I wrote a thing today. It's meant to distribute to older patients at the Children's Hospital, but I thought I'd sit on it for a bit and see if it still seems appropriate. And, show it to the lot of you.

If All The World's A Stage...


Hi. My name is Jonathan Snyder. I was born with a bilateral cleft lip and palate, and this essay is intended primarily for the audience of others who have a cleft lip and/or palate and/or another facial difference. It is my hope that it will be also be of use to anyone with any kind of difference (physical or otherwise) which can cause one to be labelled based on that attribute, and experience all of the social consequences that might entail. Perhaps you've guessed that that description could apply to anybody. If so, maybe you can see that part of the purpose of this essay is to work toward building a bridge of understanding between even the most "normal" seeming of individuals and those with the most apparent differences. We are part of the same human family; our DNA code is 99.9% the same. The differences between us are miniscule in the bigger picture, but in the social realm even the smallest discrepancies can be magnified into seemingly insurmountable chasms. Knowledge is not the same thing as power, but it is a prerequisite for it. I hope we can pool our thoughts to become wiser regarding this frontier in the human experience.

What are the social difficulties associated with having a facial difference? Like any difference, it can make someone a target or an outcast in the social realm. This is called stigma. If others are afraid to associate with you, this can lead to lower self-esteem and the belief that you are undesirable as a companion (or as a mate). It is very important to realize that these beliefs themselves are untrue and infinitely more harmful than the initial responses of others which led to them, because they will guide your behavior and confirm the assumptions of others, which in turn will reinforce your own negative beliefs. There are many, many people on this planet who are all different, and those who would be interested in being friends with or even dating you are probably closer than you think. These beliefs are self-fulfilling prophecies. Your attitude, which is very related to your beliefs, determines more than anything else the way that others perceive you. (1) The problem is that the personality dimension can't be guessed accurately at a first encounter. One of the most essential skills for living with a facial difference is to not let first encounters with each other determine what your attitude will be, because as your attitude becomes apparent to others it will set the real tone for every other encounter. It is possible to change any negative stereotyping of others based on a surface approximation, if you have a good attitude. Some people, however, may just not like your looks or your personality. This is a normal part of the human experience. The reactions of these people don't have to control your own attitude, either. No one else will ever know the range of thoughts, emotions and experiences that make you you and even the most informed judgments will be inaccurate to some degree. If someone is determined to see you as a fully understood and labelled character in their own mind the error is theirs, not yours.

Another aspect of the difficulties faced by those with facial differences is that there often seems to be a "taboo" around discussing matters of stigma. This is rarely an explicit taboo in the form of an order not to talk about it, but a usually unspoken desire to maintain a veneer of politeness by not mentioning a subject which may embarrass someone. I believe this is actually one of the worst problems for those with stigma, because by not talking about a stigma you don't get any better at talking about it. You don't get the help and insights of others to aid in understanding it. If others would actually be able to relate to it, this is something you never discover. Instead, the ones who are trying to be polite will be afraid of mentioning any subject that inadvertedly brings the stigma to mind, embarrasing both you and them. The net effect of the politeness taboo is that it weakens the stigmatized person. It builds the impression that the stigmatized attribute is always a weakness, an embarrassment to yourself and others. We could label this taboo feeling as the elephant in the living room that no one wants to mention. It creates a lingering feeling of discomfort for everyone involved, the causes of which can be misunderstood and even lead to resentment on both sides. So the politeness taboo, which on the surface is meant to make a stigmatized person feel comfortable, actually drives a subconscious wedge between the stigmatized person and others, which isolates and weakens them.

Worst of all, the "elephant in the room" syndrome tends to attract the kind of person who has the least interest in being polite: the bully. The important thing to remember about bullies is that their motivation to belittle others is motivated by an inner fear, insecurity and self-dislike. Consider who they choose as their targets: the social outcasts, the shy ones who do not threaten them. Ask yourself: is this the mark of a brave warrior, or a petty tyrant and a coward? Bullies have a need to prove to others and themselves that they are bold, brave and strong. One of their favorite ways to do this is by openly violating the politeness taboo and mocking the elephant or elephants in the room. They are the most toxic people for the stigmatized, loading them with false, distorted and negative beliefs. The negative example they set can turn the crowd against the stigmatized, channeling the associated discomfort and slight feelings of resentment associated with the elephant-in-the-room syndrome into emulating the bully's poisonous example. Their motivation in this, like the bully's, is fear. No one wants to be in the spotlight of the stigmatized, so people will often jump at the chance to be able to delegate it to someone else, even if it makes them feel a bit dirty inside.

