Friday, June 14, 2019

#WonderWednesday: Grace Shares Her Story Via Skype with Virginia Students





Grace Anto spoke to seventh and eighth grade Frances Hazel Reid Elementary School students in Leesburg, Virginia. Grace spoke about her facial difference and shared her personal experience as it relates to the book Wonder. She also went above and beyond, teaching the students about ICQ (introduce, compliment, and question), interpersonal skills to help improve the students relationships with one another. The teach tweeted, "Grace has a craniofacial condition. We were so lucky to Skype with her today.Always be kind and just because someone may look different doesn’t mean they don’t like or can do the same things you do."



Another teacher reflected on the Skype experience, too. She said, "Loved that Grace started by making connections with the students about what they had in common. This was an amazing presentation and SKYPE experience that the students and teachers will never forget! Grace touched many hearts at FHR.” Thank you, Grace for being of service to our community and sharing how to choose kind! 







Monday, June 10, 2019

Dillon Reflects Poetically About His Brother and Best Friend


Credit: Eric Lucas Facebook Page


By Dillon Lucas

Editor's Note: Seventeen-year old Dillon Lucas wrote this poetic reflection about his brother, and best friend, Brody. Brody was born with Apert syndrome. Dillon has watched his younger brother manage and overcome many surgeries. In this piece, he reflects on what the parental and sibling experience mean to him. He shows us the effect it has had on his family and himself through descriptive imagery and rhyme. Thank you for your thoughtful poem, Dillon. Writing is a beautiful way to honor our feelings, families, and personal experiences. You have captured them well. Keep on writing! Continue to share your spirit with the world.

My Best Friend

We have put him in the arms of a surgeon.
We have slept upright in a hospital chair.
We have listened to the beeping of machines.

We’ve been thankful.
We’ve smiled through the tears.
But with all of this going on all we can feel is fear.

We aren’t able to do anything when the time comes.
All we can do is sit there, hope and pray
That hopefully he will come out of that room one day.

The doctors, about to take him in the room.
I turn to my mom and she sheds a tear.
She leans to him and whispers “My sweet boy there is nothing to fear”

I hold back the tears after looking at my mother.
All I can do is wonder.
On what those surgeons will be doing to my little brother.

Saturday, June 8, 2019

Hannah's A Success!




Editor's Note: As we celebrate Apert syndrome awareness month, we thought some stories were in order. Meet Hannah Brown from Fox River Grove, Illinois. She loves going to Myrtle Beach, SC on vacation, kayaking, and shopping. In this reflection she tells us what her life is like with a person that has Apert syndrome.

Thank you, Hannah for helping us raise awareness this month.

By Hannah Brown
Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.
I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.
In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.
A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.
Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.
Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything. 

Tuesday, June 4, 2019

Thank you, First Quarter Birthday Club



Our friends who donate their birthdays to CCA are changing the world, one fundraiser at a time. Check out the birthday club first quarter funders and consider donating your birthday this year! Facebook makes it super easy and takes 0% in fees! 

Thank you to the following folks who were so generous to pay forward the celebration!



30 Stories 30 Faces 30 Years: Dr. Francis Smith





Ever since I attended my first CCA retreat in 1994, in Indianapolis, I have felt immediately like part of the family. Not only that, but I found quickly that I could be an adult mentor to the children and a peer mentor to adults affected by craniofacial differences, due to my own life experience with Treacher Collins syndrome. I also enjoy encouraging their parents and families. Over the years, I have become more up front as an advocate. I treasure the lifelong friendships I have made and opportunities to meet and encourage new families in the craniofacial community. The CCA Cher's Annual Family Retreat is the highlight of my year, and I look forward to many more years. Craniofacial advocacy (including involvement with CCA) has gone hand in hand with my burgeoning career in craniofacial scientific research.


