An Article by Mark Charbonneau
When kids can tell you all about their favorite superhero or dinosaur, I could tell you I have Hemi-Facial Microsomia with Goldenhares Syndrome, a congenital Facial Difference*. Internally and externally, the left side of my face did not develop symmetrically, and was smaller, like a normal face fused with a baby doll’s face. It’s caused by a vascular infarct that impedes blood flow to developing structures early in the first trimester. This vascular starvation complicates the growth pattern for the affected regions as everything else develops normally. My natural non-functioning left ear and eye resemble that squishy undersized grape you find on the bunch. Important facial muscles and structures internally and externally are missing, causing my left eye not to blink, or my smile and left lip not to move in unison with the right. Herein lies the crux, Sigmund Freud coined the term “Unheimlic” which translates to a sense of oddness, a weird disturbing feeling of uneasiness. It’s that off-putting feeling people get when a costume mask, a wax statue, or a mannequin, is perceived as unnaturally human. Your brain is so finally tuned to the symmetry and aesthetics of a face that subconscious judgments are made even before your conscious mind is aware you are looking at a face. I know when the majority of people first see me, they want to know about my face. Let me be empirically clear: what you first see is not what you get, and your first impression of me is not who I am. Realistically, people see a Facial Difference and not the person behind it. The trials I have gone through have not made me bitter, but stronger, and challenged me to develop a “true grit” that transcends what people see and has touched all aspects of my life.
After school I used to watch re-runs of The Munsters, a late 1960’s sitcom shot in black and white about a family of benign monsters living in a creepy mansion with typical family issues. The Munsters were comical, but in a strange way I related to them, which came to mind wanting to illustrate how our society is different for people with a Facial Difference such as myself. For those younger than I, lets meet the characters of The Munsters. Herman Munster is the breadwinner of the family, works at a funeral parlor, and has a jovial simple nature. He resembles Frankenstein, with a flat head, scars, sunken eyes, bolts on his neck, tall and lumbering. The other family members Lilly his wife, Eddie their young son, and Grandpa are vampires, and ancillary to our discussion. Lilly’s niece Marylyn, a fetching young blonde college student living with the Munsters is the catalyst between the family and society. Standing in stark contrast to the Munster family, her appearance is “normal.” Her plain appearance is viewed as an affliction, as she is the “Ugly Duckling” of the family. In conversation this is referenced as being “her handicap.” or “her condition.” Marylyn bemoans her appearance as responsible for frightening off would-be suitors, when internally it is her misaligned projection of people’s reactions to the families outlandish appearance onto herself combined with the families coincidental meeting of her suitor that does the trick. This gag was used extensively to exaggerate the contrast between the “normal” and a “bizarre” reality.
What truths and life lessons could I, a school-age youngster learn from The Munsters? Like my family, the family units were strong, stable, endearing, despite different life stages and roles. All family members thrive in their own way without animosity and based on a sound foundation of family created a rich loving happy state of normal. My siblings are 6 and 7 years my senior, and in different life roles than I. Our peer groups never intersected; our interests never aligned. They were in high school as I was in primary school, when I reached middle school, they were in college beginning their adult lives. I had to navigate growing up, peer relationships, and life experiences against the complexity of a Facial Difference on my own. My parents did a remarkable job navigating family needs and my medical condition in a time when support for someone with a similar circumstance was not available. One thing my family could not prepare me for was meeting a harsh and critical society. Being called a monster or ugly was nice compared to the litany of other inappropriate names I have been called in public and while attending school. I clued into the reactions Herman and his family received from others outside the family. Their experiences patterned one of four themes: The Idiot, The Fear-mongering Monster, The Freak-show Exhibit, and The Genuine Person. Each of these themes resonated with me in my non-sitcom life.
