Never Walked In High Heels

By: Guest Written Karl Bastian

Pastor Karl is a children’s ministry worker, long time mentor, and self proclaimed “Kidologist.” Here is a story he recently shared with us on his passing of his grandmother.

One of my “Kidologist Secrets” of relating to kids is to have fun games or “inside jokes” with the kids who I love. It makes them feel special – and let’s them know they are more than just another kid to me. They are unique. They are one of my favorites. I’ve always had a running joke that I was my Grammy’s favorite of her nine grandchildren. Of course, I assumed every grandchild believed that! But it was a theory I loved to humorously defend. In fact, at my grammy’s wake last week, in one of the photo albums featuring full sized photos of her grandkids, when I discovered I was on page one, I proudly declared, “See!? I was her favorite!” and was greeted with groans and rolled eyes.

Imagine my surprise when during the memorial service my father read a note written by my Grammy where she wrote, “To set the matter straight as to my favorite grandchild, not withstanding Karl’s claims to whit – I loved all my grandchildren the same.” Everybody laughed. I had no idea my claimed to favoritehood had gained Grammy’s attention to the point she decided to set the record the straight in her service! It was all in good spirit, and the teasing I got afterward was well deserved!

But there was a reason I felt extra special I can now reveal that I shared during the service that began some thirty years ago, and that applied to children’s ministry and what I mentioned as I began…  the power of secret game that makes a child feel extra special, even for thirty years!

When I was ten years old I saved up my money and bought my own ticket to fly from California to Indiana to spend a summer living with my grand parents. (I did this several times actually.) During the first visit they set up a room for me in the basement that became my home-away-from-home. And I loved these stays with Grammy and Grandpa!

I went to Cubs games with Grampa and learned to sew from Grammy. (That Garfield puppet was the beginnings of making puppet costumes, though Grampa didn’t really approve of that.) I went downtown Chicago on the train with Grammy often and in the evenings watched Columbo and played Rummy – a card game. However, one of my ways of entertaining myself was to toss tennis balls at the stairs in the basement like a pitch back and one time I left them on the stairs and later, Grammy gave me a very gentle scolding not to leave them on the stairs lest she step on one and fall down the stairs. But the next day, I accidentally left all four on tennis balls on the stairs again. Instead of just scolding me, she instead humorously reminded me by saying that she thought my tennis balls were out to get her as they looked like they were coming to get her, because they were higher up the stairs this time, each on a separate stair, and I’d better lock them up, because obviously, I couldn’t have left them there, since she told me yesterday to put them away after I played with them. I played along and said I had put them away and that they must be alive. (I said it in a way that she knew I wasn’t lying, I was playing along.)

The next day, to keep the joke going, after I played with the four tennis balls, I remembered the kind way she had reminded me, but instead of putting them away, I put them in the kitchen, at the top of the stairs, four in a row, across the kitchen, as though they were “alive” and heading toward her room. Instead of her making a joke about it, she simply moved them later, placing them four in row in the basement heading toward my room.

This began an unspoken joke, that lasted thirty years. All that summer, the tennis balls continued to be placed, when the other wasn’t around, four in row closer and closer to the others room, until they were in each other’s bed. Then in our clothes, and then finally just being hidden in places we were sure to find. When I finally flew home, I found the tennis balls packed in my luggage. Grammy assumed the game was over. Little did she know!

When I returned the next summer, the tennis balls returned with me! Any time I came to visit as a young college man, a tennis ball was hidden in her home. I once lived with her for a summer in college and the tennis ball war was resumed though we never spoke a word of it! When she came to visit me, as a young married man, soon after, I would find a tennis ball somewhere in my house. Even as she lived in different states around the country, and me too, the tennis ball war continued, often with years between the secret placement, though over the years, it had at some point gone from the original four to just one strategically placed tennis ball. Many times we simply had to just buy a new one. It didn’t matter. It was more about leaving a tennis ball behind. It was our way of saying, “I love you, you’re special.” It was Grammy’s way of saying to me, “You’re still that little playful boy to me, and you always will be.”