Don't believe the false, simple-minded stories the bully wants you to believe about yourself. And don't be fooled into believing that the bully is the example of bravery he wants everyone to think he is. Bravery requires honor; the bully is the kind of petty tyrant that the truly brave individual takes a stand against. Above all, know that there is hope for the situation. There is no shame in approaching parents or teachers for help when necessary, because the bully is a coward (not the hero he pretends to be) and his antics to draw attention to himself are a waste of your time. You've got more important things to do, and there's tons of other people more deserving of your time.

Perhaps you have been asked outright on occasion, "what happened to your face?" or "what's this?", as the questioner indicates the spot on his or her own face where your face is different. Maybe you felt the slight hush of voices around you as folks leaned in to hear the answer to what they were afraid to ask. You probably gave a basic description of what your facial difference is and where it came from (such as a birth defect). Maybe you felt your heart beat a little faster. Was it as awkward as you might have feared? Did you feel a sense of relief that somebody brought it up? Did it feel like there was more to say, but you didn't quite have the right words and/or they didn't quite know the right questions? Part of my objective in writing this essay is to help prepare you for "spotlight" moments like these, because I believe handling these with confidence is the antidote to the problems of social isolation due to stigma, elephant-in-the-room syndrome and standing your ground when a bully shines the stigma spotlight on you in an unflattering light. (3)

The sociologist Erving Goffman observed that all social life consists of playing a series of roles; thus we are all born and raised to be performers. In a sense, having a facial difference is a role just like any other. However, it has very seldomly (if at all) been explored beyond negative and distorted interpretations: medical patient, handicapped person, victim, outcast, weakling, clown or even monster/freak. My real purpose in writing this essay is to explore the real, positive possibilities of this role. You may ask: how do I know that any positive interpretations even exist? I know this because none of the negative interpretations mentioned above take into account a wider view of facial difference, struggle, conflict or stigma which attempts to reconcile with its actual place in the grand scheme of things. To understand something accurately is an inherently positive thing, so I have faith that a truer interpretation will be an encouragement to the human spirit rather than a disappointment.

The weight of playing the role of the person with a facial difference is aptly described in the Changing Faces organization's literacture (3) as "feeling that you are always on duty, even when walking down the street." Someone could ask a question about your appearance, or you might need to muster your dignity to tolerate or respond to a rude comment by a bully-type personality. The goal is to be nonchalant and inconspicuous. On the few occasions when I have met another individual with cleft in public, there has been a subtle feeling of mutual unease which seems to me comparable to the fear that we are somehow blowing each other's cover. The unique role of the person with the facial difference is a real phenomenon; just not an explicit one. So what is it, exactly?

To answer this question, let's take a fresh look at what a facial difference is: a scar, disfigurement or deformity, like any other except for its location -- the face. The importance of the face in interpersonal communication is such that it even precedes verbal language in our development. It is the purest symbol of the individual human personality. The philosophical questions associated with just what it means to be a single, conscious human are astounding. In the words of novelist Alexander Solzenitzen, each human is a center of the universe. If our consciousness were somehow transferred to another's body and given exactly their experiences and memories, would we not then "be" that person? Each of us makes the choices we make for our own reasons, so that if we were ever completely in their "shoes" we would make those same choices. This doesn't mean every choice is a good one or that we can ever even know the entirety of what makes a person who they are, but it is the foundation for empathy and understanding. Being able to mentally put ourselves in another's shoes makes much learning and communication possible.

A face is the original "television" in the sense that faces we look into as an infant are the first windows we have into the world of human experience. In a way, a facial difference is like a crack or line of static on a TV screen, causing a slight double-take reaction at first glance. A facial difference might suggest a certain facial expression or expressions. It's basically a bit of noise that distorts the signal passing through the face. On this almost everyone can agree, but here is where my interpretation parts ways with most others. When seen in light of the paradigm that we are all separate, self-contained beings who first priority is rightly the propagation of offspring and the preservation of our flesh for as long as possible, it's easy to see how some people see those with facial differences as disposable in the grand evolutionary scheme, broken television screens to be discarded. This paradigm, however, is flawed. We are all profoundly interdependent beings. We are each very much a product of the cultures we were raised in. Our own consciousness remixes this in a totally unique fashion, but without the wealth of symbols, language and knowledge we have inherited from our ancestors, our personal identity as we know it would not exist.

This brings to mind another very important flaw in the social Darwinist paradigm: the human capacity for symbol manipulation is essentially a new and different dimension of evolution. Richard Dawkins, perhaps the most vocal spokesperson for evolution, takes great pains in his intro to The Selfish Gene to point out that our ability to be aware of the competitive bias of our genes implies that we have the ability, and perhaps the responsibility, to counteract those urges which are destructive and wasteful. And there is no question that the social stigma endured by those with facial differences is destructive and wasteful. To put this furthur in perspective, consider a quote by another spokesperson for science, Carl Sagan: "In the cosmic perspective, each of us is precious. If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another." I might paraphrase the second sentence as: " if a human has some kind of scar or blemish on his face, don't try to saddle him with insecurities and make him question his self-worth."

