LinkedIn

Tuesday, May 10, 2016

How This Upcoming Film Proves Hollywood Still Doesn't Understand Disability


https://themighty.com/2016/05/wonder-disability-and-diversity-in-the-entertainment-industry/

The furor over the 2016 Oscars didn’t get my attention at the time. Then I started noticing what those protesting the awards had pointed out. People of color really were being excluded, even for roles that should have automatically gone to them. In fact, according to the University of Southern California, although an average of 75.2 percent of speaking roles already go to white actors, some of those parts are actually characters of color. Why does Hollywood ignore the real thing when casting? And it’s not limited to race and ethnicity.

There is currently a film in the making that should have brought joy to the craniofacial community. Adapted from R.J. Palacio’s New York Times bestseller, “Wonder,” the film will star Oscar and Academy-Award winning actress Julia Roberts as the mother of a boy with a severe facial abnormality. But wait. The boy will be played by Jacob Tremblay, who doesn’t have a craniofacial disorder. To top it off, Julia Roberts was given the starring role of a Latina, when she is a Caucasian actress with no cultural or blood ties to Latin America.

Tremblay will have to be “disfigured” with realistic and prosthetic makeup. Also, he’s going to have to fake a speech impediment. Acting out any behavioral and physical disability is challenging, because there’s a fine line dividing authenticity from misrepresentation. Some films are so tainted by inaccuracy that the acting obviously does not represent the real-life person portrayed, which can be perceived as insulting.

It’s not an isolated incident, either. “Grey’s Anatomy” was touted for including an episode on Treacher Collins syndrome (TCS). When I first saw that episode and the grotesque makeup comparable to Frankenstein on the actress, Amanda Leighton, I immediately felt betrayed. I was disappointed that a woman who doesn’t have the disorder was selected to begin with. I felt that my self-image and the image of TCS was vastly misrepresented. She had a small part, with only a few lines to perform in one episode. Why couldn’t they have sought someone more fitting for that role? Especially considering that five years prior, “Nip/Tuck,” another American television drama series, featured TCS and a very similar acting role, but cast a man who actually had the disorder.

Many of us find it very disappointing that the casting director chose an actor who doesn’t have a craniofacial disorder to play Auggie. We feel that the message behind this choice is contrary to the book “Wonder.” Many of us, including myself, have dealt with the insults of our faces being called a mask on all days but Halloween.

There is irony in the fact that the actor will be altered with makeup, changing his appearance to ours. There is no denying that Jacob Tremblay is an incredibly talented actor and has the capability to perform the role for the film adaptation of “Wonder,” and the same goes for Julia Roberts. However, we must seek to protect what we represent, and we must do so with realism and authenticity.

One of my all-time favorite movies is the heartbreaking 1985 film, “Mask.” The film starred Cher as the mother to a young boy who had a facial disfigurement known as “lionitis.” The movie takes you through his journey in seeking public acceptance and finding love; all the while, he had already outlived his life expectancy. Rocky Dennis was played by actor Eric Stoltz, who does not have a facial disfigurement himself, but he exceeded all of our expectations in playing this role, which also won an Oscar for best makeup. I have a full understanding that this film was made 30 years ago, when there were not many options in diversity. However, we are now in the 21st century, in a world of 7.4 billion people. Special effects and makeup are detailed, expensive and time-consuming. During filming, cast members often spend five to 12 hours a day in makeup. So why not cast a boy who actually has a craniofacial disorder?

It doesn’t have to be this way. It shouldn’t be this way. Stacy Keach, now honorary head of the Cleft Palate Foundation, was one of the first to prove that an actor born with a cleft lip and a partial cleft of the hard palate could be powerful, sexy and anything he aspires to be. Cheech Marin is Latino and born with a cleft lip, and proved that a comedian with a disability can be successful. Believe me, there is a man, woman or child with a craniofacial difference right now who has aspirations to pursue a career in the entertainment industry. We should encourage individuals from all walks of life, regardless of race, gender, sexual orientation, religion or disability to become actors and models.

Most people want to watch movies that are not based on stereotypes. We are the audience who contributes to the success of films. We are inspired by seeing real minorities on the screen, not Caucasian actors cast as ethnic characters, and not actors pretending to have a disability or physical difference. We want to feel as if we are living there in the moment and part of the film. We want to watch movies that resonate with our experiences. We are the real individuals actually living the truth behind the movies. We are just asking for an accurate picture of how we live on a daily basis, and to see and feel the real deal.

Article originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories.