I’ll look at tennis balls and cry sometimes now and people will think I’m nuts. But you will understand. A silly yellow ball holds a lot of love for me. All because my Grammy decided to be playful with a child, and then just decided never to stop. And people wonder why I thought I was her favorite. I’m O.K. with all her grand kids thinking they were her favorite. They all were, in different ways.

A few weeks ago I witnessed my friend marry I guy I don’t particularly like. It’s not that he’s a bad person, but there are several red flags in their relationship already which make me very uncomfortable and I recognize these signs by failures in my own rocky friendships. It’s one of those situations where someone is so passive aggressive that it is hard to point to anything they are doing particularly wrong, but nonetheless  there are always stressful situations being handled very poorly.

When I last saw her before the wedding I tried everything I could possibly think of to understand what exactly she saw in this young man, and as a hidden agenda, I tried everything possible to dissuade her from marriage without saying outrightly “I don’t like the guy.” I was always hoping that by my questions, she would begin to question herself.  But the answers she gave me also satisfied her and so I returned home feeling frustrated that she was so convinced she was right.

I’ve reached a point in my life where I’m at an age where I have started to see my friends make mistakes. Huge mistakes. And I’m also at a point in my life where I am, perhaps for the first time, old enough to realize there is nothing I can do about those mistakes that they so readily endure. I can ramble all I want about my opinions but at the end of the day, many of my friends willingly choose not to listen at all and thus I have often learned it is best to say nothing and not ruin the friendship which might someday become crucial if my friends are ever unfortunate enough to fall into the mishaps that I unwillingly foresee. Often there is little I can do but sit and wait.

For this particular friend, it would be different if the guy she was going to marry was abusive or if she herself were somehow disabled or particularly vulnerable to living with a man who is far from being on par with excellence. However, in this particular case it is neither. I don’t think the day will come where he will ever turn around and beat his wife; and should she ever want to leave provided that her body continues to obey her as it does now, my friend will have no difficulty packing her own bags and walking out the door (or packing his bags and shoving him out).

Often it seems that the most loving thing is to give a friend the freedom to make mistakes while at the same time committing yourself loving them. I know this because I have gotten myself into similar, albeit more temporary situations. After one particularly hard separation, a friend called me and admitted that he saw it coming months before. “Why didn’t you tell me,” I bemoaned half angrily, half in mourning. He pointed out that despite his best intentions, I probably wouldn’t have listened anyways. And indeed knowing my faults as I do, had he expressed his reservations it might have made me all the more stubborn when it was time to get out. Forcing me to listen to him would without a doubt made the situation ten times worse.

I watch them walk down the aisle. Perhaps I am imagining problems or telling futures that belong to someone else and not to my friend. There is little I can do now as she prepares to put the ring on his finger and announce to everyone that they know their love is a commitment they are willing to work at no matter what the times may bring or the heartaches that may come as a result. All I can think sitting in the back pew, not knowing if I feel uncomfortable because everyone is feeling joy or something else telling me that this isn’t right.

I just hope they make it.

Communion Sunday brings out the OCD in me. Ever since I was little I would dread the first Sunday of the month in church. It was literally disaster waiting to happen. First there were plates stacked on top of each other filled with the worlds tiniest glasses filled to the brim with grape juice or wine, both of which stain horribly. My mother wouldn’t let me bring a container of salt with me to church as a precautionary measure, despite all of Christ’s allusions to us being ‘the salt of the earth.’ Then our church raised enough money to buy new carpeting for the sanctuary, thus also raising the stakes for the severe consequences of dropping that which was to be symbolic of the blood of Christ. As if that wasn’t enough tension, our elders never could get the knack of passing the plates along the pews. Inevitably the men would have to do something which resembled the Electric Slide down the aisle as they never knew which pew would end up with which plate next. Often two plates of bread would be coming at you from opposite sides and created a cosmological traffic jam.