Francis, Kate More and family visit the zoo

Francis lives in Aurora, Colorado who works as a craniofacial research doctor. Currently, he hopes his next research appointment will be at a European university. Most recently, he completed a post-doctoral fellowship at the University of Denver. He earned a doctorate in Oral and Craniofacial Sciences from the University of California San Francisco for his research on hypoxia induced craniofacial malformations in 2012. He holds a BSc from King’s College and a Master of Science in Biology from Purdue University. He enjoys playing piano and violin, drawing, reading, and collecting antiques, especially old medical devices and instruments. In 2018, Francis published his biography, Wonderfully Made with co-author Michele DuBroy. 



He says, “As a man with the rare craniofacial disorder, Treacher Collins syndrome, my life has been a struggle and an adventure. My childhood was rough with bullying in school and exclusion from childhood activities, but my adulthood has been an adventure because my TCS has given me untold opportunities to publicly speak out for awareness of craniofacial differences whilst being a craniofacial research scientist.”


Sunday, June 2, 2019

30 Stories, 30 Faces, 30 Years: Jerry Carchi


CCA has been one of the most inspiring organizations my family and I have ever been a part of. We found a place to call home, when it comes to being a part of group we can count on for advice and a place to pay it forward to a family just starting their journey into the craniofacial world. We have had so many great moments at the CCA Retreats, it is so hard to pick a favorite moment, but I can say that all those moments combine to become one great experience that is filled with pure love, understanding, kindness, and compassion. We see the future of the CCA family growing bigger and stronger as we continue to show families and individuals with facial differences that with love and support we can achieve anything no matter what the world throws at us.

                                                               -Jerry Carchi, CCA Dad


Jerry Carchi is the quintessential CCA Dad from Hohokus, New Jersey. He learned the art of fatherhood from his own great dad, who was always there, selfless, and reveled in seeing his children enjoy life. Jerry says his father “lived for us kids, and set the example of how to be with my child, Sydney.”

Sydney was born with Pfeiffer syndrome in 2009. Jerry and Virginia, her mom, hope to never let anything get in the way of Sydney doing and experiencing everything life has to offer. Jerry says, “CCA has helped Sydney embrace her differences and to never let barriers get in her way.”

The Annual Retreat and Educational symposium has had a positive effect on Jerry’s ability to be a father. Jerry and his wife, Virginia, learned about CCA and the retreat from Diana Sweeney at Children’s Hospital of Philadelphia. Jerry says the retreats have an overwhelming safe feeling. “We were not worried about who Sydney was hanging out with. There was no anticipation of what others were going to ask her. We, as a family, were free to be ourselves and feel a sense of normalcy.”

In addition to their annual retreat adventures, the Carchis love to seek out local adventures. They enjoy going to the park, art exhibitions, musical performances, hoping to show their daughter the world of ways she can authentically connect with people through the things you do, not the way you look.

Jerry has danced his way into our hearts here at CCA and at the Wyckoff YMCA where he works as Assistant Director. Jerry wanted to make a difference and help people find community through his unparalleled dance steps, kind heart, and loving spirit. With that said, it should be no surprise that Jerry teaches weekly Zumba classes at the YMCA and on Saturday morning at this year’s Annual Retreat and Educational Symposium, two communities he cares for deeply.

Many Thanks To Our Retreat Sponsors!




CCA is grateful for our sponsors, who generously provide funding for our Annual Retreat & Educational Symposium. Our sponsors are unique in that they not only support this annual, 29-year tradition, but also serve our craniofacial patients and families, through their products, support, and services. Without them and our loyal donors, it would not be possible to plan and present this event for our families every year.


Let’s thank all the sponsors for their financial contributions to the 2019 Annual Retreat and Educational Symposium in Scottsdale, Arizona.



Tuesday, May 28, 2019

#WonderWednesday: Christine Clinton Speaks to Pennsylvania Students



Christine Clinton visited Pen Ryn School in Fairless Hills, Pennsylvania. Christine's personal story of her life with Apert syndrome brought the book, "Wonder" to life for over 80 students between the ages of 11 to 14. The middle schoolers asked questions and engaged with Christine about bullying, kindness, and acceptance. The themes of the New York Times bestselling book by R.J. Palacio and Christine's presentation reflected well on the school's mission to nurture, empower, and encourage its students in the pursuit of excellence.

