What the Controversial 'Wonder' Publicity Campaign Demonstrates About Craniofacial Equality

I understand why many are offended by the “Real-life Auggie” campaign being promoted by the film “Wonder,” adapted from R.J. Palacio’s New York Times bestseller of the same title. People feel as if they are being presented as a circus animal or behind a glass cage. When I first heard this metaphor, it sent razor-sharp shivers down my spine. We are people, not commodities.

While I firmly believe there is no ill-will intended by this campaign, it does not send the appropriate message. And it’s painfully excruciating to hear how this affects others. My friend and advocate Ann Piesen, born with Treacher Collins Syndrome states, “I’m concerned as it creates the impression that I’m being observed. We are not a novelty because of a movie.”

Initially, all I could think was, what is happening to our society and why haven’t we reached a level of mainstream equality yet?

I believe that this film has a powerful opportunity to raise much-needed awareness, and I’ve become grateful for its existence through the many relationships I’ve formed during its promotion. It’s natural for viewers to want to meet real people, because that’s how we can watch and authentically relate to the truths portrayed on screen. Personal experience is reality, and we can’t lose sight of that.

I’ve been advocating for awareness for over two years now, and I regularly speak with several families online who are hesitant for any craniofacial organizational involvement due to several different factors including fear of exploitation, further stigmatization, and money. I’ve retained the “Erin Brockovich” label in the craniofacial community as I work to provide valuable information, connections, and resources while maintaining confidentiality with these families, many of whom I carry meaningful relationships with. Most are aware that I work strictly as an awareness advocate and I do not promote fundraising or self-gratifying surgeries.

My goal is to foster community collaboration and awareness efforts so we can enact the real change needed.

I support many organizations for their awareness efforts, because without them we wouldn’t be here today. I am especially supportive of the annual retreats and events provided by the Children's Craniofacial Association. I have close friends now that I wouldn’t have had before.

While I don’t see any intentional acts of degradation in the campaign for of this movie, I understand why some find it offensive. Many seek to protect their children and to feel equal to everyone else. The craniofacial community is often sensitive, and rightfully so. We must collaboratively affirm our awareness actions and seek to protect each other in a compassionately equal and logical manner.

Our faces may reveal a physicality some can’t understand or relate to, but we mustn’t forget to express that we are people too. Like anyone else, we have thoughts and feelings deeply connected to the roots of our souls. We’re unique and competent individuals seeking to passionately experience our lives. Many of us have impressive educational skills and qualities that are missed because we’re often taken at face value.

Several medical research studies document that children born with craniofacial abnormalities typically have average intelligence. However, due to widespread stigma, too many people assume otherwise. There is so much value, worthiness, and beauty beneath the surface of our faces.

I can easily name dozens of individuals born with mild to severe craniofacial anomalies and their success stories. These individuals are government employees, writers, doctors, models, therapists, actors, educators, artists, singers, mechanics, nurses and more. We’re here to show everyone that we are not the stigma of our disability or defined by incapabilities.

We have exceptional talents within us all, but we must fight to find them together. We must supersede our fears and act bravely to accomplish what we desire in our lives. No fictional movie or book can achieve what we can together in the form of our collective voices!I hope you can resonate with my words because we're all in this together.

For more information on our collaborative efforts in raising further craniofacial awareness, please join us on Facebook at Craniofacial Support and Resources.

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READ: A recent medical study 'Children with craniofacial conditions face most difficult social pressures in elementary school' research by specialist Dr. Justine Lee of UCLA Mattel Children’s Hospital
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Published via The Mighty
Read More Articles written by Cynthia Murphy
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Article references 'Wonder' the book written by R. J. Palacio and Lionsgate upcoming film starring Julia Roberts, Jacob Tremblay and Owen Wilson

Craniofacial Differences or not - Make a Moral Choice and use your Voice

Do you believe in energy? I do. I believe that everything we surround ourselves with including music and people imparts within us. Do you believe in signs? I do, they’re everywhere. We’re surrounded by a loving light, my friends.