I once visited my friend’s church and discovered that Catholics all drank out of the same cup. This, of course only added to my obsessive compulsive disorder. Communion Sunday was an enormous risk. Who was stupid enough to think this was a good idea?

The more I am involved in a church, the more I find myself looking to God and saying “How on earth did you ever think this was a good plan?” Just about every philosophical outlook on the world has some serious problem with the topic of free will. For those who believe in an all knowing, all loving and all powerful deity the issue is particularly sticky. We all want a deus ex machina to swoop down in a blaze of glory and fix it all when we are in a crisis. We want a god who is a very visible superhero, complete with tights and Jimmy Olsen taking photographic evidence. Even those of us who are absolute atheists would very much like to see a world which is a vast improvement on this one.

For the followers of Christ, free will in a fallen world is counterintuitive. The fact that one can freely come to the table and drink the wine which Christ gives us even when we are bumbling fools compared to our Host is shocking. What’s even more ironic to our ears is that God uses us, though we are responsible for spilling wine and forgetting which way the bread needs to be passed to take care of each other. As any guest at a dinner party will attest, there is little worse than embarrassing your host, even if it is by inadvertently dropping the wine on a beautiful new rug.

God would rather work through us and run the risk of us spilling his blood and passing his body around the wrong way than swooping in and doing everything through force. Our fumbling ways of messing up how things ought to be, misjudging what is needed to make the world truly better, even refusing to acknowledge who invited us into the banqueting hall in the first place, are exactly the actions of the type of misfits He’s always had in mind to create a perfect kingdom. To Him, it was better to risk it all and have our choice to partake in the dinner be made in freedom, than to sit down and force feed us a meal which was supposed to be celebratory.

As soon as I walk into a church and see the wine and the bread on the communion table, it takes all of my energy to not run the other direction. I worry about the plate falling, or myself choking on a piece of bread, knocking over a glass of wine or drinking at the wrong time. For a meal with the greatest cost, I confess that I am too concerned about the manners and customs to enjoy that which has been prepared especially for me. Thus making me more ungracious than the guest who, in a moment of joyful abandon, commits the worst faux pas.

“Don’t you dare let them get you down.” I am disappointed again and as always, armies of defense come to my aid whenever I am in danger of being defeated. Mostly I am thankful. These people who believe in me for some strange reason tell me to keep going and not focus on my defeats, but inevitably I do and inevitably these are the times I wish I felt absolutely nothing. I wish I were incapable of feeling. “Chin up” they say, “Don’t let them hurt you” and they encourage me to develop a thick skin as well as a resilience and resistance to those preventing me from chasing my dreams.

I have met people who have lost the ability to be hurt and I do admire them. I once met an actor with a severe birth defect who, after being rejected for years from different drama schools and training schemes, finally built his own as well as his own theatre company specifically for disabled people, both within the artist and production side as well as a disabled only audience. He is thought by many to be a great success and someone whom I should aspire to be. But when I met him I immediately saw that he is someone I could not hold up as a role model because of all of his rejection resulted in his attempts to shield himself and grow a strong exoskeleton. His anger not only is illustrated of his resilience, but also succumbed to bordering on hatefulness towards able bodied people. His is a story of frustration and having nothing but an uphill battle unaided by his extreme ideals and, this is the part that seems inevitable, resentment.

That protective layer of course stops the pain to some degree and inevitably rejection after rejection for years on end often causes all humility to go out the window. But in the case of a creative person, such is an extremely bad idea.

One of my all time favorite quotes by C.S Lewis is “I do not doubt that whatever misery God permits will be for our good, unless by rebellious will, we convert it to evil.” As difficult as such a philosophy may be to swallow, he does have an interesting point that our rejections and the injustices we face ultimately are in our hands to decide whether or not it can be used for our benefit or it will only be used to cause ourselves harm. What we do with such rejection, whether or not it makes us feel self-righteous or change our tactics makes us want to pack in and go home or simply fight all the more harder. It’s ultimately our decision.