One of the Pen Ryn School's teachers commented on Christine's presentation saying, "Christine shared her story with our students, and encouraged them to be kind and get to know each person for who they are, rather than judging them based on how they look. Everything was great! Christine's story is worth hearing by students and adults of all ages. Building an understanding, and hearing her bravery was inspiring."




                               




Tuesday, May 21, 2019

#WonderWednesday Fun Photo Collage, Pete and Dede Visit Capistrano Unified School District!




Laderra Ranch School 
Peter and Dede Dankelson visited the Capistrano Unified School District in California during spring break a few months ago. They spoke at a eight schools in the district and visited the Global Genes offices, spreading their message of kindness and acceptance. We hope you enjoy these images from their trip to SoCal. 

Many thanks to the educators, teachers, and students in the Capistrano Unified School District for their support. Keep choosing kind in everything you do!

Alisa Viejo School 
Aliso Viejo School 


Arroyo Vista School 

Don Juan Avila School 

Global Genes Offices

Don Juan Avila School


Global Genes

Las Flores School




Shore Cliffs School 

Dinner with friends!
Peter Dankelson, Morgan Mecklenberg, and Madelaine

St. Junipero Serra Catholic School


Vista Del Mar School 

Monday, May 20, 2019

#FaceEqualityWeek2019 Rewind: Stared Into Funkville

Photo Credit: Kara Jackman
Editor's Note: Jenna writes thoughtfully about a recent staring experience on public transportation. This story really demonstrates the need for a global understanding of facial differences, which is what we are all striving for during #FaceEqualityWeek2019. Nevertheless, Jenna finds a way through what was a tough morning thanks to her friends, family, and CCA. This post was originally published on the CCA Kids Blog at the end of December 2018. It received 4,223 views. Clearly, it resonated with our CCA family.
By Jenna Ottow
My day started out like it normally does.  I take a 25-40 minute train ride, depending on the day, from my apartment in Malden into downtown Boston where I work.  I get on at the second stop on the line so the train is usually fairly empty. As the train choo-choos along people pile in.  By the time it gets to North Station, a connecting hub, it’s jam packed. I usually enjoy the commute. I have a playlist I listen to, sometimes a podcast, but mostly I let my brain wake from the slumber of sleep to the bustle of the busy day ahead.  It’s a process.

On this particular morning, I was able to find a seat where I sat listening to whatever humdrum was playing in my ear as the other passengers milled around me.  I surveyed, like I’ve seen other riders do, not really looking at anything in particular, but changing the scenery with the tilt of my head. It was then that I could feel the stare.  A hard stare. Most of the time I don’t even notice it, especially when I am on foot. However, sitting still on the train it was hard to avoid and impossible to ignore. I was born with a rare, craniofacial birth defect called Apert syndrome that causes

onlookers to look.  They not only look, but they stare, point, sometimes name call, which happened lots when I was younger. Now, as an adult, I just avoid eye contact all together. This was not the case this morning on this train.  I was uncomfortable. I glanced over at my ‘admirer’ like a reflex. It was a younger woman, mid-20’s, headphone chords coming out of her ears and sunglasses resting upon her head, chomping on gum between her pearly whites, which I fantasized punching out. There she was...staring.  I smiled, politely, not really in the mood to exchange much more than a nod, then I looked away. I fumbled with my phone for the next song on the playlist. I’d like to tell you it was something inspirational like ‘Born This Way’, by Lady Gaga or ‘The Way You Are’ by Bruno Mars because that would have been terribly ironic and a bit sappy, but it wasn’t.  When the next song started I felt her stare again, look, and then look away. I was losing patience and suddenly felt so small. Thankfully, my stop arrived moments later. I was able to shuffle off of the train, wishing I could be another anonymous face in the crowd, but instead I knew I stuck out like a sore thumb.

Normally the “stares” don’t bother me.  Today it did. Like I said, when I’m on the move I don’t even notice them.  There is quite literally nothing I can do to change the way I look. Sadly, we live in a society where if you look slightly uncharacteristic than the rest of the population you are an anomaly that deserves every gawk, gape, stare, and judgment that’s sent your way.

