Never Walked In High Heels

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

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

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

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

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

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

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

It’s Armistice Day again. It is the time when we all wear red poppies for remembrance and flower sellers on the street corner are doing a respectful duty. The scarlet plastic flowers contrasting against our dark coats are a bold statement for the good that men are capable of in the bleakest times. And these men, wars, and efforts, are worth being revered as well as remembered because these are the people who knew that sometimes a war is worth fighting, in order to protect human dignity.

Sadly, we as a society seem unable to offer these people the same respect in peace time as they did on the battlefield. Indeed, it is a known fact that with war comes wounds, and with those often comes permanent disability. What is often forgotten is that even today, with the onset of disability, basic human rights and dignities are habitually forgotten, looked over, or ignored. It suddenly becomes socially acceptable for a taxi to blow past a man in a wheelchair because the driver cannot be bothered to put the ramp down. Store clerks refuse to acknowledge someone with inarticulate speech because it is easier to talk to her companion. And a family stops trying to bathe the last living man from the World War II generation because his missing limb combined with his age related conditions makes showering extremely difficult.

Veterans are the people who were willing to risk life and limb to protect our safety and way of life at home. What they did not realize they were risking, was what is taken away as a person with any disability… their dignity.

With disability rights legislation several years old, it would be easy to assume that such discrimination and humiliation no longer exists or, at the very least, is on its way out. But in fact, the issue is a civil rights battle with extremely uncharted waters. The Disability Rights Commission recently revealed that a shocking number of organizations failed to give a disability equality scheme on the required date. Research shows that over forty percent of disabled people are deemed “economically inactive.” Despite all possible legislation, the barriers which were an issue for disabled people fifteen years ago have not been erased but rather transformed. And for the man who gave up his pristine spine because he believed an ideal was worth that risk to protect that notion, why can’t the country he was willing to enlist for now see him as a man who is as deserving to be able to get into any building as he is.

If this sounds absurd then there is only one word I can say in response… good. It is absurd that anyone is one faulty stoplight away from becoming a second-class citizen. Moreover, the fact that our culture emphasizes perfection and convenience symbolizes our refusal to acknowledge the frailty of the entire human condition. If the Armed Forces can see this need for the protection of humanity, why is it those at home refuse to recognize the same need for dignity for injured vets.

As a disabled woman, I recognize that laws and legislation have their place in forcing social change. But, it is people who make the laws, and it is people who make changes, or impede them. All of the laws and constitutions amount to good intentions on the part of lawmaker, but the conditions for disabled persons remain unchanged in daily life. And such changes will not be until changes in perception occur at an individual level. It is indeed inappropriate for anyone to excuse his ignorant behavior by explaining “I have yet to receive training on how to deal with disabled people.” Moreover, it is wrong. To use such a feeble defense is to ultimately give permission to someone else to treat you in the same manner when you are old and have unsure footing. More than any other civil rights battle, this issue is the one where, given time, you are sure to reap the seeds you sow.

Of course it is not only veterans who are entitled to these rights, but for them the common condition of the disabled person should strike you as the most shameful. These men and women became disabled by protecting you, your way of life and your home, because they thought your freedoms were worth pain, fear, and even a lifetime of inconvenience. Why can we not take the same challenge on our local high streets? What should be our selfless heroes are currently force to drink from the pungent cup of dependency feeling unwelcome, foreign, and a burden. They have been forced into the position, like all disabled people, of a refugee with no homeland even among the nation they fought to protect.

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.

Jefferson’s promise was scrawled across the board in half dead dry erase marker. Circled were the words all men. Our first day back for junior year of high school, the man in a sports coat at the front wasted no time in making us think. He demanded to know,  who was classified under the term “all men?” Did that include women, minorities, every age, creed? What about the fact that when these men wrote the Constitution, they clearly didn’t mean slaves, or women, or for that matter any white male who didn’t have the good fortune to own land? I looked out of the window at the rain pelting down, as it did every August to discourage us from even wanting to be outside. Summer was, without a doubt, over.

I didn’t know it then, but that was the first time I realized that I was entitled to certain rights, even if society refused to grant them.