Last night I was asked to a meeting for a particular program that I have been trying to get into for years. It was a FAQ session and at one point I raised my hand and asked what someone waiting to get into the program, hoping and willing to wait, should do during that time in which patience seems such and impossible virtue. The man at the front smiled and said, “Enjoy the journey.” To be honest I’m not enjoying the journey of years of rejection. After years of the same philosophy over and over, I don’t think it’s possible to enjoy it and I can’t help but feel a little smug when he looked me in the eye knowing about my years of frustration and, close range, delivered his thoughts. But I am learning on the journey. Learning about myself, humility, perseverance, the willingness to go on, the dedication it takes to accomplish my dream, and above all else I am doing my best to learn how to remain open to the pain. If I do not accept pain and if I turn away from it, it will only hinder my ability as an artist.

Self defense is ultimately a reflex. It’s in our nature to defend ourselves and not turn the other cheek in order to grow from rejection or even the red lights we get on the way to the destinations we know we belong. One has to allow learning from the pains and aches. This means having to feel at peace while scared of failure. Perhaps it is the greatest among us who fail, some such as Thomas Edison, we learn about because after his failures, came successes and perhaps there have been other great people who were at the top of their game that we never even hear of. But I do know that the greatest among us never fall victim to impatience or bitterness. They choose, often in defiance, when the entire world begs them not to, to keep their heart open avoid resentment, bitterness, and sarcasm. And in hardened places of the heart, they open themselves up for even more pain knowing that in the end it will heal over strangely and beautifully.

“I’m glad I don’t have to worry about any of that”, she began overconfidently. We were in the middle of a conversation about heaven and hell, faith, the afterlife, and the overall meaning of life. A friend who does everything possible not to think about these issues, finally stated not only her denial, but also her relief that these issues would never be a concern. She would never grow old, she would never have questions that for many remain unanswered regardless of having the best intentions to figure it all out in this life.

Many people I know often spend enormous amounts of energy swearing up and down that we are here by some sort of cosmic accident. A billion years ago something mutated and a couple thousand after that, something else mutated and so on and so forth so that there was a vast domino effect that actually took all of time thus far to create the world as we know it. Had the most miniscule thing gone wrong, we might not be here and overall they are okay with that. With age and penury suddenly people are faced with the limitations of human condition. All of the answers they clung close to throughout life, be it the idea that it doesn’t really matter or it matters only so long as we are capable of doing what we want, explodes in their face and they quickly begin to question the structure on which they built their life because their own physical structure is failing them. It is important that this usually comes at some point when they are often faced with the fact that their bodies, mind, their life as a whole, is going to fall short. In short, it’s when my friends get slapped in the face with the idea that they are human and not above breaking down physically or spiritually that the cosmos comes into question. Often I think it would be great not to have to be confronted with one’s own weaknesses until I was much older. To be able to go through most of life being perfectly capable of accomplishing exactly what I want, whether it’s running upstairs to get the book I forgot on my way out the door or running a marathon in order to raise money for breast cancer. Often I think it would be great not to be aware of all the conditions that I have become extremely aware of through having friends suffer through them. Most people in high school don’t know what any number of ailments or disabilities are and quite frankly they shouldn’t have to. Wouldn’t it be wonderful, I always thought, to be like everyone else and not know that the struggle exists until I am a ripe old seventy something, retired, and living out my life exactly as an old person should. Watching my older friends (and sometimes, unfortunately, friends my own age) have that sudden flash of recognition in which they see for the first time that life is not as easy as they pre-supposed it was often causes my stomach to turn and myself want to cry out for them coming to the knowledge that I’ve always had and losing a sort of naivety and innocence that goes alongside Nietzche’s ubermensch inevitably when they lose this presumption, my friends begin to wonder if this is all there is in life, if we are just here by chance and if that’s all that matters.

