging him to move away from the wall. In answer to his protests and fears of falling she said “yeah, so what? Not like you haven’t fallen before.” I couldn’t help but smile.

Those who refuse to fall cannot learn to walk. They will look at a pair of brand new roller skates and never try them on. And eventually, they will do everything possible not to let a loved one fly.

The preceding is a narrative essay from Athena’s book The Perfect Sole due out this winter.

Hope is, by definition, something born out of adversity, slim chances, and unquenched desires. We do not hope that our loved ones will come home on time tonight when they’ve been on time every night for the past year. Unless there is a specific reason as to why tonight is different, we merely expect them to be on time. This is not hope. Hope does not come without the considerable risk of disappointment. Despite what any politician, inspirational speaker, or salesman may want you to believe, you cannot offer people hope without running the risk of them facing disappointment; the two will always go hand in hand.

Now there will be many who will respond  to this by claiming that there is a world of difference being giving hope for someone to obtain a reasonable goal and encouraging someone to reach for an unreasonable goal. In the upcoming weeks Sue was challenged with this statement plenty. In addition to roller skating being an unreasonable goal, it was deemed something even worse: not useful. After all. What possible use could I have for roller-skating? Wouldn’t my time be better spent learning to climb stairs or walking on gravel? Shouldn’t I be conquering something which would otherwise prove to be a hindrance in the real world?

This argument suddenly kept popping up more in my life when I decided to become an actor.  Was me being onstage really a reasonable goal? After all “you’re just so intelligent, performing seems like it would be such a waste. Have you thought about being a lawyer instead?”

But the argument of anything being a reasonable or even useful goal depends on the honest answer of a single question: according to who? Like anything else, is the judgment of a single person (or even a group) enough to make that declaration true? Someone may judge a dream unreasonable because they are unwilling to make the sacrifices it would take for it to come true. One man may deem it as a waste of resources simply because qualities such as intelligence, strength, and specific abilities are not his to offer or make use of.  But that doesn’t mean that a goal was ever unreachable. It simply means that that person was unwilling to do what it took to attain it. But one man’s limitations should never be placed on another, self imposed or otherwise.

At the age of four, just before I started working with Sue, my mother sat  in a meeting with my school’s administrators in which she was informed that I would never be encouraged to walk during school. Their justification was that encouraging me to walk was an unreasonable goal. Despite my mother’s protests and evidence to the contrary, none of the administrative experts or physical therapists would concede. Finally a student teacher raised her hand and said that she would give up her lunch hour to teach me skills I would need for walking. She never got to see me walk without the walker that she had to tape my hands to. She never saw me on roller-skates. But something told her those efforts were not wasted.

One wonders what the reaction would be if my mother had  brought in a pair of skates.

I took my first independent steps shortly after I was ten years old. Unlike our apartment, our new house was  mostly uncarpeted, which, for someone who is used to crawling as a major mode of transportation, this small detail constituted a major lifestyle change.  The difference between crawling on high pile carpet and tile for young knees meant that I learned to walk independently very fast to avoid the inevitable pain of pressing your knees into a completely unforgiving surface. And although I was well on my way to learning how to walk by this point, my mother has later admitted to me that she knew that a tile floor would provide me with the additional incentive needed to learn rapidly.

Of course, I’ve never been one to do things by halves, so looking back I’m always a little surprised that people had such a reaction when, nine months later I had saved enough from my allowance to buy a new pair of pink roller skates. The following week I took them to the therapy center and announced to my physical therapist, Sue, that I thought learning to roller skate should be my next therapy goal.

Perhaps this is where I should back up to explain, my version of “walking” at this point, can best be described by that scene where Bambi is attempting to get his feet under him. I wasn’t really walking at this point so much as I had learned to maintain a consistent direction during a controlled fall.

But Sue, the woman who taught me to walk, bought it the idea of roller skating as a therapy goal.

She reached for the roller skates that very afternoon and put them on my feet. Bambi was now trying to maintain a tentative balance while on wheels on ice with a film of motor oil underneath her to make life really interesting. In addition to being on wheels, I was two inches taller than I had ever been. And, having only walked independently for less than a year, I never realized how important having your feet directly underneath you really was.

As soon as we went from the treatment room to the clinic hallway, the questions from other therapists began. “What on earth are you doing? Sue, she’ll never be able to learn to roller skate. That’s not a reasonable therapy goal.”

What is the difference between allowing someone to hope, and setting them up for disappointment? I’ve been challenged with this question often by people who are trying to make me “see reality.” These people then hide behind the statement “I just want to protect you from disappointment.” What they don’t see however, is I’ve been hurt already. A lot. And as anyone who has suffered though agonies can tell you, reality fiercely slaps you in the face before you can see it.

Back in the classroom, Socrates was relentless towards the mind of sixteen year olds.

“Can we ever be untied? Look on a map, America is huge. Alaska, Kansas, New York all in one country. Let’s be reasonable.” Now he was doing his best to push everyone’s buttons.

