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

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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 like 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. 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!

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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Originally published: October 8, 2017
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