For someone who has always been acutely aware of their weakness, who’s never had another option except for knowing the overwhelming truth, there is of course an advantage to this situation. Endurance and perseverance in a world that is made for perfectly able bodied people when the idea of perfection is extremely unrealistic for just about everybody in existence is absurd. Being in a state of physical adversity forces you to see the world as much bigger than yourself. It means that having to struggle more than most, you are forced to establish security beyond yourself knowing that, at any moment, you could become more dependent than you were the day before. It means not putting faith only in your own abilities, and it means knowing that there must be something greater than yourself no matter what that thing may be.

There are advantages and disadvantages of course to having what is considered the full capacity of a human being and losing it later in life and never having it to begin with. But as I watch my friends struggle with their own mortality, in many ways I am grateful for not having to do the same and being forced to ask the questions that are inevitable in life but always make everyone, regardless of age, extremely uncomfortable to have to ask. I am no one’s idea of a perfect human specimen, but I hope I am a richer human being for it.

My friend is more than happily drunk in the middle of making disparaging socio-economic comments and spouting off some of the most absurd political philosophy I have heard in my life. He spills part of his drink on the floor. We are in an English pub and as per usual, I am witnessing a social debate which would never hold up in practical circumstances. I can tell that everyone is looking at me, expecting me to say something to end the argument. I am notorious for pointing out logical flaws, particularly late at night and when others are inebriated. However I don’t want to say anything and to avoid eye contact, my iPhone is suddenly transformed into the most fascinating object in western civilization.

One of the worst things about having different physical limitations than everyone else (I almost wrote socially abnormal, but then realized that deep down we all fit into such a category) is that you have to work twice as hard to fit in. Growing up, the first two weeks of a new school were always awkward. The first few days the entire class would sit and stare at me in silence as I attempted to answer questions. An icy glaze covered the entire classroom as soon as my hand rose above my head to speak.

First impressions are always important. A visible difference between you and the standard norm, either in physical deformity, disability, or simply the wrong hair color sets everyone’s judgment against you. Suddenly all of the lessons that you learned in kindergarten, the ones about it doesn’t matter what you wear and all that counts is what’s on the inside, no longer apply. Now all that matters is who you are on the outside and how you portray yourself to the outside world. What you wear, how you speak, all contribute to a strangers quick judgments. People often look at me and assume that I have mental limitations as well as physical ones.

In my particular case, this means that there is no room to make mistakes on those first impressions. Growing up, going all through the month of September meant not raising my hand unless I was absolutely positively sure the answer I had was correct. This of course puts an end to most educational ideas. The world around me did not allow mistakes. Later in life this meant not entering an argument until I had reasonable and logical proof to point to. This was translated into refusing to be a hothead in pubs. Such a refusal goes strikingly against my nature. When you have a disability, there is no room to blurt something out without thinking. Doing so runs the risk of people automatically assuming that you are mentally retarded and usually, such an assumption is set against you anyways. Needless to say, all of this severely limits debate involvement while intoxicated and entering into arguments with intoxicated people.

I would like to live in a world that afforded me unreasonable arguments every once in a while. I would like to have an opinion and not have anything to back it up, but just keep it out of sheer pigheadedness. Unfortunately having unbridled opinion is something I can’t admit to having in public which, when I do have stubborn opinions, makes me want to hold them all the more tightly when I am amongst friends who already know that I am not what I fear to be. In an equal world, I would be able to let my guard down, but that has yet to occur. Rather, there are carefully measured times in which I can assert my views without fear of being judged the wrong way and times that I cannot. While this is true for anyone, usually it doesn’t automatically place you in a certain intelligence quota. The bombastic assumptions which are often thrown in my way doesn’t necessarily limit my freedom; my self expression is a choice I will always make. Sometimes I do limit myself by keeping silent and watching someone else actively prove himself a fool.