The Idiot is most impactful in our society today. In school I was the clumsy kid navigating my sensory deficits without hearing, vision, or balance systems on my left side, trying and failing at team games or sports, always being picked last. Looking different while growing up, Social Currency in the schoolyard was gained by whoever made the most cruel and insensitive joke at my expense. In Elementary School, I was befriended by someone new, invited to their peer group thinking acceptance had shifted. I was invited only to be laughed at, teased mercilessly, and given the nickname “Elephant Man.” They drew pleasure in contorting their expressions to match my facial paralysis, stumbling around matching my unsuccessful trials to catch a ball or activities people take for granted. The harsh lesson I learned is be very selective with friendships and trust I place in others authenticity. In contrast to today’s Political Correctness growing up in the ‘70s and ‘80s it was about silently taking your lumps and suffering this routine abuse while your Tough Shit Card got another stamp. I am confident my card is larger with more stamps than most. Culturing my own “true grit” means no tear-jerking sympathy, or being pissed at the world, A stigmatizing bias of our society is if someone looks different, they are intellectually challenged and inferior to others. I call total organic bullshit on this. In school no Occupational Therapy or support services were available for the ugly clumsy kid trying to cultivate a healthy self-identity on my own, fighting to keep from misclassification to Special Ed by school administrators who knew no better. I am a college graduate, I was not top of my class, I did my best being jerked out of school yearly for 4-6 weeks of reconstructive surgery and recovery. Mind you, this was not nip-tuck fix a teeny boo-boo outpatient day surgery in a posh spa, it routinely clocked in at 7-9 hours unconscious on the slab. It was wreck your hairstyle, split your scalp open from ear to ear, cut your facial skeleton apart with a bone saw, rearrange the pieces and build new ones from bone, skin, and cartilage harvested from other areas. With a world-renowned surgeon’s skill and mastery, bone was wired in place and the skin sutured back together like the cover of a baseball. Compression bandaged up, oozing, tubes everywhere, throbbing with every heartbeat, swollen, and all putrid colors of bruising, incidentally, yes this goddamned hurt. It was painful, a difficult burden for me and for my parents. It was time in the ICU, a week in hospital and my parents had it no better arranging pre-op Cranial-Facial board consultations, x-rays, castings, photographs, and scheduling follow up care. We endured a flurried stressful teaching surgical consultation in a large room with 40 silently observing surgical residents as my intimate medical history, diagrams, gory operative photos and x-rays discussed and laid raw and bare for all to witness. Following the stress of a child in surgery, it was days at the hospital and nights in a motel. It was “survival mode.”
As scars are present on the outside, the psychological scars inflicted by society can be even more raw and garish. People taken at face value and made fun of because of appearance is a permitted unspoken societal ill. Comedians, hiring managers, people of influence, and others think discounting someone is harmless and acceptable. (1) While Federal Labor Law protections exists prohibiting job discrimination based on multiple criteria, no protections exist for disqualifying a job applicant based on appearance bias as had been my experience several times. I can’t very well go to HR department of my “inclusive” technology company and say I didn’t get the job or was passed over for promotion because they have a problem with my appearance. Validating their deficient logic Hiring Managers and decision makers think they are “helping” by shielding me from others or others from me. They may see a face that looks different, but there is no reckoning for this insulting, and unacceptable discrimination. When perpetuated this fails to evolve a society. Recent advances in inclusion do not equate to acceptance for all. As societies consciousness turns to discrimination, awareness and inclusion for individuals with a Facial Difference has failed to advance. My choice would be to be treated justly as a normal person. A normal person that has overcome a lot, cultured a “true grit” to challenge discrimination asking the question, who really is the idiot?
The Fear-Mongering Monster. Fear that a person who looks different is indeed a monster who will harm, scare, and frighten others out of misunderstanding or perceived sinister motives. Throughout history, we have been conditioned that differences conjure fear and fright from the “unclean” suffering God’s wrath in biblical times, to the current depiction in media and literature. Peoples perception is taken at face value, you are always able to easily spot the antagonist, villain, criminal, mentally unstable, or purveyor of evil deeds as the person who looks different. As you observe Herman Munster’s relationship with others, his good intentions become clear but in life we don’t have an omniscient view of a person. What makes up our first impression is what we witness in the initial transnational moment with someone. As this is difficult or impossible to change, think of how you meet someone new, the “I’m OK, Your OK” gestalt at work you usually share eye contact, a pleasant smile and warmth. This is never my experience meeting new people. To some degree I see the smile instantly change to a quizzical glance of uncertainty until the shock is processed, and the person stumbles to a new normal. Filtered through this altered lens of society has made for difficult reconciliation of hard lessons and questions of why societal norms do not apply to me through no fault of my own.
The Freak-Show Exhibit. Just like Herman Munster, sometimes I feel like a curious specimen to be examined by others, with lack of human emotion and essence of humanity. Unlike staring at an inanimate statue, I a living thinking emotionally intelligent and feeling person with a soul would like to know what implicit right is granted to others that makes this acceptable behavior? In college, I worked as a cashier in a defunct chain supermarket. In the 90’s Handy-Andy was a truly scum-hole grocery store that didn’t have price scanners. I unloaded your cart and keyed in the price, setting items on the counter for bagging. This provided ample opportunity for the stare down. Shoppers were from a community that was not affluent, lacking social refinement and educational opportunity. This led to a brash line of questioning: “Hey, what happened to you?” or “Were you in an accident?” and the ultimate gut puncher “What happened to your face?” Yes, these questions were asked, yes, they are horrible questions, and no this is not what you ask someone you don’t know. These questions would hit unexpectedly and were especially heinous because they were after concluding a series of major reconstructive surgeries. Psychologically you cannot live a pleasant life if you are preoccupied with a defensive canned response at the ready. Just once, if I had not been caught off-guard, I would have liked to have expanded their thinking, bring attention to the brutality their words cause, their lack of consideration, of basic human dignity and respect for others. Sometimes through misdirection and for my own self-preservation I would avoid the questions altogether.