I’ve been out of college a short while now and already two of my friends have needed to apply for handicap parking placards. Two years ago it was unthinkable, now they are applying for the blue placards which are permanent, rather than the temporary red ones. For someone who has found how we are all alike more interesting than how we are all different, the connection is striking. For most of us, as we age, America will be shrinking. What is different about disability rights from most civil right battles is that nobody will wake up suddenly being a different race, gender, or creed than when they went to bed. Life can change in an instant in that going for a jog one morning may be the last time we ever do it. This may be as simple as a bad knee or as traumatic as a car accident, but everyone’s body will fail him. Moreover the inaccessible America you  permit today is going to be the same one you will inherit tomorrow when your body breaks down. I’m not just advocating for my rights. I’m advocating for yours

But even the politicians, the ones who are supposed to be directly enacting the Constitution, remain blissfully unaware of how small America is on this issue. In between welfare reform and environmentalism, gay marriage debates and school vouchers, when was the last time you heard a story about disability rights on a news station? I can think of only one politician who consistently brings up the issue in her platform. Other than that, I feel like everyone else’s issues get debated in Washington except mine. Even though all men are ultimately feeble, the needs of all men are ignored.

What I learned that day in the classroom, took an additional six years to finally reach its full meaning. Like so many other things in life, you don’t realize what rights are until they are taken away. It’s as simple as someone in the grocery store insisting that I really want skim milk when I’m reaching for the two percent. Most people when they think about disability rights think of assisted care or special services. I don’t need that. I just want to get where I’m going unimpeded by a staircase, someone who thinks they know my limitations, or even an overbearing special service. Don’t give me add on’s until you’ve figured out how to fully give me my unalienable rights. This doesn’t mean I don’t have those rights yet. I still have them, America (or anywhere else I’ve lived) just hasn’t figured out how to respect them. Special care facilities, special education, even special funding is no replacement for freedom. Any revolutionary in American  history could’ve told you that. They could also tell you that sooner or later, that freedom eventually came. Even after living in the real world, I cannot give up hope that I will join them.

“I’m still waiting for an answer.” He looks at what we are all looking at… the clock. Our books are still being clutched to our chests in anticipation. “Miss Stevens, you’ve had your hand up for some time now.”

“Maybe the phrase all men expands as civil rights expands… Uh… It could’ve meant all males with property then but now it means all humans… or-or at least it should.”

“Go on.”

“It just expanded to incorporate more and more people until today, everyone is equal.”

“So the history of America-“

“The history of America is the story of the phrase ‘all men’ expanding.” He looked at me and nodded approval. The bell rang.

That’s what I said one rainy August morning when I was sixteen. It would take me years to learn the weight of what it meant.

The preceding is a narrative from Athena’s book The Perfect Sole due out this winter.

“What  kind of kooks would claim equality as a birthright? I mean the idea’s insane. Can anybody in this classroom, in 2000 give me any absolute proof that the man who wanted to wash my windshield for a buck this morning and Bill Gates have an equal chance in life? Anybody?” The teacher was already passionately walking around in circles and raising his voice. “You can’t do it, just look at the world.”

People who pass me on the street tend to see what I can’t do when really, they don’t know the half of what I can do. The idea that God made all men equal is great in theory, but hard to believe in practice, particularly at first glances of other people’s conditions. We live in a world, I came to find out later, where most people will define you by what your abilities are not, not what they are. Oddly enough, this way of defining humanity is precisely what splinters people so that we question the meaning of “all men.” By categorizing everyone so that “we are all different” there is no longer a solitary unit of mankind. If there was, nobody would question what was meant by “all men” in the first place. Thus we do not allow Jefferson’s ideal to be fully accomplished.

“I’m still waiting for someone to tell me what ‘all men’ means,” he says after a brief tangent about the Civil War. “Did the constitution change when we freed the slaves? Don’t think you are getting out of  here without answering the question. I don’t care if the bell does ring.”

I realize now, that my so called “America” ends with the first unramped sidewalk  I come across, regardless of what the law says. Certain doors, both metaphorically and physically, remain impossible to open and you can recite what lawmakers say until you are blue in the face, it doesn’t mean anything. If America is a place where people are “endowed by their creator to certain unalienable rights,” then you don’t realize how small America actually is when your are sitting in your high school U.S. History class in your wheelchair. You can’t know that, because all the same teachers see you everyday, they know you for you, meaning that there is nothing to prove, and every day you open every door, even if it means asking a janitor, in Spanish, how to unlock it. Then when you get through the graduation line and out into the public you’re shocked by how many variable friction door handles there are which, of course, you can’t hold onto, how many huge cracks there are in public sidewalks from endless cycles of ice freezing and melting, and how many oblivious people there are out there who don’t listen and can’t stand the thought of either themselves or me being independent . Outside of a classroom, American progress rarely goes in a straight line.