Speed ahead six years and I’m in the so called “real world”. And I have discovered that certain bus drivers refuse to let me on their buses, in public there is a very vocal, albeit small, amount of people who don’t think I’m educated enough to go shopping on my own, and I am constantly plagued by experts telling me that they know more about my life than I do. A concerned teacher is continuously calling me and insisting, not suggesting, that I move out of my newly unpacked flat on the fourteenth floor of a high rise I love and into one that’s on the ground floor for “health and safety reasons.” When I try to tell her that I couldn’t find a ground floor flat which suited my needs, she told me I “don’t know how to go about looking properly.”

At twenty three, I’m wondering how to go about declaring my independence from the people out there who can’t stand the thought of me being independent.

Being a disabled woman these day is like living in your own private American Revolution without the petticoats and bayonets. It means starting from square one and having to convince every person you meet that you are, indeed intelligent, capable of making your own decisions, and deserving of being listened to. It means finding subtle ways to display your capacities. There are numerous daily examples of this. Calling a waitress by their name on the tag alludes to the fact you can read. You bring up current events and dare to debate where disagreement is uncommon (citing your sources of course). And if you can see from the onset that a person is going to be over bearing, you avoid them at all possible costs, even at the expense of being slightly aloof.

Not that I knew any of this my first day of junior year. Sitting, listening to the bald man at the front, I thought the idea that God made all men equal was just a given to Americans, excluding the bigoted idiots of course. We had the Civil Rights movement, women’s rights marches, and every amended law in between so that America was the land of opportunity for all people. I never thought that I would be one of the ones still having to fight for Jefferson’s promise to be fulfilled.

I’m in Central London trying to get the 188 home. A driver pulls up to the stop looks at me and insists that London buses don’t have wheelchair ramps. Now in a lot of ways, I can’t say I really blame him for being a fool, just like I can’t be blamed for being born with a disability. He doesn’t know that I have lived in London for years. He doesn’t know that I’ve used 3 buses today, all of which had wheelchair ramps. He probably doesn’t even know that one entire side of his double-decker bus is devoted to a full color ad declaring all buses in London to now be wheelchair accessible. And I’m assuming that he has no idea that I work for Transport for London and I just met his supervisor last week. All he knows is that he is one hundred percent right and I have a disability, which makes me automatically one hundred percent wrong.

Like I said, people shouldn’t blamed for how they are naturally.

Except it is this exact excuse which keeps London miserably inaccessible to wheelchair users and woefully under prepared for the Olympics / Paralympics in 2012. Yes, the London Underground was started in 1863. Yes, London is a city where things are so old that every piece of construction could qualify for a blue historical plaque. Yes, the city is hard for anyone to get around in. None of this justifies the fact that we are now five years after Britain passed the Disability Discrimination Act and there is still not a single reliable form of transportation in London for disabled people to use. As a transportation advisor, I’ve heard public officials try to justify these conditions over and over. And you know what, after all this time and all the warning, after America passed its disability legislature a full fifteen years before Britain passed it, there is still no good way for person’s who have anything less than a fully functioning body to get around in London.

An athlete in the Paralympics stands to be insulted by the ground staff at any London airport. They would be appalled to learn just how many taxi drivers don’t know how to use their own ramps, and how many bus drivers deny that ramps even exist. And, my guess is, after a day or so, they would consider themselves lucky to even get on a train with the level of resentment I’ve seen from most station staff. And the London Underground has a goal of making thirty three percent of all stations on the system accessible by 2013… that’s it, just one third. These are the situations I see in London on a daily basis. In one of the world’s most diverse cities, access is far from being even “manageable.”

When determining nation wide access, the concrete obstacles are often easiest to change. The mental blocks that people throw up are always inhibit equality more than issues of bricks and mortar. Now my worry is that people are falling for ‘good enough,’ and the idea that London was never made to be accessible. Maybe if you have the luxury of taking this attitude London’s accessibility today seems impressive. But to those of us who are dependent on accessible transit, these conditions are paltry to say the least.

People of London you have just under three years to inform, change, and build. The first thing you must do is stop hiding behind your “nature” however justifiable of an excuse it may provide. Since when has something right ever been easy? I don’t think with this little time left Londoners can accomplish the necessary adjustments to make this city wheelchair friendly. Prove me wrong.

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.