I was sending my electric chair careening down Tottenham Court Road while in abject anger. My muscles were tense, I was doing everything possible to dodge in and out of pedestrians and not get stuck behind any slow-moving tourists. Having just been told that my disability was going to prevent me from achieving my dreams, I was currently wishing that the instructor I had just left would fall down the stairs of her flat onto the icy pavement below and break a leg that evening if for no other reason than to show her just how frustrating having a condition that was less than ideal was. Then I remembered her crooked back and knobbly hands that were riddled with arthritis. I take a deep breath and slow my wheelchair to a reasonable walking pace, reminding myself that she does know on some level what it is like not to have the perfect body. She can empathize if she chooses to. She knows the frustration of hands which will not obey her brain and feet that shuffle along the floor that used to run when she was a girl. She knows her condition is becoming a chronic illness, and she is terrified. It seemed a little absurd, but I have to constantly remind myself of the frailty of the human condition, even as a person with a disability, an uncooperative body, looking the beast of frailty in the eye. I often forget that bodies break down because, according to some, mine was never built properly to begin with. I forget that, unlike me, most individuals don’t have a history of years struggling with their own physique under their belt by the time their physical capacity begins to deteriorate. I forget all of this and attempt to remember these simple and unalienable facts of life whenever anyone stands in opposition.

Sometimes, even after remembering the state of human affairs I would still like to speed up the process by running over a few toes and making certain people have to use crutches for six weeks just so that they can get a taste of my reality. I once had a high school teacher explain that it was a small kink in human DNA which causes differing characteristics. A tiny microscopic difference between all of us human beings creates so many silly boundaries and absurd demarcations as to what an individual considers normal and fully human and what some people would consider substandard. The most universal thing about the human condition however, is our own vulnerability and the fear that we all have of succumbing to it, but regardless of our level of terror brought about by the idea of opening one’s self wide and being honest about one’s condition, be it mental emotional or physical, inevitably we all find ourselves in vulnerable positions. To have relationships, to accept intellectual risk and encourage progress, just getting on a bike and riding down the street, getting into a car, stepping onto an aircraft, all of these choices, events, are the stuff that life is inevitably made of. Without these, the new ideas, the desire to mobilize ourselves, life would hardly be worth living so we need to accept that sometimes we do make ourselves vulnerable if for anything at all, but to experience life.

The absurdity of it all is that we continue to react negatively when someone does fall victim to their own vulnerability. Perhaps because some conditions such as arthritis, birth defects, and broken limbs are often out of our control. However if a condition is inevitable, what would ever possess us to lash out or entrap the victim of that condition? We wouldn’t think of becoming irritated by a fourteen year old because she menstruated for the first time. Such a change is, after all, is part of the human experience regardless of how awkward it may be. And yet, we often cannot look a person on his deathbed in the eye, much less our friend who was once perfectly able bodied now confined unexpectedly to a wheelchair after being struck down while in prime physical condition because of some ridiculous accident.

My impatience with the people who fall victim to these absurd beliefs , that life is only livable if one has full use of all four of his limbs and is the ideal weight, height, and intelligence comes from such peoples lack of experience. They have yet to learn what it is like to be dependent on other people who have very little in common with themselves. How, when you are hungry and you want a meal, it doesn’t matter what that persons’ skin color, religious or political beliefs are, all that matters is if they are willing and able to prepare hot food when one is considered unsafe in the kitchen. This forced dependency on each other, the ability to serve others unlike ourselves, and be served by individuals who you would never expect service from, it may well be these circumstances that make us vulnerable, and without them, we begin to lose our humanity.

It is one thing for a teacher to assume because of my physical condition I am unlike her and unable to find a place in “her society.” But the fact is, she is much closer to becoming like me than she would like to believe. It is the fact of living that one misread stoplight or piece of poor judgment on anyone’s part, not only our own, can cause us to wake up completely changed, dependent and confined in ways we never thought possible. I suppose in a way it is hard for me to remember that in her stubbornness to deny her flaws and weaknesses. She and I are much more alike than I care to admit.

