Charitable Giveaways: Craniofacial Cochlear Baha Hearing Aids

Does anyone need a new Cochlear Baha hearing aid device? We have TWO advanced processors to GIVE to #craniofacial families in need. The deadline to apply is coming up soon. Please apply and submit your application here: https://goo.gl/1NNu8u

Craniofacial Conditions and Chronic Illness

Wow, we've been receiving many applications for the Cochlear Baha hearing aid giveaway. Please apply if you have a #craniofacial condition and are in need! You can submit an entry following the link at the end of my new article. 💜
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If you have a chance, please do read it. I've included significant health information backed by personal experiences, interviews, medical studies and movie documentaries.

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

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 

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"When I Auditioned for 'America's 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

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