One of the most special things about being human is our ability to take in the stimulus of our surroundings, assess them, and make a choice to respond in the way that seems best. In this way we can approach any obstacle and adapt to it, even if the only gain we can manage from it is a lesson or the honing of our character. (4) When people notice I have a facial difference, I would like this bedrock principle of response-ability to be something they associate with it. I would like them to see that human life may persist and love life in the face of all flawed beginnings, tough challenges and the spectre of impermanence. People don't like to be reminded that flesh is fallible from beginning to end, that they will die someday. I can make a statement with my attitude that life can be still be enjoyed with the awareness of its fragility, because I regard myself as a part of something greater.

The facial difference need not symbolize death or decay alone, however. Consider the mistake made by the artist, the musician, or the engineer, which with the application of imagination turns into an interesting new form (this kind of mistake is sometimes called a "stop-gap"). This is part of the nature of improvisation, to just relax, see what happens, then adapt and go with the flow. Life would be boring without exploration, experimentation, and the unknown. Regardless of social pressures to conform, there is a higher informational content in the exceptional unit of a series (5). Consider the well-known poem:

Roses are red
Violets are blue
Sugar is sweet
And so are you

Nearly everyone knows this poem, and guessed how it would probably end as soon as they read the first line. Now consider this one:

Roses are red
Violets are blue
I'd like a sandwich
Perhaps even two

It's less likely you were able to guess how this poem ended -- it had more information for you. Now, this one by Steve Alien:

Roses are red
Violets are blue
You think this will rhyme
But it ain't gonna

This contains still more information, even to the point of breaking the form.

Why is the social tendency to ostracize those units that carry greater information content? I'm not sure; it could just be a consequence of how social dynamics work. On the other hand, people are often able to display different attributes about themselves in order to attract positive attention. Gregory Bateson's definition of information might offer a clue: information is the "differences that make a difference." So, although all three poems above were different, it was the combination of factors -- the content, the form, your own preferences -- that caused each difference to make a difference in its own way. Similarly, the social difference that a facial difference makes depends on how it's being framed. If the bully-minded people are the main ones framing it for you, it won't be much fun for you. On the other hand, a person with a good attitude could frame it as a symbol for life lessons, a catalyst for positive humor, or just a simple physical accent for a rich / interesting / engaged / you-name-it personality.

Don't let anyone tell you that you don't have a contribution. Your life experience is as valuable as anyone else's, and as someone with a facial difference, you traverse a frontier few have left detailed records on. Yet, the informational content of that frontier is great. At the same time, you are a human being like anyone else. By and large there is very little about your facial difference that sets you apart from others, except in how you respond to it and how you respond to the responses of others. There is no reason why you couldn't reach a point where it served consistently as a springboard to humor, higher awareness or friendship.

Now that we've examined some of the unique properties of the facial difference role (or archetype, to use Carl Jung's term), let's revisit some of the more negative/incomplete interpretations to see if we can perhaps take them back.

The patient:
In a sense we are all patients undergoing treatment for the terminal condition of mortality. As previously mentioned, a facial difference can provide a symbol that human life is wonderful and transcendent even though it is fallible and impermanent.

The victim:
A facial difference with any kind of positive attitude behind it can symbolize that we are more than just puppets of our circumstances. If you have worked with a victim complex of your own, then this places you in a unique position to help others recognize it in themselves.

The outcast, freak, monster, "other":
People love to have a screen on which to project their own dark side. A scapegoat is easier to fight than an abstract fear, such as the fear of death discussed above. This is only one possible variety of negativity that might be projected on you, however. In the words of facially disfigured writer, comedian, speaker and actor David Roche, "we are all disfigured" -- by self-doubt, fear, insecurity, resentment, any number of things. To be aware of the game of projection is to take the first step toward rising above it, rather than playing the game yourself in a self-righteous, vengeful or submissive, victim role.

The handicapped person:
This is one of the trickiest ones for me, personally. It's an awkward label to begin with, and even moreso for those with facial differences, where it is hard to pin down exactly what the "handicap" is or if it even exists. Part of this role is the perception that the person is overcoming their handicap and/or has overcome great challenges in the past. While this is not entirely untrue, it can be an oversimplification, at least in the case of those with facial differences. Some individuals may not have made much progress in consciously working to adapt to or overcome social stigma, athough they may have still suffered greatly for it. Although they should be respected for what they have been through, to compliment them for their "bravery" is to offer bascially unearned praise. This implies that the bar is being set lower for them and they are being pitied or condescended to. People in this position need understanding more than anything, in my opinion. They need to be able to explore how they are similar from others as well as how their life experience has been different.