I never grew up believing in Santa. My parents decided that perpetuating the belief in a man in a red suit coming down the chimney was the equivalent of lying to one’s child. (more strength here, you can’t equivocate the natural conclusion) A certain neighbor of mine had the opposite upbringing. He insists to this day that he believed in Santa Claus until he was twelve years old. When evidence began to point to the contrary, he would do everything possible to deny it and he says he can still remember the day when beyond a shadow of a doubt he was confronted with the truth and could go no further.

I find this story not just adorable but also amusing. This is a man who has now grown up to be a complete atheist, but in his youth insisted over and over in the reality of a figure who is completely unfounded in any truth. Today he claims my view of God is likewise. Perhaps it is the change between my friend when he was age eleven and today, he is thirty seven, that I find so captivating. One thing I do wish my parents, who always asserted that there was nothing redeemable about father Christmas, understood is that for a young person; a belief in Santa Claus exercises his faith muscles. The idea that a man could live who would love everyone and give of himself all year does seem absurd to all of us, regardless of this man choosing to wear a red suit or a crown of thorns. In short, someone who constantly gives is seen to be too good to be true.

In the upper highways that wind around Wisconsin, there was a farm that we would pass routinely. Every year it had a very large wooden cutout of Santa kneeling at the manger and taking his hat off out of respect for the baby Jesus. I remember this decoration vividly as the one that stood out, out of the thousands I saw each year. Looking back I realize it shows that even our fantasies point to a single man of peace.

In many ways, not having the opportunity to believe in Santa Claus didn’t matter. I grew up in a school that was mostly Jewish and had absolutely no use for Father Christmas. When I was older, it was my beliefs that seems fanciful to them rather my peers belief in Santa seeming like wishful thinking to me. Sticking to ones’ beliefs and inevitably tests faith so that we know that if it is something we truly believe or something we were taught. Often times, this stubbornness and belief in beings and ideas despite all the evidence against us separates things into two categories; both too good to be true and those that are so good they must be true.

People often ask why I do not join a community built for cripples (actually they say “individuals with physical limitations” but the stigma is still the same). I have trouble finding friends who also have physical disabilities and when possible, usually find it best to look at a person not for what he can or cannot do, but rather, who he is or isn’t. In this way, disabilities are the last thing that enter into my mind when examining the qualities of a particular individual. Many I speak to often find this point frustrating, occasionally to the point of hypocrisy. For me, it is simply, life.

I was never raised to be disabled. Growing up, my family did everything to keep me out of an extremely flawed special education system. Even today, the United Nations report that only three percent of all people with physical disabilities in the world are able to read. (http://www.un.org/disabilities/default.asp?id=18) Among women, that goes down to just one percent. This means that out of four hundred disabled women in the world, only one of them is literate. If this shocks you, I’m not surprised. It is shocking. Our world is blissfully unaware of what living conditions are like world wide for people with disabilities.

Recently I saw a report from the mayor of London analyzing the learning conditions of persons with in a city some consider the world’s capital. The title alluded to the idea that people with physical limitations almost live in a different city than London. Being unable to use a form of mass transit such as the London Underground and unable to access many of the neighborhood shops on any high street, people who have any sort of physical limitation know a very different London than those who are able bodied. Transportation is slower, stores with narrow aisles a bigger challenge, invasive even, and the looks from people on the street will often send individuals back inside their houses in order to avoid hostile environments.