I found myself in a funk for most of that day.  This state was a personal struggle. I don’t like to live in “Funkville.”  I am overall a fairly happy person, approachable, laid back, and friendly. But that day, I was in a funk.  I didn’t really want to talk to anybody. I was moody. Annoyances found me at every task, and well, I was just sad.  A lump lived at the back of my throat, taunting me to start weeping at any given moment throughout the work day. I couldn’t. I needed to be professional, I needed to stay composed and focused.  Bursting into tears in front of co-workers would ironically make me look…weird! I reached out to my partner towards the middle of the day. He’s literally one of the only people on the planet I know who knows how I feel. He too has Apert syndrome.  He’s been on the receiving end of the stares, the gawks, and the whispers. He’s felt the hurt. It’s literally the foundation of our relationship. He, of course, was comforting. Finding himself in similar or identical situations, he was able to empathize and agreed that this was indeed “Funkville” and it was okay for me to stay there. He validated my feelings. Sometimes that is all we really need to make it through tough emotions.  


The next day came, and so did the stares, as expected.  For some reason I didn’t find myself as effected, but there they were, and there they will continue to be.  Knowing that I can let those beady stares roll off my back is a comfort, but knowing that I can travel to "Funkville" for solace is almost as redeeming.  

Saturday, May 18, 2019

#FaceEqualityWeek2019 Rewind: How to Handle Awkward Questions About Your Baby




By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 
(Editor's Note: We chose to run this piece by Amy Mendillo during #FaceEquality2019 Week because parenting during these infant years can be difficult when you first bring your newborn baby out into the world. While the world asks questions, you, as parents, must provide answers and advocate for your child. Amy shows us how its done, through anecdotes shared with her from other parents with children born with cleft lip and palate.)

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.


As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.

Thursday, May 16, 2019

#FaceEqualityWeek2019 Rewind: Dawn Shaw On "Allowing People To Be Human"



Editor's Note: This piece by Dawn Shaw, Author and Professional Speaker, ran on our blog on September 8, 2016 and on her personal blog, Facing Up To It, in 2015. During Facial Equality Week, we felt this piece was relevant to post again. 
Shaw understands adversity. She was born with a rare tumor, the removal of which left her face half-paralyzed. Here she talks about what she does in tough situations when others notice her differences...she turns them into opportunities!

Recently, an article about facial discrimination that was published online was brought to my attention. It is called Distorted Faces: Living with Facial Disfigurement  (Click the title to link to the article.) While I object to the use of the term “disfigurement," I thought the article was well thought out, well written, and brought up a lot of very interesting…if painful…points. I especially appreciated that it explored the psychology around physical differences in our society.

Thankfully, when I go out, I don’t see people recoiling in horror, doing double-takes, or demonstrating a startle reaction when they see me. Admittedly, after 48 years of having a different face, maybe I have developed a filter so I just don’t notice. However, I do a lot of very public things, like volunteer to sell merchandise for bands. Every once in awhile it occurs to me to look around and see if I can catch any sort of reaction when people see me. I seldom do. I give most people a lot of credit for internalizing their reactions. For the most part, people don’t remind me of my appearance.

Sometimes I catch people staring at me, sometimes I don’t. Usually I will notice children because they are so overt about it. Often I just smile, wave, and if they are close enough say “hello” to them, which lets them know that I’ve noticed that they are watching me. Acknowledging them helps demonstrate that I am a person, not an object.

In other situations, I will invite children to ask me about my face. I do this because I believe that it is important for them to acknowledge their curiosity and especially because it encourages the child to engage the person they are curious about directly. Often, children will ask the adult they are with “What happened to her face?” Except on very rare occasions, the adult they are with doesn’t know. Worse yet, the adult will make up an answer. I prefer to answer for myself, and am always thrilled when the supervisory adult supports and encourages my engagement.

Most significantly, once the child’s curiosity is satisfied, I am no longer interesting to them and they go about their business. 

How do I react when I see other people with physical differences? Of course I notice. But I have learned to internalize my reaction. I try to treat others as I prefer to be treated. Yet I am still learning to squash my assumptions. Those, too, are strongly associated with being human.