One classic archetype that relates to the handicapped person is that of The Wounded Healer. The idea here is that once you've tended your own wounds, you can use this experience to assist the healing of others. Since the location of the psychological wound is so often conveniently located in the same location as the visible, physical one, it seems like the Wounded Healer is almost a role that the mature facially differentiated person is born to play. However, not every such person may have profound life lessons to impart. Maybe all they have to say about their facial difference is, "it's just a tiny part of who I am", then shrug and get on to some other, non-therapy-oriented pursuits. My point is there may be a stereotype that the handicapped person will always possess some profound wisdom. I don't think they necessarily do, any more than other people. Everyone possesses some wisdom intuitively, some wisdom that they have worked for and forged through their experience, and some ideas masquerading as wisdom which have yet to be proved, are misguided or are just plain wrong.

The clown:
The negative side of the clown in question here is the involuntary, unintentional clown. The one that is laughed at, rather than with. My advice here is simple: work toward being to laugh at yourself. This requires dealing your own issues and being to question your own beliefs. Once you can laugh at yourself, you can easily use humor to your advantage in a positive light. Humor is perhaps the ultimate social lubricant, a form of intelligence in expression. Being able to play affirms the ability of the human spirit to enjoy life in spite of it all.

One form of creative play that interests me is the coining of new, more usable terminology for cleft palate and facial differences in general. It's pretty much impossible to guess which words will take off in usage, but if we keep the ideas flowing then there's a chance something good will take root. Here's a few ideas of my own:

"Clefted person" -- a person with a repaired or unrepaired cleft palate.

"Cleftee" -- a person with a repaired or unrepaired cleft palate. The "ee" suffix, like selectee, appointee, or pledgee, emphasizes that the person has been selected (perhaps by nothing more than chaos) for a life experience that includes medical issues and stigma, but also the chance to become more empathetic (4) and live on a frontier of human experience.

"Mendetta" -- a compulsion to heal oneself through helping others, felt as a yearning absence in the soul. Also possibly a word for a repaired or unrepaired cleft palate. The Jewish myth of Tikkun Olam states that the universe was created by pouring divine light into clay jars, which could not hold the Light shattered into many pieces and formed the universe. The point of existence, then, is to repair the world through good deeds, which release sparks of Light from the shards. Root words are "vendetta", and "mandelbrot" -- (as in the Mandelbrot Set -- a fractal object in chaos math with interesting properties, where any small part of it contains a structure that mirrors the entire object.)

"Clepheract, clefract" -- a repaired or unrepaired cleft palate, perhaps also its recipient. Primary root is the word "tesseract", which is a cube squared into the hypothetical fourth spatial dimension. This emphasizes that a cleft can be seen as a gateway to another dimension, namely the awareness of the interconnected nature of things and other topics discussed in this essay. Other similar words include artifact, refract, contract, decipher, and cataphract. A cataphract was a heavily armored knight, which relates to the constant "en garde" feeling a stigmatized person can have. As a furthur extension of this sprawling metaphor, the modern hand salute is said to have descended from the tradition of armored knights lifting their face masks to acknowledge another person. This emphasizes both the symbolic importance of the face, and the situation where the face may be a chink in someone's armor -- but perhaps a chink willingly exposed, as part of the matter of acknowledging another human being.



Notes

1 -- Cognitive Behavioral Therapy is extremely useful for both dealing with low self-esteem and dealing with criticism or mockery from others. "Feeling Good" by David Burns is a good introduction. Also, the book "Psychocybernetics" by Dr. Maxwell Maltz drills home the importance of the self-image. Dr. Maltz was a plastic surgeon who asked himself why some of his patients' depression improved after a change in their appearance while others did not. He concluded the really essential factor was the patient's self-image, which can be changed by the kinds of "mental operations" described in his book and also in Dr. Burns's.

2 -- Check out the pamphlet "Helping Your Child Cope With Teasing" by the AboutFace organization for advice on this subject.

3 -- Check out the excellent pamphlet "Handling Other People's Reactions" by the Changing Faces organization for practical advice on talking to other people about your difference, dealing with rudeness, social situations in general or even bringing up the topic yourself.

4 -- This principle of ability to choose the response to our circumstances was what enabled the psychologist Viktor Frankl to survive his captivity at Auschwitz, going on to develop it as the foundation of his theory of logotherapy. Stephen Covey also used this principle as the foundation of his classic book, "The 7 Habits Of Highly Effective People."

5 -- For this concept, I am indebted to the book "Prometheus Rising" by Robert Anton Wilson.

6 -- I've always believed that having a cleft disposed me to be better at identifying with others. Perhaps it was a consequence of introversion or watching the behavior of others. Michael Williams-Stark, who runs improvisational acting workshops for children with facial differences in order to teach them social skills, says that the children take to acting quite naturally. I have experienced unexpected success on the stage myself before; perhaps you have a talent for acting as well! Check out Michael's website at www.makingfaces.ca