Join our online community to find upcoming Craniofacial Events and Gatherings nearest you

Sunday, May 8, 2016

How I Found My Voice as an Advocate for Treacher Collins Syndrome


https://themighty.com/2016/04/treacher-collins-syndrome-self-advocacy-with-a-rare-disease/


I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.

Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.

Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.

This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.

There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it.  

When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.

Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.

No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.

I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world.

I’m advocating for myself, and I’m advocating for you.

Article originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories

Article republished on CCA Kids Blog "Growing Into Advocacy" and also republished on the Megan Meier Foundation Blog 

Join our online community to find upcoming Craniofacial Events and Gatherings nearest you
 

"When I Auditioned for 'America's Next Top Model'"


https://themighty.com/2016/03/woman-with-treacher-collins-syndrome-auditions-for-americas-next-top-model/

When Nyle DiMarco was named “America’s Next Top Model” in the show’s season finale in December, he was the first deaf contestant to win a $100,000 contract. While the hit show was scheduled for cancellation, this particular win ignited a national response and reaction to his success, and now the show will continue. There is no mistaking the fact that the fashion industry tends to disregard diversity.

As I watched DiMarco’s recent victory, I remembered back to 2009, as I stood with a group of other women getting ready to audition for ANTM. My friends couldn’t believe I went through with it considering I was born with Treacher Collins syndrome, a craniofacial disorder. Many of us born with Treacher Collins look at our faces and see a puzzle full of pieces that will never fit. We see a disaster. We see a miserable childhood full of bullying and a life of insecurity and anger. We’re tormented at school, ignored by the opposite sex and we usually resort to various facial surgeries to repair what doesn’t work (such as physical appearance, hearing and speech) and to make ourselves look more like the people we want to fit in with. When I auditioned for that show, I had already been through more than 10 cosmetic surgeries, and my friends told me I was pretty. But was I pretty by the standards of “normal?” As I approached that large auditorium in Los Angeles, wearing four-inch heels and a black cocktail dress, I signed in and joined the other women.

I tried making small talk, but nobody looked at nor spoke to me. Some snickered. I felt alone and stupid for being there, but I was determined to go through with the process. Finally, my group was called. We all stood against the wall, and judges walked up to us and took notes as we turned from side to side. Finally, they called the numbers of the ones who would go onto the next stage. My number wasn’t one of them. Although I lied to others about how far I made it in the process, I couldn’t lie to myself.

Now, as I watched a deaf male win, I realized he was picked, not by judges, but by the power of the people through social media, similar to the way the winners of “American Idol” are selected. I take this as positive for those of us who don’t fit the stereotype of attractive. When the people vote for what is beautiful, perhaps they will see something that fashion-industry professional judges miss.

Society today is seeking inspiration as a result of difference, and even though many of us are different, that doesn’t make us incapable of pursuing the same career goals as anyone else. There is a desire and need for diversity and more inclusive beauty standards in the fashion industry. If the definition of an authentic role model stems from all-inclusiveness, then why isn’t the industry setting an example to be all-inclusive? Why would I subscribe to a magazine full of models who are deemed the true definition of beauty, when I can never aspire to be in in that category?

We live in a world of difference, a world that so far, has not often been represented in the modeling and entertainment industries. This prejudice carries over to the professional world, where people with facial disorders want to be accepted and looked at based on our own merits.

Although I dropped out of high school, I was fortunate enough to work for one of the largest law firms in the state. The first attorney I worked for encouraged me to return to school, and I earned my associate’s and then my bachelor’s degree and graduated with honors. I have nearly completed my master’s and am studying for the Law School Admissions Test (LSAT). For the past nine years, I have been married to a good man who sees and loves the real me.

No, I won’t be auditioning for ANTM soon, but I hope that someone — many someones— with craniofacial disorders will be. I hope the perception of beauty transcends the limitations of the past and becomes more inclusive. I remember how the other contestants derided DiMarco because of his deafness, because he lived in a world of silence and was different, because, as they said, he would never fit into the high-stakes world he so aspired to join. With tears in my eyes, I heard his name called and watched his face light up in disbelief and overwhelming happiness when the American Sign Language interpreter translated the announcement of his win.

What is beauty? Here’s what I think. I think the perception of beauty changes. It always has, and it always will. Beauty is not only what is on the outside; it’s the inside that radiates on that outside. It’s a lot of people who never before had a chance. It is all of us who keep saying, “Here we are. Look at us.”

Article originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories

Article also republished via Disabled World and Megan Meier Foundation Blog

Join our online community to find upcoming Craniofacial Events and Gatherings nearest you