The article I mentioned earlier, while it addresses our human expectation regarding faces and an involuntary uneasiness when our attention is drawn to a face that defies the norm, it is not about “making it OK” to be afraid of someone who is different. However, those of us who are different have to allow people to be human.

We, meaning people with physical differences, are going to get noticed. I have been known to use this to my advantage.

However, as human beings, we should be allowed the expectation of being treated decently by other human beings: with respect.


Curiosity is normal. Rude behavior is never OK.

Want to read more by Shaw? She has written three books — her memoir, “Facing Up to It,” and a guide to developing resilience called “Friending the Mirror, ” and “Facial Shift, Adjusting to an Altered Appearance” for people who suddenly find themselves with a changed face. She hosts a webinar series also called “Friending the Mirror,” which focuses on appearance-related issues. Dawn also raises Icelandic horses and has a passion for live music.

#FaceEqualityWeek2019 Original: The Metaphor of Facial Difference by David Roche



By David Roche

The use of facial difference to symbolize evil is the most hackneyed metaphor in Hollywood.

I am facially unique. The left side of my face and neck is empurpled and engorged by “veins gone wild” in the form of a congenital venous malformation. My appearance was further distorted by multiple surgeries and heavy radiation in my infancy.

I am tired of seeing people like me portrayed as evil in the movies.

The list of disfigured villains in cinema is long: Freddy Krueger, The Phantom of the Opera, the Dick Tracy villains: Pruneface, Haf-and-Haf and Gruesome, Darth Vader, Scarface, Quasimodo, Igor. Charlize Theron's character in "Monster." And on. And on.

I recall seeing "Mad Max: Fury Road" on an airplane trip—every single one of the “bad guys” had a face that is in some way distorted.

Check out Disney’s take on their Lone Ranger villain: “Cavendish is a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul.”

Not that the point needed forcing. When facially different characters appear on screen, the viewer knows without question what they represent. They are evil and bent on revenge or murder. They loathe, and threaten to destroy, anything that is good, decent or cute. The exceptions are few and often as ludicrous as Disney's quaint Quasimodo (by Igor, out of Bambi). And ok, even with his pronounced propensity toward violence, I admit to liking Deadpool’s sense of humor.

I understand that movies are a visual medium, but what message is delivered to the veteran with the side of his face blown off or burnt in combat? Or am I just being sentimental here?

What does a child with a cleft palate think about herself when the Joker points to his scarred mouth to justify monstrous behavior?

The Lion King’s adversary is named Scar. We conclude immediately that he is wicked. An iconic family movie thereby teaches young children that any facial difference, however small, portends evil.

The Phantom of the Opera is defined by disfigurement and forced to live, hidden and fearful, in the dark. The exact moment you see the Phantom’s mask, you know that his love of music and the incredible gifts he has brought to the world of opera are meaningless. In the limited artistic vision of Hollywood, scars always trump talent.

Yes, there are exceptions, like the amazingly saintly Elephant Man and the more fully realized Rocky Dennis in "Mask." J.K.Rowling dealt creatively with Harry Potter’s facial scar in her books, seeing it as a source of self-learning, but the movies totally missed the point.

Face it. There is no cinematic metaphor that is more trite and shallow. Time after time, the facially different are barely human, driven insane by deformity, ready to retaliate with mutilations or murder. Their highest motivation is revenge— or maybe, on a good day, lust.

There is more at stake here than Hollywood’s artistic laziness and lack of imagination. This is not just a PC issue. The face is commonly viewed as the locus of the human persona and "face-ism" is a primary control mechanism in our society. We learn to judge ourselves and others by appearance. As we do, inevitably and inexorably, we find ourselves deficient. Forget measuring up to an ideal. The ideal does not even exist; it is a photoshopped construct of a marketing concept.

In my work as a performer and keynote speaker, I have met thousands of facially different folks who bring many gifts into the world and who, in fact, radiate beauty. You know what? I’ve never met a single one of them who carried a chain saw!