But being disabled does not stop with environmental issues. As in any civil rights battle, the problem is steeper and more complex than one would care to imagine. When I was growing up I heard over and over again, “Be patient with yourself” and “take it slow.” Now why I would ever want to slow down when it took me and hour and a half to get dressed that morning is beyond me. However, taking it slow often gets transformed into setting lower goals for individuals with disabilities. It means taking it easy rather than slowly chipping away at a complex algebra problem. Some things, particularly in education cannot be rushed but more often than not the goal post for disabled individuals is removed entirely so that a substandard type of performance becomes acceptable lessening the amount of homework problems, showing the student that he should only have to read the Cliff Notes rather than the whole book, or even insisting that a book is too difficult for a student to read are all common occurrences for someone who was raised to think of himself as physically disabled and therefore expected to take no initiative in his own life. Thus, more often than not, the great schism which faces individuals with physical limitations is not the level of access in their environment but it is their submission to a type of institutionalization which works for societies comfort rather than the students good.

As has been the case with civil rights issues in the past, this false education and insistence that individuals with disabilities are helpless is more detrimental than any staircase or missing form of public transit. It is through the educational system that individuals with disabilities are still often given different books, different classes, different teachers, and different expectations which causes the schism between the fully able bodied world and the disabled world to continue year after year after year. By insisting that the disabled world is somehow separate (nobody said anything about equal) from the way fully able bodied people live their lives means that there will always innately be that division between different people. Inevitably by keeping any population separated, society ensures that they are marginalized. The mayor of London is right, living in London with a physical disability means living in an entirely different city than Londoners who are able to get about without much thought. Perhaps this is why I am so impatient when well meaning individuals tell me to take it slow. It takes me so long to get to my destination in the first place, if I were to take it slow I fear that my world would stop altogether.

Those Who Used to “Teach”

It is often said that those who cannot do, teach. And as some members of my family would like to add, those who cannot teach go into education. But embarking on conservatory training I discovered that there are teachers who cannot do and teachers who can no longer do. Both often make splendid teachers. The teachers who have given up there own performing careers due to age or ailment are often times the most giving of their time and the most insistent on perfection, creating a rare combination of encouragement and admirable standards. All too quickly the image of ancient ballet teachers hobbling on canes comes to mind. People who have seen performance for what it is as well have seen their own careers dissolve through circumstances beyond their control and have thus rededicated themselves to improving other individual’s forms rather than other individuals chances to get into the industry.

A particular conservatory instructor comes to mind. He is an individual who was well known in his day as an incredible Shakespearean actor when, after a stage fighting accident during one summer, lost the use of his left arm. That was the only extent of his injury, however it was permanent and as a result of having a single limb immobilized had to give up his craft.

Sometimes I sit in the back of his class listening to him lecture or give advice to those of us performing and I often wonder what he thinks when he examines me in his studio. An injury, which from my perspective seems extraordinarily small (although I’m sure from his point of view, it was anything but negligible) ended his career decades ago and here I am more bound in my body than he is now despite his age, embarking on a professional acting career with the insistence that disability and physical condition does not matter. He, unlike some of my tutors never offers me a detrimental word or insists that I despair regarding my impending doom as a starving artist. His standards are set as high for me as anyone else and he insists that I can be trained.

I look at him lead the class in warm ups and articulation exercises and more often than not, I am struck by the constant reminder of my ultimate goals of being in art. I dream of a world where having an “imperfect body” or being seen as more representative of the human condition. I have a vision of a world where people take as little notice of physical differences as most people do different races and the insistence of segregating the disabled because they are different is labeled as “hateful” as racism or homophobia, and I believe that it is art, particularly acting which will help our society reach these goals as it normalizes differences and forces our world to look at situations and people which many would otherwise not run into living within their own suburban plan. I want to create art and act in pieces that reiterate over and over that losing the use of a single appendage is hardly reason to bow out of the industry and take up teaching as a consolation career when one is regarded some great tragedy occurs.

I sit in his class daily and come to the conclusion that I would hope if the same injury happened to my teacher today, he would keep acting, even in the face of adversity and insist that he belonged on the stage and his talent did not disintegrate as a result of losing the use of a single appendage. I want to help create the world in which he never had to quit due to an accident that was merely an unfortunate circumstance. I can’t help but wonder if, after the accident, he too yearned for a world where art could incorporate the realities of life.