I’m not really into being a celebrity fan unless there’s meaning. I’ve met countless celebrities growing up in Big Bear while working the luxury hotels and ski resorts as a teenager into adulthood. Personally, I think celebrities are overrated, but not the inspiring ones. You know the influential people who are trying to do something about the ugliness out there in the world? Stuff is happening right in front of our eyes, but we’ve been blinded, my friends.

Look beyond the news, and you will find what I’m talking about. Nothing is being hidden from us; the deception is in plain sight. We're seeing more cases where causes of immorality and #charity are being combined and defined together - I'll get to that later on.

A few weeks ago I learned of the harsh publicity Taylor Swift endured. Terrible things were said about her. One thing that gravitated me towards her is how she took a stand for our rights, as women and many other things. Abuse is #abuse, and it should never be tolerated. If you don’t recognize by now that we the people are responsible for standing up for ourselves and our American rights - you need to take a minute please because we can lose them. We need to keep this world in balance and harmony with what’s morally right. Take a stand for what's right, even if you're terrified. The escape from your fears will be far much easier than what's to come.

We all have a story and different traumas - some in more severity than others. I know I’ve gotten abused in more ways than I can count. I was born with a physical deformity, my step-father did terrible physical and sexual things to me starting at a young age, and my mother abandoned me altogether. I could go on, but I'll spare you the details... I thought about suicide for years, and I hated myself internally, though I showed others a more confident side.

For years I blamed God. I engaged in secretive, emotional self-harm, and I acted out, but I stayed passionate in my career ambitions. I never stopped working and going to school, and I've never quit pursuing my rights for #equality.

I may have failed standing up for my rights as a child, but that all changed when I became an adult. I've filed several cases against employers and every time I was asked 'what financial incentive I wanted' when all I was seeking was EQUALITY. We are all worthy of that and more. Sadly, I see that it’s starting to slowly diminish in today's society.

A few days ago I heard Taylor’s Swift new song, and now it’s stuck on loop in my head LOL. That’s where energy comes in. You may not realize that what you listen to does, in fact, affect you. And with that said my friends, you can, and you will feel the energy coming from it. I felt genuineness from Taylor's song, and I’m grateful she took a stand for all of us. I hope you'll continue to do the same, if not make the change.

Treacher Collins Syndrome Weight Loss

I couldn't sleep so here goes another video on the subject of weight loss from me to you.

Craniofacial Diaries Deep Thoughts

Making the switch to an all vegan diet has dramatically changed my life for the better... I wish I knew the importance of health 30 years ago. I've never felt so spirituality connected and healthy in my life. Things I failed to see before, I see now. I'm not as emotionally fragile. I used to need people who never needed me to begin with. I feel emotions much more intensely unlike before, but I like it better this way. I'm not blind to any negative energies that try evading my space. I only care to know moralistic and loving people. Today I'm happy and I feel content with being me.

Overall, I feel progress, but I must admit that I'm still frustrated. I'm not quite there and I do fear that it will worsen, especially if I don't gain some weight soon. I'm 95 pounds at 5'5. I know I'm not alone, there's more of us out there who are enduring the same symptoms. Fear not judgement. Share your experiences. Knowledge is power.

I need strength in my bones. I feel very weak. This is so not me... The bones in my legs, arms and feet regularly pop, and it's not comforting either. I regularly use various heating pads (praying they don't catch fire) and KT tape which both help me tremendously. A nice bath in Epsom Salts is comforting at times too. I have two knee braces and two wrist guards for each wrist that I often wear. My right hand moreso than the left. My tailbone is very bony and uncomfortable to sit on for long periods of time, especially during driving.

You can ask anyone who really knows me that home is not where you'll always find me. I love going out and experiencing life, even if I'm a lone ranger when doing so. I miss nature. This just isn't me.. I'm confident I'll find some answers soon. Meanwhile, I'll be sure to share everything with you too. ❤