My favorite work is at middle schools, where my wife Marlena and I do a program (now a video) titled Love at Second Sight, about appearance and acceptability. What else is more important to a 12-year old seeking to find a sense of self and a place in the world among his or her peers? The children often confide in us about their self-perceived flaws and it is clear that in many cases, their perceptions have contributed to diminished self-image.

This is not only about children. The very first time I ever gave a talk about facial difference, a lovely woman came up to me, clasped my hand and said, “David, you are so courageous. It was terrible for me in school too, and I am still very embarrassed and ashamed of my freckles.” I looked away, thinking to myself, “Really!? The heartbreak of freckles!?” And yet I could see that her upset was real.

People continue to confide in me about what they see as their deficiencies, and not only the external ones. Early in my career, I was surprised to be invited to speak to an organization of adults with learning disabilities. I had thought we would be at opposite ends of the disability spectrum. I got a standing ovation and a good portion of the audience wept. These were people born before dyslexia and other similar disabilities were understood. Many had to spend their childhoods finding whatever accommodation they could on their own, secretly, with the constant threat of being labeled lazy or stupid. Their disfigurement was internal.

Here is the crux of the matter: my face is unique but my experiences are universal. Everyone has the fear of being in some way defective, unlovable and unacceptable to society. That is the true disfigurement.

Countless times every day, we are driven to moments when we turn away from our own images in dismay and despair. In this accumulation of vulnerability, our sense of self-worth is constantly assailed and eroded.

These moments are deliberately fostered by those who seek profit and power. It is out of the fear engendered in these moments that we purchase everything from eyeliner to SUVs. Predators of all sorts—financial, political, sexual—come to feed on our lack of self-worth.

The facially disfigured are presented as monsters. Inside ourselves we think we may be like them—unacceptable and unlovable to family, village, species and perhaps even to God.

Whole systems of belief have been built up that feed on our self-doubt: the doctrines of original sin, of caste, of karma. All serve to perpetuate the power and privilege of those who propagate them. Our negative self-judgments are encouraged by those in power because it is in their accretion that our souls shrink, we feel worthless and undeserving and we turn over our power.

I do know what it is like to be out in the world feeling monstrous. Every time I walk out my front door, I deal with stares, comments and the occasional cruelty, even to the extent of having had someone spit in my face in public. It is not the fact of my disfigurement that wears at my psyche. It is the fear and self-doubt of others. In fact, it is their worry about being rejected and abandoned, which they project onto me. That’s one of the jobs of the visibly disabled, to carry the weight of the fears of others so they can pretend that they are normal.

For most of my life, I was very ashamed of my appearance. Paradoxically, I have found wholeness through, and with, what at first seemed to be a grotesque flaw. Working through my fear and shame, I have come to discover that I am whole. My shadow side is on the outside, where I have been forced to deal with it.

I have learned that my face is a gift. (Not one that I was real excited about, at least not at first.) It is a gift because I have been forced to look inside to find my self worth. And that is exactly what everyone -- not just the facially disfigured person -- has to do in order to reach spiritual and emotional maturity. Inside each of us is the place where fear and doubt reside.

It is human nature to judge ourselves. We are social animals. It is part of our genetic heritage to be concerned about our social acceptability. This is a valid concern. But to put appearance at the core of that judgment is corrupting. Obsessed by our flaws, we can easily forget the true standards of assessment of self and others.

Let me suggest another way of looking at facial difference—one based on the truth of human experience. The artistic metaphor of a scarred face can be one of personal integration. Every person, no matter what their appearance, must reach the point of self acceptance. That magical moment is the key to living an integrated and full life. A character with facial difference can represent someone who has lived through that moment.

So please, Hollywood, could we try for a little more imagination and creativity? An about-face, perhaps? Don’t make me take out the chainsaw!



David Roche is a performer, humorist, author, and inspirational speaker that lives with his wife, Marlena, in Roberts Creek, British Columbia. He enjoys working with students of all ages as a motivational speaker. In 2018, he appeared in the film “Happy Face,” by french filmmaker Alexandre Franchi.  David enjoys spending each day with the love of his life, writing his next book, all while watching the cedars outside his window sway. Please check out his body of recent work at www.facebook.com/HappyFacethemovie