The Real Genuine Person. As life is not all gloom and doom, there are remarkable people among us that are the real deal, you instantly know it when you experience them. They see beyond the physical and instantly connect with you human to human. They truly switch it up, its the “You’re OK, I’m OK” gestalt putting others first. This would be similar to what you expect from a church, people united for a common purpose and belief in the divinity of the person and gifts of the spirit. It is a relationship of hope, of a higher calling, and being genuine that should be the goal for all to strive for. It is the continued practiced belief there is good in all people as there is God in all people. When someone makes this effort they rise above exceptional seeing beyond the superficial. With these people seeing me as a person, I don’t mind answering their questions, they have great insight, wisdom and strength of character. I will gladly share my story as I embrace the noble cause of making the world a better place for people like me with a level road so that none shall stumble. Let me share two examples. I was at a big-box store looking for an item when a man brought his two children to the same aisle I was at. One child noticed me and asked the question why does that man look different. What I saw was truly inspiring, as the man stopped what he was doing, got down on his knees to the child’s level and explained he did not know my circumstances, and explained I may look a little different like you don’t look exactly like your brother, and that is OK as everyone is different. It just so happened I was putting my things into my car and he came out of the store and was parked right next to me. I thanked him for his rare example of care and compassion in handling this situation. As I handed him some cash which he was reluctant to take, I asked him to do me the favor of taking his family out for ice cream as a way of saying thanks. Another incident happened recently when at a local restaurant where you order at the counter and they bring your food to the table. I was in front of a family and the kids notice me and start to stare. I place my order and take my seat, the husband takes the kids to go get a seat as the wife handles the order. They sit near my table. The husband plugs into his phone for some escapism. As the younger kid about 6 continues to stare at me incessantly they tap their older sibling and point at me. The older child also stares and makes the comment “What’s that guys problem, why does that guy look so ugly?” as dad provides no response, and continues to screw around with his phone.
There is a state of grace I have come to realize, in all things be thankful, but it’s OK to not be thankful for all things. I don’t know why what happened to me happened, and when I die this tops my “Questions to Ask God list.” Now even in the quiet moments of reflection today, God has been silent, and distant, despite my prayers for strength, understanding, direction, and acceptance when times get unbearable. This is my struggle each day, a sort of “Daily Bread” we ask our divine creator to grant us. Sometimes its whole, enriching, and nourishing, other times it’s rancid, unfulfilling, moldy and tough to swallow. It is the realization and frustration that the tolerance experienced by the few are the exception and not the rule. We are asked that our trespasses be forgiven as we forgive those who trespass against us.
How does The Munsters square in the real-world with someone who has a Facial Difference? Since wearing a mask in public, a noticeable thing is happening. In the community, the stares and inquisitive looks seem to be lessening. People who tap each other, whisper, or gesture in my direction seems to be going away for the moment. I am not a shrinking violet who scurries for the shadows, I demand an experience-rich life, I expect the same acceptance as everyone else. I have had a blast at Karaoke, taken and performed Short Form Improv, commanded the stage as a storyteller, participated and led various civic organizations and church functions. I use my talents for a better world. I have a wonderful family, a few good friends and an amazing fiancé now my beautiful wife to share my life with. Despite the challenges I have been dealt I have cultivated a warm genuine and bombastic personality with an amazing and complex sense of humor. I am a darn good self-taught photographer. I am a success at my career, and not only do I deserve and expect the same opportunity as everyone else, but I also demand it. I long for a society in which attachments to looks are secondary to the qualities of the person within. When was the last time you saw someone who looked different in that print or video ad for the new car, food, clothing or gadget? When was the last time you saw an article like this in Vogue, Allure, or Vanity Fair? My guess is it’s too radical for the coffin dodgers at the editorial board. I am a unique person and strive to make the most of life and live each day for the blessing it is. I am hoping this article has enlightened you, and that it promotes a clearer understanding. If there is a single point I would like to make is that I hope this is a time of societal transcendence, acceptance in being who we are, how we are, and the way we wish to be.
*”Facial Difference” This is the politically correct descriptive term. It replaces “Facial Disfigurement”, ” Facial Deformity” and “Birth Defect.” Outside of a clinical setting these terms are considered highly offensive, and should never be used as a descriptive quality to refer to someone.
(1) Conan O’Brien (comedian) Tweet: “It’s almost like Mitch McConnell behaves the way he thinks a guy with a face like that should behave.” tweeted 1/3/2021 11:48AM. At that time approximately 30k people liked the tweet, and 2k people retweeted this.
(C) 2021, 2024 This work of Mark Charbonneau is copyrighted and may not be republished, repurposed or included with other written works without the express written permission of the author. Inquires may be made via the contact form.